# The THYROID Thread



## Christine

I would like to start a thyroid thread on this board.  So many of us here seem to have various thyroid issues that are often coming up on the Community Board.  It would be great to have one thread for it that can be easily located and a person can scroll through past posts (kind of like the Breast Cancer GAGTWA thread).

Anyway, I'll start.  I was diagnosed with Thyroid Cancer 11 years ago.  I just completed a follow up scan yesterday to make sure I have no recurrences.  I have no results yet because my doctor is a jerk!!  Anyway, I consider myself an "armchair expert" on thyroid cancer so if you ever have any questions ask away.  I have also spent time doing both the HYPO and HYPERthyroid phases so I know how that can make you feel.

Who's next??


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## liznboys

Thanks for the thread Christine.  Hang in there awaiting your results. 

I'm hyperthyroid.  Looking back I think I was for awhile, but I was officially diagnosed in 2004 after the birth of my 3rd son.  The main symptom I had/have which led to the diagnosis are heart palpitations which come and go.  I have a nodule which bothers me sometimes.  I had an ultrasound done in May 2005 and nothing came up as needing further tests.  I have not taken any meds related to this thus far.  I'm currently nursing my youngest and my goal is to make it until next summer nursing him and not taking any meds.  Right now I am "ok".  My next check-up is in January, so we'll see where I stand as of then.


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## Christine

Hi Liz!

I hate being hyperthyroid.  I know many/most people complain of HYPOthyroidsim, but I find being hyper to be much more intolerable.  I've been severely hypo (TSH well over 100) and mildly hyper and it's the hyper side that gives me the most discomfort.  I hate the racing heart and palpitations.


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## Mackey Mouse

Christine, thanks for starting this thread and this is exactly what I wanted this board to be for.  

Believe it or not, my daughter had papillary carcinoma of the thryoid, I think it was 8 years ago... had a throidectomy and radioactive iodine treatment and lives her life with levoxil...hope I spelled that right..   She does have a tricky lymph node that they are watching, but so far so good.  As her Mom, I consider myself a bit of an expert too, but I do not know what it feels like to have the heart palpitations, the dry skin, hair loss first hand......

I hear you about your doctor....sometimes I am so shocked how they do not get back with results for tests.. I know we are not their only patients, but when you are waiting for a result, like you are, to see if there is a reoccurence, it is so frustrating.  Her doctor wrote a wrong prescription one time, too low, sent her into such a state with headaches, leg aches, you know what I am talking about.   She said she was sorry though so I guess it was ok....NOT.   Immediately wrote a new prescription, did not even make her come in for blood work..

Hugs and hang in there, and if you do not hear anything from the doctor, I would start my phone calling campaign...


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## rie'smom

I'm hypothyroid and I agree about the doctors. I have to call each time to get my results-2 times I was really out of whack on the numbers. What happens if you get really ill? It was really scary-I was very close to the numbers for a myexdema coma.
I changed doctors because of this and I am happy with the new doc.


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## lyeag

Hi guys, I am sure most of you saw my thread.  Am I crazy, or is hair thinning something that is caused by this????  I have really thick hair, or used to over the summer, now I am finding it everywhere.  

My heart was really pounding for a few weeks, now not so much, I just feel jittery.  I have trouble sleeping and I have lost around 12 pounds.  

I just want this weekend to get over with so I can call my dr.


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## Mackey Mouse

I am not a doctor here but to me, your symptoms could be thryoid related....or sometime stress can do it as well.. 

Call your doctor, get a blood test and get some answers..   Hugs and try not to worry too much, help is out there for you.


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## lyeag

Mackey Mouse said:
			
		

> I am not a doctor here but to me, your symptoms could be thryoid related....or sometime stress can do it as well..
> 
> Call your doctor, get a blood test and get some answers..   Hugs and try not to worry too much, help is out there for you.


I posted about my throid levels on  the CB  TSH is .03 T3 and T4 are still in the normal range.  I have been tested twice just to be sure and now I am waiting to hear back from my doctor.


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## Fan2CSkr

So thankful for this thread! I have been dealing with hyperthyroidism for over three years. Could be longer but thats when I had enough of the symptoms and got a dx. Its been a tough road trying to become euthyroid and I was almost there more than once. Had major surgery last year and nothing but thyroid issues since. I am having a total thyroidectomy next month. Hypo sucks (been there after too high a level of tapazole) and I am so nervous that after surgery I wont regulate. I do not want to gain any more weight not to mention the host of other problems in connection to that.

Losing hair can happen hyper/hypo. I have that too. 
Christine, sorry your doc is a jerk and you are waiting. I hope you hear soon and that all is still OK. Thanks again for starting this.


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## Blueeyes101817

I have been having thyroid problems since  i was 8 years old..i am now 22..

When I was 8, i had a tumor (benign) and half of my thyroid removed..When i was 15, a few more tumors grew back and they removed them and the other half of my thyroid--They then put me on Synthroid.  When I was 16, I had scar tissue revision..

Since my surgeries, especially the last 2, my thyroid levels go crazy--Every 6 months or so I have to get my levels changed..i go from being hypo to hyper all of the time.. After this semester, I will be getting some more tests done to see if there are any more tumors in there..i have been having a hard time holding my neck up again and my necks been really sore and ive been having difficulty swallowing...

Its nice to see this thread!


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## Christine

Blueeyes101817 said:
			
		

> I have been having thyroid problems since  i was 8 years old..i am now 22..
> 
> When I was 8, i had a tumor (benign) and half of my thyroid removed..When i was 15, a few more tumors grew back and they removed them and the other half of my thyroid--They then put me on Synthroid.  When I was 16, I had scar tissue revision..
> 
> Since my surgeries, especially the last 2, my thyroid levels go crazy--Every 6 months or so I have to get my levels changed..i go from being hypo to hyper all of the time.. After this semester, I will be getting some more tests done to see if there are any more tumors in there..i have been having a hard time holding my neck up again and my necks been really sore and ive been having difficulty swallowing...
> 
> Its nice to see this thread!



Are all you tumors malignant or benign?  And if you had your entire thyroid removed, why would tumors continue to grow back?  And if they did continue to grow back, wouldn't radioactive iodine treatment be the best thing for you?

Sorry for all the questions, just pondering things here...


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## Mackey Mouse

HI, hugs all around..

I know regulating is so difficult, you think you finally have it and then they tweak your meds again as your numbers are too high or too low and you have to start all over again.. 

Seems this one would be easy for doctors but it is not.......yikes.


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## kevinsmum

I have benn diagnosed with BPPV (vertigo),most people think this just affects you when going up heights but this isnt the case ,it affects your every day life ;u feel dizzy ,cant walk straight,feel sick and generally feel miserable,after reading some of your posts i feel guilty writing this as some of you hare having a much worse time than me.I have managed to keep working and been in my job for 10 years but i recently left to start a new job which would be better financailly and better hours but after 3 days i had a vertigo attack and they suggested it would be better i left so now i have no job and 2 young kids and am feeling sorry for myself as i said before i should feel lucky that im not as ill as some people but i just wish now that i had stayed in the job i was in ,still it was probaly fate and something better is round the corner for me ,sorry for moaning on


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## kevinsmum

sorry i meant to start a new thread ,my mind is not my own at the moment sorry


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## StephMK

Hey, great to see this thread. I've been hypo since my DD6, went on meds after DS4. My dad & GF are also. I'm now on the .88 synthroid which is my lowest dose ever & feeling the closest to normal finally! I have a lot of energy problems & some docs have just chalked it up to being a mom of 3. It's so hard to know what symptoms are related to thyroid & what to just life, stress, etc. Sugar is my stress reliever of choice but the cravings were much worse when I flipped over to hypo until my meds were lowered. The cravings are getting worse again & hair loss but so are my stress levels.

I finally found a great doc & sadly, we're moving away. If anyone wants a referral to a doc in NoVA, let me know! She actually takes the time to ask how I'm doing & listens to the responses, really looks at me & notices changes from visit to visit over a period of months.


lyeag -  your symptoms sound like ones I've had - definitely worth checking out.


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## kathleena

lyeag said:
			
		

> Hi guys, I am sure most of you saw my thread.  Am I crazy, or is hair thinning something that is caused by this????  I have really thick hair, or used to over the summer, now I am finding it everywhere.
> 
> My heart was really pounding for a few weeks, now not so much, I just feel jittery.  I have trouble sleeping and I have lost around 12 pounds.
> 
> I just want this weekend to get over with so I can call my dr.



Sounds just like hyper.  How are your muscles feeling?

When I was hyper - I didn't lose weight because my appetite was so huge, my eyebrows thinned and my hair did some, the palpitations were awful - they would just start up for no reason, I slept about 5 hrs a night, and the muscles were very weak - I could hardly climb stairs the thigh muscles hurt so much.

Oh and so irritable.


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## kathleena

I have Graves disease.

I was hypo for years - slighly only.  No doc would treat me.  I kept dr hopping, saying I had thyroid problem.  No one would test the antibodies.  Finally went hypo enough for someone to start me on synthroid.  Two years later I went hyper.

I have TSI antibodies (TSH receptor stimulating) and also I have TSH receptor blocking antibodies.  So when the TSI is high, I am hyper and when the other is high, I am hypo.

Hyper is MUCH worse than hypo in my opinion.

I opted not to take the RAI treatment and took anti-thyroid drugs instead.  On them for 18 months, I am now 15 months in remission.  I was just dx with slightly hypo so I'm back on synthroid.

I have a wonderful doc who is willing to treat me with just a little T4 to keep TSH around 1.0-1.5.

Also I have thyroid eye disease, although that is also inactive.

So - anyone wondering about
Antibodies
Anti-thyroid drug option vs RAI
Graves Disease
Thyroid Eye Disease

Please count on me for support.


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## kathleena

Oh I meant to add, my primary care docs office sends me a copy of my lab each time.

I just had the antibodies tested and the doc called me herself as the two were both a little high.

I love the office and my doc.

The endo I saw was great too.  They didn't mail the results, but they always called me.


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## kathleena

lyeag said:
			
		

> I posted about my throid levels on  the CB  TSH is .03 T3 and T4 are still in the normal range.  I have been tested twice just to be sure and now I am waiting to hear back from my doctor.



Oh ya, that's hyper.  Or at least getting there.

My TSH was <.01, T4 was normal and T3 was just above normal.  Your TSH will drop first, but the others will follow.

Did they test Free T4 and Free T3 or total?  Make sure they are doing free.


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## Christine

StephMK said:
			
		

> I finally found a great doc & sadly, we're moving away. If anyone wants a referral to a doc in NoVA, let me know! She actually takes the time to ask how I'm doing & listens to the responses, really looks at me & notices changes from visit to visit over a period of months.
> 
> 
> lyeag -  your symptoms sound like ones I've had - definitely worth checking out.



StephMK--

I would like the NoVA reference.  I am endo shopping!!


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## Mackey Mouse

Finding the right Endocrinologist is so key to keeping yourself healthy with thyroid issues... 

Sometimes, I hate to say this, but you have to take the one that does the less damage... I know that is a terrible thing to say, but with my daughter, I have not been wowed on Endo's....we actually had the head of the department as Mass General and he was not good with her, I have never seen anything like it.. She likes the one she has now at Boston Medical.....but she makes mistakes too.... Yikes.. Good luck!!!!!!!


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## hiwaygal

Good Morning fellow thyroid patients!!!  

I am glad this thread is here!

I am by no means an expert...but I was diagnosed hypo in December 2003. I was complaining of Carpal Tunnel Syndrome, and my doc decided to run tests. Turns out my TSH was well over 100!!!! No wonder I was feelin' kinda   .

My hypo is under control now (although we are still getting other problems worked out...I just found out I have sleep apnea  ) and I'm not quite as crazy as I was!

Anyway, I haven't had a chance to read through the posts here yet...but I wanted to pop in and send     to everyone here!

I know we can help each other out!!


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## lyeag

kathleena said:
			
		

> Oh ya, that's hyper.  Or at least getting there.
> 
> My TSH was <.01, T4 was normal and T3 was just above normal.  Your TSH will drop first, but the others will follow.
> 
> Did they test Free T4 and Free T3 or total?  Make sure they are doing free.



The tested Free T4 and Free T3 .  As for my muscles, maybe slightly weaker, not any sort of huge issues.


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## Fan2CSkr

lyeag said:
			
		

> The tested Free T4 and Free T3 .  As for my muscles, maybe slightly weaker, not any sort of huge issues.




The muscle thing kinda creeps up after being hyper for a bit. It wasnt a symptom of mine initally but sure is now.


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## lyeag

I called my dr. They are waiting for one lab to come back.  Something called Thyroid Auto AB     It says Serum next to it.  Anyone know what that is????


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## Christine

lyeag said:
			
		

> I called my dr. They are waiting for one lab to come back.  Something called Thyroid Auto AB     It says Serum next to it.  Anyone know what that is????



I believe that is an antibody test.  It is probably for diagnosing Graves' Disease.  Antibody tests take a bit longer than regular blood tests.


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## kathleena

lyeag said:
			
		

> I called my dr. They are waiting for one lab to come back.  Something called Thyroid Auto AB     It says Serum next to it.  Anyone know what that is????



Yes, that is a test for the serum (blood) levels of thyroid antibodies.  There are three types of thyroid autoantibodies that cause hyper:  These are thyroperoxidase (TPO), thyroglobulin (Tg) and the TSHreceptor (TRAb).  each one works differently.

I have the last one - of which there are three - blocking, binding, stimulating. I have stimulating and blocking - so I get both hyper and hypo.

How are your eyes?  Are they watering at all, or itchy.  Watering eyes means they are dry.  Some of the antibodies can cause thyroid eye disease.  It's not the hyper that causes it - as some think - it is the antibody.


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## lyeag

MY eyes are tired and feel kind of sticky.  Not dry, not teary, there isn't any discharge. Just sort of like it takes extra effort to blink.  Does that makes sense at all?????


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## kathleena

lyeag said:
			
		

> MY eyes are tired and feel kind of sticky.  Not dry, not teary, there isn't any discharge. Just sort of like it takes extra effort to blink.  Does that makes sense at all?????



Yes that is probably good.  Hopfully you won't have any eye involvement.  It will depend on which antibody you have (if any, hyper can be caused by other things.....)

Two months before I was dx, TSH was <.02, T4 and t3 were normal, my eyes were running like crazy - I had to keep a tissue with me at all times and dab my eyes.

Keep us posted on your labs.


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## lyeag

kathleena said:
			
		

> Yes that is probably good.  Hopfully you won't have any eye involvement.  It will depend on which antibody you have (if any, hyper can be caused by other things.....)
> 
> Two months before I was dx, TSH was <.02, T4 and t3 were normal, my eyes were running like crazy - I had to keep a tissue with me at all times and dab my eyes.
> 
> Keep us posted on your labs.


Nothing on the labs today.  I really hope I will find out what is going on tomorrow.  

I want to thank you guys for helping me through this.  I don't have much family left, and it is great to have you guys to hear what you went through.
It is nice to know I have  a place to come to.


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## Fan2CSkr

lyeag said:
			
		

> MY eyes are tired and feel kind of sticky.  Not dry, not teary, there isn't any discharge. Just sort of like it takes extra effort to blink.  Does that makes sense at all?????




I had/have annoying eye disturbances from the beginning but my symptoms have changed with treatment. At first my eyes teared al the time and felt as though I had sand in them. I also had an odd stare. I blinked less frequently than normal and felt as if my lids did not want to close or stay closed.

So, yes, the blinking makes perfect sense! Overall how have your palpitations been since the weekend? Are you feeling better? They havent prescribed medication yet right?

Some other common Graves symptoms:
Weight Loss
Increased Appetite
Nervousness
Restlessness
Heat Intolerance
Fatigue
Eye Irritation
Lessened Menstral Cycle
Smooth soft babylike skin
Hair changes
Tremors (especially when holding hands out straight in front of you)
Muscle Weakness
Increased Sweating

There are others but these are pretty common. Stay on top of your docs and get the answers you need.

kathleena,
I am enjoying and learning from reading your posts! Thank you for sharing.


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## lyeag

Fan2CSkr said:
			
		

> I had/have annoying eye disturbances from the beginning but my symptoms have changed with treatment. At first my eyes teared al the time and felt as though I had sand in them. I also had an odd stare. I blinked less frequently than normal and felt as if my lids did not want to close or stay closed.
> 
> So, yes, the blinking makes perfect sense! Overall how have your palpitations been since the weekend? Are you feeling better? They havent prescribed medication yet right?
> 
> Some other common Graves symptoms:
> Weight Loss
> Increased Appetite
> Nervousness
> Restlessness
> Heat Intolerance
> Fatigue
> Eye Irritation
> Lessened Menstral Cycle
> Smooth soft babylike skin
> Hair changes
> Tremors (especially when holding hands out straight in front of you)
> Muscle Weakness
> Increased Sweating
> 
> There are others but these are pretty common. Stay on top of your docs and get the answers you need.
> 
> kathleena,
> I am enjoying and learning from reading your posts! Thank you for sharing.




No, I haven't been given anything from the dr yet.  My cycle was pretty light the last few times, and I get tired much more easily.  It reminds of those days during the first trimester of being pregnant.  Exhausted by 7 pm.  I usually run circles around everyone else.  Up at 0600 and don't fall asleep unitl 2300 or so.  

My heart hasn't been too bad.  I do notice that in the mornings I feel great, no problems, but around 1300, it creeps up on me. In the morning my pulse, even with my coffee, can stay around75, but in the afternoon it pushes near 100.  

I do have the fine tremors, anxiety, and I do get warm pretty fast.  I have noticed that my temp is always around 99, when it used to always be low.

Send some pixie dust that I hear from them today!


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## Fan2CSkr

lyeag, I was thinking about you and wondering if they contacted you about your tests. Are you feeling better? I hope so.


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## lyeag

Fan2CSkr said:
			
		

> lyeag, I was thinking about you and wondering if they contacted you about your tests. Are you feeling better? I hope so.


Arghhhh.  I haven't heard yet.  The labs were in on Thurs, but dr wasn't.  Friday they called, but I was subbing, and I called and called and CALLED, but coudn't get through to the nurse.  Gotta love those military hospitals.  I left messages, tried to call to be told the nurse wasn't available, blah, blah, blah. Tomorrow I go to the cardiologist and should find out about the labs.  

The really funny thing is, my heart isn't pounding so much.  Maybe I am getting used to it??????????????????????   I am not as tired and that for sure is a good thing.


Thanks for thinking of me!


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## lyeag

Well, I have a little info.  I spoke to the nurse, she didn't tell me anything specific about the lab results.  I was told to schedule an ultrasound and have the labs run again in three weeks.  I have to wait until tomorrow to schedule so they can put through the paperwork at a local hospital. So it looks like nothing will be resolved before Disney.    Three weeks puts me at the 11th, and we are leaving the morning of th 16th.   I guess it really doesn't matter, with the holidays, it will be difficult to be seen unless it is an emergency.

I will post this afternoon after I get home from the cardiologist.  Gee, so much fun, and I am only 37.


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## Blueeyes101817

Christine said:
			
		

> Are all you tumors malignant or benign?  And if you had your entire thyroid removed, why would tumors continue to grow back?  And if they did continue to grow back, wouldn't radioactive iodine treatment be the best thing for you?
> 
> Sorry for all the questions, just pondering things here...



Sorry it took so long for me to answer--i was on vacation.

My tumors were benign...APparently, the tumors can continue to grow back , but i have no clue how!!
The radioactive iodine treatment is what the doctor mentioned, but we are waiting to get the next set of tests


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## Mackey Mouse

Hugs to you......Keep us informed on how it goes at the cardiologist today and on all future tests....My daughter was 23 when she battle papillary carcinoma of the thyroid.....but she has been clean for almost 10 years after her thyroidectomy......

Hang in there..


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## Christine

Blueeyes101817 said:
			
		

> Sorry it took so long for me to answer--i was on vacation.
> 
> My tumors were benign...APparently, the tumors can continue to grow back , but i have no clue how!!
> The radioactive iodine treatment is what the doctor mentioned, but we are waiting to get the next set of tests



That makes sense.  From what I am told, surgery alone will not remove *all* of the thyroid gland or thyroid cells (even though they tell you it is a total thyroidectomy).  I guess the tissue/cells that the surgeon leaves behind can continue to give you problems.


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## lyeag

Finally!  Some answers/help.  The cardiologist was GREAT.  Turns out the appt was for EKG/consult, they will do the echo in Jan.  Anyway, the cardiologist said the murmurs were benign and nothing to worry about.  I specifically told him we were going to WDW, and I asked him if I could go on the rollercoasters.  Turns out he has been to Disney and really is a big fan too.  Anyway, he said go right ahead and ride whatever I want.  YIPPPEEEE  

He also looked at me and my labs and then told me, Yep, you are hyperthyroid, and prescribed some beta blockers.  He gave me 50mg Toprol, and told me since my bp is good, if it makes me too lightheaded to cut them in half.  

So, in all I am feeling much better about things, but a little sad as he told me to cut out my caffine.  I was down to one cup of coffe in the am, but gee, now I have to go decaf????

Is this a necessity due to the beta blockers or just because of the thyroid thing?

Thanks for putting up with me and all my questions and drama.


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## Fan2CSkr

lyeag said:
			
		

> Finally!  Some answers/help.  The cardiologist was GREAT.  Turns out the appt was for EKG/consult, they will do the echo in Jan.  Anyway, the cardiologist said the murmurs were benign and nothing to worry about.  I specifically told him we were going to WDW, and I asked him if I could go on the rollercoasters.  Turns out he has been to Disney and really is a big fan too.  Anyway, he said go right ahead and ride whatever I want.  YIPPPEEEE
> 
> He also looked at me and my labs and then told me, Yep, you are hyperthyroid, and prescribed some beta blockers.  He gave me 50mg Toprol, and told me since my bp is good, if it makes me too lightheaded to cut them in half.
> 
> So, in all I am feeling much better about things, but a little sad as he told me to cut out my caffine.  I was down to one cup of coffe in the am, but gee, now I have to go decaf????
> 
> Is this a necessity due to the beta blockers or just because of the thyroid thing?
> 
> Thanks for putting up with me and all my questions and drama.




I'm glad you are finally starting to get some answers! The beta blocker is really just to help with symptoms it will not have any effect on lessening the hyperness of the thyroid but it WILL make you feel better and lessen palpitations. I was told to lessen my caffeine intake as well so now I just have my one cup in the AM and sometimes one in the afternoon. I dont drink any soda. You will soon learn your triggers. Mine are red wine, certain prepared chinese food dishes and a select few other prepared food items. Eating as wholesome as possible helps. Iodine (shellfish is a no no too) intake should be watched closely. You want to avoid it. Honestly I did not cut my one cup of coffee out a day but I suppose if I HAD to I would have. It is not an interaction of the coffee with the beta blocker but rather just that caffeine is a stimulant and being hyper is stimulant enough.

When will you see the endo or your primary doc? Has anyone told you how hyper you are? Since you mentioned feeling better I am guessing you arent too bad and thats a great thing. Just keep in mind this can and usually does fluctuate. You should be starting an anti thyroid medication ASAP this would be either Tapazole (Methimazole) or PTU (Propylthiouracil) since it takes some time to adjust in the blood and for you to feel the effects. Unless they may feel youarent so bad and this could be fleeting? Sometimes people can become hyper for a number of reasons and not all permanent. A virus can trigger this response and dissapate as quickly as it appeared to begin with.

Has anyone mentioned Graves? This is one of the major cause of hyperthyroidism. It takes some time to get all the answers and it can be a long journey dealing with the thyroid. Stay persistent and keep a journal of your symptoms this helps you and your docs greatly!

OK..stay well and keep us posted please and remember anything you have a question about we are here for you.


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## lyeag

Fan2CSkr said:
			
		

> I'm glad you are finally starting to get some answers! The beta blocker is really just to help with symptoms it will not have any effect on lessening the hyperness of the thyroid but it WILL make you feel better and lessen palpitations. I was told to lessen my caffeine intake as well so now I just have my one cup in the AM and sometimes one in the afternoon. I dont drink any soda. You will soon learn your triggers. Mine are red wine, certain prepared chinese food dishes and a select few other prepared food items. Eating as wholesome as possible helps. Iodine (shellfish is a no no too) intake should be watched closely. You want to avoid it. Honestly I did not cut my one cup of coffee out a day but I suppose if I HAD to I would have. It is not an interaction of the coffee with the beta blocker but rather just that caffeine is a stimulant and being hyper is stimulant enough.
> 
> When will you see the endo or your primary doc? Has anyone told you how hyper you are? Since you mentioned feeling better I am guessing you arent too bad and thats a great thing. Just keep in mind this can and usually does fluctuate. You should be starting an anti thyroid medication ASAP this would be either Tapazole (Methimazole) or PTU (Propylthiouracil) since it takes some time to adjust in the blood and for you to feel the effects. Unless they may feel youarent so bad and this could be fleeting? Sometimes people can become hyper for a number of reasons and not all permanent. A virus can trigger this response and dissapate as quickly as it appeared to begin with.
> 
> Has anyone mentioned Graves? This is one of the major cause of hyperthyroidism. It takes some time to get all the answers and it can be a long journey dealing with the thyroid. Stay persistent and keep a journal of your symptoms this helps you and your docs greatly!
> 
> OK..stay well and keep us posted please and remember anything you have a question about we are here for you.



O man.  No lobster, shrimp, or crab legs????  Nobody has said anything yet.  

I probably won't see my primary doc until after the results of the scan are in.  I do get the feeling that they either they caught this very early or the serum labs didn't come back as off as they thought they were.  I would think if the serum labs came back indicating Graves or anything else, they would have told me, but then again I am dealing with military health care.  Unless I get very lucky and get in quickly with the thyroid scan, I might not get any real answers to the thryoid question until after the holidays.  I hope not, but I am preparing myself for the possibility.

It would be great if this was just temporary.  With the military health care system, the wheels move pretty slowly.  I am just glad that I seem to be seeing some really  on the ball docs.  The cardiology group I went to was very impressive.


Thanks so much, Fan2CSkr, I really appreciate being able to come here and post and know that others have been through all this and can anwer some of my questions.


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## lyeag

Ok, I had the thryoid ultrasound on Tuesday.  I called today to get the results and was told that it showed thyroiditis-swelling.  No mention of any tumors, or nodules, so that is great news.

I am now scheduled for another scan with uptake on the 11th to find out why I am swollen. Hopefully, this is one of those types that just resolves itself over time.  I am still taking the beta blockers, and with those I am feeling much better.  I have not lost any more weight, (or gained), and I seem to have much more energy.

That is about it for now, but I thought I would share my good news on the scan.  Have a great weekend everyone!


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## luvwinnie

Hi, CHristine, just found this board! My SIL is going for a whole body scan,but first has to stop her thyroid meds for 10 days. She had thyroid cancer about 3 years ago and now has a growth in the area again. Her current dr. is worried because  he thinks her orig dr should have done radiation...he did not.


----------



## Blueeyes101817

Hi everyone-
I am going on Monday for an ultrasound to see if there are any problems with scar tissue/tumors in my neck (thyroid was removed completely when iw as 15)..so hopefully i have some good news!


----------



## Blueeyes101817

Well i have my results from the ultrasound.  There are no more tumors and/or scar tissue left in my neck! im happy about that, but then again, a little upset..
Ive been having alot of neck pain and if there was a cause of it, it would get fixed..now it seems that i will just have this pain my whole life


----------



## rie'smom

I'm happy to hear the first part. It's so hard when you have unexplained pain. Hugs and prayers that you find relief.


----------



## kathleena

Blueeyes101817 said:


> Well i have my results from the ultrasound.  There are no more tumors and/or scar tissue left in my neck! im happy about that, but then again, a little upset..
> Ive been having alot of neck pain and if there was a cause of it, it would get fixed..now it seems that i will just have this pain my whole life



Sorry to hear this.  If you never had PT after your surgery, your muscles may still be trying to heal from the surgery.  Do you know if it is the muscles in your neck?

Maybe some physical therapy could help that would teach you how to do stretches that will help the muscles in pain. I was having pain in my jaw/left side of face, and now after a few months of therapy to the muscles in my neck, it is starting to go away.

Another suggestion is to seek out an Osteopath who does Osteopathic Manipulation and/or Cranial/Sacral Therapy.  I have had that with the PT and it's amazing!  It's very gentle,  I can't believe what it has done for my neck.

I had PT and OMT in combination, and am now also getting medical massage therapy.


----------



## rpbert1

I was Diagonosed with Hyper about 3 years ago.
I had been having some problems for about 2 years prior to being diagnosed.
Heart palpitations and my legs and boby shaking or tremors. i had left it for quite some time, as my DM had been diagnosed in her forties [which i was at the time] with Parkinsons ,so kept putting of going to the doc. When i eventually went he said he had a good idea what it was , and he mentioned thyroid, but needed blood tests to be sure, asked a few questions , and my DM had hyper when she was younger, so he told me it can be genetic.
Blood results came back positive, i was on Beta Blockers and other medication for about 2 years, but had problems with the meds.
They eventually gave me Radio Iodine treatment, i am now Hypo and on Thyroxine to balance the levels out and have not been to bad this last year.
 Before i got it sorted i had really bad problems , i am sure you can relate to them, i had really bad mood swings if i could call it that. How my DW is still with me i will never know, as i said to her ,if it had been the other way around i would have left her long ago.
I could literally have murdered people for the silliest things.Sometimes  i would just go of in a rage, other times i would not be able to sleep and eventually explode , and i tried to explain to people,that you have no control over it, its as if someone else is controlling you.
thankfully my levels are normal for the last 18 months and i get check every year now.


----------



## Blueeyes101817

rie'smom said:


> I'm happy to hear the first part. It's so hard when you have unexplained pain. Hugs and prayers that you find relief.





kathleena said:


> Sorry to hear this.  If you never had PT after your surgery, your muscles may still be trying to heal from the surgery.  Do you know if it is the muscles in your neck?
> 
> Maybe some physical therapy could help that would teach you how to do stretches that will help the muscles in pain. I was having pain in my jaw/left side of face, and now after a few months of therapy to the muscles in my neck, it is starting to go away.
> 
> Another suggestion is to seek out an Osteopath who does Osteopathic Manipulation and/or Cranial/Sacral Therapy.  I have had that with the PT and it's amazing!  It's very gentle,  I can't believe what it has done for my neck.
> 
> I had PT and OMT in combination, and am now also getting medical massage therapy.



Thanks..
It could be the muscles in my neck..the muscles were cut for one of the surgeries..i wonder if insurance would cover it this long after the surgery though?


----------



## bengalbelle

I've lurked here a bit and guess I'll join in.

I was diagnosed with hypothyroidism when I was 15 (almost 20 years ago).  I've been tired all the time, for as long as I can remember, and that's always my #1 complaint.  I was actually diagnosed because my mom took me to the doctor thinking I had chronic fatigue syndrome.

I delivered my second child about 4 months ago and my levels were fine at that time (I've been on Synthroid since I was diagnosed).  Lately, though, I've been experiencing lots of symptoms that make me believe it's not functioning properly.  Excessive fatigue, dry, dry skin, hair falling out (though that could be a post partum issue), muscle aches and pains (particularly in the joints), muscle spasms, and cold hands and feet.

Last night I started breaking out in hives and went to the doctor today.  He suggested that I might have Hashimoto's Disease, which can cause hives.  I'll have new bloodwork drawn next week to check my thyroid levels.  

I've been letting my OB and Primary Care Physician treat me because my Endo is just too conservative.  He'll only look at lab results and not how I'm feeling.  Both my OB and PCP will bump it up a little.  

The most frustrating thing for me, is that they never seem to get it regulated for any extended period of time.  I've often bounced around from hypo to hyper without changing the dosage of the meds.  Then they'll up the dosage and it will work for a while, then I start the cycle all over again.

My father's thyroid quit working completely, so I'll probably be facing that in the years to come.

 to everyone dealing with this.


----------



## Blueeyes101817

bengalbelle said:


> I've been letting my OB and Primary Care Physician treat me because my Endo is just too conservative.  He'll only look at lab results and not how I'm feeling.  Both my OB and PCP will bump it up a little.
> 
> .



Ive been having that problem with 2 or 3 endocrinologists around here as well.  I am having my primary care physician oversee my thyroid issues.  
I went to the endocrinologist and he said my levels were in the normal range, but i was feeling so "off."  When i told him i felt "low' he said that it was not possible.  I went to my primary dr and she checked levels and was very helpful--she told me that i have never been "typical" with my thryoid problems so wh ywould i start now..She gave me a new dose and i f elt a ton better!

I hope they figure out what is wrong dawn!


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## flying_babyb

Omg can i join you? My thyroid is well, working now. I have been underactive at least 8 times, hyperactive twice and now normal. They cant get it right.  Nice to find others with T problems. I worry daily about getting thyroid cancer. We have a family history.


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## Hixski

Hypothyroidism here. It has caused me to put on over a 100 lbs over the course of 20 years. I walk on a treadmill every chance I can get. It does not do a bit of good. (I have firm fat though) They check me everytime I go to the doctor and it is always in the normal range. Well I sure don't feel normal. I have had several doctors and they just tell me I am healthy. (Very healthy for someone 100 lbs overweight.) I wish someone could help me lose the weight.


----------



## lyeag

Hi guys, I finally got the results of the uptake scan and it says it was normal????  The last labs I had done were just before the scan and the TSH was like 33.  I don't get it. How do you go from .03 to 33 without any type of thyroid medication?????

 The nurse called this week telling me to do more labs.  I just wish I knew what is going on.  I am so sick of it.


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## TDC Nala

Hey look, a thyroid thread. I have Hashimoto's disease.

I think I need my synthroid dosage adjusted, it was adjusted last year and the symptoms I had before diagnosis are returning. My appointment is in February.


----------



## Christine

lyeag said:


> Hi guys, I finally got the results of the uptake scan and it says it was normal????  The last labs I had done were just before the scan and the TSH was like 33.  I don't get it. How do you go from .03 to 33 without any type of thyroid medication?????
> 
> The nurse called this week telling me to do more labs.  I just wish I knew what is going on.  I am so sick of it.




33!!!  Are you sure that was your TSH?  That is way too hypo.  I think you need a repeat!


----------



## kathleena

Hixski said:


> Hypothyroidism here. It has caused me to put on over a 100 lbs over the course of 20 years. I walk on a treadmill every chance I can get. It does not do a bit of good. (I have firm fat though) They check me everytime I go to the doctor and it is always in the normal range. Well I sure don't feel normal. I have had several doctors and they just tell me I am healthy. (Very healthy for someone 100 lbs overweight.) I wish someone could help me lose the weight.



Are you getting copies of your labs Hixski?  The "old normal" is not the "new normal".  Get copies of your labs - try to get the last 3 or 4 and then report back with 1) the TSH value 2) the range that the lab uses for TSH 3) the same if they took T4 4) and if they did take T4, was it total T4 or Free T4?

If you come back with those answers, either I or someone else here can help explain or maybe give more advice.

Also - {{{trying to say this gently and with hugs}}} - yes, being hypo does cause some weight gain, but it's only about 10-15 lbs.  What can cause significant, uncontrollable weight gain are problems with the pituitary (Cushing's) and other endocrine disorders that would not be detected with a TSH test (cortisol, insulin resistance etc.......).  It could be that they need to start checking for other things......

Don't despair.  Check into your labs and come back......


----------



## kathleena

lyeag said:


> Hi guys, I finally got the results of the uptake scan and it says it was normal????  The last labs I had done were just before the scan and the TSH was like 33.  I don't get it. How do you go from .03 to 33 without any type of thyroid medication?????
> 
> The nurse called this week telling me to do more labs.  I just wish I knew what is going on.  I am so sick of it.



TSH numbers move up and down very slowly.  Get copies of your labs that supposedly show .03 and 33.  Report back with the TSH number and the lab range.  Also report if they measured T4 and the number and range.  Find out if it was Free T4 or Total T4.

And while you are dealing with this - I have one piece of advice - always get a copy of your lab report.


----------



## lyeag

Christine said:


> 33!!!  Are you sure that was your TSH?  That is way too hypo.  I think you need a repeat!



oops 23, not 33.  I went back and double checked.  Anyway, that is still a huge jump in one month.


----------



## lyeag

kathleena said:


> TSH numbers move up and down very slowly.  Get copies of your labs that supposedly show .03 and 33.  Report back with the TSH number and the lab range.  Also report if they measured T4 and the number and range.  Find out if it was Free T4 or Total T4.
> 
> And while you are dealing with this - I have one piece of advice - always get a copy of your lab report.



I found the latest printout of my labs.  It shows my labs from Dec 6 and Nov 9

Nov 9
Free  T4  1.20
Free T3    3.28
TSH           .03


Dec 6

Free  T4  .47                    (.7-1.9)
Free T3   1.33                   (1.45-3.48)

TSH    23.02                     (.49-4.67)


----------



## kathleena

lyeag said:


> I found the latest printout of my labs.  It shows my labs from Dec 6 and Nov 9
> 
> Nov 9
> Free  T4  1.20
> Free T3    3.28
> TSH           .03
> 
> 
> Dec 6
> 
> Free  T4  .47                    (.7-1.9)
> Free T3   1.33                   (1.45-3.48)
> 
> TSH    23.02                     (.49-4.67)



Wow that is a huge difference!    I wonder if there was a lab mix up with your results????  I've just never seen or heard of such a big jump before!

The Nov 9th is moderately hyper, and assuming it was the same ranges, your FT 3 and FT 4 weren't out of range yet.  That's why they did the uptake.

But everything has tanked on the second one?  I'm so sorry - you must feel like cr*p!!!!!  They need to get some synthroid into you.

Did they test your antibodies?
Did they say anything at all about the difference in the labs?  Suggest that you have a third one maybe?

They need to test the TPO and oh gee the second one escapes me at the moment.  They also should test the TSI antibodies - although that test is much more expensive than the other two, so not unless they really suspect you have Graves.

Did they mention nodules or doing a scan?  Sorry if you talked about these things before and I forgot.

I'm just    !


----------



## kathleena

Oh and good for them for doing both the FT4 and FT3!!!!!


----------



## lyeag

kathleena said:


> Wow that is a huge difference!    I wonder if there was a lab mix up with your results????  I've just never seen or heard of such a big jump before!
> 
> The Nov 9th is moderately hyper, and assuming it was the same ranges, your FT 3 and FT 4 weren't out of range yet.  That's why they did the uptake.
> 
> But everything has tanked on the second one?  I'm so sorry - you must feel like cr*p!!!!!  They need to get some synthroid into you.
> 
> Did they test your antibodies?
> Did they say anything at all about the difference in the labs?  Suggest that you have a third one maybe?
> 
> They need to test the TPO and oh gee the second one escapes me at the moment.  They also should test the TSI antibodies - although that test is much more expensive than the other two, so not unless they really suspect you have Graves.
> 
> Did they mention nodules or doing a scan?  Sorry if you talked about these things before and I forgot.
> 
> I'm just    !



From what I have been told, everything is negative.  No nodules, the antibody was ok, the uptake was fine..... I am to go get another set of labs drawn today.  I feel very tired, cold, and FAT.  I gained back all 15 pounds  thanks to the dining plan and whatever is going on with me.  I haven't seen my dr in almost 3 months, I just keep getting calls to go take different tests or labs.  I am just really sick of it all.


----------



## kathleena

lyeag said:


> From what I have been told, everything is negative.  No nodules, the antibody was ok, the uptake was fine..... I am to go get another set of labs drawn today.  I feel very tired, cold, and FAT.  I gained back all 15 pounds  thanks to the dining plan and whatever is going on with me.  I haven't seen my dr in almost 3 months, I just keep getting calls to go take different tests or labs.  I am just really sick of it all.



   

I think you should pressure them about the labs results being so different - I think you shouldn't be charged for at least one of them.  I was thinking of this when I was taking my synthroid this am and wondering if the lab may have used the wrong test tube (they have different substances in the tubes depending on the test) or switched your lab results.  It just seems wrong to me.  When I have a dose change, the doc rechecks me in 6-8 wks as it takes that long to get just a small change.  She started me on just .25 synthroid and TSH moved from 3.23 to 2.1 in 8 weeks.  And T4 only moved from 1.0 to 1.1.

Even when I was hyper, the docs office always told me - it takes a long time to move TSH and it moves very slowly.  That lab - the one with the TSH at 22 and the T4 and T3 correspond to your symptoms.  With the first lab, you may not have had any symptoms of hyper yet as your T3 and T4 were normal.  I had a really low TSH and no symptoms for 4 months before all the heart palpitations started.  All I had was a really HUGE appetite without gaining weight.

   Thyroid problems really stink!


----------



## lyeag

Well, we are military, so I am not paying for any of this.  At least there is a bright side!  I was put on beta blockers in Nov due to rapid heartbeat.  I was losing weight hand over fist and was just so jittery.  As soon as the beta blockers kicked in, my weight started to creep up.  The dining plan did the rest to my weight.

Hopefully, the labs today will shed some light on what is happening.  I can call to get the results tomorrow, or go in and get a print out.


----------



## Tazicket

Hi!  I was just diagnosed with hypothyroidism today and stumbled on this thread.  My Dr's office called in a prescription for me today and I'll start taking it tomorrow morning.  I'm supposed to go back at the end of February to have more blood drawn and checked to see how the meds are working.  I'm kind of excited that they know what's wrong with me now and can give me meds to fix it.  

Did anybody else with hypo feel starving all the time before going on the regulatory meds?  Lately, it seems like I'm always hungry regardless of what I eat.  Just wandering if it's related to the thyroid stuff or in my head b/c I've been freaking out wondering what I have for the last couple of weeks.

Thanks for the thread OP!


----------



## kathleena

lyeag said:


> Well, we are military, so I am not paying for any of this.  At least there is a bright side!  I was put on beta blockers in Nov due to rapid heartbeat.  I was losing weight hand over fist and was just so jittery.  As soon as the beta blockers kicked in, my weight started to creep up.  The dining plan did the rest to my weight.
> 
> Hopefully, the labs today will shed some light on what is happening.  I can call to get the results tomorrow, or go in and get a print out.



Oh ya, that is hyper - jittery, palps and weight loss.  But the beta blockers are just to control your heart rate nad the palps - they shouldn't affect your weight at all.

I swung back and forth - mild hyper and mild hypo for years.


----------



## lyeag

The nurse called today to schedule another round of labs in two weeks.

Yesterday's numbers were:  (the ranges are the same as the above post)

T3  1.62         
T4 .67

TSH 15.36

I asked the nurse about the huge difference in the numbers in the TSH, and she said the dr just thinks it is thyroiditis.  The dr is just keeping an eye on the numbers and hoping it is going to resolve itself over time.  I sure hope so.  It looks like the numbers are going in the right direction.


----------



## Christine

lyeag said:


> The nurse called today to schedule another round of labs in two weeks.
> 
> Yesterday's numbers were:  (the ranges are the same as the above post)
> 
> T3  1.62
> T4 .67
> 
> TSH 15.36
> 
> I asked the nurse about the huge difference in the numbers in the TSH, and she said the dr just thinks it is thyroiditis.  The dr is just keeping an eye on the numbers and hoping it is going to resolve itself over time.  I sure hope so.  It looks like the numbers are going in the right direction.



Okay, so now you are going back down.  Wow!!


----------



## kathleena

lyeag said:


> The nurse called today to schedule another round of labs in two weeks.
> 
> Yesterday's numbers were:  (the ranges are the same as the above post)
> 
> T3  1.62
> T4 .67
> 
> TSH 15.36
> 
> I asked the nurse about the huge difference in the numbers in the TSH, and she said the dr just thinks it is thyroiditis.  The dr is just keeping an eye on the numbers and hoping it is going to resolve itself over time.  I sure hope so.  It looks like the numbers are going in the right direction.



Did he say what kind he thought it was?  Is this an endo or an internal medicine.  I'm thinking endo because you had mentioned the uptake.

http://cpmcnet.columbia.edu/dept/thyroid/thyroiditis.html


----------



## Fan2CSkr

lyeag said:


> The nurse called today to schedule another round of labs in two weeks.
> 
> Yesterday's numbers were:  (the ranges are the same as the above post)
> 
> T3  1.62
> T4 .67
> 
> TSH 15.36
> 
> I asked the nurse about the huge difference in the numbers in the TSH, and she said the dr just thinks it is thyroiditis.  The dr is just keeping an eye on the numbers and hoping it is going to resolve itself over time.  I sure hope so.  It looks like the numbers are going in the right direction.



With a TSH level that you were at its amazing you got out of bed in the AM. I remember you were put on the beta blockers but no anti thyroid meds right? I have suffered thyroiditis quite a few times I have/had Graves disease. Whenever I had a bout my hyper symptoms worsened. 

Like mentioned already ask for the thyroid antibodies test. I am familiar with situations where a person can have a bout with hyperthyroidism only to become hypo shortly after. In that case it really isnt Graves at all just hyperthyroidism that's cause has yet to be determined.

I hope you are feeling better and do not have to deal with these ups and downs much longer! 

Me on the other hand recently had a total thyroidectomy due to uncontrolled Graves and I dont know if I'm coming or going. I have my first blood test since the surgery next week and I am so anxious to see where I am at. Weird to be on synthroid now after taking anti thyroid meds for so many years. If its a possibility I feel hypo/hyper!


----------



## Mackey Mouse

I am just posting here in support of you all.. I do not have thyroid disease but my daughter survived thyroid cancer, thyroidectomy and lives her life on levoxil.   Her doctor changed her meds when the synthroid scare happened a while back.. Anyway, I want to say here, I can only imagine how difficult this is for all of you and please know that we support you in anyway we can with a hug or words of advice.. 

I am really glad there are some good veteran thyroid people who can talk the lingo for those who need the help... I know enough, but not enough to say too much about levels.. 

I will say this, know your body, know how you feel on whatever dosage they give you and speak up for what you need... I cannot tell you how many times they have fooled with dd's meds and cause such huge issues....too many to name.. so speak up if you do not think the dosage is correct, you know your own body.. 

Hugs.


----------



## lyeag

Fan2CSkr said:


> With a TSH level that you were at its amazing you got out of bed in the AM. I remember you were put on the beta blockers but no anti thyroid meds right? I have suffered thyroiditis quite a few times I have/had Graves disease. Whenever I had a bout my hyper symptoms worsened.
> 
> Like mentioned already ask for the thyroid antibodies test. I am familiar with situations where a person can have a bout with hyperthyroidism only to become hypo shortly after. In that case it really isnt Graves at all just hyperthyroidism that's cause has yet to be determined.
> 
> I hope you are feeling better and do not have to deal with these ups and downs much longer!
> 
> Me on the other hand recently had a total thyroidectomy due to uncontrolled Graves and I dont know if I'm coming or going. I have my first blood test since the surgery next week and I am so anxious to see where I am at. Weird to be on synthroid now after taking anti thyroid meds for so many years. If its a possibility I feel hypo/hyper!



I am pretty sure I had the antibody test already in Nov.  I had one lab value that came in a few days later than the others that they had to send away for.  I don't remember hearing anything about the results....Yes, they did put me on the beta blockers, but nothing else.  

I don't know what is happening really. I get the feeling they think it is tied to some viral trigger. ( I had a sinus infection when this all started)  When the numbers were really high I just felt like those early weeks of pregnancy when you don't have any energy.  Today I am feeling pretty normal.  (whatever that is... LOL)  

I am just glad so far it isn't anything major.  I really feel for you with a thyroidectomy.  That is probably my greatest fear.  That feeling of being dependent on the meds for the rest of your life and have to constantly be checking for changes.   Hugs to you that they get you evened out quickly.  We are here for you.

Thanks everyone for helping me sort this out!


----------



## Fan2CSkr

Thyroiditis causes temporary hyperthyroidism, usually followed with hypothyroidism (underactive thyroid). Thyroiditis is an inflammation of the thyroid gland. There are three types of thyroiditis: 

Hashimoto's thyroiditis 
subacute granulomatous thyroiditis 
silent lymphocytic thyroiditis 

I would guess you have subacute granulomatous thyroiditis. It basically translates to a self limited thyroid condition that usually follows an upper respiratory viral infection (YES, could be the sinus infection!) The good news is that 90 to 95% of patients return to normal thyroid function. It sounds to me like you have already progressed to the second phase and actually with your TSH level lowering on your way to becoming Euthyroid (normal thyroid gland function). Laboratory tests in the later phase of disease may show:

*High serum TSH level 
*Low serum free T4 
You have both.


It sure sounds like it is on its way to resolving itself without any need for medications. I am so pleased that you received proper medical care and testing, consider yourself lucky. Many are not as fortunate. So if I were you I would continue to be diligent with your blood tests track your levels and hope all continues on this predicted path for your dx. I would also ask your doc if you need to stay on the beta-blockers. 

I hope with each passing day you continue to feel better! Thank you also for the well wishes.


----------



## OKWAnneMarie

kathleena said:


> Oh ya, that is hyper - jittery, palps and weight loss.  But the beta blockers are just to control your heart rate nad the palps - they shouldn't affect your weight at all.
> 
> I swung back and forth - mild hyper and mild hypo for years.






I was just reading Dr. Oz's book (YOU ON A DIET), and he explained that Beta Blockers DO affect weight losss.  

When you are taking Beta Blockers, it is very hard to lose weight.  I was NOT happy to read that, since I have both a thyroid problem and I take a beta blocker, but it does explain why it is so hard for me to lose weight.


----------



## lyeag

ok, new labs in

Free T3  2.17  (1.45-3.48)
Free T4  .67   (.7-1.9)

TSH  8.19   .49-4.67
The Dr now wants to put me on synthroid.  I will go pick it up later and report back on how much.  I am suprised with the numbers still moving around that much that he is giving me something.  Two weeks ago the TSH was at 15.  

Anyway, I am to do get labs done in 6 weeks and schedule a follow up with him.


----------



## Fan2CSkr

lyeag said:


> ok, new labs in
> 
> Free T3  2.17  (1.45-3.48)
> Free T4  .67   (.7-1.9)
> 
> TSH  8.19   .49-4.67
> The Dr now wants to put me on synthroid.  I will go pick it up later and report back on how much.  I am surprised with the numbers still moving around that much that he is giving me something.  Two weeks ago the TSH was at 15.
> 
> Anyway, I am to do get labs done in 6 weeks and schedule a follow up with him.



He's giving you something because you have gone far too long already with a TSH level that is too high. Your T3 and T4 can stand a boost too. I feel my best with a suppressed TSH and my T3 and T4 pushing the upper ends of their ranges. While everyone is different, your TSH is just too high. I would be cold very very tired and feeling like crap overall. It is totally not unusual for you to now be hypo following your bout with hyper. Most people will stay medicated on thyroid replacement for life after that happens. Be thankful, in a few weeks you should be feeling much better and on your way to becoming euthyroid! The next set of labs is six weeks, the amount of time it takes to get a steady level of synthroid in your system. Good Luck and keep us posted!


----------



## lyeag

I am just sort of confused.  The last time I spoke to the nurse, she said it was thryoiditis and the dr was just watching to see if it resolves itself.     With the numbers, specifically the TSH, making yet another huge jump, wouldn't you wait another 2 weeks to see if they move more?  Like I mentioned, the TSH went down another 7 points.  


I am feeling cold and tired most days, but I am functioning alright.  Maybe I've been feeling like crap for so long, that I can't tell the difference anymore.


----------



## Mackey Mouse

Hugs Lyeag... I do hope they figure this out for you and get you straightened out.. 

I am not so good on the numbers, now if my daughter was reading this thread, she would be able to tell me exactly where you are with your levels.. 

I do hope the synthroid helps with the symptoms and you start feeling like your old self real soon..


----------



## Fan2CSkr

lyeag said:


> I am just sort of confused.  The last time I spoke to the nurse, she said it was thryoiditis and the dr was just watching to see if it resolves itself.     With the numbers, specifically the TSH, making yet another huge jump, wouldn't you wait another 2 weeks to see if they move more?  Like I mentioned, the TSH went down another 7 points.
> 
> 
> I am feeling cold and tired most days, but I am functioning alright.  Maybe I've been feeling like crap for so long, that I can't tell the difference anymore.



Nov 9
Free T4 1.20
Free T3 3.28
TSH .03


Dec 6

Free T4 .47 (.7-1.9)
Free T3 1.33 (1.45-3.48)

TSH 23.02 (.49-4.67)

Jan -07
Free T3 2.17 (1.45-3.48)
Free T4 .67 (.7-1.9)

TSH 8.19 .49-4.67

I added your recent labs to your previous two. 

Since your levels are rebounding I dont see why you cant ask your Doctor to wait another two weeks and test again before making a decision. Based on your results I totally agree with you.


----------



## lyeag

Fan2CSkr said:


> Nov 9
> Free T4 1.20
> Free T3 3.28
> TSH .03
> 
> 
> Dec 6
> 
> Free T4 .47 (.7-1.9)
> Free T3 1.33 (1.45-3.48)
> 
> TSH 23.02 (.49-4.67)
> 
> 
> January 10th labs:
> T3 1.62
> T4 .67
> 
> TSH 15.36
> 
> Jan 25-07
> Free T3 2.17 (1.45-3.48)
> Free T4 .67 (.7-1.9)
> 
> TSH 8.19 .49-4.67
> 
> I added your recent labs to your previous two.
> 
> Since your levels are rebounding I dont see why you cant ask your Doctor to wait another two weeks and test again before making a decision. Based on your results I totally agree with you.



I added in my labs from the 10th, and now you can really see the pattern of them coming down - especially the tsh.  I am going to get the script after 4, and hopefully I can catch the nurse then.


----------



## teacups

Christine said:


> Hi Liz!
> 
> I hate being hyperthyroid.  I know many/most people complain of HYPOthyroidsim, but I find being hyper to be much more intolerable.  I've been severely hypo (TSH well over 100) and mildly hyper and it's the hyper side that gives me the most discomfort.  I hate the racing heart and palpitations.



Try gaining 50 pounds in one-two months, loosing all energy to the point of your kids practically existing without you, falling into an ugly deep depression that really hangs in there thru thick and thin, as if THIN is even a word you'd ever mumble again! your skin flaky in ugly places, forgetting everything and knowing your not insane but fearing you are starting to become very stupid, rememebering the person you used to be and actually missing yourself! OH and the best part is the fact that your labs come back "within normal range".    I'm not doggin on HYPER people, I was one of them once until the doctor told me to swallow poison and I did it...  I would go back to hyper/graves in A FLASH!    Hypo robs you of the personal resourses you need to help yourself.  It's degrading and humiliating and ugly. And the doctors have never ever, ever been any help to me with this.   When I was hyper I could freak myself out with the racing heart badly... but I would rather have that today, believe me. Well wait... I'd rather have NEITHER!  THEY BOTH SUCK!!!


----------



## Fan2CSkr

teacups said:


> Try gaining 50 pounds in one-two months, loosing all energy to the point of your kids practically existing without you, falling into an ugly deep depression that really hangs in there thru thick and thin, as if THIN is even a word you'd ever mumble again! your skin flaky in ugly places, forgetting everything and knowing your not insane but fearing you are starting to become very stupid, remembering the person you used to be and actually missing yourself! OH and the best part is the fact that your labs come back "within normal range".    I'm not doggin on HYPER people, I was one of them once until the doctor told me to swallow poison and I did it...  I would go back to hyper/graves in A FLASH!    Hypo robs you of the personal resourses you need to help yourself.  It's degrading and humiliating and ugly. And the doctors have never ever, ever been any help to me with this.   When I was hyper I could freak myself out with the racing heart badly... but I would rather have that today, believe me. Well wait... I'd rather have NEITHER!  THEY BOTH SUCK!!!




Do you have Graves? When were your last labs? What are the results? Do you take any thyroid hormone replacement? What, and what is the dose? I'm sorry, I remember reading and commenting on one of your posts but don't recall the details. When did you have your thyroid ablated?

I've been hyper to the point of thyroid storm. That's a hyper most will never know, thankfully. Me personally, I would take hypo over that hell any day but I agree, I would rather have neither! Have any great hospitals nearby? Sounds like its time to take matters into your own hands and get yourself well! Oh and that hypo "brain fog" was just unbelievably horrendous!


----------



## rie'smom

Is everyone here on Synthroid? I take Armour 3grains. Synthroid didn't work for me at all. It make my blood levels read ok but I felt like-well you know. Just letting anyone w/Synthroid problems know there's an alternative. Many doctors don't like it because they feel the doses aren't constant but they have to go through stringent testing too. In fact, this was the drug used to treat Hypothyroidism for about 100 years until Synthroid was formulated. It's been a miracle in my life and in my husbands.


----------



## Mackey Mouse

I have heard of the Armour medication, wonder why more endocrinologists do not use it.  Wait, I bet I know the answer the big drug companies that make the others lobby more for the doctors to use them.    My daughter's doctor took her off synthroid when there was talk that not every drug company was making it the same so everyone was getting a different dosage, although it was suppose to be let's say 5 mgs....She takes Levoxil, but I have to say people who live without thyroid deal with the constant of keeping those levels stable and if they are not, it is so unpleasant for them.. 

Hugs to you all, I understand, believe me I do understand.


----------



## Christine

lyeag said:


> I am just sort of confused.  The last time I spoke to the nurse, she said it was thryoiditis and the dr was just watching to see if it resolves itself.     With the numbers, specifically the TSH, making yet another huge jump, wouldn't you wait another 2 weeks to see if they move more?  Like I mentioned, the TSH went down another 7 points.
> 
> 
> I am feeling cold and tired most days, but I am functioning alright.  Maybe I've been feeling like crap for so long, that I can't tell the difference anymore.



Yeah, I would agree that one would think he would wait another 2 weeks.  But, as the other poster said, you've been hypo for a bit too long now.  Hopefully he is just giving you a very small amount of thyroid hormone.

After one of my thyroid cancer treatments, my TSH was at about 145.  I went back on my medication and after 6 weeks, I felt fabulous.  I was shocked that my TSH was at 8.0.  I felt great at that number.


----------



## Christine

Mackey Mouse said:


> I have heard of the Armour medication, wonder why more endocrinologists do not use it.  Wait, I bet I know the answer the big drug companies that make the others lobby more for the doctors to use them.
> Hugs to you all, I understand, believe me I do understand.




I participate on a thyroid cancer survivors list and this issue comes up often.  One of the moderator/doctors on the list is EXTREMELY vocal about using Armour (he is against it) and feels that any "self-respecting" endocrinologist would not use it.  I wish I could find one of his "rants" about it, but I can't.  It seems to me that some of his concerns are valid, but I just can't remember them.  As it is, I've worked with 3 different endos and NONE of them would touch the stuff.


----------



## rie'smom

I forot too that a prescription of Armour is about 15.00 w/out insurance. Armour is dessicated porcine(pork) thyroid. It's complete T3/T4 which of  course means instead of 2 meds that you can take only 1. If Synthroid or the other meds work,great but if they don't,try something else. It angers me when docs refuse to consider other meds. It's like a male OB who totally doesn't get menopausal symptoms,except to throw estrogen at you-take this and shut-up. They count too much on the lab results and pay no attention to symptoms.
This is a website that I've found. You may or may not find it good reading: /www.stopthethyroidmadness.com/


----------



## Christine

Okay, here is the info from one this country's "top" endocrinologists.  Take it or leave it, but many endos feel this way:

Levothyroxine (T4) is the major product
of the thyroid gland and is essentially a
prohormone with minimal (if, debatedly, any)
activity of its own. It has a long and stable
half-life in the blood (one week) and is
transported into cells where it is converted into
T3, which directly interacts with receptors which
bind DNA and regulate genes. All of this has
been well-studied and constitutes a vast medical
and molecular biology literature. For patients
without thyroid glands, the ingestion of a pure
levothyroxine product provides ALL of the
necessary thyroid hormone products consequent to
normal metabolic and enzymatic bodily processes.

There is absolutely no conceivable role
for taking Armour thyroid extract or mixtures of
T3 and T4. Most of my colleagues and I would be
happy if the FDA removed these items from
production. Thyroid extract is a mixture of T4,
T3, thyroglobulin, and many other breakdown
products with erratic pharmacokinetics and nearly
impossible to accurately titrate for suppression
of TSH. There is no magical or supernatural or
any advantage to this animal product. Armour
thyroid provides a mixture of hormones that are
produced in pigs, not in humans. The only
reasonable medication is pure levothyroxine
(choose your brand). Cytomel is useful for the
first four weeks of the six-week levothyroxine
withdrawal period in preparation of I-131 scans
and/or therapy. It also has very limited utility
for supplemental treatment of myxedema coma
unresponsive to levothyroxine. (A medical study
from a couple of years ago suggesting T3
supplementation of levothyroxine therapy for
hypothyroidism is not generally accepted by
thyroidologists, for many good reasons, and
requires a great deal of confirmatory research
before any of its suggestions be used for
patients.)

There is nothing gained by choosing
medications based on "natural" extracts or
processes. Such items, frequently found in
"Health Food" stores, are often dangerous,
impure, untested, and of unproven value. Their
designation as a "natural" product merely
protects their manufacturers from having to
justify their purity, safety, and efficacy to the
FDA (which is empowered to protect us from
"pharmaceuticals" only), permitting great
financial profits at the expense of the public.
Many new drugs, such as Taxol (from the Yew
tree), and old drugs, such as penicillin (from
mold), come from sources in nature. In
comparison to "Health Food" shenanigans, these
natural products are stringently purified and
tested prior to making them available as
medications. It is possible that a few of the
"natural" products may have a fraction of a
percent of a useful agent, mixed in with far
larger quantities of toxic and useless "natural"
chemicals. Next time you go to these unregulated
"Health Food" stores, consider that the poison on
the darts used by various native peoples did not
come from a drug store.

Finally, in the wake of experience with
"mad cow" disease in England and the known
presence of prion diseases in cows, sheep,
humans, and other mammals, anyone who would
knowingly take an animal product over a
chemically pure synthesized compound should have
their head examined (for spongiform
encephalopathy).


----------



## lyeag

Christine said:


> Yeah, I would agree that one would think he would wait another 2 weeks.  But, as the other poster said, you've been hypo for a bit too long now.  Hopefully he is just giving you a very small amount of thyroid hormone.
> 
> After one of my thyroid cancer treatments, my TSH was at about 145.  I went back on my medication and after 6 weeks, I felt fabulous.  I was shocked that my TSH was at 8.0.  I felt great at that number.



I didn't get to speak to anyone, but I did pick up the synthroid.  The bottle says .1, the pills have a 100 on them and are yellow.  I have been taking them for 3 days now.   I don't feel much different, maybe not quite so tired, but still cold.  I have been really good about making sure I take it at the same time and without food.

Thanks for your input.


----------



## Fan2CSkr

I love this thread! Lots of food for thought. Each of us being able to make informed decisions based on whats right for us as an individual.



> rie'smom Is everyone here on Synthroid? I take Armour 3grains. Synthroid didn't work for me at all. It make my blood levels read ok but I felt like-well you know. Just letting anyone w/Synthroid problems know there's an alternative. Many doctors don't like it because they feel the doses aren't constant but they have to go through stringent testing too. In fact, this was the drug used to treat Hypothyroidism for about 100 years until Synthroid was formulated. It's been a miracle in my life and in my husbands.



I am on Synthroid at the moment but its just been over a month now. For the past 3 years I have been on Anti-Thyroid medications. How long have you been taking Armour? Does your dose remain a constant or does it fluctuate? So your lab values were all in range when taking Synthroid but you just didn't feel well? Still felt hypo, or?

 I am amazed that in general The AACE (American Association of Clinical Endocrinologists) and The ATA (American Thyroid Association) as well as MANY, even MOST Thyroid specialists in the US feel that Armour use shows no advantages over synthetic T4. They further feel that Armour is impure and contains hormones and proteins that never exist in the body outside of the thyroid gland. It seems to me that there is a major anti Armour stance in our country.

 However I have to question why is it that I have read about and spoken with so many people (mostly women) that take Armour and have NEVER felt better? Please dont construe this as my advocating or pushing Armour since I have no basis personally just like I said what I have learned. Question authority? You betcha! Things in the medical field change constantly whats good for us one day isn't the next, drugs are approved by the FDA one day and pulled the next. Bottom line for me is why do all these people taking Armour feel better if the "industry" says they shouldn't? I am positive it wont work for everyone but neither does any other drug.

It's time for research and time for Doctors to realize patients aren't going to sit back and be dictated to on health care issues that optimally we should have a say in. So anyone interested in exploring all your options can have a look here to see what Doctors in the US will dose Armour. 
http://www.armourthyroid.com/locate.html

It is my belief that Armour is absolutely a more difficult drug to dose and learn about, it makes a doctors job more entailed. Too bad! I'm not saying we should all jump ship and insist on being given Armour. For me though if the day comes that after *considerable* effort to regulate and feel "good" (normal!) while taking synthetic T4 fails, I want options! So long as there are options I will continue to explore each and every one.


----------



## Christine

lyeag said:


> I didn't get to speak to anyone, but I did pick up the synthroid.  The bottle says .1, the pills have a 100 on them and are yellow.  I have been taking them for 3 days now.   I don't feel much different, maybe not quite so tired, but still cold.  I have been really good about making sure I take it at the same time and without food.
> 
> Thanks for your input.



The half-life on Synthroid is 7 days.  An endo put it to me this way:  the Synthroid pill you take today (say, Monday) won't be felt until next Monday--roughly anyway.  It takes awhile to build in the system.

Be careful with it though--.1 is a hefty dose for someone who has a functioning gland.  You might find yourself on the hyper end in the next week or two.


----------



## Fan2CSkr

lyeag said:


> I didn't get to speak to anyone, but I did pick up the synthroid.  The bottle says .1, the pills have a 100 on them and are yellow.  I have been taking them for 3 days now.   I don't feel much different, maybe not quite so tired, but still cold.  I have been really good about making sure I take it at the same time and without food.
> 
> Thanks for your input.



I am surprised your Doctor prescribed this dose. It is high for a patient that still has their thyroid in conjunction with a TSH level that has been on a decline. Thyroid replacement hormone in synthetic T4 form is not fast acting. In other words what you take today will not have an effect on your symptoms or blood levels immediately. Start with a low dose and titrate up slowly. I would question this dose based on your history.


----------



## teacups

Hi... I'm the whiner from a few days ago.   
I do take Armour, but have in the past taken synthroid. I have even taken them both at the same time.  I tried Cytomel, but it causes unbearable migraines each and every time I try it (even though doc says that simply is not possible. Whatever.)   So, my labs are all normal, always are. Sometimes I can get them to the extreme upper end of normal, and a tad above and sometimes I can get real low in the normal range. I swear, no matter what the level or the medication... I cant shake these symptoms.  I've been working at this for something like 4 - 5 years... I cant even remember anymore.   Seems so odd. I totally think that I had something weird happen when my brother died, besides the obvious.  I think something chemically changed, and the doc's cant or dont look for whatever it may be.  I have researched myself silly... always hitting a brick wall in the end.
I have to say... I dont like Armour any more than I like Synthroid.  I just want one of them to work. I am not really crasy about taking pills made from a pig... but when the Synthroid made me cry too much, I switched. Ive done this repeated times over the 21 years Ive been post RAI.  I never had thriod storm, thank God, but I was so hyper I could have literally commited a serious crime against another without a thought.  NOT A NICE personality trait... and when you add some offspring to that picture, oh it's ugly.  
One note:  I REFUSE to trust an endo ever again.


----------



## LovableGluttons

.


----------



## kathleena

teacups said:


> Try gaining 50 pounds in one-two months, loosing all energy to the point of your kids practically existing without you, falling into an ugly deep depression that really hangs in there thru thick and thin, as if THIN is even a word you'd ever mumble again! your skin flaky in ugly places, forgetting everything and knowing your not insane but fearing you are starting to become very stupid, rememebering the person you used to be and actually missing yourself! OH and the best part is the fact that your labs come back "within normal range".    I'm not doggin on HYPER people, I was one of them once until the doctor told me to swallow poison and I did it...  I would go back to hyper/graves in A FLASH!    Hypo robs you of the personal resourses you need to help yourself.  It's degrading and humiliating and ugly. And the doctors have never ever, ever been any help to me with this.   When I was hyper I could freak myself out with the racing heart badly... but I would rather have that today, believe me. Well wait... I'd rather have NEITHER!  THEY BOTH SUCK!!!



teacups, I understand your thoughts here, but i've been in both places myself, and I was much, much, much sicker with hyper than I ever was with hypo.  I couldn't move 30 feet without being so exhausted I had to lie down.  I was also having a resting heart rate of 100 while I was on propranol that rose to 150 within a minute of moving around.  I laid on the sofa many nights with my heartrate spiking to 150 for no reason at all and my blood pressure going from 120/80 to 220/180 for no reason.

And I also had extremely dry, flaky skin, my eyebrows fell out as well as chunks of my hair, my legs swelled, my eyes swelled to the point where one now sticks out more than the other, I couldn't concentrate in meetings, forgot conversations 5 minutes after they happened, had horrible diarrhea, coudn't walk up stairs because my muscles were so weak.

Also, I couldn't sleep more than 4 hours a night, usually 30 minutes at a time, my heart pounding so loud the entire time that it kept we awake.

On top of all that, I was irritable and moody.

Talk about degrading, and losing everything you have for personal resources, I couldn't:  go to the grocery store, drive myself to the lab for bloodwork, go to work, clean the house, cook, go to my mailbox 200 yards down the street - just to name a few things.

I'm not trying to start a debate here on which is worse, but we can't ever compare the two or think that everyone's hyper and hypo are the same.  We all have different bodies and different reactions to them.


----------



## kathleena

lyeag said:


> I didn't get to speak to anyone, but I did pick up the synthroid.  The bottle says .1, the pills have a 100 on them and are yellow.  I have been taking them for 3 days now.   I don't feel much different, maybe not quite so tired, but still cold.  I have been really good about making sure I take it at the same time and without food.
> 
> Thanks for your input.



I hope you are doing well, glad you are being followed so closely.

A couple of comments:

It takes 6-8 weeks for T4 to work it's wonders in your body and start stabilizing the thyroid/pituitary relationship.

Symptoms lag behind the numbers.  Whatever you are feeling today, is likely indicative of where your number was a couple of weeks ago.  For example, when I was hyper, I took the meds for two weeks, but got steadily worse, and then turned the corner and started getting better.


----------



## kathleena

Part of the debate on Armour, according to my endo, is the T3.  Just because you have a higher TSH and lower T4, doesn't mean your T3 is out of whack also.  The mechanism that converts T4 to T3 may not be an issue, so giving you something that is both T4 and T3 makes it harder for them to control the T3.  And, the levels of T4 and T3 are inconsistent in the Armour product.

And it is true that Synthroid had dosage issues about 5 years ago, but that is resolved.

And some people have adverse reactions to the fillers in Synthroid, Levoxyl and Levothyroxine.  My doc moved me from Synthroid to Levoxyl years ago, the first time I was hypo, because I just didn't do well on Sunthroid.  levoxyl was fine.  I'm now on the levothyroxine and am doing great (after having been hyper inbetween).

And one more thing - my personal opinion that many of the issues many folks have with hypo and regulation with T4 after taking the RAI treatment for hyperT are because of the RAI itself.  I chose the antithyroid drug route, and plan to live with a naturally failing thyroid for the rest of my life.  I will likely move from hypo to hyper more times before it burns itself out.


----------



## Virgo10

I had my gallbladder removed in December and since then have been so tired. I'm a nearly 7 year post thyroidectomy and have been on the same dose of Levoxyl for about 5 years now, 112mcg. 

I had an appointment with my regular doctor a couple of days ago and had the usual thyroid bloods done. Come to find out my fatigue isn't because of the gallbladder surgery, it's my thyroid having its first major hiccup in years. The doctor increased my dosage to 125 and I'm really hoping I start feeling better soon. Between the fatigue and just total lack of ambition, I hate this. Oh, and lets not forget about feeling cold all the time.


----------



## lyeag

Virgo10 said:


> I had my gallbladder removed in December and since then have been so tired. I'm a nearly 7 year post thyroidectomy and have been on the same dose of Levoxyl for about 5 years now, 112mcg.
> 
> I had an appointment with my regular doctor a couple of days ago and had the usual thyroid bloods done. Come to find out my fatigue isn't because of the gallbladder surgery, it's my thyroid having its first major hiccup in years. The doctor increased my dosage to 125 and I'm really hoping I start feeling better soon. Between the fatigue and just total lack of ambition, I hate this. Oh, and lets not forget about feeling cold all the time.



Oh I hear you on the feeling cold.  It seems to bother me more at night than at any other time.  I even get the shakes at times!   I hope they get you on the right track again soon!


----------



## Christine

lyeag said:


> Oh I hear you on the feeling cold.  It seems to bother me more at night than at any other time.  I even get the shakes at times!   I hope they get you on the right track again soon!




My thyroid levels are fine and I *still* get so cold in my house.  I, too, can get the shakes.  I find what really helps with that is a scalding, hot bath!   FWIW, my friend (who has no thyroid issues) gets REALLY cold also and just can't get warm.  Sometimes I think it just might be a "woman" thing too.


----------



## Fan2CSkr

Christine said:


> My thyroid levels are fine and I *still* get so cold in my house.  I, too, can get the shakes.  I find what really helps with that is a scalding, hot bath!   FWIW, my friend (who has no thyroid issues) gets REALLY cold also and just can't get warm.  Sometimes I think it just might be a "woman" thing too.



Me too! Lately I feel like no matter what I do I cant get warm. Before my TT I never even wore a coat! Now...


----------



## VanessasMom

Hello fellow thyroid survivors! I am a thyroid cancer survivor of 10 1/2 years. I was diagnosed at 24 years old and had a complete thyroidectomy including removal of 2 parathyroid nodes and transplantation of the other 2. I also had tissue scraped out of my chest and lymph nodes removed. I am on levoxyl .112 right now. I have been having a lot of problems lately.

Starting in July, I have intermittently had these episodes of a feeling something bad was about to happen, then major heart palpitations and then almost passing out. This lasts from 30 seconds to 5 minutes. I finally went to the hospital in December a week before Christmas. They ran all the tests on my thyroid, other blood tests, and an EKG. Everything came back normal. They said my thyroid levels were on the high end of normal.

I called my endo and he took me off my meds completely for 4 days. Then lowered me from .125 to .100. After 4 weeks, I was retested and my levels were too low. So, 3.5 weeks ago he raised my meds to .112. I am going for blood work this week again. 

I also went to see my cardiologist last month when I started getting the episodes again. He seemed puzzled by it all. He took an echo and EKG. Then, he set me up with a 24hr heart rate monitor for 30 days. It hasn't happened again since them (figures!). Just to be safe, I also have an appt with my neurologist after sorting things out with the cardio. Am I crazy? Is all this because of my meds? I figure it never hurts to be safe. Anyone have similar problems like this?  

It's really freaking me out because I have a 2 year old that I stay at home with and no family close by. So, basically if something happens to me during the day no one will know until my dh gets home at 6:00 from work. I have been practicing dialing 911 with my dd, but I'm not sure she totally understands. We will keep at it until she does. I'm worried more about her if something happens to me. (sorry this is soooooo long!)


----------



## Christine

Wow, sorry to hear that you are having such a rough time with this.  

Do you know what your TSH levels were when you were having the problems.  Many people, including myself, are very sensitive to the suppressive levels of thyroid hormone that thyroid cancer patients must endure.  I have had my share of heart issues but predominantly I have a rapid pulse most of the time.  I've done the cardiologist stuff too and everything is normal.

I think it is very telling that all of this stuff has stopped since you have adjusted your meds.  So hopefully, this will be it.  If not, you KNOW your heart is okay anyway (even if it flip-flops and races).  You may, eventually, need to go on a beta-blocker medication (like Inderal) to keep your heart rate at a slower, steady rate.  Many thyroid cancer patients on suppressive therapy end up using this stuff.


----------



## Fan2CSkr

VanessasMom said:


> Hello fellow thyroid survivors! I am a thyroid cancer survivor of 10 1/2 years. I was diagnosed at 24 years old and had a complete thyroidectomy including removal of 2 parathyroid nodes and transplantation of the other 2. I also had tissue scraped out of my chest and lymph nodes removed. I am on levoxyl .112 right now. I have been having a lot of problems lately.
> 
> Starting in July, I have intermittently had these episodes of a feeling something bad was about to happen, then major heart palpitations and then almost passing out. This lasts from 30 seconds to 5 minutes. I finally went to the hospital in December a week before Christmas. They ran all the tests on my thyroid, other blood tests, and an EKG. Everything came back normal. They said my thyroid levels were on the high end of normal.
> 
> I called my endo and he took me off my meds completely for 4 days. Then lowered me from .125 to .100. After 4 weeks, I was retested and my levels were too low. So, 3.5 weeks ago he raised my meds to .112. I am going for blood work this week again.
> 
> I also went to see my cardiologist last month when I started getting the episodes again. He seemed puzzled by it all. He took an echo and EKG. Then, he set me up with a 24hr heart rate monitor for 30 days. It hasn't happened again since them (figures!). Just to be safe, I also have an appt with my neurologist after sorting things out with the cardio. Am I crazy? Is all this because of my meds? I figure it never hurts to be safe. Anyone have similar problems like this?
> 
> It's really freaking me out because I have a 2 year old that I stay at home with and no family close by. So, basically if something happens to me during the day no one will know until my dh gets home at 6:00 from work. I have been practicing dialing 911 with my dd, but I'm not sure she totally understands. We will keep at it until she does. I'm worried more about her if something happens to me. (sorry this is soooooo long!)



Hello and welcome!  Thyroid issues sure have their ups and downs! I hope you can get to the bottom of yours. 

*"I have intermittently had these episodes of a feeling something bad was about to happen, then major heart palpitations and then almost passing out."*
This sounds like a classic panic/anxiety attack. When an imbalance occurs with our thyroid hormone levels every metabolic process in our body is affected. The upside of this for you is that your heart has been cleared as being the culprit.

Weight gain, pregnancy, estrogen therapy and starting a new medicine, (affecting absorption) as well as an illness can all be a reason for adjustment to your thyroid hormone replacement dose. Sometimes, there can be changes in dose requirements for no apparent reason.

I feel that the more anxious you are over this the more intensified things become. I would definitely discuss the possibility that you experienced an anxiety attack and question methods that can help you relax.

More than likely once you again attain your correct balance these symptoms will subside. Let us know how you make out and I'll be thinking about you!


----------



## bnhasak

Vanessasmom, you sound exactly like me right now.

I was/am exhausted.  Had MASSIVE hair loss.  Resistant to weight loss. All typical hypo symptoms.  Was finally after much testing and finding a goiter, they put me on .137 mcg of synthroid.  I started to feel better, my hair stopped falling out after about 1-2 months.  It was great....until the palpitations started.

Mind you I have a huge history of panic attacks/anxiety, but this was non-stop.  I finally called the endo and they took me off meds and wanted my blood work.   Apparently I am still very hypo.  Now after being off the meds for almost a month I still am having palpitations and feeling like my heart is just not workign right.  shaking, or fluttering in my chest.

I went to the cardio two days ago and am having all the same testing.  The thing is, I THINK it is more anxiety/stress than anything.  I think it is 100% smart to have it investigated by specialists, but at some point we have to learn to deal with our anxiety and realize we are going to be okay, it is just anxiety.

I am having a really hard time doing that.  I have a 3 year old and a 20 month old and I feel much like you do.  DH is going to find me laying there with the 3 year old crying and the baby mauled by our dog .  (or some other gruesome improbably scenario). 

I think being a mom is hard and stressful.  Especially these early baby/toddler years.  Not having any family to help is VERY stressful.  Add to that some legitamite but treatable health issues and you have the makings of a VERY stressful situation.   I am just coming to terms with that myself.  Throw in our normal hormone fluctations, bills, lonliness, crying/screaming kids and that would make anyones heart skip a beat or two.

I am writting this to help myself as much as you.  LOL!  I honestly have been so preoccupied with my "heart" and health lately that I am not a good mother or wife.  I also feel horrible and sluggish.  I know I NEED the synthroid and that hopefully my holter monitor and echocardiagram are just going to be proof to my delicate psyche that I am MOSTLY healthy with a treatable nondeadly thyroid disorder.

I am hoping the same for you.

If you ever need to talk, just PM me.  Maybe we can be of some support to one another!


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## ashjohnson80

I don't think I've ever posted on here before, but I just got some results and I'm very upset.

I was diagnosed with Hashimoto's in 2001.  I also had a goiter and had to have the nuclear medicine tests done on it.  I was put on synthroid and I kept having my levels tested once a year and taking my medicine until 2005.  I let my prescription run out and gained a lot of weight.  I got really terrified of going back to the doctor for some reason.  

The past two years I have felt horrible and especially the past couple of months; my hair has been falling out, my skin has had dry patchy areas, I've been very very cold especially my hands and feet, and I've been getting extreme headaches.  

I had severe anxiety about going to the doctor.  Anxiety and depression went along with my thyroid disease to begin with, but I also stopped taking my antidepressants.  

Last Friday I got a really bad migraine, and it lasted all weekend, Sunday night it was the worst pain I had ever been in.  I was in tears it was hurting so bad.  Also my vision never went back to normal.  By Tuesday I finally went to the doctor, I would have done anything to stop the pain.  

They took some blood to check my tsh and also I got a shot for the pain.  As I was leaving the parking lot (I wasn't driving) I passed out and had a seizure in the car.  I was rushed back inside the clinic and passed out again on the bed.  They ordered me a CT scan, I went to the hosptial and had the CT scan, it was normal.  Was told to just take the lortab that was prescribed to me until my lab work came back and they would know how much thyroid medicine to give me.  

About 30 mintues ago I got the results of my thyroid test.  They said the results were in the normal range.  I have no idea how this is possible.  I have every sypthom in the world, I have NO energy, these headaches are about to kill me. I have gained so much weight and can't lose any no matter how hard I try, how much I diet or how much I excercise, and my hair is falling out by the handfuls every time I shower.  

Can thyroid disease just go away?  I'm so confused.  I thought it would come back abnormal, they would put me back on synthroid and I would be better again.


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## Christine

No, Hashimoto's Disease does not just go away.  It is an autoimmune disorder.  There are times when your TSH can registers as HYPER and days that it will show you to be HYPO and other times you will be normal.  But you are never really normal.

Obviously, you have a great fear of going to the doctor.  I am really urging you to make an appointment with an endocrinologist--and one that specializes in thyroid disorders (some are more geared toward diabetes).  A general practictioner and/or and emergency room doctor are not equipped to handle Hashimoto's.

I don't mean to scare you but I know someone who had Hashimoto's and she got all screwed up with her medical stuff (she was with Kaiser).  She got totally overlooked by the system and she ended up dying as a result of long-term neglect of her thyroid disease.  As you get older, it will cause more hardships on your body and more problems.  I think you are starting to see this now.

Please call and get an appointment as soon as your can.


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## bnhasak

I agree....see an endocrinologist.

I have a WONDERFUL general practitioner and even he missed my goiter and hypo issues.  There are very specific tests that can tell you exactly what is going on.

It is not something an ER can treat or diagnose out of hand.  They are great for an acute attack of something, but not a chronic disease (which Hashimoto's  is).

Good luck to you, and try to be brave.  You need to more afraid of NOT going and getting treated than of the doc visit.  I know, easier said than done.  (I have anxiety/panic disorder as well)


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## ashjohnson80

I'm going to call and get an appointment with the endrocrinologist that I used to see in the morning.  I haven't been in so long I don't even know if they will still have me on file.  How long do they keep patients records does anyone know?


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## Fan2CSkr

Do you happen to have the blood results? If not requesting them would be helpful to see what they tested exactly as well as what lab values they are following. Your symptoms are classic hypo.

A Doctor must keep a patients medical records for 7 years. That could vary state to state but that's the norm. Also, depending on the physicians malpractice carrier, requirements can vary.

Please take the advice from the others and make that appointment. You desperately need to be back on thyroid hormone replacement. It is not uncommon to have anxiety when our levels are whacked out. Rationale thinking goes out the window often when in that state. Let us know when your appointment is and keep us updated please. I'll be thinking about you.


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## claudia

Christine said:


> I participate on a thyroid cancer survivors list and this issue comes up often.  One of the moderator/doctors on the list is EXTREMELY vocal about using Armour (he is against it) and feels that any "self-respecting" endocrinologist would not use it.  I wish I could find one of his "rants" about it, but I can't.  It seems to me that some of his concerns are valid, but I just can't remember them.  As it is, I've worked with 3 different endos and NONE of them would touch the stuff.




I have been on Armour for over 2 years now, after going through 2 allergic episodes with both Synthroid and Unithroid (due to the dyes and fillers). All I can say is Thank God for Armour. I actually feel like a normal person again. I love that it is all natural and I am grateful that my endo is a believer. Personally I think it has to do with kickbacks....but that's just my opinion. Christine, I would be grateful if you could give me more info on the moderator/doctor if you can find it. 
BTW, I am a follicular cancer survivor.


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## Mackey Mouse

Hugs to everyone here... 

I agree with Christine, Ash please do get yourself to an accredited endocrinologist, maybe one affiliated with a larger hospital, although that can be a nightmare as well as you are more of a number, but they do see more cases and have more experience than the smaller hospitals...

And to Claudia, congrats on the 3 years, two more for you... and you can relax a bit... hugs.


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## claudia

Mackey Mouse said:


> And to Claudia, congrats on the 3 years, two more for you... and you can relax a bit... hugs.




My oncologist said she is going to let me skip this year for treatment (thyrogen shots and scans) since my last 3 were clean. She said she will only do the blood test for the Serum Thyroglobulin and antibodies. If that comes back "normal", I will get to skip this year. While I am excited about the thought of not having to do that lousy low iodine diet, I must admit I am a little nervous about skipping. I think what scares me most about this cancer is that they say it shows up sometimes after 15 years or more. I'm sorry but I don't know your history...was it cancer for you as well?


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## Christine

claudia said:


> I have been on Armour for over 2 years now, after going through 2 allergic episodes with both Synthroid and Unithroid (due to the dyes and fillers). All I can say is Thank God for Armour. I actually feel like a normal person again. I love that it is all natural and I am grateful that my endo is a believer. Personally I think it has to do with kickbacks....but that's just my opinion. Christine, I would be grateful if you could give me more info on the moderator/doctor if you can find it.
> BTW, I am a follicular cancer survivor.



Claudia, I PM'd you.


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## SillyMe

Is weight gain/loss always a symptom of thyroid disorders?  I've been having problems for a year now.  Thought is was reflux.  Then was diagnosed with biliary dyskinesia, but the docs are on the fence about having my gallbladder removed.  This all started with a lump in the throat feeling last year, then pain by my shoulderblade.  

Anyway, I read somewhere on another thread that leg aches is a symptom of thyroid disease.  I've been having terrible leg aches for quite awhile.  They feel so fatigued, like I'm getting the flu.  

I haven't lost weight, nor gained.  I was always underweight before having my kids, but am comfortable at the weight I'm at right now.  When I do lose weight, I have a really hard time gaining it back.  Always have had that problem.  Plus I'm always cold.  I've been that way my whole life, too.

I'm so tired of feeling like crap all the time.  I just wish they'd figure out what the problem is.  When I first started having problems last year, my doc ran routine blood tests.  Would he have tested for this?


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## lisajl

Hey! I just found you people...my people!  LOL!!  
I am hyperthryoid.  Was diagnosed in 2002, been on meds ever since..can't seem to lose weight.  But, at least my numbers are within normal range.
My sister can't seem to get hers right.
She is on other meds for HBP and High cholesterol, could that be affecting it?

Lisa


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## Fan2CSkr

lisajl said:


> Hey! I just found you people...my people!  LOL!!
> I am hyperthryoid.  Was diagnosed in 2002, been on meds ever since..can't seem to lose weight.  But, at least my numbers are within normal range.
> My sister can't seem to get hers right.
> She is on other meds for HBP and High cholesterol, could that be affecting it?
> 
> Lisa



I was hyperthyroid for years too until recently when I had a TT. At first I lost weight but soon after my appetite was so HUGE that I gained a bit and then once I was regulated with tapazole I gained then gained some more. YUCK! Since the TT a few pounds have come off but I would love to see more! Do you have graves? Your sister is hyper too? Sometimes some of us just cant regulate on antithyroid meds. Me included. Is she on Tapazole or PTU? Has she tried both? Glad you found us!


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## lisajl

Fan2CSkr said:


> I was hyperthyroid for years too until recently when I had a TT. At first I lost weight but soon after my appetite was so HUGE that I gained a bit and then once I was regulated with tapazole I gained then gained some more. YUCK! Since the TT a few pounds have come off but I would love to see more! Do you have graves? Your sister is hyper too? Sometimes some of us just cant regulate on antithyroid meds. Me included. Is she on Tapazole or PTU? Has she tried both? Glad you found us!



Oh Geez..it's been a long week...I am HYPOthyroid. Not enough...
Sorry...have been working more hours, son being picked on in school, youngest son, 9 just starting Lacrosse.
Ok...need more thyroid meds! LOL!!


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## Fan2CSkr

lisajl said:


> Oh Geez..it's been a long week...I am HYPOthyroid. Not enough...
> Sorry...have been working more hours, son being picked on in school, youngest son, 9 just starting Lacrosse.
> Ok...need more thyroid meds! LOL!!



Ahh OK! Scratch my post minus the  Tell the bully to lay off your son too! I hate that.


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## Christine

SillyMe said:


> Is weight gain/loss always a symptom of thyroid disorders?  I've been having problems for a year now.  Thought is was reflux.  Then was diagnosed with biliary dyskinesia, but the docs are on the fence about having my gallbladder removed.  This all started with a lump in the throat feeling last year, then pain by my shoulderblade.
> 
> Anyway, I read somewhere on another thread that leg aches is a symptom of thyroid disease.  I've been having terrible leg aches for quite awhile.  They feel so fatigued, like I'm getting the flu.
> 
> I haven't lost weight, nor gained.  I was always underweight before having my kids, but am comfortable at the weight I'm at right now.  When I do lose weight, I have a really hard time gaining it back.  Always have had that problem.  Plus I'm always cold.  I've been that way my whole life, too.
> 
> I'm so tired of feeling like crap all the time.  I just wish they'd figure out what the problem is.  When I first started having problems last year, my doc ran routine blood tests.  Would he have tested for this?




Weight gain is not necessarily always there.  Usually that stems from long-term hypothyroidism.

You should request from your doctor a full "thyroid panel"--this will show all your levels and a thyroid antibody test.

Also, just for good measure you might want to check for iron deficiency (ask for a ferritin test).


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## Whosemom

OK, I'll apologize now, this is going to be long.  I just want to share with people who know what its like, what has been happening with my DD8.

My sweetie has always been the most cheerful, creative, bubbly thing in the world. But slowly, she started fading right before my eyes. She stopped doing ANYTHING and packing on weight. But 1st came the "stopped doing anything". You know, it was so nebulous, I wasn't sure if I was imagining things or it was just "growing up" or what. But finally other people started asking what was wrong with her. Like her dance teacher who has had her since she was 2. This was last spring - the weight gained happened over the summer. Anyway, her birthday was in Oct. and before we went, I sent the dr a two page letter in which I outlined the fact and reasons that I was afraid she was suffering from depression. She's on alot of asthma meds too, and had started a new one in the spring,so I was angling for that to be a side effect and we could just take her off it and try something else. 

So, the DH and I both went so I could go out and talk privately to the dr. He had the NERVE to say, "well, its clearly because she is overweight. Someone is teasing her about being heavy. And it is bumming her out. Not enough to treat or anything." I told him NO! She stopped doing anything first, then gained. He said "no, no, I'm sure she'll start crying some day and spill it all out. Find a time the Y isn't busy, so she won't be embarrassed by being in her suit and swim laps with her." I told him that was SOOOO not the issue. My goodness, she runs around in her leotard. Plus, she stopped doing anything and then gained. I'm talking ANYTHING. didn't play out side, didn't color, stopped her favorite creative thing (building tables from scrap wood). MIL lives next door. the other kids would say lets go to grandma's and she'd never go. on and on and on.

Anyhoo - When I wouldn't cave, he said, "I suppose we can do some tests and check her thyroid, but it will just rule it out." 

THis visit was 5 days after MIL was diagnosed with a cancerous brain tumor, and was getting yanked around scheduling surgery. It was a week from hell. 

So, we go get her blood test. I haven't mentioned that she is reiculously afraid of needles. Two of us held her down. (If you could see me, I'm bawlin just thinking about it). Two days later, the dr calls. He apologized profusely, and thanked me for sticking to my guns. Her TSH was 103. And he wanted an MRI to rule out tumors. Catch that? We're afraid MIL is going to die of a tumor and we are sent to check our baby for one. We just told the girlie they wanted to look in her head. didn't use the T-word. 

She did not have a tumor, thank God. But that was oct 18 and we couldn't get into the endo at the children's hospital until the end of Jan!! Its crazy. 
Our regular dr started her on 25mcg of the generic synthroid lexo...something. And after 4 days, I started getting my baby back!

all is going well now. so far. but this thread is scaring me to death!

And, now she is seriously overweight and touchy and I don't know how to walk that tughtrope of helping her and not hurting her feelings.


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## Christine

Whosemom--I'm so sorry to hear about what your DD has been through.  Poor thing.

It's good to know that your working toward getting that TSH down. Once you get it stabilized that weight should drop right off.  Adults have a harder time, but I think it goes very well in children.

You can get into a "tough" time getting the TSH stable, especially if her thyroid gland is not in total failure.  It could still be producing *some* hormone (though I doubt much with that high of a TSH).  She could have small bouts of hyperthyroidism if her thyroid produces something here and there.  Hopefully nothing major, but moodiness and ravenous appetite would be something to look out for.

Please keep us posted on how she is doing.


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## Whosemom

Thanks Christine!
After a month on meds, her TSH dropped to 17, and after another 2 months it was down to ??? Hmmm. You know, they didn't say. When we went finally to the specialist, and she saw the 17, she said to double her dose. Then called after 2 days to say the lab work the day of our visit was better and to keep her at 25. (We had some nice behavior the week after that!)

Here's the selfcentered side of it. I feel so guilty! I spent months really getting on her about being a pain to get up in te mornings (like, last half of last school year + the beginning of this year), then come to read  - not here but other places - about people losing their jobs over not being able to muster the energy to get up. That and the fact that when I started looking at hypothyroid symptoms I just go "yep, yep, yep." If I had mentioned all those little things, would the dr have caught it? Could she have suffered less? We are a really frugal aldi-shoppin' kind of family, but we've been buying her $9 a bar shea butter soap for 3 winters because her skin gets so dry. So, how long has this been going on? Do thyroids slowly stop working? The weight thing definitely took off this past summer. The kids were watching last springs dance recital tape, and I thought it was a couple years old because she was so much smaller.

I just keep trying to tell myself I'm not a dr and there's no way I could have known. 

Then there's the "NO FAIR!!" part.  Like anything is supposed to be fair. LOL at me. Searching for info on this whole thing, its supposed to happen to 30+ yo. Or babies born with a problem. Not 8yo's! This poor kid has cough-varient asthma, which took a year to diagnose. Its not a "turn blue and race to the hospital" kind of thing, but when she's having a bad stretch, it takes weeks to get under control. And she's at the stage where it embarrasses her more than anything. She has a row of medicine to take every day that rivals an old person. And THAT ticks her off. On top of that, if we pass something around, she always gets the worst of it. For instance, a tummy bug just made its rounds. Big sis had 2 bouts of sitting on the pot one evening. Lil Bro threw up once. For her turn, sje threw up every 20 minutes for like 2 hours, and maybe hourly after that for another 4. sigh.


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## Christine

Please don't beat yourself up over this.

It is hard enough for an adult to get diagnosed.  It is very rare to see thyroid failure in a child so it wouldn't surprise me that even your doctor would have passed it off for awhile.  Maybe 30 years ago, he would not have.  But with all the overweight children these days, it is hard for them not to just look at that aspect of it.

Did you doctor determine what the cause is?  I think most cases of thyroid failure are due to Hashimoto's Thyroiditis, which is an autoimmune disorder.  It might be important to know if this was the cause because having one autoimmune disorder means you can be at risk for others.  Also, if  having hypothyroidism can make everything else you get worse.  Including her asthma and any colds/viruses/flu you might pick up.  So this could explain why she suffers so much worse than your other children.

I understand how you feel, believe me!  I've got one child who has NOTHING wrong with her, while my youngest as severe asthma, peanut allergy, egg allergy, environmental allergies, etc.  Colds hit him harder than anyone else and he's always got something going on.

I apologize in advance if I don't get back to this thread.  In 45 minutes I am leaving to catch a plane to WDW!!!


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## angel*lady

I just found this thread and don't have time to read much right now.  I wanted to subscribe so I don't lose it.  I'll be back in a few days to catch up on the reading.  Oh, and I am hypothyroid!


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## claudia

Whosemom, please don't beat yourself up about this. I think you are a wonderful mom when you didn't back down when the doctor was poo-pooing your concerns. There is NO way you could have known what was happening to her.
The thyroid thing could have been long coming, hence, the dry skin. How would you know??? Who would think of this in an 8 year old child. But, the fact is you DID something about it and now she is receiving treatment for it. If she is to feel well on her meds at this point, the docs should be looking to get her TSH to 1. Also, they need to find the cause of this...as Christine mention, the Hashi's may very well be the problem. When you find out the cause, you will all feel better about this and will get a treatment plan into place and even though it may take a bit of time to get her meds accurate for her, she WILL feel better. Also, when she is no longer hypo more than likely the weight will just fall off of her and she will arrive at her previous weight....for 2 reasons, her metablolisim will be functioning at a "normal" level and she will feel well and want to be active. 
About the "fair" part of illness....everyone is different, we all experience illness differently. That's just who she is and she shouldn't compare herself to any siblings. I have 3 children and each one will get through the cold or flu very differently. One has ADD, one suffers with depression and anxiety and one hasvery severe tree allergies..Just let her know that her body deals with illness it's own way and that it is ok. 
Please keep us updated on her. I am a thyroid cancer survivor and have been hypo and hyper. It took several months for the docs to get my meds correct and it is a constant process to keep them that way. The best thing now is that the docs are aware of what is going on, so you will not have to fight anymore to help your daughter.


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## Whosemom

thanks claudia (and christine, even if you are having more fun than me )

I know, but you know how mommies are


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## Moosysmom

Found this thread by accident and wanted to subscribe 
Me, I'm hypothyroid.  When I moved to Florida 3 1/2 years ago, the first doctor I saw thought something was wrong with my thyroid, but I was losing weight so I didn't think so, turns out I have had a thyroid problem for many years and was never tested or treated.  I was doing ok until I goofed up my neck and needed prednisone--I'm one of the 1 in a that it goofed up my thyroid.  Finally got the dosage right, but then I switched jobs, and had to find a new doctor--I was talking to a co-worker who had her thyroid removed, and I finally felt better--Most of my symptoms were my thyroid, she told me about a book which I've read "living well with hypothyroidims", and I'm guessing that this has been a problem for a very very long time.  Now, I'm having a test on my gallbladder tomorrow, with a promise to my doctor that if I have any more stomach pain to report to the hospital immediately, and I'm now a type 2 diabetic.  All because I was never tested for my thyroid years ago.  I am finally feeling a bit better, joined a gym and am working out 3 days a week, but this just makes me mad.  I've got my whole family being tested because this can be hereditary.  Oh well, sorry I vented, just nice to know there are other's out there too.  Thanks for listening.


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## LOLA2

I did not read through this whole thead so please bear with me.  About 10 years ago my obgyn would say your thyroid feels really big and tell me to get checked out by my doctor.  Well my doctor said it felt large to her also.
For 5 years they said this at every visit until after my second child was born, they finally said we should get an ultrasound done.  So I got it done and everything came back normal next 4 years same thing, your thyroid feels large.  Once again they want me to get an ultrasound.  So I do and the result are I have many nodules some are getting bigger since last ultrasound but nothing they think is cancer.  Said I should recheck in 5 years again.  I started complaining at this point because I have gained so much weight and throid disorders run in my family.  A little backround on me.  My uncle has graves disease lost tons of weight and eyes buldged was put on medication to fix problem.  My mom had hoshimotos (SP).  They put her on meds also.
Now all my life I have weighed a toothpick.  I was 5'2 and 102 pound before I became pregnant with first child.  Gained 60 pounds lost 30.  Then on to second child gained 60 pounds lost 20. So after both my kids weighed about 170.  In the last year I have been steadily gaining weight and now am up to 194.  This all on a person who never gained an ounce in high school.  I can see over the years gaining a little weight, but come on.  Something has had to happen in my body that my metabolism is not burning right.  I am also iron deficiant they say I gave a low blood count , and thay put me on an iron supplement.  I have horrible night sweats waking up soaked.  I had horrible heavy periods for the last 5 years (never did in high school) so bad that since I am low iron they put me on BC last year to make my periods lighter.
This has worked.  

They have done blood tests to test for thyroid problems and have not found anything.  Are they misdiagnosing me or is there really nothing wrong with me?  I feel like my body has changed so much and I don't know why.


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## Christine

LOLA2 said:


> They have done blood tests to test for thyroid problems and have not found anything.  Are they misdiagnosing me or is there really nothing wrong with me?  I feel like my body has changed so much and I don't know why.



It would be hard to say without knowing exactly what thyroid tests they have done on you.  Usually having a TSH is not enough.  You need to have T3 and T4 checked.  Also with your family history of thyroid autoimmune disorders, you need to have a thyroid antibodies test.  If all that is normal (and not borderline normal), and you have that done a couple of times and it is normal, then you can be pretty sure it isn't your thyroid.

Many of the symptoms you describe happen to people without thyroid issues.

I know I was 5'7" in high school and weighed 100 lbs.  By the time I was in my mid-20s (and no children) I had put on 30 lbs.  I think some of us, when younger, just run a high metabolism and it is natural for it to slow down.  Couple that with having some children and retaining some pounds from that and it doesn't ALWAYS equal a thyroid problem.

Your iron deficiency (I have this too) can give you lots of problems and odd symptoms.

I guess my advice would be to go to an endocrinologist and have them run the proper thyroid tests a few times (to rule out thyroiditis).


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## Whosemom

Hello anti-thyroid buddies. I have to say, I wish it was me instead of my kid. Then I could say, "man, I need to do something different." The kid denies any connection, but has had 3 really bad mornings. From outside the affected body, I say "hmmm, is this a wacky level or a lazy kid?" I'm afraid she learned some bad habits. So, even though I'm not sure, I"m trying some behavior mod stuff. (rewards and punishments based on a.m. behavior)

How's everyone else holding out these days?


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## Christine

Whosemom said:


> How's everyone else holding out these days?



Doing good with a TSH of .70.  Wish I could get my iron levels up though!


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## Whosemom

What's up with your iron? We need energy!!


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## Christine

Whosemom said:


> What's up with your iron? We need energy!!



I wish I knew???


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## Whosemom

Well, go out and lick a rusty post or something.   wouldn't it be nice if it were that easy?


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## Whosemom

We had sweatpea's 4 month check up today. Her TSH was up to 6.43, and her T4 is holding around 1.2. So they raised her dose from 25 to 37.5 micrograms. 

She did gain 2 pounds since a drs appt 3 weeks ago. I was dissappointed by that. I've been working to change her diet and keep her moving, but its not doing any good.

We saw the nurse practitioner instead of the doctor today. Why is it that they can be so much more personable and helpful than doctors? I'm sure their schedules are just as packed.


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## hercamore

Christine,

I have also just been diagnosed as being anemic.  Why, since I'm menopausal.  I am so confused.  I eat well, cerreal is fortified with iron supposedly.  

Diagnosed with Hashimoto's 3 years ago.  

Now I've got to worry about iron tablets interfering with my Syntyroid.

herc.


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## djblu883

You may be a blessing to me! I have been living with hypo for over a decade and going up and down...with my job I've had little luck with getting it in balance( I travel for work) and I actually had a doc tell me once "I think you have cancer" then no one contacted me. After 2 weeks I called and demanded my results be sent to me so I could have them read elsewhere only to find out it was once again... my thyroid!!! I've finally found a doctor who demands I be tested regularly and after todays test they called and said instead of every 2 months he wants me to be tested once a month so we can get it under control!and no more generics!!! I have been so sick and depressed...overweight despite my constant dieting and I work sooooooo very physically hard that I should be skin and bones instead of lard...I told one doctor my eating habits and he actually had the nerve to roll his eyes as if I was lying!! Needless to say I didn't go back to him...thanks for beginning this thread and my prayers are with all of you!!!


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## rpbert1

I have ,had Radio Iodine treatment about 2 years ago, everything has been fine , but over the last couple of days my Thyroid glan on the left hand side has been sore to touch, anyone have this experience. Do not want to run to the doctor for something so minor , anyone give me advice


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## Christine

rpbert1 said:


> I have ,had Radio Iodine treatment about 2 years ago, everything has been fine , but over the last couple of days my Thyroid glan on the left hand side has been sore to touch, anyone have this experience. Do not want to run to the doctor for something so minor , anyone give me advice



Did you have treatment for Grave's disease.  Is that why you had Radioactive Iodine.  Or did you have thyroid cancer?


----------



## rpbert1

No i had Hyper thyroid and could not get it under control , with the different treatments, soRadioactive iodine was a last resort, i now take Thyroxin to supplement my thyroid


----------



## Whosemom

rpbert1, I'm no expert on this thyroid thing, but I think in general, if something is causing you concern its best to see the dr. Especially on this rollercoaster. 

Did anyone else go through this as a kid, or watch their kid go through it? My DD is driving me nuts, and I don't know how much is "being 8" and how much is her body/mind/mood adjusting to the changing levels. I have read that kids behavior can be whacked while they adjust. But, hey. I can't let her just get away with a nasty attitude and say "its the thyroid meds" because by the time she does adjust, she'll have learnd bad habits. right? Do you find it hard to be pleasant in the weeks following a med change?


----------



## Christine

Whosemom said:


> Do you find it hard to be pleasant in the weeks following a med change?



I haven't had a dosage change in many years, so I can hardly remember.  But some people are very sensitive to it and get panicky and more of a feeling of anxiety.  Some people also get irritability.  This probably lasts for about 2-3 weeks until it evens out.


----------



## rie'smom

I'm sure that most of you know this but the cruciferous veggies: broccoli,cauliflower,Brussel sprouts,and cabbage interfere with thyroid function.If you're hypo-like me- avoid these or eat sparingly.


----------



## Whosemom

Well, if I can get my 8 yo to stop eating brussel sprouts, all will be well. TEEhee.  The nurse practitioner just told us soy was awful, too.

So, what about this. Since sweetpea's dosage change, I have to cut her pills in half. Well, I cut a months worth, because getting her own meds in the morning makes her feel at least a little control. And I didn't do a great job, so somedays she will have more and some less. By months end it will average out, but daily will be off. Is that going to be a problem, do you think? Next month, I'm going one at a time because then each two days will avg out. I just wasn't thinking.


----------



## Christine

Whosemom said:


> So, what about this. Since sweetpea's dosage change, I have to cut her pills in half. Well, I cut a months worth, because getting her own meds in the morning makes her feel at least a little control. And I didn't do a great job, so somedays she will have more and some less. By months end it will average out, but daily will be off. Is that going to be a problem, do you think? Next month, I'm going one at a time because then each two days will avg out. I just wasn't thinking.



It will be fine.  Thyroid hormone has a very long half-life so you can get away with stuff like this.  If she were taking one of the short-acting meds (like Cytomel), I would say no.

I have to split one of my pills once a week so I know what you're saying.  It's fine.


----------



## Notatourist

Christine said:


> I participate on a thyroid cancer survivors list and this issue comes up often.  One of the moderator/doctors on the list is EXTREMELY vocal about using Armour (he is against it) and feels that any "self-respecting" endocrinologist would not use it.  I wish I could find one of his "rants" about it, but I can't.  It seems to me that some of his concerns are valid, but I just can't remember them.  As it is, I've worked with 3 different endos and NONE of them would touch the stuff.



I'm quite the opposite, I'm one of the folks allergic to something in the fillers they put in Levoxcyl. I wound up passing out, having heart issues, and all the other fun things that happen with this kind of allergy. In three days of Synthroid, I was sane, able to sleep and haven't passed out in a year and a half.


----------



## Notatourist

djblu883 said:


> You may be a blessing to me! I have been living with hypo for over a decade and going up and down...with my job I've had little luck with getting it in balance( I travel for work) and I actually had a doc tell me once "I think you have cancer" then no one contacted me. After 2 weeks I called and demanded my results be sent to me so I could have them read elsewhere only to find out it was once again... my thyroid!!! I've finally found a doctor who demands I be tested regularly and after todays test they called and said instead of every 2 months he wants me to be tested once a month so we can get it under control!and no more generics!!! I have been so sick and depressed...overweight despite my constant dieting and I work sooooooo very physically hard that I should be skin and bones instead of lard...I told one doctor my eating habits and he actually had the nerve to roll his eyes as if I was lying!! Needless to say I didn't go back to him...thanks for beginning this thread and my prayers are with all of you!!!




Generic Thyroid medication almost killed me. From now on, no matter what doc you go to, as for the following words to be put on your prescripton...Despence as Written. They by law then have to give you the brand name of the drug. When it comes to thyroid meds, you do this. It's your LIFE you're talking about here.


----------



## Notatourist

Thank you Christine....

For this thread. My short form of the long story. Diagnosed with hypo about five years ago. Was on Levoxyl for it for a while, went for a thyroid biopsy when dr prescribed it in 2003. In 04, at my appointment, discovered that the hospital didn't send my results to him.

They were POSITIVE for Papillary Carcinoma.

After that, scheduled thyroidectomy, called attorney and had the bugger out in March of 04. was dropped by doc the next month, went to new endo who kept me on levoxyl. Started passing out, having horrendous anemic episodes, and.....heart issues. Turns out that a national branch was filling my thyroid meds generically, I was allergic to something in the generic. I didn't find that out until dropping old endo for new endo.

My new endo rocks. My levels are high, but regulated. I'm just having issues with the parathyroids...my calicum goes up and down.

If you guys have questions, or need help, holler.

I have been there and offically done that.


----------



## Christine

Notatourist said:


> Thank you Christine....
> 
> For this thread. My short form of the long story. Diagnosed with hypo about five years ago. Was on Levoxyl for it for a while, went for a thyroid biopsy when dr prescribed it in 2003. In 04, at my appointment, discovered that the hospital didn't send my results to him.
> 
> They were POSITIVE for Papillary Carcinoma.
> 
> After that, scheduled thyroidectomy, called attorney and had the bugger out in March of 04. was dropped by doc the next month, went to new endo who kept me on levoxyl. Started passing out, having horrendous anemic episodes, and.....heart issues. Turns out that a national branch was filling my thyroid meds generically, I was allergic to something in the generic. I didn't find that out until dropping old endo for new endo.
> 
> My new endo rocks. My levels are high, but regulated. I'm just having issues with the parathyroids...my calicum goes up and down.
> 
> If you guys have questions, or need help, holler.
> 
> I have been there and offically done that.



Interesting about the meds.  Did you find out what you were allergic to?

I am having a similar problem with ibuprofen tablets and now Feosol (iron) tablets.  First thought I had an ibuprofen allergy but recently had the same response to Feosol.  Both have a coating and I'm trying to narrow down the offending ingredient but not having much luck.


----------



## Notatourist

I'm sorry, I don't know. There's limited evidence to the contrary that this medication is causing this stuff to happen. Most endos refuse to believe it, my former endo said it was me and not the med. Exit old endo. New endo was open minded and well I became!

Who else has the anemia problems?


----------



## Christine

Notatourist said:


> Who else has the anemia problems?



Just me, as far as I know.  Did you find a cause for your anemia?  I've had all the tests:  celiac, endoscopy, colonoscopy, etc.  Have a few ideas but no real firm cause.


----------



## Notatourist

Christine said:


> Just me, as far as I know.  Did you find a cause for your anemia?  I've had all the tests:  celiac, endoscopy, colonoscopy, etc.  Have a few ideas but no real firm cause.



My endo stated...it's the drugs, they leech the iron from your blood.

Ah, the joys of Synthroid....


----------



## hercamore

As I stated in a previous post, I have Hashimoto's and I am anemic according to my last checkup a few weeks ago.

Vitamin B12 deficiency can cause anemia in Hashimotos' patients, so I'm gonna have that test done next month.

In the meantime, I'm chowing down iron.  Joy.

herc


----------



## Notatourist

Always take iron with food. That's my one most important tip of the day.


----------



## Christine

Notatourist said:


> My endo stated...it's the drugs, they leech the iron from your blood.
> 
> Ah, the joys of Synthroid....




That's funny because when I asked this question on the thyroid cancer survivor's list, hardly anyone was having problems with iron deficiency--in fact, out of several hundred people, no one really had an issue at all with this.  I wonder if this is really true?  I know that iron can interfere with absorption of Synthroid, but I've never heard that Synthroid can affect iron stores.


----------



## Christine

hercamore said:


> As I stated in a previous post, I have Hashimoto's and I am anemic according to my last checkup a few weeks ago.
> 
> Vitamin B12 deficiency can cause anemia in Hashimotos' patients, so I'm gonna have that test done next month.
> 
> In the meantime, I'm chowing down iron.  Joy.
> 
> herc



So do you have iron deficiency are B12 deficiency?  You know it's dangerous to take iron if you don't need it.


----------



## Whosemom

I'm sorry to interupt ffrom out of left field. I have read about too much iron being bad as well - so be careful out there!

We have had 3 incidents in 3 days with DD totally flipping out. This is a week after a med change. She hit the ceiling, refusing to follow simple directions, screaming, hitting, throwing things at me. We sent her to her room and she just wailed for an hour, and we heard some throwing stuff around, but not to the point of hurting herself. I'm not sure I can take this, or she can. I mean, she's growing and so increaing doses at check ups will be the norm, I assume. Maybe I'll take matters in my own hands next time and go up half what they say for a week or two and then on up. Not really, I'd ask. Here's to my sanity! Should this settle soon? I know Christine says she hasn't had changes in a while, but did anyone one else have problems with changes? At least so far she hasn't gotten in MUCH trouble at school. sigh


----------



## Notatourist

Before they yanked it,  I was diagnosed with Hashimoto's, so...it might be from that that I am anemic.

Hmmm...time for a little more research.

Chris


----------



## hercamore

HI,

Yes, I know too much iron is bad.  I do have an iron deficiency....   .8 I believe the level was a couple weeks ago.  I really detest taking those iron supplements.

I will be rechecked next month. 

herc.


----------



## Christine

hercamore said:


> HI,
> 
> Yes, I know too much iron is bad.  I do have an iron deficiency....   .8 I believe the level was a couple weeks ago.  I really detest taking those iron supplements.
> 
> I will be rechecked next month.
> 
> herc.




My level was a 5 last check.  I sure hope it goes up.  I'm afraid my doc is going to send me to a hematologist for infusions.  I don't want that.


----------



## hercamore

Christine, i'm sorry your iron level is so low.  I was down to that level two years ago when I had a huge fibroid issue before my hysterectomy.  I was much more tired then than I am now.

It's so frustrating to keep dealing with this low iron issue..


herc.


----------



## Fan2CSkr

Interesting article - Iron, Anemia and Hypothyroidism 
http://www.thyroid-info.com/articles/iron.htm

A large body of thyroid patients have been surprised to discover that being hypothyroid also results in having low Ferritin, or storage iron. Ferritin is an iron-storage protein. So when Ferritin is measured via a blood test, it is basically measuring your storage iron, or the iron you have tucked away for future use. You can have “normal” iron serum levels, yet a low Ferritin.

Iron-deficiency anemia due to silent celiac sprue - Connection autoimmune thyroid disorders
http://thyroid.about.com/cs/latestresearch/a/celiac.htm


----------



## ckirkseyblue

Can anyone give me more insight on what it means to have a goiter on your thyroid. I found out last year that I have one. My doctor has told me that there is nothing to do but watch it. If it gets bigger and more bothersome (hard time swallowing, lots of coughing fits) they will remove it, which in turn means removing part of the thyroid an being on thyroid medicine for the rest of my life. 

Is it worth having it removed do you think. I am hypo right now (I know I was hyper when I look back on it when I had my 2 baby girl). I have trouble with fatigue, I just can't seem to get motivated. I am gaining weight and having sugar cravings. I do not feel like myself at all and it is effecting me emotionally also. I have 3 daughters and after my 3 baby girl I started with the hypo. Its frustrating because you want to get up in the morning work out eat right and lose that weight but your body will not let you. 

Anywho, I would be so grateful to anyone who could give me some advice on dealing with this, because at the moment I am not doing anything but living with it. Should I get the goiter taken out, get a second opinion ( I worry about it being cancerous) my doctor did not do a biobsy on the goiter. 

I am so grateful to have found this thread.

Thank you,

Christina


----------



## claudia

ckirkseyblue said:


> Can anyone give me more insight on what it means to have a goiter on your thyroid. I found out last year that I have one. My doctor has told me that there is nothing to do but watch it. If it gets bigger and more bothersome (hard time swallowing, lots of coughing fits) they will remove it, which in turn means removing part of the thyroid an being on thyroid medicine for the rest of my life.
> 
> Is it worth having it removed do you think. I am hypo right now (I know I was hyper when I look back on it when I had my 2 baby girl). I have trouble with fatigue, I just can't seem to get motivated. I am gaining weight and having sugar cravings. I do not feel like myself at all and it is effecting me emotionally also. I have 3 daughters and after my 3 baby girl I started with the hypo. Its frustrating because you want to get up in the morning work out eat right and lose that weight but your body will not let you.
> 
> Anywho, I would be so grateful to anyone who could give me some advice on dealing with this, because at the moment I am not doing anything but living with it. Should I get the goiter taken out, get a second opinion ( I worry about it being cancerous) my doctor did not do a biobsy on the goiter.
> 
> I am so grateful to have found this thread.
> 
> Thank you,
> 
> Christina



here is a site that you will find a ton of info on...I hope this will be helpful for you. 
www.endocrineweb.com


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## Notatourist

Christina,

Are you on med right now? Have you asked your endo what they think is happening? Goiter is a base term for enlarged gland. Do you have nodules? Have you heard the word "hot" mentioned with them?

Since you're just being told this is happening, the exhaustion, the desire to do anything but sleep, and the hair falling out (that's coming, be aware) is normal for a hypo diagnosis. Having three kids doesn't help the exhaustion level, but, it's something to know, you're having normal symptoms.

More than likely your endo will be monitoring your thyroid to see if it's growing, and if it is, surgery will be indicated. With me, it was about two years and after a biopsy, it was determined it was time to come out. If you do go in for a biopsy, make certain that they contact you in a number of days, even if it's a good result. HAVE THEM CALL YOU!!!

I wasn't called and found out three months later that I was positive. 

Absorb what Claudia sent you (killer site btw) and don't worry. You have plenty of folks here to help.


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## frdeb1999

I am so glad that I found this thread. My husband had a ultrasound and blood tests that indicated he should have a biopsy. We had that done today. I am so tired of waiting to hear if it is or isnt cancer. They seem to love to make you wait. We found out that he had nodules over a month ago. Then had to wait yet once again to get a appt for a biopsy. He has two brothers who have thyroid cancer so we are already at a point where we have accepted that it is probably going to come back that way. We have been going rounds with two different drs on issue's. They are the only 2 in the immediate area. We both felt like the biopsy was a waste of time and pain and that everything should have been removed due to history. They both insisted that he should have it. Everything I read says that there is a huge probability that it will come back inconclusive and that we will have to proceed to the next step anyhow. Why don't drs want to listen? I feel like we are wasting time, but who knows I may be wrong. We have been told repeatedly that this is very curable. But still cancer in any form just scares me. Would love to hear from others who have had same issue's. Am I crazy or should we be looking for another dr who will help us more. From what I've read on this thread they are'nt easy to find. Sorry I have been so long winded. Just very aggrevated with everything and hate being told I have to just sit and wait when I think things should be moving in a different direction.


----------



## claudia

frdeb1999 said:


> I am so glad that I found this thread. My husband had a ultrasound and blood tests that indicated he should have a biopsy. We had that done today. I am so tired of waiting to hear if it is or isnt cancer. They seem to love to make you wait. We found out that he had nodules over a month ago. Then had to wait yet once again to get a appt for a biopsy. He has two brothers who have thyroid cancer so we are already at a point where we have accepted that it is probably going to come back that way. We have been going rounds with two different drs on issue's. They are the only 2 in the immediate area. We both felt like the biopsy was a waste of time and pain and that everything should have been removed due to history. They both insisted that he should have it. Everything I read says that there is a huge probability that it will come back inconclusive and that we will have to proceed to the next step anyhow. Why don't drs want to listen? I feel like we are wasting time, but who knows I may be wrong. We have been told repeatedly that this is very curable. But still cancer in any form just scares me. Would love to hear from others who have had same issue's. Am I crazy or should we be looking for another dr who will help us more. From what I've read on this thread they are'nt easy to find. Sorry I have been so long winded. Just very aggrevated with everything and hate being told I have to just sit and wait when I think things should be moving in a different direction.



You are correct about the biopsy, many come back inconclusive, but better to try to find that out first then remove a healthy thyroid for no reason. My biopsy did come back positive (follicular), so the only option I was left with was to remove the side with the cancer and leave the other or remove it all....and my choice was to remove it all because there is no way I wanted to go through the same thing twice. What type of thyroid cancer did his brothers have? My advice is that it sounds like your doctors are proceding as most doctors would, so I would give them more time. You should have the biopsy results in a week possibly 10 days. Hopefully it will come back negative. They are telling you the truth that most thyroid cancers are highly curable. 
I had a 2.5 cm tumor and had a total thyroidectomy. I have been cancer free now for 4 years.
Any questions that you have I will be happy to answer to the best of my ability...you can PM if you would like.


----------



## frdeb1999

They also had Follicular and his 2 masses are 1.2 or under. His one brother has been a survived this for 11 yrs. And other will be at the 2 yr mark. I guess I'm just aggrevated with all the waiting. The waiting and not knowing I think is almost worse then knowing for sure. At least you can deal with it when you have that much. Thank you for letting me vent. I hate to burden him even more when he has enough on his mind to begin with. And thank you also, I may PM you as we get more info. I like to ask questions and know facts. It's nice knowing there are people out there who are or have gone through the same things and you can talk to about it.


----------



## claudia

Well it is good that his nodules are 1.2 cm. The smaller the better! I understand how difficult it is to wait, especially when there is a possibility that it may be cancer. Did the doctor at least give you a time frame as to when the biopsy results will be back? Once the results are back things will move much quicker for you then. Does your endo have a surgeon that they are recommending? One thing that you want to find out is that they have done many, many thyroid surgerys. Here is a wonderful site for you so that you can do some reading that will provide you with many answers to your questions. www.endocrineweb.com.


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## frdeb1999

They said 3-4 days. But since the weekend will be in there we're expecting the high end of it. We have already consulted with the surgeon we will be using. He has a very good reputation and has done alot of these. Thank  you for the link to the site! It's going to be one long weekend, but hopefully at the end we'll know something.


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## onesadduck

I had my psychiatrist order a thyroid test- and got it done the same day. The next day I called in for the results. All that the nurse could tell me was 7.4. She couldn't even tell me 7.4 what!? A week later, a doctor called back (they assigned her to be my Primary care physician for nor. cal, apparently). She said I had hypothyroidism and put me on 25 mg of Levothroid and said they'd check again in two months.

That's it. I have never seen her in person. Only one test. Should I see her in person? Do I need a physical examination? She told me it was unnecessary, but I don't feel right being medicated based on one number with no other examination. She asked if I had any other questions but it went so fast that I couldn't think of anything (I can never think on my feet). I have a family history of Synthroid not working- two different aunts (on both sides of the family) needed Armour Thyroid. Can they switch me before the second blood test?

Thanks in advance,
Alisa


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## claudia

onesadduck said:


> I had my psychiatrist order a thyroid test- and got it done the same day. The next day I called in for the results. All that the nurse could tell me was 7.4. She couldn't even tell me 7.4 what!? A week later, a doctor called back (they assigned her to be my Primary care physician for nor. cal, apparently). She said I had hypothyroidism and put me on 25 mg of Levothroid and said they'd check again in two months.
> 
> That's it. I have never seen her in person. Only one test. Should I see her in person? Do I need a physical examination? She told me it was unnecessary, but I don't feel right being medicated based on one number with no other examination. She asked if I had any other questions but it went so fast that I couldn't think of anything (I can never think on my feet). I have a family history of Synthroid not working- two different aunts (on both sides of the family) needed Armour Thyroid. Can they switch me before the second blood test?
> 
> Thanks in advance,
> Alisa



The test was probably to measure your TSH levels and a 7.4 would indicated that you are hypo. You can ask her for a copy of the labs and see what values they use, but usually anything over 3 would indicate some problem. Next thing you should do is get yourself to an endocronologist and have an exam and testing. Synthroid caused problems with me as I was allergic to the dyes and fillers. I am currently taking Armour and I love it. And yes, you can switch your meds anytime you need to.....just get that appointment with the endo, you really need to find out why your are hypo and let someone who specializes in this treat you.


----------



## disneyauntieX11

frdeb1999 said:


> They said 3-4 days. But since the weekend will be in there we're expecting the high end of it. We have already consulted with the surgeon we will be using. He has a very good reputation and has done alot of these. Thank  you for the link to the site! It's going to be one long weekend, but hopefully at the end we'll know something.



I am so sorry you are going through this.  It is hard time waiting for the results.  I had both Folicular and Papillary Thyroid Cancer in 1999.
One thing that really helped me keep my sanity was an organization called
THYCA (Thyroid Cancer Survivors Assocation).  They have great e-mail support groups.  I was able to ask questions that I needed answered and this was from people who went through the same thing.

There web site is www dot thyca dot org

Gail


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## frdeb1999

Thank you. I did'nt realize that you could end up with both kinds. It is nice hearing about people though who have it in the past tense. I have been looking into groups where I can talk to people. He just does'nt see the need to. I guess it's a man thing! It's aggrevating as they said it would be 3-4 days and it's now been 5 and still nothing. We called today and they said tommorow, but more likely Thursday as they don't count weekend days in that total. That would have been wonderful to know ahead of time. Hopefully we can move foreward in this shortly...because the waiting is just horrid!


----------



## frdeb1999

Just found out that it is cancer. But the dr said the abnormal cell count was extremely low and we had caught it extremely early and that they were mostly polyps. He also said that if there was'nt the strong family history they would reccomend nothing other then medication to shrink and then to wait and watch. But since the history is there he wants it all taken out and says that all should be well then. Keep us in your thoughts and prayers. But under the circumstances this is way better then we were expecting. Best thing is at least we now know something and can deal with it.


----------



## disneyauntieX11

frdeb1999 said:


> Just found out that it is cancer. But the dr said the abnormal cell count was extremely low and we had caught it extremely early and that they were mostly polyps. He also said that if there was'nt the strong family history they would reccomend nothing other then medication to shrink and then to wait and watch. But since the history is there he wants it all taken out and says that all should be well then. Keep us in your thoughts and prayers. But under the circumstances this is way better then we were expecting. Best thing is at least we now know something and can deal with it.



YOu definately want to go to the ThyCa Website and join the e-mail support group list.  It is a Man Thing your husband doesn't want to do it!  I am dealing with the same thing with my father with Prostate Cancer.

Also they really can't tell anything til after they remove the Thyroid and the final pathology report is back.  The Thyca people on the e-mail support group list are great!  The main thing you want is a surgeon that does lots of thyroidectomies.

If you have questions about the surgery feel free to PM me


Gail


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## frdeb1999

Surgery is set for November 15. The surgeon told us it's the start of Follicular. He's telling us that they can tell it's the onset due to how the cells looked when they were tested? Is this a know fact? Everything I read says if the samples are good enough it can tell them quite a bit. The left side was also biopsied and he said there is nothing cancerous on that side. And he would like to leave that intact and only remove the RT side. Although he said they will none the less have a sample done on that and lymph nodes while removing the RT side so that he can be positive it does'nt all need to come out. We meet with him again this week and we still think the whole thing should come out regardless of family history. He said we would discuss it more this week after he looks into all the stuff we gave him on his brothers. In some ways I agree with the dr and if there isn't a problem with the Lft side it should'nt come out due to possible complications and such. On the other hand I think it's also a gamble due to such a high family history with this to leave any of it in. We have spoke to two drs now and they both are in agreement. The one here that we have been going to mainly is extremely good in this field and highly recommended. So it's a decision for us to go to a 3rd to push the issue or decide if they are both right and we should do it this way. Either way we now know something and that at least is good. Any advice would be wonderful.


----------



## claudia

I had follicular cancer on the left side of my thyroid and decided to have the entire thyroid removed, with my surgeon suggesting that was the best way to go. (She told me that this was normal procedure for follicular cancer) Personally for me, I would just not want to have to go through another surgery and worrying that the cancer could spread there was something I didn't want to deal with. Here is a passage from endocrineweb.com that I thought you might want to read:
*Editorial Note from Dr. Norman: Virtually all patients with follicular thyroid cancer should be treated with a total thyroidectomy. If your surgeon says that he/she is going to take out all of the thyroid gland on the side of the neck that has the cancer and "some or most" of the thyroid gland on the other side... then find another surgeon. The only reason for a surgeon to not remove the entire thyroid is because they are afraid of injuring the nerve to the voice box... This usually means that they don't do this operation enough. If your surgeon is afraid of doing the complete operation because they may injure something, then think twice about finding another surgeon that does this operation more frequently. Do not let a surgeon remove your thyroid if they don't do this operation very frequently.*

This is from the American Cancer Society:
Thyroidectomy 

*This operation removes all (total thyroidectomy), nearly all (near-total thyroidectomy) or most (subtotal thyroidectomy) of the thyroid gland. It is the most common surgery for thyroid cancer. It is often used even for differentiated thyroid cancers because papillary thyroid cancer tends to be present in more than one part of the thyroid gland and because follicular cancer is more aggressive.*  They also state that: 

*But having some thyroid left can interfere with some tests to look for cancer recurrence after treatment, such as radioiodine scans. *

For me I am glad that I chose the total thyroidectomy. Please do more research online to come to a decision......


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## disneyauntieX11

frdeb1999 said:


> Surgery is set for November 15. The surgeon told us it's the start of Follicular. He's telling us that they can tell it's the onset due to how the cells looked when they were tested? Is this a know fact? Everything I read says if the samples are good enough it can tell them quite a bit. The left side was also biopsied and he said there is nothing cancerous on that side. And he would like to leave that intact and only remove the RT side. Although he said they will none the less have a sample done on that and lymph nodes while removing the RT side so that he can be positive it does'nt all need to come out. We meet with him again this week and we still think the whole thing should come out regardless of family history. He said we would discuss it more this week after he looks into all the stuff we gave him on his brothers. In some ways I agree with the dr and if there isn't a problem with the Lft side it should'nt come out due to possible complications and such. On the other hand I think it's also a gamble due to such a high family history with this to leave any of it in. We have spoke to two drs now and they both are in agreement. The one here that we have been going to mainly is extremely good in this field and highly recommended. So it's a decision for us to go to a 3rd to push the issue or decide if they are both right and we should do it this way. Either way we now know something and that at least is good. Any advice would be wonderful.



http://www.thyroid.org/professionals/publications/guidelines.html

The Link above is the American Thyroid Associations Guidelines for the Treatment of Thyroid Nodules.  Page 10 recommends Total Thyroidectomy.

On a personal note I has a supicisous biopsy fo Papillary Carcinoma.  The Endo Suggested only half the Thyroid because he thought I might be mad at him if they took out the whole thyroid. My thought is that I would be more made if I had to go back a 2nd time.  The Surgeon who had done Many Thyroidectomies says that with Papillary that there would be a 60% Chance it would be on the other side.   My diagnosis turned out to be Folicular Variant of Papillary Carcinoma which means the outside of the tumor was Folicular and the inside was Papillary.  Folicular is a little more aggressive but treatable.  My tumor was only 1.2 cm but it was not encapsulated so I needed to have the Radio Active Iodine Treatment to ablate the rest.

They kept telling me that I had only an 20% chance of the suspicious biopsy being cancer.  I hit the jackpot.  but I am O.K. now and have been disease free since 2000

You do want surgeon that does allot of thyroidectomies because of vocal cords and parathyroids (these are gland that regulate your Calcium).

Gail


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## frdeb1999

Thanks for the advice. I already told my husband that we'll be calling tommorow and we're in agreement that if he does'nt want to do a total then we'll be looking for a new surgeon. He comes very recommended and we have researched him. Thing is I think we think he's just not being as aggressive as should be given the family history for one and type for 2. I have been already researching looking for a 3rd opinion just in case. We are completely sure that he can do the surgery and well due to everything we've read and also talked to past patients. Thing is we're not willing to go through this again because he wants to be conservative. And in our case I think it needs to be an aggressive approach. Will let you know.


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## frdeb1999

Well after much deliberation we have switched surgeons. We found a Endo and we both are very happy with her. Very friendly and highly recommended. She immediately said not to just have the one half out regardless of the finding since the strong family history is there and abnormal biopsy results. We presented this to the original surgeon and he still refused to do a total until after testing the other side in the operating room. He said it made no sense and then got quite upset that we were "guestioning" his abilities and such. So we politely told him to cancel everything and went with another surgeon the Endo had recommended. We went to the app with the new surgeon who had already been briefed by the Endo who said there was no question that it all had to come out. So we are now in the process of getting another date set. Which will hopefully be before christmas. They said it would hopefully be within the month. Will deffinately be happy when it's out and taken care of! Thank you again for all the advice!


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## newarknut

Hey, I just stumbled upon this thread.  I was diagnosed with papillary cancer last year and had a total thyroidectomy.  It was only on one side but the whole thing was removed.  I had a friend who went through the same thing, only, they took just half out.  They had to operate again to remove the other half after test results came back.  That would be a bummer.  I had the surgery on 9/1/06 and was back in business in a couple days.  I took the radioactive iodine treatment in December of '06.  The biggest hassle with the RI is the diet that precedes it.  Also, if you can take the Thyrogen shots, do it.  It will save you from going off your sythroid and being hypo for a while.  If your insurance will cover the cost, I highly recommend the shots.

You will be fine.  I'm glad you did your research and discovered the need to take out the whole thing the first time!  Smart move!!!

Make sure they put you on Synthroid and not the generic version.  I guess the generic is not as reliable (dosage wise) as the name brand.

Sincerely,


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## claudia

frdeb1999 said:


> Well after much deliberation we have switched surgeons. We found a Endo and we both are very happy with her. Very friendly and highly recommended. She immediately said not to just have the one half out regardless of the finding since the strong family history is there and abnormal biopsy results. We presented this to the original surgeon and he still refused to do a total until after testing the other side in the operating room. He said it made no sense and then got quite upset that we were "guestioning" his abilities and such. So we politely told him to cancel everything and went with another surgeon the Endo had recommended. We went to the app with the new surgeon who had already been briefed by the Endo who said there was no question that it all had to come out. So we are now in the process of getting another date set. Which will hopefully be before christmas. They said it would hopefully be within the month. Will deffinately be happy when it's out and taken care of! Thank you again for all the advice!



I applaud you for advocating for your DH. It can be disastrous when a physician lets his ego get in the way of discussing a patients concerns and questions. I am also glad that you found an endo that you like as she will be playing a very big part in your husbands life from now on. Best wishes to your DH for a speedy recovery. Please keep us posted.


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## frdeb1999

Thank you Claudia. He was'nt the happiest person while I was insisting on alot of this. As I said earlier he is the type that feels that dr's would'nt do something unless it was the best option. He even at one point insinuated that I was doing this in a effort to save money! I did'nt get upset with him though. I know he's going through alot right now and his emotions are running quite high. And after his Endo told him basically everything I had said and almost in the same order he got teary and told me he was so sorry for saying anything to me. I just reninforced that I am in this with him and that I only want the best. And if that means questioning, and insisting then that is what I'm going to do. We have been married 20 yrs and I don't plan on letting him down now!


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## frdeb1999

Tommorow is the day for surgery. Due to a last min cancellation he will be able to still have surgery on the day he was origanally scheduled. With the new surgeon which makes us both very happy. He has had a rough weekend though as we found out that his dad has colon cancer and will need to undergo surgery for it. Seems like it all happens to you at one time. Please keep us in your thoughts and prayers and I will update as soon as I can.


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## Dis1978

I have been on PTU for about 7 years. I take thyroxine with it on a block and replace therapy. My doc wants me to come off it and have the radioactive treatment. I am not keen to have this as I will have to be away from the kids for a couple of weeks. Impossible at present with kids with disablities. Don't know how I am ever going to be able to go for the treatment. Has anyone else been on PTU as long as this? Anyone know of any problems of long term use?
The endo wants me to come off the treatment to see if my thyroid problem has resolved! Last time I tried this I went so hyper I could hardly move due to the palpitations.
Is so annoying when the docs say the levels are fine. My levels are supposedly normal so how come I am exhausted, have bad leg pain, freezing cold and feel so down.


Also I had to take this treatment whilst pregnant and I worry about the effect on my youngest child.


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## klmall

Just wanted to post about DH who had his thryoid removed successfully yesterday. He had been putting it off for at least two years and his endo and 2 surgeons told him he was heading for potentially serious difficulties unless he set a time which he finally did. Everything went very well considering the thryroid was enormous, pressing on his windpipe, starting to wrap around his vocal cords and one one side, extended back to his spine. All the prior biopsies were negative so DH really wanted to avoid surgery. Now he readily admits how good it feels to have the mass gone and to be able to swallow more easily.

We were so lucky to have an excellent hospital and its staff who made the whole experience very positive for DH who has had only had one quick in/out procedure 20+ years ago. To say he was a basket case would be an understatement! But they had him sitting up, eating and talking 1 hour after surgery. He had to spend the night in the Recovery Room because they wanted to monitor his mild sleep apnea but he got one-on-one attention which really eased my worries. His drains came out this morning and the big Queen Anne bandage comes off tomorrow. He came home this afternoon and continues to amaze me, eating, drinking and talking so easily. 

His biopsies will come back Monday, he'll continue his synthroid forever and we hope to close the door on something that he avoided so long (and scared me more than I can ever tell him!). After he spends 10 days at home he should be fine!

I would highly recommend his surgeon and the hospital (Georgetown University, DC) to anyone who needs this surgery. GUH consistently ranks in the top hospitals in the country and we experienced that firsthand.  His surgeon has a special, down to earth, calming attitude and I think that was what convinced him to do what he had to do.

Good luck and blessings on all of you with thryoid problems, especially those trying to figure out what to do.


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## frdeb1999

Sounds like you had a good outcome klmall. My husband had his surgery today and everything went great. He too was in up and around only about 2 hrs post op. He won't be released til tommorow and it's about driving him crazy! He was harrassing the nurses when I left telling them how hungry he was and no Jello! Everything looked good with the frozen sections and like you we won't know 100% til Monday. But we're hoping for the best. We know it's not the end. But just very happy to have it out. Good luck to you! And you and your family will be in my thoughts and prayers.


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## klmall

frdeb1999 - Isn't it wonderful when you see them fussing and wanting to get back to normal? Yes, his surgeon thought things looked good but as you know we want the proof before we can really let our guard down. On the humorous side, DS at college asked for a picture of DH with his collar on, so I obliged and sent one - Of course, DH hammed it up a bit pretending to be in great pain for his photo op.

And the best of luck to you and yours also. I'll add your DH to my special prayers of thanks tonight and let us know next week. 

But you must be so drained too! Now go get some rest!!!  




frdeb1999 said:


> Sounds like you had a good outcome klmall. My husband had his surgery today and everything went great. He too was in up and around only about 2 hrs post op. He won't be released til tommorow and it's about driving him crazy! He was harrassing the nurses when I left telling them how hungry he was and no Jello! Everything looked good with the frozen sections and like you we won't know 100% til Monday. But we're hoping for the best. We know it's not the end. But just very happy to have it out. Good luck to you! And you and your family will be in my thoughts and prayers.


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## frdeb1999

You are deffinately right. It is absolutely wonderful to see them once again being they're old pain selves!  And yes we won't be happy either til we get everything back next week. But am so happy and relieved to just have that portion over with. I about fell into bed last night when I finially wound down enough to get there. Thanks for your thoughts and prayers...you'll be in ours also. And keep me posted! We can compare notes!


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## Belle62442

I got a call from the Dr. today saying that I had an abnormal thyroid test.  He left me instructions to call his nurse for more info.  Unfortunately the nurse never called me back so I have to wait until Mon. to get any answers.  Based on the symptoms I think I have hypo, so it looks like I might be a lifer on this thread!  Is hypothyroidism common in a 22 year old?


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## frdeb1999

Welcome Belle62442. I wish I could give you some info but I'm quite new to this area myself. I know exactly how you feel though with the dr thing. They did the same thing to us and had us waiting also. This thread and those on it are wonderful. Hope all goes well for you!


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## frdeb1999

UPDATE....Just wanted to let you all know that my husbands results came back after the whole thyroid was tested and it was all benign! They tested it not once...but twice to make completely sure. I can't even begin to tell you how relieved and happy we were to hear this. We questioned the biopsy results and they told us they were nothing but abnormal cells to begin with and not even enough to count. But since he had such large Goiters they would have had to remove them anyhow with surgery. Makes you wonder. But we had it retested simply because we did'nt believe the frozen section test. We paid for the 2nd pathology lab out of pocket because we were so afraid of it not being true. Needless to say it was a very Happy Thanksgiving. He went on thyroid meds Friday and so far seems to be doing very well. We shall see. And the stitches come out tommorow. Hopefully all will continue to go well. None the less with his family history he will have no choice but to keep watching and making sure regardless. Thank you for all your support through this!


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## GoHerd1028

*This is an Interesting thread.

At the age of 28 I was diagnoxed with Medullary Thyroid carcinoma the rarest form of the disease.  After the diagnosis I had genetic testing done that showed I have Multiple Endrocrine Neoplasia (MEN Type 2A)  With this syndrome I can develop tumors on other endocrine glands over the course of my life.  As it so happens my labs recently came back out of range for the Parathyroid hormones.  I blew it off but the doctor took it more seriously than I did.  It seems that it is possible I might have a tumor now on the parathyroid gland or on the adrenal gland causing the parathyroid homrones to be elevated.  I feel like I have walked this road before and it is not an easy one.  My original cancer was found by accident.  We were testing some new ultrasound equipment at work and I was the test patient for the neck region...low and behold...there it was and I was not having any sypmtoms.  See God does work in mysterious ways.  I am glad that I have found this thread and hope that maybe I might be able to be of help to someone else.  Feel free to e-mail me GoHerd1028@aol.com

Steve *


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## traceblue

Blueeyes101817 said:


> I have been having thyroid problems since  i was 8 years old..i am now 22..
> 
> When I was 8, i had a tumor (benign) and half of my thyroid removed..When i was 15, a few more tumors grew back and they removed them and the other half of my thyroid--They then put me on Synthroid.  When I was 16, I had scar tissue revision..
> 
> Since my surgeries, especially the last 2, my thyroid levels go crazy--Every 6 months or so I have to get my levels changed..i go from being hypo to hyper all of the time.. After this semester, I will be getting some more tests done to see if there are any more tumors in there..i have been having a hard time holding my neck up again and my necks been really sore and ive been having difficulty swallowing...
> 
> Its nice to see this thread!




I thought I was going crazy,,  I just could not understand.  15 Years ago, I had the first tumor at my thyroid taken out it was benign, 9 years ago I had the other side taken out it was benign.  Over the past 1 or so I have had trouble swallowing, my neck is sore when I turn it to far to look at something and when I sleep I have huge amount of pressure in my neck and it is hard to get comfortable..  I figured the doctor would tell me i was nuts that there was nothing there and that it could not grow back.... I guess I was wrong and it does happen.. I will make an appointment...

Your posting has really made me feel like I have not lost it and this is realy
Thanks

Trace


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## nicdanh

Hi Thyroid friends! I was diagnosed 9 years ago with Hypothyroid with graves diesease. I found out when i was trying to get pregnant with my first child and could not get pregnant. I now have 3 beautiful children and still suffer from the diesease. My endo doctor wants to kill my thyroid, but I have mixed feelings about it. 

Michelle


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## SammieG

does anyone currently have or have you had Pre-tibial myxdema?

I have been hyper (now controlled) with Thyroid eye disease and PTM for 8 years
would love to know if anyone has had any success with any treatments for the PTM


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## Aunt Flancy

GoHerd1028 said:


> *This is an Interesting thread.
> 
> At the age of 28 I was diagnoxed with Medullary Thyroid carcinoma the rarest form of the disease.  After the diagnosis I had genetic testing done that showed I have Multiple Endrocrine Neoplasia (MEN Type 2A)  With this syndrome I can develop tumors on other endocrine glands over the course of my life.  As it so happens my labs recently came back out of range for the Parathyroid hormones.  I blew it off but the doctor took it more seriously than I did.  It seems that it is possible I might have a tumor now on the parathyroid gland or on the adrenal gland causing the parathyroid homrones to be elevated.  I feel like I have walked this road before and it is not an easy one.  My original cancer was found by accident.  We were testing some new ultrasound equipment at work and I was the test patient for the neck region...low and behold...there it was and I was not having any sypmtoms.  See God does work in mysterious ways.  I am glad that I have found this thread and hope that maybe I might be able to be of help to someone else.  Feel free to e-mail me GoHerd1028@aol.com
> 
> Steve *




I am a meddie too.  I was lucky also and my cancer was found early.  I had huge nodules on the right side of my thyroid that were growing rapidly, but all of my thyroid tests and biopsies were normal.  They decided to remove the half of my thyroid with the nodules, but during surgery the Dr. decided the other side looked "funny" so he took the whole thing out.  They called me five days later and told me I had cancer.  I went back four weeks later and had a left modified radical neck dissection.  It has been almost two years now and all of my blood work is good.  I still go to the oncologist every three months and the enodcrinologist about every two months.  I have problems getting my TSH regulated (I take 200mcg Synthroid and 10mcg Cytomel right now) and the endocrinologist has found other problems that I take all kinds of medicine for, but I am so thankful it was found early.  I am a single mom of two teenage boys and can't imagine leaving them!


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## goldcupmom

All you thyroid experts......

Just back from my Dr and an annual physical.  She said my thyroid is 'borderline' enlarged.  doing bloodwork.  

12/7 I went to breast dr.  -( due to my sister's breast cancer 3 yrs ago, I go yearly just because) - she noticed an enlarged node under left armpit.  Did an ultrasound & said it was normal, just puffy.  

I had pneumonia 12/18 when I went in running a 102+ fever, 5 days on Zpak, 12/31 woke up with horrific sore throat on one side, swollen nodes.  Nodes still swollen, ,lots of sinus drainage, etc.  Starting another round of antibiotics. DD had same, including nodes & now has an enlarged sore spleen.

However, I'm the worlds worst worriwort & now wonder if the glands could be
from the thyroid & it could be cancer.  Any input?

thanks much!!


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## Disneysnel

I just found this thread - couldn't sleep. 

As some other posts have said, they have all the symptoms of HYPO as do I and the doctors keep telling me my blood tests are normal! Could it be that MY normal is a little higher than others? I don't get it, I mean EVERY symptom.

My story:
I was diagnosed by my gyno about 17 years ago, he asked what the big lump was in my throat, I thought it was an adam's apple - lol, he told me girls don't have them and sent me to an endo. I felt fine - never had any problems with my weight or anything.

Well, the endo put me on synthroid to "shrink the nodule" ??? and it grew larger so I had to have it removed turns out there were over 50 of them all over my thyroid and they took out the entire thing except for a para. They were all benign but I wonder what causes this?

I grew up in So Cali around lots of orange groves and wonder if maybe the DDT did it? 

Looking at pictures of me when I was like 6 years old you can see a bump in my throat. No one else in my family has ever had this.

I do have a question that no one - including medical professionals has ever been able to answer: If we(those without thyroids) exercise regularly does our metabolism go up like other people's do or are we dependent on that little pill, period?


So glad to have found this thread and it is nice to know that Im not the only one   but I am also sad to know others are suffering.


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## Christine

Disneysnel said:


> I just found this thread - couldn't sleep.
> 
> As some other posts have said, they have all the symptoms of HYPO as do I and the doctors keep telling me my blood tests are normal! Could it be that MY normal is a little higher than others? I don't get it, I mean EVERY symptom.
> 
> My story:
> I was diagnosed by my gyno about 17 years ago, he asked what the big lump was in my throat, I thought it was an adam's apple - lol, he told me girls don't have them and sent me to an endo. I felt fine - never had any problems with my weight or anything.
> 
> Well, the endo put me on synthroid to "shrink the nodule" ??? and it grew larger so I had to have it removed turns out there were over 50 of them all over my thyroid and they took out the entire thing except for a para. They were all benign but I wonder what causes this?
> 
> I grew up in So Cali around lots of orange groves and wonder if maybe the DDT did it?
> 
> Looking at pictures of me when I was like 6 years old you can see a bump in my throat. No one else in my family has ever had this.
> 
> I do have a question that no one - including medical professionals has ever been able to answer: If we(those without thyroids) exercise regularly does our metabolism go up like other people's do or are we dependent on that little pill, period?
> 
> 
> So glad to have found this thread and it is nice to know that Im not the only one   but I am also sad to know others are suffering.




Do you know what your TSH levels are?  T3 and T4.  This would give a better picture of how you are falling within the lab ranges.

Exercise:  it really doesn't speed up your metabolism.  Your metabolism is what it is.  Exercise is energy expended.  Energy expended burns calories.  Plain and simple.  Each person has a set point in their metabolism.  If you are on thyroid meds, that is pretty much controlled by the medication.  If you exercise though, you will burn calories like everyone else.


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## Christine

goldcupmom said:


> However, I'm the worlds worst worriwort & now wonder if the glands could be
> from the thyroid & it could be cancer.  Any input?
> 
> thanks much!!




Most people with thyroid cancer (even advanced) didn't detect any swollen nodes.  Thyroid cancer does spread to the lymph nodes but it is usually the ones way inside your neck that only the surgeons can get to.


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## Disneysnel

Thank you so much Christine!

 Well, there goes THAT excuse for not exercising -  
I tried to find my last lab report but must have tossed it. I will post after my next labs.

Hope everyone is doing good or at least better  

Kelley


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## henrylovespooh

Just found this thread - what a great idea!

I was diagnosed with thyroid cancer 11 years ago.  My gyn felt a lump in my neck near one of my lymph nodes and had me go see a specialist.  They biopsied my thyroid - came back clean, so they only removed the lump.  When they tested the lump, it was full of cancer -  - so four days later I went back to have my thyroid taken out.  

They left a tiny bit of my thyroid in, near my parathyroid, and I had radiation to kill off that last little bit of my thyroid.

It seems most people are good to go after that one radiation treatment, but every year when I went back for a follow-up test and scan, they found thyroid cells.  For about five years, I had radiation, and then got a break because I had two kids.  Since then, I've had radiation one more time.  My doctor has since decided to see how things go on a year-to-year basis and maybe not have radiation every time the cells come back.  I like that - I can't stand to be off my synthroid for six weeks - it turns me into a zombie.

I never heard about thyroid cancer, but I've been asked to talk to three other women who have been diagnosed in the past few years.  

So glad to have a site where I can plan for WDW and talk to people about thyroid issues!


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## henrylovespooh

Christine said:


> Most people with thyroid cancer (even advanced) didn't detect any swollen nodes.  Thyroid cancer does spread to the lymph nodes but it is usually the ones way inside your neck that only the surgeons can get to.



Forgot to mention this in my last post - the lump in my neck was easily felt.  I felt the lump about a year before my gyn found it - but when I asked a friend who was a nurse, she told me my glands were swollen and to take my vitamins.  Whenever I did feel the lump again, I thought I was getting sick.  It seems so stupid now, but at the time it made sense.  My tumor was attached to my lymph node (the cancer had overrun the node) and the surgeon said it was the size of a large peach pit.

I'm actually thankful for the lump - I felt fine, so without the lump God knows when I would have figured out something was wrong with me.


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## teacups

nicdanh said:


> Hi Thyroid friends! I was diagnosed 9 years ago with Hypothyroid with graves diesease. I found out when i was trying to get pregnant with my first child and could not get pregnant. I now have 3 beautiful children and still suffer from the diesease. My endo doctor wants to kill my thyroid, but I have mixed feelings about it.
> 
> Michelle



Can I ask... why would they kill your thyroid when you are already hypo? 
Do you mean HYPER thryroid with Graves?   I am hypo with Graves... BECAUSE they killed my thryroid!  You can kill the thyroid but that DOES NOT  kill or treat the graves.  PLEASE read all you can before you do that.  If I could go back there is no way in you-know-what that I'd EVER do it!   Really, I'd never do it again.


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## IMALOVNDISNEY

I'm glad I found this thread.  I got my dx of Hypo 23yrs.ago at the age of 22.  For many many years I took my meds, but, never consistantly ( I know now how stupid that was.) Well, 3 yrs. ago I was having major issues with memory (short term was shot and would forget how to tie my shoes and even forgot how to get home from work), body/muscle pain(my entire body would go into spasms,I would loose control of my arms and legs. Dropping things or falling because my legs wouldn't work) constant migranes and nasusea 24/7. It was a very scary time for me.  I thought I was going crazy and or dying.  All of this was because my thyroid was now Hyper. Not sure what my levels were, but, PCP said they were 4x what they should be and that my body couldn't take in all that hormone.  Went to an Endo and was told that I could of had a stroke had I let it go. And that my body was shutting down on me. I  ended up doing the RI twice. And was told I have multi nodule goiters. So, now I take my meds everyday like I'm suppose to. My levels still flip flop from time to time but not to bad. 

I never took this very seriously, but, now realize that my thyroid controls so much more that you can imagine. I now know this is why I have miscarried 4 times. All 4 times I wasn't regular with my meds.  I have 1 healthy DD and was very faithfull with meds before conseption and during preg.  And now my eyesite has diminished drasticly over the last 3 yrs. 

 So, for those of you that are in the begining of your dx.  Don't stop until you get all the answers you are looking for. Educate yourself as much as possible, and please take your meds as perscribed.  It really is important. 

Just a side note:  I was told that there is connection with Thyroid Disease, Fybromyalgia and MS.  Which is something else that my Dr's are looking into at this time.  PCP said that some studies show that most people with MS have a thyroid issue.  And studies are also showing that there is a large number of people that are dx'd with Fybromyalgia are later dx'd with MS.


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## belle&sebastiansmom

Wow.  Glad I found this thread.  I've got a lot of reading to do.

I was diagnosed hypo nearly 5 years ago after the birth of my daughter.  Meds controlled it.  Just gave birth to a beautiful boy 5 months ago.  

In January, the endocrinologist felt nodes in my neck.  Prepared me for the worst (the most scary time of my life).  He did an ultrasound and said it was textbook Hashimoto's, and that I didn't need any further tests to totally rule out cancer.  

In your experiences, is this true?  I will undergo any test to ensure that it is not cancer.  Is the ultrasound really enough?  He said the "nodes" that he felt were really the misshapen thyroid gland from the Hashimoto's.

Please let me know what your thoughts are on this.  
Thanks so much.


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## claudia

> I was diagnosed hypo nearly 5 years ago after the birth of my daughter. Meds controlled it. Just gave birth to a beautiful boy 5 months ago.
> 
> In January, the endocrinologist felt nodes in my neck. Prepared me for the worst (the most scary time of my life). He did an ultrasound and said it was textbook Hashimoto's, and that I didn't need any further tests to totally rule out cancer.
> 
> In your experiences, is this true? I will undergo any test to ensure that it is not cancer. Is the ultrasound really enough? He said the "nodes" that he felt were really the misshapen thyroid gland from the Hashimoto's.
> 
> Please let me know what your thoughts are on this.
> Thanks so much.




My endo first diagnosed me with Hashimotos, but decided to do a biopsy on the nodes he felt and they did test postivie for cancer. Now I AM NOT in anyway telling you that it may be cancer....I only telling you of my experience. If I were you I would probably get a second opinion from another endo. Remember the odds are very remote that it would be cancer so please do not even think it.....just go for the second opinion because it sounds like you do not really trust this endo. Best of luck and congrats on your new son!


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## angwill

Disneysnel said:


> Thank you so much Christine!
> 
> Well, there goes THAT excuse for not exercising -
> I tried to find my last lab report but must have tossed it. I will post after my next labs.
> 
> Hope everyone is doing good or at least better
> 
> Kelley



Here is an excuse ot exercise...when my weight has gone down I need less thyroid med to keep my body even and when my weight has gone up I have needed more.  Maybe just a decrease in dosage from exercising will give you something to exercise for now.


----------



## belle&sebastiansmom

claudia said:


> My endo first diagnosed me with Hashimotos, but decided to do a biopsy on the nodes he felt and they did test postivie for cancer. Now I AM NOT in anyway telling you that it may be cancer....I only telling you of my experience. If I were you I would probably get a second opinion from another endo. Remember the odds are very remote that it would be cancer so please do not even think it.....just go for the second opinion because it sounds like you do not really trust this endo. Best of luck and congrats on your new son!



Thanks for your response.  I went to the endocrinologist today, and he's changing my dosage (of course), and I did ask him if there were any further tests I needed.  He said that the ultrasound showed the typical Hashimoto's thyroid gland, that there were not even any nodes to biopsy.  The bumps and lumps he felt showed up on the ultrasound as the gland (don't think I made that clear in my first post.)   I made it clear to him that I didn't want any little terrible thing hiding out somewhere, and he said that's why he does the ultrasounds, so he can see it in real time, the entire area.  He's a new doctor since our move and it can all be so overwhelming.  Still not sure if I should get a second opinion.  AHHHHHHH!

So is this the way it works:  There are nodes and there is the Hashimoto's diseased gland.  They biopsy nodes, but not the gland?

I hope that your treatment went worked for you and that you're healthy!  Many blessings.


----------



## claudia

belle&sebastiansmom said:


> Thanks for your response.  I went to the endocrinologist today, and he's changing my dosage (of course), and I did ask him if there were any further tests I needed.  He said that the ultrasound showed the typical Hashimoto's thyroid gland, that there were not even any nodes to biopsy.  The bumps and lumps he felt showed up on the ultrasound as the gland (don't think I made that clear in my first post.)   I made it clear to him that I didn't want any little terrible thing hiding out somewhere, and he said that's why he does the ultrasounds, so he can see it in real time, the entire area.  He's a new doctor since our move and it can all be so overwhelming.  Still not sure if I should get a second opinion.  AHHHHHHH!
> 
> So is this the way it works:  There are nodes and there is the Hashimoto's diseased gland.  They biopsy nodes, but not the gland?
> 
> I hope that your treatment went worked for you and that you're healthy!  Many blessings.




That's good news. Yes, they biopsy the nodules if they are questionable. Since you have none and your gland itself is inflammed it there is nothing to biopsy. Here is a great site that you might what to check out, it has tons of info. http://endocrineweb.com/


----------



## DisneyMissy318

I posted a general CB thread about this condition yesterday - but thought I would post here as well after I found this thread in another post!  I'm going to be soon dealing with thyroid problems with my DD10.  We saw an ENT on Wednesday after her GP referred her for a severe ear infection.  While at the ENT - he discovered that DD has Lingual Thyroid condition - which means the thyroid did not travel down the canal to the normal position during development.  DD's thyroid is at the very back of her tongue.  If she sticks out her tongue - "ala Gene Simmmons" - you can see "something" back there.  Dr. felt her throat area to see if he could feel the thyroid - to no avail - although he said he might not be able to feel it on either of us (her parents) either.  So... right now, we are treating the ear infection with a strong antibiotic and ear drops... we go back in 10 days and we will at that time see what's up with the thyroid.

Of course I have read too much info on the internet and I'm just plain worried!  This is a very rare annomoly (so rare, I can't even spell anomoly!)   I have read that hypothyroidism is very common in those that have lingual thyroid condition - so I will read what you guys have written - I appreciate you sharing your experiences.


----------



## Piglet

So glad I found this thread.  I was just at the doctors for possible gall bladder problems and she found that my thyroid was enlarged.  I went for blood work this morning and have an ultrasound scheduled for Friday.


----------



## teacups

Piglet said:


> So glad I found this thread.  I was just at the doctors for possible gall bladder problems and she found that my thyroid was enlarged.  I went for blood work this morning and have an ultrasound scheduled for Friday.



Did they say it might be Graves Disease?
Let us know when you get the results.
Hugs to you!


----------



## teacups

DisneyMissy318 said:


> I posted a general CB thread about this condition yesterday - but thought I would post here as well after I found this thread in another post!  I'm going to be soon dealing with thyroid problems with my DD10.  We saw an ENT on Wednesday after her GP referred her for a severe ear infection.  While at the ENT - he discovered that DD has Lingual Thyroid condition - which means the thyroid did not travel down the canal to the normal position during development.  DD's thyroid is at the very back of her tongue.  If she sticks out her tongue - "ala Gene Simmmons" - you can see "something" back there.  Dr. felt her throat area to see if he could feel the thyroid - to no avail - although he said he might not be able to feel it on either of us (her parents) either.  So... right now, we are treating the ear infection with a strong antibiotic and ear drops... we go back in 10 days and we will at that time see what's up with the thyroid.
> 
> Of course I have read too much info on the internet and I'm just plain worried!  This is a very rare annomoly (so rare, I can't even spell anomoly!)   I have read that hypothyroidism is very common in those that have lingual thyroid condition - so I will read what you guys have written - I appreciate you sharing your experiences.



Having a daughter 9 of my own, and I myself was DX'd with a thyroid condition when I was a teen... I must send well wishes your way!    Many people do well with replacement meds.  Is her gland actually working?  Be leary of radiation if that topic ever comes up for any reason. I had it and now warn people off it like crazy.      Hugs to yu and your girl


----------



## DisneyMissy318

Thanks for your reply Teacups....

She hasn't had any bloodwork as of yet - our appointment with the ENT at UVA is on June 3... Madi is 5'0 already (as tall as her Mom!) - her Dad is 6'3 - so seems like "normal" growth - although I could see if there was a problem with metabolism as she carries a bit more weight than normal.  She also has no energy and gets tired quickly.  We are hoping to find out a lot more on June 3.

I'll be sure to be back to share the results and get advice from you guys!

Thanks!


----------



## scubamouse

Mind if I join in?

I was dx with Hashimotos about 3 years ago and have been on the same synthroid/cytomel combo for all that time without issue.  I think I've spiked hyper based on jittery overall, rapid heartbeat and easier than expected weight loss (I've  been on WW since March).  I'm waiting on my bloodwork results but I wondering if other people have cycled hyper after a Hashimotos dx?  If so, how long does it generally last and how much do your meds adjust?

TIA


----------



## angwill

Your thyroid will get hyper when you lose weight.  The books I have read say that meds are prescribed depending on weight.  The more you weight the more thyroid homone your body needs and vs versa.  I went on weight watchers and my medication went down with my weight when I would become hyper.  It is supposed to take 6 weeks to regulate on new meds but for some reason I feel the effects right away with switches in meds.  

HTH,
Ang


----------



## goofyisinphilly

Hi everyone.  I am new to this thread.  I am 26 and have had hypothyroidism for almost 2 years.  Last week an my annual gyn appt the dr noticed that my thyroid was enlarged.  So off to my general prac dr for an ultrasound.  My favorite part was that they'll call me in 3-9 days.  

At this rate I could gain like 12 lbs in that time.  I always know when my thyroid is off b/c I gain weight at an alarming rate.  As in last week was 6 lbs.  That is with WW and walking/biking 5-6 miles a day.  Let's hope they call sooner rather than later.


----------



## Sugarfoot

I had nodules on my thyroid about 5 years ago, had surgery to remove part of my thyroid and the isthmus.

Last year more nodules were discovered and I almost cried, I didn't want surgery again!  But the surgeon I went to before no longer works at the hospital, so they sent me to someone else and he is wonderful!!

He sent me for an ultrasound guided fine needle aspiration, and since it was benign he said we'd just "watch it."  Six months later I had another ultrasound and nothing had changed, so he said to wait another year and have another ultrasound and if nothing has changed by that time he will just say I'm one of many who get nodules and leave me alone.

I'm all for that!!   

I do take thyroid medication daily and have a "permanent smile" on my neck.


----------



## Lisa_M

I'm so glad I found this thread.  I need a little advice.  My two sisters and mother all have hypothyroidism.  My youngest sister (age 15) was diagnosed with Hashimoto's at age 10.  She has been on Synthroid since.  She goes to a good Endo, but he is out of town, she lives in a small town, so she only goes about once a year even though she should be there twice a year.  My mom is quite the procrastinator, which is why she doesn't get there enough and I live in a different state so I can't take her.  She goes for bloodwork every 3 months and it is usually normal.  

Anyway, she is visiting for the summer and is having a bit of a rough time.  She has been exercising at our fitness center, eating healthy, but just keeps gaining weight (about 20-30lbs in the last year).   She is feeling so discouraged.  As you can guess she is overweight and I'm supposed to take her shopping for clothes and stuff for school.  Well we went to Lane Bryant and everything looked bad on her (maybe they are cutting clothes differently now or maybe she just gained weight in weird places).  Anyway, on the way home she cried in the car and I felt so helpless.  I told her that I know she's frustrated, but we'll find stuff that looks good, we just have to keep looking.  I don't know where because plus size clothing is hard to come by.  Any suggestions for stores?

Also, I know she is upset because my other sister was a size 24 for a long time and is now a 28 and she really works out hard, but the weight just doesn't seem to come off.  I think maybe she is afraid it will be like that for her.  

To make matters worse, my youngest sister has a lot of facial hair that I guess comes with the disorder.  Last time she was at the doctor he said she may have Polycystic Ovarian Syndrome.  She is so self concious about it, she just wants me to wax it off, but my mom is a PITA and says don't do it because it will come in like a man's beard, etc.  She had blood work to find out if it was PCOS, but of course, the lab lost it and my mom never called to have it reordered.  

soooo....anyone have any tips, advice, suggestions for me or my sister?  Being in high school, all these things are very hard for her to deal with.  She loves to read so if there are any book suggestions, we are open to them.  High school is hard enough without all this.  

If you made it this far....thanks for reading


----------



## teacups

I'd love to take a peek at her thyroid blood test results.  
Thyroid is SO HARD to deal with, and if you are an unlucky one who doesnt react as expected once meds start, then you're really in for an uphill battle.

Does she have access to her tests?  She should. And she should learn what they mean with some good research.  Without seeing her labs, you could suggest that she ask her doc if her levels are ok... and where in the range she falls. You might talk to him about other meds. Or even other diagnoses...

I sure hope she gets help.


----------



## angwill

Lisa_M said:


> I'm so glad I found this thread.  I need a little advice.  My two sisters and mother all have hypothyroidism.  My youngest sister (age 15) was diagnosed with Hashimoto's at age 10.  She has been on Synthroid since.  She goes to a good Endo, but he is out of town, she lives in a small town, so she only goes about once a year even though she should be there twice a year.  My mom is quite the procrastinator, which is why she doesn't get there enough and I live in a different state so I can't take her.  She goes for bloodwork every 3 months and it is usually normal.
> 
> Anyway, she is visiting for the summer and is having a bit of a rough time.  She has been exercising at our fitness center, eating healthy, but just keeps gaining weight (about 20-30lbs in the last year).   She is feeling so discouraged.  As you can guess she is overweight and I'm supposed to take her shopping for clothes and stuff for school.  Well we went to Lane Bryant and everything looked bad on her (maybe they are cutting clothes differently now or maybe she just gained weight in weird places).  Anyway, on the way home she cried in the car and I felt so helpless.  I told her that I know she's frustrated, but we'll find stuff that looks good, we just have to keep looking.  I don't know where because plus size clothing is hard to come by.  Any suggestions for stores?
> 
> Also, I know she is upset because my other sister was a size 24 for a long time and is now a 28 and she really works out hard, but the weight just doesn't seem to come off.  I think maybe she is afraid it will be like that for her.
> 
> To make matters worse, my youngest sister has a lot of facial hair that I guess comes with the disorder.  Last time she was at the doctor he said she may have Polycystic Ovarian Syndrome.  She is so self concious about it, she just wants me to wax it off, but my mom is a PITA and says don't do it because it will come in like a man's beard, etc.  She had blood work to find out if it was PCOS, but of course, the lab lost it and my mom never called to have it reordered.
> 
> soooo....anyone have any tips, advice, suggestions for me or my sister?  Being in high school, all these things are very hard for her to deal with.  She loves to read so if there are any book suggestions, we are open to them.  High school is hard enough without all this.
> 
> If you made it this far....thanks for reading



Hi, my heart goes out to your little sister.  I have the same issues lately that my thyroid is low and I have gained 35 lbs in the last year with 10 of them being in the last month with watching and writing all my food down (gave up on WW since I was on the lowest points they suggest and still gaining) and exercising 45 minutes of cardio and 15 min of weights.  Go figure.  I am off to my doctor tomorrow to discuss it and get a TSH check.  Not much you can do except be careful of what you eat and exercise.  Along with keeping in touch with the doctor.  

As for clothing.  There is Avenue and Fashion bug plus or online there is Woman Within and Roaman's.  Google the store names with coupon after them and you will find lots of discounts.  The online stores have lengths listed so if she likes longer tops she can easily find them there.  

Good luck and tell your sister she is not alone and not to give up trying.


----------



## jennz

Hi everyone!  Love this thread...I too had thyroid cancer, gp noticed my swollen thryoid in  when I was 27, watched it for 6 months, biopsied - not definitive, went in for surgery, did a frozen cell biopsy that showed benign, got home and the next day they called and said it was actually malignant and come back in and get the rest out.  A complication from my surgeries...my parathyroids died and my body now does not produce or absorb calcium without lots of help (meds).  

Must go, dd isn't feeling well and wants me to lay with her. Will read and write more tomorrow.

Oh - I also had Hashimoto's, they discovered that when they removed my thyroid, said I'd had it for a while.

I've always been told t.cancer isn't hereditary - anyone heard different?  I'm also watching for signs in dd of Hashimoto's, any certain signs to look for?  Growth, she's always been top of the charts and used to be SKINNY.  Now at 10 she's a little heavier than many of her peers, but she could also just be gaining and getting ready to grow...I just worry about her...


----------



## nannerbadnanner

Hi everyone!  I just discovered this thread and wanted to post.  I lost my dad in January to thyroid cancer (very rare type called anaplastic carcinoma). He was diagnosed in 2004 and given 6 months to live, but he was a fighter and lived for close to 4 years after his diagnosis.

I am also hypothyroid, and I honestly get completely freaked at the thought of cancer.  I do have a yearly ultrasound, and so far, they haven't found anything that looks suspicious.  Of course, fears aren't always rational!


----------



## jennz

nannerbadnanner said:


> Hi everyone!  I just discovered this thread and wanted to post.  I lost my dad in January to thyroid cancer (very rare type called anaplastic carcinoma). He was diagnosed in 2004 and given 6 months to live, but he was a fighter and lived for close to 4 years after his diagnosis.
> 
> I am also hypothyroid, and I honestly get completely freaked at the thought of cancer.  I do have a yearly ultrasound, and so far, they haven't found anything that looks suspicious.  Of course, fears aren't always rational!



I'm so sorry about your dad.   

No fears aren't rational, you're absolutely right.    Are you seeing an endo?  I would think that if you're getting annual ultrasounds they will be able to find any cancer before it grows too much.  I, like many others who've posted, had my cancer and they watched the growth for 6 months before they decided to  operate...the good news about this cancer is it's slow growing.  So remind yourself of that when you start to get scared.  You're aware of it and monitoring so it won't take long to find it if it's there...


----------



## nannerbadnanner

jennz said:


> I'm so sorry about your dad.
> 
> No fears aren't rational, you're absolutely right.    Are you seeing an endo?  I would think that if you're getting annual ultrasounds they will be able to find any cancer before it grows too much.  I, like many others who've posted, had my cancer and they watched the growth for 6 months before they decided to  operate...the good news about this cancer is it's slow growing.  So remind yourself of that when you start to get scared.  You're aware of it and monitoring so it won't take long to find it if it's there...



Thanks for the encouragement.  Currently, my general practioner has been doing my testing and refers me out when there is a problem and for ultrasounds.  She has had thyroid cancer so she has been great about everything. The endo I was using previously was awful so I stopped going to her. She was more worried about selling me a diet plan that she had created than helping my condition.


----------



## Babypandaroo

Hi. I have hypothyroidism too.   I was diagnosed with it when i was 12 or 13. My parents didn't find out i had it till i went with them to my sisters thyroid doctor and he took one look at me and said i had it and i had blood tests done and it confirmed it. Also my dad has it as well so we all on synthroid medication.  . I'm 28 now and still the same size i was when i was 13. I see a family physician now instead on an endocrinologist. I get tired alot but that's from babysitting a one year old these days. lol


----------



## Aunt Flancy

Lisa_M said:


> I'm so glad I found this thread.  I need a little advice.  My two sisters and mother all have hypothyroidism.  My youngest sister (age 15) was diagnosed with Hashimoto's at age 10.  She has been on Synthroid since.  She goes to a good Endo, but he is out of town, she lives in a small town, so she only goes about once a year even though she should be there twice a year.  My mom is quite the procrastinator, which is why she doesn't get there enough and I live in a different state so I can't take her.  She goes for bloodwork every 3 months and it is usually normal.
> 
> Anyway, she is visiting for the summer and is having a bit of a rough time.  She has been exercising at our fitness center, eating healthy, but just keeps gaining weight (about 20-30lbs in the last year).   She is feeling so discouraged.  As you can guess she is overweight and I'm supposed to take her shopping for clothes and stuff for school.  Well we went to Lane Bryant and everything looked bad on her (maybe they are cutting clothes differently now or maybe she just gained weight in weird places).  Anyway, on the way home she cried in the car and I felt so helpless.  I told her that I know she's frustrated, but we'll find stuff that looks good, we just have to keep looking.  I don't know where because plus size clothing is hard to come by.  Any suggestions for stores?
> 
> Also, I know she is upset because my other sister was a size 24 for a long time and is now a 28 and she really works out hard, but the weight just doesn't seem to come off.  I think maybe she is afraid it will be like that for her.
> 
> To make matters worse, my youngest sister has a lot of facial hair that I guess comes with the disorder.  Last time she was at the doctor he said she may have Polycystic Ovarian Syndrome.  She is so self concious about it, she just wants me to wax it off, but my mom is a PITA and says don't do it because it will come in like a man's beard, etc.  She had blood work to find out if it was PCOS, but of course, the lab lost it and my mom never called to have it reordered.
> 
> soooo....anyone have any tips, advice, suggestions for me or my sister?  Being in high school, all these things are very hard for her to deal with.  She loves to read so if there are any book suggestions, we are open to them.  High school is hard enough without all this.
> 
> If you made it this far....thanks for reading



I am no help with the weight issue ( I have gained 50 pounds in the two years since I had my thyroid removed) but I wanted to tell you that Torrid is a good store for plus sized teenagers or young people.  www.torrid.com


----------



## frdeb1999

Update on DH. He was given a clean bill of health after having his 6 month ultrasounds. It has been rough on and off for the past 6 months trying to get him on the right med levels. And they have just upped them again. But they did tell us that it would be probably at least a year until they had them regulated. So we're being patient. He is feeling so much better though. We are both so very glad that we switched surgeons and did'nt allow the 1st to do the partial removal as he wanted. I think that would of in hind sight been a bad thing all the way around. Just wanted to say to all the new people...Welcome! This thread is a wonderful way to help ease your mind and get answers and opinions. It helped me tremendously! I'm not by any means an expert on this subject and am learning as I go. But one thing I can tell you....if you don't like the answers or treatment your getting from your dr....make sure you look for another. We are so very glad that we did. And we now have a wonderful Endo who actually listens and explains. Will continue to update. Thanks all once again!


----------



## TinkerCarol

I am a almost 6 year thyroid cancer survivor.  Had my whole thyroid removed in Sept, 2002.  I hate going through the yearly hypo and scan.  This year I went the Genzyme shot route.  It was a lot easier, but still hard to take.  People always say "You are so lucky it is only thyroid cancer!".  Yea, I am so lucky I had cancer!!!  There is a great thyroid group online called thyca.org.  I get a lot of info and strenth from that sight.  I am so happy you started this thread.  Nice to have comfort for a mutual problem and mix a litlle Pixie Dust in with it.  Prayers for all of us says the Queen!!!!  And great THS's for all says the King.


----------



## DisneyMissy318

I wanted to come back and post about my DD.

It was discovered that the entire thyroid gland was growing on the back of her tongue - and it was growing fast.  Because of the size it was decided that it had to be removed.  Initially they decided to implant a portion in her forearm, but at the last minute decided to just leave a small piece in place on her tongue.  We go today for her post-op check-up and to find out the THS levels and to see when they are going to start Synthroid.

I have been putting a list together of questions to ask at today's appointment -   The surgeon and his resident are very good at what they do - but I think they assume that you know what they know and are quick to answer - but not explain.

I'm going to go back and read this thread from the beginning.  I'd like to find out what I need to look for in DD - to indicate her levels are too high or too low, etc.

Thanks for the thread - and all of the info that has been shared.


----------



## CindyLoPiano

Has anyone here done any bariatric surgery due to their weight gain from hypothyroidism? I am seriously considering it. I've been carrrying around these pounds too long, and I just can't stand being this overweight anymore. The thyroid has just "killed" my metabolism. I've done WW, Nutri, Slim-fast, too many diets to count. I walk all the time, a minimum of 1.75 miles, more often 2.5 miles at least 4-5 times a week. It's just so frustrating. Especially when I ballooned up so fast. A couple of years ago I ballooned up almost 35 lbs in one month! Lord, keep me strong!


----------



## uromac

Hi!

Just found this thread - through someone on the budget board when I posted an OT thread re: Thyroid Cancer.  as my sister just found out that she has Thyroid Cancer after having it removed - she has completed her medication and is now off that and has started special diet and then will go for radio-active iodine treatment. She has 2 kids 6ds & 2dd who have to physically stay away from her for at least a week. During this time, she has stay in her home as she is going to be radio-active  for a while so her kids are going to stay with my parents. It used to be that you stayed in a hospital during this treatment, but now you go home and deal with the consequences or making sure that others and the home remain relatively safe and radioactive-free. I know this is going to be difficult, so has anyone gone through this or know anyone that has? Any helpful hints on coping with this would be greatly appreciated! 

We still have WDW scheduled for Thanksgiving as a family so at least she has something to look forward to  !

Thanks!

Melissa


----------



## jennz

Hi Melissa -

When I had my radioactive iodine treatment I was in the hospital until my radioactivity came below a certain level and people had to stay x-paces away from me.  When I left I had to leave my toothbrush, underclothes, etc at the hospital.  At home I had to pour rat poison in the toilet after I went (each time) - they said it attracts the radiation or something from the toilet.  I didn't have dd at the time (it was 15 years ago) but they did tell me if I had a child neck/neck contact was prohibited.  So cradling her or something.  They were primarily concerned w/ kids b/c they're still growing.  Had to wash the sheets in hot water and not sleep w/dh for a few nights.

I don't remember a special diet...

It might be a bigger adjustment for her to get her meds at a good level...that was frustrating.  I remember being hypo and hyper in the following months, neither was a good feeling.


----------



## pakhowe

Hi all.  I started a thread about this but I am so glad I was pointed in this direction.  

Here's the short story...an ultrasound of my thyroid found a lump. I need to have it biopsied. I have an appointment but what can I expect at that visit. Will the Dr do the biopsy in his office?? Will it be a consult first then another visit?? Will this hurt, is it invasive? Has anyone had this done before?

The long story...I have been going through lots of testing for the past 4-5 years to explain my symptoms. I have been tired, depressed, forgetful, twitchy, have headaches every day and sometimes I don't speak right. I either forget the words, forget what I was going to say or just slur the words. It has been frustrating to say the least. About 3 years ago I went for an MRI and the neurologist said it may be MS. I have 'spots' on my scan. A year later I went for a follow up MRI and the same spots were still there, same size, etc. Recently I went to my primary care office for a checkup and saw a different PCP in the office. She read my MRI report and said the technition stated that the 'spots' were insignificant in size and that the neurologist I had gone to did not specialize in MS soooooo to rule out everything she sent me for more labs. My bloodwork has been coming back normal every time. I mentioned that my husband suggested having my thyroid checked. My bloodwork on that once again came back normal but she also sent me for an ultrasound. This is how they found the lump. The Dr said she is hopeful because there is a lump on both sides but 1 just isn't big enough to biopsy but she still wanted me to see a specialist ASAP. They wouldn't even let me make the appt.

I'm kinda scared and want to know what to expect from anyone who's been there.

Thanks


----------



## jennz

I had a needle biopsy done on my lump I had on my thyroid...they use a long thin needle and tell you it feels like a bee sting.  Honestly it wasn't bad and I'm a HUGE wimp!!  And yes he did it in his office.  Mine came back inconclusive and they watched it for 6 months to see if it would grow (it did) and then did a partial thyroidectomy, the frozen cell biopsy they did during the surgery came back benign but oops - wasn't accurate so I got to have another surgery a few days later after the other biopsy came back.

I remember feeling scared when I had it done, and thinking about walking around and looking "normal" when I might have cancer inside me.  I think it's worse not knowing, you have no plan and no direction.

Many of your symptoms sound like hypothyroid - forgetful, tired, depressed.  I was going to say the problems w/speech and "twitchy" sound like it to but I was mixing my symptoms - that's how I get when my calcium gets low, I stutter and get "twitches."  

I feel for you... how frustrating and scary to be going through this for 4 - 5 years and then hearing it might be MS...I hope these new tests give you an answer.


----------



## jrandtysmom

Hi Everyone! I am so glad I found this thread.  I went to the doctor a few weeks ago and they discovered that my thyroid is enlarged.  They've done bloodwork and a Cortisol Free Urine test and everything came back normal.  Then they sent me to have an ultrasound on my thyroid and it came back as having cysts on my thyroid so now my GP wants me to see an Endocrinologist but she had no answers about the cysts - if they are just fluid. The Endo Dr is now reviewing my file before I can make an appointment?  Is that normal?  I'm wishing they would just figure out what is wrong.


----------



## dougsmom98

pakhowe said:


> Hi all.  I started a thread about this but I am so glad I was pointed in this direction.
> 
> The long story...I have been going through lots of testing for the past 4-5 years to explain my symptoms. I have been tired, depressed, forgetful, twitchy, have headaches every day and sometimes I don't speak right. I either forget the words, forget what I was going to say or just slur the words. It has been frustrating to say the least.
> Thanks



Your symptoms are almost identacle to my symptoms!  I also had an MRI, but mine came back normal.  I thought for sure it was a brain tumor or MS.  After the MRI, they did the blood tests and found I have hyperthyroidism and likely Grave's eye disease since I am having eye problems.  It is odd that I am hyper since most of my symptoms are hypo (speech problems, forgetful...).  I had an ultrasound last week on the thyroid and I haven't heard, so I think it was normal.  I go for a radioactive iodine scan in two weeks and I am on an iodine free diet until then.   
Good luck with the biopsy.  I have heard it isn't too bad.  Let us know how it goes.


----------



## KAMLEM

For those of you who had your thyroid removed, were you able to lose weight once you got your medication straightened out? It has only been three months since I had mine removed and we haven't figured out the right dosage yet. I still feel horrible, I can't even keep my eyes open at work anymore. I go back for bloodwork next week. I'm just hoping that once we get it straight I'll be able to lose some weight. I really don't eat a lot either, I don't have much of an appetite.


----------



## jennz

ugh - I know when mine's been low I feel the same way you're talking about, plus it seemed like I hardly ate and gained weight!  I have struggled w/my weight since I've had it out.  My endo says it's not related.  For what it's worth.

Good luck with getting your dose right!!


----------



## pakhowe

dougsmom98 said:


> Your symptoms are almost identacle to my symptoms!  After the MRI, they did the blood tests and found I have hyperthyroidism and likely Grave's eye disease since I am having eye problems.  It is odd that I am hyper since most of my symptoms are hypo (speech problems, forgetful...).  I had an ultrasound last week on the thyroid and I haven't heard, so I think it was normal.  I go for a radioactive iodine scan in two weeks and I am on an iodine free diet until then.
> Good luck with the biopsy.  I have heard it isn't too bad.  Let us know how it goes.




I find it so strange that all my blood work keeps coming back normal.  I was sure it would show something.  I go in 2 weeks for my biopsy, Ill let you know how it goes.  Good luck with your scan.  Have you started any meds yet or waiting  until the scan is done?  I'd call your PCP about the ultrasound.  My PCP was upset I didn't call sooner, they hadn't forwarded her the report so I never got a call about the results (of course I was supposed to have an appt sooner but with it being summer and all, and of course my trip to WDW, my appt had to wait).

I will have to look up Graves Disease.  Good luck.

BTW, where in ME are you?


----------



## pakhowe

deleted


----------



## jennz

I think the blood work depends on what they order and who's looking at it.  Do they look at your TSH and T4 levels?


----------



## dougsmom98

pakhowe said:


> I find it so strange that all my blood work keeps coming back normal.  I was sure it would show something.  I go in 2 weeks for my biopsy, Ill let you know how it goes.  Good luck with your scan.  Have you started any meds yet or waiting  until the scan is done?  I'd call your PCP about the ultrasound.  My PCP was upset I didn't call sooner, they hadn't forwarded her the report so I never got a call about the results (of course I was supposed to have an appt sooner but with it being summer and all, and of course my trip to WDW, my appt had to wait).
> 
> I will have to look up Graves Disease.  Good luck.
> 
> BTW, where in ME are you?



I started methimazole this past Friday.  I am not sure if it is helping yet.  It feels good to be doing something though.  You'll be getting your biopsy around the same time that I am getting my thyroid scan.  We'll have to keep each other posted on the results.  

I live in the Bridgton, ME.  Where in Maine are you?


----------



## pakhowe

jennz said:


> I think the blood work depends on what they order and who's looking at it.  Do they look at your TSH and T4 levels?



I'm not sure what they are looking at when they do the blood tests.  I just know they tell me they are checking my thyroid levels??? 


Dougsmom98, I live in Southern Maine...York area.  Good luck next week.  I'll post again after my Dr appt.


----------



## frdeb1999

My husband is going on the 1 yr mark next month since having his thyroid removed and still isn't feeling 100% yet. They keep slowly upping his meds and he does great for about a month after and then it seems to level out again and he's right back in the same boat. His endo told him though it would be between 18-24 months before he started totally feeling like himself again. He's improving steadily, just gets him upset that it's not as fast as he'd like it to be. And the weight thing....he eats less now then he did prior to surgery and still manages to gain. I really feel bad for him....endo says same thing....not related....but I just don't agree. Hopefully all will level out soon. Just am thankfully that his first round of scans came back clear....next ones are in Dec..Hopefully it will continue same course!


----------



## KAMLEM

It's very frustrating that it can take so long to get the meds right. My dr. upped mine and I went for bloodwork last week and my TSH is at 26.83. I guess that explains why I still feel so horrible. She doesn't want to up it too quickly because too much at once gives me palpitations, I can't sleep and I have awful anxiety. 

frdeb1999-Hopefully your husband will feel better soon. I just had my thyroid removed 4 months ago so I think I have quite a ways to go.


----------



## frdeb1999

Thank you KAMLEM. And hopefully yours will slowly improve too. It's a tough road at times. Just don't be too hard on yourself and take things slowly. I keep telling my husband that. But he gets really upset when he forgets things or has bad days. And I always remind him that it will improve and just to take it one day at a time.


----------



## teacups

Just my own experience:  I had Graves when I was 13 years old.  Took the meds (PTU) for it until I was 19 and felt good.  For some reason a doc wanted to do RAI to burn it out and I did it.  Young and stupid?  I think so.  Now, I'm 40+ and would NEVER do that again!!!  I was fine for several years and then all went haywire.  Meds dont work right, test dont work right, I certainly have not felt right in years.  Id NEVER do the RAI if given the chance to go back.
In my experience doctors understand Graves fine, until they screw things up. Then Graves becomes a thing they dont understand.  I feel cheated that they didnt paint the whole picture for me.
My advice is simple:  Research EVERYTHING before you do it.
Know your options and which sounds right TO YOU.
Know what tests mean and how to read them, and get copies of yours. 
Do not accept "everything is in the normal range" until you see it. 
It is your body after all... you will have to live with this (whatever you do)  forever.
Good luck to all.
Remember... I give this advice without standing to make a dime off it.
Can the doc say the same thing?


----------



## rie'smom

When you go to your doctor, please make sure if they're doing bloodwork, that they are doing a TOTAL T3 and T4. The regular thyroid blood test is not as accurate. 

Also, if your Synthroid is not working for you, ask your doctor or find one who will prescribe Armour thyroid. Armour is made from the thyroid glands of animals. It was a miracle for me. I'd taken Synthroid and felt just as bad after taking it as I did before I took it. 

I found a different doctor, he prescribed Armour thyroid and my life changed for the better. Most doctors say that the dose isn't as good or isn't as accurate as Synthroid but I'm here to say that every single person that I've asked has said the Armour changed their lives for the better too.


----------



## jennz

I used to take Synthroid and changed to Levoxyl and noticed a difference, they were also actually able to cut my does in half!  You're not getting generic are you?

Kamlem - did you mean your TSH levels were that high?  (you typed TSG)  Yikes!  Are you sleeping 18 hours/day? 

frdeb1999 - I'd be frustrated still feeling like that after a year too.  Do you like the endo he has?  Congrats on the clear scan!  I always get nervous before mine.  Is he taking his meds on an empty stomach an hour before eating and NOT taking generics?  

The weight thing stinks - that's all I can say about it.  I am sure some of it w/me is age but I really don't believe that's the biggest part (no pun intended!) when I hear the same thing from so many w/the same thryoid issues.  It comes on easy, and is much harder to get rid of.  Some of the things say they "increase your metabilism" always make me think "but my metabilism comes from my little pink pills..." I don't know how it can be increased but I DO know that a cold knocks me out longer than most people, and I think that's b/c my body uses some of the "stored" stuff to help while I'm sick and then has to "rebuild" after. I don't know if this makes sense...


----------



## rie'smom

jennz said:


> I used to take Synthroid and changed to Levoxyl and noticed a difference, they were also actually able to cut my does in half!  You're not getting generic are you?
> 
> 
> 
> No, Armour is the thyroid medication that was prescribed for 100 years before they started the synthetic thyroid medications. It's made from the glands of USDA-approved grain-fed pigs. The thyroids are processed, dried, powdered, and compounded to produce Armour Thyroid tablets. Since the amount of thyroid hormone present in the thyroid gland may vary from animal to animal, the T4 and T3 are measured in both the raw material and in the actual tablets. This ensures that Armour Thyroid tablets are the same from tablet to tablet.
> Armour contains both T3 and T4 which the synthetics don't have.
Click to expand...


----------



## jennz

rie'smom said:


> jennz said:
> 
> 
> 
> I used to take Synthroid and changed to Levoxyl and noticed a difference, they were also actually able to cut my does in half!  You're not getting generic are you?
> 
> 
> 
> No, Armour is the thyroid medication that was prescribed for 100 years before they started the synthetic thyroid medications. It's made from the glands of USDA-approved grain-fed pigs. The thyroids are processed, dried, powdered, and compounded to produce Armour Thyroid tablets. Since the amount of thyroid hormone present in the thyroid gland may vary from animal to animal, the T4 and T3 are measured in both the raw material and in the actual tablets. This ensures that Armour Thyroid tablets are the same from tablet to tablet.
> Armour contains both T3 and T4 which the synthetics don't have.
> 
> 
> 
> 
> Sorry, I wasn't clear - I was asking frdeb1999 & kamlem.
> 
> Click to expand...
Click to expand...


----------



## rie'smom

jennz said:


> rie'smom said:
> 
> 
> 
> 
> 
> jennz said:
> 
> 
> 
> I used to take Synthroid and changed to Levoxyl and noticed a difference, they were also actually able to cut my does in half!  You're not getting generic are you?
> 
> 
> Sorry, I wasn't clear - I was asking frdeb1999 & kamlem.
> 
> 
> 
> 
> sorry
> 
> Click to expand...
Click to expand...


----------



## jennz

No worries!   Just curious - what did you notice different when you switched to the Armour?


----------



## rie'smom

I had energy. Before starting on the Armour, it took all my energy just to make it to 6pm when I would fall into bed. It was like being a zombie. My skin was dry, my hair breaking,my face puffy,all of the same symptoms and my doctor wouldn't listen. 
When I finally found the right doctor, he gave me a checklist, he did a reflex test, and I was still hypothyroid. You know how doctors used to ping your knee and ankle? That was a test for thyroid function. Anyway, I feel like I have my life back and it's wonderful!


----------



## frdeb1999

Hi Jennz...yes we really like his Endo. We have heard so many horror stories about those who have one's that they don't like. So we were thankful to find out that we do. He's doing everything by the book and no he's not taking generics. Hopefully all will settle down soon!!


----------



## KAMLEM

jennz said:


> Kamlem - did you mean your TSH levels were that high? (you typed TSG) Yikes! Are you sleeping 18 hours/day?


Yes, I meant TSH, I fixed it. I feel like sleeping 18 hours/day, but it's not possible! By 10:00 a.m. I'm having trouble keeping my eyes open at work. At lunch I go out to my car and nap. I'm in bed by 7:30, although not necessarily asleep. I look forward to Sundays because most weeks I don't have anything planned. It's sort of my catch up day. I actually get angry if something comes up on a Sunday!

To make things worse, last Sunday I had to take my mother to the airport and when I was in the parking garage I fell and sprained my ankle. Just one more thing. Crutches are very hard to use when your body is so weak!

I feel like I'm not living my life right now, I'm just trying to get through each day. Hopefully the meds will kick in soon.


----------



## jham

Hi, I just started lurking here last week when I realized my DD11 had an enlarged thyroid.  I took her to the Dr. on Friday and just got lab results this morning.  I don't have numbers, but they said her TSH is very, very low, T4 is elevated, T3 uptake is elevated, Free thyroxin is elevated, something about thyroid peroxidase and something else I didn't catch.  She is hyperthyroid and I am waiting for the pediatrician to confer with the endochronologist and call me back.  I just don't even know what all this means and I'm so scared for my baby girl.  I'm glad this thread is out there.  Thanks for listening.


----------



## pakhowe

I'm going this Friday to the Dr about the nodule on my thyroid.  I was told he would do a biopsy but I was referred to an ear/nose/throat Dr.  Should I be going to see an endo?  

Thanks for all the great information in this thread.  I now know I should ask for specific blood work to be done.

Are there any other things I should be asking about or having checked?


----------



## KAMLEM

pakhowe said:


> I'm going this Friday to the Dr about the nodule on my thyroid. I was told he would do a biopsy but I was referred to an ear/nose/throat Dr. Should I be going to see an endo?


I would definitely go to an endocrinologist, one that specializes in thyroids if possible. The thyroid is such a complicated thing, the ENT may not be familiar enough with all the issues.

My endocrinologist didn't do my biopsies, though. It was actually a different dr. in the hospital that did them (sorry, not sure what type of dr. that is).

Be prepared that the biopsy may not tell you anything.  I had 2 and in the end I had to have surgery because they could not get enough information from the biopsies alone.

Good luck, if you have any questions feel free to PM me.


----------



## rie'smom

pakhowe said:


> I'm going this Friday to the Dr about the nodule on my thyroid.  I was told he would do a biopsy but I was referred to an ear/nose/throat Dr.  Should I be going to see an endo?
> 
> Thanks for all the great information in this thread.  I now know I should ask for specific blood work to be done.
> 
> Are there any other things I should be asking about or having checked?





KAMLEM said:


> I would definitely go to an endocrinologist, one that specializes in thyroids if possible. The thyroid is such a complicated thing, the ENT may not be familiar enough with all the issues.
> 
> My endocrinologist didn't do my biopsies, though. It was actually a different dr. in the hospital that did them (sorry, not sure what type of dr. that is).
> 
> Be prepared that the biopsy may not tell you anything.  I had 2 and in the end I had to have surgery because they could not get enough information from the biopsies alone.
> 
> Good luck, if you have any questions feel free to PM me.



Definitely either see an endocrinologist or an internist who specializes in thyroid issues. I would not see an ENT for thyroid problems.


----------



## DisneyMissy318

Hi everyone...

I wanted to come back and post an update on DD (10) - she had her thyroid removed in early August due to the fact it was growing on the back of her tongue... they left a little piece in place - just so she would have some of the original gland.

We had a follow-up appointment a week after surgery and 75mg of Synthroid was prescribed - we DID get the generic (from what I'm reading - we probably shouldn't??)

Fast forward 7 weeks - blood test shows a TSH level of 118!!!!!!!!!  DD GAINED 22 pounds since surgery!!!!  I'm freaking out!  I don't know what to do!!  They upped the mg to 112 - with another blood test in 6 weeks.  DD was home sick this week Tuesday and Wednesday with the worst stomach cramps - she was flushed and warm to the touch - but no fever.

From what I've read online and from what you guys have shared - it will be a long process to get her to a "normal" level.

We have a follow-up with the ENT surgeons next Tuesday.  I think she needs to be referred to an Endocrinologist for her follow-up care (as opposed to our GP) - do you guys agree?

Any advice on what to do from here - as well as what to do FOR HER would be great!  I didn't tell her she was having a reaction to her meds - maybe I should - this is my BABY - and I hate to see her suffer!  Uuuggghhh!


----------



## rie'smom

DisneyMissy318 said:


> Hi everyone...
> 
> I wanted to come back and post an update on DD (10) - she had her thyroid removed in early August due to the fact it was growing on the back of her tongue... they left a little piece in place - just so she would have some of the original gland.
> 
> We had a follow-up appointment a week after surgery and 75mg of Synthroid was prescribed - we DID get the generic (from what I'm reading - we probably shouldn't??)
> 
> Fast forward 7 weeks - blood test shows a TSH level of 118!!!!!!!!!  DD GAINED 22 pounds since surgery!!!!  I'm freaking out!  I don't know what to do!!  They upped the mg to 112 - with another blood test in 6 weeks.  DD was home sick this week Tuesday and Wednesday with the worst stomach cramps - she was flushed and warm to the touch - but no fever.
> 
> From what I've read online and from what you guys have shared - it will be a long process to get her to a "normal" level.
> 
> We have a follow-up with the ENT surgeons next Tuesday.  I think she needs to be referred to an Endocrinologist for her follow-up care (as opposed to our GP) - do you guys agree?
> 
> Any advice on what to do from here - as well as what to do FOR HER would be great!  I didn't tell her she was having a reaction to her meds - maybe I should - this is my BABY - and I hate to see her suffer!  Uuuggghhh!



Get her to an endocrinologist! I hate GPs for dealing with the thyroid. Why did and ENT do the surgery???  That, to me, would be like going to an endocrinologist for sinus problems. Please stay away from your GP. Thet almost always order the wrong thyroid blood tests!
Good luck to you and your daughter!!! Keep us posted.


----------



## DisneyMissy318

rie'smom said:


> Why did and ENT do the surgery???



After reading your reply - I'm here in tears that I didn't do everything possible for my DD!  Our town ENT discovered the thyroid growing on her tongue and referred us over to UVA (University of VA) to the director of the ENT program.  Up until all of this - I didn't even know there was such a Dr. as an Endocrinologist!  

I DO know that MANY doctors from around the country were consulted as what DD presented is a rare condition.  Their course of treatment changed based on input from other Drs. who had done the surgery prior.  

Based on how "excited" the ENT was I would say they didn't refer us due to the fact that they wanted to publish the surgery.  I guess the good thing is that UVA also has an incredible Endocrinology Department and WE WILL be making an appointment there ASAP!


----------



## rie'smom

DisneyMissy318 said:


> After reading your reply - I'm here in tears that I didn't do everything possible for my DD!  Our town ENT discovered the thyroid growing on her tongue and referred us over to UVA (University of VA) to the director of the ENT program.  Up until all of this - I didn't even know there was such a Dr. as an Endocrinologist!
> 
> I DO know that MANY doctors from around the country were consulted as what DD presented is a rare condition.  Their course of treatment changed based on input from other Drs. who had done the surgery prior.
> 
> Based on how "excited" the ENT was I would say they didn't refer us due to the fact that they wanted to publish the surgery.  I guess the good thing is that UVA also has an incredible Endocrinology Department and WE WILL be making an appointment there ASAP!



 OMG, I am so sorry. I didn't mean you did anything wrong!!!!!  It just makes me angry that doctors don't do referrals to experts!!!!


----------



## DisneyMissy318

Please... it's not you... I'm just upset with myself for not even asking the question.  DD has a needle-phobia as well - which I hope she will soon grow out of - since this will be a regular thing for her life!  I will be asserting myself next week - because I'm sure the ENT will want to do another blood test, but we just had one last week.  I'm going to get a copy of the bloodwork and take it with me.  It's just beyond time for me to accept what I'm being told by the Drs. as gospel!

Thanks for the hugs and advice!!  TRULY APPRECIATED!!!


----------



## rie'smom

DisneyMissy318 said:


> Please... it's not you... I'm just upset with myself for not even asking the question.  DD has a needle-phobia as well - which I hope she will soon grow out of - since this will be a regular thing for her life!  I will be asserting myself next week - because I'm sure the ENT will want to do another blood test, but we just had one last week.  I'm going to get a copy of the bloodwork and take it with me.  It's just beyond time for me to accept what I'm being told by the Drs. as gospel!
> 
> Thanks for the hugs and advice!!  TRULY APPRECIATED!!!



Ask him to do a Total T3 and T4. It's the most accurate for testing thyroid levels.


----------



## jennz

DisneyMissy318 said:


> Please... it's not you... I'm just upset with myself for not even asking the question.  DD has a needle-phobia as well - which I hope she will soon grow out of - since this will be a regular thing for her life!  I will be asserting myself next week - because I'm sure the ENT will want to do another blood test, but we just had one last week.  I'm going to get a copy of the bloodwork and take it with me.  It's just beyond time for me to accept what I'm being told by the Drs. as gospel!
> 
> Thanks for the hugs and advice!!  TRULY APPRECIATED!!!



I just want to give a different perspective...I think an endo is definitely needed for ongoing treatment, my gp won't treat me for my thyroid, and he's the one who discovered the growth.  (I'm fortunate that he sent me on.)  DH works for and ENT group and they don't treat patients w/thyroid conditions but they do a lot of thyroidectomies.  None of my endos have been surgeons.  I had my surgeries done by a general surgeon.  He was great and I liked him but I do still wonder if I had an ENT, who specializes in surgeries in that area, do them, if my parathyroids would still work and I wouldn't be spending hundreds on calcium replacement medication each month and would be able to throw up w/o having to go to the hospital.  Knowing what I know now I would definitley have had an ENT do the surgery.  I had an endo, oncologist, and surgeon.  Now I'm down to just my endo.

Rie'smom - the Armour must have been like a miracle drug for you!  I'm glad you found it!  (as I KNOW you are  )

Kamlem - I feel for you!  That is horrible.  After 3 months I would think you'd be closer to "normal."  What's your dose and what are you taking?


----------



## jennz

DisneyMissy318 said:


> Hi everyone...
> 
> I wanted to come back and post an update on DD (10) - she had her thyroid removed in early August due to the fact it was growing on the back of her tongue... they left a little piece in place - just so she would have some of the original gland.
> 
> We had a follow-up appointment a week after surgery and 75mg of Synthroid was prescribed - we DID get the generic (from what I'm reading - we probably shouldn't??)
> 
> Fast forward 7 weeks - blood test shows a TSH level of 118!!!!!!!!!  DD GAINED 22 pounds since surgery!!!!  I'm freaking out!  I don't know what to do!!  They upped the mg to 112 - with another blood test in 6 weeks.  DD was home sick this week Tuesday and Wednesday with the worst stomach cramps - she was flushed and warm to the touch - but no fever.
> 
> From what I've read online and from what you guys have shared - it will be a long process to get her to a "normal" level.
> 
> We have a follow-up with the ENT surgeons next Tuesday.  I think she needs to be referred to an Endocrinologist for her follow-up care (as opposed to our GP) - do you guys agree?
> 
> Any advice on what to do from here - as well as what to do FOR HER would be great!  I didn't tell her she was having a reaction to her meds - maybe I should - this is my BABY - and I hate to see her suffer!  Uuuggghhh!



That's a pretty big jump in the level of synthroid...my endo has always said they don't want to go up to quick.  But I don't know if that's just them or if it's standard, so I guess it's not much help.  

I would say ditch the generic...although they are supposed to be in a certain "range" I have been told that range is too large for something like your thyroid, a small change can be huge.  Make sure she takes it on an empty stomach too.

The TSH is HIGH as in no thryoid function!  I would guess they were hoping that the piece of thyroid they left in would function and the meds would only be needed to supplement it - a better option if it works.

Unfortunately you do have to wait about 4 - 6 weeks to adjust to a new dose of the meds, I don't know if they explained it to you but the way it's been explained to me is your body stores it, so when you're very low it gives you a little and stores a lot and so on until the "store" is complete and then you get all of it.  With your dd being 11 please get her to an endo!  Just tell your ENT that you'd feel more comfortable with a specialist due to the complexity of the thyroid function and the metabolism and the fact that your daughter still has a lot of growing to do!  Is what's normal for adults a normal level for kids?  I know they can eat a horse and not gain weight and I sure can't!    You probably want them to call an endo and get you in asap, no need to wait for the next blood draw.  (FWIW, I have an appt in November and I just called to reschedule and they told me I'd have to wait until March - that's why I said you probably want them to call and get you in.)

Good luck to you guys!  Post away here, this is such an odd disease in that it touches you in so many different ways and most people don't understand it, and most who do say "well you just take a pill and it's better right?" 

Sorry for my rambling post but I hope there's something in here you can use.


----------



## KAMLEM

jennz said:


> Kamlem - I feel for you! That is horrible. After 3 months I would think you'd be closer to "normal." What's your dose and what are you taking?


After having my thyroid removed, my endo started me on 112 mcg. I started feeling shaky, unable to sleep, anxiety attacks, so she reduced it to 100 mcg. She said that in the end I will probably need even more than the 112 mcg, but sometimes you need to work up to it very gradually. Since getting my bloodwork results last week, I am on 112 mcg 4 days/week and 100 mcg 3 days/week. I have a feeling that this won't be enough, but I don't want to increase it too quickly. I would much rather deal with the symptoms of being hypo than hyper. The anxiety was almost more than I could deal with.


----------



## pakhowe

dougsmom98 said:


> I started methimazole this past Friday.  I am not sure if it is helping yet.  It feels good to be doing something though.  You'll be getting your biopsy around the same time that I am getting my thyroid scan.  We'll have to keep each other posted on the results.
> 
> I live in the Bridgton, ME.  Where in Maine are you?



I know what you mean about feeling good to do something.  I'd love to have some answers, any answers.  Did you hear about your ultrasound?  How did the scan go today?  Hope all was well.  I couldn't  have my biopsy done today, I have to go to the hospital on Tuesday.  I'll post again after I hear anything.


----------



## dougsmom98

pakhowe said:


> I know what you mean about feeling good to do something.  I'd love to have some answers, any answers.  Did you hear about your ultrasound?  How did the scan go today?  Hope all was well.  I couldn't  have my biopsy done today, I have to go to the hospital on Tuesday.  I'll post again after I hear anything.



I went for the thyroid uptake count and a thyroid scan yesterday.  I have not heard the results yet.  I had to be on an iodine free diet for two weeks prior to the scan.  That was a lot harder than I thought.  No dairy, no processed food, no bread unless you make it yourself, no eggs...  I never realized how many foods were made with eggs, milk, butter...  Five days before the scan, I had to go off the methimazole which the endo gave me for the hyperthyroidism.  I didn't think it was helping at all until I went off it because my right eye has been swollen for the last four days.  I am glad to start it back up and see if it makes a difference.  

Good luck on Tuesday!


----------



## jennz

KAMLEM said:


> After having my thyroid removed, my endo started me on 112 mcg. I started feeling shaky, unable to sleep, anxiety attacks, so she reduced it to 100 mcg. She said that in the end I will probably need even more than the 112 mcg, but sometimes you need to work up to it very gradually. Since getting my bloodwork results last week, I am on 112 mcg 4 days/week and 100 mcg 3 days/week. I have a feeling that this won't be enough, but I don't want to increase it too quickly. I would much rather deal with the symptoms of being hypo than hyper. The anxiety was almost more than I could deal with.



I've been hyper too during the initial adjustments and it's a scary feeling - I know what you mean!  I take .224 mcg of levoxyl/day - just for your reference.  I was taking somewhere around .4 of synthroid, but for some reason switching to levoxyl lowered what I needed.  The dr. said sometimes that happens.


----------



## kathleena

Hi Everyone - some interesting conversations here, thought I would jump in with a couple of comments and observations.

First about me:  I have Graves Disease, diagnosed in 2004 after 10 years of doctor hopping and complaining that I thought I had a thyroid problem and being told it was perimenopause.  FInally went a bit hypo in 2002 and started synthroid.  Then seriously hyper in 2004.  Treated with anti-thyroid drugs, in remission for 3 years.  I also go a bit hypo, so currently taking .5/.75 alternating days.  I do use the generic and don't have any issues.  Because the antibodies I have are TSI, I do have eye involvement, particularly the left which bulges a little.

So here are some comments on some of these topics.  Some opinions/statements vary from people to people, I rarely find a thyroid group where everyone agrees on everything.  So I will just say this first - we are all different, managing different bodies.  What is good for one, may not be good for another.  The important thing is to consider alternatives and recognize facts vs opinions.

- Symptoms lag behind the numbers, sometimes up to 6 weeks.  Your body is adjusting all the time to new thyroid hormone levels in your blood.  During treatment, my numbers were normal long before my symptoms were gone, especially things like heart palpitations.  So don't expect changes in the drugs to work fast like an antibiotic or pain killer.

- If you have eye involvement - it's very important for you to know what type(s) of antibodies you have.  TSI is the worst and it can cause major issues with your eyes, especially if you get the RAI.  Get yourself to an opthamologist that specializes in Thyroid Opthamology (Thyroid Eye Disease).  I have one and he is great.  My endo didn't refer me - I was told that they don't refer unless the eye is bulging more than 18(something).  So I had my PCP refer me.  Having the eye doc was like completing a circle.  The endo cares that you thyroid is normalized, the eye doc cares for your eyes and your PCP for your overall health and ongoing blood work.

- Endos don't typically follow with T4 treatment after surgery or RAI.  I know this sounds bizarre, but once the thyroid is gone, then some consider their job is done and now it's up to the PCP to normalize the blood levels.

- For the young girl - this is just so unnecessary to put her thru this has your doc ever managed a child without a thyroid?  You haven't said you have a pediatrican, if you do not, perhaps that is where you need to go.  They have pediatric Endos also.  Geez, I'm on .5/.75 and I'm a 55 year old woman with a thyroid.  Kids metabolisms are so much faster, you would think they would know to start her off higher than that.  Many hugs to you and DD.  I'm sure it's very scarey.  Things will get better.

- Weight gain is normal with the thyroid treatments, they say that 10-15lbs is attributed to thyroid problems.  Going higher than that is generally over-eating/under exercising.  My endos NP explained to me that because I had thyroid issues going slightly hyper/hypo for so many years, my body was in an unnatural state for weight.  The balance for intake/exercise was way off.  So being treated to normalize the thyroid now put me in a more natural state and I needed to find the correct intake/exercise balance again.  Makes sense to me.  And of course, menopause doesnt help!  So I did finally realize that I just can't eat what I used to, and needed to up my exercise.  My body is starting to balance, but it has taken a while.

- The significant thyroid measurements are TSH, Free T4 and Free T3 - not Total T4 and T3.  I only have TSH drawn now, as I don't need to know the T3 and T4.  Before I was diagnosed, TSH was somewhere between 2.5 and 4.0 and Free T4 (when the doc would agreed to get it - grrrrr) was low.  If the scale was .8-1.8, then I would be at .8.  I feel much better at about 1.1-1.2 and getting higher than that, I start to feel hyper.  My endo's NP told me that some people have very small "set points" and mine seems to be just that.  So even tho you are in the "normal" range - know your set point.  Free T3 is a very expensive test that I think is just not necessary unless the doc suspects you have a T4-T3 conversion issue.  So my advice is ask the doc if they think you need the test.  Right now, my wonderful PCP is treating me because without the .5/.75, TSH would be well over 3.0 and FT4 would be .8 or lower.

continued in the next post, just in case I run out of space here.


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## kathleena

OK, moving on just a couple more comments and then I'm caught up with all the topics here.

- Our need for T4 changes with our health, age and activity.  As we age, we need less.  Managing a thyroid issue is constant, although many people are normalized at a certain dose for years.  Then things change and they have issues and need to be re-normalized.  I had surgery at the end of March and went hyper right after due to overmedication.  I was housebound for about 6 weeks and took about 200 steps a day around my house.  My needs for food and T4 went right in the tank.  I was hyper by May 9th.   Now that I'm more active and am losing the weight gained while inactive, I'm getting back to my regular dose.

- Armour thyroid is controversial, and like all drugs, is not for everyone.  Including T3 with T4 in a normal dose is still considered experimental therapy.  My endo will not prescribe Armour, nor will my PCP.  You can have T3 added to synthetic T4 with the drug Cytomel if your doc agrees that your FT3 levels warrent it.  I would recommend Armour only if you have been following your FT4 and FT3 levels and have evidence that you have a T4/T3 conversion problem.  I don't need T3 and would surely feel hyper if I had it in my meds.


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## KAMLEM

kathleena said:


> - Endos don't typically follow with T4 treatment after surgery or RAI. I know this sounds bizarre, but once the thyroid is gone, then some consider their job is done and now it's up to the PCP to normalize the blood levels.


That's definitely not what I have seen from my experience. My endo said that she will be the one to work with me to get my meds straight and monitor me after that. I just met 2 people at work who have had their thyroids removed and they said that their endo is still their primary contact.


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## rie'smom

kathleena said:


> OK, moving on just a couple more comments and then I'm caught up with all the topics here.
> 
> - Our need for T4 changes with our health, age and activity.  As we age, we need less.  Managing a thyroid issue is constant, although many people are normalized at a certain dose for years.  Then things change and they have issues and need to be re-normalized.  I had surgery at the end of March and went hyper right after due to overmedication.  I was housebound for about 6 weeks and took about 200 steps a day around my house.  My needs for food and T4 went right in the tank.  I was hyper by May 9th.   Now that I'm more active and am losing the weight gained while inactive, I'm getting back to my regular dose.
> 
> - Armour thyroid is controversial, and like all drugs, is not for everyone.  Including T3 with T4 in a normal dose is still considered experimental therapy.  My endo will not prescribe Armour, nor will my PCP.  You can have T3 added to synthetic T4 with the drug Cytomel if your doc agrees that your FT3 levels warrent it.  I would recommend Armour only if you have been following your FT4 and FT3 levels and have evidence that you have a T4/T3 conversion problem.  I don't need T3 and would surely feel hyper if I had it in my meds.



Armour thyroid is controversial because a prescription is about $10. I don't know of 1 single person on Armour, and I've talked to dozens at my doctor's office, that haven't felt 100% better on Armour thyroid meds. 

_Are there other components of the natural thyroid that also result in a better outcome 6-For those who still respond poorly, what other problems are being missed?_

**Mistakenly, doctors are taught that the TSH test does this*. Over the last fifteen years, experience has shown that interpretation of this test has resulted in the vast majority of hypothyroid patients being under treated or not treated at all. As an example, the normal range was once again changed last autumn, reflecting that our interpretation of this test had resulted in another 13 million Americans not getting the thyroid treatment they needed. And this is just the ''tip of the iceberg."

The total The total T4 test has been used for many years to help diagnose hyper- and hypothyroidism. The free T4 is a newer test and some feel that it's good as a check but they're not as comfortable with it.

My internist specializes in thyroid issues and an endocrinologist that I saw recommended him. I would NEVER see a PCP physician except for a cold or something relatively minor.


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## jennz

Same here about seeing the endo...we're on our 3rd state since my thyroid's been removed and each time the pcp says nope - you have to go to an endo.  Too many variables for the pcps I've had to feel comfortable managing it.


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## DisneyMissy318

Good Morning everyone...

I had an appointment with my PCP this morning (who is also Madi's PCP)... we talked more about DD than me.  She is scheduling us an appointment with a pediatric Endocrinologist over at UVA - so a BIG THANK YOU to my DisFriends for that!!  She also wrote a standing order for DD's bloodwork to be done at the Treatment Center at the hospital - she ordered - TSH, T3, T4 & T-uptake.  By doing the bloodwork at the hospital - also allows us to skip the co-pay for a Dr. visit and only pay for the labwork.  AND, Madison had a pretty non-eventful draw there (she's usually hysterical  - she would get sweats, eyes dialate, scream, etc. etc... it has been absolutely horrible!  But the Treatment Center nurses were AWESOME!)

We see her pediatric ENT tomorrow - I'm guessing its a "cut us loose" visit... we are about 12 weeks post surgery.  I got a copy of her bloodwork to take with us - I'm going to decline any bloodwork they want to do there (as she just had it done.)

That's where we are now - TSH at 118 - she's been taking the 112mg for 1 week (prior dosage 75mg).

I appreciate all of the information being shared - I actually sound somewhat intelligent when speaking to my Dr. earlier today!

Thanks for all of the answered questions as well!   

I'll be reading your responses - and will post when we have "new" news!


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## rie'smom

DisneyMissy318 said:


> Good Morning everyone...
> 
> I had an appointment with my PCP this morning (who is also Madi's PCP)... we talked more about DD than me.  She is scheduling us an appointment with a pediatric Endocrinologist over at UVA - so a BIG THANK YOU to my DisFriends for that!!  She also wrote a standing order for DD's bloodwork to be done at the Treatment Center at the hospital - she ordered - TSH, T3, T4 & T-uptake.  By doing the bloodwork at the hospital - also allows us to skip the co-pay for a Dr. visit and only pay for the labwork.  AND, Madison had a pretty non-eventful draw there (she's usually hysterical  - she would get sweats, eyes dialate, scream, etc. etc... it has been absolutely horrible!  But the Treatment Center nurses were AWESOME!)
> 
> We see her pediatric ENT tomorrow - I'm guessing its a "cut us loose" visit... we are about 12 weeks post surgery.  I got a copy of her bloodwork to take with us - I'm going to decline any bloodwork they want to do there (as she just had it done.)
> 
> That's where we are now - TSH at 118 - she's been taking the 112mg for 1 week (prior dosage 75mg).
> 
> I appreciate all of the information being shared - I actually sound somewhat intelligent when speaking to my Dr. earlier today!
> 
> Thanks for all of the answered questions as well!
> 
> I'll be reading your responses - and will post when we have "new" news!



Looks like you have everything under control! Isn't that a great feeling?


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## kathleena

KAMLEM said:


> That's definitely not what I have seen from my experience. My endo said that she will be the one to work with me to get my meds straight and monitor me after that. I just met 2 people at work who have had their thyroids removed and they said that their endo is still their primary contact.



Yes, that's why I said some endos.  My friend had RAI and the endo sent her to her PCP for normalizing the thyroid, and I know of others.



rie'smom said:


> Armour thyroid is controversial because a prescription is about $10. I don't know of 1 single person on Armour, and I've talked to dozens at my doctor's office, that haven't felt 100% better on Armour thyroid meds.
> 
> _Are there other components of the natural thyroid that also result in a better outcome 6-For those who still respond poorly, what other problems are being missed?_
> 
> **Mistakenly, doctors are taught that the TSH test does this*. Over the last fifteen years, experience has shown that interpretation of this test has resulted in the vast majority of hypothyroid patients being under treated or not treated at all. As an example, the normal range was once again changed last autumn, reflecting that our interpretation of this test had resulted in another 13 million Americans not getting the thyroid treatment they needed. And this is just the ''tip of the iceberg."
> 
> The total The total T4 test has been used for many years to help diagnose hyper- and hypothyroidism. The free T4 is a newer test and some feel that it's good as a check but they're not as comfortable with it.
> 
> My internist specializes in thyroid issues and an endocrinologist that I saw recommended him. I would NEVER see a PCP physician except for a cold or something relatively minor.



My endo said the most controversy about Armour was because people don't usually need the T3, and I dont know anyone on it either.

He also only tests Free T4, but then just TSH because TSH is the more sensitive test.

And my PCP's office says any TSH over 3.0 should be treated with some T4 and has made the statement to me - the endos want us to keep the TSH below 3.0.  Used to be 5.0 a few years ago - back when I was over 4.0 and complaining that I thought I had a thyroid problem!  Guess I could have told them! 

And a PCP just means Primary Care Physician.  It could be an Internist or a Family Practice.  But I do agree with you 100%, for anything beyond the normal family stuff - once you get into things like thyroid etc - your PCP should be an Internal Medicine doc NOT a Family Practice doc.



DisneyMissy318 said:


> She is scheduling us an appointment with a pediatric Endocrinologist over at UVA
> 
> That's where we are now - TSH at 118 - she's been taking the 112mg for 1 week (prior dosage 75mg).



Awesome, that is where you belong!

That TSH is really high.  I don't know about hypo treatment with T4, but I do know with hyper treatment with anti-thyroid drugs it took a long time for my TSH to adjust up from <.01% to <.02% - about two months and about five months to get to 1.5%.

Hugs to you and to everyone suffering from thyroid instability.  I've been both ways and hyper is way more scarey, but both ways really stink.


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## angelat

I was diagnosed in July of this year with Hypothyrodism. Though my TSH wasnt that high, my Endo put me on levothyroxine because of my symptoms. After reviewing 5 years worth of my blood tests, she noticed that Ive been up and down for the past 3-4 years and before that I was borderline hypo. I cant tell you how many doctors Ive been to. My GP has sent me to a few neurologist over the years because she thought I may have MS (my sister has it). I had major tremor which got worse this year, to the point where I was dropping things and couldnt hold drinks with one hand. I had major brain fog and I was at the point where I would cry because I would be in the middle of a sentence and forget what I was saying. Finally my periods were all out of whack and I was getting hot flashes and night sweats. I made the appointment with the Endo because I thought I was going through early menopause. Im only 32, but my mom was finished when she was 36 and my grandmother by 40. so it wasnt unheard of. The endo ran all of the tests, then took me off BCP and had me retest and sure enough my TSH was a little over 6. I know that doesnt seem like a lot compared to what Ive seen others say theirs were, but it obviously was causing a problem for me. 2 weeks after going on the levothyroxine my tremor was completely gone. My nails actually started growing again and I felt better with a little more energy. But then it was all too clear that it wasnt going to last. While the tremor is still gone, my nails have gone back to the brittle mess they were, my skin peels and cracks and Im so tired ALL of the time. Ive also had pain and cramps in my legs, arms and back. I thought that was the medicine, but my Endo says that is the thyroid. 

After my blood work a couple of weeks ago, I got a call from the other doctor in her office. This man simply told me my blood work was fine. When I told him what I was experiencing he told me that my TSH wasnt that high to begin with, he wouldnt have put me on meds and that it has nothing to do with my thyroid. I have to go back to MY Endo in May from what I understand. If I am feeling worse before then I know I should call her, but I just feel like Im not sure it will matter. These last tests showed my TSH at 2.901. She had told me my target number was 2 so I guess that is pretty close. A friend of mine says maybe I need T3 in addition, but I guess Ill have to wait to find out. Whatever the case, I definitely will make sure Im not seeing the other doctor when I go back in May.


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## rylousmom

Hi, 
Just found this thread and hope someone can help.  I am having a crummy day and just got a call about my blood work from yesterday.  About 3 years ago, I found out I had thyroid cancer while pregnant, they removed my thyroid and but me on medication.  For the past two years, I have had whole body scan and uptake procedures and everything was fine.  February my TSH level was 0.36 now today they call and my level is 14.40.  I am really upset and don't understand how my level went so high.  My doctor is really not helpful and basically accused me of not taking my medicine properly.  Anyone have any clue how my number got so out of wack.  Thanks for any insight.


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## rie'smom

angelat said:


> I was diagnosed in July of this year with Hypothyrodism. Though my TSH wasnt that high, my Endo put me on levothyroxine because of my symptoms. After reviewing 5 years worth of my blood tests, she noticed that Ive been up and down for the past 3-4 years and before that I was borderline hypo. I cant tell you how many doctors Ive been to. My GP has sent me to a few neurologist over the years because she thought I may have MS (my sister has it). I had major tremor which got worse this year, to the point where I was dropping things and couldnt hold drinks with one hand. I had major brain fog and I was at the point where I would cry because I would be in the middle of a sentence and forget what I was saying. Finally my periods were all out of whack and I was getting hot flashes and night sweats. I made the appointment with the Endo because I thought I was going through early menopause. Im only 32, but my mom was finished when she was 36 and my grandmother by 40. so it wasnt unheard of. The endo ran all of the tests, then took me off BCP and had me retest and sure enough my TSH was a little over 6. I know that doesnt seem like a lot compared to what Ive seen others say theirs were, but it obviously was causing a problem for me. 2 weeks after going on the levothyroxine my tremor was completely gone. My nails actually started growing again and I felt better with a little more energy. But then it was all too clear that it wasnt going to last. While the tremor is still gone, my nails have gone back to the brittle mess they were, my skin peels and cracks and Im so tired ALL of the time. Ive also had pain and cramps in my legs, arms and back. I thought that was the medicine, but my Endo says that is the thyroid.
> 
> After my blood work a couple of weeks ago, I got a call from the other doctor in her office. This man simply told me my blood work was fine. When I told him what I was experiencing he told me that my TSH wasnt that high to begin with, he wouldnt have put me on meds and that it has nothing to do with my thyroid. I have to go back to MY Endo in May from what I understand. If I am feeling worse before then I know I should call her, but I just feel like Im not sure it will matter. These last tests showed my TSH at 2.901. She had told me my target number was 2 so I guess that is pretty close. A friend of mine says maybe I need T3 in addition, but I guess Ill have to wait to find out. Whatever the case, I definitely will make sure Im not seeing the other doctor when I go back in May.



 I'm so sorry that you have to go through this. It's hell trying to get your thyroid straight.

 I've posted before about Armour thyroid meds which have T3 AND T4.  Most doctors won't because they don't believe in it because it's an old medication but I'll tell you what, let THEM go through this hell. It was a miracle for me. Not saying that it would be for you but you never know.

Here's a link to the Armour website where you can find doctors in your area, if you're interested:
http://www.armourthyroid.com/con_phLocator.aspx




rylousmom said:


> Hi,
> Just found this thread and hope someone can help.  I am having a crummy day and just got a call about my blood work from yesterday.  About 3 years ago, I found out I had thyroid cancer while pregnant, they removed my thyroid and but me on medication.  For the past two years, I have had whole body scan and uptake procedures and everything was fine.  February my TSH level was 0.36 now today they call and my level is 14.40.  I am really upset and don't understand how my level went so high.  My doctor is really not helpful and basically accused me of not taking my medicine properly.  Anyone have any clue how my number got so out of wack.  Thanks for any insight.



Sounds like your doctor is out of whack! My sister in law's numbers jumped to 38 when she was taking her meds!


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## pakhowe

dougsmom98 said:


> I went for the thyroid uptake count and a thyroid scan yesterday.  I have not heard the results yet.



Any results yet?



dougsmom98 said:


> Five days before the scan, I had to go off the methimazole which the endo gave me for the hyperthyroidism.  I didn't think it was helping at all until I went off it because my right eye has been swollen for the last four days.  I am glad to start it back up and see if it makes a difference.



Has it made a difference?  I am glad you were able to find that things were different when you were off it.  Maybe they just need to find the right dose for you to feel 100%.

I got my biopsy results today.  I need to have at least 1/2 my thyroid removed.  They will determine if it all should come out after they see that 1/2.  Anyone want to let me know what to expect??  Will I be in the hospital overnight or come home?  How long should I expect to be out of work?  If it is cancerous and they remove it all will I have to have any other treatment (cancer treatment, I know I'll be on thyroid meds).  I know these are all questions I should have asked the doctor but on the phone at work I didn't really want to get into it.  I have an appoint. next week & will ask then but am wondering for now.....


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## frdeb1999

pakhowe..My DH went through this last November. The original surgeon only wanted to remove 1/2 the thyroid....but after lots of research and talking to people on this very thread we decided to push to have the whole thing removed. The original surgeon refused to do that....so we went and got not only a 2nd, but 3rd opinion and they all agreed it was best to remove the whole. He was in the hospital 24 hours. The surgery itself was nearly 4 hours from start to finish. He was sore and groggy for a few days after and then slowly started feeling better. He still is in the process of getting his med levels on track. It's been a process. We can both tell immediately when they are too low and they need to be increased. I can honestly say that he is slowly starting to feel like his old self prior to the on set of problems. And his 1st scan after surgery was all good. He goes for another in December. We'll once again hold our breath til we get the answer. Good luck with your treatment! Keep us posted.


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## HeyIt'sMe

I just found this thread which is weird considering my recent dealings with my thyroid. 

Some history -  In 1988 when I was 21 years old I was diagnosed with hyperparathyroidism and had a parathyroidectomy. The surgeon couldn't locate 2 of the 4 PTH glands so he removed 1/2 my thyroid. I've been on levelthyroxine ever since.

Flashforward to last month - - During my routine physical my internist noticed that my thyroid "felt fuller" and suspected I had a thyroid nodule so he sent me for a thyroid ultrasound. He was right - I did have a nodule (one that was 1.4 cm + three tiny ones). He referred me to an endocrinologist who told me I needed to have a biopsy. I figured that was coming but what threw me was when I was also told she wanted to test me for this rare hereditary cancer (MEN Type 1) because I had early onset of hyperparathyroidism and my mother died of pancreatic cancer.  She said it was rare and she didn't think that's what I had but waiting for those test results were agony! Luckily, the test was negative.

When I went for my biopsy the cytopathologist that performed the test was able to give me information about 15 minutes after the samples were taken (all 6 of them!). I thought they'd take the samples and then I'd have to wait to hear the results. She took the samples into another room while I waited with an icepack on my neck. She came back after 15 minutes and said her preliminary findings were that they got good samples and they all looked benign - nothing looked like cancer. Her diagnosis was a benign thyroid goiter. She said my endocrinologist would call me in the next week with the final report. Even though the cytopathologist said everything looked fine I still worried until the endocrinologist called. Well, they called and everything WAS benign! Whew. Now I just have to go have another ultrasound in a year and follow-up with the endocrinologist.


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## teacups

I have been on both Synthorid (Levothyroxine too) and Armour.
When things were good either worked the same.  But now that things are not so good, neither works well.  I am actually taking BOTH together right now.
Have not noticed any changes when the meds were switched.    I'd try just about anything at this point.     I have a doc who is good at trying things as long as it wont hurt me.  He knows how bad it is for me.


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## rie'smom

teacups said:


> I have been on both Synthorid (Levothyroxine too) and Armour.
> When things were good either worked the same.  But now that things are not so good, neither works well.  I am actually taking BOTH together right now.
> Have not noticed any changes when the meds were switched.    I'd try just about anything at this point.     I have a doc who is good at trying things as long as it wont hurt me.  He knows how bad it is for me.



How many grains of Armour do you take? I have a call in to my doc about upping my dose. I take 3 grains.


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## KAMLEM

teacups said:


> I have been on both Synthorid (Levothyroxine too) and Armour.
> When things were good either worked the same. But now that things are not so good, neither works well. I am actually taking BOTH together right now.
> Have not noticed any changes when the meds were switched. I'd try just about anything at this point.  I have a doc who is good at trying things as long as it wont hurt me. He knows how bad it is for me.


I can sympathize with you. We have been trying to get my levels straightened out for a while now. My body cannot handle big adjustments, so we have to move slowly and as you know it takes a long time to tell whether the adjusted dosage is right. I'm so sick of feeling miserable. Every bone in my body aches. It's even difficult to dry my hair now because my arms ache so much. We have a trip to WDW booked for April, but if I feel like this I won't be able to do the parks. It gets very discouraging.


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## DisneyMissy318

I thought I would post a little update - DD is 10 - had her thyroid removed in August (it was lingual).  Last blood draw was approx. 6 weeks ago and measured 118.  She's been on 112mg for 6 weeks.

We have her second blood draw this coming Friday (11/21) - (prayers and pixie dust welcome due to her needle phobia!)

We also have our appointment with the Pediatric Endrocrinologist at UVA on 11/25.  (Thanks to my friends here for strongly suggesting this to me!)

Madison was sick week before last - she had a fever for 7 straight days.  We went to the Dr. 3 times.  I was told that with her thyroid out of whack - that symptoms of other illnesses are magnified and colds and infections hang on longer than they normally would.  Not sure if that is scientific - but it seemed to be the case this time - she's never held onto a fever for that long.

As far as her "being" - I *think* she's doing okay.  I've noticed some hair loss in the shower.  Her hands feel like crocodile skin - so I make sure to lather her up with moisturizer.  She doesn't complain of any pains - but would rather just lay in bed reading, watching TV or playing with her DS than just about anything else.

We are leaving in about 2 weeks for Disney - we are renting my Mom a wheelchair because she gets tired easily - I'm thinking that Mom might have to share with Madi.

I'll post another update with the lab results - and what we learn from the endocrinologist.

Have a great day all!

DisneyMissy
Mom2Madi


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## jennz

Poor Madi.    thanks for the update!  Was she a big "lounger" before the thyroidectomy?  Every day she should get a little better...the skin and hair should definitely get better!  

HeyIt'sMe - great news! I'm sure you had some scary moments for a while there.  We might have the same endo - is yours at Riverview?


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## teacups

rie'smom said:


> How many grains of Armour do you take? I have a call in to my doc about upping my dose. I take 3 grains.




I had been on 240 (4 grains) and it just was not helping me.   I had started out much lower of course.  At one point when I was first upped to 180 I felt GOOD for about 3 weeks.  It was fantastic!!!!  Then, I crashed.   Even all the way up to 4 grains I still flet horrible.  BUT my T3 got so high that I couldnt go any higher so I switched back to Syntroid (Levo actually) to see what that was like these days.  I had been on it in the past.   Now I'm on 200 Levo and 15 Armour.  The Armour is so insignificant that it isnt doing a thing.  But I understand why my doc wants to proceed with caution.   I'd like to get to 200 Synthroid and about 30 Armour and then see what that is like.    Honestly there are days when I dont have much hope of ever feeling good
again.      

One question:  do you all think Syntroid and generic Levothyroxine is similar these days?  My doc says it is and not to spend the money on Synthroid.  Many years ago it was taboo to take generic.   Any opinions?


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## frdeb1999

DisneyMissy....hope everything goes well for your daughter this Friday!


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## KAMLEM

teacups said:


> One question: do you all think Syntroid and generic Levothyroxine is similar these days? My doc says it is and not to spend the money on Synthroid. Many years ago it was taboo to take generic. Any opinions?


My doctor does not recommend the generic. She said that every time you get it, it comes from someplace different and therefore the dosages can differ. She says that she never recommends it.


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## DisneyMissy318

Thanks for the well wishes guys!

If you will allow me to wax poetic for a minute - it makes me so sad that my child, you know - my baby, will have to face the trials and pain that I read about here from you - for the rest of her life.  I'm sure at 10 - and the fact that she has had a difficient thyroid since day 1 - she doesn't know what "normal" feels like.  She doesn't complain - she does what she can do - and we don't push her.  Of course as her Mom, I'm here to support her in anyway I can - to be her advocate at the doctor's visits - to educate myself so I know what questions to ask.  Thanks to you here for helping me be the best Mom for Madison that I can be.

Hugs to you all.

DisneyMissy


----------



## teacups

KAMLEM said:


> My doctor does not recommend the generic. She said that every time you get it, it comes from someplace different and therefore the dosages can differ. She says that she never recommends it.



Good to know.   I will talk to my pharmacist at next refil and try the real stuff.  Woudlnt it be nice it that were the magic I need??    Thanks.


----------



## teacups

DisneyMissy318 said:


> Thanks for the well wishes guys!
> 
> If you will allow me to wax poetic for a minute - it makes me so sad that my child, you know - my baby, will have to face the trials and pain that I read about here from you - for the rest of her life.  I'm sure at 10 - and the fact that she has had a difficient thyroid since day 1 - she doesn't know what "normal" feels like.  She doesn't complain - she does what she can do - and we don't push her.  Of course as her Mom, I'm here to support her in anyway I can - to be her advocate at the doctor's visits - to educate myself so I know what questions to ask.  Thanks to you here for helping me be the best Mom for Madison that I can be.
> 
> Hugs to you all.
> 
> DisneyMissy




I was 13 when I was DX'd and had no support from my parents.  I went thru Heck.  Good for you and your baby that you are standing by her and will help her and just be there in her cheering section!


----------



## KAMLEM

teacups said:


> Good to know. I will talk to my pharmacist at next refil and try the real stuff. Woudlnt it be nice it that were the magic I need?? Thanks.


I hope that this makes a difference for you. I know how badly you want to just feel good again, I feel the same.


----------



## kathleena

teacups said:


> One question:  do you all think Syntroid and generic Levothyroxine is similar these days?  My doc says it is and not to spend the money on Synthroid.  Many years ago it was taboo to take generic.   Any opinions?



Well, you could read this recent article about a letter the FDA has sent to the manufacturer that is pretty scathing:

http://www.thyroid-info.com/articles/synthroidproblems.htm

But if you are looking for opinions - Synthroid has manufacturing problems and could vary in dose.  That causes issues for some people.  This isn't to say that ALL Synthroid doses are wrong, but clearly there is evidence that it is hard to manufacture a stable amount of Synthroid into a pill.

On the other hand Armour comes from different animals and just like humans have different levels of thyroid hormone, so do the animals.  The issue with Armour is the same as the issue with Synthroid - you can't always rely on the dose.  This is why the use of Armour is so low in the American medical community - they feel the Synthroid is more reliable than the Armour.  (MDs as opposed to holistic or naturopaths)

So for me - I would go with the one that feels best to me.


----------



## DisneyMissy318

Just a quick update.  We went Saturday for Madison's blood draw.  She had a meltdown (needle-phobia) - the last draw was 7 weeks ago and she did wonderfully - this time she worked herself up into a tizzy... anyway - the nurse was very patient and we finally got the tubes necessary for the tests.

Her TSH was 118 7 weeks ago - and is now 15.7!!!!!!  Even though it's still outside of range - it is so much closer to 2 than 118!!

T3 - 164
T4 - 9.48
T3 Uptake - 28

Overall - not too shabby!!

We meet with the Pediatric Endrocrinologist tomorrow - so I'll be glad to show him these results at our first visit.  

I read everything you write - and am much appreciative for this thread and those of you who share so much of yourselves here.

Happy Thanksgiving to you all!

DisneyMissy
Mom2Madi


----------



## jennz

That's great!!!  Is she feeling more energetic?  I would guess that she is.  I'm so so sorry about the needles, poor girl and poor mom.   I'm glad you had a patient nurse, that helps a lot.

I hope you like your ped endo!  Let us know what s/he says...

Happy Thanksgiving to you too.


----------



## pakhowe

It's been a while since I've posted.  I've been reading & keeping up though.  I'm glad to have this thread and all the information I've received from it.  Thank you all.  

I go on Monday for my thyroidectomy.  Still don't know if it is cancer or not.  Hopefully will know on Monday without having to wait again.


----------



## jennz

Good luck to you on Monday - is it a complete thryoidectomy you're having?

I'll be thinking about you...


----------



## frdeb1999

Good luck Pawhowe


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## frdeb1999

So sorry....meant pakhowe! My fingers sometimes have minds of their own!


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## DisneyMissy318

Good Morning All...

Wanted to post a note saying that I'll be thinking about Pakhowe today.   

Also wanted to update on our appointment with the Ped Endocrinologist on Tuesday.  It went well - I was SO glad that I had the blood results from our blood draw to give to them - it enabled them to get an idea of what was going on from the start.  I also found out that the ENT who removed Madison's thyroid consulted Dr. Clarke before and during surgery .  I was so happy to hear that!  Dr. Clarke knew even more than we did about Madison's condition.  He told us that most lingual thyroids do not have to be removed - but Madison also had Hashimoto's which caused a goiter - which was growing in size and had to be removed because it was impedeing her airway.  So... that was new information that we didn't know.

She was given the once over by a nurse practictioner - with no personality.  It was pretty complete - she felt her b**b buds - looked at her "pubby" - under her arms, etc. etc.  Madison was MORTIFIED    I actually have to close my eyes when I'm helping her with her sports bra in the mornings - so to have this complete stranger - who was very clinical - taking a look was off the chart for her!

Based on her bloodwork - they raised her dosage to 125mcg (up from 112 7 weeks ago).  The really good news is that he won't see her again for three months - and he said we don't need to do blood until that visit!    Madison was pretty happy - although she realizes we have to do the draw at UVA instead of "my" hospital.  When the time gets closer - I'll ask Dr. Clarke to put his order in over here if I think it's going to be an issue.

One thing that I thought was odd was that both the NP and Dr. Clarke said that Madison's weight gain cannot be attributed to the thyroid or the "lack of" and that she needs to lose weight.  OK - she gained 20 pounds in the 6 weeks after surgery - she had a thyroid, while it wasn't working well, it was working - then after it was removed - she immediately gained weight.  But the comments made were along the lines if you are waiting for the thyroid replacement to aid in losing weight it's not going to happen - she (Madi) just needs to get moving.  OK - again - its about all she has been able to do to get to school in the morning and she's compeltely worn out by the time she gets home, it's a little hard to make her run on the treadmill!  (Sorry for my little rant.)

I hope everyone had a wonderful Thanksgiving - we are off to Disney in just three short days!  (I bet Madi will get some excercise there!)

Happy Holidays All!

DisneyMissy
Mom2Madi


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## jennz

Great news!! I'm happy for you both.

I had Hashimoto's too, they found it when they took out my thyroid as well. 

As far as the weight gain I have to say that's a bunch of crap.   That's my professional opinion.  When I was off my meds (which = no thyroid) I gained weight and hardly ate anything - seriously, I had no appetite.  I would have been angry, but it's one of those things that I guess you say "whatever" but know that it's not true.  20 #s in 6 weeks - that's a LOT, especially as a % of her weight and it's got to be due to that.


----------



## rie'smom

I agree with Jenz. The doc and the NP are  full of it if they're saying that the weight gain is not due to thyroid issues.
When my original doc left, the new guy switched me to Synthroid .25. I gained 13# in 1 month!! The new doctor that I found switched me back to Armour and I lost the weight because I was back on the right dosage.


----------



## pakhowe

Thank you all for your wishes.  I am home & only had 1/2 my thyroid removed.  The initial biopsy came back benign & we are waiting to hear on the frozen cross section that was sent for further testing.  I am sore and tired but doing well.  Unfortunately for my DH I can talk just fine, not sore at all to talk.  I will go next week for a follow up and find out if I have to take any replacement tyroid meds.  Until then I am out of work for a while.  I still have a nodule on the left side but it was too small to biopsy & DR says I will have to have ultrasounds to keep an eye on it.

After surgery is coughing up normal?  I feel like there is stuff caught in my throat & I keep coughing up stuff.  It hurts to cough & I'm wondering if it is normal after anesthesia?


----------



## jennz

Thanks for letting us know you're doing okay!   

I don't remember coughing up afterwards...maybe it is the anethesia.

I'd have to say I'm pretty sure your DH isn't minding you talking, he's just glad you're still there and able to!! 

That's the same thing they did with me, took out 1/2 the first time and my biopsy came back benign.   It did come back positive for cancer when they sent it out though.


----------



## KAMLEM

jennz said:


> That's the same thing they did with me, took out 1/2 the first time and my biopsy came back benign. It did come back positive for cancer when they sent it out though.


That's exactly what happened to me, too. I thought everything was ok until I went for my follow up after the surgery.

I don't remember coughing anything up, either. Maybe you should call your doctor if it continues.


----------



## pakhowe

KAMLEM said:


> That's exactly what happened to me, too. I thought everything was ok until I went for my follow up after the surgery.
> 
> I don't remember coughing anything up, either. Maybe you should call your doctor if it continues.



I'm feeling better now.  The coughing has stopped.  I think I have been trying to do too much too soon.  I'm glad the Dr gave me 2 weeks off.  So when you got the results back did you have to go back in and have everything removed?  The Dr said there is less than a 1% chance of it coming back malignant but I want to know what happens next just to be prepared.  How are you both doing now?  Has it been a while and are your thyroid levels normal on the replacement meds?  Thanks again for all the advice


----------



## KAMLEM

I had to go back in and have the rest of it removed. They did not end up finding anything, but I'm still glad I did it because otherwise it would always be hanging over me. I had that done on 6/18. After that I was scheduled for the radioactive iodine treatment, but when they did the body scan they did not find any traces of thyroid tissue left so they did not have to do the treatment. I was thrilled, but I had done the low iodine diet for nothing! 

Since I had to go off the synthroid in preparation for the RAI treatment, it wasn't until mid-August that I got back on it. It is now December and we are still trying to find the right dosage. We discovered that I could not increase my dosage too much at one time or I would get all the symptoms of being hyper and feel awful. I am now up to 137 mcg and I think this will do the trick. At 125 mcg my tsh was 4.9, but I still felt awful. For me, it needs to be between 1 and 2. I have to go back for blood work in about 4 more weeks.


----------



## MrsKreamer

Hi!  I was diagnosed with Hashimoto's Thyroiditis.  We finally just got my levels in the normal range(after a year of continually increasing my synthroid).  I am still a little lethargic, and my memory is horrible.  I am going to a Rheumatologist in 2 weeks.  I have been having joint pain and my Endo said Hashimoto's sometimes piggy-backs with other Auto-immune disorders.  Luckily I have already tested negative for Lupus.


----------



## jennz

pakhowe said:


> I'm feeling better now.  The coughing has stopped.  I think I have been trying to do too much too soon.  I'm glad the Dr gave me 2 weeks off.  So when you got the results back did you have to go back in and have everything removed?  The Dr said there is less than a 1% chance of it coming back malignant but I want to know what happens next just to be prepared.  How are you both doing now?  Has it been a while and are your thyroid levels normal on the replacement meds?  Thanks again for all the advice



They called me at home - I think it was the next day - and told me the results came back and they were very sorry but it was malignant and they had me scheduled for surgery the next morning.  I knew within the 48 hours.  Unfortunately the 2nd surgery did my parathyroids in and I don't have those any more.  

I get checked every 6 months for my thyroid levels.  I think they probably need to be adjusted since I've been very tired.  I've gained weight so that might be why - need more meds b/c there's more of me!


----------



## torismom

Hi, everyone I have a question for the thyroid experts. Due to my inability to lose weight, being tierd , a few other symptons and taking depression/anxiety meds My pysh dr tested my tsh levels and they were 4.36. He said that was high and I need to watch it. That was it. Anyone have advice for me?

Also, my dd will be going to an endo in Jan because all of her levels are her. Her tsh stuck out to me because it was over a 6. All of her numbers were high.She is also an asthmatic and takes a lot of steroids. 

I am worried for the both of us. Thanks for any words of wisdom!!


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## jennz

Wow - what are you supposed to do to "watch it?"  That's concerning...I have no way of knowing what my levels are!  I can guess but that's it.  I'm sure you must feel frustrated!  Maybe you can ask your dd's endo about it and tell him you'd like to make an appointment to see him...how does that sound?  S/he'll probably test other levels as well.  Did your dr. run a cbc?

I know your levels can change even over such a minor thing as if your menstrating (sp?), but I'd say you need more input.  Heck, I've been on meds for 15 years and I'd need more input!!  

Good luck!!


----------



## rie'smom

torismom said:


> Hi, everyone I have a question for the thyroid experts. Due to my inability to lose weight, being tierd , a few other symptons and taking depression/anxiety meds My pysh dr tested my tsh levels and they were 4.36. He said that was high and I need to watch it. That was it. Anyone have advice for me?
> 
> Also, my dd will be going to an endo in Jan because all of her levels are her. Her tsh stuck out to me because it was over a 6. All of her numbers were high.She is also an asthmatic and takes a lot of steroids.
> 
> I am worried for the both of us. Thanks for any words of wisdom!!



_American Association of Clinical Endocrinologists that doctors "consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.0.( http://thyroid.about.com/od/gettestedanddiagnosed/a/normaltshlevel.htm)

Many doctors routinely treat patients in the upper 2 range. Honest to God, if I were you, I'd see another doctor. Your thyroid levels are so important not only to your health but to your quality of life. Who wants to just exist? I used to feel that I was just existing until my correct levels with Armour were
found. Your thyroid levels could be contributing to your depression and anxiety. I was on Prozac for 10 years before finding out about my thyroid issues. I've been off since 2000. I'm not saying that this will happen with you ,however, your thyroid can affect this.

I encourage everyone to investigate their thyroid problems. This is one site that I've found to be helpful. There's a link to her website. The thing I like about her is that she is a thyroid patient. She sees this from our perspective._


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## CinderelliT

Does anyone have adrenal gland problems with Hashimoto's?
I haven't taken the time to read the entire thread since I have a wedding to photograph tomorrow (Yay me!) and an 8 page research paper due on Monday (NOT yay me!).
I was diagnosed with Hashimoto's 10 years ago, and I currently take Armour thyroid.  Every time I find a dr that I like, they either stop taking insurance, so I can no longer afford them, or they retire.  Now I'm stuck with a quack.  Anyway, I was originally diagnosed as having Addison's disease as well.  I was put on steriods to help my adrenals, and for many years, the combination of steriods and thyroid medicine worked wonders.  Then after my DD was born, I got really sick.  It turns out that I developed Cushing's syndrome - which is the opposite of Addison's.  The endo said that didn't really have a need for the steriods, and that I was not diagnosed correctly.  So he weaned my off over the course of several months.  I am better overall than I was then, but I am still having problems with my glands, my insulin levels and my blood sugar levels.  I think that sometimes I need a small dose of steriods.
Has anyone else experienced anything like this?  Right now I am also suffering from weight gain, severe depression, and anxiety.  My TSH came back at 2.5, so Dr. didn't change my medication.  Any advice and support is much appreciated.
Thanks


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## lisah0711

CinderlliT, I don't have any Hasimoto's advice for you but I would just keep pushing and pushing and questioning things.  It took my endocrin doc over 3 years to put me on thyroid -- she just kept "hoping" it would come back to normal function.  They aren't the ones who have to live feeling bad all the time and the only person who is going to advocate your cause is you.  Unfortunately that is just the way our health care system works.

I do want to say a big, big thank you to the folks who do post on this thread.  Thanks to you I got my doc to switch my prescription to Synthroid from the levothyroxine and I feel so much better already.  For the two years I have taken thyroid now we have had problems getting the dosage right.  I told the doctor that I heard that the generic is a problem because of the fillers and binders interferring with absorption.  She said yes that was correct and agreed to let me try the Synthroid.  I wanted to ask why she didn't do that from the beginning but she is retiring and I will be going to a new doctor so it is not worth pursuing.  Grrrr!


----------



## luvmarypoppins

Just wanted to know if anyone did the low iodine diet before the radiation treatment. I dont go to the oncologist to next week and I dont know if this will be the treatment but it was mentioned. I looked it up on the internet and it seems basically you can eat nothing? Dairy? etc I am stressing out thinking what I could eat??


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## lisah0711

I don't have any low iodine diet advice for you -- I would like to think that if your diet was going to be really restricted they would have told you before you left the hospital.  

I did want to say that I am glad that you are doing better after your surgery -- you're guardian angel was working overtime!  No angel emoticon so I will send you some   for a speedy recovery.


----------



## teacups

Hi All-  I have no functioning thyroid due to RAI 20 or so years ago (by the way that would be less than my last resort if I could do it over again ) but I am wondering how my med replacement dose compares to others doses.  I asked this once on another thread and got a bunch of "it doesnt matter what my dose is, everyone is differnt so knowing my dose wont help you".  Yes. I fully understand that... but I'm terribly curious.   
I take Armour Thyroid three 90's a day. So, 270 mg. 60 is a grain so under 5 grains.
That seems like a lot and I still feel so wrong.  I'm simply curious.... I'd appreciate anyone on Armour (or even Synthroid. I can calculate the differences) who cares to share. Thanks!


----------



## lisah0711

Wow!  That does seem like a lot!  But that may be what it takes for your body to work properly.

I have taken anywhere from 25 mcg to 75 mcg of levothyroxine.  I just got my doctor to write the prescription for Synthroid because of concerns about the binders and absorption in the generic.  Now I am taking 37.5 mcg of Synthroid every morning.

I had another thyroid ultrasound yesterday to monitor the size of the nodules -- there are three.  I've been working on this problem for five years now and getting a little frustrated that it is not consistently better and we still have to tinker with the meds.  I start with a new endocrine doctor in March because my old one is retiring.  I hope he isn't so conservative in his treatment.  My old doctor always hoped my thyroid function would return to normal after a year or two -- hello!  Five years now, I think we've waited long enough for that ship to come in . . . . sorry, just venting a little this a.m.


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## KAMLEM

I had my thyroid removed in June and we are still working on the dosage. She needs to increase it slowly because when she tried to do it more quickly I didn't feel well. Right now I am up to 150 mcg. I'm hoping that this does the trick.

As far as the low iodine diet, I did it. It wasn't fun at all. Right before I had the treatment they decided I didn't need it based on the body scan so I did it all for no reason!


----------



## newarknut

It's been two years since I had my cancerous thyroid removed.  I did the radioactive iodine diet and it was alright.  I remember eating alot of potatoes, hamburger, unsalted peanuts, and, oh yea, kosher wafers (nasty).  I think I was able to use kosher salt for seasoning.  Once you have a list of what you can eat, it's not that big of a deal.  I did wolf down a big meal when it was all over with, though.  The worst part was being a prisoner in my own home for over a week!  My wife took good care of me while I was radioactive.

I had my last blood work done this past year using thyrogen shots and I'm all clear (as far as they can tell).  Praise God.  

If you're going through the process now, trust in the Lord and remember His many promises to love us and to watch over us!

FYI...I take 175mcg/day.  I'm about 6'2" 200lbs.


----------



## jennz

I also have no thryoid and I take levoxy, 244 mcg/day (two of the 112 tabs). For whatever reason I was able to drop from around 350 on synthroid when I switched.  My endos have liked to keep my TSH < .1 b/c of the cancer.


----------



## Mimmy Mouse

I just found this thread and boy am I glad.  I am hypo.  Let me give you a brief history.  Was diagnosed with Hashimoto's thyroiditis when I was in my early 30's.  I am now 63.  Never had much of a problem all those years until about 4 years ago I started having a problem breathing, climbing steps and my heart was beating fast.  My thyroid dr had just changed my meds about 3 weeks before.  The doctor sent me for all kinds of tests thinking something was wrong with my heart.  About 10 tests and 2 weeks later they found out that I was getting too much thyroid.  I was taking .150 7 days a week.  So they knocked off 1 day and all symptoms went away.  Was fine again until last July when my family doctor noticed my last tsh test was on the low side, .4.  So he dropped me from .150 6 days a week to .137 7 days a week.  Take meds for 6 weeks then get a blood test.  6 weeks later it was .18.  (I felt he was going the wrong way with the meds but I figured he was the dr. not me)  So then he dropped me down to .125 7 days a week.  6 wks later blood test was .11.  He put me back on .137 to try again.  I asked to have all the tests done, not just tsh.  I just got bloodwork back last night.  Tsh now .04!  MY t-4 total was 13.4 high (range 4.5-12.5)  My Free T4 index was 4.2 high (range 1.4-3.8).  My T3 total was ok  128.  my t3 uptake was also ok  31.  my t-4 free was ok too  1.6.  I don't see the doctor again until next week and they won't tell me anything on the phone.  I have no idea what all these numbers mean.  Can anyone help?   Sorry, guess not such a brief history.  Thank you

Bette


----------



## luvmarypoppins

I would like to know if anyone did 2 thyrogen shots before the RAI or did you have to not take your synthroid. I am reading conflicting stuff.

I read on the net that one lady said her dr. who was from Sloan Kettering, major cancer center here is only doing the thyrogen stuff now these days etc. 

I know the rad. onc. said if I was staying overnight in the hosp. which I chose to do whe was uping my rad dose and giving me the shots, versus the scan.?

Any insight, TIA.


----------



## KAMLEM

Why do you need to stay overnight for the RAI?  I didn't even stay overnight when I had my thyroid removed, I had my surgery at 7:30 a.m. and I was home by noon.


----------



## Christine

KAMLEM said:


> Why do you need to stay overnight for the RAI?  I didn't even stay overnight when I had my thyroid removed, I had my surgery at 7:30 a.m. and I was home by noon.




Each individual state has restrictions on whether you can leave the hospital after a high dose RAI treatment or you must stay.

In Virginia, if you have more than 29.9 mci of radiation, you must stay overnight.  When your radioactive levels decrease to a certain level, you can leave.

Some states don't have this restriction and they let you leave right after you have a high dose treatment.  The problem is that after these treatments, you emit an elevated level of radioactivity that can be harmful to children and pregnant women if they are within 6 feet of you.


----------



## Christine

luvmarypoppins said:


> I would like to know if anyone did 2 thyrogen shots before the RAI or did you have to not take your synthroid. I am reading conflicting stuff.
> 
> I read on the net that one lady said her dr. who was from Sloan Kettering, major cancer center here is only doing the thyrogen stuff now these days etc.
> 
> I know the rad. onc. said if I was staying overnight in the hosp. which I chose to do whe was uping my rad dose and giving me the shots, versus the scan.?
> 
> Any insight, TIA.




Here is the insight on this.

A few years ago, they did a study with people who scanned and had RAI after being off their meds and they tested against giving them Thyrogen shots and having the RAI.  The RAI was less effective for those having Thyrogen shots.  Treatment results were better if a person was removed from their Synthroid.  

They were trying to get to a point where Thyrogen worked as well as going off your medication.  Maybe they have gotten to that point (I haven't kept up with the studies) or maybe they results are close enough that it doesn't matter.  

So, this is why you will get conflicting information.  Some doctors still don't believe that TREATING they thyroid cancer under the Thyrogen injections is as effective or as good as removing you from your meds and then treating.  Other doctors feel comfortable with it.

And certainly, if you have other health risk factors, going very hypothyroid could be detrimental to your health.


----------



## luvmarypoppins

Thanks, I am going to ask the rad. onc. about this. But it seems too late at this point? I had the option of staying over night and with a teeny tiny house and 3 ds, they are older, I took dh advice to stay. She said if I didnt I would have to save my lst night clothes for 3 months before getting rid of them and since during my post surgery, I threw up and blew my jugular vein, its better to be there in case some strange or weird thing happens, as will most likely occur with me. They can handle it quickly instead of taking over 30 min. to get back to the hosp. etc.


----------



## Christine

luvmarypoppins said:


> Thanks, I am going to ask the rad. onc. about this. But it seems too late at this point? I had the option of staying over night and with a teeny tiny house and 3 ds, they are older, I took dh advice to stay. She said if I didnt I would have to save my lst night clothes for 3 months before getting rid of them and since during my post surgery, I threw up and blew my jugular vein, its better to be there in case some strange or weird thing happens, as will most likely occur with me. They can handle it quickly instead of taking over 30 min. to get back to the hosp. etc.



Yes, it's probably too late.  But, if you trust in your doctor and put your faith there, then you have to believe that you are doing the best that you can do for yourself at this time.

When I was first diagnosed in 1995, there were no support groups, no way to get my hands on any research, NOTHING.  It all happened so quickly that I wasn't sure I was with the best doctor but when someone tells you that you have cancer, you don't really feel like you have time to shop around like you're buying a car.  So I went with who I ended up with.  Overall, I did *not* get optimal treatment initially and I ended up having successive treatments down the road that probably I could have avoided.  But, well, what are you going to do, you know?

I agree that being in the hospital isolation is going to be FAR easier on you then staying at home.  Depending on the dose they give you, you will not feel that great so it might be better to be alone.  Also, you don't have to worry about tainting the silverware, the toilets, the bath, etc.  The hospital will have to deal with that.


----------



## luvmarypoppins

Oh my head spins. I did read on the internet that some girl posted that her dr. in nebraska came from Sloan Kettering, the major cancer center here and he said the shots are all they do now. I know my rad. onc. has written a chapter in a book about thyroid carcinoma. She seems pretty up on everything and it seems like it is also this university teaching hospitals protocol too as they gave me a pre printed form. That had blanks to fill in , the title was like Prep for RAI 131 etc.

Thyrogen Injection 1 on   (line for date)
Thyrogen Injection 2 on  (line for date)
and then the scan dates. She said I am not getting scanned since I am coming in?

This diet is driving me nuts too. They said the hosp. follows its own guidlines and is so much more strict than the thyca. cookbook stuff. The one thing they are letting us have that is not on the list is unsalted butter? I did ask the dietician if it is o.k. since it has milk and she said yes. 

Of course I want to give myself the best chance possible for all of this and now I am having doubt and too many ?? in my head. etc. 

I am only staying overnight for the lst day. That  is a thurs., coming home on  Friday  the 13th and then sat. I am suppose to go for a blood test. at the local lab. 

I honestly dont like the personality of the rad. onc. She is not encouraging or anything at all. I asked my endo. and she said, its just her personality. My endo went over my tumor and biopsy stuff and  hardly the rad. onc. did. at all.


----------



## frdeb1999

luvmarypoppins....if your not comfortable with any part of your medical team I encourage you to find new ones. We did this with my DH and it was the best thing we ever did. Very hard to do when your in the middle of all this. But you have to deal with them so often and if you don't see eye to eye, or have problems with them it is just going to make things harder. Good luck on all the upcoming things. Wish you nothing but the best.


----------



## Christine

*Oh my head spins. I did read on the internet that some girl posted that her dr. in nebraska came from Sloan Kettering, the major cancer center here and he said the shots are all they do now. I know my rad. onc. has written a chapter in a book about thyroid carcinoma. She seems pretty up on everything and it seems like it is also this university teaching hospitals protocol too as they gave me a pre printed form. That had blanks to fill in , the title was like Prep for RAI 131 etc.

Thyrogen Injection 1 on   (line for date)
Thyrogen Injection 2 on  (line for date)
and then the scan dates. She said I am not getting scanned since I am coming in?*

Yes, I get the same paperwork when I have my scans.  Usually you get a shot on Monday, a shot on Tuesday, you take your RAI on Wednesday and then scan on Friday.  That's how it works with a scan.  Wednesday is usually when your Thyrogen-stimulated TSH peaks so they like to give the RAI at that point.  It is still probably pretty high for a few days.

*This diet is driving me nuts too. They said the hosp. follows its own guidlines and is so much more strict than the thyca. cookbook stuff. The one thing they are letting us have that is not on the list is unsalted butter? I did ask the dietician if it is o.k. since it has milk and she said yes. 

Of course I want to give myself the best chance possible for all of this and now I am having doubt and too many ?? in my head. etc. *

The diet is tough and conflicting.  I never had any type of butter or margarine.  There was a Fleischman's product that was deemed okay, but at that point, I just tried to avoid it.  By the time you get to the hospital and eat their food, your RAI will be already at work so at that point, your as safe as your going to be with the diet.  The key is to try your best and that's all you can do.  Just remember that many years ago (when I was diagnosed), the Low Iodine diet wasn't even done.  All they told me AFTER I had my treatment was to avoid fast food and seafood.  That was it.  Plenty of people did fine back then.  Anything you can do with your diet is just helping and making it better.

*I honestly dont like the personality of the rad. onc. She is not encouraging or anything at all. I asked my endo. and she said, its just her personality. My endo went over my tumor and biopsy stuff and  hardly the rad. onc. did. at all.*


You know, there's always one jerk in every medical team.  I was lucky that the radiology people with me were FABULOUS, it was just my endo and his nurse that plagued me for years.  They were okay for the most part, but at times, they caused me a LOT of anxiety.  I stayed with them because of their reputation.  If this radiologist is one that your doctor trusts, you may have to overlook the bad bedside manner.  So long as your treatment is good, you might just have to tolerate it.


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## luvmarypoppins

Well I was sick all week end throwing up with a virus I caught from ds21. So all week end I had absolutely nothing but gingerale and distilled water ice cubes. I am having dh call the rad. onc. today and see if this is o.k. I think I kept the synthroid down yest, but cant be sure. Never a dull moment. Well at least I didnt do the diet for 2 days, but dont know if this is acceptable or not. gheesh, never a dull moment around here lately.


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## frdeb1999

Hope your feeling better soon luvmarypoppins. We had that here last week and it's miserable.


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## Christine

luvmarypoppins said:


> Well I was sick all week end throwing up with a virus I caught from ds21. So all week end I had absolutely nothing but gingerale and distilled water ice cubes. I am having dh call the rad. onc. today and see if this is o.k. I think I kept the synthroid down yest, but cant be sure. Never a dull moment. Well at least I didnt do the diet for 2 days, but dont know if this is acceptable or not. gheesh, never a dull moment around here lately.




You are good to go.  There is nothing in the diet that you *need* for the test.  The diet is all about eliminating iodine.  I think your virus helped you to do that successfully!!!


----------



## angelat

I have a question that I thought maybe someone else here might be able to help with. For the past 10 years I've had problems wtih dehydration (dry mouth, eyes, and muscle pain from dehydration) on a day-to-day basis. After I realized that this was an ongoing problem I just upped my water intake. I drink about 40-60 ozs of water at work and then another bottle or two at home at night. I've just learned to live with it all. 

However, last Saturday I woke up to my left eye tearing horribly, by the end of the weekend my eye was also swollen and it hurt pretty bad. It felt like the film over my eye was peeling! Monday I went to an eye doctor (not my usual one b/c they don't take my medical insurance, only my vision insurance) they checked my eye and told me that my problem was that my eyes were EXTREMELY dry. He equated it to having chapped hands, only I have chapped eyes. He mentioned that it could be related to my thyroid problem. 

Tuesday I called my Endocrinologist to let her know what was going on. I left a message anyway. Today I got a call back and she wants to see me on Monday. 

Has anyone else had something like this? If so was it related to your thyroid? Years ago when I first started complaining to my PCP she sent me for bloodwork to check for Sojrens, but that was negative she said. I just want to know what is going on because after 4 days on the drops they gave me my eyes are still not feeling better. 

TIA!!


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## luvmarypoppins

Well if you have read some other threads, you will see that I didnt have a virus, I had a bowel obstruction and spent a week in the hosp. after emergency surgery, so the radiation and diet is delayed again.

 Just wondering if you did the diet, how did you keep food "moist" without gravy etc. I have a hard enough time swallowing etc. I did put some jelly on some chicken and got it down etc. If anyone has any tips, I would appreciate it.


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## Christine

luvmarypoppins said:


> Well if you have read some other threads, you will see that I didnt have a virus, I had a bowel obstruction and spent a week in the hosp. after emergency surgery, so the radiation and diet is delayed again.
> 
> Just wondering if you did the diet, how did you keep food "moist" without gravy etc. I have a hard enough time swallowing etc. I did put some jelly on some chicken and got it down etc. If anyone has any tips, I would appreciate it.



Hmmm...well, I never eat gravy anyway, so I don't know.   When I had chicken on the diet, I vaguely remember using some recipe on the thyca website that had a balsamic glaze.  Can't quite remember though.  Here is a glaze/sauce from another low iodine book I have.  Says it can be used as a dipping sauce for ribs, chicken wings, or chicken fingers.

2 cloves garlic, minced
1/2 small onion, minced
1 TBSP salt free tomato paste or ketchup
1 TBSP lemon juice
1/2 cup apricot preserves
1/4 cup orange marmalade
1/2 tsp. non-iodized salt
1/2 tsp. dry mustard
1/4 tsp ground ginger
1/4 tsp chili powder
1/4 tsp dried basil
1/4 tsp pepper

Combine all ingredients in a saucepan.  Bring to a boil over medium heat.  Boil for 30-45 seconds.  Stir well to blend.  

Sauce can be stored in the refrigerator for about a month.  Delicious as a glaze or as a dip.

Here's another:

Pineapple Dipping Sauce

Delicious as a dipping sauce for chicken.  Serve extra sauce over rice.

1 Tbsp. cornstarch
3 Tbsp. cold water
2 cups pineapple juice
1 Tbsp rice vinegar or lemon juice
1/3 cup minced red or green pepper
1/8 tsp red pepper flakes
1 cup finely chopped pineapple (fresh or canned)
2 green onions, minced
1 tsp minced fresh ginger

1.  Blend cornstarch with cold water in a small bowl until smooth.  Combine pineapple juice, vinegar or lemon juice, minced peppers, and red pepper flakes in a saucepan.  Bring to a boil.

2.  Add cornstarch mixture and whisk over medium heat until thickened and smooth about 2-3 minutes.  Remove from heat and cool.  Stir in pineapple, green onions and ginger.  

Yields about 3 cups.  Sauce will keep 4-5 days in refrigerator, in a tightly closed container.  You can make half the recipe but it is so good, why bother?


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## Bean and 2

Hi...I've been reading here and thought maybe someone could help me out.  This is kind of long so soory about that in advance.  Last Sept I had some blood work before surgery and found out my thyroid was off.  The Dr has since then been trying to get it right.  These have been my blood test results so far.

7/10/08  TSH   10.08
9/18/08  TSH   11.78    Free T4  0.07
12/23/08  TSH  49.990     Free T4   0.85
1/21/09    TSH  17.20       Free T4    1.31
3/04/09    TSH   5.13       Free T4    1.8

My Dr wants to up the synthroid to 175 MCG.  My problem is I feel fine and have felt fine.  To complicate matters  Jan-June of 08 I had chemo for breast cancer.  I did fine through all of that sometimes I would feel a little more tired then usual but nothing big.  I had surgery in July. I started radiation in Oct and finished that in Dec.  Same thing there maybe a little tired but not excessive.  

I'm probably not as active as I was before but I'm also 43 and a single parent.  I've kept the same work schedule and my kids play indoor soccer and softball.  I take them to all games and practices it's not like I've had to drag myself to any of these things.   I guess I'm just wondering if I really have a thyroid problem?  It's seems as though I do but I keep getting hung on the fact that I feel fine.  I have a little more energy lately but I assume thats just getting over the chemo and radiation.  I also had a pretty bad infection in Dec and spent 4 days in the hospital so I'm thinking it would take a bit to get over that too.

I guess I just want to know if I should feel bad with the TSH that high?  This will be the 4th time the Dr has upped the dosage, should I be feeling different on each dosage?  I just really don't want to take medication that I don't have to.  Thanks for reading all of this and for any help you may have.


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## angelat

Your TSH levels have been pretty high at times. That's nothing to scoff at. Stay on the meds and just work with the doctor to help get them right. Not having your thyroid functioning properly can cause problems with other organs - including your HEART - even when you may feel fine. It's also harder to heal from things (surgery, wounds, etc) when your thyroid isn't working right. 

A big   to you for overcoming breast cancer. Another  one for being a single mom through all of this. Be patient and let your doc do his/her job.  I hope things start to get better and that you can get your levels into the normal range soon.


----------



## Christine

Having a TSH of 5.18 (your best so far) is not terrible.  It is technically hypothyroid.

Some people don't feel bad with higher TSH numbers.  I am one of those people.  I remember after my last treatment (thyroid cancer) where my TSH got really high (130), when I started back on my medicines I gradually felt better and better.  At one checkup, I told my doctor "I feel great!!"  My TSH was at 8.5.  Many people feel horrible at that level.  

At any rate, I kept working at my dosage and I finally got to where I need to be (0.3).  

I would suggest that you take the next dosage higher and work to get your TSH at around 2.0.  That seems to be the "magic number" for optimal body functioning.  You may not feel any better at that number than you do at 5.18 but I think it will be better for your body.  And since thyroid hormones are not like "medications" per se, it does you no harm to increase the dosage.


----------



## Bean and 2

Thank you both for taking the time to answer.  I started the new dosage this morning.  Hopefully this will do it.  I have 2 surgeries left for the reconstruction and then I'm done...I hope forever!  I was just looking forward to getting a break it's been a really long year.


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## Tinker'n'Fun

Just thought I would hop in and introduce myself. My name is Diane and I have Hashimoto's Thyroiditis Bizarre. My thyroid was removed in 2002 due to a few nodules that came back inconclusive on the biopsy. All was well after the final pathology but they had to remove the whole thing. Struggled afterwards with Vitamin D/K/Potassium. Parathyroids were supposedly ok...

Fast forward to the last year. Levels are freaky. Vitamin D is non-existant, Potassium will not come up, need B12 shots, and TSH is around 8ish and my T4 is actually on the high side. They upped the Synthroid, but I need to get a scan on my parathyroids as the Hashimoto's may have attacked them. NOW I KNOW this is not normal. My doc says I am a test case. They think the Hashimoto's has cause more auto-immune in my system. They have taken my gallbladder and I have "suspicious lesions" on my lungs that they attribute to all this...

So hello, I will backtrack and read about you all. I look forward to posting with you all. Diane.


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## Christine

Hi Diane and welcome!

This all does sound strange.  Do they suspect that your parathyroids are not working; hence, the low Vitamin D?  Just about everyone is low on Vitamin D, thyroid issues or not, but I'm thinking yours is something else?  How are your calcium levels?  If they are fine, then I would be perplexed as to why the Vitamin D is low.

I have my entire thyroid removed, plus one parathyroid.  My remaining three parathyroids are somewhere in my neck.  I always worry about how they will ever find them if something goes wrong.  

So your TSH is high but your T4 is high also.  Very odd.  Do they think that maybe you aren't a converter of T3?


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## jennz

Bean and 2 - right now you don't feel bad, but maybe after you increase your synthroid you'll look back and say "Wow!  I feel better now than I did then."  Usually the way I feel bad is tired, and when my levels are adjusted I feel like I have a lot of energy - not that I felt "bad" before but instead feel "good" now.

Tinker'n'Fun - I had hashimotos' too, and thyroid cancer.  After the final pathology they saw that I had cancer and I had to go back in and have a 2nd surgery and my parathyroids never recovered.  

I can definitely tell you if your parathyroids weren't functioning at all you'd know!!   I take a lot of calcium and a synthetic vitamin d to help w/absorption.  I wonder what your calcium levels are if you are super-low on D?  Feel free to ask any questions and I'll answer what I can.  I don't have potassium problems but they are always checking for it.

The B12 - my dad just had a gasterectomy (sp?  stomach removed) and he has to get B12 injections b/c it won't be absorbed anymore.   Just throwing that out there...


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## Tinker'n'Fun

Potassium - Low just under the required amount, but see red flagged as low
Vitamin D - very low. Has been for a bit, Dr. ignored.
Calcium - within the normal range, but strangly it is increasing at a steady rate even though I am not taking supplements and or consuming more.
TSH - HIGH
T4 free - HIGH (this should be low with a high TSH, right)
Iron - with in range
White count - high with markers for allergies high (tested no allergies found)
ANA - rheumo #'s within normal range as per Dr. I haven't got the copy yet so that is yet to be determined.
B12 - within normal to low with shots

I feel like crap. Tired, bones hurt, cold, vision problems, etc. I know the thyroid levels do a whopper to me, but this is more than normal. I also have fibro, IBS, and cervical disc disease. I am a dr's nightmare. My most recent problem is lower left quadrant pain. Thought it was a kidney stone but nothing showed. Nothing showed for diverticulitis either. So they are treating with just pain pills which I hate. I have Donnatal also for my stomach as the pain is causing nausea and I went 4 days without food.

So now I wait. If the #'s come backed skewed at the end of the month I will insist on a sonogram or whatever test they do to see the parathyroid. It's funny though I went 4 years without a blip in my thyroid levels. Well at least I now know why I haven't had the energy to clean the house....


----------



## cinmell

angelat said:


> I have a question that I thought maybe someone else here might be able to help with. For the past 10 years I've had problems wtih dehydration (dry mouth, eyes, and muscle pain from dehydration) on a day-to-day basis. After I realized that this was an ongoing problem I just upped my water intake. I drink about 40-60 ozs of water at work and then another bottle or two at home at night. I've just learned to live with it all.
> 
> However, last Saturday I woke up to my left eye tearing horribly, by the end of the weekend my eye was also swollen and it hurt pretty bad. It felt like the film over my eye was peeling! Monday I went to an eye doctor (not my usual one b/c they don't take my medical insurance, only my vision insurance) they checked my eye and told me that my problem was that my eyes were EXTREMELY dry. He equated it to having chapped hands, only I have chapped eyes. He mentioned that it could be related to my thyroid problem.
> 
> Tuesday I called my Endocrinologist to let her know what was going on. I left a message anyway. Today I got a call back and she wants to see me on Monday.
> 
> Has anyone else had something like this? If so was it related to your thyroid? Years ago when I first started complaining to my PCP she sent me for bloodwork to check for Sojrens, but that was negative she said. I just want to know what is going on because after 4 days on the drops they gave me my eyes are still not feeling better.
> 
> TIA!!



Well, I was diagnosed with Graves Disease February 2008.  My GYN noticed that my glands felt big at my annual appointment last January and sent me for bloodwork.  She called me when she received the results and said she wanted me to go to and Endocrinologist asap b/c my numbers were very high.  She was able to get me in the next day, otherwise I would had to have waited a couple of months. 

Anyway, my numbers were excessively high according to the Endo, hyperthyriodism.  The Endo asked if anyone ever commented on my eyes or told me I have big eyes.  He mentioned how graves can affect the eye.  After being on the meda for a few months there was no difference in my eyes.  I started using eyedrops during the day and and ointment at night to protect the eyes.  The doctor said is very important to protect the eyes.   He said either use ointment at night or an eye patch to protect the eye from dust getting in them at night when you sleep.  I went with the ointment.  Graves can affect the muscles behind the eye which causes the eye or eyes to look like they are pushed out almost or the lids don't close all the way b/c it causes inflammation around the eye.  My right eye does look bigger and is dry and I can see bits of light when my eye is closed b/c it's not closing all the way.

In September I saw my eye doctor but she referred me to an Ocuplastics Surgeon b/c I guess they specialize in this area.  The doctor said I had a mild case and that the eye would go back to normal when my numbers were worked out.

However, I was taken off my thyroid meds 2 weeks ago b/c the numbers finally started to come down in October and have been normal for a bit now but my eye is still big I guess you could say.  It gets dry, still tears and if I don't use the ointment before I go to bed I get the blurry feeling in the morning, almost like there is a film over the eye.  My eye is itchy and dry so I carry drops with me all the time now.  I have a follow up appt. with the Ocuplastics Surgeon in 2 weeks.  I'm a little concerned b/c even though the thyroid issue seems be calm now and under control, I don't notice any difference in the eye and I have had several people comment on my eye!


----------



## Christine

cinmell,

It is my understanding that with Grave's, even if you get the thyroid numbers regulated, you can still have eye problems.  As I'm sure you know, Grave's is a specific autoimmune disorder and, while getting the thyroid numbers correct, the Grave's is still there doing its damage.  

For instance, I am supposed to be kept hyperthyroid all the time due to thyroid cancer.  My doctor told me that I will never have the eye issues because they aren't caused specifically by hyperthyroidism, only by having Grave's.     I'm not really sure how it works but I swear someone told me this.

I do have terrible dry eyes that started about 6 years ago (my thyroid cancer was 14 years ago).  I had all sorts of test for autoimmune but everything was ruled out.  I simply have "dry eye" with ocular rosacea.  I use Restasis and it has me almost normal.  I have a hard time driving without some sort of covering over my eyes if I have the heater or AC on in the car.  I just can't do it.  But other than that, I'm pretty good.  I will have bouts of severe itching or swelling but I can get it under control by upping the Restasis for a few days.

When it first happened to me, though, it was just sooooo bad.  My eyes were so bad that my eyelids would sort of droop because they would get stuck and not open fully.  Gosh, it was painful.


----------



## Christine

Tinker'n'Fun said:


> I feel like crap. Tired, bones hurt, cold, vision problems, etc. I know the thyroid levels do a whopper to me, but this is more than normal. I also have fibro, IBS, and cervical disc disease. I am a dr's nightmare. My most recent problem is lower left quadrant pain. Thought it was a kidney stone but nothing showed. Nothing showed for diverticulitis either. So they are treating with just pain pills which I hate. I have Donnatal also for my stomach as the pain is causing nausea and I went 4 days without food.




I know it's not proven yet but they are finding that chronic low Vitamin D is the cause for chronic pain and even suspect that it might be *the* factor in fibromyalgia in some patients.

Have you seriously looked into getting those levels up?

I also wanted to add, have you visited the Thyroid Issues board on www.healthboards.com?  They have some very knowledgeable folks over there who have pretty much seen it all.  You might want to go over there and read and post your story/lab values, etc. if you haven't already.  I don't hang out there much at all because there are very few thyroid cancer postings, but they definitely have some interesting things going on.


----------



## Tinker'n'Fun

Christine said:


> I know it's not proven yet but they are finding that chronic low Vitamin D is the cause for chronic pain and even suspect that it might be *the* factor in fibromyalgia in some patients.
> 
> Have you seriously looked into getting those levels up?
> 
> I also wanted to add, have you visited the Thyroid Issues board on www.healthboards.com?  They have some very knowledgeable folks over there who have pretty much seen it all.  You might want to go over there and read and post your story/lab values, etc. if you haven't already.  I don't hang out there much at all because there are very few thyroid cancer postings, but they definitely have some interesting things going on.




Thanks for the site, I will check it out. The Dr' put me on a 4 week high dose Vitamin D. I only take one pill per week. Then at the end of the month they will recheck my levels. I will be put back on the high dose and or a daily dose. IF it does not work, they will start testing, from top to bottom.


----------



## teacups

Does anyone know if Armour Thyroid is still safe to take considering this swine flu situation?  I cant find any info online. Has anyone heard anything about this?  Thanks for any information.


----------



## SeansMom

teacups said:


> Does anyone know if Armour Thyroid is still safe to take considering this swine flu situation?  I cant find any info online. Has anyone heard anything about this?  Thanks for any information.




Yes, it's safe.  As is pork and, thank god, bacon.  

My question:

My N.D. just moved me from Synthroid to Armour like Westhroid.  I'm having a NOT good time with it.  I think it made me hyper (fast pulse, breathlessness, and sleep issues) but when I decreased it I feel tired again and other low thyroid symptoms.  Anybody else have a hard time adjusting to Armour?  And is it really worth it???


----------



## angelat

So, just an update. I got a second opinion from a reputable ophthalmologist and found out I DON:T have dry eyes. My eyes were simply inflamed. I say simply, but it wasnt at all simple. Six weeks I went before I could wear my contacts again! This past weekend I had a flare up of swelling again. I was still able to wear my contacts, but above and below my eyes were quite swollen. It looked like I was in a fight. I had a follow up with my Endo on Tuesday. She did the tests for Chvostek's and Trousseau's Signs which were both positive. She feels that I have Calcium deficiency as well as Vitamin D deficiency. She is assuming that the eye problem is simply a result of my thyroid. My TSH crept back up to 3.93 so she upped my dosage. Its not high but I feel like crap. Ive been taking 50,000 IUs of Vitamin D every two weeks for 6 weeks now. She asked me to start Calcium in addition to my multivitamin and Ill have blood work to check everything in July. 
I spoke with my pharmacist and she said that Vitamin D deficiency isnt something they see/hear much of when dispensing medications. Usually Vitamin D is prescribed when bone loss is found in post-menopausal women. So, I wonder what the instance of Vit D deficiency is in younger women??? I just want to know why Im having all of these issues. I know it comes with getting older, but Im only 33. Is this really normal???


----------



## jennz

angelat - omg about your eyes!  I am having the same problem...it's horrible!  I'm working right now but had to post quickly, I'm going to go back and read your posts and answer later today...


----------



## jennz

angelat said:


> She did the tests for Chvostek's and Trousseau's Signs which were both positive. She feels that I have Calcium deficiency as well as Vitamin D deficiency.



I am also hypocalcemic, due to my parathyroids being damaged and not recovering during my thyroid surgeries.  My body doesn't make calcium any more so I have to take a lot of supplements.  I also have to take a prescription of a synthetic vitamin D to absorb the calcium.  If you do have a D deficiency maybe you're not absorbing the calcium you need...just a thought...


----------



## jennz

update:  my levels came back today and my vitamin D is very low...they called in a prescription, the 1 pill/week for 8 weeks.  Also my "sed" levels are high...off to google that one!


----------



## frdeb1999

My DH had his thyroid removed 18 months ago. He started having jaw tremor problems shortly after....and they are slowly happening more. It does'nt hurt him...just embarassing for him as he never knows when it will happen.  Had a MRI and it showed absolutely nothing. His surgeon said he has never had any nerve issue's like this in patients....although I don't know if I believe this. He is doing very well otherwise. Just wondering if anyone else has had issue's like this?


----------



## lizbaby007

My story-

For years after a severe upper respriratory infection when I was 23 (that nearly killed me!) I suffered from an increased pulse rate - 130 at rest -  heart palpitations and shortness of breath. Of course the first thing checked was my thyroid. Blood work came back borderline hypo to normal. Upscan was normal. Was told I needed to work out....m'kay.

4 years later, still suffering the palpitations (although heart rate now only 112 at rest, yeah!) I developed a new symptom. A huge goiter. I didnt have insurance at first but after a couple of months with the thing getting larger and larger I went to the local charity(?) hospital. $2500 later and 18hrs of sitting in a hard plastic chair. I was told my bloodwork showed I was borderline hypo (duh I told you that dr, remember?) and that I just had a severe case of tonsilitis. Given antibiotics and told to come back in a week if it didn't clear up. Well it didn't and I went back and was told it was now a muscle tear. Ummmm, okay. Strange that my neck muscles would spontaneously tear but whatever your the doc. 

6months later I had learnt to deal with this new symptom and had just gone on with life. I then got insurance and decided to see a new Dr. He immediately told me that it was my Thyroid. That I was most certainly HYPER-thyroid and that they would kill it with radiation and the likes and I would be good as new and feeling better than ever. He started me on a low dose of levothyroxine to alleviate the goiter. 1 week later I got a call from his office saying I WAS NOT hyper but hypo...I must have flip flopped. I told them that I had always been borderline hypo (since the very beginning) and doubted I was ever hyper. In any case my thyroid pill was upped and I was told in 6months to a year I would be good as new.

It has been a year and a half and I feel worse now then I ever did. About a month and a half ago my endo upped me to 88mcg as he was concerned that my goiter was coming back even though my thyroid levels tested normal. I told him that every time he upped it, I felt like I was comatose. He told me to take the pill at night instead of morning. Since that time I have slept 10-12 hrs a night and apon waking find myself falling asleep throughout the day. I have no energy. I get numbness and tingling feeling in my arms and legs. I have a throbbing pain in my neck where my thyroid is located. The worst part is over the past year, I have developed a sever abdominal pain. It starts about 2hrs after taking my medicine and gets worse throughout the day to the point I have diffuculty breathing. And forget eating. How can you with a brick like feeling just under your ribs with stabbing pain?? Prilosec and then aciphex use to work for the pain, but no longer. This last time it was so intense I honestly thought I was going to die.

So I went to a new Dr who ran a host of tests...all normal. Says thyroid is normal. I explained it always has showed normal. Even before starting medicine. In any case, I stopped taking my Thyroid pill altogether. Yes thats right I went from 88mcg to nothing. On the second day it was like an awakening. I felt better than I felt in 6 years!! I was mentally alert, went to bed normally and awoke refreshed 7hrs later. Worked in the yard, ate normally with no stomach pain. By the third day though, I was having heart palpitations and swelling in my neck again. So I took a 1/2 of my 88mcg pill. Stomach started hurting a little but nowhere near the pain it has been. I called the Dr and told him and he said for now he would like me to take a 25mcg dosage. See how the stomach pain goes and see if my thyroid levels stay normal (although I am really not trusting that at all!) 

So I am on another 3month wait/journey to see if this will finally be the answer for me. At times I have wondered if it was ever really my thyroid and not something else that was causing the fast heartrate and shortness of breath (since that was signs of hyper not hypo like I always tested for). In any case I certainly feel everyones pain and can only hope that answers come to us all


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## Eeyores Butterfly

Hi! I've not posted here before, but I was hoping you all could answer some questions for me:

My mom has had thyroid issues for a very long time. She had surgery to remove a goiter in 1986. Since then she has been on thyroid meds, but if it's enough of a dose to stop it from growing she is absolutely miserable. If they put it where she feels better, it doesn't stop it from growing. Her doc has discovered more goiters and tests for atypical cells are inconclusive so she has to have it removed on July 8.

Has anybody ever had a test come up inconclusive? What was the result? 

The other question I have is about family risk? It seems like every time I sneeze I get tested for thyroid function "because of family history". So far they have always been normal. Does anybody know what the risk is if you have an immediate family member with thyroid problems?


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## KAMLEM

I had a nodule on my thryroid so they did 2 needle biopsies that were both inconclusive.  I had surgery to remove the nodule, so at that point they took out half of my thyroid and while I was under anesthesia they had it tested and it came out benign.  A week later they told me that after doing some further tests it was cancerous so I had to go back in to have the other half taken out.

My great grandmother and my mother both had thyroid disease so it definitely runs in my family.  My endocrinologist said it's very hereditary, especially with women, so you should stay on top it it if you believe you may have any issues.

Good luck with your Mom.  My surgeries were both very easy.  The surgery was at 7:30 a.m. and I was back home by noon both times.  I had almost no pain at all.


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## DisMomme

Hi All,
back in December I had 1/2 my thyroid removed due to a benign nodule (the fine needle biopsy had come back inconclusive).  I had blood work done 6 weeks later and it came back normal.  Last month I went in to the ENT for a follow-up.  Everything looked good.  Come back in 1 year for another ultrasound. (I have another nodule on the left side - too small to biopsy)

I happened to mention how tired I have been lately and that I have gained 10 pounds in about a month.  He ordered another blood lab.  I called the office back Friday and they had called in a prescription for a small amount of synthriod (.5 mcg).  The nurse said the doctor wanted me to start taking it before the weekend and I will go for another lab in 6 more weeks.  

She said my TSH levels were low but that everything else looked fine.  I have no idea what that means.  I have requested lab results to be sent to me as well as the Dr but never got them.  I don't know what the levels are so I cannot even google it to see what is protocol.


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## Christine

DisMomme said:


> Hi All,
> back in December I had 1/2 my thyroid removed due to a benign nodule (the fine needle biopsy had come back inconclusive).  I had blood work done 6 weeks later and it came back normal.  Last month I went in to the ENT for a follow-up.  Everything looked good.  Come back in 1 year for another ultrasound. (I have another nodule on the left side - too small to biopsy)
> 
> I happened to mention how tired I have been lately and that I have gained 10 pounds in about a month.  He ordered another blood lab.  I called the office back Friday and they had called in a prescription for a small amount of synthriod (.5 mcg).  The nurse said the doctor wanted me to start taking it before the weekend and I will go for another lab in 6 more weeks.
> 
> She said my TSH levels were low but that everything else looked fine.  I have no idea what that means.  I have requested lab results to be sent to me as well as the Dr but never got them.  I don't know what the levels are so I cannot even google it to see what is protocol.



When TSH levels are "low" it actually means that you are taking too much thyroid hormone (I know that sounds backwards).  TSH is not a thyroid hormone itself--it is Thyroid Stimulating Hormone.  If you don't have enough thyroid hormone in your body, your TSH will rise (go higher) in an attempt to drive your thyroid gland to produce more.  If you take thyroid hormone, the TSH (which comes from the pituitary gland) relaxes and it drops down and goes "low."  So, low TSH equals that you have more than enough thyroid hormone.


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## luckymom4

I'm hypo. Had a growth last lear which turned out to me liquid, not fibroid. I had it aspirated last June 9th. Now I have another one in almost the same spot. These things have grown really fast, from nothing there at all to very large growths within a few weeks. The last one was so big I didn't even have that "hollow" spot at the bottom of my neck. When I get these I find that I get tired even more easily than usual. I have to clear my throat a lot and if I talk for more than a few minutes at a time I get a sore throat. The good thing is that after the last one was aspirated my hypo is pretty easy to control with just healthy lifestyle changes. So I'm hoping this one goes as well. The only bad thing is I have no health insurance, but luckily it's not _too expensive._


----------



## DisMomme

Christine said:


> When TSH levels are "low" it actually means that you are taking too much thyroid hormone (I know that sounds backwards).  TSH is not a thyroid hormone itself--it is Thyroid Stimulating Hormone.  If you don't have enough thyroid hormone in your body, your TSH will rise (go higher) in an attempt to drive your thyroid gland to produce more.  If you take thyroid hormone, the TSH (which comes from the pituitary gland) relaxes and it drops down and goes "low."  So, low TSH equals that you have more than enough thyroid hormone.



Thank you for the clarification.  I actually went to my GP for an checkup and mentioned this to her as well.  She was able to look up the lab results.  My TSH was high, although only slightly.  I think she said it was in the 6s? 

I mentioned to her about the weight gain and tiredness.  She doesn't think it is thyroid related.  Any insight on that would be helpful.  Thanks.


----------



## Christine

DisMomme said:


> Thank you for the clarification.  I actually went to my GP for an checkup and mentioned this to her as well.  She was able to look up the lab results.  My TSH was high, although only slightly.  I think she said it was in the 6s?
> 
> I mentioned to her about the weight gain and tiredness.  She doesn't think it is thyroid related.  Any insight on that would be helpful.  Thanks.



Okay, so if your TSH is in the "6" range, you are officially hypo.  Generally, anything over a 3.4 is now considered hypo (used to be around 5.0).  

As to whether it is causing your symptoms--probably.  It is truly a Your Mileage May Vary situation.  I, personally, don't feel bad at all when my TSH is around 6 nor do I gain weight.  I generally have to get to the teens before I start to feel "off".  But many other people will feel differently. 

For instance, because of my past history of thyroid cancer, my doctors would like me to be hyperthyroid.  But I don't tolerate it well.  I really can't get my TSH below 0.9 or I start to feel bad.  But other people can get closer to 0 and feel perfectly fine.  I do better at a higher TSH.


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## KAMLEM

DisMomme said:


> Thank you for the clarification. I actually went to my GP for an checkup and mentioned this to her as well. She was able to look up the lab results. My TSH was high, although only slightly. I think she said it was in the 6s?
> 
> I mentioned to her about the weight gain and tiredness. She doesn't think it is thyroid related. Any insight on that would be helpful. Thanks.


I'm not a doctor, but I would disagree with this based on my personal experience. When my TSH is at 6 I feel miserable. Mine needs to be close to 1 to feel good, but like Christine I cannot tolerate being hyper. It's such a fine balance.


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## DisMomme

It is a fine balance.  I have a feeling that my ENT and GP are going by the 5.0 is normal when 3.4 is now the accepted norm.  I will have my next round of blood tests done but then I will ask to see an Endo if my levels aren't lower.  Thanks for the info!


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## rainydayplay

Hi!  I just found this board and thought I'd introduce myself.

I was diagnosed with mitral valve prolapse (trust me..it's relevant!) in Feb of 2002.  I've been on meds ever since for that to control heart palpitations.

In August of 2003, my father RAI treatment for his Graves Disease.  He had gotten to the point that he constantly had the shakes.  They were starting to think he had Parkinson's or something like that -- they didn't suspect the thyroid because he didn't have any change in weight.

So, I started doing some internet research about Graves Disease, and I saw that Graves can cause Mitral Valve Prolapse.  I made an appointment with my GP, who said that it doesn't work backwards, but, if I had family members who had thyroid problems, I needed to be tested too.

The results?  She said my TSH was low but still normal..and she was concerned about the presence of Lupus antibodies.  A month later, I was officially hypothyroid, with a 7 pound unexplained weight gain to boot.

Unfortunately, immediately afterwards, I quit my job (bye-bye insurance!) then found out I was pregnant.  The nurses I saw while I was pregnant were not concerned at all with my hypothyroidism, so I went pretty much my entire pregnancy without medication.  

When I finally had insurance again in late 2006, I found a new GP and got back on medication.  When it was finally worked out, I was on 75mcg.

That October, I had gotten myself into an exercise routine.  I was feeling a lot better -- more energetic, happier, etc.  January 2007, though...I felt like I'd shut down.  I couldn't drag myself out of bed early enough to exercise (I did manage to get to work, though)  I had 0 energy -- even taking every available opportunity to sit at work (I'm a teacher, and sitting is generally a no-no when there are students in the room).  

Of course, my GP was not concerned.  He actually seemed to act as though I was a woman and was just complaining because that's what women do.

In March 2007, I thought I felt something in my throat, as though my thyroid were growing.  I didn't ask about it until April, and my GP sent me for an ultrasound.  It took 2 weeks to get results..then all I got was "The ultrasound shows several nodes of different sizes.  We're sending you to an endocrinologist to make sure it isn't cancer or anything."  And, of course, it took a month to get in to see the endo.

When I described everything to the endo, he said, "Well, that sounds like classic Hashimoto's Thyroiditis."  Even when I told him about the tiredness, he asked, "Did it feel like you were just coming off the flu?"  And that was the best way to describe it -- since I wasn't "sick", I didn't think about making that connection for how I felt.

A year later, my endo got an ultrasound machine and said he'd use me to do his training.  He'd never gotten the results from the previous ultrasound (even though he called and faxed requests for it).  I got to see as he examined, and he described what it would look like if one were "hot" (potentially cancerous).  There were definitely a lot of nodules, but none were hot.  He said, "This is exactly what a textbook Hashimoto's thyroid looks like.  Why didn't anyone just tell you that's what you had?  Or why didn't they just say from the first ultrasound that it was an obvious case of Hashimoto's?"

My level today is a little over 2 (I think the last one said 2.34), and I guess that seems to be normal, even though I still feel tired most of the time and have periods of weight gain where I don't change anything about eating or exercise habits but I just gain weight...then it seems like I can't do anything for it to go away.   

Oh, and if you're wondering, yes I did quit going to that GP.


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## SeansMom

rainydayplay said:


> Hi!  I just found this board and thought I'd introduce myself.
> 
> I was diagnosed with mitral valve prolapse (trust me..it's relevant!) in Feb of 2002.  I've been on meds ever since for that to control heart palpitations.
> 
> In August of 2003, my father RAI treatment for his Graves Disease.  He had gotten to the point that he constantly had the shakes.  They were starting to think he had Parkinson's or something like that -- they didn't suspect the thyroid because he didn't have any change in weight.
> 
> So, I started doing some internet research about Graves Disease, and I saw that Graves can cause Mitral Valve Prolapse.  I made an appointment with my GP, who said that it doesn't work backwards, but, if I had family members who had thyroid problems, I needed to be tested too.
> 
> The results?  She said my TSH was low but still normal..and she was concerned about the presence of Lupus antibodies.  A month later, I was officially hypothyroid, with a 7 pound unexplained weight gain to boot.
> 
> Unfortunately, immediately afterwards, I quit my job (bye-bye insurance!) then found out I was pregnant.  The nurses I saw while I was pregnant were not concerned at all with my hypothyroidism, so I went pretty much my entire pregnancy without medication.
> 
> When I finally had insurance again in late 2006, I found a new GP and got back on medication.  When it was finally worked out, I was on 75mcg.
> 
> That October, I had gotten myself into an exercise routine.  I was feeling a lot better -- more energetic, happier, etc.  January 2007, though...I felt like I'd shut down.  I couldn't drag myself out of bed early enough to exercise (I did manage to get to work, though)  I had 0 energy -- even taking every available opportunity to sit at work (I'm a teacher, and sitting is generally a no-no when there are students in the room).
> 
> Of course, my GP was not concerned.  He actually seemed to act as though I was a woman and was just complaining because that's what women do.
> 
> In March 2007, I thought I felt something in my throat, as though my thyroid were growing.  I didn't ask about it until April, and my GP sent me for an ultrasound.  It took 2 weeks to get results..then all I got was "The ultrasound shows several nodes of different sizes.  We're sending you to an endocrinologist to make sure it isn't cancer or anything."  And, of course, it took a month to get in to see the endo.
> 
> When I described everything to the endo, he said, "Well, that sounds like classic Hashimoto's Thyroiditis."  Even when I told him about the tiredness, he asked, "Did it feel like you were just coming off the flu?"  And that was the best way to describe it -- since I wasn't "sick", I didn't think about making that connection for how I felt.
> 
> A year later, my endo got an ultrasound machine and said he'd use me to do his training.  He'd never gotten the results from the previous ultrasound (even though he called and faxed requests for it).  I got to see as he examined, and he described what it would look like if one were "hot" (potentially cancerous).  There were definitely a lot of nodules, but none were hot.  He said, "This is exactly what a textbook Hashimoto's thyroid looks like.  Why didn't anyone just tell you that's what you had?  Or why didn't they just say from the first ultrasound that it was an obvious case of Hashimoto's?"
> 
> My level today is a little over 2 (I think the last one said 2.34), and I guess that seems to be normal, even though I still feel tired most of the time and have periods of weight gain where I don't change anything about eating or exercise habits but I just gain weight...then it seems like I can't do anything for it to go away.
> 
> Oh, and if you're wondering, yes I did quit going to that GP.



Thanksk for sharing.  In that  "misery loves company" way it's great to know other's have issues with their Hashimoto's.  Sometimes I feel pretty alone with it.   I just switched meds, which ended up being a bad thing for me:  My TSH was .96 in April, and by mid-June it was 17.9.  Yep.  No wonder I was crashing by 3:00 pm, losing hair by the fistfuls, sore & achy joints, and gaining weight with no dietary changes.  I was also emotional for no reason at all.  Yuck!  I just had my TSH drawn again yesterday after returning to my previous drug and dosage.  It just makes me frustrated that I have times that are just wasted...it just drifts by me when I feel so badly.  Kind of like wading through mud every day just to do the things that have to be done.


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## ElizK

just found this thread after creating a thread with my question, but I'd like to post it here anyway:



> Ever had an allergic reaction to Levothyroxine? I've been having rash/hives randomly show up, mostly on my arms. This has been going on for MONTHS, maybe as long as a year. I usually slather some Benadryl gel on the offending area and go along with my life. It was really bothering me today, so I started checking around and discovered it could well be my thyroid medication! It could just be stress, too, but how do I figure out which one???
> 
> I'll call my doctor tomorrow, but I'm just wondering if anyone else has had this problem, and what medication you were switched to, and what the cost difference was. I just had a 3 month supply filled at the pharmacy! Oh, well. I'm ready for this to STOP!!!



For a little background, I was diagnosed a little under 2 years ago as "sub-clinical hypothyroid", with a TSH of 3.6, a year later it was 3.4, 6 weeks after that it was 4.6 after my medication was adjusted.  At last check it was 3.3.  I'd like to get it lower (because of all the wretched symptoms, namely always being cold and the weight gain).  I am taking levothyroxine 25mcg.


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## DisMomme

I don't think I'm going to like this journey of getting the right dosage of synthroid.  I am on 50mcg of Levothyroxine.  This was the first dose prescribed.  The ENT told me to wait 6 weeks and have my blood tested again.  Do I have to wait 6 weeks for it to metabolize in my system?  I had a blood draw after my surgery at exactly 6 weeks and all was normal, 3 months later my TSH was 6.4 and I was basically useless.  The last week of school we had field trips planned all week and I was exhausted trying to keep up.

I know that the 50 mcg is not working because I don't really feel any different (been on it for a little over 4 weeks).  My memory is mush and I'm gaining weight while keeping a food diary and trying to lose.  My muscles ache, the only upside to that is I see a chiropractor every other week and get a massage and adjustment which helps.

I'm also worried about the left remaining side of my thyroid.  Last Dec. when I had the surgery the nodule on the left side was too small to even biopsy.  A couple weeks ago when I visited my PCP, she said she could now feel the nodule.  Will this mean more surgery?  I am scheduled for a follow-up ultrasound in Nov.  Should I call to move it up?  

Any help or insight about this roller-coaster ride would be appreciated.


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## KAMLEM

I just went for my one year follow-up after having my thyroid completely removed.  Dr. said that there is some thyroid tissue that's showing up on the ultrasound so she wants to keep an eye on it.  Has anyone had this happen?  I'm not sure if it's something that they missed the first time or if it actually grew back (if that's even possible).  I have to go back for a repeat ultrasound in 4 months.  I can't stand the fact that I'm going to have this hanging over me for that long.


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## Christine

KAMLEM said:


> I just went for my one year follow-up after having my thyroid completely removed.  Dr. said that there is some thyroid tissue that's showing up on the ultrasound so she wants to keep an eye on it.  Has anyone had this happen?  I'm not sure if it's something that they missed the first time or if it actually grew back (if that's even possible).  I have to go back for a repeat ultrasound in 4 months.  I can't stand the fact that I'm going to have this hanging over me for that long.



Did you have thyroid cancer?

The thyroid does not grow back.  The only thing that can grow back is a cancer, unfortunately, so if there has been regrowth, it would not be normal thyroid tissue.

Having said that bit of cheery news, when a thyroidectomy is done a surgeon cannot possibly get every bit of thyroid tissue.  They actually leave a tiny bit behind to make follow up RAI treatment more effective.  

Again, I don't know if you had/have thyroid cancer but it would not be normal to "watch" this tissue via using only ultrasound.  If your gland was non-cancerous then this may be standard procedure.


----------



## KAMLEM

I did have cancer.  I didn't have the RAI treatment because when they did the body scan they said there was no tissue left to treat.  I thought this was all done and over with, I should have known it wouldn't be so easy.


----------



## Christine

KAMLEM said:


> I did have cancer.  I didn't have the RAI treatment because when they did the body scan they said there was no tissue left to treat.  I thought this was all done and over with, I should have known it wouldn't be so easy.



Hmmmm....that's VERY interesting.  I really do not like to criticize the medical care others receive but, having been a part of the thyca support list for 10 years I have *never* heard of any patient being told there was no thyroid tissue left to treat.  Personally, I was told that a surgeon can NEVER get all the thyroid tissue out, hence the need for RAI treatment after surgery unless the cancer is in the millimeter size.

If you don't have follow up RAI you cannot be successfully followed up with thyroglobulin tests or anything.  The ultrasound isn't really able to tell what is in your neck.

I will be blunt with you--I think you should seek a second opinion.  You are a thyroid cancer patient.  You had known thyroid cancer in your neck.  ANY kind of growth at this point should never be watched and I also believe you should have RAI treatment.  

Have you participated in the thyca group online?  It wasn't until I started going to support groups that I realized that my initial treatment was not optimal which caused me problems a few years after surgery.


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## luvmarypoppins

So christine are you there (sorry about your crummy week end, hope today was better), anyone else too that has thyroid cancer, did you have any problems post surgery with controlling your body temperature? My synthroid is 200 and I am either sweating hot or freezing cold. Mostly I wake up hot, not a night sweat like menopause, just hot, and then it alternates.  just had more blood tests and am going to the endo for a check up on thurs.


Christine, just wondering about your other comment, how the ultrasound cannot see what is in your neck. I am suppose to have one in the fall. The endo says its routine procedure after the ca surgery etc. So if its not such a definitive test, then why are they doing it etc? They even told me the blood tests with a higher raised level would be a better indicator before the lymph nodes started popping out on my neck again etc.


----------



## Christine

luvmarypoppins said:


> So christine are you there (sorry about your crummy week end, hope today was better), anyone else too that has thyroid cancer, did you have any problems post surgery with controlling your body temperature? My synthroid is 200 and I am either sweating hot or freezing cold. Mostly I wake up hot, not a night sweat like menopause, just hot, and then it alternates.  just had more blood tests and am going to the endo for a check up on thurs.
> 
> 
> Christine, just wondering about your other comment, how the ultrasound cannot see what is in your neck. I am suppose to have one in the fall. The endo says its routine procedure after the ca surgery etc. So if its not such a definitive test, then why are they doing it etc? They even told me the blood tests with a higher raised level would be a better indicator before the lymph nodes started popping out on my neck again etc.




I had a lot of issues with regulation following my surgery and starting Synthroid.  When you have your thyroid gland unceremoniously ripped out of your neck  you tend to get on a hormonal roller coaster.  It has been 14 years for me (August 1st was my *anniversary*) so it is hard to remember.  I just remember feeling really odd for about 6 months.  Sometimes I felt like I was buzzing or jittery or jerky, other times very cold.  I remember feeling hot a lot after RAI (for weeks/months).  The very first time my Synthroid dose was too high I would get terrible face/ear flushing episodses at work.  

For the most part that has evened out, although, now I am entering perimenopause and I get a lot of weird stuff going on.

I also don't mean to confuse anyone about the ultrasounds.  It is a very useful tool in following up for thyroid cancer.  They weren't even doing them as follow up when I was first diagnosed and I only just had my first one 6 months ago!!!  You must remember that not ONE test for thyroid cancer is perfect.  The thyroglobulin blood test (tumor marker) can give false negatives in some people, the RAI diagnostic scan and give false "clean" scans in some people, and certainly an ultrasound can "see" everything in your neck but it cannot tell if what it sees is cancer or something normal the surgeon left behind.  Having *all* the tests together gives a patient the best diagnostic procedure.

My concern with Kamlem's situation is that she did not have "clean up" RAI after surgery and from her information in her post it sounded like the doctor might only be following her with ultrasound.  In my VERY non-medical opinion (and I want to be clear about that), it isn't the norm for what I hear of most thyroid cancer patients.  I've always been told that if you do not have RAI following surgery, it is very hard to follow up with scans, bloodwork, and other diagnostic tests because you never get a totally cleared out neck.  The ultrasound of course is valuable as you continue to compare the different ones with the baseline done right after surgery.  I sure hope I didn't scare her off!!  I hate being negative about this stuff sometimes but I really feel, at least when it comes to thyroid cancer, that it is important to give out my honest thoughts on what people are going through.  This is one situation where too much of trying to be polite might not help someone to ask their doctor questions.


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## IMALOVNDISNEY

I have been lurking on this thread for a very long time.  Think I have even posted a couple of times.  But, now I need some in put from all your experiences. 
My history.  I was dx'd at the age of 21 with hypo thyroid (25 yrs. ago).  Was placed on Synthoid and just moved forward.  Well I have to be honest, I wasn't very good with taking my meds nor with my blood work.  Never though it was all that important.  No one ever explained just how important my thyroid was.  I know now that my thyroid was the reason that I had 4 failed pregnancies.  Several years ago I was told that my THS levels were way to high and was given the radio active pill to slow it down. (don't remember the levels) Things seem to go well for awhile.  Almost 5 years ago my THS levels were to high again. How it was explained to me was my thyroid should have been pumping out hormone a rate of 30-35 and mine was pumping at almost 80.  This was causing my entire body and brain to misfire.  I couldn't remember how to get home.  I couldn't carry on a normal conversation.  I would forget the simplest things like how to pick up the phone when it rang. Or how to tie my shoes.  I even got lost once on my way home from work.  Again, I was given the radi pill and told this with synthroid all would be good. 
Oh and at the same time I was told I had early stages of MS. 

Well fast forward to the last few months.  I have been feeling sluggish, always tired.  I'm always in a fog and can sleep at the drop of a hat. And my migraines were getting worse and sticking around almost 24/7. I have had migraines since I was 4, but, these were different. It felt like my brain was pushing on my scull and was going to push out my ears. ( this is exactly how I explained it to my PCP). The pressure in my head is intense. Went to my PCP last Wednesday was given RX for prednisone 40mgs 1x day for 5 days. Ordered an MRI  of the brain to see if there were any changes in my lessions. And ordered fasting blood work for today. The prednisone seemed to diminish the migraines but didn't take them away.  
Well I just got off the phone with my PCP and he said my lessions haven't changes but, my THS levels should be under 4 and the were over 50..He said this is what is causing my migraines and my thought prosses turning to mush again. 
I asked out right if this could be or could turn cancer.  His answer was no. 

Here is where you all come in to play.  Am I right in thinking this shouldn't keep happening?  I know I should be more educated on all of this, but, I'm not and have just kind of gone with the flow and never really taken it all that seriously.  I have to be honest, I'm starting to scare myself with all the what nows. 
I forgot to mention, I have seen an Endo.  But, my PCP seems to take things alot more seriously then the Endo. I trust my PCP with my life. The Endo is more interested in what my ins. company will or will not pay for.  And he was always well let's just wait and see. 

Any help at this point would be greatly appreciated.


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## Christine

IMALOVINDISNEY--

I'll try my best to explain what I think happened to you.

First off, I want to explain what TSH is.  It is Thyroid Stimulating Hormone.  It is a hormone made by the pituitary gland in your brain.  It is not an actual thyroid hormone but its measurement is a reflection of how well your thyroid is working.  Think of your thyroid gland as a horse and think of the pituitary gland as the rider/driver/jockey of the horse.  If the horse (thyroid) slows down, the jockey chides the horse/whips the horse (i.e., produces more TSH) to get the horse (thyroid moving).  If the horse (thyroid) is galloping, the jockey will slow the horse down by pulling back on the reins (stopping TSH altogether).

So, the summary of that comparison is:

If your thyroid is pushiing out too much hormone, your pituitary gland stops stimulating it in an attempt to slow it down.  This equals a very LOW TSH. Hyperthyroidism can cause some people to have a TSH measurement of 0.

When your thyroid gland is sluggish, the pituitary gland pumps out a lot of TSH to try to stimulate the gland so if you are HYPOthyroid (low) then your TSH will be high.

LOW TSH = HIGH THYROID or HYPERTHYROIDSISM
HIGH TSH = LOW THYROID or HYPOTHYROIDISM

It sounds to me that in your younger days, you were hyperthyroid.  That is the ONLY reason they would have given you the RAI pill--to try to destroy your gland so you would stop putting out so much hormone.

It looks as though after your second RAI, it really work and now your thyroid is dead; hence, the TSH reading of 50.  You are fairly severely hypothyroid.  No wonder you feel awful.

You need to definitely take your Synthroid and you will feel better once you get your TSH down to around 2.0.  Which is the ideal TSH for pregnancies I am told.


----------



## Terri5176

Hello - 


I've been reading this thread - with alot of interest.   I believe I've got some sort of thyroid issue, and am waiting for my doctor's appointment to talk about it.

I'm 50 (ouch) and have been menopausal for quite a while.   I had my symptoms under control with an OTC med - Estroven.   Then - it seemed - overnight my symptoms went crazy.   I have hot flashes continually.   Not night sweats - but waking up HOT.   When I'm not dying of the heat - I am ice cold.   

My weight has gone crazy - that seemed to happen overnight as well.   I added 30 pounds with no effort.   I'm trying to get rid of it - working out 4 - 5 days a week, 2 - 2/2 hours each time.   No change, in fact I continue to gain.   I'm training for half marathons - completed one in June, have a few more scheduled this year, then Goofy in January.   I do okay, but the hot flashes are really tough during exercise.

My eyesight is horrible, my hair is thinning, and I ACHE.   I can't remember anything anymore.   

My mother had benign tumors on her thyroid - it was removed (this was in 1963?) and was on meds from then on.   (side note - Synthroid never worked right for her - she had a cow based replacement?)   

It's hard - I don't know how much of this is due to menopause, and how much is due to something else.   I'm tired of people looking at me like I eat too much.....



Terri


----------



## Christine

Teri,

Have you had a thyroid panel (bloodwork) done.  Many/most of your symptoms for sure can be attributed to perimenopausal stuff that just gets worse and worse until you actual go through meno.  My mother had a ROUGH time and many women I know have exactly the same issues as you.   An aquaintance I have has been struggling for 2 years now and finally had to go on prescription HRT because her quality of life was so impacted.

The weight gain (especially through the abdomen) seems to be normal.  My mom really packed on the pounds and has a very hard time shedding them.  I have read that a low-carb diet works particularly well for the menopausal weight gain.

I would not rule out thyroid and it's easy enough to check if it is contributing to your issues.  

Your mom was probably taking Armour Thyroid which is made from dessicated pig thyroids.  I do think some older medicines were made from cows.


----------



## Terri5176

Hi Christine - 


I had a panel done probably 5 - 6 years ago, and was told I was "borderline" hypo.   

I struggle with the idea of HRT too - but I guess that's just me.  I couldn't take the pill because of the effect it had on my mood.   (the last time I tried - to help with severe pain - I ended up screaming at my boss....).   But I'v reached the point that I can't take any of this too much longer....

The reason I'm thinking thyroid is a "feeling" that there's something in my throat?   Not that it's difficult to swallow, just that there's something "there".   



Does that make any sense?



Thanks - 


Terri


----------



## Christine

Terri5176 said:


> Hi Christine -
> 
> 
> I had a panel done probably 5 - 6 years ago, and was told I was "borderline" hypo.
> 
> I struggle with the idea of HRT too - but I guess that's just me.  I couldn't take the pill because of the effect it had on my mood.   (the last time I tried - to help with severe pain - I ended up screaming at my boss....).   But I'v reached the point that I can't take any of this too much longer....
> 
> The reason I'm thinking thyroid is a "feeling" that there's something in my throat?   Not that it's difficult to swallow, just that there's something "there".
> 
> 
> 
> Does that make any sense?
> 
> 
> 
> Thanks -
> 
> 
> Terri



Yes, it makes perfect sense.  And given your familial history with thyroid nodules, you could very well be having problems.  Borderline hypo 5-6 years ago is now considered hypo as they lowered the threshhold for what is considered hypo.  I believe any TSH reading over 3.5 is now hypo.  That number used to be 5.0.  Some labs have changed their reporting and some haven't.  I think it is worth it for you to go get testing again and to probably have your neck palpated by someone who knows.  You could also have some nodules and they are pressing on your throat.  That is a very common symptom of that--feeling that pressure.


----------



## Terri5176

I have an appointment with my OB/Gyn on the 18th (ever try to get a quick appointment?) but I'm thinking of going to the regular group to get tested.   It's too bad that these days it's harder to get a doctor that *knows* you - it's always someone who is in a hurry, and doesn't really listen.   



Terri


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## chocovrdmicears

Hi there! I have some questions that I was hoping someone might be able to help me.. I am just so upset right now...I just don't know what to do. 

6 months ago I was diagnosed with hypothyroidism. My inital bloodwork came back with a level of 32!
I was put on levothyroxine. (can't remember the dosage).
6 weeks later my level tested at 31. 
They increased the dosage.
6-7 weeks later my level tested at 11. Still not great..but obviously better.
They increased my dosage to 112mcg which I have been taking for the past 2 months. I just had my blood drawn Friday and I got the results back today.
My levels are now at *43*! I just am so blown away that it is now more than where it started! How is this possible? I am trying to get an appointment with my endroc. but she will be leaving for vacation next week so i am not sure I can see her until she gets back. I just don't understand! Does anyone have any thoughts or ideas how my level can increase so much after being on medication for all these months? What should I do now? I am so upset...I just can't believe it. 
*Any* thoughts or suggestions would be greatly appreciated!


----------



## angwill

I don't know what is going on with you personally.  I can only speak of why my TSH level went up drastically and appearantly for no reason in the past.  I was taking multi vitamins with iron.  Apparently iron is not a good mix with thyroid medicines.  There are also certain foods that could effect the level.  Now my aunt who has hypothyroidism takes her multivitamin with her sythroid every day and never had it happen to her so I suppose it varies person to person.  I bought centrum silver (only medicine for the elderly has no iron in it) and have not had that problem since and my level went back in line when I stopped taking my multi vitamin.  HTH


----------



## Christine

A couple of thoughts to choco:

1.  Make sure you take your thyroid medication everyday on an empty stomach.  Do not change how you take it otherwise you will get variances.

2.  As the other poster mentioned, do not take iron for several hours before or after your thyroid medication.  Iron binds with the thyroid hormones and it cannot be utilized by the body.

3.  Other things can interfere with thyroid hormones, calcium being one of them.  Just make sure the meds are taken AWAY from anything else.

4.  Make sure that despite whatever dosage changes your doctor is prescribing, that you are sticking with the SAME brand of thyroid medication.  It is proven that generic thyroid hormone has wide variances between the different companies that make them.   You must be sure that you stick with the same manufacturer or you will have a very hard time getting regulated.  This is not to say that you cannot take a generic one; however, make sure that the generic is made by the same company.  For instance, you don't want to get 112 mg of Levothyroxine made by Sandoz one month and then your next month's supply comes from Forest Pharmaceuticals.  It won't be the same.  Does that make sense?

5.  Thyroid medication is VERY sensitive to heat and time.  If you got an 'old' batch or your medication was exposed to heat (in the car, mailbox, bathroom, etc) it may be less effective for that vial.  I would look at the medication for the month prior to your TSH shooting back up.  Was it different in some way?

6.  Lastly, you may be doing everything perfectly with the meds; however, if you have something like Hashimoto's thyroiditis, your gland is going to function erratically.  For the month that your TSH went down to 11, maybe your gland worked a little bit and put out some thyroid hormone.  On the month it shot back up, maybe your thyroid gland decided not to work.  It is very hard dealing with a dying thyroid gland.  Lots of ups and downs.


----------



## chocovrdmicears

Thank you so much for the info! Christine, you taught me many things! I had no idea that the medication itself could be so *sensitive*. I don't take any other medications/vitamins and I always take it the same time, every morning, on an empty stomach. I guess I just assumed that I would take the medication, and I would get better!  silly me! lol! I had no idea that this was going to be such a long and unpredictable road.  The good news is that my Dr. called and will see me tomorrow morning. Thanks to your information I now have some specific questions to ask. Wish me luck! And thank you again for taking the time to help me.


----------



## tpmpro687

I think this is an awsome site. We are checking in Old Key West on the 22nd of Aug. We are going this year to celebrate being cancer free. I have had nodules for over a  year and a half. I had biopsys done christmas eve and Jan 3. they called to tell me that they were cancer. The doctor at the time who was home on maturnity leave called said not a big emergancy just don't sit on it that it was non aggressive. If i had any question to call the office. After I pulled my self together the next day I called with a recomendation another doctor. I went and saw Dr. Lee and Jan 2th I had my surgury. He came out and told my husband that it was a good thing I didn't wait that it was moderate aggressive. They had to remove one of my paraglands and some of the lympth gland as well because it started to spread. I was in the hospital for 6 nights and 7 days. They couldn't get my calcium level regulated. From the surgury I have a paraylized right vocal cord. They gave me 5% of getting my true voice back. Right now I sound like Minnie mouse (thats what my husband and lot of people say) I had to one round of radiation in March. March 19th I was told I was cancer free. My husband asked me before surgury what I wanted when everything turned out to be okay and I told him I wanted to go to Disney with him and my 2 sons and we are a week and 3 days away.


----------



## luvmarypoppins

tpmpro687 said:


> I think this is an awsome site. We are checking in Old Key West on the 22nd of Aug. We are going this year to celebrate being cancer free. I have had nodules for over a  year and a half. I had biopsys done christmas eve and Jan 3. they called to tell me that they were cancer. The doctor at the time who was home on maturnity leave called said not a big emergancy just don't sit on it that it was non aggressive. If i had any question to call the office. After I pulled my self together the next day I called with a recomendation another doctor. I went and saw Dr. Lee and Jan 2th I had my surgury. He came out and told my husband that it was a good thing I didn't wait that it was moderate aggressive. They had to remove one of my paraglands and some of the lympth gland as well because it started to spread. I was in the hospital for 6 nights and 7 days. They couldn't get my calcium level regulated. From the surgury I have a paraylized right vocal cord. They gave me 5% of getting my true voice back. Right now I sound like Minnie mouse (thats what my husband and lot of people say) I had to one round of radiation in March. March 19th I was told I was cancer free. My husband asked me before surgury what I wanted when everything turned out to be okay and I told him I wanted to go to Disney with him and my 2 sons and we are a week and 3 days away.




Thats a great reason to celebrate! If I could ask you a couple of ?? How many lymph nodes did you have out? I had 47 out and 6 had cancer. Did you dr. tell you what the agressive component was? Mine is really agressive I think. The hosp. only has 1 to 2 patients a year with mine - columnar cell variant. What was your radiation dose? I had 200. Did they mention anything to you about injecting foam into your neck to help the vocal chord. I have 1 that they say is weak and my voice is bad sometimes. But also I am attributing that to the other surgeries I have had this year (bad, but not related to the cancer). Everytime they stick the breathing tube down me I take a step backwards etc. Do you have any neck/shoulder pain etc? I not only had the neck dissection but then my jugular vein burst and I almost died so that digging and cutting has messed me up alot too. Cant feel the ear, cant lift the shoulder that well etc. What did you think of the Low Iodine Diet. I have to do it again next year in prep for the scan they told me etc. 

Any info would be helpful, thanks.


----------



## DisMomme

Does anyone take their thyroid meds at night?  I love my sleep in the morning and have worked my AM routine to allow me to sleep in.  Therefore I am eating breakfast within 20 min. of waking.  Even if I took my meds as soon as I wake up it won't be on an empty stomach long enough for it to work.  I also take calcium and Vitamin D pills with my meals.  I am thinking I can either take my thyroid meds at night right before bed or set an alarm for 5AM, take the pill and go beck to sleep (hopefully).  Which is better?


----------



## chocovrdmicears

DisMomme said:


> Does anyone take their thyroid meds at night?  I love my sleep in the morning and have worked my AM routine to allow me to sleep in.  Therefore I am eating breakfast within 20 min. of waking.  Even if I took my meds as soon as I wake up it won't be on an empty stomach long enough for it to work.  I also take calcium and Vitamin D pills with my meals.  I am thinking I can either take my thyroid meds at night right before bed or set an alarm for 5AM, take the pill and go beck to sleep (hopefully).  Which is better?



 My first test came back in the 30's...next blood test they were down to 11...six weeks later they were up to 42. On my doctors advice I have been taking my medication 1 hour before I even have my coffee in the morning. I have been getting up at 5:00 am every day for 6 weeks! yikes! I just had my blood drawn last Friday and am anxiously awaiting the results.  I will let you know if the early hour made a difference!


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## 5lilfish

I posted this on the community board and was directed over here.  I feel a little bit better than I did when Iposted this but I still have all the symptoms to varying degrees.

I was just diagnosed with Hashimoto's Disease after 9 months of suffering from a whacky list of symptoms...and having various other scary things ruled out (MRI's, EMG, bloodword). I've had muscle cramping/twitching/fatigue, mental fog, general overwhelming fatigue, puffy face, throat issues (tightness, hoarseness, sore), and some other things. 

I am happy to have some answers. On top of Hashimoto's disease, I am a bit anemic and I have low Vitamin D levels (26, I believe). I've been on a small dose of Lev-something for about 3 weeks now (small dose because while my antibodies are high, my thyroid levels are still ok). I have to say I feel crappy. I am exhausted and just plain do not feel well. There are times I just have to lie down and sleep and there are times I feel like I have been run over by a truck. Also, the muscle fatigue is sometimes horrible...in my arms especially.  The worst part, in terms of being annoying and worrisome, is my throat.  It just feels tight and like something is pushing on it.  It's worse if I lie back.  It also affects my talking sometimes.

Is this typical? my levels will be re-tested in a month. Will this get better...because right now this really stinks. I have 5 kids and NO energy. It's beginning to get me down.  Also...is it normal for the symptoms to come and go?

Thanks..
Jess


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## Babypandaroo

I was just recently taking my synthroid medicine at night too and it doesn't seem to be helping. I am still tired alot and my doctor put me on iron tablets and vitamin c  a month or so ago.  I still feel like i could sleep for a week. What is the best time for my synthroid tablet? Mind you im not a morning person and my breakfast is usually later


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## jennz

I usually take my med in the middle of the night when I get up to go to the bathroom   The instructions are 1 hour before eating or 2 hours after eating, so I would say if you haven't eaten 2 hours before bed you're okay.  I think (and it's just my thought here....) they say first thing in the morning to make sure it's on an empty stomach.


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## kathleena

Some general comments on recent posts:

Time of day doesn't matter. What does matter is what you eat.  Wait one hour after taking the pill and wait 2 hours after eating, just like the person before me said.

Synthroid (or levothyroxine, Levoxyl) is not fast acting with regards to symptoms.  This is why you have to wait 6-8 weeks for a re-test, to allow your body time to adjust.  The TSH level is very slow to respond.

Symptoms lag behind the numbers.  What you feel today may be a result of your condition 6, 8 10, 12 weeks ago.  This is not a quick fix, you have to give it time.

When the doctor tells you "it's normal" what is the number?  Ask them what the TSH is and ask them what the lab range is.  Ask for a copy of your test *every time* and record your own numbers in a spreadsheet.  If the lab range is .5-4.5 and your number is over 3.0, your doc is out of touch.  The endos want the PCPs to treat when over 3.0 to bring it back down closer to 1.5.  When I was at 3.3, my doc started me on .25 lebvothyroxine - the smallest dose.  I was on it for 1 year and averaged around 1.7-2.0.  Then the numbers went up to 3.0 again, and we raised it to .5.  Then to .75.  Now I'm normalized on .75 to just below 2.0.

Most people who are very sensitive to TSH (not everyone is) feel best if the number is below 2.  You need to determine this yourself, but remember - symptoms lag behind.  Do not expect a miracle drug here!

The brand you take may have different fillers.  You may do better on a different brand.  If you go thru three blood tests and your TSH has normalized below 2 and you still feel crappy, as the dr to change the med.  It may take a bit to normalize again.

Hope this helps someone.

PS just for credentials - I doctor hopped for 8 years before I found one who would treat my TSH which went from 2.6 to 4.9 during that time.  Finally diagnosed with hypothyroid, it was too late.  Within two years I was hyperthyroid.  I have TSI antibodies which cause Graves disease.  Being hypo for so long made them skyrocket.  I was 2 years on hyperthyroid meds and then once off for a year, I was stable at around 3.3.  But the antibodies were rising again.  I had been told that if TSH was kept as close to 1.5 as possible, the antibodies should fall.  Four years later and antibodies have fallen from 400 down to 120.  They were at 440 before when I went hyper.  Thank God I have a great doc who understands and is willing to treat me at a lower number.  What is happening with my thyroid is it is slowly dying.


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## tigercat

I am new on this thread.  I am at a loss right now with my meds.  I have Hashimoto's disease.  I was diagnosed about 10 years ago with that but have been dealing with it I believe for 30 years.  I have  been on Levothyroxine but get Eltroxin.  Not sure if that is a generic brand or not.  For several years I have been having a problem breathing when I do things, gaining weight even though watching what I eat and trying to exercise, chest pains, dizzyness, nausea, and a rash on my stomach.  I have gone to the Dr. about each one of them and have had my lungs tested, a couple of heart tests, a test on my head about the dizzyness.  Nothing has come up.   She tells me I am fine.  Well if I am fine why do I get these things????  Now I looked at the sheet the pharmacy gave me and those symptoms are  things you should look for.  I am nervous about going to the Dr about this as I am sure that she will fluff it off.  Can these symptoms be a cause of the meds I am on?
tigercat


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## KCmike

My wife was diagnosed with thyroid cancer.  They found nodules are her neck during a routine exam (really not routine because we switched doctors feeling that we weren't getting time and attention throughout the years and my father died two months ago we sparked both my wife and I to get exams...we are both 40 yrs old).  So she had a biopsy by needle and it came back as papillary cancer on one of the nodules.  We are both scared.  We have three children and consider ourselves still relatively young.  We have scheduled the surgery to take out her entire thryoid in two weeks.  We have heard that the success rate is very good with this type of cancer.  I would be interested in hearing from anyone who has gone through this or a good website for information.  I appreciate everyones time for reading this post.


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## jennz

tigercat said:


> I am new on this thread.  I am at a loss right now with my meds.  I have Hashimoto's disease.  I was diagnosed about 10 years ago with that but have been dealing with it I believe for 30 years.  I have  been on Levothyroxine but get Eltroxin.  Not sure if that is a generic brand or not.  For several years I have been having a problem breathing when I do things, gaining weight even though watching what I eat and trying to exercise, chest pains, dizzyness, nausea, and a rash on my stomach.  I have gone to the Dr. about each one of them and have had my lungs tested, a couple of heart tests, a test on my head about the dizzyness.  Nothing has come up.   She tells me I am fine.  Well if I am fine why do I get these things????  Now I looked at the sheet the pharmacy gave me and those symptoms are  things you should look for.  I am nervous about going to the Dr about this as I am sure that she will fluff it off.  Can these symptoms be a cause of the meds I am on?
> tigercat



Are you going to an endo?  I would suggest trying another doctor...


----------



## jennz

KCmike said:


> My wife was diagnosed with thyroid cancer.  They found nodules are her neck during a routine exam (really not routine because we switched doctors feeling that we weren't getting time and attention throughout the years and my father died two months ago we sparked both my wife and I to get exams...we are both 40 yrs old).  So she had a biopsy by needle and it came back as papillary cancer on one of the nodules.  We are both scared.  We have three children and consider ourselves still relatively young.  We have scheduled the surgery to take out her entire thryoid in two weeks.  We have heard that the success rate is very good with this type of cancer.  I would be interested in hearing from anyone who has gone through this or a good website for information.  I appreciate everyones time for reading this post.



KCmike... for you and your wife and family.  I had this type of cancer as well, I was 26 at the time.  (That was 18 years ago).  Get used to hearing "If you're going to have cancer this is type to have."  I heard that all the time.  There is a very good success rate, you're correct, but it's still the Big C and very scary, at least to me.  The surgery itself wasn't too bad. Will she have radiation after?  The hardest part, for me, was getting my thyroid meds adjusted.  That takes months.  Is she seeing an endo?


----------



## KCmike

jennz said:


> KCmike... for you and your wife and family.  I had this type of cancer as well, I was 26 at the time.  (That was 18 years ago).  Get used to hearing "If you're going to have cancer this is type to have."  I heard that all the time.  There is a very good success rate, you're correct, but it's still the Big C and very scary, at least to me.  The surgery itself wasn't too bad. Will she have radiation after?  The hardest part, for me, was getting my thyroid meds adjusted.  That takes months.  Is she seeing an endo?



We were told to wait till after the surgery.  She will have the iodine treatment about six weeks after the surgery the surgeon said.  Did it ever come back for you?  Did you have your entire thryoid taken out?

Thanks.


----------



## jennz

No the cancer never came back, but I still have checks.  Yes I had my entire thyroid removed and then had radiation.  I didn't get sick from the radiation, but it was a high dose and I had to stay in the hospital until I wasn't radioactive anymore.    It was for a few nights. I don't know if they still treat it like that.  My endo keeps my TSH levels low so that any remaining thyroid cells aren't stimulated (this is common practice w/thryoid cancer patients).

I hope that helps...feel free to ask any other questions here or pm or email me.  I know this is a scary time for you all.


----------



## luvmarypoppins

KCmike said:


> We were told to wait till after the surgery.  She will have the iodine treatment about six weeks after the surgery the surgeon said.  Did it ever come back for you?  Did you have your entire thryoid taken out?
> 
> Thanks.



Hi Mike, I know you can't read the whole thread. The thyca web site is good. It also has the low iodine diet that you have to use before radiation on it. My diet was a little different from that as my rad. onc. does the NIH diet and something else really strict combined etc. My whole thyroid came out. They will tell you the stage 1-4. Its based on age also, so your wifes age is great. I am the exception to the rule. My tumor was 12,5 centimeters, huge they told me and already spread to the lymph nodes, Papillary is the best to have and that is what I have too. Unfortunately I have the rare and agressive columnar cell variant so they just have to watch and wait. The endo. told me she thinks it will come back and the rad. onc. says they will just give me more radiation etc. The regular dose is 150 and I got 200. Your kids really need to stay away from your wife for the radiation week at home.  Our 3 ds knew the limits etc. You can have her use rubber gloves if she wants to touch the computer keyboard or tv remote etc. Maybe send them to grandparents, neighbors etc. I only had to have my synthroid adjusted once after surgery. I started out 150 and now have 200. I will only take the name brand because of what I read on these boards and I asked the endo etc. Your wife has alot on her side age, caught early etc. Best of luck and tell her to join in when she feels better.


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## tigercat

No I am not going to an endo.  My Dr doesn't think my thryroid is that bad.  I am not sure how bad it is suppose to get before you see a specialist.  She just keeps telling me it is probably stress.  Everything is stress.
tigercat


----------



## angwill

tigercat said:


> I am new on this thread.  I am at a loss right now with my meds.  I have Hashimoto's disease.  I was diagnosed about 10 years ago with that but have been dealing with it I believe for 30 years.  I have  been on Levothyroxine but get Eltroxin.  Not sure if that is a generic brand or not.  For several years I have been having a problem breathing when I do things, gaining weight even though watching what I eat and trying to exercise, chest pains, dizzyness, nausea, and a rash on my stomach.  I have gone to the Dr. about each one of them and have had my lungs tested, a couple of heart tests, a test on my head about the dizzyness.  Nothing has come up.   She tells me I am fine.  Well if I am fine why do I get these things????  Now I looked at the sheet the pharmacy gave me and those symptoms are  things you should look for.  I am nervous about going to the Dr about this as I am sure that she will fluff it off.  Can these symptoms be a cause of the meds I am on?
> tigercat



I would suggest finding a new doctor.  If you don't trust or believe in them then it's time to move on. 

Levothyroxine is the generic version of synthroid so I don't know if the Eltroxine is a brand name? 

Your symptoms can be a sign of lots of different things including stress or anxiety so I suppose that is why your doctor tested you for other things.  It is good she tested your heart and head rule out something else going on.    

I am not a doctor but the symptoms of chest pains, dizzyness, and nausea would be there if you had hyperthyroidism because your body functions would be faster rather than slower with hypothyroidism.  This your doctor would know by testing your TSH level.  If you thyroid level is within limits your doctor would not think it a symptom of your thyroid.  Do you go back and forth with both hypo and hyperthyroidism?

As for the rash and breathing problems I don't know of those being symptoms that should be watched for in hypothyroidism.

I hope you figure out what is going on with you soon.


----------



## Christine

KCmike said:


> My wife was diagnosed with thyroid cancer.  They found nodules are her neck during a routine exam (really not routine because we switched doctors feeling that we weren't getting time and attention throughout the years and my father died two months ago we sparked both my wife and I to get exams...we are both 40 yrs old).  So she had a biopsy by needle and it came back as papillary cancer on one of the nodules.  We are both scared.  We have three children and consider ourselves still relatively young.  We have scheduled the surgery to take out her entire thryoid in two weeks.  We have heard that the success rate is very good with this type of cancer.  I would be interested in hearing from anyone who has gone through this or a good website for information.  I appreciate everyones time for reading this post.




KCMike,

I was diagnosed with thyroid cancer when I was 31.  I also had small children and the finding was incidental.  I had also just changed doctors and it was picked up during a routine neck exam.  

I am 45 years old now and my cancer never came back; however, I will tell you that it took more than one RAI treatment to get rid of all my tissue.  My tumor was only 1 cm but my gland was hard to ablate for many reasons.  The best website is www.thyca.org.  There is also a listserv you can join (follow the support link on the website) that is great.  You will got TONS of support there and all your questions answered.  I highly recommend doing lots of reading there prior to your wife's surgery and treatment so that you can make sure that you optimize her care and treatment.


----------



## tigercat

The symptoms that I mentioned are actually mentioned on the sheet the pharmacist gives out with your medication.  Since I have been on it for a while I had not received it for years.  I had decided to look at it again so went and got a copy from the pharmacist.  It listed the breathing problems, chest pains, dizzyness ect.  I can't change Dr's as there are only so many Dr's in town and they are all full up.  I live in a smaller town and it is a long trip out of town.  I am going to my Dr tomorrow so will find out then what she thinks.  With Hashimoto's you can go from hypo to hyper.  
tigercat


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## TinaMcTeer

Hi everyone. I was just diagnosed today with Hypothyroidism. The Doc said my thyroid isn't working.  I am going for my first scan on October 8th. I believe I have had it since 2002. I remember complaining after my daughter was born that I couldn't concentrate along with other things.I just have to say that I am thankful that my new GP saw the signs and recomended getting tested. Something my old GP missed. My GP said they have never seen it in someone so youing. I am 29.


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## Christine

Welcome to the thread!

Most likely your thyroid failure is due to Hashimoto's thyroidities or just a plain old thyroid failure.  Hashimoto's is fairly common after a pregnancy.  It is an autoimmune disorder where the body begins attacking the thyroid gland.  Most thyroid failure isn't due to anything serious, thank goodness.


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## TinaMcTeer

Christine said:


> Welcome to the thread!
> 
> Most likely your thyroid failure is due to Hashimoto's thyroidities or just a plain old thyroid failure.  Hashimoto's is fairly common after a pregnancy.  It is an autoimmune disorder where the body begins attacking the thyroid gland.  Most thyroid failure isn't due to anything serious, thank goodness.



Thanks Christine. 

I am happy to know that I have somewhere to go to when I have questions. I picked up my perscription (Levothyroxine 200mcg) today, although I can't start taking it until after my scan is done on October 9th. My TSH levels are well above 100.   I am hopeful that I will feel at least a little better by the time my trip to DW in January. It seems that I can go for about 4 hours before I get really tired. I understand that this is going to be a long road but I at least know the cause of most of the problems that I have been having. Most of all I want to be able to think clearly. I am sure I will have lots of questions and I want to thank you all in advance. (Ugh, Now if only I can get this darn headache to go away)


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## Christine

Your TSH is pretty high!!  No wonder you feel so bad.  I would say that your gland is in almost complete failure.

I have no gland, due to thyroid cancer, and to prep for a scan I used to have to go off my medication so that I would induce a hypothyroid state.  My TSH would go up to 145 after about 6 weeks and I felt ABSOLUTELY dreadful.  Fornutately, I only had to function like that for a couple of weeks.  How awful for you.

It will take you a long time after your meds to stabilize.  You probably won't start to feel anything for about 2 weeks (it has a very long half life and it takes a while to start affecting your body).  At 8 weeks you will probably start to get closer to where you need to be and, because you have been so bad off, you may feel great even if your numbers aren't quite there.  

Also, since you are so hypo, you may feel jittery for a week or two on the high dose you are starting with.


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## bdavis

I was told that I have Hashimotos disease... a burned up thyroid due to an auto immune problem that caused my white blood cells to attack my thyroid. I apparently have a level of .4 whatever that is... almost at a coma state.. i don't know how I lived with the exhaustion and the inability to think clearly. I honestly thought I was losing my mind. Now I am just scared. I don't know what to expect and so far I have noticed a head ache and dizziness in the mornings.. I'm having a difficult time getting out of the bed and it seems worse than before I took the medicine. I have two kids and now I'm terrified. Will it get better?


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## luvmarypoppins

KCmike said:


> My wife was diagnosed with thyroid cancer.  They found nodules are her neck during a routine exam (really not routine because we switched doctors feeling that we weren't getting time and attention throughout the years and my father died two months ago we sparked both my wife and I to get exams...we are both 40 yrs old).  So she had a biopsy by needle and it came back as papillary cancer on one of the nodules.  We are both scared.  We have three children and consider ourselves still relatively young.  We have scheduled the surgery to take out her entire thryoid in two weeks.  We have heard that the success rate is very good with this type of cancer.  I would be interested in hearing from anyone who has gone through this or a good website for information.  I appreciate everyones time for reading this post.



Just wondering how your dw is doing? Hope she is o.k.


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## cruisnfamily

TinaMcTeer said:


> Hi everyone. I was just diagnosed today with Hypothyroidism. The Doc said my thyroid isn't working.  *I am going for my first scan on October 8th.* I believe I have had it since 2002. I remember complaining after my daughter was born that I couldn't concentrate along with other things.I just have to say that I am thankful that my new GP saw the signs and recomended getting tested. Something my old GP missed. My GP said they have never seen it in someone so youing. I am 29.


What is a scan?

I have been told I am borderline hypothyroidism.  I don't know which number is which but I know it was 4.62 and the range goes to 4.5.  My OB/Gyn referred me to my primary for followup.  Primary care Dr wants to wait and check again in 6 months.

I've google the symptoms online and from what I can see, the only symptom I have is the irregular periods...but that could be due to my age, 44.
_Edited to add: Just read thru some more of the thread and I see "hot flashes" mentioned occasionally.  I do get "warm sweaty moments" quite often these days.  I've been assuming they're pre-menopausish.  OB/GYN says I am definitely not in menopause.  But I've had friends describe their actual hot flashes to me and what I'm having doesn't sound at all like what they experience so I don't think they're menopause related anymore.  I don't know if this is thyroid related but I thought I would throw it out there in case it's relevant. 
_
I don't know, just looking for comments and feedback from all of you that have this.


----------



## Christine

Sometimes doctors perform a scan of thyroid gland so they can get an image of it.  This is most frequently done when someone has nodules or the gland is an odd size.  They give you a small amount of radioactive material in a pill form and they they take pictures of the gland while the radioactive material is in the gland.  They are able to see nodules and whether they are "cold" (non functioning) or hot (over functioning).  They can also see if areas in the gland accumulate iodine equally.  It measures uptake also so they can see how much of the iodine was absorbed and that gives them a clue about functioning.

I'm not sure that it is a common practice for diagnosing hypo/hyper thyroidism, it is mainly used in situations of lumps/bumps.  

If you are strictly hypothyroid with no associated autoimmune disorder like Hashimoto's, then your hot flashes should not be attributed to your thyroid condition.  If you do have Hashimoto's, this often causes swings in thyroid functions so, technically, if your gland was going beserk one day, you could get hot flashes.  

You should also note that, in perimenopause, which I am in also at age 45, hot flashes vary greatly from woman to woman.  I mainly get very hot through my face and torso but never below.  I also have not actually broken out into a sweat as some report.  I just get very red.  My coworker has hot flashes that affect her through her hip and thigh area and she gets drenched.  So there is no textbook case.  Oh, and my last for about an hour versus the quick 5-minute things you read about.


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## mrsklamc

Hi, I'm new here! Didn't realize there was a dedicated thyroid thread. I know some of you have posted on my thread from last friday saying I'd been diagnosed with thyroid cancer. At this point most of my questions have been answered (except finding someone who had a positive experience getting their lymph nodes removed,) but I thought it would be good to dig through this thread; looks like there's wealth of knowledge here.

Micayla


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## TinaMcTeer

Good news. My Scan came back Negitive. So now just taking the meds to make me feel better. It has already been a week and I am amazed at how much more energy I have.


----------



## Christine

TinaMcTeer said:


> Good news. My Scan came back Negitive. So now just taking the meds to make me feel better. It has already been a week and I am amazed at how much more energy I have.




That's great news!


----------



## mrsklamc

I hope someone can help me-

I had my thyroid and lymph nodes out last Thursday. Recovery has been going really well but they called with pathology last night and said it was aggressive and we shouldn't wait long before the scan, etc.

Before the surgery they told me to start cytomel right away. When I called today they said 'don't take any thyroid replacement.' Of course I said 'what about the cytomel?' they said stop taking it. I'm SO confused. I thought people didn't have to go hypo anymore because of thyrogen. Do I have to be hypo AND low iodine for the scan?


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## luvmarypoppins

mrsklamc said:


> I hope someone can help me-
> 
> I had my thyroid and lymph nodes out last Thursday. Recovery has been going really well but they called with pathology last night and said it was aggressive and we shouldn't wait long before the scan, etc.
> 
> Before the surgery they told me to start cytomel right away. When I called today they said 'don't take any thyroid replacement.' Of course I said 'what about the cytomel?' they said stop taking it. I'm SO confused. I thought people didn't have to go hypo anymore because of thyrogen. Do I have to be hypo AND low iodine for the scan?



Oh Micayla, I have been thinking about you and praying for you. Did you have a modified radical or a radical neck dissection. I forgot to say before that mine was radical but they kept the salivary gland. I dont even know what that drug is you are mentioning. I was told by the radiation oncologist to keep taking the synthroid so you dont go hypo and then you get the thyrogen shots 2 days before the scan, l on 2 days before and 1 on the day before all while doing the LID. Then I had the scan after the RAI treatment, lfirst I had to go have a blood test like 3 days post RAI and then the scan. I am not sure of the time that involved.  I am just saying are you getting the scan before the RAI??  Also if they say its agressive, then you should definetely ask what agressive variant it is, like mine is columnar cell, there is also tall cell, hurthle cell etc. And if its agressive ask them for the lymph node count of cancerous nodes, like mine was something like 47 removed and 6 were cancer positive. Since mine is so rare, (they only have 1 person a year they see, so I'm it) of course I am interested in others etc. and my rad. onc. decided to give me the 200mci as I told you 150 standard and then 25 for the lymph node spreaad and 25 for the agressive variant, so ask your doctors lots of questions . Blessings to you always.


----------



## Christine

mrsklamc said:


> I hope someone can help me-
> 
> I had my thyroid and lymph nodes out last Thursday. Recovery has been going really well but they called with pathology last night and said it was aggressive and we shouldn't wait long before the scan, etc.
> 
> Before the surgery they told me to start cytomel right away. When I called today they said 'don't take any thyroid replacement.' Of course I said 'what about the cytomel?' they said stop taking it. I'm SO confused. I thought people didn't have to go hypo anymore because of thyrogen. Do I have to be hypo AND low iodine for the scan?




Initially, they like you to be hypo prior to the scan.  They are using thyrogen more and more now, but less often with an initial scan.  While thyrogen is a wonder drug, it does not have the sensitivity that going hypo does.  If you are healthy, you need to go hypo and do your first scan so that they can be sure they are seeing everything they need to.  Cytomel is a very short-acting T3 but it does keep the TSH up for a little bit of time.  I generally had to be off Cytomel for 2 weeks prior to my TSH getting as low as it could.

I'm sorry to hear of your pathology.  Did you get anymore information regarding the type of cells, etc.  Why are they calling it aggressive?  Please try your best not to worry, even aggressive types have very good outcomes.


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## mrsklamc

thanks so much you guys...what is LID?

I thought that they did the scan before they did the radioactive iodine so they could adjust the dose?

Here is what happened..they did the biopsy on 10/1 and they thought it was papillary in one or two nodes at that time. They did a modified radical neck dissection,they removed only 9 nodes and 7 were cancerous. ( I think that they would have removed more but they were the size of quarters rather than peas, so they were fewer in quantity even though they were still the whole side of my neck. She said she was digging for them from my chin bone all the way down to my collarbone) There are BOTH papillary and follicular cancers, it's my understanding that follicular is more aggressive?  The surgeon said that since I am young and recovering well, and the cancer seemed to be growing quickly, she didn't want to see them take 8 weeks to do radioactive iodine- BUT as of yesterday the endo wouldn't even see me to schedule the scan for two weeks. He called me this morning and said he would see me tomorrow. I don't know if he just got around to reading my pathology, or what.


----------



## Christine

mrsklamc said:


> thanks so much you guys...what is LID?
> 
> I thought that they did the scan before they did the radioactive iodine so they could adjust the dose?
> 
> Here is what happened..they did the biopsy on 10/1 and they thought it was papillary in one or two nodes at that time. They did a modified radical neck dissection,they removed only 9 nodes and 7 were cancerous. ( I think that they would have removed more but they were the size of quarters rather than peas, so they were fewer in quantity even though they were still the whole side of my neck. She said she was digging for them from my chin bone all the way down to my collarbone) There are BOTH papillary and follicular cancers, it's my understanding that follicular is more aggressive?  The surgeon said that since I am young and recovering well, and the cancer seemed to be growing quickly, she didn't want to see them take 8 weeks to do radioactive iodine- BUT as of yesterday the endo wouldn't even see me to schedule the scan for two weeks. He called me this morning and said he would see me tomorrow. I don't know if he just got around to reading my pathology, or what.



Oh, okay.  Quite honestly, a mixed follicular-papillary is fairly common.  Follicular *can* be a bit more aggressive but not really, it's just a bit different than sleepy, old papillary.  When you said "aggressive" I thought there may have been some "tall cell variant" but you have not mentioned that.  I do know several with tall cell and it's a little more aggressive but they are doing okay too!  I believe luvmarypoppins is dealing with columnar variant of papillary which is pretty rare?

Your doc is just probably more concerned about the lymph node positivity than anything but if you read the thyroid cancer literature you will note that positive lymph node involvement has no worse outcome than no lymph node involvement.  The RAI is pretty good at taking care of that.

The LID = *L*ow *I*odine *D*iet.  

Generally, many good thyroid docs/nuclear med specialists do NOT like to give a 'tracer' dose of RAI to determine how much to use.  This is because even a small amount of iodine in the tracer dose will "stun" your thyroid cells so that when you get a treatment dose, they cells are less avid for iodine and won't take it up as well, thereby, making your treatment dose less effective.

Standard protocol is to get you hypo, get you iodine starved, and with lymph node involvement, give you about 200 mci of RAI.  About 10 days after you receive that big dose, they will do a whole body scan to determine if the cancer went anywhere distant (tracer doses don't show that well at all).  They will also get a good idea what your uptake was of the big dose.  THEN a year later (usually), they will have you do the LID again.  They may or may not make you go hypo (and use Thyrogen instead).  They will give you a small dose of RAI and see if the thyroid cancer that they blasted this year is gone.  So, you don't really know if your "clear" until a year later.


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## mrsklamc

Ok this may help me make a lot of sense of things then,

See, it's the surgeon who was telling me about the tracer dose and also who told me that it would then depend how long until we tried to conceive based on the radiation dose. The endocrinologist said it would be a flat 12 months, and also his assistant was telling us yesterday that they *couldn't* move the scan up any closer than six weeks, so maybe this reversed order from the surgeon is where things got confused.

Does it make sense that they would want me to be off thyroid replacements for 6 weeks? Should I expect to be getting fat and be sad and tired for that six weeks?


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## mrsklamc

Also-when you go hypo, does anything HELP? Like, sometimes when people are depressed they say exercise and healthy diet can help cope. Do things like this help AT ALL with hypo or are you just fat and sad and unenergetic and there's nothing you can do but wait it out? Does it matter if you eat healthy or junky food or do you just pile on pounds no matter what?


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## luvmarypoppins

The nurse who gave me my thyrogen shots told me, oh this stuff is really expensive and some ins. *** dont like to pay for it, You are getting it because of what you have been through, after the cancer I got a bowel obstruction, lost another 12 lbs, had a resection etc. She said they usually only use this in older people etc. I did read on my hosp. website that they just seem to use thyrogen as standard etc. I have already been told I am having the diet and scan again in the spring, so I would say at least 12 months min. for the family. And they will make you take a pregnancy blood test before the RAI, its standard. Also if you are getting 200, are you staying in the hosp. or at home etc. I know some states have laws etc. I stayed in the hosp. My dh works with radiation and he knew how "hot" I really was. 

I lost 20 lbs. in 2 weeks on the LID. mine was a combo of the NIH LID and other stuff. My rad. onc. is pretty strict and I was assigned a nutritionist from the hosp. Its weird stuff, like basmati rice, no potatoe skins, no dairy, no bread with bromated agents, no canned veg or frozen either, but I did see I could have only plain Birdseye Steamfresh, a lifesaver. I used no yolk egg noodles. I also could have Edys raspberry sorbet so that was good.  I am glad I was too nauseous to eat food the last thyrogen shot because I was so sick of lettuce etc. I also just bought a lb. package of meat, since I could only have 4 ounces twice a day, I knew that would last for 4 meals etc. Also I would say pig out on anything that is your favorite now so you wont feel like so much in denial later etc. 

I am just wondering and maybe christine could answer this  - maybe its just something each surgeon decides, but Micayla you said about the 9 lymph nodes and 7 were cancerous, so I had 47 and 6 were cancerous. I am just wondering why my surgeon decided to take so many out? He did tell my dh "Oh I just decided to take everything out  I know they want a wide margin, any comment christine??Tia. Blessings to you Micayla, and hang in there, we gotta fight tough!!


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## Christine

mrsklamc said:


> Does it make sense that they would want me to be off thyroid replacements for 6 weeks? Should I expect to be getting fat and be sad and tired for that six weeks?



Perfect sense.  That is how long it takes for your thyroid hormone to leave your body and for your TSH to go high enough to make a treatment worthwhile.

The first time I went hypo (I was 31) I worked up until the day I had treatment and I gained maybe 3 pounds (the first time is the easiest).  I never got that sad/depressed or fat on the 4 times I went hypo, although I did feel pretty bad at the end and I did start to get really paranoid about the scan.


----------



## Christine

mrsklamc said:


> Also-when you go hypo, does anything HELP? Like, sometimes when people are depressed they say exercise and healthy diet can help cope. Do things like this help AT ALL with hypo or are you just fat and sad and unenergetic and there's nothing you can do but wait it out? Does it matter if you eat healthy or junky food or do you just pile on pounds no matter what?




Most people do well with the weight gain when the follow the LID.  I think I lost 8 lbs when I did it (I was using Thyrogen though).  Otherwise, I didn't really gain a lot of weight and wasn't overly sad.  I just felt REALLY lethargic and slow.  I couldn't sleep well and I was restless.


----------



## Christine

luvmarypoppins said:


> I am just wondering and maybe christine could answer this  - maybe its just something each surgeon decides, but Micayla you said about the 9 lymph nodes and 7 were cancerous, so I had 47 and 6 were cancerous. I am just wondering why my surgeon decided to take so many out? He did tell my dh "Oh I just decided to take everything out  I know they want a wide margin, any comment christine??Tia. Blessings to you Micayla, and hang in there, we gotta fight tough!!




Probably because of the size of your tumor and what they saw when they went in, they decided to do a "radical" neck dissection.  My friend had that when they found out he had tall cell variant.  Standard procedure is to take out a few.  Believe it or not, when I had mine done it was not standard procedure to take any out.  So I didn't not have a lymph node check.  I could have very well had node involvement but I'll never know.  I know when I went back in for my completion thyroidectomy, one node close to the area was enlarged so they removed it but it was fine.  It was enlarged because of the previous surgery.  If I did have it in my nodes, the RAI took care of it.

As for your comments on Thyrogen, more doctors are using it as standard.  I don't know how comfy I am with that because in trial after trial, it doesn't do as well as going hypo.  I think in Micayla's case, I am happy they are making her go hypo.  But in many cases, using Thyrogen is a blessing and certainly in cases where going hypo can aggravate the cancer you would want to use Thyrogen.  It is a very careful balance.

To answer Micayla's question about the conceiving issue, I didn't pay much attention to that because I had just had my second child when I was diagnosed (that SUCKED!!) and that pretty much did me in for awhile.  I never planned on 3 kids and my diagnosed clinched the decision.  Many people on the thyca listserv have gone on to conceive and have kids.  You might want to post there as you will probably get a lot of good feedback there.


----------



## stric12345

I have been suffering with fatigue, facial flushing, and muscle and joint pain for months.  I had a TSH done, and it was 3.17.  The normal range is 0.03-5.0.  I have been reading that some doctors believe that the normal range should be lowered to 3.0.  I just wondered if anyone has had a TSH similiar to mine and been treated for hypo?  Thanks!


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## mrsklamc

luvmarypoppins said:


> Also I would say pig out on anything that is your favorite now so you wont feel like so much in denial later etc.



I have done that pretty much since I got my diagnosis. "I have cancer, I will eat ice cream if I want to!" As for the LID- I have taken to calling it my 'better than chemo' diet. It does start right before Thanksgiving which kind of stinks so we are moving TG to the Sunday before.


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## luvmarypoppins

mrsklamc said:


> I have done that pretty much since I got my diagnosis. "I have cancer, I will eat ice cream if I want to!" As for the LID- I have taken to calling it my 'better than chemo' diet. It does start right before Thanksgiving which kind of stinks so we are moving TG to the Sunday before.



I was doing it during easter and then one night I had to go to a catered dinner for my churchs 40th anniv. at a restraunt. It was a buffet!! I ate before and just brought fruit with me and gingerale. They sat us at a table the farthest from the food, sweet of them. Just wondering if they gave you a list of foods you CAN eat. My dietician told me she was working on one since everyone compalined that even with the thyca stuff, our own diet had things that were not allowed etc. They gave us a list of that stuff. I am seeing the rad. onc. in 2 weeks. I am going to ask her about what christine said about the hypo/versus thyrogen etc. and I am seeing if she got any more patients that have the same cancer variant as me. I doubt it though. I guess we will discuss my next scan and lid which should be in the spring. Last time she said I was doing great. Do you know what your radiation dosage is going to be??


----------



## Christine

luvmarypoppins said:


> I am going to ask her about what christine said about the hypo/versus thyrogen etc. and I am seeing if she got any more patients that have the same cancer variant as me.




luvmarypoppins--

Here are some excerpts from some of the studies done on Thyrogen:

*Even when Thyrogen-stimulated Tg testing is performed in combination with radioiodine imaging, there remains a meaningful risk of missing a diagnosis of thyroid cancer or of underestimating the extent of disease. Therefore, thyroid hormone withdrawal Tg testing with radioiodine imaging remains the standard diagnostic modality to assess the presence, location and extent of thyroid cancer. *

*The combination of a Thyrogen-stimulated scan and a serum thyroglobulin test did detect all patients with metastatic disease, although not as sensitive as combination testing performed after patients were withdrawn from thyroid hormone supplements.  The Thyrogen-stimulated scan failed to detect remnant and/or cancer localized to the thyroid bed in 16% (20/124) of patients in whom it was detected by a scan after thyroid hormone withdrawal. In addition, the Thyrogen scan failed to detect metastatic disease in 24% (9/38) of patients in whom it was detected by a scan after thyroid hormone withdrawal.  Based on these studies, one can conclude that even when Thyrogen-stimulated thyroglobulin testing is performed in combination with radioiodine imaging, there remains a meaningful risk of missing a diagnosis of thyroid cancer or of underestimating the extent of disease.*


Putting the above bolded comments aside, using Thyrogen or not using it is not a one-size-fits-all situation.  There are many instances, where an aggressive thyroid cancer is present, that actually being off medication for 6 weeks is dangerous to the patient.  As you know, not having suppressive doses of thyroid hormone can cause thyroid cancer cells to become very active and they can get moving again.  In those cases, Thyrogen would be the EXACT course of treatment.  

In cases where the thyroid cancer may be harder to detect, is slow growing and kind of lazy and latent, it is probably best to start out NOT using Thyrogen.


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## mrsklamc

They have not given me a list of things I *can* eat. I have found a local place that grinds peanut butter straight from nuts and I have some strawberry jam I made myself over the summer, so if I make some bread that's a start.

Endo said he would leave dosing to the nuclear medicine guy but he guessed 120-125 micro curies.

I'm sort of frustrated- the surgeon wrote a letter to the endo saying she thought my Radioactive Iodine should be moved up because I'm healing quickly and well, and in her opinion this is growing fast enough he should get it taken care of. He thinks that there's no way it's growing fast enough that it matters. I'm a little nervous that since he's waiting the dosage won't be high enough and I'll have to do this again in a year and THEN wait another year to try and conceive. But I don't think other endos around here are even accepting other patients so I'm kinda stuck.


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## luvmarypoppins

Christine

I think I am going to print this out and take it to the rad onc. and ask her about it. I know I have a remenant left, and she has said not to worry. I know she has even written a chapter in a thyroid cancer book, I dont know what it was about etc. I wonder what she will say. I'll report back.


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## livinlife25

Wish me luck!! I go in for an ultrasound of my thyroid on tuesday. This is a follow up from a previous ultrasound to see if the nodules they found have grown! So far I have not been on any meds or given any real diagnosis, just that my levels were slightly off previously and the nodules.


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## CharityLynn

Can someone explain the Low Iodine Diet to me, how exactly does it help? I have hypothyroid disease. I was diagnosed 10 years ago after the birth of my first child. It is kind of strange because I can go years and be fine without taking any meds, then bam it all goes haywire.

Well I think it went a bit off and I have gained 30lbs this year, some of that has to be from drinking soda again but it seemd to really pile on over 4-6 months. I am going to the doctors on monday for an unrelated issue but I know my doctor is going to make a comment about my weight and will probably send me for my levels.

I haven't really given my thyroid issues the attention they need. Id on't take my meds I notice I'll remember just after I ate or something like that. I will be picking up my prescription in the morning and will be making a real effort to remember my pill in the mornings.

I noticed the LID talk so I was just curious exactly what does it help/do. I think I'd have a really hard time giving up milk. 

TIA,

Charity


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## mrsklamc

CharityLynn said:


> TIA,
> 
> Charity



I hope you get the help you need, but this won't help you dear. It's for those of us who have cancer, to make our remaining thyroid tissue 'thirsty' for iodine so that the radioactive iodine they then give us kills *all* remaining thyroid tissue. (Your thyroid is the only part of your body that absorbs iodine.)


----------



## Christine

luvmarypoppins said:


> Christine
> 
> I think I am going to print this out and take it to the rad onc. and ask her about it. I know I have a remenant left, and she has said not to worry. I know she has even written a chapter in a thyroid cancer book, I dont know what it was about etc. I wonder what she will say. I'll report back.




luvmarypoppins--Oh doctors just HATE when you bring stuff like this in to them!!

I just want to say that, I believe in your case with your type of cancer, you should probably NOT be off meds and the Thyrogen is your best friend.  I understand you wanting the best scan of all, but I think you are one of the candidates for Thyrogen use.  I'm sure your doctor is pretty knowledgeable about all the studies and has deemed you to need this.

I think it's important to look at the literature if you are one of those people who does not have access to great medical care, a choice of endos or surgeons who have experience with thyroid cancer, etc.  That was the position I was in when first diagnosed.  I think you've got yourself with a very knowledgeable team.


----------



## Christine

mrsklamc said:


> They have not given me a list of things I *can* eat. I have found a local place that grinds peanut butter straight from nuts and I have some strawberry jam I made myself over the summer, so if I make some bread that's a start.
> 
> Endo said he would leave dosing to the nuclear medicine guy but he guessed 120-125 micro curies.
> 
> I'm sort of frustrated- the surgeon wrote a letter to the endo saying she thought my Radioactive Iodine should be moved up because I'm healing quickly and well, and in her opinion this is growing fast enough he should get it taken care of. He thinks that there's no way it's growing fast enough that it matters. I'm a little nervous that since he's waiting the dosage won't be high enough and I'll have to do this again in a year and THEN wait another year to try and conceive. But I don't think other endos around here are even accepting other patients so I'm kinda stuck.



I will tell you that from my own personal experience, surgeons don't really know the nature of thyroid cancer or how it behaves. They do not study it like the endos do.  They go in and remove it...period.  I'm not sure how the surgeon would be able to determine that your thyroid cancer is "fast growing" unless your pathology report has an indicator in it that states it is aggressive.  Your endo would be the absolute best judge of the nature of your type of cancer and if it warrants immediate treatment.  Most types do not and they have been growing in your neck over a period of 10 years or more.  In *most* cases thyroid cancer is a very slow grower.  Thirty or more years ago, people didn't even follow up with RAI and, honestly, not sure if they've even had worse outcomes.  

The way it was explained to me is that surgery is mostly the cure and RAI is the "icing on the cake."

As for food--what types of things are you looking for to eat?  Mainly snacks or main meals?  I remember one of the tips I got for a sweet tooth was to take a banana and put it in the oven (about 350 degrees, keep the peel on) until it was totally black and hot.  Take it out and unpeel it, put it on a plate, and then drizzle it with pure maple syrup.  The banana gets carmelized so it's very sweet and rich.  It's sort of like a bananas foster!  But not quite...


----------



## luvmarypoppins

Christine - I went to the rad. onc. today and asked her about this. She confuses me normally. But I think she understood it and said if its just for a scan she does thyrogen. I think that is all she uses most of the time. I didnt want to say much more to her. I am going to bring that statement and ask the endo when I go next month. She explains everything better to me anyway and she is part of my "team" as they call it.  Anyway my rad. onc. is doing some research to write a paper. I dont know if I will be in it or not, she is just doing statistics on paper. Even my dh who works with radiation is confused about what she is trying to prove. Its something about scanning, using thyrogen and radiation precautions after the scan. Well if she proves what she wants maybe I can benefit from it if I am not part of it etc. I am having the scan sometime in June probably. Its 14 months after the rai but she doesnt seem too concerned. She said today I am doing fantastic.  I am going to ask the endo if that is o.k. If she doesnt think so, I will call and inquire etc. I go for more blood work in dec. so when I come home from Disney I will see how things are. I was there last year and I didnt even know I had the cancer, but knew I was really sick. Maybe I should call my rad onc. Dr. Thyrogen!! Oh and she said she got a few more patients with rare variants. She lumps them together (columnar,tall cell, hurthle etc). Gee I wish I knew who my columnar cell partner this year is!! Maybe I should ask her to write a paper about that!!


----------



## m2j

I had a total thyroidectomy back in August. Immediately after surgery, I was placed on Synthroid. Pathology reports came back as Stage 1 Papillary thyroid cancer. 6 weeks after surgery, I went through  LID & RAI Treatment. Last week I was sent to get blood drawn to check my TSH level. The nurse at my endo's office left a message for me yesterday stating that my TSH level was too high and that instead of taking 7 pills a week, now I need to take 6 1/2 pills a week...only a 1/2 pill on Sundays. Today, I recieved my lab report in the mail & it reports that my TSH is low...0.057. This confuses me since the nurse has stated that my levels are too high, but the lab report states that it is low. The only explanation I can think of is that they want my TSH level to be as close to 0 so that I won't have a recurrance of cancer...I've read reports of TSH Supression but my endo has not mentioned it to me. If that's the case, will I be hypo for the rest of my life?
Now I'm worried that I am going to gain more weight. Since all of my thyroid problems began, I have gained weight & can't seem to lose any weight no matter what I try. Based on what I mentioned above, am I in a state of hyper or hypo? Feel like I'm hypo, but the numbers make it seem like I'm hyper. I am soooo confused.  Any help would be appreciated!!!!


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## luvmarypoppins

Christine is the expert here. I know she'll pop in when she can. She is a wealth of info and usually answers all my ? too, I know from the com. board she is having some issues with her dd right now, so I hope she cn get those taken care of. Oh the joys of teens/young adults. I can relate to her with that one. I am still learning all this stuff. My endo told me she wants me to be hyper and that the tsh should be close to 0 and as undetectable as possible which mine is. I am having the blood draw in dec. again. I have never gained any weight and actually between the cancer which no one figured out I had I lost about 30 lbs. On the LID I lost another 20 and then I also had to have a bowel resection and there went another 12, so my weight has stayed the same since April. I take 200 synthroid, only the name brand. Can you share your favorite LID receipe. I am doing it again in June for the 1 year follow up scan. Hmm, I will probably drop another 20 again, after thyrogen shot #2 I felt pretty sick enough not to eat last time on day 13 or 14 anyway and then I will pig out after I survive that diet. Mine is a combo of the thyca and nih and my rad. onc. own stuff. Wishing you all the best.


----------



## jennz

You are correct you want your TSH levels clos to zero, my endo keeps mine below.1, which technically is too low.  But they do this *in case* there are any thyroid cells left, they don't want them stimulated and productive.  Your nurse's message is confusing though - if your TSH is too high, then you need more synthroid.    If they are too low you'll take less, which is what she told you to do.  I know it's a balancing act, they was that TSH low but without you getting symptoms of being hyper.  Right not you are definitely closer to being hyper than hypo.  Some of the symptoms are close.  My endo always checks my hands to make sure there are no tremors and asks about heart palpitations, both signs of being hyper.

I've had problems losing weight since my thryoid cancer/removal too.  My endo actually told me it shouldn't be related to my thyroid and if anything it should be slightly easier for me to lose weight since I'm slightly hyper.  Whatever!  It's the only thing the man has said I don't like so I let him slide on it but I don't believe it - I've heard about too many situations like mine to think it's a coincidence.  

Hope that helps!


----------



## m2j

Thank you luvmarypoppins and jennz! I guess I'm was hoping that my levels would help explain why I have gained so much weight over the past few months...no such luck for me!  My next appointment isn't until Jan, so I'm just going to give it time & get all my questions ready for that appointment!
As far as the LID for me, I can't give you many suggestions for my favorite recipe. I hate to cook so I just ate many fruits and veggies. I struggled through those 11 days and absolutely hated that diet. I was lucky that it was only 11 days, as I've heard that many other people have had to do it longer! If I ever have to do it again, I will definitely do more research on different recipes.
Again, thanks for all your help! I'm so happy I found this thread!


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## Christine

m2j said:


> I had a total thyroidectomy back in August. Immediately after surgery, I was placed on Synthroid. Pathology reports came back as Stage 1 Papillary thyroid cancer. 6 weeks after surgery, I went through  LID & RAI Treatment. Last week I was sent to get blood drawn to check my TSH level. The nurse at my endo's office left a message for me yesterday stating that my TSH level was too high and that instead of taking 7 pills a week, now I need to take 6 1/2 pills a week...only a 1/2 pill on Sundays. Today, I recieved my lab report in the mail & it reports that my TSH is low...0.057. This confuses me since the nurse has stated that my levels are too high, but the lab report states that it is low. The only explanation I can think of is that they want my TSH level to be as close to 0 so that I won't have a recurrance of cancer...I've read reports of TSH Supression but my endo has not mentioned it to me. If that's the case, will I be hypo for the rest of my life?
> Now I'm worried that I am going to gain more weight. Since all of my thyroid problems began, I have gained weight & can't seem to lose any weight no matter what I try. Based on what I mentioned above, am I in a state of hyper or hypo? Feel like I'm hypo, but the numbers make it seem like I'm hyper. I am soooo confused.  Any help would be appreciated!!!!



Hello m2j!!!

Sorry I have been away so long.  You know I am on the boards but I sometimes forget to check this sub-board.  I feel bad about that!

At any rate, your nurse misspoke when she said your TSH was too high.  This often "gets" people.  What she meant was that your thyroid levels were too high (which makes your TSH low--TSH is not a thyroid hormone).  You were probably "too" hyper and they backed you off a bit.  I take 5 1/2 pills per week to get mine just right.  It's weird how sensitive the medication is.  

So you are actually fairly hyper which will make you feel bad.  It's a good level to be at for treating thyroid cancer but it is a careful balance between how hyper you can get without feeling like you're going to lose it.

Edited to add:  Please don't hate me for this but I've never had any weight issues since my thyroid surgery 14 years ago.  Sure, I gained some weight when I was off meds, but once regulated, it came off.  If I take too much thyroid hormone I start eating a LOT though.  My doc told me that many people can gain while hyper because it makes them have a ravenous appetite.  Even though they are burning more calories they aren't burning as much as they eat.


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## mrsklamc

You mean I have to do this again in a year? Argh. Do I have to go hypo for a scan every year?

I start the LID tomorrow, really my only challenge with it is not feeling comfortable with the meat products that are available at the grocery stores. They will say things like 'all natural' but I'm sure they consider salt to be 'natural.' 

I'm just beginning to get sort of tired and cranky, and it kinda bothers me because I'm not sure I would be if the tech who does the RAI hadn't told me I *should* be by now, ya know? Oh, the power of suggestion!


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## Christine

mrsklamc said:


> You mean I have to do this again in a year? Argh. Do I have to go hypo for a scan every year?
> 
> I start the LID tomorrow, really my only challenge with it is not feeling comfortable with the meat products that are available at the grocery stores. They will say things like 'all natural' but I'm sure they consider salt to be 'natural.'
> 
> I'm just beginning to get sort of tired and cranky, and it kinda bothers me because I'm not sure I would be if the tech who does the RAI hadn't told me I *should* be by now, ya know? Oh, the power of suggestion!



The protocol has changed about hypo scanning.  It used to be that you needed three clean scans the "old" way before they'd let you do Thyrogen.  Now I think it is down to just your first scan needing to be a hypo scan.

I was reading just last week that there were some problems with Thyrogen having "debris" in it and some of it was recalled and in some cases the company has asked the doctors to look at the vials before administering?  What the heck!!!!!  I've pretty much decided that I won't be using it again as I had an adverse reaction to it the third time I used it.  Overall though, it really is a godsend.

Oh and tired and cranky is definitely the way going hypo makes you feel.  Hang in there!

Edited to add:  I had to go to Whole Foods to get some decent checken that wasn't in a sodium solution.  More and more regular stores are offering more natural chicken now without the sodium but you do have to be careful.  I had no problems with beef though.  Pork is kind of difficult.


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## mrsklamc

Christine said:


> Oh and tired and cranky is definitely the way going hypo makes you feel.  Hang in there!



My poor husband kept asking me yesterday if I was mad at him cause I was quiet and staring off into space. I finally said, "honey, I'm just tired. If I GET mad at you, I will let you know. "


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## kathleena

jennz said:


> Your nurse's message is confusing though - if your TSH is too high, then you need more synthroid.    If they are too low you'll take less, which is what she told you to do.  I know it's a balancing act, they was that TSH low but without you getting symptoms of being hyper.



This happens to me all the time.  They say it is high because it really means that your thyroid is overactive (or high) although the way the labs are set up they measure TSH and the TSH is low in the lab range.  Because TSH is produced by the pituitary they don't say - your pit is low, we have to treat your thryoid.  So your thyroid is high, but your pit is low.

So if all they say is high or low - as them so what is the TSH lab range - you mean I'm high in the range or low?

Ya it's confusing.............


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## mrsklamc

Luvmarypoppins- I'm still mostly eating fruits and veggies, have had the 'lunch in foil' a couple times and DH made me guacamole on plain tostadas last night.

I'm not sure I can go to work this week- I was hoping to get all rested over the holiday and I have but I'm not sure I have the tact my job requires- I am blunt at my best and i'm afraid I'll look right at someone and say 'you're an idiot' because I can't think clearly enough for the platitudes.


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## luvmarypoppins

mrsklamc said:


> Luvmarypoppins- I'm still mostly eating fruits and veggies, have had the 'lunch in foil' a couple times and DH made me guacamole on plain tostadas last night.
> 
> I'm not sure I can go to work this week- I was hoping to get all rested over the holiday and I have but I'm not sure I have the tact my job requires- I am blunt at my best and i'm afraid I'll look right at someone and say 'you're an idiot' because I can't think clearly enough for the platitudes.



Micayla, sending you a . Honestly I dont know how you are feeling since I didnt go hypo, just had the thyrogen shots because I had already been through soo much they said with the coma, bowel resection etc. I did that lunch in the foil too. I tried to mix the vegs up so it wasnt the same all the time, looked colorful on the plate etc. Tried to be something like they were eating. I made a big batch of pot roast stuff , just the meat,onions potatoes and carrots. That was 1 lb. of meat so that lasted for 4 meals, I did the peanut butter on unsalted matzoh, not great but o..k. did stuff like jelly on orange chicken, snap peas and basmati rice, close to chinese food I could get as possible. etc. I would have liked some air popped corn, but I dont have a popper for that., I did the no yolk noodles so that was o.k. a few times. Since mine was at easter and I couldnt eat ham, I did a pork chop with maple syrup, sweet potatoe etc. I microwaved an apple and put cinnamon on it if I wanted a break from the regular crunching. Hang in there, you're doing great.


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## mrsklamc

luvmarypoppins said:


> Micayla, sending you a . Honestly I dont know how you are feeling since I didnt go hypo, just had the thyrogen shots because I had already been through soo much they said with the coma, bowel resection etc. I did that lunch in the foil too. I tried to mix the vegs up so it wasnt the same all the time, looked colorful on the plate etc. Tried to be something like they were eating. I made a big batch of pot roast stuff , just the meat,onions potatoes and carrots. That was 1 lb. of meat so that lasted for 4 meals, I did the peanut butter on unsalted matzoh, not great but o..k. did stuff like jelly on orange chicken, snap peas and basmati rice, close to chinese food I could get as possible. etc. I would have liked some air popped corn, but I dont have a popper for that., I did the no yolk noodles so that was o.k. a few times. Since mine was at easter and I couldnt eat ham, I did a pork chop with maple syrup, sweet potatoe etc. I microwaved an apple and put cinnamon on it if I wanted a break from the regular crunching. Hang in there, you're doing great.



Awww. Thanks! I mostly don't care that much about variety right now because I can't seem to care much about...much. I am dragging myself in to work in a few minutes so I can get a few things done in case I don't make it in for the rest of the week.


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## Christine

mrsklamc said:


> Awww. Thanks! I mostly don't care that much about variety right now because I can't seem to care much about...much. I am dragging myself in to work in a few minutes so I can get a few things done in case I don't make it in for the rest of the week.



Hang in there!!  You are really coming down to the worst part.  What you are feeling is SOOO normal.  I know that feeling of being tired and just feeling absolutely dull.  And it doesn't matter how much rest you get--it just doesn't work.

I am with you on the food.  By the end, I just didn't care.  I was so worn down, I couldn't really desire any good food.  This will be a different experience for you, however, if you ever induce hypo with the Thyrogen shots.  You will still feel pretty good so you will sort of care more about your lack of food options!!  

I just remember being so tired and lethargic then I ended up eating a lot of oatmeal.


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## jennz

Ditto what Christine said.    Being so hypo is horrible, just like being a giant slug.  However tv should definitely be able to hold your attention!

I've had my last scans with thryogen and am soooooo glad I can do it!  No problems at all.

Just remember that this will all be over soon.


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## mrsklamc

A Co-worker (who I always find condescending anyway) informed me this morning that for her,  sometimes it's just mind over matter. 

Yes, dear, and YOU have your thyroid. argh.


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## jennz

mrsklamc said:


> A Co-worker (who I always find condescending anyway) informed me this morning that for her,  sometimes it's just mind over matter.
> 
> Yes, dear, and YOU have your thyroid. argh.



Ah lovely...the experts weigh in - always fun right?    Aren't you glad you can come here and be understood?


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## mrsklamc

Finally gave in today and didn't go to work. DH said I almost seemed drunk, got in the shower and was in there forever like I didn't know what I was supposed to be doing. 

Thought you might find this funny though, if you've had to do this. I found myself staring at a headline at digg.com about a prisoner who had to have a five inch shank removed from...well nevermind where. I stared at it forever trying to figure out how they got the SHARK into the prison.


----------



## rubato

Hi everyone. I'm new here. I was diagnosed with Hashimotos about 4 years ago. I had a huge nodule and that was being watched for the 4 previous years, but then I gained 40 lbs in between tests and was sleeping for 20 hours a day, losing all my hair. You know, the standard stuff. So, I've been on Synthroid for the last 4 years. I lost the weight, feel better most of the time, and, because we are suppressing my TSH, my nodule is shrinking!!! Yah!

But, I still don't feel fully like myself. Sometimes, I have really good days. Sometimes, I'm living in a fog. I also catch everything. I'm assuming that's because I have an auto-immune disease, but it still sucks. 

Anyway, I just wanted to introduce myself. It's good to see the support people are getting on here.


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## Christine

mrsklamc said:


> Finally gave in today and didn't go to work. DH said I almost seemed drunk, got in the shower and was in there forever like I didn't know what I was supposed to be doing.
> 
> Thought you might find this funny though, if you've had to do this. I found myself staring at a headline at digg.com about a prisoner who had to have a five inch shank removed from...well nevermind where. I stared at it forever trying to figure out how they got the SHARK into the prison.



Hey--this happens to me sometimes on the DIS and I'm not even hypo!!  The things I *think* those thread titles say--well, I amuse myself sometimes.

The good news is--you're still typing relatively well.  You should have seen me when I was really hypo. When I went back and read some of the things I typed it was like I was drunk.  It's hard to believe that the first time I went hypo I worked right up until my treatment.


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## belle&sebastiansmom

Does anyone with Hashimoto's nodes feel like they are constantly choking when swallowing?  Sometimes it just feels like I've got steak stuff in my throat.  And if I bend my neck certain ways I feel like I'm choking.  I go back to the endo in January.  Just wondering if anyone else here has experienced this?


----------



## Christine

belle&sebastiansmom said:


> Does anyone with Hashimoto's nodes feel like they are constantly choking when swallowing?  Sometimes it just feels like I've got steak stuff in my throat.  And if I bend my neck certain ways I feel like I'm choking.  I go back to the endo in January.  Just wondering if anyone else here has experienced this?




I think that this is a pretty common feeling for anyone with thyroid nodules.  When they get to a certain size, they do put pressure on the throat and can impact swallowing.  While the nodules are harmless (benign), many people opt to have a thyroidectomy to get rid of that uncomfortable feeling.


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## belle&sebastiansmom

Christine said:


> I think that this is a pretty common feeling for anyone with thyroid nodules.  When they get to a certain size, they do put pressure on the throat and can impact swallowing.  While the nodules are harmless (benign), many people opt to have a thyroidectomy to get rid of that uncomfortable feeling.



My endo has mentioned removing them, since they are getting bigger but, thank God the ultrasound shows never cancerous, but he says that a thyroidectomy on a Hashimoto's gland is one of the most complicated surgeries, he says it's messy.

Anyone had their glands removed for "comfort"?


----------



## Christine

belle&sebastiansmom said:


> My endo has mentioned removing them, since they are getting bigger but, thank God the ultrasound shows never cancerous, but he says that a thyroidectomy on a Hashimoto's gland is one of the most complicated surgeries, he says it's messy.
> 
> Anyone had their glands removed for "comfort"?



I wondering how an ultrasound can show that something isn't cancer.   You know that it can't, right?  Have they done a needle biopsy.

Hashimoto's glands are often very vascularized (mine was) and it can be a bloody surgery.


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## mrsklamc

I didn't even know I HAD any swelling prior to being diagnosed w/ cancer a couple months ago and I can't BELIEVE how much more comfortable breathing is after having my thyroid removed. I would huff and puff going up and down stairs- I just thought it was from being a few pounds overweight. Ok, like 25 pounds overweight but not obese. 

Anyway, my point it- I know it's scary but I think you should definitely consider it. I don't know where you are but we (DH and I and my MIL the nursing professor) could not have been more pleased and confident w/ my surgeon so if you happen to be near Indy send me a PM.


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## rubato

belle&sebastiansmom said:


> My endo has mentioned removing them, since they are getting bigger but, thank God the ultrasound shows never cancerous, but he says that a thyroidectomy on a Hashimoto's gland is one of the most complicated surgeries, he says it's messy.
> 
> Anyone had their glands removed for "comfort"?




I've debated it. There's nothing like that feeling of not being able to swallow. But, I've had so many surgeries for other things, I'm reluctant to have one that isn't "absolutely necessary". I'm sure you'll do whatever is right for you.


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## mrsklamc

Does anyone know how many days AFTER RAI ablation before I can go off the LID?


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## belle&sebastiansmom

Christine said:


> I wondering how an ultrasound can show that something isn't cancer.   You know that it can't, right?  Have they done a needle biopsy.
> 
> Hashimoto's glands are often very vascularized (mine was) and it can be a bloody surgery.



All the endo has ever done is an ultrasound.  He says he can tell if a further biopsy is needed based on the color it shows (the hot spots) and the shape.  Because he says these things are normal, I've never had a biopsy.

Was the aftermath and recovery of your surgery difficult?

For those that have had the surgery for non-cancer:  Do you generally feel better after the diseased glands are removed?


----------



## mrsklamc

belle&sebastiansmom said:


> All the endo has ever done is an ultrasound.  He says he can tell if a further biopsy is needed based on the color it shows (the hot spots) and the shape.  Because he says these things are normal, I've never had a biopsy.
> 
> Was the aftermath and recovery of your surgery difficult?
> 
> For those that have had the surgery for non-cancer:  Do you generally feel better after the diseased glands are removed?



Spots on an ultrasound can be hyper-echoic or hypo-echoic (meaning whether they absorb sound waves or bounce them back. Cancerous cells tend to absorb sound waves ( I think, I might have that backwards) but the only way to tell for sure whether a mass is cancerous is a biopsy.


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## luvmarypoppins

mrsklamc said:


> Does anyone know how many days AFTER RAI ablation before I can go off the LID?



I got to go off the day after the radiation. Let me just say you feel so nauseous that you dont feel like eating too much. My rad onc. gave me compazine, but I think zofran would have worked much better. Also I am sure they have gone over all the radiation stuff (precautions) with you. I stayed in the hosp. overnight as my dose was really high. The rad. onc. says people just normally dont do that, well she found out where my dh worked and his background etc. and he(my dh) said I should stay over night since I was so "hot". I think you have to go out for a blood test 2 days after too. My rad. onc. said buy some rubber gloves to touch the remote and computer keyboard with, get rid of the pets for a week, we dont have any etc. 

Wisihing you all the best Micayla. Hang in there!! I'm praying for you. Gotta go to church. I might type some more later.


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## mrsklamc

So do people typically have to do the LID diet and a follow up scan every year?

That seems like a lot of rai over a lifetime?

I have read that everyones side effects are different, and it can depend on the dose, so Im praying my dose doesn't have to be as high as yours was, Luvmarypoppins.


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## luvmarypoppins

My rad, onc. told me she will decide what to do with me after my next scan in June, that will be the 2nd one and 1 year follow up. My rad. onc.  is too laid back I think. She says - oh just because you are stage 4, dont worry, its just a number, yeah easy for her to say!! She did say this next time will be just a little radiation and 2 days of precautions, it will also be 14 months instead of 1 year and she doesnt seem to care about that either. I talked to someone else and I think its 3 years"? Is this right Christine?? I am hoping that since mine is rare she wont make me some test subject and keep going with this etc. I think 3 would be good and I dont know if it will still contiune but the endo does the blood work every 4 months. My rad. onc. says - so what are you going to do, stop at Burger King! (after I got out of the hosp)


----------



## Christine

mrsklamc said:


> So do people typically have to do the LID diet and a follow up scan every year?
> 
> That seems like a lot of rai over a lifetime?
> 
> I have read that everyones side effects are different, and it can depend on the dose, so Im praying my dose doesn't have to be as high as yours was, Luvmarypoppins.



I think that for the first few years (or until you have several "clean" scans) you will scan and do the LID annually.  After you have your treatment (which will be a big dose of RAI), you will have tracer doses for your annual scans.  they are about 2-5 mci per scan (versus 150 to 200 mci for treatment doses).

My schedule went something like this:

Surgery in August 95
Ablation November 95
Whole body post-ablative scan 2 weeks after later (Dec 95)
Follow up scan - June 95 (it was positive for activity so I had a treatment).
Whole body post-ablative scan 2 weeks later
June 96 - Follow up scan (still positive for activity so had treatment)
June 97 - Whole body scan (CLEAN--YIPPEE!!)
June 98 - Whole body scan (CLEAN - YIPPEE)
Doctor says I can wait a few years.
Then Thyrogen gets released.  Doctor wants me to know spend my life scanning every year.  I told him "NO WAY."
June 2000 - First Thyrogen scan (CLEAN)
June 2003 - Thyrogen scan (CLEAN)
June 2006 - Thyrogen scan (CLEAN--but had reaction to Thyrogen so I won't use anymore).

Next plan is to to come of Synthroid for 2 weeks--just enough to get TSH to raise and do a withdrawal Thyroglobulin test.  Probably will no longer scan anymore.

All that for a freaking 1 cm papillary thyroid cancer!


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## mrsklamc

Holy cow. I had no idea. I thought this was a one time thing, then I started reading and talking with people online and realized they were doing it yearly. I'm sure I will deal somehow but that seems overwhelming to me right now.

One of the things I can't stand about my endo is that he doesn't seem to want to answer questions beyond the step that I am on RIGHT NOW. I am an information person, I want it all out on the table. My surgeon understood that and provided me copies of my ultrasounds, as well as the interpretations of my CT scans and ultrasounds. This guy either won't answer or gives vague answers, or he tells me one thing and then something different (i.e. he told me to start cytomel right away after surgery and then on my one week he was like, oh, you don't have to take that unless you have problems. $60 down the drain, thanks so much.) He told me I would have to wait a year to start trying to conceive and lots of things I am reading online say 6 months. If he comes back and changes it to 6 months I will be TICKED because we made a pretty big financial decision based on a year. Argh. Sorry for the rant.

I'm confused though- was your follow up scan June of 96?


----------



## Christine

mrsklamc said:


> . Sorry for the rant.
> 
> I'm confused though- was your follow up scan June of 96?



Not sure what you are asking...It was just one of my yearly scans after my treatment.

Early in my treatment, I also found that they were telling me that this was all a "one shot" deal and that things would be taken care of quickly.  As time went on, they started letting me know that they would not be leaving me alone.  Of course, a lot of that had to do with the fact that I couldn't get a clean scan right away.  Had a gotten a clean scan, though, I still would have scanned yearly for awhile.

My advice to you based on all that I've heard is that you do not want to conceive until you've had that clean scan.

Also the RAI does "work" and accumlate in your body for about 6 months.  I think one year is a better time to wait.  By then you will be scanning again.  If you get a clean scan after one year, I think it would be safe to try to conceive, but I am pretty cautious about that kind of thing.


----------



## mrsklamc

Please keep me in your prayers guys... I only have a couple of days left (ablation sched. Weds) but I just am starting to feel like I can't take it anymore!


----------



## Christine

mrsklamc said:


> Please keep me in your prayers guys... I only have a couple of days left (ablation sched. Weds) but I just am starting to feel like I can't take it anymore!



Hang in there--you are *almost* there.  Truly, these are the worst days.  I also want to add that usually the next day after the RAI you may feel a little worse.  That is totally normal (I was not expecting that).  I like to know exactly what will happen so I don't flip out.  I felt a little flu-like--it totally wears you out but then, really, that is the worst of it.  It is all an improvement after that.  I will be thinking of you and hoping it all goes well.


----------



## luvmarypoppins

mrsklamc said:


> Please keep me in your prayers guys... I only have a couple of days left (ablation sched. Weds) but I just am starting to feel like I can't take it anymore!



Hang in there Micayla. You can almost see the light at the end of the tunnel. Will pray for you. Did they tell you what the actual dosage will be? I didnt feel so good after either, not flu like which christine described but I felt crappy and thought like there were gremlins running around in my stomach and I did feel nauseous etc. You are doing great girl!!


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## mrsklamc

Yesterday and today I have just felt SO SAD and out of it that it almost seems like nausea would be an improvement, just to feel something besides sad and tired.  Tomorrow I just go for the tracer dose, I thought they might not do that any more but I guess where I'm going they do, and then a scan on Wednesday- then I am confused after that because it says the ablation is on Wednesday but I also thought someone somewhere along the line told me that it took a couple of days for the dosage to get here? I don't know. 

Another thing the instructions say is "You may be asked to come back approx 4-7 days after treatment for another scan- the nuclear medicine dept. will give you more information."

So basically I am very uncertain what is going on but thank God my DH is going with me tomorrow and is much more 1)clear headed and 2) assertive than I am.


----------



## Christine

mrsklamc said:


> Yesterday and today I have just felt SO SAD and out of it that it almost seems like nausea would be an improvement, just to feel something besides sad and tired.  Tomorrow I just go for the tracer dose, I thought they might not do that any more but I guess where I'm going they do, and then a scan on Wednesday- then I am confused after that because it says the ablation is on Wednesday but I also thought someone somewhere along the line told me that it took a couple of days for the dosage to get here? I don't know.
> 
> Another thing the instructions say is "You may be asked to come back approx 4-7 days after treatment for another scan- the nuclear medicine dept. will give you more information."
> 
> So basically I am very uncertain what is going on but thank God my DH is going with me tomorrow and is much more 1)clear headed and 2) assertive than I am.



I would be VERY surprised if they actually gave you a true tracer dose on Wednesday morning.  They can give you something else (I think it is a dose of lithium or something) to see how fast you will excrete the RAI.  Based on that test, they give more or less RAI.  But, honestly, I would bet my last dollar that you are getting the ablative dose on Wednesday.  The scan you may have to come back for 4-7 days later is what they call a "post ablative" scan.  This is very common (see my schedule a few posts above).  Any time they give you a large dose of RAI, they like to do a post-ablative scan.  On very rare occasions they have been able to visualize distants mets with the high dose RAI--things that would not show up with a standard scan dose.  

Don't fret about that at all--I was told by my technician that finding something like that is very rare and they hardly ever see it--only in people who have advanced disease.


----------



## mrsklamc

My TSH is 89. I got my tracer dose this morning, ablation is tomorrow- but then still LID and no meds for a week. I wasn't ready to hear that at all.


----------



## Christine

mrsklamc said:


> My TSH is 89. I got my tracer dose this morning, ablation is tomorrow- but then still LID and no meds for a week. I wasn't ready to hear that at all.



Good going.  I am surprised that you got a tracer dose, though. 

The reason the want you to keep up with the LID and no meds is that your thyroid gland absorbs and reabsorbs the iodine over a period of days.  If you suddenly eat a bunch of iodized salt or you take meds that will make your thyroid less avid, you could interfere with the treatment.


----------



## luvmarypoppins

Micayla - I will say a prayer for you tomm. I am going to Disney, so you can see God is Good and you will get through this too!!

Christine - I am so confused by all of this, I had the 2 thyrogen shots, had the 200 rai, only stayed on the diet for 1 day in the hosp, after the 2 weeks was geiger countered all the time there. I had to drink tons of water they said to go home. My scan showed the remnant and the infection that was in my stomach which is now surgically removed. I guess I am just wondering if I didnt get as good a treatment etc? Like not being off the meds and having the diet longer etc.


----------



## Christine

luvmarypoppins said:


> Micayla - I will say a prayer for you tomm. I am going to Disney, so you can see God is Good and you will get through this too!!
> 
> Christine - I am so confused by all of this, I had the 2 thyrogen shots, had the 200 rai, only stayed on the diet for 1 day in the hosp, after the 2 weeks was geiger countered all the time there. I had to drink tons of water they said to go home. My scan showed the remnant and the infection that was in my stomach which is now surgically removed. I guess I am just wondering if I didnt get as good a treatment etc? Like not being off the meds and having the diet longer etc.




luvmarypoppins--You will find that that every doctor does something different.  I too was allowed to resume my meds when I left the hospital.  And when I was being treated, they weren't even doing the LID so there you go on that one!!!  I didn't even do the LID until my 2000 scans and did not do the LID on any of my treatments--nor did most people treated before 1997 and most of us turned out fine.

I am a little surprised they gave Micayla a tracer dose.  A "noted" thyroid oncologist totally objects to this as a tracer dose can "stun" your thyroid remnant prior to treatment.  I will say that my surgeon gave me a tracer dose prior to my treatment but I thought it wasn't done anymore.  They didn't know about "stunning" back then.  

So you see, we all have some minor variations to our treatments and, for the most part, I believe all the doctors are doing what they believe is the best thing.


----------



## Christine

Just want to say to mrsklamc:  Good luck and know that we are with you today as you go through your treatment!!!


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## mrsklamc

Thanks! Thursday was the worst as promised but not too bad physically. I was PMS-ing right before treatment too and I think that was really exacerbating the hypo symptoms as I am feeling better today. I AM just so SICK of this LID at almost 3 weeks and even more frustrated that I don't know how sure they are that it helps.

They are releasing me Wed. At 11:15 AM from the diet and Heaven help anyone between me and whatever I crave most at that time!


----------



## Christine

mrsklamc said:


> Thanks! Thursday was the worst as promised but not too bad physically. I was PMS-ing right before treatment too and I think that was really exacerbating the hypo symptoms as I am feeling better today. I AM just so SICK of this LID at almost 3 weeks and even more frustrated that I don't know how sure they are that it helps.
> 
> They are releasing me Wed. At 11:15 AM from the diet and Heaven help anyone between me and whatever I crave most at that time!



Glad to hear things are going well for you.  I know the LID is awful.  FWIW, I do think it helps so just know that you have done the best for yourself and optimized your treatment.  You will never look back and say "Wow, I wish I had done better or had done the LID."  With cancer treatments you need to do all you can to make sure you get rid of it!!!

So what do you think you'll eat on Wednesday.  Most people routinely go for pizza or Mexican food!


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## mrsklamc

Thanks Christine! For about all of last week I REALLY wanted a cheeseburger and a milkshake, but Friday I was watching standup on comedy central and they kept showing commercials for the cheesy gordita crunch at Taco Bell- I think that's in the lead- it's the cheese that's really making this hard. Well, that and a symptom I wasn't expecting from being hypo since I'm eating so mnay fruits and vegetables.


----------



## Christine

mrsklamc said:


> Well, that and a symptom I wasn't expecting from being hypo since I'm eating so mnay fruits and vegetables.



I think I know what one you're talking about.  Not fun.  Everything just slows down so much, it is really unavoidable.


----------



## Christine

mrsklamc said:


> Thanks Christine! For about all of last week I REALLY wanted a cheeseburger and a milkshake, but Friday I was watching standup on comedy central and they kept showing commercials for the cheesy gordita crunch at Taco Bell- I think that's in the lead- it's the cheese that's really making this hard. Well, that and a symptom I wasn't expecting from being hypo since I'm eating so mnay fruits and vegetables.




So tell us--how was your iodine-laden afternoon?


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## mrsklamc

Honestly, I didn't pig out quite like I expected. My appetite still just isn't there.   But I did have a small sandwich with melted cheese on top and I do NOT know when anything has tasted SO good.


----------



## MariDisney

Hi everyone...I hope you don't mind if I pop in here.  I'll give you a little background about myself.  I'm 40 and my primary "issues" have been fertility related.  I was diagnosed as hyper abotu 2.5 years ago and went on tapazole for several months.  I couldn't stand my endo so I just stopped dealing with it.  Yes, I know that's crazy.  So, fast forward to a few months ago and I see my reproductive endo for one last push at fertility treatment.  He did standard bloodwork and my TSH came back as basically 0.  SO, off he sent me to the thyroid guy.  No fertility treatment til I get it worked out.

Saw the new endo (who I like) 4 weeks ago.  He ordered a million tests.  He basically said that if the thyroid is high it's coming out if I want to conceive.  Because of my age, there's no time to do the radiation and you shouldn't be PG on the meds.  A few days after my blood draw he called in tapazole, 20 mgs 2x/day.  SO, I've been on it about 3 weeks now.  I also had an ultrasound where they found 2 nodules.  Tomorrow I see the endo, and I'm sure he'll be sending me to the surgeon.  

So, I thought this would be a good place for me to come for support and info.  Hope you don't mind a new face!


----------



## mrsklamc

Welcome- I'm pretty new here myself, but I just wanted to say, I had my thyroid removed in October and I was terrified of the surgery- and it really wasn't too bad.


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## MariDisney

mrsklamc said:


> Welcome- I'm pretty new here myself, but I just wanted to say, I had my thyroid removed in October and I was terrified of the surgery- and it really wasn't too bad.



Thanks for the welcome.  Do you mind me asking how long you were in the hospital and how long you were out of commission?  I know the endo can tell me tomorrow, but I would love some real life experiences.


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## mrsklamc

Well, mine was removed at a surgery center and I was just there for overnight. Your recovery should be easier than mine because they had to take a lot of lymph nodes too, but I was home for 2 weeks and most of the 2nd was because I couldn't turn my head to drive on that one side. My incision was    Much larger than yours would need to be.


----------



## luvmarypoppins

welcome Mari and best of luck to you. My experience was very, um, unusual. I dont want to scare you with the details before your surgery, I am one of those one in a million, it could only happen to you people.

Micayla - I said a prayer for you when I was in disney and was online once and saw you were still sticking it out with the diet. I bet you feel great, food wise that is. Do you mind sharing what your actual rad. dose was. Mine was 200.

Next week I am going to the endo, she did alot of tests, not just thyroid stuff and I guess she will discuss them with me then, so I will have a little update to post next week, Last christmas, disney with cancer that I didnt even know about yet, and this year christmas in disney with dh and being in remission. God is Good. I even got to meet the beast and dh told belle I had stage 4 cancer


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## mrsklamc

My dose was 150. I am not as 'in heaven' foodwise as I had anticipated because I have a bit of a funny taste in my mouth.

Mari doesn't have cancer though so no reason for her to be scared.


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## luvmarypoppins

mrsklamc said:


> My dose was 150. I am not as 'in heaven' foodwise as I had anticipated because I have a bit of a funny taste in my mouth.
> 
> Mari doesn't have cancer though so no reason for her to be scared.



Did you try the sour lemon drops. They are also suppose to help your salivary glands post rai.


----------



## mrsklamc

luvmarypoppins said:


> Did you try the sour lemon drops. They are also suppose to help your salivary glands post rai.



I was instructed to do that the first two days after. I wonder if it would still help? I suppose it can't hurt anything.


----------



## MariDisney

mrsklamc said:


> My dose was 150. I am not as 'in heaven' foodwise as I had anticipated because I have a bit of a funny taste in my mouth.
> 
> Mari doesn't have cancer though so no reason for her to be scared.



Not scared!  Saw the endo today.  He felt like although there are "tons" of nodules (his words) on the thyroid, there is only 1 large enough to even be slightly concerned.  So, he's not ordering a biopsy now.  He said all that would tell him would be whether to take it out or not, and it's coming out!

I left today with
1. Instructions to make an appointment with surgeon.  I'm going to use Dr. Pezzi at Abington in the Phila suburbs.  I suppose the chance of anyone being familiar with him is slim, but who knows.  I called already and he can't see me til 1/26, but I'm ok with that.
2. Order for bloodword now that I have been on the tapazole for a few weeks.  Got it done as soon as I left the endo.  I'm supposed to call Monday to see if he wants to change the dose.
3. Prescription for "something" iodine (begins with an L I think) to take 5 drops 3 times a day for 10 days leading up to the surgery.  Anyone know what this is?
4. Prescription for synthroid (it says .125 g, but I can't read how many times a day.  Anyone know the usual?  Just curious.  Obiously this is for after the surgery.)
5.  Order for bloodwork after the surgery (various TSH, etc.)
6.  Call and make follow up appointment for 6 weeks after surgery unless calcium gets whacky in the hospital.

I know no one wants that detail, but I'm trying to organize my thoughts.  

Thanks to all who have offered support!


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## mrsklamc

Can you read what the script does say? I used to be a pharmacy tech so I may be able to tell you; it may not have a number. 

I imagine it's probably one tablet daily though. That's the dose they started me out on, too.


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## MariDisney

mrsklamc said:


> Can you read what the script does say? I used to be a pharmacy tech so I may be able to tell you; it may not have a number.
> 
> I imagine it's probably one tablet daily though. That's the dose they started me out on, too.



The Synthroid script says 0.125 g (or maybe mg?) looks like a division sign LOL then tab po and maybe "in"   also says #90, which I think means 90 pills.  Why can't they write neatly?

The other one says Lyol's (I THINK) Iodine solution some strange stuff  then I think tid(three times a day, right?) then "in juice" 10 days before surgery.  Actually it is an a with a line over it, but I had enough latin to figure out he means ante/before, right?  LOL

SO, any input on either would be great.  Never heard of this second one.  The Synthroid I did expect.  He also did sign the brand medically necessary line on the Synthroid.  I don't believe I've ever had that on a prescription before.  I've usually had generics.  Hmmmm...


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## mrsklamc

The other drug I'm not familiar with but with the synthroid without physically seeing it I would say that it is, one tablet by mouth daily. Of course, the pharmacy will print it on the bottle for you.

AND from my days as a pharmacy tech, I will tell you that it is VERY normal for synthroid to be brand name only/dispense as written. Our bodies are SO sensitive to thyroid and this is unique among drugs in that the generics just aren't as consistent as the brand in the dose strength. Fortunately, synthroid is pretty cheap.


----------



## MariDisney

mrsklamc said:


> The other drug I'm not familiar with but with the synthroid without physically seeing it I would say that it is, one tablet by mouth daily. Of course, the pharmacy will print it on the bottle for you.
> 
> AND from my days as a pharmacy tech, I will tell you that it is VERY normal for synthroid to be brand name only/dispense as written. Our bodies are SO sensitive to thyroid and this is unique among drugs in that the generics just aren't as consistent as the brand in the dose strength. Fortunately, synthroid is pretty cheap.



Thanks for trying!  I know they'll put it on the bottle, and I'll call if I'm confused.  

Interesting about the Synthroid.  I'm learning so much!


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## mrsklamc

Having another 'low' day today. Nothing like being hypo, just kinda sad. Is this normal while adjusting? The bad part is not knowing the difference between hormones and just plain moodiness!


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## luvmarypoppins

Got *great* news!! The endo said my blood tests were great! The TSH is practically undetectable, so the cancer is staying away!! Dh commented to her that he thinks I am too hyper, she said she could tweek my meds after the nuclear scan. I said I would rather leave them where they are and deal with the hyper. I am scheduled to go to the rad. onc in June but she thinks that is too late, she wants me to call and reschedule and she said she is not sure but thinks I wont need the diet for the scan??? I tld her I dont think this is right, is it christine?? I also have a one year post op surgical follow up in Feb. and then and endo visit, blood test and neck ultrasound in March.


----------



## jennz

luvmarypoppins said:


> Got *great* news!! The endo said my blood tests were great! The TSH is practically undetectable, so the cancer is staying away!! Dh commented to her that he thinks I am too hyper, she said she could tweek my meds after the nuclear scan. I said I would rather leave them where they are and deal with the hyper. I am scheduled to go to the rad. onc in June but she thinks that is too late, she wants me to call and reschedule and she said she is not sure but thinks I wont need the diet for the scan??? I tld her I dont think this is right, is it christine?? I also have a one year post op surgical follow up in Feb. and then and endo visit, blood test and neck ultrasound in March.



  Woo hoo!  Merry Christmas - great news! 

I haven't had to do the diet for my scans, but I haven't had one in three years so I thought this might be new.


----------



## Christine

mrsklamc said:


> Having another 'low' day today. Nothing like being hypo, just kinda sad. Is this normal while adjusting? The bad part is not knowing the difference between hormones and just plain moodiness!



It takes a good 6 weeks to start feeling yourself.  Even then, your TSH won't be at optimal levels.  It's tough coming back up to normal.  You always think it's going to happen much faster than it does.


----------



## Christine

luvmarypoppins said:


> Got *great* news!! The endo said my blood tests were great! The TSH is practically undetectable, so the cancer is staying away!! Dh commented to her that he thinks I am too hyper, she said she could tweek my meds after the nuclear scan. I said I would rather leave them where they are and deal with the hyper. I am scheduled to go to the rad. onc in June but she thinks that is too late, she wants me to call and reschedule and she said she is not sure but thinks I wont need the diet for the scan??? I tld her I dont think this is right, is it christine?? I also have a one year post op surgical follow up in Feb. and then and endo visit, blood test and neck ultrasound in March.



luvmarypoppins--

Did you mean the "thyroglobulin" was undetectable, so the cancer is staying away?  Thyroglobulin is the cancer marker.  TSH only shows how much thyroid hormone you have.  I'm thinking you meant Thyroglobulin in which case that is FANTASTIC news!

As for not doing the LID prior to scans, I've not heard of any doctor these days skipping that.  I would probably ask her why she thinks it is okay not to.  She may have a very good reason for it.


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## MariDisney

I finally was able to have my appointment with the surgeon today.  It  was like 6 weeks.  Ugh!  Anyway, my surgery is scheduled for Feb. 10th (so 2 weeks away).  I need to see my primary next week for some pre-surgical appointment.  Not sure what that will entail as I've had tons of blood work in the past 2 months.

The endo upped my tapazole to 60 mg/day mid-December.  So, that's what I've been on.  I also have Lugol's Iodine solution to begin taking 5 drops, 3 times per day starting 10 days before the surgery.   I've heard cranberry juice is the best thing to hide the taste of that.  Any experience with that?

My surgery is on a Weds., so my current plan is to be off work for the full wee after that and go back Monday the 22nd.  Does that seem reasonable to those of you who have had the surgery?  I'd rather NOT be out that long.  I'm self employed and have no sick time, of course.  So, there will be no income at all for that time frame, which stinks for me.  But, it doesn't seem like shorter will work.

Any other words of advice?  Should I plan on soft foods for several days?  Will I want to just lay on the couch for awhile?  Clue me in as to what your recovery from the surgery (it will be near-total) was like.

Thanks!


----------



## KAMLEM

MariDisney said:


> I need to see my primary next week for some pre-surgical appointment. Not sure what that will entail as I've had tons of blood work in the past 2 months.


My pre-op with my primary care dr. was pretty simple. The only thing he did really was check my blood pressure and do an EKG.



MariDisney said:


> My surgery is on a Weds., so my current plan is to be off work for the full wee after that and go back Monday the 22nd. Does that seem reasonable to those of you who have had the surgery? I'd rather NOT be out that long. I'm self employed and have no sick time, of course. So, there will be no income at all for that time frame, which stinks for me. But, it doesn't seem like shorter will work.


I had an easy recovery. I actually did some work from home on the afternoon of my surgery. My surgery was at 7:30 a.m. and I was home by noon. I was only out of work for a few days, mainly because I could not drive.


----------



## MariDisney

KAMLEM said:


> My pre-op with my primary care dr. was pretty simple. The only thing he did really was check my blood pressure and do an EKG.
> 
> I had an easy recovery. I actually did some work from home on the afternoon of my surgery. My surgery was at 7:30 a.m. and I was home by noon. I was only out of work for a few days, mainly because I could not drive.



Thanks...that is encouraging.  The doctor said 1-3 weeks, but i like your recovery better!!!


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## mrsklamc

I was out for two weeks but that was only because I have a HUGE scar from having all the lymph nodes removed, and couldn't turn my head to drive. Since you are having the smaller incision I bet you will be fine in one week!


----------



## cassiez76

i just found this thread...wanted to say hi 

i've had a low thyroid for 12 years now (started when i was around 20/21-ish). i'm on 150mg of the generic for levoxyl. i started at .5mg 12 years ago  

usually cold, tired, gain weight when it's off and get it checked every 6 months. 

my mom is on like .5mg now. i guess it's just apart of the family. we had a cat that also had thyroid problems! 

my mil had to have hers removed (they were the size of kidneys!). so far hubby is the only one without thyroid problems. 

gonna subscribe!


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## mrsklamc

I thought I had been doing really well- blood levels were 'normal' at my first follow up so they bumped me up to 150. I also was pleased to get rid of my initial endo and get in to see one who is well- known around here.


Saturday I woke up with an ear infection and have been feeling 'off' since then. I don't know how that would effect my thyroid but I have not been myself. The nurse practitioner I saw was shocked they let me get so hypo- she said they test weekly after surgery and schedule you for the week after you hit  a TSH of 20. I HATE thinking I went through that last week of misery for nothing.


----------



## mrsklamc

March's Real Simple has an article about how your hormones affect you during different decades of your life. In the intro it says "Your thyroid controls your metabolism."

I'd just LOVE to give them a little lesson on what it affects BESIDES your metabolism. That got me thinking- I suppose because it's so highly curable, but you're forever seeing stuff about breast cancer, lung cancer, etc- little to nothing about your thyroid. It sure as heck had never occurred to ME before.


----------



## luvmarypoppins

mrsklamc said:


> March's Real Simple has an article about how your hormones affect you during different decades of your life. In the intro it says "Your thyroid controls your metabolism."
> 
> I'd just LOVE to give them a little lesson on what it affects BESIDES your metabolism. That got me thinking- I suppose because it's so highly curable, but you're forever seeing stuff about breast cancer, lung cancer, etc- little to nothing about your thyroid. It sure as heck had never occurred to ME before.



Amen Micayla!! Not too long ago I read an article about some new actress on the show 24. She just had thyroid cancer surgery too. But I hated her one comment, something like "I had one of the better ones.!! OMG missy aka that actress, let me tell you. I saved it and feel like looking her up and firing off an e mail. Its not one of the "better" ones when you have stage 4 like me and on top of that the rare variant!1 Oh well, at least thyroid cancer got a little press, so I should be positive, Hmm, maybe if we all sent her e mails we could get her to be a spokesperson?? What do you think??  On another note I am going to the surgeon for a 1 year check up tommorrow. I am going to be talking prognosis. I assume he will say nothing as usual. Happy Valentines Day everyone.


----------



## mrsklamc

I did see that article. I don't watch 24 but my friend thinks her character is going to die soon.

It struck me how differently people deal with things. She said she is still in therapy a year later. Therapy never occurred to me personally. Maybe if it was more like yours, LuvMaryPoppins, or if I had been diagnosed when I was younger and still thought I was invincible.


----------



## MariDisney

Hi everyone,

I had my surgery this past Weds. (2/10) as planned, and am doing pretty well.

We were worried at first because the Philadelphia area had 2 back to back 24 + inch snowstorms, but I talked to the doctor's office the before and we agreed that we'd both make it to the hospital.  Luckily, people scheduled for the OR before me cancelled because of the storm, so I got to go earlier than originally planned.

The surgery itself lasted about 2 hours longer than they expected (about 4.5 hours).  I don't remember the doctor saying why other than "that thyroid was really ugly", but I will find out at my follow up.  The first night in the hospital was really rough.  My voice wasn't coming as quickly as the doctor expected, although he was sure he preserved the laryngeal nerves.  I think part of the problem was that my back was SO sore from being in a bad position during the surgery and then not being able to get into a good position in the bed.  I couldn't get the fluid coughed out of my lungs.  Weds. was a long night.  I know someone on here has said they went home a few hours after their surgery.  There was NO WAY I could have, even if I wanted to.  Also, they drew blood every 6 hours or so (calcium checks).  So, I wonder how that worked for the person who went home right away.

By Thurs. morning I felt significantly better.  My throat was very very sore because of the breathing tube, and so I could only eat a bit.  Swallowing was hard, but as the day progressed it got much better.  Interestingly, this didn't seem to have to do with the incision, but the length of time and position of the breathing tube.

I did come home late Thurs. afternoon.  The dr. said I could stay at the hospital Thurs. night if I wanted to, but I needed to get home where I knew DH could get me in a comfortable position.  Once I was all propped up and really clearning my lungs my voice came back to about 70% strength I'd say.  They did send me home with a spirometer to continue to work on my lungs.

They sent me home with percoset, but the pain hasn't been too bad.  I have taken I think 4 since Thursday.  (It's late Sunday afternoon now)  I am eating almost normally.  My throat still doesn't feel 100%, so I'm taking it a bit easy.  

My energy is fair.  I am mostly laying around resting, but am up every so often and am able to shower, etc.  I started the synthroid (125 mg) today.  So, we'll see how that goes.

In terms of work, I scheduled myself off all week (I am self employed).  I couldn't drive yet, I'm sure because I can't yet turn my head fully each way.  But, I bet I will be able to in several days. I just don't want to rush anything.  I probably COULD be catching up on paperwork, etc.   But, I don't think I will. LOL

So, now that I've been through the surgery (near total, he said he left a tiny bit of thyroid on each side) I'd be happy to answer any questions for people facing it.  I look forward to continued support as my levels get regulated, etc.

One thing, so silly I know, that suprised me, was that I needed heparin shots in my stomach every 12 (or was it 8?) hours in the hospital.  It wasn't bad, but the thought of it skeeves me out, and I had about 4.  Unpleasant and surprising, but not a giant deal.


----------



## luvmarypoppins

Mari - glad to hear that your surgery went well and you are on your way to healing and recovery. Do you have the staples and drain? My cousins ds goes to univ. of the sciences and they said they got a ton of snow up there! I refuse the heparin shots, after they gave me one in my upper arm I broke out with huge black and blues. They think I could also have some kind of clotting disorder or I am sre some other rare or strange thing that I dont want to know about at this time. I know the heparin is standard post surgical protocol. I guess I refuse to go into the protocol box, so I just get up and walk around alot.  Wishing you all the best.


----------



## mrsklamc

luvmarypoppins said:


> Mari - glad to hear that your surgery went well and you are on your way to healing and recovery. Do you have the staples and drain? My cousins ds goes to univ. of the sciences and they said they got a ton of snow up there! I refuse the heparin shots, after they gave me one in my upper arm I broke out with huge black and blues. They think I could also have some kind of clotting disorder or I am sre some other rare or strange thing that I dont want to know about at this time. I know the heparin is standard post surgical protocol. I guess I refuse to go into the protocol box, so I just get up and walk around alot.  Wishing you all the best.



Huh. I didn't have heparin at all- they didn't say anything about it either. But they had these boots squeezing my legs so maybe that's why.


----------



## MariDisney

mrsklamc said:


> Huh. I didn't have heparin at all- they didn't say anything about it either. But they had these boots squeezing my legs so maybe that's why.



I had the boots too!!  Actually, I thought they were kind of relaxing.


----------



## MariDisney

luvmarypoppins said:


> Mari - glad to hear that your surgery went well and you are on your way to healing and recovery. Do you have the staples and drain? My cousins ds goes to univ. of the sciences and they said they got a ton of snow up there! I refuse the heparin shots, after they gave me one in my upper arm I broke out with huge black and blues. They think I could also have some kind of clotting disorder or I am sre some other rare or strange thing that I dont want to know about at this time. I know the heparin is standard post surgical protocol. I guess I refuse to go into the protocol box, so I just get up and walk around alot.  Wishing you all the best.



No staples or drain.  I guess I have regular stitches that will desolve on their own (if they were staples, they wouldn't do that, right?).  It's all covered in steri strips at the moment.  They had a thick dressing on it for about 18 hours in the hospital.

I didn't really know anything about heparin before going in, and so hadn't considered the possibility.  It wasn't terrible, and I have a slight fear of blood clots (irrational as I have no  risk factors that I'm aware of), so it wasn't something I was prepared to refuse.  It was fine, just surprising.  They did say giving it in the stomach causes better absorbtion and less pain or chance for bruising.  So, it was fine.  I really was in no condition to walk for nearly 20 or more hours, so in the end it probably was a good thing to have.


----------



## KAMLEM

MariDisney said:


> I know someone on here has said they went home a few hours after their surgery. There was NO WAY I could have, even if I wanted to. Also, they drew blood every 6 hours or so (calcium checks). So, I wonder how that worked for the person who went home right away.


I think that was me you're referring to. My surgery was at 7:30 a.m. and I left the hospital by 11:30 a.m. I had no drains or staples, my incision was about 3 inches long and very thin. I only wore a bandage for a few days. I was doing work from home that same afternoon, I felt fine. The next couple of days I was a little sore but that's it. I had a great surgeon. He said that he has done more thyroidectomies than almost anyone else in the area.


----------



## mrsklamc

Do you guys really not feel your weight is affected by the synthroid? Everything says that it doesn't affect it but my body sure seems to do weird things it didn't do before my surgery.


----------



## MariDisney

KAMLEM said:


> I think that was me you're referring to. My surgery was at 7:30 a.m. and I left the hospital by 11:30 a.m. I had no drains or staples, my incision was about 3 inches long and very thin. I only wore a bandage for a few days. I was doing work from home that same afternoon, I felt fine. The next couple of days I was a little sore but that's it. I had a great surgeon. He said that he has done more thyroidectomies than almost anyone else in the area.



Yes, Shari...I think I was referrring to you.

Just curious if they checked your calcium?  That seemed to be a primary concern and I had at least 3, maybe 4 blood draws over the 24 hours after the surgery to make sure my levels were stable.


----------



## tinkerbellang

Mari - I had my 2nd thyroid surgery last March and it took me 2 weeks to get back to where I didn't have to have a nap every couple of hours!  

Now - I have a question regarding the thyrogen.  My endo didn't decide I needed RAI until December, after my surgery in March.   Had the first round of thyrogen for "investigative" purposes - scan in November, then thyrogen again for RAI purposes in December.  Told me thyrogen worked really well for me the first time - TSH was over 200!!  Second round - the second shot made me so nauseus and I felt horrible for the next 2 weeks.  Has anyone else had that problem??  After two weeks then I could only sleep for 3 hours at a time, then I'd wake up and couldn't go back to sleep, then feel so tired. 

Anyway - I have been on the same dosage of levothyroxin since before my surgery.  I haven't been tested again since the RAI - and I'm having almost every hypo symptom you can have.  Is this normal?  or should my endo have tested me 6 weeks after RAI??  

Unfortunately, my endo left town 3 weeks ago, and I'm going to have to call his partner, whom I've never seen!   

Just info from others who may have had the same experience would be nice!  Thanks.


----------



## mrsklamc

tinkerbellang said:


> Mari - I had my 2nd thyroid surgery last March and it took me 2 weeks to get back to where I didn't have to have a nap every couple of hours!
> 
> Now - I have a question regarding the thyrogen.  My endo didn't decide I needed RAI until December, after my surgery in March.   Had the first round of thyrogen for "investigative" purposes - scan in November, then thyrogen again for RAI purposes in December.  Told me thyrogen worked really well for me the first time - TSH was over 200!!  Second round - the second shot made me so nauseus and I felt horrible for the next 2 weeks.  Has anyone else had that problem??  After two weeks then I could only sleep for 3 hours at a time, then I'd wake up and couldn't go back to sleep, then feel so tired.
> 
> Anyway - I have been on the same dosage of levothyroxin since before my surgery.  I haven't been tested again since the RAI - and I'm having almost every hypo symptom you can have.  Is this normal?  or should my endo have tested me 6 weeks after RAI??
> 
> Unfortunately, my endo left town 3 weeks ago, and I'm going to have to call his partner, whom I've never seen!
> 
> Just info from others who may have had the same experience would be nice!  Thanks.



Wow. Seems like this is more of an art than a science? I don't understand why they would do that...They should have known right away if you had cancer, and if so why would they wait to do RAI so long? Weird.


----------



## tinkerbellang

My whole thyroid issues have bizarre to say the least! 

First pathology didn't say it was cancer - it wasn't until 6 weeks later that I got that diagnosis.  Let me give you a pre-trip  . . . LOL

In 2003 I had the right side removed - was diagnosed with thyroid nodules (hot) in 1990.  After doing so much research - I really think I had thyroiditis in 1986 - while I was in college - was treated for a throat infection.  Anyway - I battled with up and down thyroid levels for those 13 years.  Finally my TSH and T4 were going in the same direction - UMMM not good!  So, dr said lets take it out.  Fine - left side was very small and no nodules so it was left.  

After first surgery was the first time in my life I had ever had normal cycles!!  I was on the same dosage from 2003 until 2008.  My endo (I've gone through 4) again left town (bad joke in my town) so was back to my GP to keep my meds. He did test me every 6 months - which I was very glad for.  In June 08 I went for my semi-annual - and my TSH levels were down from 1.5 to 0.3.  Hey I was feeling pretty good.  Instead of lowering my meds, he decided to leave it up and maybe it would help lose weight.  And I did lose about 15 lbs.  But in October I started feeling HORRIBLE!!  Passed out at work, heart rate through the ceiling, no energy, you all know the drill.  When I went in December for my semi-annual, my TSH had shot up to 3.9, and he increased my meds.  

Also did a radio-stress test - which showed a "hyperdynamic left ventrical" - cardiologist said it was nothing to worry about.  I finally decided I needed to see the new endo.  Best decision I ever made.  First ultrasound - NODULE on the small (no longer small) left side.  He said we would watch it, do another ultrasound, etc.   I immediately asked for surgery.  Told him with my long battle on the right side and I didn't want to go through that again.  

When the pathologist report came back, he sent it to Mayo - because there was an "iffy" statement.  Came back papillary - 1.5mm - yes not cm - mm.  Dr kept asking if I just had a gut feeling - since I asked for surgery!  He said since it was so small that RAI wasn't necessary.  But did do a cancer markers blood test - which came back elevated.  Had another one in August - more elevated, and then scan in November - showed activity.  So - RAI.  

Now I'm feeling horrible again - so I'm figuring need to up the meds.  And see ANOTHER endo.  Hoping he will let me keep my TSH below .5 like my previous dr - that's when I feel the best.  Could it be that the left over tissue was actually producing T4?? 

So, yea - it's been an "art" form!  LOL


----------



## luvmarypoppins

mrsklamc said:


> Do you guys really not feel your weight is affected by the synthroid? Everything says that it doesn't affect it but my body sure seems to do weird things it didn't do before my surgery.



My weight has stayed about the same the last year. I just went to the surgeon today. My endo has not adjusted the meds except once since the surgery. She is keeping me hyper. And now I am going to do the diet in May for 2 weeks for the nuclear scan, so hello LID and good bye another 20 lbs. I bet.


----------



## tinkerbellang

Yes, the LID will take it off - I think more because there's just not a lot to eat!  

Good luck!  I don't have to have another scan for 11 months!


----------



## mrsklamc

Wow! I didn't lose during the LID at ALL! I think my metabolism was just completely non resposive. I lost five pounds during the week the endo had me on cytomel right after surgery, but it came right back and has stayed there ever since.


----------



## luvmarypoppins

tinkerbellang said:


> Mari - I had my 2nd thyroid surgery last March and it took me 2 weeks to get back to where I didn't have to have a nap every couple of hours!
> 
> Now - I have a question regarding the thyrogen.  My endo didn't decide I needed RAI until December, after my surgery in March.   Had the first round of thyrogen for "investigative" purposes - scan in November, then thyrogen again for RAI purposes in December.  Told me thyrogen worked really well for me the first time - TSH was over 200!!  Second round - the second shot made me so nauseus and I felt horrible for the next 2 weeks.  Has anyone else had that problem??  After two weeks then I could only sleep for 3 hours at a time, then I'd wake up and couldn't go back to sleep, then feel so tired.
> 
> Anyway - I have been on the same dosage of levothyroxin since before my surgery.  I haven't been tested again since the RAI - and I'm having almost every hypo symptom you can have.  Is this normal?  or should my endo have tested me 6 weeks after RAI??
> 
> Unfortunately, my endo left town 3 weeks ago, and I'm going to have to call his partner, whom I've never seen!
> 
> Just info from others who may have had the same experience would be nice!  Thanks.



The 2nd thyrogen made me so totally sick too. I think I took some tylenol. I couldnt even eat anything. Maybe some gingerale. Good because I was getting so sick of that LID too. I didnt have any long lasting problems because of the thyrogen, Did you discuss this with the endo?  My endo tests my blood every 3 months no matter what. I cant remember the 6 week blood test after the RAI, I might have or might not have. I do know I had to have one like 2 days after. Wishing you all the best.


----------



## mrsklamc

Wow. If thyrogen made you guys that sick I think I'd almost rather be hypo.


----------



## KAMLEM

MariDisney said:


> Yes, Shari...I think I was referrring to you.
> 
> Just curious if they checked your calcium? That seemed to be a primary concern and I had at least 3, maybe 4 blood draws over the 24 hours after the surgery to make sure my levels were stable.


They didn't check it all in the hospital.


----------



## mrsklamc

They checked my calcium but the surgeon stated that it was because she had 'bruised' my parathyroid. I don't know if they would have otherwise.


----------



## MariDisney

mrsklamc said:


> They checked my calcium but the surgeon stated that it was because she had 'bruised' my parathyroid. I don't know if they would have otherwise.



It's so interesting how everyone's experiences are varied.  My surgeon (the chief of oncological surgery at a large hospital) told me right from the beginning that they monitor the calcium "just in case" something may have inadvertently happened to a parathyroid.  In fact, my endo told me that as well when he was referring to the surgeon.


----------



## mrsklamc

Ok ladies- what do you think?

I have been very excited to get into the much-loved local endocrinologist. Everyone who goes to her loves her (including someone on this very thread.)

I have an acquaintance who is participating in medical trials- she's been very overweight and they've put her on a new diabetic drug and the pounds have just been falling off. The dr. she sees is the head of endocrinology at a major hospital here and has excellent credentials. She says he isn't taking new patients off the street but she can get me in to see him. What do you think? Should I just meet with both of them and see what they say/who I like best?


----------



## MariDisney

mrsklamc said:


> Ok ladies- what do you think?
> 
> I have been very excited to get into the much-loved local endocrinologist. Everyone who goes to her loves her (including someone on this very thread.)
> 
> I have an acquaintance who is participating in medical trials- she's been very overweight and they've put her on a new diabetic drug and the pounds have just been falling off. The dr. she sees is the head of endocrinology at a major hospital here and has excellent credentials. She says he isn't taking new patients off the street but she can get me in to see him. What do you think? Should I just meet with both of them and see what they say/who I like best?



If you have an opportunity to meet with them both within a reasonable time frame and at reasonable cost then I would do that.  Seems like a win win situation.  My main question to the medical trial one is whether you can be treated for the big picture in terms of your endocrine system or whether you'll be limited ot trialing that particular drug.  Personally, I'd be very wary of getting into a control/placebo group (which you wouldn't know most likely) when trying to control these kinds of things.  I'd have a ton of questions ready before agreeing to a trial.


----------



## mrsklamc

I'm not interested in a medical trial so much as a good doctor. I'll be honest- I was diagnosed with Poly Cystic Ovarian Syndrome the same day that they were first suspicious of my thyroid- I was trying to get pregnant. My first endo said wait a year- between the PCOS and turning 30 this year, I don't feel like I HAVE a year. I know there are some docs who will let you try after 6 months, and if one of these will, well, they probably win.


----------



## MariDisney

mrsklamc said:


> I'm not interested in a medical trial so much as a good doctor. I'll be honest- I was diagnosed with Poly Cystic Ovarian Syndrome the same day that they were first suspicious of my thyroid- I was trying to get pregnant. My first endo said wait a year- between the PCOS and turning 30 this year, I don't feel like I HAVE a year. I know there are some docs who will let you try after 6 months, and if one of these will, well, they probably win.



I also have PCOS...and actually the way I got involved in looking at my thyroid, etc. is because we were back looking into fertility treatments this fall.  I am about to turn 41.  So, I know it's HARD HARD HARD but know you do have a a little bit of time.  I agree, I wouldn't wait a year if I didn't have to, but going through all the fertility stuff is a nightmare.  If they think you have a chance of conceiving naturally, I would try and give it 6 months if you hacen't already.


----------



## jennz

I'd say definitely meet with both.  My first endo I went to when I moved was "wonderful" "fabulous" etc - I didn't like her.  Hope that helps!


----------



## Christine

Re:  Thyrogen making you sick.  Thyrogen has always made me kind of queasy.  On my third round of thyrogen, after the 2nd shot, I had an "episode" late in the evening.  I had what can only be called a tremendous hot flash, rapid heart rate (around 160), and just terrible uncomfortable.  This lasted 2-3 hours.  I was scared.  Should've gone to the ER but that scares me more.

I won't use Thyrogen again.  My new endo has said that he has noted that patients can become more sensitive to it with each round.  Next time I am withdrawing from med for 3 weeks so we can get an stimulated Tg test.  But, ladies, I am 15 years out from my diagnosis and I would not have all this freedom of choice if I were new to thyroid cancer.

As for new endos--the important issue is to find an endo that has a BIG thyroid cancer patient population.  Many endos seem to specialize more in diabetes.  Find the one that takes the special interest in thyroid and thyroid cancer.  That's where you want to be.  The "good" endo in my town is all the rage with diabetics.  He wasn't that great with thyroid cancer.


----------



## KAMLEM

mrsklamc said:


> I was diagnosed with Poly Cystic Ovarian Syndrome the same day that they were first suspicious of my thyroid- I was trying to get pregnant. My first endo said wait a year- between the PCOS and turning 30 this year, I don't feel like I HAVE a year. I know there are some docs who will let you try after 6 months, and if one of these will, well, they probably win.


I never had regular cycles, I'd go 4 or 5 months without one, and I had to take clomid to get pregnant. About 4 years ago I just stopped getting my period. My dr. said it could be PCOS but she just wasn't sure. Last fall we finally got my thyroid levels where they should be, more than a year after my surgery. Low and behold in November I got my period! I have had it every month since then. I have never been this regular and I really believe that it was due to my thyroid for many years.


----------



## luvmarypoppins

mrsklamc said:


> Ok ladies- what do you think?
> 
> I have been very excited to get into the much-loved local endocrinologist. Everyone who goes to her loves her (including someone on this very thread.)
> 
> I have an acquaintance who is participating in medical trials- she's been very overweight and they've put her on a new diabetic drug and the pounds have just been falling off. The dr. she sees is the head of endocrinology at a major hospital here and has excellent credentials. She says he isn't taking new patients off the street but she can get me in to see him. What do you think? Should I just meet with both of them and see what they say/who I like best?



I would meet with both of them. I am assuming they both take your insurance? I was given the names of about 4 or 5 endos from the large univ. hosp. group. When I called to make an appt. they said 2 wouldnt even see me (too many patients and too long a wait - months), I had the opportunity to also look them up with all info, on the hospital website. I chose a female who was new to the group. I still had to wait for her a while too. They told me even if I didnt like her I could NOT switch to one of the other ones since their policy is that the doctor has to "learn" your case etc. 

On another note. I went to the ent surgeon for a one year check up. I still now have to go back to physical therapy because my arm is not good and he said the nerve has not come back yet. I told him I will try a different place this time and I asked him what my prognosis was. Even with the stage 4 and  columnar cell, he thinks I have a 90% chance for 10 years, Praise God!! We also discussed his surgical plan if it comes back. I still am so confused as to why all the drs. cant be on the same page with me, the rad. onc. says nothing, the other ent surgeon never had a patient with this and the endo thinks its coming back in about 3 years. Hmm, I think I will go with the best one for now??


----------



## mrsklamc

Jennz- I actually think once upon a time you told me one of them was your endo- Dr.A?


----------



## mrsklamc

Christine said:


> As for new endos--the important issue is to find an endo that has a BIG thyroid cancer patient population.  Many endos seem to specialize more in diabetes.  Find the one that takes the special interest in thyroid and thyroid cancer.  That's where you want to be.  The "good" endo in my town is all the rage with diabetics.  He wasn't that great with thyroid cancer.



Someone told me that the 'popular' endo specializes in PCOS, but she herself has HAD thyroid cancer, and another person I know ( the rare male actually) really liked the way she handled his thyroid cancer as well. I meet with her a week from today so hopefully it works out well.


----------



## Christine

mrsklamc said:


> Someone told me that the 'popular' endo specializes in PCOS, but she herself has HAD thyroid cancer, and another person I know ( the rare male actually) really liked the way she handled his thyroid cancer as well. I meet with her a week from today so hopefully it works out well.




The doctor that treated me was not actually an endo.  He was an Internal Medicine doctor that treated diabetics and took a special interest in thyroid cancer because he had it himself.  Very good combination!


----------



## jennz

mrsklamc said:


> Jennz- I actually think once upon a time you told me one of them was your endo- Dr.A?



Yep that's her.    Definitely keep your appointment, she schedules 6 months out for existing patients!


----------



## Poohbear5

Hi all!

I was just diagnosed with hypo this week and started on low dose and they will reevaluate the dose of sythroid every 6  weeks to get the right dosage. 

How long will it take my hair to regrow??
Out of all the symptoms, that's really bugging me the most!

Any one else get a foggy eye as a result of being hypo? Doc said she was pretty sure that was from thyroid but not 100% so we'll have to wait and see.


----------



## kathleena

Poohbear5 said:


> Hi all!
> 
> I was just diagnosed with hypo this week and started on low dose and they will reevaluate the dose of sythroid every 6  weeks to get the right dosage.
> 
> How long will it take my hair to regrow??
> Out of all the symptoms, that's really bugging me the most!
> 
> Any one else get a foggy eye as a result of being hypo? Doc said she was pretty sure that was from thyroid but not 100% so we'll have to wait and see.



Hi hon!  I can't answer about the hair, but I hope you are feeling better soon!

About the eye - I had  eye changes before I was diagnosed.  My left eye is the most affected and I guess I would call it foggy.  BUT - it is a result of TSI antibodies which cause Graves disease (hyper).  I was hypo first and then went hyper a couple of years later.  I was on synthroid for 2 years, but the numbers wouldn't stabilize because of the TSI antibodies.  I'm now treated for Graves (with anti-thyroid drugs, not RAI) and am in remission.  Now on .75/1.0 levothyroxine and am stable.

So my questions beyond the foggyness - do you notice any change in your eye - like is is bigger/wider than the other one (more of the color showing?), do you have any dryness (symptom would be your eye watering, which is opposite what you would think)?  If you have either of these, it could be TSI.

Anyway - ask your doctor to check the hypo antibodies if she hasn't already and talk with her about TSI antibodies.  My PCP didn't know about the TSI antibodies so she didn't test them.  It is not a cheap test.  Another option is to see an opthamologist that specializes in thyroid eye disease.  I see one because the TSI levels were still high and he was watching my eyes for changes.  If you have antibodies, be sure you read about them so you know what they are and make sure they are being monitored along with your TSH.

Oh and just FYI, someone can have both antibodies (one that causes hypo, one that causes hyper) and they cancel each other out keeping the thyroid stable - but they antibodies can still cause harm elsewhere - like the TSI harming the eyes.

Good luck hon!


----------



## Poohbear5

_So my questions beyond the foggyness - do you notice any change in your eye - like is is bigger/wider than the other one (more of the color showing?), do you have any dryness (symptom would be your eye watering, which is opposite what you would think)? If you have either of these, it could be TSI.

Anyway - ask your doctor to check the hypo antibodies if she hasn't already and talk with her about TSI antibodies. My PCP didn't know about the TSI antibodies so she didn't test them. It is not a cheap test. Another option is to see an opthamologist that specializes in thyroid eye disease. I see one because the TSI levels were still high and he was watching my eyes for changes. If you have antibodies, be sure you read about them so you know what they are and make sure they are being monitored along with your TSH._

Wow! Guess I'd better do more reading to know what all these terms are. I requested and received my labs in yesterday's mail but not sure what all the numbers mean yet. 

My eye doesn't look bigger (to me anyway) just feels foggy and dry. I have an appt. with an opthtamologist in 2 weeks.

Is there a good site that you can direct me to get easy to understand info. about thyroids and what the tests and numbers mean?


----------



## mrsklamc

Poohbear5- I'm sorry, I don't know of a good website for you.

My appointment with the new endo is tomorrow, I have a LIST of questions, I hope it goes well!


----------



## luvmarypoppins

And speaking of "eye" problems

My L eye is now tearing every now and then. I am going to the endo next month. Is this something that happens post RAI or could it be a med thing? My synthroid has been the same for about a year.  Anyone else have this problem?

Micayla - can you give us a little update of your drs. visit? Hope all went well and that you got all your questions answered and that you like the dr. too and feel comfortable with him/her.


----------



## mrsklamc

luvmarypoppins said:


> And speaking of "eye" problems
> 
> My L eye is now tearing every now and then. I am going to the endo next month. Is this something that happens post RAI or could it be a med thing? My synthroid has been the same for about a year.  Anyone else have this problem?
> 
> Micayla - can you give us a little update of your drs. visit? Hope all went well and that you got all your questions answered and that you like the dr. too and feel comfortable with him/her.



I hope you get that straightened out. Could even just be allergies.

I am so goofy- My appointment is actually TOMORROW at 4. I will let you know how it goes!


----------



## kathleena

Yes, RAI can result in some thyroid eye disease symptoms

Here's a website.  http://thyroid.about.com/gi/o.htm?z.../www.thyroid-info.com/articles/thyroideye.htm

And reading for TSI antibodies, most of it is pretty "medical" but here's some stuff

http://www.hopkinsmedicine.org/endocrine/graves/TopicAnswer.asp?QuestionID=22


http://thyroid.about.com/cs/hyperthyrdgraves/a/10things.htm

Here's a good forum for questions, Elaine Moore is great.

http://forums.about.com/ab-thyroid2


----------



## Poohbear5

Thanks for those website links!


----------



## MariDisney

I had my surgery follow up this morning.  Much to my surprise they did find some cancer in the thyroid.  Thankfully, it was small (3.5 mm).  There were also some smaller "just starting" spots (I forget what he called that).  The surgeon was very reassuring about the fact that it's gone and that should be the end of it.  He assumes my endocrinologist will not want the RAI.  I hope that's the case, because the whole point in my starting down this road was so that my reproductive endocrinologist will proceed with my fertility treatments.  

Would love to hear from anyone who had a cancer situation similar to mine.  The doctor was very encouraging, but of course hearing the words makes me somewhat anxious.

I see my endocrinologist on March 18th.


----------



## ceemys

Hi all!  I wonder why I haven't seen this thread!  I have had Hypothyroid problems for about 6 years now.  I used to be able to keep very slender and I used to have thick long hair.  Unfortunately, my hair sucks!!  It is stringy, breaks off super easy and just falls out.  I struggle to keep the weight down.  My levels fluxuate so much.  I have been on a dosage as low as 50mcg to  112 and then alternating, now I am on 100mcg and will go back again in 3 more weeks.  

I am so glad to find others that are as frustrated like me.  I haven't found anything to help with my hair.


----------



## mrsklamc

I did love the new doc. She was a bit more frank with me- For example no one had told me this has a 20-30 percent recurrence rate or that sometimes lymph nodes are resistant to RAI. She moved my scan up to August rather than December. All in all, I was quite pleased.

Another thing she mentioned that no one else has- whatever the thing in your blood is that is a 'cancer marker'- can't remember the terminology- thyroglobulin maybe? It was 127. She said they like it to be 2. Is that really, really high compared to what you guys have seen?


----------



## angwill

ceemys said:


> Hi all!  I wonder why I haven't seen this thread!  I have had Hypothyroid problems for about 6 years now.  I used to be able to keep very slender and I used to have thick long hair.  Unfortunately, my hair sucks!!  It is stringy, breaks off super easy and just falls out.  I struggle to keep the weight down.  My levels fluxuate so much.  I have been on a dosage as low as 50mcg to  112 and then alternating, now I am on 100mcg and will go back again in 3 more weeks.
> 
> I am so glad to find others that are as frustrated like me.  I haven't found anything to help with my hair.



I have the same issues as you plus super dry skin.  It is even more frustrating that some people with hypothyroid have no problems with weight and/or hair thinning and dry.  My aunt has hypothyroidism with no weight problems and tells me it should not be an issue since it isn't for her.  

I have tried different things with my hair from Nioxin to store brand products for thinning hair.  Nioxin did nothing but the store brands helped give it body which makes it look fuller and like I have more hair.


----------



## Christine

mrsklamc said:


> I did love the new doc. She was a bit more frank with me- For example no one had told me this has a 20-30 percent recurrence rate or that sometimes lymph nodes are resistant to RAI. She moved my scan up to August rather than December. All in all, I was quite pleased.
> 
> Another thing she mentioned that no one else has- whatever the thing in your blood is that is a 'cancer marker'- can't remember the terminology- thyroglobulin maybe? It was 127. She said they like it to be 2. Is that really, really high compared to what you guys have seen?



Glad to hear your appointment went well.

Yes 127 is really high.  But you won't get a true reading until at least 6 months after your RAI treatment.  The treatment is still doing its job in your thyroid cells.

I've always had a very low thyroglobulin, even right after surgery many years ago. It has stayed undetectable.  Everything I've heard is that they like it to be "undetectable."  They will accept anything under 2 and do nothing.  Once it starts going above that, they know that they are dealing with residual disease.


----------



## mrsklamc

I may not understand exactly how this marker works, but I don't understand why they just don't screen every 20-something woman for it at least. She said I'd probably had this for 20 years!


----------



## Christine

angwill said:


> I have the same issues as you plus super dry skin.  It is even more frustrating that some people with hypothyroid have no problems with weight and/or hair thinning and dry.  My aunt has hypothyroidism with no weight problems and tells me it should not be an issue since it isn't for her.
> 
> I have tried different things with my hair from Nioxin to store brand products for thinning hair.  Nioxin did nothing but the store brands helped give it body which makes it look fuller and like I have more hair.



I don't have hypothyroidism but I have lost my thyroid due to cancer.  Throughout the years I have been on a roller coaster with my TSH and hormone levels.  None of it has ever caused me to put on an excessive amount of weight or anything else.  I have superdry skin but I've always had that even when I had a "good" thyroid gland.  My son also has that so I think it's just us.

I did have "hair" problems and fatigue problems and I blamed my thyroid or synthetic hormones for so long.  Turned out I had a very subtle case of iron deficiency.  I am also deficient in Vitamin D.  When I started working on the iron, my hair came back very thick.  I don't have or never had anemia, just low iron.  I am now working on the Vitamin D but it is a slow process.

My point of this post is that we can't blame the thyroid for everything. If your levels are stable, it's most like not the culprit. It is very easy to want to blame it because every magazine, newspaper, or post on the DIS will tell you it's your thyroid.  You need to investigate many things before you can decide on that.


----------



## mrsklamc

Christine said:


> I don't have hypothyroidism but I have lost my thyroid due to cancer.  Throughout the years I have been on a roller coaster with my TSH and hormone levels.  None of it has ever caused me to put on an excessive amount of weight or anything else.  I have superdry skin but I've always had that even when I had a "good" thyroid gland.  My son also has that so I think it's just us.
> 
> I did have "hair" problems and fatigue problems and I blamed my thyroid or synthetic hormones for so long.  Turned out I had a very subtle case of iron deficiency.  I am also deficient in Vitamin D.  When I started working on the iron, my hair came back very thick.  I don't have or never had anemia, just low iron.  I am now working on the Vitamin D but it is a slow process.
> 
> My point of this post is that we can't blame the thyroid for everything. If your levels are stable, it's most like not the culprit. It is very easy to want to blame it because every magazine, newspaper, or post on the DIS will tell you it's your thyroid.  You need to investigate many things before you can decide on that.



Very true. I have had a horrible time losing weight, and the new endo said "Of course you do. You are very petite and could function well on 1200 calories a day, which is very difficult to do in our society."


----------



## luvmarypoppins

mrsklamc said:


> I did love the new doc. She was a bit more frank with me- For example no one had told me this has a 20-30 percent recurrence rate or that sometimes lymph nodes are resistant to RAI. She moved my scan up to August rather than December. All in all, I was quite pleased.
> 
> Another thing she mentioned that no one else has- whatever the thing in your blood is that is a 'cancer marker'- can't remember the terminology- thyroglobulin maybe? It was 127. She said they like it to be 2. Is that really, really high compared to what you guys have seen?



I am glad you liked the endo. Wow, that number does seem high. I think mine was practically undetectable after the RAI. But my scan showed a remenant. I think mine will definetely come back since its so agressive. The columnar cells are 3 times larger than reg. ones. I actually saw a picture of my cancer, oh what fun!  Its just a matter of when. I already talked to the dr. about the surgical plan. Yeah, his np told me it could come resistant too. Mine will come back in the R side since all my L side lymph nodes were taken out already. 

Was your scan moved up at her request? So it doesnt have to be exactly 1 year? Mine will actually be 13 months when it gets done in May.

Its good you got all your questions answered.


----------



## Christine

mrsklamc said:


> I may not understand exactly how this marker works, but I don't understand why they just don't screen every 20-something woman for it at least. She said I'd probably had this for 20 years!



If you have thyroid cells, they produce a protein called thyroglobulin.  Thyroglobulin is the marker they are measuring.

If you have your thyroid gland removed and then, further, have RAI done to it, you should have no thyroid cells so, ergo, no thyroglobulin.  

The marker is totally unreliable in a normal person with a thyroid gland because they WILL produce thyroglobulin.  Normal thyroid cells, as well as thyroid cancer cells produce thyroglobulin.

It is a very good diagnostic tool in thyroid cancer patients who have had both a total thyroidectomy and RAI. It is not a reliable marker if you have only had a lumpectomy or partial thyroidectomy or if you have not had RAI.  Because, theoretically, if you don't do all these things, you WILL have thyroid cells left that produce thyroglobulin.

Does that help?


----------



## mrsklamc

Christine said:


> If you have thyroid cells, they produce a protein called thyroglobulin.  Thyroglobulin is the marker they are measuring.
> 
> If you have your thyroid gland removed and then, further, have RAI done to it, you should have no thyroid cells so, ergo, no thyroglobulin.
> 
> The marker is totally unreliable in a normal person with a thyroid gland because they WILL produce thyroglobulin.  Normal thyroid cells, as well as thyroid cancer cells produce thyroglobulin.
> 
> It is a very good diagnostic tool in thyroid cancer patients who have had both a total thyroidectomy and RAI. It is not a reliable marker if you have only had a lumpectomy or partial thyroidectomy or if you have not had RAI.  Because, theoretically, if you don't do all these things, you WILL have thyroid cells left that produce thyroglobulin.
> 
> Does that help?



Yes, thank you! That makes so much more sense.


----------



## es45

Hi, all,

I just found this thread after spending so much time at the DCL and DVC threads, as well as others while planning vacations for the last couple of years. Amazing that I haven't seen it until today! I had thyroid cancer 20 years ago, with a recurrence 10 years ago. I had a biopsy this October for a growth detected during my regular neck ultrasounds: it was inconclusive so I'm just waiting for my next scan in April. 

How great to find yet another helpful thread on the DIS


----------



## Christine

es45 said:


> Hi, all,
> 
> I just found this thread after spending so much time at the DCL and DVC threads, as well as others while planning vacations for the last couple of years. Amazing that I haven't seen it until today! I had thyroid cancer 20 years ago, with a recurrence 10 years ago. I had a biopsy this October for a growth detected during my regular neck ultrasounds: it was inconclusive so I'm just waiting for my next scan in April.
> 
> How great to find yet another helpful thread on the DIS




es45--Welcome!

Out of curiosity, can you tell me what your initial treatment was 20 years ago.  I am always curious about the events surrounding a recurrence so far after initial diagnosis.


----------



## es45

Christine said:


> es45--Welcome!
> 
> Out of curiosity, can you tell me what your initial treatment was 20 years ago.  I am always curious about the events surrounding a recurrence so far after initial diagnosis.



I was diagnosed with papillary cancer and had a near-total thyroidectomy. At that time I was told that I would just take "1 little pill every day and not have to worry about this again." I don't think a good job with thyroid suppression was done on my part or my doctors so I think that is why it recurred 10 years later.


----------



## Christine

es45 said:


> I was diagnosed with papillary cancer and had a near-total thyroidectomy. At that time I was told that I would just take "1 little pill every day and not have to worry about this again." I don't think a good job with thyroid suppression was done on my part or my doctors so I think that is why it recurred 10 years later.




Thanks, I always like to know.

I was told that a near-total left a larger chance for recurrence, especially with multiple tumors (always some thyroid cancer in the remaining tissue).  It sounds like you did not have RAI either?


----------



## es45

Christine said:


> Thanks, I always like to know.
> 
> I was told that a near-total left a larger chance for recurrence, especially with multiple tumors (always some thyroid cancer in the remaining tissue).  It sounds like you did not have RAI either?



No, not until 10 years later for the recurrence. Incidentally, I had 3 tumors before the surgery, so that fits what you were told too.


----------



## MariDisney

es45 said:


> I was diagnosed with papillary cancer and had a near-total thyroidectomy. At that time I was told that I would just take "1 little pill every day and not have to worry about this again." I don't think a good job with thyroid suppression was done on my part or my doctors so I think that is why it recurred 10 years later.



That's basically what the surgeon said to me yesterday (see post above).  Can you talk a little about what you mean about not doing a good job of supression?  You have me much more freaked out than I was yesterday!!


----------



## es45

MariDisney said:


> That's basically what the surgeon said to me yesterday (see post above).  Can you talk a little about what you mean about not doing a good job of supression?  You have me much more freaked out than I was yesterday!!



Sorry, don't mean to freak you out. I was not made aware of how difficult it can be to maintain the right TSH level, especially if you aren't checking it regularly. I was going in once a year for a check-up, not every 3 months. I was taking my Synthroid at all times of the day, missing it some days and doubling up the next. I know how crazy it sounds now and I have no excuse other than being a 19-year-old college student with too much to remember. Of course I was never told to go to an endocrinologist either and my internist said that once a year testing was fine. Now that I'm forty, I know better.


----------



## Christine

es45 said:


> Sorry, don't mean to freak you out. I was not made aware of how difficult it can be to maintain the right TSH level, especially if you aren't checking it regularly. I was going in once a year for a check-up, not every 3 months. I was taking my Synthroid at all times of the day, missing it some days and doubling up the next. I know how crazy it sounds now and I have no excuse other than being a 19-year-old college student with too much to remember. Of course I was never told to go to an endocrinologist either and my internist said that once a year testing was fine. Now that I'm forty, I know better.



es45--

Thyroid cancer treatment has come a LONG way in 20 years.  I was diagnosed 14 years ago and it was changing then.

I remember when I was diagnosed (1995), my doctor told me that they used to treat thyroid cancer with just a lumpectomy.  Then they found that it was recurring too often, so then they would just do a near-total (like you had) leaving one piece behind to "help" the patient feel better.  By the time I got to my situation, the medical community was discovering that this was problematic.  Too many people were popping up with recurrences.  That started the protocol of TOTAL thyroidectomy followed by RAI in ALL cases.  So, that was just starting in 1995.  As I participated in my support group, it was easy to see that lots of doctors weren't getting the word and many people were not following up with RAI.  

To be honest, I don't think your lack of suppression was the real culprit.  You obviously had multi-focal papillary (so did I) which has a high rate of recurrence without total removal and subsequent RAI.  TSH suppression is just small part of that.  I doubt the suppression would have stop those tumors from getting bigger.  My guess is they were there in that leftover piece of thyroid tissue you had.

I am now considered a low-risk case.  TSH suppression is problematic for me.  My doctor and I agree that I can keep my TSH at 0.3.  I wouldn't do that if I was early in treatment but I feel okay doing it now.


----------



## es45

Christine said:


> To be honest, I don't think your lack of suppression was the real culprit.  You obviously had multi-focal papillary (so did I) which has a high rate of recurrence without total removal and subsequent RAI.  TSH suppression is just small part of that.  I doubt the suppression would have stop those tumors from getting bigger.  My guess is they were there in that leftover piece of thyroid tissue you had.



You don't know how much better I feel reading that. I still get irritated that I didn't pay more attention then and I have often wondered if my mistakes put me to where I am now.


----------



## MariDisney

Christine said:


> es45--
> 
> Thyroid cancer treatment has come a LONG way in 20 years.  I was diagnosed 14 years ago and it was changing then.
> 
> I remember when I was diagnosed (1995), my doctor told me that they used to treat thyroid cancer with just a lumpectomy.  Then they found that it was recurring too often, so then they would just do a near-total (like you had) leaving one piece behind to "help" the patient feel better.  By the time I got to my situation, the medical community was discovering that this was problematic.  Too many people were popping up with recurrences.  That started the protocol of TOTAL thyroidectomy followed by RAI in ALL cases.  So, that was just starting in 1995.  As I participated in my support group, it was easy to see that lots of doctors weren't getting the word and many people were not following up with RAI.
> 
> To be honest, I don't think your lack of suppression was the real culprit.  You obviously had multi-focal papillary (so did I) which has a high rate of recurrence without total removal and subsequent RAI.  TSH suppression is just small part of that.  I doubt the suppression would have stop those tumors from getting bigger.  My guess is they were there in that leftover piece of thyroid tissue you had.
> 
> I am now considered a low-risk case.  TSH suppression is problematic for me.  My doctor and I agree that I can keep my TSH at 0.3.  I wouldn't do that if I was early in treatment but I feel okay doing it now.



I hope no one is bothered if I continue to ask some questions.

Do you think the size of the tumor matters?  My impression from my surgeon yesterday was that since the tumor was verysmall (3.5mm) and it wasn't near the margin of the thyroid that RAI would most likely be unnecessary.  He said RAI is looked at for a tumor around 10 mm or larger. Since the whole point of getting rid of my thyroid was so I could get back to fertility treatments (and I am nearly 41), having RAI would set me back in that regard to a point I do not want to be.  In other words, RAI would delay fertility treatments for at least a year, and that is just not in my plan!  What are your (everyone's!) thoughts.


----------



## luvmarypoppins

Mari - that is a good question. I honestly dont know. I know Micayla is dealing about some of your conception issues too, maybe she can comment on what her endo said.   My tumor was not mm but 12.5 centimeters!! I think that was the primary then they think mine went off and made another tumor and lodged itself in a lymph node. I am wishing you all the best.


----------



## mrsklamc

Mari- 

With absolutely no medical education and solely based on my own logic and what my doctors have told me, here's what I think.

Thyroid tumors are normally very slow growing. Doctor yesterday said I'd probably had this for 20 years. AND if they said you don't need RAI I assume they know what they are talking about. Endo yesterday told me that pregnancy hormones FLOOD your body and they impact thyroid/cancer cells the same way. SO- I'd say pursue your pregnancy, and after the baby is born they will probably scan you again...plenty of time for RAI if needed at that point, would be my take on it, based on my very limited knowledge.


----------



## Christine

es45 said:


> You don't know how much better I feel reading that. I still get irritated that I didn't pay more attention then and I have often wondered if my mistakes put me to where I am now.



Well, I'm no expert but I have spent the last 10 years heavily involved in mine and other people's thyroid cancer and your situation is very common for someone diagnosed at that time.  Had you not had multifocal papillary, you probably would have been fine with your near total.  Since you did have it, you most assuredly had remaining thyroid cancer in that little piece they left.

It is pretty well known that Synthroid, even in high doses, does not cure or stop thyroid cancer.  It merely can slow its growth.  I'd say that is pretty true considering you didn't have trouble for 10 more years.  It really is hard not to second guess things.

I'm still mad at myself that, at the beginning of my treatment, I didn't take a deep breath and do more research (internet support groups were not available to me then).  I didn't go with the best doctor/facility that I could have and I feel that some mistakes were made in my initial treatment that caused me problems later.  I will always blame myself for not taking the time to check things out.  I blame a lot of other people around for not speaking up too.  My ex-MIL, for instance.  She worked in the endocrine pathology lab at NIH at the time of my diagnosis.  She insisted that my pathology slides be sent to her boss, who is a world reknowned endocrinology pathologist, for a second look.  They confirmed the pathology.  Well, I find out later that my MIL was not happy with the surgeon and endo I picked, she KNEW who the best ones were, but decided to keep that info from me so she wouldn't "hurt my feelings."  What's up with THAT?  She certainly didn't mind getting my pathology slides.


----------



## Christine

> Do you think the size of the tumor matters?



Yes, it matters.

*My impression from my surgeon yesterday was that since the tumor was verysmall (3.5mm) and it wasn't near the margin of the thyroid that RAI would most likely be unnecessary. * 

Your tumor size and location is the best of all possible circumstances.  As long as it wasn't considered "multi-focal" your doctor is mostly correct.



> He said RAI is looked at for a tumor around 10 mm or larger.



As far as I know, current medical practice is that for tumors 10mm or smaller, RAI is given on a case-by-case basis.  There are some doctors that would ablate you for this.  On one of the listserv support groups I follow, the doctor who moderates has noted cases where there has been spread to lymph glands with "micropapillary" tumors.  It does go against "textbook" to see this because one would figure that if you don't see it near the margin, it didn't go past the margin.  The doctor never really explain HOW this happens.  Maybe he doesn't really know.  It could be through the bloodstream or the lymphatic system.  The point is--it does happen.  I'm not trying to scare you or tell you that your doctor is wrong.  I think most doctors will follow what your doctor is doing.  But I have noticed that the doctors that are on the cutting edge of thyroid oncology (and there are only a handful in the US) seem to lean toward RAI in all cases.

I





> n other words, RAI would delay fertility treatments for at least a year, and that is just not in my plan!  What are your (everyone's!) thoughts.



My thoughts--in your case I would probably feel very comfortable in NOT getting the RAI.  I think the odds are with you that you will be fine.  As another poster pointed out, it is very slow growing in most papillary cases and you will be scanned again.  Not having RAI does make it wee bit harder to follow you up with bloodwork (tumor marker tests) and scans because you are not fully ablated.  Even with a total thyroidectomy, you will still have residual tissue that will take up iodine on a scan (and light up) and you may produce thyroglobulin because you still have cells.  You will most likely benefit from regular palpations of the neck and ultrasounds of the neck.


----------



## MariDisney

Christine said:


> Yes, it matters.
> 
> *My impression from my surgeon yesterday was that since the tumor was verysmall (3.5mm) and it wasn't near the margin of the thyroid that RAI would most likely be unnecessary. *
> 
> Your tumor size and location is the best of all possible circumstances.  As long as it wasn't considered "multi-focal" your doctor is mostly correct.
> 
> 
> 
> As far as I know, current medical practice is that for tumors 10mm or smaller, RAI is given on a case-by-case basis.  There are some doctors that would ablate you for this.  On one of the listserv support groups I follow, the doctor who moderates has noted cases where there has been spread to lymph glands with "micropapillary" tumors.  It does go against "textbook" to see this because one would figure that if you don't see it near the margin, it didn't go past the margin.  The doctor never really explain HOW this happens.  Maybe he doesn't really know.  It could be through the bloodstream or the lymphatic system.  The point is--it does happen.  I'm not trying to scare you or tell you that your doctor is wrong.  I think most doctors will follow what your doctor is doing.  But I have noticed that the doctors that are on the cutting edge of thyroid oncology (and there are only a handful in the US) seem to lean toward RAI in all cases.
> 
> I
> 
> My thoughts--in your case I would probably feel very comfortable in NOT getting the RAI.  I think the odds are with you that you will be fine.  As another poster pointed out, it is very slow growing in most papillary cases and you will be scanned again.  Not having RAI does make it wee bit harder to follow you up with bloodwork (tumor marker tests) and scans because you are not fully ablated.  Even with a total thyroidectomy, you will still have residual tissue that will take up iodine on a scan (and light up) and you may produce thyroglobulin because you still have cells.  You will most likely benefit from regular palpations of the neck and ultrasounds of the neck.



Thank you very much for your comments.  I'm not sure it isn't multi focal because of what I'm about to post here now that my pathology report is right in front of me.  There are 4 points under "Diagnosis".

"Bilateral near total thyroid resection"
1. papillary carcinoma, lower lobe maximum dimensions 3.5 mm closest margin 1.2 mm
2. residual thyroid with focal adenomatous changes, chronic inflammatory foci, consisten with treated hyperthyroidism.
3. scattered microscopic foci suggestive of incipient papillary carcinoma, not at margins.
4. Hurthle cell adenoma, maximum dimensions 4.8 mm, excised

Since I am new to this whole thyroid cancer idea (about 36 hours now) I'm still reeling and trying to just figure out what all these words mean.  Of course, I will be asking many many questions of my endo when I see him on the 18th.  I know at some point I'll be scolded for getting my medical information from an internet message board.  But, it does give me great comfort "talking" to some people who have been this before.  Naturally, every single thing I ask about here will be asked of the doctor as soon as I can. 

In terms of the near total, the surgeon did say it was as darn close to total as he could do.  He said he almost never "says" he did a total because you can never be sure if you've gotten every thyroid cell.  It made sense to me!  (and he's the head of oncological surgery at a respected hospital, so I feel like I was in good hands)

Thank you all for any more insight you might provide.  I am learning so much from you all.  

To the PP who mentioned being sloppy, so to speak, about taking the synthroid early on.  I will say that I learned here how important it is to take it carefully.  I am getting the brand name stuff and taking it on an empty stomach at the same time each day and then not eating for about another hour.


----------



## Christine

MariDisney said:


> T
> 3. scattered microscopic foci suggestive of incipient papillary carcinoma, not at margins.




This statement above indicates that you could have multifocal papillary.  They don't come right out and say it--they say suggestive.  Which it looks like it means that they see some cells consistent with early formation papillary cancer.  This is what I had and so did es45.  I had one tumor that was just under 1 cm and then, according to my pathologist, I had small cells "like pepper" in the gland that were not tumors but were papillary cancer cells.  

Just know that if there is any piece, remnant, cell, of thyroid tissue left in your neck, those cells are still able to grow.

I hate saying things like this because I know they scare people and sound awful but when it comes to this stuff, I don't want to sugar coat it.  I've seen too many doctors/surgeons who don't really *know* what thyroid cancer can do down the road.  There are a few in the country that do know and they are pretty aggressive.


----------



## mrsklamc

Just out of curiousity, does anyone know offhand what they state as the cost of RAI? (i.e. my surgery pre-insurance was listed at 30 or 40 thousand dollars.)

I'm wondering what the cost of a scan is because I am thinking of going with a high deductible health plan. I know it sounds crazy but I think I will be spending quite a bit out of pocket anyway and there IS an out of pocket maximum that we do have the ability to cover.


----------



## jennz

Wow - I knew it was a lot but didn't know that much!!


----------



## luvmarypoppins

jennz said:


> Wow - I knew it was a lot but didn't know that much!!



Wowsa!! I didnt know it was that much either!! I cant imagine what my hospital bill must have been last year, 7 surgeries, coma, icu, 4 cat scans, 7 units of blood, emergency room etc. oh and of course add in the RAI. and the overnight stay etc. My ins. co does not send me those kind of statements. They only do office visits with co pays and then I did get about 2 biopsies which I challenged for being out of network etc 

OT - Jenn - I am just wondering if you are friends with the poster Scarlett (Brandy) who was trying to adopt a little girl from China? I know she lives in IN too. I was wondering how things were going with her.


----------



## es45

I know a lot of you with thyroid problems experience extreme fatigue. How about irregular sleep patterns? Are there strategies for dealing with it?

I can't stay awake past 8 some nights but I'm up again at midnight until 4 in the morning. It certainly makes for a long day. It is better than it was before (when I was asleep at 5) but it is not fun when you are fixing dinner, helping with homework, or just trying to spend time with family.


----------



## Christine

es45 said:


> I know a lot of you with thyroid problems experience extreme fatigue. How about irregular sleep patterns? Are there strategies for dealing with it?
> 
> I can't stay awake past 8 some nights but I'm up again at midnight until 4 in the morning. It certainly makes for a long day. It is better than it was before (when I was asleep at 5) but it is not fun when you are fixing dinner, helping with homework, or just trying to spend time with family.




es45--

I have had bouts of that.  I remember one time in particular.  It was so bad, i went to my GP and we tried things like Sonata and Ambien (which apparently don't work for me).  I just suffered through and it finally just stopped.  Never knew why it started or why it stopped.  I was miserable though.


----------



## mrsklamc

Funny you should ask. After having almost no trouble at all, this week has been miserable emotionally and I think exhuastion is to blame as I cannot seem to sleep.


----------



## es45

mrsklamc said:


> Funny you should ask. After having almost no trouble at all, this week has been miserable emotionally and I think exhuastion is to blame as I cannot seem to sleep.



Like Christine, the sleep meds don't work for me; often, they make the situation worse.

Keeping my fingers crossed that a good sleep will come for both of us tonight.


----------



## mrsklamc

I was VERY anxious before my surgery and got some ambien. I took one the night before last and it did help, but I didn't take it last night.


----------



## kathleena

mrsklamc said:


> Just out of curiousity, does anyone know offhand what they state as the cost of RAI? (i.e. my surgery pre-insurance was listed at 30 or 40 thousand dollars.)
> 
> I'm wondering what the cost of a scan is because I am thinking of going with a high deductible health plan. I know it sounds crazy but I think I will be spending quite a bit out of pocket anyway and there IS an out of pocket maximum that we do have the ability to cover.



That sounds crazy.  My DH had pituitary surgery by one of the top surgeons in the world and the hospital bills were around $20,000 and the doc himself was $6,000.  I would just doubt something as relatively common as RAI would be more than brain surgery.  Or are you saying that thyroid surgery is that expensive?  Still sounds like a lot to me!


----------



## kathleena

To everyone posting about sleep etc I had always thought my awful sleep patterns were a result of menopause and thyroid issues but have recently found out that they are a result of low levels of serotonin.

Apparently, since somewhere around my late 40s I have probably had dropping levels of serotonin and then in times of stress it drops them even more (because they get used up faster) and I end up with more anxiety, less sleep and a host of other issues that I also thought were menopause related.

So now on meds for serotonin (translated - something like Prozac) a very low dose, and within two nights I"m sleeping 8-9 hours almost straight through, just one wake-up last night and I got right back to sleep.

This has happened off and on for 10 years and I tried several different sleep meds like Ambien with no relief.  Hoping this will do more for me.

Anyway - just trying to say - it may not be the thyroid doing it!


----------



## angwill

kathleena said:


> That sounds crazy.  My DH had pituitary surgery by one of the top surgeons in the world and the hospital bills were around $20,000 and the doc himself was $6,000.  I would just doubt something as relatively common as RAI would be more than brain surgery.  Or are you saying that thyroid surgery is that expensive?  Still sounds like a lot to me!



Is this after your insurance paid?  I worked in a hospital and brain surgery for $26,000 is unheard of where I live.  I would say it would be more like $260,000 around here if not more.


----------



## ceemys

I just had my level checked again...after 6 weeks of being on 100mcg, my level is still super low at 18!  SO frustrating.


----------



## MariDisney

kathleena said:


> That sounds crazy.  My DH had pituitary surgery by one of the top surgeons in the world and the hospital bills were around $20,000 and the doc himself was $6,000.  I would just doubt something as relatively common as RAI would be more than brain surgery.  Or are you saying that thyroid surgery is that expensive?  Still sounds like a lot to me!



I thought I'd post the price of my recent surgery in light of this line of discussion.  I had a total thyroidectomy in February with a 1 night hospital stay in the Philadelphia suburbs.  The hospital cost was $9500 and the surgeon's cost was $2450.  Since I have insurance (Aetna) they paid their "agreed upon rate" which was $7300 and $900. I haven't seen anything from the anesthesiologist yet, but I'm pretty sure that will be an additional billing.


----------



## luvmarypoppins

Well this week I went for a sonogram. All I can say is with a left neck dissection a sonorgram on that side really hurts!!

Sat. I went for the blood test and I think in 2 weeks I have an endo visit. So I am praying she will say the levels are not measurable for the thyroglobulin.

I see the rad. onc. in april. I guess we will discuss the lid and scan for may. Oh what Fun!!

I nvever see those bills. I did get one by mistake for surgery #3 from ent surgeon #2 who saved my life when the jugular vein burst. I think he got like around $1200 for 3 hours of work. But then saving my life...that was priceless. I have so much to thank God for. 

Just wondering, how often do you get a sonogram. I think she said the blood tests will always be every 3 months?


----------



## Christine

luvmarypoppins said:


> Just wondering, how often do you get a sonogram. I think she said the blood tests will always be every 3 months?



Yearly sonogram.

Thyroglobulin two times per year.

TSH two times per year.

TSH used to be 4 times per year but I've been SOO stable for many years now that we only do it twice a year.


----------



## mrsklamc

In addition to the thyroidectomy I had a radical neck dissection; the surgery itself took about 5 hours. We didn't pay $40k, just our deductble of 3k.


----------



## kathleena

angwill said:


> Is this after your insurance paid?  I worked in a hospital and brain surgery for $26,000 is unheard of where I live.  I would say it would be more like $260,000 around here if not more.



It was the billed rate from the hospital and the doctor, before the insurance adjusted for their negotiated rate.  I think their rate to the doc ended up being around $1700, but I can't remember the hospital total.  We paid far less than that as we had an annual max of $6000 for the family.  Oh and I had a typo, the hospital billed for $28,000.

When we had the consultation with the doc, his assistant had given us an estimate of $50,000.  The surgery was at Mass General in Boston.  Like I said - pituitary surgery - he is a neurosurgeon and all he does is pituitary.  There was only one night in the hospital.


----------



## nmmom95

Hi! I'm new here.  I am having a partial thyroidectomy in a couple of weeks.  I If it is found to be cancer, they are going back in to remove the other half.  I have other health issues (kidney failure and an autoimmune), so the doctor thought this would be less traumatic for me.  I'm really scared.

Thanks to mrsklamac for telling me about this board.


----------



## luvmarypoppins

O.K. This might be a dumb question, but heah I plead thy ca newbie status, I am still learning I guess.

If I just had the sonogram (2nd one, since I had one in Aug. I think)

Would the sonogram give an accurate picture if the remnant is still there or since its been a year since the RAI next month would the sonogram show if the remnant was gone

and which is the better indicator, I am assuming the thyroglobulin with hopefully unmeasurable readings.

I havent heard from my endo, but I know she said last time, oh I didnt call you because I see you were  coming in etc. I guess I should ask her how she disseminates information whether good or bad etc. I dont iknow whats worse, hearing bad news in person or over the phone if  I ever had to deal with that again. I did both.


----------



## mrsklamc

nmmom95 said:


> Hi! I'm new here.  I am having a partial thyroidectomy in a couple of weeks.  I If it is found to be cancer, they are going back in to remove the other half.  I have other health issues (kidney failure and an autoimmune), so the doctor thought this would be less traumatic for me.  I'm really scared.
> 
> Thanks to mrsklamac for telling me about this board.



It sounds like your case is very unique because of your other health issues. They did a biopsy and felt it was inconclusive?

I don't know about your other health issues, but if they didn't exist, I'd say go ahead and have the total thyroidectomy done. It's really not too bad. The right half of my thyroid looked 'perfect' and my doctor said it used to be that they would have left it in, but that they found that if one half of the thyroid was cancerous the other side usually got around to being that way, too. I'm not a doctor at all, but I guess I'm just saying...unless you are 100% comfortable with that course of treatment, I would suggest getting a second opinion. I know nothing about your other health conditions but I know if I had it to do over again I would fight my first endocrinologist tooth and nail, instead of giving in like I did to treatment that wasn't really what I wanted to do.


----------



## jennz

nmmom95 said:


> Hi! I'm new here.  I am having a partial thyroidectomy in a couple of weeks.  I If it is found to be cancer, they are going back in to remove the other half.  I have other health issues (kidney failure and an autoimmune), so the doctor thought this would be less traumatic for me.  I'm really scared.
> 
> Thanks to mrsklamac for telling me about this board.



I'm guessing they're doing this to leave part of the thyroid in if at all possible.  Having part of your thyroid is better than having none.

 I had the same situation, inconclusive biopsy - they did a frozen cell during my surgery and would have removed the whole thing if it came back positive.  The frozen cell biopsy gives them quick results while they are doing surgery.  Are they not doing the frozen cell biopsy during your surgery?  I thought that was protocol.  Unfortunately it does not show the cancer 100% if the time, and so when they sent mine out they found that it was indeed cancer and I had to have a second surgery.




luvmarypoppins said:


> O.K. This might be a dumb question, but heah I plead thy ca newbie status, I am still learning I guess.
> 
> If I just had the sonogram (2nd one, since I had one in Aug. I think)
> 
> Would the sonogram give an accurate picture if the remnant is still there or since its been a year since the RAI next month would the sonogram show if the remnant was gone
> 
> and which is the better indicator, I am assuming the thyroglobulin with hopefully unmeasurable readings.
> 
> I havent heard from my endo, but I know she said last time, oh I didnt call you because I see you were  coming in etc. I guess I should ask her how she disseminates information whether good or bad etc. I dont iknow whats worse, hearing bad news in person or over the phone if  I ever had to deal with that again. I did both.




I don't know about the sonogram, I've never had one although see quite a few people mention them on this thread.  I always have an uptake, where you take the radioactive iodine.

My endo always gets excited about the thyroglobulin so I'm guessing that the better indicator, but am not sure either.  I'm not much help!

I would definitely ask to get a call with your results.  So what if you're coming in soon?  Waiting for results is hard!  I'd rather know than keep waiting. Just my opinion.


----------



## nmmom95

mrsklamc said:


> It sounds like your case is very unique because of your other health issues. They did a biopsy and felt it was inconclusive?
> 
> I don't know about your other health issues, but if they didn't exist, I'd say go ahead and have the total thyroidectomy done.



They said the biopsy was suspicious and that it is cancer about 20% of the time.  I would prefer it be taken all at once, but the surgeon wants to go this route because of my health issues.



jennz said:


> I'm guessing they're doing this to leave part of the thyroid in if at all possible.  Having part of your thyroid is better than having none.
> 
> I had the same situation, inconclusive biopsy - they did a frozen cell during my surgery and would have removed the whole thing if it came back positive.  The frozen cell biopsy gives them quick results while they are doing surgery.  Are they not doing the frozen cell biopsy during your surgery?  I thought that was protocol.  Unfortunately it does not show the cancer 100% if the time, and so when they sent mine out they found that it was indeed cancer and I had to have a second surgery.



The surgeon said that they usually do the frozen cell biopsy during surgery and remove the entire thyroid, if necessary. I am going to be a little different, since I am on dialysis.  I really don't want to do this twice, though.


----------



## luvmarypoppins

nmmom95 said:


> Hi! I'm new here.  I am having a partial thyroidectomy in a couple of weeks.  I If it is found to be cancer, they are going back in to remove the other half.  I have other health issues (kidney failure and an autoimmune), so the doctor thought this would be less traumatic for me.  I'm really scared.
> 
> Thanks to mrsklamac for telling me about this board.



Just wanted to say welcome and wishing you all the best with your upcoming surgery.


----------



## nmmom95

luvmarypoppins said:


> Just wanted to say welcome and wishing you all the best with your upcoming surgery.



Thanks!  I hope you get good results!


----------



## luvmarypoppins

Well today was my endo visit. Praise God I got such a good report.

She said, the sonogram was just great and the remnant was gone, so the RAI killed it all.

The thyroglobulin is undetectable and the TSH is about 0.1.

She is keeping me on the high level of synthroid for at least another year so she said "thats where we like to have it with all our thy ca pts". So its a little hyper me and maybe some heeart palpatations.I havent really noticed those that much.

She said she is sending the rad onc. an e mail and feels I dont need a 1 year scan. Hmm, I thought that was like mandatory or required? I didnt want to get into that with her as I think the rad. onc. has the final say, but here you have a cancer team in the whole hosp. system, the surgeon, rad. onc. and endo together etc. So she also mentioned about just getting the 2 thyrogen shots and getting a blood test. I dont know if that is another option or will be done in addition to the probable scan etc.

She also said that if there was a recurrence it would likely occur in the first year post op? Hmm, has anyone heard of that comment before? Even my surgeon never said that to me etc.


----------



## mrsklamc

I wonder if that just has to do with it being a rare variant? I'm so glad you got a good report!


----------



## jennz

luvmarypoppins said:


> Well today was my endo visit. Praise God I got such a good report.
> 
> She said, the sonogram was just great and the remnant was gone, so the RAI killed it all.
> 
> The thyroglobulin is undetectable and the TSH is about 0.1.
> 
> She is keeping me on the high level of synthroid for at least another year so she said "thats where we like to have it with all our thy ca pts". So its a little hyper me and maybe some heeart palpatations.I havent really noticed those that much.
> 
> She said she is sending the rad onc. an e mail and feels I dont need a 1 year scan. Hmm, I thought that was like mandatory or required? I didnt want to get into that with her as I think the rad. onc. has the final say, but here you have a cancer team in the whole hosp. system, the surgeon, rad. onc. and endo together etc. So she also mentioned about just getting the 2 thyrogen shots and getting a blood test. I dont know if that is another option or will be done in addition to the probable scan etc.
> 
> She also said that if there was a recurrence it would likely occur in the first year post op? Hmm, has anyone heard of that comment before? Even my surgeon never said that to me etc.



Great news!   Thanks for the update!

I have never heard that about recurrence, I've always been told that it can come back any time. 

I thought you get the thyrogen shots and then the scan, and the thyrogen is so you don't have to go off your meds.  Maybe she means she'll do that and you don't have to go off of it?

Also, I know they like to keep cancer patients slightly hyper, and I've been there now for over 15 years.  Your comment about heart palpitations scared me a little (sorry ).  Just know that you should not be having those, if you do your meds need to come down a little.  My TSH is always below .1.  I do remember one time when my meds were being adjusted and I was hyper it felt like my heart was coming out of my chest...very scary!!

Okay I'm done with my overprotectiveness.


----------



## Christine

> She said, the sonogram was just great and the remnant was gone, so the RAI killed it all.
> 
> The thyroglobulin is undetectable and the TSH is about 0.1.



GREAT news!



> She is keeping me on the high level of synthroid for at least another year so she said "thats where we like to have it with all our thy ca pts". So its a little hyper me and maybe some heeart palpatations.I havent really noticed those that much.



That's pretty standard.  If you find you get heart palps you may need to go on a beta blocker.  They really really like thyca patients to be very suppressed and they often have to use a beta blocker to get that balance between suppression and not having your heart go nuts.



> She said she is sending the rad onc. an e mail and feels I dont need a 1 year scan. Hmm, I thought that was like mandatory or required? I didnt want to get into that with her as I think the rad. onc. has the final say, but here you have a cancer team in the whole hosp. system, the surgeon, rad. onc. and endo together etc. So she also mentioned about just getting the 2 thyrogen shots and getting a blood test.



From what I am hearing, after you are deemed "clean" the new way to monitor you is with Thyrogen shots and then having your blood drawn at a specific point after the shot to check for your Tg.  Tg is the most sensitive marker.  They are finding that the need to give your the extra radiation as well as scan you is not really necessary anymore.



> She also said that if there was a recurrence it would likely occur in the first year post op? Hmm, has anyone heard of that comment before? Even my surgeon never said that to me etc.



With a more aggressive form of thyroid cancer this would be true.  This is actually also true with the more latent forms.  Statiscally, your recurrence will *probably* show up sooner rather than later.  However, it can recur at any time.


----------



## mrsklamc

I have noticed that my heart races during the night if I 'splurge' and have a pepsi in the evening.


----------



## luvmarypoppins

Bless you for all your insight and information christine (and OT) I hope all your appliance problems are getting under control.

Hmm, so if I get the 2 shots, I am wodering if I would have to still do the diet? Oh how I do not enjoy that diet!! With passover coming up I was thinking of snagging a box of matzoh for the diet since its easier to find around this time and I am not a big fan of oatmeal, at least that kind, cookies ok etc.

And with your comments about the scan and not needing the extra radiation, it got me thinking, I posted before about my rad onc. doing some kind of research about radiation and the scan etc. I think she was trying to see if a 2 day rad. precaution after the tracer rad. was sufficient etc. Hmm, hopefully she may have drawn the same conclusions. I know she has written a chapter in a thy ca book before etc.  Well I ee her April 29, so I guess we will just see what she has to say.     I think before she said, oh I will give you a 1 year scan and then decide what to do with you etc. Hmm, maybe she will change her mind?

Also I know it can come back at anytime, its always in the back of my mind. I am still trying to adjust and deal with that mentally etc. Its a fine line etc. I just dont want to be so overconfident etc. I am glad I have alot of faith because that really helps me etc.


----------



## Christine

> Bless you for all your insight and information christine (and OT) I hope all your appliance problems are getting under control.



The appliances were delivered today.  The fridge was a tad too tall (the dimensions Sears gave were INCORRECT) so my husband had to do a little cutting on the upper cabinet.  It's always something.



> Hmm, so if I get the 2 shots, I am wodering if I would have to still do the diet? Oh how I do not enjoy that diet!!



No diet required if you are doing the "stimulated" TG testing which is what they are calling it.  The diet is only necessary if you are ingesting RAI.



> And with your comments about the scan and not needing the extra radiation, it got me thinking, I posted before about my rad onc. doing some kind of research about radiation and the scan etc. I think she was trying to see if a 2 day rad. precaution after the tracer rad. was sufficient etc. Hmm, hopefully she may have drawn the same conclusions. I know she has written a chapter in a thy ca book before etc.  Well I ee her April 29, so I guess we will just see what she has to say.     I think before she said, oh I will give you a 1 year scan and then decide what to do with you etc. Hmm, maybe she will change her mind?



Well, the thinking is changing on the followup scans.  Once they are comfortable with your uptake and pictures (or lack thereof) they are realizing that the thyroglobulin (Tg) is the more sensitive, indicative test.


----------



## mrsklamc

Just wondered..how long have you guys had to go on the LID for your follow up scans? I'm sure it varies by dr. but I'm just curious.


----------



## Christine

mrsklamc said:


> Just wondered..how long have you guys had to go on the LID for your follow up scans? I'm sure it varies by dr. but I'm just curious.



Most doctors will tell you to do it for 2 weeks.

The thyroid oncologist who is the LID's biggest supporter and really drove home that physicians should require this has said that if you are EXCELLENT and do the diet perfectly you only need to be on it for 7 days; however, he said that most patients make so many mistakes the first few days that he directs 2 weeks so that by the second week, you've got it down.


----------



## luvmarypoppins

O.K. I am not bragging, but I did the diet perfectly. My dh even told the hosp. dietician that I was obsessed. O.K. I must have called her like 7 times at least during the time before it started. I was actually suppose to meet her in person before the diet started but it didnt work out.

My rad. onc. uses nih, thyca and her own combined. I cant even drink city water, only distilled. 

I of course would like to just have the 2 shots and just the blood test and no LID and scan. I have my appt. with the rad. onc. on april 29 so we will see what she says. 

Micayla I knew I couldnt believe how long they made you go on the LID before the RAI and after too.

Also when I stayed overnight in the hosp. after the rai they brought me salad but it had roast beef from the deli on it (boards head). I didnt even think that was allowed. I want to ask the dietician about that this time. Maybe since it was my last day etc?


----------



## mrsklamc

It was a long 3 weeks. I was just thinking I would be proactive about planning my menu so I can think about it the next few months. What made it hard was the weekend I had planned to make all my meal plans was when the feeling of really being hypo hit me all at once. My DH was amazing, but it was still harder than it probably had to be. 

I am a chocolate lover so the no-bake cookies with cocoa powder and unsalted PB were a lifesaver!


----------



## luvmarypoppins

I dont even think I could have cocoa powder, I know they said no chocolate type stuff, nothing etc. because we dont know how its processed.

Well Dh and I are going to disney May 18, and I see her the 29th of April , so I figure I better get on the diet and get out of here etc. I know I will just be so sick from those shots again.  

I know what I am doing as far as diet. I dont have a food processor etc. My plan is to just basically have an orange or banana and tea for breakfast. Maybe some matzoh and jelly. I hate oatmeal but could break down a day or two and try it I guess.

Lunch is most likely salad and chicken. I cooked a big bunch of basmati rice and no yolk noodles, that is allowed but not much they said. I just made a pot roast and dvided it up for 4 meals, it was lb of beef etc. The chicken I made stuff like with grilled pineapple and then with orange marmalade on it. as chinese is big around here. I think this time I am going try to do something with tomatoes. It wont be spaghetti sauce but something we will see etc. and I have done the matzoh and peanut butter sandhich. My ds laughed because it was dripping all over the place. I also used birdseye steamfresh veg, which were allowed, not the sauced ones. and edys sorbet, rasberry was o.k. I read the label for food dye etc.  I also bought the little packs of raisins and craisins just to think I actually had a snack and I was having something special. Gotta love cancer!! I think I did a pork chop with maple syrup, pecans and sweet potatoe. That was probably easter and I cooked them a ham etc.

I usually dont cook for the family during those 2 weeks much unless its something that resembles mine. Its too torturous psychologically for me to smell it and see it etc. and know I cant have it. I stay in the living room if they are eating in the kitchen etc.


----------



## mrsklamc

The endo I no longer see literally told me nothing besides 'go to the thyca website and use the cookbook there;' It includes cocoa powder so I went ahead and used it.It did NOT include the steamfresh veggies but maybe I will use those next time.


----------



## Christine

mrsklamc said:


> The endo I no longer see literally told me nothing besides 'go to the thyca website and use the cookbook there;' It includes cocoa powder so I went ahead and used it.It did NOT include the steamfresh veggies but maybe I will use those next time.



I'm not sure why cocoa would be a problem.  I know that chocolate, for the most part is, because much of it is made with dairy, milkfat solids, and various other add-ins.  I know that some dark chocolate used to be okay if it was really pure.  Cocoa is fine as far as I was ever told.


----------



## luvmarypoppins

Anyone have any info or insight about this. Another poster said that they are saying there is a link between thyroid cancer and uterine cancer, just wondering? I dont enjoy going to any doctors and that is one I have been putting off for a really long time. My endo told me to go for a check up etc. 

I also heard another poster say there is a link between thyroid and breast cancer. I didnt have breast cancer, but I have had a huge non cancerous tumor removed from my breast when I was in my 20s.

Anyone??


----------



## mrsklamc

My doctor said a slightly increased risk of other types of cancer is associated with the radiation treatment, but that there's no way to know if following cancers are caused by the radiation treatment, or if there was earlier radiation exposure that caused the thyroid cancer AND following cancers. 

Basically, just take the best care of yourself that you can and deal with things as they come up!


----------



## Christine

mrsklamc said:


> My doctor said a slightly increased risk of other types of cancer is associated with the radiation treatment, but that there's no way to know if following cancers are caused by the radiation treatment, or if there was earlier radiation exposure that caused the thyroid cancer AND following cancers.
> 
> Basically, just take the best care of yourself that you can and deal with things as they come up!



Yep, basically that is what I heard.  My doctor told me that there was no link between having thyroid cancer and an increased risk of any other type; however, the RAI might increase your risk for other cancers.


----------



## mrsklamc

Good evening ladies. I have something I just HAD to share...

I was flipping through some recipe books by Todd Wilbur ( http://www.topsecretrecipes.com/ ) and it has recipes for things like french's mustard, KC masterpiece BBQ, etc.  Now French's mustard I often get for a few cents after sales and coupons so my first thought was "Why would someone bother" and I immediately thought "UNLESS THEY WERE ON THE LID!" 

Now the KC masterpiece has molasses in it and I wasn't personally confident enough about the molasses distinctions they made to use any, but if you were it might add some nice variety to your LID.


----------



## cinmell

Has anyone here had eyelid surgery due to the eyelid not closing all the way from Grave's?  I'm at the point where they will do the surgery but I'm pretty hesitant.  My eye bulges out thanks to the graves and it just looks so much bigger than the other eye and there is irritation on the eye.

The ocular plastic surgeon said she would not do the pinching of the eyelid together b/c the lid is too wide open so it wouldn't look right. She explained they would make an incision on the lid (you wouldn't notice the scar b/c it would be on the eyelid creases) and that helps drop the lid and/or eye muscle down.  

I'm really curious to hear if anyone has had this procedure done and if you were happy with it.  I've never had any eye procedures and I'm really nervous!


----------



## luvmarypoppins

Christine, wanted to say I hope your ankle is feeling better. I didnt read the whole thread, just quickly glanced at it. Hope you get the treatment that you need to help you. 

Well a week from tomm. I am seeing the rad. onc. I must say that I think she is probably going to do the diet and the scan, so I am hoping for the best (just the thyrogen shots and blood test), but preparing for the worst, (diet,shots and scan). I am so pigging out right now on chocolate, pasta etc. I think its an emotional thing etc. I need to overload now so I can put up with the withdrawl later.

  Also I am telling her I am leaving for Disney on May 18, so we have a limited time frame here etc. I need to start the diet on April 30 and then get the scan on the 15th, so I can be radioactive for the 2 days before I get on the airplane.  If that doesnt work into her plans, then I will tell her just wait till I get back etc. 

I dot even know if she will read the e mail that the endo was sending to her. I do know she read the one from the surgeon when he was telling her to go and give me the radiation even with my draining stomach wound etc.

So is there anything I should ask her when I go, like why is she chosing one over the other? It seems this hospital just has a "protocol" for everything. I learned that in the ICU. Its like nothing is suppose to go out of their protocol box, like me refusing heparin etc. Refusing the pic line etc.

Since my cancer is so rare and agressive I just want the best treatment, but since its so rare I feel like I am more of a guinea pig etc. 

So if anyone has any insight I am listening, TIA.


----------



## Christine

> Christine, wanted to say I hope your ankle is feeling better. I didnt read the whole thread, just quickly glanced at it. Hope you get the treatment that you need to help you.



Thanks for asking.  It's just okay.  I had an MRI.  I have tenosynovitis of the posterior tibial tendonitis.  Most people end up getting surgery.  I'm back in my walking cast trying to bring the inflammation down.  Grrrrr....




> So is there anything I should ask her when I go, like why is she chosing one over the other? It seems this hospital just has a "protocol" for everything. I learned that in the ICU. Its like nothing is suppose to go out of their protocol box, like me refusing heparin etc. Refusing the pic line etc.



Do you mean asking her why she might be choosing Thyrogen and bloodwork over Thyrogen and a scan with bloodwork?

I always ask why they are making the choice they do and what their rationale is and why they wouldn't choose the other option.  I'm sure my doctors LOVE me.


----------



## luvmarypoppins

In anticipation of my rad. onc. visit on thurs., just wanted to know if you had the scan for a 1 year rai follow up, what was the radiation dose? and what were the radiation precautions?

Are they the same as regular rai? Like no handling food, rubber gloves, sleeping by yourself, using the bathroom by yourself, wash your own dishes etc? Just thinking about the gloves because we dont have any.

TIA.


----------



## Christine

luvmarypoppins said:


> In anticipation of my rad. onc. visit on thurs., just wanted to know if you had the scan for a 1 year rai follow up, what was the radiation dose? and what were the radiation precautions?
> 
> Are they the same as regular rai? Like no handling food, rubber gloves, sleeping by yourself, using the bathroom by yourself, wash your own dishes etc? Just thinking about the gloves because we dont have any.
> 
> TIA.



For my 1 year follow up (and several more),  I had 5mci.  I was given no precautions.


----------



## WDWDancer

Can anybody help me with this..............sorry so long

Hi all I am 24 and recently started seeing an Endo because a CT of my neck showed enlarged lymph nodes and a possible goiter on my thryoid. I had a ultrasound of the thryoid which showed a 1.4cm nodule along with other smaller nodule's on the thryoid. My family doctor had run lab work and my TSH came back at 3.13 she sent me to the Endo for further evaluation. I've been extremely fatigued, muscle weakness, trouble swolling, always feel like a sore throat, cold intorlerent, hair falling out...you get the picture :dizzy: This wasn't the first time my thryoid was checked its been done numerous times in the past and always came back total TSH between 1.1-2 which ever doctor said was normal. So the Endo saw me talked about possibly Hashimotos...she ordered a FNA Biopsy ultrasound guidance of the 1.4 cm nodule which came *back abundant colloid, hemosiderin-laden histiocystes and scattered follicular cell nuclei with hemmorrhage* the Endo said that its mostly good news and we will follow up in 6-12 mts. The most recent labs she ran came back Total T3 = 1.58TSH = 5.53T-Uptake= 29%T4= 10.6FTI = 3.07 I'm on no medication and every week am feeling worse...is this normal treatment option watch and wait???? I'm also 5'8 and 132 pds I use to work out heavy and eat a very clean diet but for the last month it takes all my energy to even do a easy workout  THANK YOU FOR ANY HELP


----------



## Christine

WDWDancer said:


> Can anybody help me with this..............sorry so long
> 
> Hi all I am 24 and recently started seeing an Endo because a CT of my neck showed enlarged lymph nodes and a possible goiter on my thryoid. I had a ultrasound of the thryoid which showed a 1.4cm nodule along with other smaller nodule's on the thryoid. My family doctor had run lab work and my TSH came back at 3.13 she sent me to the Endo for further evaluation. I've been extremely fatigued, muscle weakness, trouble swolling, always feel like a sore throat, cold intorlerent, hair falling out...you get the picture :dizzy: This wasn't the first time my thryoid was checked its been done numerous times in the past and always came back total TSH between 1.1-2 which ever doctor said was normal. So the Endo saw me talked about possibly Hashimotos...she ordered a FNA Biopsy ultrasound guidance of the 1.4 cm nodule which came *back abundant colloid, hemosiderin-laden histiocystes and scattered follicular cell nuclei with hemmorrhage* the Endo said that its mostly good news and we will follow up in 6-12 mts. The most recent labs she ran came back Total T3 = 1.58TSH = 5.53T-Uptake= 29%T4= 10.6FTI = 3.07 I'm on no medication and every week am feeling worse...is this normal treatment option watch and wait???? I'm also 5'8 and 132 pds I use to work out heavy and eat a very clean diet but for the last month it takes all my energy to even do a easy workout  THANK YOU FOR ANY HELP




I saw your post on the community board and answered you there!


----------



## es45

WDWDancer: are your iron and Vitamin D levels okay?


----------



## WDWDancer

es45 said:


> WDWDancer: are your iron and Vitamin D levels okay?



Yep - Vitamin D is excellent (73) and Iron is within the normal range


----------



## luvmarypoppins

Christine said:


> Thanks for asking.  It's just okay.  I had an MRI.  I have tenosynovitis of the posterior tibial tendonitis.  Most people end up getting surgery.  I'm back in my walking cast trying to bring the inflammation down.  Grrrrr....
> 
> 
> 
> 
> Do you mean asking her why she might be choosing Thyrogen and bloodwork over Thyrogen and a scan with bloodwork?
> 
> I always ask why they are making the choice they do and what their rationale is and why they wouldn't choose the other option.  I'm sure my doctors LOVE me.



Christine - sorry, another newbie question here, since its my lst follow up. So "if" I have to do the diet, scan and then??? follow up blood work when will that be? The bloodwork?

Somehow I have a feeling this is turning into another nightmare for me. I was thinking I would just do the diet and scan, now I have to have  blood work too? I am only stressing because we leave for disney on May 18th. So I figure if I start the diet friday April 30th, then the scan would be sat. May14th? and did I remember someone saying something about blood work 5 days later? That would be terrible because that is when I would be in Florida!!! So if that is the time frame we are looking at I am afraid she will put if off for another 2 weeks etc. I did go out yest. and by alot of stuff for the diet, but its mostly stuff we would eat or could eat anyway or that would keep etc. 
Why is this stressing me out so much?


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## BLTtinkerbell

I just found out earlier this week that I have Grave's Disease.  I went for a physical last month and mentioned that I was feeling really tired.  I didn't think much of it, figured they would add blood test to see if I was anemic.  Thankfully, my doctor also added thyroid blood test.  I was told the results showed my TSH was low and free T4 was high, so I should see an endocrinologist to check for hyperthyroidism.  I went to the endo. two weeks later and she pointed out that my hands have a slight tremor that I never noticed before.  My heart rate was high, so I was given a script. for Propanolol.  I was told to take half a pill at bedtime to start and then increase to whole pill.  The pills are 10 mg, small & difficult to cut in half, but I did do it.  The endo. also ordered more blood work to compare numbers.  She said based on the numbers, I should have a thyroid uptake and scan.  I did that last week and got a call this Tuesday saying I have Grave's Disease.  I was given a script. for Methimazole to take at bedtime along w/the Propanolol.  Right now I am taking 1 10 mg pill and she said I will have to start taking 2 after this week.  I picked up a book by Mary J. Shomon to learn more about Grave's Disease.  I am trying to to find out all I can.  As far as I know, no one in my family has this.  I am open to comments/suggestions from all.  Thanks and be well.


----------



## luvmarypoppins

Well I am back from the radiation oncologist. She said I will have the horrid LID (she really wanted me to start it yesterday) and then the thyrogen shots (I asked her for zofran this time as she usually just does compazine, I told her that is useless on me) and I will get the scan on May 14th I think. She will immediately discuss the results with me, but then the blood test results I will be on vacation, so she said she would call etc. She says the scan could be normal but the blood tests could be abnormal??? and then she would have to do something else to figure out where the cancer was etc???

Does this sound about right???

The only good thing she said was that next year it will only be 2 thyrogen shots and the blood test.


----------



## Christine

luvmarypoppins said:


> Well I am back from the radiation oncologist. She said I will have the horrid LID (she really wanted me to start it yesterday) and then the thyrogen shots (I asked her for zofran this time as she usually just does compazine, I told her that is useless on me) and I will get the scan on May 14th I think. She will immediately discuss the results with me, but then the blood test results I will be on vacation, so she said she would call etc. She says the scan could be normal but the blood tests could be abnormal??? and then she would have to do something else to figure out where the cancer was etc???
> 
> Does this sound about right???
> 
> The only good thing she said was that next year it will only be 2 thyrogen shots and the blood test.




Sounds right.

The Tg blood test is the most sensitive marker for residual or recurring thyroid cancer.  Often times, people will have elevated Tg but their scan will appear negative or "clean".  What that means is that there is thyroid cancer there but it isn't taking up iodine well if at all.  That's another matter to deal with...


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## es45

luvmarypoppins said:


> Well I am back from the radiation oncologist. She said I will have the horrid LID (she really wanted me to start it yesterday) and then the thyrogen shots (I asked her for zofran this time as she usually just does compazine, I told her that is useless on me) and I will get the scan on May 14th I think. She will immediately discuss the results with me, but then the blood test results I will be on vacation, so she said she would call etc. She says the scan could be normal but the blood tests could be abnormal??? and then she would have to do something else to figure out where the cancer was etc???



luvmarypoppins: Just wanted you to know that I have a scan scheduled for May 14th too. Mine is at 2 PM. Here's hoping that we both get good results.


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## es45

WDWDancer said:


> Yep - Vitamin D is excellent (73) and Iron is within the normal range



WDWDancer: Sorry that I can't be much help as that was my only thought as to a potential problem. I hope you find the answers soon; I know how frustrating it can be.


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## mrsklamc

How long do you have to be off your synthroid for a follow up scan?


----------



## es45

mrsklamc said:


> How long do you have to be off your synthroid for a follow up scan?


4-6 weeks.


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## mrsklamc

And you have to be off the other one- I can't think of what it's called- for 2 weeks? The other pill, not the shots?


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## es45

mrsklamc said:


> And you have to be off the other one- I can't think of what it's called- for 2 weeks? The other pill, not the shots?



I think you mean Cytomel. Correct; you have to be off of it 2 weeks.


----------



## Justin the Hook

BLTtinkerbell said:


> I just found out earlier this week that I have Grave's Disease.  I went for a physical last month and mentioned that I was feeling really tired.  I didn't think much of it, figured they would add blood test to see if I was anemic.  Thankfully, my doctor also added thyroid blood test.  I was told the results showed my TSH was low and free T4 was high, so I should see an endocrinologist to check for hyperthyroidism.  I went to the endo. two weeks later and she pointed out that my hands have a slight tremor that I never noticed before.  My heart rate was high, so I was given a script. for Propanolol.  I was told to take half a pill at bedtime to start and then increase to whole pill.  The pills are 10 mg, small & difficult to cut in half, but I did do it.  The endo. also ordered more blood work to compare numbers.  She said based on the numbers, I should have a thyroid uptake and scan.  I did that last week and got a call this Tuesday saying I have Grave's Disease.  I was given a script. for Methimazole to take at bedtime along w/the Propanolol.  Right now I am taking 1 10 mg pill and she said I will have to start taking 2 after this week.  I picked up a book by Mary J. Shomon to learn more about Grave's Disease.  I am trying to to find out all I can.  As far as I know, no one in my family has this.  I am open to comments/suggestions from all.  Thanks and be well.




My wife just had her Thyroid removed back in December and this was the course of action she took also. She had Graves and the irregular heart beat and the constant tiredness. Her resting heart rate was about 115 BPM.  She ended up with all the heart meds and they worked for almost 3 years to get her leveled with medication and it started not to work, which was the only reason they had it removed.  Good luck with everything, standing next to her through this whole thing has taught me a lot about this problem!


----------



## 6789

How timely that I found this thread.  I took DS (16) to the doctor and his thyroid is enlarged.  The Dr. ran blood tests and prescribed the ultrasound.   Blood test cam back and DS TSH was in the 600 range.  Then she ran a full blood work up and everything is out of wack.  The nurse started reading off some of the results; phosphates, vitamin D and then she got to some items she was not familiar with and stopped.  I was told the readings were 'grossly abnormal'.  I am waiting for results for DS thyroid ultrasound.  I saw them measure something...hoping it was a gland but I do not know how to read what she was doing.   I did seem to see something on the screen from a couple of angles.  Technician said 'good luck' as we left.  I am holding back from reading too much into that...I could drive myself insane if I did.  We are scheduled for a visit to the Endo. next week.  I am trying not to borrow trouble but I will be glad when I know something more.


----------



## luvmarypoppins

6789 said:


> How timely that I found this thread.  I took DS (16) to the doctor and his thyroid is enlarged.  The Dr. ran blood tests and prescribed the ultrasound.   Blood test cam back and DS TSH was in the 600 range.  Then she ran a full blood work up and everything is out of wack.  The nurse started reading off some of the results; phosphates, vitamin D and then she got to some items she was not familiar with and stopped.  I was told the readings were 'grossly abnormal'.  I am waiting for results for DS thyroid ultrasound.  I saw them measure something...hoping it was a gland but I do not know how to read what she was doing.   I did seem to see something on the screen from a couple of angles.  Technician said 'good luck' as we left.  I am holding back from reading too much into that...I could drive myself insane if I did.  We are scheduled for a visit to the Endo. next week.  I am trying not to borrow trouble but I will be glad when I know something more.



Wishing your ds all the best. I am sure the waiting is hard.


----------



## luvmarypoppins

es45 said:


> luvmarypoppins: Just wanted you to know that I have a scan scheduled for May 14th too. Mine is at 2 PM. Here's hoping that we both get good results.



Wishing you all the best too!! I saw your locaton. Some folks we know live in Mooresville and another couple we know just moved to Rocky Mountian? I have to ask her sister if that is the correct town.


----------



## luvmarypoppins

mrsklamc said:


> How long do you have to be off your synthroid for a follow up scan?



Just wondering if you asked about this already. I thought you said you go back Iin August. My rad onc just gave me a pre printed sheet, so I am assuming she just does this for all the patients. It says...you do not need to go off your meds for a follow up scan. Wow I am glad she uses the thyrogen shots instead!!  I dont even know what the other pill is as I dont take that, maybe christine can explain??


----------



## luvmarypoppins

Christine said:


> Sounds right.
> 
> The Tg blood test is the most sensitive marker for residual or recurring thyroid cancer.  Often times, people will have elevated Tg but their scan will appear negative or "clean".  What that means is that there is thyroid cancer there but it isn't taking up iodine well if at all.  That's another matter to deal with...



Does this sound like a dumb question to ask? Since I have the rare and agressive variant, shouldnt it want to suck it up (agressive) or maybe it means agressive as in spreading to the lymph nodes agressive and columnar cell variant stuff.  And just wondering if you can explain about what you said...that is another matter to deal with, Because it also seemed the rad. onc. didnt want to discuss HOW she would deal with it if she found it etc.  I thought you could only get 3 total iodine doses and I think I got the max 200 lst time. 

Also is this a dumb question, sorry - so if I did the diet, assume scan is normal and then do blood test and go away, would I have to do the diet again if the cancer is back and have to get more rai? Thinking iif it didnt take up the rai good in the scan then would it take it up in a bigger dose? I doubt it right??  TIA.


----------



## 6789

luvmarypoppins said:


> Wishing your ds all the best. I am sure the waiting is hard.



Thank you!


----------



## Christine

> Does this sound like a dumb question to ask? Since I have the rare and agressive variant, shouldnt it want to suck it up (agressive) or maybe it means agressive as in spreading to the lymph nodes agressive and columnar cell variant stuff.



From what I know, how aggressive a thyroid cancer is has nothing to do with how "avid" a thyroid cancer is.  The more normal the thyroid cancer (and some thyroid cancers are close to looking like normal thyroid cells and will be called "well differentiated") is, the better it sucks up RAI.  The more bizarre or abnormal the cancer cells, the less likely they are to take up RAI.  But each person's cancer is unique and a seemingly harmless, latent papillary cancer can be resistant to RAI.



> And just wondering if you can explain about what you said...that is another matter to deal with, Because it also seemed the rad. onc. didnt want to discuss HOW she would deal with it if she found it etc.  I thought you could only get 3 total iodine doses and I think I got the max 200 lst time.



In my readings, there is really no lifetime limit.  They will keep treating you until it is gone.  There is a limit they like to stop at and that is probably around 900 mci.  I know people who've had more than this.  Most likely, if you had a scan with no uptake but your Tg was elevated, they would give you another large dose of RAI.  It could just be that the tracer dose wasn't strong enough to show up on a scan if your cancer is particular avid.  It doesn't mean that an RAI treatment won't work on it, just that they need a higher dose to get it to work.  If they find that you are RAI resistant, they start looking at surgery (if they can find a measurable mass) or they may do alcohol ablation.  This is where they locate the remaining tissue and inject alcohol into it.  My coworker has had this done.  They also use this technology on Morton's Neuroma's of the foot.



> Also is this a dumb question, sorry - so if I did the diet, assume scan is normal and then do blood test and go away, would I have to do the diet again if the cancer is back and have to get more rai?



Yes, because anytime you ingest RAI you need to do the LID.



> Thinking iif it didnt take up the rai good in the scan then would it take it up in a bigger dose? I doubt it right??


No, it often does take up the bigger dose--which is a LOT more than a tracer dose.


----------



## Christine

luvmarypoppins said:


> I dont even know what the other pill is as I dont take that, maybe christine can explain??




They are talking about Cytomel which is a short-acting T3 hormone.  For those not having a Thyrogen scan, they have to go off their T4 medication.  Usually you go off of that 4-6 weeks.  After you are off of it for two weeks, they often give Cytomel.  You take that for about 2-3 weeks and stop it approximately 2 weeks prior to your scan.  It kind of gets you through much of the horrible hypo stuff.  It leaves your body pretty quickly so it doesn't interfere too much with the rising TSH.


----------



## luvmarypoppins

Christine - I just wanted to say thank you so much for all your helpful information. You are a blessing!!


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## BLTtinkerbell

Justin the Hook,
Thank you!  Good luck to you & your wife as well.


----------



## BLTtinkerbell

6789 said:


> How timely that I found this thread.  I took DS (16) to the doctor and his thyroid is enlarged.  The Dr. ran blood tests and prescribed the ultrasound.   Blood test cam back and DS TSH was in the 600 range.  Then she ran a full blood work up and everything is out of wack.  The nurse started reading off some of the results; phosphates, vitamin D and then she got to some items she was not familiar with and stopped.  I was told the readings were 'grossly abnormal'.  I am waiting for results for DS thyroid ultrasound.  I saw them measure something...hoping it was a gland but I do not know how to read what she was doing.   I did seem to see something on the screen from a couple of angles.  Technician said 'good luck' as we left.  I am holding back from reading too much into that...I could drive myself insane if I did.  We are scheduled for a visit to the Endo. next week.  I am trying not to borrow trouble but I will be glad when I know something more.



Good luck to you and your DS.  Keep us posted.


----------



## es45

BLTtinkerbell said:


> I just found out earlier this week that I have Grave's Disease.  I went for a physical last month and mentioned that I was feeling really tired.  I didn't think much of it, figured they would add blood test to see if I was anemic.  Thankfully, my doctor also added thyroid blood test.  I was told the results showed my TSH was low and free T4 was high, so I should see an endocrinologist to check for hyperthyroidism.  I went to the endo. two weeks later and she pointed out that my hands have a slight tremor that I never noticed before.  My heart rate was high, so I was given a script. for Propanolol.  I was told to take half a pill at bedtime to start and then increase to whole pill.  The pills are 10 mg, small & difficult to cut in half, but I did do it.  The endo. also ordered more blood work to compare numbers.  She said based on the numbers, I should have a thyroid uptake and scan.  I did that last week and got a call this Tuesday saying I have Grave's Disease.  I was given a script. for Methimazole to take at bedtime along w/the Propanolol.  Right now I am taking 1 10 mg pill and she said I will have to start taking 2 after this week.  I picked up a book by Mary J. Shomon to learn more about Grave's Disease.  I am trying to to find out all I can.  As far as I know, no one in my family has this.  I am open to comments/suggestions from all.  Thanks and be well.





6789 said:


> How timely that I found this thread.  I took DS (16) to the doctor and his thyroid is enlarged.  The Dr. ran blood tests and prescribed the ultrasound.   Blood test cam back and DS TSH was in the 600 range.  Then she ran a full blood work up and everything is out of wack.  The nurse started reading off some of the results; phosphates, vitamin D and then she got to some items she was not familiar with and stopped.  I was told the readings were 'grossly abnormal'.  I am waiting for results for DS thyroid ultrasound.  I saw them measure something...hoping it was a gland but I do not know how to read what she was doing.   I did seem to see something on the screen from a couple of angles.  Technician said 'good luck' as we left.  I am holding back from reading too much into that...I could drive myself insane if I did.  We are scheduled for a visit to the Endo. next week.  I am trying not to borrow trouble but I will be glad when I know something more.



I can't offer any advice but just wanted to say good luck to you both. This is a very informative board with lots of caring people that are happy to answer your questions--just like they did mine.


----------



## es45

luvmarypoppins said:


> Wishing you all the best too!! I saw your locaton. Some folks we know live in Mooresville and another couple we know just moved to Rocky Mountian? I have to ask her sister if that is the correct town.



We are about an hour from Rocky Mount, 2 from Mooresville, and 11 hours too far from WDW.


----------



## luvmarypoppins

Christine said:


> From what I know, how aggressive a thyroid cancer is has nothing to do with how "avid" a thyroid cancer is.  The more normal the thyroid cancer (and some thyroid cancers are close to looking like normal thyroid cells and will be called "well differentiated") is, the better it sucks up RAI.  The more bizarre or abnormal the cancer cells, the less likely they are to take up RAI.  But each person's cancer is unique and a seemingly harmless, latent papillary cancer can be resistant to RAI.
> 
> 
> I agree with you about the "uniquness", as my endo told me the only other patient she had with the columnar cell variant, was a guy, and his came back 3 months after the rai, so they said I am doing well. but "WELL" is a relative term to them.
> 
> So I guess I will have to take a disney break and if the blood test comes back bad, it was just be more lid and more rai, hmm. maybe I better pig out at disney !! Oh and I need to throw a stomach surgeon visit in the mix too. I dont think all is well from what he did last year also. That was holding up the whole rai. So if something is wrong I will have to work around that too. Never a dull moment!!
> 
> And OT: How is your ankle/leg doing christine? Hope you are healing and feeling better.


----------



## luvmarypoppins

luvmarypoppins said:


> Just wondering if you asked about this already. I thought you said you go back Iin August. My rad onc just gave me a pre printed sheet, so I am assuming she just does this for all the patients. It says...you do not need to go off your meds for a follow up scan. Wow I am glad she uses the thyrogen shots instead!!  I dont even know what the other pill is as I dont take that, maybe christine can explain??





Micayla, I just read my first sentence to you. I didnt mean how it sounds. Your'e a sweetie and I love reading all your budget friendly tips on the budget board. Here is my lid budget tip for you: If you dont want to be stuck with the fruits of the season during your lid, then freeze some stuff now like strawberries, blueberries etc. Helps with the variety etc. I think I would have gone nuts if I had to do it in the winter with just oranges etc.


----------



## ecutaiar

I've been hypo for going on 22 yrs. (probably longer, but that's when I was diagnosed).  I take synthroid on a daily basis.  My dose probably changes at least once a year.  My husband is usually the first to notice.  I'll get cranky or overly tired, overly emotional and he says.  I think you might need to have your bloodwork done and adjust your dose.  9 out 10, he's right.  Nice to see there are others with issues.


----------



## luvmarypoppins

es45 said:


> luvmarypoppins: Just wanted you to know that I have a scan scheduled for May 14th too. Mine is at 2 PM. Here's hoping that we both get good results.



So are you on the lid too? If so, can you share what you are eating. Oh I am not eating this unless its air popped.  I dont feellike going out and buying an air popper. I am running out of fruits to try. And I feel like a bunny with the lettuce, so I ate some hot leftovers today.


----------



## mrsklamc

luvmarypoppins said:


> Micayla, I just read my first sentence to you. I didnt mean how it sounds. Your'e a sweetie and I love reading all your budget friendly tips on the budget board. Here is my lid budget tip for you: If you dont want to be stuck with the fruits of the season during your lid, then freeze some stuff now like strawberries, blueberries etc. Helps with the variety etc. I think I would have gone nuts if I had to do it in the winter with just oranges etc.



Oh, you're sweet, I didn't take offense at all. I overplan everything. I'm wondering if I should save up vacation days, I am a bit nervous about how thyrogen has made some people feel and think I might just choose not to use it. I was up to 89 TSH and miserable, but I don't think it has to be that high.


----------



## Christine

mrsklamc said:


> Oh, you're sweet, I didn't take offense at all. I overplan everything. I'm wondering if I should save up vacation days, I am a bit nervous about how thyrogen has made some people feel and think I might just choose not to use it. I was up to 89 TSH and miserable, but I don't think it has to be that high.



You are right--it doesn't have to be that high BUT you should aim for as high as you can.  The higher the TSH the better the test as it makes the thyroid cells more avid for the tracer dose they will give you.

The first few times I scanned, my TSH was at about 130-140.  The third time, they finally gave me some Cytomel.  My TSH only made it to 98 that time.  On Thyrogen, my TSH gets around 100.

Thyrogen made me fairly queasy for a few days.  Also, I am always so freaked out by the whole process (more so than most because I'm just that kind of person) that I make myself a wreck.  I generally took off for the week of my Thyrogen scan.  Most people do not.


----------



## es45

luvmarypoppins said:


> So are you on the lid too? If so, can you share what you are eating. Oh I am not eating this unless its air popped.  I dont feellike going out and buying an air popper. I am running out of fruits to try. And I feel like a bunny with the lettuce, so I ate some hot leftovers today.



Yeah, I'm on the LID too. I've eaten granola and fruit for breakfast, a huge salad with a small amount of grilled meat for lunch, and the same for dinner. Snacks are fruit. I would love a big bowl of mac and cheese right now.

You can cook popcorn in the microwave with a paper bag and olive oil, no need for the air popper. I hear that Newman's Own makes a no-salt microwave version but I didn't see it in my stores. I also read that Trader Joe's has some no-sodium bread that would work for sandwiches with that salt-free peanut butter. I'm not hungry enough to try that yet....


----------



## mrsklamc

I'm so sorry you guys...I can relate to wanting the mac and cheese. I find that giving up dairy is the hardest part of the LID for me...I wanted ice cream, cheese, etc. so bad. Praying for you!


----------



## luvmarypoppins

es45 said:


> Yeah, I'm on the LID too. I've eaten granola and fruit for breakfast, a huge salad with a small amount of grilled meat for lunch, and the same for dinner. Snacks are fruit. I would love a big bowl of mac and cheese right now.
> 
> You can cook popcorn in the microwave with a paper bag and olive oil, no need for the air popper. I hear that Newman's Own makes a no-salt microwave version but I didn't see it in my stores. I also read that Trader Joe's has some no-sodium bread that would work for sandwiches with that salt-free peanut butter. I'm not hungry enough to try that yet....



My LID is a combo of nih,thy ca and the rad. onc. own rules. Its stressing me out. I cant even have tap water as ours is from an aquifer. I like to mix it up. They thy ca. says 6 ounces of meat but I am only suppose to have 4 etc. I think I might go over. I really dont know as I dont have a scale.  At least I use the steamfresh vegetables. I think its hard cooking meals for yourself and then a different one for the family etc. Next week my dh will be away so I am having the ds just get themselves stuff I think since I will be a mess from thyrogen tues. for sure.  And since this is NY and chinese food is everywhere I do crazy stuff like basmati rice, grilled beef or chicken with orange marmalade and snap peas. Close as I can get. I had oatmeal today, Yuck!!

I think I might try your popcorn receipe.  What would be the measurements? Thanks!


----------



## luvmarypoppins

mrsklamc said:


> I'm so sorry you guys...I can relate to wanting the mac and cheese. I find that giving up dairy is the hardest part of the LID for me...I wanted ice cream, cheese, etc. so bad. Praying for you!



Thanks Micayla. I remember saying how you kept thinking about the Taco Bell!! I dont know what my lst meal will be. I am thinking of the diner for an omlet or maybe something italian. I dont know what time my scan is yet. All I know is after that and the blood test on the 14th. I am heading somewhere very good for sure. I might do 2 good meals that day to make up for lost time 
Worse, my dh is obsessed with eating in the hospital cafeteria. They do have really good food there and after the 7 operations I had last year I am sure he knows what he likes too, but I told him no way was I eating there etc!!


----------



## mrsklamc

Eggs are ok? Or is it that egg whites are ok but not yolks? I don't remember now.


----------



## luvmarypoppins

mrsklamc said:


> Eggs are ok? Or is it that egg whites are ok but not yolks? I don't remember now.



Whites only. I am probably going to be making some no yolk noodles in a day or two. I have never had an egg white omelet. I think I will just stick to my usual banana breakfast as I suffered through oatmeal today. I actually used the oatmeal crock pot receipe from the budget board


----------



## es45

luvmarypoppins said:


> My LID is a combo of nih,thy ca and the rad. onc. own rules. Its stressing me out. I cant even have tap water as ours is from an aquifer. I like to mix it up. They thy ca. says 6 ounces of meat but I am only suppose to have 4 etc. I think I might go over. I really dont know as I dont have a scale.  At least I use the steamfresh vegetables. I think its hard cooking meals for yourself and then a different one for the family etc. Next week my dh will be away so I am having the ds just get themselves stuff I think since I will be a mess from thyrogen tues. for sure.  And since this is NY and chinese food is everywhere I do crazy stuff like basmati rice, grilled beef or chicken with orange marmalade and snap peas. Close as I can get. I had oatmeal today, Yuck!!
> 
> I think I might try your popcorn recipe.  What would be the measurements? Thanks!


Here is the recipe that I use:
http://www.foodnetwork.com/recipes/alton-brown/plain-brown-popper-recipe/index.html

I just use 1 teaspoon of oil and don't bother with the seasoning mix. Of course for the next 1.5 weeks, I won't bother with the salt, either! If using a staple worries you then you could fold over the bag several times. I've done it that way when I couldn't find the stapler. 

How do you prepare the chicken with marmalade? I might just stop for Chinese food on the 14th after my scan; sounds like you will too.


----------



## luvmarypoppins

es45 said:


> Here is the recipe that I use:
> http://www.foodnetwork.com/recipes/alton-brown/plain-brown-popper-recipe/index.html
> 
> I just use 1 teaspoon of oil and don't bother with the seasoning mix. Of course for the next 1.5 weeks, I won't bother with the salt, either! If using a staple worries you then you could fold over the bag several times. I've done it that way when I couldn't find the stapler.
> 
> How do you prepare the chicken with marmalade? I might just stop for Chinese food on the 14th after my scan; sounds like you will too.



I just do thin chicken cutlets, I figure they are about 4 ounces each. Just put them in a frying pan and after they are browned on both side I put the marmalade on top and just let it get warm and drippy. I have a big problem with dry food and swallowing due to all my surgery, neck dissection and then the doctor who saved my life the 3rd oporation just cut everything up so swallowing is an adventure sometimes. Tonight I did peach preserve and I did an additional chic ken breast with honey, that will be cold tomm with salad. I am going to use some of the noodles and vegetables and some stock I have from a chicken meal I made, make a little soup tomm. and freeze it for next week along with applesauce. Those were the only 2 things I wanted last time when I was feeling sick from the thyrogen. Now I can prepare ahead of time. 

I am thinking of going to a greek diner around here and getting something good or our favorite italian place. Hmm, maybe I will take dh take me to both. I hope my scan is not too late in the day. Last time it was like 10:30 I think. They havent told me yet. 

Also thanks about the popcorn. I am thinking of renting a movie after church sun to watch and wanted to have some with sprite. Also I am going to try and make a little salsa concotion with tomato, cilantro and onion on unsalted matzoh. Sounds fun, huh. The matzoh for NY and the salsa for when we used to live in Texas. I am sure my 3 ds will not partake.


----------



## es45

I've never used thyrogen before. Does everyone get nauseous from the shots? It sounds like it isn't mild either? I'm thinking I should do like luvmarypoppins and be prepared if the nausea is so common.


----------



## es45

luvmarypoppins said:


> I just do thin chicken cutlets, I figure they are about 4 ounces each. Just put them in a frying pan and after they are browned on both side I put the marmalade on top and just let it get warm and drippy.



This sounds like something my entire family would eat with me. Thanks.


----------



## Christine

es45 said:


> I've never used thyrogen before. Does everyone get nauseous from the shots? It sounds like it isn't mild either? I'm thinking I should do like luvmarypoppins and be prepared if the nausea is so common.



No, not everyone one gets nausea.  In fact, when I was participating in the thyroid cancer mailing list (thyca.org), most people didn't get nausea or any side effects.  

I found the nausea to be mild, not debilitating, but it just made you not want to do anything.  I never got close to having "dry heaves" or vomiting.


----------



## luvmarypoppins

es45 said:


> This sounds like something my entire family would eat with me. Thanks.



Yes as Christine said, I didnt actually vomit or have the "dry heaves" just had an unbelievable feeling of nausea like you didnt want to eat anything too etc. Also I know the lst day I had a bad headache, constant tylenol was o.k. I cant remember if I had the headache on day 2, I was more concerned with the nausea feeling. I think thinking of eating a good meal 2 days later helped alot


----------



## mrsklamc

So you guys must feel like the thyrogen is worth it, since you do it?


----------



## es45

mrsklamc said:


> So you guys must feel like the thyrogen is worth it, since you do it?



I felt crazy without Synthroid for 8 weeks the first time that I had the scan. I couldn't concentrate or stay awake. I felt awful. Even with the LID and the potential for nausea, knowing that the process is only 2 weeks, makes it worth a try for me.


----------



## luvmarypoppins

mrsklamc said:


> So you guys must feel like the thyrogen is worth it, since you do it?



The first time I was not given any options since I had almost died, the coma, and bowel obstruction, 4 operations etc. They said my body couldnt take it.  (Being off synthroid) Really only the onc. nurse talked to me, she said something weird, like Oh wow, I cant believe you are getting this. Its really expensive. (PTL we have good insurance, thank you dh!) We just usually use this for older people who cant take being off the med that long etc. I guess my body qualified as "old" then.

Now it just seems really like that is all the rad. onc. does anyway. I am assuming since the sheet is already preprinted and it seems to be the thyroid cancer "protocol" for this hospital as I saw somethig on the website. Stating using thyrogen allows our patients to have normal function/quality of life while undergoing testing, or something like that, blah, blah etc.


----------



## mrsklamc

The idea of it making me nauseous just makes me nervous I guess. If it were just a couple weeks, I can spend that holed up at home. ...I will just have to talk to my doctor as we get closer and see what she wants to do...

Had bloodwork today and passed out cold! Just checking my levels...don't go back til the first part of July so we'll see.

Thanks for the feedback so far on the thyrogen.


----------



## WDWDancer

So I found out that I am Hypothyroid...surprise surprsie they have started me on Synthyroid and I'll go back for my retest in 4-6 wks and the goiter's and cyst will be repeat FNA and ultrasound in 4-6 mts.  

I've been seeing an oncologist for my lymph nodes througout my neck had a repeat CT Scan to see if they have gone down at all but they have not changed so go back to see him on the 19th for a consultation on what the next step is.


----------



## es45

WDWDancer said:


> So I found out that I am Hypothyroid...surprise surprsie they have started me on Synthyroid and I'll go back for my retest in 4-6 wks and the goiter's and cyst will be repeat FNA and ultrasound in 4-6 mts.
> 
> I've been seeing an oncologist for my lymph nodes througout my neck had a repeat CT Scan to see if they have gone down at all but they have not changed so go back to see him on the 19th for a consultation on what the next step is.



I hope the Synthroid relieves your symptoms.


----------



## luvmarypoppins

Just wanted to know if anyone on the LID ever had severe foot/leg cramps. I know this is from lack of potassium. Mine was so bad sat. night. I was screaming in pain. I had to eat 2 bananas and then when I went to bed Dh had to bring me a huge glass of OJ and 2 percocets leftover from my surgery last year. Usually I eat a banana every morning, but sat. morning I ate oatmeal only.

Oh and I didnt have the popcorn or salsa as I was feeling nauseous.

But I did have some Hagen Daz raspberry sorbet. Checked the ingredient list and it was acceptable. Yummy.


----------



## es45

Christine said:


> I found the nausea to be mild, not debilitating, but it just made you not want to do anything.  I never got close to having "dry heaves" or vomiting.



Christine, This is the perfect description of what my nausea feels like. I appreciate everyone's posts to this board because I was prepared when I started feeling the effects of the shot. It's not awful but if I hadn't read about the possible side effects here I would have been concerned when I started feeling queasy.


----------



## es45

luvmarypoppins said:


> Just wanted to know if anyone on the LID ever had severe foot/leg cramps. I know this is from lack of potassium. Mine was so bad sat. night. I was screaming in pain. I had to eat 2 bananas and then when I went to bed Dh had to bring me a huge glass of OJ and 2 percocets leftover from my surgery last year. Usually I eat a banana every morning, but sat. morning I ate oatmeal only.



Sorry you are having cramps. I haven't experienced any problems with the LID but I can imagine that a lack of potassium (or any nutrient) would be a common side effect.


----------



## luvmarypoppins

Well Thyrogen #1 shot and pregnancy test down. I was feeling a little "foggy" headed before. But I did cook dinner for myself. 

Anyone hear of this either? I had to sign a paper stating that I "observed" the thyrogen injection and saw there were no particles in it. She said that must be done because of something that is out on the internet????

Also I forgot to ask them to weigh me, as I am wondering how much weight I lost. I will ask tomm. if my mind remembers

And remember I said I was asking for the zofran, just in case. Well I only saw the nurse and she got the script from the rad onc. - so generous of her, I got 4, yup  TOTAL zofran pills. Thanks! I hope I dont have to use them etc.


----------



## Christine

About 6 months ago, I did read that there was some problems with Thyrogen.  That there were particles in some of the batches and that is was something like pharmaceutical waste.  I didn't get the impression that it was a hoax or anything like that.  I just though to myself "Geez...what's up with everything these days."

I have been off my thyroid meds for 5 days now.  I am preparing for a "stimulated Tg" test since I don't want to use Thyrogen.  I'm going to try to make it for 3 weeks.  I wonder if I can.  I was in my early 30s the last time I did withdraw from meds.  I'm a lot older and crankier these days.  Uuuggggh..I just hate dealing with this FOREVER it seems.


----------



## luvmarypoppins

Christine how is it going?

Well I got thyrogen shot #2 today and havent felt nauseous at all PTL!! Just tired. Hmm, now its a semi foggy headache and ringing in my ear. 

I had the nurse weigh me and I have lost 10 lbs. in 2 weeks. Last time I lost 20 lbs in the 2 weeks. 

Tomm. they said they will go over the radiation precautions with me when I get the pill. The one nurse already said 3 feet away, double flush the toilet, glad my dh is at a conference. I will just have to stay away from the ds etc.

I am like Pavlovs dogs salivating over food commercials on tv. Worse I sat with my ds in the wendys drive in line. I told him he could get something for taking me etc.


----------



## Christine

luvmarypoppins said:


> Christine how is it going?
> 
> Well I got thyrogen shot #2 today and havent felt nauseous at all PTL!! Just tired. Hmm, now its a semi foggy headache and ringing in my ear.
> 
> I had the nurse weigh me and I have lost 10 lbs. in 2 weeks. Last time I lost 20 lbs in the 2 weeks.
> 
> Tomm. they said they will go over the radiation precautions with me when I get the pill. The one nurse already said 3 feet away, double flush the toilet, glad my dh is at a conference. I will just have to stay away from the ds etc.
> 
> I am like Pavlovs dogs salivating over food commercials on tv. Worse I sat with my ds in the wendys drive in line. I told him he could get something for taking me etc.




That's great--you are in the HOME stretch.  I wish I wasn't so freaked out about the Thyrogen and the weird reaction I had.

I've been off work for a few days getting my DD moved out of her dorm and then I teleworked yesterday doing some online training.  Easy stuff.  Today, I got to work and had to do my *real* work.  OMG, something is wrong with me.  I think I am already feeling the effects of no meds after day 6.  Not good.  My job is VERY financial and requires a lot of concentration.  While, physically, I feel decent, mentally, I've been struggling all day.  I really don't think I can make it and do a decent job at work.

Soooo...I've put in a call to my endo to explain what's going on and that it's not going to be a good time for me to do this.  I'm either going to have my Tg test done today with only 6 days off meds or I may just throw it all in and try it sometime later.  At any rate, I haven't heard back from him and it will be his decision.  

The last time I went hypo, I was in my mid-30s.  I swear I didn't notice anything until at least 2 weeks into it.  I guess getting older makes it harder.  I feel like I cannot concentrate on my job or even think.  It's like my mind is really slow.


----------



## luvmarypoppins

So Christine what happened? Just wondering why you are not liking Thyrogen?

Well yest. I got the radiation dose. They still told me stuff like flush the toilet twice, dont let dh sleep with me (glad he is at a conference until tonight) drink tons of water among other things as they dont want the radiation in me or my colon etc. they said. Also the 3 foot rule etc. I am glad I have alot of faith because this is a long weary journey right now. 

I am just getting so sick and tired of this. I am glad tomm. is the last day. and tues. I am going to disney, it will be a great anniv. and b day for me and oh did I mention I made about 10 adrs for 5 days. I think I am in Piglet mode and will turn into Pooh by the time we get out of there, oh I am dreaming of places like Kona, Coral Reef, Narcoosees etc.


----------



## Christine

luvmarypoppins said:


> So Christine what happened? Just wondering why you are not liking Thyrogen?



Well, the doctor called back yesterday and I went through it with him.  He said that 6 days off meds was just too early for a test.  So he wants me to take Cytomel (short acting T3) for 6 days, and then be off all meds another 6 days.  Apparently the 6 days on Cytomel will make me feel normal while the T4 leaves my body and then I'll probably feel like poop again for 4 of the last 6 days.  

I couldn't pick up the perscription yesterday so I'm having another rough day.  On top of it all, I am feeling panicky all the time.  This withdrawal is really messing with me.

As for the Thyrogen, on my third round of it back in 2006, I had a weird, freaky reaction to it that last for 3 hours in the middle of the night.  I got REAL hot, real red, and my heart rate was about 160 for several hours.  Don't want to have that (or worse) happen again, which is why I'm doing it this way.


----------



## luvmarypoppins

es45 said:


> luvmarypoppins: Just wanted you to know that I have a scan scheduled for May 14th too. Mine is at 2 PM. Here's hoping that we both get good results.



Best of luck tomm. My scan is for 12:30 and I doubt that will happen. Probably more like after 1. Hmm, I am thinking one more crappy meal, one banana in the morning, throw in the water to get rid of the radiation and other stuff, hmm, hmm. I will be in disney on tues. sitting on my Polynesian balcony. I have about 10 adrs for 9 days, my dh and I are going to be eating well for my b day and our anniv. So the 10 lbs. will probably be back soon!!


----------



## Christine

Hoping everyone has a beautifully clean scan tomorrow.


----------



## es45

Christine said:


> Well, the doctor called back yesterday and I went through it with him.  He said that 6 days off meds was just too early for a test.  So he wants me to take Cytomel (short acting T3) for 6 days, and then be off all meds another 6 days.  Apparently the 6 days on Cytomel will make me feel normal while the T4 leaves my body and then I'll probably feel like poop again for 4 of the last 6 days.
> 
> I couldn't pick up the perscription yesterday so I'm having another rough day.  On top of it all, I am feeling panicky all the time.  This withdrawal is really messing with me.



Sorry to read that you are having a rough time, Christine. I hope the Cytomel relieves your symptoms.



luvmarypoppins said:


> Best of luck tomm. My scan is for 12:30 and I doubt that will happen. Probably more like after 1. Hmm, I am thinking one more crappy meal, one banana in the morning, throw in the water to get rid of the radiation and other stuff, hmm, hmm. I will be in disney on tues. sitting on my Polynesian balcony. I have about 10 adrs for 9 days, my dh and I are going to be eating well for my b day and our anniv. So the 10 lbs. will probably be back soon!!



How did it go? Had mine with a very talkative technician. He said everything looked great. I get the official results Monday but his comments put me at ease. I hope you get great news too.

Enjoy the Poly. Be sure to have a Lapu Lapu on the beach for me while watching Wishes!


----------



## luvmarypoppins

Christine - hope you are getting the meds balanced out

Well I survived the scan. It was a nightmare and I was crying. My appt. was for 12:30. Of course dh gets me there late at 12:50. They said now I must wait till 2 pm. I was mad because I get the dresssing down from the scheduler and dh doesnt admit its all HIS fault. I just cry and dont speak to dh. They throw me a box of tissues.

That scan was torture. I guess its bad since I already had 3 back surgeries, plus add in the 2 mesh stomach implants and throw in the neck dissection and they expect you not to move the whole time. I tried my hardest.

I got the results right away..and christine what does this mean. The rad onc. says she likes to see it a 0.5 but mine was 1.0. She said it could be a salivary gland shadow and sometimes even people with a 2.0 are o.k. She just said she will see me in 6 months, so I am guessing she expects it to be ok. (the blood test). I wont know those results till friday so I have to call the onc. nurse from disney. 

This whole day has just left me emotionally and physically drained. At least dh took me out to eat and I ate alot of food, yeah butter, cake, seafood, cheese, bread etc. My stomach hurt right away. I think it wasnt use to real food.

es45- hope you get a good number on monday too.


----------



## es45

luvmarypoppins said:


> That scan was torture. I guess its bad since I already had 3 back surgeries, plus add in the 2 mesh stomach implants and throw in the neck dissection and they expect you not to move the whole time. I tried my hardest.
> 
> This whole day has just left me emotionally and physically drained. At least dh took me out to eat and I ate alot of food, yeah butter, cake, seafood, cheese, bread etc. My stomach hurt right away. I think it wasnt use to real food.



Oh, your experience sounds just awful. I'm sorry that it was so uncomfortable. I felt awful after eating too. I didn't think I overdid it but perhaps it was what I chose to eat instead of how much.

I hope your trip eases your anxiety and keeps your focus off the scan until you call the nurse on Friday.


----------



## Christine

es45--congrats on your scan!!  Sounds good.

luvmarypoppins--those scans can be difficult.  I'm lucking that I don't have any real physical issues and the techs are good about putting pillows everywhere, but it is hard, especially if your back is hurting.  I always find that I get very cold in there.  And then, once out of nervousness, I had to pee midway through and they did have to stop the scan.

As for the numbers she gave you (0.5 and 1.0), I believe she was talking about uptake of the RAI.  As you know, the RAI kind of gets uptaken by a lot of things (salivary glands, stomach, liver, etc being the most noticeable).  They are used to seeing a certain percentage of uptake in those places.  Non-thyroid cells uptake iodine but not to the degree that thyroid cells do and that is what they use on a scan to differentiate thyroid tissue from regular tissue (not necessarily cancer at all).  So, it sounds like she saw more uptake in your salivary gland than she's used to seeing when she scans someone.  Salivary glands are pretty notorious for uptaking a good amount and sometimes one will take up more than the other.  Maybe when you scanned you just had a lot of saliva pooled in your salivary (parotid) gland and this caused it.  Sometimes you can massage that out before a scan or sometimes that might ask you to massage it out and they could do another picture.  Sounds like she's just going to settle with the results which is usual.

Have so much fun on your trip.  I am insanely jealous and wish I were going!

As for my issues, I had to back out of my test prep.  I couldn't get the Cytomel on Wednesday (pharmacy didn't have it ready).  On Thursday I was really miserable.  I'm just shocked that I was experiencing hypo symptoms on Day 7 that I wouldn't normally start getting till 3 weeks off meds.  I was unabelievable miserable and in such brain fog it scared me.  I got the prescription on my way home but knew I could never make those last 6 days off meds.  So I took a Synthroid as soon as I got home, took one yesterday morning, and by yesterday afternoon was feeling 50% better.  

And yes, I hate myself.


----------



## luvmarypoppins

es45 said:


> Oh, your experience sounds just awful. I'm sorry that it was so uncomfortable. I felt awful after eating too. I didn't think I overdid it but perhaps it was what I chose to eat instead of how much.
> 
> I hope your trip eases your anxiety and keeps your focus off the scan until you call the nurse on Friday.



I am just wondering if your digestive system is o.k. It seems that no matter what I eat I am running to the bathroom a little while after. I dont know if its from the radiation or from getting my body back on the "bad food" again etc. I have such a sensitive stomach anyway.  I am just wondering how long is this going to last? 

Oh and Micayla, here is my budget lid tip for you too..hmm what do you do with all the leftover vegetables you dont want to look at again for a long time? Well you say thank god theres a pot luck at church tomm. and you make a big old pasta salad with all the vegetables!! Hmm, happy vegetables everyone and not to outdo myself I made sausage and peppers also using all the peppers I didnt eat too.


----------



## es45

luvmarypoppins said:


> I am just wondering if your digestive system is o.k. It seems that no matter what I eat I am running to the bathroom a little while after. I dont know if its from the radiation or from getting my body back on the "bad food" again etc. I have such a sensitive stomach anyway.  I am just wondering how long is this going to last?



You may be right about our digestion being off a bit. I'm still experiencing the same thing. It must be the iodine.


----------



## luvmarypoppins

Well my digestive issues have resolved themselves. You are right, it must be the iodine.

And I was in wal mart doinng some last minute shopipng for the trip and I managed to set the detectors off. I showed the lady my receipt and I told her I was radioactive. I also have a paper from the hosoital. They told me if the detectors are really sensitive I would eet them off. The hospital paper says until august?? The lady also told me she is having radiation for cancer too now. 

It should be interesting at the airport tues. The one time I had a pet scan I set them off too.


----------



## Christine

luvmarypoppins said:


> Well my digestive issues have resolved themselves. You are right, it must be the iodine.
> 
> And I was in wal mart doinng some last minute shopipng for the trip and I managed to set the detectors off. I showed the lady my receipt and I told her I was radioactive. I also have a paper from the hosoital. They told me if the detectors are really sensitive I would eet them off. The hospital paper says until august?? The lady also told me she is having radiation for cancer too now.
> 
> It should be interesting at the airport tues. The one time I had a pet scan I set them off too.



My coworker just had a nuclear stress test and set the sensors off at the Pentagon while he was in his car!!  I also work for DoD but our building doesn't have nuclear sensors.  So apparently nukes are okay in our building but God forbid you bring a cell phone in with a camera on it!


----------



## mrsklamc

luvmarypoppins- I am sorry your scan was so rough. Enjoy the Poly, it is #2 on my list of dream resorts! I have not stayed on site so far. Thanks for the budget tip.  

Christine- Don't hate yourself. Although I suppose it's annoying because you have to start over? How often do you scan now?

Are there any questions I should be asking about my blood tests? They just said that the thyrogobulin was less than one and the TSH was .1 and that both of those are good.


----------



## es45

mrsklamc said:


> Enjoy the Poly, it is #2 on my list of dream resorts! I have not stayed on site so far. Thanks for the budget tip.



OT, but what is your #1 dream resort? Poly is my #1.


----------



## mrsklamc

es45 said:


> OT, but what is your #1 dream resort? Poly is my #1.



AKL Savannah view.


----------



## es45

mrsklamc said:


> AKL Savannah view.



Excellent choice. That is my #2!


----------



## Christine

mrsklamc said:


> Christine- Don't hate yourself. Although I suppose it's annoying because you have to start over? How often do you scan now?
> 
> Are there any questions I should be asking about my blood tests? They just said that the thyrogobulin was less than one and the TSH was .1 and that both of those are good.




Self-loathing comes easily...

I supposedly don't have to scan anymore...period.  I was just going to have a Tg test done that was stimulated (either by Thyrogen or having my own TSH rise).  

As for your blood tests, yes a Tg of less than one is good.  "Undetectable" is preferable but you've still got time to get there.  TSH seems nicely suppressed.  Mine is at 0.3 to 0.5.  My doctor would like it lower.  They like 0.05 for some reason.


----------



## WDWBarb

I haven't had the opportunity to read this entire thread yet but I hope you don't mind if I join you.  I'm not suffering from thyroid issues myself (well, I should say, none that I am yet aware of) but my DD (who will be 16 in 2 days) has just been diagnosed with Hasimoto's.  She's been sick and suffering for almost 2 years now and has been tossed between doctors.  We've seen 5 so far and has spent most of her time with a neurologist.  I finally decided to take her to see my GYN, the man who delivered her into this world, to see if maybe she was having hormonal issues.  He was the first to tell me her thyroid was enlarged.  That made me decide to take her to her first pediatrician and he had her diagnosis within minutes (and confirmed within days from the bloodwork).  She's just been on her medication for 4 days now but feels a bit better.  She had headaches, extreme fatigue, eye problems, dizziness, swelling in her fingers and nausea (just to name a few).

This whole thing is still so new to us.  I'm reading as much as I can about it and it *seems* manageable.  But I am still so confused about why she has it, where it came from and what else I can do for her.  I know some of it is just me needing to absorb it all.

She's actually got a good attitude about it because she finally knows what she's up against and what will make her feel better (taking her meds).  But I've never been a teenager with a disease like Hashimoto's so I feel so...  unable to relate and say the right things.  The most I had to worry about at 16 was getting my license and if I was going to be invited to prom.

I'm looking forward to reading this entire thread..


----------



## luvmarypoppins

WDWBarb = Sorry to hear that your dd has to deal with this. But glad she finally got the proper dx and that the meds will help. Does your local hosp. offer any type of support group that she might want to join etc? Wishing her all the best.

es45 - did you get the final scan and blood test results?

Christine - I hope you are feeling better and back to normal.

Well when we were in disney I called the rad. onc. nurse. The night before of course I was an emotional wreck, did alot of crying and praying for sure. Also the day I called was my b day and anniversary too. We got the news that my blood test was...NEGATIVE!!! Praise God!!! So my next regular blood test is in a couple of weeks. Oh and let me just say that dh and I pigged, yup, absolutely pigged out at disney world. Burned up our whole $750 gift card on food. Hmm, amazing what an LID can do to you  I will be writing a little dining review on the boards soon.


----------



## Christine

luvmarypoppins said:


> We got the news that my blood test was...NEGATIVE!!! Praise God!!! So my next regular blood test is in a couple of weeks. Oh and let me just say that dh and I pigged, yup, absolutely pigged out at disney world. Burned up our whole $750 gift card on food. Hmm, amazing what an LID can do to you  I will be writing a little dining review on the boards soon.



Fantastic!!

Yes, I'm pretty much back to normal.  It was a rough week though.  It took days before the anxiety feelings went away.

WDWBarb--I'm glad your daughter has a diagnosis.  I know a few people who have had Hashimoto's since they were young and it seems quite manageable.  She will just need lifelong monitoring and her thyroid status can change with hormonal issues (birth control pills, pregnancy, menopause).  It is an autoimmune disorder so you know now that she may have a tendancy for those types of things.


----------



## jennz

luvmarypoppins said:


> Well when we were in disney I called the rad. onc. nurse. The night before of course I was an emotional wreck, did alot of crying and praying for sure. Also the day I called was my b day and anniversary too. We got the news that my blood test was...NEGATIVE!!! Praise God!!! So my next regular blood test is in a couple of weeks. Oh and let me just say that dh and I pigged, yup, absolutely pigged out at disney world. Burned up our whole $750 gift card on food. Hmm, amazing what an LID can do to you  I will be writing a little dining review on the boards soon.



 That's great news!!  I think the test is very stressful emotionally.  I go to the endo tomorrow and am hoping she doesn't want me to have one! 

Glad you had that gift card and looking forward to reading your dining reviews!  You were in a great place to celebrate..."what are you celebrating today?"  "cancer free!!!!"


----------



## mrsklamc

Christine- Sorry I didn't see your response about my tests before. I wanted to say thank you...We all appreciate your expertise so much.

WDW Barb- Welcome. I'm sorry you're going through this, but fortunately, of the medical conditions you can have, thyroid stuff is comparatively manageable.

luvmarypoppins, I am glad you had a wonderful trip!

Jennz- I go see her on the 9th. Hoping they will schedule my scan for August.


----------



## es45

mrsklamc said:


> Christine- Sorry I didn't see your response about my tests before. I wanted to say thank you...We all appreciate your expertise so much.


I agree; your knowledge is invaluable.


----------



## es45

luvmarypoppins said:


> es45 - did you get the final scan and blood test results?
> 
> Well when we were in disney I called the rad. onc. nurse. The night before of course I was an emotional wreck, did alot of crying and praying for sure. Also the day I called was my b day and anniversary too. We got the news that my blood test was...NEGATIVE!!! Praise God!!! So my next regular blood test is in a couple of weeks. Oh and let me just say that dh and I pigged, yup, absolutely pigged out at disney world. Burned up our whole $750 gift card on food. Hmm, amazing what an LID can do to you  I will be writing a little dining review on the boards soon.



Congrats on the good news! Glad that you were in "the happiest place on Earth" for the happiest news on Earth!  I too, received a clean report.


----------



## casndan

Hi! I was hoping to join in here so I thought I'd introduce myself quickly. My name is Cassie and I'm 28, my DH is in the Army currently serving in Iraq and we have a (almost) 10 month old son. I had a total thyroidectomy on Friday and I was diagnosed with papillary cancer on Tuesday, I'm currently on 200mcg of Synthroid and 1000mg of calcium per day, I follow up with the endo in 6 weeks to talk about RAI. I had been on synthroid for years due to being hypo and when they did the TT the path report showed that the tissue was very damaged due to hashimoto's so I suppose either way my thyroid needed to come out! I have tons of questions but I'll come back for those for now I just wanted to say hi! While I'm not really happy to be here I'm glad that this group exists!


----------



## luvmarypoppins

es45 said:


> I agree; your knowledge is invaluable.





Yes thanks christine. You are a treasure!! I am sure I drive you crazy with all my questions!!


----------



## luvmarypoppins

es45 said:


> Congrats on the good news! Glad that you were in "the happiest place on Earth" for the happiest news on Earth!  I too, got a clean report.



I am so glad you got a good report too!!


----------



## luvmarypoppins

casndan said:


> Hi! I was hoping to join in here so I thought I'd introduce myself quickly. My name is Cassie and I'm 28, my DH is in the Army currently serving in Iraq and we have a (almost) 10 month old son. I had a total thyroidectomy on Friday and I was diagnosed with papillary cancer on Tuesday, I'm currently on 200mcg of Synthroid and 1000mg of calcium per day, I follow up with the endo in 6 weeks to talk about RAI. I had been on synthroid for years due to being hypo and when they did the TT the path report showed that the tissue was very damaged due to hashimoto's so I suppose either way my thyroid needed to come out! I have tons of questions but I'll come back for those for now I just wanted to say hi! While I'm not really happy to be here I'm glad that this group exists!



Hi Cassie! Glad you made it over here. Your little guy is precious. My cancer is papilary too but with a rare variant. I take 200 mg of synthroid too. I do tend to be a little hyper and emotional but my dh and 3 ds have had to live with it for the last year so they know what to expect now. If you have any questions, ask away, Christine is the best and I guess we can all chime in too!!  We have some old friends in Wilmington. I think they live on Shakespeare Drive or Nautilus? I cant remember. Wishing you all the best. Hang in there.


----------



## es45

casndan said:


> Hi! I was hoping to join in here so I thought I'd introduce myself quickly. My name is Cassie and I'm 28, my DH is in the Army currently serving in Iraq and we have a (almost) 10 month old son. I had a total thyroidectomy on Friday and I was diagnosed with papillary cancer on Tuesday, I'm currently on 200mcg of Synthroid and 1000mg of calcium per day, I follow up with the endo in 6 weeks to talk about RAI. I had been on synthroid for years due to being hypo and when they did the TT the path report showed that the tissue was very damaged due to hashimoto's so I suppose either way my thyroid needed to come out! I have tons of questions but I'll come back for those for now I just wanted to say hi! While I'm not really happy to be here I'm glad that this group exists!



Hi, Cassie,

Welcome!  I had a near-total thyroidectomy, due to Papillary cancer, about 20 years ago and RAI about 10 years ago. I'm sorry to read that you are going through this with DH in Iraq and such a young child at home. I hope that we can provide some support as you navigate through all of this.

BTW, I live just outside of Raleigh. We'll be driving through your area on the way to Holden Beach this weekend.


----------



## mrsklamc

Holy Cow! 5 months post RAI and my left cheek just swelled up like a chipmunk!


----------



## es45

mrsklamc said:


> Holy Cow! 5 months post RAI and my left cheek just swelled up like a chipmunk!



Oh my, have you called the doctor yet? I believe you have an infected salivary gland and you need a round of antibiotics for this. I'm sure someone else can chime in who has more knowledge about this RAI side effect.


----------



## mrsklamc

es45 said:


> Oh my, have you called the doctor yet? I believe you have an infected salivary gland and you need a round of antibiotics for this. I'm sure someone else can chime in who has more knowledge about this RAI side effect.



Actually there just happened to be a dr. here when it happened! He didn't think it was an infection though, just a blockage, and said to suck on lemon drops. I thought I would be past any surprise radiation side effects by now!


----------



## es45

mrsklamc said:


> Actually there just happened to be a dr. here when it happened! He didn't think it was an infection though, just a blockage, and said to suck on lemon drops. I thought I would be past any surprise radiation side effects by now!



Yeah, it does seem rather late for side effects.  Massaging the area and using hot or cold compresses should alleviate any discomfort as well as using the lemon drops. I hope it doesn't last long.


----------



## luvmarypoppins

mrsklamc said:


> Holy Cow! 5 months post RAI and my left cheek just swelled up like a chipmunk!



Ouch Micala, this has happened several times to me already. The np at the surgeon told me it means the salivary gland is not draining properly. It can happen at any time etc. I think she said to drink alot of water, take tylenol if you need it, apply compresses to it (I think warm?), mine told me if it doesnt go away in 3 days to call them and they will give me an antibiotic, of course if its really bad call your surgeon etc. Hope you feel better soon.


----------



## donalduck

Hi I didn't know where else to post this.  If someone could please help me find out what this is and how I can treat it.  Thank you

I have had hot ears my whole life I am 32 now. It has happened to me all of my life. It is getting very bad now. Every day it turns hot red like on fire. Sometimes it's just one ear sometimes both ears. The only thing that I have found that works is putting my whole head under the sink and soaking both of my ears and neck and head with cold water. Sometimes after I put the cold water all over my head I go sit outside with no coat on. It works pretty good in the winter time. This is the only solution I have found to cool them off fast. And sometimes even after I do all that they will start to turn hot red again. I have no idea what causes it. I don't have high blood pressure. Please let me know if there is any other way to stop it.


----------



## kathleena

donalduck said:


> Hi I didn't know where else to post this.  If someone could please help me find out what this is and how I can treat it.  Thank you
> 
> I have had hot ears my whole life I am 32 now. It has happened to me all of my life. It is getting very bad now. Every day it turns hot red like on fire. Sometimes it's just one ear sometimes both ears. The only thing that I have found that works is putting my whole head under the sink and soaking both of my ears and neck and head with cold water. Sometimes after I put the cold water all over my head I go sit outside with no coat on. It works pretty good in the winter time. This is the only solution I have found to cool them off fast. And sometimes even after I do all that they will start to turn hot red again. I have no idea what causes it. I don't have high blood pressure. Please let me know if there is any other way to stop it.



Doubtful this has anything to do with thyroid, which is the topic of this thread.  You can try reading this page

http://www.peterbe.com/One-hot-ear


----------



## donalduck

Ya I read that page and I have posted on there.  I have also posted on there.  
Thanks anyway.


----------



## casndan

Does anyone remember how long it took the lump in the throat feeling to go away after surgery? I feel pretty good but it's driving me crazy!


----------



## mrsklamc

I'm sorry Cassie, I didn't have that feeling. I pray it goes away soon!
Is there someone who can help you when you go hypo?


----------



## casndan

Yes thankfully! I actually moved in with my parents right before the deployment started and our house is rented out, I had no idea what a good thing that would be when I did it.


----------



## luvmarypoppins

I really didnt have that feeling either. I actualy felt like like half my neck was gone, but then again it was. (sorry, sometimes I have some strange cancer humor)

I did have a hard time swallowing salad and bread though. But then again my tumor (12.5 cm) was huge and compressed my trachea so I had to get use to swallowing again, so sometimes it felt like things got stuck, but not a constant lump feeling.

I am so sorry you are going through this.Its great you have your parents for support.

So you already know you have to go hypo? Hmm, I guess I am blessed I didnt have to do that and just had 2 thyrogen shots instead etc. 

Its a journey but you will get through it, and we are always here for you too!!

Wishing you all the best. Blessings always. (And tell your dh thanks for fighting for our freedoms)


----------



## casndan

Ohmygosh, that is a huge tumor! My largest nodule was only about 2cm. 

 You know I'm not 100% sure that I'm going to have to go off my meds yet, but I'm pretty sure that my nurse told me that I'd be going on the LI Diet and off my meds, but my doctor doesn't really want to make an official treatment plan until my 6 week ultrasound.


----------



## es45

casndan said:


> Does anyone remember how long it took the lump in the throat feeling to go away after surgery? I feel pretty good but it's driving me crazy!



It took about a month for me to get rid of that feeling. It must have taken a good year to get used to wearing a necklace or turtleneck again because of my scar.


----------



## casndan

I was wrong, I DON'T have to come off my meds, they give the thyrogen shots! I'm pretty sure that's good news


----------



## mrsklamc

casndan said:


> I was wrong, I DON'T have to come off my meds, they give the thyrogen shots! I'm pretty sure that's good news



That's wonderful news. I didn't realize- I had to be w/o any thyroid meds for 7 weeks following my surgery and I guess I thought everyone had to do that.


----------



## luvmarypoppins

casndan said:


> I was wrong, I DON'T have to come off my meds, they give the thyrogen shots! I'm pretty sure that's good news



Cassie that is great news. The lst time I got the shots , shot 1 I had a terrible headache and shot 2 the next day I felt nauseous the whole time, not throwing up etc, just queasy.
This year I asked the rad. onc. for some zofran just to be prepared. Shot 1 I had a strange foggy in the head feeling and shot 2 just a little queasy, (didnt use the pills). At least next year its only 2 thyrogen shots and a blood test, no diet for me, yippee!!

Did they tell you what rad. dose you are getting. I had 200mci. 

Its good you are doing the lid in the summer, as you will have alot of fruit and fresh veg. choices. Of course, we all can help you with meal ideas etc!!

When are you starting the diet?

Wishing you all the best.


----------



## mrsklamc

luvmarypoppins, I am taking your advice...we are going to go pick some strawberries and freeze for the LID. I bought an ice cream maker that had a recipe for home made strawberry sorbet so when the time comes DH is going to make that for me from the frozen berries!


----------



## luvmarypoppins

mrsklamc said:


> luvmarypoppins, I am taking your advice...we are going to go pick some strawberries and freeze for the LID. I bought an ice cream maker that had a recipe for home made strawberry sorbet so when the time comes DH is going to make that for me from the frozen berries!



Sounds yummy!! I actually tried to eat some semi frozen strawberries and it wasnt the best considering I need alot of dental work. It was too cold. Then I tried to heat up some blackberries in the microwave and put some oatmeal on them (just the oats). I guess I wanted it to be something like a cobbler. Big mistake. I found it a little too choking for me. 

I could have went for some home made applesauce. but it was too labor intensive for me. 

I was getting sick of all the pots, pans, etc. My plan worked well. The lst week I cooked for them but the 2nd week my dh was away and I told them just to go and buy stuff. I really didnt want to cook and look at the stuff. By the 2nd week it was too emotionally draining for me like denial and wanting it etc.

Micayla, I hope you dont hae to go off your meds again and can just get the 2 thyrogen shots. Its just so much better.

But I think you should WIN the prize here for having to do the diet the longest last year. That was amazing will power and strength!!


----------



## NC State

Can I join in?  I found out Monday that I have Graves' Disease.  I thought all these months I was going through "the change of life".  Cry at nothing, hot flashes, can't sleep at night, weight gain, etc.  The doctor put me on Celexa the first of April and told me to take Tyenol PM to help to sleep all night.  Two weeks ago she added Wellbutrin.  I'm still taking those but now I'm having to take Methimazole. I will take this for six weeks and back to the lab.  

I'm just glad I know what is wrong with me.  I really thought I was going crazy.  I have a wonderful husband that still calls me "Princess" even though I was the "Evil Queen".


----------



## es45

NC State said:


> Can I join in?  I found out Monday that I have Graves' Disease.  I thought all these months I was going through "the change of life".  Cry at nothing, hot flashes, can't sleep at night, weight gain, etc.  The doctor put me on Celexa the first of April and told me to take Tyenol PM to help to sleep all night.  Two weeks ago she added Wellbutrin.  I'm still taking those but now I'm having to take Methimazole. I will take this for six weeks and back to the lab.
> 
> I'm just glad I know what is wrong with me.  I really thought I was going crazy.  I have a wonderful husband that still calls me "Princess" even though I was the "Evil Queen".



Welcome NC State! I don't know much about Graves' but I'm sure that someone who does will respond soon. I'm glad that you are on the road to recovery and it sounds like you have wonderful support in your DH. It is always my DH who  points out when it's time to go back to the endo. I'm not certain if he's just sensitive to my symptoms or if I'm driving him crazy. Perhaps it's a bit of both 

On a personal note I just have to say, "Go Pack!"


----------



## My2Pixies

Anyone have a child with hypothyroidism?  My 7yodd was just dx with this, with growth delay being her main symptom.  Just hoping to hear from someone who has also dealt with this and what to expect.  She will be starting Synthroid.


----------



## mrsklamc

My2Pixies said:


> Anyone have a child with hypothyroidism?  My 7yodd was just dx with this, with growth delay being her main symptom.  Just hoping to hear from someone who has also dealt with this and what to expect.  She will be starting Synthroid.



I had cancer, so I haven't had this exact experience, but it's my understanding that with synthroid she should have a pretty normal life once they get her dose adjusted. 

She may have to adjust again later in life, but as chronic diseases go, once you get thyroid problems diagnosed and treated, they aren't the worst thing in the world, typically.


----------



## mrsklamc

My endo had to cancel my weds. appt. today   ...and didn't have open appointments til August. My follow up scan was supposed to be in August so I asked if it could still be scheduled. 

Her assistant said it can, she will schedule it next week as soon as she finds out if the Dr. wants to do a thyrogen scan or a total withdrawal scan.

If she does a total withdrawal scan, I will be on cytomel for 4 weeks...can anyone tell me their experiences of how different you felt on cytomel vs.synthroid?


----------



## luvmarypoppins

My2Pixies said:


> Anyone have a child with hypothyroidism?  My 7yodd was just dx with this, with growth delay being her main symptom.  Just hoping to hear from someone who has also dealt with this and what to expect.  She will be starting Synthroid.



No experience either. I just take the syntrhoid for cancer too. Wishing you dd all the best.


----------



## Christine

mrsklamc said:


> My endo had to cancel my weds. appt. today   ...and didn't have open appointments til August. My follow up scan was supposed to be in August so I asked if it could still be scheduled.
> 
> Her assistant said it can, she will schedule it next week as soon as she finds out if the Dr. wants to do a thyrogen scan or a total withdrawal scan.
> 
> If she does a total withdrawal scan, I will be on cytomel for 4 weeks...can anyone tell me their experiences of how different you felt on cytomel vs.synthroid?




I felt very good on Cytomel.  It gives you a different kind of energy than normal.  I can't really explain it but when I was taking it I thought "hmmm....maybe a little T3 in my life wouldn't be a bad thing."  But then when I tried to take it along with my Synthroid, I didn't feel well.

It is very short-acting so it will go in, you will feel good, and you will then crash.  You'll take some more, feel good, and then crash.  My last doctor prescribed one of the lower doses and then had me split it up throughout the day.  Most docs prescribe it and tell you to take one bigger dose in the morning and that's it.  I would get your Cytomel dose and cut it into thirds.  Take one/third in the morning, one/third at lunch, and one after dinner.  Don't take it after 6:00 p.m. or so because it could make it hard for you to fall asleep (unless you go to bed really late).


----------



## luvmarypoppins

mrsklamc said:


> My endo had to cancel my weds. appt. today   ...and didn't have open appointments til August. My follow up scan was supposed to be in August so I asked if it could still be scheduled.
> 
> Her assistant said it can, she will schedule it next week as soon as she finds out if the Dr. wants to do a thyrogen scan or a total withdrawal scan.
> 
> If she does a total withdrawal scan, I will be on cytomel for 4 weeks...can anyone tell me their experiences of how different you felt on cytomel vs.synthroid?



I am so sorry that happened to you micayla. I had to change mine too, it took forever and many phone calls. I felt like I was being treated in a different way from the regular rad. patients who go every day etc. 

At least you will have your diet date too. 

Your endo must be really popular, busy etc. 

How was the strawberry picking?


----------



## mrsklamc

My endo is wonderful, she actually became an endo because she had thyroid cancer at 21 or 22. It was such a relief to see her.

Berries got delayed but we must go soon! Season is going to be short because it's been so warm. I'll let you know!


----------



## es45

My2Pixies said:


> Anyone have a child with hypothyroidism?  My 7yodd was just dx with this, with growth delay being her main symptom.  Just hoping to hear from someone who has also dealt with this and what to expect.  She will be starting Synthroid.



At one point my youngest was being tested for thyroid disease. I found the this site helpful:

http://www.magicfoundation.org/www

I don't imagine there are a lot of support groups since childhood thyroid disease is not common.

Sorry that I couldn't be more help; my best wishes to you and your daughter.


----------



## luvmarypoppins

Micayla - I forgot to ask how were you feeling from all the swelling? Just curious what you did to resolve it?

I got the bill accidently for my nuclear scan, this is not for the thyrogen shots or blood tests or rad. onc. visit, I think just the scan itself. It was $1,441.00. Wowsa! I am glad dh policy has no lifetime maximum. We are blessed for sure.


----------



## es45

luvmarypoppins said:


> Micayla - I forgot to ask how were you feeling from all the swelling? Just curious what you did to resolve it?



I'm wondering the same thing; I hope you are feeling better.



luvmarypoppins said:


> I got the bill accidently for my nuclear scan, this is not for the thyrogen shots or blood tests or rad. onc. visit, I think just the scan itself. It was $1,441.00. Wowsa! I am glad dh policy has no lifetime maximum. We are blessed for sure.



After insurance, my scan will cost $330. My original bill was $1,070. I too, am thankful for insurance and will work as long as I can to continue my coverage.


----------



## summy32

My son had some blood work done recently and it came back that his TSH was 5.8.  This was the first time he has ever had these levels tested so I have no idea how long it has been high.

The reason for the blood work is that he is autistic and on several meds so his psychiatrist ordered complete blood work.  None of the meds would affect his thyroid.  I spoke to a the doctors office today and they told me that his pediatrician just wants to have him retested in 3 months.  I thought she would put him on medication.  

Some people have told me that thyroid problems can cause moodiness.  About 1 1/2 years ago he went from a sweet, calm, happy child to major mood swings, tantrums, anger.  He is on Depakote for this and seems to help some, but we still see some moodiness at times.  I am now wondering if the thyroid is maybe the cause and we are just covering it with a mood stabalizer.  Is 5.8 not high enough to be on medication.  Is it normal to not medicate and wait 3 months to retest.  I was a little confused by this and asked that the doctor call me to discuss it.

Any advice would be appreciated.


----------



## mrsklamc

Summy32,

I'm sorry you're dealing with that. I don't have answers for you other than to say that I do know people can react very differently to being hypo.

Thank you for asking about the swelling! I'm sorry that I forgot to mention it got better that day. I did lemon drops, and a heat pad (thanks luvmarypoppins!) I taste salt water back there occasionally but mostly it doesn't bother me. My dentist had referred to it as a blocked stensen's gland which doesn't get a lot of hits on google, you get more info if you search for what my dr.friend called it- parotitis.


----------



## es45

summy32 said:


> My son had some blood work done recently and it came back that his TSH was 5.8.  This was the first time he has ever had these levels tested so I have no idea how long it has been high.
> 
> The reason for the blood work is that he is autistic and on several meds so his psychiatrist ordered complete blood work.  None of the meds would affect his thyroid.  I spoke to a the doctors office today and they told me that his pediatrician just wants to have him retested in 3 months.  I thought she would put him on medication.
> 
> Some people have told me that thyroid problems can cause moodiness.  About 1 1/2 years ago he went from a sweet, calm, happy child to major mood swings, tantrums, anger.  He is on Depakote for this and seems to help some, but we still see some moodiness at times.  I am now wondering if the thyroid is maybe the cause and we are just covering it with a mood stabalizer.  Is 5.8 not high enough to be on medication.  Is it normal to not medicate and wait 3 months to retest.  I was a little confused by this and asked that the doctor call me to discuss it.
> 
> Any advice would be appreciated.



It sounds like the doctor is making a good decision to wait and retest rather than adding another medication right now. I would suggest that the testing occur in one month, rather than three, in order to give you peace of mind that his symptoms are being properly addressed. I would also ask the pediatrician about the possibility that the Depakote is causing a thyroid disfunction. Good luck to you and your DS.


----------



## Kobechiev

Hello,

I have an undiagnosed Thyroid condition, meaning of course that my Thyroid makes just enough to be considered "normal" and I have all the symptoms that my doctor ignores. My mother had Hoshimoto's and is my expert on Thyroid problems. It is nice to see a thread here where you can talk about all this.

Jorie


----------



## My2Pixies

mrsklamc said:


> I had cancer, so I haven't had this exact experience, but it's my understanding that with synthroid she should have a pretty normal life once they get her dose adjusted.
> 
> She may have to adjust again later in life, but as chronic diseases go, once you get thyroid problems diagnosed and treated, they aren't the worst thing in the world, typically.





luvmarypoppins said:


> No experience either. I just take the syntrhoid for cancer too. Wishing you dd all the best.



Thank you 



es45 said:


> At one point my youngest was being tested for thyroid disease. I found the this site helpful:
> 
> http://www.magicfoundation.org/www
> 
> I don't imagine there are a lot of support groups since childhood thyroid disease is not common.
> 
> Sorry that I couldn't be more help; my best wishes to you and your daughter.



Thank you, that site has been very helpful!


----------



## mrsklamc

Trent Hamm from thesimpledollar.com (a personal finance blog) has written before about having hypothyroidism since birth, too, so _maybe_ if you emailed him he'd respond?


Got a call from my endo's office yesterday- I'll be doing a withdrawal scan, so 4 weeks just cytomel, 2 weeks nothing along w/ the LID. Hope to get a date set next week.


----------



## mrsklamc

Hit the berry farm today and picked strawberries, blueberries, and black raspberries. Hopefully when I'm on the LID they will help both with the sweets cravings and...well, they're high in fiber. I'll leave it at that.


----------



## luvmarypoppins

O.K. so who has seen the thyroid thread on the cb about the sis and the healthy lifestyle, the pcp doing the care etc???

Hmm, I decided just to read right now and not comment.

So has anyone here changed their lifestyle. Honestly I havent. If I didnt have all the other physical stuff wrong with me I might have tried to exercise more, but now since the surgeon cut the nerve I cant use my L arm from the elbow up barely at all, so its probably less for sure.

I dont eat any differently either. Just the same as I always did. None of my drs. sugeon, endo etc. ever commented about lifestyle and diet etc. Have yours??

Also just curious as to who exactly "manages" your care and what that entails etc. For example I have a "team". Pretty nuch done with the surgeon part. Now I see the endo and rad. onc. about twice a year. The endo does the blood work quarterly and forwards it to the rad. onc. ONLY the rad. onc. decides when I am doing the diet, what type of scan I am having etc.

I guess I see that everyones case is different and everyone has different people managing their care etc. I guess I should be glad I have the 2 of them kind of tag teaming right now.

Do you feel comfortable/happy in how your care/case is managed?


----------



## jennz

I haven't seen that thread, might have to check it out.

I am only seeing my endo now, my pcp refers me to her for anything that might impact my meds.  I lost function of my parathyroids after my 2nd surgery so that's always tricky w/the meds.   I'm almost 20 years post surgery now - for the first 5 years I saw my endo and oncologist.  

As far as changing my diet - nothing has ever been said and I'm on my 3rd endo (we move a lot  ).  I am making healthy changes in my life but that's because I need to lose 50 pounds! 

I'm very pleased w/my endo now, I feel that she keeps me informed on everything, always listens to me when I visit. 

Mrsklamc - where do you pick the berries at?  I want to get some!  Sorry you have to go through the withdrawal scan.


----------



## mrsklamc

I'm trying like crazy to lose weight and having no luck. 1200 calories a day, and nothing. I have another metabolic disorder too, and I just hit 30, so who knows. The official line is that synthroid doesn't affect weight, but the internet seems to be crawling with women who insist it does. 

One thing I did see someone saying online was that synthroid is T4 and you need the T3 like in cytomel to lose weight. I have no idea.


----------



## ElizK

Well, I got a surprise call from my doctor about my blood work today.  Last check done approx 6-8 months ago was ok, TSH was about 4.3.  This week's blood work puts it at 10.6.  How the heck did it take that kind of nose dive in such a short amount of time???  I have taken my prescribed dose of levothyroxine as I am supposed to. 

On the other hand... it sure explains how quickly I'm packing on the weight and why I've been so darn tired all the time.  I've had a lot of trouble sleeping since my hysterectomy in Sept, so I assumed that's what was causing the fatigue.


----------



## es45

ElizK said:


> Well, I got a surprise call from my doctor about my blood work today.  Last check done approx 6-8 months ago was ok, TSH was about 4.3.  This week's blood work puts it at 10.6.  How the heck did it take that kind of nose dive in such a short amount of time???  I have taken my prescribed dose of levothyroxine as I am supposed to.
> 
> On the other hand... it sure explains how quickly I'm packing on the weight and why I've been so darn tired all the time.  I've had a lot of trouble sleeping since my hysterectomy in Sept, so I assumed that's what was causing the fatigue.



I experienced similar problems until I went on Armour. One of the nurses called to confirm that I was even taking my Synthroid; this happened twice and I still don't know why.


----------



## ElizK

es45 said:


> I experienced similar problems until I went on Armour. One of the nurses called to confirm that I was even taking my Synthroid; this happened twice and I still don't know why.



That was the first thing she asked me... "are you still taking your prescription."   Yep, I rarely forget it.  Except today. Today I forgot.


----------



## mrsklamc

I have a recurring alarm on my cell phone... 6:30 every day.


----------



## es45

Just curious: who takes Synthroid, who takes Armour, and who takes Levoxyl, etc? As I mentioned before, I took Synthroid for 20ish years, then added Cytomel about 5 years ago before taking Armour for the first time. I'm wondering what is working best for everyone.


----------



## luvmarypoppins

I am taking 200 of name brand synthroid. My ins. wont pay for it since I am not getting the generic one. I dont want the generic based on what fillers they may use and the pharmacy maybe switching suppliers etc.


----------



## es45

luvmarypoppins said:


> I am taking 200 of name brand synthroid. My ins. wont pay for it since I am not getting the generic one. I dont want the generic based on what fillers they may use and the pharmacy maybe switching suppliers etc.



I can't stand this policy! I would take a generic then when I would get it refilled, it would be a different manufacturer. At times, I could tell a difference and it was rarely in my favor!


----------



## mickeysmyboy

luvmarypoppins said:


> I am taking 200 of name brand synthroid. My ins. wont pay for it since I am not getting the generic one. I dont want the generic based on what fillers they may use and the pharmacy maybe switching suppliers etc.



Jumping in to comment on this! My endocrinologist told me NOT to take generic for those very reasons! He said that they vary so much you end up not getting the right dosage! He also told me that if insurance wouldn't pay I should take the RX to walmart because I could pay oop for a lot less! 

Good luck!


----------



## Christine

I took Synthroid for about 13 years.  I switched to Levoxyl a few years ago due to an allergy to one of the fillers in Synthroid (povidone).  I've never noticed a difference between either med.  Feel absolutely the same.  The Levoxyl is cheaper though!


----------



## ElizK

My prescription was changed to Levothyroxine 75mcg (it was 25mcg).   How long should it take before I notice a difference?  I feel like I'm wading in chest-high water.  Every movement is that much effort.


----------



## es45

ElizK said:


> My prescription was changed to Levothyroxine 75mcg (it was 25mcg).   How long should it take before I notice a difference?  I feel like I'm wading in chest-high water.  Every movement is that much effort.



It seems like everyone is different, but for me it was about 1.5-2 weeks before I noticed a difference.

Hope you feel better soon; I remember that feeling all too well....


----------



## luvmarypoppins

Just a little update. The endo called with my blood test results and Praise God she said everything is looking GREAT! She wants me to do the bone density test and I dont have to have another blood test till september and then I will see her..and today the stomach surgeon said my stomach is doing well, just scar tissue, so I am really being blessed.


----------



## es45

luvmarypoppins said:


> Just a little update. The endo called with my blood test results and Praise God she said everything is looking GREAT! She wants me to do the bone density test and I dont have to have another blood test till september and then I will see her..and today the stomach surgeon said my stomach is doing well, just scar tissue, so I am really being blessed.



That's fantastic news!


----------



## minniebeth

luvmarypoppins said:


> Just a little update. The endo called with my blood test results and Praise God she said everything is looking GREAT! She wants me to do the bone density test and I dont have to have another blood test till september and then I will see her..and today the stomach surgeon said my stomach is doing well, just scar tissue, so I am really being blessed.



So happy to see a wonderful update, luvmarypoppins!


----------



## mrsklamc

JennZ- I'm so sorry, I didn't see your post before. I go here:

www.spencerberryfarm.com

Luvmarypoppins- I'm so glad you got great results!

I also take synthroid and just see an endo. There is a nuclear medicine dr. at the facility where I do the radioactive iodine but you don't really interact with him much.


----------



## lizbaby007

Well I have finally started to see my Thyroid level become more normal    I still occasionally have a tightness in my throat and can feel the nodules. My doctor said the last ultrasound was good and that the nodules haven't changed. I was wondering even if that is the case if I should have a biopsy done? My doc has never seemed concerned by them so I always figured I shouldn't either. 

In other fabulous news I have finally started to shed some of the weight I gained when this whole thyroid fiasco started. About 10 months ago I started taken a liquid B Complex (with B-12) . Mainly because the box said promotes Energy Metabolism. I swear within the first week I felt better than I had in a long time. I felt more energy and more alert. I told my doc about it and she said it wouldn't hurt me and if it makes me feel good then great. I only take a 1/2 dropper full 3-4 times a week but have lost 30lbs (without even changing my diet)!!!! It truly has been a blessing having more energy back and being able to feel a little more like my old self.


----------



## mrsklamc

Ok so I forget if I've asked this before but has anyone been on cytomel for several weeks or has everyone done the thyrogen? Today was my last synthroid pill and I feel a little like I'm stepping off a cliff.


----------



## polyforme

luvmarypoppins said:


> O.K. so who has seen the thyroid thread on the cb about the sis and the healthy lifestyle, the pcp doing the care etc???
> 
> Hmm, I decided just to read right now and not comment.
> 
> So has anyone here changed their lifestyle. Honestly I havent. If I didnt have all the other physical stuff wrong with me I might have tried to exercise more, but now since the surgeon cut the nerve I cant use my L arm from the elbow up barely at all, so its probably less for sure.
> 
> I dont eat any differently either. Just the same as I always did. None of my drs. sugeon, endo etc. ever commented about lifestyle and diet etc. Have yours??
> 
> Also just curious as to who exactly "manages" your care and what that entails etc. For example I have a "team". Pretty nuch done with the surgeon part. Now I see the endo and rad. onc. about twice a year. The endo does the blood work quarterly and forwards it to the rad. onc. ONLY the rad. onc. decides when I am doing the diet, what type of scan I am having etc.
> 
> I guess I see that everyones case is different and everyone has different people managing their care etc. I guess I should be glad I have the 2 of them kind of tag teaming right now.
> 
> Do you feel comfortable/happy in how your care/case is managed?



Hi everyone-first time to this thread.  I was diagnosed with graves disease about 9 years ago and have been on various medications ever since until my change in lifestyle.  I weighed 170 and decided to try the zone diet- It isn't really a diet but more like knowing the right foods to eat in the right portions etc.  
My husband helped a lot because he owns a crossfit gym and was very knowledgeable when it came to eating right.
I also got up at 5:30am and did a half hour of exercise-again with my husbands help. Several months later and 50lbs lighter I was off meds for the first time in 9 years and it has been 3 years and still no meds.
My endo as well never said anything about diet and exercise but I am now a firm believer in taking care of your body and you will be rewarded.  Once I was through making excuses not to exercise and eat right my life changed for the good in so many ways!!!!  Hopes this helps


----------



## Christine

mrsklamc said:


> Ok so I forget if I've asked this before but has anyone been on cytomel for several weeks or has everyone done the thyrogen? Today was my last synthroid pill and I feel a little like I'm stepping off a cliff.




I used Cytomel the last time I did a withdraw scan.  It's pretty good stuff.  I don't know what the directions are for you to take it.  Many doctors just prescribe one tablet a day.  This stuff is very short acting.  You may want to cut your tablet into thirds and space it out over the day so you feel more "even."


----------



## mrsklamc

Christine said:


> I used Cytomel the last time I did a withdraw scan.  It's pretty good stuff.  I don't know what the directions are for you to take it.  Many doctors just prescribe one tablet a day.  This stuff is very short acting.  You may want to cut your tablet into thirds and space it out over the day so you feel more "even."



My dr prescribed 2 a day... Do you think I should still cut them up?


----------



## es45

lizbaby007 said:


> Well I have finally started to see my Thyroid level become more normal    I still occasionally have a tightness in my throat and can feel the nodules. My doctor said the last ultrasound was good and that the nodules haven't changed. I was wondering even if that is the case if I should have a biopsy done? My doc has never seemed concerned by them so I always figured I shouldn't either.



Great news about your levels! If you continue to be uncomfortable about the nodules, you could always request a biopsy.



lizbaby007 said:


> In other fabulous news I have finally started to shed some of the weight I gained when this whole thyroid fiasco started. About 10 months ago I started taken a liquid B Complex (with B-12) . Mainly because the box said promotes Energy Metabolism. I swear within the first week I felt better than I had in a long time. I felt more energy and more alert. I told my doc about it and she said it wouldn't hurt me and if it makes me feel good then great. I only take a 1/2 dropper full 3-4 times a week but have lost 30lbs (without even changing my diet)!!!! It truly has been a blessing having more energy back and being able to feel a little more like my old self.



I regularly take B-12 too when the fatigue sets in for long periods. It really helps me get through it. Wow! 30 pounds; that's fantastic!


----------



## es45

mrsklamc said:


> My dr prescribed 2 a day... Do you think I should still cut them up?



When I was prescribed Cytomel, I took one in the morning and then one at 3 PM. You could always try Christine's suggestion about cutting them up, perhaps cutting them in half and taking it 4x daily, if your symptoms worsen.


----------



## Christine

mrsklamc said:


> My dr prescribed 2 a day... Do you think I should still cut them up?



See how you do on two a day.  If you feel too "up and down", I would cut them and space them out over the day with the last one being at about 6-7PM depending on what time you go to bed.


----------



## Christine

es45 said:


> When I was prescribed Cytomel, I took one in the morning and then one at 3 PM. You could always try Christine's suggestion about cutting them up, perhaps cutting them in half and taking it 4x daily, if your symptoms worsen.




I took one in the morning, one at lunch, and one at about 3PM.  These were 5 mg tablets spaced out.  I do go to bed very early so 3PM was good for me but if you stay up until 11:00 p.m. or so, you might need a later dose.


----------



## mrsklamc

casndan said:


> I was wrong, I DON'T have to come off my meds, they give the thyrogen shots! I'm pretty sure that's good news



I was just thinking about you and wondering how you are doing?


----------



## mcissel03

I just happen to come across this and I am glad I did.   I go tomorrow for a thyroid ultrasound.  They fear I may have thryoid cancer   I have battled cancer four times before and now this just blows.

Does the ultrasound hurt?  Is it a lot of pressure on your throat/neck?


----------



## mrsklamc

mcissel03 said:


> I just happen to come across this and I am glad I did.   I go tomorrow for a thyroid ultrasound.  They fear I may have thryoid cancer   I have battled cancer four times before and now this just blows.
> 
> Does the ultrasound hurt?  Is it a lot of pressure on your throat/neck?



No, it didn't hurt at all.  Started to seem like it was taking forever after awhile, but no pain.


----------



## es45

mcissel03 said:


> I just happen to come across this and I am glad I did.   I go tomorrow for a thyroid ultrasound.  They fear I may have thryoid cancer   I have battled cancer four times before and now this just blows.
> 
> Does the ultrasound hurt?  Is it a lot of pressure on your throat/neck?



The ultrasounds are painless and the pressure is not intense. Good luck with your test tomorrow.


----------



## MariDisney

mcissel03 said:


> I just happen to come across this and I am glad I did.   I go tomorrow for a thyroid ultrasound.  They fear I may have thryoid cancer   I have battled cancer four times before and now this just blows.
> 
> Does the ultrasound hurt?  Is it a lot of pressure on your throat/neck?



Just want to 2nd the idea that it doesn't hurt.  I have a follow up ultrasound next Tuesday (they did a thyroidectomy for Graves Disease in Feb. and found cancer).   You can feel them pressing, but it's not painful in any way.  It feels more odd than anything else because it's just a strange place for them to be messing around with.


----------



## hellokitty86

Hey guys! I hope you don't mind newcomers to your thread! (I just wrote a super long message and I wasn't logged in so I lost the whole thing! )

I'm Ashley. I was diagnosed with hypothyrodism in August of last year. My Dr. put me on 150mg synthroid, but that was too high for me so right now I'm taking 100mg synthroid. I just took a blood test last week and I'm waiting to hear the results to see if I need to change my dosage.

Last year in August I had a thyroid ultrasound which showed that I had 1 nodule on the right side of my thyroid. The Dr. wanted me to have a follow-up ultrasound in 6 months but unfortuantely I waited 10 months. I just got the results back from the Dr. and he says that the ultrasound (which is completely painless btw) shows that I have multiple "masses" (hope that means "nodules") on both sides of my thyroid! My Dr. is referring me to an endo, and now I'm a little worried.

I'm only 23, I'm not sure if that factor helps determine if the nodules could be cancerous. My Mom has Hashimoto's Thyroiditis and was diagnosed with a multi-nodule goiter so I'm hoping that's what I have. Her Dr. (who I will be seeing) isn't concerned that they are cancerous and didn't order a biopsy. I don't show signs of having a goiter however. 

Since October I've had blood results that show a slightly high white blood cell count which my Dr. attributed to another condition, but of course now that's worrying me too. I'm worried about needing a biopsy (which is kind of premature since I haven't even seen the endo yet), and the results of the biopsy if I need one. 

I suffer from anxiety so that isn't helping the situation. Anyway- if you read this far- thank you! It's nice to have a place to talk to others who suffer from thyroid issues.


----------



## WDWBarb

hellokitty86 said:


> Hey guys! I hope you don't mind newcomers to your thread! (I just wrote a super long message and I wasn't logged in so I lost the whole thing! )
> 
> I'm Ashley. I was diagnosed with hypothyrodism in August of last year. My Dr. put me on 150mg synthroid, but that was too high for me so right now I'm taking 100mg synthroid. I just took a blood test last week and I'm waiting to hear the results to see if I need to change my dosage.
> 
> Last year in August I had a thyroid ultrasound which showed that I had 1 nodule on the right side of my thyroid. The Dr. wanted me to have a follow-up ultrasound in 6 months but unfortuantely I waited 10 months. I just got the results back from the Dr. and he says that the ultrasound (which is completely painless btw) shows that I have multiple "masses" (hope that means "nodules") on both sides of my thyroid! My Dr. is referring me to an endo, and now I'm a little worried.
> 
> I'm only 23, I'm not sure if that factor helps determine if the nodules could be cancerous. My Mom has Hashimoto's Thyroiditis and was diagnosed with a multi-nodule goiter so I'm hoping that's what I have. Her Dr. (who I will be seeing) isn't concerned that they are cancerous and didn't order a biopsy. I don't show signs of having a goiter however.
> 
> Since October I've had blood results that show a slightly high white blood cell count which my Dr. attributed to another condition, but of course now that's worrying me too. I'm worried about needing a biopsy (which is kind of premature since I haven't even seen the endo yet), and the results of the biopsy if I need one.
> 
> I suffer from anxiety so that isn't helping the situation. Anyway- if you read this far- thank you! It's nice to have a place to talk to others who suffer from thyroid issues.





You may have read my previous post about my 16 year old DD just being diagnosed with Hashimoto's.  I had never heard of it and didn't know anyone (or didn't think I did - turns out I do) with thyroid problems.  Her symptoms were so wide and varied and we went to doctor after doctor with no answer.  She's just finishing her first 6 weeks on Levothyroxine (75 mcg) and has experienced *some* improvement. A return trip to the Endo Friday will hopefully tell us what we need to do next.

I'd say that since you're hypothyroid, seeing an Endo is just a good idea.  They are specialiists who can give you more insight into the condition.   

I'm a worrier myself, and going through this has been very difficult.  But I keep telling myself that no amount of worry changes the outcome of anything.  I also remember all the times I worried (which was about 99% of them until recently) where everything ended up being ok.  Stay positive!  It could very well end up being nothing to worry about.

And you can always come here to talk to friends.


----------



## hellokitty86

WDWBarb said:


> You may have read my previous post about my 16 year old DD just being diagnosed with Hashimoto's.  I had never heard of it and didn't know anyone (or didn't think I did - turns out I do) with thyroid problems.  Her symptoms were so wide and varied and we went to doctor after doctor with no answer.  She's just finishing her first 6 weeks on Levothyroxine (75 mcg) and has experienced *some* improvement. A return trip to the Endo Friday will hopefully tell us what we need to do next.
> 
> I'd say that since you're hypothyroid, seeing an Endo is just a good idea.  They are specialiists who can give you more insight into the condition.
> 
> I'm a worrier myself, and going through this has been very difficult.  But I keep telling myself that no amount of worry changes the outcome of anything.  I also remember all the times I worried (which was about 99% of them until recently) where everything ended up being ok.  Stay positive!  It could very well end up being nothing to worry about.
> 
> And you can always come here to talk to friends.



Thank you so much for your kind words.  I know worrying doesn't help anything (it actually makes things worse!) so I'm going to keep telling myself that things will be ok! I hope your daughter starts feeling 100% soon!


----------



## mrsklamc

Ashley- welcome! It is very common for women in their 20s to be diagnosed with thyroid cancer. Of course, that doesn't mean that will be your diagnosis, but if it is, we are fortunate that it's very treatable.



Been on cytomel just over a week; napped in the afternoons over the weekend and last night I was OUT from 9:30 to 6:30 this morning! (Unusual for me!) I had hoped the cytomel would keep me from being tired, but hopefully it was a one-time fluke!


----------



## luvmarypoppins

mcissel03 said:


> I just happen to come across this and I am glad I did.   I go tomorrow for a thyroid ultrasound.  They fear I may have thryoid cancer   I have battled cancer four times before and now this just blows.
> 
> Does the ultrasound hurt?  Is it a lot of pressure on your throat/neck?



Hope the test was as painless as possible for you and that the test results were good. Wishing you all the best.


----------



## luvmarypoppins

Ashley - Welcome. The biopsy is not really bad at all. Dont stress out. I know that is easy to say. I survived the regular biopsys and then had to have a core one on top of that. Heah, it wasnt too bad. I got a dinner at Outback from my dh for being a good patient. 

Hoping your endo visit goes well and wishing you all the best. Its good you are on top of this and following through. 

Micayla - So sorry to hear the meds are making you so tired. I feel bad that you have to do the withdrawl scan versus the thyrogen scan. Next year is the dr. planning on doing the thyrogen only blood test. Mine already told me she was and no diet, thank you rad. onc!!

I guess I think it would be hard to cook all the LID food for the diet for the 2 weks when you will feel so tired etc. Maybe you can cook and freeze some stuff now? I made myself some soup, but I must admit in the hot weather it wouldnt be too good. Guess salad would be good and your sorbet machine!!
Hang in there!! When do you start the lid?

Christine - hope your neighbor issues get resolved and you can have a relaxing summer.


----------



## mrsklamc

I start the LID on the 27th of this month and will be on it through my scan date of August 13.

I am planning some things to eat but I am fortunate that my DH is very up for cooking things out of the the cookbook. He hates seeing me so miserable and he feels like it gives him a way to help.

They haven't told me yet what next time will be like.


----------



## casndan

I had my 6 week follow-up ultrasound today and now I have to go back for another biopsy on Tuesday  I thought I was done with that when I had my thyroid removed! I had some lymph nodes that didn't look great or were inflamed or something. Bleh.


----------



## luvmarypoppins

casndan said:


> I had my 6 week follow-up ultrasound today and now I have to go back for another biopsy on Tuesday  I thought I was done with that when I had my thyroid removed! I had some lymph nodes that didn't look great or were inflamed or something. Bleh.



Cassie, sorry that you have to have another biopsy. Not quite sure why either, but glad they are on top of things with you. Did you have the RAI yet?


----------



## mrsklamc

I think that Tuesday I may have just taken my cytomel too close to eating. I am still pretty much feeling well...although I did find myself in the wrong lane this morning on a route I drive daily.


----------



## WDWBarb

hellokitty86 said:


> Thank you so much for your kind words.  I know worrying doesn't help anything (it actually makes things worse!) so I'm going to keep telling myself that things will be ok! I hope your daughter starts feeling 100% soon!



Hey Ashley - have you seen your Endo yet?   Just checking in...


----------



## hellokitty86

WDWBarb said:


> Hey Ashley - have you seen your Endo yet?   Just checking in...



I couldn't get an appointment until July 23 so I will be anxiously waiting until then!! This is a Dr. that my Mom has seen that she is really impressed with, and apparently is very popular so I guess (hope?) it's worth the wait! 

Thanks so much for checking on me.


----------



## hellokitty86

luvmarypoppins said:


> Ashley - Welcome. The biopsy is not really bad at all. Dont stress out. I know that is easy to say. I survived the regular biopsys and then had to have a core one on top of that. Heah, it wasnt too bad. I got a dinner at Outback from my dh for being a good patient.
> 
> Hoping your endo visit goes well and wishing you all the best. Its good you are on top of this and following through.



I just saw this! Thank you so much for your reassurance and kind words. We will see what the endo recommends at my appointment (2 weeks from today!)


----------



## kimbo0569

mcissel03 said:


> I just happen to come across this and I am glad I did.   I go tomorrow for a thyroid ultrasound.  They fear I may have thryoid cancer   I have battled cancer four times before and now this just blows.
> 
> Does the ultrasound hurt?  Is it a lot of pressure on your throat/neck?



Just found this thread and wanted to post...my mom had a biopsy on her thyroid a couple years ago and she was fine.  She said it was a bit uncomfortable but it didn't hurt.   She did not have to have any surgery, all her endo did (after talking to another friend of mine who told of her experience) was put her on synthroid (or the generic brand of it).  Because the surgeon basically said, if they found anything, they would just remove the thyroid or part of it and then put her on the medication.  My mom went to her endo (which is also mine as I have hypothyroidism), obviously concerned about the surgery and he said not necessary, they'd eliminate that part altogether and just put her right on the medication.  

Talk to your endo when you go in...hope all goes well for you.


----------



## ElizK

I posted this on the community board, but thought I might get a good answer here, too.  Here's a copy/paste of my thread:

I have recently ventured from subclinical hypothyroid to hypothyroid. In six months my TSH count went from 4.6 to 10.3. In that same time period I had a hysterectomy (info is pertinent to my question, possibly). I have gained a LOT of weight in that 6 month time period. 

I want to know if it is reasonable to expect my weight to drop back into a "normal" weight range. I started going to the gym 4 times a week, and I gained 4lbs. Very discouraging. It wasn't muscle... if it had been muscle my clothes would have fit better. 

So, if you are hypothyroid, are you able to maintain a weight that falls into the normal range? Is your doctor happy with your TSH level to fall anywhere into the "normal" range, or is he/she trying to get you closer to what your TSH was in your pre-hypothyroid days?

I appreciate any encouragement (or reality check) that you can offer. I'm so disgusted with myself right now. I've always fought the battle of the bulge, but I weigh more now than I did when I was 9 months pregnant with my oldest child!


----------



## mrsklamc

kimbo0569 said:


> Just found this thread and wanted to post...my mom had a biopsy on her thyroid a couple years ago and she was fine.  She said it was a bit uncomfortable but it didn't hurt.   She did not have to have any surgery, all her endo did (after talking to another friend of mine who told of her experience) was put her on synthroid (or the generic brand of it).  Because the surgeon basically said, if they found anything, they would just remove the thyroid or part of it and then put her on the medication.  My mom went to her endo (which is also mine as I have hypothyroidism), obviously concerned about the surgery and he said not necessary, they'd eliminate that part altogether and just put her right on the medication.
> 
> Talk to your endo when you go in...hope all goes well for you.



Ok I am very confused by this...if you have thyroid cancer, you still have to have surgery because it spreads.


----------



## angwill

ElizK said:


> I posted this on the community board, but thought I might get a good answer here, too.  Here's a copy/paste of my thread:
> 
> I have recently ventured from subclinical hypothyroid to hypothyroid. In six months my TSH count went from 4.6 to 10.3. In that same time period I had a hysterectomy (info is pertinent to my question, possibly). I have gained a LOT of weight in that 6 month time period.
> 
> I want to know if it is reasonable to expect my weight to drop back into a "normal" weight range. I started going to the gym 4 times a week, and I gained 4lbs. Very discouraging. It wasn't muscle... if it had been muscle my clothes would have fit better.
> 
> So, if you are hypothyroid, are you able to maintain a weight that falls into the normal range? Is your doctor happy with your TSH level to fall anywhere into the "normal" range, or is he/she trying to get you closer to what your TSH was in your pre-hypothyroid days?
> 
> I appreciate any encouragement (or reality check) that you can offer. I'm so disgusted with myself right now. I've always fought the battle of the bulge, but I weigh more now than I did when I was 9 months pregnant with my oldest child!




I too have hypothyroidism and have been on meds for it for about 13 years or so.  From what I have read here it seems everyone is different when it comes to weight and how it is effecting them.  Speaking for myself I have a hell of a time loosing weight but I am also getting older which doesn't help.  On weight watchers and riding my bike 45 minutes 5 days a week along with 30 minutes of weights I had to go down to between 1000-1200 calories or 20-22 points to even loose a couple lbs a month.  That is just me and I pray you do not have the struggles I have since I have gained large amounts and lost small amounts over and over again over the years.  

My doctor lets my TSH level be anywhere in the normal range but the closer the number to being hyper the faster the weight came off for me.  The one time my numbers hit the hyperthyroid range I stopped loosing as well and just hit a bad plateau.

HTH  Good luck to you it will be a lifetime struggle if you are like me.


----------



## es45

mrsklamc said:


> Ok I am very confused by this...if you have thyroid cancer, you still have to have surgery because it spreads.



Depending on size and type of cancer, some endos are choosing to control the growth with medication. Of course, it usually requires more monitoring with the patient require to have frequent ultrasounds and blood work performed.


----------



## mrsklamc

es45 said:


> Depending on size and type of cancer, some endos are choosing to control the growth with medication. Of course, it usually requires more monitoring with the patient require to have frequent ultrasounds and blood work performed.



Wow. Learn something new every day. Course I probably didn't know that cause they probably don't give you that option when it's already in your lymph nodes.  

I don't think I could do that though. I at least have the _hope_ that my scan will come back clean and I can think of myself as cancer-free. Mentally, I don't think I could deal with just knowing I had cancer and it wasn't coming OUT right away. But everyone handles stuff differently.


----------



## luvmarypoppins

mrsklamc said:


> Wow. Learn something new every day. Course I probably didn't know that cause they probably don't give you that option when it's already in your lymph nodes.
> 
> I don't think I could do that though. I at least have the _hope_ that my scan will come back clean and I can think of myself as cancer-free. Mentally, I don't think I could deal with just knowing I had cancer and it wasn't coming OUT right away. But everyone handles stuff differently.



Wow, Micayla. I feel the same way as you. Once I found out it was cancer I wanted it out asap, of course as you all know that took a while with all the complications pre surgery no less. 

Hmm, maybe christine can coment as to ... is this the new way of drs. thinking?


----------



## Christine

luvmarypoppins said:


> Wow, Micayla. I feel the same way as you. Once I found out it was cancer I wanted it out asap, of course as you all know that took a while with all the complications pre surgery no less.
> 
> Hmm, maybe christine can coment as to ... is this the new way of drs. thinking?



No, I can't really.  The *only* time I've heard that they are leaving it be is if you have a microcancer, but the only know that if you've had surgery the first time, so some of it has been removed.

Personally, I would not be comfortable with that treatment either.  I realize the odds are in your favor, but there have been some noteworthy studies that suggest that the microcancers have actually managed to spread to lymph nodes while still remaining in the microcancer stage.  And by microcancer, I mean that the cancer's size is less than 10mm (1cm).


----------



## luvmarypoppins

mrsklamc said:


> I start the LID on the 27th of this month and will be on it through my scan date of August 13.
> 
> I am planning some things to eat but I am fortunate that my DH is very up for cooking things out of the the cookbook. He hates seeing me so miserable and he feels like it gives him a way to help.
> 
> They haven't told me yet what next time will be like.



Micayla, suppose you will be pigging out this week pre lid? Wishing you all the best. Last time on the lid I lost 20 lbs, this time I lost 10. And I made sure to pig out before the diet this time too.

I think the rad. onc. told me what was for next time since she knows how difficult the diet is. Need some incentive to get through it I guess. She just told me, I didnt ask. So of course I am tickled to pieces that I only have to go to the hospital 3 times next year for that. They have such a strict routine there. It will be Mon. shot, Tues shot and friday blood test. 

Keep us updated when you can.


----------



## luvmarypoppins

casndan said:


> I had my 6 week follow-up ultrasound today and now I have to go back for another biopsy on Tuesday  I thought I was done with that when I had my thyroid removed! I had some lymph nodes that didn't look great or were inflamed or something. Bleh.



Cassie, just wondering how things were going? Wishing you all the best.


----------



## dischick4778

Hi, I'm new to this thread, just found it.  Read a bunch of posts and can't believe how many people are dealing with thyroid issues.  I just had my thyroid out back on June 25th, I had cancer and it was in the lymph nodes as well.  I am currently on the LID which really sucks.  I have the cookbook, but much of the food tastes awful.  I am making do and eating what does taste ok.  This week I am having a scan to find any diseased tissue that may be left and then I will have the radiation pill and spend a week in isolation.  I am hoping to have the pill as soon as possible.  I cannot wait to get back to normal.  This all happened so quickly for me as I never knew I had a thyroid problem.  I went to the Dr for a sore throat and came out with thyroid cancer.  I hate the fact that I've been out of work and that I don't have the energy to take care of my new baby (5 months old).  Also, we had to cancel our Disney trip.  So I am not happy about this situation for many reasons.  

But I can't believe there are so many others going through this as well.  I can't believe I have had moments of feeling sorry for myself when so many others are fighting and dealing with this as well.  Best of luck to everyone.  And here's to staying positive!


----------



## Christine

dischick4778 said:


> Hi, I'm new to this thread, just found it.  Read a bunch of posts and can't believe how many people are dealing with thyroid issues.  I just had my thyroid out back on June 25th, I had cancer and it was in the lymph nodes as well.  I am currently on the LID which really sucks.  I have the cookbook, but much of the food tastes awful.  I am making do and eating what does taste ok.  This week I am having a scan to find any diseased tissue that may be left and then I will have the radiation pill and spend a week in isolation.  I am hoping to have the pill as soon as possible.  I cannot wait to get back to normal.  This all happened so quickly for me as I never knew I had a thyroid problem.  I went to the Dr for a sore throat and came out with thyroid cancer.  I hate the fact that I've been out of work and that I don't have the energy to take care of my new baby (5 months old).  Also, we had to cancel our Disney trip.  So I am not happy about this situation for many reasons.
> 
> But I can't believe there are so many others going through this as well.  I can't believe I have had moments of feeling sorry for myself when so many others are fighting and dealing with this as well.  Best of luck to everyone.  And here's to staying positive!




Wow--you're story is similar to mine.  I had a 6 month old baby, a sore throat (viral), and in-laws on the way.  I went to an urgent care in case it was strep and came out knowing that my thyroid gland was asymetrical and on my way for a scan.  Turned out to be cancer.  That was 15 years ago.

Good luck to you.  This is a challenging time for you.  I hope you get on your meds soon and keep us posted on your scan!


----------



## mrsklamc

luvmarypoppins said:


> Micayla, suppose you will be pigging out this week pre lid? Wishing you all the best. Last time on the lid I lost 20 lbs, this time I lost 10. And I made sure to pig out before the diet this time too.



Yes...we went to Pigeon Forge, TN for the weekend; I had some great southern food as well as not limiting the Krispy Kremes  Sadly I didn't lose ANY on the LID last time but I ate a LOT of unsalted peanut butter which is high calorie so maybe if I cut back on that I will lose some. I think it will be easier this time with so many fresh fruits and veggies in season. Of course, I say that now, but I'm sure I will feel differently in a couple of weeks...


----------



## mrsklamc

dischick4778 said:


> Hi, I'm new to this thread, just found it.  Read a bunch of posts and can't believe how many people are dealing with thyroid issues.  I just had my thyroid out back on June 25th, I had cancer and it was in the lymph nodes as well.  I am currently on the LID which really sucks.  I have the cookbook, but much of the food tastes awful.  I am making do and eating what does taste ok.  This week I am having a scan to find any diseased tissue that may be left and then I will have the radiation pill and spend a week in isolation.  I am hoping to have the pill as soon as possible.  I cannot wait to get back to normal.  This all happened so quickly for me as I never knew I had a thyroid problem.  I went to the Dr for a sore throat and came out with thyroid cancer.  I hate the fact that I've been out of work and that I don't have the energy to take care of my new baby (5 months old).  Also, we had to cancel our Disney trip.  So I am not happy about this situation for many reasons.
> 
> But I can't believe there are so many others going through this as well.  I can't believe I have had moments of feeling sorry for myself when so many others are fighting and dealing with this as well.  Best of luck to everyone.  And here's to staying positive!



Welcome! The ladies here are great. And I know the last few days I was hypo, it was pretty much impossible not to feel sorry for myself no matter how I tried, so don't be too hard on yourself!


----------



## luvmarypoppins

dischick4778 said:


> Hi, I'm new to this thread, just found it.  Read a bunch of posts and can't believe how many people are dealing with thyroid issues.  I just had my thyroid out back on June 25th, I had cancer and it was in the lymph nodes as well.  I am currently on the LID which really sucks.  I have the cookbook, but much of the food tastes awful.  I am making do and eating what does taste ok.  This week I am having a scan to find any diseased tissue that may be left and then I will have the radiation pill and spend a week in isolation.  I am hoping to have the pill as soon as possible.  I cannot wait to get back to normal.  This all happened so quickly for me as I never knew I had a thyroid problem.  I went to the Dr for a sore throat and came out with thyroid cancer.  I hate the fact that I've been out of work and that I don't have the energy to take care of my new baby (5 months old).  Also, we had to cancel our Disney trip.  So I am not happy about this situation for many reasons.
> 
> But I can't believe there are so many others going through this as well.  I can't believe I have had moments of feeling sorry for myself when so many others are fighting and dealing with this as well.  Best of luck to everyone.  And here's to staying positive!



Welcome from a Long Islander!! I am sure its hard on you. But stay strong and fight tough. I know the food is hard. I like to mix it up. My rad onc. doesnt just do the lid cookbook, hers is part nih and throw in I can only drink distilled water as Suffolk County water cant be verified iodine free. Also I was only allowed 4 ounces of meat, versus the lid 6 ounces. I just did the diet again in May for my 1 year scan, I only ate a banana for breakfast since I dont like oatmeal, but did try that a few times. 2 weeks of salads is hard too so I tried to mix it up with tastes and also color looking on the plate.
I also got a little creative with the chicken by using honey on it and chilling it and for hot I used orange marmalde and basmati rice (close to chinese as I could get) with birdseye steamfresh snap peas (no salt) and also peach jelly was good on it. I rotated also between potatoes,sweet potatoes and no yolk noodles. Dessert is the greatest now with all the fresh fruit. For snacks I did nuts and the unsalted peanut butter with celery sticks. Matzoh, unsalted if I wanted something crunchy.

Are you getting thyrogen?  I know its hard when it in the luymph nodes. I had to have 47 out and 6 were positive. I have papilary but its also the rare and agressive columnar celll variant. But I am doing fine. My endo is from LIJ, but she comes out here to the hosp. where I go. 

Wishing you all the best. Any questions or if you need support just come here. The ladies are great.


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## dischick4778

Thanks so much for all the quick responses and kind words.  I have what they are calling the agressive tall cell variant so I guess that's why the Drs are pushing for things to happen so quickly.  They removed my whole thyroid as well as many lymph nodes.  The Dr basically told me he cleared me out.  It was also wrapped around my vocal cords so the surgery was longer and more complicated than usual and I still don't have my voice back fully.  But that is the least of my concerns.  

The diet is not fun, eating oatmeal every morning and salads and meat.  So boring.  But thanks for the additional tips on how to make the food more interesting.  I have my scan on Friday and will definitely update you all.  Thanks again!


----------



## mrsklamc

After giving myself some time to recover from the LID I've decided to try the South Beach Diet. The first two weeks are considered very restrictive. Compared to the LID, it will be a breeze.


----------



## Christine

mrsklamc said:


> After giving myself some time to recover from the LID I've decided to try the South Beach Diet. The first two weeks are considered very restrictive. Compared to the LID, it will be a breeze.



I agree!


----------



## luvmarypoppins

mrsklamc said:


> After giving myself some time to recover from the LID I've decided to try the South Beach Diet. The first two weeks are considered very restrictive. Compared to the LID, it will be a breeze.



Best of luck Micayla. Do you have a goal amount? I am not too familiar with it. Yest. I went and ate 2 chocolate cupcakes. I am stressing out that my stomach wound from last years surgery has opened up. I am going to the surgeon tomm. Gheesh, after the 3 cancer surgeries and then his 4 stomach/hernia/bowel obstruction surgeries, you think I would be done with this stuff. I just saw him 3 weeks ago and he said "you are good for another year", yeah right. Hmm, should I ask for a warranty or something in writing


----------



## mrsklamc

I'd like to lose 20 or 25 pounds. According to the book, South Beach dieters lose an average of 8-13 pounds during those first two weeks and 1-2 lbs per week after that. 

I'm so sorry for all your medical 'stuff.' It seems like you just get through one thing and another pops up!


----------



## Christine

mrsklamc said:


> I'd like to lose 20 or 25 pounds. According to the book, South Beach dieters lose an average of 8-13 pounds during those first two weeks and 1-2 lbs per week after that.




I know many people who've done South Beach.  Women tend to be on the lower end of that weight range (of course).  Also, depends how much you have to lose.  I only have about 10 lbs I'd always like to lose so I never get any great losses when I try anything.  Weeks will go by before I see the scale budge.

luvmarypoppins--keep us posted on how your appt. goes with the surgeon today.  I hope it's nothing.

I had my 6-month follow up with my endo on Wednesday.  I was all freaked out about going because, as you may remember, I *failed* my attempt at Synthroid withdrawal.  I thought he was going to "tsk, tsk, tsk" me and then force me to do it.  He reviewed my entire file again, agreed I was very low risk and said "Just don't do it--we won't worry about it and we'll just monitor your bloodwork and definitely continue with ultrasounds."  So that was a relief although I still feel _ashamed_ that I can't do this simple test.

I then had to get my labwork done yesterday.  Thyroglobulin and thyroid panel.  Don't you hate it when you feel like something's wrong?  When I had the blood drawn the tech only took one tube of blood.  Whenever I have a Tg test, I always have two tubes drawn because the Tg is sent out.  I just have this nagging feeling that she didn't do it right.  I keep thinking that I'm going to get a call from my doctor or lab today telling me to come back in.  I should have said something but I get tired of feeling like I'm checking up on people's own jobs.  I could be wrong and I hope I am.


----------



## dischick4778

Scan went really well today.  Dr said she saw such a small area of diseased tissue left after surgery that the radiation doseage is not going to be nearly as strong as anticipated.  I go Monday for the radiation pill.  Getting set this weekend for my "isolation".  The hardest part will be staying away from my husband and son.  But at least I will be staying with family and I feel good about my scan today.  I was fearing the worst.  It finally feels like the home stretch and I am so ready to get back to my normal.  Luckily I get to start on synthroid the 28th.  

luvmarypoppins - thank you for the encouragement and the recipe ideas. I never thought of using marmalade and it's pretty good.   

Christine - thank you for sharing your story.  I feel so good to hear something similar and know how long ago it was for you.

This thread is wonderful!!


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## mrsklamc

dischick4778-

I don't know what all you are eating now or if there is someone who will go pick items up for you, but so far I have picked up unsalted tortilla chips and unsalted peanut butter from Trader Joe's, and unsalted ketchup from my regular grocery store. The no bake cookies made with cocoa powder were a big help too because I love chocolate- but they may also have been why I lost NO weight on the LID.
Trader Joe's also had a fresh guacamole kit- the avocado helped some with the 'creamy' sensation I was missing from dairy. We also have a new ice cream maker DH will be using this time to make me fresh fruit sorbet- just fruit and lemon juice I believe, but luvmarypoppins' dietitian told her that raspberry hagen daas sorbet was OK too. 

One idea I wish I'd had when I had my treatment dose- they tell you to suck on lemon drops, and I DID until my mouth was absolutely raw, but I'm still having trouble with my saliva glands. It dawned on me at a theme park last weekend that frozen lemonade would have been wonderful, and you can make lemonade from just water, sugar, and lemon juice. I don't know if it DOES have the same effect as the lemon drops, but I just couldn't take another one.


----------



## luvmarypoppins

Hi everyone!

Christine - Hoping your blood tests were done correctly and that the results are good. Its good your endo has the blood test and ultrasound plan. I think I am starting that exclusively next year. 

dischick - Hang in there, there is light at the end of the tunnel!! Do you know what your dose is giong to be? I had 200. 150 for the normal dose and then 25 for the lymph node mets and then 25 for the columnar cell agressive variant. You will get back to being you shortly. I say I am me, just a different me, but still me. I hope the week will pass quickly for you. I just watched tv alot and when my 3 ds were out of the other room I went on the computer. Weird typing with rubber gloves on. Wishing you all the best

Micayla - wow, I would have loved the tortilla chips. Are there any bromated agents in them? My dietician was saying stuff about additives in shelf stable food etc. Remember how I was talking about doing the matzoh with some homemade pico de gallo (sp?) Those would have been great for me if I was allowed. You are lucky to get to have the cocoa power. Again, they told me no way, since we dont know how its processed etc. Wishing you all the best, but heah, you are an old pro at this by now, a seasoned veteran, right?

Well an update on me...the surgeon said as I surmised tht I have a seroma, just a side effect with the surgery. He opened it up to let it drain. Go back like aug. 2 or 3rd. There is a 50% chance there is an internal stitich that is causing this to happen, so if that is the case, I will need a day surgery to have him take it out. He said after all you have been through last year this is nothing. I am praying it will heal on its own.


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## mrsklamc

Sounds like good news! I am not sure what bromated means but the ingredients say 'Organic stone ground white corn with a trace of lime, organic vegetable oil (sunflower and/or canola and/or safflower oil.)


----------



## Christine

mrsklamc said:


> One idea I wish I'd had when I had my treatment dose- they tell you to suck on lemon drops, and I DID until my mouth was absolutely raw, but I'm still having trouble with my saliva glands. It dawned on me at a theme park last weekend that frozen lemonade would have been wonderful, and you can make lemonade from just water, sugar, and lemon juice. I don't know if it DOES have the same effect as the lemon drops, but I just couldn't take another one.



I actually thought that Dr. Ain (a specialist in Kentucky who has his own thyroid cancer listserve) had told people to stop with the lemon drops because it had an opposite affect on the salivary glands.  I used them during my first big dose and had scarring of my left gland that took over 2 years to resolve itself.  The second treatment I had, I chewed on grapes which seemed to help (frozen grapes).  It got the glands going but not to the extent of the lemon drops.


----------



## mrsklamc

Christine said:


> I actually thought that Dr. Ain (a specialist in Kentucky who has his own thyroid cancer listserve) had told people to stop with the lemon drops because it had an opposite affect on the salivary glands.  I used them during my first big dose and had scarring of my left gland that took over 2 years to resolve itself.  The second treatment I had, I chewed on grapes which seemed to help (frozen grapes).  It got the glands going but not to the extent of the lemon drops.



Wow. It was definitely stressed to me to use lemon drops...I was SO frustrated when the saliva gland problems started because I had forced myself to have SO many...I am just glad that yours finally resolved itself, my dentist told me it would but I read online that it was probably permanent, and I SO don't want to deal with chipmunk cheeks on and off for my whole life!


----------



## Christine

mrsklamc said:


> Wow. It was definitely stressed to me to use lemon drops...I was SO frustrated when the saliva gland problems started because I had forced myself to have SO many...I am just glad that yours finally resolved itself, my dentist told me it would but I read online that it was probably permanent, and I SO don't want to deal with chipmunk cheeks on and off for my whole life!



I thought mine would never go away either and, at times, was quite painful.  This was back in the dark ages and no one could tell me anything.  I ended up having an MRI done because they thought I might have had a blockage.  

I just remember I would eat and the thing would swell up and hurt.  I would massage it and sometimes it would release through saliva duct in my mouth or sometimes not.  I was just so glad when it finally stopped.


----------



## collins316

Hi everyone!
I was diagnosed with Graves about 2 years ago (hyperthyroid)
The endo I was referred to suggested I get the radioactive iodine treatment asap, not trying any meds first.  I didnt feel bad at the time, actually, I felt great.  After the RAI treatment, I felt the worst I had ever felt in my life, as I slowly went hypo.  I didnt get on meds until I was fully hypo.  I am now on the generic synthroid forever (levothyroxine) 125mcgs.  I wish I could get a higher dose, but supposedly my bloodwork comes back ok on that dose.  I still feel tired a lot, and have gained about 20 pounds since having my thyroid nuked.  No matter what I eat or how I work out, I stay I cant seem to lose the weight.  That is the frustrating part for me.  So glad to find this trhread with people in the same boat.
Bernice


----------



## dischick4778

mrsklamc - Thank you for the wonderful ideas from Trader Joe's.  This has all happened so quickly that I do not really have all the resources and have been following such a boring diet.  But they tell me as of Tuesday I can go back to eating normal.  Now, whether or not I will have an appetite is a different story.    And the frozen lemonade sounds like a wonderful addition to the lemon drops which they did suggest.

luvmarypoppins - My radiation pill dosage is going to be 150.  I am happy that I will have a tv and access to a computer, I know that will help with the isolation.  Good luck with your procedure if needed.  I'm sure you really don't want to deal with another thing but whatever it takes to make sure you're healthy!

Christine - the grapes sound like a great idea as well.  Is it the sourness that helps?  Did you try to find grapes that were more sour than sweet?  I obviously can't imagine what this is going to feel like until it happens to me, but I want to be prepared.  Would other sour candies help?  You said it would hurt when you ate, was that all foods or just particular types of food?  I don't think my Dr has stressed this part at all so I wasn't even thinking about it.  Dr barely even mentioned it, like it was nothing.


----------



## luvmarypoppins

dischick - I really didnt even find the lemon drops helpful after a day. I just found them too sour for my stomach and I already take rx for my hiatal hernia.

I chose to stay overnight in the hosp. for the dose. My dh worked with radiation so he knew what to expect etc. They really kept stressing to drink ALOT of water. You want the rad. out of your system. So you will be like a camel the lst day or two. I even got the awesome experience to keep being checked with a geiger counter while there

My instructions were to also only eat from one plate, cup and utensils and wash them after each meal in a seperate sink. Nothing disposable. They also told me my clothes would have to be held at home for 6 months and then thrown away, so I just went in the hosp. and put on a gown. My dh even surprised the rad. onc. with everything he knew and precuations so she was happy about how we would handle stuff etc.


Right after the dose I remember feeling quesy all week, not so much nauseous but quesy and the rad. does a number on your digestive and intestinal system. Think you may be spending alot of time in the bathroom. I am sure they went over the stuff like double flush the toilets, shower rinse for 10 minutes etc. I found that I could only eat a little bit of stuff and I would feel strange. 

I know everyones experience is different, so maybe the others can share theirs too. Wishing you all the best.


----------



## mrsklamc

Wow I didn't have any of those precautions and they didn't tell me to drink lots of water either....I really wish they had esp. since no kids yet but I've also read there is no evidence that parental radiation pre conception has damaged kiddos..but it still bugs me a little. 

Dischick4778- Is your dose on Tuesday? I had to wait a week after my dose to go back to eating normally. Which is about the same time all my tastebuds burned off from the radiation...yeah they acted like it was no big deal with me either.....ARGH.

Actually the saliva stuff Christine and I are talking about-- My treatment dose was back in December and I just started noticing problems in April, it happens on and off...no one mentioned anything to me about it. It's like since they can usually treat this type of cancer, they think the side effects are no big deal. If they had to live with the side effects, they wouldn't act that way, I think...


----------



## Christine

luvmarypoppins said:


> dischick - I really didnt even find the lemon drops helpful after a day. I just found them too sour for my stomach and I already take rx for my hiatal hernia.
> 
> I chose to stay overnight in the hosp. for the dose. My dh worked with radiation so he knew what to expect etc. They really kept stressing to drink ALOT of water. You want the rad. out of your system. So you will be like a camel the lst day or two. I even got the awesome experience to keep being checked with a geiger counter while there
> 
> My instructions were to also only eat from one plate, cup and utensils and wash them after each meal in a seperate sink. Nothing disposable. They also told me my clothes would have to be held at home for 6 months and then thrown away, so I just went in the hosp. and put on a gown. My dh even surprised the rad. onc. with everything he knew and precuations so she was happy about how we would handle stuff etc.
> 
> 
> Right after the dose I remember feeling quesy all week, not so much nauseous but quesy and the rad. does a number on your digestive and intestinal system. Think you may be spending alot of time in the bathroom. I am sure they went over the stuff like double flush the toilets, shower rinse for 10 minutes etc. I found that I could only eat a little bit of stuff and I would feel strange.
> 
> I know everyones experience is different, so maybe the others can share theirs too. Wishing you all the best.



luvmarypoppins--

Back when I was having my treatments, lemon drops and water were the way to go.  I started going to the Thyca conferences and seeing some of the top thyroid doctors speak and they have not come to a consensus to stop the major flushing and lemon drops.  They actually do NOT want the RAI to leave too quickly because that's when it is doing it's work.  The last bit of advice I've read is to just eat/drink normally.  It has been over a year since I followed the Thyca listserv so maybe things have changed.  The one group I did find invaluable was Dr. Kenneth Ain's listserv.  He is a "top" thyroid oncologist who works out of the University of Louisville and the patients he takes at this point are only those who have been resistant to treatment.  He has studied thyroid cancer and the treatment probably more than anyone so I really do kind of pay attention to what he says and it makes sense.  He always speaks at all the thyroid conferences and he ended up meeting his wife at one of them.  She had thyroid cancer and wrote some book (I forget her name but she was at the conference as a speaker also).  So I pretty much follow his advice when it comes to stuff like that.  If you're interested, you could join his Yahoo listserv group and just read, like I do.

I spent two treatments in the hospital and had the old gieger counter thing done.  My hospital wasn't nearly as strict with my clothes and stuff.  I had two young kids at the time so, yeah, it can make me nervous to think about it.


----------



## dischick4778

I would have been thrilled to stay in the hospital, but they are not offering that as an option.  They did say for the first 24 hours to eat/drink normal but not over do it because that is when the radiation is strongest and they want it to work.  Then they said after the first 24 hours drink like A LOT in order to flush it out.  As far as eating, they told me to stay on LID until 24 hours after the pill then back to a normal diet plus the extra fluids.

I bought cheap clothes and sheets that I am going to wash and dispose of after this is over.  They told me my clothes should be washed separately, but that once washed they would be fine again.  However, I'm just going to throw them out.  

mrsklamc - I can't believe you are still having problems so long after.  They have not mentioned that to me at all.  So disappointing.  Oh well, I guess it's a small price to pay for having my health.  But it does not sound like fun.

Christine - Thank you for the suggestion on the listserv, I will have to look into that!

Going for the pill tomorrow morning.  Will try to be in touch throughout the week.  My family is giving me an old laptop they no longer use, so I'm not sure how great it's going to work.  

Thinking positive thoughts...


----------



## Christine

dischick4778 said:


> I would have been thrilled to stay in the hospital, but they are not offering that as an option.  They did say for the first 24 hours to eat/drink normal but not over do it because that is when the radiation is strongest and they want it to work.  Then they said after the first 24 hours drink like A LOT in order to flush it out.  As far as eating, they told me to stay on LID until 24 hours after the pill then back to a normal diet plus the extra fluids.



I went back and read Dr. Ain's site today and this is exactly the recommendation about the fluids--wait 24 hours.  I then read some more and the posts just freaked me out so I stopped.  Going back to putting my head in the sand...


----------



## mrsklamc

Christine said:


> I went back and read Dr. Ain's site today and this is exactly the recommendation about the fluids--wait 24 hours.  I then read some more and the posts just freaked me out so I stopped.  Going back to putting my head in the sand...



Well please don't feel badly..I don't think you messed up anyone's treatment in the day or two that was posted,  and we certainly appreciate all your knowledge.

Bought lots of fresh fruits and veggies today, and baked some totally bland but LID-friendly bread. Got home only to realize I forgot the salt-free ketchup and the oats for the salt-free ketchup. Oh well, I still have tomorrow...

Christine, did you crash pretty immediately after stopping cytomel the last time you did a withdrawal scan? My last dose is Tuesday night and I am not planning to go to work Wednesday.


----------



## Christine

mrsklamc said:


> Well please don't feel badly..I don't think you messed up anyone's treatment in the day or two that was posted,  and we certainly appreciate all your knowledge.
> 
> Christine, did you crash pretty immediately after stopping cytomel the last time you did a withdrawal scan? My last dose is Tuesday night and I am not planning to go to work Wednesday.



I had to be off Cytomel for 8 days prior to scan.  I don't remember crashing right away.  I think it was around day 3 or 4.  

No, I wasn't too worried about messing up someone's treatment--I think I was agreeing that you should not push water or lemon drops at least right away.  It was good to read that Dr. Ain confirms that.  What freaked me out was some of the posts.  There was one person on there who was going through battling a recurrence.  They were originally diagnosed in 1985 and had a recurrence in...get this...2008!  Just when I thought I was safe.  

There were just a lot of posts about lifelong vigilence and it depressed the heck out of me.


----------



## dischick4778

Christine said:


> What freaked me out was some of the posts.  There was one person on there who was going through battling a recurrence.  They were originally diagnosed in 1985 and had a recurrence in...get this...2008!  Just when I thought I was safe.
> 
> There were just a lot of posts about lifelong vigilence and it depressed the heck out of me.



We can't think that way.  I was told there is a possibility of recurrence, but I won't walk around thinking that any day now it could be back.  We have to enjoy our lives and deal with situations as they arise.  That is why it is so important to keep following up and getting scanned as needed even if it is a hassle.


----------



## Christine

dischick4778 said:


> We can't think that way.  I was told there is a possibility of recurrence, but I won't walk around thinking that any day now it could be back.  We have to enjoy our lives and deal with situations as they arise.  That is why it is so important to keep following up and getting scanned as needed even if it is a hassle.




Well, I normally don't think that way--I'm usually pretty positive.  I hadn't read those "support" listservs in awhile.  Now, I know.  I think I'll stay away although they do keep me up-to-date with new developments.

As for the scanning hassle, that's what is part of what freaks me out.  I am no longer able to use Thyrogen due to a reaction and last month I tried to go off my meds and I had HORRIBLE anxiety (this didn't happen to me in my 30s).  So, I feel like I can't really do what I'm supposed to do.


----------



## MiceFan

Thank you for sharing your stories, I'm still working my way through the thread, it may take me a while. 
I had a thyroidectomy in November 2009 due to 4 benign (thank you Jesus!) tumors and I also had severe Hashimoto's Thyroiditis.  I'm doing great on 125 mcgs of Synthroid, slightly hyper, but *so* much better than last summer!  
My 8 y/o DD is having similar symptoms to mine (lots of anxiety and I think, panic attacks, constant hunger, of course, leading to weight gain) so I requested that her pediatrician test her thyroid.  We got the results last week that her TSH was 71.5, free T4 was 0.70.  My levels never got so crazy, it was just the antibodies that were odd and finally helped my docs figure my symptoms out.    
Her pediatrician doesn't seem to get the urgency of the situation, she's trying to get us in to see an endo, but right now, they are telling us not until November and the pedi isn't going to do anything in the mean time.  
I made my DD an appointment with my GP (he's a family doc) for later this week.  I'm sure he'll want to do more blood work (EEEK! I cannot begin to explain how badly she freaks out about needles) but hopefully he will get her started on Synthroid and give her some time to adjust before school starts next month.  I wish my DD didn't have to go through thyroid issues, but I am thankful that I had to deal with it first, hopefully I can advocate for her a little better.


----------



## mrsklamc

Christine said:


> As for the scanning hassle, that's what is part of what freaks me out.  I am no longer able to use Thyrogen due to a reaction and last month I tried to go off my meds and I had HORRIBLE anxiety (this didn't happen to me in my 30s).  So, I feel like I can't really do what I'm supposed to do.



I wouldn't describe it as horrible anxiety but I do feel like I'm about to step off a cliff. I think it makes it worse, too, that it doesn't seem like people around me understand. And of course, you can't understand if you haven't been through it but it's like they think you should be able to snap out of it or something.


----------



## luvmarypoppins

MiceFan - I hope your dd gets an appt. with the ped. endo so her problems can be addressed. I know my ped got my ds into the ped endo much faster instead of me calling myself for an appt. So dr. to dr. might help too. 

Christine - so I guess with the flush/no flush thing and what I asked and you commented before. We just have to do what our drs. tell us to do etc.
So I had to do the thyrogen/flush route etc. I do remember that I went into the hosp. at 8 pm so I dont think what I drank was more than too much normal. I really dont drink water that much at all, so maybe what seemed like alot was just a little over normal.    I know what you mean about the coming b ack stuff. I guess I never think about it until I go for another blood test, then I think about it. Also I had this "nice" lady at church tell me, oh yeah my sil had what you had and hers just came back after 20 years etc. Yeah thanks, just what I needed to hear. Oh she had to tell me very detail,. Its on her tongue and aorta. I said, oh what are they doing. She said -Nothingg!! And she goes to the premier cancer center in NYC!!So just live life each day. After almost dying, I have a whole different outlook now for sure. And thanks for always helping us with the info. You are the best.

Micayla - Hope the diet goes well for you. Just curious as to what you are using the ketchup for?? Like a mock barbeque sauce??

Micayla -


----------



## 6789

MiceFan said:


> Thank you for sharing your stories, I'm still working my way through the thread, it may take me a while.
> I had a thyroidectomy in November 2009 due to 4 benign (thank you Jesus!) tumors and I also had severe Hashimoto's Thyroiditis.  I'm doing great on 125 mcgs of Synthroid, slightly hyper, but *so* much better than last summer!
> My 8 y/o DD is having similar symptoms to mine (lots of anxiety and I think, panic attacks, constant hunger, of course, leading to weight gain) so I requested that her pediatrician test her thyroid.  We got the results last week that her TSH was 71.5, free T4 was 0.70.  My levels never got so crazy, it was just the antibodies that were odd and finally helped my docs figure my symptoms out.
> Her pediatrician doesn't seem to get the urgency of the situation, she's trying to get us in to see an endo, but right now, they are telling us not until November and the pedi isn't going to do anything in the mean time.
> I made my DD an appointment with my GP (he's a family doc) for later this week.  I'm sure he'll want to do more blood work (EEEK! I cannot begin to explain how badly she freaks out about needles) but hopefully he will get her started on Synthroid and give her some time to adjust before school starts next month.  I wish my DD didn't have to go through thyroid issues, but I am thankful that I had to deal with it first, hopefully I can advocate for her a little better.



I agree.  The doctors really need to get her started on synthroid.  Just a low dose to start to get her TSH lower and her numbers back in sync.  Remind the doctors how difficult it is for someone to concentrate when the thyroid is not working and with school starting it is necesssary to address this now.  Good luck!


----------



## MiceFan

Thanks luvmarypoppins and 6789!  I got a copy of the lab report this afternoon and saw that her lymphocytes were also above range.  I sent a message to my thyroid surgeon about it.  He's my favorite physician and one of my favorite people as well.  He referred to me as his favorite patient, so we'll see if that's just what he calls everyone or if I hear back soon.  
Thanks for the encouragement!


----------



## mrsklamc

luvmarypoppins said:


> Micayla - Hope the diet goes well for you. Just curious as to what you are using the ketchup for?? Like a mock barbeque sauce??



Nope, just as ketchup. DH makes me home made french fries.


----------



## mrsklamc

I took my last cytomel today. The good thing about going hypo last time, I think, was that I didn't know what I was getting into.


----------



## dischick4778

Had my radiation pill yesterday afternoon.  Feeling ok so far.  Mostly tired and having a hard time eating dry foods like bread and cookies.  But happy to be eating and drinking normal foods again.  I have some discomfort but not a lot.  Had a few lemon drops so far today.  Thanks again for all the support!!


----------



## mrsklamc

dischick4778 said:


> Had my radiation pill yesterday afternoon.  Feeling ok so far.  Mostly tired and having a hard time eating dry foods like bread and cookies.  But happy to be eating and drinking normal foods again.  I have some discomfort but not a lot.  Had a few lemon drops so far today.  Thanks again for all the support!!



I hope everything goes well for you. I hope this doesn't happen but I wanted to warn you about something I wasn't warned about (or didn't remember being warned about)....a week after the pill I lost all sense of taste. It came back after two or three weeks, I just wanted you to be prepared just in case. Like I said, hopefully not, but....


----------



## luvmarypoppins

dischick - glad you are hanging in there. I too had the dry swallowing poroblems. I still have them.  Npw my biggest problems are bread sometimes and french fries.I didnt have the taste bud sensation loss like Micayla, but I do remember spending an awful lot of time in the bathroom all week. Like every 1/2 hour after I ate I would be in the bathroom. What did you miss the most over the last 2 weeks did you eat now? My rad. onc. also told me stuff cpuld taste like metal but I didnt experience that. I know we are all different, so it will be interesting to read your eperience over the week too.

Micayala - I dont know how you feel, but I am sure its not fun. Wishing you all the best. You are blessed to have your dh cook for you. I cooked for the family the lst week and then it was too much torture for me the 2nd week, so since my dh was away at a conference I told them to order out, make your own lunch etc. It worked out better for me. I also didnt eat when they did. I didnt want to look at it etc. So do you have any meals planned etc?
In May I wanted to try a stuffed pepper, but I didnt do it. 

Also wondering if anyones endo ordered a bone density test. Mine wants me to have one. I dont know if its because of the cancer, just age related or vit d stuff etc. She gave me the script and I need to get it done soon.

I am thinking of writing a little pain journal before I go see the surgeon. Also they cancelled my visit for this tues. to aug. 10th but my wound is not draining too bad so that is good, its just the pain. Oh well. I have everyone praying for me, so that is helping for sure.


----------



## mrsklamc

I think osteoporosis is listed as a possible side effect of synthroid so we'll probably all get checked eventually. I'm very short so I was always high risk anyway- need to do some weight bearing excercise. 

I'm feeling pretty ok so far- not exhausted but just not quite me. 

So far I'm mostly eating fresh fruits and vegetables, and unsalted peanut butter and jelly, and DH will make lunch in foil in the evenings until I get sick of that. He made a spaghetti sauce last time that was pretty good, and I think I am going to make some granola this afternoon if I still have energy left. 

He or I will give a shot to frying eggplant, too- neither of us has ever had it.


----------



## dischick4778

Part of the problem is I'm Italian, so a lot of the foods I missed involve bread.  And it's just not working out for me yet.  Lol.  I tried to have some bread with sauce last night and a small piece of pizza today.  The taste is there, but the bread and pizza dough felt so dry.  Also, because of all the water I'm drinking to flush out the rad, I'm not really hungry.  But I start my synthroid tomorrow, so I'm looking forward to having more energy.

mrsklamc - you are very lucky to have your dh to help with cooking.  Luckily I had some energy throughout the prep process and was able to cook for myself.  My dh does not cook and I call him every day to make sure he has ordered food or eaten something for the day while he's home taking care of our son.  

Some good news to share ot - my little boy is 6 months old, weighs 15 lbs and is 27 inches long.  He had his Dr visit today which dad took him to and dh nearly cried when they gave the baby his shots.  I'm sorry I missed it but it made my dh feel really useful, so I'm glad he was able to have that experience since I usually take care of all that stuff.


----------



## mrsklamc

Dischick- I'm glad your DH got to have that experience too...wanted you guys to know if you use a stovetop popcorn popper with oil (ours is called a whirley pop) it tastes more like buttered popcorn.


----------



## luvmarypoppins

dischick - just wondering how you are doing? You are in the home stretch, hmm, I am having visions of Belmont raceway. (sorry, I have a weird sense of humor). I have never even been there, but only stuck in the traffic on race day once going to NJ. Hang in there.

Micayla - how goes the diet? I also had the idea of grilling myself a little shish ke bob type thing with the meat and veg etc. but that didnt work out. 

I am doing o.k. We will see what the surgeon says next week. In the meantime this upcoming week I will kill some time and go to the dentist, get the bone density test and throw in a mammogram whule I am at it. Next its the eye dr. appot. to make and my reg. dr. who I avoid like the plague.


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## mrsklamc

Diet is going ok. Today is the first day that I am craving something I can't have (day 5 of 17.) I am surprised I still feel so good; it must be the TSH that makes you feel so awful if the drugs are all gone by now? Kinda wish I hadn't taken off work so early.


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## dischick4778

luvmarypoppins - Thanks for checking in.  Synthroid is a wonder, didn't realize what I was missing until I started taking it.  LOL.  However, I want my taste and saliva back!  Eating is such a pain still.  Nothing tastes good, everything is dry, and not much agrees with my stomach.  How long does this last?!  After the LID I am ready for real food mentally, but everytime I eat I wish I hadn't.  Is the upset stomach more from the radiation or the adjustment back to normal foods after the LID?    Sounds like you are keeping yourself busy!  I do need a dentist visit myself, thanks for the reminder.


----------



## luvmarypoppins

dischick - I am glad the synthroid is helping. I think I started at like 150 or 175 but they uped it to 200. I am hyper to say the least and any little thing sets me off and makes me cry. My dh asked the endo to lower it, she said no as they like to keep the cancer patients high. So they must live with me, heah I gotta live with the cancer. 

Yeah I felt like you did all week and I always ran to the bathroom a little after I ate. I think it lasted about 10 days. I think the radiation does a number on your digestive system.    Even this May when I had just the tracer for the scan which was about 5 mci, somewhere around there. They said lst the pill then the next 2 days I had to take milk of magnesia. I said, why must I do this? They said we dont want any of the radiation remaining in your digestive system, then on the 3rd day I had the scan. I am glad so far next year all I have is the 2 thyrogen shots and the blood test.


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## mrsklamc

dischick4778 said:


> luvmarypoppins - Thanks for checking in.  Synthroid is a wonder, didn't realize what I was missing until I started taking it.  LOL.  However, I want my taste and saliva back!  Eating is such a pain still.  Nothing tastes good, everything is dry, and not much agrees with my stomach.  How long does this last?!  After the LID I am ready for real food mentally, but everytime I eat I wish I hadn't.  Is the upset stomach more from the radiation or the adjustment back to normal foods after the LID?    Sounds like you are keeping yourself busy!  I do need a dentist visit myself, thanks for the reminder.



I think the upset stomach is due to the radiation, because I was upset for a few days and I wasn't allowed to go back on a regular diet for a week. I lost my taste about that same day and it was gone for a couple of weeks. I'm so sorry you are dealing with this.


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## Christine

The upset stomach is called radiation gastritis (my nuclear physician told me this).  Effects the lining of your stomach.  I have a sensitive stomach anyway.  I was VERY nauseous after my large doses.  I find the tracer dose and a 30 mci dose did not affect me though.

My doc had me take Gaviscon four times a day and a Pepcid in the morning and in the evening.  That seemed to help until it healed on its own.


----------



## dischick4778

Ugh, why must we endure these things. Isn't having the cancer bad enough not to need all these side effects on top of it?  Thanks for letting me know I'm not alone in it though,  it's good to hear others have had similar experiences and that it does get better.

Going for scan tomorrow.  Will keep you updated.


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## mrsklamc

I just googled 'iodine test strips' and got a ton of hits on google. I wonder why we can't just use these on foods like milk? I'm not going to but it really makes me wonder...


----------



## Christine

The other day I was reading an article about cancer in a magazine.  It said that all forms of cancer had dropped with the exception of one--thyroid cancer--which was on the rise at 37,000 cases diagnosed per year.

I wonder how long it will take them to figure out what is causing the escalation of new cases.


----------



## mrsklamc

I don't know. I've sure put a lot of thought into mine and come up blank; well, blank other than some crazy theories. I know my grandma was hyperthyroid and had a dose to lower that, and it would have been like her to ignore the precautions. I have no idea when she had it done though.  My mother used to tell me as a kid not to stand in front of the microwave or I would get cancer. My husband says that's insane. I used to go to my grandparents' house in the summer which was near a military outpost and in my wildest imaginings I've wondered if they had something going on there. 
My endo says at one point they tracked a rash of cases to radioactive material being scattered over pastures in the midwest, and many people who drank milk from those cows got thyroid cancer. I've wondered many times how they could track something like that down so specifically.


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## mrsklamc

I kinda can't believe how good I feel. This is day 6 off cytomel...I've been trailing off in the middle of sentences sometimes or forgetting what I'm doing while I'm doing it, but overall pretty good. Not going to work though because I don't trust myself not to forget what I'm supposed to be doing while driving!


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## dischick4778

Got a good report at hospital today.  Scan showed nothing new from pre radiation scan.  Hospital Dr said follow up with your endo in 2-3 months and we'll see you in a year for follow up scan.  Yay.  I am going home to my husband and son tomorrow.  Can't wait!!


----------



## Christine

dischick4778 said:


> Got a good report at hospital today.  Scan showed nothing new from pre radiation scan.  Hospital Dr said follow up with your endo in 2-3 months and we'll see you in a year for follow up scan.  Yay.  I am going home to my husband and son tomorrow.  Can't wait!!



Hurray!!!!  That's great news.  I bet you feel fabulous!


----------



## luvmarypoppins

dischick4778 said:


> Got a good report at hospital today.  Scan showed nothing new from pre radiation scan.  Hospital Dr said follow up with your endo in 2-3 months and we'll see you in a year for follow up scan.  Yay.  I am going home to my husband and son tomorrow.  Can't wait!!



Great news! So happy for you, now go and celebrate


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## luvmarypoppins

Christine said:


> The other day I was reading an article about cancer in a magazine.  It said that all forms of cancer had dropped with the exception of one--thyroid cancer--which was on the rise at 37,000 cases diagnosed per year.
> 
> I wonder how long it will take them to figure out what is causing the escalation of new cases.



I had this same experience before my surgery. I had to go get a pulmonary function test as they thought the cancer was affecting my lungs. (It was only the trachea). They said we have seen so many thyroid cases lately, wonder why? I do know around here there was alot of farming but doubt they used chemicals etc.


----------



## mrsklamc

Dischick- congratulations!!!! It feels so good to be 'done!' 

luvmarypoppins- my endo seems to feel that it's radioactive material of some sort that causes it and they just don't know exactly where it's coming from; though I have an aunt that doesn't have hers because of non cancerous tumors so who knows?


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## luvmarypoppins

mrsklamc said:


> I don't know. I've sure put a lot of thought into mine and come up blank; well, blank other than some crazy theories. I know my grandma was hyperthyroid and had a dose to lower that, and it would have been like her to ignore the precautions. I have no idea when she had it done though.  My mother used to tell me as a kid not to stand in front of the microwave or I would get cancer. My husband says that's insane. I used to go to my grandparents' house in the summer which was near a military outpost and in my wildest imaginings I've wondered if they had something going on there.
> My endo says at one point they tracked a rash of cases to radioactive material being scattered over pastures in the midwest, and many people who drank milk from those cows got thyroid cancer. I've wondered many times how they could track something like that down so specifically.



I think mine was a combination of alot of things. Some enviornmental, some genetic. Bad genes run in my family 

1.The enviornmental stuff I only told them about the tons of xrays I had when I had scoliosis. They said, that shouldnt be a problem. (Um, I think it was) and

2. didnt tell them but when I was growing up we had well water, dont know where the source was actually from but not too far from our house was an abandoned drug company place, that I am thinking they dumped stuff in the ground etc. and I might have been drinking all that stuff until we had city water

3. Heard of one of my aunts having thyroid stuff (cant ask as anyone who remembers has passed

So who else has any "theories". Just curious to see if there is any common thread?


----------



## Christine

luvmarypoppins said:


> So who else has any "theories". Just curious to see if there is any common thread?




I do think it's environmental.  But I just can't imagine what it could be.  I was told that thyroid cancer takes approximately 20 years to develop so if I was diagnosed at 31, it was more than likely something that happened in my teens.

And I can't think of ONE thing.

I lived in a normal neighborhood outside of DC.  Nothing special.  No special med treatments, nothing.  

When I was 19, I lived in an area that had some nuclear weapons are PCBs.  I also lived in Japan in my early 20s, near the northern most island and there were talks that stuff was going on there.  But, who knows.  And as far as I know, if there were stuff going on, we'd get clusters.  But I was told by a doctor (who probably really doesn't know) that thyroid cancer is so latent that whatever happened to me in my 20s wasn't causing an age-30 diagnosis, if that makes sense...


----------



## KAMLEM

I have been wondering about the cause of my thyroid cancer a lot lately, too. I lived in a neighborhood that had a little creek that ran under the street. It came between 2 homes, ran under the street, and came back up between the 2 homes on the other side of the street. We used to play in it when we were little, even crawling through the tunnels that went under the street (I know, gross). 

What scares me is that six people from the four houses next to the creek have passed away. Three of them had cancer and died between the ages of 50 and 60. One of them had a heart related disease and the other two moved away and I'm not sure how they died but they were young, in their forties. It may just be coincidence but I really wonder if something may have been in this creek.


----------



## mrsklamc

DH bought a deep fryer today and hand cut french fries, and stirred salt into the salt free ketchup. It tasted heavenly.


----------



## ElizK

I have a question for you. I posted about 6-7 weeks ago about my TSH taking a dive (from 4.6 in Sep to 10.3 in Jun).  Medication was adjusted, feeling a bit better.  Not quite so sluggish.

Here's my question: I've been having these random sore throats that feel like I'm swallowing sand.  Very scratchy and painful.  I tried to kind of feel around to tell where in my throat the pain is, and it does seem to be right at or just above my thyroid.  There is no pain from the outside, just when I swallow.  And it's not all the time.  Is this the kind of sore throat that is typically associated with thyroid problems?  I know that I was asked several times about sore throats when I was first being diagnosed. 

 I have a lot of allergies, but I know what sinus drainage feels like, and this isn't it.  

Thanks for your help!


----------



## Christine

ElizK said:


> I have a question for you. I posted about 6-7 weeks ago about my TSH taking a dive (from 4.6 in Sep to 10.3 in Jun).  Medication was adjusted, feeling a bit better.  Not quite so sluggish.
> 
> Here's my question: I've been having these random sore throats that feel like I'm swallowing sand.  Very scratchy and painful.  I tried to kind of feel around to tell where in my throat the pain is, and it does seem to be right at or just above my thyroid.  There is no pain from the outside, just when I swallow.  And it's not all the time.  Is this the kind of sore throat that is typically associated with thyroid problems?  I know that I was asked several times about sore throats when I was first being diagnosed.
> 
> I have a lot of allergies, but I know what sinus drainage feels like, and this isn't it.
> 
> Thanks for your help!



Hmmm...I just don't know.

I never really had any thyroid problems--just thyroid cancer that had a lump.  It never gave me a sore throat.

I remember, way back then, reading about thyroid problems, Hashimotos, and thyroid inflammation.  I think when your thyroid is inflamed, you can get a sore throat.  I don't think hypothyroidism causes it.  You can also get a sore throat if you have a lump and the lump is pressing on things.

The only other thing that I might think is that you could have acid reflux (silent).  Being hypothyroid will definitely cause that because your LES in your lower esophagus will relax.  If you are refluxing at night, you can get burning in your throat periodically.  I have reflux (GERD) and sometimes, on a particular bad spell, I will get the burning sensations in my throat.  It's not like a true sore throat but more like it's irritated.


----------



## mrsklamc

I'm kinda feeling like a dolt here but I hope you guys can help me out who have been on the LID.

If I'm reading it right (the instructions in the thyca cookbook) it says anything that says kosher is ok as long as it doesn't also say iodized salt? I'm asking specifically about pickles- if the pickles are kosher, and the label says salt, does that mean it's not iodized salt unless it says so? 

I'm also not sure about pepsi, dr.pepper, etc. It says colas are ok, as long as they don't have red #3 ( I think.) I think it's saying carmel colored sodas are ok as long as they don't have red #3...but carmel color in and of itself, surely doesn't actually come from carmel does it?  (therefore dairy?)

I'm hoping either someone has better reading skills than I do this morning or has been told one way or another by their doc on this.

Thanks!


----------



## luvmarypoppins

Micayla - I dont know about the pickles, but I wouldnt take a chance with them. 

As far as the soda, I was told as long as it didnt have the dye in it, but I didnt want to take a chance no matter what, so I just did clear like sierra mist, sprite etc.


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## mrsklamc

luvmarypoppins said:


> Micayla - I dont know about the pickles, but I wouldnt take a chance with them.
> 
> As far as the soda, I was told as long as it didnt have the dye in it, but I didnt want to take a chance no matter what, so I just did clear like sierra mist, sprite etc.



That's exactly what I've been doing (sprite, etc)...I was hoping maybe your nutritionist had told you differently. Only 9 days to go! (I'm not counting Friday cause the scan is in the AM)


----------



## mrsklamc

Hmmm....any article about pickles says that you MUST NOT use iodized salt because the iodine will cloud up the water. Probably still best not to risk it but that sounds so yummy right now.


----------



## Christine

My memory is fuzzy on the sodas but I think, yes, every soda is fine as long as it doesn't have the red dye (cherry sodas, birch beer are probably out).  I remember drinking Pepsi.  It was one of my few treats.


----------



## luvmarypoppins

Hang in there Micayla!! 

Well when I went for the mammo and bone density test today, I had the mammo first. I told the girl I couldnt move my arm up to the machine etc. becaue of the cancer. She asked me what kind. I told her thyroid. Get this- she says -
"wow we are getting alot of that here lately, wonder why?

O.K. visions of my questions about finding a "Common thread" from yest. came into my mind. I though yes, lady that is the $100 million dollar question!!

She sad my bone density was a little low and commented about the high synthroid dose. I guess I will have to wait for the endo to call and discuss things with me. I know she said before there was no way she was lowering the synthroid yet. I am wondering if that is because of the columnar cell stuff too?


----------



## dischick4778

Thanks so much for the congrats and support!  I have been enjoying my reunion with my boys and truly loving every moment.  My only concern is I still can't taste anything.  I don't know what to eat, everything tastes so bland I don't want to eat at all.  Hope this goes away soon.  I know its different for everyone, but how long does this usually last?

When I originally found out I had thyroid cancer and I asked where it came from and how long I had it the Dr told me I could have had it for years and never realized it.  He said its hereditary and I do know of a few older family members who had it.  He also said my pregnancy could have brought it out or made it worse.


----------



## mrsklamc

My lack of taste lasted about 3 weeks.


----------



## luvmarypoppins

I also thought I heard/read this somewhere. I dont know if it was to cut down on the metallic taste etc. Maybe someone sent it to me?

It said something about putting pickle juice on stuff. It does something to take the metallic taste away (which I never got) but I dont know if it would help the bland taste. I dont even know if they mean sweet pickle juice or dill pickle juice etc.   Oh wel..maybe you could try just a little bit.

Wishing you all the best dizchick.

Also it was very interesting that your dr. said your cancer was heriditary. I asked my surgeon why I got it etc. and he says "Oh you just had some bad luck!". Hmm, because they were also testing me for medullary thyroid cancer twice, based on my family history. But that was negative, Praise God!!

Micayla - a week to go girl, Hang in there!! I remember I bought myself those little packs of raisins and crasins, so when I wanted a snack I could feel "special" too. Helped if I was around other people etc. I took them to a meeting once and started snacking. I was really hungry anyway.


----------



## mrsklamc

luvmarypoppins said:


> Micayla - a week to go girl, Hang in there!! I remember I bought myself those little packs of raisins and crasins, so when I wanted a snack I could feel "special" too. Helped if I was around other people etc. I took them to a meeting once and started snacking. I was really hungry anyway.



Thanks! This is NOTHING like last time. I am a little extra tired, but nothing a few extra naps can't handle; just a little fuzzy around the edges. I have almost even been worried my TSH won't be high enough, I feel so good. 

I think they let me go too long (7 weeks) last time, but hopefully it means that remaining tissue was extra avid, right?


----------



## WDWBarb

ElizK said:


> I have a question for you. I posted about 6-7 weeks ago about my TSH taking a dive (from 4.6 in Sep to 10.3 in Jun).  Medication was adjusted, feeling a bit better.  Not quite so sluggish.
> 
> Here's my question: I've been having these random sore throats that feel like I'm swallowing sand.  Very scratchy and painful.  I tried to kind of feel around to tell where in my throat the pain is, and it does seem to be right at or just above my thyroid.  There is no pain from the outside, just when I swallow.  And it's not all the time.  Is this the kind of sore throat that is typically associated with thyroid problems?  I know that I was asked several times about sore throats when I was first being diagnosed.
> 
> I have a lot of allergies, but I know what sinus drainage feels like, and this isn't it.
> 
> Thanks for your help!



DD has Hashimoto's and a small goiter (her thyroid is 2x a normal size).  She experiences a feeling of her throat being constricted, but nothing painful.  I suppose it's possible, but something to definately talk to your doctor about.


----------



## mrsklamc

For those that do the LID- I just read last night that red #3 has been illegal for most uses in the US since 1990 because at high doses it caused thyroid cancer in lab rats. I find that interesting because that means it WAS in use around the time my cancer started growing, and guess what my favorite flavor of candy always was? The red ones- cherry, strawberry, watermelon, etc.


----------



## Christine

mrsklamc said:


> For those that do the LID- I just read last night that red #3 has been illegal for most uses in the US since 1990 because at high doses it caused thyroid cancer in lab rats. I find that interesting because that means it WAS in use around the time my cancer started growing, and guess what my favorite flavor of candy always was? The red ones- cherry, strawberry, watermelon, etc.



Me too!  I used to LOVE picking out the red M&Ms.  Then they pulled them off the market.  I remember there were no red M&Ms for awhile.  Now we do have them, obviously, using the *better* red dye.  As a kid, though, I alwasy went for the red Kool-Aid, the red slurpee, the red popsicle--you get the picture...


----------



## luvmarypoppins

O.K. I guess I drank way too many cups of red hawaiian punch and kool aid


----------



## mrsklamc

I guess it seems a little strange to me that when the LID cookbook says to watch out for it, that it doesn't mention that it's been off the market for 'most 'uses since 1990.  But I guess you still have to look for it since I don't know what uses it might still be used for.

DH wants to order iodine test strips for the next time I have to do this. I emailed thyca about the pickle issue and she suggested the recipe from the cookbook (ironically she's the contributer of the pickle recipe) and she mentioned that she 'didn't have any store bought pickles here to test.' So he thinks next time we should just buy pickles and dairy products and test them ourselves. I've tried convincing him it's overkill because I mostly do fine. The only things that were hard this time were pickles and cheese, and now the cravings are mostly gone. Plus, I can experiment with getting the dill pickle taste right for next time. Just 4 days to go!


----------



## luvmarypoppins

Thats great that you got to call them Micayla. Hang in there.  4,3,2,1!!

I told you after this scan I spent about 2 days in the bathroom. I hope you dont have the same reaction, but am wondering since es said she did too.

So do you know or are you just thinking you will have to do the diet again next year. I am so happy my rad. onc. told me I am only doing the 2 thyrogen shots and then blood tests, so that will only be 3 days visiting the hospital and I know my dh will go as he loves the food there. Go figure.

Say a prayer, I am going to the stomach surgeon tomm. I hope he gives me some good news. and not the "S" word.


----------



## mrsklamc

I don't know if I have to do it next year. I guess I was thinking you had to do the LID even with thyrogen?I don't know, I haven't talked to my doctor about it yet, other than in two months we get to start trying to conceive again so assuming that works out we'd look at scanning again about 2 months after the baby...

I hope no surgery for you!!!

I had forgotten about nausea after the scan, I guess I was hoping with this 'tracer' dose it wouldn't be like that. Drat!


----------



## luvmarypoppins

!

I had forgotten about nausea after the scan, I guess I was hoping with this 'tracer' dose it wouldn't be like that. Drat![/QUOTE]

No. it was more from the other side of things for the both of us.


----------



## Christine

mrsklamc said:


> I don't know if I have to do it next year. I guess I was thinking you had to do the LID even with thyrogen?!



You only do the LID if you are having a scan (tracer dose).  If you are just doing the Thyrogen and bloodwork you don't have to do the LID.


----------



## mrsklamc

Christine said:


> You only do the LID if you are having a scan (tracer dose).  If you are just doing the Thyrogen and bloodwork you don't have to do the LID.



Oh good! And I went back a few pages and read that your tracer dose didn't seem to bother you so hopefully....

I'll let you know. My appointment to take the pill is tomorrow morning and then my scan is Friday morning...then assuming I feel well I am eating every dairy product in sight! I have kinda lost my appetite for all my LID friendly foods. Just bored with it all. Not especially hungry either though so I guess it works out.


----------



## dischick4778

luvmarypoppins - good luck with your surgeon tomorrow!  fingers crossed for positive news.

mrsklamc - best of luck with your scan!


----------



## mrsklamc

dischick4778 said:


> mrsklamc - best of luck with your scan!



Thank you. I took the tracer dose this morning and so far no adverse reaction. Drinking lots of water and being bored. Can't sleep, tired of reading, watching tv, listening to audiobooks, etc. Want to be 'me' again. 

I hope your recovery continues to go well. 

They told me this morning I won't automatically be going off the diet on Friday and going on my meds, because if they want to give me another treatment dose I'm all prepared for it. I was very bummed; I had thought that if there was any tissue left it would be in lymph nodes and my endo had mentioned having alcohol injected directly into the nodes but not another treatment dose so I had figured there would be no reason to stay on it. If I can't get off this diet it's going to be a LONG weekend.


----------



## luvmarypoppins

Micayla - glad you made it through the tracer. What precautions did they give you? Dh was not suppose to sleep with me, good he was at a conference anyway.   So you have to drink alot of water? I told you I had to take the mom for 2 days. 

Also I know it sounds crazy about the diet but I also asked my rad. onc. Her plan was to tell me the scan results right away, but they told me just because that was o.k. it didnt mean the blood test would be o.k. and the blood test is more accurate. My scan number was 1.0. She likes it at 0.5 but said even up to 4.0 is o.k. for her. 

I also asked her what if the blood tet was positive because I told her I was already going to disney world etc. She told me if the blood test was positive then I would have to do the whole diet all over again, so I guess its better for them to be sure etc. Also since its a little earlier than the 1 year mark too etc. 

Also I told you es and I both had diarrhea for 2 days after the scan. As soon as we ate we were running to the bathroom, so stay close to home

dischick - I dont know if you mind sharing, but I was just wondering how many lymph nodes you had out and how many were positive, especially since you have a rare variant like me too!!

Oh and on a side note about me and the surgeon today... He is now going to try an antibiotic for 2 weeks, then the 3rd week he will be on vacation, so I cant go back to sept. 7th. If nothing has changed he will do some surgery. So far just a day thing, but we will talk more in sept. I have a feeling it might be worse than he thinks. It usually always is with me. The other surgeon said "you are full of surprises", yeah I know that. Ok I feel like a bad movie sequel, summer of the draining wound II, 2010 . For all those who thought 2009 wasnt enough for you. (I told you I have a strange sense of humor) I also told the surgeon this. He did not laugh. he never does. He is so serious all the time.

Wishing you all the best.


----------



## mrsklamc

luvmarypoppins said:


> Micayla - glad you made it through the tracer. What precautions did they give you? Dh was not suppose to sleep with me, good he was at a conference anyway.   So you have to drink alot of water? I told you I had to take the mom for 2 days.
> 
> Also I know it sounds crazy about the diet but I also asked my rad. onc. Her plan was to tell me the scan results right away, but they told me just because that was o.k. it didnt mean the blood test would be o.k. and the blood test is more accurate. My scan number was 1.0. She likes it at 0.5 but said even up to 4.0 is o.k. for her.
> 
> I also asked her what if the blood tet was positive because I told her I was already going to disney world etc. She told me if the blood test was positive then I would have to do the whole diet all over again, so I guess its better for them to be sure etc. Also since its a little earlier than the 1 year mark too etc.
> 
> Also I told you es and I both had diarrhea for 2 days after the scan. As soon as we ate we were running to the bathroom, so stay close to home
> 
> dischick - I dont know if you mind sharing, but I was just wondering how many lymph nodes you had out and how many were positive, especially since you have a rare variant like me too!!
> 
> Oh and on a side note about me and the surgeon today... He is now going to try an antibiotic for 2 weeks, then the 3rd week he will be on vacation, so I cant go back to sept. 7th. If nothing has changed he will do some surgery. So far just a day thing, but we will talk more in sept. I have a feeling it might be worse than he thinks. It usually always is with me. The other surgeon said "you are full of surprises", yeah I know that. Ok I feel like a bad movie sequel, summer of the draining wound II, 2010 . For all those who thought 2009 wasnt enough for you. (I told you I have a strange sense of humor) I also told the surgeon this. He did not laugh. he never does. He is so serious all the time.
> 
> Wishing you all the best.



They were very lax about the precautions this time since we don't have kids; Not closer than 4 feet for more than 6 hours and use a separate bathroom if possible. DH said 'so no sleeping in the same bed?' She said 'Depends how long you want to sleep.'

They said drink lots of water and suck on lemon drops or other hard candy. They didn't offer any info on MOM so I asked cause I don't want there to be any doubt on the scan if possible.

I didn't know the blood test was considered more accurate than the scan? I do know my result from Friday was <1, so that gives me hope that the scan will be clean.

Praying something goes right for you for once!!! Eventually something has to go the right way right?


----------



## mrsklamc

Oh on the <1 score, the last time my endo's office said that <1 was good but they preferred undetectable; I mentioned that to the nuclear med person and she said she doesn't think the report she gets ever says anything below <1.


----------



## luvmarypoppins

I forgot to mention this...last week I was waiting at the dentist office and I was reading either family circle, womans day or bhg, I cant remember, but on the last page was an interview with Catherine Bell. She said something like.....since I was dignosed with thyroid cancer at age 21, I have learned to appreciate life and live each day to the fullest. Dont quote me on it but something like that.   

I thought that was very positive and encouraging.


----------



## dischick4778

luvmarypoppins said:


> dischick - I dont know if you mind sharing, but I was just wondering how many lymph nodes you had out and how many were positive, especially since you have a rare variant like me too!!



I wasn't sure but just found my report.  From the central compartment it says multiple lymph nodes positive.  Then from the right side it says they took out 14 lymph nodes of which 4 were positive.  The Dr told me they literally took out everything they could.  And the tumor was wrapped around my vocal cords so he had to get special permission from my husband during the surgery to take this out because there was a risk I wouldn't be able to speak.  I still don't have my voice back fully, but it is fine in my mind.  

mrsklamc - Good luck with your scan tomorrow!


----------



## mrsklamc

Nuclear med Dr. says I am CLEAR!!!!!!!! I am so excited...but a little confused. The technician on Tuesday said they would NOT be able to tell me to stop taking my meds and go off the diet before I left today, that I would have to wait to hear from my endo. But then, the tech today told me exactly that. I am trying to be patient and wait to hear from the endo's office but it is so hard. Surely they wouldn't have risked the liability of telling me that if they weren't sure?


----------



## luvmarypoppins

Micayla - I am so happy for you too. That is great news. I hope the endo lets you go off the diet. I am surprised they told you the results too. Here after the scan I just went to the rad. onc. (in the same hosp) and she told me the results.  Did you have a blood test too today? I suppose my stuff was different with the thyrogen,

dischick - I guess the columnar cell and tall cell are similar with the agressiveness. I was told that there was a possibility that I would wake up with a trach tube depending on what he found. I didnt want to say before but I almost died during my surgery. Well surgeon #1 operated for 6 hours. Talked to my dh and the 3 ds and then was paged and operated on me another 2 hrs for post op bleeding. He never found the source he said later on. Then at 4 am my neck turned into a watermelon dh said. He was pushing my bed into the elevator and surgeon #2 operated on me for 3 hours. They just hired him from Westchester and he couldnt even find the operating rooms. He said my jugular vein burst and I needed 7 pints of blood and was put in an induced coma for 2 days. They told me that the voice you have at 18 months will basically be it. My r vocal cord was bruised during the surgery. I have had alot of scopes and did the strobe test in january. They cant find anything wrong but my voice gets weak and gives out sometimes but I did with it. Its usually after 8 pm if I am talking alot during the day. Sugeon #2 is a voice specialist so that is good for me. They can scope you again and compare the vocal cord stuff from before to see if there is improvement, no change etc.  Wishing you all the best with the voice too.


----------



## ElizK

I can't thank you enough for the information ya'll have been able to give me. I'd like to pick your brains again, if you don't mind.

 Last time I posted I mentioned the random sore throats.  Still doing that, but since last week it feels like I have a big lump in my throat.  My thyroid is definitely enlarged.  Sometimes it is more uncomfortable than other times. I'm having my follow-up blood work done today, so I'll find out if my dose adjustment was enough.. 

I don't even know what I'm asking... maybe I just need a pat on the head?  I can't find anything about any of this that would send me running for the doctor's office. I can't feel any new nodules, overall I feel about the same.   Any words of wisdom for me?


----------



## mrsklamc

Eliza- I would definitely call your dr.

My end's assistant called back and said I could stop the diet because the scan was normal but wait on the mess as not all my bloodwork was back? Not sure how that could be since there were only 4 things on the bloodwork order and they had those all before the scan. Weird.


----------



## Christine

ElizK said:


> I can't thank you enough for the information ya'll have been able to give me. I'd like to pick your brains again, if you don't mind.
> 
> Last time I posted I mentioned the random sore throats.  Still doing that, but since last week it feels like I have a big lump in my throat.  My thyroid is definitely enlarged.  Sometimes it is more uncomfortable than other times. I'm having my follow-up blood work done today, so I'll find out if my dose adjustment was enough..
> 
> I don't even know what I'm asking... maybe I just need a pat on the head?  I can't find anything about any of this that would send me running for the doctor's office. I can't feel any new nodules, overall I feel about the same.   Any words of wisdom for me?



ElizK--

Have you had a thyroid scan yet to measure your thyroid and to see if you have nodules?  Or an ultrasound?


----------



## Christine

Micayla,

Congrats on the clean scan.  

Hmmmm...if you've had your thyroglobulin test back already, I can't imagine what they are waiting for.

My old endo always gave the nuclear doctor 'permission' to give me the results.  That was nice.  I could always go back on meds, eat what I wanted once I heard from them.

I just wonder what the hold up is for you.


----------



## mrsklamc

Christine said:


> Micayla,
> 
> Congrats on the clean scan.
> 
> Hmmmm...if you've had your thyroglobulin test back already, I can't imagine what they are waiting for.
> 
> My old endo always gave the nuclear doctor 'permission' to give me the results.  That was nice.  I could always go back on meds, eat what I wanted once I heard from them.
> 
> I just wonder what the hold up is for you.



Yeah I find that so bizarre. I wonder if she didn't have the results right on the top of the  chart and forgot she had them already? So weird.


----------



## ElizK

Christine said:


> ElizK--
> 
> Have you had a thyroid scan yet to measure your thyroid and to see if you have nodules?  Or an ultrasound?



I have an ultrasound each year to watch a tiny nodule.  This last scan (I think it was in Dec) showed that it was actually smaller than the year before.  Doctor told me when it was first discovered that it was too small to biopsy, and we'd watch it. 

I had follow-up lab work done today, so the dr's office will be calling me probably on Tues.  I'll talk to the nurse about the problems I'm having then. 

I have a high-deductible insurance for the first time this year... sure makes me think twice about making a dr's appt when the cost is coming out of my pocket.


----------



## Christine

ElizK said:


> I have an ultrasound each year to watch a tiny nodule.  This last scan (I think it was in Dec) showed that it was actually smaller than the year before.  Doctor told me when it was first discovered that it was too small to biopsy, and we'd watch it.
> 
> I had follow-up lab work done today, so the dr's office will be calling me probably on Tues.  I'll talk to the nurse about the problems I'm having then.
> 
> I have a high-deductible insurance for the first time this year... sure makes me think twice about making a dr's appt when the cost is coming out of my pocket.



Oh, good, then someone is watching it.  If you are having those sensations of fullness you should probably let them know and they can zip you in for an ultrasound.  Either the nodule has decided to grow or, I suppose, it could be something like thyroiditis which could mean the thyroid is inflamed.  That might happen in a case of hashimotos or something.  Otherwise, it could be totally unrelated.  When my GERD was undiagnosed and untreated, I felt like I had a horrible lump in my throat.  It really scared me because I had recently been treated for thyroid cancer and I was convinced I was having a recurrence.  I went to an ENT who scoped me from my nose down into my vocal chords and didn't see a thing.  It was a terrible feeling.  Then they kept telling me it was sinus drainage (which was part of it) and/or anxiety.  Now if I miss my Prilosec for any length of time, that sensation comes back.  Oh, and I got it REALLY bad 2 months ago when I went off my thyroid meds for 6 days.  Not sure what happened there, but I actually felt like my throat was closing up.  That probably *was* anxiety because I was certainly feeling anxious.


----------



## mrsklamc

Christine said:


> Micayla,
> 
> Congrats on the clean scan.
> 
> Hmmmm...if you've had your thyroglobulin test back already, I can't imagine what they are waiting for.
> 
> My old endo always gave the nuclear doctor 'permission' to give me the results.  That was nice.  I could always go back on meds, eat what I wanted once I heard from them.
> 
> I just wonder what the hold up is for you.



I think I have a clue now. My GP dr. sends me a copy of my labs and I just received them in the mail- no thyroglobulin number on them anywhere. So that must be what they are waiting for. The only thing that doesn't make sense is that when I went in for the tracer dose, the paperwork they showed me clearly had a <1 for thyroglobulin. I wonder if that was just a mistake or a filler since they didn't really need that info for the scan. 

Something I found online last night is that many labs aren't equipped to do thyrogobulin in house because it's not a standard test so it has to be 'sent out,' so that must be the holdup.


----------



## Christine

mrsklamc said:


> I think I have a clue now. My GP dr. sends me a copy of my labs and I just received them in the mail- no thyroglobulin number on them anywhere. So that must be what they are waiting for. The only thing that doesn't make sense is that when I went in for the tracer dose, the paperwork they showed me clearly had a <1 for thyroglobulin. I wonder if that was just a mistake or a filler since they didn't really need that info for the scan.
> 
> Something I found online last night is that many labs aren't equipped to do thyrogobulin in house because it's not a standard test so it has to be 'sent out,' so that must be the holdup.



Yes, there are only a few labs that do thyroglobulin so when your bloodwork goes out, the thyroglobulin tubes go somewhere else.  I had all my bloodwork done in Virginia but the thyroglobulin was always sent out to the Mayo clinic.  On my last set of labs back in July, I was very confused because my thyroglobulin came back in 2 days.  So, I'm thinking that my lab is now doing it in house.

So, who ordered your Tg test?  Your GP or the hospital.  When my hospital did it (when I was having scans) the TSH and Tg were reported electronically so when the tech pulled up my record at the scan, the results were there even though the paperwork had not reached my doctor.  And doctors don't have the computer access to the hospital's in house blood records.  So I'm wondering if you had your tests done at the hospital?  Maybe that is why they had your TG results?


----------



## luvmarypoppins

ElizK - hope the labs might shed some light on your problem. Wishing you all the best.

Micayla - so happy that you are off the diet, now go eats lots of dairy!! hmm, cheese please? Ice cream 

Looks like the cipro might be working for me. I guess the real test will be after its done and I have to wait for the surgeon to get back from vacation, if things start to head south again, then I know I will almost certainly be having the surgery.


----------



## mrsklamc

Christine said:


> Yes, there are only a few labs that do thyroglobulin so when your bloodwork goes out, the thyroglobulin tubes go somewhere else.  I had all my bloodwork done in Virginia but the thyroglobulin was always sent out to the Mayo clinic.  On my last set of labs back in July, I was very confused because my thyroglobulin came back in 2 days.  So, I'm thinking that my lab is now doing it in house.
> 
> So, who ordered your Tg test?  Your GP or the hospital.  When my hospital did it (when I was having scans) the TSH and Tg were reported electronically so when the tech pulled up my record at the scan, the results were there even though the paperwork had not reached my doctor.  And doctors don't have the computer access to the hospital's in house blood records.  So I'm wondering if you had your tests done at the hospital?  Maybe that is why they had your TG results?



Well...my endo's office is attached to a hospital system and that's where I would prefer to have my labs done...except if I DO that, the silly insurance bills me for being ADMITTED to the hospital. ($150 instead of free.)  So I do it at my GP's lab, which makes it difficult because then the GP's nurse has to remember to send them to the endo... and the nuclear med place is yet another facility, so maybe the GP's office sent them directly to the nuclear med place...I dunno. I am going to call my GP's nurse in the morning, hopefully the thyroglobulin came in separately and she just didn't get it called in right away.


----------



## luvmarypoppins

Micayla - hope you get the results soon. I know the ins. sometimes gets crazy. I have learned how the "system" of mine works depending on the situation etc.

Just wondering if you lost any weight on the lid this time? I am sure by now I have gained all the 10 lbs. back that I lost.


----------



## mrsklamc

No, I didn't lose any, at all. I think it's because my LID diet is fairly carb-heavy, and I also have PCOS, which is related to insulin resistance, which means I (hopefully) will do better on a protein heavy diet. I was hoping to start South Beach tomorrow but I think starting a diet when I'm not taking any meds is setting myself up to fail, so hopefully I can get this straightened out first thing tomorrow.


----------



## mrsklamc

So I called my regular doctor's office first thing this morning, only to wait until 2:30 for the lab to finally call and fess up that they accidentally ordered for thyrogobulin antibodies rather than thyrogobulin. I went right away to have blood drawn again and then called my endo's office to see if I could go back on my synthroid. They are going to call back and let me know.

I just have no idea what happens if the thyrogobulin doesn't come back the way they want it to; if it's high that means I have cancer still but they don't know where right? So what then?


----------



## Christine

mrsklamc said:


> I just have no idea what happens if the thyrogobulin doesn't come back the way they want it to; if it's high that means I have cancer still but they don't know where right? So what then?




An elevated thyroglobulin with a clean scan means that you possibly have RAI resistant thyroid cancer.  It means that it is probably still in the neck but not taking up RAI so it can't be seen.  Often times, it is functioning less than regular thyroid tissue so the tracer dose might be too low to see it and they will often see it with the ablative dose.

More than likely this is not the case but it is one scenario.


----------



## mrsklamc

Christine said:


> An elevated thyroglobulin with a clean scan means that you possibly have RAI resistant thyroid cancer.  It means that it is probably still in the neck but not taking up RAI so it can't be seen.  Often times, it is functioning less than regular thyroid tissue so the tracer dose might be too low to see it and they will often see it with the ablative dose.
> 
> More than likely this is not the case but it is one scenario.



Ok, good to know. My Dr. had mentioned that if it was in lymph nodes they might inject them directly with alcohol to try and kill the node but I wasn't sure how they would do that if they couldn't see them on the RAI scan anyway.


----------



## luvmarypoppins

Micayla - I am so sorrry that you have to go through all of this. I hope this new blood test is ok. 

I also heard my np mention about the alcohol too. 

Wishing you all the best.


----------



## es45

mrsklamc said:


> Ok, good to know. My Dr. had mentioned that if it was in lymph nodes they might inject them directly with alcohol to try and kill the node but I wasn't sure how they would do that if they couldn't see them on the RAI scan anyway.



Good luck with your test


----------



## mrsklamc

I am so frustrated. They told me they would call back today about whether I can go back on my meds and still nothing. I am tempted to just do it, this is ridiculous.


----------



## Christine

My coworker has had the alcohol ablation.  They wanted her to do it some more but she won't.  Wherever they've done it, it has affected her voice/throat area.


----------



## mrsklamc

Well here's hoping they don't recommend that! BUT I can start taking synthroid so I'm glad for that.


----------



## Christine

mrsklamc said:


> Well here's hoping they don't recommend that! BUT I can start taking synthroid so I'm glad for that.




Oh that's just great!!  It feels wonderful to get back on your meds.

I don't know much about alcohol ablation--just that they use it for resistant cases (or so I thought).  My coworker has thyroid cancer that they cannot get rid of through RAI.  It keeps popping up in her neck--small enough so they cannot do surgery but it is there.  Her thyroglobulin remains elevated and she's had lots of RAI on it which no longer seems to take care of it.  She is treated by one of the biggest thyroid cancer gurus in the country.  She's one of the first I've known to do the alcohol ablation (a few years ago).  She felt like she had a lot of side effects after it.  She's had more thyroid cancer come up and they were talking to her about doing another round of the alcohol.  She was resistant to it.  But then she found out she had breast cancer so she has been dealing with that right now.  Poor thing, she has been through a lot.


----------



## es45

Christine said:


> I don't know much about alcohol ablation--just that they use it for resistant cases (or so I thought).  My coworker has thyroid cancer that they cannot get rid of through RAI.  It keeps popping up in her neck--small enough so they cannot do surgery but it is there.  Her thyroglobulin remains elevated and she's had lots of RAI on it which no longer seems to take care of it.  She is treated by one of the biggest thyroid cancer gurus in the country.  She's one of the first I've known to do the alcohol ablation (a few years ago).  She felt like she had a lot of side effects after it.  She's had more thyroid cancer come up and they were talking to her about doing another round of the alcohol.  She was resistant to it.  But then she found out she had breast cancer so she has been dealing with that right now.  Poor thing, she has been through a lot.



Christine, do you know how elevated is her thyroglobulin? Just curious what is normal for someone in this situation.


----------



## Christine

es45 said:


> Christine, do you know how elevated is her thyroglobulin? Just curious what is normal for someone in this situation.


You know, she has told me before.  It's not awfully high.  Under 10 I would say.  God I hate having a bad memory.  It may even be as low as between 2 and 4.


----------



## mrsklamc

Christine said:


> Oh that's just great!!  It feels wonderful to get back on your meds.



YES!! And people just do NOT get it. It feels SO good not to feel...dull. I've showered every single day but this morning I was savoring the feeling of the towel rubbing across my skin. I was so 'out of it' that I wasn't really experiencing it I guess. I was ok for 'social' stuff but not for anything analytical- friends determined to get me out of the house took me out during the day on Monday and the best way I could explain it was that it felt like watching the events unfold in a movie rather than actually being there.


----------



## mrsklamc

GP's office called to say they were faxing it to the endo. I asked what the number was. She said 5.7


----------



## Christine

mrsklamc said:


> GP's office called to say they were faxing it to the endo. I asked what the number was. She said 5.7



Your Tg was 5.7?


----------



## mrsklamc

Christine said:


> Your Tg was 5.7?



Yes. I was SO SURE it was going to be clear.


----------



## Christine

mrsklamc said:


> Yes. I was SO SURE it was going to be clear.



Well, don't go to far down in the dumps yet...

Do you remember what your Tg was when you discovered you had cancer?  Was it fairly high?

The reason I ask is that the RAI does take some time to do its job.  This is one of the reasons that some doctors do not do RAI or scans at a 6-month interval.  When you have your big blast of RAI treatment, it can take a number of months for the Tg (and remaining thyroid tissue to decrease).  You will often see a gradual decrease in this number in those that have a fairly high Tg to begin with.  Often times, the true measure of how an RAI treatment worked is not until about a year after the ablation.

I'm not sure how your doctor will handle.  They may opt to wait another 6 months and do this all over again and get a Tg level.  If there is still a measurable Tg, I would think that they would want to give you another dose.

Or, maybe your endo feels confident that the amount of time that has passed is sufficient to get a good Tg reading right now and he/she may want to prep you for another treatment.  If they do give you another treatment, that does will be sufficiently high enough that they probably will see where the residual thyroid cells are.  

It will be interesting to see how your endo views this.


----------



## mrsklamc

No, when I was first diagnosed I was just clueless...

The only number I know was the last blood test she said it was less than one, they prefer undetectable, but of course I was medicated then.


----------



## luvmarypoppins

Micayla - I am sending you a big ol . I was thinking about the "time" issue that christine commented upon.   Didnt you have your original dose in nov? That would only be 9 mos. My rad. onc. said the scan couldnt take place until at least 1 year post rai. 

I hope you get the explanations and answers you are looking for. We are with you in your journey. Hang in there!!


----------



## Christine

mrsklamc said:


> No, when I was first diagnosed I was just clueless...
> 
> The only number I know was the last blood test she said it was less than one, they prefer undetectable, but of course I was medicated then.



A medicated, unstimulated Tg (measured while on Synthroid) isn't overly reliable.  Yes it is somewhat reliable because you certainly want to make sure that you have no elevation while you are being treated with Synthroid but the gold standard is a stimulated Tg test to give the "true" results.  

Hopefully your endo can tell you what your Tg was before and after your surgery and at the time of your first treatment.  That will give them some sort of clue on how to proceed.

Also, I know this is a big letdown for you.  They always lead you to believe that everything will be "cleaned up" with one shot of RAI.  I ended up having to have 3 treatments.  It was a real emotional blow to me.


----------



## es45

mrsklamc said:


> No, when I was first diagnosed I was just clueless...
> 
> The only number I know was the last blood test she said it was less than one, they prefer undetectable, but of course I was medicated then.



Thinking of you


----------



## mrsklamc

Christine said:


> Also, I know this is a big letdown for you.  They always lead you to believe that everything will be "cleaned up" with one shot of RAI.  I ended up having to have 3 treatments.  It was a real emotional blow to me.



Yes, that's it exactly...The only other thing I am seeing online is something to the effect that some of us will develop Tg antibodies that essentially render the Tg useless...Does that sound right?

I have one other 'confession' but I don't think it really affected the fact that there was detectable Tg. You know how I said the RAI people told me to start back on my meds? I took ONE cytomel when I was convinced that the endo's office wasn't going to call me back and I was just desperate to go back on my meds. I think that if anything that would make the Tg read falsely low, though, and not falsely high?

ETA: I looked online before the second blood draw and it said that cytomel stayed in your system for 2.5 days and the 2nd blood draw was a full 3 days later, so I figured it would be OK. I know it was a dumb thing not to be honest with the endo's office to begin with but I just felt like any more time off the drugs and I was going to have a nervous breakdown.


----------



## dischick4778

Good luck mrsklamc.  My thoughts are with you.  It has only been 8 weeks since this whole thing started for me so it is fresh in my mind and I can't even imagine having to start the process over.  Sending you 

Tomorrow is my follow up with my surgeon.  Not sure what we are going over, but I dread even going into his office.  Last time I was there I got nothing but bad news.  Hoping for a positive visit.


----------



## mrsklamc

I am now 8 months post RAI- I wonder if it might be still working? I don't mind so much doing it again- I mean, I'm not looking forward to it or anything- it's just that I feel the baby window might be closing on me and that's what stresses me out more than anything. 

Christine, did your friend not to do more ablation because it is painful? Is that the part she didn't want to go through again? Also...If it's RAI resistant in lymph nodes, would that show up on an ultrasound?


----------



## Christine

mrsklamc said:


> I am now 8 months post RAI- I wonder if it might be still working? I don't mind so much doing it again- I mean, I'm not looking forward to it or anything- it's just that I feel the baby window might be closing on me and that's what stresses me out more than anything.
> 
> Christine, did your friend not to do more ablation because it is painful? Is that the part she didn't want to go through again? Also...If it's RAI resistant in lymph nodes, would that show up on an ultrasound?




I don't think it was painful but something about it has made her hoarse all the time and she has voice and some swallowing issues.  This is for the alcohol ablation.

Yes, her spots are showing up on ultrasound.  They may actually be showing up on her annual scans; however, RAI treatments are not getting rid of it.  She's had so much that she won't be taking any more large treatments.


----------



## mrsklamc

Dr's assistant called- Dr. is out on Fridays, and didn't get a chance to look at my results, but they are high. Dr. will probably call herself on Monday. She didn't have the antibody results in front of her but she didn't think they were a factor in the Tg being high.


----------



## Christine

mrsklamc said:


> Dr's assistant called- Dr. is out on Fridays, and didn't get a chance to look at my results, but they are high. Dr. will probably call herself on Monday. She didn't have the antibody results in front of her but she didn't think they were a factor in the Tg being high.



*Generally* antibodies will reduce a Tg rate.  I say "generally" because there is always an exception.  Tg antibodies develope when your body sees Tg, doesn't like it, so the antibodies come in and try to KILL the Tg.  I had antibodies during my initial diagnosis phase but they went away when my Tg was reduced.  If anything, if Tg antibodies are present they will give a false negative.  That is why a thyroid cancer patient must have the antibody test done ALWAYS with the TG test.  You don't want to be sitting around with a negative Tg when the antibodies could be what is destroying them.  A negative/undetectable Tg with antibodies present is always looked at suspiciously.


----------



## mrsklamc

Oh. From my amateur sleuthing on the web, I thought I had gotten the idea that antibodies could falsely indicate the presence of Tg when it wasn't really there. This is why I should wait for my dr. before I go googling things I guess. 

Christine, is it your experience that they only do the alcohol ablation after multiple RAIs have failed?


----------



## Christine

mrsklamc said:


> Oh. From my amateur sleuthing on the web, I thought I had gotten the idea that antibodies could falsely indicate the presence of Tg when it wasn't really there. This is why I should wait for my dr. before I go googling things I guess.



Antibodies cannot exist if there is no thyroglobulin.  Antibodies are an autoimmune response to a substance that your body views as an invader.  If you have Tg present and you have a tendency to develop antibodies, you will develop Tg antibodies.  When you get rid of all the Tg in your body, you will no longer have antibodies because there is nothing left for the body to react to.   Tg antibodies will give a false reading on your thyroglobulin levels.  It really only becomes important in the situation where you have an undetectable Tg yet you have antibodies.  In that case, you cannot rely on the the undetectable Tg result.  If you have a Tg of, say, 3.5 and you have antibodies, you cannot rely on the fact that your Tg is only 3.5.  It could be higher but the antibodies are reducing it to some extent.  They cannot prove that antibodies reduce Tg or how much they reduce Tg but they are pretty sure that antibodies do reduce Tg levels.  

Did you have antibodies?



> Christine, is it your experience that they only do the alcohol ablation after multiple RAIs have failed



When alcohol ablation first came out, it was only used on resistant to RAI cases.  As with everything, once they use it enough times on the "stubborn" cases, they start using it on everyone who could receive benefit from it.  This is how Thyrogen got its start.  They used to actually never give an ablative dose of RAI with Thyrogen unless you were so old and frail that that's the only way it could be done.  Now they are doing it more and more in the general population.  I think this may be the case with alcohol ablation.

It could be, in the long run, if they can knock out thyroid cancer with alcohol ablation, it will be better for you than having multiple RAI treatments.  I have not researched alcohol ablation so I would want to know what the ramifications are of that treatment.


----------



## mrsklamc

Thanks Christine! I believe I HAD antibodies but the assistant said they weren't particularly elevated. 

The last time I saw my endo she mentioned that sometimes once the thyroid cells were in the lymph nodes they could be resistant and that one thing they did with that was alcohol ablation so I'm hoping that could be the next step and possibly then be less of a delay than RAI, depending on how long they like to wait to see how it works. Plus, no diet, I'm assuming. I will just wait and see what she has to say.


----------



## Christine

mrsklamc said:


> Thanks Christine! I believe I HAD antibodies but the assistant said they weren't particularly elevated.
> 
> The last time I saw my endo she mentioned that sometimes once the thyroid cells were in the lymph nodes they could be resistant and that one thing they did with that was alcohol ablation so I'm hoping that could be the next step and possibly then be less of a delay than RAI, depending on how long they like to wait to see how it works. Plus, no diet, I'm assuming. I will just wait and see what she has to say.



Yes, there won't be any diet or waiting or being off meds for alcohol ablation.  That's good.

It's a shame your doctor has to make you wait till next week.  I know doctors just do this but it really stinks.


----------



## mrsklamc

Well, she's only in 3 days a week, and she's very highly in demand because she IS a really good doctor. My first endo I would hear back from sooner, but not as great a dr. So I really don't mind waiting to Monday. My thought is, they weren't really going to do anything between now and Monday anyway.


----------



## luvmarypoppins

Micayla - Sending you some  thoughts. I am sure tomm. cant come fast enough for you to hear from your endo. My thoughts and prayers are with you. Hang in there!!

dis chick - How did your surgeon visit go? I just wanted to say if they suspect any voice problems are they going to do a scope on you? My surgeon did a pre op scope and lots of post op scopes. You could see the damaged/weak vocal cord etc. They mentioned to me there is an operation if the voice really is not comng back. Its just one day. They put you to sleep and inject foam on both sides of the vocal chord to bring it closer together. It was an option but ptl I didnt need it. Hope all went well for you.


----------



## Just_Trish

Hi there everyone, 

I am ashamed to admit how naive I am/have been about my thyroid. I was diagnosed hypo about 5 years ago. I have been on 50mcg of levothyroxine since day 1 and my TSH has been usually about 5. The Dr (Primary care) was satisfied with that, although at times it has bounced as low as 3.5

For the last couple of months I've been feeling terrible run down and sluggish, NO energy whatsoever. Finally went to the Dr (no insurance so I can't go as often as I would like) my TSH was 13!! Now, again, naive here so I don't know the other numbers. They raised me to 75mcg and I actually feel a little more alive, but not great.... they said they would retest in 6 weeks and raise again if needed. 

My question is this: how/why can the TSH jump from 5 in January of this year to 13 in July?!?! My pharmacist suggested that because I had been taking Tums when I took my pill, maybe it wasn't absorbing properly....but really?! That seems like a big jump to me and all they want me to do is wait 6 weeks! 

Thank you for any input!


----------



## mrsklamc

Just_Trish said:


> My question is this: how/why can the TSH jump from 5 in January of this year to 13 in July?!?! My pharmacist suggested that because I had been taking Tums when I took my pill, maybe it wasn't absorbing properly....but really?! That seems like a big jump to me and all they want me to do is wait 6 weeks!
> 
> Thank you for any input!



No...it's labeled very clearly on my synthroid bottle that calcium (tums) can interfere with absorption, so I don't think that's a leap at all...and Synthroid is a long acting drug, so 6 weeks is a standard amount of time to wait before testing your levels to see how you are doing. I am sorry.


----------



## angwill

Just_Trish said:


> Hi there everyone,
> 
> I am ashamed to admit how naive I am/have been about my thyroid. I was diagnosed hypo about 5 years ago. I have been on 50mcg of levothyroxine since day 1 and my TSH has been usually about 5. The Dr (Primary care) was satisfied with that, although at times it has bounced as low as 3.5
> 
> For the last couple of months I've been feeling terrible run down and sluggish, NO energy whatsoever. Finally went to the Dr (no insurance so I can't go as often as I would like) my TSH was 13!! Now, again, naive here so I don't know the other numbers. They raised me to 75mcg and I actually feel a little more alive, but not great.... they said they would retest in 6 weeks and raise again if needed.
> 
> My question is this: how/why can the TSH jump from 5 in January of this year to 13 in July?!?! My pharmacist suggested that because I had been taking Tums when I took my pill, maybe it wasn't absorbing properly....but really?! That seems like a big jump to me and all they want me to do is wait 6 weeks!
> 
> Thank you for any input!



Thyroid meds are supposed to be taken on an empty stomach and with water only.  I had problems when I took a multivitamin with Iron and the Iron caused my TSH to go into the 20's.  I now take it as soon as I get up with water and then don't eat for at least two hours afterward.  I also take a multivitamin with no iron at night.

HTH


----------



## mrsklamc

Endo called this morning and scheduled an ultrasound for today. If they can see lymph nodes, she wants to do surgery. She didn't say RAI but I'm sure she's thinking it cause she said to switch back to cytomel.


----------



## Christine

mrsklamc said:


> Endo called this morning and scheduled an ultrasound for today. If they can see lymph nodes, she wants to do surgery. She didn't say RAI but I'm sure she's thinking it cause she said to switch back to cytomel.




Uuugggghhhh.  I'm sorry (I think).  Sounds like your endo is taking the best approach.  Surgery is always the gold standard.  If you can get at it, then just pull it out.  I am sort of surprised that they didn't put you back on your meds.  I wonder what the thought process is there?  Probably if they can't see anything on the ultrasound you'll just go right in for RAI.


----------



## Just_Trish

mrsklamc said:


> No...it's labeled very clearly on my synthroid bottle that calcium (tums) can interfere with absorption, so I don't think that's a leap at all...and Synthroid is a long acting drug, so 6 weeks is a standard amount of time to wait before testing your levels to see how you are doing. I am sorry.



Wow....thanks for the info! I just checked both mine and my mothers bottles (filled at 2 different pharmacies) and neither one is marked with that. Just says to take with a full glass of water. 

After this fright I am definitely going to learn more about all this thyroid stuff so I can be better informed!


----------



## mrsklamc

Christine said:


> Probably if they can't see anything on the ultrasound you'll just go right in for RAI.



I have been back on the synthroid since Weds. so I'd guess that's what she's thinking...I did ask about the alcohol ablation and she said the problem with alochol ablation is that you have to know exactly what you are looking at to do it, and if that's the case she'd rather do surgery. Which confuses me just a tad because she's the one who first brought up alcohol ablation. But, whatever.... not looking forward to RAI but I'll live.


----------



## luvmarypoppins

Micayla - . Its good your endo/surgeon has a plan. 

Wishing you all the best with the ultrasound today.

My surgeon told me if it comes back they will cut out as much as possible and then do more RAI too. I had the 47 lymph nodes out. They told me there are over 200 in your neck. I am guessing about 50 in each quadrandt etc. 

So do you have to do the med withdrawl and diet again? Just curious as to what your endo thinks of thyrogen. But I am sure they want the consistecy of the withdrawl and supposedly it more sensitive?


----------



## mrsklamc

luvmarypoppins said:


> So do you have to do the med withdrawl and diet again? Just curious as to what your endo thinks of thyrogen. But I am sure they want the consistecy of the withdrawl and supposedly it more sensitive?



She hasn't told me.


----------



## mrsklamc

The ultrasound tech said there was nothing there so I have no idea what the next step is (other than, wait for the endo to call me.)


----------



## grafxgirl

I was diagnosed with Hashimoto's Disease in April of 2007. Boy has it been a long, hard battle! It was about 6 months after my son was born, I was having hair loss, brittle nails, dry skin, tingly hands/feet, weight gain (over a year's time I went from my usual 120 lbs to 186 lbs!), joint pain, and irritability. My OB and GP told me it was because it takes time for the body to go back to normal after a pregnancy, and in most cases up to a year (I no longer have them as doctors). I decided to switch because no one was listening, and my new GP immediately sent my blood work off for some test. The next day, she said it was my thyroid, and referred me to an endocrinologist. I was immediately started on Synthroid, and also sent for ultrasounds of my thyroid and it was discovered that I had 3 nodules on the left side of my thyroid so it was time for a biopsy, at which they decided to keep an eye on the nodules because they were very small. Within 6 months time they noticed 2 of the nodules disappeared, and one was nearly gone. As of this January, it has been 2 years and my ultrasounds are great, and I am now seeing my endocrinologist every 6 months instead of every 2 months. I do struggle with weight, but have managed to lose 55 lbs with lots and lots of running and strength training, as well as a good diet. I realize I will have my ups and my downs, and just try to do what I can day to day to keep a positive attitude and just stay healthy.


----------



## grafxgirl

Just_Trish said:


> Hi there everyone,
> 
> I am ashamed to admit how naive I am/have been about my thyroid. I was diagnosed hypo about 5 years ago. I have been on 50mcg of levothyroxine since day 1 and my TSH has been usually about 5. The Dr (Primary care) was satisfied with that, although at times it has bounced as low as 3.5
> 
> For the last couple of months I've been feeling terrible run down and sluggish, NO energy whatsoever. Finally went to the Dr (no insurance so I can't go as often as I would like) my TSH was 13!! Now, again, naive here so I don't know the other numbers. They raised me to 75mcg and I actually feel a little more alive, but not great.... they said they would retest in 6 weeks and raise again if needed.
> 
> My question is this: how/why can the TSH jump from 5 in January of this year to 13 in July?!?! My pharmacist suggested that because I had been taking Tums when I took my pill, maybe it wasn't absorbing properly....but really?! That seems like a big jump to me and all they want me to do is wait 6 weeks!
> 
> Thank you for any input!



The advice my endocrinologist gave me was to take my Synthroid first thing in the morning, on an empty stomach with plenty of water. She told me to not eat for at least 1 hour but 2 hours would be the best. Do not take any medications such as vitamins, calcium, birth control, antacids within a 4 hour time period after taking the Synthroid. I was also told not to drink coffee because it also affects the effectiveness of the Synthroid. Avoid soy products and grapefruit/grapefruit juice.

When I first started I was also taking Levothyroxine. It is the generic for Synthroid. My levels bounced all over the place and would not stabilize. My endocrinologist said it would be best to switch over to the brand name Synthroid. The reason is there are many companies that make the generic form; they don't do them the same, which means ingredients fluctuate and effectiveness fluctuates. The pharmacies don't tend to order from the same company all the time, which means, your prescription may change a bit. This is not true for the brand name, and most patients see improvement when using it. We gave it a shot and it worked! My levels stabled out and finally dropped down to the normal range.

I also like my doctor because she listens to what I have to say about how I'm feeling and she uses that as an indicator to adjust my medication instead of just relying on charts and figures.


----------



## grafxgirl

ElizK said:


> I can't thank you enough for the information ya'll have been able to give me. I'd like to pick your brains again, if you don't mind.
> 
> Last time I posted I mentioned the random sore throats.  Still doing that, but since last week it feels like I have a big lump in my throat.  My thyroid is definitely enlarged.  Sometimes it is more uncomfortable than other times. I'm having my follow-up blood work done today, so I'll find out if my dose adjustment was enough..
> 
> I don't even know what I'm asking... maybe I just need a pat on the head?  I can't find anything about any of this that would send me running for the doctor's office. I can't feel any new nodules, overall I feel about the same.   Any words of wisdom for me?



I had a feeling of a lump in my throat too, and sometimes felt like my throat was closing off. As my medication increased it disappeared. I think it is time for an increase again since I'm occasionally feeling the tightness in my throat recently, along with a little tiredness. My appt. is next week so we'll see what happens.


----------



## angwill

I am glad you got your thyroid taken care of and did what was best for you.  

One thing that is true is that a lot of women have thyroid issues after having a baby and it does take up to a year for the hormones and others to level off and become normal.  A lot of doctors don't want to put women within a year of having a baby on synthroid because once you start taking it you can never stop.  Their hope is that things will level off within the year and there will be no need to take the meds for the rest of your life and if not then they take action.



grafxgirl said:


> I was diagnosed with Hashimoto's Disease in April of 2007. Boy has it been a long, hard battle! It was about 6 months after my son was born, I was having hair loss, brittle nails, dry skin, tingly hands/feet, weight gain (over a year's time I went from my usual 120 lbs to 186 lbs!), joint pain, and irritability. My OB and GP told me it was because it takes time for the body to go back to normal after a pregnancy, and in most cases up to a year (I no longer have them as doctors). I decided to switch because no one was listening, and my new GP immediately sent my blood work off for some test. The next day, she said it was my thyroid, and referred me to an endocrinologist. I was immediately started on Synthroid, and also sent for ultrasounds of my thyroid and it was discovered that I had 3 nodules on the left side of my thyroid so it was time for a biopsy, at which they decided to keep an eye on the nodules because they were very small. Within 6 months time they noticed 2 of the nodules disappeared, and one was nearly gone. As of this January, it has been 2 years and my ultrasounds are great, and I am now seeing my endocrinologist every 6 months instead of every 2 months. I do struggle with weight, but have managed to lose 55 lbs with lots and lots of running and strength training, as well as a good diet. I realize I will have my ups and my downs, and just try to do what I can day to day to keep a positive attitude and just stay healthy.


----------



## Christine

Just_Trish said:


> Wow....thanks for the info! I just checked both mine and my mothers bottles (filled at 2 different pharmacies) and neither one is marked with that. Just says to take with a full glass of water.
> 
> After this fright I am definitely going to learn more about all this thyroid stuff so I can be better informed!




Those instructions will not be on the bottle.  They will come on the little printout that the pharmacy should be giving you each time you pick up your perscription.  You an also read it on line.  It is often called a drug monologue.


----------



## mrsklamc

Per usual    - Christine is correct. Start LID immediately, stop meds immediately, get TSH tested on Monday. Getting the Tg tested again too just in case the cytomel did anything to it, although the doc seems to think she's just humoring me. As soon as TSH is over 30, another treatment dose of RAI.


----------



## Christine

mrsklamc said:


> Per usual    - Christine is correct. Start LID immediately, stop meds immediately, get TSH tested on Monday. Getting the Tg tested again too just in case the cytomel did anything to it, although the doc seems to think she's just humoring me. As soon as TSH is over 30, another treatment dose of RAI.



So glad to hear from you.  I've been thinking about you all day and I keep checking this thread for you!!

So, I am taking from this that the ultrasound didn't show anything?  

Glad to hear you have a plan.  I'm betting your TSH rises pretty fast at this point because you have no long-acting meds in your system.  

Hang in there.  Did you doctor say that they will do a post-ablative scan.  I would like to know if they can see this remnant once you have taken the ablative dose of RAI.


----------



## luvmarypoppins

I have been thinking about you and praying for you too Micayla.

I am glad that the ball is rolling so to speak. Wish that you wouldnt have to go through all of this again. My heart aches for you,  but I know you are a fighter and you know you have been there and done that before.

Did your endo tell you what the rai dosage will be this time? Hang in there and fight tough. There is light at the end of the tunnel.


----------



## mrsklamc

Thank you...no, she didn't say what the dosage is or whether there would be a post ablative scan but I would assume so...Surely they'd want to do that. She did say there is nothing on the scan but there's SOMETHING causing the Tg and she wants to get rid of whatever it is. 

The ultrasound lady mentioned yesterday that they are starting to trend towards doing an ultrasound automatically with the nuclear scan...I kinda wondered why they hadn't. 

Dr. said she'd order the RAI as soon as the TSH hit 30. Part of me has to wonder if we'd be doing this if they hadn't done the initial 'tracer' dose since Christine mentioned the school of thought that says it stuns the thyroid. Maybe this dose will be more effective then? 

I told my DH I know we *can* do this but my inner two year old says "I don't WANNA!'


----------



## dischick4778

mrsklamc - I am so sorry that you are going through this.  Sending you all my best thoughts, prayers, and .  Please be strong and do what needs to get done.

As for my visit to the surgeon - it went well.  The only thing he is not happy about is my voice.  He did say it could take up to 6 months but he thought it would have improved by now.  I know there is a procedure for it, but I'm just not sure I'm mentally up for another procedure at this point.  It doesn't seem that important to me.  I can be heard, I just cannot raise my voice / speak loudly.

I'm concerned about the comments regarding the thyroid medication.  I am taking levothyroxine 150.  The bottle says to take on an empty stomach and not to eat for 30 minutes.  Which I have been doing.  Someone wrote that Calcium can interfere?  My surgeon has me taking 2,000 calcium every day because I have had numbness in my hands since the surgery.  He said that the numbness comes from the parathyroid that they reimplanted and in order to improve it I have to take calcium.  Is this a problem with the levothyroxine?  I would think my surgeon or endo should have told me this and now I wonder if I should be concerned.


----------



## luvmarypoppins

dis chick - I dont know about the calcium question. My endo also has me taking 50,000 vit d once a week.

 Also I only do the name brand synthroid because of what I read here on the boards about the filler. My ins. doesnt pay for it, but I figure its worth it to me to get it so there wont be any problems etc.

Did you see my post about that surgical procedure. There are many things they can do before they would resort to that. I had the many scopes and in January I had the strobe test. Ask your surgeon about this. They hook up something like a dog collar on your neck and make you say eee and aaa alot and the wires are connected to a computer that prints out a reading which is being looked at by a speech therapist while the surgeon/doctor has the scope down you. Strange but a very definitive test as to whats going on. My test showed no damage and good vocal cord function but still the voice problems persist. It helps to be hydrated and I found that sucking on hard candys, not necessarily the lemon drops, helps. Even a jolly rancher etc.


----------



## angwill

dischick4778 said:


> mrsklamc - I am so sorry that you are going through this.  Sending you all my best thoughts, prayers, and .  Please be strong and do what needs to get done.
> 
> As for my visit to the surgeon - it went well.  The only thing he is not happy about is my voice.  He did say it could take up to 6 months but he thought it would have improved by now.  I know there is a procedure for it, but I'm just not sure I'm mentally up for another procedure at this point.  It doesn't seem that important to me.  I can be heard, I just cannot raise my voice / speak loudly.
> 
> I'm concerned about the comments regarding the thyroid medication.  I am taking levothyroxine 150.  The bottle says to take on an empty stomach and not to eat for 30 minutes.  Which I have been doing.  Someone wrote that Calcium can interfere?  My surgeon has me taking 2,000 calcium every day because I have had numbness in my hands since the surgery.  He said that the numbness comes from the parathyroid that they reimplanted and in order to improve it I have to take calcium.  Is this a problem with the levothyroxine?  I would think my surgeon or endo should have told me this and now I wonder if I should be concerned.



I would just call you doctor's office and ask about the calcium.  It maybe that you should take it at a different time than the synthroid.  I just make sure to take the thyroid med with only water first thing in the morning and I take my vitamins and any other meds in the evening.  

HTH


----------



## Christine

Just take the calcium two hours apart from the thyroid medication.

Also, since you must take this calcium, they will just continue to up your thyroid medication dosage so that you get enough even with the calcium *maybe* interfering.  It might just be that you need a higher dose of thyroid medication while you take the calcium.  Lots of thyroid patients have to do this so I am sure they are familiar with how to work around this issue.


----------



## Dιsneч Tιnk ♥

_Wow! we have a Thyroid thread (sorry, im new to this and a bit dim)?! 
That's brilliant, i can't often talk about it because not many people i know have Thyroid problems and they dont understand but it's nice i can talk and say that i have an Under-Active Thyroid without people asking "Whats that?" and me repeating myself like a book

anyway, 

i have an under-active thyroid from when i had cancer when i was 9 due to all the chemo (i think thats what caused it, im not too sure, my mum knows everything, i just know i have an under-active thyroid and have to take tablets). Ive had an Under-Active Thyroid now for a couple of years, and have to take Levothyroxine(sp?) once daily for the rest of my life or until i need to stop taking them. I also noticed when i was first diagnose with an under-active thyroid, my hair fined, i had really thick hair and now its fine and horrible which the doctor said would happen which is a bit of a pain_


----------



## Christine

Dιsneч Tιnk ♥;37959572 said:
			
		

> _Wow! we have a Thyroid thread (sorry, im new to this and a bit dim)?!
> That's brilliant, i can't often talk about it because not many people i know have Thyroid problems and they dont understand but it's nice i can talk and say that i have an Under-Active Thyroid without people asking "Whats that?" and me repeating myself like a book
> 
> anyway,
> 
> i have an under-active thyroid from when i had cancer when i was 9 due to all the chemo (i think thats what caused it, im not too sure, my mum knows everything, i just know i have an under-active thyroid and have to take tablets). Ive had an Under-Active Thyroid now for a couple of years, and have to take Levothyroxine(sp?) once daily for the rest of my life or until i need to stop taking them. I also noticed when i was first diagnose with an under-active thyroid, my hair fined, i had really thick hair and now its fine and horrible which the doctor said would happen which is a bit of a pain_



Welcome.

I never had my hair thin out at all when my thyroid was shut down (surgery).  I did go through a spell of losing a lot of it when it got REALLY underactive (hypo).  But it all came back when my levels of thyroid hormone got where they needed to be.  I know that if your meds aren't adjusted right (too much or too little) it can affect your hair but it shouldn't be permanent.

Now, chemotherapy for cancer, on the other hand is FAMOUS for changing people's hair.   Many people lose their hair when they have chemo treatments and say that when the hair grows back it is very different.


----------



## Dιsneч Tιnk ♥

_


Christine said:



			Welcome.

I never had my hair thin out at all when my thyroid was shut down (surgery).  I did go through a spell of losing a lot of it when it got REALLY underactive (hypo).  But it all came back when my levels of thyroid hormone got where they needed to be.  I know that if your meds aren't adjusted right (too much or too little) it can affect your hair but it shouldn't be permanent.

Now, chemotherapy for cancer, on the other hand is FAMOUS for changing people's hair.   Many people lose their hair when they have chemo treatments and say that when the hair grows back it is very different.
		
Click to expand...


Thankyou for the welcome

my medication hasnt been adjusted or anything since i've been on the tablets, my mums trying to push our local hospital (they dont specialise in the chemo and that, they're just the basic for accidents and ill children and that so we had to travel) because my levels are just under, but they seem to think its okay and doesnt need changing.

My hair changed ALOT when it grew back from chemotherapy, i was originally a strawberry blonde and it was really thick before i lost it, then it grew back black and thick, then when i lost it again it came back mousey brown and a little less thicker._


----------



## dischick4778

Spoke with my surgeon and as many of you said he suggested taking the calcium later in the day.  

luvmarypoppins - thank you for the info on the voice procedure.  My surgeon hasn't really gone into detail about it, he just keeps saying they can fix it.  So I didn't know what they would do.  What you are describing doesn't sound so bad.  But it is still early.  Hopefully it will heal on its own.  Thank you for the info though, I feel a lot better.


----------



## grafxgirl

Has anyone ever been told that they are at an increased risk for developing breast cancer since they have a thyroid disorder? 

My Gyn had me do a pre-screen mammogram (I'm 35 with Hashimoto's)  a month ago. Thankfully everything came back okay, but my insurance company won't pay for it because they deem it unnecessary since I am not 40 or older. I've read studies that show that women with autoimmune thyroid diseases such as Grave's or Hashimoto's is at an increased risk of developing breast cancer, and the fact that I've had a few of the Radioactive Iodine Uptake Tests also increases that risk.

If I can prove this to be true, and prove that it is medically necessary then my insurance company will pay for the mammogram.

I see my endocrinologist on Monday, so I will ask her and I also have a phone call into my Gyn to speak with him. He will call me back during his office hours after he is finished with his scheduled patients.


----------



## mrsklamc

Grafxgirl- my endo said I'm at a slightly higher risk of developing other kinds of cancer but they don't know if it's due to the same factors that caused the thyroid cancer, or the RAI treatment. Probably not very helpful to you,  I'm sorry.

Does anyone know if my second dose of RAI will be larger since the tissue is presumably resistant?


----------



## Christine

mrsklamc said:


> Grafxgirl- my endo said I'm at a slightly higher risk of developing other kinds of cancer but they don't know if it's due to the same factors that caused the thyroid cancer, or the RAI treatment. Probably not very helpful to you,  I'm sorry.
> 
> Does anyone know if my second dose of RAI will be larger since the tissue is presumably resistant?



It probably should be but you never know.

When I had my first "remnant" that needed to be ablated, they gave me 150 mci (this was after my initial 29.9 mci treatment that did not work).  The next time I went in (a year later) the residual tissue was still there yet it was smaller and uptaking less RAI.  The doctor then wanted to give me 200 mci because the smaller it gets and the less it shows up on RAI, the more RAI it needs to destroy it.  I *begged* him not to give me 200 mci because I had such a problem with 150 mci (terrible nausea, fried salivary glands, an insulin/blood sugar problem while in the hospital after my treatment that was very scary).  So he relented and did the 150 mci again.  I didn't seem to suffer so much with the second 150 mci (my salivary glands were okay, no blood sugar issues, same nausea).   It happened to work that time and I've been free of residual tissue ever since.   But, the thinking on the part of the nuclear physician is that the smaller/less visible it was, the more RAI needed to get it.


----------



## es45

Christine said:


> It probably be should be but you never know.
> 
> When I had my first "remnant" that needed to be ablated, they gave me 150 mci (this was after my initial 29.9 mci treatment that did not work).  The next time I went in (a year later) the residual tissue was still there yet it was smaller and uptaking less RAI.  The doctor then wanted to give me 200 mci because the smaller it gets and the less it shows up on RAI, the more RAI it needs to destroy it.  I *begged* him not to give me 200 mci because I had such a problem with 150 mci (terrible nausea, fried salivary glands, an insulin/blood sugar problem while in the hospital after my treatment that was very scary).  So he relented and did the 150 mci again.  I didn't seem to suffer so much with the second 150 mci (my salivary glands were okay, no blood sugar issues, same nausea).   It happened to work that time and I've been free of residual tissue ever since.   But, the thinking on the part of the nuclear physician is that the smaller/less visible it was, the more RAI needed to get it.



Christine, it seems that residual tissue is a common problem. However, recurrences are rare, correct?


----------



## Christine

es45 said:


> Christine, it seems that residual tissue is a common problem. However, recurrences are rare, correct?



It's hard to say.  How many "recurrences" are actually residual tissue finally deciding to get busy 10 years later?  I don't think anyone has a way of really knowing.  I have supposedly been clean since 1998?  But am I really?  What if something pops up in another 5 years.  Was I really clean? I don't think so.  It's just hard to say.  In my opinion, recurrences are the result of residual tissue.  Residual tissue found consistently after diagnosis is just that=residual tissue and should not be deemed a recurrence.  I guess if I get something it the next few years it is a recurrence.  I don't think they are all that rare, actually.


----------



## luvmarypoppins

Micayla - wishing you all the best. Sending thoughts and prayers your way. Hang in there girl! You know you are tough!! What was your original rai?

My rad. onc. said I got 150 mci for the normal dose, then 25 mci for the lymph node mets and then another 25 mci for the agressive columnar cell variant. So 200 mci total.

I dont think I could handle more than 200 mci at once again if I have to too. I am a pretty big person anyway, so maybe she took that into account too?

Any idea when you will get your treatment yet? Well go have a nice berry sorbet o.k.


----------



## mrsklamc

luvmarypoppins said:


> Micayla - wishing you all the best. Sending thoughts and prayers your way. Hang in there girl! You know you are tough!! What was your original rai?
> 
> My rad. onc. said I got 150 mci for the normal dose, then 25 mci for the lymph node mets and then another 25 mci for the agressive columnar cell variant. So 200 mci total.
> 
> I dont think I could handle more than 200 mci at once again if I have to too. I am a pretty big person anyway, so maybe she took that into account too?
> 
> Any idea when you will get your treatment yet? Well go have a nice berry sorbet o.k.



DH thinks they said 139 for my original dose, I thought it was 159. I get my TSH tested tomorrow and if it's above 30, they will schedule it. I think it takes 1 day to get that TSH number back and then I don't think they have the dosage right there at the place I think they have to order it so I anticipate Weds. at the earliest. Honestly I'm just kind of BORED with all this at the moment, isn't that silly? I should be worried about the cancer I suppose and whether the RAI is going to take this time but I'm just so DONE being on this stupid diet and not feeling like myself.


----------



## luvmarypoppins

mrsklamc said:


> DH thinks they said 139 for my original dose, I thought it was 159. I get my TSH tested tomorrow and if it's above 30, they will schedule it. I think it takes 1 day to get that TSH number back and then I don't think they have the dosage right there at the place I think they have to order it so I anticipate Weds. at the earliest. Honestly I'm just kind of BORED with all this at the moment, isn't that silly? I should be worried about the cancer I suppose and whether the RAI is going to take this time but I'm just so DONE being on this stupid diet and not feeling like myself.



O.K. I am gonna be bored with ya, I am bored and sick and tired of changing this bandage twice a day and sick and tired of the surgeon being on vacation etc. I cant wait for Sept 7th to get here and he better have a good plan for me.

Oh here is an interesting little side note....when I got my original scan I still had the infection in my stomach (this was the stomach surgeon who told the rad. onc. to still give me the rai.She said I was going to be a :radiation risk" with the draining wound. . So draining wounds show up on the nuclear scans.


----------



## mrsklamc

Had the blood draw this morning, but just from how i feel i am fairly certain it will be high enough. This is my third time going hypo and it has been different every time..Is that strange or have others experienced that? For example, this time I seem to sometimes get especially anxious in the evening.

There are very few friends I would trust to cook for me on the LID but one begged to and oh is it AMAZING. She made chicken soup with chicken from trader joe's and no yolks..carrots, celery, non iodized salt...I don't remember if there was anything else but she wrote out all the ingredients for that, pork fajitas (except she ended up bringing them with bib lettuce to wrap them in because she couldn't find salt-free tortillas) and apple crisp. She is seriously my hero for the day.


----------



## Christine

mrsklamc said:


> Had the blood draw this morning, but just from how i feel i am fairly certain it will be high enough. This is my third time going hypo and it has been different every time..Is that strange or have others experienced that? For example, this time I seem to sometimes get especially anxious in the evening.
> 
> There are very few friends I would trust to cook for me on the LID but one begged to and oh is it AMAZING. She made chicken soup with chicken from trader joe's and no yolks..carrots, celery, non iodized salt...I don't remember if there was anything else but she wrote out all the ingredients for that, pork fajitas (except she ended up bringing them with bib lettuce to wrap them in because she couldn't find salt-free tortillas) and apple crisp. She is seriously my hero for the day.



That sounds delicious!!!  

Yes, everytime I went hypo it was different.  For me, it got worse each time.  And I'm sure you remember my posts back in June.  I was off my meds for 6 days and had some serious anxiety.  I felt all choked up like my throat was swollen and I couldn't swallow.  That happened to me also in 1998 but not till the VERY end.


----------



## luvmarypoppins

Micayla - Glad to hear you got the blood test, but sorry about your hypo issues. Cant comment as I am the thyrogen lady.

Wow, that is an amazing friend to cook for you. I felt like I couldnt trust anyone but I was thinking of asking some lady from my church about the home made applesauce she makes but I didnt.  I think I would like the apple crisp too!!

Wishing you all the best and I hope your dh doesnt have to go to jury duty or at least gets it postponed.

Hang in there!!


----------



## mrsklamc

Thank you!!

This particular friend is very unusual in terms of her food trustworthy-ness. She has a son with a rare allergy to a food dye and _she_ has SOMETHING that causes her to go into anaphylactic shock but they haven't been able to pinpoint what it is, so she definitely 'gets' food issues. She provided extremely detailed lists of what she put in everything, i.e. "No Yolks' noodles, ingredients:"


----------



## mrsklamc

OK so I can't remember what I told you guys on here but my endo's office just called and my TSH was 75 on Monday, but she's waiting for the results of a second Tg test just in case the cytomel messed with the TG level before she orders the radiation. Sigh.


----------



## Christine

mrsklamc said:


> OK so I can't remember what I told you guys on here but my endo's office just called and my TSH was 75 on Monday, but she's waiting for the results of a second Tg test just in case the cytomel messed with the TG level before she orders the radiation. Sigh.




Great news on the TSH.  The higher the better.  But, yeah, that stinks on the waiting for the Tg.


----------



## mrsklamc

Christine said:


> Great news on the TSH.  The higher the better.  But, yeah, that stinks on the waiting for the Tg.



The irony is, I did it to myself. She wasn't going to order the Tg and I asked if there was any chance the one cytomel I took mimicked Tg in the test. She doubted it but thought it made sense to check.


----------



## luvmarypoppins

Micayla - just sending you some happy thoughtsHang in there!! You are a tough cookie and we know you can do this.

I scheduled my blood test for next week. My endo has me on a 3 month schedule for the tests and a 6 month to see her.


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## mrsklamc

I am so depressed. Tg came back at 5.2. The RAI place doesn't have an opening until Wed at 8:30. So basically diet and no pills for 2 weeks! I feel like I'm going to lose it!


----------



## Christine

Oh, you poor thing.  The only "bright" side to this is that your TSH will be nice and high for the treatment--all the better.   Hopefully this will take care of it.  That's a shame they can't do it sooner.


----------



## mrsklamc

Christine said:


> Oh, you poor thing.  The only "bright" side to this is that your TSH will be nice and high for the treatment--all the better.   Hopefully this will take care of it.  That's a shame they can't do it sooner.



My regular dr's office nurse happened to call and I was just *sobbing* because I don't feel like I can do this for two more weeks. She is going to call around and see if she can find somewhere that can get me in, but surely if that were a possibility the endo's office would have tried it?


----------



## luvmarypoppins

My thoughts and prayers are with you. Praying for peace in the midst of this storm. Hang in there honey. 

I wish they could get it sooner for you too, maybe because of the holiday??


----------



## mrsklamc

it takes them a day to order it from the pharmacy i guess, and the nuclear med dr. isn't there tomorrow. I'm sure the holiday doesn't help. Although when i had my original dose in dec i had to stay of meds for a week and they are telling me I don't this time. I didn't talk to them but according to DH they don't really think whatever it is will show up on a scan anyway


----------



## Christine

mrsklamc said:


> it takes them a day to order it from the pharmacy i guess, and the nuclear med dr. isn't there tomorrow. I'm sure the holiday doesn't help. Although when i had my original dose in dec i had to stay of meds for a week and they are telling me I don't this time. I didn't talk to them but according to DH they don't really think whatever it is will show up on a scan anyway



You should be able to resume your meds 24-48 hours after you take the RAI.  There is a very good chance that something will show up on the post-ablative scan.  You had uptake initially with our RAI treatment before so there is no reason to think that what is leftover from that won't.  The problem with whatever is producing that Tg is that it is probably VERY small and/or it has become damaged from your previous treatments and is not uptaking iodine well.  The hope is that it will uptake enough from the massive dose to kill it off.


----------



## mrsklamc

Christine said:


> You should be able to resume your meds 24-48 hours after you take the RAI.  There is a very good chance that something will show up on the post-ablative scan.  You had uptake initially with our RAI treatment before so there is no reason to think that what is leftover from that won't.  The problem with whatever is producing that Tg is that it is probably VERY small and/or it has become damaged from your previous treatments and is not uptaking iodine well.  The hope is that it will uptake enough from the massive dose to kill it off.



I remember how shocked you were that they did a 'tracer' before my initial ablation and I will probably always wonder if I would still be dealing with this had they not. I am hopeful that the fact that the tracer being almost a month before the ablation dose will help this time.


----------



## Christine

Here are some posts from one of the online thyroid cancer support groups.  These are just "blurbs" regarding how to best deal with positive Tg yet clean scans.  Not sure that it really helps you with anything but thought you might find it interesting.



> Message # 3103
> > > "...
> > > It is sometimes appropriate to administer radioactive iodine treatment
> > > when the thyroglobulin level is elevated even though the diagnostic
> > > I-131 whole body scan is negative (clear). This should only be done
> > > when there is NO evidence of macroscopic tumor masses using
> > > non-contrast CT scans, ultrasounds, or MRI scans.
> > > It is also important to make sure that the scan is not
> > > falsely-negative, due to contamination from stable (non-radioactive)
> > > iodine from radiographic contrast dye, dietary iodine,
> > > iodine-containing medication (particularly amiodarone), or topical
> > > iodine (betadine, tincture of iodine, etc.)"
> > >
> > > Message # 6078
> > > "...
> > > Definition of Situation: Thyroid cancer patient (papillary or
> > > follicular,including their many variants) after a total thyroidectomy
> > > and surgical removal of evident local nodal metastases, who have had
> > > radioiodine ablation therapy and have had an effectively performed
> > > I-131 whole body scan (WBS) performed 5 months or more after the I-131
> > > ablation. This WBS appears negative, yet the stimulated
> > > thyroglobulin is above 0.4 ng/mL (may be a different cutoff for less
> > > sensitive thyroglobulin assays). An important caveat is that these
> > > criteria apply to WBSs performed using a hypothyroid preparation (TSH
> > > > 30) with a low iodine diet and the WBS uses a dose of at least 4 mCi
> > > I-131.
> > >
> > > Pathway A: The patient is prepared by hypothyroid preparation (TSH
> > > >30) and low iodine diet, then is given at least 150 mCi I-131
> > > therapy. A WBS is performed after the treatment (post-therapy WBS: 2
> > > days after treatment for my patients, others typically wait up to a
> > > week, longer times are not advised). If the post-therapy WBS shows
> > > iodine-avid tumor sites or a follow-up stimulated thyroglobulin
> > > (hypothyroid preparation) is significantly diminished, then this
> > > approach has shown itself to have been therapeutic and it may be
> > > repeated in 6 months to a year."
> > >


----------



## Christine

More:
------------------------------
That JUST happened to me,too! Clean scan, TG was 8.9. What a HUGE
disappointment. I did the PET scan, and it showed two 5mm lymph nodes. I'm SO
glad they did that so I know what the source is of the TG is. The endo said
that those nodes apparently don't take up iodine,and referred me to the surgeon.
The surgeon doesn't see a need to do anything about it at this time, but
re-evaluate again in a year with ultrasound.
Was your TG undetectable before going hypo? Mine was.

-----------------------------------


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## mrsklamc

Yes, thank you Chistine, that does help. It's the endo's assistant, not the nuclear med person, who is telling DH I would be able to go back on meds right away so maybe the nuclear med guy will have different instructions.

I keep meaning to go dig into a thyroid board and it's just hard to drag myself away from the DIS for whatever reason.

He says 'may be repeated in 6 months'- he means if necessary, right? He doesn't mean to do a 3rd ablation regardless?


----------



## mrsklamc

Christine said:


> More:
> ------------------------------
> That JUST happened to me,too! Clean scan, TG was 8.9. What a HUGE
> disappointment. I did the PET scan, and it showed two 5mm lymph nodes. I'm SO
> glad they did that so I know what the source is of the TG is. The endo said
> that those nodes apparently don't take up iodine,and referred me to the surgeon.
> The surgeon doesn't see a need to do anything about it at this time, but
> re-evaluate again in a year with ultrasound.
> Was your TG undetectable before going hypo? Mine was.
> 
> -----------------------------------



Wow this one really surprises me, for 2 reasons. 1) everyone seemed to act like it could be a GOOD thing that they didn't see a detectable source (at least to my face they acted that way ) mentioned that it could even be a matter of a few cells and the RAI might just take care of it. 2) I am really surprised they didn't want to operate on this person, given the ability of cancer to spread on a cellular level, and the fact that they could 'see' something, even if it's small.


----------



## Christine

mrsklamc said:


> He says 'may be repeated in 6 months'- he means if necessary, right? He doesn't mean to do a 3rd ablation regardless?



Correct!

And it probably would do you some good to join the Thyca online group or the other one moderated by Dr. Ain.  As I was just scrolling through them, I realized what a wealth of information is on there.  Not that you're really looking for help but I bet if you joined up and posted your current situation, you'd get a good number of people in your same situation coming on to tell their experiences.  These stories are helpful as you navigate your own treatment and if something sounds "off" or "lacking" in what is being done to you, you can question your doctors.


----------



## Christine

mrsklamc said:


> Wow this one really surprises me, for 2 reasons. 1) everyone seemed to act like it could be a GOOD thing that they didn't see a detectable source (at least to my face they acted that way ) mentioned that it could even be a matter of a few cells and the RAI might just take care of it. 2) I am really surprised they didn't want to operate on this person, given the ability of cancer to spread on a cellular level, and the fact that they could 'see' something, even if it's small.



That's why reading those sites is great--you would be amazed at the what people go through.  I think in further reading that person's e-mail chain, there was evidence that the surgeon didn't quite know how to get at it.  They don't like to operate if they don't think they can get at something palpable.

What surprised me the most about these posts (and I haven't read over there in awhile) is that in the thyroid cancer world they are taking more advantage of PET scans, MRIs etc in these instances.  They were not doing that 10 years ago.


----------



## mrsklamc

Yes I will probably do that- though I have great news, the endo's office called back and got me in a different facility for tomorrow- but she re-iterated that they don't intend to do a follow up scan which still seems bizarre. but I'm kind of at a point where I just don't care for right now, i just want it to be over. I know that's not the right attitude but I feel like I just can't DO this any more.


----------



## mrsklamc

Christine is right as usual. Med. assistant called back to say they will do a scan a week after.


----------



## Christine

mrsklamc said:


> Christine is right as usual. Med. assistant called back to say they will do a scan a week after.



Glad to here that!  So you are on the road to this being over with!


----------



## luvmarypoppins

I am SO happy that you can go tomm. Micayla. Wishing you all the best.


----------



## mrsklamc

200 was my dose this time. Feel bad bexause my family keeps calling and they  mean well but I am Not up to talking on the phone and they just don't understand.


----------



## mrsklamc

Ok WOW! my saliva glands are freaking out already for the first time in a long time and i just had my dose an hour and half ago!!!! Anyone else have that happen?!?! (maybe that's where the residual tissue is?) 

Also noted a headline that Jennifer Grey was treated for thyroid cancer, if that's of interest to anyone.


----------



## Christine

mrsklamc said:


> Ok WOW! my saliva glands are freaking out already for the first time in a long time and i just had my dose an hour and half ago!!!! Anyone else have that happen?!?! (maybe that's where the residual tissue is?)
> 
> Also noted a headline that Jennifer Grey was treated for thyroid cancer, if that's of interest to anyone.



Nah, you don't have residual tissue there.  It's just getting into REAL good.  Just make sure to keep eating and drinking so you can keep them working.  You don't have to go overboard with sour stuff but just keep the saliva flowing.


----------



## mrsklamc

Christine said:


> Nah, you don't have residual tissue there.  It's just getting into REAL good.  Just make sure to keep eating and drinking so you can keep them working.  You don't have to go overboard with sour stuff but just keep the saliva flowing.



OK good to know. I was also glad they upped the dosage- one thing I read on Dr.Ain's board he mentioned was people using repetitive low dosage and then it not working. Thanks for encouraging me to check that out.


----------



## luvmarypoppins

Glad to hear things are rolling right along for you Micayla. Hmm, what do you and I have in common now, well 200 mci of course. (sorry my cancer humor is strange at times).

I would forget lemon drops and go for some jolly ranchers

Can you text your family if you dont feel like talking?

That 200 should knock the crap out of your cancer. My biggest problem was with the digestive issues, as christine posted, the radiation gastritis etc.I also just didnt feel too hungry all week.

Hang in there, you are doing great!!


----------



## mrsklamc

luvmarypoppins said:


> Glad to hear things are rolling right along for you Micayla. Hmm, what do you and I have in common now, well 200 mci of course. (sorry my cancer humor is strange at times).
> 
> I would forget lemon drops and go for some jolly ranchers
> 
> Can you text your family if you dont feel like talking?
> 
> That 200 should knock the crap out of your cancer. My biggest problem was with the digestive issues, as christine posted, the radiation gastritis etc.I also just didnt feel too hungry all week.
> 
> Hang in there, you are doing great!!



Funny you should mention- I was so sick of lemon drops after last time that I did go straight to Jolly Ranchers. I learned last night on Dr.Ain's website that he would have started with 200 mci for cancer with my particular spread,and also that according to him I should never have had an iodine CT scan as part of the diagnosis process from my GP. Oh well, I guess. Coulda, woulda, shoulda.

I'm either letting DH talk to family, or texting them, with the exception of my grandma- I texted my sister and asked her to call grandma. 

They did make me sign something acknowledging that I knew this might not get rid of all thyroid tissue. They also verbally went over precautions and made me sign them no less than 3 separate times. I sorta preferred the other facility- but then I remembered that what I really preferred at this point was to GET IT OVERWITH. Follow up scan is Friday at 8 AM. No drugs or going off the LID until after that- which is a pity because Dr.Ain also doesn't feel that's necessary, but what can you do? Overall I like my dr. a lot and I was lucky to get in to see her so I better do what she says.


----------



## luvmarypoppins

I  my endo too. But there is no way she decides about radiation etc. Only the radiation oncologist does that here. 

My endo does the blood tests and orders the sono etc.

Here on the cancer team, everyone has a well defined role. I also picked this endo because she does the fine needle biopsies herself so I would not have  the surgeon have to do it, but I know he would do it too. 

And speaking of endos..I made my blood test for this tues, before my stomach surgeon visit and depending if he wants to do surgery or not I will see the endo the next week (the surgeon would only operate on me on a thurs. and that is when I have the endo visit. Oh well, we will see what happens. Never a dull moment. 

My gp is a clueless dope. I dont know why I go to this guy. He didnt even know to refer me to the univ. hosp. I had to do all the research, calling etc myself. There really isint much choice of decent gp's around here. 

I guess I could go on and on...well my dh is away in New Zealand right now and he is coming back mon. I am dealing with the non hurricaine here and he was dealing with the 7.5 earthquake 300 miles away. Both are amouting to a bunch of nothing so far.

So if you still have to do the lid, I would probably stick to stuff like mashed potatoes, the chicken soup with no yolks etc, roast chicken, nothing spicy for sure. 

Hang in there!! Blessings to you always. My prayers are with you.


----------



## Christine

mrsklamc said:


> Funny you should mention- I was so sick of lemon drops after last time that I did go straight to Jolly Ranchers. *I learned last night on Dr.Ain's website that he would have started with 200 mci for cancer with my particular spread,and also that according to him I should never have had an iodine CT scan as part of the diagnosis process from my GP.* Oh well, I guess. Coulda, woulda, shoulda.
> 
> I'm either letting DH talk to family, or texting them, with the exception of my grandma- I texted my sister and asked her to call grandma.
> 
> They did make me sign something acknowledging that I knew this might not get rid of all thyroid tissue. They also verbally went over precautions and made me sign them no less than 3 separate times. I sorta preferred the other facility- but then I remembered that what I really preferred at this point was to GET IT OVERWITH. Follow up scan is Friday at 8 AM. No drugs or going off the LID until after that- which is a pity because Dr.Ain also doesn't feel that's necessary, but what can you do? Overall I like my dr. a lot and I was lucky to get in to see her so I better do what she says.



Geez, I didn't realize that about the CT scan--that you had one.  I can't remember where I read this (probably Dr. Ain) but if he finds out you have had one, he will wait 6 months before he treats.  I am BETTING this affected your uptake on the first treatment.  While you can feel pissed about that, you can also take some comfort in that too.  This time it will probably work.

I think I mentioned that my first few months of having thyroid cancer, I am convinced I was improperly treated which resulted in my successive large dose treatments.  If I think about it, I get really mad.  But I'm not too hard on myself because in 1995, there was barely the internet much less a thyroid cancer support group guiding me on the proper protocols.

Now I try to read up so that if I get into trouble again, I won't get mistreated.

I'm glad you are reading Dr. Ain's site.  He really is one of THE top thyroid oncologists in the United States.  I think it is super that he gives so much of his time.  There are a few people on the administrative area of Thyca.org that don't care for him (or so I've heard).  I think there were some past clashes as you can imagine but I think his information is spot on.  I had the opportunity to hear him speak at one of the earlier thyroid cancer conventions (held in DC) and it was just so informative.


----------



## mrsklamc

Christine said:


> Geez, I didn't realize that about the CT scan--that you had one.  I can't remember where I read this (probably Dr. Ain) but if he finds out you have had one, he will wait 6 months before he treats.  I am BETTING this affected your uptake on the first treatment.  While you can feel pissed about that, you can also take some comfort in that too.  This time it will probably work.
> 
> I think I mentioned that my first few months of having thyroid cancer, I am convinced I was improperly treated which resulted in my successive large dose treatments.  If I think about it, I get really mad.  But I'm not too hard on myself because in 1995, there was barely the internet much less a thyroid cancer support group guiding me on the proper protocols.
> 
> Now I try to read up so that if I get into trouble again, I won't get mistreated.
> 
> I'm glad you are reading Dr. Ain's site.  He really is one of THE top thyroid oncologists in the United States.  I think it is super that he gives so much of his time.  There are a few people on the administrative area of Thyca.org that don't care for him (or so I've heard).  I think there were some past clashes as you can imagine but I think his information is spot on.  I had the opportunity to hear him speak at one of the earlier thyroid cancer conventions (held in DC) and it was just so informative.



Yeah he mentioned several times that, for example, he provided the original LID guidelines and they have since been, um, modified. I did have a contrast CT and as Dr.Ain said, I can't think why. Although, I suppose it makes my GP feel that he 'diagnosed' my cancer. I don't know if I told this story or not but he called with the CT results when I was driving to my first appt. with my awesome ENT and told me I had cancer, so I walk into my first appointment with her just bawling, and she says "Well THAT's premature. No one knows what's in there until we do a biopsy." And of course, it DID turn out to be cancer, but that was exactly what I needed to hear at the time.


----------



## mrsklamc

Wow.wow.wow. Those 40 mci make a huge amount of difference. Last time I didn't notice a loss of taste until I went off the LID. Guess what started already?


----------



## luvmarypoppins

O.K. I just read Dr. Akins stuff and I am "enlightened"

1. He really doesnt talk about columnar cell stuff. I wish he would have.

2. He did say about no less than 200 mci for the agressive variants, so I am  about that. 

3. Doesnt seem he is a big fan of thyrogen. Said its only for old people and kidney compromised pts. Well I think my kidneys are not too great. I dont even want to go there with that. He said with the diet and thyrogen "many" patients will have good results?.I followed that diet to the letter and then some.

4. Said lots about no iodine in tests etc. All I can say is thank God I held my ground when I had the bowel obstruction and was telling them no way to use betadine on me etc. And thank God I was so sick before the surgery that they didnt use dye with the ct scan I had before they rushed me into surgery.
Because 7 weeks after that I had the rai.

5. He does talk alot of tall cell (dischick, an interesting read for you).

Oh and I see the thy ca meeting is in Dallas in Oct. Since I used to live there I would love to go to that but with all the pain I am having in my stomach, doubt that would be possible. I have a friend there whos friend has follicular and has been to MD Anderson. I am going to ask if she is going. If she is I want to see if she can get some columnar cell info for me.

And lastly...september is thyroid cancer awareness month. My hospital is doing SQUAT!!. I am thinking of sending a little blurb to the hosp. president. Here goes the rebel!! I will also enlighten the endo of this when I see her too.


----------



## Christine

luvmarypoppins said:


> 3. Doesnt seem he is a big fan of thyrogen. Said its only for old people and kidney compromised pts. Well I think my kidneys are not too great. I dont even want to go there with that. He said with the diet and thyrogen "many" patients will have good results?.I followed that diet to the letter and then some.



luvmarypoppins--

Are Dr. Ain's comments/thoughts on Thyrogen recent (I'll have to go in and search--I think it's difficult to read old posts on Yahoo Groups)?  I know that shortly after Thyrogen made its debut, he and others preferred "old fashioned" Synthroid withdraw.  I know, even still, study after study proves withdrawal to give the superior scan and treatment, but I *thought* the medical community had lightened up on it a bit.  I think Dr. Ain's preference is that you do medicine withdraw on the first few scans/treatments as long as you are healthy.  And THEN, when clear, switch over to Thyrogen.  Is that what you got out of it?


----------



## mrsklamc

luvmarypoppins said:


> And lastly...september is thyroid cancer awareness month.



DH says- we're _aware_ of thyroid cancer. Can we do something else now? Poor guy is so tired of this. I think it's worse for him than me cause he wants to 'fix it' so badly.


----------



## luvmarypoppins

Micayla - how are you feeling today?

Christine - I just read his one page thing with alot of q and a. This was not the yahoo group thing.

I did read an interesting study they did in france. Took 80 patients. Half med withdrawl and half thyrogen before rai. They used blood, urine and tissue samples. It showed that the rai stayed in the body longer with the withdrawl group, HOWEVER..it showed that the half life in the tissue remmnent was longer with the thyrogen group. My dh actually asked the rad. onc. something about the half life etc. etc. She said she couldnt answer him as she thinks in medical terms and my dh was asking something scientific (figure I am married to a scientific geek). He has worked with radiation before so hence his question. Oh well..I am sure other studies show other things. I guess I was interested in that. Also the thyca research grants are being given for research in medulllary (twice they thought I had that) and anaplastic. O.K. I know they need alot of help, hmm, what about the columnar cell?? I feel like a research orphan

My blood tests are tues. We will see what the numbers say.


----------



## mrsklamc

luvmarypoppins said:


> Micayla - how are you feeling today?
> 
> My blood tests are tues. We will see what the numbers say.



Am feeling somewhat better today; dry mouth and and bad taste in my mouth...hoping there's no permanent damage in that regard. 

At least I can see the light at the end of the tunnel though. If I have tastebuds on Friday I know just what I'm having too...have you seen the Applebees commercials for provolone stuffed meatballs? 

Is it your Thyroglobulin you are having tested Tuesday?


----------



## luvmarypoppins

mrsklamc said:


> Am feeling somewhat better today; dry mouth and and bad taste in my mouth...hoping there's no permanent damage in that regard.
> 
> At least I can see the light at the end of the tunnel though. If I have tastebuds on Friday I know just what I'm having too...have you seen the Applebees commercials for provolone stuffed meatballs?
> 
> Is it your Thyroglobulin you are having tested Tuesday?



According to the order I am suppose to have:
OH-Vit D
Comp. Metabolic Panel
Quantitative Thyroglobulin
Total T3
TSH
T4

I think I usually get those 6 every 3 months.  I think its usually 3 tubes of blood. I always ask them to butterfly me as my veins are so bad.So its the blood test and then off to the surgeon today for me.

You are in the home stretch, hang in there.  Go Micayla (O.K. you have to put up with my strange cancer humor, sorry)


----------



## mrsklamc

Believe me, I get having strange cancer humor too...but I don't even know what some of those tests are!! Wow!

Boy being hypo sure is weird. I slept practically all day yesterday...and today I had maybe as much energy as when this all started! So strange. Just a couple more days...I still have SOME sense of taste so I'm just hoping it hangs on.


----------



## mrsklamc

Oh, and LuvMaryPoppins...I was thinking...Dr.Ain may seem anti thyrogen to you but on the flip side- I could be wrong but I have been hypo for a long time now and part of me is thinking 'do they have the slightest clue what kind of long term damage they are doing to my body by doing this?' (I don't know either but I just wonder if it even occurs to them. Doesn't seem like it can be good for you.)


----------



## luvmarypoppins

Micayla - are you actually going to have those meatballs on friday? My oldest ds usually goes to applebees but only when its half price appetizers etc. 

My blood tests went welll yest. I made sure to expressly ask for the tech to do a butterfly on me. I could tell she was having a hard time understanding my voice yest. It wasnt good. So we will see what the endo says next week. Last time she told dh there was no way she was lowering my synthroid. I am going to ask her what she thinks about my columnar cell. She did mention before she thought it would come back in 3 years.  Wonder if she got any more patients. She goes to 2 hospitals. The other endos are just at the univ. hosp. only. There are 2 others who specialize in thyroid cancer.

I asked my bff in Texas if her friend who has follicular was going to the thy ca annual meeting. She said she didnt know, but she said SHE would be willing to go for me and get me the info I wanted. I just about cried when I read that e mail. I couldnt believe she would do that for me. 

And lastly, my stomach surgeon visit went well enough yest. He wants to leave well enough alone for right now. But said sometimes people have to live with these chronic things, Um. no I am not going to do that. If it gets bad again he better figure out some way to fix it. He said he doesnt want to do a ct scan because he says sometimes you see things that you might not want to, make you look more etc. when maybe you shouldnt? O.K. I am seeing him again 2 days after we get back from disney in dec. So I guess its wait and see, but Praise God I am not having an operation now.


----------



## Christine

luvmarypoppins said:


> I asked my bff in Texas if her friend who has follicular was going to the thy ca annual meeting. She said she didnt know, but she said SHE would be willing to go for me and get me the info I wanted. I just about cried when I read that e mail. I couldnt believe she would do that for me.



One day we all need to meet up at a thyroid cancer convention!!!


----------



## mrsklamc

luvmarypoppins said:


> Micayla - are you actually going to have those meatballs on friday? My oldest ds usually goes to applebees but only when its half price appetizers etc.
> 
> I asked my bff in Texas if her friend who has follicular was going to the thy ca annual meeting. She said she didnt know, but she said SHE would be willing to go for me and get me the info I wanted. I just about cried when I read that e mail. I couldnt believe she would do that for me.
> 
> So I guess its wait and see, but Praise God I am not having an operation now.



I think I might wait on the meatballs and see what my sense of taste is like. I just had a banana and the best I could tell my dh was that it was like a 'diet banana.' He said 'What does that mean?' 'It's like a banana- but not totally. Like a banana-lite.' That's the best I can do....I'm finally losing a little weight though. Anyway, long story short- that entree is 10.99 so I really want to try it but I think I'll be waiting until I can taste it at least! I'm going to give biscuits and gravy a shot instead I think.

It's good to have good friends. That is so sweet that she would go for you, and I am glad you don't have to have another operation. 

You talk about your strange cancer humor- they told me to wash everything from the first few days separately and I was just standing in front of my washer going 'Mom never taught me whether to use 'warm' or 'cold' water to get out radioactive material!'


----------



## mrsklamc

Christine said:


> One day we all need to meet up at a thyroid cancer convention!!!



Yes- one day when my treatments stop eating all my vacation time!


----------



## mrsklamc

Christine, I know you mentioned it but I can't find it-did you say you took pepcid and something else for post RAI gastritis?


----------



## luvmarypoppins

Micayla - your laundry joke 

O.K. Sending you a song (Think Annie here..tommorrow, tommorrow I love you tommorrow, you're only a day away!!

Wishing you all the best with your scan tomm.


----------



## mrsklamc

luvmarypoppins said:


> Micayla - your laundry joke
> 
> O.K. Sending you a song (Think Annie here..tommorrow, tommorrow I love you tommorrow, you're only a day away!!
> 
> Wishing you all the best with your scan tomm.



I'm not even sure what 'the best' is...I'm not sure if they want to be able to see it being knocked out,  or simply not find any Tg the next time they do a withdrawal blood test, because it was a small amount of tissue that just wasn't showing up on the scan.


----------



## Christine

mrsklamc said:


> Christine, I know you mentioned it but I can't find it-did you say you took pepcid and something else for post RAI gastritis?



Pepcid in the morning and evening and liquid Gaviscon four times a day.  Get the strongest Pepcid you can buy OTC.


----------



## Christine

mrsklamc said:


> I'm not even sure what 'the best' is...I'm not sure if they want to be able to see it being knocked out,  or simply not find any Tg the next time they do a withdrawal blood test, because it was a small amount of tissue that just wasn't showing up on the scan.



My opinion--it would be great if they could see something on that scan.


----------



## mrsklamc

Christine said:


> My opinion--it would be great if they could see something on that scan.



That's DH's opinion too- course he doesn't have nearly your expertise. 

Feels good to be back on meds- but I'm not feeling better almost instantly like last time, since I was SO hypo. They said to take both cytomel AND synthroid for 2 weeks. A dear friend made me chicken alfredo and we stopped by her house to pick it up and I walked in and right back out- my muscles were SO mad at me. Thanks everyone for being here and being such a great virtual support group! It helps so much to have folks who understand- even though the journey is different for everyone!


----------



## Christine

mrsklamc said:


> They said to take both cytomel AND synthroid for 2 weeks.




That's what I always did because my TSH was always well over 100 when I scanned.  I'm a fast riser.


----------



## mrsklamc

Ok so I got news back on my scan...Endo called, the first radiologist thought that some on the anterior scans indicated possible micro-metastases in my lungs. Endo disagrees, and consulted another radiologist who doubts that as well; although endo says even if that is what it is, recommended treatment would be 200 mci, which I already had. She's scheduling a Spect scan to be sure. She says metastases in the lungs would be very rare but the longer I do this the less 'rare' means to me.  

But they see no residual tissue in the neck so I don't know what it means if they don't see this in my lungs on the spect scan?Does that mean I have iodine resistant tissue in my neck?


----------



## Christine

mrsklamc said:


> Ok so I got news back on my scan...Endo called, the first radiologist thought that some on the anterior scans indicated possible micro-metastases in my lungs. Endo disagrees, and consulted another radiologist who doubts that as well; although endo says even if that is what it is, recommended treatment would be 200 mci, which I already had. She's scheduling a Spect scan to be sure. She says metastases in the lungs would be very rare but the longer I do this the less 'rare' means to me.
> 
> But they see no residual tissue in the neck so I don't know what it means if they don't see this in my lungs on the spect scan?Does that mean I have iodine resistant tissue in my neck?



Well, I've been wondering about you!!!

What is a Spect scan?  I do know someone who had it in the lungs and was treated a few times with 200 mci, so you are correct that, if it is there, you are on the right track.

I would say that if the lungs are ruled out and nothing shows up, it is is either soooooo soooooooo small in the lymph nodes as not to be seen or it is resistant to RAI.  I think even if it is very small but takes up iodine, it will be seen with the high dose treatment.

I will be very interested to hear what your endo has to say when everything is in.

I hope you are starting to feel better these days...


----------



## mrsklamc

I _am_ feeling much better but excited for my tastebuds to grow back!

This is everything I know about a spect scan:
http://www.mayoclinic.com/health/spect-scan/MY00233

It looks like this will tell them, for sure, whether it's in my lungs, or not. What do they do if it is iodine resistant? Wait til they can see it and then do targeted radiation?


----------



## Christine

mrsklamc said:


> I _am_ feeling much better but excited for my tastebuds to grow back!
> 
> This is everything I know about a spect scan:
> http://www.mayoclinic.com/health/spect-scan/MY00233
> 
> It looks like this will tell them, for sure, whether it's in my lungs, or not. What do they do if it is iodine resistant? Wait til they can see it and then do targeted radiation?



It sounds like that 3-D scan of the heart that Oprah and Gayle had a few years ago.

I guess if you are iodine resistant they do have to wait to find it and then go after it by other means.

Have you read any more on Dr. Ain's Yahoo group's board.  I wonder if any of the iodine-resistant patients have posted their treatments?  The board is a few years old so it would probably take some time to go through them.


----------



## luvmarypoppins

Micayla

Sorry to hear about your little "bump" in the road on the journey.

That spect test sounds pretty definitive, so its good to see your endo is on top of things. When are you having it?

Sending you lots of prayers, good thoughts and wishes.

Hang in there...and did you have the meatballs yet? I saw an add for them and thought of you


----------



## luvmarypoppins

Yest. I went to the endo. I also got a resident since its affiliated with the teaching univ. hosp. She was sweet and nice as well. Good personality to handle all us thyroid ladies.

The endo said my blood tests were good so PTL!! But the bone scan was not good and she wants me to have an iv infusion of reclast. Also my bp was not good, so she is upping the dose of that med, and then she wants me to see a cardiologist because of the synthroid levels so high and also my family history, and then she wants a neck ultrasound. I walked out of there with so many papers etc. my head was spinning. Glad dh was with me.

I also asked about getting a copy of my pathology report. Finally did. Yeah!! I think she mis stated something at first. The thyroid tumor itself was 12 cm and then the tumor I had on the L side of my neck was another 5 cm itself. Wowsa thats a whole lotta cancer for sure!!

Now she wants me on a 6 month sono schedule, 4 month blood test and 4 months of seeing her, it was originally 6 months seeing her and now she is switching it back to more. I also see the rad. onc. in nov.


----------



## mrsklamc

Sorry, I didn't see your post earlier! Had the spect scan Wednesday...haven't heard anything yet. 

Haven't had the meatballs yet- still no real sense of taste.  Oh well. It seems to be good for the number on the scale! 

I am glad you have good folks taking care of you!

Christine- I haven't been back on Dr.Ain's board very much- I am waiting to see what they say so I can narrow down the search terms. LOTS of info there!


----------



## Christine

I was just reading the latest issue of Self magazine last night.  They interviewed Sophia Vergara who plays Gloria on Modern Family and she said that she had thyroid cancer many years ago.  Interesting!  You certainly cannot see HER scar!


----------



## mrsklamc

So my endo just called. The nuclear med guy they had read my spect scan saw "nothing in my lungs to suggest metastatic disease!

I asked if that meant I had iodine resistant tissue. She said not necessarily, it just might be very small....and that the latest data shows the first dose is still working up to a year. A little part of me was thinking, can we have gotten that memo a couple months ago?  But I will take good news as I get it!


----------



## Christine

mrsklamc said:


> So my endo just called. The nuclear med guy they had read my spect scan saw "nothing in my lungs to suggest metastatic disease!
> 
> I asked if that meant I had iodine resistant tissue. She said not necessarily, it just might be very small....and that the latest data shows the first dose is still working up to a year. A little part of me was thinking, can we have gotten that memo a couple months ago?  But I will take good news as I get it!



I think that's great news.  So your NEXT round of testing (a year?) will give you some more definitive answers.

Now just sit back and enjoy the next year!


----------



## luvmarypoppins

Oh Micayla, I am SOOOO Happy for you.!!!!

Its time to  celebrate.

Just keep letting the rai do its thing.My rad. onc. said something like its dead, but it just doesnt know its dead yet (referring to the remmnant. She said it would take up to a year for it to be gone. 

Blessings to you always.


----------



## es45

mrsklamc said:


> So my endo just called. The nuclear med guy they had read my spect scan saw "nothing in my lungs to suggest metastatic disease!
> 
> I asked if that meant I had iodine resistant tissue. She said not necessarily, it just might be very small....and that the latest data shows the first dose is still working up to a year. A little part of me was thinking, can we have gotten that memo a couple months ago?  But I will take good news as I get it!



Great news!


----------



## luvmarypoppins

Well my bff in texas asked me about the thy ca conference again. I cant believe she would still do that for me.

I printed out the list of talks. Has anyone seen it? Really I dont want to "bore" her listening to all this plus its a hike for her to get there and I would want to pay her registration fee etc. 

My one goal was to find out stuff about, of course, my rare variant. Well there is only ONE workshop/talk etc. on the rare variants. Hmm, is it so rare there is not any info etc? 

Just wondering if anyone has looked at the program of talks etc. If you did what would you want to listen to yourself, etc.etc. 

I would feel bad asking her to go just to listen to one talk, but her friend, who has follicular and has distantly spread - spine etc.  and has been to md anderson might want to go, she didnt ask her yet. I would also feel bad if she dragged that girl there because she said she takes morphine for the pain all the time etc. 

Any opinions, thinking of you Christine and Micayla and es.


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## mrsklamc

No, I've not looked, just because I knew I wouldn't be able to go.


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## luvmarypoppins

So how does this sound?

Friday oct 15th:

9:45-10:45 Open Mike Survivors/caregivers roundtable (This would only be of interest to her friend I think. These are the only sessions then.

10:50 - 12:00 pm - Session 126 - Understanding Variants of Differentiated Thyroid Cancer (Hurthle, Tall Cell, Insular, Columnar, etc. ) and their managemet issues. (THIS is the ONE I really want!!)

12:15-1:00 - Lunch and Learn Roundtables, Bring your own lunch?

Session 131 - The Thyrogen Story: users, Benefits, Challenges, and Limited Access (You know I am biased about this one too!!)

1:15-2:25

Session 143 - Surgical Treatment of Thyroid cancer - I dont really care about this. Maybe she could actually go for lunch. The only thing I would be interested in hearing is about a neck dissection on both sides, since that could possibley happen to me in the future.

2:40 - 3:50 - 153 Treatment Options for TargetedTherapies for Advanced Cancers, Including what Patients can expect from these treatmets and what they should look for in pursuing Care (This would be for her friend)

4:05 - 5:15 - Long Term Management of Differentiated Thyroid Cancer.

There are classes on sat. that would be o.k. if that is the only day she could go. I will type that later and ask your opinions too much typing right now.


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## mrsklamc

I agree with your choices....down to not being very interested in surgery. Hoping to be done with that!


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## Christine

luvmarypoppins said:


> So how does this sound?
> 
> Friday oct 15th:
> 
> 9:45-10:45 Open Mike Survivors/caregivers roundtable (This would only be of interest to her friend I think. These are the only sessions then.
> 
> 10:50 - 12:00 pm - Session 126 - Understanding Variants of Differentiated Thyroid Cancer (Hurthle, Tall Cell, Insular, Columnar, etc. ) and their managemet issues. (THIS is the ONE I really want!!)
> 
> 12:15-1:00 - Lunch and Learn Roundtables, Bring your own lunch?
> 
> Session 131 - The Thyrogen Story: users, Benefits, Challenges, and Limited Access (You know I am biased about this one too!!)
> 
> 1:15-2:25
> 
> Session 143 - Surgical Treatment of Thyroid cancer - I dont really care about this. Maybe she could actually go for lunch. The only thing I would be interested in hearing is about a neck dissection on both sides, since that could possibley happen to me in the future.
> 
> 2:40 - 3:50 - 153 Treatment Options for TargetedTherapies for Advanced Cancers, Including what Patients can expect from these treatmets and what they should look for in pursuing Care (This would be for her friend)
> 
> 4:05 - 5:15 - Long Term Management of Differentiated Thyroid Cancer.
> 
> There are classes on sat. that would be o.k. if that is the only day she could go. I will type that later and ask your opinions too much typing right now.



Sounds good.  If I get a chance I might take a look at the whole agenda and see what looks good.  I work in a government financial position and we are closing out the fiscal year tonight.  This week has been tough!


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## luvmarypoppins

Well its october and we all know what that means..National Thyroid Cancer Awareness Month

On my hospitals website is a little article by my rad. onc. She states..the survival rate for 5 years is 90-95%, extols thyrogen and says the hosp. is the only place in the county to get the rai. Dieticians help with the lid (yeah, I drove that girl Crazy  Said what signs to look for etc.  I guess it got listed on the bottom of all the other cancer awarenesses for the month of october, but heah, it was something. Last but not least kind of thing. 

I got some blood work done yest just for general stuff from my gp so we will see how that goes.

Christine - saw your thread about the ins. My endo charges $220 a visit. I only have a $30 co pay.


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## dischick4778

I have been reading all your posts but have been in denial lately.  Since I went back to work and things have been kind of normal it is easy to pretend like this thyroid thing never happened.  And then someone asks about the scar on my neck.  Back to reality.  

I had my first endo visit this past week.  She says the numbness I feel is due to lack of calcium.  She thinks the parathyroids have basically died off and apparently they control how your body absorbs calcium.  So now I am taking calcitriol (a prescription to help calcium absorbtion) along with 2,000 mg calcium every day.  Additionally she changed my synthroid dosage from 150 to 188.  I recently met someone taking natural thyroid.  Anyone have experience with this?  I asked my endo and she said it isn't controlled enough or studied enough for her to trust it.  But the woman I met who takes it swears by it.  I don't know much about it.  

Anyway, hope you are all feeling and doing well.


----------



## es45

dischick4778 said:


> I have been reading all your posts but have been in denial lately.  Since I went back to work and things have been kind of normal it is easy to pretend like this thyroid thing never happened.  And then someone asks about the scar on my neck.  Back to reality.
> 
> I had my first endo visit this past week.  She says the numbness I feel is due to lack of calcium.  She thinks the parathyroids have basically died off and apparently they control how your body absorbs calcium.  So now I am taking calcitriol (a prescription to help calcium absorbtion) along with 2,000 mg calcium every day.  Additionally she changed my synthroid dosage from 150 to 188.  I recently met someone taking natural thyroid.  Anyone have experience with this?  I asked my endo and she said it isn't controlled enough or studied enough for her to trust it.  But the woman I met who takes it swears by it.  I don't know much about it.
> 
> Anyway, hope you are all feeling and doing well.



What are the specifics of the numbness? 

As for natural thyroid, I began taking Armour a few months ago. I was on synthetic for 20 years before making the switch. Early on, the synthetic was fine; the last 5-8 years it been very difficult to maintain my levels. For me, taking Armour was an incredible change, my overwhelming fatigue is reduced, my mind is clearer. The change was so marked that my DH sent a message to my endo pleading with her not to take me off of it after the first month. I've read that there were some problems with availability, but I've yet to experience that. 

Please research making such a switch carefully because as with any medication, there are advantages and disadvantages to consider.


----------



## Christine

luvmarypoppins said:


> Christine - saw your thread about the ins. My endo charges $220 a visit. I only have a $30 co pay.



That post was actually in regards to my son's pediatric pulmonologist.  I just stated that it was for me because I didn't feel like going into details about who/what it was for since most post was already lengthy!

Get this--my endo charges $90 per visit.  $25.64 is not covered.  The "considered balance" is $64.36 so I only pay 20% of that.  At $12.87, that visit is a DEAL!!!!!

On the other hand, my son's pulmonologist is now charging me $367 for the visit which does not include the breathing tests.  They no longer participates so I have to pay 20% of the allowable charges and then pay the non-contract (non-allowable charges).  Every visit will cost me $223.00.


----------



## Christine

dischick4778 said:


> I recently met someone taking natural thyroid.  Anyone have experience with this?  I asked my endo and she said it isn't controlled enough or studied enough for her to trust it.  But the woman I met who takes it swears by it.  I don't know much about it.
> 
> Anyway, hope you are all feeling and doing well.



If you have had thyroid cancer, it will be *very* difficult to convince an endo who treats thyroid cancer to give you Armour Thyroid (natural thyroid medication).  People being treated for hypothyroidism often have doctors who will allow them to play around with it.  Since thyroid cancer and your TSH needs to be so tightly controlled, most endos are totally against using Armour.

Simplified, it is made from bovine thyroid glands.  It is done in a lab so I'm not trying to make it sound like some farmer is mixing it up in his barn.

Most endos believe that since it is make from the anatomy of a living organism, that the dosage cannot be titrated properly.  

What it has going for it, is it contains T3 which Synthroid and similar meds do not.  Most people do not need T3 as your body will convert it from T4.  There is a small subset of the population who does not convert T4 to T3 and it will be very evident when you have your thyroid panels done.  If you T3 is in the normal range then you are converting.

I have referenced Dr. Ain's listserv before to mrsklamc and you may want to read up on this.  He is 100% against the use of Armour for various reasons and if he has a patient who is a non-converter, he will prescribe Cytomel (synthetic T3) to supplement the T4.  

I don't really have a feeling about it all but before you make a choice you should read both sides of the debate on this to see how you feel about Armour.  

If offered to me, I would probably try it and see how I felt.  However, some of the things about it (bovine in nature) kind of bother me.


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## dischick4778

I have been experiencing numbness ever since my surgery.  It started in my hands, but it also happens in my legs, back, and even face.  Usually it happens if I lean on my leg wrong or if I talk too much my face gets numb.  The blood work shows my calcium levels are very low.  The Dr. feels that I'm not absorbing it and that's why I get numb.  

Thanks for the advice on natural thyroid.  I really don't know much about it but am reading into it just to know everything I can.


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## mrsklamc

I am sorry to hear about your paras. 

My endo, who became an endo after having thyroid cancer herself, also would not recommend the 'natural' thyroid.


----------



## Christine

mrsklamc said:


> I am sorry to hear about your paras.
> 
> My endo, who became an endo after having thyroid cancer herself, also would not recommend the 'natural' thyroid.



My last endo also had thyroid cancer.  How convenient!!  He was very much opposed to Armour.  I haven't even discussed it with my new endo but I feel okay for the most part.  At any rate, dischick, it's not something I would try until well after surgery and diagnosis.  Gotta wait till everything else evens out, I think, before you start throwing in new thyroid meds.


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## luvmarypoppins

My psa of the day....if you are taking name brand synthroid make sure your endo writes daw on the script!! I had 2 scripts from her. One was older and I handed it in at the pharmacy and didnt notice it wasnt daw, so I also had the new one from last month. Thank heavens I noticed at her office she didnt write it. I had to wait for her to finish with the other patient and then she came to fix it. I guess she assumes that everyone wants generic etc.

I wrote an e mail to my friend about the conference. I didnt want to actually ask her to go etc. I just said, oh is your friend going etc? We will see what she says.

Dischick - sorry to hear about your paras too. Also wondering..how is your voice doing?? I also had to have my synthroid upped from the original post op dose. I started at 150 and now its 200. I am really hyper and emotional!! I know what you mean about the reality stuff. Sometimes I put it out of my mind until its another blood test, sono, endo or rad. onc. visit etc. Its almost 2 years and I have a hard time dealing with it. I am glad I have my faith to bring me alot of comfort. Hang in there!


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## mrsklamc

My brain is still having little 'glitches.' DH says it happened last time too but I don't remember.

I hope it's temporary.


----------



## Christine

mrsklamc said:


> My brain is still having little 'glitches.' DH says it happened last time too but I don't remember.
> 
> I hope it's temporary.



Yep, it is.  Takes a while to get back!


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## dischick4778

luvmarypoppins said:


> My psa of the day....if you are taking name brand synthroid make sure your endo writes daw on the script!! I had 2 scripts from her. One was older and I handed it in at the pharmacy and didnt notice it wasnt daw, so I also had the new one from last month. Thank heavens I noticed at her office she didnt write it. I had to wait for her to finish with the other patient and then she came to fix it. I guess she assumes that everyone wants generic etc.
> 
> I wrote an e mail to my friend about the conference. I didnt want to actually ask her to go etc. I just said, oh is your friend going etc? We will see what she says.
> 
> Dischick - sorry to hear about your paras too. Also wondering..how is your voice doing?? I also had to have my synthroid upped from the original post op dose. I started at 150 and now its 200. I am really hyper and emotional!! I know what you mean about the reality stuff. Sometimes I put it out of my mind until its another blood test, sono, endo or rad. onc. visit etc. Its almost 2 years and I have a hard time dealing with it. I am glad I have my faith to bring me alot of comfort. Hang in there!



Thanks for asking!  My voice is still not great.  It is difficult because my job requires me to do a lot of presentations and now I cannot do them without a mic.  I'm also noticing it's hard in social situations.  We had a wedding last week and I literally said nothing the whole night.  Anytime I tried to talk no one could hear me, so why bother.  At restaurants it challenging too.  And people who don't know what happened to me ask if I have a cold or soar throat.  What do I say - no I had cancer?  They really don't want to hear that.  

I don't know if it has just been a busy week or what, but ever since my dosage was upped I feel more tired.  It's only been one week, but I hope this feeling doesn't last.  

Any luck with your friend going to the conference?


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## luvmarypoppins

Well my friend couldnt go to the conference , well she could but not the time that talk I wanted the info was on. Oh well and her friend was not going even though her dr. from md anderson was going to be there. Wow if I lived like over 5 hours from my dr. I would def. go like 45 min. to see him etc. But I got a little introduction to her. She said her cancer is not "cureable".

Just wondring if your surgeon or oncologist has stressed "cureable" versus "treatable". I get mixed messages. Surgeon says I am good for next 10 years. Oncologist, give her usual - its agressive so we will treat it agressively and endo says it was coming back in 3 years?

Also when do you all get regular blood work done, not thyroid? I just got it done like 2 weeks ago and they still havent called me. I guess I will give them a call. This goes along with my post about when is time to get a new dr. on the comm. board.


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## mrsklamc

It probably didn't occur to me at the time, but I'm pretty sure no one has ever used the word 'cure.'

My annual physical is when I get my bloodwork done; I schedule it around my birthday every year, makes it easy to remember. I don't think it's ever taken two weeks to come back, but I don't really notice because I'm not as anxious for the answers as I am with my thyroid stuff.


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## mushu78

I do not have any thyroid conditions but I know ALOT of people who do.  I've worked with an endocrinologist for the last 12 years.

In reading a few of the comments I notice some common issues often commented on so I thought I would join to tell you what we coucil patients:

1) Brand name Synthyroid or Levoxyl is critical (_particularly_ for thyroid cancer patients).  
Reason:  *ALL* generics have a 20% leeway as to how much medication is in any individual tablet.  When you are dealing with thyroid medications that is TOO much.  For one thing the doses are very close together (25;50;75;88;100; 112;125;137; 150; 175; and 200).  Your acceptable TSH range is very small (for all patients).   What does this mean?  If you were on 100 mg of Synthyroid or Levoxyl, on generics you could be getting anywhere from 80 to 120 mg.  (Which,of course, nearly spans 4 doses).  This results in people feeling fatigue one day and maybe having heart pap another day.  For the longest time the FDA wouldn't allow generic thyroid medications to be produce (because of the above situiation not because of patent).  For some reason, only known to themselves they now allow it (though somewhere on their website you can find some clause stating most patients should be on brand....it's hard to find though).

2) Calcium and Iron (and multi-vitamins because they contain calcium and iron) must be taken 4 hours away from the thyroid hormone (Synthyroid or Levoxyl).
Reason:  These two things will bind with the thyroid hormone and inhibit its absorption.  

3) Most endocrinologists follow a TSH range of 0.3/4 - 2.5.  The old range used to be 5 (although I did see a lab with the upper limit set at 9--- what they were thinking I have NO CLUE.)  For anyone with hypothyroid symptoms and levels in the 3,4,5 range who have doctors that say that is normal can go onto the American Thyroid Association website and do a search regarding referance ranges.  It will provide you with information of 2.5 vs. 5 as the upper limit.  
Reasoning:  They changed the limit because they were noticing that people complaining of syptoms in the 3-5 range eventually went higher, then requiring treatment.  Another reason was that when doing a study of normal ranges they noticed that most people that were "normal" fell somewhere in the one range.

4)  For those with thyroid cancer,  if you are having to have a recheck for reoccurance of your thyroid cancer and your doctor wants you to go off your medication six weeks before having the scan (again this is for rechecks) ask them about THYROGEN.  It is an injection that allows people in those circumstances to stay on their thyroid medicaiton.  In my area, MOST insurances will cover it (occasionally one won't). I do know of one person who paid for it out of pocket ($1900 I think) because her insurance wouldn't and she felt it was a small price to pay for not having to feel like crap for 3 months. (Six weeks off and then six weeks for the medication to take affect again after you restart it).

5) For women looking to get pregnant, it is critical that your thyroid be between the 0.3/4 - 2.5 range.  (For thyroid cancer patients you would have to ask your doctor what is the best range for you).  Healthy thyroid levels are critical in the first trimester for the health of the baby.

6)  Papillary thyroid carcinoma is THE most COMMON type of thyroid cancer.  It makes up 96% of all thyroid cancer cases.  It is also the MOST TREATABLE.  In general there are 3 types of thyroid cancer with 2 or 3 subtypes to some of the categories.  The RAREST form of thyroid cancer is the deadliest.  My boss (in 26 years of practice) has never seen this type.  

7) When having your thyroid removed surgically...the more experience a physician has the better.  Ideally you want a physician who has preformed more than 1,000 thyroid surgeries...this can be hard to find so again the more the better but at least 100-200.  Often people think that an Ear, Nose, Throat doctor is the best to do the surgery.  Not always (again depends on experience).  In terms of training, ENT docs usually only get 3 weeks training on thyroid surgeries in their entire training.  General surgeons spend at least 3 months.  It is also important to ask how many times they've been faced with complications from their surgeries (my personal philosphy is just because you done alot of them doesn't mean you can do it correctly....make sure they've done alot and have a good success rate).  
Reasoning:  Thyroid surgery can be tricky.  You have little glands that "straddle" the thyroid call the parathyroid that regulate your body's calcium.  These can be "stunned" during surgery which can result in great complications, it is also possible to accidently remove a portion of them (granted there are times when this can't be help no matter how great the surgeon).  P.S. An excellent surgeon can get away with minimal scarring.  

7) Synthroid and Levoxyl run pretty cheap.  (Also Levoxyl is shaped like a butterfly- which is trademarked so no one can copy it- and you can tell if you pharmiscist switched it on you).  In my area (Pacific Northwest) Levoxyl runs about $25-45 dollars for a 90 day supply at Costco.  Synthroid runs about $50-70 for 90 day supply at Costco (Dosing is what makes the price difference...the more popular a dose the cheaper it is).  Oh, at that's without insurance.

8) In my state (WA) a pharmacy is NOT required to tell you if the medication is cheaper than your copay.  With most medications they will tell you BUT, when it comes to thyroid medications, they often won't (I don't think they make money with brand name thyroid).  So if you are paying $30 copay for a 30 day supply at your local pharmacy....chances are (in WA) you are paying to much.  You do NOT have to go through your insurance (again in WA) if it cheaper to pay out of pocket...just pay out of pocket.

9) HAIR LOSS....
Something I notice many commenting on.  It can be a sign your thyroid is out of range or it could be because you changed your thyroid medication recently.  It will often take 2-3 months for the hair loss issue to settle down after a change in medication.  

Well have to go for now....Have errands to run.  These are just some of things that hopefully help someone out there.  

I almost forgot...
10)  For those of you who are waiting for test results after "reoccurance of cancer checks," (I notie some commented on the time it took for them to get their results)... it could be that your doctor doesn't have the results yet.  Often the test they are waiting on is a "thyroglobulin" level. That can take up to 5 days to come back here (and I live a fairly busy big city...smaller cities further out from big cities results may take longer.

P.S. Luvmarypoppins...what type of thyroid cancer do you have....I tried to find where you posted the name but all I could see was that you said it was rare.

P.P.S. Please excuse any spelling errors.  I rely too much on spellcheck these days and, unfortuately, this website uses one I don't have on my computer yet.


----------



## luvmarypoppins

mushu - I have papillary with columnar cell variant, stage 4.

Well I am going for an ultrasound Nov, 3rd and then Nov. 4th I am seeing the oncologist. Usually the endo orders the ultrasound and I think gives a copy to the oncologist. But since I dont see the endo until jan. I am going to ask the onc. if she can pull up the results etc. I dont know if it will even be read that fast, plus I am the onc. lst appt. the next day (early) so they might not have it etc. I guess I would like to know etc.

Micayla - does the ultasound hurt you? Asking because you had the neck dissection too. I think mine even hurts more since surgeon 2 had to cut out everything again to get to the jugular vein when I was dying. He told dh he went in there and kept "chopping" away till he found the bleeder so I guess I have ALOT of scar tissue. sigh, sigh.

My gp never callled about my blood tests. Tomm. will be 3 , yep count em, 3 weeks. I am calling tomm. to make an appt. as I need a med. I will make that appt. and I dont think I will go back to him after that. I am not even going to ask for my medical records. Everything I need is in my head. 

It will also be interesting to see what the eye dr. says about my constant tearing etc. I hope its not related to anything else etc. cancer wise)

Hope everyone is doing well. How goes the voice dischick?? Mine was bad tonight. Good as dh cousin called. I normally dont enjoy speaking to him. I told him dh was in Russia right now, so I got stuck talking to him, oh well.


----------



## mrsklamc

luvmarypoppins said:


> Micayla - does the ultasound hurt you? Asking because you had the neck dissection too. I think mine even hurts more since surgeon 2 had to cut out everything again to get to the jugular vein when I was dying. He told dh he went in there and kept "chopping" away till he found the bleeder so I guess I have ALOT of scar tissue. sigh, sigh.
> 
> 
> 
> It will also be interesting to see what the eye dr. says about my constant tearing etc. I hope its not related to anything else etc. cancer wise)



My ultrasounds do not hurt at all. Occasionally, I have a shooting pain that just lasts seconds- I think the nerves regenerating. She said they might regenerate for up to 18 months. Today is one year post-op.

I think I have heard that tearing can be caused by RAI? Same type of damage as the salivary glands?


----------



## luvmarypoppins

Actually the endo said the rai should have "dried out" my eyes and that is why she couldnt understand the tearing either. She thinks it might be a tear duct problem?


----------



## dischick4778

luvmarypoppins said:


> Hope everyone is doing well. How goes the voice dischick?? Mine was bad tonight. Good as dh cousin called. I normally dont enjoy speaking to him. I told him dh was in Russia right now, so I got stuck talking to him, oh well.



Voice is still pretty terrible.  Every day someone asks if I have a cold.  And does it hurt me to talk.  Which it doesn't, but it is becoming annoying to have to explain all the time.  I have been having troubles with my scar recently.  I have two areas that have swelled up a bit and I can't figure if it's infected or just my body rejecting stitches.  The last time I saw my surgeon he said it was possible that my body could reject a stitch and not to worry about it, but it doesn't look very nice.  Anyone else feel like it's always something.


----------



## mrsklamc

Does anyone know how much your weight has to change to affect your levels? Lost 8 pounds and the last few days I feel 'off'- kinda restless I guess. Today is 7 weeks back on my pills, and I've heard it takes 6 weeks to get up to your regular dose so I guess if I'm too hypo after the weight loss the timing makes sense. I called my endo's office today but they were out until Monday.


----------



## luvmarypoppins

Micayla - I heard about 6 weeks too. Just wanted to say..congrats on the weight loss. Stay away from the halloween candy!!

dischick - have you ever been scoped post surgery? If you were scoped pre surgery and they took pictures they should compare both of them. My surgeon showed them to me. It does take a while, so try not to get too frustrated. Maybe jpllly ranchers might help too etc.  I didnt have the stitch problem with my thyroid surgery but when I had my stomach problem in July the surgeon there told me my body might be rejecting a stitch too. I hope the swelling has gone down for you.

I am hoping all goes well with the sono and rad. onc. visit next week. I am feeling so tired too.


----------



## dischick4778

luvmarypoppins said:


> Micayla - I heard about 6 weeks too. Just wanted to say..congrats on the weight loss. Stay away from the halloween candy!!
> 
> dischick - have you ever been scoped post surgery? If you were scoped pre surgery and they took pictures they should compare both of them. My surgeon showed them to me. It does take a while, so try not to get too frustrated. Maybe jpllly ranchers might help too etc.  I didnt have the stitch problem with my thyroid surgery but when I had my stomach problem in July the surgeon there told me my body might be rejecting a stitch too. I hope the swelling has gone down for you.
> 
> I am hoping all goes well with the sono and rad. onc. visit next week. I am feeling so tired too.



I'm sorry I don't understand, what do you mean by scoped?  I have pics from the sono they did before my surgery showing the tumors.  The swelling is getting better.  One area has completed healed and the second area is getting smaller.  I can't wait for the whole thing to be healed.  Have any of you noticed a difference from being on the generic vs actual synthroid?  I have been so tired lately and I'm wondering if being on the generic is causing this.  

Good luck with your visit next week luvmarypoppins!


----------



## luvmarypoppins

dischick - I only take the name brand as I dont want to have those problems. My ins. wont pay for it since they will only cover the generic. Small price for me to pay to make sure I am at the same dose all the time with no fillers etc. I think I pay $25 for it a month.

On the scoping issue...did you ever have the laryngeal? scope. Its up your nose and down your vocal chords etc. They give you some spray to numb the back of your throat. Make you say ooh and ahh alot and watch your vocal chords move on a tv screen and print out pictures if they want to. This is how they can tell if your vocal chords were damaged during surgery, are bruised etc. etc. I have had so many of them, by both my ent surgeons. I think you should at least ask  your surgeon about it. I even had it done in the hosp. post op but usually I had it done in their office. and OT: Think your little guy is a cutie!!


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## dischick4778

Thanks luvmarypoppins!  I can't believe how fast time has gone, my little guy is 9 months old already!  And he is wonderful.

As for the scope, no I definitely never had that.  The surgeon did say that there is a procedure he can do to fix my vocal cords.  But he has yet to explain it, he keeps saying to wait 6 months before we discuss it.  Thanks for the advice on the name brand meds, I am going to bring that up to my endo next visit.


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## luvmarypoppins

dischick - I know I explained that surgery to you before. But before your surgeon even talks to you about that he should rule out if you REALLY need it.

This would be done by...
1. The scope test I just mentioned and
2. The strobe test. That is what I had done too. Its hooking you up to like some dog collar thing with the scope down you and a speech therapist watching like the speech waves on a print out too.

Ask you dr. about these things. I go to a university hosp. for this. I dont know where you go if they have that equipment but they should. I know my one surgeon is a voice specialist from westchester. He speaks at conferences on the voice etc.too.

If your surgeon cant do it, he should send you somewhere that can for sure. You dont want them injecting you with foam if you dont need it etc. 

Wishing you all the best as always.


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## dischick4778

I know I complain about my voice, but I feel like I can share that here because you all understand.  That being said, I'm really not interested in any unnecessary procedures.  After all I have been through already, and with the possibility of more in the future should the cancer come back, I don't really want to have this done.  I'm ok with a soft, raspy voice.  Thank you for the information and support.


----------



## luvmarypoppins

Well I survived the sonogram today. Its always fine on the R side, just the L side that was terrible. I was lying there gritting my teeth the pain was so bad. She even stopped and said - are you all right? I said yes, you just go and do what you have to do etc. She said it would be over soon. Glad it was.

Good thing she said the oncologist can pull up the report tomm. in the computer, so I hope she does.


----------



## mrsklamc

I'm so sorry it was painful for you. I guess it must be related to how much more extensive your surgery had to be?


----------



## luvmarypoppins

mrsklamc said:


> I'm so sorry it was painful for you. I guess it must be related to how much more extensive your surgery had to be?



Well I know if you look at the L side of my neck you can actually see the vein beating through the skin, pretty gross!! My ds say "its weird". 

There is a picture of me on here but you cant see it that well, but you can see it looks different (not a close up, jjust me and another diser) 

And I am on  and Praising God today. The oncologist said my sonogram was good. Her plan is to have me come back in 6 months and then we will do the 2 thyrogen shots in the hospital and then the 5th day is the lab blood test. I will ask her about that. As last time I had the blood draw in the hosp. I read it had to be done precisely with in the hour of when you had the thyrogen shots, for example between 11 am and 11:59 am. I know the lab my ins. takes has an office closer to the hosp, but we will see.

The onc. also said they are having a problem with the thyrogen supply. I am thinking she means they arent manufacturing enough of it?? She said that should be fixed before I get back there, hmm supply and demand??  Christine, any insight??

I also told her I am having pain in my jaw, not exactly like the swollen salivary gland stuff, but its across from my ear canal. She said I should go see the ent surgeon. Any one else have something like that??


----------



## Christine

luvmarypoppins said:


> And I am on  and Praising God today. The oncologist said my sonogram was good. Her plan is to have me come back in 6 months and then we will do the 2 thyrogen shots in the hospital and then the 5th day is the lab blood test. I will ask her about that. As last time I had the blood draw in the hosp. I read it had to be done precisely with in the hour of when you had the thyrogen shots, for example between 11 am and 11:59 am. I know the lab my ins. takes has an office closer to the hosp, but we will see.
> 
> The onc. also said they are having a problem with the thyrogen supply. I am thinking she means they arent manufacturing enough of it?? She said that should be fixed before I get back there, hmm supply and demand??  Christine, any insight??



I always had my shots done at my endo's office and had a 10:00 a.m. appt. for them.  I then went on the Friday to the hospital lab and had my blood draw.  My doctor told me to go around 10:00 but I did not have an appt. and no one was really pushing me to go in at a real specific time.  

I don't know about the Thyrogen supply.  I heard that last year they were having quality control issues with it and that they had found "debris" in many of the vials and if a doctor found that it should be discarded.  Nice, huh?  Not sure what this latest problem is about.  I haven't been reading the thyroid cancer mailing list so I'm out of the loop.  They probably know.


----------



## luvmarypoppins

Yes I dont know if it was this year or last year but I had to examine the vial of thyrogen personally and then sign a paper stating that I saw no debris in it etc.


----------



## dischick4778

I'm sorry I'm not familiar with all of this - what are the shots for?

I'm not sure if this is related, but I did hear that the natural thryoid supply is very low.  My friend who was on it had to switch to synthroid because her Dr couldn't get the natural anymore.


----------



## Christine

dischick4778 said:


> I'm sorry I'm not familiar with all of this - what are the shots for?
> 
> I'm not sure if this is related, but I did hear that the natural thryoid supply is very low.  My friend who was on it had to switch to synthroid because her Dr couldn't get the natural anymore.



Thyrogen is a drug that causes your TSH to rise very high, very quickly.  It is recombinant r-TSH.  It takes the place of levothyroxine withdrawal (6-8 wek process) for a RAI scan.


----------



## luvmarypoppins

O.K. I am done with doctors for the week.

Yest. went to the gp. The guy who couldnt even figure out I had cancer even when I was in the hosp. for almost a week etc. . Asked him why I had to wait 5 WEEKS for my blood test results - his usual answer -ummm. (These are the tests the endo told me to ask him to do etc). Well ...they showed my potassium is way too high out of range. Asked him why. He didnt know. He wants it repeated. Will do this by Friday. He said my B12 was way too low and gave me a shot. Umm. I could have gotten a shot last month if they would have callled me. I waited 1 hr. 15 min. in the waiting room no less. My dh took a nap till they callled him. So I got a flu shot, B12 and then I asked him to give me a copy of the blood tests so I could take them to the endo. I got the refill I wanted of my other med, so I think I am gonna go to a different dr. that I took one of my ds too. He is associated with the univ. so he can be in touch with all the specialists etc. 

Oh and he did comment on my belly button...hmm. another surgeon visit next month. same old, same old

And today I went to the ey dr. because the endo thought the radiation might have affected the eye etc. My eye dr. said it was not from radiation but I just needed antibiotic drops to clear them up. My eyelashes are too long. Go figure. She told me she has ovarian cancer and even showed me her port. I told her to fight strong!!

I feel like my body is a bunch of chemicals out of wack lately


----------



## mrsklamc

Posted here the other day but I guess it didn't take.

Luvmarypoppins, I'm sorry you are having such a tough time. It must feel like you are ALWAYS at the doctor. 

Saw my endo, TSH was .04 and I've been having some heat intolerance so she's lowering my dose a bit- FYI she said 10-15 pounds in weight fluctuation was when they normally see changes. 

I thought she had said we'd do a chest xray in 6 months but she ordered one for today. When I came home today my copy of the results was in the mail. Under 'notes' it said 'cells in serum' and that has me a bit freaked out, and of course per usual it's Friday after 5 and there's no one to call. I thought they'd have to do a thyroglobulin test to tell if there were thyroid cells. Maybe it means something else completely but googling doesn't seem to show anything. Oh well. Guess I'll wait and see.


----------



## luvmarypoppins

Micayla - sorry you have to wait for the results. I am sure it must be frustrating.  Did your endo say why she wanted to do another chest x ray today?

That is interesting that your endo lowered your synthroid dose. Mine said no way was she doing that and it will be 2 year in jan. I only had 1 initial adjustment.

Hoping you get the answers you need soon and that you will get a good report!! Think positive. 

I had my blood test today, so we will see. This time it was the large needle, so there wil not be a false reading. (I also am having them send a copy to the endo)

I am seeing I have a little more energy in the morning since the B12 shot so that is good for sure.


----------



## mrsklamc

luvmarypoppins said:


> Micayla - sorry you have to wait for the results. I am sure it must be frustrating.  Did your endo say why she wanted to do another chest x ray today?
> 
> That is interesting that your endo lowered your synthroid dose. Mine said no way was she doing that and it will be 2 year in jan. I only had 1 initial adjustment.
> 
> Hoping you get the answers you need soon and that you will get a good report!! Think positive.
> 
> I had my blood test today, so we will see. This time it was the large needle, so there wil not be a false reading. (I also am having them send a copy to the endo)
> 
> I am seeing I have a little more energy in the morning since the B12 shot so that is good for sure.



I'm glad you are having results from the shot. 

When I did my testing one radiologist thought he saw something on the scan in my lungs, another didn't so they did a pet scan, still said nothing but do an x ray to be sure. I thought she had said in 6 months, but they did it today and I'm wondering if the 'cells in serum' notation bumped it up or I just misunderstood.


----------



## Dvynangel

I joined the Dis Boards last year and haven't revisited since last December.  My husband (DaParkers) is the ultimate Disney expert and Dis Board fan in our house.  I listen to tsome of the pod casts with him and I know a whole lot about Disney from him.  I say all of this because as much as I love Disney, I never felt more compelled to respond to thread than now.  During my one and only pregnancy in 1999, I went from 128 lbs to 205 lbs.  And even though I was in the Army and ran and worked out regularly, I could only get down to 148 lbs....and that was working out twice a day and eating next to nothing.  After years of being told that I was just "fat" and it was my fault, I was finally diagnosed with hypothyroidism in 2003.  It was a relief to know that my "fatness" was not because I was lazy or greedy or unmotivated. It was also a relief to know that there was therapy and medication to help with my other sympoms.  It was and still is frustrating that although medication helps, it doesn't cure me. I'm tired of working hard to stave off obesity, of having brittle hair and nails, of suffering from depression, and from having problem skin (among other such appealing symptoms).  So since I can't defend myself from the judgmental stares and comments of strangers and my loving family (who never forget to remind me of how "big Dianna is"), I do take solace in the fact that although I know that others are like me, I can read and share with you wonderful faceless thyroid family members and know that I belong to such a great family.  Thank you all for sharing and caring and I will try my best to do the same.  Just give me a moment because I'm reading all threads starting from back in 2006, because I don't want to miss a thing.


----------



## Christine

mrsklamc said:


> I'm glad you are having results from the shot.
> 
> When I did my testing one radiologist thought he saw something on the scan in my lungs, another didn't so they did a pet scan, still said nothing but do an x ray to be sure. I thought she had said in 6 months, but they did it today and I'm wondering if the 'cells in serum' notation bumped it up or I just misunderstood.



Micayla,

Did I miss something?  What test did you have that involved "serum"?


----------



## dischick4778

Dvynangel said:


> I joined the Dis Boards last year and haven't revisited since last December.  My husband (DaParkers) is the ultimate Disney expert and Dis Board fan in our house.  I listen to tsome of the pod casts with him and I know a whole lot about Disney from him.  I say all of this because as much as I love Disney, I never felt more compelled to respond to thread than now.  During my one and only pregnancy in 1999, I went from 128 lbs to 205 lbs.  And even though I was in the Army and ran and worked out regularly, I could only get down to 148 lbs....and that was working out twice a day and eating next to nothing.  After years of being told that I was just "fat" and it was my fault, I was finally diagnosed with hypothyroidism in 2003.  It was a relief to know that my "fatness" was not because I was lazy or greedy or unmotivated. It was also a relief to know that there was therapy and medication to help with my other sympoms.  It was and still is frustrating that although medication helps, it doesn't cure me. I'm tired of working hard to stave off obesity, of having brittle hair and nails, of suffering from depression, and from having problem skin (among other such appealing symptoms).  So since I can't defend myself from the judgmental stares and comments of strangers and my loving family (who never forget to remind me of how "big Dianna is"), I do take solace in the fact that although I know that others are like me, I can read and share with you wonderful faceless thyroid family members and know that I belong to such a great family.  Thank you all for sharing and caring and I will try my best to do the same.  Just give me a moment because I'm reading all threads starting from back in 2006, because I don't want to miss a thing.



Welcome and thanks for sharing.


----------



## luvmarypoppins

Welcome dvynangel

dischick - just wanted to share this with you. Today at church I went up to a lady I knew and wished her a happy thanksgiving. She says "Oh, whats the matter with you, do you have a cold? I told her, no, its the cancer!!: I guess if she would have sent me a card, remembered all I went through last year etc. she might not have asked that question. Oh well, see it will be 2 years in Jan. and I am still getting the stuff about my voice. Ugh!!

I am taking the 1500 b12 daily but I am still tired. The date I will need the B12 shot will be when we are in disney, so I am thinking that I will just go and get it a little earlier before the trip. I know befoe I was getting them every week before my cancer surgery for about a month. I need some strength or dh will be pushing me in the wheelchair alot. And as usual I havent heard about my latest potassium blood test. We shall see. 

Two weeks from today I will be with dh at Disney

Have a blessed thanksgiving everyone. We sure have alot to be thankful for. Count your blessings!!


----------



## dischick4778

Had my second follow up with surgeon and endo last week.  Surgeon says my voice has improved and he is not recommending any further procedures right now, which is fine with me!  He says my scar could look better and gave me these silicone strips to wear.  I don't think it's that bad but I guess he's a bit of a perfectionist.

Endo tested my blood and after getting the results is increasing my synthroid from 188 to 225.  She is also increasing calcitriol from .25 to .50.  I guess all my levels are still quite low.  She has me coming back in a month to check again.  Hopefully we get this right soon, I am so tired.  I'm tired of being tired!  I have a 10 month old baby to care for, a husband, and a ft job.  This thyroid thing is a real inconvenience. LOL.

Hope you all had a wonderful Thanksgiving.  This year I am thankful for each and every day with my family.  Thanks for sharing luvmarypoppins, I guess the cold question is something I will have to live with.  At least I know I'm not alone.


----------



## luvmarypoppins

dischick - I think that is s big increase in the synthroid. Mine is 200 and I either freak out, cry alot at times, it makes you totally hyper and you might actually feel your heart racing. Mine has been 200 for almost 2 years with no decrease from the endo in sight. She says she likes all her thyroid cancer patients high.

Its good you are going back in a couple week for a recheck. Maybe you might ask her about b12 blood testing since that can make you tired too. 

I hope your next blood tests are good. 

I still havent tracked down the reclast that I need for the infusion, my eyes are getting better so that is good PTL and a week from tomm. I will be in Disney with dh2 days at the Poly and 5 days at the Yacht Club


----------



## dischick4778

luvmarypoppins said:


> dischick - I think that is s big increase in the synthroid. Mine is 200 and I either freak out, cry alot at times, it makes you totally hyper and you might actually feel your heart racing. Mine has been 200 for almost 2 years with no decrease from the endo in sight. She says she likes all her thyroid cancer patients high.
> 
> Its good you are going back in a couple week for a recheck. Maybe you might ask her about b12 blood testing since that can make you tired too.
> 
> I hope your next blood tests are good.
> 
> I still havent tracked down the reclast that I need for the infusion, my eyes are getting better so that is good PTL and a week from tomm. I will be in Disney with dh2 days at the Poly and 5 days at the Yacht Club



I am not looking forward to more emotional turmoil.  My husband actually told me the other day that I'm an emotional mess and he wanted me to ask my Dr. if this is part of thyroid issues.  I am normally a pretty calm and quiet person but apparently I have changed.  I don't even realize it half the time.  It is so hard.  My endo also said she likes her thyroid cancer patients on high doses.  

I hope you enjoy your trip.  We just booked AKV for June and it cannot come soon enough.  Missing this past summer due to the cancer was a huge let down for me and I am determined to make this next trip wonderful!  Poly and Yacht Club sounds amazing!  Enjoy every minute!!


----------



## portocall

Two weeks ago I went to the doctor thinking I had caught the sickness that was going around when he asked if I was aware I had a thyroid nodule.  Um no.  So I had the ultrasound and bloodwork done.  The ultrasound showed I have a cyst, not that tiny (and it hurts... tshirts and turtlenecks sound like torture to me) which i am grateful for.  The bloodwork showed I have hypothyroidism.  I just started taking the levotyroxine.  Hashimoto's runs in the family so I should'nt be surprised, yet I am.  Any advice for a newbie to this world?


----------



## Christine

portocall said:


> Two weeks ago I went to the doctor thinking I had caught the sickness that was going around when he asked if I was aware I had a thyroid nodule.  Um no.  So I had the ultrasound and bloodwork done.  The ultrasound showed I have a cyst, not that tiny (and it hurts... tshirts and turtlenecks sound like torture to me) which i am grateful for.  The bloodwork showed I have hypothyroidism.  I just started taking the levotyroxine.  Hashimoto's runs in the family so I should'nt be surprised, yet I am.  Any advice for a newbie to this world?



Be very regular with getting your bloodwork done.  Have it checked every 6-8 weeks for the first few months.  Pay a LOT of attention to how you feel.  If you are crabby, can't sleep, and everyone is getting on your nerves, you may be overmedicated.

Watch the cyst.  Even though you are hypo, no cyst should totally be ignored.  When things get better, push for a biopsy if the cyst does not disappear.  Thyroid cancer is getting more and more common and is hugely treatable in the early stages.  Don't think they every cyst is harmless.

Take your meds at the same time every day, on an empty stomach.  No dairy, no soy,  and no supplements with it.


----------



## dischick4778

portocall said:


> Two weeks ago I went to the doctor thinking I had caught the sickness that was going around when he asked if I was aware I had a thyroid nodule.  Um no.  So I had the ultrasound and bloodwork done.  The ultrasound showed I have a cyst, not that tiny (and it hurts... tshirts and turtlenecks sound like torture to me) which i am grateful for.  The bloodwork showed I have hypothyroidism.  I just started taking the levotyroxine.  Hashimoto's runs in the family so I should'nt be surprised, yet I am.  Any advice for a newbie to this world?



Isn't it amazing!  I went to the Dr for a sore throat and ended up with thyroid cancer.  The most important thing is to pay attention to it.  You want to make sure you stay on top of it.  Take your meds, go to your appointments, and call the Dr with any concerns.  Don't feel like a pest, this is your health.  That was something I had to get used to.  I was always someone who rarely called the Dr and tried to handle ailments on my own, but that is not an option anymore.  Remain positive.  As long as you do what you need to and what the Dr tells you to do you will be good.


----------



## mrsklamc

Can anyone share their experience with thyrogen? First one in January, just wondering what it's like and how long I will be out of commission.


----------



## luvmarypoppins

mrsklamc said:


> Can anyone share their experience with thyrogen? First one in January, just wondering what it's like and how long I will be out of commission.



Well of course we are all different. Do you really want to know my experience??

Also will this be done in conjunction with the low iodine diet again, or will you just be getting the 2 shots and then the blood tests?

This year (2011) I am getting just the 2 shots and blood test, no diet and scan, yippee

Mine were both in conjunction with the diet.
Experience 1: (also the shots will have to be given at the same time I think and the blood draw precisely within the hour of the 5th day they told me.
So Mon. shot
Tues shot
Friday - Blood test

First year, lst shot: O.K. Slight headache/fuzziness

First year - 2nd shot -ok for several hours but by dinner I was feeling so sick and nauseous, but of course you cant have any jello, soup, etc. with the diet. I just had some gingerale. Dont even know if I ate anything. The headache was really bad. I just sat still alot and try to distract my self on the internet (didnt work).


2nd year - This time I was prepared for the side effects. I asked the rad. onc if it was alright to take zofran since I was getting the scan in addition to the blood tests. She said yes. So she prescribed me 2 zofran. 

I didnt have any problems at all and didnt need the pills with both days and both shots.

So now in May 2011 I am having the 2 shots again. Will see if there is any reaction. 

Wishing you all the best. Have a great holiday. I am leaving for Disney in 2 days


----------



## luvmarypoppins

dischick - Did your rad onc. or whoever decided your  rai dose, say why you were getting that specific dose? Just wondering? 

Because from what I have read and seeing what Micayla has been through, I guess I am just curious to see what other drs. opinions on the dose when there is already lymph node mets and also the rare agressive variants.

Hence, just wondering why you got 150?


----------



## Christine

mrsklamc said:


> Can anyone share their experience with thyrogen? First one in January, just wondering what it's like and how long I will be out of commission.



1st time:

First shot:  By the evening a headache and slight nausea. 
Second shot:  Headache gets worse as well as nausea but I don't feel like I'm going to throw up or anything.  Also very tired.  It can best be described as a mild flu.
By the next day, my symptoms were still there but easing off.  By the Friday (scan day), I felt absolutely fine/normal.

2nd time:
Basically a repeat of the first although I think my symptoms were slightly less.

3rd time:

Same as second time BUT, during the evening of my second shot (in the middle of the night), I woke up on FIRE.  So, so hot it was unbelievable.  I got up to get a cold glass of water and then noticed that my heart rate was incredibly high.  I stayed hot and my heart rate stayed up and was about at 150bpms.  I fortunately had a beta blocker med at the house for some old heart palps I used to get and I took a big dose of that and my heart rate went down after 3 hours.

I reported the incident to Genzyme and will, most likely, never use Thyrogen again.  I'm too old to have that happen again!


----------



## mrsklamc

I didn't realize there were multiple shots. How far apart are they?


----------



## Christine

mrsklamc said:


> I didn't realize there were multiple shots. How far apart are they?



You will have one on Monday and on Tuesday.  They are to be 24 hours apart.  Mine were always done between 9:30 and 10:00 a.m.

Then on the Wednesday, you have to go have your blood drawn at around 24 hours after the second shot.  They will also give you your scan dose of RAI.

On Friday, you go and have your scan.


----------



## mrsklamc

I think they are doing it weird, this is only for a thyroglobulin level.She mentioned the diet and I said, I don't understand how that's related? She went back and checked my chart, and then said no diet was necessary. We scanned Sept. 3 and she said they would wait a year before doing it again.


----------



## luvmarypoppins

So just why is she wanting to do the level now? To see if the rai is working? etc. 

Praise God you dont have to do the diet. You have been through so much with that diet. You are the champ!!

I would just have some jello, gingerale and chicken soup on hand just in case. And maybe ask if you are allowed to take something like tylenol etc. for the headache.


----------



## mrsklamc

I think since it grows slowly and my scans had nothing on them in August, and the only thing that did indicate thyroid tissue was the blood test, she just wants to see what shows up. I almost wish she would do the scan too, because even if the blood test is clean, she won't let us start trying to conceive until after a clean scan in August too.


----------



## luvmarypoppins

I m a little confused.

Is this blood test because you said something in another post about cells in serum?? Christine asked about that too.

Also when was your 200 RAI dose?? I thought it takes up to a year to work, hence the half life etc. 

So what would the blood test show if you had the 200 rai not too long ago? Maybe christine could answer this.


----------



## Christine

luvmarypoppins said:


> I m a little confused.
> 
> Is this blood test because you said something in another post about cells in serum?? Christine asked about that too.
> 
> Also when was your 200 RAI dose?? I thought it takes up to a year to work, hence the half life etc.
> 
> So what would the blood test show if you had the 200 rai not too long ago? Maybe christine could answer this.



Hopefully the thyroglobulin is going to show a downward trend at this point. While 6 months isn't enough time for the RAI to be done, the number should definitely be lower than 6 months ago *if* it is working.

As for any changes in the protocol with no scans, you will still follow the schedule I posted above but you will not have a tracer dose on Wednesday.  You will have your Tg labwork done on Wednesday.


----------



## mrsklamc

Thanks Christine.

They said the "cells in serum" didn't mean anything significant.


----------



## dischick4778

luvmarypoppins said:


> dischick - Did your rad onc. or whoever decided your  rai dose, say why you were getting that specific dose? Just wondering?
> 
> Because from what I have read and seeing what Micayla has been through, I guess I am just curious to see what other drs. opinions on the dose when there is already lymph node mets and also the rare agressive variants.
> 
> Hence, just wondering why you got 150?



The Rad Onc. made the final decision on the dose after seeing my post surgery scan.  She felt the surgeon was very thorough and there was no visible signs of cancer left.  She said that she was prepared to give me a much higher dose based on how much cancer was there and how many tumors I had, but after seeing the scan she didn't think it was necessary.  I guess my surgeon really did a good job, it was a 6 hour procedure.  The Rad Onc said that she would have given a higher dose had there been any indication of cancer on the scan.  

Do you think 150 was low?


----------



## mrsklamc

I know that Dr.Ain (recommended to read his site by Christine, whose opinion I value highly) says 200 is the least you should have if you have spread to lymph nodes, but I had spread to lymph nodes and my first dose wasn't that high either.


----------



## casndan

Hi guys! I know I've been MIA for a really long time but I got a new job and moved cross country so I've really just been super busy. I'm doing pretty well, I'm on the low iodine diet right now, I take my first shot of thyrogen on the 13th, second on the 14th and RAI on the 15th, full body scan will be on the 17th. I'm so ready to be off this diet, I am so hungry! I'd love some suggestions for some GOOD food!


----------



## angwill

I have also noticed over the years that as my weight goes up and down the thryoid dose I need to regulated go up and down with it.  So what dose works for one won't always work for another.


----------



## luvmarypoppins

dischick4778 said:


> The Rad Onc. made the final decision on the dose after seeing my post surgery scan.  She felt the surgeon was very thorough and there was no visible signs of cancer left.  She said that she was prepared to give me a much higher dose based on how much cancer was there and how many tumors I had, but after seeing the scan she didn't think it was necessary.  I guess my surgeon really did a good job, it was a 6 hour procedure.  The Rad Onc said that she would have given a higher dose had there been any indication of cancer on the scan.
> 
> Do you think 150 was low?



I guess I am just curious. As my rad. onc. said 150 is the standard, then I got 25 for the rare variant and 25 for the lymph node spread. 
And since you are the only one else I know with a rare variant, just wondering how things will turn out.
Dr. Ain said 200 for the rare variants.
I think my rad. onc. is of the mindset to bomb the crap out of the cancer. She says "its agressive, so we will treat it agressively." But she says I am doing well, and I am thanking God for that. I go for another blood test in Jan.


----------



## luvmarypoppins

casndan said:


> Hi guys! I know I've been MIA for a really long time but I got a new job and moved cross country so I've really just been super busy. I'm doing pretty well, I'm on the low iodine diet right now, I take my first shot of thyrogen on the 13th, second on the 14th and RAI on the 15th, full body scan will be on the 17th. I'm so ready to be off this diet, I am so hungry! I'd love some suggestions for some GOOD food!



Good to see you. So is your husband still overseas? Tell him thanks from all of us. 
Just curious what your rai dose will be. See above post. I cant remember your surgery date, but has it b een a while??

Also I hope you dont have a bad thyrogen reaction. Just be prepared for the headache and quesy feelings. Maybe make some soup ahead of time. 

Diet tips:
I did a crock pot oatmeal that I found on the budget board. It was good and I hate oatmeal.
Pop unpopped popcorn in a brown paper bag in the microwave.
Birdseye PLAIN steamfresh vegetables are ok.
Hagen Das Sorbet is ok, but read the label.
Martinnells Pure Apple Juice is ok
Mix it up on the plate for color.
Take a chicken breast in the fry pan and put orange marmalade on it, basmati rice and birdseye steamfresh sugar snap peas and instant close enough to chinese etc. You get the LID picture!!
NO Yolk egg noodles, some beef, peppers and onions and tomatoes (fresh) and close to spaghetti as possible. 

Wishing you all the best. Hang in there!!


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## casndan

I'm actually not sure what dose I'm going to get, I would think that it would be on the lower side because my largest nodule was only 1.8cm with no lymph node involvement but the cancer was multi-focal so I'm not sure. My husband is actually home, he fell out of a guard tower in mid-June and fractured 2 vertebrae and broke his foot and at this point it looks like he will be medically retiring although we're not totally sure at this point. Life is crazy, but it seems to always be that way around here! Thanks for the meal ideas!


----------



## dischick4778

luvmarypoppins said:


> I guess I am just curious. As my rad. onc. said 150 is the standard, then I got 25 for the rare variant and 25 for the lymph node spread.
> And since you are the only one else I know with a rare variant, just wondering how things will turn out.
> Dr. Ain said 200 for the rare variants.
> I think my rad. onc. is of the mindset to bomb the crap out of the cancer. She says "its agressive, so we will treat it agressively." But she says I am doing well, and I am thanking God for that. I go for another blood test in Jan.



Does the dose amount have anything to do with body size or is it strictly related to the cancer.  I weigh around 110lbs and wondered if a higher dose would have really had an impact on my health in general - meaning major naseau, lack of appetite, weakness, and such.  But since I got a lower dose I didn't ask this question.  Also my rad onc made it sound as though she legally (or morally) could not go above 150 unless she saw cancer still on the scan.  Not sure, just hoping things work out.  

I have been taking 225 on levothyroxine for about a week now and .50 on calcitriol.  So far no noticeable change.


----------



## Christine

dischick4778 said:


> Does the dose amount have anything to do with body size or is it strictly related to the cancer.  I weigh around 110lbs and wondered if a higher dose would have really had an impact on my health in general - meaning major naseau, lack of appetite, weakness, and such.  But since I got a lower dose I didn't ask this question.  Also my rad onc made it sound as though she legally (or morally) could not go above 150 unless she saw cancer still on the scan.  Not sure, just hoping things work out.
> 
> I have been taking 225 on levothyroxine for about a week now and .50 on calcitriol.  So far no noticeable change.



Body weight doesn't factor in on RAI.  I do believe that 150 mci is now the standard.

Another factor they take into account, if you have a scan after surgery, is how large the thyroid remnant is that the surgeon left. If the remnant is large, they will likely give you a smaller dose.  If the remnant is miniscule, they like to give a bit of a higher dose.  Sounds backwards, doesn't it?  The more thyroid tissue you have left in your neck, the more that tissue takes it up, the more HOT it gets during treatment, the less you need.  That's why you will often hear of Grave's patients only getting 29 mci to destroy their overactive thyroid glands.  They have so much thyroid tissue and so much energy in their thyroid that they need very little to have it destroyed.

For post-surgery thyroid cancer patients, there is very little thyroid remnant left, and most of what is left is either functioning normally or less than normal.  They take all this into account when figuring out dosage.  

My very small remnant had a hard time ablating, hence I had several treatments (and to think I only had a less than 1cm tumor to start).  On my very last treatment they really wanted it to be at 200 mci because my remnant was so small and not uptaking much.  I begged to keep it lower because of the side effects.  Fortunately, it worked that last time but I did see their logic for wanting to do 200 mci.


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## MAGICX2

Hi Everyone! Its so strange that I got on the DIS to put Thyroid in the search function and before I could even do that this thread came up at the top of the Coping and Compassion Forum. 
Anyway, I was diagnosed last week with a 1cmX2cm solid mass on my Thyroid. I am having a biopsy tomorrow. I am very nervous. I have just started doing a lot of research about it and its freaking me out. The symptoms I started out with are EXTREME fatigue (I could sleep for 12 hours be up a few and then have fitful sleep at night), extreme dry skin, loss of hair, muscle soreness, and then it progressed into difficulty swallowing, excessive sweating, and weird appetite changes. 
I was told that my mass is a solid "cold" mass. I am a Rad Tech so I do have a little more knowledge about the imaging aspect of it than most. 
Any advice?


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## turkeymama

Okay, I'm going to jump in and ask a question.  I have hypothyroidism and the last time I had bloodwork done (just a few weeks ago), my TSH was way off (16.338).  The doc increased my dosage as a result and I have already started feeling better.  

My glucose level was low and the doctor also says I'm hypoglycemic.  He advised me to go on a diabetic diet, which is proving to be more difficult than I thought.  I didn't think to ask him at the time, but could my low glucose be a result of my thyroid being way off?  I've been reading that hypoglycemia can be a result of endocrine disorders.  The only other result that was off was my ANA screen, which was positive.  I don't think that would affect my blood sugar though.  I'm hoping my blood sugar will level out once I get this increased synthroid in my system.  

Any thoughts?


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## dischick4778

casndan said:


> Hi guys! I know I've been MIA for a really long time but I got a new job and moved cross country so I've really just been super busy. I'm doing pretty well, I'm on the low iodine diet right now, I take my first shot of thyrogen on the 13th, second on the 14th and RAI on the 15th, full body scan will be on the 17th. I'm so ready to be off this diet, I am so hungry! I'd love some suggestions for some GOOD food!



Good luck with everything!  Some foods I didn't mind so much included hard boiled egg yolks mixed with avocado to make a kind of egg salad.  I would eat that with lettuce or like a dip with celery.  Bland, but not terrible and I like avocado a lot so that helped.  I also ate a lot of chicken.  Some time I used corn meal to coat it and made baked cutlets.  And oatmeal was basically the only thing I ate for breakfast with fresh blue berries and brown sugar.  It wasn't the greatest tasting food but those were the things that got me through it.


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## Christine

MAGICX2 said:


> Hi Everyone! Its so strange that I got on the DIS to put Thyroid in the search function and before I could even do that this thread came up at the top of the Coping and Compassion Forum.
> Anyway, I was diagnosed last week with a 1cmX2cm solid mass on my Thyroid. I am having a biopsy tomorrow. I am very nervous. I have just started doing a lot of research about it and its freaking me out. The symptoms I started out with are EXTREME fatigue (I could sleep for 12 hours be up a few and then have fitful sleep at night), extreme dry skin, loss of hair, muscle soreness, and then it progressed into difficulty swallowing, excessive sweating, and weird appetite changes.
> I was told that my mass is a solid "cold" mass. I am a Rad Tech so I do have a little more knowledge about the imaging aspect of it than most.
> Any advice?





No good advice. The waiting is the hardest part.  My nodule was also cold but never caused me any symptoms and my thyroid was operating beautifully.  Since your nodule seems to be interupting your thyroid function, maybe it's a good sign that it's just hypothyroidism.


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## Christine

turkeymama said:


> Okay, I'm going to jump in and ask a question.  I have hypothyroidism and the last time I had bloodwork done (just a few weeks ago), my TSH was way off (16.338).  The doc increased my dosage as a result and I have already started feeling better.
> 
> My glucose level was low and the doctor also says I'm hypoglycemic.  He advised me to go on a diabetic diet, which is proving to be more difficult than I thought.  I didn't think to ask him at the time, but could my low glucose be a result of my thyroid being way off?  I've been reading that hypoglycemia can be a result of endocrine disorders.  The only other result that was off was my ANA screen, which was positive.  I don't think that would affect my blood sugar though.  I'm hoping my blood sugar will level out once I get this increased synthroid in my system.
> 
> Any thoughts?



Many years ago, when I was in the hospital for RAI treatment, my blood sugar crashed.  But my TSH was 145, I had just been dosed with a high dose of RAI and it happened after that.

I don't think it is out of the realm of possibility that being hypo could affect your blood sugar.  Being hypo affects the functioning of every organ in your body.  

I would definitely have a retest once you are normal.


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## turkeymama

Christine said:


> Many years ago, when I was in the hospital for RAI treatment, my blood sugar crashed.  But my TSH was 145, I had just been dosed with a high dose of RAI and it happened after that.
> 
> I don't think it is out of the realm of possibility that being hypo could affect your blood sugar.  Being hypo affects the functioning of every organ in your body.
> 
> *I would definitely have a retest once you are normal.*



I plan on doing this within a few months.  In the meantime, maybe I'll just get a monitor to keep an eye on my blood sugar.  I really have been feeling better the last few days, but I have no idea if its because I've cut way back on sugar or because the higher synthroid dosage is working.  Maybe it's both.


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## luvmarypoppins

Well I just got back from Disney

1. Way too cold and I couldnt tolerate the cold well at all, even with 3 layers on. Got to meet Dan Murphy and buckelew11 and her mom so that was good

2.  I feel so tired again, even with taking the b12 pills daily. So I missed the shot last week and will try to get it this week.

3. And last but not least, dischick, in honor of our voices. A disney story...
Checked into the Yacht Club. O.K. my voice was bad, generally bad. With the cold and also I didnt feel like hydrating myself alot in the freezing cold. The cast member says to me, at the check in desk.."Oh do you have a cold?" I said, "No, I have cancer!!".  She promptly gave dh and I celebration buttons and wrote celebrating LIFE on them

4. I am going to the stomach surgeon tuesday. We will see what he says. He is just watching and waiting right now. I would be happy with a ct scan.

5. Blood test next month to see if the cancer is playing nice. 

Hope you are all doing well. Blessings always.


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## dischick4778

luvmarypoppins - I am sorry to hear the weather wasn't great, but hope you had a good time anyway.  Thanks for sharing your check in story.  I guess you get used to having to explain it after a while and it probably gets easier.  Also glad to hear how Disney handled it.  Hope you had a magical time!


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## luvmarypoppins

Cassie - just wondering how you are doing?


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## casndan

I'm doing pretty amazing actually! I did well with the RAI beyond some salivary irritation. I have a full body scan tomorrow and I'm feeling pretty optimistic!


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## luvmarypoppins

Cassie - glad to hear you are doing well. Just curious as to your dose too. Did you get any "intestinal" side effects? Christine says its called "radiation gastritis". 

I hope the scan will go well for you tomm. Nothing like laying on the table for an hour. I had to have some of my pictures done over since at the time I also had an infection in my stomach and that was picked up by the scan so they had to rescan the whole abdominal stuff. 

Sure you will be glad when this is all over and you can get back to as normal as possible.

Hang in there, you can see the light at the end of the tunnel!
Have a great holiday!


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## dischick4778

Before things get too hectic I wanted to wish you all a very happy holiday season.  Whatever you celebrate - enjoy it!  I am feeling especially thankful and lucky this year and wish you all the very best.


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## lizbaby007

Hi all!

Quick question. I had been on armour for quite awhile when Doc switched me back to Levo. Can't stand the stuff...don't really tolerate it well so asked to be switched back to armour. He said that was cool with him but asked if I would be interested in trying something new called Terasent (sp??).

 He said it is a different type of thyroid with no fillers whatsoever and thinks it would work well for me. I figured I would do a bit of research on my own before deciding. Well I can't find anything on the stuff (granted I could be spelling it wrong).  I know what my Dr told me but would love to hear other peoples results with it. 

Anybody??

Thanks in advance


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## luvmarypoppins

lizbaby - no advice, but maybe you could ask your dr. if he/she has a sample of the med and just read the enclosed brochure that comes with it etc. Wishing you all the best.

dischick - thanks for the sweet holiday wishes. I hope you enjoy your christmas too. I am sure it will be very special to you. I am thankful for each and every day, no matter how it turns out. We go to our churchs candelight service and then christmas day we might have a big, breakfast, watch the parade and no presents till the ds read the christmas story from the bible. I am mostly giving them money, easy. Our day is usally quiet. My ds have no grandparents, aunts, uncles or lst cousins etc. But we might go to Nj in Jan. to see my moms best friend who I call aunt. 

Oh, and today I got the B12 shot so we will see how that goes. I am seeing the stomach surgeon on the 28th. It got changed as he had to go and do some emergency surgery. 

Enjoy your holidays everyone. Blessings to you all.


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## casndan

My dosage ended up being 125mci. Body scan showed some possible lymph node involvement, so I'm going to meet with the endo to see what he thinks we should do.


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## Christine

http://www.tirosintgelcaps.com/index.php?page=whytirosint


I think I may have to give this stuff a try since it is almost pure T4 (very little in the way of inactive ingredients).  I am allergic to one of the fillers in Synthroid, hence I take Levoxyl.

To the poster that brought up this new med:

You probably won't feel any better on this than Synthroid.  Armour Thyroid contains T3 which kind of revs you up.  Most endos do not like using Armour because it is dessicated bovine thyroid and can't be as well regulated.  For those patients that have a requirement for T3 along with their T4, they usually give you a prescription of Cytomel along with your T4 preparation.


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## portocall

Christine, thank you very much for the advice.  

I am trying to get into an endo because my throat has been sore for a few weeks and I just cant shake it.  I also want to push for a biopsy.  I have already had cancer so I wont be shocked to hear I have it again but I am praying that not to be the case. 

I am already feeling much better on the levo though.  I am not sleeping the days away anymore.  Waking up at 6:30 has become much easier.  That was my worst side effect, sleeping so much.


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## lizbaby007

Christine said:


> http://www.tirosintgelcaps.com/index.php?page=whytirosint
> 
> 
> I think I may have to give this stuff a try since it is almost pure T4 (very little in the way of inactive ingredients).  I am allergic to one of the fillers in Synthroid, hence I take Levoxyl.
> 
> To the poster that brought up this new med:
> 
> You probably won't feel any better on this than Synthroid.  Armour Thyroid contains T3 which kind of revs you up.  Most endos do not like using Armour because it is dessicated bovine thyroid and can't be as well regulated.  For those patients that have a requirement for T3 along with their T4, they usually give you a prescription of Cytomel along with your T4 preparation.



THANKS!! This is exactly what I was looking for.


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## luvmarypoppins

Well Happy Almost New Year everyone

And in honor of the not being on the LID diet, you can all go read my dining reviews on  the other board from our dec. trip

Well I went to the surgeon today. He is giving me three weeks of anitbiotics then will decide if he is doing more surgery on me. It will be a 20 minute surgery. He did this once before and it didnt work, so I might think twice about this. He was writing out my script and said to dh, whats your wifes name again, I forgot. Hmm, I think I should be scared. I told him, its ok because you are not cutting me up yet. I think these surgeons just see you as a body they cut up etc. Yes, you cant remember me and operated on me 4 times last year.Thanks to him my belly button  is killing me right now.

And dis chick (are your streets plowed yet? I am hearing horror storeis on channel 2!)..the nurse today was asking what was up with my voice, scar etc. and of course I had to say thyroid cancer. I hate this nurse. She is new and has no compassion for people. I cringe when I get her. So there we go again. Maybe I should make up a badge/pin...YES I have thyroid cancer and a bad voice too!!:rotfl

Micayla - hope your testing goes well, Keep us informed.

Cassie - when are you seeing the endo?


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## dischick4778

luvmarypoppins thanks for checking in!

I give you a lot of credit for dealing with that surgeon and nurse, they sound awful and would make me so nervous.  This is your life they are taking into their hands and should be more respectful to you.

As for the weather around here, we just had the plow come through our streets yesterday!  We were snowed in for 3 days!  The mayor is getting so much slack for the poor job he did handling this storm and clean up.  If there was an emergency I don't know how we would have gotten out.  

And I like your idea about the button/pin.  We should create one "No I don't have a cold - Just Thyroid Cancer".    At least we can laugh about it together.

Happy New Year to all!  Let's make it a healthy one!!


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## dis2cruise

Hi I just had some blood work done my dr said my cholesterol was 296 and he said my thyroid was an 5.8...he told me I need to take meds for both.  Is 5.8 not a good reading. How bad is it ?


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## mrsklamc

Sounds like your Thyroid Stimulating Hormone is high. It's made by your pituitary gland in your brain. Probably just means your brain is saying 'hey thyroid, we need more work from you,' and isn't getting that work done. The good news is, you can take synthroid to compensate for what your thyroid isn't getting done on its own.


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## dis2cruise

mrsklamc said:


> Sounds like your Thyroid Stimulating Hormone is high. It's made by your pituitary gland in your brain. Probably just means your brain is saying 'hey thyroid, we need more work from you,' and isn't getting that work done. The good news is, you can take synthroid to compensate for what your thyroid isn't getting done on its own.



Thanks...my dr. Put me on Levothyroxine 50 mcg I need to see him in one month for more blood work.


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## mrsklamc

dis2cruise said:


> Thanks...my dr. Put me on Levothyroxine 50 mcg I need to see him in one month for more blood work.



Yup. That's the generic for synthroid. If you are feeling fine, don't worry about it but there are a couple of things that concern me here; 1)most thyroid docs would want you on brand name synthroid and 2) It takes six weeks for the drug to fully take effect rather than 4. So if by chance you aren't feeling 'right' and your doctor can't get you to that point, might look into seeing a specialist.


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## dis2cruise

mrsklamc said:


> Sounds like your Thyroid Stimulating Hormone is high. It's made by your pituitary gland in your brain. Probably just means your brain is saying 'hey thyroid, we need more work from you,' and isn't getting that work done. The good news is, you can take synthroid to compensate for what your thyroid isn't getting done on its own.



Thanks...my dr. Put me on Levothyroxine 50 mcg I need to see him in one month for more blood work.


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## luvmarypoppins

Micayla - have you had the thyrogen yet? I heard you are having terrible snow out there. Wishing you all the best.

Christine - how is your back?

Cassie - hope the endo visit works out for you

dischick - how are you feeling and the voice? Getting ready for our tues/wed snow. I am glad its suppose to start later on. I hate winter and snow. 

Well I think I will get the blood test in about 2 weeks. I have to see when my endo visit is. The antibiotic seems to be working as I dont have the sharp stabbing pain in my stomach. 20 days from today is my 2 year cancerversary. I count it as the day of my surgery. And speaking of the surgeon who almost killed me. I see he is selling his house. dischick you will appreciate this NY price...589,000! Wowsa. I wonder if he is moving. If so, then I think I wil have to have the surgeon who saved my life do any other surgery on me. We will see.

Take care everyone. Blessings always.


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## mrsklamc

I dont think the snow here is too bad.. But then I haven't looked outside. I think some is coming tonight. I have my first injection this morning so hopefully it's not too hard to get there tomorrow for the second one.


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## luvmarypoppins

Micayla - how are you doing? I didnt get the headache right away, more like a delayed reaction, somewhere between 5-7 pm. It knocked my socks off etc.

Take care.

Just wondering if your test turns out well, will your dr. consider doing your next scan with thyrogen instead of the med. withdrawl?

Wishing you all the best.


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## Christine

luvmarypoppins said:


> Christine - how is your back?



Thanks for asking. The back is s-l-o-w-l-y getting better.  At least I don't feel like I have the knife sticking into my left sacroilieum!  I can at least put my socks on without too much pain!

Getting old and out of shape stinks.


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## mrsklamc

luvmarypoppins said:


> Micayla - how are you doing? I didnt get the headache right away, more like a delayed reaction, somewhere between 5-7 pm. It knocked my socks off etc.
> 
> Take care.
> 
> Just wondering if your test turns out well, will your dr. consider doing your next scan with thyrogen instead of the med. withdrawl?
> 
> Wishing you all the best.



So far so good; I am home from work by 5 so hopefully will be ok.

She says the latest data on the thyrogen is good so I think plans to use it from here out.

We are supposed to get a lot of snow tonight/tomorrow so I'm just hoping not to have trouble getting there for the shot.

How long did you feeling bad last? Leaving for Disney on Saturday.


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## luvmarypoppins

The 2nd shot was not as bad. (headache wise, but still felt a little queasy)

It stopped after the shots (ie, next day)

I know once the onc. nurse commented, this med is sure expensive, we usually dont use it for everyone (according to the hosp. website they do!!). I think she said it was like $800 a shot? I dont trust her though, but I am glad we have good ins. from dh, PTL.

Have a wonderful time in Disney World. You sure deserve it with all you have been through!! So where are you staying, where are you eating, please tell!!


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## FormrCastMbr

Hi All!  I hope you do not mind that I post here and ask some questions.

I had my thyroid removed a month ago and the pathology report came back that I had traces of cancer in my thyroid and the 2 lymph nodes that they took out.  We did not know it was cancerous since my last biopsy was 2 years ago and clean.

Long story short, I just moved from NJ to PA so I had to find a new endocrinologist (I have been dealing with multiple nodules and Graves for a few years) and in the meantime, I started having some medical issues and was recommended to see an endo and surgeon, at UPMC (Pittsburgh) and they both agreed to take out the thyroid.  

So now, I am on the generic synthroid (the endo and surgeon were ok with this) and now I need to go for a thyroglobulin test and then RAI.

OK, so now I am babbling......sorry.

I guess my question is for those of you that have had the RAI, what did you do afterwards?   My doctor said it is fine to be in the same house with the family (I have 2 children 12 and 2) but not in contact and the same room for several days.  My husband is freaking out about not being around the kids...we just moved here so we have no family here but can have a couple family members come and help my husband if needed.  

Please let me know your experience with RAI...it would be greatly appreciated!  I have not read this entire thread but I will go back now...

Thank you!


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## mrsklamc

I don't have kids, so I didn't have to deal with that...
Off the top of my head, I almost think it would be easiest to have family come help, and go stay in a hotel if you can afford it. I'd be paranoid about exposing the kids though. But for comparison, I'm also paranoid about the radiation at the new airport scanners, now that I've dealt with cancer.

I think it would be easier for a 2 y.o. to grasp 'mom's not here' than 'mom's here but you can't be around her.


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## FormrCastMbr

mrsklamc said:


> I don't have kids, so I didn't have to deal with that...
> Off the top of my head, I almost think it would be easiest to have family come help, and go stay in a hotel if you can afford it. I'd be paranoid about exposing the kids though. But for comparison, I'm also paranoid about the radiation at the new airport scanners, now that I've dealt with cancer.
> 
> I think it would be easier for a 2 y.o. to grasp 'mom's not here' than 'mom's here but you can't be around her.



Thank you for your feedback.  I am paranoid too and yes the baby would be banging on the door if I was in the house and not paying attention to him.  

I would go to a hotel but I think they do not think that is a good idea either.  I am so confused!


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## mrsklamc

Many people go to hotels; radiation risk is much smaller for adults and its easier to isolate yourself. The challenge would be the diet as you can't just eat takeout.


----------



## luvmarypoppins

Lauren - do you know what your rai dose is going to be?

I have learned from our resident expert here, Christine, that if you are getting a very little dose the rules are totally different.

Our 3 ds are older teens/young adults so they knew the rules etc. I also stayed overnight in the hospital the lst night. My dose was 200 mci. 

I am sure it will be hardest on the little one. 

I did think about sending the family to a hotel and me staying in the house. My dh has worked with radiation in the past at work, so at the hosp. they were impressed with his knowledge of all of it etc. 

I mostly stayed in the living room, dh kept his 10 feet away. The ds stayed in our family room except going out the door quickly past me. Dh slept on the couch all week. 

We have 2 bathrooms so that helped too. 

I could give you the full heavy duty tips if that is what you are having.

Less rai is a little different.

Wishing you all the best.


----------



## FormrCastMbr

Thank you very much!  I believe I will be getting a small dose of 50 but when I get the thyroglobulin test back, they will confirm that.  I wanted to send the family to a hotel, but they did not go for that!  Oh how I would love to have the house to myself for even a day!  

Has anyone had the cancer of the thyroid travel to the lymph nodes?  Of course they tell you thyroid cancer is the most treatable but you hear the "C" word its a different story.  

I am really paranoid since my brother just died of stomach cancer which I know is a totally different story.  

Thank you again.  I hope everyone is feeling good!


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## mrsklamc

FormrCastMbr said:


> Has anyone had the cancer of the thyroid travel to the lymph nodes?



Mine was in 7 of nine lymph nodes that they removed.


----------



## mrsklamc

luvmarypoppins said:


> ! So where are you staying, where are you eating, please tell!!



We're staying off site, at Windsor Hills- My sister, her husband, their 5 kids, my mother, my aunt, DH, and I. Probably not too much in the way of interesting food either. Hopefully next trip in a few years will be DH, me, and one or more kiddos of our own, and then we'll stay onsite!


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## FormrCastMbr

mrsklamc said:


> Mine was in 7 of nine lymph nodes that they removed.



I have not read back but I hope you are feeling well.  Thank you for the information you have given me.  



mrsklamc said:


> We're staying off site



Have a great trip!  I do not think we are going to WDW this year (unless I go for a quick food and wine weekend so I am getting my Disney fix through others.  I just made an ADR for my sister at Bluezoo for this weekend.  I have never been there but always wanted to go.  My neice is doing a consulting job for Disney so my sister is going for a quick visit.


----------



## Christine

Hi Lauren,

When I had my first treatment, my son was 9 months old.  My treatment was 30 mci and I was really given very little restrictions.  I was told not to hold the baby and that 6 feet distance was good.  At that dose, I was given no restrictions about utensils, washing hands etc.  It was also 1995.

In 1996, I had 150 mci and had to stay over 2 nights.  By the time I was released, based on the geiger counter results, anyone 4 feet away from me wasn't getting anything.  Again, I was told I could bath my kids, get them dressed, etc. but no "hugging" which would bring them right up to my neck. After release from the hospital, I was given no home restrictions for anything else.

At 50 mci, you are going to be pretty safe, at close distance, within about 24 hours.  After that, you will be fine for basic caregiving, just keep anyone away from your neck/chest area.  If it's a higher dose, the timeframe will be a little bit longer.

I was told by a nuclear physician that the precautions are pretty much overkill; however, they do them anyone just to avoid any potential lawsuits.


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## luvmarypoppins

Micayla - your trip sounds great. Heah, you are going to Disney!! I think a big family group would be good.  guess you have to figure out all the logistic stuff and does everyone agree on one plan or several etc? 

Any headache?

Lauren - I am not your typical thyroid cancer patient. My tumor was huge they tell me 12.5 cm. It was crushing my trachea. I had 47 lymph nodes out (modified radical neck dissection). 6 hr. surgery I think 6 were positive and also one of the lymph nodes contained another tumor which they couldnt get a good pathology on as they said it was not thyroid cells?. Post surgery I had bleeding so another 2 hr operation and then at 4 am my jugular vein burst and I had 15 minutes to live, 3 more hours of surgery and an induced coma for 2 days. Lots of prayers that God heard and I am still here today, PTL.

Then thrown in is they told me I have a very rare and agressive variant - columnar cell. Even my rad. onc. cant seem to find much info on it. Out of about 150 thy. ca. patients last year I was the only one with this. 

Everyone is different but I am glad to hear everyones stories. 

Wishing you all the best.


----------



## luvmarypoppins

So did anyone see the article on the aol news today about the girl with thyroid cancer and the low iodine diet.

She describes the low iodine diet as culinary Groundhog Day

I saw her scar. It looks so good compared to what I have for sure.

She said she has to go on the lid every five years for testing., Christine, is this the norm??

Since I had the 2 clean scans I only get the thyrogen and blood test this year the rad. onc. said, so then I guess in 2 more years I get the lid and scan again??

The article also mentioned the movie Elf. It was funny as I loved watching that movie during my recovery. It always made me laugh!!

I also like her attitude about life is too short and I am eating whatever I want. That is my motto too!!

If you get some time..read it.


----------



## mrsklamc

luvmarypoppins said:


> So did anyone see the article on the aol news today about the girl with thyroid cancer and the low iodine diet.
> 
> She describes the low iodine diet as culinary Groundhog Day
> 
> I saw her scar. It looks so good compared to what I have for sure.
> 
> She said she has to go on the lid every five years for testing., Christine, is this the norm??
> 
> Since I had the 2 clean scans I only get the thyrogen and blood test this year the rad. onc. said, so then I guess in 2 more years I get the lid and scan again??
> 
> The article also mentioned the movie Elf. It was funny as I loved watching that movie during my recovery. It always made me laugh!!
> 
> I also like her attitude about life is too short and I am eating whatever I want. That is my motto too!!
> 
> If you get some time..read it.



I'd like to read it, but I'm not finding it..I searched at aolnews.com?


----------



## luvmarypoppins

I saw it when I was doing my aol mail

Its..

The Diet that Saved my Life by Heather Muse


----------



## Christine

luvmarypoppins said:


> She said she has to go on the lid every five years for testing., Christine, is this the norm??




Probably the norm for a low-risk patient who has had successive clean scans for a few years.  It's probably the schedule I should be on.


----------



## Christine

Okay just read the Heather Muse article.  It said at the bottom that she has been in remission for 15 years.  So, she has obviously been clean for 15 years; hence the 5 year testing schedule.  And, at Stage 2 papillary, she's pretty low risk.


----------



## mrsklamc

The comments on that article are astounding. It's amazing the number of people that think they know what they are talking about that have no clue. 

Interesting how the diet varies- of course, it's been years, but no one ever said anything to me about spinach or kale.


----------



## luvmarypoppins

I never heard about the spinach or kale either. I would like fresh spinach in a salad. I cant remember eating any however.

My LID is a combo of the thyca, nih and my rad. onc own rules.

I dont have the list now, but I remember the dietician told me no rhubarb.


----------



## Christine

Hey everyone, how is it going?

The Thyroid Thread has been TOO quiet?

What's everyone up to?

Micayla, how did you do with the Thyrogen?  Side effects?  What was the outcome or did I miss it?

I've been doing a bunch of boring things.  This time of year is my "doctor" time.  Last week I had my GYN appointment and mammogram.  Thankfully all was normal.  On the 31st, I see my endo for my twice a year thyroid check.  I'm sure he'll send me for an ultrasound or something since it's been awhile.  Still dealing with a hurting back but am trying to just live through it.  Fortunately walking and being upright is the best thing for it and I have less pain when doing things like shopping!  I've been trying to lose a little weight or eat better and that's going okay.  I think I've lost about 3 lbs in the last 3 weeks and have been on my treadmill regularly.  I may never look fantastic but I sure do feel better!

My poor dog was diagnosed with hypothyroidism. Can't wait to get her T4 and see her perk up!


----------



## luvmarypoppins

Hi Christine,

Its quiet here because Micayla is at Disney World while dischick and I are enduring more snow and more on tues too? We are so over snow around here.

Sounds like your back issues are bearable. Wishing you all the best. Great for the weight loss. My dh is in china and san francisco right now with 2 of the ds so I miss his back rubs for sure. I havent taken any tylenol yet.

Hope your endo visit goes well. I think I am on the 6 month ultrasound schedule too. Hope you get a good report!!

I finished up my antibiotic on tues and so far , so good. Praise God. I go to see the stomach surgeon Feb. lst. I hope he says no surgery for now. 

My blood test is sat. for now if the weather and roads are o.k. Then the endo visit in about 3 weeks. 

Oh and I made the air popped popcorn in the microwave last night but put lots of butter on it, so I now have another lid option for next time. I think es told me to try that last time but I didnt get around to it. So I have a mew snack option for next lid time. Its a little hard to swallow for me, so I will use alot of soda.

Hope everyone else is doing well too.


----------



## Christine

Well good to hear from you!!  I was wondering why it was so quiet.  Oh, to be in WDW!

I know how you feel about the snow.  We got slammed last winter and I started to go crazy.  We aren't hardly getting anything this year and I'm okay with that.

I do hope your stomach stuff goes well.  My mom's coworker had extensive abdominal surgery last year and he sort of goes through the same things that you do.  He has these internal drains and there always seems to be some low level infection going on.  Very frustrating.


----------



## mrsklamc

In line for snow white right now..... Not sure I have ridden before but giving it a shot since they are tearing it out. Told 'em not to call with my test results til Monday when we are home.


----------



## mrsklamc

Still no results, which I find confusing because it's never taken more than a week before but the nurse was dismissive of me-- 'honey, the test they ordered for you takes awhile.' 

Does anyone think the thyrogen made you feel hypo? I thought it wasn't supposed to but I think it's mildly had that effect but can't find any documentation of others experiencing that.


----------



## Christine

I have had the odd Thyroglobulin test take 11 days before.  Then I've had it take 3 days.  My hospital/lab does not perform the test.  They send it out, say, every Wednesday.  So if my blood was drawn on Thursday, my lab doesn't ship out to the Tg lab until almost a week later.  Then it takes that lab several days to run the test.

I think as time has marched on, labs are sending out more often and so my results have become quicker.  You also have to keep in mind that with all the weird weather that the country has been having, shipment/delivery could have been delayed, lab times could be delayed, and so on.

As for Thyrogen, yes, I felt very hypo for 3 days.  I thought that was very typically.  I remember a lot of people asking if you through you into hypothyroidism.  I don't think it does, I think it's just side effects.


----------



## mrsklamc

Well, I was very tired the afternoons of the days I got my shots. But I've been extra tired and crabby this week too... But so have my co-workers with normal thyroids so maybe it's just the lousy weather.


----------



## luvmarypoppins

Micayla - sorry you are still waiting for your results. I am still waiting too but its only been a week and my endo usually does not call etc.

So while everyone is waiting or just needs something to do in this snowy cold winter January, you can all come on in because you are invited to

my 2 year cancerversary today!!, 2 years ago I had the 3 surgeries in 14 hours, had 15 minutes left to live, 7 blood transfusions, on the ventilator and in the induced coma for 2 days, but Praise God I am still here today!!

Tues I am going to the stomach surgeon. I am sure he will b as happy as I am. It seems the antiobiotic has worked. No draining or pain right now so that is so good!!

Micayala - give us a little Disney update when you get a chance


----------



## Christine

Congrats on the 2 year mark.  I always feel a little better with each passing anniversary myself!!


----------



## mrsklamc

My gosh- I really thought I remembered to post here! I really think the thyrogen messed w. me more than it is publicized to- and I think they know it too, as they are going to check my TSH 6 weeks out and possibly adjust my synthroid.

Anyway, my thyroglobulin was 'less than 0.5' which she thought was great- the last 2 tests were 6 and 4. I would have preferred undetectable but she seemed to think it was an excellent result and I will take what I can get. 

Disney was great except I always try to cram more into the week than really fits.  Maybe we need to start going more often. 

We visited Typhoon Lagoon for the first time and it was SO nice- Should have known a Disney waterpark would be as nice as any other Disney park.


----------



## Christine

mrsklamc said:


> My gosh- I really thought I remembered to post here! I really think the thyrogen messed w. me more than it is publicized to- and I think they know it too, as they are going to check my TSH 6 weeks out and possibly adjust my synthroid.
> 
> *Anyway, my thyroglobulin was 'less than 0.5' *which she thought was great- the last 2 tests were 6 and 4. I would have preferred undetectable but she seemed to think it was an excellent result and I will take what I can get.
> 
> Disney was great except I always try to cram more into the week than really fits.  Maybe we need to start going more often.
> 
> We visited Typhoon Lagoon for the first time and it was SO nice- Should have known a Disney waterpark would be as nice as any other Disney park.



Well, it actually sounds like your result WAS undetectable.  Each lab has different levels that they can measure down to.  When I first started having Tg done, back in the 90s, the labs could only measure as low as 2.0 or something.  So I would get a result of "less than 2.0."  As the tests got better and better, that lab value got lower and lower.  Different labs have different sensitivities.  It sounds like this lab does not/cannot measure anything below 0.5.  So, for their lab, they did not detect any thyroglobulin in your sample.  I can't remember how low my lab goes but I am going on Monday so I will try to remember to ask my endo. 

I think that's fabulous news and you are definitely on the right track.

As to the waterparks, I've been going to them for years and I love them.  Typhoon Lagoon is my favorite one, although Blizzard Beach is close.  There just seems to be much more concrete and Blizzard Beach.


----------



## Christine

Just got back from my twice-a-year endo appointment.  Barring an "upsets" on the thyroglobulin front I don't have to go back for a YEAR!!!  My doctor says that based on the "new recommendations" that are out, people in my situation don't need testing so often as it was proven not to have any benefit.  Now, this is just for people who are way out from initial diagnosis, who've had several clear scans, and undetectable Tg.  I am to have a neck ultrasound every 3-5 years.  Since I had that in 2009, I won't go do that until 2012.  

I did have blood work done so we'll see how the Tg is doing.  I'm always waiting for that other shoe to drop.  Other than that, it makes me VERY happy.  Not that my doctor's appointments are a huge deal but it just gets tiring and I'm tired of using vacation time for doctor's appointments.


----------



## mrsklamc

Christine, that is WONDERFUL news. I am so happy for you!

Thanks for the clarification on the results, too. That was good to hear as well.

I would have responded sooner but we were preparing for 'icepocalypse.' They are telling us to prepare for a couple of inches of ice as well as downed trees and power lines!  Anyone else have a scary forecast?


----------



## luvmarypoppins

Micayla - I am so HAPPY for you. Looks like the 200 rai certainly did the job and bombed the cancer for sure.  I did not have those hypo side effects, or maybe I did but it was not noticeable since I am always so tired anyway. Did you get the headache or quesy feeling with the thyrogen? At least its good they are doing a follow up blood test in 6 weeks.

Christine - I am so HAPPY for you too. Wow that is amazing that you dont have to go for a year. I would love to hear those words one day too.
Just wondering what are the "new guidlines"? I know my rad. onc. stated once she did not agree with the 1 week versus 2 week lid.   

I am going to the endo probably thurs. and just want to know what to ask etc. I am sure she and the rad. onc. wont let me get away with anything since they say mine is so rare and agressive. My endo thought it would come back by 3 years if it would? But then again she only has had 1 other pt. with my type and it was a guy.  

My stomach surgeon visit went very well today. He said its healed well and dont come back for 3 months.


----------



## Christine

luvmarypoppins said:


> Micayla - I am so HAPPY for you. Looks like the 200 rai certainly did the job and bombed the cancer for sure.  I did not have those hypo side effects, or maybe I did but it was not noticeable since I am always so tired anyway. Did you get the headache or quesy feeling with the thyrogen? At least its good they are doing a follow up blood test in 6 weeks.
> 
> Christine - I am so HAPPY for you too. Wow that is amazing that you dont have to go for a year. I would love to hear those words one day too.
> Just wondering what are the "new guidlines"? I know my rad. onc. stated once she did not agree with the 1 week versus 2 week lid.
> 
> I am going to the endo probably thurs. and just want to know what to ask etc. I am sure she and the rad. onc. wont let me get away with anything since they say mine is so rare and agressive. My endo thought it would come back by 3 years if it would? But then again she only has had 1 other pt. with my type and it was a guy.
> 
> My stomach surgeon visit went very well today. He said its healed well and dont come back for 3 months.



Great news on the stomach issue.  That's got to make you feel good!

As for the new guidelines, I don't know if they are the American Academy of Endocrinologist guidelines or if they are some consensus of local endocrinologists or what.  But he mentioned that the data didn't show that all that testing was of any benefit.  Again, this pertains only to a certain subset of thyroid cancer patients, i.e., clean for many years, never any detectable Tg, nonaggressive form at diagnosis, etc.


----------



## luvmarypoppins

Well I am back from the endo.

She says my levels are great, Praise God! She wants to see me in July and have the ultrasound around then and the blood work too.

I told her the rad. onc. was not planning to do the scan in May, just the thyrogen and blood test etc. She says...(visions of Christine, I asked her specifically) about the scan. She says...we believe the scan doesnt show any additional data that the blood test would show etc. So you would probably have just a scan every 5 years and then the ultrasound every 6 months since yours is agressive.

I am also going to ask the rad. onc. what she says about this since they are on my team etc.

The endo. did get to see my eyes tearing so bad again today. I told her I went to the eye dr. She wants me to go see one of the univ. eye doctors as she feels the radiation has definetely affected my eyes somehow. Has anyone else had this problem, christine, any insight? She said they might have to put dye in them to see??

And I will probably have to get the reclast infusion as soon as they can get the med etc.


----------



## Christine

luvmarypoppins said:


> She says my levels are great, Praise God! She wants to see me in July and have the ultrasound around then and the blood work too.
> 
> 
> 
> Great news!!
> 
> 
> 
> 
> I told her the rad. onc. was not planning to do the scan in May, just the thyrogen and blood test etc. She says...(visions of Christine, I asked her specifically) about the scan. She says...we believe the scan doesnt show any additional data that the blood test would show etc. So you would probably have just a scan every 5 years and then the ultrasound every 6 months since yours is agressive.
> 
> Click to expand...
> 
> Even better news.  Now you don't have to do the LID so much.  I think they are finding that the blood work is much more sensitive/reliable than scanning.
> 
> 
> 
> 
> The endo. did get to see my eyes tearing so bad again today. I told her I went to the eye dr. She wants me to go see one of the univ. eye doctors as she feels the radiation has definetely affected my eyes somehow. Has anyone else had this problem, christine, any insight? She said they might have to put dye in them to see??
> 
> Click to expand...
> 
> 
> No real insight.  I do have terrible dry eye myself (I've had dye put in them and the Schirmer's test which is paper strips to measure moisture.  I have mild blepharitis which blocks the oil glands, rosacea that affects the eyes, and very dry eyes. Restasis seems to take care of it for me.  But my eyes do not tear up.  Mine also didn't happen until about 5 years after my treatment so I can't really correlate it to the RAI treatment.
> 
> I got my call from my endo last night.  My TSH was 0.22 and my Tg was undetectable so I don't even SEE my endo until Jan 2012.  I'm relieved but also nervous.  I just can't be pleased!
Click to expand...


----------



## dischick4778

Been catching up on posts and hope you are all doing well.  The weather here is nonsense and I need to move somewhere warm, like Orlando.  

No new updates on my condition, had my last appointment in December and I go back later this month.  Endo thinks 224 of synthroid is working for me but my calcium is still low so I am going back to get tested for that.  6 months after surgery my scar is half faded and my voice is pretty normal.  I'm not sure I will ever be able to scream and I bet my hubby and son are happy about that.  LOL

I am concerned about my personality though.  Has anyone else felt that you've changed?  I seem to have a short fuse and get upset about little things way too quickly.  Not sure if this is related to the synthroid, the fact that I had cancer, or if it's just life.  But it is hard.  People are used to me being so passive and easy going.  But lately I am on a rampage and I don't even know why.  It's frustrating.

Wishing everyone well and promise to come around more often.  I miss my updates from fellow Thyroid friends.


----------



## Christine

dischick4778 said:


> I am concerned about my personality though.  Has anyone else felt that you've changed?  I seem to have a short fuse and get upset about little things way too quickly.  Not sure if this is related to the synthroid, the fact that I had cancer, or if it's just life.  But it is hard.  People are used to me being so passive and easy going.  But lately I am on a rampage and I don't even know why.  It's frustrating.



dischick, 

It has been many years since I was going through all that upheaval so, fortunately, my memory is fading on all that raw emotion that I had.

Yes, I would 100% say that going through all that changed me.  At least in the short term.  I think once I came to grips with the fact that I wasn't going to die, I still had this different outlook on everything and, at least in my head, I had a more cynical look at life.  I was somewhat angry for awhile.  I was mad because I had just had my second child, I was enjoying my "motherhood" with my second child so much more because I was more laid back, I had a new house, and a new job and everything seemed to be in perfect alignment in my life.  Then the thyroid cancer came, the two surgeries, the multiple RAI treatments, the doctor after doctor visit, the other things in my body that just no longer felt right.  Sometimes I am ashamed to say that I was very bitter and jealous of all my healthy, carefree friends who didn't have to go through it.  I was just pissed.  That was the emotional part.

The physical reality is that you've had your thyroid gland ripped out of your body.  It is one of the most important organs for your well-being and physical functions probably aside from your brain and heart.  While you can get your thyroid levels normal in a lab, your hormones will NEVER be the same as when your body produced them.  So you will probably always feel a little different.  Add to that the number of times you have to withdraw from the medication for testing and you have to know that for awhile you are in a constant state of hormonal upheaval that doesn't magically go away in 6 weeks.  My endo once told me that once you go hypo and you get back on medication, the labs may look perfect in 6-8 weeks but it takes all your organs about 6 months to recover.

There was a time that I never thought I would feel myself again but I can promise you that you will.  For me it took years and years and I might not feel as good as I did pre-thyroid cancer but I don't realize it anymore.  What I have now is my "new normal" and I'm doing okay.  It has taken me a LONG time though.  The worst parts I think were the first 3-5 years and the bitterness I felt at times and the feeling that my body had betrayed me.

Jokingly, I had a friend I used to chat with on the thyca chat on AOL back in the 90s.  We would talk about thyroid levels and her guideline was that when EVERYONE around her started getting on her nerves and appearing to be idiots, she knew it was time to get her TSH checked.  It could be that your adjustment period is just going to be rocky for awhile until you find the place that works for you.  Now that I am 47 and having signs of perimenopause, I find the two situations (thyroid hormone adjustment and female hormonal swings) very similar.  My thyroid levels are fine but I'm having more days of wanting to punch everyone in my office than ever!!! But my boss feels the same way and she is my age--not a good pair we are!!!!


----------



## luvmarypoppins

dischick - we have missed you too!  I am so with you on the snow thing. Its piled so high here you cant even see in the shopping centers or the street corners etc. Think I keep thinking we will be at Disney May 20th etc.

Hoping your drs. visit and testing go well.

My personality has changed so much. I know its definetely the medicine plus throw in how I almost died and the coma and no blood in my body, the 7 blood transfusions etc.

I find that everything of my normal pre surgery personality is exacerbated. Funny, as dh and I just told the endo this at my visit this week. He begged her to lower my synthroid and that was a no go.

For example: funny things make me laugh even more

Scary/frightening things cause a huge adrenaline rush and maybe some screaming, my dh hates me in the front seat of the car:

and the worst is:   when people hurt my feelings it is so bad.  I cant get over it. For example my ds was in a wedding in nov. We knew the parents for at least 20 years. We were not invited to the wedding reception but another couple was whose dd was in the wedding that we also knew.  Its like I cant let it go. Normally I would have let it go much sooner. I know its the meds for sure. My dh confers on this and I feel bad for him and my 3 ds sometimes have to walk around eggshells with me so to speak. They are getting used to knowing what is acceptable and unacceptable etc. Life is different for sure.

I dont get mad about the cancer etc. as I have a strong root of faith. Mine is just the emotional changes.

Does any of that sound like what you are experiencing?

As Christine said, you have to find your "new" normal.

Christine, hmm looks like I am the oldest thyroid ca person here. Is that good or bad??


----------



## mrsklamc

Dischick-

Just to give you some hope, I think it's definitely a very personal experience for everyone. When I'm not hypo, I don't feel like a different person- just a person who has to take a pill every day. I'm more of a sad hypo person than an angry one....And for awhile my dose was a bit high and even though it's counter to what you would think, I was always tired because when I went to bed at night I couldn't sleep and my heart would just race. 

But I didn't have a near death experience like luvmarypoppins and they know a heck of a lot more about it now than they did when Christine was first diagnosed. Christine, I can't imagine what it was like back then, and honestly I don't know what I would have done without everyone's experience and help here!


----------



## Christine

mrsklamc said:


> Christine, I can't imagine what it was like back then, and honestly I don't know what I would have done without everyone's experience and help here!





I was VERY alone.  No internet at first, not contact with ANYONE.  About a year after my diagnosis, I got online and stumbled upon an AOL chat.  So, I had to pay for AOL just to participate.  That morphed into the Thyca organizations and into all the seminars and support lists that are out now--from that one little AOL chat.  It used to start at 8:00 p.m. once a week and I remember being so exhausted at that time just trying to stay awake for it (working full time, two little kids, hypo roller coaster).  It was my lifeline though.

The fact that I used to be a terrible hypochondriac (before thyroid cancer) didn't help my emotions AT ALL!


----------



## dischick4778

Thanks Christine, mrsklamc, and luvmarypoppins!  I appreciate you sharing your stories and helping me realize I'm not crazy.  I am generally a very positive person and I believe everything happens for a reason.  So I am not mad about the cancer.  It was scary at first, but I knew I could face it and get through it.

I think part of it is realizing I could have died.  Who knows how long these tumors were in me.  There was so much cancer the surgery took 6 hours and my surgeon said it is usually a 2 hour procedure.  This realization has definitely made me appreciate what I have.  I don't want to miss anything, especially with my son.  I hate that I have to work and just wish I could be home.  I also don't feel like I have time to worry so much about making others happy.  I used to be a very accomodating person and would bend over backwards for everyone even if it wasn't what I wanted.  Now I find I can't be bothered.  I want to do what I WANT and not what is going to please someone else.  Which sounds rude, and I think people are having a hard time accepting this.  But I'm not sure they are seeing it from my perspective.

I am also feeling like my family is done with me being sick.  It was a stressful time for all but I feel they have moved on.  If I call to update on my latest Dr appointment they say "that's nice, glad to hear it's going well" and then move on to something else.  I also get the feeling they don't think I appreciate all they did back when it first happened and that somehow I owe them for life.  But maybe that is my new more sensitive side.

Again, thanks for the support and for listening.  I believe people cannot understand unless they have had a similar experience themselves.  So it is nice to share here and get advice from those who actually get it.


----------



## luvmarypoppins

Nothing too much new. I am probably going to get the b12 shot on Friday. Last one was dec., so I am behind.

The endo wants the reg. md to order a blood test to check my blood counts for anemia and of course the b12 level

dischick - how is your new synthroid level doing? Just curious if you have any heart palpatations?


----------



## mrsklamc

Nothing much new here either. With this group, no news is probably good news 

I have my TSH level blood test on Monday, since that will be six weeks out from my thyrogen shots.


----------



## mrsklamc

Just back from the library, where in the 'New' section I spotted a book co-authored by Dr.Kenneth Ain and Dr.Sara Rosenthal. Diving into the cancer section right now!


----------



## dischick4778

Had visits this week with both endo and surgeon.  Endo says my meds are good.  Calcium is still low but the synthroid is perfect according to her.  I don't have palpatations, but I do get anxious and stressed a lot.  Not sure if its related.  Surgeon says scar looks good and voice is sounding better.  He was more concerned with the calcium levels than endo was.  Going back to both in 3 months.  Thanks for checking in!

How is everyone else doing?


----------



## mrsklamc

I'm feeling really burnt out lately. Just 'blah' about almost everything. Wish I knew whether to blame the lack of thyroid, or something else. TSH test today so hopefully that will be a good clue.


----------



## luvmarypoppins

Micayla - sorry you are feeling blah. Hopefully the blood test will show what is up, if anything.  Have you started reading the book yet? We need a review!

Today Sophia B. from Modern Family was on The Talk. Dh and I watched it since he was off. She showed her scar, talked about how young she was with dx, and said stuff like it changes you, you think differently about life etc. 

With the snow, I didnt get the B12 shot, but I did have dh book our disney vacation. We will be at the Grand Floridian May 20-23 (never been there before) and then the Beach Club from May 23-26 all for FREE!. I love dh and all his ff miles. Guess those trips are good for something! This will be great after all the dr. visits, thyrogen etc. I have in May. I want it done before we leave.


----------



## mrsklamc

Ok I have my test results from my TSH but the dr. has not called. Do any cancer survivors recall off the top of your head what your endo likes to keep your TSH at?


----------



## Christine

mrsklamc said:


> Ok I have my test results from my TSH but the dr. has not called. Do any cancer survivors recall off the top of your head what your endo likes to keep your TSH at?



Totally suppressed TSH is what they want.  So 0.00.  Most/many people cannot tolerate that.  I've been as low as 0.03 and thought I was going to lose it.

This last time I was at 0.22 which is just under "normal."  My doctor is happy with that since I'm so far out from diagnosis.


----------



## mrsklamc

Hmmm. I THOUGHT I remembered them wanting it to be less than one, but I don't remember for sure. Guess I'll wait for the dr. to call- I need a new RX either way.


----------



## mrsklamc

Guess I didn't say...mine was .098


----------



## luvmarypoppins

My endo honestly doesnt even tell me the number, but I think next time I will specifically ask what it is.

She always just says stuff like undetectable and that is good and less than 1 etc. She says I like to keep all my thy ca patients as close to 0 as possible. 

You need a new rx as in a refill or are they changing your dose??

The only thing I got today was the ins. bill copy that the endo charged them $220, wowsa, she is my most expensive dr. The surgeons and rad. onc. dont even charge that.


----------



## mrsklamc

I need a refill. But I have enough for a couple weeks.


----------



## Sugar Jones

Hi there everyone my name is Krista.    I have been wondering if I had thryoid issues for some time.   Instead I have been diagnosed with Anxiety.  However there is something in my gut that tells me it's much more than that.   Since you guys actually live with this maybe you can give some insight into my symtoms:

chronic blepharitis - started 6 years ago when I was pregnant
heart palps and feelings of skipped beats - by far the worst symptom 
tired, tired, tired.....but don't sleep well at night
weak arms and legs 
chest discomfort & aches
shortness of breath
chronic diarrhea
nervous
night sweats
dizziness
I've lost 40lbs in the last 3 years without trying, bugt seem to have tapered off

I know I do have anxiety, I'm not denying that.  It runs in my family, but I just don't think the anxiety is causing all of these symptoms.   I would say that all the symptoms have gotten worse since I had my gallbladder out 3 years ago.  Maybe it's related to that.     My current Dr. brushes me off and attributes everything to my anxiety.    I have an "interview" with a new Dr. in April.  I'm hoping she will take me on as patient and will take my concerns seriously 

I checked my last blood test from April/10 and my TSH number says .88 so I guess it's normal.

I just wish I felt normal


----------



## mrsklamc

Sugar Jones said:


> Hi there everyone my name is Krista.    I have been wondering if I had thryoid issues for some time.   Instead I have been diagnosed with Anxiety.  However there is something in my gut that tells me it's much more than that.   Since you guys actually live with this maybe you can give some insight into my symtoms:
> 
> chronic blepharitis - started 6 years ago when I was pregnant
> heart palps and feelings of skipped beats - by far the worst symptom
> tired, tired, tired.....but don't sleep well at night
> weak arms and legs
> chest discomfort & aches
> shortness of breath
> chronic diarrhea
> nervous
> night sweats
> dizziness
> I've lost 40lbs in the last 3 years without trying, bugt seem to have tapered off
> 
> I know I do have anxiety, I'm not denying that.  It runs in my family, but I just don't think the anxiety is causing all of these symptoms.   I would say that all the symptoms have gotten worse since I had my gallbladder out 3 years ago.  Maybe it's related to that.     My current Dr. brushes me off and attributes everything to my anxiety.    I have an "interview" with a new Dr. in April.  I'm hoping she will take me on as patient and will take my concerns seriously
> 
> I checked my last blood test from April/10 and my TSH number says .88 so I guess it's normal.
> 
> I just wish I felt normal



Are you taking anything for the anxiety?


----------



## Sugar Jones

I see a homeopathic Dr. and take a remedy everyday for it.   It helps with the daily anxiety issues I have and stress, but it doesn't help with the majority of the symptoms.  I take Ativan if it is really bad.  

I also find that most of my symptoms are related to my hormone cycle.  It's worse around ovulation time and the week before my cycle is due.  

I know I should probably try a daily anxiety medicine like Effexor or Celexa and I will discuss it with the new Dr.


----------



## Christine

Well, your TSH is pretty good so I'm not thinking it's thyroid.  Plus, based on your symptoms they fall either in the hypo or hyper range, which really points to something else.

However, the TSH is the *THE* defining test.  Your doctor should also run a Free T3 and Free T4 to make sure those are normal also.  They can also run some thyroid antibody test to rule out Hashimoto's thyroiditis which, in some cases, can cause swings in thyroid function.  If those are all normal, the thyroid is not your problem.

You need to have your iron levels tested.  By that, I do not mean just a CBC to tell if you are anemic or not.  You need to a have your ferritin tested.  Ferritin is the measurement of your iron stores that your body pulls from.  It should be about 70.  Mine was at 3.  Yes 3!  And I only, for a short time, became mildly anemic.  During that time I had horrible anxiety and many of your other symptoms.

I also have blepharitis and dry eye but have determined it is not related to anything--just something I have.

Please insist that your new doctor add in a ferritin test when she does your Complete Blood Count bloodwork.

If everything comes back normal there, I would head to a GYN and see if you can have some hormonal tests done.

I'm not saying you don't have anxiety, but I let too many doctors push me into that diagnosis and, you know what?  They were wrong.


----------



## mom23boys

Hi All,
If I can join your thread I would really appreciate it.  I just came back from an endocrinoligist (sp) appointment.  In the fall I felt my throat was enlarged and I was having trouble swallowing.  So I went to the Dr and did a blood test, my tests were good even my thyroid (don't have the results handy I gave them to the dr this morning).  So I went for an ultrasound this past Friday and I have 6 nodules on my thyroid.  One is huge 5 cm on the left, the right side has 4 smaller nodules (2 cm and 4 at 1cm) and the isthmus has a 1cm nodule.  So to say that I am a little freaked out is an understatement. 

I am getting a FNA biopsy in 2 weeks and then to see a surgeon.  I will keep you guys updated it that is okay.  

Thanks for reading.


----------



## Sugar Jones

Thanks Christine.

The more I've been reading about Thyroid the more I am thinking it's not my answer either.

My Ferritin level was 7 on that same blood test.  I've been taking 1 iron pill a day (when I remember) since July.  I'm supposed to take 2 a day during my cycle.  You know I haven't been very diligent about taking them lately.  Maybe that's the cause for my "relapse"  I say relapse because I have been doing sooo well since September.


----------



## luvmarypoppins

mom23boys said:


> Hi All,
> If I can join your thread I would really appreciate it.  I just came back from an endocrinoligist (sp) appointment.  In the fall I felt my throat was enlarged and I was having trouble swallowing.  So I went to the Dr and did a blood test, my tests were good even my thyroid (don't have the results handy I gave them to the dr this morning).  So I went for an ultrasound this past Friday and I have 6 nodules on my thyroid.  One is huge 5 cm on the left, the right side has 4 smaller nodules (2 cm and 4 at 1cm) and the isthmus has a 1cm nodule.  So to say that I am a little freaked out is an understatement.
> 
> I am getting a FNA biopsy in 2 weeks and then to see a surgeon.  I will keep you guys updated it that is okay.
> 
> Thanks for reading.



welcome, mom23boys - from another mom of 3 boys too! I am sure waiting is the hardest.  Since you live in philly, just wondering if you are going to Thomas Jefferson? Are you still having trouble swallowing? The FNA is really not bad at all. I make sure they did novacaine before the actual biopsy. If they are doing multiple spots it might seem a little weird etc. Keep us informed. Wishing you all the best.


----------



## Christine

Sugar Jones said:


> Thanks Christine.
> 
> The more I've been reading about Thyroid the more I am thinking it's not my answer either.
> 
> My Ferritin level was 7 on that same blood test.  I've been taking 1 iron pill a day (when I remember) since July.  I'm supposed to take 2 a day during my cycle.  You know I haven't been very diligent about taking them lately.  Maybe that's the cause for my "relapse"  I say relapse because I have been doing sooo well since September.



Well I think you might have your answer for most of your symptoms.  A 7 is very low.  You basically have no stores so your body only has what is circulating in the bloodstream.

Do try to take the iron.  I start to feel better when my ferritin hits about 25.  I'm not sure I've ever gotten up to the desired 70 but anywhere UP is better.


----------



## luvmarypoppins

So did anyone see the National Rare Disease Day thread on the cb? 

Oh yes, those of us that have thy ca on this thread, you are officially Rare!!

Thats always a joke that I have told my dh, especially when they said I had the rare variant, I always say "I wanted medium, and I got rare!", also our own personal joke since I like steak etc. medium.

There is you ca. humor for the day. 

Oh and I have to call back my endo. I think they have finally got my reclast, so I have to get the infusion set up.

Christine, have you had a routine dexa scan as part of your care? Just wondering since maybe my endo did it because of my age and she said my synthroid is a high constant dose etc.


----------



## mom23boys

luvmarypoppins said:


> welcome, mom23boys - from another mom of 3 boys too! I am sure waiting is the hardest.  Since you live in philly, just wondering if you are going to Thomas Jefferson? Are you still having trouble swallowing? The FNA is really not bad at all. I make sure they did novacaine before the actual biopsy. If they are doing multiple spots it might seem a little weird etc. Keep us informed. Wishing you all the best.



Hi,
I am going to a suburban hospital.  Yes I am still have trouble swallowing, it is not all the time, mostly with dry foods like bread and carbs.  I just can't wait for the whole thing to be over the waiting is exhuasting.


----------



## Christine

luvmarypoppins said:


> Christine, have you had a routine dexa scan as part of your care? Just wondering since maybe my endo did it because of my age and she said my synthroid is a high constant dose etc.



Nope!  My GYN told me to do it at age 50 and my endo didn't feel it needed to be done.  I'm not overly suppressed so I don't think that is increasing my risk.


----------



## mrsklamc

luvmarypoppins said:


> Oh yes, those of us that have thy ca on this thread, you are officially Rare!!
> 
> Thats always a joke that I have told my dh, especially when they said I had the rare variant, I always say "I wanted medium, and I got rare!", also our own personal joke since I like steak etc. medium.
> 
> There is you ca. humor for the day.



Funny because I like things WELL.


----------



## mrsklamc

mom23boys said:


> Hi All,
> If I can join your thread I would really appreciate it.  I just came back from an endocrinoligist (sp) appointment.  In the fall I felt my throat was enlarged and I was having trouble swallowing.  So I went to the Dr and did a blood test, my tests were good even my thyroid (don't have the results handy I gave them to the dr this morning).  So I went for an ultrasound this past Friday and I have 6 nodules on my thyroid.  One is huge 5 cm on the left, the right side has 4 smaller nodules (2 cm and 4 at 1cm) and the isthmus has a 1cm nodule.  So to say that I am a little freaked out is an understatement.
> 
> I am getting a FNA biopsy in 2 weeks and then to see a surgeon.  I will keep you guys updated it that is okay.
> 
> Thanks for reading.



Wow two weeks is a long wait! How frustrated you must be.


----------



## luvmarypoppins

mrsklamc said:


> Funny because I like things WELL.


----------



## itsdisneytime

Hi all. 

My name is Shannon  - 36yr old female - with a 9yr old dd.  I was so happy when I stumbled upon Luvmarypoppins in the disabilities forum.  I was asking about issues I am having since my thyroid removal in July 09.  I am married although I do not have a bunch of sympathy -- somehow my family is detatched and not very emotional (all of us) .. not just me and my husband, I come from a long line of (love your family but dont doat type people).  

Ill try to keep this short to give you basics on me  -- I am really going to need help from kind hearted understanding people with similar issues. 

I went for a health screen in june of 09 after avoiding docs since my dd was born in 02.  I had no health insurance then so I went to a free clinic (my husband and I own a small business and the recession hit us hard) so needless to say I couldnt afford insurance, .... the doc at the free clinic said my thyroid felt enlarged, set me up for an iodized can?  which showed how large it was (i was never told but it was huge they said per the rad tech) .. I then had a biopsy which came back inconclusive - doc said if she were me she went consult with ent and go from there. 
ent free clinic docs offered to operate saying it was too large to not cut 1/2 and test while i was asleep in o.r -- which they did on july 21, 09.  They determined it was cancerous and cut out the whole thing ... 
** my doctor removed 2 lymph nodes so she thought to test and see if it had gone there and while the news was good it had not gone to the lymph nodes == it was complicated by the fact that they told her there was 2 para thyroid glands in there and they could not be put back in. ** 
during my surgery my doctor also lacerated a vein and only after they sewed me back up did they realize i was bleeding internally. 

I spent 11 days in hosp -- ive never gotten a normal blood calcium reading DESPITE the huge quantity of calcitriol and vitamin d and oscal i take ... 

lets dont even talk about my new issues , IBS and constant nausea from the medications and ammounts I am taking -- 

I am being tested currently to see if the cancer has spread as my levels came back high -- this was a non stimulated test, thyrogen will be next. 

does anyone relate to these words:?   my laptop is dying but i also realized i forgot to mention my 2 times radiation ... once was a pill that i took orally and had to isolate for 10 days ... one was 6 weeks of beam treatment that left me with no tastebuds .. or actually, metal tastes


----------



## Christine

Hi there!  Sorry to hear that you have struggled so much with this.  

First, it sounds as if your remaining parathyroid glands never took over for the missing two.  I had one removed during surgery so I've been living with three and have never had a problem.  My surgeon told me that even if you only have one parathyroid left, it will often just work as well as the four did.  I wonder if they damaged the other two during surgery and just didn't know.

Have they given you any hope that they might start working?

It sounds as if you had a Thyroglobulin come back elevated which indicates (since you are still so soon after surgery) that you have persistant thyroid tissue still in your neck somewhere. 

Have you had ultrasounds done?  Are you still without insurance?

I don't know much about external beam radiation as I don't know many thyroid cancer people who've had that.




itsdisneytime said:


> Hi all.
> 
> My name is Shannon  - 36yr old female - with a 9yr old dd.  I was so happy when I stumbled upon Luvmarypoppins in the disabilities forum.  I was asking about issues I am having since my thyroid removal in July 09.  I am married although I do not have a bunch of sympathy -- somehow my family is detatched and not very emotional (all of us) .. not just me and my husband, I come from a long line of (love your family but dont doat type people).
> 
> Ill try to keep this short to give you basics on me  -- I am really going to need help from kind hearted understanding people with similar issues.
> 
> I went for a health screen in june of 09 after avoiding docs since my dd was born in 02.  I had no health insurance then so I went to a free clinic (my husband and I own a small business and the recession hit us hard) so needless to say I couldnt afford insurance, .... the doc at the free clinic said my thyroid felt enlarged, set me up for an iodized can?  which showed how large it was (i was never told but it was huge they said per the rad tech) .. I then had a biopsy which came back inconclusive - doc said if she were me she went consult with ent and go from there.
> ent free clinic docs offered to operate saying it was too large to not cut 1/2 and test while i was asleep in o.r -- which they did on july 21, 09.  They determined it was cancerous and cut out the whole thing ...
> ** my doctor removed 2 lymph nodes so she thought to test and see if it had gone there and while the news was good it had not gone to the lymph nodes == it was complicated by the fact that they told her there was 2 para thyroid glands in there and they could not be put back in. **
> during my surgery my doctor also lacerated a vein and only after they sewed me back up did they realize i was bleeding internally.
> 
> I spent 11 days in hosp -- ive never gotten a normal blood calcium reading DESPITE the huge quantity of calcitriol and vitamin d and oscal i take ...
> 
> lets dont even talk about my new issues , IBS and constant nausea from the medications and ammounts I am taking --
> 
> I am being tested currently to see if the cancer has spread as my levels came back high -- this was a non stimulated test, thyrogen will be next.
> 
> does anyone relate to these words:?   my laptop is dying but i also realized i forgot to mention my 2 times radiation ... once was a pill that i took orally and had to isolate for 10 days ... one was 6 weeks of beam treatment that left me with no tastebuds .. or actually, metal tastes


----------



## MedicBill

Hi guys!
Just found this thread and wanted to jump in. Im a 32 year old guy that was diagnosed with an enlarged thyroid on Oct 15,2010. It was so big that it was compressing my trachea and causing respiratory problems. I had it removed on Nov 15. Pathology report showed papillary cancer and 2 parathyroid glands were "accidently" removed. I did the radioactive iodine treatment, followed by a pet scan and it looks like the cancer is gone. 

My first appointment with an endocrinologist is scheduled for this tuesday, March 7th. Is it normal to go that long before endocrinologists get involved? I was initially on 100 mcg of Synthroid post surgery and after 6 weeks my TSH was 79. My oncologist increased my synthroid to 200 mcg and its still there. Since my surgery I have gained 70 pounds, I cant concentrate on anything  and I get horrible muscle cramps with minimal activity. I expected to gain some weight but this is out of control. Does anybody know why Im having these muscle cramps and is there anything that I should tell my endocrinologist to make sure he understands how miserable I am?

Thanks!
Bill


----------



## mrsklamc

MedicBill said:


> Hi guys!
> Just found this thread and wanted to jump in. Im a 32 year old guy that was diagnosed with an enlarged thyroid on Oct 15,2010. It was so big that it was compressing my trachea and causing respiratory problems. I had it removed on Nov 15. Pathology report showed papillary cancer and 2 parathyroid glands were "accidently" removed. I did the radioactive iodine treatment, followed by a pet scan and it looks like the cancer is gone.
> 
> My first appointment with an endocrinologist is scheduled for this tuesday, March 7th. Is it normal to go that long before endocrinologists get involved? I was initially on 100 mcg of Synthroid post surgery and after 6 weeks my TSH was 79. My oncologist increased my synthroid to 200 mcg and its still there. Since my surgery I have gained 70 pounds, I cant concentrate on anything  and I get horrible muscle cramps with minimal activity. I expected to gain some weight but this is out of control. Does anybody know why Im having these muscle cramps and is there anything that I should tell my endocrinologist to make sure he understands how miserable I am?
> 
> Thanks!
> Bill



Good gracious! YES that's a long time before an endo gets involved!!! I'd guess your muscle cramps are because of low calcium from the lack of parathyroids. If your endo is a good one, they will know how miserable an off dose feels.


----------



## MedicBill

mrsklamc said:


> Good gracious! YES that's a long time before an endo gets involved!!! I'd guess your muscle cramps are because of low calcium from the lack of parathyroids. If your endo is a good one, they will know how miserable an off dose feels.




Cool! Thanks for the quick response!


----------



## Christine

MedicBill said:


> Hi guys!
> Just found this thread and wanted to jump in. Im a 32 year old guy that was diagnosed with an enlarged thyroid on Oct 15,2010. It was so big that it was compressing my trachea and causing respiratory problems. I had it removed on Nov 15. Pathology report showed papillary cancer and 2 parathyroid glands were "accidently" removed. I did the radioactive iodine treatment, followed by a pet scan and it looks like the cancer is gone.
> 
> My first appointment with an endocrinologist is scheduled for this tuesday, March 7th. Is it normal to go that long before endocrinologists get involved? I was initially on 100 mcg of Synthroid post surgery and after 6 weeks my TSH was 79. My oncologist increased my synthroid to 200 mcg and its still there. Since my surgery I have gained 70 pounds, I cant concentrate on anything  and I get horrible muscle cramps with minimal activity. I expected to gain some weight but this is out of control. Does anybody know why Im having these muscle cramps and is there anything that I should tell my endocrinologist to make sure he understands how miserable I am?
> 
> Thanks!
> Bill




Hi Bill and welcome.

Yes, it is a long time to go without seeing an endo but I know that endos can be terribly hard to get into, especially if you are waiting to see a top notch one.  Tomorrow can't come soon enough, huh?

100 mcg of thyroid hormone is probably way too low for a man.  Most women thyroid cancer patients are started on a minimum of 125 mcg.  After any adjustments it takes 6 weeks to see *some* improvement. Are you saying that even after the adjustment to 200 mcg, you are still having a TSH of 79?

I'm not shocked you have gained so much weight.  I never gained more than 10 lbs but I was never hypo for as long as you have been.  The good thing is that once my meds were regulated, the hypo weight came off pretty quickly.  It wasn't like it was "real" fat but almost like a swelling kind of weight if that makes sense.

I, for one, used to get horrible muscle cramping and charlie horses when hypo.  I would wake up in the middle of the night with my calves spasming so bad.  I never had a calcium issue so the hyponess definitely causes it.

I hope you get relief soon.


----------



## mrsklamc

Yes, hypo can definitely cause cramps too. I just jumped on calcium because of the para's. 

Question for you guys- the last couple months I seem to be perpetually tired and crabby. My TSH was at .098 but she did alter my dosage slightly because I felt like I might be hyper. But of course, it takes several weeks for the dosage to adjust. In the meantime, I hate feeling like this. Do you think I should wait for the dose to adjust, or maybe ask my GP about anti depressants?


----------



## Christine

mrsklamc said:


> Yes, hypo can definitely cause cramps too. I just jumped on calcium because of the para's.
> 
> Question for you guys- the last couple months I seem to be perpetually tired and crabby. My TSH was at .098 but she did alter my dosage slightly because I felt like I might be hyper. But of course, it takes several weeks for the dosage to adjust. In the meantime, I hate feeling like this. Do you think I should wait for the dose to adjust, or maybe ask my GP about anti depressants?




Oh, that's a tough one.  I will tell you that, for the most part, I do not like anti-depressants because I feel that are WAY overprescribed when good medicine needs to be practiced first.  I can't tell you how many times I've had them thrown at me for "anxiety" and "depression" neither of which I had that weren't due to medical issues.

You may just be figuring out that .098 TSH is too low for you.  I don't truly operate well below 0.3 and that's a good bit higher than you.  I know I've posted this before but I an old thyroid cancer friend of mine told me that she knew when she needed her meds adjusted because everyone became an idiot and a jerk and she was constantly crabbing at everyone.  Permanent PMS.  This is a common reaction to too much thyroid hormone.  I know a lot of people never ask their doctors what their TSH is, but if for only this reason, it's important to figure out at what level do you feel best.

The good news is that coming down from too much thyroid hormone seems to happen quicker than going the other way.  When I've been too hyper, my endo will often have me skip my meds for 3-4 days and then adjust me on the lower dose so I come down faster.  I can usually feel better within 2 weeks.

I don't know if you've ever tried antidepressants but they come with a HOST of side effects that are nasty for some people.  I would be very leary of adding them to the mix of what you are going through unless you are at some point where you feel you can't cope, can't get through your day, I might hold off on them. But everyone is different and you may do well with them.


----------



## mrsklamc

I emailed my endo and asked if they wanted me to wait for the dosage to adjust, or contact my GP. Every time someone annoys me at work I seriously contemplate quitting, and though I should worry about the ramifications of that I just don't care.


----------



## luvmarypoppins

Shannon - I am glad you got over here. When is your thyrogen testing? What happened when you had the internal bleeding. Sounds like what happened to me, but it was the jugular vein and I almost died, lost almost all my blood and was in a coma for 2 days. 

MedicBill - From a fellow NYer.  (Long Island)That is such a long time to wait for an endo visit. I had a long wait too, but when I told my surgeon, they called and got me in much sooner. I go to a univ. teaching hospital so they have several to pick from. I guess if there are limited drs. in your area it might seem like the wait is longer. Hope your endo visit goes well. Take a notebook to write everything down, symptoms, questions you want to ask etc. Sometimes it gets confusing. I think your synthroid level is too low too. Mine is 200. My trachea was being crushed too, so I can relate to that for sure. My one tumor was 12.5. Just curious if you have just reg. pap. or any variant. Of course I am always looking to compare notes and trying to find someone with the rare columnar cell variant which I have, which they tell me is usually found in men.

They are seeing thy ca in men around here who worked at the Ground Zero 9/11 clean up. The hosp. I go to is one of the monitoring places. Of course they dont say much due to confidentiality but I did see one guy in the news etc. 

I got the B12 shot Friday. I am still tired as always.


----------



## itsdisneytime

Bill I am amazed at how similar our stories sound.   I too had my parathyroid glands taken accidentally and i have gained 30 lbs since my surgery.  My thumbs are the most noticeable cramp I have, my hands are constantly numb or tingling when they aren't .... 

** I do have insurance now, and I have been seeing an endocrin dr even when I did not, I was just having to wait a long time on the sliding cost days ** 

I feel like a space cadet at times but I figured that had a lot to do with personal issues with my family that kept me sort of down and depressed feeling .. I have heard though that this thyroid disease and or cancer can cause depression due to hormonal issues.  

I am scared when I hear you all talk to intelligeably about your readings and numbers and such ... I do not know things about my thyroid level .. i only now understand calcium because it is always 3.4 or 3.5 .. and my total calcium is a 7 (whatever that means to me) .. .im critical low is what the screen says when it highlights red.  

What is wrong with my thinking that I am not more intelligeable about my "facts"  I would very much like to blame the fact that Ive been to free clinic doctors who did not have much time to go over things with me ... but, I suppose I could have asked for my charts and taught myself (especially since Ive learned through all of this that you (we) have to be our own advocates when it comes to our health.  

I am sad that I have to push myself as hard as i do to feel normal ... and I feel like I am looked upon as someone fat and lazy ... not someone tired and trying.


----------



## Christine

itsdisneytime said:


> Bill I am amazed at how similar our stories sound.   I too had my parathyroid glands taken accidentally and i have gained 30 lbs since my surgery.  My thumbs are the most noticeable cramp I have, my hands are constantly numb or tingling when they aren't ....
> 
> ** I do have insurance now, and I have been seeing an endocrin dr even when I did not, I was just having to wait a long time on the sliding cost days **
> 
> I feel like a space cadet at times but I figured that had a lot to do with personal issues with my family that kept me sort of down and depressed feeling .. I have heard though that this thyroid disease and or cancer can cause depression due to hormonal issues.
> 
> I am scared when I hear you all talk to intelligeably about your readings and numbers and such ... I do not know things about my thyroid level .. i only now understand calcium because it is always 3.4 or 3.5 .. and my total calcium is a 7 (whatever that means to me) .. .im critical low is what the screen says when it highlights red.
> 
> What is wrong with my thinking that I am not more intelligeable about my "facts"  I would very much like to blame the fact that Ive been to free clinic doctors who did not have much time to go over things with me ... but, I suppose I could have asked for my charts and taught myself (especially since Ive learned through all of this that you (we) have to be our own advocates when it comes to our health.
> 
> I am sad that I have to push myself as hard as i do to feel normal ... and I feel like I am looked upon as someone fat and lazy ... not someone tired and trying.




Don't feel bad, you have to push for information.  I've had a few doctors and they all call me with results and say "your test came out excellent."  I then ask "I would like the numbers specifically" and then they will given them to me.

Someone told me a long time ago to get every copy of my labs as I go along.  I never did that figuring they were all in my file copy.  Well, my long term endo retired 2 years ago and I paid the $75.00 fee to have my medical records copied and sent to the new endo.  Well, it appears that a few things are not in the file. So I wish I had collected all my paperwork.

Some doctors are cooperative and others are not but the deal is, you never know what's going to happen to you, to your doctor, to anything and it's good to have your important records in your personal files.


----------



## mrsklamc

Christine, the endo said they would test my TSH again as well as my free T4. The free T4 is a new one on me.


----------



## Christine

mrsklamc said:


> Christine, the endo said they would test my TSH again as well as my free T4. The free T4 is a new one on me.



That's good.  I always get my Free T4 done.  Sometimes the TSH can be too high or too low and the Free T4 will give a better picture.  I always have it done with my TSH because the TSH doesn't tell all (but it tells mainly everything!).


----------



## hcmommy

During my well woman exam at the gym my Dr. felt what he called a "sizable" nodule on my thyroid.  I had an ultrasound the next day and I just got a phone call with the results.  They said I have a 2 cm nodule on my isthmus (it's slightly visible from the outside and you can defintately feel it), one on the right thyroid, one on the left and they said I had one on the left lobe (I'm wondering if this means I have 4 nodule or if she just repeated herself on the left one).  They are faxing my info to an endo. and I have to wait for a phone call to make an appt.  Gyno office said I will likely need a thyroid scan and fine need biopsy.  I had bloodwork done as well but it's not in yet.

What can I expect from these test and how worried should I be?! What does this all mean for me?  Does it mean I definately have hypo or hyper thyroidism?


----------



## Christine

hcmommy said:


> During my well woman exam at the gym my Dr. felt what he called a "sizable" nodule on my thyroid.  I had an ultrasound the next day and I just got a phone call with the results.  They said I have a 2 cm nodule on my isthmus (it's slightly visible from the outside and you can defintately feel it), one on the right thyroid, one on the left and they said I had one on the left lobe (I'm wondering if this means I have 4 nodule or if she just repeated herself on the left one).  They are faxing my info to an endo. and I have to wait for a phone call to make an appt.  Gyno office said I will likely need a thyroid scan and fine need biopsy.  I had bloodwork done as well but it's not in yet.
> 
> What can I expect from these test and how worried should I be?! What does this all mean for me?  Does it mean I definately have hypo or hyper thyroidism?




The bloodwork will tell if you are hypo or hyper.  Testing the nodules won't.

The thyroid scan will first be done to see if the nodules are hot (functioning) or cold (non functioning).  That's all that will do.  

The fine needle biopsy will take a sample from each nodule and they will try to determine what type of cells they are.  Obvioulsy they are looking for thyroid cancer.  Please know that if a fine needle biopsy comes back "good" that means it is inconclusive because thyroid cancer does not take up the entire nodule and fine needle biopsies often miss those cells.  

After those procedures and whatever comes back, you will have to let your medical team decide what to do.


----------



## mrsklamc

hcmommy said:


> During my well woman exam at the gym my Dr. felt what he called a "sizable" nodule on my thyroid.  I had an ultrasound the next day and I just got a phone call with the results.  They said I have a 2 cm nodule on my isthmus (it's slightly visible from the outside and you can defintately feel it), one on the right thyroid, one on the left and they said I had one on the left lobe (I'm wondering if this means I have 4 nodule or if she just repeated herself on the left one).  They are faxing my info to an endo. and I have to wait for a phone call to make an appt.  Gyno office said I will likely need a thyroid scan and fine need biopsy.  I had bloodwork done as well but it's not in yet.
> 
> What can I expect from these test and how worried should I be?! What does this all mean for me?  Does it mean I definately have hypo or hyper thyroidism?



It does not mean you definitely have hypo or hyper thyroidism. Even though I had cancer, my thyroid levels were perfectly normal. Be conscientious, but not worried. In the event it's cancer, it's likely very treatable. (Not fun, not easy, but likely treatable.)

Ask what the purpose of the scan is, given that you're having the biopsy. If I could do it over again, I would ask to skip it. I believe the iodine may have messed with my first cancer treatment.


----------



## hcmommy

The nurse at the gyno office said what would likely happen next but I haven't talked to the endo yet.  Maybe he will just do a biopsy?  Or maybe just the scan and then decide whether or not I need the biopsy?  I will keep that in mind though, thank you! Can't wait to see the Dr. and just find out what is wrong one way or the other so I can get it taken care of.


----------



## luvmarypoppins

I am just curious as to those with thy ca, what were the steps in your diagnosis?

Me - no blood tests, (for thyroid stuff I should clarify) even after I spent a week in hospital 1 with my wacky dr. and all kinds of tests, like colonoscopy,endoscopy, stomach motility etc. but lots of blood tests for the anemia and then the 3 blood transfusions.
ultrasound of neck
CT of neck and chest
PET scan
fine needle biopsy (I think they did this twice and it was inconclusive)
Pre-op testing blood and urine showed bad numbers so more of that testing
Another CT scan to rule out adrenal tumor, thiking I might have MEM syndrome
Pulmonary function (surgeon didnt like how I sounded pre op). Told me I might have to have a tracheostomy even before surgery. I actually told him, are you thinking of this? He says, my you think of everything dont you
Core biopsy. This was something else. He said he had to do it as he didnt know what he was dealing with. Can you say caulk gun thing out the side of your neck. Heah dh took me to Outback after that one
I had 5 diagnosis pre op I think. Pap, Meduallary, Lymphoma, Meduallary again and maybe pap again. 

Oh and Micayla, do you live anywhere near Hammond. I am wondering about a restraunt. Seems our distant relative is the manger of one there. Never even heard of this guy before. He is related to our Chicago relatives. Never met them either. Well they are dh relatives I should say.

I think my ent surgeon might be moving. He sold his house. I think he is moving to gr$$ner pastures. I have a feeling where as I saw an ad for a position and it was $500K. So nice to work in the metro NY area when you are a surgeon. Well there is a new one I saw in the hall and the one who operated on me and saved my life, so I guess either one of those will be it if I need them again.


----------



## mrsklamc

My steps to diagnosis were:

ARNP noticed swelling and ordered blood tests the same day. Within a couple of days I had had both the ultrasound and the CT scan; the blood tests were totally normal. Following that my primary care dr. referred me to a wonderful ENT. He called me while I was on the way to the appt. with her and told me I had cancer, so I was bawling when I walked into her office. She said "Well that's premature. No one knows what's going on in there until we do the biopsy." It was just exactly what I needed to hear at that moment. Then I had the FNA (biopsy) which for whatever reason my body had a ....can't think what it's called. My body panicked involuntarily even though I wasn't in pain or scared or anything...Anyway, they wanted to do a bunch of spots and they only did a few because the dr. doing the procedure had already read the first few samples and in her words "doing more is not going to change what needs to happen." (That I needed to have a total thyroidectomy and lymph node removal. Or, in scarier terminology, a modified radical neck dissection.) That was a Thursday. They told us they wouldn't know anything until the next week, so I told DH to go ahead and go on his Friday-Sunday business trip. So he flew to TX friday morning and the ENT called Friday afternoon. She said "The good news is, we can fix this. When I saw you, I thought you had lymphoma." She talked about the surgery, RAI and I remember thinking she was crazy when she said "The worst part of this whole thing will be the diet." If I had only known. It didn't sound too bad at the time....


----------



## mrsklamc

Oh and I am about 3 hours from Hammond (live in the Indy suburbs.) All I know is that's where one of the casinos is.


----------



## mrsklamc

So confused. They lowered my thyroid dose and my TSH is lower than it was 2 weeks ago. Shouldn't it have gone up if anything? My free T4 is in the high end of 'normal' range if you are not a cancer survivor- don't know what that means for if you are.

Well, I did some googling and it looks like if the free T4 is normal that they consider you normal even with low TSH. Which makes me feel a little crazy, but I know that I don't feel right so I am eager to see what my dr. has to say.


----------



## Christine

mrsklamc said:


> So confused. They lowered my thyroid dose and my TSH is lower than it was 2 weeks ago. Shouldn't it have gone up if anything? My free T4 is in the high end of 'normal' range if you are not a cancer survivor- don't know what that means for if you are.
> 
> Well, I did some googling and it looks like if the free T4 is normal that they consider you normal even with low TSH. Which makes me feel a little crazy, but I know that I don't feel right so I am eager to see what my dr. has to say.



There is some lag time on the TSH.

For instance, a few years ago, I started having HORRIBLE, unrelenting heart palps.  All day long, every day.  The first thing I did was have my TSH tested--it was normal.  So I then went on and had weeks of cardiac testing done, which was all normal but confirmed I was having heart palps.  My endo then retested my TSH (about 3 months after the inital test) and it had gone from 0.5 to 0.07 and we don't know why.  He immediately had me back off the dosage and within 2 weeks I was totally better.  So for some reason, my body was reacting to higher doses of hormones before it ever showed up in the test.

So, even though you have been reduced in medication, I think your TSH is not tracking immediately.  

Ideally Free T4 and T3 should be in the middle to high range for a thyroid cancer patient.  You are going to have to find a level that works for you.  I'm sure your Dr. would like your Free T4 very high but if you cannot tolerate it, you are going to have to get it down until you feel sane.  Sometimes it just takes a very tiny bit.


----------



## mrsklamc

Christine said:


> There is some lag time on the TSH.
> 
> For instance, a few years ago, I started having HORRIBLE, unrelenting heart palps.  All day long, every day.  The first thing I did was have my TSH tested--it was normal.  So I then went on and had weeks of cardiac testing done, which was all normal but confirmed I was having heart palps.  My endo then retested my TSH (about 3 months after the inital test) and it had gone from 0.5 to 0.07 and we don't know why.  He immediately had me back off the dosage and within 2 weeks I was totally better.  So for some reason, my body was reacting to higher doses of hormones before it ever showed up in the test.
> 
> So, even though you have been reduced in medication, I think your TSH is not tracking immediately.
> 
> Ideally Free T4 and T3 should be in the middle to high range for a thyroid cancer patient.  You are going to have to find a level that works for you.  I'm sure your Dr. would like your Free T4 very high but if you cannot tolerate it, you are going to have to get it down until you feel sane.  Sometimes it just takes a very tiny bit.



Thanks Christine! My endo is very understanding but it was really hard to say anything because I felt like I was just crazy. But I _know_ I'm 'off' so I'm glad DH pressed me to say something. Two weeks ago TSH was .09 and now I am .06. Free T4 I think was 1.4 but I don't remember now and I don't even know if that number makes sense.  Hopefully she will call tomorrow.


----------



## MedicBill

luvmarypoppins said:


> MedicBill - From a fellow NYer.  (Long Island)That is such a long time to wait for an endo visit. I had a long wait too, but when I told my surgeon, they called and got me in much sooner. I go to a univ. teaching hospital so they have several to pick from. I guess if there are limited drs. in your area it might seem like the wait is longer. Hope your endo visit goes well. Take a notebook to write everything down, symptoms, questions you want to ask etc. Sometimes it gets confusing. I think your synthroid level is too low too. Mine is 200. My trachea was being crushed too, so I can relate to that for sure. My one tumor was 12.5. Just curious if you have just reg. pap. or any variant. Of course I am always looking to compare notes and trying to find someone with the rare columnar cell variant which I have, which they tell me is usually found in men.
> 
> They are seeing thy ca in men around here who worked at the Ground Zero 9/11 clean up. The hosp. I go to is one of the monitoring places. Of course they dont say much due to confidentiality but I did see one guy in the news etc.
> 
> I got the B12 shot Friday. I am still tired as always.



I had my surgery at Peconic Bay and Im being followed at Stony Brook. As far as I know, it was just reg pap cancer. This is actually the first I'm hearing about the connection to Ground Zero and thyroid cancer. I was there for the first 36 hours after the attack and I worked part-time on site for the full duration of the clean-up/ recovery. 

My endo increased my synthyroid to 300 mcg and switched me from generic to the name brand. Hopefully this will get things rolling in the right direction


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## h2oophelia

Hi all!  Boy, am I glad I came across this thread!

I'm 32 and have been diagnosed with Hashimoto's thyroiditis back in December. I was diagnosed with hypothyroidism when I was young (1991) but no one said anything about Hashimoto's. From what I understand, Hashimoto's is the condition which causes hypothyroidism?? Or is it possible to be hypo without having Hashimoto's?? I'm confused. 

Also, after getting test results my doc mentioned that my thyroid is likely deteriorating and that if my TSH goes up, I will have to go to two separate pills every day as I am already on a high dose (200 mcg Levothyroxine). Does anyone have experience with this?

TIA!


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## angwill

h2oophelia said:


> Hi all!  Boy, am I glad I came across this thread!
> 
> I'm 32 and have been diagnosed with Hashimoto's thyroiditis back in December. I was diagnosed with hypothyroidism when I was young (1991) but no one said anything about Hashimoto's. From what I understand, Hashimoto's is the condition which causes hypothyroidism?? Or is it possible to be hypo without having Hashimoto's?? I'm confused.
> 
> Also, after getting test results my doc mentioned that my thyroid is likely deteriorating and that if my TSH goes up, I will have to go to two separate pills every day as I am already on a high dose (200 mcg Levothyroxine). Does anyone have experience with this?
> 
> TIA!



I am on 212mcg of Levothyroxine so I take a 100mcg and a 112mcg because 200mcg is as high as the synthoid/levothyroxine goes.


----------



## Christine

h2oophelia said:


> From what I understand, Hashimoto's is the condition which causes hypothyroidism?? Or is it possible to be hypo without having Hashimoto's?? I'm confused.




Hashimoto's is one cause of hypothyroidism.  You can be hypo and not have it.  It is an autoimmune disorder, meaning it's in the same family as things like lupus and rheumatoid arthritis.


----------



## h2oophelia

Thanks for the info angwill and Christine!


----------



## hcmommy

I'm still waiting for my bloodwork.  I went ahead and called the endo myself because I'm about to go on vacation and didn't want to miss their call.  I got an appt. for April 26th.  Isn't that a long time to wait?  I called the gyno to make sure that I don't need to be seen faster than that but couldn't get the nurse so I am waiting for a call back.  Hopefully she will  have something to tell me on the bloodwork too.  I'm going to ask her if I can come by and get a copy of the u/s and the bloodwork too just because I would like to be informed about what they say exactly.

I'm wondering if I have something like Hashimoto's Disease because  I have another auto immune disease but who knows.  I hate waiting!  I just know it's probably going to be a long process to get a final diagnosis.


----------



## sallysue66

Hi All,
I found out at my last annual check-up that my TSH is 3.06.  FNP said they don't medicate until this is at 4.  Hypothyroidism and Hashimotos runs in the family pretty strong so I was wondering if I should see a Endo.  WWYD?
Thanks,
Lora


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## angwill

sallysue66 said:


> Hi All,
> I found out at my last annual check-up that my TSH is 3.06.  FNP said they don't medicate until this is at 4.  Hypothyroidism and Hashimotos runs in the family pretty strong so I was wondering if I should see a Endo.  WWYD?
> Thanks,
> Lora



Personally I would thank the Lord I didn't have hypothyroidism and hashimotos like my family.  3.06 is a perfect number.


----------



## Christine

angwill said:


> Personally I would thank the Lord I didn't have hypothyroidism and hashimotos like my family.  3.06 is a perfect number.



Actually, under the "new" guidelines (which started several years ago) anything over 3.0 is now considered hypo.  It used to be 5.0.  If you have symptoms and you are over the 3.0, most doctors will treat.

I would go see an endo if you feel bad.  It's one thing if you're feeling okay.


----------



## hcmommy

Dr. office called with my bloodwork and I hope this makes sense, I wrote it down real quick while the nurse was talking...

TSH 3.570
T4 7.3
T3 30
Free T3 2.2

She said all my levels were considered normal.  What do you all think?  I asked her to mail me a copy of the u/s results and the bloodwork.

Now they think I may have PCOS too.  Need to get an u/s at the beginning of April.  Haven't done any research on it yet, I'm more worried about why I have multiple nodules and no thyroid disease?


----------



## Christine

hcmommy said:


> Dr. office called with my bloodwork and I hope this makes sense, I wrote it down real quick while the nurse was talking...
> 
> TSH 3.570
> T4 7.3
> T3 30
> Free T3 2.2
> 
> She said all my levels were considered normal.  What do you all think?  I asked her to mail me a copy of the u/s results and the bloodwork.
> 
> Now they think I may have PCOS too.  Need to get an u/s at the beginning of April.  Haven't done any research on it yet, I'm more worried about why I have multiple nodules and no thyroid disease?



Here is an interpretation of lab values:



> "TSH" Test -- Thyroid Stimulating Hormone / Serum thyrotropin 0.4 to 6
> 
> 0.3 to 3.0 (as of 2003) Under .4 can indicate possible hyperthyroidism. Over 6 is considered indicative of hypothyroidism.* Note: the American Association of Clinical Endocrinologists has revised these guidelines as of early 2003, narrowing the range to .3 to 3.0. Many labs and practitioners are not, however, aware of these revised guidelines.*





> Total T4 / Serum thyroxine 4.5 to 12.5 Less than 4.5 can be indicative of an underfunctioning thyroid when TSH is also elevated. Over 12.5 can indicate hyperthyroidism. Low T4 with low TSH can sometimes indicate a pituitary problem.





> Free T4 / Free Thyroxine - FT4 0.7 to 2.0 Less than 0.7 is considered indicative of possible hypothyroidism.





> T3 / Serum triiodothyronine 80 to 220 Less than 80 can indicate hypothyroidism.



So based on these values above, your TSH is over the mark based on the 2003 recommendations.  My guess is that your doctor is not following the revised recommendations and is strictly going by the lab report which has probably not been updated.  An endo will not ignore this.

Yet, your T4 is very normal.

I could not find a Free T3 interpretation value.

Your T3 is well below normal based on the range I posted.  It is very important to get your lab report and see what the range is on your own bloodwork.  They can differ from lab to lab depending on how they test.


----------



## sallysue66

Christine said:


> Actually, under the "new" guidelines (which started several years ago) anything over 3.0 is now considered hypo.  It used to be 5.0.  If you have symptoms and you are over the 3.0, most doctors will treat.
> 
> I would go see an endo if you feel bad.  It's one thing if you're feeling okay.



Thanks.  I knew about the thyroid issues in my family but really didn't have a clue what the symptoms were other than my Aunts were both really tired and felt bad all the time and one thought she was losing her mind.  I feel fine so was kind of shocked when the FNP called me about my routine labs and told me I was borderline hypo.  I feel fine, ok a little tired but what working mom isn't?  I guess my only symptom is I have been shedding alot of hair.  I had chalked it up to age & peri-menopause.  I don't want meds before I have to but i don't want to get to the point my aunts & cousins were either.  FNP wants to re-check me in 6 months.  I think my course of action now will be to ask for a re-check in 3 months just to stay on top of it and be pro-active.  Sound reasonable?


----------



## sallysue66

angwill said:


> Personally I would thank the Lord I didn't have hypothyroidism and hashimotos like my family.  3.06 is a perfect number.



But she didn't say it was a perfect #.  She said I was borderline.


----------



## luvmarypoppins

MedicBill said:


> I had my surgery at Peconic Bay and Im being followed at Stony Brook. As far as I know, it was just reg pap cancer. This is actually the first I'm hearing about the connection to Ground Zero and thyroid cancer. I was there for the first 36 hours after the attack and I worked part-time on site for the full duration of the clean-up/ recovery.
> 
> My endo increased my synthyroid to 300 mcg and switched me from generic to the name brand. Hopefully this will get things rolling in the right direction



Definetly sounds like you are headed in the right direction. Glad they increased your synthroid. I only take the name brand. Are you going to a SB endo, or one closer to you? I am going to one of the SB endos. I feel its better since they can communicate and get tests etc. much better than someone out of the SB loop. My SB endo talks to the SB rad. onc., I go to the SB imaging center for the neck ultrasounds, so all my info is in once place, they can just pull it up etc. If they think you need to see another dr. for anything else, they will do the referral and get you in faster if you have to etc. Just wondering who your rad. onc. is? I really didnt pick mine, they just assigned me one as part of my cancer team. Did you tell the rad. onc. you worked at Ground Zero. Our friend was a firefighter and he has had alot of lung problems and had to retire. He was buried under rubble and was dug out.He lives in PA now, so I dont know what kind of follow up medical care they are doing. There is a guy who was on tv, I think he was a firefighter from Nesconset or St. James and I think he was the one who had thy ca too?
Wishing you all the best. I dont have to do the diet this year, ! Just thyrogen testing.


----------



## Christine

sallysue66 said:


> Thanks.  I knew about the thyroid issues in my family but really didn't have a clue what the symptoms were other than my Aunts were both really tired and felt bad all the time and one thought she was losing her mind.  I feel fine so was kind of shocked when the FNP called me about my routine labs and told me I was borderline hypo.  I feel fine, ok a little tired but what working mom isn't?  I guess my only symptom is I have been shedding alot of hair.  I had chalked it up to age & peri-menopause.  I don't want meds before I have to but i don't want to get to the point my aunts & cousins were either.  FNP wants to re-check me in 6 months.  I think my course of action now will be to ask for a re-check in 3 months just to stay on top of it and be pro-active.  Sound reasonable?




I think even the 6 months is reasonable and I might do that.

Your other numbers were very good as far as I can tell, so it might be some blip on the TSH test.

Before I had my thyroid removed I had some random tests done and never paid attention to them because I felt fine.  A few years later, in going back over my records I saw that my TSH was always around 3.0 to 3.4 (at that time it was defniitely normal but today it would be borderline).  Anyway, I always felt pretty good.  I, too, worked and had two little kids so any tiredness I did have was not out of the ordinary.


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## luvmarypoppins

Today I am going to the ent surgeon as an emergency. I have a 5cm mass by my L ear region. Its 1 1/2 cm deep according to dh. 

I have taken tylenol, used hot compress yest. It was so painful as it was pulling on the neck dissection skin.

Honestly I dont know what it is. I think its more like something that is infected because all the lymph nodes were taken out over on that side.

I am hoping this does not involve needles or cutting my neck. I would prefer an antibiotic etc. 

Later I am sure I will have an interesting story to share. I just thank God the nurse said I could come in after leaving a voice mail. They told me the earliest booking was in 2 weeks, like the 25th. No way would I last that long.


----------



## mrsklamc

Wow. Praying for you for sure!


----------



## luvmarypoppins

Well I am back from the surgeon. He said its a grade 2 lymph node.

He "thinks" its an infection as it doesnt seem to be "acting" like cancer. Dh asked - well how does cancer act? He said it wouldnt be so fast growing and tender to the touch, which mine is. 

I asked the np, if he took all the lymph nodes out in that area how could it be cancer etc. She said if its cancer, it will just find a place to go

I insisted that he do a fine needle biopsy. He is trying avelox antibiotic. I am supose to go back next monday if they get the path back.

Depending on what is happening he might order a ultrasound or ct scan.

He said to me "so what do you think this is"? Um, I felt like smacking him then. HE is the surgeon. I said, well you said I am full of surprises, so here is one. He did ask how ds21 is, whom he operated on also.

I then saw the dr. who saved my life. He said hi to me. If the other guy wasnt there I wanted to run up and hug him and say thank you for saving my life I told dh. 

So its wait and see right now.


----------



## mrsklamc

I had a swollen gland under my chin; A doc I know personally told me 'the things you're worried about, having had thyroid cancer, don't hurt." My endo concurred when I saw her shortly after. So I don't know if that helps at all but hopefully you will feel the antibiotics kicking in over the next couple of days. 

As to taking all the lymph nodes out- my surgeon said "I tried, I really did, but yours are just huge right now." - i.e. because they were swollen she didn't get out as many as she wanted to. She said she dug from my chin to my collar bone, and I believe her, because I could feel it! So maybe yours were swollen and could have shrunk back down to size...but we're going to go with "it hurts, because it ISN'T cancer!"


----------



## Christine

luvmarypoppins--

Thinking good thoughts for you and hope it works out.  I agree that this sounds rapid and painful so not so much like a recurrence but I certainly understand being worried about it.


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## luvmarypoppins

The lymph node is going way down so Praise God! When I take the antibiotic about 3 hours later I can actually "feel" it in the neck area. Strange.

I cant take it till around 8 pm since I have to get all my vitamins and antacid stuff done 8 hours before.

I still feel a weird area closer to my jaw. If that does not get better I will ask him what it is, like a general swelling/strange feeling.

Micayla - how long did you have to take antibitoics for your chin lymph node?


----------



## mrsklamc

The gland was just swollen from RAI, not really infected, so I didn't have to take anything for it, just wait for it to go away. Still happens sometimes. 

I woke up Tuesday morning, suddenly just feeling 'me' again after 3 weeks of my new dose. Anyone else experienced this?


----------



## luvmarypoppins

Well today is my last day of antibiotics. I am going to get a refill for another 5 days (They said to refill it if I needed it).

The node is down to about the size of my fingernail. Well at least I think. I cant see it from where it is, right below my ear lobe. 

Its so nice and sunny out today and tomm. and I am suppose to avoid alot of sunlight, figures.

I dont know if I should push the ct scan. I personally would feel better if he could see if anything else is wrong in there etc.  I am thinking he will just blow me off about that if the path is negative.


----------



## luvmarypoppins

The nurse practicioner called and left a message that the pathology was NEGATIVE!!  Praise God!!

We are playing phone tag. I left her a message if I should still take the antibiotic on the refill and if the surgeon still wants to see me monday.

I still would like him to address this weird feeling in my neck if it still is there after the antibiotic course is done. Maybe he could pull up my last neck sono and use that as a reference point? I think that usually my endo only gets a copy of the sono since she ordered it. He can pull it up since its in the univ. system so that might help.


----------



## hcmommy

I finally have my results to the U/S in hand if anyone can decipher it for me I would appreciate it.

FINDINGS: The right thyroid lobe is heterogeneous measuring 4.4. cm x 1.9 cm x 1.6 cm.  Heterogeneous hypoechoic nodule within the anterior medial mid right thyroid lobe measures 4 mm x 3 mm x 3 mm.  Thyroid gland is diffusely heterogeneous.  The midline thyroid isthmus measures 7 mm in thickness.  Heterogeneous hypoechoic nodule within the left isthmus measures 20 mm x 18 mm x 12 mm.  Left thyroid lobe is diffusely heterogeneous measuring 3.9 cm x 1.7 cm x 1.6 cm.  Heterogeneous nodule within the midportion of the left thyroid lobe measures 6 mm x 6 mm x 6 mm.

IMPRESSIONS: Borderline prominent and diffusely heterogeneous thyroid gland with bilateral nodularity.  Dominant 2.0 cm nodule within the left thyroid isthmus.  Futher evaluation with nuclear medicine thyroid scan or u/s guided fine needle aspiration is recommended.


----------



## mrsklamc

Basically it just means that there are lumps on your thyroid but they don't know exactly what they are, so they need to test more. I know it's frustrating. The only part I don't really understand is 'diffusely heterogeneous.' *did some googling and it looks like it just means your thyroid is lumpy*

Does it say anything about hyer or hypo echoic?


----------



## mrsklamc

luvmarypoppins said:


> The nurse practicioner called and left a message that the pathology was NEGATIVE!!  Praise God!!
> 
> We are playing phone tag. I left her a message if I should still take the antibiotic on the refill and if the surgeon still wants to see me monday.
> 
> I still would like him to address this weird feeling in my neck if it still is there after the antibiotic course is done. Maybe he could pull up my last neck sono and use that as a reference point? I think that usually my endo only gets a copy of the sono since she ordered it. He can pull it up since its in the univ. system so that might help.



What is the weird feeling in your neck like? I have tingling and really brief stabbing pain sometimes that I assume is healing.


----------



## hcmommy

It said hypoechoic.


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## mrsklamc

hcmommy said:


> It said hypoechoic.



If I recall correctly that makes it more likely to NOT be cancer, but I can't remember which mine was and of course now that I'm looking I can find my CT scan and film but not my ultrasound.

It's funny I have these huge copies of my CT scan ...film, I guess you would call it. I don't think it will ever be useful for anything and yet I can't get rid of it.


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## luvmarypoppins

Went to the ENT surgeon yest. He said my pathology and cytology was negative for thyroid cancer, leukemia and lymphoma, Praise God.

He said he still feels a remnent left of the node so he wants to see me again in three weeks.  He is also sending a note to the rad. onc. and endo. I am hoping the rad. onc. will stick with her original plan and only do thyrogen and blood tests, versus diet and scan.  I hope she agrees that if the path was negative I should be ok with just the thyrogen and blod test.


----------



## hcmommy

Congratulations luvmarypoppins!


----------



## luvmarypoppins

Today I am going for the blood test. The gp ordered a cmp and B12 level.

I think next friday I will get the B12 shot, regardless of whether he has the labs back.

The lymph node is so tiny now.

In about 55 days I will be at the GF and BC! After all the winter weather and health stuff, I need a vacation. And since the hotels are free I am really


----------



## Christine

luvmarypoppins said:


> In about 55 days I will be at the GF and BC! After all the winter weather and health stuff, I need a vacation. And since the hotels are free I am really



Hey now!!  Didn't you just get back!!!!!  I'm jealous.


----------



## luvmarypoppins

Christine said:


> Hey now!!  Didn't you just get back!!!!!  I'm jealous.



Well we were there in December. We are creatures of habit. Usually December and May. I am trying to talk my dh into the food and wine.  We have never done that. Not for the drinking part, which we dont do, just the eating and good weather. I need to find some kind of deal for that. He has an ap and can also get the govt. discount at the swan or dolphin.

I got a new lab tech and all I can say is ouch. I think this girl was so inexperienced. She couldnt get the blood to come out and kept poking the needle around inside me. I almost said something as the needle was coming out and poking me really bad and now I have a nice bruise. I also thought the dr. ordered a cmp but its just a cbc after I looiked at the script.

And the lymph node is getting smaller.


----------



## Christine

luvmarypoppins said:


> Well we were there in December. We are creatures of habit. Usually December and May. I am trying to talk my dh into the food and wine.  We have never done that. Not for the drinking part, which we dont do, just the eating and good weather. I need to find some kind of deal for that. He has an ap and can also get the govt. discount at the swan or dolphin.
> 
> I got a new lab tech and all I can say is ouch. I think this girl was so inexperienced. She couldnt get the blood to come out and kept poking the needle around inside me. I almost said something as the needle was coming out and poking me really bad and now I have a nice bruise. I also thought the dr. ordered a cmp but its just a cbc after I looiked at the script.
> 
> And the lymph node is getting smaller.



Good for you on the lymph node.  Don't you HATE bad lab techs?  I love it when I come across that rare one where I can't even feel the needle go in.

I'm still jealous about your trip.

When my kids were small, we ALWAYS went in May. I would just pull them out of school.  I loved the weather then and the crowds were not awful.  We were there for the Food and Wine festival a few time but never did it because it was all about the kids then.

Once my kids got into higher grades, I couldn't take them out anymore and we've been stuck going in the summer.  God, I hate it.  They are bugging me to go again but I just don't think I can do another summer trip.

I want to go in May so bad.


----------



## luvmarypoppins

Well I read on the American Thyroid Association website that they are expecting a thyrogen shortage until the middle of June for the US.

My rad. onc. mentioned this to me but said it should get straightened out by the beginning of 2011. (Doesnt seem like it, I saw her before christmas)

Anyone have any insight on this. My testing will be middle May so I am hoping my hosp. has a supply of thyrogen and that they wont be using it on a case for case basis. I know I would qualify as the nurse before told me they save it for the older patients etc. and I am already stage 4 so thats gotta count for something.

Also, I told my dh that the nuclear plant in Japan is emitting the stuff I had to swallow. He thinks my logic is strange. He has worked with radiation before too so he is used to all this stuff I guess. He has been banned by the govt. from going to Japan or stopping over there for any flights right now. He is just doing China stuff anyway so it is working out good right now for him.


----------



## mrsklamc

luvmarypoppins said:


> Well I read on the American Thyroid Association website that they are expecting a thyrogen shortage until the middle of June for the US.



I wish you could have had mine. Since it was just the blood test I could have gone on cytomel for a month and then nothing for a week, but my endo thought I would really like the synthroid. Hopefully it will be straightened out by May.

I'm glad your DH doesn't have to go to Japan.


----------



## luvmarypoppins

Well I was reading the thy ca website and a lady in NJ said her I -131 is cancelled after she has been on the diet since they CANT get the thyrogen!!

Wow! This has me concerned. I might have to wait to June, its ok with me as I am sure anyone who needs an initial I-131 dose at my hospital will get the thyrogen first because I dont think they normally withdraw anyone anyway. I said before how my rad. onc. always extols the wonders of thyrogen etc.


----------



## Suzanne033

Hey all!!! I am also a Thyroid Cancer survivor. I was diagnosed in August 2000. I had a complete Thyroidectomy. They also removed 8 lymphnodes around my neck and found that 6 had tumors in them.

The worst part of it all was that I had a 1 1/2 yo DD. It was hard because I couldn't be near her throught the nuc treatments because they said I could give her Leukemia (sp). 

Just had to have followup surgery in January due to another lump in my neck. It was benign but still scary. The best part was that my surgeon this time also specializes in plastic surgery so my scar is nearly non-existent.  The 2001 surgeon did a hack job. DH calls me the Human Pez Dispenser.


----------



## luvmarypoppins

Suzanne - thanks for sharing your story. Just curious as to what kind of thy ca you have and if the new tumor occured on the same side as your original surgery. Did they say what the new path of the new tumor was. I just had that biopsy for the lymph node. 

MedicBill - I dont know ifyou are subscribed to this thread, maybe I will see  if I can send you a pm. Did you get a invite to the cancer talk at sb in Aprill? I am seeing one of those surgeons on Monday anyway so I just might ask him what he will be talking about that I need to know etc. Might save me from going. 

Dischick - long time, no post, how are you?

Hope everyone else is dong well.


----------



## Granfan

Hi everyone, 
DD age 40 had surgery to remove right thyroid lobe which contained a cancerous tumor. Now they want to take out the other side. Pathology report stated that many drs now do not recommend that if nothing else shows. She had the first surgery about a month ago. Does anyone have knowlege about recent medical guidelines on this?


----------



## mrsklamc

Granfan said:


> Hi everyone,
> DD age 40 had surgery to remove right thyroid lobe which contained a cancerous tumor. Now they want to take out the other side. Pathology report stated that many drs now do not recommend that if nothing else shows. She had the first surgery about a month ago. Does anyone have knowlege about recent medical guidelines on this?



I had surgery 18 months ago- 1/2 my thyroid looked perfect but they told me they no longer left the 'good' half because the cancer just comes back if you do.


----------



## Granfan

Mrsklamc, you had a complete thyroidectomy all at once? I wonder why they only took half of DD's The core biopsy had already told them it was follicular neoplasm. Shouldn't they have taken it all at once.?


----------



## mrsklamc

Granfan said:


> Mrsklamc, you had a complete thyroidectomy all at once? I wonder why they only took half oft DD



I'm not sure; They had done a biopsy so they KNEW I had cancer on the left side, and like I said, they told me if they left the right side, the cancer was likely to come back. It's awful that your DD will have 2 procedures...Has she seen an endocrinologist?


----------



## Granfan

Her reports were sent to one and he's the one recommending another surgery.


----------



## Granfan

Maybe the type of cancer makes a difference. We are just so frustrated and confused. Her diagnosis Minimally Invasive Follicular Carcinoma with Onocytic Features.


----------



## mrsklamc

Granfan said:


> Maybe the type of cancer makes a difference. We are just so frustrated and confused. Her diagnosis Minimally Invasive Follicular Carcinoma with Onocytic Features.



I'm so sorry. You end up feeling your way around a lot and it's really frustrating. I don't know what I'd have done without the ladies on this board, so I'm glad you're here....Odds are that if the endo had been in on the situation from the beginning, they'd have went ahead and done a total thyroidectomy. One of many things I've learned is that sometimes the latest greatest info takes some time to filter through the medical community.

I'd guess he's suggesting a total thyroidectomy followed by radioactive iodine therapy?

I recommend going to amazon or your local library if they might have it - look for the complete thyroid sourcebook by ain and rosenthal.


----------



## Granfan

Thank you. Mrsklamc. I'm so glad I found this thread and i will look for the book. God bless you and all others here.


----------



## Christine

Granfan said:


> Mrsklamc, you had a complete thyroidectomy all at once? I wonder why they only took half of DD's The core biopsy had already told them it was follicular neoplasm. Shouldn't they have taken it all at once.?



Yes.  If they knew it was cancer, they should have taken it all out.

Gone are the days where they just removed the cancerous lobe.  Too many times, thyroid cancer recurs in the remaining tissue because thyroid cancer is often "multifocal."  This means it springs up like little tiny specks of pepper throughout the gland that only a pathologist can see.

I had a 1 cm tumor but my "good" lobe also had thyroid cancer cells in it.

I had two surgeries because I did not have a biopsy.  They looked at my tumor while I was on the table and it came back benign, so they stitched me back up.  A week later, the full pathology indicated cancer, so I had to go in and have a very thorough removal of the rest.


----------



## Suzanne033

luvmarypoppins said:


> Suzanne - thanks for sharing your story. Just curious as to what kind of thy ca you have and if the new tumor occured on the same side as your original surgery. Did they say what the new path of the new tumor was. I just had that biopsy for the lymph node.



I had Stage III Papillary. I had to have a complete Thyroidectomy as well as removal of 8 of the lymphnodes in my neck (6 were had malignant tumors in them). They were not contained to one side or the other. Both lobes of the Thyroid were compromised. The new lump showed up on the right side abt a 1/2 in. below my jaw. The new doctor did now give me any information about the new lump other than that it was benign which is all I wanted to hear.


----------



## Aburns8

Just found this thread. Thanks for sharing your stories. I have Hashimotos (diagnosed in 1999). The thinning hair, tiredness and depression suck, but at least it isn't constant anymore.


----------



## luvmarypoppins

Suzanne - I am sure that new tumor scared you. When my lymph node just popped out I was scared too and it was also by my jaw, on the same side as my neck dissection. I am stage 4 pap with the rare columnar cell variant

Granfan - so sorry you dd has to go through this once again. I would be feeling better if the whole thing was out too. I am also wondering why they just didint do it all at once. Is she having the same surgeon again? Wisihing her all the best.

Aburns - welcome

Well as you saw me post, my hosp. is having some talk in about 2 weeks with 2 surgeons, a rad. onc. and a med. onc. Its all about head and neck and thyroid cancer. They are discussing the latest treatments, research etc.

They will have a question and answer session after the presentation.

But since I am going to see the surgeon monday I think I will just ask him what I should know etc. 

So if any of you have some question you want answered let me know. Maybe I can ask him, if he is in a good mood, we will see. Sometimes he is moody and rushy, sometimes he will chit chat etc. You never know. I always take dh with me because it kind of creeps me out psych. that I always have to look at him knowing he almost killed me etc.


So what are you all wanting to know?? Ask away.


----------



## Granfan

Luvmarypoppins
She is not going to use the same surgeon. The new one is a head and neck specialist if she does it.  I am thinking the more I read that all thyroid tissue needs to come out and then radioactive iodine treatments to lessen risk of recurrence.


----------



## Christine

Granfan said:


> Luvmarypoppins
> She is not going to use the same surgeon. The new one is a head and neck specialist if she does it.  I am thinking the more I read that all thyroid tissue needs to come out and then radioactive iodine treatments to lessen risk of recurrence.



You've got it!


----------



## luvmarypoppins

Well I am back from the ENT surgeon.

He says the lymph node is doing good. Looked in my ear about the dizzyness. Tried to get the ear specialist to see me right there but he was too busy etc.  So now in May I am seeing the ear specialist and having a hearing test.

I swear every time I go there I come out with another appt. I am getting sick of all this stuff. I havent had a hearing test in a long time so I guess it will be good. I only have 1 ear so he says he wants to keep the good one good etc. so I guess I see where he is coming from. He said just keep it slow with the movements. He thinks one of those little things dislodged in my ear affecting the balance etc.

I asked him what he was going to be speaking about at that talk. He says, "Oh nothing much, just new ways how to skin cats??, 

The more I see this guy the less I like him. You think after he almost killed me that he would be a little more nicer. Oh well I saw the other surgeon who saved my life and we both had big smiles for each other. That made me feel better for sure. 

I will really need my disney vacation after all of this stuff.


----------



## luvmarypoppins

Well my latest non thyroid blood tests are normal. They were specifically looking at anemia stuff and B12 levels. I always feel so tired. The gp still wants me to do the monthly B12 injections the nurse said.

So how is everyone doing??


----------



## mrsklamc

Been feeling good but TSH came back at .03 so dr is lowering dose even more. 

Birthday was hard this week. Thought I'd be a mom by now- silly cancer throws off your plans. 

I visit the Orlando's local newspaper's site occasionally and was saddened to read that a local news anchor is having half her thyroid removed. Sad cause I know she will just end up in surgery again. Also sad because someone in the comments said their daughter had it and that 'of the 4 kinds of thyroid cancer one of them can recur.' Who is feeding them THAT garbage?


----------



## luvmarypoppins

Just want to say... Happy Birthday!! Micayla

Keep hanging on to your dreams of being a mom. As Mickey says..dreams come true!


----------



## Granfan

Update on daughter: saw the surgeon today to set up surgery. She also suffers from asthmatic bronchitis and has had two emergency room visits this week. First one she was prescribed antibiotic that is contraindicated for asthma which made her worse. Anyway the surgeon said he can't do the surgery until she's better. So, another. Appt. Next week. He said the second antibiotic wasn't even strong enough so he prescribed something else.


----------



## Granfan

luvmarypoppins said:


> Well my latest non thyroid blood tests are normal. They were specifically looking at anemia stuff and B12 levels. I always feel so tired. The gp still wants me to do the monthly B12 injections the nurse said.
> I really hope the B12 will help you have more energy. It's really rotten to feel so tired!
> 
> So how is everyone doing??


 See separate post


----------



## luvmarypoppins

Granfan - sorry to hear your dd is now dealing with the bronchitis issues. I hope the antibiotic works. I am sure she would like to see the surgery over and done with.

I had to wait a long time for the surgery too. They thought I also had an adrenal tumor, so lots of testing and then lots of lung/pulmonary testing. They thought my lungs were bad, but it was really just my huge tumor compressing the trachea.

I also had to wait to get the radiation because I got a bowel obstruction on day 2 of the low iodine diet, so that took a while to recover from too.

Does your dd have an endocronologist? I had to find one between the surgery and the radiation.

Did your dd have the core biopsy that is like the caulk gun going through the side of your neck? I had that one. that showed my pap thy ca but not the rare variant until they did the final path etc.

Wishing your dd all the best.


----------



## Granfan

Luvmarypoppins:
Oh my, you have really been through so much. Yes, she had the core biopsy before the first surgery. All they would tell us is that it was a follicular neoplasm. After the tumor was sent to Mass. They told us it was follicular carcinoma with Onocytic features, not that I really know what that means exactly. Her primary care dr consulted with an endocrinologist (too busy too actually see her) and he's the one that said the rest of the thyroid has to come out. Health care is just so complicated, isn't it?


----------



## Granfan




----------



## Granfan

Bloodwork was done when daughter saw surgeon. Office called and told her to take 75mcg Synthroid. She did and thinks her wheezing is worse because if it. Has anyone experienced worsening asthma symptoms from Synthroid?


----------



## luvmarypoppins

Granfan - no advice on that, but hoping your dd's asthma will get under control and that she will start feeling better.

My one ds has asthma, so in additional to her regular asthma meds does she have the machine she can use. I know when my ds has gotten bronchitis with the asthma, he really needed to rest and take a couple of the treatments and that helped him alot. 

Are they wanting to do a chest x ray etc?


----------



## Granfan

luvmarypoppins said:


> Granfan - no advice on that, but hoping your dd's asthma will get under control and that she will start feeling better.
> 
> My one ds has asthma, so in additional to her regular asthma meds does she have the machine she can use. I know when my ds has gotten bronchitis with the asthma, he really needed to rest and take a couple of the treatments and that helped him alot.
> 
> Are they wanting to do a chest x ray etc?



She had a CT scan of her lungs when she was in hospital for asthma/bronchitis. That's when they found the thyroid tumor. At the ER they always tell her she needs that machine at home, but the pulmonologist she saw last week didn't prescribe it. He just ordered a repeat of the lung tests she already had at the hospital. Supposed to get them done Monday. Thanks for your concern and so sorry your son has asthma, too.  I hope you are having a good day today.


----------



## Christine

Granfan said:


> She had a CT scan of her lungs when she was in hospital for asthma/bronchitis. That's when they found the thyroid tumor. At the ER they always tell her she needs that machine at home, but the pulmonologist she saw last week didn't prescribe it. He just ordered a repeat of the lung tests she already had at the hospital. Supposed to get them done Monday. Thanks for your concern and so sorry your son has asthma, too.  I hope you are having a good day today.



Having the nebulizer at home is a good thing if you get into trouble.  But using a nebulizer on a routine basis is NOT the way to treat asthma.  Hopefully your daughter's pulmonologist has her on a daily asthma prevention drug.

As for her increased symptoms on thyroid medication.  First, as you know, that could be just some sort of weird coincidence.  Depending on where you live, the pollen counts are OFF the charts in many places.  This is never good news for asthmatics.

Secondly, you say that she has been prescribed 75 mcgs of thyroid medication.  Are her thyroid numbers indicating that she is deficient in thyroid hormone?  If they are not showing low thyroid hormone, taking that much thyroid medication will quickly make her hyper.  I could easily see in a person who is sensitive in the lung/broncial area that this could cause a tightening sensation or even bronchial spasms.  Hyperthyroidism affects EVERY single part of your body and revs it up.


----------



## hcmommy

Hope everyone is doing okay 

I finally saw the endo today after six weeks of waiting.  I am scheduled to get a fna biopsy on Thursday at 4 pm on the largest nodule.  He said he's not worried about the other two.  I'm a little nervous about the biopsy but I am so glad they had a spot for me this week.  I'm ready to get this over with so I know what I am dealing with.  Anything I should listen for or ask during the biopsy so I can come back here and report instead of waiting for the results   I hope the don't take forever to give me the results.  Does the biopsy hurt?


----------



## mrsklamc

The FNA did not hurt at all; they put lots of lidocaine on it and it would not have been a big deal at all for most people. I personally had a weird reaction but not likely you will find it to be a big deal at all. My surgeon called with the results the next day, but the person doing the procedure told me later she had known right away she was looking at cancer.


----------



## luvmarypoppins

As Micayla said, it really doesnt hurt too much. I had one for the cancer and then I just had one last month for the swollen lymph node in my neck.

They might have you put an ice pack on it and take something like tylenol etc.

Just stay still and turn your head to the L or R.

My lst one was worse because he called it "shaking it up", because he wasnt getting enough cells in the needle.

I dont think that is the normal thing, just with me, anything that can goe wrong, does go wrong. Doctors love me

Wishing you all the best. I think the hardest part is waiting for the results.

Hang in there!


----------



## Granfan

The last blood test did show low hormone and the 75 mcg may have been to prepare for sudden cut off of all production (surgery to remove rest of thyroid and some lymph nodes is tomorrow). Yes, she has been a little hyper and not sleeping much. She had the lung tests Monday and also found out her heart is enlarged probably from all the stress her body has been 
going through. Pray all goes well and thank you so much for your concern.


----------



## luvmarypoppins

Granfan said:


> The last blood test did show low hormone and the 75 mcg may have been to prepare for sudden cut off of all production (surgery to remove rest of thyroid and some lymph nodes is tomorrow). Yes, she has been a little hyper and not sleeping much. She had the lung tests Monday and also found out her heart is enlarged probably from all the stress her body has been
> going through. Pray all goes well and thank you so much for your concern.



Prayers for your dd tomm. Praying the surgery goes well and she has a good recovery.  Wishing her all the best. 

She is so blessed to have you there for her. I wish my mom was alive with all I had to go through. I could have used some mom hugs for sure, but my dh was the best.


----------



## Christine

Granfan said:


> The last blood test did show low hormone and the 75 mcg may have been to prepare for sudden cut off of all production (surgery to remove rest of thyroid and some lymph nodes is tomorrow). Yes, she has been a little hyper and not sleeping much. She had the lung tests Monday and also found out her heart is enlarged probably from all the stress her body has been
> going through. Pray all goes well and thank you so much for your concern.



Hope all goes well tomorrow.  We will be thinking of your daughter and please let us know when you get some free time.


----------



## hcmommy

*Granfan*-Hope everything went well 

I finally had the biopsy yesterday.  I think the Lidocane shot and the tech. holding the u/s thing on my neck was the most painful part.  It was no walk in the park but I had made it out to be so much worse in my head than it actualy was.  They took five samples and I'm guessing the cells were coming out easily because he was never on any section for too long and didn't have to pump around much in there at all.  You can see my nodule from the outside and it was really easy to get to they said.  I was so scared I was going to move or swallow while the needle was in there! I felt weird after and my neck was sore.  It hurt a little to swallow.  Still a little soreness today but not as bad as yesterday.  Now I wait for a week for the results, oh joy.


----------



## luvmarypoppins

Granfan - hope your dd is doing well post op and not in too much pain

hcmommy - hope the pain and swallowing issues have subsided and that you are doing well too.


----------



## Granfan

Thank you all for the prayers and good wishes. Daughter is recovering vey well! Already off pain med, eating, at home. I'm so relieved. Prayers worked!!


----------



## Christine

Granfan said:


> Thank you all for the prayers and good wishes. Daughter is recovering vey well! Already off pain med, eating, at home. I'm so relieved. Prayers worked!!



Glad to hear it.

The pain goes away pretty quickly with thyroid surgery.  I remember my surgeon tellling me that the day off and after surgery my pain would be about a 10 and then very rapidly, like the next day, I would be down to a 2.  He was right.  I think a used Tylenol for a day and that was it.


----------



## mrsklamc

It's a good thing my nurse MIL was here to tell us to lay off the pain pills - I was terrified of pain and only needed them for a day or two. I would have taken them for the ten days, or whatever they gave me, and DH would have gladly fed them to me!

Glad to see that the surgery and biopsy went well. I know waiting is awful.


----------



## luvmarypoppins

I am going to the oncologist on thurs. I am hoping that she sticks to her original plan of just the thyrogen and blood testing.

I am sure she will read the ent's note about the lymph node,biopsy and path. I am hoping she will agree that if the path was negative then she wont have to do the lid and scan this year.

And if she wants to do a scan then I will tell her she will have to wait until I am back from Disney etc.

Also, you will all hear about the latest thyrogen supply update.


----------



## mrsklamc

luvmarypoppins said:


> I am going to the oncologist on thurs. I am hoping that she sticks to her original plan of just the thyrogen and blood testing.
> 
> I am sure she will read the ent's note about the lymph node,biopsy and path. I am hoping she will agree that if the path was negative then she wont have to do the lid and scan this year.
> 
> And if she wants to do a scan then I will tell her she will have to wait until I am back from Disney etc.
> 
> Also, you will all hear about the latest thyrogen supply update.



When are you going to Disney? I am so jealous that you get to go to your 'happy place' so often.


----------



## Christine

mrsklamc said:


> When are you going to Disney? I am so jealous that you get to go to your 'happy place' so often.



Me too!!!!


----------



## luvmarypoppins

mrsklamc said:


> When are you going to Disney? I am so jealous that you get to go to your 'happy place' so often.



We usualy go twice a year. Dh has a reallly good job.
We are going May 20-28th. 3 days at the Grand Floridian and then 3 days at the Beach Club for FREE!! Cashing in dh frequent flier miles. Guess going to China once a month is very good, even though I miss him so much, then 2 more days at the Yacht Club with an AP discount. Also meeting up with 2 gals and maybe more from the breast cancer thread on the cb.

I guess after I almost died and dh saw me in the coma, we both see how every day of life is so precious. He treats me like the cancer Dh also gets 5 weeks of vacation a year which he never uses. Also with all the 3 ds at home, we neeed a vacation away from them for sure. I am hinting for the food and wine which we have nevver been too. No wine though for us. Figure that could be free too at the Swan.


----------



## hcmommy

My biopsy came back benign .  The nurse said the Dr. just wants me to come back in a year for another ultrasound.

I'll still be following you guys but thanks for answering all my questions, I appreciate it.


----------



## Aburns8

hcmommy said:


> My biopsy came back benign .  The nurse said the Dr. just wants me to come back in a year for another ultrasound.
> 
> I'll still be following you guys but thanks for answering all my questions, I appreciate it.



That is great news!


----------



## mrsklamc

hcmommy said:


> My biopsy came back benign .  The nurse said the Dr. just wants me to come back in a year for another ultrasound.
> 
> I'll still be following you guys but thanks for answering all my questions, I appreciate it.



Such good news!


----------



## mrsklamc

luvmarypoppins said:


> We usualy go twice a year. Dh has a reallly good job.
> We are going May 20-28th. 3 days at the Grand Floridian and then 3 days at the Beach Club for FREE!! Cashing in dh frequent flier miles. Guess going to China once a month is very good, even though I miss him so much, then 2 more days at the Yacht Club with an AP discount. Also meeting up with 2 gals and maybe more from the breast cancer thread on the cb.
> 
> I guess after I almost died and dh saw me in the coma, we both see how every day of life is so precious. He treats me like the cancer Dh also gets 5 weeks of vacation a year which he never uses. Also with all the 3 ds at home, we neeed a vacation away from them for sure. I am hinting for the food and wine which we have nevver been too. No wine though for us. Figure that could be free too at the Swan.



DH and I both work at non-profits...they are great to us in many ways but unfortunately the $ is just not stellar. It's ok though cause DH doesn't really care for Disney. Poor guy,being married to me!


----------



## luvmarypoppins

hcmommy said:


> My biopsy came back benign .  The nurse said the Dr. just wants me to come back in a year for another ultrasound.
> 
> I'll still be following you guys but thanks for answering all my questions, I appreciate it.



Great news. So glad it worked out well for you.


----------



## luvmarypoppins

So I am back from the oncologist. She pulled up my path report because the ent didnt send her the note. I saw him dictate it into his machine, so it must have got lost along the way. Oh well, that is why I like to do everything at the hosp. since they can just pull it all up etc.

I am going to have the pregnancy blood test lst on June 17th. They said their age limit is 60, then the lst thyrogen test and then the 18th the next thyrogen and she said just go to the regular lab to get the lblood test the next week. I have to look at what day.

She said I dont have to see her for another year since the endo orders the bi yearly blood work and sonograms, yeah!!

And in the cancer sucks dept, (taken from the breast cancer girls), in the room next to me is a boy about 14 who has lost most of his R arm. I am asssuming due to bone cancer. His whole family was there and being very supportive. Of course. I almost cried. My heart went out to them. 

So here is the Thyrogen information:

The original thyrogen plant is located in Boston. The new one is in the midwest, I think she said Omaha??. Well the Europeans decided they didnt want their thyrogen from Boston, but wanted it from the new midwest plant, so there is/was a 3 month back log. My oncologist is the 5TH LARGEST provider of thyrogen in the whole US!! She says the stafff is very proactive about havng a good supply and then she herself has an "in" with the supplier, so there s never a need to worry where I go. And there you have the insider and latest thyrogen news.


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## mrsklamc

Went to the endo Tuesday. She said everything looked good, & that we would schedule a scan for August. She did say there was a thyrogen shortage and that they were supposed to be back in stock in July, so I am praying for that. I don't know what I would do if August came and it weren't available. I don't want to wait.


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## luvmarypoppins

mrsklamc said:


> Went to the endo Tuesday. She said everything looked good, & that we would schedule a scan for August. She did say there was a thyrogen shortage and that they were supposed to be back in stock in July, so I am praying for that. I don't know what I would do if August came and it weren't available. I don't want to wait.



glad to hear that things are going well and look on schedule for you. I agree iwth the not waiting part. I dont know where you get the thyrogen from endo, hosp etc. I would definetely ask about their supply and their supplier etc. I would think that if the supply is limited they would give it to patients getting rai lst. So you arent doing the diet? or are you? I saw some good recipes for banana bread and some kind of muffins. The banana bread was also using egg whites and home made applesauce.

Oh and Christine, are you the one with the wacky cake recipe. You are FAMOUS! As I said before, no cocoa, chocolate etc sutff is allowed from my onc. on her diet sheet. She is so strict.


----------



## Christine

luvmarypoppins said:


> Oh and Christine, are you the one with the wacky cake recipe. You are FAMOUS! As I said before, no cocoa, chocolate etc sutff is allowed from my onc. on her diet sheet. She is so strict.



I used to make the Wacky Cake about 15 years ago because my son had an egg allergy. I guess it works for the Low Iodine Diet...

Glad to hear all is well with everyone.

I have to have an upper endoscopy next week.  This is not my first time but that doesn't stop me from being a wreck about it.  I have some SERIOUS White Coat Syndrome these days.  I normally have great blood pressure but during my visit with the gastro it was at 130/80 and all we did was have a conversation.  I'm such a freak!!!!  

Anyway, back in March I started getting episodes of severe acid/burning in my stomach.  I am already on Prilosec because of stomach troubles many, many years ago so I was "burning" through that.  It's not hearburn because it's in my stomach.  I was hoping she'd just give me more meds but, no, she wants to take a look.  Back in 2007 I had an upper endoscopy just to have a check and they found gastritis and bleeding (and I wasn't having symptoms).

I am kind of scared about it.  I hope there's nothing serious but I am letting my anxiety run away with me.


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## CanadianPaco

I just happened upon this thread. (DH lost his job 4 months ago and I guess I was drawn by the title of the thread - Coping and Compassion) But I had thyroid cancer almost five years ago but never saw this thread. I found my lump by accident - DH and I were at the movies - a Pirates of the Carribean one to be exact. It was super cold with the a/c so I was all curled up and had my hands by neck to keep warm and I found my lump. Ultrasound revealed one node - 1.5cm. Blood work was completely normal. But the fine needle biospy revealled Pap.Thyca. I had my entire tyhroid removed (they found a 4mm and a 5mm node on the other lobe, thank goodness it was entriely removed) A few months later I had my RAI and have been going for annual checkups since. 
I have read through much of this thread but I am glad to have found it.


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## luvmarypoppins

welcome CanadianPaco - sorry to hear about your dh job. I pray God will open up something new for him soon. Wishing him all the best.  Its good to hear you are doing well with your check ups. Can I ask what your initial RAI dose was?

Well I am back from the ENT. Wow, I cant believe all the instruments and stuff they have at that place. This was the chairman of the whole place who I saw this time. A litle grumpy. Only met him once before. Saw my other 2 surgeons on the way in. Had the hearing test. That was funny and went well they said. The new dr. thinks my dizziness is getting better. Could be caused by a virus, hmm, infected lymph node? Saw the other ent surgeons note that I was positive for the vertigo on the r side. He showed one exercise I can do to try to move the crystals in my ear. He said the others I cant do because of my neck dissection. So now its ust watch and see. I dont have to come back. He kept moving my headneck around and I had to put on these blurry goggles. He told me good luck with my thyrogen testing next month. He wanted to know why I saw a thoracic surgeon. I told him originally they thought the mass was in my chest and not my neck. Wow, he must have looked all the way in the back of my chart..the very beginning. So its off to disney on friday for dh and I. I need a break from all this medical stuff for sure.

Hope everyone is doing well


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## mrsklamc

I'm doing well, but my 3 year old nephew fell today and has a minor skull fracture and a bad concussion. Prayers would be appreciated, from those that pray!


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## luvmarypoppins

Micayla, so sorry to hear that. Just said a prayer for your little nephew. Is this the one family you went to Disney with?


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## CanadianPaco

luvmarypoppins said:


> welcome CanadianPaco - sorry to hear about your dh job. I pray God will open up something new for him soon. Wishing him all the best.  Its good to hear you are doing well with your check ups. Can I ask what your initial RAI dose was?



Hi Again
My RAI was 100mcg. It'll be 5 years now. I have 2 nodes that they are following. I try not to worry - just live in the moment. Cancer and unemployment teaches you that!


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## itsdisneytime

Okay -- I have another question for you all ... 

As some of you know, I had Papillary Thyca - and had 2 of my parathyroid glands stollen during my surgery which left me not so luckily as a hypo calcimia, hypo parathyroid mess ... numbness (check) tingling (check) irritability (check) tired (check) IBS (check) you name it and ive been dealing with all sorts of *** new normal *** as I call it for me ... I deal with all these things on a daily basis and dont worry about them anymore so much but ..... 

recently as of 1 month now Ive been dealing with the WORST swollen feet and calves ever.. I remember last summer this same thing happened but it didn't seem to hurt as much.  I am 18 months post surgery and so last summer would have been my first thyroid free summer and besides being hot as heck I dont remember the feet bothering me this much.  

I went to my doctor 2 days ago and they told me this was because my thyroid level was so off -- they upped the synthroid and said its normal ... although they threw in a few words about being concerned with adema (sp?) and cellulosis or cellulitis?  I swear, Im pissed at myself because I let them get away with talking in circles and talking about me and not to me and then I walk away feeling like Im not really ever going to get any better.  My feet are cracking open from being dry and swollen and in very bad shape ... it almost seems like my skin is turning into something leathery and brown ** very different then what Ive ever known it to be ** and despite the fact that I am soaking my feet, keeping them up when I can and also putting bag balm on them at night with socks on to help keep moisture in ... there seems to be nothing that is making them soft and healthy again?  

Anyone dealt with this?  they will NOT give me lasix or any water pill either!


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## luvmarypoppins

Shannon - I havent had any of those problems, but I know dischick had her parathyroids damaged too during surgery or removed because of the cancer?

I know they had to up her calcitrol but I think it was because of the numbness and tingling, I dont remember her mentioning swelling.

Were you seen by a regular dr. for your symptoms or an endocronologist. I always go to my endo for all the thyroid stuff as I think my gp dr. is clueless about this stuff.

What was your symthroid dose that they uped it from and to? I know it does take a while for your body to adjust to that. Are they doing any blood tests etc?

Wishing you all the best.


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## itsdisneytime

Hi - para's were damaged in surgery (doctor thought they were lymph tissue and sent it away to be tested only to find out it had para tissue in there)
unfortunately my state of VA says I cant sue for that -- but all my problems have been related to horribly low calcium not my cancer they cut out of me.   
I see an Endo for everything BUT this swelling i went and saw a normal doctor for and they were the ones telling me to increase syn. from 200mcg to 225 mcg - i know it can take 6 weeks for it to do its thing and they actually thought about hospitalizing me but they opted to not do so because I am young and they think my heart is handeling my low blood calcium and high tsh alright for now.   I think my tsh was 67 or something ... all i know is he said it was high which meant my thyroid was 6 times lower than it should be.?..


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## Christine

itsdisneytime said:


> Hi - para's were damaged in surgery (doctor thought they were lymph tissue and sent it away to be tested only to find out it had para tissue in there)
> unfortunately my state of VA says I cant sue for that -- but all my problems have been related to horribly low calcium not my cancer they cut out of me.
> I see an Endo for everything BUT this swelling i went and saw a normal doctor for and they were the ones telling me to increase syn. from 200mcg to 225 mcg - i know it can take 6 weeks for it to do its thing and they actually thought about hospitalizing me but they opted to not do so because I am young and they think my heart is handeling my low blood calcium and high tsh alright for now.   I think my tsh was 67 or something ... all i know is he said it was high which meant my thyroid was 6 times lower than it should be.?..



If your TSH is/was 67 and this TSH has been going on for sometime, there is no doubt in my mind that this could be the cause of your lower extremity swelling.  

I was only VERY hypo for 6 weeks.  I read up on hypo at that time and how it causes swelling at the wrists and other joints.  I had a pretty bad case of carpal tunnel by the end of the 6 weeks but fortunately it was reversed when my medication was resumed.

If you are at 67 on 200 mcg of Synthroid I'm not confident that a one-dose-up adjustment is going to cure you of this problem; however, it is the right way to go about increasing meds--you don't want to do too much too fast.

You really need to get your endo to aggressively manage this TSH issue.  You should NOT be having to live like this.


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## mrsklamc

luvmarypoppins said:


> Micayla, so sorry to hear that. Just said a prayer for your little nephew. Is this the one family you went to Disney with?



Sorry- didn't see this right away. Yes, he is one of my sister's twins. He was so adorable. Went on his first ride at Disney, got off, walked right up to his parents and said "May I please have my ears now?"

But he is doing very well...was pretty sick the first day but now they just have to keep his head safe while he heals. Thanks for the prayers!


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## DisMomme

mrsklamc said:


> Sorry- didn't see this right away. Yes, he is one of my sister's twins. He was so adorable. Went on his first ride at Disney, got off, walked right up to his parents and said "May I please have my ears now?"
> 
> But he is doing very well...was pretty sick the first day but now they just have to keep his head safe while he heals. Thanks for the prayers!



Saying a prayer for your Nephew.

Question>>>> How often do you all get your levels checked?  I just had my 6 month check-up (had 1/2 my thyroid removed 1 1/2 years ago) and I forgot to get the bloodwork done.  I have another appt (with an ultrasound) in 6 more months.  Should I go get the blood work done now after-the-fact or wait until my next appt time?


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## Christine

DisMomme said:


> Question>>>> How often do you all get your levels checked?  I just had my 6 month check-up (had 1/2 my thyroid removed 1 1/2 years ago) and I forgot to get the bloodwork done.  I have another appt (with an ultrasound) in 6 more months.  Should I go get the blood work done now after-the-fact or wait until my next appt time?




When I was early on in my journey, I would have my TSH checked quarterly, and my thyroglobulin checked every 6 months.  After my TSH appeared to be stable, I got it checked every 6 months.  Only recently (this year), I have moved to a one year cycle.  But I am 16 years after diagnosis.  My endo only wants to see me once a year and we will do TSH, thyroglobulin, and ultrasound.  Of course, if i feel "off" I am told to come in.


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## 1Grumpy9

Since I am new to this board, I just came across this thread!!!  What a great idea!!!

Here is a little background on me:

When i was 7 years old, I didn't grow an inch, so this was a concern to my doctor.  They tested me and I was Hypothyroid.  I lived with this for most of my life and my family doctor said that there would come a day that I would want my goider removed.  The last couple of years prior to my surgery in 2007 my friend that worked for a neck surgeon would tell him about me clearing my throat and losing my voice all the time.  She knew my situation with my thyroid.  He told her that I needed to get in to see him as soon as I could.  I had to fight with my family doctor to go see him and after a 3 month horror with a endocrinologist (who said I was diabetic or I needed gastric bypass surgery) to go to the surgeon.  Within 3 weeks, I was scheduled for surgery.  After my surgery my doctor came in and explained to me that my thyroid was the size of 4 knuckles on one side and 3 knuckles on the other and had a hook around my esophagus.  He said I would have been killed in 6 months if I wouldn't have had the surgery.

After surgery I had no complications until I came home...I woke up 48 hours later and had tingling in my face and arms.  Once I called the doctors office, I went back to the hospital.  Here when I had my surgery, they had to take my parathyroid and my blood calcium had dropped.  When I got there my number was at 2.2 (it should be around 7.0).  I stayed another night in the hospital.  

Now almost 4 years after surgery, I still deal with low calcium days (which I just take some Tums to help this) and I get my numbers tested every 8 to 12 weeks because I have had problems with consistancy of numbers.  And with the amount of calcium I take (around 2500 mcg a day) I have problems with absorption issues.  I just went to the doctor's the other month and she asked if I wanted to try a new medicine that is made for people with absorption problems.  It is called Tirosint.  I am taking less medicine now, and I am going back in July for a number check.  It will be 3 months into my new medicine to see what my numbers look like.

Since I have been on the medicine, I have been feeling soooo much better!!!!  I had been on Synthroid since I was 7, so I don't know if something happened that my body just wasn't absorbing the medicine (and I was letting it dissovle under my tongue).  I can tell already that this new medicine is helping me.

I hope this helps some of you with some options since I have been through almost everything!!  LOL!!!


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## dischick4778

Hi All,  just checking in.  mrsklamc - hope your nephew is doing better!  Saw some posts about paras being damaged and in my most recent visit with my surgeon he informed me it doesn't look like mine will be working right ever again.  They apparently did not re-implant properly.  I am on calcitriol and if I don't take it I can tell.  The tingling and numbness is ridiculous.  And it's getting harder as my son gets heavier.  So I must take it daily in order to feel right and will likely have to do so for life.

Coming up on my one year scan soon and dreading the diet.  The timing sucks.  We are going to Disney June 7-14 and I will start the diet June 15 for a scan the week of June 27.  What sucks is we have a wedding on June 26 and I'm in the bridal party.  I am thinking I will have to call the hall and let them know I'm bringing my own food.  What else can I do?  I can't cheat for the day right?  I have no idea how much of an impact one small cheat would have but obviously I don't want to mess with my health.  

The only other option is to push the scan back until 2 weeks after the wedding giving me 2 weeks to diet but then my endo will be out on maternity leave.  And I'm really comfortable with her and not sure I want a substitute giving me my results.  As I said, not good timing.  

At my last endo visit she said my thyroglobulen was down to 700 (was 3000 last summer when I first found out about the cancer).  Good news that its going down, I just can't believe it takes so long to get to 0.

Anyway, hoping everyone is feeling good!


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## 1Grumpy9

dischick4778....I am on Calcitrol also...I notice when I don't take mine also.  The other thing I take to help my calcium level is Calcium Cabonate (aka childrens Milk of Magnesia).  I am to take a full tablespoon every day, but there are days that my GI system cannot handle that and I substitute a day of that a week with 2 extra strength Tums (1000mcg ones).

I have talked to my endo about the shots for hypocalcemia, and she said that they are not yet approved for long term use.  They are finding that after 2 years of use, cancerous tumors are forming on the bones.  So until they come up with a solution, I am on this regiment for a while.

I just know with my situation that I have to spread out my dosages of my Tirosint and my calcium because the calcium supplement will block the thyroid meds from absorbing into my body.

As soon as I head for a check up and get my newest numbers on the new medicine, I will check in!!!  Until then...I hope everyone's numbers stay normal and those that are having low days...stay positive!!!


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## luvmarypoppins

Hi Everybody, did you miss me??   Well here is a little disney report - it was hot. Loved the Grand Floridian, one word for that place - money, loved the beach club and didnt like the Yacht Club - that place has really gone downhill. Saw the star wars parade. That was fun. Tried for the first time - citricos for our anniv. - fantastic, hollywood brown derby - good, flying fish and captains grill - both terrible,.

Now back to the real world  - I did feel dizzy sometimes during my trip although not  bad. My joints are aching. I know the endo wants me to have that reclast infusion but I am holding off until dh and I talk to her about all the terrible side effercts I have read about.  

My thyrogen starts June 16th I think. 

dischick - when I had the first diet, I had to go to our churchs 40th anniv. dinner. It was at a restraunt with a catered buffet. At least they sat me far away from the food. I made sure I ate befoe I went and just bought some gingerale (My onc. says no to the water too) and I think I brought some fruit and nuts. It was hard but I got through it. 

I have seen the thy ca cookbook has some banana bread and muffin recipes using home made applesauce. It sounds good!! Of course I love both of those. Are you allowed to have chocolate/cocoa etc. M onc. said no, but if you can, try Christines wacky cake recipe! 

Last year I pigged out a disney after the diet and scan! So you can have lots of fun doing yours before! At least its the summer and you get lots of choices. 

I think my best advice is to mix it up so you dont have diet "groundhog day" as the one girl wrote. Just alternate foods and color,teture etc. Like 100 flavors of chicken breast, , with honey,orange marmalade, with tomatos and peppers etc. 

At least this year I can actually have jello and canned chicken soup, that was all I wanted last year when I had the shots and of course they were not allowed, but I was ready with the no salt home made chicken soup etc.

Hope everyone is doing well.


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## mrsklamc

Feeling good and nephew is doing well-- just waiting to see if the Thyrogen is in stock for August.  

Luvmarypoppins, I am glad you had such a great (if hot) trip. I know it will be years before we go again, so it's nice to live vicariously a little!


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## Christine

Citricos is my overall favorite restaurant in Disney. LOVE it.


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## dischick4778

luvmarypoppins - glad you had a great trip!  We are leaving next Tuesday and I can't wait!  We are staying at AKV but having dinner one night in the Grand Floridian, I'm excited to see it.  Thanks for the food advice.  I think I'm making it worse than it will really be.  I'm just enjoying eating normally and not looking forward to being on the diet at all and most especially on my friend's wedding day.  But it's a small sacrifice for my health.

1Grumpy9 - I didn't even realize there was a calcium shot.  I take the calcitriol plus 1500 calcium every day.  The calcium is annoying since it cannot be taken with other meds and I tend to forget it, but I'm making an effort to be better with it.


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## 1Grumpy9

From what my endo told me the calcium shot is mainly for sever osteoporosis patients and hasn't been approved for more than a 2 year use.  She told me that the only way she would give it to me is if it was my last two years of life.


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## luvmarypoppins

Well if you all dont have anything better to do with your time, you can go on over to the Breast Cancer Thread on the Community Board on pages 200 and 201 you can see some pictures of me. You will figure out which one is me by the lovely neck dissection. Oh and to you young ones, I am old enough to be your mom.


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## mrsklamc

Just got a letter from my health plan that thyrogen is moving up to 'tier 4' which is the lowest level of coverage. They suggest I talk to my doctor about switching to an alternate drug. Isn't that nice of them?


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## dischick4778

Just an update on the wedding food situation, I called the catering hall and the chef got on the phone and asked me to send him the thyca cookbook.  He said he would make sure he had a meal for me on the diet.  There are some wonderful people in this world.


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## luvmarypoppins

mrsklamc said:


> Just got a letter from my health plan that thyrogen is moving up to 'tier 4' which is the lowest level of coverage. They suggest I talk to my doctor about switching to an alternate drug. Isn't that nice of them?



Wow, that really stinks! So would you go the cytomel route again. I dont know how much each shot is, but I heard one of the onc. nurses tell me once, wow, this stuff is really expensive!

 Is it something like $600? 

Can your dr. appeal for you? So I am guesssing this change will take place before you're scheduled to get it?


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## luvmarypoppins

dischick4778 said:


> Just an update on the wedding food situation, I called the catering hall and the chef got on the phone and asked me to send him the thyca cookbook.  He said he would make sure he had a meal for me on the diet.  There are some wonderful people in this world.



wow, that is really sweet. I think my biggest concern would be any cross contamination with the prep and people handling salt. It sounds like they are really being accomodating to you which is so nice for sure!

I would also verify the final meal with them etc. and ask them about the prep procedures, like a seperate area etc.

I hope you have a great trip!


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## dischick4778

luvmarypoppins said:


> wow, that is really sweet. I think my biggest concern would be any cross contamination with the prep and people handling salt. It sounds like they are really being accomodating to you which is so nice for sure!
> 
> I would also verify the final meal with them etc. and ask them about the prep procedures, like a seperate area etc.
> 
> I hope you have a great trip!



After my initial excitement, I did get a little nervous.  But it would be nice not to have to bring my own food to a wedding.  We will see, I will be sure to call and confirm and might bring something as a just in case.  

I am so excited for our trip and am going to enjoy every meal knowing that when we return I start the diet.


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## mrsklamc

luvmarypoppins said:


> Wow, that really stinks! So would you go the cytomel route again. I dont know how much each shot is, but I heard one of the onc. nurses tell me once, wow, this stuff is really expensive!
> 
> Is it something like $600?
> 
> Can your dr. appeal for you? So I am guesssing this change will take place before you're scheduled to get it?



Last time my doctor mentioned $900 but the insurance ended up covering it for a $60 co pay. The change is scheduled to happen just before I need it so I contacted my dr's assistant and asked if we could order it in advance. (we ordered in Dec. for my Jan. test. She said she can....IF it's available. 

Oh well. Que sera, sera!


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## mrsklamc

luvmarypoppins said:


> Wow, that really stinks! So would you go the cytomel route again.?



Forgot to answer this part. Depends on how expensive it gets as I'm sure health care costs will continue to climb. Right now, for $600-$900 we'd probably just pay it. I mean, how do they expect me to put a price on essentially two weeks of my life?


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## luvmarypoppins

Micayla, are you doing the diet again too?  Well if you are paying for the thyrogen, do you think they will give it to you at cost? I would seriously ask about that for sure. I dont know how much they mark the stuff up etc.

I am getting nervous about the testing. I always do this anyway. O.K. I admit it, In  2 days I ate an entire leftover chocolate bunny that ds21 said he did not want from easter.

Also, and christine, what is your opinion on this? In July I have to go for a sono and more blood tests. I know I am now on a 6 month schedule for that with the endo but it seems like its too close to the tests I  will have just had. I know my onc. said after this test, she will only look at what the endo orders I think? So I am wondering if a 6 month blood testing and sono schedule seems like "enough" with my agressive variant?

My endo did make the comment, well since yours is agressive, thats why you are on the 6th month schedule, so after 2 years out, normally is everyone on a 1 year schedule etc?


----------



## Christine

luvmarypoppins said:


> Micayla, are you doing the diet again too?  Well if you are paying for the thyrogen, do you think they will give it to you at cost? I would seriously ask about that for sure. I dont know how much they mark the stuff up etc.
> 
> I am getting nervous about the testing. I always do this anyway. O.K. I admit it, In  2 days I ate an entire leftover chocolate bunny that ds21 said he did not want from easter.
> 
> Also, and christine, what is your opinion on this? In July I have to go for a sono and more blood tests. I know I am now on a 6 month schedule for that with the endo but it seems like its too close to the tests I  will have just had. I know my onc. said after this test, she will only look at what the endo orders I think? So I am wondering if a 6 month blood testing and sono schedule seems like "enough" with my agressive variant?
> 
> My endo did make the comment, well since yours is agressive, thats why you are on the 6th month schedule, so after 2 years out, normally is everyone on a 1 year schedule etc?




I think a 6-month schedule is good.  Essentially they are keeping you on the schedule that the newly diagnosed are on.  There's probably not much point in doing it more so.  I guess you are wondering why it's not more spaced out?  Maybe you could work on that.  Like having the sono/blood tests exactly 3 months after the other tests, and then the other tests 3 months after that?


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## mrsklamc

I may be missing something but I think this would be an interesting diet recipe:
http://ohsheglows.com/2011/01/31/15-minute-creamy-avocado-pasta/


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## luvmarypoppins

Micayla - I think dischick is going to love this recipe since she loves avocado and pasta. 

Well in 2 more days its thyrogen for me. I always get nervous and then since I actually have to go into the hosp to get it, its even worse because it just reminds me of all my surgical "experiences", coma etc. I am sure my dh will be asking if we can go eat lunch in the cafeteria. 

I hope the nausea and headaches arent too bad. I already told dh I am not cooking those 2 days. He is flying in tomm. night from China, sleeping his jet lag off and then taking me thurs. morning.


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## luvmarypoppins

Well Thyrogen #1 is done. I have a slight headache now. And the regular ringing in my ear seems to be very annoying right now. 

I told the nurse we will see if I get a headache or nausea, she said, oh are you one of those "sensitive" people. I said well if I get those symptoms again, then yes, I guess I must be!


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## dischick4778

mrsklamc - thank you for sharing the recipe, this looks wonderful!  It's only day 3 of the diet and I'm so done with it.  There's only so much chicken and lettuce I can eat.  So this pasta looks like a yummy option.  

luvmarypoppins - I'm still kind of new to this, what is the thyrogen shot for again?  Is that to prepare you for the scan?  If so I think that's what I will have in a couple of weeks.  I have four hospital visits scheduled for the week of June 27th and they told me I'd be getting shots since I'm still on my meds.  Does it really make you feel horrible?  I'm not looking forward to it.

Disney trip was wonderful!  It was so emotional for me since the last time we were planning to go I was told I had cancer weeks before we were set to leave.  I enjoyed every minute and my family did as well.


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## luvmarypoppins

dischick - so glad you had such a wonderful time. I cried when dh and I got back there after my surgery and it took a year. I had a pet scan that dec. and that is when dh and ds who was in hs went with us then. I knew things were not good but boy was I dumb back then. I didnt even know what a pet scan was actually for. Hmm, guess I didnt know they already knew I had cancer and were just seeing how far it had spread etc.

So I guess your visits are going to be thyrogen 1 and pregnancy blood test
thyrogen 2
rai tracer. I think my tracer dose was 4.17
scan

I know all hosps./drs. do things differently. When I got the tracer I had to not sleep with dh for 2 days, (Yeah he was gone at a conference) no being by kids, but at least I didnt have the food prep precautions and I had to double flush. Worst was the mom because they said they didnt want anything left in my colon. Also the drinking to flush it out. 

Micayla, did you have to do that too?

I think this nurse said the other nurse would call me with the results, maybe by next wed. after my blood test, I hope so, as dh is leaving wed night on another trip. 

Wishing you all the best


----------



## luvmarypoppins

Well thryrogen #2 is done. The injection site does not hurt at all. I had a different nurse this time, maybe that helped? I still have the ringing in my ear, louder than my normal. 

I read on the thyca website that another girl was also having ringing her ear. The headache is very slight so that is good, Or maybe I am having a headache because my refrigerator has probably finally died for good right now:

The nurse told me to call on Friday for my results. Oh great, m dh will be in seattle or san francisco. I know the other nurse said wed. I didnt want to argue with her yest. but I thought that was just way too early for the results.

dischick  - How goes the diet? Hang in there!


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## mrsklamc

luvmarypoppins said:


> Micayla, did you have to do that too?



Yes...Sorry, the DIS has not been sending me update notifications....& I missed that you asked about the diet. Yes, I will be dieting and taking thyrogen again in August, assuming the thyrogen is available. 

Been a rough week - we have 2 ferrets and one of them went in for a minor procedure and ended up having a large cancerous mass. I feel so bad- just thought he was fat. The vet had told us he was overweight just in Feb. and to get him exercising more. He's been at the vet since his surgery Tuesday. He had a little ferret epidural, blood transfusions from the vet's two ferrets, and now he's on a little ferret IV! She talked about chemo depending on the results of the biopsy but I'm not sure I'm willing to put him through that. Can you imagine being hypo, not knowing when it would end, and not knowing why you were going through it?

Dischick - the thyrogen didn't make me really sick, just tired the days I got the shots.


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## michelleiada

Wow, this is an interesting thread that I never knew existed.  I never thought to look on this board.  I am a nurse and work in a Diabetes and Endocrine Center with two Endocrinologists and have for 8 years.  We see tons of thyroid problems, including Hashimotos Disease, Graves, hyper and hypothyroidism, thyroid nodules, goiter, thyroid cancer, thyroiditis....  I wish you all well with your health.


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## dischick4778

Found my paperwork for my upcoming scan.  It says Day 1 blood work including pregnancy test and thyrogen injection.  Day 2 2nd thyrogen injection 0.9mg.  Day 3 blood work and 4.0 mCi of I-131.  Day 5 blood work and 45 minute scan, results on the spot.

They haven't said I shouldn't be near my husband or son but I guess they will tell me when I get there.  I had a feeling I shouldn't be picking up my son and getting too close to him, but I never thought about not sleeping in the same bed with dh.  

The diet is awful this time around.  I think it's because last time I felt so horrible after the surgery that the diet just didn't matter.  But now that I am feeling well I want to eat normally.  I have lost 4 lbs in the 4 days I've been on it.  I don't like eating like this and so I end up not eating much at all.  I am craving dairy and breads.  The worst part is my low calcium is really bothering me.  I usually eat a pretty high calcium diet including cheeses, milks, yogurts, etc.  But since I cannot eat any of those things right now I am having a hard time finding enough foods high in calcium to help my numbness.  Ugh, can't wait until July.


----------



## luvmarypoppins

dischick - does the hosp. where you had your surgery have a cancer resource center etc. Maybe you could request some info from the dietician in conjunction with your endo etc.   I am sure its hard for you but if you mix up colors on the plate I think it helps. Like a chicken, almond, strawberry salad etc.

The bread/crunchiness stuff I just used the unsalted matzoh or the air popped popcorn in the microwave.
Make it look colorful! Like maple glazed pork chop,sweet potatos and corn.
Maybe a kabob on the grill - chicken,peppers, pineapple with basmati rice
beef with zuchini (yellow and green) with some no yolk noodles. A stuffed pepper etc.

If I got sick of a cold salad for lunch then do something hot every few days. At the end I just did peanut butter  on vegetables one day for lunch and the home made soup with the noodles and steamfresh vegs. I was getting lazy.

And I think it helps if you dont have to do the cooking for your dh and ds. I also found it better not to eat with them in the room. I was just too  much on me. The 2nd week towards the end I said just go get your own food and eat it yourself in the other room. It helped me a lot.

Well I had the blood test today, so now its wait and call the rad. onc. nurse on Friday. My dh wont be here and 2 of the ds will be away too on friday, so I am either gonna be celebrating or crying a little. I guess dh is going to have to listen to me long distance.


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## mrsklamc

My furbaby did not make it. And I am so much more devastated that I thought I would be. I didn't bawl like this through all my own cancer stuff. 

I FREAKING HATE CANCER.


----------



## luvmarypoppins

mrsklamc said:


> My furbaby did not make it. And I am so much more devastated that I thought I would be. I didn't bawl like this through all my own cancer stuff.
> 
> I FREAKING HATE CANCER.




Micayla, I am so sorry to hear about your furbaby. Its ok to cry beause I am sure he/she was so much a part of your life. I cried when our guinea pig died. I would have hated to see my pet suffer. I agree with you totally, cancer sucks!


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## dischick4778

mrsklamc said:


> My furbaby did not make it. And I am so much more devastated that I thought I would be. I didn't bawl like this through all my own cancer stuff.
> 
> I FREAKING HATE CANCER.



  So sorry to hear this.  It's not easy to lose a pet, they are part of the family too.


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## dischick4778

luvmarypoppins said:


> dischick - does the hosp. where you had your surgery have a cancer resource center etc. Maybe you could request some info from the dietician in conjunction with your endo etc.   I am sure its hard for you but if you mix up colors on the plate I think it helps. Like a chicken, almond, strawberry salad etc.
> 
> The bread/crunchiness stuff I just used the unsalted matzoh or the air popped popcorn in the microwave.
> Make it look colorful! Like maple glazed pork chop,sweet potatos and corn.
> Maybe a kabob on the grill - chicken,peppers, pineapple with basmati rice
> beef with zuchini (yellow and green) with some no yolk noodles. A stuffed pepper etc.
> 
> If I got sick of a cold salad for lunch then do something hot every few days. At the end I just did peanut butter  on vegetables one day for lunch and the home made soup with the noodles and steamfresh vegs. I was getting lazy.
> 
> And I think it helps if you dont have to do the cooking for your dh and ds. I also found it better not to eat with them in the room. I was just too  much on me. The 2nd week towards the end I said just go get your own food and eat it yourself in the other room. It helped me a lot.
> 
> Well I had the blood test today, so now its wait and call the rad. onc. nurse on Friday. My dh wont be here and 2 of the ds will be away too on friday, so I am either gonna be celebrating or crying a little. I guess dh is going to have to listen to me long distance.



Thanks so much for the great ideas.  I am trying to mix it up a bit.  I had an unsalted peanut butter and fruit preserve sandwich on unsalted matzoh yesterday.  I don't think I've ever eaten anything quite so dry but it wasn't that bad.  I am doing whatever I can to make sure when I get tested on Monday that I am as low iodine as possible.  I cannot do this an extra week!

Thanks for the support.  It's hard because my dh keeps telling me "well you have to do it, so just don't think about what you're eating".  It's so easy for someone not going through it to give advice.  Only someone who has been through it truly understands.  Thanks group!


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## luvmarypoppins

Well the onc. nurse called a day early today and told me...GREAT NEWS, Praise God the tests came back really good she said, less than 0.2 I think she said?

So now in a few weeks, its more blood tests, a sono and seeing the endo. I am wondering if she will ever lower my synthroid. Its always at 200. In aug. or sept. I want to go see a cardiologist to check things out because I heard such a high dose can affect your heart etc. She was the one who gave the cardiologist name to me anyway. 

dischick - is this week end the wedding? How goes the diet. Thinking of you

Micayla - you should probably hit the berry farm again and freeze some like you did before!!

Hope everyone is doing well


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## dischick4778

luvmarypoppins - Great news!  Glad to hear it!!  I wonder about lowering the synthroid dose at some point as well, I'm 225.  But I guess they are just being cautious.  

The diet is not getting easier but I'm dealing with it.  I keep getting leg cramps in the middle of the night and I think it's the lack of calcium.  Can't wait to drink some milk!  The wedding is this weekend and the chef has called me several times to confirm.  I am interested to see how the food will taste prepared by a professional chef.  It will definitely be better than what I make!


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## mrsklamc

Luvmarypoppins- I feel so awkward always calling you that, what's your first name, please? Or an initial?

I came here to see if you've heard back- I see you did last night and I didn't get an email. SO glad to hear you got a good result. 

Strawberries were early here this year so we have them fixed up and frozen already. 

Endo's office was going to shoot for ordering the thyrogen at the end of June, haven't heard anything though-- and doing better with the loss of furbaby. Will hurt for a long time I imagine.


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## mrsklamc

Front page article on CNN.com about a civil rights leader with thyroid cancer:

http://www.cnn.com/2011/HEALTH/06/25/behind.mom.dark.glasses.due/index.html?hpt=hp_c1

More awareness is always a good thing!


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## mrsklamc

I also ran across an article yesterday where a woman said her cat was having trouble with its thyroid and that made it urinate more frequently. Now, I've had a lot of trouble from my thyroid but that one is new on me!


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## luvmarypoppins

micayla  -you can call me lmp or if you really want to call me something else, I guess Maryann is ok too. The breast cancer girls say either one depending. You can look at me on page 200 of that thread. pn the cb. Oh, I am the one with the neck dissection 

I was reading that article. That poor lady has been through alot for sure. She is really a survivor and fighter in more ways than one. I felt bad about her having more rai and the spread etc. It reminded me when I was in the hosp. with the rai overnight. They quickly went in and out the room , scanned stuff with the gieger counter, wore special booties, disposable stethescope etc. I felt so bad when I read her family had to hold her hand with special gloves etc. 

Well I am scheduling my sono and latest blood work for the next week or so. I think I go to the endo around July 11 and she likes everything to be done 2 weeks before the visit etc.

Dischick - anxious to hear how the wedding went and just curious if they told you not to be by pregnant people etc.Wishing you all the best tomm and praying you will get a 0 too and a clean scan.

Christine - maybe you can give your insight. Why are there so many differences in things etc. I guess I am relating this to a "standard" standard of care. Like I was reading on the thy ca website one girl said they didnt even tell her she had to do the diet before rai etc. They just said "if you want to" etc.

Do they have certain standards etc? and why do they vary so widely? Like for my tracer dose it was
double flush, no sleeping with dh, I cant remember the feet away thing, food prep was o.k., no going by children or pregnant women etc., had to take mom before or after the scan, I cant remember.etc

Obviously, others have different standards of care etc. I think it would be so much better if most of the stuff was universally accepted etc.


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## mrsklamc

LMP- cause they are PRACTICING medicine...

Am I missing any reason this wouldn't work for the diet?:

http://nuttykitchen.com/2010/06/01/coconut-whipped-cream/


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## luvmarypoppins

Well I looked at that. It says dairy free. Does it contain carragean (sp?) because I know that is not allowed. It does look yummy and a good substitute if it meets all the requirements. Can you ask thyca. directly about it?

All I know is I am so glad I got to call that dietician when I was doing the diet lst time. I drove her nuts for sure! And then I found out my ins. would not cover it. So I sure got my $112.00 worth for sure. I got the initial one on one consultation then all the phone calls and my rad. onc. own personalized diet no no list  and then they told me to go look at the thy ca cookbook too and that was frustrating looking at 2 lists because I couldnt have the cocoa powder that was listed in Christines wacky cake etc. 

Again like in my previous post, I think hospitals should make a dietician available to you to go over this stuff regardless of whether your ins. pays or not. It should just be a level of acceptable care. Crap, I am sure they go over low salt diets with heart attack people, no sugar stuff for diabetics. 

I think they shoud train all the dieticians on the lid. They knew how to cook it at my hosp because the dietician told me they had to teach them etc. In the hosp. I got oatmeal or fresh fruit, lunch was a salad and that was pushing it with some deli roast beef. I even asked the rad. onc, is this acceptable because its not on your list etc. I was wondering about the salt. Oh and they gave me no oil etc. For the dinner I had mashed potatoes, small chicken thigh and carrots and frresh fruit. So they knew what they were doing.  Also like dischick said about the chef. I actually mentioned to the rad. onc. that it would be nice if they could cook us something at the hosp and we would pay for it etc. I asked even if there was a chef in the area who did this etc . because they told me there was a certain bakery by the hosp. who knew about the diet and made certain things etc.

There is a restraunt a few towns away owned by one of the ds former teachers. His son cooks and he was on the show "Chopped". I am sure he might be interested in something like this. I am not thinking of the money aspect of it, more of the way in being a mission to people. He is really religious. 

I think we need all the help we can get for sure.


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## Christine

luvmarypoppins said:


> Christine - maybe you can give your insight. Why are there so many differences in things etc. I guess I am relating this to a "standard" standard of care. Like I was reading on the thy ca website one girl said they didnt even tell her she had to do the diet before rai etc. They just said "if you want to" etc.
> 
> Do they have certain standards etc? and why do they vary so widely? Like for my tracer dose it was
> double flush, no sleeping with dh, I cant remember the feet away thing, food prep was o.k., no going by children or pregnant women etc., had to take mom before or after the scan, I cant remember.etc
> 
> Obviously, others have different standards of care etc. I think it would be so much better if most of the stuff was universally accepted etc.



I think there is no "standard" because there is no hard science.  While, in theory, we know WHY we do the LID, there is no proven science really showing that it is as effective as not doing the diet.  Many top thyroid doctors believe that using the LID provides for a more effective treatment/scan but it hasn't been proven.  So some doctors just don't bother with it.  It causes no harm, except mental anguish, on the patient so I'm not sure why all doctors don't embrace it.

As for the RAI guidance, I was once told my a nuclear physician that these precautions some patients are given are WAY over the top and not required, in his opinion.  Again, there's no hard science stating that double flushing helps and many doctors think people are just nutso when it comes to radiation.  The only consistent information I ever got on RAI that was agreed to by every nuclear physician I came in contact with was to keep children and pregnant women 8 feet away from your neck.


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## mrsklamc

My personal thought on why they are so careful with the nuclear med stuff is that there are always people who think the rules don't apply to them, so they are EXTRA cautious as a buffer. No science there at all, just my opinion.


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## luvmarypoppins

My dh has worked with radiation before in his job and he talked with an expert at his job who originally did stuff in another country. My dh talked to the rad onc. and she said, I think medical and you think scientific.

But dh insisted I stay overnight in the hosp. Partly because he knew about the effects of the large dose and my medical stuff.

The onc. told me the hosp. was fined by the NRC? for nuclear stuff so they are always careful. Hmm, really? The one guy didnt wear the booties in the room with me, someone next door opened my door and that was not allowed. It had the radiation sign on it. They sent up my food one time on non disposable serving ware (that was suppose to be not allowed either). I had a big blue lidded barrel in my room to put everything in. 

Can you only imagine what people do at home? I know there is a girl on you tube who was in the army in Germany and she said the quarantine is VERY strict there etc. 

They had offered to stop by the house and pick up my garbage. I dont know why they said that? did they do that with everyone? Dh told them what he was doing etc. and they were fine with it. They said around here it can make the detector go off at the landfill etc?

I also read that in places like NYC they want to check into radiation rules after RAI because some people take public transportation etc. That sounds like fun, being next to a nice 200 rai person on a bus and them not telling you etc. They said they tell patients not to do this, but they do etc.


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## dischick4778

The wedding was wonderful.  I did miss eating all the fun cocktail hour foods, but the salad and chicken the chef made me were tasty.  

Today is day 3 and I'm getting anxious.  I want Friday to be here, the scan to be clean, and to eat a nice juicy cheeseburger with fries that night.  Is that too much to ask for?  I have little patience for the diet this time around in case you didn't notice.  I'm hungry and I lost 12 lbs, the whole thing is making me quite irritable.  

The shots on day 1 and 2 did not bother me much at all.  I felt tired but other than that I was fine.  Just took the low rai about an hour ago and they told me not to pick up my son until Friday.  They said he should not be near my neck. 

Hope you're all doing well!


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## luvmarypoppins

Hang in there dischick! You are almost done. There is light at the end of the tunnel!! You can do this!!

I remember after my scan we went to a restraunt. I told the waitress, I am going to be ordering ALOT of food. I think I said, I am REALLY hungry.

I lost 10 lbs. the last time. The onc. nurse told me that is about the average they see. The lst time I lost 20 lbs. 

Just curious if that is the only precautions they gave you, just not to pick up your son?


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## dischick4778

Thanks for the support!  It's so hard, because I want to believe after Friday this will be over for a while.  But then the Dr. says today "well that's what we're hoping for".  Of course we all know that they could tell me they found more cancer, but why not be a little positive please.  It has been an insane year, give me something to look forward to.  Sheesh.  

But this thread and the people here have been so helpful in dealing with this.  So thank you!!

The Dr. today told me not to pick up my son and not to have him anywhere near my neck.  I specifically asked if I should not sleep in the same bed as my husband and Dr. said the dose wasn't high enough to have any impact on DH.  He did say not to hug any pregnant woman as well.  But that was it.  

When I had my treatment last year I was quarantined in my mom's house for the week but that was a pretty high dose.  This dose is only 4.0 mci.


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## dischick4778

Great news, my scan came back clear today!  I'm not sure exactly what the number means but last year it was 1.15 and today it was 0.  There were no noticeable traces of the cancer.  Woo hoo!

The Dr did say I still had antibodies but he was not overly concerned about it and said we would just monitor that with blood tests.  Last year that number was over 3000 and today it was 714.  

Thanks again for all of the support, I feel relieved and am enjoying time with my family.


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## Christine

Congratulations!!!  Hope you are enjoying some delicious food.


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## luvmarypoppins

dischick - I am so happy to hear your good news.. I am sure you have already enjoyed a cheeseburger and fries!! 

Next week I am calling to rearrange my endo visit so dh can be with me. One time the endo said if I did good for the lst 3 years then she felt like I would be good. So I will ask her as well as dh if she will lower the synthroid, she always says no. So I will have the sonogram and blood work in the next couple weeks.


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## dischick4778

Happy Fourth of July to all!

I have been celebrating all weekend enjoying good food.  I think I put 3 lbs on in two days.  Yum!!  

Hope you are all enjoying as well.


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## mrsklamc

Well-- The Dr.'s assistant said she would try and order the thyrogen at the end of June, so I emailed her yesterday and she just responded that she had submitted my insurance info to the Thyrogen company and would let me know as soon as she hears anything. I am tempted to tell her to skip it and do the cytomel-- just because of my fertility issues I don't want anything holding me up. What do you ladies think you would do?


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## luvmarypoppins

Micayla - do you mean you dont want to wait to see if there will be a delay in getting the thyrogen versus just knowing you can go another route, because as soon as the scan is completed you want to TTC?


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## mrsklamc

luvmarypoppins said:


> Micayla - do you mean you dont want to wait to see if there will be a delay in getting the thyrogen versus just knowing you can go another route, because as soon as the scan is completed you want to TTC?



Yes- well not as soon as, b/c you have to wait two months to get the tracer dose out of your system. But I'm trying to decide whether to wait on the thyrogen or just go ahead and do 4 weeks cytomel, 2 weeks with nothing.


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## luvmarypoppins

Well, you did do that before and wasnt it so draining on you? I have never gone that route, so I cant comment on that part of it. (cytomel). I guess if you could handle the diet and those side effects at the same time, it would be ok. I dont think I could physically or mentally do it both at once with all the symptoms you described you had before. 

Can they guarantee you that you will have the thyrogen? Remember I specifically asked the rad. onc. about this and she gave me the whole US thyrogen update.

 dischick also had no problem getting the thyrogen but she lives in the ny metro area too. so maybe we have a good supplier as my rad. onc said. 

If they are getting it for you from the midwest plant than it should be ok? Also I think you would probably have a better chance of getting it from a hospital who has a cancer center or large teaching hosp. etc. Like the largest hospital by you or within distance, in indiannapolis?


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## mrsklamc

I would have done ok on the cytomel/withdrawal process last time if it weren't for the fact that the lab tech screwed up the blood test, and THEN we had to wait to get in for another round of radiation once my blood labs came back.


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## luvmarypoppins

Christine should chime in here with her word of wisdom for sure, and Christine if you do, OT, what kind of car did you end up getting? My ds just leased the hyundai sonata. I dont like the leather seats.

Well in my own endo horror story. I just called to change my visit. Its for July 18 and dh will be out of here so I thought no problem. She says, I will give you the next available date, I said thats nice , She .?says...December!! I said, wiat what about August? She says the dr. will not be here. She said do you have diabetes? I said NO!! I have cancer!! So what, diabetes takes a higher precedence there? I said look, I need a sono, blood work etc. and that is to be done 2 weeks before the visit so I am not scheduling that unitl I get a new date. So I said then dont cancel that date yet etc. So she says a secretary in the endocrionology dept. will call me back. Gheesh. I didnt know it would be so hard to get a visit. Maybe its just her since she is the only female endo besides one of the chief ones. And there goes another day in the...General Hospital or aka How I cant get a stinkin appt. visit with the endo.


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## Christine

luvmarypoppins said:


> Christine should chime in here with her word of wisdom for sure, and Christine if you do, OT, what kind of car did you end up getting? My ds just leased the hyundai sonata. I dont like the leather seats.


Okay, I'll chime in!!  I haven't been reading in a few days, sorry about that. 

Micayla, if you think you can tolerate the withdraw/Cytomel scan, I would do it.  However, I am not a HUGE fan of Thyrogen as it hasn't been good for me.  You seemed to weather through the last time pretty well, except for at the end when it got screwed up.  If you think the whole Thyrogen thing is going to mess you up, then skip it.  I do wonder, though, how will going hypo affect fertility issues and pregnancy issues?  Will that delay you further also?  Takes a good while for the body to recover from hypo. I don't overly like the idea of conceiving when the body is not at its peak.  So, you see, I'm torn too.

As for the car, I'm paralyzed on that one.  I think I'm really leaning toward the Elantra; however, it's so popular I can't even look at one on the lot.  Which also means I'll pay sticker--something I.NEVER.DO.  The Sonata's okay.  What don't you like about the leather seats?  Is the leather worse than any other leather you have experienced?  I have never had leather seats.  My friend has leather in her Camry but does not like it either.  I'm a dirty slob so I think leather would work well for me.

I also have a bad cold right now.  Can I get some Coping and Compassion!!!!!  I haven't had a cold in YEARS.  They are awful.


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## dischick4778

I guess I didn't know, but is there a thyrogen shortage?  It just seemed like the norm at my hospital.  There wasn't even a question that I would not get it.  The Dr. told me the alternative was 4 weeks off synthroid which as he put it would be torture.  Is this a NY thing?

Also, does having thyroid issues contribute to not being able to conceive?  I have asked both my endo and obgyn about this and neither one indicated this as a concern for me having future children.  They only said we would have to adjust my meds once I was pregnant.  We aren't thinking about it right now as my son is only 1, but I was thinking it would be nice in the future.  I didn't even realize this was a possible issue.  

Luvmarypoppins - where do you live and why is it so challenging to get an appointment?!  That is a terrible way to treat you.  I hope it works out for you.


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## mrsklamc

Dischick- don't worry about fertility. LOTS of women have kids after thyroid cancer; the only risk I have found is a slight-very slight- increased risk of alopecia. And I only found that because I research obsessively. They will want to monitor your levels closely. My fertility issues are a 'bonus' problem apart from my cancer.

I did ask the Dr's assistant if I could start taking Cytomel. She said she would get back to me no later than Tuesday-- I'm sure they are swamped between the holiday and the fact that the doctor's only in three days per week normally.

And YES, Christine, you can have compassion! I HATE colds.


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## Christine

dischick4778 said:


> Also, does having thyroid issues contribute to not being able to conceive?




The only way they would contribute is if your TSH is out of whack.

I don't know what Micayla's issues are specifically, but if she goes off her meds for 4-6 weeks she's going to get VERY hypo.  When she goes back on her meds, it will take a long while for her body to "right" itself.  I would think that this could definitely complicate getting pregnant temporarily.


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## mrsklamc

Dr. says the thyrogen will be available this month "as far as she knows" and she's "OK with waiting." 

Though I don't have most of the traditional symptoms, they think I may have PCOS, which is unrelated to the thyroid stuff. I just lost the medical/environmental/genetic lottery.


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## luvmarypoppins

Micayla - I think our hosp. literature says something like thyrogen allows our patients to have a good quality of life while undergoing treatment? Something like that, or does not intfere with life?? I would have to look up the exact words. But you get the jist.

I would pick the thyrogen in a minute, but that is just me. You have to do what is best for you.

Christine -I just didnt like the feel of them, but the moon roof is nice.

dischick - I live about Mid Suffolk. You can get to my town by either exit 62,63 or 64 on  the expressway. I go to SB. Home of the best ideas in medicine, well thats what is says on tv

Well in my endo saga. I am getting the blood work tomm., monday dh is taking me for a sonogram. Only bad thing is its in the hospital. Its the only available appt. I dont like going there, too many bad memories, but our friend is having surgery and maybe we can see how he is etc. Then the 18th I asked my oldest ds to take me to the endo. So he will ask his boss on tues. He better say yes. So I had to call and say keep, keep the visit etc. They must think I am a looney tune! And now our compressor has blown out of our central ac unit. Can I just say its hotter than blazes here. I dont think this is too good for the synthroid. I am sweating most everything out. I had cramps yest. so I ate a banana today. Worse, the guy cant get the part for a week since our unit is so old and dh refuses to get a whole new unit, just too expensive he said right now. Oh well.


----------



## luvmarypoppins

Well I just got back from the blood test and after it was over and I was signing the papers, I realized that she didnt check off the vitamin D blood test,

Hmm, I questioned? the tech. She said, yes she wrote your vit d deficiency diagnosis but didnt order the test.

So she told me to call the nurse on monday and ask if they want the test to be run. 

I dont know if my endo wanted it done or not. I think she always does it, so I really cant remember. I am also wondering if she is a bit rushy with the patients. I am seriously going to be looking at all my paperwork before I leave the office at the check out desk.


----------



## luvmarypoppins

Chatty one here

Tomm. ds19 is taking me for my sono as dh forgot he has a meeting. Good since he wants to volunteer there anyway, helps with getting into the nursing program possibly. Also our friend is having surgery so I might pop into the surgery pre wait area and read the board and see how he is etc.

Here is my question. When you have a sono, how far up or down do they go on your neck., I looked at the order and it said check lymph nodes in neck and thyroid bed. for lymph node mets.

My question and I am going to ask the sonographer is since I had the level 2 infected lymph node will they go that high up, its under my ear etc, where does the neck lymph nodes start, level 2 or 3. I dont know if the endo knows about this (the rad. onc. also didnt get the surgeons note about his biopsy etc.). I guess I just want to cover all my lymph node bases if I can etc.

Any thoughts.


----------



## mrsklamc

I don't think they went up as high as under my ear.


----------



## dischick4778

luvmarypoppins - I have a brother in law in suffolk around exit 63.  He is a deputy sheriff so if you ever get pulled over on the LIE by a Grauso tell him you know his SIL Jenn.  

As for the sono, I had a neck sono in my endo's office back in April.  It was literally 5 minutes long.  It did not go up to my ear.  And I apparently had stage 4 aggressive with several tumors also in my lymph nodes.  Good luck tomorrow!


----------



## luvmarypoppins

Well I am back from the sono. I remember why I hate going into the hosp. seeing way too many sick people and doing way too much walking. My tech was so nice. She even talked to me alot. mostly about my neck, surgery etc. I told her about the lymph node and asked her - how high will you go. She said - as far as the ultrasound will let meS o guess what, she went right up behind both ears! My gosh, my regular lady at the other place never does that and she never even speaks to me. I think this girl will go on maternity leave, so I probably wont get her again. So I guess its back to my regular girl.

On the way out I saw my stomach surgeon. I said hi, but I guess he didnt hear me, my voice was so bad. Ds said, why didnt you say hi, I said I didIts def. the heat etc. He had on green scrubs, carrying a back pack, white lab coat and funniest was he was carrying an edible arrangement. I know his one sec. is in the hosp so maybe its her b day etc.

I also left messages and asked them to call me saying if they were going to be doing the Vit D testing on the blood draw from sat. No news yet. So I guess if that whole thing gets messed up and she wants it, I might have to have another one. 

Next monday is my endo visit and then I am scheduling a mamo and the eye specialist appt. That one should be interesting. They say maybe the rai messed my eye up?

Jenn - OMG! You must come out to 63. If you bring your ds I guess we could hit Chuck E cheese or something kid friendly. My one ds works in a bowling alley. I dont think thats too kid friendly for a 1 year old. Hmm, we must meet sometime! 

I am getting so dehydrated. I taught vbs at my church today and the ac in the room really doesnt work. It was 83. I come home and my broken central ac house is 83 too!

Also this week I am taking the synthroid at 6:30 am instead Of my usual closer to 9 am. Anyone think this will be a problem. I dont know what the difference would be? I know they always say take it at the same time everyday etc.


----------



## luvmarypoppins

Well I got a surprise call from the endo yest. She told me she ordered the Vitamin D level so they are awaiting the results of that but all my tests are pretty good and my tsh is 0.02, so on Monday she said she is going to talk to me about lowering the synthroid.

She said then you can stop being so jittery and you are doing so well that is why I am lowering it. I do want to ask her what are the chances of the cancer coming back if she lowers it too much and its agressive etc.

She also said she saw the ent surgeons note and wanted a sonogram to see that lymph node. I told her I just had the sono on Monday, the one you ordered for me. (Guess she forgot that she wanted me to get it done every 6 months???)

Gheesh first she forgot the one lab and now she forgot she ordered the sono?? They keep records of all tests even ordered, its copied and put into your chart etc.

I am a little concerned about her "forgetfulness". 

So what if she lowers it too much etc? I dont want to go from totally hyper to hypo and get tired and gain weight etc. Also if its the wrong dose, I have to pay $25 for each script. And do they do blood work to check on the new level?


----------



## mrsklamc

LMP- I don't think taking your synthroid at 6:30 will matter too much for one week as long as it's still an hour away from food, etc. Your dose averages out over time so I think it will be alright.

I'm sorry for all the confusion with your tests. We really have to be our own advocates! I think I posted on here about how they were trying to put me on the diet in January when I wasn't having a scan, just a blood test!


----------



## itsdisneytime

I have been reading . .and im really reluctant to say this because you all don't know my personality well enough to know that I WOULD NEVER say anything to be intended as negative so please dont take this that way ... 


But ... you all make me scared.  I came to this thread at the suggestion of LMP and It has been helpful to a degree but at the same time, I am REALLY NERVOUS that I am not getting good care, but that seems to be the norm here unfortunately.  I'm seeing who is considered ""the best'" endo in town and he has been suggested to me by several folks who did not even know one another so i took that as a good sign.  

Simple facts are this:   I had papillary thyca 7/21/09 complete removal ... this july 21st will be 2 years .. ive consistently had low blood calcium due to 2 of my parathyroids accidentally being removed.   I have low vit d also ...

I take 250 mg synthroid
I take 500 mg calcium citrate x 4 a day (chewable pills)
I take .25 mg calcitriol x3 a day
I take 1 per week 50,000 btu vitamin d 

I dont have my stats in front of me but I will say I was going once every 6 weeks to endo and just last month he said i can come every 6 months ... reading here makes me wonder why i have NEVER had a scan, not a thyrogen or cytomil (sp) ... nothing other than the normal old blood work and seeing the endo in the office .... 

I asked my endo the other day if he can tell if my cancer is coming back and he quickly and very cockily said "" I KNOW IT ISNT"" your tsh is .5 .... if that is even what he said ... i just remember thinking .. okay, he knows it isnt but how do I know?   

I mean, in the end I know I should be talking to my doc and not relying on you all to give me info all the time .. but, do you think I should be kicking and screaming?   Also, im 37 and never had a mamo?   with a past history of cancer should i have one now?   

Im sorry, but if one of you all would even take the time to read this endless email and be kind enough to respond it would sure help me. 

xoxox


----------



## mrsklamc

It's so hard to know....I would just say, "I've been networking with other patients and it seems like most of them have RAI scans...I wonder why we aren't doing that." Or however you feel comfortable phrasing it. Doctors are busy but it is a MUST with me that I be able to ask them questions.

Yes, I think you should get a mammogram. Once you have had one type of cancer you are more prone to others.

Welcome to the thyroid thread!


----------



## luvmarypoppins

Shannon, Please, Please ask all the questions you want. We are here to support each other. I think I would be lost in my thy cancer journey if it was not for this thread.

You should ask your endo any question you want, its your body and health.

I think the scan is standard and I too would ask your endo why you did not have one? I know you mentioned that you had external beam radiation. Did he explain why you were having that course of treatment? Were you rai resistant?

I do take the vit. d pill too for the low level. I get that tested every 6 months and I also am 2 years out post op.

Dischick can maybe help more on the parathyroid stuff as she is dealing with this.

For 2 years out mine is pap with lymph node spread and agressive columnar cell variant stage 4 and my schedule is this:

Endo every 6 months - she will do all the blood testing, comp met. panel, tsh, t3 or T4, vitamin d level etc.  Also sonogram of the neck.

Rad. oncologist - once a year. Mine feels after 2 clean scans she will do a thyrogen stiumlated test, which I just had. Now I will only see her in one year with no testing being ordered by her.

My drs. have a thyroid cancer team, you have a surgeon, rad. onc. and endo assigned to you.   I go to a university teaching hospital. If you live near one it might be a good option for you if you do not like the endo you are dealing with. At the least they could review your records and see what kind of care you have been receiving and make reccomendations for you from there.

Hope this helped a little. Wishing you all the best. You are welcomed here


----------



## dischick4778

Just met with my endo today, first time since my scan two weeks ago.  She said she was happy that my scan was clean but we still have to be cautious because my antibodies were still in the 700 area.  They have definitely come down from the original 3,000 but she would like to see a low number around 0. 

She did however lower my synthroid from 224 to 200.  That is exciting to me.  I have been feeling stressed and nervous and anxious all the time so I'm hoping the slightly lower dose will calm some of this.  My endo said to come back in two months to check my blood with the new dose.  Every time she adjusts the dose I have to see her in two months to see how the blood levels look.  She also said that if the antibodies are still a high number she will recommend another scan next year.  

As for my paras, yes I did have trouble with the reimplantation.  I now take calcitriol twice a day and 1000 calcium and follow a high dairy diet.  I eat lots of cheese and yogurt and drink milk.  If I miss my dairy, like when I was on the LID I had terrible numbness in my hands, legs, and back.  It is not a good feeling.  

I personally think the scan is essential.  As you can see my antibodies are still high yet my scan was clear.  So the blood work isn't always an exact indicator that everything is good or bad.


----------



## Christine

itsdisneytime said:


> I have been reading . .and im really reluctant to say this because you all don't know my personality well enough to know that I WOULD NEVER say anything to be intended as negative so please dont take this that way ...
> 
> 
> But ... you all make me scared.  I came to this thread at the suggestion of LMP and It has been helpful to a degree but at the same time, I am REALLY NERVOUS that I am not getting good care, but that seems to be the norm here unfortunately.  I'm seeing who is considered ""the best'" endo in town and he has been suggested to me by several folks who did not even know one another so i took that as a good sign.
> 
> Simple facts are this:   I had papillary thyca 7/21/09 complete removal ... this july 21st will be 2 years .. ive consistently had low blood calcium due to 2 of my parathyroids accidentally being removed.   I have low vit d also ...
> 
> I take 250 mg synthroid
> I take 500 mg calcium citrate x 4 a day (chewable pills)
> I take .25 mg calcitriol x3 a day
> I take 1 per week 50,000 btu vitamin d
> 
> I dont have my stats in front of me but I will say I was going once every 6 weeks to endo and just last month he said i can come every 6 months ... reading here makes me wonder why i have NEVER had a scan, not a thyrogen or cytomil (sp) ... nothing other than the normal old blood work and seeing the endo in the office ....
> 
> I asked my endo the other day if he can tell if my cancer is coming back and he quickly and very cockily said "" I KNOW IT ISNT"" your tsh is .5 .... if that is even what he said ... i just remember thinking .. okay, he knows it isnt but how do I know?
> 
> I mean, in the end I know I should be talking to my doc and not relying on you all to give me info all the time .. but, do you think I should be kicking and screaming?   Also, im 37 and never had a mamo?   with a past history of cancer should i have one now?
> 
> Im sorry, but if one of you all would even take the time to read this endless email and be kind enough to respond it would sure help me.
> 
> xoxox



I don't want to scare you either but I do think your doctor is not being "on the mark" with you.  You should have had a scan and your TSH level tells NOTHING about if you have cancer or not.

Where are you in Virginia?


----------



## itsdisneytime

im in norfolk va.


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## Christine

itsdisneytime said:


> im in norfolk va.



Darn, I was hoping you were up my way!

Your treatment seems very non-standard to me but without you specifically asking your doctor why, we don't know the reasons.  It could be that your cancer was SO small, that he didn't feel the need for this sort of follow up.  That is done, when the cancers are "microcancers" however I have read that they are getting away from treating them so minimally because they have found that even people with microcancers have had spread to the lymph nodes.  

I know that it is VERY stressful to feel like you are not getting the proper treatment YET you don't want to challenge your doctor or make any changes.  It is hard.

When I was first diagnosed in 1995, there was barely and internet and certainly no thyroid support groups.  There was nothing out there that could tell me much about my disease or how I should be treated.  I live in a suburb outside of DC that has a pretty crappy hospital and is not known for great specialists.

I ended up with a local endo who, I swear, had never treated a thyroid cancer patient.  And my step-mother-in-law, who worked at the NIH in the endocrine pathology department would never come out and tell me she thought he was not the best choice for me because she didn't want to get in my business.

So I end up, at the beginning, being treatment incorrectly for a very small thyroid cancer tumor which resulted in me needing two extra large dose RAI treatments.  After a year with the clueless doctor and me deciding to see treatment at another facility, the nuclear technician kind of hinted at me that my treatment was "odd."  She gave me a name of a specialist and I went to him and never looked back.  I'm mad at myself for not being more aggressive in the early days (but I was too wigged out at that time) and, yeah, I've never gotten over my step-MIL not helping me more.

So, if you are feeling insecure about what your doctor is doing for you, I'm here to tell you that many of us have been in that boat and it is not a fun place to be.  But if your gut feels like something is wrong with it and you cannot get good answers from your doctor, there is NOTHING wrong with getting a second opinion.  Just make sure you go in there with your initial pathology report and a writeup of everything you've done so far.


----------



## luvmarypoppins

Well I am back from the endo. She said all my labs were good so she wants to reduce my synthroid from 200 to 175. I asked her if that is what she was doing to supress the cancer then would the cancer come back if she reduced the dose. 

She saidd she really didnt know so we would have to watch it carefully and so she will order the blood tests for 2 months and then the normal 6 month one. She also said she wanted the sono to be every year now. I told here I would definetely feel better with having one every 6 months, so she said ok, 6 months.

She also said that my bone fracture score is so high that if I fall down right now I will probably break one of my hips, so she really wants me to have the reclast infusion. I discussed with her the side effects I read on the internet and she said she does not know of anyone who had them more than a short while, the flu like symptoms and bone pain.

She said if the cancer didnt come back in 2 years I would be ok, and I am 2 1/2 years. I didnt want to argue with her, but originally she did tell dh and I it was 3 years and she only had 1 other patient now had this and he was a male so that is all she could compare me to etc. Not a good comparison.

I see her again in 6 months and she will call about the blood work and adjust it from there. I also told her about the little incident of waiting till december. She said, there is no way I would wait that long to see you, we would have worked something out. Ok. nice to know if that happens again, since it will probably be a snow storm during my next visit in Jan etc.

Christine..and she said she would be ok with my tsh being a 2 or 3, does that sound right? After she adjusts the synthroid.

She said all the tests indicate that there is no cancer in my body. Hmm, I think my ent surgeon said its the microscopic stuff that does not show up on tests etc. It was nice to hear that but I always keep thinking of stuff in the back of my mind, not like ever never, more like when and whatever

I just thank God for each day and the good reports so far. I will take what I get for sure. I dont want to ever seem ungrateful. I guess its always in the back of your mind. It never goes away. Just gets buried a little deeper for a while etc. Anyone else feel or think like this?


----------



## 1Grumpy9

I finally go back to my endo next Monday for a check up since it has been almost 8 weeks since changing to the new meds.  I can say now that I am feeling sooooo much better with the Tirosint rather than the Synthroid!!!  I don't get the muscle cramping.  I am a little more figity and I haven't been sleeping the best lately, so it is making me think that my dosage might be a little too high.  This is a new med, so it is a trial period since it is fairly new, but it seems to be better for me so far.  I was very lazy before starting this, now, it seems to have brought my energy back.

I still take the calcitrol (rocaltrol) 6 every day, but I have to watch that I don't take them too close to my Tirosint because it will cancel it out.  

I will be excited to see what happens with my numbers.  I am hoping they are back to a normal range and maybe we can lower my dosage a little bit.  As soon as I hear I will post my update.


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## luvmarypoppins

1Grumpy9 - So glad to hear the new med is working for you. Its good your endo is following you closely. I am sure you are glad to have more energy.

I am getting my synthroid lower, so I am hoping in about 8 weeks to be less hyper and have more energy too! We shall see.


----------



## Christine

luvmarypoppins said:


> Christine..and she said she would be ok with my tsh being a 2 or 3, does that sound right? After she adjusts the synthroid.


I admit I'm kind of surprised by this.  As low risk as I am and as far out from my initial diagnosis, my endo would like me to be more supressed (I am at 0.3).  My old endo "allowed" it also because I was low risk and I needed quality of life.  I don't think they would have been happy at all with 2 or 3.  I think a level of 2 or 3 might be fine once you are WAY out from diagnosis.  For instance, by the time I'm in my late-60s, say, it will probably be good for me to have my TSH rise a bit--less stress on the heart and bones.


----------



## dischick4778

luvmarypoppins said:


> I just thank God for each day and the good reports so far. I will take what I get for sure. I dont want to ever seem ungrateful. I guess its always in the back of your mind. It never goes away. Just gets buried a little deeper for a while etc. Anyone else feel or think like this?



Glad to hear your good news!  It's only been a year for me, but I feel very similarly.  Even though my scan was clear I still didn't believe it.  I kept thinking there must be something hiding, something so small they didn't see it.  It's not easy to believe but I suppose on times goes on and you continue to get good reports it gets easier.


----------



## luvmarypoppins

Christine said:


> I admit I'm kind of surprised by this.  As low risk as I am and as far out from my initial diagnosis, my endo would like me to be more supressed (I am at 0.3).  My old endo "allowed" it also because I was low risk and I needed quality of life.  I don't think they would have been happy at all with 2 or 3.  I think a level of 2 or 3 might be fine once you are WAY out from diagnosis.  For instance, by the time I'm in my late-60s, say, it will probably be good for me to have my TSH rise a bit--less stress on the heart and bones.



OK after reading what you wrote now I am kind of scared/upset that she would do that. She knows how agressive mine is. She even commented at the visit "You had a LOT of neck involvement" My endo looks pretty young. I would have to see her years of experience. I dont think she meant 0.2 or 0.3 because I am 0.2 already. She knows how bad my bones are right now and maybe since I am older she is doing this and she knows my familys heart history (everyone died from heart related stuff, my dad,mom and sister really early in life so maybe she is factoring that in??). Well I know she will call me in 2 months to go over the blood tests with the lower synthroid dose...

so WHAT do you suggest I say/ask her.?? I want to word it correctly!!

Her "reasoning" in doing this she said was all negative scans and blood tests, no recurrence,bad bone scan and she had referred me to the cardiologist before. (havent gone yet) She said I need to have less anxiety and more energy etc. I didnt even complain about this stuff to her. I only said my bones/joints hurt etc.

She said "we are going to do this very slowly".

So is going from 200 to 175 very slowly?


----------



## mrsklamc

LMP- I definitely feel like it never goes away and just gets buried. I hate it.

I did get called by the specialty pharmacy that ships the thyrogen today and it's on the way- scheduled for delivery the 27th. Copay went from $60 to $150 but it could be worse I guess.


----------



## luvmarypoppins

Micayla - I am so happy you are getting the thyrogen. It will make life easier on  the diet for sure. So sorry you have to pay that co pay. The things we have to do to be healthy right?

I saw they have some new recipes n the thy ca cookbook. I think its its banana bread and some kind of muffins made with homemade applesauce. That sounds good for sure!! 

I personally think doing the lid in the winter would be the worst. You could eat salad but its so cold out so you would have to make batches of home made soup and the fruit would revolve around oranges and clementines and apples and bananas.

Summer is def. the best!! And if you know you are doing it then you can freeze fresh veg and fruits ahead of time etc.

My synthroid went from a pink pill to lilac as they call it on the bottle. 

Well my next 2 appts. are a mamo and that eye specialist. She deals with thyroid eye diseases, so if something is wrong she should know. I plan to hopefully get these done in August. I have to see when dh is going to China again. Then in sept. the next blood tests and maybe the cardiologist and the reclast infusion. My head spins with all these drs. tests etc.


----------



## mrsklamc

DH is watching Master Chef. I want to see an episode where they have to cook for thyca patients!


----------



## Christine

luvmarypoppins said:


> so WHAT do you suggest I say/ask her.?? I want to word it correctly!!
> 
> Her "reasoning" in doing this she said was all negative scans and blood tests, no recurrence,bad bone scan and she had referred me to the cardiologist before. (havent gone yet) She said I need to have less anxiety and more energy etc. I didnt even complain about this stuff to her. I only said my bones/joints hurt etc.
> 
> She said "we are going to do this very slowly".
> 
> So is going from 200 to 175 very slowly?



Well, I can sort of see why she's doing what she's doing.  You are at risk for complicating factors (bone loss and cardiac issues).  She has to balance those risks against the risk of a bit higher TSH stimulating thyroid cancer growth.

Based on all her scans and lab work, she is not seeing any evidence of thyroid cancer in your body.  So, in her mind there is nothing to suppress and she's looking at that against some very real risks of heart and bone trouble.  I think that bringing your TSH up a bit and then closely monitoring you with Tg tests is a good compromise.  What you could do is see if you could keep your TSH at 0.9 or 1.0.  I feel LOADS better with a TSH of 1.0 but I try to go down a bit.

So, what you could say to her is:

"Doctor, I realize I show no evidence of thyroid cancer and you want to allow my TSH to rise; however, I am still very concerned that I may have stray cells lurking that are causing elevations in the Tg nor are showing up on scans.  I am worried that NOT suppressing my TSH could cause them to become active and get me in trouble.  What do you think about this?"


----------



## mrsklamc

I have never done the thyrogen and the diet at the same time; does anyone remember how long you are on the diet before you get the shots and when your scan is after that? I think the shots are on Mon. and Weds. but I don't remember after that. Maybe the blood is on Friday?


----------



## mrsklamc

Christine said:


> You will have one on Monday and on Tuesday.  They are to be 24 hours apart.  Mine were always done between 9:30 and 10:00 a.m.
> 
> Then on the Wednesday, you have to go have your blood drawn at around 24 hours after the second shot.  They will also give you your scan dose of RAI.
> 
> On Friday, you go and have your scan.



oh here it is...from the last time I asked


----------



## luvmarypoppins

mrsklamc said:


> DH is watching Master Chef. I want to see an episode where they have to cook for thyca patients!



Yes, we will get Jen's wedding chef in on this too! After all, he already has some experience!!


----------



## luvmarypoppins

Christine said:


> So, what you could say to her is:
> 
> "Doctor, I realize I show no evidence of thyroid cancer and you want to allow my TSH to rise; however, I am still very concerned that I may have stray cells lurking that are causing elevations in the Tg nor are showing up on scans.  I am worried that NOT suppressing my TSH could cause them to become active and get me in trouble.  What do you think about this?"



Yes, this sounds good. Now I have another question, after the 2 months she only has ordered a T3 and T4 and no thyroglobulin, is this right?


----------



## mrsklamc

Did you guys diet for two weeks prior to your thyrogen.


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## luvmarypoppins

mrsklamc said:


> Did you guys diet for two weeks prior to your thyrogen.



I dieted during it. I think it was a total of 15 days but she let me have 1 day off so it was 14 days. 

Did you have the thyrogen last time? I cant remember?

The lst time I got bad headaches and felt nauseous.

 2nd time I just felt a little nauseous and a slight headache. 

The 3rd time, this time, I really didnt have too many symptoms, just a slight headache and the muscle pain from the shot in one arm.


----------



## mrsklamc

luvmarypoppins said:


> I dieted during it. I think it was a total of 15 days but she let me have 1 day off so it was 14 days.
> 
> Did you have the thyrogen last time? I cant remember?
> 
> The lst time I got bad headaches and felt nauseous.
> 
> 2nd time I just felt a little nauseous and a slight headache.
> 
> The 3rd time, this time, I really didnt have too many symptoms, just a slight headache and the muscle pain from the shot in one arm.



I did have thyrogen but it was just a blood test, no scan, so no diet. 

I don't remember exactly other than I know I was really tired. I went home and slept, so this time I plan to just go home and sleep.


----------



## Christine

mrsklamc said:


> I have never done the thyrogen and the diet at the same time; does anyone remember how long you are on the diet before you get the shots and when your scan is after that? I think the shots are on Mon. and Weds. but I don't remember after that. Maybe the blood is on Friday?




Shots on Monday/Tuesday, bloodwork/tracer dose on Wednesday, scan on Friday.

LID should be done 2 weeks prior to ingesting the tracer dose on Wednesday.


----------



## Christine

luvmarypoppins said:


> Yes, this sounds good. Now I have another question, after the 2 months she only has ordered a T3 and T4 and no thyroglobulin, is this right?



In my experience Tg is generally only ever done at 6 month intervals.  It is not a level that makes rapid changes like TSH can.


----------



## dischick4778

luvmarypoppins said:


> Yes, we will get Jen's wedding chef in on this too! After all, he already has some experience!!



Ooh that would be great!  The other day an organization called my house looking for donations.  They claimed to provide services to cancer patients who can't afford supplemental necessities like ensure and other food related items.  Of course I went right into questioning with the guy.  I told him all about the LID and would this organization cover the cost of a nutritionist for the two weeks.  I said I would give a donation if Thyroid cancer was included.  He's looking into it.  Lol, it's amazing how sensitive we become to these things.



mrsklamc said:


> Did you guys diet for two weeks prior to your thyrogen.



I did the diet for two weeks prior to the Monday blood test/ shots then continued the diet for the week of shots/scan.  So for me it ended up being close to 3 weeks and a loss of 15lbs.  

Off topic - according to my endo she wants me to have a scan each year for the next 2-3 years.  What if I want to have another child somewhere in that 2-3 year time frame?  We are not ready now, but perhaps by next summer.  Would I start trying right after next year's scan? What if it takes time to happen?  Do I stop if we are getting too close to scan time?  I know it's my health and I'm happy to have the scan just not sure how to time this.


----------



## luvmarypoppins

Christine said:


> In my experience Tg is generally only ever done at 6 month intervals.  It is not a level that makes rapid changes like TSH can.




I typed while the labs were in the other room. 

O.K. I looked it up, she has ordered a tsh and T3, is that ok? (For the 2 month test to check the synthroid etc.)

She also gave me a copy of the labs I just had. I did notice my red blood cell count is too high out of range? Hmm, what is up with that? I may need to google. She didnt mention that one. 

And she didnt even to write my name on the sono script and then she only did 3 refills instead of 6 for my meds. What is up with this girl? aka my endo. I feel like she is getting so rushy rushy with the paperwork etc. I dont want her to overlook anything like the lab she forgot last time. etc.


----------



## luvmarypoppins

dischick 

Off topic - according to my endo she wants me to have a scan each year for the next 2-3 years.  What if I want to have another child somewhere in that 2-3 year time frame?  We are not ready now said:
			
		

> My rad. onc. said she believes in 2 clean scans so that would be 2 years and then after that just the thyrogen stimulated blood test. Because she said (and Christine said this is true too). There is no more information in a scan than would be in the blood test. And she knows mine is agressive like yours too. So she is saying the blood test is just as good as the scan etc.
> 
> I am not saying your endo or rad. onc. feels this way etc. But I guess it wouldnt hurt to ask them how they feel and what your future plans are etc.


----------



## mrsklamc

Dischick- I can only tell you what they have told me; 

Once my scan is clean, we have to wait 2 months for the nuclear material to clear my body. Then we'll start TTC again. She said we would scan again as soon as we were done breast feeding because pregnancy hormones cause growth and they would have that affect on thyroid cancer cells, too. Basically, they work in the testing around pregnancy. I would just give your endo a head's up so they can plan accordingly.


----------



## Christine

luvmarypoppins said:


> O.K. I looked it up, she has ordered a tsh and T3, is that ok? (For the 2 month test to check the synthroid etc.)




Sounds good.  My doc never orders T3 but I think it's a valuable test so you can see if you are converting T4 to T3 well.  Some people don't.

My doctor always seems to order a TSH and a Free T4.  Not sure why.


----------



## mrsklamc

I commented about the LID on Masterchef's facebook page, if anyone wants to go 'like' it...Probably won't work but you never know.


----------



## luvmarypoppins

mrsklamc said:


> I commented about the LID on Masterchef's facebook page, if anyone wants to go 'like' it...Probably won't work but you never know.



That sounds cool. I am not on facebook maybe I should be?? My ds have told me not to as a certain group of girls from my church are cliquey and dont invite me to any of their "gatherings". So the ds said, mom just stay off facebook because what you see will probably upset you etc.   I also do have a problem with everyone else knowing my personal business etc. so it might not be good for me etc.

Did anyone see the little blub on the Insider last night about Sophia Braga (sp?) from Modern Family fighting the "deadly" disease. It said, Sophia stated they cut my neck and now I am in remission.. Wow what a great bunch of info that was. Well Micayla, as you said before, any press is good. etc. They did say there will be an article in this weeks Parade magazine, so heads up. I will read it if its in my paper.

Oh and Micayla you are one of the lucky ones getting the thyrogen because I saw again on the thy ca website someone else was told no thyrogen for her, just cytomel because of the shortage etc. They couldnt get it for some lady etc.


----------



## mrsklamc

luvmarypoppins said:


> That sounds cool. I am not on facebook maybe I should be?? My ds have told me not to as a certain group of girls from my church are cliquey and dont invite me to any of their "gatherings". So the ds said, mom just stay off facebook because what you see will probably upset you etc.   I also do have a problem with everyone else knowing my personal business etc. so it might not be good for me etc.
> 
> Did anyone see the little blub on the Insider last night about Sophia Braga (sp?) from Modern Family fighting the "deadly" disease. It said, Sophia stated they cut my neck and now I am in remission.. Wow what a great bunch of info that was. Well Micayla, as you said before, any press is good. etc. They did say there will be an article in this weeks Parade magazine, so heads up. I will read it if its in my paper.
> 
> Oh and Micayla you are one of the lucky ones getting the thyrogen because I saw again on the thy ca website someone else was told no thyrogen for her, just cytomel because of the shortage etc. They couldnt get it for some lady etc.




LMP- 
Thanks for the info on the thyrogen. 

Facebook has it's pros and cons- I resisted for a long time too. It's nice for keeping in touch with extended family though. Is it possible the ladies just don't think to tell you and you don't know because you aren't on facebook?


----------



## mrsklamc

They deleted my post! Oh well- looks like they don't leave any comments but their own on their page.


----------



## luvmarypoppins

So for those who have had their synthroid reduced, I am thinking of you Micayla, and anyone else.

Did you notice things like:
Having More Energy
Less Forgetfulness
Feeling more hot than the usual feeling more cold?
Less Bone pain?

I know its strange, but its only been a couple days. The only thing that is still bad is the sleeping, but I think that is just due to my normal neck dissection pain/scar tissue stuff.

Could this stuff happen so fast? Or am I imagining things??


----------



## mrsklamc

I just talked it over with DH. I think it's pretty different for everyone but I think the big difference when I went from hyper to less hyper is less crankiness & better sleep. I personally was not cold- have always had less tolerance for heat since this whole thing started-- other than my feet which are almost always cold. 

I almost think I'm a little hypo now. We're going to do a TSH whenever we start my testing. I was hoping she'd get back to me with dates this week since they called about the thyrogen but no such luck.\

ETA: I have never had bone pain. My calcium levels have always been good but I try to eat extra dairy because there's a correlation between synthroid use and osteoporosis.


----------



## mrsklamc

On another note, I think I'm going to start a co q 10 supplement. It's pretty expensive but supposedly good for gums, which I've had some trouble with since the 2nd radiation dose. Thought I'd throw that out there and see if anyone else has tried it, or wants to.


----------



## Christine

luvmarypoppins said:


> So for those who have had their synthroid reduced, I am thinking of you Micayla, and anyone else.
> 
> Did you notice things like:
> Having More Energy
> Less Forgetfulness
> Feeling more hot than the usual feeling more cold?
> Less Bone pain?
> 
> I know its strange, but its only been a couple days. The only thing that is still bad is the sleeping, but I think that is just due to my normal neck dissection pain/scar tissue stuff.
> 
> Could this stuff happen so fast? Or am I imagining things??



No, it can happen quickly.  Although I would think you should feel less hot.  I don't have bone pain so that I can't comment on. 

I would mainly feel less irritable.  I would imagine your energy would increase because you're not so ramped up; however, I've never had much energy all my life so I wouldn't know!


----------



## dischick4778

I've only been on the lower dosage for around a week.  Haven't noticed anything different yet.  I keep waiting to feel less anxious and less stressed but it hasn't happened yet.  I'm still getting leg and foot cramps but I have a major calcium issue as you know.  I never noticed feeling overly tired, but I chase after an 18 month old so I figure being tired is part of life.  Hoping to see some positive changes soon.  Glad to hear you are noticing some differences!


----------



## luvmarypoppins

dischick4778 said:


> I've only been on the lower dosage for around a week.  Haven't noticed anything different yet.  I keep waiting to feel less anxious and less stressed but it hasn't happened yet.  I'm still getting leg and foot cramps but I have a major calcium issue as you know.  I never noticed feeling overly tired, but I chase after an 18 month old so I figure being tired is part of life.  Hoping to see some positive changes soon.  Glad to hear you are noticing some differences!



What was your reduced to? Mine was 200 and now they are trying 175. Also did your endo tell you what tsh she wants you at? Asking as Christine also says she cant believe that mine said a 2 or 3 is ok. Maybe mine means a 0.2 or 0.3? I am not throwing out the rest of my 200 yet, just in case.


----------



## luvmarypoppins

mrsklamc said:


> On another note, I think I'm going to start a co q 10 supplement. It's pretty expensive but supposedly good for gums, which I've had some trouble with since the 2nd radiation dose. Thought I'd throw that out there and see if anyone else has tried it, or wants to.



My dentist said I should rinse with ACT alot which I do. This past visit he did have to do alot of cleaning and I didnt have any cavities so that is good for me. I do the restoring one. I alternate from the green and blue bottles for the flavor. I like the green one better though.


----------



## mrsklamc

I know I'm probably paranoid but I NEVER throw out synthroid. When my dose changes I stash it in case there should ever be some kind of natural disaster or disruption to the supply chain.


----------



## dischick4778

luvmarypoppins said:


> What was your reduced to? Mine was 200 and now they are trying 175. Also did your endo tell you what tsh she wants you at? Asking as Christine also says she cant believe that mine said a 2 or 3 is ok. Maybe mine means a 0.2 or 0.3? I am not throwing out the rest of my 200 yet, just in case.



I'm down to 200 from 224 levo.  My tsh is 0.05 but my thyroglobulin antibodies are still 672 (down from 3,000 originally).  My calcium is still only 8 but she said we will watch it.  

mrsklamc - where do you live again?  I can't imagine feeling as though I would not get my medications.  Living in NYC I guess I don't even think about it.  Is there a shortage in the US?


----------



## mrsklamc

dischick4778 said:


> mrsklamc - where do you live again?  I can't imagine feeling as though I would not get my medications.  Living in NYC I guess I don't even think about it.  Is there a shortage in the US?



Nope, not at all. I'm paranoid. I just think about it when stuff like the tsunami in Japan happens. It may also be-- did you ever have to do a total withdrawal scan, or just thyrogen? I didn't have thyrogen my first 2 times and you become very very aware of how dependent you are on that pill.


----------



## Celidh

Hi, I just found this thread.  I was diagnosed with hypothyroid 5 or 6 years ago.  Have been on Synthroid and spent the last year playing with the dosage because my levels were low.  At the moment, I take two different dosages 125 one day and 150 the next.  125 was too low and 150 was too high for me.  My gp also told me my magnesium was low when I had full blood work done last month.  I don't know if they are related.

I don't always feel great and have major mood swings that vary from being angry and anxious to be sad and weepy, but that is most likely related to mild depression.  I don't know thought how much if anything my thyroid has to do with that.

I have skipped through this thread and it amazes me how much many of you know about your levels and the numbers.  I never have any idea what my levels actually, just that the doctor tells me they are either high, low or fine.  I also never ask because my gp always seems to be in such a hurry that I don't feel like asking.  I know that is no way to be but.. 

I do know that I quite often have trouble swallowing things, it's like they get stuck in my throat, even if they are chewed well.  Apples are really bad for it.  I always make sure I have a drink with me when I am eating.  I did mention this to my gp and she sent me for a test where I had to swallow a liquid while they checked out my throat and that came back fine.

The thing that bothers me most about my doctor is that she never asks me how I am when I go in her office.  Not how are you, how do you feel, how are things going, nothing other than basically what do you  need today.  I just don't feel that she is approachable because she is so busy.  Getting another doctor is out of the question, there just aren't any to be had for those with no doctor and if you already have one, you would never get in to  a doctor even if they were taking patients.

Anyway, I feel lucky that I haven't had to go through as much as some of you have.


----------



## luvmarypoppins

mrsklamc said:


> Nope, not at all. I'm paranoid. I just think about it when stuff like the tsunami in Japan happens. It may also be-- did you ever have to do a total withdrawal scan, or just thyrogen? I didn't have thyrogen my first 2 times and you become very very aware of how dependent you are on that pill.



O.K. I didnt count them but its probably around 15 so I guess I will take your advice and save them for a rainy day


----------



## luvmarypoppins

Well I am happy to report that I went out with dh today in the car and he was so amazed that I was not screaming my head off and hyper ventilating at his driving habits

And ds20 was driving me so crazy. I told him, why dont you go out and play with your friends. Normally I would have been flying off the handle etc. But nope, not anymore.

Can I just say my family is  my new synthroid dose.

Now if only the blood tests will be ok. 

Good bye for now high synthroid dose, I knew you well!!


----------



## luvmarypoppins

Celidh - welcome!!  I am sure it is frustrating when you dont feel you are getting the kind of care you need from your doctor. I guess the general practiconer is your only option instead of an endocronogist.

I would ask all the questions you want, its your health and your body. You should also ask for copies of your lab reports if they are not willing to go over them with you. That way you can always have a reference for each visit.

I felt like you did when I had the higher dose, but now I am feeling much better. I didnt have the depresssion though.

I too had such a hard time swallowing things such as you do. I cant eat bread or french fries that much. Always have to have the liquids nearby too. But mine was a result of all the thy ca surgery etc. 

I didnt have that particular swallowing test, but my ent surgeon has scoped me alot with the laryngoscope (sp?) and saw lots of what was going on from the throat down to the esophagus. 

Will your dr. consider any other kind of tests to check on your swallowing issues?

Hang in there. I am sure things get difficult at times. You will always be your best advocate.


----------



## son3disfan

luvmarypoppins said:


> Celidh - welcome!!  I am sure it is frustrating when you dont feel you are getting the kind of care you need from your doctor. I guess the general practiconer is your only option instead of an endocronogist.
> 
> I would ask all the questions you want, its your health and your body. You should also ask for copies of your lab reports if they are not willing to go over them with you. That way you can always have a reference for each visit.
> 
> I felt like you did when I had the higher dose, but now I am feeling much better. I didnt have the depresssion though.
> 
> I too had such a hard time swallowing things such as you do. I cant eat bread or french fries that much. Always have to have the liquids nearby too. But mine was a result of all the thy ca surgery etc.
> 
> I didnt have that particular swallowing test, but my ent surgeon has scoped me alot with the laryngoscope (sp?) and saw lots of what was going on from the throat down to the esophagus.
> 
> Will your dr. consider any other kind of tests to check on your swallowing issues?
> 
> Hang in there. I am sure things get difficult at times. You will always be your best advocate.



I am working my way through this thread.
What wonderful useful information from all your stories.

I am a Hodgkins lymphoma survivour  ( 18 years now)
And have been  treated With synthyroid for with hypothyroidism for the last 8 years.
I take 1.25, ( started at. .75 ) and have been worried about the lack of info from my doctor about my levels......
This thread has made me make an apt. And follow up this week.
There seems to be lot more side effects that I wasn't aware of That I have been experiencing lately (mood swings, bone pain). I didn't make the connection to my thyroid  but just thought it was aging. 

Anyone else have chronic sinus issues?
I am recovering right now from my third very aggressive sinus surgery in the last 5 years.
I have mast tubes in my nose to carry the antibiotics and steroids right into the sinus.
I have so many different doctors, I think they forget about the thyroid when they are medicating and operating, and I wonder if there is any connection...
Sinuses and thyroid....
Fighting infections and immunity...

Anyway, thank you for all the info on here.


----------



## mrsklamc

Welcome!

CelidH, don't underestimate your thyroid hormone level's ability to depress you! 

Mine tends to go - low= depressed; high = crabby. I'm wondering if a dose of 137 would work for you? It would just be so much less complicated than trying to remember which pill to take.


----------



## mrsklamc

son3disfan said:


> I
> Anyone else have chronic sinus issues?



I do but they predate my thyroid cancer. Actually it could be that x-rays and scans from childhood caused the thyroid cancer. Anyway, Patanase is a wonder drug for me for that but of course my insurance coverage on it is terrible.


----------



## Christine

mrsklamc said:


> Welcome!
> 
> CelidH, don't underestimate your thyroid hormone level's ability to depress you!
> 
> Mine tends to go - low= depressed; high = crabby. I'm wondering if a dose of 137 would work for you? It would just be so much less complicated than trying to remember which pill to take.



I also take a dose of .137.  That dosage was developed later in the history of thyroid meds (for instance, they didn't offer it in 1995).  It could be that Canada chooses not to offer it as part of their pharmaceutical line.  I find that hard to believe, but since Canada has universal healthcare, they standardize a lot of things to save money.  I remember hearing a long time ago that they didn't offer the .137 dosage but I would think that would have changed by now.


----------



## mrsklamc

Christine said:


> I also take a dose of .137.  That dosage was developed later in the history of thyroid meds (for instance, they didn't offer it in 1995).  It could be that Canada chooses not to offer it as part of their pharmaceutical line.  I find that hard to believe, but since Canada has universal healthcare, they standardize a lot of things to save money.  I remember hearing a long time ago that they didn't offer the .137 dosage but I would think that would have changed by now.



Ah, good catch Christine, I missed that pp was in Canada. I wonder if it also may be that they don't offer the brand name drug.


----------



## Celidh

Christine said:


> I also take a dose of .137.  That dosage was developed later in the history of thyroid meds (for instance, they didn't offer it in 1995).  It could be that Canada chooses not to offer it as part of their pharmaceutical line.  I find that hard to believe, but since Canada has universal healthcare, they standardize a lot of things to save money.  I remember hearing a long time ago that they didn't offer the .137 dosage but I would think that would have changed by now.



I just assumed that there was no  middle dose between 125 and 150 for Synthroid.  I may not feel like my doctor  has time for me but I must say she is pretty good to look things up and get second opinions if she is not sure.  I've sat in her office and watched her look up certain drugs in her book.  I don't believe this makes her less knowledgeable, she is a doctor not a pharmacist.  I feel that is is a good thing.

Someone asked about an endo, no I am in a small town and to get a referral I would have to travel and it would take forever.  Funny though, my partner's sister is an endo but she lives in another province and I would never bother her as we aren't close (I have only ever met her twice) and she doesn't like bringing her work home with her.  I wish I could ask her though.

A pp mentioned sinus, I have a really annoying post nasal drip that tends to run down the back of my throat and into my chest and make me feel like I always have the "ahems".  I don't complain though because the first suggestion my dr had was a nasal spray and she said if that didn't work, she would refer me to an ENT.  I hate nasal sprays and didn't use it very well, so I never brought it up again.  My bad!

I think a good portion of my problem is depression.  Part of it may be linked to thyroid but part of it has been ongoing for years.  It's one thing to know you need help but it's a totally different thing to get up the guts to ask for it.  I don't want to just have a drug prescribed and I don't have the time or the money to pay for counselling so...  I just spend my time either on the verge of tears (or crying) or absolutely losing my temper and being angry at my family.  I don't really find much of anything funny, amusing or even fun at all.  My kids and my partner have commented many times that I never smile.  It is a chore to just to the bare minimum with my family.  I feel bad for them.  It's not fair to them to have to see me mad at them or crying.  My partner has commented often that she is amazed that I cry so easily.  

OK, I"m totally off topic now.  thanks for listening.


----------



## dischick4778

mrsklamc said:


> Nope, not at all. I'm paranoid. I just think about it when stuff like the tsunami in Japan happens. It may also be-- did you ever have to do a total withdrawal scan, or just thyrogen? I didn't have thyrogen my first 2 times and you become very very aware of how dependent you are on that pill.



I have not done the total withdrawal.  Other than right after surgery last year when they first found the cancer.  They would not let me take the synthroid until I had my rai, it was about 3 weeks between surgery and rai.  That was a bad time and I did not feel good but I think I attributed it to just having had major surgery.  

I tend to be a pretty positive and calm person, that is until now.  Lol.  The high dose makes me crazy agitated, I have such a short fuse.  But I wouldn't say I'm paranoid.  Guess it's better safe than sorry though.  You should do whatever gives you piece of mind.


----------



## mrsklamc

Ack! 3 Weeks? My first, horrible endo made me wait 6- even though my surgeon wrote a formal letter stating that that was unnecessary.

As bad as cancer is to begin with, it makes me ill how much extra misery I was put through due to incompetence.


----------



## 1Grumpy9

After spending a great two days with a good friend and her mom (they were visiting from TN), I finally get to report on how my lab results were from my endo.

My free T4 was at 2.41, and the normal is 1.0, so my new medicine is definitely working, but a little too much...hence the reason why I am so jitery and can't sleep through the night.  So we decided to back down my medicine and check again in three weeks to see where the new dosage takes me.  Hopefully I will be able to sleep a whole night now!!!

I am super excited that my meds are finally working and I feel so much better....and I actually lost 10lbs with this new medicine!!!  WOOOHHHOOO!!!!


----------



## Christine

1Grumpy9 said:


> After spending a great two days with a good friend and her mom (they were visiting from TN), I finally get to report on how my lab results were from my endo.
> 
> My free T4 was at 2.41, and the normal is 1.0, so my new medicine is definitely working, but a little too much...hence the reason why I am so jitery and can't sleep through the night.  So we decided to back down my medicine and check again in three weeks to see where the new dosage takes me.  Hopefully I will be able to sleep a whole night now!!!
> 
> I am super excited that my meds are finally working and I feel so much better....and I actually lost 10lbs with this new medicine!!!  WOOOHHHOOO!!!!



Good for you!


----------



## mrsklamc

So the last I talked to the thyrogen place they were trying to confirm delivery for yesterday. I emailed the medical assistant and it did NOT come in; she said she'd call them if it doesn't come by Friday. She said I could go ahead and start the diet if I want and she'll schedule me as soon as it comes in; I'm going to start tomorrow.


----------



## luvmarypoppins

1Grumpy9 said:


> I am glad the med is working for you.


----------



## luvmarypoppins

Micayla - I would be a little anxious too until the thyrogen is actually here.

Good you have the summer to do the diet. You have so many options. So many fresh fruits and veggies available now. 

Well I dont know how my new med adjustment is working out, now it seems I feel more tired than usual. I am trying to keep an eye on my symptoms so I can tell the endo if need be. At this point, I dont even know what normal is or what it is suppose to feel like. Its frustrating.


----------



## mrsklamc

luvmarypoppins said:


> Micayla - I would be a little anxious too until the thyrogen is actually here.
> 
> Good you have the summer to do the diet. You have so many options. So many fresh fruits and veggies available now.
> 
> Well I dont know how my new med adjustment is working out, now it seems I feel more tired than usual. I am trying to keep an eye on my symptoms so I can tell the endo if need be. At this point, I dont even know what normal is or what it is suppose to feel like. Its frustrating.



Thyrogen is backordered til the 16th so not starting the diet yet after all.


----------



## luvmarypoppins

mrsklamc said:


> Thyrogen is backordered til the 16th so not starting the diet yet after all.



Well that just stinks! Remember what I told you I read on the thy ca website?? I am glad my rad. onc. is the 5th or 6th largest us user of thyrogen. I guess when you have over 100 thyroid cancer pts. a year from my ent surgeon, its a no brainer etc. 

In the future, can you go to a large teaching hospital that might have a better supply like in the city versus the suburbs etc?

I am sure you are so frustrated. I bet you want to get this over and done with. 

Wishing you all the best. Hang in there!!


----------



## dischick4778

mrsklamc said:


> Thyrogen is backordered til the 16th so not starting the diet yet after all.



That is so frustrating.  So sorry!  It is not easy to live with this as it is, does it have to be complicated by back ordered medication?!  I feel your pain.


----------



## luvmarypoppins

Well color me stupid. Remember I said how I was feeling so tired etc. Come to find out ds19 did my pills in his little gift to me, the 7 day pill case. Gosh, sorry I hate that thing but love ds. Well one of my pills changed shape but not color, the color is the same as another.

In the morning I take the synthroid and blood pressure pill at the same time, my endo says its fine to do that. Well I was taking another pill instead with the synthroid, so maybe it was not working well. 

Honestly, I am sleeping way too much in the morning and I even took a little nap before dinner. This is not normal me. So we will see what happens now that I have the meds straight.

I am feeling still so overly tired. I dont feel like waiting till the middle of sept. to do something about this etc. as that is when the blood test is. 

Christine, would I have to wait 6 weeks for the blood test? or if the tiredness is really bad should I call the endo before etc?


----------



## Christine

luvmarypoppins said:


> Christine, would I have to wait 6 weeks for the blood test? or if the tiredness is really bad should I call the endo before etc?



If it's not too personal, what other pill were you taking with the Synthroid.  

TSH changes lag behind what is really going on.  I think if you were to go in too soon, you wouldn't get the real story.  I would give it at least 4 weeks.

How long has it been since you made a medication change?


----------



## luvmarypoppins

Christine said:


> If it's not too personal, what other pill were you taking with the Synthroid.
> 
> TSH changes lag behind what is really going on.  I think if you were to go in too soon, you wouldn't get the real story.  I would give it at least 4 weeks.
> 
> How long has it been since you made a medication change?



The other pill was folic acid. Its not even from the endo but my regular gp. He only gave me that when I had the severe anemia. I honestly dont take it that much anymore.  

When the endo gave me a copy of my lab reports I later looked and saw the red blood cell count is  too high, over limit it says. That is another mystery to figure out. Why is the red cell count too high when I am not even taking the folic acid. The gp wanted me to take it to boost the counts when I was so anemic.

I started taking the new synthroid dose around July 19, so it really has not been that long.


----------



## Christine

luvmarypoppins said:


> The other pill was folic acid. Its not even from the endo but my regular gp. He only gave me that when I had the severe anemia. I honestly dont take it that much anymore.
> 
> When the endo gave me a copy of my lab reports I later looked and saw the red blood cell count is  too high, over limit it says. That is another mystery to figure out. Why is the red cell count too high when I am not even taking the folic acid. The gp wanted me to take it to boost the counts when I was so anemic.
> 
> I started taking the new synthroid dose around July 19, so it really has not been that long.



Well there are no interactions between folic acid and Synthroid.

As for you being tired, I *really really* doubt it is the dosage change at this point.  It has been 10 days and, you know, your body can be very sensitive to changes.  That may be what is cause the change in feelings; however, I doubt that your TSH is at a point that you would be fatigued.  I would bet it is just due to "change in dose" which is a change in hormone.   I would try to make it the 6 weeks so you can know for sure how you do on the new dose but if it gets increasingly worse, I would call the doctor (try to go another 2 weeks).


----------



## luvmarypoppins

Hope everyone is doing well.

In the mail today I get a letter cancelling my January endo visit due to "unforseen circumstances". Umm, remember what I went through before with the other visit. They said to call and reschedule something. I will call on Monday as I know trying to get a visit with this endo is worse then trying to win the lottery (I dont gamble anyway)

I went out with dh today and OMG, I had a huge shooting bone pain. It was horrid. I guess I better call about the infusion too. I think I will take some tylenol tonight just to cover my bases. 

Also I know the medication reduction is working somewhat at least on the hyper stuff as wonderful ds19 decided to rearrange my kitchen cabinets, just the food, without my permission. Ordinarily I am sure I would have gone crazy, but I didnt. I handled it very well. Hmm, I guess men dont know not to mess around with the kitchen stuff


----------



## mrsklamc

So if you have Mon/Tues thyrogen, then weds. Blood work and tracer dose, when do you have your pre- tracer dose blood tests? The ones for kidney function and pg?


----------



## Christine

mrsklamc said:


> So if you have Mon/Tues thyrogen, then weds. Blood work and tracer dose, when do you have your pre- tracer dose blood tests? The ones for kidney function and pg?




I believe I had mine on Monday.


----------



## mrsklamc

luvmarypoppins said:


> Hope everyone is doing well.
> 
> In the mail today I get a letter cancelling my January endo visit due to "unforseen circumstances". Umm, remember what I went through before with the other visit. They said to call and reschedule something. I will call on Monday as I know trying to get a visit with this endo is worse then trying to win the lottery (I dont gamble anyway)



I can't believe they just sent you a letter like that! Wow!


----------



## luvmarypoppins

Micayla - I cant answer your ? because I actually forgot what I did last year. Hmm, I do remember my scan showed 0.5 which wasnt the best but she said she saw worse. I always get to have the pregnancy test after the thyrogen as I just sign a waiver for the rad. onc.  I honestly thought we got the results for the one blood test while we were eating breakfast in Kona last year. It was my b day and our anniv. to boot!! She said after the scan I would have to wait a week? Does that seem right?

Well I just called the endo and got a visit close to the other date. If my dh is in china one of the ds can take me as 2 of them will be on college break so that will be good. They are calling me back again to schedule the reclast infusion and I still need the mamo and eye specialist. My head spins. That is why I usually like to keep it down to one dr./test etc. a month.


----------



## dischick4778

So I get my synthroid from my mail order pharmacy and today I got 3 months worth of the wrong dose!  My endo is out on maternity leave and the covering physician gave the pharmacy my old dose.  The worst part is when I called the endo's office to clarify the receptionist was treating me like I was nuts.  She said "well the doctor's notes clearly stated you are to take 224 I don't know why you think otherwise".  Hello!  I have a new prescription for 200 and have been taking it for a month!  It took them all day to figure out that she did change the dose.  Thank God I had the scan before she went out on leave, the person covering and the office staff are clearly confused.  

Then I call the pharmacy to tell them and they say with approval it is fine and they will send me the new dose.  I ask what to do with the wrong meds and they say to throw them out!  Can you believe it?  That seems like quite a waste of much needed and perfectly good medication that I did not even open.  It feels like a sign, and I will definitely hold onto it just in case.  

Thanks for listening to my craziness.


----------



## luvmarypoppins

Jenn-  wow, cant believe  that happened to you and that you have to deal with this. Hmm, looks like everyone is getting their own synthroid stockpile. I only have 15 pills but its better than nothing. 

Does anyone else do mail order too? Dh ins. does not require it, but the co. is always sending us literature and trying to shove it down our throats and sometimes calls. I just say no thanks and hang up. It really wouldnt save me all that much money. They dont cover one med, I dont know if they would cover the synthroid either. If they did that would be $100 a year and I dont know as its a name brand and they usually do generics and my other one they usually dont pay for either or very little. So its more of a hassle for me at this point unless my meds change etc. 

Do you notice a difference in how you feel from 224 to 200. With the 200 I was having the faster heartbeat sometimes, sweating which she said was menopause. Never believed that either and now I am not sweating at night or I should say having more like a hot flash and not physically sweating and best part is I am not freaking out emotionally so much.

Here is a ? for everyone. Its from a comment I saw on the thyca. website. On your pathology report does it say either well differentiated or poorly differentiated. They say it is suppose to say one of those 2. So I dug mine out and mine does not say either of those. Did your surgeon, endo, rad. onc. tell you what it was if one of those. Mine only says pap with rare columnar cell etc. distinctively rare, looked at by more than one pathologist and other comments on the other tumor they found on the L side of the neck that no one could figure out what it was. 

I am still feeling tired and just fell asleep around 5:30, I am so not liking this.


----------



## Christine

luvmarypoppins said:


> Does anyone else do mail order too? Dh ins. does not require it, but the co. is always sending us literature and trying to shove it down our throats and sometimes calls. I just say no thanks and hang up. It really wouldnt save me all that much money. They dont cover one med, I dont know if they would cover the synthroid either. If they did that would be $100 a year and I dont know as its a name brand and they usually do generics and my other one they usually dont pay for either or very little. So its more of a hassle for me at this point unless my meds change etc.
> 
> 
> 
> 
> I do mail order--mainly for convenience.  I use Levoxyl which has a "generic" price structure so if I mailorder, I get 90 days for $20.  If I went to the pharmacy, the same amount would cost me $30.  I get one month "free" when I mail order.  For Synthroid it would be $50 for the 90 day supply and $75 if I got it at the pharmacy.
> 
> I do take care to avoid ordering meds over the summer.  I will usually order in late May and then in September to avoid the 100 degree days.  If for some reason I manage to screw that up, I have my endo write me a prescription for a 30 day supply that I can fill in July if need be.
> 
> 
> 
> 
> Here is a ? for everyone. Its from a comment I saw on the thyca. website. On your pathology report does it say either well differentiated or poorly differentiated. They say it is suppose to say one of those 2. So I dug mine out and mine does not say either of those. Did your surgeon, endo, rad. onc. tell you what it was if one of those. Mine only says pap with rare columnar cell etc. distinctively rare, looked at by more than one pathologist and other comments on the other tumor they found on the L side of the neck that no one could figure out what it was.
> 
> Click to expand...
> 
> 
> Yes, even 16 years ago, my report stated "well differentiated".  I remember my MIL having a big talk with me about that (she worked at NIH in the endocrine pathology center--handy, huh?) and she explained to me the differences in well differentiated versus plain old differentiated versus poorly differentiated and that it was important to know what you had.
Click to expand...


----------



## 1Grumpy9

luvmarypoppins said:


> Does anyone else do mail order too? Dh ins. does not require it, but the co. is always sending us literature and trying to shove it down our throats and sometimes calls. I just say no thanks and hang up. It really wouldnt save me all that much money. They dont cover one med, I dont know if they would cover the synthroid either. If they did that would be $100 a year and I dont know as its a name brand and they usually do generics and my other one they usually dont pay for either or very little. So its more of a hassle for me at this point unless my meds change etc.



My perscription plan prefers us to use mail order, but I will NOT use them.  The mail order people sent my father the wrong dosage of synthroid (he looked at it before he took any) and this was just a refill and not a new script.  They screwed up two of his medicines on two different occasions.  We both have similar plans (he is a retiree).  I may pay a little more for my scripts by going to the local Rite Aid, but I haven't had to wait and extra week to get the proper meds.  Also, my plan dropped Synthroid as a perferred medicine and I was paying almost $200 for a 90 day supply of meds.  Luckily they haven't figured out that this new med I am on shouldn't be covered...LOL!!!  So I am only paying $33.00 for a 30 day supply (2 pills a day).  Not only is this a savings for me it is also a better med for me.


----------



## mrsklamc

I haven't done mail order only because we were kind of trying to get my dose stabilized before we ordered 90 days worth.

I believe- but I don't remember for sure- that my pathology said well differentiated. I can check if you want- I have copies of EVERYTHING- including my original CT scan film.


----------



## dischick4778

luvmarypoppins said:


> Jenn-  wow, cant believe  that happened to you and that you have to deal with this. Hmm, looks like everyone is getting their own synthroid stockpile. I only have 15 pills but its better than nothing.
> 
> Does anyone else do mail order too? Dh ins. does not require it, but the co. is always sending us literature and trying to shove it down our throats and sometimes calls. I just say no thanks and hang up. It really wouldnt save me all that much money. They dont cover one med, I dont know if they would cover the synthroid either. If they did that would be $100 a year and I dont know as its a name brand and they usually do generics and my other one they usually dont pay for either or very little. So its more of a hassle for me at this point unless my meds change etc.
> 
> Do you notice a difference in how you feel from 224 to 200. With the 200 I was having the faster heartbeat sometimes, sweating which she said was menopause. Never believed that either and now I am not sweating at night or I should say having more like a hot flash and not physically sweating and best part is I am not freaking out emotionally so much.
> 
> Here is a ? for everyone. Its from a comment I saw on the thyca. website. On your pathology report does it say either well differentiated or poorly differentiated. They say it is suppose to say one of those 2. So I dug mine out and mine does not say either of those. Did your surgeon, endo, rad. onc. tell you what it was if one of those. Mine only says pap with rare columnar cell etc. distinctively rare, looked at by more than one pathologist and other comments on the other tumor they found on the L side of the neck that no one could figure out what it was.
> 
> I am still feeling tired and just fell asleep around 5:30, I am so not liking this.



I was resistant to do the mail order for a long time.  However, they make it so hard not to.  If I get a prescription more than twice from my local pharmacy the cost goes from $5 to $10 per month because the insurance knows its a monthly thing and they want you to use the mail order.  Through the mail order I pay $10 for 3 months worth.  So it's a lot of money when you think about the fact that I have 3 monthly prescriptions.  Instead of $30 per month I am now paying $30 for 3 months worth of meds.  So far no problems other than the wrong dose which was really the doctor's fault.

I don't feel much of a difference in the dose yet.  I am still short fused and anxious.  I keep waiting for some miracle calm to come over me.  Lol.


----------



## luvmarypoppins

Hi everyone!

Micayla - are you doing the diet now??? Sorry, I forgot. Well if you are, did you try that pesto/avocado pasta dish you posted. It looked really good.

My dh just complimented me on my wonderful behavior in the car. He said that medicine is really working. Yes it is!! I dont freak out too much anymore when people are driving. So he is happy and so am I. Good because we are leaving on a nice little vacation, just he two of us, to the amish country in penn. on tuesday and we are coming back sun. I am going to visit my aunt and uncle in NJ back and forth on the way. 

They have still not called me back from the endo about the reclast infusion. Oh well. 

Hope everyone is doing well.


----------



## luvmarypoppins

And if you are all bored you can read my synthroid story of the day, or why I dont like cvs, but I already did a thread on that the other week.

I send dh in after church to pick up the med. I tell him 1. I dont kow what it was. So he comes out with 2 meds for me and 1 for ds. I look at mine and see its for...synthroid 200!!!

Why oh why. I send dh back in. He talks to the tech. Its the tech who cancelled my other dose when I got the 175. She tells him she doesnt know why it was refilled on the rapid refill. They take it back and credit our credit card. Cant these people look at the scripts right??? Sigh, sigh. Yes, you must all be your own advocates.

Oh and an older lady from my church is going to my ent surgeon tomm. She is having some major cancer surgery on her face. I told her to tell the dr. I said hi and that she goes to my church etc. I feel so bad for her. It sounds like she has a long road ahead. She is all by herself too. She already had alot of external beam radiation but not with my rad. onc.


----------



## mrsklamc

No, I'm starting the diet Weds. That way hopefully the thyrogen comes in the 16th and can start doses on the 22nd and take the tracer the 24th.


----------



## dischick4778

mrsklamc said:


> No, I'm starting the diet Weds. That way hopefully the thyrogen comes in the 16th and can start doses on the 22nd and take the tracer the 24th.



Good luck and stay strong.  If you are looking for something sweet the chocolate cake in the LID recipe book was a decent substitute.  And the avocado pasta was good too.


----------



## mrsklamc

Ok I just talked to the specialy pharmacy and the thyrogen is supposed to be delivered tomorrow via fedex.

Making oatmeal with raspberries and cinnamon for breakfast, a salad for lunch, and a plain hamburger with unsalted ketchup for dinner. Carrot sticks for snacks.


----------



## jcano

Just joining.  Three females in the house...all on different doses of Levothyroxine.  My DH is thrilled! 

I've been hypo for...well, let's just saw more years than I want to acknowledge.  My dd's both have Hashi's along with some other auto-immune issues.


----------



## mrsklamc

jcano said:


> Just joining.  Three females in the house...all on different doses of Levothyroxine.  My DH is thrilled!
> 
> I've been hypo for...well, let's just saw more years than I want to acknowledge.  My dd's both have Hashi's along with some other auto-immune issues.



Welcome!


----------



## mrsklamc

This diet is such a bizarre thing. Do you know what I want this afternoon? A fruit roll up. I can't tell you the last time I have even THOUGHT about a fruit roll up!

Has anyone made any of the brownie recipes in the thyca cookbook?


----------



## dischick4778

mrsklamc - Isn't it amazing how all of sudden you want things you normally don't even think about at the time when you can't have them!  It's very annoying.  I did not try the brownies, but did try the chocolate cake and it wasn't bad.  

Question for the group - I have been on the new lower dose for about a month now and at first I saw no change.  However, the past three days I have been totally exhausted.  I wake up tired, I'm tired all day, and I literally fall asleep by 8pm.  This happened over night and I am wondering if you think it has to do with the dose change.  I went from 224 to 200.  I am just trying to see if this is normal.  Has anyone else experienced this with a dose change?  Thanks!


----------



## mrsklamc

dischick4778 said:


> mrsklamc - Isn't it amazing how all of sudden you want things you normally don't even think about at the time when you can't have them!  It's very annoying.  I did not try the brownies, but did try the chocolate cake and it wasn't bad.
> 
> Question for the group - I have been on the new lower dose for about a month now and at first I saw no change.  However, the past three days I have been totally exhausted.  I wake up tired, I'm tired all day, and I literally fall asleep by 8pm.  This happened over night and I am wondering if you think it has to do with the dose change.  I went from 224 to 200.  I am just trying to see if this is normal.  Has anyone else experienced this with a dose change?  Thanks!



Totally sounds like it could be a dosage change thing.

This may be unique to me, kinda weird, but the other thing that knocks me out like that with no real other obvious symptoms is,  well....treatable with monistat.


----------



## dischick4778

At this moment I don't have any symptoms other than being really tired.  I guess I will wait and see.  It's probably just an adjustment to the meds.  It's always something right?


----------



## Christine

mrsklamc said:


> Totally sounds like it could be a dosage change thing.
> 
> This may be unique to me, kinda weird, but the other thing that knocks me out like that with no real other obvious symptoms is,  well....treatable with monistat.



You know, I have the *same* problem when that happens.  It makes me feel really tired and run down.  Thought it was just me.


----------



## luvmarypoppins

Welcome J. Cano - your house sounds like a bunch of fun with everyone on synthroid. I think my dh would head for the hills! One of me on synthroid is enough for him for sure. I have to put up with 4 males in my home, so lots of testosterone, 

Jenn - My dose went down from the 200 to 175 and at first I got really tired too, but now i think it seems to be leveling off. I notice alot of the hyper emotional stuff is so good now. Even dh said I was pretty good today after sitting in traffic on the Belt Parkway for over an hour with the rain and flood issues etc.

Micayla - Wishing you all the best on the diet. I didnt try the cakes because my my rad. onc. refuses to let us have stuff like cocoa powder etc. I did see they have some new recipes using the homemade applesauce to make banana bread or something else that did sound yummy.      Well on my trip to the amish country I found out the Indiana Amish people work in the rv vehicle industry/ They seem so different from the Amish in Penn.That was so sad what happened at your state fair. 

I had a good trip It was good to get away from not thinking about medical stuff for a while. I couldnt walk so much with all my joint,spine, issues etc. I really need that reclast infusion.  Oh, my ds just told me the endo secretary called and I guess I will call her back to schedule the infusion. I cant do it now as dh is leaving for China on Friday for a week and then I think the lst week of sept. or around then he is going to Seattle and San Francisco for a week. I dont want the ds to have to take care of me when I get the flu like symptoms. They are not very caring, helpful etc.


----------



## mrsklamc

luvmarypoppins said:


> Micayla - Wishing you all the best on the diet. I didnt try the cakes because my my rad. onc. refuses to let us have stuff like cocoa powder etc. I did see they have some new recipes using the homemade applesauce to make banana bread or something else that did sound yummy.
> 
> That was so sad what happened at your state fair.
> 
> I cant do it now as dh is leaving for China on Friday for a week and then I think the lst week of sept. or around then he is going to Seattle and San Francisco for a week. I dont want the ds to have to take care of me when I get the flu like symptoms. They are not very caring, helpful etc.



The diet is much easier so far since I am not hypo as well. I was so _emotional_ about my cravings last time. I did see a ghiardelli chocolate bar at the store that was 100% unsweetened cocoa today....

The stage collapse was very tragic. We drove by on the way downtown this afternoon and there were still a ton of police and emergency vehicles there, investigating still I'm sure.

I'm sorry your sons aren't more helpful.I'm sure I wouldn't have been at that age either; I wish I lived closer!


----------



## luvmarypoppins

I just listened to the endo secretary message.

She says, I am calling to schedule the infusion.  Oh goody, but wait, she says..do you have the medicine???

Last time they said they were getting it for me. I dont know if they changed their rules again. I will have to call her back and see what s going on. The endo wrote me a script but it has expired now.

Oh well back to my normal reclast runaround. Who would have thought this would turn into something so drawn out and complicated.


----------



## lovemygoofy

Hi everyone, I'm Tina. I'm sure some of you know me.

Well after years of a battle I was seen by a Reproductive Endo. The first question he asked was if I was being treated for my thyroid condition. I looked at him like he was crazy as I've never been told anything like that.

He said the labs were plain as the nose on his face that I have a thyroid condition but would do more labs just to see. So fastforward a couple weeks(I had alot of labs done) and he said I have a hypothyroid but it swings both ways. He did testing over a series of weeks to follow my cycle. I started the synthroid on Friday. 

I'm reading this thread and just about in tears. For the past 6 months I have had so much hand and finger muscle pain. I couldn't open a water bottle and sometimes I'd drop my pen while writing. I have been so scared that I was also getting MS as I know a couple people with the symptoms. The doctor assured me that this was all part of a thyroid problem that should have been taken care of at least a year ago if not longer. 

Thank you all for sharing your stories and symptoms and what works for you. I guess this will be a long road for me but at least I'm not in the dark going down it.


----------



## luvmarypoppins

Hi Tina and welcome!! Of course we know who you are sweetie

I know you have been through so much but it sounds like you are on the right track with this doctor. 

Christine is the resident expert here and she also lives in Va like you, hmm maybe you two are by each other???

Might be helpful to keep a little notebook for any questions, blood work etc.

Can you share what your synthroid dose is?

Feel free to ask anything you want here. Everyone will try to help you. 

Personally I take the name brand as I dont want to deal with all the filler issues of the generics and my ins. co. wont pay for it though, but its a small price to pay for my health. My dose is 175 but that is because I have thyroid cancer.

Dont feel bad about the lack of a diagnosis for a long time. I too went through that. My reg. gp was totally clueless. He did a sonogram about once a year but I never had thyroid blood tests.

Hang in there Wishing you all the best always.


----------



## Christine

Well Tina, I'm sorry to have to welcome you to our little group but at the same time is it weird for me to say that I'm happy you have a thyroid condition????

I'm hoping this will really turn things around for you?

When the doctor says that you "swing both ways" does that *really* mean that you have Hashimoto's thyroiditis (which is the only process I know of that can cause a person to be hyper at times as well as hypo at times)?  I'm by no means an expert on Hashi's but I am wondering if he gave you that diagnosis.

I remember when I was very hypo I had terrible carpal tunnel syndrome and cramps in my calves.  The good thing for me is that I knew I was hypo so I didn't have to wonder what was wrong with me.  My vision got a little wonky too!

Please let us know how you are doing.  It's great that even with the thyroid stuff going on, you were still have to lose all the weight you did.  You might see a little more happen now.


----------



## cristielf

I'm new to this thread, but just wanted to say HELLO! I was diagnosed a few years ago with Papillary Thyroid Carcinoma (Thyroid Cancer).. I haven't looked through all these pages, but anyone else have it? I have the ear to ear scar that everyone says they don't notice, but I do.. i had a full thyroidectomy and a separate lymphectomy due to a return of the cancer.  I'm due to get Thyogen injections next month prior to my annual LID scan.  Anyone get this?  what's it's like? Honestly, I'm more scared to get a shot in the butt than anything else


----------



## Christine

cristielf said:


> I'm new to this thread, but just wanted to say HELLO! I was diagnosed a few years ago with Papillary Thyroid Carcinoma (Thyroid Cancer).. I haven't looked through all these pages, but anyone else have it? I have the ear to ear scar that everyone says they don't notice, but I do.. i had a full thyroidectomy and a separate lymphectomy due to a return of the cancer.  I'm due to get Thyogen injections next month prior to my annual LID scan.  Anyone get this?  what's it's like? Honestly, I'm more scared to get a shot in the butt than anything else



I was dx'd with papillary back in 1995.  I don't have an ear-to-ear scar, but I have a fairly noticeable one due to having two surgeries and NOT having a plastic surgeon at the surgery.

I had Thyrogen injections three times.  They make me fairly nauseous and tired but nothing awful.  On my third time with them, I had an adverse reaction so I won't be using them again, but most people do just fine with them.

I will say that the needle they use for Thyrogen is VERY small/fine and virtually painless.  I was scared too but it was easy.


----------



## mrsklamc

cristielf said:


> I'm new to this thread, but just wanted to say HELLO! I was diagnosed a few years ago with Papillary Thyroid Carcinoma (Thyroid Cancer).. I haven't looked through all these pages, but anyone else have it? I have the ear to ear scar that everyone says they don't notice, but I do.. i had a full thyroidectomy and a separate lymphectomy due to a return of the cancer.  I'm due to get Thyogen injections next month prior to my annual LID scan.  Anyone get this?  what's it's like? Honestly, I'm more scared to get a shot in the butt than anything else



Hi! I had both Papillary and Follicular. After what you've already been through, the injections will be a breeze! I'm doing my 2nd go round with them on Monday and Tuesday of next week. The first time they just made me pretty tired and gave me a headache, so I just plan on going home and going to sleep!

Welcome! There are great ladies on this thread (and the occasional guy) and it has been a huge help to me on my cancer journey.


----------



## luvmarypoppins

cristielf said:


> I'm new to this thread, but just wanted to say HELLO! I was diagnosed a few years ago with Papillary Thyroid Carcinoma (Thyroid Cancer).. I haven't looked through all these pages, but anyone else have it? I have the ear to ear scar that everyone says they don't notice, but I do.. i had a full thyroidectomy and a separate lymphectomy due to a return of the cancer.  I'm due to get Thyogen injections next month prior to my annual LID scan.  Anyone get this?  what's it's like? Honestly, I'm more scared to get a shot in the butt than anything else



Welcome! I have Papillary thy ca too, stage 4, but mine also is the rare and aggressive columnar cell variant. I have a huge scar looking like a smile and a big drain hole since that had to stay in for about 3 weeks post op due to all my complications. My tumor was 12.5 cent. and was crushing my trachea. I also had a secondary tumor that I think was about 4 cm on the L side of my neck and they werent quite sure what it was but they said it was acting like lymphoma at one time? The path said not thyroid cancer though, just a lymph node tumor? I am rare and strange as always. Doctors love me.

I also have a jagged scar on the L side of my neck where I had the dissection and 47 lymph nodes out. I actually had 3 surgeries in 14 hours. 2nd one for post op bleeding and the 3rd one was another surgeon figured out my jugular vein had burst. I had to be placed in a coma for 2 days and needed 7 pints of blood. Its a miracle from God that I am still alive today. Also my dh insisted on pushing my bed down to the or., good as the 2nd surgeon told him I only had 15 minutes to live.

I just had my 3rd round of thyrogen in May. No diet this time or scan, just the blood test. I only get the shots in my arms. This time I had a sore arm for days on the L side. The other side was fine, but maybe as it was done by another nurse? First time I had headaches and nausea. Last year just headache and slight nausea. This time was very bearable, just slight headache.

My initial dose of rai was 200 and they just lowered my synthroid dose to 175, so next month we will see how that is going with the blood testing.

Can you share if your recurrence was on the same side if you had an initial lymph node removal? I am curious as my endo said since they have removed most of the L side, she thinks it will come back in my R side.

I also had a little scare the other month, but it turned out to only be a level 2 infected lymph node on my L side nearer to my ear verses where the dissection was.

Wishing you all the best.


----------



## lovemygoofy

luvmarypoppins said:


> Hi Tina and welcome!! Of course we know who you are sweetie
> 
> I know you have been through so much but it sounds like you are on the right track with this doctor.
> 
> Christine is the resident expert here and she also lives in Va like you, hmm maybe you two are by each other???
> 
> Might be helpful to keep a little notebook for any questions, blood work etc.
> 
> Can you share what your synthroid dose is?
> 
> Feel free to ask anything you want here. Everyone will try to help you.
> 
> Personally I take the name brand as I dont want to deal with all the filler issues of the generics and my ins. co. wont pay for it though, but its a small price to pay for my health. My dose is 175 but that is because I have thyroid cancer.
> 
> Dont feel bad about the lack of a diagnosis for a long time. I too went through that. My reg. gp was totally clueless. He did a sonogram about once a year but I never had thyroid blood tests.
> 
> Hang in there Wishing you all the best always.



Thank you for the warm welcome. I can't say I'm real happy right now as I'm a big emotional mess to be honest.  I'm taking a low dose of synthroid right now at 25mcg. I don't even know enough to even ask questions. I'm reading up when I have time but I have two different medical diagnosis to juggle.

In addition I have also been diagnosed with a sever case of PCOS and starting metformin and it's miserable. The doctor wants me to escalate the dosage to 2000mg by months end if I can tolerate it but right now I cringe at the thought.

At least I'm getting some help and the doctor really is a nice guy. Blunt and not real personable but certainly seems competent and I appreciate that. I do hope you are feeling better .





Christine said:


> Well Tina, I'm sorry to have to welcome you to our little group but at the same time is it weird for me to say that I'm happy you have a thyroid condition????
> 
> I'm hoping this will really turn things around for you?
> 
> When the doctor says that you "swing both ways" does that *really* mean that you have Hashimoto's thyroiditis (which is the only process I know of that can cause a person to be hyper at times as well as hypo at times)?  I'm by no means an expert on Hashi's but I am wondering if he gave you that diagnosis.
> 
> I remember when I was very hypo I had terrible carpal tunnel syndrome and cramps in my calves.  The good thing for me is that I knew I was hypo so I didn't have to wonder what was wrong with me.  My vision got a little wonky too!
> 
> Please let us know how you are doing.  It's great that even with the thyroid stuff going on, you were still have to lose all the weight you did.  You might see a little more happen now.



Hi Christine! Thanks for the welcome to this great club. I haven't been diagnosed with Hashi yet. He wants to continue to monitor me for a bit longer. The doctor said that my levels are rising and then dropping but not necessarily into bad levels but because my levels rise and then might drop the next day it's putting me into a spin. Sometimes litterally I feel!

All these symptons that I thought were just crazy apparently really make sense with this diagnosis. I do try to keep hope that it will help with the fertility issues and weight as well. The doctor was amazed that I've managed to keep any weight off but now have just hit a wall not gaining but not loosing no matter what I do.

The doctor does seem to think with the thyroid medicine and the PCOS medicine that he anticipates more weight loss. He didn't mention numbers but he did say double digits so we'll wait and see.Thank you again and hopefully I will learn enough to even ask more questions.


----------



## mrsklamc

Tina- 

I have PCOS too. Diagnosed at the same time as my cancer. 

The metformin- are you taking the 'ER' version? People seem to tolerate it better. Also, are you taking it with food? The only other thing I can suggest is to avoid really sugary foods while on it- pop, etc will really make your insides act up.


----------



## WDWDancer

Morning Everybody,

Well yesterday was an interesting day.  I went to see a new endocrinologist who was recommended to me by my neurologist as I still have been feeling horrid but my current endo doesn't want to change my meds since the numbers are good.  The reviews I had read on-liine of this new endo were horriable but surprise surprise my husband and I really liked her.  She explained things very direct, but actually listened to me and my story.

I have an official diagnosis of hashimotos now and am scheduled for a total thyroidectomy in September (go on August 30th for my pre-op).  I am 25 and nervous for the thyroidectomy but I have a mass on the right lobe that has been growing and new nodules on the left lobe.  It is a relief to finally have a name and plan but now I am worrying about what taking the thyroid out will do.

Thanks everyone I hope you're all feeling better


----------



## 1Grumpy9

wdwdancer...I had a total thyroidectomy 5 years ago this week, and the only thing I had to deal with is my levels really screwed up afterwards.  Ohh and they had to take my parathyroid which also took my blood calcium down too.  Now I struggle with getting the amount of calcium needed to be "normal".  A little advice, if you are a side sleeper, you probably won't be able to sleep that way for a couple of days after your surgery.  Also, a soft diet is what I found worked the best since hard or solid foods didn't go down my throat that easily (the hospital tried to give me french toast the morning after surgery...let's say that didn't work out so well...LOL).  I ate pudding, applesauce, jello, mashed potatoes a lot for about 2 weeks until my throat was healed enough to handle more solid foods.

An update from me...I just had another set of labs done this morning, and I should find out either tomorrow or Monday about my levels after moving to a lower dose of this new medicine.  When I find out I will let y'all know!!!


----------



## dischick4778

Hi All, just checking in.  Finally feeling better with my new, lower dose.  And I am actually feeling a bit more in control when stressful situations arise.  I think before I act, which was not an option when I was on that high dose.  

Saw my surgeon the other day and he was happy with my clean scan.  He said he can do a scrape thing to make my scar look better, but right now I'm content.  And the best part is he said I can move to seeing him every 6 months instead of every 3 months.


----------



## mrsklamc

WDWdancer, 

The one thing I would really encourage you to check into is how many thyroidectomies the surgeon has done and how often there are complications with paras, etc.

The surgery itself is not too bad.


----------



## 1Grumpy9

I just got a call from my endo's office and my results are still that my levels are still high, so she wants to lower my meds again.  This is a good thing because I was getting at the top end of the meds.  Now I am going to a 200mcg a day!!  This is the first time since my surgery that I have been that low in mcg.  I am really loving this new medicine because it is actually working for me.


----------



## Christine

1Grumpy9 said:


> I just got a call from my endo's office and my results are still that my levels are still high, so she wants to lower my meds again.  This is a good thing because I was getting at the top end of the meds.  Now I am going to a 200mcg a day!!  This is the first time since my surgery that I have been that low in mcg.  I am really loving this new medicine because it is actually working for me.



You're on the Tirosint, correct?

So are you saying that when you took Synthroid (or whatever brand you were taking) that it wasn't working at all for you?  I guess I'm a little confused because you are now lowering your dosage.  That *sounds* like the other meds were working before but, oh well, as I said, I'm confused!


----------



## luvmarypoppins

WDWDancer said:


> Morning Everybody,
> 
> Well yesterday was an interesting day.  I went to see a new endocrinologist who was recommended to me by my neurologist as I still have been feeling horrid but my current endo doesn't want to change my meds since the numbers are good.  The reviews I had read on-liine of this new endo were horriable but surprise surprise my husband and I really liked her.  She explained things very direct, but actually listened to me and my story.
> 
> I have an official diagnosis of hashimotos now and am scheduled for a total thyroidectomy in September (go on August 30th for my pre-op).  I am 25 and nervous for the thyroidectomy but I have a mass on the right lobe that has been growing and new nodules on the left lobe.  It is a relief to finally have a name and plan but now I am worrying about what taking the thyroid out will do.
> 
> Thanks everyone I hope you're all feeling better



Glad you liked your new endo. I think that is very important to have a good relationship with them, that they will listen to you and you will feel comfortable with them etc.

I am sure you are anxious abut the surgery. I too will agree with the eating and swallowing issues post op. I tried to eat lettuce/salad. Thought I was going to choke to death, right in the hospital! Lesson learned, stick with the very soft stuff, like mac and cheese, applesauce, maybe pasta, meatloaf, mashed potatoes etc and then keep working your way up. I also still have problems with certain breads and french fries. 

Also if you have any hoarseness etc. some lifesavers, jolly ranchers, any other type of hard candy might help.

I felt much better keeping my head very elevated at first and only wanted to wear shirts that were no where near my neck etc. (more lower cut).

Wishing you all the best.


----------



## luvmarypoppins

1Grumpy9- Hope the new meds work out for you.

Jenn - I am glad you are feeling better with the med adjustment. I felt so much better too, like I was not so much of a crazy person anymore. Everyone in the family is happy.  Just wondering why you have to keep going back to the surgeon? Is it only for the scar issue, or the voice stuff etc? My surgeon said, after a year he basically didnt want to see me anymore but then he passed me off to the other surgeon but that was only for all the voice issues I was having. I am glad your surgeon offered you something about the scar. Would he do it himself, or send you to a plastic surgeon etc?

Micayla - how is the diet going? I think this is the best time of year to do it. I would dread it in winter.

Well in my thy ca website reading I saw:

1 guy who went through what I went through. He said his neck was like a balloon and he was bleeding internally. He called it a "close call". 

Another guy said his "MAJOR" hospital only had 6 doses of thyrogen available and he was getting 2?? Wowsa, this shortage seems really bad. I am so blessed that I got it and Jenn too and Micayla you are lucky too. Thankful for my rad. onc. and living in the NY metro area for sure.

And here is my topic of discussion:  SCANS

What has your endo, oncologist etc. told you about scans. I see on the website that some people have to have them yearly. I know my rad. onc. said after 2 clean scans she only wants the endo to do the blood testing, but she did also mention about getting a scan every 5 years?  Christine, what is your insight? and has anyone else had anything mentioned to them?


----------



## Christine

luvmarypoppins said:


> And here is my topic of discussion:  SCANS
> 
> What has your endo, oncologist etc. told you about scans. I see on the website that some people have to have them yearly. I know my rad. onc. said after 2 clean scans she only wants the endo to do the blood testing, but she did also mention about getting a scan every 5 years?  Christine, what is your insight? and has anyone else had anything mentioned to them?



It used to be that once you got two clean scans, you could skip a year.  If that was clean, you went to a 5 year interval for the rest of your life.  That changed, at least for me, in 2008 when my endo told me that the move was just to do Thyrogen with Tg testing.  No more scanning for people like me.

My knew endo is on board with that.  As far as I can tell, I will never have another scan again, just monitor with Tg and ultrasounds.  In fact, since I won't take Thyrogen again, I will probably remove myself from my meds for a week or two before having my Tg done (if I can handle it).


----------



## 1Grumpy9

Christine said:


> You're on the Tirosint, correct?
> 
> So are you saying that when you took Synthroid (or whatever brand you were taking) that it wasn't working at all for you?  I guess I'm a little confused because you are now lowering your dosage.  That *sounds* like the other meds were working before but, oh well, as I said, I'm confused!



I am on Tirosint...I had absorbsion problems with Synthroid.  After my surgery and my Parathyroid also being removed, I have to take a bunch of calcium and even though stretched out my times of taking Synthroid, it was not being absorbed into my body and being blocked by the amount of calcium I take.  I was on Synthroid from when I was 7.  The Synthroid was working, but not very well at all!!!  My endo started me on the same amount of mcg's as my Synthroid, and after 8 weeks it took my numbers really high and we have been backing it down ever since.

You can be confused...I understand completly!!!


----------



## Christine

1Grumpy9 said:


> I am on Tirosint...I had absorbsion problems with Synthroid.  After my surgery and my Parathyroid also being removed, I have to take a bunch of calcium and even though stretched out my times of taking Synthroid, it was not being absorbed into my body and being blocked by the amount of calcium I take.  I was on Synthroid from when I was 7.  The Synthroid was working, but not very well at all!!!  My endo started me on the same amount of mcg's as my Synthroid, and after 8 weeks it took my numbers really high and we have been backing it down ever since.
> 
> You can be confused...I understand completly!!!



Okay, got it!!  Thanks!


----------



## dbaker375

Hi there, I'm a newbie to this thread.

I am 42 yr old female with hypothyroidism.  I take 100mcg of levothyroxine daily.  I was diagnosed approx 7 years ago have been on varying dosages of synthroid or the generic ever since.

I feel like I know my body pretty well and honestly feel that I need to bump up on my meds, but the endo says that my bloodwork looks "perfect" (as of July).  UGH!!

I feel like I do when the meds need to be adjusted.  I was encouraged to read a previous posters comments about Carpal Tunnel symptoms and weird vision as I have been experiencing them.

I don't know whether to switch doctors or what I should do.


----------



## Christine

dbaker375 said:


> Hi there, I'm a newbie to this thread.
> 
> I am 42 yr old female with hypothyroidism.  I take 100mcg of levothyroxine daily.  I was diagnosed approx 7 years ago have been on varying dosages of synthroid or the generic ever since.
> 
> I feel like I know my body pretty well and honestly feel that I need to bump up on my meds, but the endo says that my bloodwork looks "perfect" (as of July).  UGH!!
> 
> I feel like I do when the meds need to be adjusted.  I was encouraged to read a previous posters comments about Carpal Tunnel symptoms and weird vision as I have been experiencing them.
> 
> I don't know whether to switch doctors or what I should do.



I would probably ask to get a copy of all your labs over the last 2 years.  Then compare them?  Has there been a change in your TSH?  Also, you want to ensure that your doctor is running a full thyroid panel and not just the TSH.  The other numbers (T4 and T3) tell a lot.  

If you review all that and all is well, you need to look into seeing if something else is causing your change.  Or it could be something has change and you might do better on a higher dose of the thyroid meds but it's hard to say not knowing what range you are at right now.


----------



## dischick4778

luvmarypoppins said:


> Jenn - I am glad you are feeling better with the med adjustment. I felt so much better too, like I was not so much of a crazy person anymore. Everyone in the family is happy.  Just wondering why you have to keep going back to the surgeon? Is it only for the scar issue, or the voice stuff etc? My surgeon said, after a year he basically didnt want to see me anymore but then he passed me off to the other surgeon but that was only for all the voice issues I was having. I am glad your surgeon offered you something about the scar. Would he do it himself, or send you to a plastic surgeon etc?
> 
> And here is my topic of discussion:  SCANS
> 
> What has your endo, oncologist etc. told you about scans. I see on the website that some people have to have them yearly. I know my rad. onc. said after 2 clean scans she only wants the endo to do the blood testing, but she did also mention about getting a scan every 5 years?  Christine, what is your insight? and has anyone else had anything mentioned to them?



Thanks!  It has been wonderful feeling less crazy!  I think my surgeon is being weird about the whole thing.  From the beginning he has been very interested in my case and very involved.  I was seeing him every two months at first then every 3 months.  I don't know if he was shocked by the amount of cancer and tumors that I had and he was just being cautious but I have been seeing him just as often as my endo.  At least now I can cut back on seeing him.  

Also, my surgeon is a plastic surgeon as well so he would fix my scar in his office.  He said it would be quick and painless.  I'm just so done with procedures and medical issues that I cannot even consider it at the moment.

From my understanding I will do scans the first three years but I think that is because of how aggressive the cancer was.  Plus I still have a high thyroglobulin ab level so they are not comfortable using that as a true marker just yet.  I was told after three years of clean scans we would skip and year and scan at year five.  Then if that was clean we would move to every three years.  And take it from there.


----------



## mrsklamc

Well it's been about 10 days and the diet is just starting to get frustrating. At least I've lost some weight this time- about 5 lbs. Started wondering when I might be done and looked back through this thread- looks like last time my tg took about 14 days- and that's AFTER they got the right test ordered.


----------



## luvmarypoppins

Micayla -  Hang in there! You can do this!! I am sure its getting old and ugly real fast. Right near the end of mine, I think I went into some kind of emotional revolt and decided, no more salad, I just had peanut butter with carrot sticks and celery and then some plain matzo for the crunch effect or some cucumbers.

I also try to mix up textures and colors.

I also had to make myself "feel" special and like I was getting a special treat, so I bought myself a bottle of soda etc. That way I could go out and take it during a car ride etc. (I was not even allowed regular tap water). Also got those little raisin boxed and craisins packets. Sometimes I made a little trail mix baggie for myself with nuts, raisins, craisins, etc. 


Maybe try a hot meal for lunch and salad for dinner etc. 

I would rotate the meats, beef, pork and chicken with the starches, sweet potatoe, basmati rice, no yolk egg noodles and white potatoes.

You could also use oil on ears of corn and bake them in the oven and add some pepper etc. Stuffed peppers with sliced tomatoes etc.

I think I also did something with green and yellow squash. 

Pop some popcorn in the microwave. Make a fresh fruit slushie etc.

Wisihng you all the best. If you make the banana bread or some dessert with the aoplesauce form the lid cookbook, let me know how it turns out. 

There is light at the end of the tunnel and you are getting there!!


----------



## dischick4778

mrsklamc said:


> Well it's been about 10 days and the diet is just starting to get frustrating. At least I've lost some weight this time- about 5 lbs. Started wondering when I might be done and looked back through this thread- looks like last time my tg took about 14 days- and that's AFTER they got the right test ordered.



It's such a frustrating feeling and a terribly boring diet.  But you are 10 days in, that is good news!  At the end I was feeling most deprived at night because I like a treat and after eating fruit all day I didn't want more of it, but I found ices that did not have dairy or soy and that helped.  What about the egg white with avocado, that was my alternative to salad for lunch.  

Just know we understand and feel free to vent about it anytime.


----------



## mrsklamc

First thyrogen shot (of this round anyway) today and no real adverse reaction so far.  Just can't stop thinking about cheese and bacon.


----------



## luvmarypoppins

mrsklamc said:


> First thyrogen shot (of this round anyway) today and no real adverse reaction so far.  Just can't stop thinking about cheese and bacon.



I am glad that things are so far so good for you. It didnt hit me to later in the evening. The slight headache and little queasy feeling. My worst thing on the lst day in June was the injection site, wowsa, lots of pain. I think I took tylenol. I cant remember.

Just be thankful you got the thyrogen. On the thyca website, there are lots of people complaining that they are getting no thyrogen and have to go through hypo hell.

As I said before this has all been caused by the European demand and the switching to the midwest plant my rad. onc. said. 

Wishing you all the best.


----------



## mrsklamc

Ok so this time I got 123 instead of 131 & I guess that's safer and no precautions this time? Scan is tomorrow instead of Friday which is what I was originally told....

Also of note, in January I think I remember having to sign a sheet saying that I didn't see anything floating in the thyrogen, and I didn't have to do that this time.


----------



## luvmarypoppins

What is the difference between the 2? I am assuming I got the 131 because I was told of all the precautions last time.

I also did not have to sign any papers in June for the thyrogen.

Wishing you all the best tomm. I bet you will be so happy when all this is behind you. Keep us informed.


----------



## Crzygrl

Hi everyone! I was just diagnosed with hypothyroidism, and just found this thread. My pcp diagnosed me with a tsh level of 8, and started me on 50 mcg levothyroxine. On the second dose I got hives on my lips almost immediately after taking it. The dr thinks I'm nuts, but told me to wait a couple of days and then try Synthroid just in case I was allergic to an inactive ingredient in the Levothyroxine. I have so many questions about this diagnosis (what caused it, will I be hypo forever, etc) that  I feel the dr kind of skirted around. I'm wondering if I should make an appointment with and endocrinologist? Any recommendations or info would be greatly appreciated!


----------



## mrsklamc

Crzygrl said:


> Hi everyone! I was just diagnosed with hypothyroidism, and just found this thread. My pcp diagnosed me with a tsh level of 8, and started me on 50 mcg levothyroxine. On the second dose I got hives on my lips almost immediately after taking it. The dr thinks I'm nuts, but told me to wait a couple of days and then try Synthroid just in case I was allergic to an inactive ingredient in the Levothyroxine. I have so many questions about this diagnosis (what caused it, will I be hypo forever, etc) that  I feel the dr kind of skirted around. I'm wondering if I should make an appointment with and endocrinologist? Any recommendations or info would be greatly appreciated!



I would definitely try to get in to see an endo. There's usually a wait so if your regular doc gets it fixed you can cancel.


----------



## mrsklamc

luvmarypoppins said:


> What is the difference between the 2? I am assuming I got the 131 because I was told of all the precautions last time.



I guess 123 isn't as powerful....I remember Christine talking about the possibility of a tracer dose making treatment doses less effective...I guess they're just catching up around here. 123 for a scan, 131 for a treatment.


----------



## luvmarypoppins

Crzygrl said:


> Hi everyone! I was just diagnosed with hypothyroidism, and just found this thread. My pcp diagnosed me with a tsh level of 8, and started me on 50 mcg levothyroxine. On the second dose I got hives on my lips almost immediately after taking it. The dr thinks I'm nuts, but told me to wait a couple of days and then try Synthroid just in case I was allergic to an inactive ingredient in the Levothyroxine. I have so many questions about this diagnosis (what caused it, will I be hypo forever, etc) that  I feel the dr kind of skirted around. I'm wondering if I should make an appointment with and endocrinologist? Any recommendations or info would be greatly appreciated!



Welcome, second the going to see an endo. There is no way I would let my gp manage my thyroid stuff. He is totally clueless. Couldnt even figure out I had thyroid cancer.

I also had to wait a while to see the endo post op. But I go to a teaching hospital and I was blessed to be able to pick from 3 endos. Of course I wanted the female, so I had to wait, but my surgeons nurse prac. called and got me in much, much sooner. It would  help if your regular drs. office could call and refer your case I think.  I always take the name brand synthroid, even though my ins. does not pay for it, they only do generic, but I dont want to be concerned with all the filler issues etc.


----------



## dbaker375

Christine said:


> I would probably ask to get a copy of all your labs over the last 2 years.  Then compare them?  Has there been a change in your TSH?  Also, you want to ensure that your doctor is running a full thyroid panel and not just the TSH.  The other numbers (T4 and T3) tell a lot.
> 
> If you review all that and all is well, you need to look into seeing if something else is causing your change.  Or it could be something has change and you might do better on a higher dose of the thyroid meds but it's hard to say not knowing what range you are at right now.




Hi there,
I took your advice and requested copies of the last 2 years lab results and made an appointment to see a new doctor.  Surprisingly I was able to get right in.  Only the TSH has been tested the last two times.

The new physician took time to chat with me and tested the T3 and T4 and increased my Synthroid from 100mcg to 112mcg.  Also told me not to take the generic.

He also ordered an ultrasound of the thyroid using a DX of multinodular goiter, hypothyroidism.  He didn't mention anything about "feeling" nodules or anything but said that since I had never had a scan of the thyroid before he wanted to see one.  Surprisingly I was able to get an appointment for that right away tomorrow morning.

I return to the doctor in 4 weeks.

Thanks for the support!!


----------



## mrsklamc

So I went to the scan this morning and the tech said "So this will be your first clear scan and they like you to have 3 so we'll see you two more times..." and I am taking it that that means it was clear in her opinion at least. 

Looking back at this thread (It makes for a great record!) It looks like my results for thyroglobulin have taken anywhere from 3 days to a couple of weeks. When they draw the blood tomorrow I'm going to ask when they think it will be back cause I am ready for some cheese and bacon!


----------



## luvmarypoppins

mrsklamc said:


> So I went to the scan this morning and the tech said "So this will be your first clear scan and they like you to have 3 so we'll see you two more times..." and I am taking it that that means it was clear in her opinion at least.
> 
> Looking back at this thread (It makes for a great record!) It looks like my results for thyroglobulin have taken anywhere from 3 days to a couple of weeks. When they draw the blood tomorrow I'm going to ask when they think it will be back cause I am ready for some cheese and bacon!



I am sure the waiting must be killing you. It just seems like they do stuff so much more differently by you. I also cant believe the tech would say something like that to you.

I guess because I get the scan done right at the univ. hosp, I just then go right down to rad. onc. and the rad. onc. gives me my results. Oh and my 2010 scan number was 1.00. She didnt give me the number this time as usual. 
Last year I also had the blood draw and I think it was less than a week for the results but I did not stay on the diet. My rad. onc. lets you go off but says if its not a good test, then back on the diet and rai etc. 

I did look up my 2010 scan and it was 1-131. I think that is all they use here.

My rad. onc. says 2 clean scans and then one at 5 years unless the blood tests are not good.

Christine -do you know if anyone refuses to get a follow up scan if their blood tests are always normal etc. I know I am not looking forward to it again, but know it must be done. I read on thy ca. some people state their drs. say the blood test is just fine and want to cut down anymore radiation exposure etc.

Micayla - my thoughts and prayers are with you. Wishing you all the best. Hang in there!! You are doing a great job!!


----------



## luvmarypoppins

dbaker375 said:


> Hi there,
> I took your advice and requested copies of the last 2 years lab results and made an appointment to see a new doctor.  Surprisingly I was able to get right in.  Only the TSH has been tested the last two times.
> 
> The new physician took time to chat with me and tested the T3 and T4 and increased my Synthroid from 100mcg to 112mcg.  Also told me not to take the generic.
> 
> He also ordered an ultrasound of the thyroid using a DX of multinodular goiter, hypothyroidism.  He didn't mention anything about "feeling" nodules or anything but said that since I had never had a scan of the thyroid before he wanted to see one.  Surprisingly I was able to get an appointment for that right away tomorrow morning.
> 
> I return to the doctor in 4 weeks.
> 
> Thanks for the support!!



Sounds like this new dr. is on top of things with your case. Best wishes with the ultrasound tomm. Keep us informed. I also take the name brand synthroid and not the generic.


----------



## mrsklamc

luvmarypoppins said:


> I am sure the waiting must be killing you. It just seems like they do stuff so much more differently by you. I also cant believe the tech would say something like that to you.



The tech last time did worse- he said "I can tell you right now that it's clear and you can go off the diet and back on your meds."Except then the blood wasn't clear and I had to diet & go hypo all over again. 

I'm really coping so much better on the diet this time....but I would LOVE some cheese.  Currently though I'm really enjoying celery w/ unsalted PB & topped w/ craisins.


----------



## mrsklamc

Bloodwork this AM. I am a little nervous because I like to specify to the person doing the data entry that it is thyroglobulin LEVEL and not antibodies that I need to know. I'm not even sure why they test for antibodies. Anyway, I specified to the girl that drew the blood that I needed it and she asked someone else and she said that the level would be included. (Lab slip said thyroglobulin w a/b.)

She also didn't know when it would be back, or whether if it would be ready for their courier to pick up at 10:30 (the draw was about 10:00.) 

The diet really isn't even bothering me that much (don't get me wrong I am certainly ready to splurge) but I am just ready to be DONE with this!


----------



## luvmarypoppins

mrsklamc said:


> Bloodwork this AM. I am a little nervous because I like to specify to the person doing the data entry that it is thyroglobulin LEVEL and not antibodies that I need to know. I'm not even sure why they test for antibodies. Anyway, I specified to the girl that drew the blood that I needed it and she asked someone else and she said that the level would be included. (Lab slip said thyroglobulin w a/b.)
> 
> She also didn't know when it would be back, or whether if it would be ready for their courier to pick up at 10:30 (the draw was about 10:00.)
> 
> The diet really isn't even bothering me that much (don't get me wrong I am certainly ready to splurge) but I am just ready to be DONE with this!




I dont blame you, I think I said the same thing to the Quest lab tech. I said, something like my cancer life is counting on this etc. I made sure it was all right. They make you look at it all and sign it here. My draw was on a Friday and they called on a Wed. I think. Maybe tues. I am not sure.My endo dept. has a dedicated account with them, so I dont know if that means you get the results faster? Honestly dont know.

Oh and a side note on me - I called today and made an appt. with the opthamalogist whom my endo told me to go to. Gosh, at the univ. here there is a list of like 13 doctors in the dept. One of this ones specialties is thyroid eye disease, so I am going to be happy knowing she has a lot of experience in this. I still have to wait till sept. 13th. They originally gave me a date of Oct. 3rd or 5th. My eye is constantly tearing etc. Its so bothersome and annoying. I think she will be able to determine if the RAI affected it an any way.


----------



## ElizK

Hoping ya'll can help me. I have often found you to be a wealth of information! 

I was diagnosed as hypothyroid about 3-4 years ago.  An ultrasound showed two tiny nodules, too, which I have re-scanned every year. 

Yesterday, my thyroid started aching, if that makes sense.  It hurts more on the right side, which is where the nodules are. My husband said that my thyroid looked uneven, the right side being a little larger than the left.  I couldn't really see it, but I didn't tell him that one side hurt more than the other. 

What the heck could be causing this??? It's really annoying! I'm not sure when my next scan is... or when my next blood test is, either, for that matter. I've got a $3000.00 deductible, so if I can avoid a trip to the doctor that would great!

Thank you for your help!


----------



## mrsklamc

Unfortunately there are many things it could be, but no way to tell without seeing a doctor.


----------



## luvmarypoppins

ElizK said:


> Hoping ya'll can help me. I have often found you to be a wealth of information!
> 
> I was diagnosed as hypothyroid about 3-4 years ago.  An ultrasound showed two tiny nodules, too, which I have re-scanned every year.
> 
> Yesterday, my thyroid started aching, if that makes sense.  It hurts more on the right side, which is where the nodules are. My husband said that my thyroid looked uneven, the right side being a little larger than the left.  I couldn't really see it, but I didn't tell him that one side hurt more than the other.
> 
> What the heck could be causing this??? It's really annoying! I'm not sure when my next scan is... or when my next blood test is, either, for that matter. I've got a $3000.00 deductible, so if I can avoid a trip to the doctor that would great!
> 
> Thank you for your help!



I would see a dr. too. I am sure there are also financial considerations but your health is really important. Maybe your dr. can do the tests that are the best indicators of what could be happening while taking the financial situation into consideration as well. I wouldnt wait though. Wishing you all the best.


----------



## luvmarypoppins

Micayla - Hopng you get some good news soon.

And if there is anyone here that was affected by Hurricaine Irene, hope you are safe.

Well we have survived the hurricaine. My dh got the last flight from chicago to conneticut as all the ny airports were closed. He had to rent a car then and drive back. This was after flying 14 hours from beijing to chicago. 

We lost power for over 24 hours. I think if I was doing the diet then it would have been a nightmare, not being able to cook etc. 

Oh and they cancelled my endo visit again for the 3rd time. I will call in a week or so as many people still do not have electricity around here at home and are not in the best of moods etc. This will be the 3rd time they are making me get another appt. This is frustrating. 

Worse, I am feeling so, so tired. I feel like taking a nap right now. I know I cant have the new blood test until sept. 17th or a little later. I am assuming it will show if I am too hypo and need the meds upped again etc.


----------



## mrsklamc

So Dr. just called and said that scan showed a small amount of uptake in the left neck but they can't tell if it is cancer or a saliva gland. The blood test was less than 0.5 so she says chances are slim to none that it's cancer but she wants to do an ultrasound just to be sure. Ultrasound is not scheduled yet.


----------



## Christine

mrsklamc said:


> So Dr. just called and said that scan showed a small amount of uptake in the left neck but they can't tell if it is cancer or a saliva gland. The blood test was less than 0.5 so she says chances are slim to none that it's cancer but she wants to do an ultrasound just to be sure. Ultrasound is not scheduled yet.



Well, that's not PERFECT news, but pretty good.  Sorry you can't get a quick ending to things.  That's how the first several scans were for me.  One day, it's going to be easy.  I promise.


----------



## mrsklamc

Christine said:


> Well, that's not PERFECT news, but pretty good.  Sorry you can't get a quick ending to things.  That's how the first several scans were for me.  One day, it's going to be easy.  I promise.



 I know she just wants to be REALLY sure. And honestly it just makes this SO much more tolerable when you aren't hypo. It's too bad the thyrogen doesn't agree with you.


----------



## ElizK

mrsklamc said:


> Unfortunately there are many things it could be, but no way to tell without seeing a doctor.





luvmarypoppins said:


> I would see a dr. too. I am sure there are also financial considerations but your health is really important. Maybe your dr. can do the tests that are the best indicators of what could be happening while taking the financial situation into consideration as well. I wouldnt wait though. Wishing you all the best.



Thanks to both of you.   Seems to have gone away after about 3 days, so I'm going to continue to ignore it!  I'd make a great ostrich.


----------



## mrsklamc

ElizK said:


> Thanks to both of you.   Seems to have gone away after about 3 days, so I'm going to continue to ignore it!  I'd make a great ostrich.



I do hope you will reconsider. If it is something bad, time is of the essence. It may make the difference between, say, cancer that is confined to your thyroid or has entered your lymphatic system and begun spreading through your body.

I am not trying to scare you but the danger is very real. I know $3000 is a lot but your life is priceless!


----------



## luvmarypoppins

mrsklamc said:


> So Dr. just called and said that scan showed a small amount of uptake in the left neck but they can't tell if it is cancer or a saliva gland. The blood test was less than 0.5 so she says chances are slim to none that it's cancer but she wants to do an ultrasound just to be sure. Ultrasound is not scheduled yet.



Sorry you couldnt just be over and done with this. Kind of like its always dragging on for  you. But you are so tough and have lots of strength with all you have been through.   I like that the blood test was good. 

My rad. onc. says she goes more by the blood test than by the scan anyway.

Its good your dr. is thorough and leaves no stone unturned.

Did they tell you your actual scan number. My one was 1.00 and the radiation onc. said she thought it could be a salivary gland shadow. My report said 0.5 is the acceptable scan level. 

Are you still on the diet? I hope they get the sono scheduled quickly. And seeing that your dr. ordered the sono I am glad that I still insisted my endo keep doing mine every 6 months. She wanted to cut it to once a year with twice a year blood tests. I figure if one has a different number or view etc. then I will still have all my bases covered.

Wishing you all the best. Hang in there!! My thoughts and prayers are with you.


----------



## mrsklamc

I am still on the diet just because I don't want to have to start over if they decide they're going to dose me again. It's not as bad as when I was hypo because I'm actually losing weight and I'm not emotional from being hypo. Plus, when I was hypo I wasn't working so I had little to do besides sit at home & think about all the food I couldn't eat. I am hopeful b/c of the blood test. They have not ever told me a # from a scan. 

Ultrasound is scheduled at 9:10 in the morning. I don't know if they will tell me results right away or not.


----------



## luvmarypoppins

mrsklamc said:


> I am still on the diet just because I don't want to have to start over if they decide they're going to dose me again. It's not as bad as when I was hypo because I'm actually losing weight and I'm not emotional from being hypo. Plus, when I was hypo I wasn't working so I had little to do besides sit at home & think about all the food I couldn't eat. I am hopeful b/c of the blood test. They have not ever told me a # from a scan.
> 
> Ultrasound is scheduled at 9:10 in the morning. I don't know if they will tell me results right away or not.



Well I am so happy you are getting the sono tomm. My endo gets my results first since she ordered it. 

I think its a good sign if they say ok you can go after the sono versus taking more pics. I always have mine done either right in the hosp or the hospitals imaging center in another building. They always say they show it to the radiologist and then they let me go etc.    My endo either calls me or waits if she sees I have an appt. very soon as I always have it done a week before my appt.

Wishing you all the best tomm.

A little OT: Havent seen Jenn posting anything. Hope she has electric after the storm.


----------



## mrsklamc

Person who did the ultrasound said she "doesn't think the doctors will see anything that displeases them."

She also said she knew for sure that the endo wouldn't get back to me until the first of next week, and I was doing way better with that information prior to realizing that Monday's a holiday, so it will be Tuesday probably at the earliest. 

I'm on day 23 of the diet today.


----------



## luvmarypoppins

mrsklamc said:


> Person who did the ultrasound said she "doesn't think the doctors will see anything that displeases them."
> 
> She also said she knew for sure that the endo wouldn't get back to me until the first of next week, and I was doing way better with that information prior to realizing that Monday's a holiday, so it will be Tuesday probably at the earliest.
> 
> I'm on day 23 of the diet today.



Can I honestly ask how are you doing this and putting up with this???? I cant believe they are making you go through this. How can your endo make you wait like this??? I know any radiologist can read something if its STAT etc. 

I know you love your endo but I think she is just making you go through too much diet wise. 

That is why I even told that guy who posted on this thread once that he should get his testing done at the hosp. here bt me because any dr. (my endo or radiologist or surgeon) can pull this stuff up immediately.

I would be on that phone asap and calling your endo office asking for the results so you could go off the diet etc. Even if they say she is not available doesnt she have a pager etc?

You have the patience of Job for sure!! I think I would have lost it by now.
We can even write a complaint e mail to the hospital director and they will get back to us. 

Please know that my thoughts and prayers are with you and I am gonna pray really hard for you!! Hang in there!!


----------



## mrsklamc

Thanks for the prayers- I think it's just different here because things aren't done all at one facility. The radiologists have their own practice, separate from the imaging center. So it has to make it from the imaging center, over to the radiologist, and then over to my doctor's office, who is only in 3 days a week. 

As for how I'm handling it- well, I'm only at about 1/2 way through what I had to go through last year, and I was hypo last year! Plus, I am losing weight on the LID and I have really struggled to lose weight otherwise. 

The Dr is not in tomorrow but her assistant is until noon, and I know she has called me on Friday mornings before, and I know that even though the Dr. is not technically 'in' on Fridays her assistant can reach her, so I am still hopeful that she will call me tomorrow morning with some info.


----------



## WDWDancer

Well I had my pre-op appointment with the surgeon and I am having a TT on the 19th of this month.  My surgeon specializes in thyroid and promised to do his best to hide the scar (I think he is more concerned with the scarring then me).  I am 25 and already have a couple other scars..one more is not a big deal 

I am starting to freak out a little; its just so "real" that the surgery date has been set up.  I am taking 3 wks of work to be safe (I have a very physical/stressful job) do you think that should be ok?  Also, do you all have any tips/tricks for after the surgery?  

Thanks


----------



## mrsklamc

WDWDancer said:


> Well I had my pre-op appointment with the surgeon and I am having a TT on the 19th of this month.  My surgeon specializes in thyroid and promised to do his best to hide the scar (I think he is more concerned with the scarring then me).  I am 25 and already have a couple other scars..one more is not a big deal
> 
> I am starting to freak out a little; its just so "real" that the surgery date has been set up.  I am taking 3 wks of work to be safe (I have a very physical/stressful job) do you think that should be ok?  Also, do you all have any tips/tricks for after the surgery?
> 
> Thanks



I don't have any tips and I can't speak to recovery time as I had spread to lymph nodes. But don't freak out; it wasn't too bad & I am sure you will be ok. The folks on this thread are a great resource.


----------



## luvmarypoppins

WDWDancer said:


> Well I had my pre-op appointment with the surgeon and I am having a TT on the 19th of this month.  My surgeon specializes in thyroid and promised to do his best to hide the scar (I think he is more concerned with the scarring then me).  I am 25 and already have a couple other scars..one more is not a big deal
> 
> I am starting to freak out a little; its just so "real" that the surgery date has been set up.  I am taking 3 wks of work to be safe (I have a very physical/stressful job) do you think that should be ok?  Also, do you all have any tips/tricks for after the surgery?
> 
> Thanks



Glad you have a dr. who specializes in thyroid. My surgeon does about 150 per year. 

My scar is huge but that is because I had to have 3 surgeries in 14 hours and then the 2 drains.

I would say stock up on the soft food and soup like stuff, mashed potatoes, mac and cheese, meatloaf, applesauce, stuff that will be easy to swallow for a while. Stay away from lettuce and bread and french fries. I thought I would choke to death on those. Try things slowly.

Maybe some lifesavers or jolly ranchers too.

I needed about 3 pillows to sleep but I had to have a neck dissection for the lymph node spread. 

I have read that people like the u shaped travel neck pillows.

The actual scar really just has steri strips on it. 

Did they tell you how long you would be in the hosp for? I was in a week but I had alot of complications. I was not your normal thyroidectomy for sure!!

I did take the pain pills for quite a while. I guess I wasnt tolerating the pain well then but I had a massive amount of surgery.

Dont worry if your voice sounds hoarse. It will come back in a while. Just be patient. 

Wishing you all the best.


----------



## mrsklamc

I did not have any problem eating what I wanted so don't be too anxious- LMP has extenuating circumstances so don't be too anxious. 

DH tried to call the dr. and they are out today, gone for the long weekend, so I'm still stuck.


----------



## mrsklamc

God Bless my DH- he called the reception desk and asked if there was any chance the Dr's assistant was there and I could go off the diet. She was, and she said I still need to follow up with the doctor but it looked like the ultrasound just shows scar tissue and there was no reason not to go off the diet.


----------



## luvmarypoppins

mrsklamc said:


> God Bless my DH- he called the reception desk and asked if there was any chance the Dr's assistant was there and I could go off the diet. She was, and she said I still need to follow up with the doctor but it looked like the ultrasound just shows scar tissue and there was no reason not to go off the diet.





Have a wonderful, wonderful week end!!


----------



## luvmarypoppins

Micayla - hope you are enjoying eating "real" food again, no more bunny stuff for you!!

Christine - what are your thoughts on this??   Is it common to get a new blood test for the synthroid adjustment at 6 weeks or 2 months. The endo wrote it for 2 months, which will be in less than 2 weeks.

Right now I am beyond tired, and having mood swings etc. I am wondering if I can call and ask them for it sooner? Or should I just wait, dont know if that is just my endos time frame or the accepted one etc. 

Meanwhile I feel like crap. I only went to the grocery store and cooked dinner and I was wiped out.


----------



## lovemygoofy

When did ya'll start feeling better or different on this thyroid medication? I have to go in for my first blood test this week since starting the meds. Something still isn't right but it's not always wrong.

This is some TMI and I'm sorry but I'm so stinking confused. I had my first cycle since starting the thyroid and the PCOS meds and I had the worst period that I have had since teenage years and I was at least a week early. I had so much cramping and pain that I spent the weekend of hurricane Irene curled up in a miserable ball. In addition I couldn't function. I was just exhausted to the point I slept probably 30 out of 48 hours with no sleeping or pain supplements. 

Now I'm almost a week after my period and I'm still so stinking tired and my legs are hurting quite badly. However the week prior to the period I felt great and was high functioning. 

Does anyone else have this confusion? I tried to get the doctor on the phone last week but with the hospital shutting down and doctors moving the phone lines still weren't accessible at the new place. Good thing I wasn't dying!


----------



## 1Grumpy9

WDWDancer said:


> Well I had my pre-op appointment with the surgeon and I am having a TT on the 19th of this month.  My surgeon specializes in thyroid and promised to do his best to hide the scar (I think he is more concerned with the scarring then me).  I am 25 and already have a couple other scars..one more is not a big deal
> 
> I am starting to freak out a little; its just so "real" that the surgery date has been set up.  I am taking 3 wks of work to be safe (I have a very physical/stressful job) do you think that should be ok?  Also, do you all have any tips/tricks for after the surgery?
> 
> Thanks



Like others say, soft foods will be your best friend.  I was off work for 4 weeks because of my complications with my parathyroid.  My scar is about 4 inches, at first it bothered me, but now it is barely noticable.  The first year after surgery it was a good converstation piece...I just said I was in a bar fight...LOL!!!

Pillows will be another good friend for you.  Also if you are a side sleeper, it will be VERY hard to sleep on your side for about a week.  Explain to the hospital before you go into surgery that you need a soft diet for when you are allowed to eat.  The morning after my surgery they gave me french toast and sausage.  I couldn't eat it because I really couldn't swallow solid foods.


----------



## luvmarypoppins

Tina - sending you a . So sorry you were in so much pain. Dont have any insight into all of those symptoms but I am glad you are getting the blood test this week.

See my above test. My endo wants me to wait 2 months and that is not til the end of next week or around the 18th approx. See my above post, I feel like crap.

I have tried to eat alot of bananas for the leg cramps which I occasionally get and had lately. 

Hoping the blood tests will give your endo some insight etc.

I like your travel list too!!


----------



## Christine

luvmarypoppins said:


> Micayla - hope you are enjoying eating "real" food again, no more bunny stuff for you!!
> 
> Christine - what are your thoughts on this??   Is it common to get a new blood test for the synthroid adjustment at 6 weeks or 2 months. The endo wrote it for 2 months, which will be in less than 2 weeks.
> 
> Right now I am beyond tired, and having mood swings etc. I am wondering if I can call and ask them for it sooner? Or should I just wait, dont know if that is just my endos time frame or the accepted one etc.
> 
> Meanwhile I feel like crap. I only went to the grocery store and cooked dinner and I was wiped out.



I've always been told "around 6 weeks."  I can tell you when I've upped my dosage it does take longer than 6 weeks.  If you can make it 8 weeks, do so.  It will be more reliable.


----------



## Christine

lovemygoofy said:


> When did ya'll start feeling better or different on this thyroid medication? I have to go in for my first blood test this week since starting the meds. Something still isn't right but it's not always wrong.
> 
> This is some TMI and I'm sorry but I'm so stinking confused. I had my first cycle since starting the thyroid and the PCOS meds and I had the worst period that I have had since teenage years and I was at least a week early. I had so much cramping and pain that I spent the weekend of hurricane Irene curled up in a miserable ball. In addition I couldn't function. I was just exhausted to the point I slept probably 30 out of 48 hours with no sleeping or pain supplements.
> 
> Now I'm almost a week after my period and I'm still so stinking tired and my legs are hurting quite badly. However the week prior to the period I felt great and was high functioning.
> 
> Does anyone else have this confusion? I tried to get the doctor on the phone last week but with the hospital shutting down and doctors moving the phone lines still weren't accessible at the new place. Good thing I wasn't dying!



Hi Tina.  It would be unusual for thyroid meds to cause those type of severe menstrual symptoms.  If you get too much thyroid medication and get hyper, it will make your period come more often (early) yet the period will be lighter.  If you don't take enough, the period will be heavy, cramping and much farther apart than normal.

I might be inclined to blame the PCOS meds for this.  The thyroid medication certainly would do "something" to your cycle but not that severe.


----------



## lovemygoofy

Thanks everyone for the feedback! This would be so much easier to figure out if I hadn't started both the PCOS and thyroid medication at the same time.

The PCOS medicine can make me so sick and having to take 2000mg a day now is not easy on my body. I know it's supposed to be helpful in the long run and supposedly with the weight but damn I think I'd rather just be fat and happy and sleepy than all this!


----------



## luvmarypoppins

Christine said:


> I've always been told "around 6 weeks."  I can tell you when I've upped my dosage it does take longer than 6 weeks.  If you can make it 8 weeks, do so.  It will be more reliable.



She is trying going from 200 to 175.


----------



## Christine

luvmarypoppins said:


> She is trying going from 200 to 175.



Either way, probably doesn't matter.  I think 8 weeks will give it absolutely enough time to see what it is.  Six weeks might not be quite enough time for some people.


----------



## dischick4778

Hi All, been reading up but haven't had time to write much lately.  Work is back in full swing with the start of the school year (I work at a college) so there hasn't been much time to relax.  Hope everyone is feeling well, as well as possible.  

I have been doing well on my new dose, not tired, less stressed, overall feeling good physically.  Emotionally it is still draining.  Now that I am feeling better I expect everyone to treat me like they used to and they are all still acting like I'm nutty.  I finally said to DH last week - I'm not crazy, please stop treating me like I'm nuts.  Oh well guess it takes time.  

Wishing everyone a nice night.


----------



## luvmarypoppins

Jenn - good to see you posting. I used to work in the financial aid office of a college. I know what you mean about how people treat you. My ds I think are the worst at this point. No understanding whatsoever. Ds23 is the most understanding of the 3 of them.

I freaked out yest. I was trying to control it. It had to do with being scared and getting wet on my bad shoulder with a water balloon at a picnic. Dh and I decided to just leave the picnic. I think it was a combo of being frightened at the same time too.  Later on I took a huge nap. So not like me normally.

Tomm. I am going to the new eye specialist. Will be interesting to hear her insight. 

Anyone read the latest Genzyme thyrogen update? Low supplies in all of 2012 too. Well I know I will get the blood test and I hope my rad. onc. will be able to get the thyrogen next June for me. If she is #6 on their list, I hope it will be good.


----------



## luvmarypoppins

Well I am back from the eye surgeon/dr. and it was not good news

I am glad dh was with me for sure. I think I had about 6 needles in my eye/tear duct area. It was actually one needle I think but she kept jabbing it alot. After about the 3rd time, she told me to try and hold really still. I asked her if dh could hold my hand. He did. Later he told me I had a vice grip on his hand

She told me that the radiation has scarred and damaged my L tear duct. I need to have surgery and they will create a new channel and put about 6 stints in it that will be taken out in about 6 weeks.

The only good thing is that she is pregnant and going on maternity leave and wont be back to april, so the surgery will be scheduled then. She said I could wait since I have had this for a while but if it gets infected I have to call another surgeon and he will do it. The other guy has operated on people from my church so I know he would be ok too.

She said I will have it in the main hosp. due to my medical history and I should come home that day and it will be about an hour long. I just think I need the time to prepare myself again for this. I hope it does not interfere with my May disney trip or I will wait till June. 

I asked her what if I need radiation again, will this happen etc. She said she would treat me pre radiation and  operatively put stents in both eyes just to keep them open so the scar tissue wont form. 

So there you have it, another adventure on the thyroid cancer coaster. 

Oh and I scheduled my blood test for saturday. If that is bad news, I will deal with it but I wont be so happy. But God is always there for me, so this will be a piece of 

She said she could do the surgery up the nose with the scope but I told her I didnt think that was such a good idea as the ent surgeon already told me there were problems there that I was born with. I told her she could look at his pictures etc. So she said it would just be better to cut my face since that is the procedure that has better results.

The one thing that bothered me was that when I went to my regular eye dr. and told her the endo thought something was wrong with my tear duct, all she did was just press against it and said nothing was wrong. This is the dr. who has ovarian cancer and showed me her port etc, so I felt bad and didnt want to press the issue. Then when I went for my endo check up again in July she saw the tears and told me to go to this specialist at the univ. hosp. I told dh, it seems that only the univ. drs. etc. and not our normal ones around here can ever diagnose stuff with us. Its very disheartening. Dh said just go to the univ. next time for anything etc. Dh also had a problem that the reg. gastro guy here said was nothing. The univ. dr. said dh was one of the worst cases he had etc. So lessons learned, follow your gut, your great endo and dont take no for an answer.


----------



## WDWDancer

Thanks everybody for the tips.  I have been trying to get all grocery shopping, cleaning, etc done this week so I don't have to worry about it next week after the surgery.  I also see an oncologist/hematologist who has been watching a couple lymph nodes (when I first went to the Endo she thought I was presenting more with a lymphoma and she sent me to him) and he has coordinated with the surgeon to remove those as well....looks like Monday is going to be fun.

I will keep you all updated - thanks again!!


----------



## mrsklamc

LMP - I am sorry to hear that you will need eye surgery. Sometimes it feels like this stuff just never ends. 

WDW Dancer- Will be thinking of you. Take it easy and you will be healed before you know it. 

Passing on a diet recipe I don't know if I've posted before:

http://nuttykitchen.com/2010/06/01/coconut-whipped-cream/


----------



## dischick4778

luvmarypoppins said:


> Well I am back from the eye surgeon/dr. and it was not good news
> 
> I am glad dh was with me for sure. I think I had about 6 needles in my eye/tear duct area. It was actually one needle I think but she kept jabbing it alot. After about the 3rd time, she told me to try and hold really still. I asked her if dh could hold my hand. He did. Later he told me I had a vice grip on his hand
> 
> She told me that the radiation has scarred and damaged my L tear duct. I need to have surgery and they will create a new channel and put about 6 stints in it that will be taken out in about 6 weeks.
> 
> The only good thing is that she is pregnant and going on maternity leave and wont be back to april, so the surgery will be scheduled then. She said I could wait since I have had this for a while but if it gets infected I have to call another surgeon and he will do it. The other guy has operated on people from my church so I know he would be ok too.
> 
> She said I will have it in the main hosp. due to my medical history and I should come home that day and it will be about an hour long. I just think I need the time to prepare myself again for this. I hope it does not interfere with my May disney trip or I will wait till June.
> 
> I asked her what if I need radiation again, will this happen etc. She said she would treat me pre radiation and  operatively put stents in both eyes just to keep them open so the scar tissue wont form.
> 
> So there you have it, another adventure on the thyroid cancer coaster.
> 
> Oh and I scheduled my blood test for saturday. If that is bad news, I will deal with it but I wont be so happy. But God is always there for me, so this will be a piece of
> 
> She said she could do the surgery up the nose with the scope but I told her I didnt think that was such a good idea as the ent surgeon already told me there were problems there that I was born with. I told her she could look at his pictures etc. So she said it would just be better to cut my face since that is the procedure that has better results.
> 
> The one thing that bothered me was that when I went to my regular eye dr. and told her the endo thought something was wrong with my tear duct, all she did was just press against it and said nothing was wrong. This is the dr. who has ovarian cancer and showed me her port etc, so I felt bad and didnt want to press the issue. Then when I went for my endo check up again in July she saw the tears and told me to go to this specialist at the univ. hosp. I told dh, it seems that only the univ. drs. etc. and not our normal ones around here can ever diagnose stuff with us. Its very disheartening. Dh said just go to the univ. next time for anything etc. Dh also had a problem that the reg. gastro guy here said was nothing. The univ. dr. said dh was one of the worst cases he had etc. So lessons learned, follow your gut, your great endo and dont take no for an answer.



I'm sorry to ask but I guess I'm not all caught up - are you saying the RAI damaged your tear ducts?  I didn't realize that was possible.  What were your symptoms if you don't mind me asking.  I'm curious because lately my eyes have been tearing like I'm crying for no reason.  I thought it was allergies, never related it to my thyroid issues.  Is this what happened to you?

Sorry to hear that it's so complicated and I truly hope its a smooth process for you.


----------



## luvmarypoppins

WDWDancer said:


> Thanks everybody for the tips.  I have been trying to get all grocery shopping, cleaning, etc done this week so I don't have to worry about it next week after the surgery.  I also see an oncologist/hematologist who has been watching a couple lymph nodes (when I first went to the Endo she thought I was presenting more with a lymphoma and she sent me to him) and he has coordinated with the surgeon to remove those as well....looks like Monday is going to be fun.
> 
> I will keep you all updated - thanks again!!



Wishing you all the best Monday. You will be in my prayers.  That was interesting that you said about the lymphoma because they thought during one of the 5 times they were biopsying me that I might have lymphoma too.


----------



## luvmarypoppins

Jenn - that is what exactly happened to me. People were asking me, why are you sad etc. I said I am not, my eyes just keep tearing. Sometimes in the morning there would be some crusty stuff around my eye too.

And as I now know, you cant just push on the tear duct and say its only blephitis or something like that and say nothing is wrong. Eye drops wont help it (this is what my regular eye dr. did).

This specialist I went to is an ocular reconstruction surgeon, cosmetic eye surgeon and also does thyroid eye disease. She knew exactly everything and explained it to me.

Well if you are having those symptoms too, I would say go to an eye doctor, but they will have to do the thorough testing for a blocked tear duct, not fun, but it gives you an accurate diagnosis.


----------



## 4under4

WDWDancer said:


> Well I had my pre-op appointment with the surgeon and I am having a TT on the 19th of this month.  My surgeon specializes in thyroid and promised to do his best to hide the scar (I think he is more concerned with the scarring then me).  I am 25 and already have a couple other scars..one more is not a big deal
> 
> I am starting to freak out a little; its just so "real" that the surgery date has been set up.  I am taking 3 wks of work to be safe (I have a very physical/stressful job) do you think that should be ok?  Also, do you all have any tips/tricks for after the surgery?
> 
> Thanks



I was worried about scarring, but my (wonderful!!!) Surgeon offered to use surgical glue at the skin level.  It is nearly UNDETECTABLE less than 2 years post surgery.  Might be something to talk to him about before you go you.  Good luck with your surgery.


----------



## 1Grumpy9

I went to the family doctor this morning and he said I was down 10lbs from the last time I was at their office (March 2011).  Now I know that I was at least 4 lbs heavier when I went to the endo the beginning of August.  So far with the change of meds, I am down 14 lbs!!!  I am extremely happy about that!!!


----------



## dischick4778

luvmarypoppins said:


> Jenn - that is what exactly happened to me. People were asking me, why are you sad etc. I said I am not, my eyes just keep tearing. Sometimes in the morning there would be some crusty stuff around my eye too.
> 
> And as I now know, you cant just push on the tear duct and say its only blephitis or something like that and say nothing is wrong. Eye drops wont help it (this is what my regular eye dr. did).
> 
> This specialist I went to is an ocular reconstruction surgeon, cosmetic eye surgeon and also does thyroid eye disease. She knew exactly everything and explained it to me.
> 
> Well if you are having those symptoms too, I would say go to an eye doctor, but they will have to do the thorough testing for a blocked tear duct, not fun, but it gives you an accurate diagnosis.



Thanks for the info.  Is it possible for this to happen a year later?  I have been fine as far as my eyes are concerned until the past month.  My surgery and treatment were June/July 2010.  I have an appointment with my endo in a few weeks and plan to ask her.  Eye doctor appointment would be next.


----------



## luvmarypoppins

WDW Dancer - said some extra prayers for you today

Jenn - I dont know, but I told her I did get the original symptoms not too far after the rai. I would definetey get it checked out, you only have 2 eyes.

Well someone from the endos called. I dont even know who she was, she said "Oh I normally dont do this. She said, the dr. wants me to tell you the blood  tests were good?? I said are you talking about the blood tests I just had saturday? and she said yes, Wowsa, that was so fast for sure. My reg. dr. takes 5 weeks to call me back. So I told her I was expecting to talk to the dr. as I wanted to tell her I was so, so tired, wanted to tell her that I needed surgery etc. She said, oh are you having palpatations? I said, sometimes I get them, she knows about it and I havent been to the cardiologist yet. She said, oh it sounds like she should call you, I said YES!!

Then she was giving me the reclast run around. That is so frustrating. I need this infusion as the synthroid is ruining my bones and I cant get the med etc. I tried getting it before and all I get its the run around from the ins. co., its covered but they dont know how to get it with the right provider etc?? Frustrating for sure. They said they would get it for me, I told this lady that. She said, oh I think thats only for medicare patients, O.K . I dont know who or what to believe anymore.

And I totally forgot they cancelled my Jan. visit and I needed to rebook it because...

I am totally stressed right now as my dh was involved in an accident that totalled our van. The other girl was talking on her cell phone and ran a red light the guy behind my dh saw her talking. My dh was going 45 mph I think he said. Praise God he was safe, only a sore knee. A second or two sooner or later and he would have possibly not made it. Things can be replaced, but my dh is def. not replaceable

Christine - so they said either my tsh I think is .01 and last time, in July it was 0.02 so she said to still stay on the 175 synthroid, Does this sound right? This girl was confusing me about everything.  I would have much rather spoken to the endo as I usually do.


----------



## mrsklamc

dischick4778 said:


> Thanks for the info.  Is it possible for this to happen a year later?  I have been fine as far as my eyes are concerned until the past month.  My surgery and treatment were June/July 2010.  I have an appointment with my endo in a few weeks and plan to ask her.  Eye doctor appointment would be next.



I don't know about eyes but I had virtually no symptoms and then 10 months after my first treatment dose my cheek puffed up like a chipmunk while eating. They told me that since the RAI continues working over time....

So while I hope that's not what it is, I would def. get it  checked ASAP.


----------



## mrsklamc

LMP- I am so glad your DH is ok. 

It is so frustrating when you don't get the answers you need.


----------



## Christine

luvmarypoppins said:


> Christine - so they said either my tsh I think is .01 and last time, in July it was 0.02 so she said to still stay on the 175 synthroid, Does this sound right? This girl was confusing me about everything.  I would have much rather spoken to the endo as I usually do.



Well, that's not much of a change.  In fact 0.01 is LOWER than 0.02 so that would mean you are more hyper.  Are you sure she didn't say 0.1 versus 0.01?  0.01 is almost totally supressed while 0.1 is still below normal but closer to normal (that starts at 0.5).  At any rate, I can't imagine that you would be tired at 0.1?  Do you think you can get that clarified?  I would probably ask if you could get a copy of those results and offer to go pick them up (they are much more amenable to giving them out if they don't have to deal with mailing them).


----------



## luvmarypoppins

Well guess who just called me back, my wonderful endo, gosh I love that lady!!

She said the TSH is 0.01 and the T4 is 14.6. She asked me if I wanted her to lower it if I was jittery. I said no, the problem is I am so tired. She said she does not know why. Hmm, I am thinking of seeing that cardiologist. Heart problems are bad in my family as I am the only one alive right now and they all died at a pretty young age from heart stuff.

She rescheduled my visit herself, wowsa!  One day I might just call the office to verify that. She said she put me in her black book, gosh, even the rad. onc. has one of those too. Must be something they do there?

She is checking with the office about getting me the reclast again and she told me to take 600mg of calcium a day, she said tums was fine. I told her my bones hurt alot.

Went over the eye stuff. She said as soon as I told her my symptoms she knew what it was. She said its pretty common after the RAI. She says she has other patients who have had this, so its not just me again. I forgot to ask her but...
Christine, do you know any info about this RAI and the eye stuff. I was wondering if the dose matters at all. As mine was 200 and Jenn is complaining about eye issues and I think her RAI was 150?


----------



## Christine

luvmarypoppins said:


> Christine, do you know any info about this RAI and the eye stuff. I was wondering if the dose matters at all. As mine was 200 and Jenn is complaining about eye issues and I think her RAI was 150?



I don't know about the eye stuff.  I had three doses (29.9, 150, and 150). I do have eye issues.  Dry eye to be specific.  But my onset was in 2002/2003 which was about 5-6 years AFTER my last RAI treatment.  I can't really blame it on that I guess.  I did get the salivary gland issues, just like Micayla did, about 8 months after my first large-dose RAI.

I use Restasis regularly and it gets me through.  But for some reason, my eyes no longer produce much moisture.


----------



## mrsklamc

LMP- I was tired when I was hyper, because I could not sleep.


----------



## dischick4778

I did have 150 of RAI last year.  My Endo is still out on maternity leave so I'm going to wait for my appointment with her mid October.  It's not so bad and some days I don't notice it at all.  We will see.  Just not comfortable with my endo's fill in after she prescribed me the wrong dose of Synthroid.


----------



## WDWDancer

Thank you everybody for the prayers.  I came home late last nightafter 2 nights in the hospital.  The surgery went alot faster then they expected; according to the surgeon I have the pefect neck for these surgeries (I guess that was a compliment) LOL  My thyroid was much more diseased then they expected with innumberable cyst and tumors all over it.  I am still waiting on the path report but he said there was nothing that struck him as alarming so keeping our fingers crossed for the best.

I lose my voice at times and it is a lot weaker then normal but at least I can still talk.  My biggest complaint is just being sore; trying to find a comfy way to sit/sleep.

Thanks again


----------



## luvmarypoppins

WDW Dancer - so glad you are home from the surgery and recovering. 

The voice will come back over time. I was told, just dont shout or try to raise your voice because that just makes things worse as they are healing.

I slept with about 3 pillows and adjusted them accordingly.

I liked resting in the lazy boy recliner as opposed to the couch. More support for the back of my neck.

How is the eating/swallowing going?

Bet you will be glad when you get the path report. But your dr. does sound encouraging. So hopefully you will get some good news.

Wishing you all the best.


----------



## dischick4778

WDWDancer said:


> Thank you everybody for the prayers.  I came home late last nightafter 2 nights in the hospital.  The surgery went alot faster then they expected; according to the surgeon I have the pefect neck for these surgeries (I guess that was a compliment) LOL  My thyroid was much more diseased then they expected with innumberable cyst and tumors all over it.  I am still waiting on the path report but he said there was nothing that struck him as alarming so keeping our fingers crossed for the best.
> 
> I lose my voice at times and it is a lot weaker then normal but at least I can still talk.  My biggest complaint is just being sore; trying to find a comfy way to sit/sleep.
> 
> Thanks again



Feel good!  Rest up!!  Just remember to accept help from those around you and not try to do too much yourself.  Wishing you a speedy recovery.


----------



## luvmarypoppins

OT - Micayla, I thought of you when dh told me this today. Our rent a car because of the accident has Indiana plates on them, hmm, nice blue color, but here in NY they stick out like a sore thumb.

But at work, someone came up to dh and asked if he was from Indiana, no, told them the accident story. They said they went to Univ. of Indiana and have not met anyone from IN here in NY.

Its the closest I am gonna get to you and IN.


----------



## WDWDancer

Thanks everyone - yep I have been sleeping in the recliner and with tons of pillows.  The eating/swallowing is better...I really noticed the difference in food textures (strange to me).  I went out for the first time yesterday to a friends housewarming after a hour I was wiped out. The scar is starting to itch and I cannot wait to get the bandage off Tuesday

Did any of you have ridicioulsy low blood pressure?  Mine had been running borderline high until the surgery.  The entire time up I was in the hospital and still it is running very low 90's/50's I feel ok not dizzy or anything just strange....


----------



## WDWDancer

Well back from the surgeon and surprise of all surprise's they discovered Papillary Carcinoma.  It was a small area and did not spread outside the thyroid.  I have an appointment in the morning to see the Endo and discuss what's next.

Question for those of you who have gone through this will I do the radioactive iodine??


----------



## luvmarypoppins

WDWDancer said:


> Well back from the surgeon and surprise of all surprise's they discovered Papillary Carcinoma.  It was a small area and did not spread outside the thyroid.  I have an appointment in the morning to see the Endo and discuss what's next.
> 
> Question for those of you who have gone through this will I do the radioactive iodine??



So sorry you had to hear the news no one wants to hear. Its the beginning of a journey. But we are all here to support you and have done this too.

Did you get a copy of the path report? That is telling in itself. I have been reading that alot of drs. are taking into consideration tumor size etc. when considering rai lately.

Also who decides if you are getting the rai, your endo or oncologist? I know they do it differently in many places. I have a whole cancer team since I go to a teaching hosp. The  rad. onc. decides if I was to get the rai and what the dose would be. Mine was a no brainer, 12.5 tumor, then another 4 cm tumor and then 6 positive out of 46 lymph nodes, plus the rare aggressive variant. They figured out mine by that and age and weight. 

The standard dose is 150 but you could get less etc. 

Wishing you all the best. You will get through this. Stay strong. Ask any questions that you may have. 

Maybe keep a little notebook and write things down etc.


----------



## Christine

WDWDancer said:


> Well back from the surgeon and surprise of all surprise's they discovered Papillary Carcinoma.  It was a small area and did not spread outside the thyroid.  I have an appointment in the morning to see the Endo and discuss what's next.
> 
> Question for those of you who have gone through this will I do the radioactive iodine??



In my opinion, no matter how small, you should have radioactive iodine.  The old way of thinking was that if tumors were under 1 cm, surgery was enough.  What the studies have found lately is that even microcarcinomas have the ability to have lymph node involvement (even if the thyroid capsule has not been invaded by the tumor). It's an odd thing.  Radioactive iodine is like "mopping up" what the surgeon cannot see.

I'm sorry for your bad news....


----------



## 4under4

I'm so sorry.    You will get through this, and when it's over, or should I say when the roughest part of the process is over, you will have a great reason to celebrate... I went to WDW 

I agree with PP... have the RI treatment.  It will give you a lot of peace of mind knowing it's all been wiped out.  It also makes the ongoing hormone replacement easier since there won't be any pesky little "natural" hormone amounts to account for.  

For now, rest, rest, rest.


----------



## mrsklamc

I am sorry you got that news but I would agree, go ahead and get the RAI. At 150 the side effects really weren't too bad compared to the peace of mind.


----------



## mrsklamc

BTW, I was at 137 6 days a week and 150 1 day a week...my TSH was 0.072 and she dropped me to 112 daily...That seems like a huge swing?


----------



## Christine

mrsklamc said:


> BTW, I was at 137 6 days a week and 150 1 day a week...my TSH was 0.072 and she dropped me to 112 daily...That seems like a huge swing?



That is a huge drop.  I'm wondering why not trying just .137 6 days a week or even .125 for 7 days.

I take .137 5 days a week, 1/2 of a .137 on Saturday, and nothing on Sunday.  Keeps me at a perfect level.  It I go to .137 all week, I am almost totally supressed.  If I go to .125 all week, my TSH is near 4.0.  A big difference.


----------



## WDWDancer

Thank you everybody...it was shocking news to hear and I don't think it has fully sinked in.  

I'm 25 and since being diagnosed with the thyroid goiter I have been consistently told not to worry its 99% non-cancerous, your young, no family history, healthy...no need to have surgery done at this time.  I wasn't feeling better on the medication and more nodules had appeared on the left lobe at my last ultrasound; I was done dealing with the constant ultrasound and FNA's and fought for the removal...surprise 60% of my thyroid was covered in nodules and cyst; I'm just happy we got it early.

It was 1.1 cm so a very small section and the Endo is optimistic that they removed all of it with the surgery.  She wants me to start the Thyroid Suppression keep me between .1-.4 and then in December have an ultrasound to see if any thyroid tissue was left, a PET scan and/or CT of the neck to check lymph nodes, and also do a blood test to check for any cancer markers?  Does this sound right?  She doesn't feel that I need the RAI  and said it wouldn't be beneficial for me at this time...we're better off waiting to see what the results in Dec bring and then if needed we can do it.  

Part of me says ok hold off wait and see while the other part is freaking out and says give me the RAI I don't care if its unnecessary.


----------



## luvmarypoppins

WDW Dancer - I am not so knowledgeable about all of this as Christine is, I am still learning.

You are so young too.. I feel like the thy. cancer old lady here. I was dx. when I turned 50 and it will be 3 years in jan. for me.

If you are having any kind of scan, make sure its no iodine, no contrast etc. very important because iodine scans mess up the rai (Micayla can share about that).

I had the pet scan before I had my surgery and I had a ct scan but that was for a bowel obstruction when I was on the lid. I was demanding they use no contrast. Good I wa throwing up anyway and couldnt drink it.

What is your synthroid dose? I know it takes about 8 weeks for your body to adjust, hence your dec. blood test.

I am sure the others will chime in. Wishing you all the best.


----------



## kimmie

I am so glad I found this thread!
My dr found a nodule on my thyroid in July at my physical.  I never even noticed anything!  Anyway, after trying to get an ultrasound and an ENT appointment, they did a fine needle biopsy and now I am having surgery to remove the left side of my thyroid next Tuesday.  The ENT said it is Hurthle  cell neoplasm and they cannot determine if its cancer or not.  

I just do not understand!

Can you all help me understand and get through it please.
He did say that 80 percent are just fine, but I worry about the 20 percent and what will hapen after that.  He talked about an endo and oncologist after with radioactive iodine?  I am very confused.

Thanks!


----------



## Christine

WDWDancer said:


> It was 1.1 cm so a very small section and the Endo is optimistic that they removed all of it with the surgery.  She wants me to start the Thyroid Suppression keep me between .1-.4 and then in December have an ultrasound to see if any thyroid tissue was left, a PET scan and/or CT of the neck to check lymph nodes, and also do a blood test to check for any cancer markers?  Does this sound right?  She doesn't feel that I need the RAI  and said it wouldn't be beneficial for me at this time...we're better off waiting to see what the results in Dec bring and then if needed we can do it.
> 
> Part of me says ok hold off wait and see while the other part is freaking out and says give me the RAI I don't care if its unnecessary.



I was 31 when diagnosed and my tumor was just under 1 cm.  I did have the RAI.  I was told that even though the surgeon takes the whole gland, there are tiny remnants and cells that they just can't manage.  This will not show up on an ultrasound but possible will on a PET.  I would not let them do a CT with contrast because it will interfere with any possible future treatments.

Also, checking the bloodwork for thyroid cancer markers (thyroglobulin) is unreliable unless RAI is completed.


----------



## Christine

kimmie said:


> I am so glad I found this thread!
> My dr found a nodule on my thyroid in July at my physical.  I never even noticed anything!  Anyway, after trying to get an ultrasound and an ENT appointment, they did a fine needle biopsy and now I am having surgery to remove the left side of my thyroid next Tuesday.  The ENT said it is Hurthle  cell neoplasm and they cannot determine if its cancer or not.
> 
> I just do not understand!
> 
> Can you all help me understand and get through it please.
> He did say that 80 percent are just fine, but I worry about the 20 percent and what will hapen after that.  He talked about an endo and oncologist after with radioactive iodine?  I am very confused.
> 
> Thanks!



Hurthle cell is a type of thyroid cell.  Sometimes these cells are benign and sometimes they are cancerous.  My cousin had a HUGE follicular "neoplasm".  They couldn't do a full pathology until he had surgery (the sample isn't enough).  He turned out to have a benign neoplasm.  This hopefully will be the same with you.  Statistics are on your side!


----------



## kimmie

Thank You Christine!  

I am hopeful that it will be benign.

It is just bothersome to know that you go throught the biopsy and they still can't give you any answers!

Does anyone know what the recovery time is for this kind of surgery?  I am hoping I will be back on my feet in no time!

Thanks.


----------



## Christine

kimmie said:


> Thank You Christine!
> 
> I am hopeful that it will be benign.
> 
> It is just bothersome to know that you go throught the biopsy and they still can't give you any answers!
> 
> Does anyone know what the recovery time is for this kind of surgery?  I am hoping I will be back on my feet in no time!
> 
> Thanks.



About a week, but you aren't bed ridden by any means.

I had a REALLY bad sore throat the day after surgery but it is a sore throat that improves very quickly.  The surgeon told me this, I didn't believe him, but he was spot on.

I felt kind of tired the first week and my neck was sore but it is generally how I feel after any surgery (some breast surgeries I had made me feel the same way).  I kind of remember them not wanting me to be driving or in a car for a week or two because they didn't want to chance that I'd have any sudden stops or starts that would put pressure on my neck.  It wasn't forbidden or anything but just something that talked to me about.


----------



## luvmarypoppins

kimmie said:


> I am so glad I found this thread!
> My dr found a nodule on my thyroid in July at my physical.  I never even noticed anything!  Anyway, after trying to get an ultrasound and an ENT appointment, they did a fine needle biopsy and now I am having surgery to remove the left side of my thyroid next Tuesday.  The ENT said it is Hurthle  cell neoplasm and they cannot determine if its cancer or not.
> 
> I just do not understand!
> 
> Can you all help me understand and get through it please.
> He did say that 80 percent are just fine, but I worry about the 20 percent and what will hapen after that.  He talked about an endo and oncologist after with radioactive iodine?  I am very confused.
> 
> Thanks!



Wishing you all the best on Tuesday. I found a few pillows helped with the sleeping post op and sitting in the lazy boy helped with the neck issues too as opposed to just sitting on a couch.


----------



## luvmarypoppins

Opinions needed....so remember my endo said she would lower my synthroid even more if I felt jittery. But I told her I was fine.

Well lately I have not been able to sleep at all at night. Last night I think I slept about 2 hours max and the other  nights hardly at all either. I think my heart is racing. I really cant tell. I dont know if its physical stuff or stress over trying to get dh a new vehicle because of the accident. 

I am debating whether or not to have her lower it again as she just did it, I went from 200 to 175, so I dont know what the next amount lower is and will it be noticeable, then I will have to wait again for the 8 week blood test. 


So what would you do??


----------



## Christine

luvmarypoppins said:


> Opinions needed....so remember my endo said she would lower my synthroid even more if I felt jittery. But I told her I was fine.
> 
> Well lately I have not been able to sleep at all at night. Last night I think I slept about 2 hours max and the other  nights hardly at all either. I think my heart is racing. I really cant tell. I dont know if its physical stuff or stress over trying to get dh a new vehicle because of the accident.
> 
> I am debating whether or not to have her lower it again as she just did it, I went from 200 to 175, so I dont know what the next amount lower is and will it be noticeable, then I will have to wait again for the 8 week blood test.
> 
> 
> So what would you do??



Were you jittery when you were on the 200 dosage?  Is this jittery feeling new?  If it has been going and is still going on with 175, I might trying lowering it.  The next dosage is 150 but, as you know, there are ways to go down slower such as taking 175 for half the week and 150 half the week if you don't want to a full dosage decrease.  Often, when I was feeling jittery and had heart palps, my endo would tell me totally STOP the meds for 3 days to see how I felt, then resume and a smaller dosage.  For me, I take 137 for 5 days a week, half of 137 on Saturday and nothing on Sunday.  This is gets me to my "sweet spot" with the TSH.

What was your latest TSH at your 8 week test?


----------



## luvmarypoppins

At 200 in July my tsh was 0.02 and when she reduced it to 175 my 8 week blood test in sept. was 0.01.

She had also mentioned before about a beta blocker? I dont know what it does, but I dont want to mask any other cardiac stuff that I have not been evaluated for (which runs in my family) versus a direct result of synthroid stuff etc.


----------



## Christine

luvmarypoppins said:


> At 200 in July my tsh was 0.02 and when she reduced it to 175 my 8 week blood test in sept. was 0.01.
> 
> She had also mentioned before about a beta blocker? I dont know what it does, but I dont want to mask any other cardiac stuff that I have not been evaluated for (which runs in my family) versus a direct result of synthroid stuff etc.




Now I remember!!  Didn't you have some doubt as to whether it was .01 or .1?

Seems odd that the TSH would go lower. 

Going on a beta blocker is standard procedure when very suppressed.  Lots of people do it and I did it once because my heart was always racing.  Of course mine was due to anemia to find out later.  But at any rate, the beta blocker really does calm you down and slow down the heart rate.  It wasn't that bad.

But I think you could still do some T4 medication adjusting before you get to that point.


----------



## Tinker'n'Fun

Hello everyone. I don't usually post but do read. I have Hashimoto's thryoiditis, had my total thyroid removed at pre-cancerous, and have been pretty normal ever since.

Lately I have been really blah, tired, weight, sweats, etc. They are upping my synthroid from .137 to .150. This is the first change is many years, so I am a bit out of the loop.

I know you all are very educated.

So my levels are off and DH will bring home the results (he had an appt today). Am I Hyper or Hypo, as I would like to look up the symptoms and try to fit the problems I have been having to the thyroid so I can then concentrate on the others. I have been having a really hard time and I thought it was just perimenopause.

Thanks everyone!


----------



## mrsklamc

Tinker'n'Fun said:


> Hello everyone. I don't usually post but do read. I have Hashimoto's thryoiditis, had my total thyroid removed at pre-cancerous, and have been pretty normal ever since.
> 
> Lately I have been really blah, tired, weight, sweats, etc. They are upping my synthroid from .137 to .150. This is the first change is many years, so I am a bit out of the loop.
> 
> I



Sorry  with the sweats I would say hyper. Do you know how you've been sleeping? I don't sleep well when hyper and then I'm always tired. The rest of the symptoms could be either. Gaining weight seems counterintuitive, but some people feel driven to eat more when hyper.


----------



## Tinker'n'Fun

mrsklamc said:


> Sorry  with the sweats I would say hyper. Do you know how you've been sleeping? I don't sleep well when hyper and then I'm always tired. The rest of the symptoms could be either. Gaining weight seems counterintuitive, but some people feel driven to eat more when hyper.



Okay DH brought home the paperwork, and I feel horrible that I haven't kept up on what is what, but I am here now. The dr. wasn't expecting a change since I haven't changed in forever. So please also let me know what other tests I should be asking for:

TSH 8.64
T4, Free 1.1
FSH 13.2 (not sure if this was a thyroid or hormone level as they are checking those also)

And for those who may be able to help me with the are you hitting perimenopausal stage I also have these results:

LH 31.8
Progesterone <.05

So that's what I have. Thanks to anyone who can help.

Forgot to add, as for sleeping it is one of my problems, I fall asleep on the drop of a hat, sometimes mid sentence.


----------



## mrsklamc

Well I guess you're hypo- maybe the sweats are to do with perimenopause? FSH- that I know of- is follicule stimulating hormone?


----------



## Christine

Tinker'n'Fun said:


> Okay DH brought home the paperwork, and I feel horrible that I haven't kept up on what is what, but I am here now. The dr. wasn't expecting a change since I haven't changed in forever. So please also let me know what other tests I should be asking for:
> 
> TSH 8.64
> T4, Free 1.1
> FSH 13.2 (not sure if this was a thyroid or hormone level as they are checking those also)
> 
> And for those who may be able to help me with the are you hitting perimenopausal stage I also have these results:
> 
> LH 31.8
> Progesterone <.05
> 
> So that's what I have. Thanks to anyone who can help.
> 
> Forgot to add, as for sleeping it is one of my problems, I fall asleep on the drop of a hat, sometimes mid sentence.




You are hypothyroid.

It would also help if you could print the lab ranges that should be next to you result.

FSH would be a hormone they would check to see if you are in menopause.  I think if FSH is very high, it indicates menopause.

What are the ranges for those tests?


----------



## Tinker'n'Fun

Ugh, I printed a whole reply but I don't know what happened to it. The tests have reference ranges, not just one... for example

My LH is 31.8 and to the right it states reference range "P", and under the number is:

Reference Range
Female
Follicular 1.9 - 12.5
Mid-Cycle 8.7 - 76.3
Luteal .5 - 16.9
Post Menopausal 10.0 - 54.7
The it gives males references.

Now the P can't stand for Post Menopausal as I am still getting my cycle. Last month it was on time, but lasted 1 day. I am now 5 days late this month. I was every 26 days for over 30 years, only late for pregnancy. I am 45. My tubes are rubber banded.

These are the symptoms which could be thyroid or something else. It's the something else that I was hoping these blood tests would show. Drs. Office only said that they thought I was Mid Cycle and the blood test was taken on day 18 of my cycle.

Extremely tired to the point of falling asleep during conversations
20 pound weight gain in 4 months
Re-occurance of GERD
Sweats and extreme body heat every day
Moody
Sensitive to cold
Pain where my gallbladder was removed and ovary pain even though my tubes are tied (this is a new extreme pain - I have Fibro so I know this is different)
Joint Pain
Major increase in Libido some much even DH runs away...
Just plain exhausted, I have not done much in the last month or so, no matter how hard I try.

I am sure a lot is my thyroid, but not all.

Lastly, can anyone explain why my TSH 3rd. generation could be .76 on 4/22/11 and 6 months later be 8.63?? That worries me. It is a huge change, most since they took out my thyroid. (I have no thyroid due to Hashimoto's Thyroiditis).

DD has a OB/GYN on Friday and I a going to make an appt with them since I usually go to my GP, but I think it is time to go back to the specialist.

My Synthroid was upped from .137 to .150 and I took the first pill today.

If you can help with anything, I would be grateful. Thank you!


----------



## angwill

Did you get a result for anitnuclear antibodies/ANA?  If so was that high?  Ask your doctor next time if they tested for autoimmune issues an/or Arthritis or RA.  It's worth asking and if they did not test for them ask them if they would.  It is an innexpensive blood test they can ask for when checking your TSA next time.


----------



## Christine

> Ugh, I printed a whole reply but I don't know what happened to it. The tests have reference ranges, not just one... for example
> 
> My LH is 31.8 and to the right it states reference range "P", and under the number is:
> 
> Reference Range
> Female
> Follicular 1.9 - 12.5
> Mid-Cycle 8.7 - 76.3
> Luteal .5 - 16.9
> Post Menopausal 10.0 - 54.7
> The it gives males references.
> 
> Now the P can't stand for Post Menopausal as I am still getting my cycle. Last month it was on time, but lasted 1 day. I am now 5 days late this month. I was every 26 days for over 30 years, only late for pregnancy. I am 45. My tubes are rubber banded.



This is why most doctors won't even run hormone tests--they are very unreliable until you have missed a few periods.  Mine won't even do it.  I don't think you're going to find any answers on these female hormone blood tests.



> Extremely tired to the point of falling asleep during conversations


Thyroid


> 20 pound weight gain in 4 months


Thyroid


> Re-occurance of GERD


Thyroid


> Sweats and extreme body heat every day


Peri (hypothyroid will not cause this)


> Moody


Both


> Sensitive to cold


Thyroid



> Pain where my gallbladder was removed and ovary pain even though my tubes are tied (this is a new extreme pain - I have Fibro so I know this is different)


The GERD could be giving you the phantom gallbladder pain.
Ovaries can still hurt because a tubaligation does not affect ovaries.  You are still ovulating.


> Joint Pain


Both



> Major increase in Libido some much even DH runs away...



Definitely peri (erratic hormone surges will cause this--lucky you).



> Just plain exhausted, I have not done much in the last month or so, no matter how hard I try.



Thyroid and peri.



> Lastly, can anyone explain why my TSH 3rd. generation could be .76 on 4/22/11 and 6 months later be 8.63??



Bad batch of pills?  Or something new has changed with you..any new medications you've added in since April?


----------



## Tinker'n'Fun

Christine said:


> This is why most doctors won't even run hormone tests--they are very unreliable until you have missed a few periods.  Mine won't even do it.  I don't think you're going to find any answers on these female hormone blood tests.
> 
> 
> Thyroid
> 
> Thyroid
> 
> Thyroid
> 
> Peri (hypothyroid will not cause this)
> 
> Both
> 
> Thyroid
> 
> 
> The GERD could be giving you the phantom gallbladder pain.
> Ovaries can still hurt because a tubaligation does not affect ovaries.  You are still ovulating.
> 
> Both
> 
> 
> 
> Definitely peri (erratic hormone surges will cause this--lucky you).
> 
> 
> 
> Thyroid and peri.
> 
> 
> 
> B*ad batch of pills?  Or something new has changed with you..any new medications you've added in since April?*



Thank you SO MUCH and the poster before for taking the time. You don't know how much it means to me. I am an emotional wreck with both going on. Christine, if I could I would bill my insurance and pay you, as I think you are point on with everything!!!

For the bolded, I have gotten the pills at the same place since April, and I think they were all in the same batch as for the last 6-8 months, they have hand written an expiration date on the bottle, it was 7/12, so I know they came from the same bottle. Now were they old or ineffective, could have been since I get them from the same place each time. I am on the new dose so we will have to see what happens. I just hope it happens in a reasonable amount of time, keeping my fingers crossed.

The only new drug is Fentanyl Pain Patches. I am going to check and see if there is anything in the Internet world where anyone else had a problem. Other than that, I haven't a clue.

I'll be honest, I tend to worry. All I could think of was that something was happening where my thyroid used to be, which is absolutely silly since they left nothing. All the stuff is just bad hormone luck. The spin was against me, and now I have two out of whack. So I feel like these guys, , then 5 minutes later this guy, , followed as soon as the tears are gone by this guy, , then finished out with this guy . 

I do feel better reading what you wrote and in the course of it, I did start my cycle. So at least I can get that and deal with it. It's a doozie though with the other levels off so much. (Hopefully I can hide for a few days, don't want them to think I need to be committed!)


----------



## mrsklamc

I have been SO cranky and emotional this week (since my doseage dropped)...which totally doesn't make sense because lowering my dose should put me back closer to what "normal" people are at. I should have been all cranky and crabby at .072 and it's MUCH worse now that they are trying to get me to 04-2.00 range. I hope it evens out!


----------



## luvmarypoppins

mrsklamc said:


> I have been SO cranky and emotional this week (since my doseage dropped)...which totally doesn't make sense because lowering my dose should put me back closer to what "normal" people are at. I should have been all cranky and crabby at .072 and it's MUCH worse now that they are trying to get me to 04-2.00 range. I hope it evens out!



Sorry you are going through this. Its amazing what a bunch of hormones do to our body and emotions. What is the number your endo wants you at? I posted what mine said was ok, but I forgot. I dont know if I want her fooling around with me again too like you. I am just so tired all the time and she says she does not know why.

I guess you also have to throw in the TTC stuff in a while too, so that should make it very interesting for you and your endo.  

I would def. call and tell them your symptoms and at least have a phone consult etc. 

Christine - I havent read up on this but they are talking a lot about it on thyca. Its called the paradox of hypothyroidism?? 

Micayla - I hope you get your levels straightened out to where you are comfortable etc.  

Mine is strange too, she lowered the dose and my tsh went up from 0.2 to 0.1 and it should have went down. 

Its such a balancing act. Hang in there. Blessings to you.


----------



## angwill

mrsklamc,

I always feel a lot better the lower my TSH number is.  I feel perfect when .2 but my doctor wants it in the range the testing lab says it should be instead of what I feel best on.  So I live with it in lab range making me feel crappy.  I just get used to dealing with it.

Another thing is that at one point my TSH went up to something like 12.0 all because I started taking a multivitamin with iron in it.  As soon as I stopped taking it and started taking a multivitamin silver which did not have the iron in it my levels stabilized.  It shows that once you have been normal for a period of time if you find you are off look at everything you are doing differently.


----------



## Christine

angwill said:


> Another thing is that at one point my TSH went up to something like 12.0 all because I started taking a multivitamin with iron in it.  As soon as I stopped taking it and started taking a multivitamin silver which did not have the iron in it my levels stabilized.  It shows that once you have been normal for a period of time if you find you are off look at everything you are doing differently.



Yeah, iron interferes with thyroid hormone absorption in a big way.  I have to take my iron WELL away from the thyroid meds.  Many vitamins/minerals can intefere so they should never be taken together.

Also, I was put on birth control pills and my TSH went from 0.3 to 8.6.  I was told by my endo that he's never seen anyone's birth control interfere with the Synthroid but if you look on the internet it's a known problem.  They even upped my thyroid meds and we could not get the TSH to come down.  Funny thing was, I felt fine so they couldn't tell if I the BCPs were causing some false thyroid readings or what.  I didn't mess with it and just got off the pills and the TSH went right back to normal.


----------



## Christine

lumarypoppins-- I almost never read over at thyca anymore; however, I've never heard the formal term of "the paradox of hypothyroidism" but I do remember many years ago some participants and doctors stating that some people who are hypo can often exhibit hyper symptoms.  Is that what they mean?


----------



## kimmie

Hey everyone!

I had my surgery on Tuesday.  They did find cancer so they removed all of the thyroid, but left the parathyroid.  All of this is so new to me but anyway.

I am tired and sore but seem to be doing fine.  I will see my doctor again next week and then and endo and oncologist who will set me up for radioactive iodine.

I can't get my incision wet and really want to wash my hair.  I tried yesterday and it was a disaster! lol

So for now I am taking an antibiotic, calcium, and somekind of thyroid medication until I can get things straight with the new doctors.

Thanks for listening!

I am sure I will be back to ask some questions soon.


----------



## luvmarypoppins

Kimmie - glad your surgery is over but sorry to hear that you had to hear the news no one wants to hear

Yes, please ask any questions you want, I am sure someone here will have the right answer for you.

Focus on healing. Hoping your endo and onc. visits go well next week. 

If you are getting RAI, I would def. ask if they have access to Thyrogen. It seems in short supply around some places for sure. I would pick thyrogen hands down compared to what the others who have gone hypo have said hey had to go through. 

Make sure you like your endo too. You will be dealing with him/her alot. 

Wishing you all the best.


----------



## kimmie

Thank you!

I am trying to be patient with my healing, but I want to get "back to normal" right now! lol

I have a fear of gaining weight and depression with all of this.  I have my weight down to a comfortable size for me.

How do you keep the weight off?


----------



## Christine

kimmie said:


> Thank you!
> 
> I am trying to be patient with my healing, but I want to get "back to normal" right now! lol
> 
> I have a fear of gaining weight and depression with all of this.  I have my weight down to a comfortable size for me.
> 
> How do you keep the weight off?



The only time the thyroid stuff made me gain weight was when I had to get off my medications for 6 weeks.  I picked up about, maybe 10 lbs, but it quickly came off when I resumed my meds.  Other than that, the whole thyroidectomy and being on thyroid medication never changed my ability to gain or lose weight.  I know that is not the story for a lot of people.  I do find it hard to understand how going from your body's way of manufacturing thyroid hormones to using synthetic AND getting your TSH very low causes people to gain weight.  But it apparently happens.


----------



## kimmie

Thanks Christine.  My doctor put me on liothyronine 25 mcg (substitute for Cytomel) until next week then I will arrange to see the endo and oncologist who will put me on the dosages that are right for me.  I really do not know what my THS  or anything else is because I seemed to be in the normal range before all of this happened.
I am pretty tired and don't know if its from surgery or the fact that my thyroid is gone!

Well I am sure I will have more questions very soon....Thanks Guys!


----------



## Christine

kimmie said:


> Thanks Christine.  My doctor put me on liothyronine 25 mcg (substitute for Cytomel) until next week then I will arrange to see the endo and oncologist who will put me on the dosages that are right for me.  I really do not know what my THS  or anything else is because I seemed to be in the normal range before all of this happened.
> I am pretty tired and don't know if its from surgery or the fact that my thyroid is gone!
> 
> Well I am sure I will have more questions very soon....Thanks Guys!



My thyroid was functioning very normally also.  I did feel "odd" after the surgery.  It did take a long time for my TSH to rise (I was not given any Cytomel).  So it will take awhile for the natural thyroid hormone to leave your system.  The generic Cytomel should keep you okay for awhile.  You won't feel totally normal on it because it's just T3 and it's fairly short-acting so you can feel a little up and down on it but it's nothing awful.


----------



## kimmie

Christine said:


> My thyroid was functioning very normally also.  I did feel "odd" after the surgery.  It did take a long time for my TSH to rise (I was not given any Cytomel).  So it will take awhile for the natural thyroid hormone to leave your system.  The generic Cytomel should keep you okay for awhile.  You won't feel totally normal on it because it's just T3 and it's fairly short-acting so you can feel a little up and down on it but it's nothing awful.


I appreciate the explanation


----------



## luvmarypoppins

Well dh and I went out to dinner Friday night. My voice was bad. I think a combo of the weather, being tired, dehydrated etc.

So I go and try to order. The server says to me, oh, do you have a cold? I said um no and tried to talk etc. I saw she was putting her ear nearer to me so she could hear me.   Dh just sat there as usual and did and said nothing. So much for him being in my corner. But I shouldnt complain as he is the one who held my hand in the coma, pushed my bed to rush it down to the or etc.

Well after the server left I just started crying. Dh asked what was wrong. I guess I was upset he didnt say anything to try and help me be understood and upset as it just reminded me again that cancer sucks.

Tues. I am going to get a flu shot, b12 shot, and asking for some blood work since I am so tired, oh yes this is the dr. who failed to diagnose the cancer, lets my blood work sit on his desk for up to 5 weeks etc. I cringe when I go to this guy. I wish he would retire. A few more years maybe.  But the good drs. around here dont take my ins. so maybe I will ask the endo for a recommendation next time etc. 

Oh and a friend of dh (male like in his 50's I think, was having trouble swallowing etc. His dr. ordered a sono and they are seeing lots of nodules on the thyroid so now he is scheduled for a biopsy at Sloan Kettering in the city. I am praying it will be nothing. I told dh if it turns out into stuff then I would volunteer to do the lid stuff for him in the future. He is single and lives with his elderly parents, works and deals with his psycho brother too. So he will need our help for sure.


----------



## kimmie

luvmarypoppins!

I hope you will feel better soon!

I am seeing the endo tomorrow.  At first I was told not until December for new patients.  Are you kidding!  Anyway I talked to my ENT's nurse who called over the the Endo's nurse a magically they have a cancellation for me!  I really believe in being proactive with my healthcare.

My question is what should I ask for/about?  Will I need more bloodwork before they can put me on medications?  I feel pretty "loopey" right now.  Is it the fact that I do not have a thyroid?  Or the meds I am on?

What should be my main concerns?

Thanks everyone!


----------



## kimmie

OK I went to my endo today.  I really like her.  She was very nice in explaining what will happen over the next 4 weeks without any medication.   I will have the RAI in about 4 weeks and depending on how much I will be given, I may just go home or stay 1 night in the hospital.  I am not looking forward to the next 4 weeks.  

Does anyone have any remedies or foods or things that will help me to stay upbeat?  I want to eat healthy and try to limit the tiredness....anyone?


----------



## Christine

kimmie said:


> OK I went to my endo today.  I really like her.  She was very nice in explaining what will happen over the next 4 weeks without any medication.   I will have the RAI in about 4 weeks and depending on how much I will be given, I may just go home or stay 1 night in the hospital.  I am not looking forward to the next 4 weeks.
> 
> Does anyone have any remedies or foods or things that will help me to stay upbeat?  I want to eat healthy and try to limit the tiredness....anyone?



Try to limit junk food while off meds.  Hard to do but that's only going to slow you down.  Eat things that are easily digestible as your digestive tract may slow down toward the end.

Also, did your endo discuss doing the Low Iodine diet 2 weeks prior to RAI treatment?  It optimizes RAI uptake in residual tissue.


----------



## mrsklamc

Kimmie-

I can't say much for limiting the tiredness. I didn't find a good way to do it. I got kind of sad, too...the second time I had to go hypo we got seasons of comedy shows- I was 'loopy' as well and watched "My Name is Earl" which is not something I would usually watch AT ALL. I also watched stand up comedians. Probably sounds kinda lame but for me it was a distraction, kept my mind off not being able to leave the house and being home by myself all day, etc.

Honestly I didn't worry about eating healthy, my options were so limited I ate whatever we could think of that I wanted - the first time was harder because I hadn't figured out all of what was OK and what wasn't. For example, the red dye they mention, I think it's #3- well, it's been illegal in the United States for ages,but I didn't know that so I avoided pretty much anything w/ artificial color. I also misread that I couldn't have any eggs at all, when it's actually just avoid the yolks. I also second what Christine said about your system slowing down- which was bad because I was eating natural peanut butter a lot. I suggest dried apricots or prunes if you can stomach them. I actually like them but I know some don't.


----------



## kimmie

The only thing she mentioned was not to eat seafood which can contain iodine.  Other than that I don't have any restrictions.  I am waiting to hear from the radiation doctor so...maybe he will tell me what to avoid.  I already have issues with constipation so I am trying to get metamucil and activia in my diet now.  As for vitamins I am only taking D3.  I will ask about multivitamins minus iron?

I am going to my ENT this morning and maybe he can shed some light on a diet, but as of now the Endo did not say to stay away from anything but seafood.


----------



## mrsklamc

The detailed low iodine diet can be found at thyca.org.... I find it odd that she only mentioned seafood, but I am no doctor...


----------



## kimmie

mrsklamc said:


> The detailed low iodine diet can be found at thyca.org.... I find it odd that she only mentioned seafood, but I am no doctor...



I agree!  Maybe the radiation department will contact me with specific details.


----------



## luvmarypoppins

kimmie said:


> I agree!  Maybe the radiation department will contact me with specific details.



kimmie - glad you liked your endo. Hope your ENT visit goes well today.

I would seriously question the diet instructions you were given. If you want to give the RAI the best chance of being effective, then you definetly need to do the LID diet for 2 weeks.

My advice - pig out on everything you love right now before you start the diet. That way it wont be so hard when you have to do it etc. If there are any remaining summer type fruits and vegs. you like that are fresh, you might want to pick some up now and freeze them, since they are a big part of the diet etc.

Also I guess you could ask the radiation are you getting a pill or liquid RAI. My radiation oncologist believes in giving an anti emetic pill before swallowing the rai pill because she said once someone actually threw up the rai pill.

I stayed in the hospital overnight when I got the RAI. That was my choice. My rad. onc. says most people dont do that. But I had the highest dose , 200, and plus I was dealing with a draining stomach wound from another surgery after the TT.   

Actually I am glad I stayed overnight. My dh deals with radiation at work and he says its the best place to be etc.   

Guess it also depends if you have young kids, pets, family etc. Take that into consideration, if you live very far from the radiation place etc.

During the diet its over the 2 weeks that most people average losing 10 lbs. First time I did the diet I lost 20 and the 2nd time I lost 10.

My rad. onc. has her own diet I had to follow, its a combination of the lid, nih and her own not to have stuff etc.

Sorry you have to go hypo and not get the thyrogen. Guess I am blessed. My rad. onc. is the 6th largest user in the US she said.

You will get through all this, one step at a time and we are all here to help you too. Hang in there. Wishing you all the best.


----------



## kimmie

Thank You luvmarypoppins!

I am sure I will get a call from the radiation dept about the appointment and I would guess the 2 week diet.  I did go to the thyca.org site and looked at the diet.  I am bummed about some of the foods to eliminate, but oh well.  I want the best recovery I can have, so I need to be really good. lol
My endo said it would be up to radiology as to whether they would keep me overnight or not, she said it depends on the amount given etc.  We do not have small kids at home but we do have a small dog!  I think maybe staying overnight would maybe be best.  I have 2 girls and a husband to worry about exposing.

I am going to go look again at the foods I could have and its a good idea to pick some up and freeze them!

What are some of your favorite things that you all just loved eating while on the lid diet?


----------



## mrsklamc

I was very different each time I did the diet. The first time I had lots of 'lunch in foil' (in the LID cookbook)...DH made me spaghetti....homemade salsa and salt free organic chips from Trader Joes. Also, we bought an ice cream freezer and DH made me strawberry sorbet and no bake cookies. LMP's dietitian allowed raspberry sorbet by Haggen Das (sp?) though. Oh and after the last dose of radiation I was so sick and my friend made me chicken noodle soup from scratch from a chicken she bought at whole foods. Meant so much, it was the only thing I could eat after the 200 dose of RAI. (I'm sure yours will be lower, mine had spread to lymph nodes) 

This last time we made cinnamon pull apart rolls from the LID cookbook and many days I ate those with some salt free PB and jelly. I also had celery with the salt free PB and craisins...for some reason the last week that really got me through. DH grilled burgers on the grill for me, too, I would eat them with salt free ketchup made my heinz- I stirred iodine free salt into the ketchup because with no salt it tasted terrible.


----------



## kimmie

mrsklamc said:


> I was very different each time I did the diet. The first time I had lots of 'lunch in foil' (in the LID cookbook)...DH made me spaghetti....homemade salsa and salt free organic chips from Trader Joes. Also, we bought an ice cream freezer and DH made me strawberry sorbet and no bake cookies. LMP's dietitian allowed raspberry sorbet by Haggen Das (sp?) though. Oh and after the last dose of radiation I was so sick and my friend made me chicken noodle soup from scratch from a chicken she bought at whole foods. Meant so much, it was the only thing I could eat after the 200 dose of RAI. (I'm sure yours will be lower, mine had spread to lymph nodes)
> 
> This last time we made cinnamon pull apart rolls from the LID cookbook and many days I ate those with some salt free PB and jelly. I also had celery with the salt free PB and craisins...for some reason the last week that really got me through. DH grilled burgers on the grill for me, too, I would eat them with salt free ketchup made my heinz- I stirred iodine free salt into the ketchup because with no salt it tasted terrible.



Thank You for the ideas!


----------



## luvmarypoppins

Here was my diet stuff

I pigged out on everything I coudnt have before the diet, especially dairy.

Breakfast: I hate oatmeal but I did make a batch in the crockpot from a recipe that was on the budget board here. Only used the steel cut oats as they cook better they say. I think I used Silver Palate. Only thing that helped me was putting pure maple syrup on it and pecans. I also cooked it with the apples and cinnamon. Just heated it up when I wanted some more.

I usually just ate a banana. 

Lunch - Usually salad with a grilled chicken breast or I alternated that with what Micayla said about the lunch in foil, or I made some stew and used that too. Also did a lid type soup. At the end I was so sick of salad the last few days I think I just had peanut butter and vegetables. You need to mix it up and put it in the refrig, since its natural the oil will seperate etc.

Dinner - Here is where I mixed it up. I always went with color on the plate and not the same stuff etc, so

Meats: Chicken,beef or pork, only fresh

Starches - Basmati rice, I just made a bowl to use during the week
Fresh sweet potatoes, red potatoes, just pulled off the skins after cooking.
No Yolk Egg noodles

Birdseye Steamfresh NON SAUCED vegetables are fine. Alot of store brands use salt, so they are a no go. You must read all labels before purchasing.

Snacks - all nuts, walnut,pecans, and almonds, you can pop popcorn in the microwave in a brown bag. I think es gave me that one from posting here and I bought mini packs of raisins, craisins etc, just to feel like I was special.
Unsalted matzoh, I live in NY, very easy to get here. 

By the end of the second week I was tired of cooking 2 seperate meals for my family. I would have my dh and the 3ds eat by themselves in the kitchen. I would usually eat myself before. I didnt want to feel like I was missing out on stuff.

I also bought gingerale in those little bottles, like a "treat" for me and then the sorbet. I think edys brand has raspberry and hagen das has mango and peach? l also I got martinellis PURE apple juice, expensive.

I didnt cook but if I did some stuff on the lid I would like the homemade aplesauce and banana bread. I know the lid says cocoa powder but I was not allowed to have that, see my drs. own rules etc. Chrstine donated her wacky cake recipe to the lid cookbook so if you can make it thank her!

I made a stew with onions, vegs. etc. That was l lbs. of stew meat, so you have to divide the meat for 4 meals, only 4 ounces each. Some diets will let you have 6 ounces.

I also had to only have distilled water too. sigh.

I made a chicken breast with orange marmalade on top, basmati rice and birdseye steamfresh sugar snap peas, close to chinese as I could get etc.

Mock spaghetti stuff - no yolk egg noodles, a hamburger pattie and onion,tomatoes and peppers. I know some diets say you can have pasta but mine said only very little so I just stuck with the no yolk.

If you are going hypo you might want to cook some stuff now. Ask Micayla, she went that route the lst time. I would makel soup and applesauce now etc. freeze it. My dh is not a cook and I didnt want to ask people from my church because I had them do meals twice for me, once after the tt and then when I had the bowel obstruction before the rai. So I got through it, ptl. You will too, Hang in there. I am sure it seems pretty overwhelming, but its really doable. 

As Micayla said, Trader Joes might have stuff, you have to read the labels.


----------



## Christine

kimmie,

Even if your rad department doesn't recommend the diet, you should probably do it.  Most endos/radiologists are on board with it these days and it just makes sense, can't hurt you, and can only help.

It's a real drag though....


----------



## Tinker'n'Fun

I always feel like I am whining when I post because I am no where near where the most of you are.

I started my new levels but I am still having a hard time with the exhaustion and sleeping. Enough so that I have been benched from driving, showering, and exercising alone. I never know when I am going to fall asleep and it comes on so quickly. DH has put a harness on the couch now so when I fall asleep the laptop does not fall to the ground. I am grateful for that as I would be lost without it. It has been just about a week or so on the new dose. I have had a few days with hours of "good" time, and have pushed myself to make dinners each night, have pushed the laundry through and am back to making lunches for my boys. Now this would seem normal for most, but it was a long hard road just to get to this point.

Last night while heating up dinner, I made some pumpkin bread for the family to share. Funny how something so simple made me feel useful. I am still quite worried as to how far along I will be for our trip in December. I can only hope for the best.

I keep you all in my prayers and I am keeping Kimmie's recovery close and near that it gets better each day.


----------



## kimmie

luvmarypoppins said:


> Here was my diet stuff
> 
> I pigged out on everything I coudnt have before the diet, especially dairy.
> 
> Breakfast: I hate oatmeal but I did make a batch in the crockpot from a recipe that was on the budget board here. Only used the steel cut oats as they cook better they say. I think I used Silver Palate. Only thing that helped me was putting pure maple syrup on it and pecans. I also cooked it with the apples and cinnamon. Just heated it up when I wanted some more.
> 
> I usually just ate a banana.
> 
> Lunch - Usually salad with a grilled chicken breast or I alternated that with what Micayla said about the lunch in foil, or I made some stew and used that too. Also did a lid type soup. At the end I was so sick of salad the last few days I think I just had peanut butter and vegetables. You need to mix it up and put it in the refrig, since its natural the oil will seperate etc.
> 
> Dinner - Here is where I mixed it up. I always went with color on the plate and not the same stuff etc, so
> 
> Meats: Chicken,beef or pork, only fresh
> 
> Starches - Basmati rice, I just made a bowl to use during the week
> Fresh sweet potatoes, red potatoes, just pulled off the skins after cooking.
> No Yolk Egg noodles
> 
> Birdseye Steamfresh NON SAUCED vegetables are fine. Alot of store brands use salt, so they are a no go. You must read all labels before purchasing.
> 
> Snacks - all nuts, walnut,pecans, and almonds, you can pop popcorn in the microwave in a brown bag. I think es gave me that one from posting here and I bought mini packs of raisins, craisins etc, just to feel like I was special.
> Unsalted matzoh, I live in NY, very easy to get here.
> 
> By the end of the second week I was tired of cooking 2 seperate meals for my family. I would have my dh and the 3ds eat by themselves in the kitchen. I would usually eat myself before. I didnt want to feel like I was missing out on stuff.
> 
> I also bought gingerale in those little bottles, like a "treat" for me and then the sorbet. I think edys brand has raspberry and hagen das has mango and peach? l also I got martinellis PURE apple juice, expensive.
> 
> I didnt cook but if I did some stuff on the lid I would like the homemade aplesauce and banana bread. I know the lid says cocoa powder but I was not allowed to have that, see my drs. own rules etc. Chrstine donated her wacky cake recipe to the lid cookbook so if you can make it thank her!
> 
> I made a stew with onions, vegs. etc. That was l lbs. of stew meat, so you have to divide the meat for 4 meals, only 4 ounces each. Some diets will let you have 6 ounces.
> 
> I also had to only have distilled water too. sigh.
> 
> I made a chicken breast with orange marmalade on top, basmati rice and birdseye steamfresh sugar snap peas, close to chinese as I could get etc.
> 
> Mock spaghetti stuff - no yolk egg noodles, a hamburger pattie and onion,tomatoes and peppers. I know some diets say you can have pasta but mine said only very little so I just stuck with the no yolk.
> 
> If you are going hypo you might want to cook some stuff now. Ask Micayla, she went that route the lst time. I would makel soup and applesauce now etc. freeze it. My dh is not a cook and I didnt want to ask people from my church because I had them do meals twice for me, once after the tt and then when I had the bowel obstruction before the rai. So I got through it, ptl. You will too, Hang in there. I am sure it seems pretty overwhelming, but its really doable.
> 
> As Micayla said, Trader Joes might have stuff, you have to read the labels.



Thanks!  I will keep reviewing this page for ideas.  It does seem overwhelming right now.

christine you are right!  I have an appt with radiology next week so I will get some answers.  Like you said I will probably just do the diet anyway.  I need to be sure any microscopic cancer left behind is zapped!


----------



## mrsklamc

Tinker'n'Fun said:


> I always feel like I am whining when I post because I am no where near where the most of you are.



Don't feel bad at all. It's miserable for your hormones to be off.


----------



## luvmarypoppins

Tinker'n'Fun said:


> I always feel like I am whining when I post because I am no where near where the most of you are.
> 
> I started my new levels but I am still having a hard time with the exhaustion and sleeping. Enough so that I have been benched from driving, showering, and exercising alone. I never know when I am going to fall asleep and it comes on so quickly. DH has put a harness on the couch now so when I fall asleep the laptop does not fall to the ground. I am grateful for that as I would be lost without it. It has been just about a week or so on the new dose. I have had a few days with hours of "good" time, and have pushed myself to make dinners each night, have pushed the laundry through and am back to making lunches for my boys. Now this would seem normal for most, but it was a long hard road just to get to this point.
> 
> Last night while heating up dinner, I made some pumpkin bread for the family to share. Funny how something so simple made me feel useful. I am still quite worried as to how far along I will be for our trip in December. I can only hope for the best.
> 
> I keep you all in my prayers and I am keeping Kimmie's recovery close and near that it gets better each day.




Sorry you are so tired, I am so tired myself and I feel like you, just pushing to do stuff. I asked my endo and she does not know why too and tues. I went to my gp and asked him to do a whole bunch of blood tests. I am having those in 3 weeks. It does take a while for the new dose to take effect, so hang in there. At least you have a great Disney trip to look forward too. We are going Nov. 29-Dec.4. 

Hang in there. It will slowly get better.


----------



## luvmarypoppins

Well I am done with the dr. and dentist  this week.
Tues. as I posted, went to the gp, got a flu shot, b12 shot and asked him for scripts for the blood tests and mammogram. Covering all my bases.

Then I went to the dentist yest. Anyone have dental problems.? my teeth/mouth etc. def. got worse since the radiation. This time he fixed a tooth that chipped off a little just when I was eating a sand.

So in the last month I had the 6 needles in my eyes, 2 shots, 2 dental injections, and in 3 weeks I need another blood test to check the b12 level too and do the blood work oh and then...

Finally Nov. 7th I am getting that reclast infusion for the osteoporosis. I asked my endo and she told me no one ever got the severe bone pain. I read you can get it weeks later, well I better not because I will be in Disney. I am taking my stash of post op painkillers just in case.

I am so sick and tired of needles lately. sigh.


----------



## 3prettyprincesses

Hello!  I'm new here.  I've had Hashimoto's for the last six years and been on levoxyl all that time.  I have swung from hyper to hypo and back so much so that I feel like a human yo-yo.  I hate it!  

Currently, I am on 112mg of levoxyl and feeling slightly hyper again (insomnia, fatigue, anxiety and um, well, diarrhea).  My dr. is convinced that my levels as of this past Sept. are picture perfect:

TSH:  1.3  (range of .4 - 4.5)
Free T4:  1.3  (range of .8 - 1.8)
Free T3:  2.3  (range of 2.3 - 4.2)

This past May I was very hyper (TSH .1) and miserable so he lowered my dose from 137 to my current dose of 112.  

I also learned a year ago that I have celiac disease as well which apparently is linked to autoimmune disorders (like Hashimoto's).  

Any advice?  I'm feeling pretty frustrated and weepy lately!  This rollercoaster ride is one I'd like to get off of, lol!  Thanks!


----------



## kimmie

OK so the endo nurse calls to tell me my thyroglobulin is at 27 and it needs to be at 2.  What?

Is this for the RAI!?  She is calling me back once she talks to the doctor.  I thought I would see the radiologist next week and then they would schedule the RAI for a few weeks after that, and then follow up with endo on December... I am a bit confused

Anyone?


----------



## Christine

kimmie said:


> OK so the endo nurse calls to tell me my thyroglobulin is at 27 and it needs to be at 2.  What?
> 
> Is this for the RAI!?  She is calling me back once she talks to the doctor.  I thought I would see the radiologist next week and then they would schedule the RAI for a few weeks after that, and then follow up with endo on December... I am a bit confused
> 
> Anyone?



Thyroglobulin is something thyroid cells produce.  Specifically thyroid cancer but normal cells produce it too which is why monitoring you for thyroid cancer is very difficult if you don't have all your thyroid removed.

So basically the number 27 is telling you that even after your surgery, you still have thyroid in your neck and it is working and producing stuff.  

After thyroid surgery and eventual RAI treatment you actually want your thyroglobulin levels to be "undetectable."  That means there are no thyroid cells (good or bad) left in your body.  They will measure your thyroglobulin levels every 6 months for the rest of your life.  If that number starts to increase, that will mean that you are having a recurrence.

Do not be alarmed that your number is 27 at this point.  That's pretty normal after surgery and before RAI.  The RAI will take care of that 27.


----------



## kimmie

Thanks Christine!  That makes me feel better.  I thought that the number 27 would prevent or delay getting the RAI.

I can't thank you all enough for your help!


----------



## Christine

kimmie said:


> Thanks Christine!  That makes me feel better.  I thought that the number 27 would prevent or delay getting the RAI.
> 
> I can't thank you all enough for your help!



The only thing that might delay RAI is your TSH level.  I think they like it to be a minimum of 40 before treatment (that shows your truly hypothyroid).  My radiation specialist likes to see it really high--ideally between 80 and 100.  The higher the TSH the more "hungry" the remaining thyroid cells are for iodine.


----------



## kimmie

Christine said:


> The only thing that might delay RAI is your TSH level.  I think they like it to be a minimum of 40 before treatment (that shows your truly hypothyroid).  My radiation specialist likes to see it really high--ideally between 80 and 100.  The higher the TSH the more "hungry" the remaining thyroid cells are for iodine.



Thanks!  Not sure what my level is....find out on Thursday...


----------



## kimmie

Ok.  I met with the radiology onc.  Very nice man who explained a lot about the process.  He told me not to worry about the diet.  He will be giving me a pretty high dose of RAI and I will be staying in the hospital overnight/maybe two nights (I hope not, but whatever).  He took blood to see where my TSH is and they will call with results in the morning.  I will need bloodwork once a week until my level is atleast 50 or so.  I will have a scan and then RAI.I think I have more thyroid left than maybe other people because I am tired, but not too bad.  I am kinda crabby though!

I hope I am making sense.

PS I think I will try to follow the lid diet somewhat.  He said if I want to I can but don't knock yourself I and drive yourself crazy over it. 

All I know is I want all the bad stuff out!


----------



## luvmarypoppins

kimmie - did you ask what he meant by a "high" dosage. The highest at once is 200 and Micayla and I both had that. It threw me for a loop.

Getting on my soapbox here and saying you should definetly FOLLOW the lid to a tee. I did and then some. My hosp. even provides a dietician that you can call anytime during the diet and consults with you before the diet too. I didnt know that my ins. wasnt paying for it but it was the best $112 bucks I ever spent. I think that is why I am doing so well especially since mine is so rare and aggressive.

I stayed in the hospital overnight. They will let you come home after you are gieger countered at the safe level. Dont let the room scare you, its covered in plastic wrap EVERYWHERE, event he toilet seat. I had a big blue bucket with lid in my room to dispose of everythiing. I watched a lot of tv and drank tons of water. boring,. The nurses came in real quick mostly taking the blood pressure with disposable stethescopes and booties and rubber gloves I think and disposable thermometers. All meals were on cardboard and it was nice not to have to cook my own lid food for a day. I also had a draining stomach wound at the time so I think they came in to change that bandage twice too. 

They told me to just go put on my clothes and walk out but dont get on the elevator with any kids.


----------



## luvmarypoppins

And in the what next dept from me. Definetly TMI to come...after the thyroidectomy which put me into early menopause, yeah, now comes lots of cramping and slight stuff, so I called a gyn. Explained stuff to the scheduler.

She wants records. I tell them go look it up online and they can read all about it, hmm, guess they can start with the coma and my near death experience. That is why I picked someone at the univ. and not locally here. This lady will be able to ask any of my other surgeons or the endo anything she wants. 

So now I am going to that dr. but not until Nov. 14 unless they have a cancellation. It will be interesting to see what is happening. And I dont want to hear the C word again for sure. Just hope its something normal etc. because we are getting on a plane and going to Disney Nov. 28th and I dont want to cancel it.


----------



## kimmie

luvmarypoppins said:


> kimmie - did you ask what he meant by a "high" dosage. The highest at once is 200 and Micayla and I both had that. It threw me for a loop.
> 
> Getting on my soapbox here and saying you should definetly FOLLOW the lid to a tee. I did and then some. My hosp. even provides a dietician that you can call anytime during the diet and consults with you before the diet too. I didnt know that my ins. wasnt paying for it but it was the best $112 bucks I ever spent. I think that is why I am doing so well especially since mine is so rare and aggressive.
> 
> I stayed in the hospital overnight. They will let you come home after you are gieger countered at the safe level. Dont let the room scare you, its covered in plastic wrap EVERYWHERE, event he toilet seat. I had a big blue bucket with lid in my room to dispose of everythiing. I watched a lot of tv and drank tons of water. boring,. The nurses came in real quick mostly taking the blood pressure with disposable stethescopes and booties and rubber gloves I think and disposable thermometers. All meals were on cardboard and it was nice not to have to cook my own lid food for a day. I also had a draining stomach wound at the time so I think they came in to change that bandage twice too.
> 
> They told me to just go put on my clothes and walk out but dont get on the elevator with any kids.



No he did not tell me how high the dose would be.  I am going for a scan on Tuesday to see how much tissue is left and some more TSH level check.  Then he will let me know that afternoon what exactly will happen and how long I have to wait. (He wants my TSH level between 50 and 80 before he will do the RAI).  
You bet I will be following the lid diet as soon as he tells me its a go.  I am already cutting things out right now.  I am very aware of what I am eating so the RAI will be as successful as possible.

Thanks guys!   I can't tell you all how much it means to me to have you all here!


----------



## kimmie

luvmarypoppins said:


> And in the what next dept from me. Definetly TMI to come...after the thyroidectomy which put me into early menopause, yeah, now comes lots of cramping and slight stuff, so I called a gyn. Explained stuff to the scheduler.
> 
> She wants records. I tell them go look it up online and they can read all about it, hmm, guess they can start with the coma and my near death experience. That is why I picked someone at the univ. and not locally here. This lady will be able to ask any of my other surgeons or the endo anything she wants.
> 
> 
> So now I am going to that dr. but not until Nov. 14 unless they have a cancellation. It will be interesting to see what is happening. And I dont want to hear the C word again for sure. Just hope its something normal etc. because we are getting on a plane and going to Disney Nov. 28th and I dont want to cancel it.



Fingers crossed that you will be at Disney!


----------



## luvmarypoppins

kimmie - just wondering how your scan went. Hope your levels are rising too.

Monday I am going for the reclast infusion. I sure hope this helps my bones. I am hoping the endo is there then too so I could run my gyn symptoms by her and see what she thinks etc. 

The symptoms have mostly gone away but I am still keeping the appt.I also lost or I should misplaced my next blood work and sono script that is for Jan. so I will get another one etc.


----------



## kimmie

Hi luvmarypoppins!

My scan was ok.  As he suspected, I have thyroid leftso I am having RAI next Tuesday.  My levels this week were at 50.  Last week it was 25.  So I am sure next week it will be higher yet.  I am really starting to feel it too!

I have been doing the lid diet this week.  It isn't all that difficult for me since I eat many of these foods anyway.  I just have to watch out for the dairy, bread and chips! lol
I have put on some weight which is driving me crazy.  I can't stand it right now, but I know it will come off as soon as I can get on some meds!

I have my birthday coming up next Saturday and will not be doing any celebrating for sure. (I did have the option to wait one more week, but I want to feel better as soon as possible.  I wouldn't be much fun anyway!)

My Mom sent me a 500 piece puzzle!  

I am trying to think of things (disposable) that I can get for myself beforehand.

Anyone have ideas?  
disposable cups, plates, utensils

I did ask about toothbrush and things at the hospital.

What did you bring with you?  Did you bring shower stuff?  Hairdryer?

I am sure I will have more questions before Tuesday!

Thanks so much!


----------



## luvmarypoppins

I actually brought nothing with me to the hospital but the clothes on my back.

I didnt get into the room and get the pill until after 8 pm and all I did was just watch tv the whole time etc.

My dh came the next morning to say hi. He was so stupid and opened the door. I was screaming get out etc. He says, its ok etc. I guess he doesnt care as he has worked with the radiation from his job etc. It bothered me.

I actually didnt take a shower due to the fact that I had the draining wound so if I got that wet them they would have to come in more etc. which was not good and I couldnt change it myself.  They didnt tell me to take a shower I think because they knew the wound issues.

I have read on thyca. that some girl took like 3 showers.

Dont bring anything with you that much or it will have to be geiiger counted before you leave and if not acceptable will have to be disposed of etc.

I am sure they told you to bring the sour lemon drops. I didnt use them that much. they made me sick themselves. I wish I had Jolly Ranchers instead, at least it would have been more of a flavor variety.

At home I was told absolutely no disposable stuff or it would have to be held for months etc.  I was told to have 1 plate, cup and bowl and utensils etc. and to wash them away from my family after each meal. I did it in the bathroom sink.

No prepping or touching food for a week and if you touch a tv controller, computer keyboard etc. that is shared then wear disposable rubber gloves and no walking around with bare feet etc.

I must admit based on what everything else that everyone else did, my rad. onc. and hosp. is a bit overboard on all the precautions, but I would rather be that way. My dh figures all the radiation out mathematically etc. so he would always comment to me etc. 

Sorry you have to go through this on your birthday. Wishing you all the best. Did they tell you the dose yet. I think 150 is standard and bearable. Anything more and you might not be feeling so great etc.


----------



## kimmie

I just got back from Walmart!  I bought Lemonheads and Jolly Ranchers!

I did talk to the physicist this morning.  I had lots of questions.  He was so nice.  He told me to have disposable cups and plates and remove them from the house myself.  I cannot prepare food for others, must sit 6 feet from loved ones, obviously not share anything of mine with anyone else.  He explained about the half life every 60 days and who would be in danger from long term exposure.  My hair dryer is junk anyway, so if I have to leave it good riddens! lol

I was thinking of packing like a bag lady.  I just have to have clean hair!

I got a mask from the paint dept. and those throw away painting gloves just in case.

He did mention a few times about saliva more than sweat.  I guess it is more concentrated.  He thought I had a pretty good handle on what I need to do, so I should not worry.

I am looking at it as a adventure in isolation!!  Can I stand myself.....

We shall see!

Forgot to add I am getting 100!  Just enough to keep me for 24 hours.


----------



## Christine

kimmie said:
			
		

> I just got back from Walmart!  I bought Lemonheads and Jolly Ranchers!



kimmie,

You should read this.  It is from Dr. Kenneth Ain, one of the leading thyroid cancer specialists in the U.S.  They have long advised not to use candies after treatment:





> RAI and salivary stimulants (after)
> The ONLY reasonably-performed study documented the worsening of salivary dysfunction consequent to using lemon candies to stimulate salivary flow during the first 24 hours of radioactive iodine therapy. On the other hand, AFTER 24 hours there is such a severe decrease of the level of radioactive iodine in the circulating blood, that the need for further treatments (of any sort) for the salivary glands is essentially moot. For that reason, I do not advocate ANY use of salivary stimulants at ANY time during or after radioactive iodine therapy. This differs from the recommendations of the study's authors who state that they might suggest use of lemon candy after 24 hours from the I-131 treatment.
> 
> The abstract for the study is: Nakada, K., T. Ishibashi, et al. (2005). "Does lemon candy decrease salivary gland damage after radioiodine therapy for thyroid cancer?" J Nucl Med 46(2): 261-6. Salivary gland dysfunction is one of the common side effects of high-dose radioiodine therapy for thyroid cancer. The purpose of this study was to determine whether an early start of sucking lemon candy decreases salivary gland injury after radioiodine therapy. METHODS: The incidence of the side effects of radioiodine therapy on the salivary glands was prospectively and longitudinally investigated in 2 groups of patients with postsurgical differentiated thyroid cancer with varying regimens for sucking lemon candy. From August 1999 to October 2000, 116 consecutive patients were asked to suck 1 or 2 lemon candies every 2-3 h in the daytime of the first 5 d after radioiodine therapy (group A). Lemon candy sucking was started within 1 h after radioiodine ingestion. From November 2000 to June 2002, 139 consecutive patients (group B) were asked to suck lemon candies in a manner similar to that of group A. In the group B, lemon candies were withheld until 24 h after the ingestion of radioiodine. Patients with salivary gland disorders, diabetes, collagen tissue diseases, or a previous history of radioiodine therapy or external irradiation to the neck were excluded.
> 
> Thus, 105 patients in group A and 125 patients in group B were available for analysis. There were no statistical differences in the mean age (55.2 y vs. 58.5 y), average levels of serum free thyroxine (l-3,5,3',5'-tetraiodothyronine) (0.40 ng/dL vs. 0.47 ng/dL), and the mean dose of (131) I administered (3.96 GBq vs. 3.87 GBq) between the 2 groups. The onset of salivary side effects was monitored during hospital admission and regular follow-up on the basis of interviews with patients, a visual analog scale, and salivary gland scintigraphy using (99m)Tc-pertechnetate. When a patient showed a persistent (>4 mo) dry mouth associated with a nonfunctioning pattern on salivary gland scintigraphy, a diagnosis of xerostomia was established. RESULTS: The incidences of sialoadenitis, hypogeusia or taste loss, and dry mouth with or without repeated sialadenitis in group A versus group B were 63.8% versus 36.8% (P < 0.001), 39.0% versus 25.6% (P < 0.01), and 23.8% versus 11.2% (P < 0.005), respectively. Permanent xerostomia occurred in 15 patients in group A (14.3%) and 7 patients in group B (5.6%) (P < 0.05). In both groups, bilateral involvement of the parotid gland was the most frequently seen and was followed by bilateral involvement of the submandibular gland. *CONCLUSION: An early start of sucking lemon candy may induce a significant increase in salivary gland damage. Lemon candy should not be given until 24 h after radioiodine therapy.
> ThyroidCancerHelp, November, 2007*RAI and sour candy (dont use)
> The facts are this: the only reasonably-performed clinical trial of salivary stimulants demonstrated that sour candies *severely worsen salivary damage from radioactive iodine.** Additionally, enhanced liquid consumption during radioactive iodine therapy will demonstrably diminish the benefits of radioactive iodine and put one at risk for dilutional hyponatremia, based on classic radiobiology and physiology. *There is no doubt that these concepts are not understood or affirmed by some physicians; however, they're just mostly wrong or ignorant. Medical/biological reality is not subject to alteration by polling or voting. Much of the information on the ThyCa website was originally provided by me, but much has been altered and that of some other contributors is not correct.
> ThyroidCancerHelp, November, 2007


----------



## luvmarypoppins

Thanks for that insight Christine.

I really didnt eat the lemon candy that much either, It was making me nauseous but my salivary glands are really damaged anyway probably due to the high dose.

Just curious:  Is there an article about the tear duct damage, since mine of course are damaged and I have to have the surgery etc. 

And after my upcoming infusions, dr. visits etc, it will be interesting to see what they say about my issues and relationship to the thy ca.


----------



## kimmie

Christine said:


> kimmie,
> 
> You should read this.  It is from Dr. Kenneth Ain, one of the leading thyroid cancer specialists in the U.S.  They have long advised not to use candies after treatment:



OK Christine...Your just no fun....

Seriously I will leave the candy at home


----------



## luvmarypoppins

Well think of it as a post Halloween treat


----------



## kimmie

luvmarypoppins said:


> Well think of it as a post Halloween treat


----------



## Christine

luvmarypoppins said:


> Thanks for that insight Christine.
> 
> I really didnt eat the lemon candy that much either, It was making me nauseous but my salivary glands are really damaged anyway probably due to the high dose.
> 
> Just curious:  Is there an article about the tear duct damage, since mine of course are damaged and I have to have the surgery etc.
> 
> And after my upcoming infusions, dr. visits etc, it will be interesting to see what they say about my issues and relationship to the thy ca.



I went nuts on the lemon drops my first RAI treatment and did get some salivary gland damage.  Fortunately it was temporary.  I also had a blood sugar crisis in the hospital which they suspect was due to be severely hypothyroid and eating too many candies.  Second treatement I did nothing but eat some grapes every hour or so which sort of "gently" got my salivary gland to excrete.  Probably didn't even need that seeing that study.

Yes, there is an article on the tear duct gland damage.  I'll have go back tonight and find it (shhhh, I'm at work now) but it was brief and basically described your issue.


----------



## mrsklamc

My first treatment I was determined to follow instructions to the letter, went nuts on the lemon drops and got salivary damage. I didn't do it the second time and had no damage, even though my dose was much higher (and I do have dry mouth.)


----------



## Christine

mrsklamc said:


> My first treatment I was determined to follow instructions to the letter, went nuts on the lemon drops and got salivary damage. I didn't do it the second time and had no damage, even though my dose was much higher (and I do have dry mouth.)



Exact same situation for me.


----------



## luvmarypoppins

mrsklamc said:


> My first treatment I was determined to follow instructions to the letter, went nuts on the lemon drops and got salivary damage. I didn't do it the second time and had no damage, even though my dose was much higher (and I do have dry mouth.)



Well Micayla, that is very interesting to know, as I know that was your 200 dose. Gosh, more trouble over a bunch of candy for me

I also stil have dry mouth. I try to do ACT dental rinse and my teeth are so soft, just got one fixed that chipped.

And next years Thyca. conference is going to be in Chicago I think. Well its centrally located in the US. Of course I wish it would be more east coast etc. But considereing they only had that one 30 min. session in Dallas on all the rare variants, I just wonder what info I could get out of it. 

I am going to see if my friend in Dallas who's friend goes to MD Anderson could maybe ask a question for me etc. sometime. I feel bad asking as she has follicular that has spread to her bones and is on a morphine thing which she is supoposedly getting removed and she also had the tear duct surgery. I dont think she can have any more rai, I think she had the max or is almost at the max. I e mailed her once so I will have to see.  I guess I feel bad dumping my probelms on someone else who already has their own, KWIM?

One month from today I will be in Disney. No tests etc. for me. But I think I am suppose to get some blood test soon from the regular gp to check my B12 level among other things, I need to check the date.


----------



## mrsklamc

luvmarypoppins said:


> I also stil have dry mouth. I try to do ACT dental rinse and my teeth are so soft, just got one fixed that chipped.



My dentist gives me a prescription toothpaste now, it's called prevident and I use a version specifically for dry mouth. It seems to have helped.


----------



## Christine

luvmarypoppins said:


> Well Micayla, that is very interesting to know, as I know that was your 200 dose. Gosh, more trouble over a bunch of candy for me
> 
> I also stil have dry mouth. I try to do ACT dental rinse and my teeth are so soft, just got one fixed that chipped.
> 
> And next years Thyca. conference is going to be in Chicago I think. Well its centrally located in the US. Of course I wish it would be more east coast etc. But considereing they only had that one 30 min. session in Dallas on all the rare variants, I just wonder what info I could get out of it.
> 
> I am going to see if my friend in Dallas who's friend goes to MD Anderson could maybe ask a question for me etc. sometime. I feel bad asking as she has follicular that has spread to her bones and is on a morphine thing which she is supoposedly getting removed and she also had the tear duct surgery. I dont think she can have any more rai, I think she had the max or is almost at the max. I e mailed her once so I will have to see.  I guess I feel bad dumping my probelms on someone else who already has their own, KWIM?
> 
> One month from today I will be in Disney. No tests etc. for me. But I think I am suppose to get some blood test soon from the regular gp to check my B12 level among other things, I need to check the date.



The first one or two conferences were on the east coast (right in DC) and I went to them.  VERY, VERY informative but not sure I'd travel for one but that's just me.  From what I remember, it was very easy to put your questions to a "top doc" and that was nice, especially for folks coming from areas without good access to specialists.  I keep hoping they would have another DC one but they haven't.

Although, I've never been to Chicago and am always looking for a reason because I hear you can get some good pizza there!!!!


----------



## kimmie

OK everybody tomorrow I am going to the hospital for my RAI.  

Wish me luck!

Is there anything I am forgetting?


----------



## WDWDancer

Good Luck Kimmie - let us know how it goes, enjoy the "you" time 

I am still trying to decide on the RAI - I have gotten a couple different opinions from different doctors.  I had my labs drawn last week and am waiting on those results, a Thyroid Ultrasound and PET scanned scheduled in 2 wks...sigh...we'll see how that all goes.


----------



## kimmie

WDWDancer said:


> Good Luck Kimmie - let us know how it goes, enjoy the "you" time
> 
> I am still trying to decide on the RAI - I have gotten a couple different opinions from different doctors.  I had my labs drawn last week and am waiting on those results, a Thyroid Ultrasound and PET scanned scheduled in 2 wks...sigh...we'll see how that all goes.



Thanks WDWDancer!
Hope everything goes well for you!

I am not really an "alone" kinda girl...so I will probably drive myself crazy..


----------



## luvmarypoppins

kimmie - wishing you all the best tomm. I know you will do well. You are getting half the dose I had.

I am an alone person. I dont have a car and I dont work so I like it peaceful and quiet and my dh travels but that is getting less, but I have my 3 ds who are always in and out etc.

Just think, no cooking for you for a day, so enjoy it. I watched aot of tv. I honestly felt so nauseous that I didnt feel like doing anything, and they were always pushing the drinking water stuff to me. 

They go in and out very fast. Make sure they have booties and gloves on and that your food is on disposable stuff.

The highlinght will be when they come in to take your temp and blood pressure,  and when they geiger counter you

WDW dancer - I hope your testing will give you the answers you need to make informed decision. 

Does the PET scan have any iodine? I had it done before I had my surgery and then the rai was almost 5 months later (I had to wait due to my coma and bowel obstruction issues etc. etc.


----------



## mrsklamc

Good luck! It's really not too bad. (though I went home after both my doses so I didn't have to be cooped up in the hospital.)


----------



## kimmie

Ok everyone I am home!  It wasn't too bad, but then again I do not like being by myself too much.  I still feel a bit of a headache and upset stomach.  I have started on synthroid ((levothyroxine) 100 mcg.  I understand it will take some time for it to build up in my body?

I am trying to stay in my room as much as possible.  DH is away on business and Dd25 working and Dd17 at school/work.  I was mad this morning when I came down and no food around!  Not even coffee made for me!  Milk was gone too! GRRRRH!  Just a small meltdown!  Someone needs to go grocery shopping.  I am craving fresh fruit!!

\I am wearing latex gloves when I go downstairs and try not to touch anything, but its hard to do.

Oh well...atleast I am back on the computer.  

oh yea.. nothing really tastes good anyway!  What did it do to my tastebuds?


----------



## luvmarypoppins

kimmie - glad you are home and have survived!!. I think I would be upset with no groceries around after all you went through too., Well maybe text your one of your dds and give them a list etc.

I would feel better when my ds were at college too as I wanted to be away from them asap during that time.

I felt nauseous alot too so didnt really feel like eating alot and adding to that the radiation gastritis and diarrhea etc. 

My taste buds were not really affected. I know Micayla can comment  experiences to you. I think she had some issues post rai etc.

I felt better when I wore the gloves too and I was only on the computer when the ds were at college as the computer was in the room where they stayed most of the time away from me etc.

My dh was in the same living room with me, but we have a huge one and he was always about 10 feet away in his own chair etc. Thats where he slept too for the week. 

Wishing you all the best. You should start to feel better slowly each day.


----------



## kimmie

Yes luvmasrypoppins I am getting a list together for Dd to grocery shop.  I am just craving real fruits and veggies.  My cousin sent a honeybaked ham platter.  Oh my how fantastic!  I had fresh veggies cut up with it.  

I am having gastro issues and just feeling under the weather.  I know each day I will get stronger.

Dh will be home late tomorrow night and my birthday is Saturday so I have requested a big bowl of pasta and a cupcake!

I will be back at the radiology oncologist next Wednesday for measurements and hopefully can get back into the family again! lol


----------



## Christine

kimmie,

Glad your done!  The nausea is quite common and is due to the RAI causing irritation to the stomach lining (gastritis).  It will gradually heal on it's own but it can take a week.  My endo prescribed an Pepcid AC in the morning and a Pepcid AC in the evening as well as liquid Gaviscon during the day.  You want to keep the acid levels down while your stomach is irritated.  

I had "tongue" issues with both of my high dose (150 mci) RAI treatments.  I lost my taste and then it evolved into feeling like I had these little "cuts" all over my tongue.  I expected to see blisters all over it but when I looked at it in the mirror it was normal.  I believe I remember the taste/tongue issues lasting about 10 days.

The RAI tends to make you feel a bit tired (besides being hypo).  I remember going into the hospital and feeling pretty bad anyway (my TSH was at 140) and then the morning after the RAI I felt ten times worse.  It goes away in a few days though.

Hang in there, you're on the upside of things now.


----------



## luvmarypoppins

So did anyone see the little blerb about Sofia Vergara. I think its from Hugffngton but it was on the aol news today.

I wish she would have said a little more etc. but I guess any press thy ca gets is a step in the right direction.

Someone commented well if the thyroid cancer needs a spokesperson then I hope its you Sofia. Hmm, with what she said already, I just dont know. I know Catherine Bell also had a little article and it was really not that great too. Just she had it, yes  you can have kids etc., she was preg. with #2 at the time.

Just wishing if they say something I wish it would be not so generalized etc. Just like it was yeah I had it, yeah I am ok etc. Hmm, wish I would be ok etc.

And on the I am not ok thing, blood work tomm. Infusion on Monday. That is the reg. dr. bloodwork. I am most concerned with theB12 level and anything that indicates why I am so tired, he is not doing any thyroid stuff though.

Kimmie a little early  to you tomm. too. (Its also ds#3 b day tomm. He is gong to NYC today with some friends but has to work tomm. I might make him a cake, we shall see.


----------



## kimmie

I did not see anything about Sophia!  Wow she would be a great spokesperson for the "neck check".  I am shouting it from the rooftops in my community.

Thank you for the birthday wishes too!  I wish I could be in NYC celebrating like your son!  I have requested a big bowl of pasta and cupcake from the family but I just haven't felt like eating much and everything tastes off to me.  I feel like its morning sickness in a way and I hated that.  I am eating Tums and drinking water.  The acids aren't bad at all I think it just makes me feel better.  I am on my second day of synthroid and hoping to feel better each day. I am washing my clothes (seperate) and trying to keep busy in my room
My girls have been great.  They sit at my door and talk with me while I am on the bed.  
On top of it all my Mom is going for an angiogram on Monday.  She says she can't wait until I am better...so my cousin is going to take her. I am the only one she has nearby and I am 1 1/2hrs from her.  Life is just crazy! (well she is too)!

Thanks for listening and all the good wishes!

\Good luck luvmarypoppins!


----------



## mrsklamc

Kimmie-

My tastebuds were totally useless from about one week out from radiation until about 3 weeks out. I had to stay on the diet for a week after RAI too so it was kind of a sick joke- congrats, you can eat what you want! (you just can't taste it!)  

I did have one person tell me fish oil would help them come back sooner. I don't know if it did help or not.


----------



## luvmarypoppins

kimmie - if your dd's are away during the day you wouldnt have to stay in your room, (I was in the ilving room by myself during the day in my own chair that no one ever sits in but me etc)

 and if you have an area where you can be the required feet away from them it would be ok too.


----------



## Christine

I have seen Sofia Vergara talk about thyroid cancer in several places; however, it's never more than a passing notice.  I don't think that is her fault.  I'm sure the magazines and TV shows dictate how much she can talk about it and the probably don't want to devote too much time to it.  They just use it as a "defining moment in her life" kind of thing.  I also think she had it a long time ago--I think I remember her saying she was 19 or something and now she's pushing 40.  

I do think Catherine Bell actually was some sort of spokesperson for a bit.  But let's face it--even with the big increases in thyroid cancer cases, it is still small potatoes (and much less lethal) than something like breast cancer.  So I sort of understand why the media devotes very little time to it.  It's highly curable, even in later stages, and still deemed somewhat rare.


----------



## kimmie

luvmarypoppins said:


> kimmie - if your dd's are away during the day you wouldnt have to stay in your room, (I was in the ilving room by myself during the day in my own chair that no one ever sits in but me etc)
> 
> and if you have an area where you can be the required feet away from them it would be ok too.



I know I probably should drag myself downstairs for a "change", but maybe I am too lazy!

Its supposed to be 60 degrees here tomorrow!  Unusual for northern Illinois!

I think a trip outside tomorrow will be perfect!


----------



## luvmarypoppins

kimmie - how are you feeling today. Hope better each day and that you had a good b day too!

Well I am back from my reclast infusion. Now just waiting for the flu like symptoms and possible fever over the next few days.

Didnt know my endo was there as I was only scheduled for the infusion. She spent so much time with me. Gosh I just  that dr!. She is so sweet and always listens etc. She is changing my bp med, so we will see how that works out. I need to go for a bp check in about 2 weeks. I also ran my gyn symptoms by her and she said it was def. not normal and she would not be surprised if the dr. did a biopsy. I said, you know I really dont want to hear the word cancer again. She just looked at me. Hmm.


----------



## WDWDancer

Kimmie - Hope you are getting stronger and enjoyed that pasta and cupcake!!  

I am off to my family doctor tomorrow.  My endo called last Friday and left me a voicemail that my TSH came back at 37.4 (a little higher then she wanted) and we needed to push my Synthroid dosage up, do bloodwork in 6 wks.  I called her office and couldn't get past the front desk telling me oh yes make an appointment after the ultrasound, pet, and bloodwork is done you don't need to see her for 6 wks!!  

So since the Endo won't release my bloodwork to me I have to have them fax it to the family doctor who won't hand it over unless I have an appointment....not sure how he will be able to answer my questions but we'll see.  Its so frustrating I feel like there must be an easier way but I'm to exhausted to think of one! lol

Did any of you have an unusually high TSH after surgery?  I was in the 1's before surgery and I didn't come off my medication after....I'm tempted to demand RAI since my TSH is almost at the "acceptable" level!

Thanks for letting me vent - hope you're all doing well


----------



## luvmarypoppins

wdw dancer - I honestly dont remember what my number was, my one original tumor was 12.5 cm and then the secondary tumor on the L side of my neck was 4 or 5 cm.

I know my first follow up showed the remnant. My cancer was really extensive so I knew there was no way I would not have rai and I knew the surgeon could not get all of it etc. I almost died and was in a coma from what he did anyway.

Also, there is no way I would let my gp handle any of my thyroid stuff. The guy was and is totally clueless.

Can your endo refer you to a radiation oncologist, just to see what their opinion is on whether they think you should have the rai or not.

You want to give yourself the best chance of not having the cancer return etc. So you really need to check things out, I am sure it is frustrating already with just these 2 doctors.

You really need a cohesiveness of communication.

I go to a teaching hosp. so I have a "team" between the rad. onc. endo and the surgeon etc. They all contact each other if need be and I totally leave the gp out of everything etc.

Wishing you all the best. I dont know if I would be cofortable with waiting another 6 weeks etc.


----------



## luvmarypoppins

Oh and I forgot to add that the endo said there is no way she is lowering my synthroid any lower until I am at the 5 year mark and this Jan is only going to be 3 years.

 Guess I am in it for the long haul My dh did not have a  face though.


----------



## kimmie

Hi everyone!

Each day is better for me.  I ended up having steak for my birthday and apple pie it was yummy!

WDWDancer hope you can get things straightened out soon.

Luvmarypoppins - hope things go well for you too and feel better soon!

mrsklamc - glad I am not the only one with tastebud issues.  It is amazing that I was able to gain 9 lbs in 4 weeks!  YIKES!  I want my weight down NOW! lol

I am on 100 mcg of levothyroxine.  What dose does everyone else take?

I see the radiology oncologist on Wednesday...hoping for the all clear very soon.  It is a week tomorrow.


----------



## Christine

kimmie,

I take .137.  The lowest dose I've ever taken was .125.  It is a very individual thing and it is mildy affected by your body weight.  So men will usually take higher doses than woman, larger women will take higher doses than smaller women etc...


----------



## kimmie

Thanks Christine.  Atleast now I have a bit of an idea.  I see oncology tomorrow.  I am going to mention a few things to him.


----------



## luvmarypoppins

kimmie - how did your visit go?

Well I have had a really rough week. I survived the reclast infusion. I dont know if I could go through that again. High fever,dillusional, dehydration,chest pain,bones hurt so bad my dh almost had to lift me out of the chair. It was a nightmare.

And in the midst of this my endo decided to change my bp med. On Friday I woke up and my big toes were so swollen I could hardly walk and in the shower my hands were so swollen I could hardly hold the bar of soap. Of course my dh was leaving for China.

Sat. I decided to stop the new bp med. I was seriously debating whether to go to the er or not. I even took one f the ds percocet from his wisdom tooth surgery. 

Now today I am much better and tomm. I am going to the gyn for the strange symptoms I have been having. I hope she does not mention the C word .

I am leaving a voice mail for my endo today so maybe she can pick it up tomm. asking her is she still wants me to come in for a bp check on thurs. which was scheduled due to the new med.

My head is spinning. Tues. going for a mammo. 

Christine - saw a lady comment on thy ca that Dr. Ain stressed the relation between breast and thyroid cancer.

Anyones endo or onc. mention this? None of mine have.


----------



## mrsklamc

I truly cannot remember if it was my endo or Dr.Ain or elsewhere but somewhere I read/heard that once you are diagnosed with one type of cancer you have a higher likelihood of other types of cancer. Wherever I heard/read this they said it wasn't certain if that was because of the radiation or because people who have had cancer tend to be heavily tested, and may just be more on top of their health.

ETA- I'm truly sorry you've had such a terrible experience with the reclast. You are so strong to have been through all you have!


----------



## Christine

luvmarypoppins said:


> mo.
> 
> Christine - saw a lady comment on thy ca that Dr. Ain stressed the relation between breast and thyroid cancer.
> 
> Anyones endo or onc. mention this? None of mine have.



This is all I could find about it (not from Dr. Ain though):





> Pre-menopausal women with thyroid cancer are at increased risk for breast cancer 5-20 years later according to MD Anderson Cancer Center. Breast cancer is not associated with an increased risk of thyroid cancer, which suggests that thyroid cancer treatment with post-surgical radio-active iodine (RAI) was the reason for the greater risk.


----------



## kimmie

luvmarypoppins,
I am so sorry to hear that you had such a rough week.  I am hoping that this week things will get better for you!

I am doing ok.  I am back to the real world now!  That's pretty exciting.  I am having some issues with the levothryroxine.  I have fits of anger and some other issues.  Called endo and she upped my meds to 125.  I know its still not high enough, but every bit helps.  I just am not myself mentally and can't stand some of the things I say and do.  I also seem to have some facial ticks now....she says its cause I don't have enough thryoid hormone.  NO kidding!  
Well, I will keep after her if this level doesn't work.  I have an appt in December.


----------



## luvmarypoppins

Well my medical week is continuing.

The gyn was really nice. My endo said I would like her and I did. She feels it is not cancer, but she, of course, said will do a biopsy as she said she has told people this before and after the biopsy it did turn out to be cancer. So that is scheduled for January, the earliest they can do it. Good, I can wait. More invasive procedures, oh joy.

Then they referred me to another female doctor for some other issues I am having. That will be right before christmas.

Then thurs. is the bp re check again.  My dh called me from China and agreed that we will not have the endo do any more medicine changing until after our trip to Disney. 

I am getting weary of all of this stuff for sure.  Oh and of course in January is more blood work, sono and endo visit, the regular 6 month stuff.


----------



## 1Grumpy9

I just got back from my endo appointment and once again my thyroid levels are high so she is lowering my dosage.  I haven't seen 175mg in sooooo long that it is just weird.  In a little over a year, my dosage has been dropped by almost half.  I am still struggling with calcium levels, but as she put it as long as I feel ok, go with it.  If I start feeling bad, just take some extra calcium.


----------



## kimmie

I am having trouble adjusting to the medication...
I did call my endo and she upped me to 125.

I am going crazy!

I am so mad all of the time.
My stomach is so distended and I am constipated.
I have gained 10 lbs in just over a month.
I am just sick about all of it!

How do you all cope?

I am ready to call her again for some blood work, especially the Free T3 and Free T4.  Someone mentioned that the levothyroxine only gives you T4 and if you can't convert it to T3 you can have problems?

If this is how I will feel...forget it!  Somethings gotta change quickly!

She said I am feeling this way because I don't have a thyroid...I have read that sometimes the levothyroxine doesn't do it for some people.

Anyone have to switch to another med?

I sure hope someone can give me some guidance.


----------



## 1Grumpy9

Kimmi...which med are you on?  I was switched about a year ago to Tirosint and it is working so much better than Synthroid ever did.  I actually have more energy with it.

It is a struggle to keep a balance esp if you don't have a thyroid.  I used to get 90 day supply of meds, but my dosage usually changes every 8 to 12 weeks.  

I know what you are going through because I was there and up until these past couple of months, I felt like crap, gained 30 lbs and didn't want to do anything.  Check with your doctor about another med because sometimes the med you are taking isn't right for you.  They work differently for every person.


----------



## kimmie

Thanks grumpy (I need to borrow your name!)  

I am taking Levothyroxine 125 mcg.  I am really going mad!

I hate feeling this way.

I am going to call the endo and ask for some blood work.  I can't stand myself!


----------



## mrsklamc

Are you on the generic? I would suggest switching to brand name. I'll be totally honest here too- I would do my best to switch endos. Personally- I'm no kind of medical professional- but it just makes me really nervous that first they didn't put you on the diet and now this....


----------



## 1Grumpy9

kimmie said:


> Thanks grumpy (I need to borrow your name!)
> 
> I am taking Levothyroxine 125 mcg.  I am really going mad!
> 
> I hate feeling this way.
> 
> I am going to call the endo and ask for some blood work.  I can't stand myself!



I was on synthroid from the time I was 7 until just the beginning of this year.  After my surgery is when it really wasn't working for me.  Also, give your body about 8 to 10 weeks to get the meds in to you system.  I know when I get my new meds, I usually go back for a blood work check in 8 to 12 weeks.  That gives my body enough time to get the new dosage in my system.

Another trick that my doctore gave me was letting the pill dissolve under your tongue.  It will absorb into your body better.  I used to do that until now because my meds are a gel cap.


----------



## Christine

kimmie said:


> Thanks grumpy (I need to borrow your name!)
> 
> I am taking Levothyroxine 125 mcg.  I am really going mad!
> 
> I hate feeling this way.
> 
> I am going to call the endo and ask for some blood work.  I can't stand myself!



kimmie,

These meds take a LONG time to stabilize in your system.  Synthetic T4 has a very long half life which is great when you forget a pill (you won't notice) but bad for when you are trying to get stabilized.  You've just had surgery and RAI--you've got a LOT going on and it takes awhile.  I am a little surprised they didn't start your right away at .125.  That's usually the starting dose for someone with a total thyroidectomy but it's not a huge deal if they start you at .100.  Your body is going through some incredible, hormonal changes right now.


----------



## kimmie

Thanks everyone

I am trying to have patience, but it never has been easy for me.
I have an appt. with my endo in December (enough time for things to straighten out), but it seems like such an awful thing to do to someone.  Why can't it be a wonderful medication that just works from the beginning?
Then it needs to build up in your system, and if its not right...oopps! grrrrrhhh!

mrsklmac - I know what you are saying.  I am giving her a chance, but if I do not get a good vibe when I go in December you better believe I will switch.  The problem is I am not in a big city, so my choices are a bit limited.(but no matter - I will be proactive!)
This afternoon I seemed in better spirits..so we will see what tomorrow brings
I still may call and ask for some blood work.


----------



## luvmarypoppins

kimmie - hope you are feeling a little better. The adjustment does take time. 

I also do not take the generic and only take the name brand. I dont want to worry about anything in the formulation etc. 

Well I didnt get a mammo call back, so I am assuming that is ok, ptl!

The endo on thurs. still does not like my bp numbers. She said she talked to her colleague about me. Um, I know if they do that at the univ. hosp then you are one of their difficult cases, which I always seem to be to all the drs. and surgeons there.   She wants to add another med in addition to my reg. bp med. Of course I told her no way until I get back from FL. Didnt say Disney in particular. She would probably look at me like I was a nut case for sure.

I asked her what the side effects of this med would be and she said possibly mild diarrhea. Oh what fun. We shall see. I think she needs a better Plan B  for me. 

And to pass the the time while my dh is away on his business trip I am finalizing my trip plans. I ordered a wheelchair. I just dont have the strength to walk all over the place and my dh hates the magical express so we get a towncar and I may try to change 2 adrs. One I heard the water at coral reef is dirty? with filtration problems and then I didnt know the MK was open till 1 am on Dec 3rd Ithink, or very late and I made a late  epcot adr for Illuminations etc.

Going to Disney and leaving all this medical stuff behind. Priceless!!


----------



## kimmie

Oh so glad to hear you are busy planning your trip!


----------



## mrsklamc

I saw on the YES thread on the budget board that someone's Youth Education Series class was cancelled due to maintenance on the aquarium so maybe it will be fixed by then? Where are you staying this time? Never stayed on site, gotta live vicariously!


----------



## luvmarypoppins

mrsklamc said:


> I saw on the YES thread on the budget board that someone's Youth Education Series class was cancelled due to maintenance on the aquarium so maybe it will be fixed by then? Where are you staying this time? Never stayed on site, gotta live vicariously!



We are staying at the Beach Club. My dh has a really good job and of course he treats me like the cancer princess for sure. We booked this with the bounceback rate in May so we got like 40% off the room. Dh will also only sleep in a queen sized bed. We are both big people.  I hope we get to swim in Storm Along Bay at least once.  And in our May vacation we had the 6 nights of the hotel for free with dh frequent flyer miles. So we have more for the vacation budget this trip. 

I am most looking forward to the CP and seeing Michael W. Smith. Of course its all about the food so we have  a lunch and dinner adr each day.  I love looking at all the christmas decorations. Dh just wants to chill and eat, but of course he is on the phone and laptop. I already laid down the rules. If he wants to work, then I might meet him in a park etc. Last time he was working in the lobby from like 6am to 9 am on the wireless at the YC. 

The only 2 new places we are eating at this time are Rose and Crown and Yak and Yeti. I think dh will not like Y and Y. I didnt want that. But he said no Tusker House again.   I am also hoping to meet one of the breast cancer gals for a few minutes one day. Met her dd in May (she works at Splash Mtn). 

Well with all the drs. visits and procedures I have coming up and the surgery in April, I need this vacation for sure. Hopefully I will be healed enough to go back in May too as she said the post surgical stuff is 6 weeks etc. RAI, dont ya just love it??, except when it scars and damages your tear duct


----------



## kimmie

We will need you to update us on your trip/plans.  It is wonderful to hear about your plans!

My Dh is like yours, but I figure if he wasn't a hard worker then we wouldn't have those trips.  Our 30th anniversary trip to California was pretty much ruined by his work, and then they let him go 2 weeks after we got back!  He is back to consulting where he can leave the work at the end of the day!

Anyway, please keep us updated on the trip!


----------



## luvmarypoppins

Just wishing everyone a Blessed Thanksgiving, 

I am just so thankful to God that I am still alive after all I went through.

My cup of blessings is overflowing this year for sure.

I know its weird but now everytime we go to Disney I get my picture taken with the Beast. It just reminds me that I am still here and kicking the beasts butt aka cancer


----------



## dischick4778

Hope everyone had a wonderful and blessed Thanksgiving.  I was never a terribly emotional person before cancer but now I'm a big mush.  Thanksgiving was wonderful and I feel very blessed to be alive and have my family to enjoy life with.

On the note of cancer related issues, I recently found out my tear ducts were damaged from the RAI as well.  My eye doctor put in tear duct implants (not sure what they are called) and gave me eye drops.  He says the implants dissolve in 90 days.  If they work and make me feel better he can continue to put them in every 90 days or I can have surgery to permanently replace them.  Not sure what I want to do yet.

Glad to hear Disney trip plans are being made.  That is what keeps me sane.  We are planning to go back in July, staying at Animal Kingdom Lodge again, Kidani Village was beautiful.  Hope you are all doing well!!


----------



## luvmarypoppins

Jenn - sorry to hear you are having all the eye issues too. I know my friends friend called them plugs? but I think she is having the permanent thing done now.

My surgeon called them stents. I dont know what the correct term was. Surprisingly my surgeon did not even talk about a temporary option. I guess I just want to get it done with once and for all. She also said if I am getting more radiation, she will just do the other eye ahead of time, so I dont have this problem again etc. I dont know if that would be the temporary or permanent procedure??

Back from Disney. I love it at Christmas time. The weather was decent. Loved our room except on the last day when the room started gurgling and brown stuff was coming up out of the shower. Hmm, this is the Beach Cub?

Loved the Candelight Processional with Michael W. Smith. Enjoyed a lot of the food. Chefs,Grand Floridian Cafe,Brown Derby etc.

Got to meet Teena from the Beach Club, Lisa from the Breast Cancer thread on the CB and Ray Sharpton, famous scooter decorating diser!

We booked the Beach Club again for our usual May and Dec. now turning into late November trips. Hope they get the plumbing issues resolved.

And while there I experienced the unusual stomach pains. Once it took my breath away. I dont know if this is a gyn problem or the surgeons problems. I guess I will wait and see what is happening. Its scary and frustrating all at once.


----------



## dischick4778

Plugs, that sounds familiar, perhaps that's what my Dr. called them.  

Sounds like your trip was wonderful!  I've been a few times in Nov. and it is so nice to see all the decorations without dealing with the Christmas crowd.  I'm surprised to hear about the bathroom issue at Beach Club, I would expect better.  Perhaps it was just a fluke.  

Did you eat at Rose & Crown?  How was it?  I've been trying to convince my family to go there, but in looking at the menu they are not sold.  We are staying 8 nights in July and need one more dinner place to pick so I look forward to your comments on R&C.

Hope you are feeling better!


----------



## mrsklamc

Glad to read of everyone's Disney plans..I thought maybe I could convince DH of a quick trip to the Capital One bowl and maybe stay at AKL but he just is not a spur of the moment type guy.

I guess I forgot to share my news- Dr. Ok'd TTC...so if it works out I will have answers for those who come after me wondering how the pregnancy thing works. Seems there are more of us thyca patients all the time!


----------



## dischick4778

mrsklamc said:


> Glad to read of everyone's Disney plans..I thought maybe I could convince DH of a quick trip to the Capital One bowl and maybe stay at AKL but he just is not a spur of the moment type guy.
> 
> I guess I forgot to share my news- Dr. Ok'd TTC...so if it works out I will have answers for those who come after me wondering how the pregnancy thing works. Seems there are more of us thyca patients all the time!



Great news!  Thanks for sharing.  Wishing you all the best along the way.  I hope it's not too complicated for you.


----------



## WDWDancer

Hi All - Hope you had a great Thanksgiving!  I was able to go home and spend some time with my family it was so nice.  I just came from the doctors and it wasn't the news I wanted.....Radiation is needed and they would like it done asap. So I am starting LID and going off my medication December 21st - Merry Christmas to me and RAI is scheduled for Jan 10th.

My surgery was September 19th prior to surgery the highest my TSH ever got was 6.4 my first bloodwork the end of OCT my TSH was 17.4 so they increased my dosage and today I find out that my bloodwork taken December 2nd my TSH was 64.8!!!!!!!!!!!!!!!!!!

HOW IS THAT POSSIBLE?!?  The doctors are completely baffled but for me at least it explains why I have been feeling so bad...I thought it was just stress of work and the holidays

Thanks all


----------



## mrsklamc

Are they transitioning you to cytomel at all?

Are you taking your synthroid an hour apart from any other food or pills w/ a full glass of water? Are you taking brand or generic?


----------



## WDWDancer

Nope no cytomel - I actually think I am going to call tomorrow and see if we can start everything next week instead of the following.

I take brand name synthroid (same pharmacy for past 2 yrs).  I take the synthroid around 430-5 am 7 days a week w/water, don't eat or drink anything until 7-8 am, the rest of my vitamins I take in the evening.  I've been shaking my head trying to think what routine I might have changed....


----------



## Christine

WDWDancer said:


> Nope no cytomel - I actually think I am going to call tomorrow and see if we can start everything next week instead of the following.
> 
> I take brand name synthroid (same pharmacy for past 2 yrs).  I take the synthroid around 430-5 am 7 days a week w/water, don't eat or drink anything until 7-8 am, the rest of my vitamins I take in the evening.  I've been shaking my head trying to think what routine I might have changed....



What dosage are you on?  

It's also a shame that with your TSH being over 60, they can't just give you the RAI now.


----------



## luvmarypoppins

mrsklamc said:


> Glad to read of everyone's Disney plans..I thought maybe I could convince DH of a quick trip to the Capital One bowl and maybe stay at AKL but he just is not a spur of the moment type guy.
> 
> I guess I forgot to share my news- Dr. Ok'd TTC...so if it works out I will have answers for those who come after me wondering how the pregnancy thing works. Seems there are more of us thyca patients all the time!



Micayla, wishing you all the best.


----------



## luvmarypoppins

WDWDancer said:


> Hi All - Hope you had a great Thanksgiving!  I was able to go home and spend some time with my family it was so nice.  I just came from the doctors and it wasn't the news I wanted.....Radiation is needed and they would like it done asap. So I am starting LID and going off my medication December 21st - Merry Christmas to me and RAI is scheduled for Jan 10th.
> 
> My surgery was September 19th prior to surgery the highest my TSH ever got was 6.4 my first bloodwork the end of OCT my TSH was 17.4 so they increased my dosage and today I find out that my bloodwork taken December 2nd my TSH was 64.8!!!!!!!!!!!!!!!!!!
> 
> HOW IS THAT POSSIBLE?!?  The doctors are completely baffled but for me at least it explains why I have been feeling so bad...I thought it was just stress of work and the holidays
> 
> Thanks all



Sorry to hear that you have to have the RAI, but after it is all done you will know that you did your best and all that you could to kick this in the butt. If you  have any questions about the diet, just ask. 

I always thought that the worst season to do the diet would be the winter, but if you get really creative, you can do alot of things. Just the fresh fruits might be a little more expensive etc.  And if you find the fresh vegetables limited in what you like, I was allowed to have Birdseye Steamfresh ONLY,NOT the sauced varieties, just plain. Read the labels!!

Wishing you all the best. Hang in there!


----------



## ge0rgette2

I haven't been diagnosed with a thyroid issue, but feel I should be!

I have been tested before and thyroids levels come back 'normal'. 
I think it's been about 4 years since my last thyroid check. I'm going to have my PCP check again, actually my Hematologist said next month when she tests my hemoglobin levels, she'll check my thyroid. She's great, I see her for anemia and it gets me every winter, doesn't matter how much iron I take daily, it's never enough and boom, it hits me every winter... She gives me IV Iron and it helps tremendously.

Anyways - I know thyroid thread! hehe... I believe I have soooo many symptoms of thyroid problems..

I'm going to read thru the thread tonite 

Hope everyone feels well - enjoy your holidays!
Georgette


----------



## dischick4778

Visited my endo today, she is happy with my blood levels.  Said she is planning for a neck sono in April.  If that comes back clear she will not have me do a full scan next year.  I'm not sure how I feel about that.  Happy I would not have to go on the diet or nervous that something might be missed.  She also said if my levels stay as is she will lower my dosage to 175.  I know this all seems like good news, but I'm a rather be safe than sorry type. 

Hope you're all enjoying the holiday season!


----------



## Christine

ge0rgette2 said:


> I haven't been diagnosed with a thyroid issue, but feel I should be!
> 
> I have been tested before and thyroids levels come back 'normal'.
> I think it's been about 4 years since my last thyroid check. I'm going to have my PCP check again, actually my Hematologist said next month when she tests my hemoglobin levels, she'll check my thyroid. She's great, I see her for anemia and it gets me every winter, doesn't matter how much iron I take daily, it's never enough and boom, it hits me every winter... She gives me IV Iron and it helps tremendously.
> 
> Anyways - I know thyroid thread! hehe... I believe I have soooo many symptoms of thyroid problems..
> 
> I'm going to read thru the thread tonite
> 
> Hope everyone feels well - enjoy your holidays!
> Georgette



I struggled with anemia a few years ago.  Since I already had a known thyroid issue (I don't HAVE a thyroid), I was just sure that all my troubles came from that.  I was tested and retested a zillion times (normal), changed medications/brands, it made no difference.  I had horrible symptoms that I attributed to low thyroid even though the thyroid had been ruled out.  Nope it was anemia and then after the anemia was corrected, low ferritin.  I got way more worse symptoms from that than I ever got from being severely hypothyroid.  Even though you are getting the IV infusions, that's really only a bandaid.  I'm betting it is your chronic anemia problems.


----------



## luvmarypoppins

dischick4778 said:


> Visited my endo today, she is happy with my blood levels.  Said she is planning for a neck sono in April.  If that comes back clear she will not have me do a full scan next year.  I'm not sure how I feel about that.  Happy I would not have to go on the diet or nervous that something might be missed.  She also said if my levels stay as is she will lower my dosage to 175.  I know this all seems like good news, but I'm a rather be safe than sorry type.
> 
> Hope you're all enjoying the holiday season!



Jenn, glad your endo visit went well. 

My rad. onc. and the endo both believe that if you have 2 clean scans then the blood testing and sonos are fine. My rad. onc. says she will only do another scan at the 5 year mark I think.

Also if you want to TTC again, you should really limit your radiation exposure anyway. With a scan you have the radiation exposure even though its a lower dose etc.

And Christine said this was true too, when I asked, the rad. onc. and endo both told me that the blood tests and sono together are just as good as a scan. The results of both would be about the same.

You will feel so much better when you go from 200 to 175. I definetly felt more normal and less high strung. 

Also...is this a 6 month sono? My endo wanted to put me on the 6 months of blood testing and the one year of sono. I told her, no I still want the sono too at 6 months. I am with you on the better safe than sorry stuff and since you also have a rare variant like me, I think I would still ask for the 6 month sono too, because you have yourself covered both ways, blood and pictures etc.


----------



## dischick4778

luvmarypoppins said:


> Jenn, glad your endo visit went well.
> 
> My rad. onc. and the endo both believe that if you have 2 clean scans then the blood testing and sonos are fine. My rad. onc. says she will only do another scan at the 5 year mark I think.
> 
> Also if you want to TTC again, you should really limit your radiation exposure anyway. With a scan you have the radiation exposure even though its a lower dose etc.
> 
> And Christine said this was true too, when I asked, the rad. onc. and endo both told me that the blood tests and sono together are just as good as a scan. The results of both would be about the same.
> 
> You will feel so much better when you go from 200 to 175. I definetly felt more normal and less high strung.
> 
> Also...is this a 6 month sono? My endo wanted to put me on the 6 months of blood testing and the one year of sono. I told her, no I still want the sono too at 6 months. I am with you on the better safe than sorry stuff and since you also have a rare variant like me, I think I would still ask for the 6 month sono too, because you have yourself covered both ways, blood and pictures etc.



My first clean scan was this past July.  I assumed because of how bad they told me the cancer was that I would at least have two scans.  I am happy since we do want another child and the diet is terrible.  But I also want to know that I'm ok and cancer free.  

We have been doing blood every 2-3 months since my surgery in summer 2010.  This will be the longest stretch of not seeing my endo, she told me to return late April for the sono.  That will be the first sono since my scan this past July.

My anti bodies are still high, but the number drops every blood test.  Currently they are in to 700s.  She says as long as the number continues to decrease I should not worry.


----------



## luvmarypoppins

Well I spent a lot, too much time getting the phone run around and constant holding today.

I cancelled my bp check at the endo today because of the flu symptoms I still have plus no transportation. 

Then I scheduled my neck sono for Jan. 9th, and then I will have to do the blood work and Jan. 16th I have the wonderful pelvic sono and next week I have the new specialist to address other pelvic issues I am having.

Then my reg. 6 month endo visit is Jan. 23.

I decided to go back to the regular imaging center instead of the hosp. since the girl I liked in the hosp. is on maternity leave. I guess I am back to Ms. Hurry Up and a Little Grumpy, Non Social sonographer, sigh. 

Sorry, I am venting. I am just glad I went to Disney as I knew all this was coming up.   Also if the next biopsy I am having for my other issues, not the thyroid stuff, comes back as cancer, which the one dr. said she doesnt think it is, but doesnt know yet, then I will most likely hear that news while my dh is in China again. Sigh. I guess it should be easier to hear the 2nd time around??   I am going to be doing alot of praying for sure.


----------



## Christine

luvmarypoppins--good luck with all of that and keep us posted.  What other problems are you having (or are they personal)?

I had my endo appt. on Tuesday.  Said it was time for the neck sonogram.  I asked if he had a specific place he wanted me to go to and he said it didn't matter.  Last time I had it done at the hospital.  The tech was very nice but I HATE setting foot in the hospital.  It's very psychological for me.  So I'm just going to a radiology center and YAY they had Saturday appointments so it's January 7th for me.  

Just waiting on the TSH and thyroglobulin results now.


----------



## mrsklamc

Waiting is awful.

LMP, how was your trip?


----------



## kimmie

lovemarypoppins--please feel free to vent any time! Please tell us how your trip was.

You all have listened to me 

I have been busy trying to get things straighted out.  Not really liking my endo, but I went to my gp today and atleast felt like he was listening to me  He is testing the T3 for me.  THANK YOU!  That's all I was asking for!  I can't stand this big fat stomach and 8 lb weight gain in 5 weeks!  I have been watching what I eat and exercising.  The endo told me its because I am getting older...really? Also said that I am too impatient...maybe so,  I almost had to laugh in her face!  She did check my level of TSH it was 0.56, but she did not test the T3.  I am taking .125 of Synthroid now, not generic.  Now she tells me it will take time to build up ..blah blah blah..My doctor now put me on Lexapro for my anger issues!

So thanks for letting me vent


----------



## luvmarypoppins

Well after I posted that the wonderful endo called me back. Gosh, this lady is great. Although sometimes I think she blows off my symptoms too. I told her about the stuff with the new bp med. She said its not related. Hmm, she said I could have some of those symptoms. I dont believe her and she is the one who told me last time, you are *so* sensitive etc. Anyway I am going on Tues. for the bp check. The side effects are slight digestive issues which I have at times etc.

Christine - I am having alot of symptoms. Probably tmi. I guess its a gyn. pelvic or bladder problem or something related to the mesh the other surgeon put in etc. I am going to tell this dr. I want the least amount of testing possible to get the most accurate diagnosis etc. And I will tell her if she needs to talk to my other drs./surgeon etc, then do it.

Micayla - the trip was good. I said a few comments a couple pages back. The last morning we had plumbing problems with the room so that was scary. Glad we were checking out. Met 3 disers, Teena (BC greeter),Ray Sharpton and Lisa, from the Breast Cancer thread. I did a dining report.

Loved the decorations. Liked the story tellers,joyful noise gospel singers, and of course the osborne lights and candelight processional with Michael W. Smith.

Ate Alot!! (Oh and Jenn - I would skip Rose and Crown). We did Chefs, GF Cafe, Hollywood Brown Derby, Kona, Captains Grille, Cape May,Liberty Tree Tavern, Tutto and Cosmic Rays. 

I also think, (although I might be crazy) that we saw Justin Bieber at the BC way after midnight on Dec. 3rd. I dont know if he taped the parade that day or the day before. 

We booked the BC again for May 17-23. Nothing like spending your b day and anniv. with Mickey and hanging out at Storm Along Bay.


----------



## mrsklamc

Oh yes, now that you mention it I do remember. I saw something last night that made me wonder if the aquarium got fixed, and I wondered if that had worked out for your trip.


----------



## Christine

kimmie said:


> .My doctor now put me on Lexapro for my anger issues!
> 
> So thanks for letting me vent



Watch out for some weight gain on Lexapro.  This one is notorious for causing that.


----------



## luvmarypoppins

mrsklamc said:


> Oh yes, now that you mention it I do remember. I saw something last night that made me wonder if the aquarium got fixed, and I wondered if that had worked out for your trip.



We skipped the whole living seas. I dont know, a whole week and we never got over there, just too much to do and my dh is like a def. non commando person. Like I am on vacation, if we get to a park by lunch fine, need to check my e mails etc.  I guess I always deal with that aspect. But since he works his butt off and pays for the trip I dont say all that much.


----------



## luvmarypoppins

kimmie - so sorry you are dealing with all this stuff too.   I am sorry you are having endo issues. I think that is the key, that you find one you like, you will deal with him/her for a really long time. 

I dont go to anyone around here, I go to the univ. which is farther from my house, but worth it. Although in the metro area, less than 30 min is not far. (Jenn can relate).

Good your gp is on board and willing to do the testing. Mine is clueless. I wouldnt trust him with anything.

I am sure the weight gain is frustrating too. I honestly have never gained any weight. I acutaly lost over 60lbs, due to the cancer, coma and bowel obstruction. I think I have put about 30 plus back on.

Also sorry you are dealing with the anger issues. I was really high strung, but it was due to the high synthroid dose (200), now I am at 175 and its so much better for sure. Hope you can work all this out too. 

Wishing you all the best.


----------



## luvmarypoppins

Christine - I know what you mean about the psych stuff. I try to put it out of my mind. But I know I am suppose to have that eye surgery in April, so its back "there" again.

I still dont know how to deal with all this long term. I guess we need your expert advice!!

But I am sure its never out of your mind either, even long term? But you are inspiring to all of us. 

Wishing you all the best with your upcoming testing too!


----------



## dischick4778

So my endo called me this week, after receiving my blood results she wants to lower my synthroid now instead of waiting until April.  She lowered it to 188.  And also lowered my calcitriol.  She says my calcium is too high now.  I guess these are good changes.  She also said "this lower dose will make you feel a lot better" - she must be referring to my anxiety and anger issues.  Well, hopefully she is right, my husband will be thrilled.  

Hope everyone is doing well with the holidays coming up and not stressing out too much.  I'm off from work til January 3rd so that is helping a lot.  Just enjoying the time with my son and getting ready for Christmas.


----------



## kimmie

Hi dischick!  Glad to hear you are feeling better!

I have had anger issues too.  I think I am feeling better now. I think my anger was when I was hypo.  It has been in the last few days that I am beginning to feel more "normal".  I am really glad to be on brand name synthroid.  The generic was just not right for me.  

Does anyone have any way to drop some weight?  I have been trying but it just sits there!

My endo says it will come off, but I think it is here to stay


----------



## Christine

kimmie said:


> Hi dischick!  Glad to hear you are feeling better!
> 
> I have had anger issues too.  I think I am feeling better now. I think my anger was when I was hypo.  It has been in the last few days that I am beginning to feel more "normal".  I am really glad to be on brand name synthroid.  The generic was just not right for me.
> 
> Does anyone have any way to drop some weight?  I have been trying but it just sits there!
> 
> My endo says it will come off, but I think it is here to stay



kimmie,

Some of the weight will just fall off on its own when your thyroid hormones regulate enough and your TSH gets to normal.  Whenever I was REALLY hypo, I would put on about 10 lbs and by the time I got down to a normal TSH it was just gone and I didn't have to do anything.

As far as regular weight issues, which at 47, I certainly struggle with but nothing terrible, the best thing for me was to start logging EVERYTHING I ate into SparkPeople.  MyFitnessPal is supposed to be even better so I may try that next time I do this.  Anyway, just log everything you eat into it and be honest.  Over a 2-3 week period of time, see how many calories you are eating.  You will probably be surprised.  Most people eat way more than they think.  I was hungry a lot but found I was eating about 2500 calories a day, sometimes more.  Well, no wonder I was 15 lbs heavier than I wanted to be.  It sure would have been easy to blame my "thyroid".  Once I saw where I was going wrong, I started to tweak my eating.  Not really dieting but cutting back.  Then as I got used to that, I got way more strict.  After a few weeks, I got my intake down to about 1700 calories per day.  A "good" day was 1500 calories but I couldn't often acheive that (I don't do well without food).  Around this time, I added in about 30 minutes on my treadmill.  It took me weeks but I really ramped up the intensity without adding on much time.  The weight began to roll off.

I started this in January, had maybe lost 2-3 lbs by February.  By April I had lost about 15-18 lbs.  That doesn't sound like much but I really didn't have a lot of weight to lose.  I ended up at about 134 lbs at 5'8".  I felt to thin so I started adding food back in.  I feel best at around 143.  Of course, I have gone passed that now so I will probably get myself under control in January again.  Seems to be a good time for me.


----------



## kimmie

Thanks Christine!

I know I should start writing down everything I eat because I am "watching it" but probably consume more calories than I think.
I am ready to get back back in the gym too!

I was hoping that some of this weight would drop off soon.

Thanks for the insight!


----------



## mrsklamc

It's counter intuitive but some people (me included) gain when hypER...your body is constantly stimulated so it constantly stimulates you to eat.


----------



## luvmarypoppins

dischick - glad you got your synthroid lowered. My dh was so happy too. I freak out alot less now. Dh went grocery shopping for us when I was sick last week Of course he got so many of the things wrong. I didnt even do my usual flying off the handle at him. I just kind of laughed. We both did, I said, see I knew you wouldnt get it right!     Glad you get some time off. Do you know anything about the LIU area in Brooklyn. My ds is thinking about the nursing program there. He would get alot of scholarships, but I dont know if that is a good/safe area etc??

kimmie - I hope you get your weight issues resolved. I really dont even think about my weight. It went down 60lbs. but that was post cancer and post coma and post bowel resection. Now I have gained 30 lbs. of that back. I have stayed about the same for a year. I wont say how much I weigh. Suffice to say its alot. The drs. have never said anything about it. Only the stomach surgeon. He just said to watch it. 

Well I went to the endo today for the bp check. The nurse said it was good and she ran the number by the endo and she liked it too, so she told the nurse to have me keep taking the new med. I didnt even have to see her. 

So now thurs. its the new specialist for some of my other issues. We will see what happens. I guess I would just like some dr. to figure out whats going on and give me some answers. I think she will wait and see too as I will tell her I am already scheduled for a biopsy and sonogram mid Jan.


----------



## mrsklamc

I think I may try this rice milk the next time I have to do the diet: http://moneysavingmom.com/2011/09/do-it-yourself-homemade-rice-milk.html

I will have to re read the thyca guidelines about rice though. I think they say to use basmati rice or something like that.


----------



## Christine

Finally got a call back from my endo today on my labs.

Tg = NEGATIVE.  That always calls for a .
TSH = 0.6.  My endo said he wouldn't mind seeing it around 0.3.  Now, I've been at that before on this dosage so not sure why it's a little "up" these days.  Funny, I was sort of sure that he was going to tell me my TSH was very low.  I've been feeling kind of panicky, shaky, and just off.  I was hoping I was too hyper but NOPE, I think I'm suffering anxiety.  I also have not been sleeping well since early November.  I'm in one of these insomnia ruts and I think it's got to be perimenopause (I will be 48 next week).  It's tough surviving on 5 hours of sleep and working full time.  

My Basic Metabolic Panel came out good so I guess all my organs are humming along.

Just wish I felt better.  I've got a terrible case of "golfer's elbow" that is really flared up.  No, I won't go to the doctor either but I did something to it this past weekend and my hand on the affected arm was turning blue if I held it in certain positions too long.  I guess the inflammation was affecting the circulation.  Anyway, I iced for awhile and that scary symptoms seems to have disappeared.

I really HATE being a wreck over the holidays.

DD is home from college and just figured out she was 0.5 points off from meeting her target GPA so she may get suspended.   Grrrrrr....


----------



## kimmie

Oh Christine I hope you start feeling better soon.
Can you take melatonin?  I take some at night just to help me relax.  It really does work.  They have a slow release that is supposed to keep you relaxed all night.  I was waking up almost every hour!  It is better now.

Perimenopause can be a real pain but so is menopause!  lol
Take a deep breath and try to enjoy your family.


----------



## mrsklamc

Christine I am so happy to hear about your results. Sometimes when I get in those ruts I take some benadryl to help me sleep.


----------



## dischick4778

luvmarypoppins said:


> dischick - glad you got your synthroid lowered. My dh was so happy too. I freak out alot less now. Dh went grocery shopping for us when I was sick last week Of course he got so many of the things wrong. I didnt even do my usual flying off the handle at him. I just kind of laughed. We both did, I said, see I knew you wouldnt get it right!     Glad you get some time off. Do you know anything about the LIU area in Brooklyn. My ds is thinking about the nursing program there. He would get alot of scholarships, but I dont know if that is a good/safe area etc??



I actually told my husband that I hear the lower dose should make me a more reasonable and relaxed person.  I told him I would not ask, but that if he notices change for the better to please let me know so that I can feel more normal.  I am hoping that day comes soon.  Although it's been challenging lately bc my son is on a waking up at 2am kick.  

As for LIU Brooklyn - is your son going to stay at the campus?  It's not the best area but if he's only there for classes during the day he will be fine.  It's not a great area to live in and be in at night.  But there are areas not too far that are good.  Let me know if you have more specific questions.

Good luck tomorrow!


----------



## Christine

I am about ready to try the melatonin but I'm so sensitive to things that it scares me.  I got hives from taking B-12 liquid because of an herb or dye that was in the product.  There are only certain iron supplements I can take because I am allergic to a specific filler that some manufacturers use.  It's ridiculous.  So the melatonin makes me nervous.

I have used Benadryl with some success but once I start using it often it stops working.  I also have some Xanax on hand but I don't want to become reliant on that again.

As for the melantonin, how long does the "relaxed" feeling last.  My alarm goes off at 4:15 in the morning and I don't want to be groggy.  That happened with the Ambien.  I just don't have a full 8 hours to be in bed (unless I go to bed at like 7:30).


----------



## kimmie

Christine,
I get my melatonin from the grocery store, but if you go to GNC or an herbal/whole foods type place I bet that they would be more natural (less fillers and dyes).

It does not make you groggy in the morning at all.  It just helps your brain to shut off at night so that you can fall asleep.  Ever lay in bed and things are still playing out in your head?  This stops that and lets you rest.  I love it!

I have not used the slow release (they have them at GNC), but thought about it if I kept waking during the night.

Hope that helps!


----------



## luvmarypoppins

Micayla - yes, you are only suppose to use basmati rice. I read on thyca. that everyone raves about home made almond milk. I drink plain tea so I only miss themilk in cereal, which you cant have anyway, or at least the kind I eat.
Did you find the North Face jacket for your niece? My ds got one for a a gift once, just the fleece one, no hood. 

Jenn - he would have to live there and since its nursing school he would have to do clinicals, so I am hoping this school will be on the bottom of his list. He hasnt applied yet but saw how much scholarship $ he could get which makes it really affordable.

Christine - So glad that you got great test results. Hope things work out for your dd. I am sure she will find her fit at the right college and the right major etc.  I am glad all the ds have lived at home so far for college. I cringe thinking of dorm fees for 3 kids for 4 years. Only worrying about last ds if he goes away. I hope your dd can get a good plan going for herself. My youngest ds found the comm. college easier than the state univ. and my one ds went to a small local private college. He did well with the small class size and attention, but it was expensive. He didnt qualify for anything.  I hope your sleep issues get resolved. Some how I never have a problem with it. I usually make sure dh gives me a back rub so that helps. I use to listen to the radio but cant tune in my favorite station anymore, goodbye Delilah. If you listen to her, you will fall asleep for sure. 

Well I am back from the specialist. Found out the new bp med I am on has made me lose like 10 lbs. in the last few weeks. I think this is a side effect of the med. If you eat anything that is high fat, your body quickly gets rid of it. But I also dont feel as hungry. I will discuss this with the endo in Jan. So this dr. thinks everything is ok, but I need a kidney sono and a wonderful invasive procedure in March, Ugh. In March I already have the eye surgery visit prep etc. It never ends. My bp is good so the new med is working. Now this dr. wants me to try a different med for my condition. We shall see. My head spins.


----------



## luvmarypoppins

kimmie - hope things are going good for you too and that you can get back into the gym soon. One of my ds used to work in a gym. He told me, mom you wouldnt even be able to make it on the treadmill. 

wdw dancer - bet you are shopping for all the lid diet stuff. Best of luck and if you have any questions, just ask away. Everyone has some great tips to share if you need them.


----------



## Christine

luvmarypoppins said:


> No kidding!
> 
> I had my appt. with the gastroenterologist.  I've been on Prilosec for years.  I swear it messes with my intestines.  I know, TMI!!!  I told her I can no longer eat apples, pears, grapes, and nuts.  I may try to wean off but it's hard.  Anyway, NOW I have to add a DEXA scan to my list of appointments because long-term Prilosec use can cause osteoporosis.  YAY.  At least that's an easy test.


----------



## luvmarypoppins

Wishing everyone a Merry Christmas, and a Happy Holiday Season if you celebrate something else.

My ds20 is going to be Joseph tomm. night and sun. morning. He just has to stand there. I am just so happy to be alive to see him.


----------



## dischick4778

Merry Christmas and Happy Holidays to all.  Healthy New Year to us all as well!  Enjoy!!


----------



## kimmie

Merry Christmas and Happy New Year everyone!


----------



## luvmarypoppins

Just wishing everyone a Happy and Healthy New Year.

(Heah I am only having 1 operation so far in 2012, but I am still saying the healthy part

Oh and guess what I got it confirmed that dh and I saw Justin Bieber when we were there at the Beach Club Lobby on Dec. 3rd. Yeah, brush with fame! He was so short and tiny and I think Selena was with him. But his leather jacket was awesome and really expensive.

Well I am starting the New Year off right. Dh leaves for China next Friday. On the 9th ds21 is taking me for the neck sono, then I will throw in the blood test and the wonderful pelvic sono and also endo visit. Need to schedule the kidney sono. Oh what fun!!


----------



## dischick4778

Wishing a Happy & Healthy New Year to all!

Starting off on the right foot, we just booked AKV - Kidani Village for July.  My son loved it this past summer and we are so excited to go again in 2012.


----------



## karajeboo

Thank you Lauren for directing me over here!!!

I'm having a partial thyroidectomy on Jan 25.  I need advice!!!!  I have a 2mm nodule that came back with "suspicious" cells in a needle biopsy.  The kind of cells that if cancer will never show up in a needle biopsy.  The pathologist said 15-32% chance that they are cancerous.  So......

My entire right lobe will be removed.  Dr said that IF the biopsy comes back as cancer, then they will remove the rest of the thyroid, then put me into a hypothyroid state (or hyper, don't really know the particulars at this point!), then do the radioactive iodine after 4-6 weeks......

Here's my concern (aside from the obvious health concerns!!!!) - I have a Disney cruise scheduled for March 30!  So I'm praying for the best, but semi-planning for the worst news.....  I mean, I'm sure we'd have to cancel the March 30th cruise, but then the DISmoms cruise is May 6.... that may be doable, but I just don't know.

How long does the surgery last for just partial thyroidectomy?  I have my mother coming to stay with us for 5 days, just so the household can run normally.  The dr has scheduled me for one night in the hospital, so if my mom is here then DH won't have to take time off work, other than the day of surgery and the day after to bring me home.....

I'm thinking the first couple days are uncomfortable, but a fairly quick recovery?  

My other big concern... I've NEVER had any kind of surgery before!!!! 

OK, folks, time to ease this DISmama's fears!!!  Let's hear it!


----------



## mrsklamc

If everything is clear, you will be fine in plenty of time for your cruise. You will probably be back to normal within a couple of weeks other than getting your thyroid hormone level adjusted.

I have never heard of "the kind of cancer cells that wouldn't show up in a biopsy even if they were cancer." Did they elaborate on this at all?


----------



## karajeboo

mrsklamc said:


> If everything is clear, you will be fine in plenty of time for your cruise. You will probably be back to normal within a couple of weeks other than getting your thyroid hormone level adjusted.
> 
> I have never heard of "the kind of cancer cells that wouldn't show up in a biopsy even if they were cancer." Did they elaborate on this at all?



Yes, there were 4 possible outcomes from the needle biopsy: 1) definite cancer cells, 2: definite NO cancer cells, then 3 and 4 are two different types of cells, follicular and papillary and I was told neither one would show up in a needle biopsy.  They just come back as "suspicious" and will only show clearly in a full biopsy.


----------



## luvmarypoppins

welcome karajeboo

My experience was definetly not normal so I dont want to comment on all of it.

But I would say try to make things comfortable after surgery, maybe a button down shirt or something that does not interfere with the surgical site etc. Others have said one of those travel neck pillow things help.

If you are too anxious pre surgical ask your dr. for some anti anxiety meds etc. 

Also if it ends up that it is cancer, and I am wishing you all the best and that it is not, I would definetly see about doing thyrogen versus going hypo, although some drs. have different ideas about it. My rad. onc. uses thyrogen only. There is a shortage but you can get it. I have read on thyca. org that there are 4 major suppliers. They tell you how to work with the system etc. 

We can also help you with an of the lid questions you may have if you have to do the diet.

Just take it easy for a few days post op. Let everyone wait on you. 

Surgical wise I would say, as I answered another poster on the cb, I am one of those people who want to hold the mask to go to sleep, They were fine with it. 

My cancer did not show up in the needle biopsy too, but it was because they finally figured out I had a rare variant. They only figured it out a few days before and I had to have a core biopsy for that. That was not fun at all, but my dh took me out to outback for dinner after that one.

Have you checked out your surgeon. A good one has done about 100 thyroidectomies minimum. I definetly would not go to a general surgeon etc. I go to a teaching hosp. and my surgeon trained at UCLA and Columbia too. But even with that things happen etc. 

Wishing you all the best and hoping your biopsy results are favorable.


----------



## luvmarypoppins

Neck sono for me on Monday.

Yippe I get to go back to Ms. Not So Friendly, all business, my name is G etc.

Um, she is the only one who does sonos at the place. guess she cant remember us, but then she should remember me.

I wish the sono girl at the hosp. was not on maternity leave, sigh.

I think I will do the blood test on Friday as I am thinking of going to see my aunt over MLK week end. 

Pelvic sono on the 19th. Dont want to hear any bad news

Endo visit on the 23rd I think.

Oh and since my dh is gong to China today and taking 2 of the ds to New Zealand in March (that is free with ff miles, thank heavens). I asked him, do you think we could have a little Food and Wine Festival getaway (as we have never been). He said yes. Yippee!! I hope it will work out. I want t use the frequent flyer miles to book the Swan for free etc.

Christine - I have to read your thread on the cb about your ds. I know ds#1 figured out by soph year in college what he wanted to do, ds#2 is following in dh footsteps although he is less than thrilled about it and only has a 2.97 gpa and its not the same major as dh but an easier one. And ds#3 is just about there . He is a soph in college and wanted to do pt, but is a psych major, only did that to get into the state college and now he is applying to nursing schools. He actually had a part time job in the physical therapy office and thought it was boring. So maybe some job shadowing or volunteering etc. 

Micayla - hope things are going well, you know what I mean. Did you ever find that jacket for your niece? You are a great aunt. My sis was always like that with the ds. Gosh, I miss her. 

Well have a good week end everyone.


----------



## dischick4778

karajeboo said:


> Thank you Lauren for directing me over here!!!
> 
> I'm having a partial thyroidectomy on Jan 25.  I need advice!!!!  I have a 2mm nodule that came back with "suspicious" cells in a needle biopsy.  The kind of cells that if cancer will never show up in a needle biopsy.  The pathologist said 15-32% chance that they are cancerous.  So......
> 
> My entire right lobe will be removed.  Dr said that IF the biopsy comes back as cancer, then they will remove the rest of the thyroid, then put me into a hypothyroid state (or hyper, don't really know the particulars at this point!), then do the radioactive iodine after 4-6 weeks......
> 
> Here's my concern (aside from the obvious health concerns!!!!) - I have a Disney cruise scheduled for March 30!  So I'm praying for the best, but semi-planning for the worst news.....  I mean, I'm sure we'd have to cancel the March 30th cruise, but then the DISmoms cruise is May 6.... that may be doable, but I just don't know.
> 
> How long does the surgery last for just partial thyroidectomy?  I have my mother coming to stay with us for 5 days, just so the household can run normally.  The dr has scheduled me for one night in the hospital, so if my mom is here then DH won't have to take time off work, other than the day of surgery and the day after to bring me home.....
> 
> I'm thinking the first couple days are uncomfortable, but a fairly quick recovery?
> 
> My other big concern... I've NEVER had any kind of surgery before!!!!
> 
> OK, folks, time to ease this DISmama's fears!!!  Let's hear it!



Best of luck and wishing for you that it is not cancer.  Worst case, if it is, you  will be healed by May.  The surgery timing all depends on what they find once they get started.  They told my DH it would be 2-3 hours, but after they started and realized how many cancer tumors there were and how they were all wrapped around my vocal cords it ended up being a 6 hour surgery.

Recovery was tough but I was not given any meds to help, I was tired all the time.  If you need radioactive iodine you might need a place to stay depending on the dose.  My dose was pretty high and I had to be "quarantined" for a week.  Not sure this would be an issue for you though.

I completely understand how you feel about your trips as well.  I found out about my cancer about a month before we were set to go to Disney.  I tried to convince the Dr to let me go and have the procedure when I returned.  I was so desperate to enjoy myself and not have cancer surgery.  In the end we canceled the trip.  That part of it was honestly the worst for me.  It's so emotional.

Best of luck again and please ask any questions you have here.  There are so many knowledgeable and helpful people.


----------



## Apopper74

Just happened upon this thread & I just thought it was too much of a coincidence to not ask.
On Dec 27, my gyn noticed a slight enlargement of my thyroid during a well visit and ordered a ultrsound of my neck.  I was actually surprised by this observation because I have a skinny neck & it is not obvious.  The following Friday, 12/30, I went for the ultrasound and this past Tuesday the Dr (actually the nurse)called me with the news that I have a 4mm Thyroid nodule and they want me to see an Endo.  Nurse was not helpful with questions, the Dr really should have been the one to call.  Regardless I go for the TSH test tomorrow morning & my appointment with the endo is scheduled for 1/23.  Anything in particular I should be prepared for at the appointment?

Really surprised by all this.  While I am slightly overweight, it's not a surprise since after my son I became lazy in choosing healthier snack options )and exercising.  What's even more surprising is I started dieting just a week before the Gyn appointment (during X-mas I know I am crazy) and had lost 5 lbs the first week, 3 lbs the second and 2 lbs for the 3rd week for a total of 10 lbs.  A little surprised the weight is coming off as it is, but prior to my son I was healthy and exercised regularly so I attribute this to body memory and cutting out refined sugars.  I feel that both my weight gain & loss is explainable.  Anyone else have similar experience?  Should I be concerned?  If they want to do a needle biopsy will it be done in the office or is this a special outpatient procedure?  A little scared but also rationalizing this to not.

Thank you in advance.


----------



## mrsklamc

Wow I just realized I missed a bunch of posts somehow, sorry everyone!

LMP- I my sister ended up finding the right jacket, but I was the hero on finding a leappad for one of the almost 4 year old (leap day!) twins! No news on the other front yet but will keep you posted. WOW! New Zealand on FF miles! I know your DH goes to Asia a lot but wow. What a great perk. Also I figured our next DW trip would be 2015 or so but we are now looking at 2013- depends on our news on that other front, but so far, there isn't any news.


----------



## mrsklamc

karajeboo said:


> Yes, there were 4 possible outcomes from the needle biopsy: 1) definite cancer cells, 2: definite NO cancer cells, then 3 and 4 are two different types of cells, follicular and papillary and I was told neither one would show up in a needle biopsy.  They just come back as "suspicious" and will only show clearly in a full biopsy.



Now that you say that, I had both follicular and papillary, one they knew ahead of time and the other was in the post surgical biopsy. 

I did not comment specifically on surgery or recovery time because mine was known to have spread to my neck and that increased both my surgery and recovery time greatly.


----------



## mrsklamc

Apopper74 said:


> Just happened upon this thread & I just thought it was too much of a coincidence to not ask.
> On Dec 27, my gyn noticed a slight enlargement of my thyroid during a well visit and ordered a ultrsound of my neck.  I was actually surprised by this observation because I have a skinny neck & it is not obvious.  The following Friday, 12/30, I went for the ultrasound and this past Tuesday the Dr (actually the nurse)called me with the news that I have a 4mm Thyroid nodule and they want me to see an Endo.  Nurse was not helpful with questions, the Dr really should have been the one to call.  Regardless I go for the TSH test tomorrow morning & my appointment with the endo is scheduled for 1/23.  Anything in particular I should be prepared for at the appointment?
> 
> Really surprised by all this.  While I am slightly overweight, it's not a surprise since after my son I became lazy in choosing healthier snack options )and exercising.  What's even more surprising is I started dieting just a week before the Gyn appointment (during X-mas I know I am crazy) and had lost 5 lbs the first week, 3 lbs the second and 2 lbs for the 3rd week for a total of 10 lbs.  A little surprised the weight is coming off as it is, but prior to my son I was healthy and exercised regularly so I attribute this to body memory and cutting out refined sugars.  I feel that both my weight gain & loss is explainable.  Anyone else have similar experience?  Should I be concerned?  If they want to do a needle biopsy will it be done in the office or is this a special outpatient procedure?  A little scared but also rationalizing this to not.
> 
> Thank you in advance.



My thyroid hormones were totally normal even w/ the cancer so your weight loss/gain may be totally normal. Of course, lots of people have nodules without cancer so don't jump to that yet.Statistically, it is unlikely you have cancer. 
I also had neck swelling observed during a visit for something else, and my neck swelling was also hard to see. Some medical professionals just have an eye for it. 
One thing I've learned on this thread is that treatment experiences vary greatly, but my fine needle biopsy was at a diagnostic center. They just do medical imagining there, but yeah, it's an outpatient procedure.


----------



## luvmarypoppins

Apopper - welcome

Its good you are going for the blood test. That is also a good indication of what is going on.

I did lose alot of weight before my diagnosis.

Make sure the endo is someone you like, because they may want to keep an eye on you etc. 

If you have to do a biopsy it depends. My endo does them herself. That is one of the reasons why I picked her. But I never have had her do one.

I always go to my ENT surgeon. I had 2 tumors one in the thyroid and one on the L side of my neck, so I got the double whammy biopsy and since they couldnt get enough cells they did it again. Oh what fun!!

The worst part would be if you get a dr. who thinks they dont have enough cells for the sample and then they "shake up" your neck as they call it. Not fun but does not last long thank heavens.

Its not as bad as it seems. They give you a lidocaine numbing shot first. 

Glad they are on top of things and covering all their bases with you.

Wishing you all the best.


----------



## mrsklamc

I'd compare the biopsy to the dentist - doesn't hurt cause you are numbed up but just someone poking around is kinda annoying.


----------



## karajeboo

Apopper74 said:


> Just happened upon this thread & I just thought it was too much of a coincidence to not ask.
> On Dec 27, my gyn noticed a slight enlargement of my thyroid during a well visit and ordered a ultrsound of my neck.  I was actually surprised by this observation because I have a skinny neck & it is not obvious.  The following Friday, 12/30, I went for the ultrasound and this past Tuesday the Dr (actually the nurse)called me with the news that I have a 4mm Thyroid nodule and they want me to see an Endo.  Nurse was not helpful with questions, the Dr really should have been the one to call.  Regardless I go for the TSH test tomorrow morning & my appointment with the endo is scheduled for 1/23.  Anything in particular I should be prepared for at the appointment?
> 
> Really surprised by all this.  While I am slightly overweight, it's not a surprise since after my son I became lazy in choosing healthier snack options )and exercising.  What's even more surprising is I started dieting just a week before the Gyn appointment (during X-mas I know I am crazy) and had lost 5 lbs the first week, 3 lbs the second and 2 lbs for the 3rd week for a total of 10 lbs.  A little surprised the weight is coming off as it is, but prior to my son I was healthy and exercised regularly so I attribute this to body memory and cutting out refined sugars.  I feel that both my weight gain & loss is explainable.  Anyone else have similar experience?  Should I be concerned?  *If they want to do a needle biopsy will it be done in the office or is this a special outpatient procedure?  A little scared but also rationalizing this to not.*
> 
> Thank you in advance.



Just had the needle biopsy done the week before Christmas so it's fresh in my mind.  I was a basket case going into it....  Mine was done with ultrasound in the hospital.  I had to wait 2 1/2 hrs because it was the week before Christmas and they were short staffed - I knew this going in but what a pain! 

The procedure, from the time the dr walked in until I walked out was no more than 10-15 minutes.  They numbed me first - then the teeny tiny needles they used for the biopsy (they did 4 sticks) were barely felt.  Dr told me not to swallow, he stuck it in, wiggled it around, and pulled out - probably 10-15 seconds each time.  A little pressure but no pain at all.  They ran another ultrasound afterwards to make sure there was no bleeding, I got up and walked out.  Some doctors will make you wait 30 minutes and then do another ultrasound to check for bleeding, but I was outta there!

This was Dec 23 so I had stuff to do this day and I was fine.  A little tenderness and bruising but nothing that a little tylenol couldn't fix....

Good luck!


----------



## Apopper74

Karajeboo, MrsKlamc & LUVMaryPoppins,
Thanks for sharing your experiences & advice.  This is was not on my list of things to do, but I guess it is now.  At least I am a positve person so I am looking at everything in the positve so I haven't been dwelling too much but it is in my thoughts.  All I want at this point is Disney in May.

Thank you again,
Adrienne


----------



## luvmarypoppins

Well I went for the sono today. It was a new tech and she asked me, why are they doing this again so soon? I told her I have a very aggressive variant, columnar cell. She said , o.k. I was going to tell her I asked the dr. and she said it was ok to do it twice a year etc.

They didnt do any more pictures, so I am hoping for the best. 

I am going for the blood test on wed. I had to do it earlier.

There are alot of things going on with my family right now and some are not very good. Please say a prayer. Thanks.


----------



## Christine

luvmarypoppins said:


> Well I went for the sono today. It was a new tech and she asked me, why are they doing this again so soon? I told her I have a very aggressive variant, columnar cell. She said , o.k. I was going to tell her I asked the dr. and she said it was ok to do it twice a year etc.
> 
> They didnt do any more pictures, so I am hoping for the best.
> 
> I am going for the blood test on wed. I had to do it earlier.
> 
> There are alot of things going on with my family right now and some are not very good. Please say a prayer. Thanks.



Hope everything get better for you soon.

I had my neck ultrasound on Saturday.  The endo hasn't called me with the results yet but the tech did tell me that she didn't see anything abnormal.  So I'm feeling okay on that.

My DEXA scan results came back normal so that was good.  Between the long term thyroid hormone use, the long term Prilosec use, and a family history of osteopenia I was a tad worried.

Next week it's the gyno and mammogram. YAY.  I love getting older.

On that note, getting older does really stink but it's better than the alternative as they say.  Everyday, something on me hurts.  Be it my knee, my elbow, my neck, my back.  Then there's some newly arising issues that I am SURE are due to starting perimenopause.  Uuuuggggghhhhhhh....I want my young body back.


----------



## kimmie

I know exactly what you mean Christine!  I am 52 and feel...very old.  My knees are giving me a lot of trouble right now.  Really hard to lose weight.

Wondering what it feels like to be hyper instead of hypo?
i am having some issues again and can't slow myself down!  No heart palps though.
Thanks!


----------



## mrsklamc

luvmarypoppins said:


> There are alot of things going on with my family right now and some are not very good. Please say a prayer. Thanks.



You bet. 


Christine said:


> On that note, getting older does really stink but it's better than the alternative as they say.  Everyday, something on me hurts.  Be it my knee, my elbow, my neck, my back.  Then there's some newly arising issues that I am SURE are due to starting perimenopause.  Uuuuggggghhhhhhh....I want my young body back.



Yeah since I was 29 sometimes I wonder what's aging and what's radiation when it comes to my memory flaking out on me.



kimmie said:


> Wondering what it feels like to be hyper instead of hypo?
> i am having some issues again and can't slow myself down!  No heart palps though.



It varies...hyper makes me super tired but unable to sleep. Also tend to want to eat often.


----------



## kimmie

It varies...hyper makes me super tired but unable to sleep. Also tend to want to eat often.[/QUOTE]

Thanks.  I do not want to call the endo again.  She is trying but I am not sure we are on the same page


----------



## mrsklamc

kimmie said:


> It varies...hyper makes me super tired but unable to sleep. Also tend to want to eat often.



Thanks.  I do not want to call the endo again.  She is trying but I am not sure we are on the same page[/QUOTE]

That is SO frustrating. My first endo was like that. My new one is such a gift, she became an endo because she had thyroid cancer at 23, so she knows exactly what it's like.


----------



## kimmie

That's what I find frustrating in the "thyroid world".  The doctors do not know how much synthroid to give a patient so they "try" different doses until they happen upon the right dose.  Why?  In the mean time you are either crazy, sleepy, fat, angry....the list goes on.  I am amazed at how much the do not know!

Sorry for another rant but I want to be who I was 4 months ago, and I know that is not possible.


----------



## mrsklamc

Rant away; We've all been there. 

And, really, that happens even with my doctor who knows what's going on; it just takes time for your hormones to level out to new doses and if that's not right they have to try again, etc. Plus, I'll get leveled out and then thyrogen messes with my levels. 

My GUESS is that not as much money goes to thyroid cancer research because it tends to be less lethal than other cancers; but that's just a guess.


----------



## kimmie

mrsklamc said:


> Rant away; We've all been there.
> 
> And, really, that happens even with my doctor who knows what's going on; it just takes time for your hormones to level out to new doses and if that's not right they have to try again, etc. Plus, I'll get leveled out and then thyrogen messes with my levels.
> 
> My GUESS is that not as much money goes to thyroid cancer research because it tends to be less lethal than other cancers; but that's just a guess.



Thanks!  I think you are right.  Its just a very important gland with hormones that you REALLY need.


----------



## luvmarypoppins

Went for the blood test today. My endo appt. is on the 23rd. Now I have the wonderful pelvic sono on Thurs.  Then maybe will have to schedule the kidney sono.

kimmie - I can relate too. Its frustrating when you dont feel well and they are trying to adjust the meds. I had 3 adjustments. I think I went from 150 to 200, and 200 was really making me crazy. Now I am at 175. I feel alot less crazy.  My endo will not lower it anymore she said until I think I am at the 5 year mark since mine is aggressive etc. So I just have to put up with it.  Hang in there. They will find the best level for you. Just keep telling the endo your symptoms etc. 

Christine - good your bone scan came out well. I dont know if I have to do them anymore since I am getting the yearly reclast infusion. Hope your drs. visit and testing goes well.

Well with everything going on I dont even know if we will be able to take our May trip. If we do we might have to cancel the bounceback rate and maybe just pay for a rack rate room with frequent flier miles. I have to check out all the financial stuff.


----------



## luvmarypoppins

Well I just saw that the 2012 Thyca conference is going to be in Chicago. 

Micayla is that really far away from you and maybe Kimmie that might be close to you to go to?

I have never been to Chicago but sometimes dh has gone there on business trips. 

We need an Orlando thyca conference!!


----------



## mrsklamc

Chicago is not far - I will have to go look and see when it is.


----------



## kimmie

luvmarypoppins said:


> Well I just saw that the 2012 Thyca conference is going to be in Chicago.
> 
> Micayla is that really far away from you and maybe Kimmie that might be close to you to go to?
> 
> I have never been to Chicago but sometimes dh has gone there on business trips.
> 
> We need an Orlando thyca conference!!



Thanks for the reminder!  I am about an hour out of Chicago!  I will go and check the dates and stuff 
I am very interested in going...anyone want to join me?

Hey if they have one in Orlnado, sign me up for that one!  It would be nice to get out of the cold for awhile.  The snow is coming down like crazy today!


----------



## luvmarypoppins

Anyone see the little article about thyroid stuff that was in the newspaper magazine. Forgot the name, but it was about thyroid stuff, not necessarily cancer.

They did say that not all thyroid goiters are cancerous, yeah right, mine was though. 

Oh well, any press is good press to me. I actually saw they expect the newly diagnosed to increase steadily this year (read that somewhere else).   Hope they can say one day..more patients and so we need more research etc. 

I have not been eating or sleeping well due to the personal family problem. Also between the hot flashes and the other night my heart seemed to be racing too long, usually that does not happen often.    I am sure even the endo will think I am a mess next week, we shall see.


----------



## dischick4778

kimmie said:


> Sorry for another rant but I want to be who I was 4 months ago, and I know that is not possible.



I feel like I say this very same thing all the time!  I used to be such a calm, level-headed, reasonable, sweet person.   Now I feel like I'm in someone else's personality and I cannot get out! 

The new lower dose, 188, is starting to take effect but it is a slow process.  I have noticed a bit more patience with things that I would have screamed about a month ago.  But I am still not "me".  Hmm, how long until I get used to the new me?mm

Stay well all!


----------



## karajeboo

Wait a minute.... so the thyroid affects personality?  I've noticed over the years that I've turned psycho, seriously.  I fly off the handle over the least little thing, and my husband told me over the weekend that I'm not the most pleasant person to be around!  That, and the racing heart.....  In fact, my dr started checking my thyroid when I was complaining of a racing heart, and the stress test came back normal.... that's when the nodule was found.  So it's possible that my moods could level out after this nodule is removed?????


----------



## kimmie

dischick - I was a happy person until all of this too!  I am better now, but I now take Lexapro
I am better now because things are starting to level off.  Weight is still an issue with me.

karajeboo - I hope things are better for you once they remove the nodule.  The thyroid is an amazing thing and DOES control hormones. 
I am still very new to all of this but the others here can give you more insight.


----------



## Christine

I tried to post earlier but it got lost in space somehow.

If your nodule is affecting your thyroid hormones, then certainly your mood will be affected.  If not, it is probably something else.


----------



## dischick4778

karajeboo said:


> Wait a minute.... so the thyroid affects personality?  I've noticed over the years that I've turned psycho, seriously.  I fly off the handle over the least little thing, and my husband told me over the weekend that I'm not the most pleasant person to be around!  That, and the racing heart.....  In fact, my dr started checking my thyroid when I was complaining of a racing heart, and the stress test came back normal.... that's when the nodule was found.  So it's possible that my moods could level out after this nodule is removed?????



Thyroid definitely impacts your personality.  And depending on your synthroid dose after surgery that is a huge thing too.  I was on such a high dose bc of the extent of my cancer situation that I was nervous and anxious and angry all the time - which is very unlike me.  Now I am at a lower dose and finally feeling a bit normal, but man it has been a rough couple of years.

And I do feel badly for my husband bc I am not the person he married.  And I know for better or worse, but no one expects the worse to come so soon.  He is a saint for dealing with me through all of this.  And I just want to be me again.


----------



## karajeboo

dischick4778 said:


> Thyroid definitely impacts your personality.  And depending on your synthroid dose after surgery that is a huge thing too.  I was on such a high dose bc of the extent of my cancer situation that I was nervous and anxious and angry all the time - which is very unlike me.  Now I am at a lower dose and finally feeling a bit normal, but man it has been a rough couple of years.
> 
> And I do feel badly for my husband bc I am not the person he married.  And I know for better or worse, but no one expects the worse to come so soon.  He is a saint for dealing with me through all of this.  And I just want to be me again.



Thanks everyone for the great info!  I have my preop visit on Thursday so I hope to get a lot more info then, but I'm curious, will I be on meds with them only removing part of my thyroid?  I was under the impression that the thyroid can "catch up" if part of it remains?

I am so sorry to hear of everyone's situations, but this is such a positive thread and I thank you all for posting your stories!  It really makes me (and I'm sure many others!) feel better and have a much more positive outlook!


----------



## Christine

karajeboo said:


> Thanks everyone for the great info!  I have my preop visit on Thursday so I hope to get a lot more info then, but I'm curious, will I be on meds with them only removing part of my thyroid?  I was under the impression that the thyroid can "catch up" if part of it remains?
> 
> I am so sorry to hear of everyone's situations, but this is such a positive thread and I thank you all for posting your stories!  It really makes me (and I'm sure many others!) feel better and have a much more positive outlook!



Yes, half or part of your thyroid can do the work of a whole thyroid gland.  They will probably want to monitor you very carefully after having part of it out to make sure that it's picking up the slack.


----------



## lovemygoofy

Hi everyone! I haven't been around in a long time. My life is so screwy I should have my own reality show.

I have a question for thyroid people in the know please. Can thyroid medicine just stop working or maybe having the opposite effect. I'm now up to 50mcg and I feel crazy again. My heart races, bad hot flashes, face flushes, my hair is falling out enough to make a curly haired wig, my sex drive is back down, and now my blood pressure is on the rise.

I googled synthroid and high blood pressure and got some interesting responses but wanted information from someone in the know.

I have made an apt with my PCM because the reproductive endo and I have parted ways. I'm moving in less than 8 weeks and know that can cause stress but I just feel like something is wrong. 

Any help would be most appreciated. Thanks for letting me jump back in for guidance.


----------



## mrsklamc

Tina- Yes, it definitely sounds like your levels need to be adjusted.

Just curious- has anyone noticed a seasonal affect on your levels? Mine has been lowered the last two Januarys- I blamed the thyrogen but I'm feeling kinda hyper-ish and I haven't had it this year.

There was an article in the local paper Sunday that mentioned how thyca is the 'good' kind of cancer to get. Boy did that Dr get ripped in the comments with people letting him know just how 'good' it is....


----------



## Christine

> I have a question for thyroid people in the know please. Can thyroid medicine just stop working or maybe having the opposite effect. I'm now up to 50mcg and I feel crazy again. My heart races, bad hot flashes, face flushes, my hair is falling out enough to make a curly haired wig, my sex drive is back down, and now my blood pressure is on the rise.



Too much and too little thyroid hormone can often have overlapping/shared effects.  Based on your heart racing, bad hot flashes, face flusing, and increased BP, I'm going to go with the thought that you have too much thyroid hormone.

Too little OR too much can cause hair loss, changes in sex drive.  It's possible that being hypo could cause increased BP, but most often it goes the other way.  With too little hormone you get bradycardia (slow heartbeat) which can often help BP levels.  But having too little thyroid hormone also stresses the body so it could increase it.

If I were a betting woman, I'd go with too much hormone.

Tina--you're in the rotten position of still having your own (malfunctioning) thyroid gland that, on most days probably isn't working well enough for you but then periodically it might start working.  When you are dealing with both a thyroid gland and supplementation, you get these problems.  Many of us here have totally dead thyroid glands or none at all, so the supplementation process isn't quite the rollercoaster ride that people with funky thyroids get.  

You probably need to get a quick thyroid panel done just to see where you are.  Many, many years ago when I was first dealing with this, my biggest clue of too much thyroid hormone was my flushed face (and ears).  It was awful.  If the room even got the slightest bit warm, I had a face like a fire engine.  Bumping down a dose helped immensely.




> I have made an apt with my PCM because the reproductive endo and I have parted ways. I'm moving in less than 8 weeks and know that can cause stress but I just feel like something is wrong.



Sorry to hear you no longer have the reproductive endo--that sounded so promising.  

Get thee to a doc and have that TSH done. You'll feel much better when you get this under control.


----------



## luvmarypoppins

Tina - I am so sorry you are going all through this again

As the others have said, def. go and get a new blood test for sure.

Sorry to hear that you and the repro. endo were not on the same page about things. Hopefully you can find a new one after you move. Have you checked out those that are associated with a teaching hospital.   

I know even when my own endo didnt know what to do about my bp problems, she honestly admitted to me that she shared my case with another endo since its a teaching hosp. and its a large staff etc.  The other dr. told her to add a different bp med to the one I already take.

So in your case also it might help if there is more than one dr. looking at you, maybe a team or dept. etc. Wishing you all the best.

Just wondering if you are taking the name brand synthroid or a generic?

Also when everyone says face flushing, just wondring if its full blown face flushing etc.  I always had my reg. md say I had rosacea etc. 

Well I went for the sono today. They found nothing wrong except for a small fibroid they said. I asked why I had all these problems etc. They said sometimes peoples bodys just go crazy, as in getting cramping and bleeding 3 years after the tt which threw me into medical menopause as they call it. 

So PTL, so far so good and I didnt have to hear the word cancer again.

Mon. is my endo visit.


----------



## luvmarypoppins

mrsklamc said:


> There was an article in the local paper Sunday that mentioned how thyca is the 'good' kind of cancer to get. Boy did that Dr get ripped in the comments with people letting him know just how 'good' it is....



Did you comment too Micayla?  I know that is such a topic on thyca.org I too would like to give people a piece of my mind and actually can you believe the person at the rad. onc. when I made my first appt., said to me:  "You know you arent as sick as some of the other people we have here". Yeah, gee thanks. So I guess my coma and almost dying post op didnt count right?  Honestly this lady had a son in one of my ds grade school classes so I didnt say anything. If it was anyone else they would have gotten an earful from me.

People who say things like that really irritate me!!


----------



## 3prettyprincesses

Hello ladies,

I am looking for a bit of advice and support.  My thyroid has been plaguing my life for the last eight years.  It all started after I had my last DD and I went severely hyperthyroid (post-partum thyroiditis).  Well, then began the roller coaster of crap as I like to call it.  My levels have swung back and forth till finally it settled on permanently hypothyroid.  My meds used to be 139 mg of levoxyl and now I'm down to 112 because I was having hyper symptoms again this past summer.  

The last few months I feel even more hyper.  I can't sleep, my heart races, multiple bowel movements (including d.), I'm hot all the time and my periods are very light which is abnormal for me.  Last time I had my TSH, FT3 and FT4 checked, I was borderline hyper but my doctor felt that if he lowered my dose, I'd swing hypo.  I'm miserable, weepy and trying to hold myself together.  

My question is this:  Can some of you who still have thyroid glands and are taking levoxyl or synthroid describe your symptoms of hyper?  My doctor seems really hesitant and is kind of disregarding my symptoms.  I had bloodwork yesterday and am awaiting results.  Thank you so much for your time and this thread.


----------



## mrsklamc

luvmarypoppins said:


> Did you comment too Micayla?  I know that is such a topic on thyca.org I too would like to give people a piece of my mind and actually can you believe the person at the rad. onc. when I made my first appt., said to me:  "You know you arent as sick as some of the other people we have here". Yeah, gee thanks. So I guess my coma and almost dying post op didnt count right?  Honestly this lady had a son in one of my ds grade school classes so I didnt say anything. If it was anyone else they would have gotten an earful from me.
> 
> People who say things like that really irritate me!!



Actually since it had been thoroughly covered I commented on the fact that the article said you could have part of your thyroid removed if you had been diagnosed & that's no longer considered appropriate treatment.


----------



## mrsklamc

3prettyprincesses said:


> I can't sleep, my heart races, multiple bowel movements (including d.), I'm hot all the time and my periods are very light which is abnormal for me.  Last time I had my TSH, FT3 and FT4 checked, I was borderline hyper but my doctor felt that if he lowered my dose, I'd swing hypo.  I'm miserable, weepy and trying to hold myself together.
> 
> My question is this:  Can some of you who still have thyroid glands and are taking levoxyl or synthroid describe your symptoms of hyper?  My doctor



What you describe plus I'm always tired but can't sleep, and I have anger issues....

A start would be switching to synthroid rather than levoxyl. This is the one med where, yes, generics have to be within a very small window of active ingredients, but our bodies are sensitive enough to thyroid hormones that 'extremely close' isn't good enough.


----------



## Christine

mrsklamc said:


> What you describe plus I'm always tired but can't sleep, and I have anger issues....
> 
> A start would be switching to synthroid rather than levoxyl. This is the one med where, yes, generics have to be within a very small window of active ingredients, but our bodies are sensitive enough to thyroid hormones that 'extremely close' isn't good enough.



Just wanted to say, Levoxyl isn't a generic.  It is often priced as low as a generic but it is not a generic.  I've been using it for over 5 years now when I became sensitive to a filler in Synthroid (povidone).  I TSH is *slightly* higher on the same dose of Levoxyl as it was on Synthroid.  Instead of always being at 0.3, it hovers at 0.5 on the same dosage.


----------



## mrsklamc

Christine said:


> Just wanted to say, Levoxyl isn't a generic.  It is often priced as low as a generic but it is not a generic.  I've been using it for over 5 years now when I became sensitive to a filler in Synthroid (povidone).  I TSH is *slightly* higher on the same dose of Levoxyl as it was on Synthroid.  Instead of always being at 0.3, it hovers at 0.5 on the same dosage.



I did not know that! I wonder if my endo would let me switch.


----------



## kimmie

Levothyroxine is the generic, not Levoxyl, right?
I cannot take levothyroxine.  As mrsklamc stated, my body is just too sensitive to the generic dosage.


----------



## luvmarypoppins

Just curious, does anyone celebrate their cancerversary??

I got the idea from the breast cancer sistas.

Mine will be a week from tomm.

The other year the one ds made me a cake to celebrate.

I usually say the day is the date I had my surgery to get these tumors out etc.

Some people say its when treatment is over etc.

I dont do anything special to celebrate etc. I just feel that me acknowledging it makes me deal with it better etc.


----------



## Christine

mrsklamc said:


> I did not know that! I wonder if my endo would let me switch.



Your endo should be happy with you on any of the brand names:  Synthroid, Levoxyl, Levothroid, Tirosint, to name a few.  All brand names, all proven effective, and they won't vary month to month.

I actually started out on Levothroid because they made a dose that Synthroid didn't.  Levothroid was also $10 per month cheaper for me.  Then Levothroid went up in price and, somehow I got on Synthroid.  I don't know why.  But I took that for years.  Once I discovered I had a sensitivity to povidone and it was in my Synthroid, I looked for a thyroid med that didn't have it.  That was Levoxyl.  And it runs me $10 per month on my insurance or $20 for a 90-day supply.


----------



## Christine

luvmarypoppins said:


> Just curious, does anyone celebrate their cancerversary??
> 
> I got the idea from the breast cancer sistas.
> 
> Mine will be a week from tomm.
> 
> The other year the one ds made me a cake to celebrate.
> 
> I usually say the day is the date I had my surgery to get these tumors out etc.
> 
> Some people say its when treatment is over etc.
> 
> I dont do anything special to celebrate etc. I just feel that me acknowledging it makes me deal with it better etc.



Not really.  I'm not even sure what day I would choose.  Usually when August passes I say to myself "another year goes by without a recurrence."  August is the month I had surgery to remove it all.


----------



## kimmie

Hey Christine what actually was your sensitivity to the povidone? (If you don't mind me asking)


----------



## Christine

kimmie said:


> Hey Christine what actually was your sensitivity to the povidone? (If you don't mind me asking)



Well, it took me awhile to figure out it was povidone but here's the story:

I used to take ibuprofen all the time for menstrual cramps, aches and pains, etc.  In fact, I'm sure I abused.  Anyway, one day after I took it, about 20 minutes later, I gut an itchy hive on my chest.  I didn't think much of it.  Figured it might have come from playing with the dog.  Then I started to notice that it happened EVERY time I took ibuprofen.  So I figured I was allergic to iboprofen and I switched to extra-strength Tylenol.  I was fine for a bit on Tylenol but even then I started to get the hive.  It was always somewhere on my chest.  Occasionally I would get one on my back right at the same level as the one on my chest.  It was also only be one singulary, very itchy hive and would disappear in about two hours.  

At this point I was getting suspicious but still didn't know what to do.  On top of all that, my chest was kind of breaking out all the time and splotchy.  I tend to be that way anyway so didn't make much of it.  

Then my doctor prescribed Feosol, an iron supplement.  I took this and I got a HUGE, and I mean HUGE, hive on my chest.  I then realized that I could not be allergic to all of these things.  So I made up a spreadsheet of everything thing I took and tried to find the commonality in the meds that caused the hive.  The most glaring one was povidone.  What threw me is that Synthroid and Sudafed also contain it, yet, I was not having big hives with either of them.  After talking to my doctor, he said that it could be a "threshold" thing.  Synthroid and Sudafed probably have tiny amounts.  Feosol probably has a large amount, and ibuprofen and Extra Strength Tylenol have moderate amounts.  But there's no way to tell.  I stopped all the other meds with the exception of Synthroid and Sudafed (as needed).   I was able to tolerate Children's Liquid Motrin and Regular Strength Tylenol as neither have povidone.  I still had a slight, rashy look even after stopping things so I stopped the Synthroid and went to Levoxyl.  I still get rashy occasionally, but not like I was.  I will occasionally use Sudafed if I have a bad cold and I seem to be okay with it.


----------



## kimmie

Thanks Christine!  Sorry you had to go through all of that.

I am having some trouble with facial ticks towards the end of the day sometimes.  My right eye to be specific.  I keep twitching it closed.  If I make sure I am aware of it I can stop doing it!  Really strange.

Anyone have this happen?  Or muscle contractions?  I find myself all tensed up sometimes.


----------



## Christine

kimmie said:


> Thanks Christine!  Sorry you had to go through all of that.
> 
> I am having some trouble with facial ticks towards the end of the day sometimes.  My right eye to be specific.  I keep twitching it closed.  If I make sure I am aware of it I can stop doing it!  Really strange.
> 
> Anyone have this happen?  Or muscle contractions?  I find myself all tensed up sometimes.



Are your calcium levels okay?  I think low serum calcium will cause this (damage to parathyroids more specifically).


----------



## mrsklamc

Christine said:


> Your endo should be happy with you on any of the brand names:  Synthroid, Levoxyl, Levothroid, Tirosint, to name a few.  All brand names, all proven effective, and they won't vary month to month.
> 
> I actually started out on Levothroid because they made a dose that Synthroid didn't.  Levothroid was also $10 per month cheaper for me.  Then Levothroid went up in price and, somehow I got on Synthroid.  I don't know why.  But I took that for years.  Once I discovered I had a sensitivity to povidone and it was in my Synthroid, I looked for a thyroid med that didn't have it.  That was Levoxyl.  And it runs me $10 per month on my insurance or $20 for a 90-day supply.



Good to know....we are still TTC though so for right now I will probably stay on the Synthroid just so I am minimizing TSH changes that are under my control.


----------



## kimmie

Christine said:


> Are your calcium levels okay?  I think low serum calcium will cause this (damage to parathyroids more specifically).



Yes my calcium levels were ok.  When he removed my thyroid he was very careful with the parathyroids and said they looked pretty good.

I go back to the endo next month, so I will be sure to ask her.

last blood work on 12/14 was:

CA (calcium) 9.4 (8.4 - 10.6)
TSH .056 (.03 - 4.00)
Free T4 1.23  (.71 - 1.85) 
Free T3 3.1  (2.4 - 4.2)

Do these seem ok?  The doctor seems to think so.


----------



## Christine

kimmie said:


> Yes my calcium levels were ok.  When he removed my thyroid he was very careful with the parathyroids and said they looked pretty good.
> 
> I go back to the endo next month, so I will be sure to ask her.
> 
> last blood work on 12/14 was:
> 
> CA (calcium) 9.4 (8.4 - 10.6)
> TSH .056 (.03 - 4.00)
> Free T4 1.23  (.71 - 1.85)
> Free T3 3.1  (2.4 - 4.2)
> 
> Do these seem ok?  The doctor seems to think so.



Yes, they seem really good.  Is your lab range really .03 - 4.00?  Mine runs 0.3-4.00.  If your range is really 0.3-4.00 and your TSH is .056, then you could be dealing with a hyperthyroid issue which could explain the symptoms.


----------



## kimmie

Oh, you are right.  It reads .3 - 4.0. 
My TSH is .56.
Oops!


----------



## luvmarypoppins

Back from the endo.

I think I got some of the numbers wrong because it was just crazy busy there and I had a resident on top of that too.

The endo said my sono was great and my bp was great too 128/70, so the new med is really working well.

She said my labs were great too. She said my Tg was less than 0.2 so that is undetectable. (I hope I have that number right) and then she said that my tsh is .05. This is where I cant remember. It could have been .5. But she said that I am still too hyper and since all my testing has been coming out good, she has to balance out the high synthroid dose with the heart palpatations and worse the osteoporosis, since the high dose ruins your bones, which in my case it probably is doing due to the dexa scan and already getting one reclast infusion. She said she wants to get the tsh down to 0 too??

So she is lowering my synthroid to 150. I have to get a blood test in 6 weeks. She said dont throw out your old synthroid yet, because we might have to sub the higher dose a day or two a week etc. Its a balancing act she has to work n but she said she will work on it etc.

I did ask her if she had any other patients with columnar cell variant. and she said she had a few, but they only have really small, small tumors. She said, yours by far is the biggest one I have (12.5 plus the other 4 cm one.) I joked and said, well I guess its good to be remembered for something.

She commented - Oh I knew you were going to do really well?? Hmm, the rad onc. never even said anything like that to me, not once ever. Of course the surgeon never said anything all that much, especially since he almost killed me. 

Dh said, she said, well its been almost 4 yeas. I honestly didnt hear her say that, but its really only almost 3 etc.

So we shall see how this all works out, but I am praising God for the good news. With everything else that is not going well with our family, I sure could use that good news, its like a ray of sunshine

Dh said, lets go out to dinner to celebrate.


----------



## kimmie

luvmarypoppins


----------



## Christine

luvmarypoppins--that's great news!


----------



## mrsklamc

Has anyone ever taken cisplatin? Just read an article describing it as the leading treatment for a list of cancers including thyroid, & I've never heard of anyone taking it. From what I can google I'm guessing it my be a treatment for recurrence & if that's it then here's hoping we never do.


----------



## luvmarypoppins

I think one of the breast cancer girls did that chemo.

Is that chemo for anaplastic or medullary or for late stage pap or follicular? Just curious as to what the article said.

One of my surgeons told me that if mine was not responsive to the rai then they might try external beam on me. The rad. onc. never mentioned even that to me.


----------



## luvmarypoppins

Jenn - and if you are reading along, can you please comment on what the tear duct plug procedure entails.?  

I know my eye surgeon didnt mention it, but due to all my personal family problems now, I dont know if I can go through all of that surgery right now, so I am thinking I might ask her about this option. I am suppose to call soon for an appt. as I think her maternity leave is over soon.

Specifically I am interested in the procedure, pain or more needles in the eyes? Do you notice them etc. etc. 

Thanks so much.


----------



## karajeboo

Thyroidectomy went great on Wednesday, already off the pain meds and I feel great!  Went back yesterday for dr to remove the drain, and it's already healing.

I have my followup on Wednesday and I get the biopsy results then.  Also, I'm guessing they will test my hormone levels that day for the first time since removing part of my thyroid?  Dr is hoping I won't need meds, that the remaining thyroid will pick up the slack?

Of course, I have not seen an endocrinologist, this has all been handled so far by my ENT......


----------



## kimmie

karajeboo - Glad it went well!


----------



## luvmarypoppins

karajeboo said:


> Thyroidectomy went great on Wednesday, already off the pain meds and I feel great!  Went back yesterday for dr to remove the drain, and it's already healing.
> 
> I have my followup on Wednesday and I get the biopsy results then.  Also, I'm guessing they will test my hormone levels that day for the first time since removing part of my thyroid?  Dr is hoping I won't need meds, that the remaining thyroid will pick up the slack?
> 
> Of course, I have not seen an endocrinologist, this has all been handled so far by my ENT......




So very happy to hear that everything went well for you. I cant believe the drain came out so easy too. My one in the hospital hurt a little, but the other one I had in for weeks. I had the dr. give me a shot of lidocaine before he took it out. Didnt hurt at all then.

Wishing you all the best with the results on wed. Keep us informed.

Glad you are feeling better, but I would take it easy for a little bit. Heah, let everyone wait on you for a while!


----------



## mrsklamc

karajeboo said:


> Thyroidectomy went great on Wednesday, already off the pain meds and I feel great!  Went back yesterday for dr to remove the drain, and it's already healing.



So happy it went well!


LMP- the article described that drug as "the leading treatment for" and listed several types of cancers, including thyroid.


----------



## luvmarypoppins

Good morning everyone.

I am here today because there is gong to be a virtual... party to celebrate...

my 3 year cancerversary!!!

Praise God that 3 years ago today I had 3 surgeries in 14 hours, 11 hours of surgery and was in the coma for 2 days after nearly dying and I am still here today!!

Thank you all for letting me vent, for Chrstine for your wealth of knowledge and for those who have gone through all of this and will go through this too, thanks for being inspiring and listening and encouraging etc.

You are all a great bunch of dis'ers.

Blessings to you all always

Now you can all have a virtual piece of  to celebrate along with me.


----------



## luvmarypoppins

Well I started the first dose of the 150 synthroid today.

I know its going to take a while for my body to see any kind of adjustment. I am most interested to see if my heart palpatations will get less. I also feel like I am a bunch of nerves lately, but then I think that is directly related to all my familys personal problems right now.


----------



## dischick4778

luvmarypoppins said:


> Jenn - and if you are reading along, can you please comment on what the tear duct plug procedure entails.?
> 
> I know my eye surgeon didnt mention it, but due to all my personal family problems now, I dont know if I can go through all of that surgery right now, so I am thinking I might ask her about this option. I am suppose to call soon for an appt. as I think her maternity leave is over soon.
> 
> Specifically I am interested in the procedure, pain or more needles in the eyes? Do you notice them etc. etc.
> 
> Thanks so much.



So glad you are doing well and here's to many many more years cancer free!

What I have had done so far with the tear ducts was nothing major at all.  In the eye doctor's office without any needles or anything he popped in a small temporary tear duct plug in each eye.  It took seconds and I did not feel a thing.  They are supposed to last 90 days then they dissolve and they can put in new ones.

The bad news is I don't think it's working.  My eyes tear all the time and this cold weather is not helping.  The skin around my eyes is so sore from all the wiping/dabbing I do.  I'm actually thinking of calling eye dr to get his opinion on why it isn't working.


----------



## luvmarypoppins

dischick4778 said:


> So glad you are doing well and here's to many many more years cancer free!
> 
> What I have had done so far with the tear ducts was nothing major at all.  In the eye doctor's office without any needles or anything he popped in a small temporary tear duct plug in each eye.  It took seconds and I did not feel a thing.  They are supposed to last 90 days then they dissolve and they can put in new ones.
> 
> The bad news is I don't think it's working.  My eyes tear all the time and this cold weather is not helping.  The skin around my eyes is so sore from all the wiping/dabbing I do.  I'm actually thinking of calling eye dr to get his opinion on why it isn't working.



Just curious, do you also notice any blurriness at night while driving. I havent even attempted that yet because my eyes are constantly tearing and blurry. I can handle it and driving during the day but not at night. 

Do you experience anything like that?

I hear you on the weather. As soon as I go out and hit the cold, the eye starts tearing and feels really tight with the skin etc. And then if its in a place with bad humidity, it starts up too. 

I really want to do this and get it over with once and for all. I guess I will have to wait and see what other meetings etc. we will have to go to that are mandatory and required. I know my dh could go with our ds but I want to be there too etc.


----------



## dischick4778

luvmarypoppins said:


> Just curious, do you also notice any blurriness at night while driving. I havent even attempted that yet because my eyes are constantly tearing and blurry. I can handle it and driving during the day but not at night.
> 
> Do you experience anything like that?
> 
> I hear you on the weather. As soon as I go out and hit the cold, the eye starts tearing and feels really tight with the skin etc. And then if its in a place with bad humidity, it starts up too.
> 
> I really want to do this and get it over with once and for all. I guess I will have to wait and see what other meetings etc. we will have to go to that are mandatory and required. I know my dh could go with our ds but I want to be there too etc.



I do have blurriness pretty much all the time if I don't carry a tissue.  I am constantly wiping away the tears to see clearly.  It's very annoying and embarrassing in work meetings so I am going to have to call and see if there's anything else the dr can do.  Dr. did say there are permanent tear duct plugs but he said something about not attempting that until menopause but I don't know why.  I have to ask.  Good luck!


----------



## karajeboo

luvmarypoppins said:


> Good morning everyone.
> 
> I am here today because there is gong to be a virtual... party to celebrate...
> 
> my 3 year cancerversary!!!
> 
> Praise God that 3 years ago today I had 3 surgeries in 14 hours, 11 hours of surgery and was in the coma for 2 days after nearly dying and I am still here today!!
> 
> Thank you all for letting me vent, for Chrstine for your wealth of knowledge and for those who have gone through all of this and will go through this too, thanks for being inspiring and listening and encouraging etc.
> 
> You are all a great bunch of dis'ers.
> 
> Blessings to you all always
> 
> Now you can all have a virtual piece of  to celebrate along with me.



Congrats!  Imagine a virtual glass of wine toasting you many more anniversarys to come!

Today I get my stitches out and get the biopsy results.  To say I'm nervous is an understatement......


----------



## luvmarypoppins

karajeboo - wishing you all the best today!

Update us when you can.


----------



## karajeboo

luvmarypoppins said:


> karajeboo - wishing you all the best today!
> 
> Update us when you can.



Thank you ALL for your support and kind words.  Dr walked in with big smile and said, "NO cancer, however...."

It seems that the pathologist tested the thyroid itself, when the nodule came back negative, and found a micro carcinoma (papillary) on there.  It's gone now and Dr feels its best to let it go for now but follow up annually with ultrasounds, just to keep an eye on the left lobe and the cluster of very small nodules there.

He said that they've seen autopsies where people have these micro carcinomas that have probably been there 30-40 years..... so even had it not come out, we wouldn't have known about it and it would probably have been fine.  But since it's out, and there is nothing to test on the other lobe, we are moving on now!

Also, no thyroid hormone?  He told me to wait a couple months and follow up with my family dr for the blood work, and they can then send me to an endocrinologist if needed.  Is this normal?

Remember, I had all this done by my ENT......


----------



## luvmarypoppins

so happy to hear your good news!


----------



## Christine

karajeboo said:


> Thank you ALL for your support and kind words.  Dr walked in with big smile and said, "NO cancer, however...."
> 
> It seems that the pathologist tested the thyroid itself, when the nodule came back negative, and found a micro carcinoma (papillary) on there.  It's gone now and Dr feels its best to let it go for now but follow up annually with ultrasounds, just to keep an eye on the left lobe and the cluster of very small nodules there.
> 
> He said that they've seen autopsies where people have these micro carcinomas that have probably been there 30-40 years..... so even had it not come out, we wouldn't have known about it and it would probably have been fine.  But since it's out, and there is nothing to test on the other lobe, we are moving on now!
> 
> Also, no thyroid hormone?  He told me to wait a couple months and follow up with my family dr for the blood work, and they can then send me to an endocrinologist if needed.  Is this normal?
> 
> Remember, I had all this done by my ENT......



Congratulations!!  Yes, it is normal.  Your remaining thyroid gland will put out enough thyroid hormone that you will be fine.


----------



## luvmarypoppins

I am having some "issues" with this new medication dose.

Anyone else have this?   Mostly my biggest complaint would be that I am feeling constantly cold. Like before I had my thyroid out cold. Also I am feeling more sleepy and have taken a few small naps during the day.

I know my body is always sensitive to medications etc. the endo knows this well for sure.

Sp did anyone else notice a change from 175 to 150 like this?

The endo did say not to throw the 175 away, since she might have me take that dose maybe 2 days a week. she will decide after the 6 week blood test.

I dont know if I should call her and tell her my symptoms etc.


----------



## Christine

luvmarypoppins said:


> I am having some "issues" with this new medication dose.
> 
> Anyone else have this?   Mostly my biggest complaint would be that I am feeling constantly cold. Like before I had my thyroid out cold. Also I am feeling more sleepy and have taken a few small naps during the day.
> 
> I know my body is always sensitive to medications etc. the endo knows this well for sure.
> 
> Sp did anyone else notice a change from 175 to 150 like this?
> 
> The endo did say not to throw the 175 away, since she might have me take that dose maybe 2 days a week. she will decide after the 6 week blood test.
> 
> I dont know if I should call her and tell her my symptoms etc.




Sorry for such a delay in posting.  I tried two times this weekend and just got "hung up."  In disgust, I just shut down and logged off.

So, based on when you started the new dose and you posted the above, it was only about 5 days.  While I do think changes occur in that amount of time, you absolutely could not be hypothyroid to cause those symptoms.

More than likely, on the 175 dose, you are running "high" and you've gotten used to that version of normal--which is NOT normal.  While I know most parts of the country are having a mild winter, it is February and it is normal to be feeling cold a lot.  I am slight hyper and am not feeling cold much at all yet all the normal people around me seem to be cold.  My carpool mate is constantly flipping my heated seats and I'm sweating.   

I have upped my dose by only 1/2 tab a week.  I was okay for about 4 weeks but the last 4 have been rough.  I get warm really fast, I barely ever get cold and when I get warm, the palms of my hands are getting beet red.  Not fun, but I am getting used to it.

My rambling point in all this is that I think you should tough it and try to get used to what your new normal might be.  It's normal to feel kinda chilly and it *can* be normal to feel sleepy especially when you've taken yourself down a notch.  I would tough it out and give it some time.


----------



## luvmarypoppins

Thanks for your insight Christine.

I am toughing it out but guess what..

I fell asleep during the superbowl yesterday watching the Giants!! and while I was sitting there with a blanket on me because I was cold etc.

Gee, somehow I am not liking this new normal for sure.


----------



## Christine

luvmarypoppins said:


> Thanks for your insight Christine.
> 
> I am toughing it out but guess what..
> 
> I fell asleep during the superbowl yesterday watching the Giants!! and while I was sitting there with a blanket on me because I was cold etc.
> 
> Gee, somehow I am not liking this new normal for sure.




It will probably level out a bit soon.  Have you checked your heart rate lately.  Is it considerably slower than normal?


----------



## 1Grumpy9

I haven't posted much lately because I am kind of in flux right now.  My endo left the office she was in and is going out on her own.  The company she was with is merging with a local hospital and they have a endo that I had gone to before (and hated) and she wasn't going to deal with that again.  I need to go get my labs done for an update on my latest change in meds.  The bad thing is finding a lab to do my lab work.  I also have to schedule an appointment when she has her office up and running.


----------



## luvmarypoppins

1Grumpy9- sorry you have to deal with all of this. I know it can be frustrating dealing with doctors, insurance, tests etc.

Will you be staying with your old endo or do you have to go to the group one?

Will your ins. pay to have you get the blood tests at a local hospital? I know mine really wont unless its something special, like the radiation testing, (pregnancy etc).I am blessed that I just have to go to the next town for my tests.

I hope it will all get straightened out. Try not to stress too much and I hope your new labs come out well for you.


----------



## luvmarypoppins

Yest ds20 and I were watching the show The Revolution. They had a gal on who had a rare and aggressive form of thyroid cancer. Of course right during the segment they interrupt it here to have us watch our Giants team coming home.

I think they are continuing it about her losing weight etc. I am glad thy ca is getting a little publicity.  I also looked at her scar and it looked really good. 

Also I know wdwdancer has been mia around here, but I did see her post on the thyca. boards yest. She had 150 mci of radiation and she said her endo made her stay on the lid for 3 weeks before the rai and then another 2 or 3 weeks after, Wowsa!! I cant remember, but it was a really long time for sure.

I am so glad my rad. onc. says 2 weeks before, really 15 days (I got a free day the one time for testing). And then just a day or 2 post rai.


----------



## lovemygoofy

Hi everyone! Sorry I haven't posted an update since I asked my questions last month. My life is nothing but choas right now.

Anyways I did see my doctor and got some bloodwork. Today she went over the results. I guess we are supposed to "brainstorm" in another appointment. Six months ago my thyroid was 9.xx and these results have it at 1.02 which to me seems like a big drop in a small amount of time.

I flat out told her I was not mean to be a chiuaha or jack rabbit. That I am simply unhappy. However I have to have surgery next week AND I'm moving in less than a month. No stress in my house, none at all.

I told the doctor I would see her for last follow up and get my paperwork for the move.

I'm not sure how or what I should drop my synthroid. I guess gradually go backwards or just stay at this dose until I get to my next post.

Thanks for listening and all your tips. I always appreciate them.


----------



## Christine

lovemygoofy said:


> Hi everyone! Sorry I haven't posted an update since I asked my questions last month. My life is nothing but choas right now.
> 
> Anyways I did see my doctor and got some bloodwork. Today she went over the results. I guess we are supposed to "brainstorm" in another appointment. Six months ago my thyroid was 9.xx and these results have it at 1.02 which to me seems like a big drop in a small amount of time.
> 
> I flat out told her I was not mean to be a chiuaha or jack rabbit. That I am simply unhappy. However I have to have surgery next week AND I'm moving in less than a month. No stress in my house, none at all.
> 
> I told the doctor I would see her for last follow up and get my paperwork for the move.
> 
> I'm not sure how or what I should drop my synthroid. I guess gradually go backwards or just stay at this dose until I get to my next post.
> 
> Thanks for listening and all your tips. I always appreciate them.



How long were you on the dosage that got you from 9.xx to 1.02?  When I was first muddling through all this, I was taking a dosage of .125 and I felt pretty good.  However, I had my TSH tested and I was at 8.xx.  I felt darn good but, obviously, my doctor was unhappy.  I did ONE dosage adjustment up to .137 and within 8 weeks I was hyperthyroid and I had to tweak the .137 so I could get in the correct range.

So if it's only been 6-8 weeks since your last check, the TSH plummet isn't really too fast.

A TSH of 1.02, provided all the other numbers in the thyroid panel are within range, is a very good TSH to have.  I used to hear that 2.0 was considered desirable for conception.  That was before they lowered the normal range of thyroid levels so I'm not sure what is "optimal" now.

What I will say is that ANYTIME I've gone through an adjustment in meds, whether it be upping my dose to take more, or backing off, it is pretty rough, emotionally.  Luvmarypoppins has just posted about her drop in dosage and, within 5 days, she wasn't feeling right at all.

Remember that thyroid hormones are VERY powerful and tweaking them affects every organ in your body.  One of my doctors told me a long time ago that, even though my TSH may be "right" at some point, it often takes the organs in the body 6 months to "catch up" to that.  Of course, I was fairly hypothyroid and damage is done (temporary) to the body when you are hyper or hypo.  It takes the body awhile to repair.  When he told me that, it didn't make a lot of sense at the time, but after going through the ups and downs for so many years, I get what he means now.  

The rapid changes in your TSH probably account for much of your personality/mood changes.  Give it some time to stabilize.  Remember for many years you have probably been technically hypothyroid and that feeling became what seems normal to you.  You will feel normal on your new dose (as long as it's in the normal range) one day.  Couple all that with regular stress and it can be a rollercoaster ride.  I upped my thyroid dose in December and about mid-January, I started feeling it.  Pretty badly.  I finally had to get into my endo this past Friday to get the blood work done.  My face is turning red easily, my palms are beet red when I get warm.  Then to top it off, after feeling high strung all week, my daughter's apartment at college was broken into and they all had their laptops stolen.  I spent most of last weekend gathering the police data, dealing with insurance, trying to purchase her a laptop from 4 hours away.  I sure didn't need that but it all feels worse when the thyroid is being messed with.


----------



## lovemygoofy

Christine said:


> How long were you on the dosage that got you from 9.xx to 1.02?  When I was first muddling through all this, I was taking a dosage of .125 and I felt pretty good.  However, I had my TSH tested and I was at 8.xx.  I felt darn good but, obviously, my doctor was unhappy.  I did ONE dosage adjustment up to .137 and within 8 weeks I was hyperthyroid and I had to tweak the .137 so I could get in the correct range.
> 
> So if it's only been 6-8 weeks since your last check, the TSH plummet isn't really too fast.
> 
> A TSH of 1.02, provided all the other numbers in the thyroid panel are within range, is a very good TSH to have.  I used to hear that 2.0 was considered desirable for conception.  That was before they lowered the normal range of thyroid levels so I'm not sure what is "optimal" now.
> 
> What I will say is that ANYTIME I've gone through an adjustment in meds, whether it be upping my dose to take more, or backing off, it is pretty rough, emotionally.  Luvmarypoppins has just posted about her drop in dosage and, within 5 days, she wasn't feeling right at all.
> 
> Remember that thyroid hormones are VERY powerful and tweaking them affects every organ in your body.  One of my doctors told me a long time ago that, even though my TSH may be "right" at some point, it often takes the organs in the body 6 months to "catch up" to that.  Of course, I was fairly hypothyroid and damage is done (temporary) to the body when you are hyper or hypo.  It takes the body awhile to repair.  When he told me that, it didn't make a lot of sense at the time, but after going through the ups and downs for so many years, I get what he means now.
> 
> The rapid changes in your TSH probably account for much of your personality/mood changes.  Give it some time to stabilize.  Remember for many years you have probably been technically hypothyroid and that feeling became what seems normal to you.  You will feel normal on your new dose (as long as it's in the normal range) one day.  Couple all that with regular stress and it can be a rollercoaster ride.  I upped my thyroid dose in December and about mid-January, I started feeling it.  Pretty badly.  I finally had to get into my endo this past Friday to get the blood work done.  My face is turning red easily, my palms are beet red when I get warm.  Then to top it off, after feeling high strung all week, my daughter's apartment at college was broken into and they all had their laptops stolen.  I spent most of last weekend gathering the police data, dealing with insurance, trying to purchase her a laptop from 4 hours away.  I sure didn't need that but it all feels worse when the thyroid is being messed with.



Christine,

I am so sorry to hear about your daughter's apartment and your stress dealing with everything. I hope you are getting everything straightened out without too much headache.

As for me and the meds, I haven't been tested since early October. Then the TSH was 3.60 which the doctor said was okay for me. I've been taking 50mcg of synthroid since September and haven't been tweaked.

I guess it was starting in early November that I started to feel bad again and then by December I was really not feeling well. 

This is a little TMI by I normally have the same "flow" every month for 5 days and this past month I barely was at 2 days. For someone that wants to be pregnant, I thought I was successful but now I'm thinking it's because my thyroid numbers are messed up again. 

I don't know that I'm going to change the meds right now with all I have going on. I will only see this primary care doctor one more time before the move and right now I'm focused on the other surgery and don't want to risk more changes and will just wait until I get to TX and processed to the new clinic.

Thank you so much for the insight. I know that I have to wait for meds to adjust and you are right my old normal is not my new normal but I do think that there is a happy medium that isn't necessarily the perfect number especially if my thyroid functions some and then it doesn't.


----------



## Christine

lovemygoofy said:


> Christine,
> 
> I am so sorry to hear about your daughter's apartment and your stress dealing with everything. I hope you are getting everything straightened out without too much headache.
> 
> As for me and the meds, I haven't been tested since early October. Then the TSH was 3.60 which the doctor said was okay for me. I've been taking 50mcg of synthroid since September and haven't been tweaked.
> 
> I guess it was starting in early November that I started to feel bad again and then by December I was really not feeling well.
> 
> This is a little TMI by I normally have the same "flow" every month for 5 days and this past month I barely was at 2 days. For someone that wants to be pregnant, I thought I was successful but now I'm thinking it's because my thyroid numbers are messed up again.
> 
> I don't know that I'm going to change the meds right now with all I have going on. I will only see this primary care doctor one more time before the move and right now I'm focused on the other surgery and don't want to risk more changes and will just wait until I get to TX and processed to the new clinic.
> 
> Thank you so much for the insight. I know that I have to wait for meds to adjust and you are right my old normal is not my new normal but I do think that there is a happy medium that isn't necessarily the perfect number especially if my thyroid functions some and then it doesn't.



Yes, I always forget how hard it must be to manage thyroid levels when you've still got your own gland in there doing it's job occasionally.  A light menstrual flow is definitely a sign of hyperthyroidism.  You definitely want to work on those levels since you are TTC.  What I've also found is that the TSH and other numbers take awhile to catch up to what's going on in the body.

About three years ago, I started having a run a pretty significant heart palpitations.  After I had them for about 2 weeks, the first thing we checked was my TSH.  It was 0.50 which is pretty much where it has always been.  So, we decided it wasn't my thyroid levels.  I then spent the next two months visiting a cardiologist who could find nothing wrong with me except, yes, my heart was having benign palps all day long.  I went back to my endo, who ran another thyroid panel.  At that point, my TSH had dropped to 0.03, fairly close to zero, the lowest I've ever been.  He then pulled me off my thyroid medication for 4 days straight and then had me start up again on a lesser dose.  I felt better within days and have never had it happen again.  So, it really was my thyroid yet the numbers were behind.

You could actually have a much lower TSH at this point, given your menstrual symptoms.  

It's just so frustrating, isn't it?  I hope you are able to find someone better to work with you in your new location.

I'm sorry that you spent all this time here and I didn't even get to meet you?  Are you happy to be leaving?  And how do you like this weather?  When you first got here, it was Snowmageddon.  This year, it's like living in South Carolina.  Weird weather!


----------



## luvmarypoppins

Tina - so sorry you are going through all of this. I am sure its frustrating. I hope your surgery goes well and that your move to Texas goes well too. Are you going to Fort Hood?  We lived in the Dallas area for 4 years. I really loved Texas. 
I did not enjoy the fire ants, ice storms or tornadoes. The people there are so nice. I hope you get adjusted to your new home. I honestly wish I lived there again. I have a few friends from our old church there. One I e mail alot. Check out San Antonio when you can and Dallas too.

Christine - sorry you had to deal with all that stress about your dd on top of your not feeling all that well. I know my cousin got the lojack stuff on her kids laptops at college so they could get found if stolen too. I am sure its scary and frustrating for all of you at the same time. Hoping it all works out.

I am stressed beyond stress right now. I really dont handle stress and problems well at all for sure. At least now our big meeting that was suppose to be on Friday is postponed till March 30 so that will help a little I think. Now our brand new washer is broken. That is beyond stressing me out. I am having dh call tomm. I think I would go nuts talking to someone right now.

Hoping everyone else is doing o.k.


----------



## 1Grumpy9

luvmarypoppins said:


> 1Grumpy9- sorry you have to deal with all of this. I know it can be frustrating dealing with doctors, insurance, tests etc.
> 
> Will you be staying with your old endo or do you have to go to the group one?
> 
> Will your ins. pay to have you get the blood tests at a local hospital? I know mine really wont unless its something special, like the radiation testing, (pregnancy etc).I am blessed that I just have to go to the next town for my tests.
> 
> I hope it will all get straightened out. Try not to stress too much and I hope your new labs come out well for you.



I am actually going to stay with her...My family doctor is even going to be sending patients to her even though she is no longer affiliated with the same group.  He really likes her and doesn't like the one that is going to be affiliated with them when the switch is done.

I am not sure about the bloodwork yet, but there is a place near the mall called Quest Labs that apparently does really good work.  I am not a difficult patient when it comes to getting blood taken.  I have a really good vein in the inside of my arm that never "hides" or rolls.

I haven't stressed too much about her moving...I have been more stressed with the pharmacy.  I had a nice go round with them last month when I got my script filled (they didn't fill the entire thing and then said they did and told me that I had to let them know when I picked it up that there might be more than one).  I have since moved my script to another pharmacy because I have had problems with the one pharmacist that is at that is at that pharmacy.  

I should be scheduling an appointment with her here shortly (within the next couple of weeks).  After I get my labs and I see her I will get an update to everyone.


----------



## WDWDancer

Hi Everyone - sorry I have been mia around here...I have been trying to find my way out of hypo-hell!  I had my RAI (5 wks of LID and 5 wks of no meds)...my TSH the week prior to RAI was 188 we thought about going to the ER a couple times.  The muscle pain was so bad, it was killing me to walk from the living room to the bedroom, miserable time I am just thankful I don't have to do it for another 6 months!  

The RAI was anti-climatic - I got my pills and went home to bed   I still am having some "taste" issue's, things I use to love I don't crave, the salivary glands on my right bottom jaw have decided to swell up and annoy me now. I am not sure if it is from the RAI or just still being hypo but I have felt flu'ish for the last couple of weeks....no food sounds/taste good, headaches, swollen/sore throat, and a bunch of lymph nodes are enlarged.

I go see the endo this week (thursday) her office has really angered me...they know how high my TSH was and never once called to check in, give me results, etc.  I have called the office on several occasions because of symptoms I was having but have just been told to take OTC meds, see my family doctor, probably a cold.  This is my 3rd endo and it is so frustrating - I live in Northern VA but actually made an appointment to go to Cleveland Clinic a THYCA doctor from there wrote a book I read while in isolation and I really like his approach to patients....I have been Hypo since October/November and just want to get my TSH back below 10 and I would be happy 

So for my ranting - I hope you are all feeling good - I am off to nap!


----------



## Christine

WDWDancer said:


> Hi Everyone - sorry I have been mia around here...I have been trying to find my way out of hypo-hell!  I had my RAI (5 wks of LID and 5 wks of no meds)...my TSH the week prior to RAI was 188 we thought about going to the ER a couple times.  The muscle pain was so bad, it was killing me to walk from the living room to the bedroom, miserable time I am just thankful I don't have to do it for another 6 months!
> 
> The RAI was anti-climatic - I got my pills and went home to bed   I still am having some "taste" issue's, things I use to love I don't crave, the salivary glands on my right bottom jaw have decided to swell up and annoy me now. I am not sure if it is from the RAI or just still being hypo but I have felt flu'ish for the last couple of weeks....no food sounds/taste good, headaches, swollen/sore throat, and a bunch of lymph nodes are enlarged.
> 
> I go see the endo this week (thursday) her office has really angered me...they know how high my TSH was and never once called to check in, give me results, etc.  I have called the office on several occasions because of symptoms I was having but have just been told to take OTC meds, see my family doctor, probably a cold.  This is my 3rd endo and it is so frustrating - I live in Northern VA but actually made an appointment to go to Cleveland Clinic a THYCA doctor from there wrote a book I read while in isolation and I really like his approach to patients....I have been Hypo since October/November and just want to get my TSH back below 10 and I would be happy
> 
> So for my ranting - I hope you are all feeling good - I am off to nap!



WOW, 188.  The highest mine got was 148.  The flu-like feeling is from the RAI.  I remember that distinctly.  Yes, the hypo is bad enough but that just pushed it over the age.  The taste issues, salivary glands and flu-like stuff is from that.  

I am also living in NoVA.  I have a good endo (but never went through the hypo with him--my old endo retired).  I really like him and his staff so if you need a recommendation, let me know.  

Who is the Cleveland Clinic doctor?


----------



## Christine

After months of what I call "doctoring", it is finally over.

Starting in November, I had to go to the gastroenterologist, then the endo, then the resulting DEXA scan and neck ultrasound, then it was the GYN, which resulted in a mammogram.  Then there was my GP because my hands were turning blue.....

Anyway, I finally got the last of my results today.

Last night, I got my mammogram results by letter (NORMAL--WHEW) and today my endo called me back to discuss the very small increase in thyroid meds.

At my last check, my TSH was at 0.5.  My doctor wanted it lower so I increased my dosage by 1/2 tablet of .137 a week.  About 4 weeks later, I started having minor heart palps and I got warm very easily.  My hands were turning bright red whenever I got hot.  Then the day before my blood draw, I went for a walk and as I was going up the hill, I got the strongest heart palps ever.  I felt fine but it actually made the top of my chest feel like a weight was on it.  Not fun.  

So I had my re-test and just 1/2 tab extra per week drove my TSH down to 0.07.  Based on my symptoms, my endo is moving me back to my usual dose and we will just be happy with a TSH of 0.5.

For the next few months I have NO appointments!!!


----------



## luvmarypoppins

wdwdancer - good to see you posting. Sorry you are having all those post rai issues. If your salivary glands are swollen, you could try a warm compress. I hope your check up goes well tomm. and that you find an endo that you like and can work with. I know Micayla had alot of the taste bud issues, so she might be able to chime in about that. I just felt generally crappy post rai but no specific issues. My salivary glands are permanently damaged from the rai. I just deal with it. Mostly lack of saliva issues.

Christine - I am glad you have no more appts. I hear you loud and clear. I am sure you are so happy. A good reason to celebrate. I always breathe a sigh of relief with my mammo too. I already had one non cancerous tumor out so they always see lots of scar tissue with me. Hope things have settled down with your dd too and things can get back to normal. 

I have a month till the blood tests. I noticed I am still so tired. Fell asleep last night in the chair. So cold all the time and out of breath alot and can feel the heart palp when I was walking to a meeting yest. We shall see


----------



## WDWDancer

Christine - That is so exciting that you are "doctor free" for the next few months!!

I am going to see Dr. Mario Skugor April 2nd for another opinion and hopefully if all goes well I will just go there for my follow up work.  

I had my appointment yesterday with the endo - I wouldn't call it a productive appointment  - I went for more bloodwork today so now just waiting for those results.  You will all love these gems that I got...since I have not gained weight I must not be truly hypo....."real" doctors do not give T3 (which is why I did not receive it to prepare for RAI and why I WILL not be getting it now)....and my favorite was that since I have been back on my medication for almost 5 wks these labs should reflect a suppressed TSH and if not its because I am sabatoging myself with my diet!  Oh, she will not increase my dose from 112 because I do not weigh enough.....I love my husband his advice was we need to stop this "clean" eating and hit up McDonalds and Dairy Queen 

I have 3 lymph nodes on the right side of my neck which are enlarged and several under the jawline on the right side which are also enlarged.  Not sure what the plan is when I asked she said we need to wait on the lab results?

So I guess I am in wait and see mode - luvmarrypoppins I am with you in the "we shall see" 

Hope you all are feeling better


----------



## Christine

WDWDancer said:


> Christine - That is so exciting that you are "doctor free" for the next few months!!
> 
> I am going to see Dr. Mario Skugor April 2nd for another opinion and hopefully if all goes well I will just go there for my follow up work.
> 
> I had my appointment yesterday with the endo - I wouldn't call it a productive appointment  - I went for more bloodwork today so now just waiting for those results.  You will all love these gems that I got...since I have not gained weight I must not be truly hypo....."real" doctors do not give T3 (which is why I did not receive it to prepare for RAI and why I WILL not be getting it now)....and my favorite was that since I have been back on my medication for almost 5 wks these labs should reflect a suppressed TSH and if not its because I am sabatoging myself with my diet!  Oh, she will not increase my dose from 112 because I do not weigh enough.....I love my husband his advice was we need to stop this "clean" eating and hit up McDonalds and Dairy Queen
> 
> I have 3 lymph nodes on the right side of my neck which are enlarged and several under the jawline on the right side which are also enlarged.  Not sure what the plan is when I asked she said we need to wait on the lab results?
> 
> So I guess I am in wait and see mode - luvmarrypoppins I am with you in the "we shall see"
> 
> Hope you all are feeling better



Oh good Lord, you've GOT to tell me who you are seeing.  My last two endos have both used T3.  Neither one of them are fans of using it while on T4 *if* the T3 levels are normal, but would use it if a patient was found to be a non-converter.  But they definitely give it to you if you are prepping for a scan.

Are the lymph nodes recently enlarged?  This could definitely be due to the RAI.

This doctor sounds like a nightmare.


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## mrsklamc

Christine- I'm glad you got good results. 

Lovemygoofy and WDW dancer...I'm sorry you're joining this roller coaster with us...but you couldn't have better folks to walk you through...Don't know what I would have done w/o this board.


----------



## luvmarypoppins

O.K. I officiallly get the stupid thyroid award of the day, or something like that.

Yesterday I was doing my pills for the week. I keep all the bottles in one big baggie and then put the weeks supply into the individual days in the pill holder that ds20 game me.

Well this morning when I got up to take the synthroid, I thought to myself, gee, this pill looks so purple to me, yes a bright purple.

So I wake up and really looks at it without my glasses and with my tearing eye and head cold etc. I see, why yes, its none ofter than the 175 dose, which I am not suppose to take. I got it mixed up with the new 150 dose which is a dull purple.

Well then I went back and looked at the 175 bottle. I honestly dont know how many I had left, but it looks like most of those are there, I think it was a little less than half a bottle left.

So now I am wondering if that mistake if I even made one in the other week etc. might mess up the blood test in a couple weeks. I sure hope not. 

I dont know if I should even tell the endo this unless the blood test is bad. Not to say I dont want to tell her, I just think I might have not actualy taken any more of the 175 etc.

Oh well, another woncderful day of my thyroid cancer world.


----------



## luvmarypoppins

Anyone see the thyca home page with the little blurb about the ladies running at the WDW Marathon for thyca research.

I thought that was really neat.

hmm, if they are disers then they need to find this thread and join us!


----------



## luvmarypoppins

Hope everyone is doing well.

I am still tired and cold. I was so cold yest. I had some soup for lunch.

Next week is the blood test. Great. I will also tell the endo my symptoms when she calls with the results.

Also I read one poster on the thyca website say that the eye surgery I am suppose to have didnt work for her. I really dont want to go through all that for nothing etc. And then she commented that there is a little tube sticking out of your eye area? Hmm, the surgeon never discussed this with me. I definetly lurk alot over there.

Well due to my family problems and my dh always traveling I havent called the eye surgeon for a follow up yet. The surgery is suppose to be in april with a 6 week recovery time and 3 days minimum on pain killers etc. 

I am so on the fence about this right now.


----------



## WDWDancer

Hi everyone seems like it has been quiet here for awhile - hopefully that means everybody is feeling well 

Luvmarypoppins - I did see that on the ThyCa home page regarding the run at WDW..it was pretty awesome!  I tend to lurk over there a lot too to read all the different experiences.  So sorry to hear about the eye surgery - I definitly would call and question the surgeon when you feel up to it.  

My TSH is still crazy high...64 when I had my labs done 2 weeks ago.  My T3 is low and T4 is on the borderline of normal/low.  The endo did up my Synthroid to 137 mcg.  I tend to have a couple good days followed by really bad days.  It is so frustrating and has been making work almost impossible.

My biggest complaint is the muscle cramps and muscle fatigue - it feels like it takes all my energy some days just to move....I assume that it is normal when hypo.  I saw my family doctor about a week ago (check up) and he mentioned to me that I have been hypo so long (since September of last year) that my body is hitting the wall.


----------



## Christine

Hey, does anyone here watch New Girl?  It's my secret guilty pleasure!!!

Anyway, on this past Tuesday's show, Nick gets a football injury and ends up at the GYN for an exam (don't ask).  The doctor feels a lump on his neck and immediately suspects a thyroid tumor (even thought where she felt was NOT the thyroid).  The rest of the show is about him and his friends thinking he's got cancer and is going to die and they are googling thyroid tumors.  It was kind of funny.  Not overly accurate but definitely a thyroid cancer awareness raiser!

WDWDancer--You poor thing, that is a high TSH to be having for so long.  I hope this new dose works quickly.  I bet you might need to go to .150 eventually.


----------



## Southernmiss

WDWDancer said:


> Hi everyone seems like it has been quiet here for awhile - hopefully that means everybody is feeling well
> 
> Luvmarypoppins - I did see that on the ThyCa home page regarding the run at WDW..it was pretty awesome!  I tend to lurk over there a lot too to read all the different experiences.  So sorry to hear about the eye surgery - I definitly would call and question the surgeon when you feel up to it.
> 
> My TSH is still crazy high...64 when I had my labs done 2 weeks ago.  My T3 is low and T4 is on the borderline of normal/low.  The endo did up my Synthroid to 137 mcg.  I tend to have a couple good days followed by really bad days.  It is so frustrating and has been making work almost impossible.
> 
> *My biggest complaint is the muscle cramps and muscle fatigue - it feels like it takes all my energy some days just to move.*...I assume that it is normal when hypo.  I saw my family doctor about a week ago (check up) and he mentioned to me that I have been hypo so long (since September of last year) that my body is hitting the wall.




I just migrated here from the Community/Budget boards.  And couldn't help reading your post and wanted to let you know that I have been hypo since the age of 10.  That's over 30 years ago.  

For the most part, I trucked right along with my dose of Synthroid until after one of my pregnancies 13 years ago.  Something went crazy with my dormant thyroid and my GP couldn't figure it out so he referred me to an endocrinologist.  It is sooo good to talk to a dr. who actually gets the thyroid.
She got me back on track and I have just needed an annual checkup since then.

I was at my endo checkup last year and complained of the bolded.  My #s were in range with Synthroid but I just couldn't shake the body aches.  She lowered my Synthroid dose and added some Cytomel daily for the t4. 

It has been a Godsend!  No body aches, lost a few pounds and much more endurance for daily activities plus a few extra activities.   

Maybe you should ask about it?


----------



## luvmarypoppins

Southernmiss - welcome to the board

Christine - sorry you are not feeling well, saw your other thread on the cb

Well guess who called me twice already, none other than the eye surgeons staff. I havent called back yet. Dh and I talked and with all going on, we are thinking maybe August. In May is our Disney trip, in June I am prepping to teaching in July for VBS at my church and then there is august. I dont want to ruin my whole summer either. 

Made the blood test appt. for saturday. 

Even my ds commented to me that I am not looking or sounding good, gheesh. I told him yes I am out of breathe alot and my bones ache and I am tired etc. 

I am sure the endo is gonna love hearing all of this for sure.

Hope everyone is doing well


----------



## mrsklamc

Had my TSH tested last week, it's at 0.03, I think she wanted it around 1 so I wonder if she's going to lower the dose. I see her Tuesday so I'll let you know. At least we are having gorgeous weather here and extended family is looking at Disney for next year so I have something to plan.


----------



## luvmarypoppins

Micayla - hope your endo visit went well today. Glad to hear your are planning a disney trip.

Well there was a message on my answering machine that the endos office said "my numbers are good" and the endo wants you to stay on the same dose med. Hmm, usually the endo calls me herself. I dont like that and I wanted to know the actual numbers. So I guess I will have to call back as they cancelled my July appt. Love how they always do that and then I also want to describe my other symptoms to her and see what she thinks etc. I am praising God for the good report though.

Finished making the rest of our adrs for the May trip. Now just praying the family situation will be manageable by then etc.

Hope everyone is well.


----------



## Christine

luvmarypoppins said:


> Micayla - hope your endo visit went well today. Glad to hear your are planning a disney trip.
> 
> Well there was a message on my answering machine that the endos office said "my numbers are good" and the endo wants you to stay on the same dose med. Hmm, usually the endo calls me herself. I dont like that and I wanted to know the actual numbers. So I guess I will have to call back as they cancelled my July appt. Love how they always do that and then I also want to describe my other symptoms to her and see what she thinks etc. I am praising God for the good report though.
> 
> Finished making the rest of our adrs for the May trip. Now just praying the family situation will be manageable by then etc.
> 
> Hope everyone is well.



I hate when they don't tell you the numbers.  I'd be interested in hearing what they are considering you have been feeling so poorly.

I'm finally coming out of my 4 week "cold".  It started as some cold but I think turned into sinusitis for the last two weeks.  I knew it wasn't an infection and I am totally against antibiotics for that type of thing so I just toughed it out.  It finally "lifted" on Monday.  I think me pushing the Sudafed helped although that stuff does a real number on me.  It's nice to feel sort of normal for a change.


----------



## mrsklamc

Glad to hear things are going well for you, Christine and LMP. Visit was uneventful, she doesn't feel anything in my neck and I'm not shaking, said my dose was right where she wants it, she wants another TSH and an unstimulated Tg test in 6 weeks.


----------



## luvmarypoppins

Micayla, glad to hear your visit went well. Just curious as to why you have to have another test in 6 weeks?


----------



## mrsklamc

luvmarypoppins said:


> Micayla, glad to hear your visit went well. Just curious as to why you have to have another test in 6 weeks?



She's just monitoring it closely b/c of TTC.


----------



## 1Grumpy9

I got my bloodwork done a week ago and my endo called me with the results.  My TSH levels are a little high, but she didn't want to change my meds thinking that if she lowers it any more, it will throw it back to low.  My calcium is still low, but I am getting a little more continuous number at 6.9.  She just tells me that if I feel bad to push some more Tums or my calcium carbonate when I feel crappy from low blood calcium (which is the tingling face).

I go to her new office on May 16th for my next appointment.  As you all know it is very hard for those of us with Hypo to lose weight.  Well, since I have finally got my meds straightened out, I am down 15lbs!!!  That is a big accomplishment for me!!!


----------



## kimmie

1Grumpy9 So glad to hear things are getting under control!  I am jealous of your weight loss! lol  I am losing my extra weight very slowly. I have to watch everything I eat.  My endo is keeping my levels a bit above normal (go figure).  I am tired sometimes, but I keep going!
I am starting to feel like my old self again.  I do not like waking up early to take my meds, but I need coffee when I get out of bed.  Am I right in thinking I have to take meds 1 hour before eating or drinking?  Does it really have an effect on things?  Does anyone take it at night?


----------



## Christine

kimmie said:


> Am I right in thinking I have to take meds 1 hour before eating or drinking?  Does it really have an effect on things?  Does anyone take it at night?



I take mine right when I get out of the shower (about 4:30 a.m.).  I don't have my tea/coffee until I get to work at 6:00 a.m. so it's never an issue for me.

On the weekends, I take it right when I get up but I have my tea within about 15 minutes.  

I think as long as your not using loads of creamer or milk, it's probably fine to take it close enough to your coffee.  

I don't know about you but I take Levoxyl and that stuff starts disintegrating right on my tongue.  I seriously doubt that it lays around in my stomach for more than another 10 minutes.  Once it's absorbed through into bloodstream, I would think coffee would be fine.  Coffee does not bind to T4 (however, calcium does).  So, stay away from the dairy products for a bit.


----------



## kimmie

Thanks Christine.  I am taking Synthroid.  I figured that even 30 minutes would be fine.  I do take non dairy creamer but it has soy in it.  That's not good either, right?

I think the pill gets stuck on the way down!  I hate drinking water when I am not even awake! lol


----------



## Christine

kimmie said:


> Thanks Christine.  I am taking Synthroid.  I figured that even 30 minutes would be fine.  I do take non dairy creamer but it has soy in it.  That's not good either, right?
> 
> I think the pill gets stuck on the way down!  I hate drinking water when I am not even awake! lol



Correct--soy also interferes with T4 absorption into the bloodstream but it is not really at the "stomach" level but more in the "bloodstream" level.  It binds to the T4 in your bloodstream so you would definitely want to space out the soy creamer from your T4 ingestion.

HOWEVER, having said that, if you know you are going to have soy/calcium/whatever every day and you can't space it 2 hours apart, you can just do what you do but realize that you will probably need to take a higher dose of T4 to compensate for that.  Many people just do that.


----------



## 1Grumpy9

I am one that once I get out of the shower in the morning I take my meds (around 5:45am) and then don't eat anything until 7am.  Of course this is during the work week and on the weekends, usually I take it when I get up to go to the bathroom and then back to sleep I go...LOL!!!  I like to sleep in on the weekends a little bit more than during the week.

I have been still dealing with not going to sleep at a reasonable time during the week.  It is usually around 11:30 or midnight until I finally fall asleep.  It sucks during the work week because I have to get up at 5:15 for work.


----------



## kimmie

I have been still dealing with not going to sleep at a reasonable time during the week.  It is usually around 11:30 or midnight until I finally fall asleep.  It sucks during the work week because I have to get up at 5:15 for work.[/QUOTE]

I know what you mean.  I take some melatonin at night.  It does help me settle in and fall asleep.


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## mrsklamc

Stupid thyroid cancer.

I've practiced good oral care over the past year but my teeth have still really gone downhill. Dentist says my saliva 'is not working at all.'


----------



## luvmarypoppins

1 Grumpy9 - Congrats on the weight loss

Micayla - my dentist said to rinse with Act. I know some people use Biotene too. I make sure I floss alot. My salivary glands are fried too. 

kimmie - glad you are doing well too.

Christine - I hear you on the college stuff. (Saw  your other posts). We are doing stuff with ds20. He got accepted into 2 nursing schools so far and we are waiting for 2 more. 

Well I took a mini nap at like 5 pm yest. I know this is so not right. I feel tired right now too at like 11 am. I have not called the endo back yet. Just too much going on.

I am so stressed out right now. The meeting which was suppose to be tomm is delayed again. Last night dh hit a deer, there goes our new to us van (it  is a 2009). The one we got in Sept. after the girl on the cell phone totaled our van. I just thank God we were all o.k. I was int he front and ds22 was in the back. It was on the drivers side. I am sure the deer died. It was actually 2 deer. I know it will need some work to get it fixed. And my dh is leaving on another 9 day trip to the west coast next week, wont be here for easter. Ds22 might go with him. 

 Well at least I finished all the adrs for our trip. (Chefs,Tutto,Liberty Tree and Kona) I will really need a a vacation after all of this.


----------



## kimmie

luvmarypoppins


----------



## SingingMom

Just found this thread and it is very interesting to know others are/have gone through similar things.

I started with Graves Disease, put on PTU and had a "2 million in one chance side effect" of hepatitis!!  Took me off of that and had radioactive idodine, which of course, put me hypothyroid.  After a few months of trying to figure out proper synthyroid levels, dr detected a nodule, after fine-needle biopsy, discovered papillary carcinoma of the thyroid. 

Had a total thyroidectomy with 7 out of 10 lymph nodes involved.  That was 20 years ago, and I am doing very well.  So , hang in there, ladies.  
I wish you all good health!


----------



## Christine

SingingMom said:


> Just found this thread and it is very interesting to know others are/have gone through similar things.
> 
> I started with Graves Disease, put on PTU and had a "2 million in one chance side effect" of hepatitis!!  Took me off of that and had radioactive idodine, which of course, put me hypothyroid.  After a few months of trying to figure out proper synthyroid levels, dr detected a nodule, after fine-needle biopsy, discovered papillary carcinoma of the thyroid.
> 
> Had a total thyroidectomy with 7 out of 10 lymph nodes involved.  That was 20 years ago, and I am doing very well.  So , hang in there, ladies.
> I wish you all good health!



YOWZA!!!

You had one heck of a misbehavin' thyroid gland!!


----------



## Christine

LMP--

You are having a rough time of it.  My biggest fear in life is to hit a deer.  My carpool buddy laughs at me all the time about it.  I actually get very anxious when driving during deer season.  Uuuugggh.

I think that's awesome that your son is applying to nursing school.  I have tried to push my son in that direction as I think he has the smarts and empathy to be in the medical field (he has so many issues himself) but he gets all weird when I mention nursing and thinks it's a "girl" thing.  I told him "Think of all the women you'll meet!!"


----------



## Pembo

I was routed to your thread from the CB. Found out today that my 25 yo niece has been dx with thyroid cancer. I don't know much more than that. She sees an oncologist on April 9th. I tried calling her today but haven't heard back.  

I've read a little of the thread and have lots of questions for her.


----------



## luvmarypoppins

Pembo said:


> I was routed to your thread from the CB. Found out today that my 25 yo niece has been dx with thyroid cancer. I don't know much more than that. She sees an oncologist on April 9th. I tried calling her today but haven't heard back.
> 
> I've read a little of the thread and have lots of questions for her.



Just wondering if you have been able to speak to your niece.


----------



## Pembo

Talked to my niece this weekend. She saw a dr on Monday. She is to have a thyroidectomy with some lymph nodes out as well. She is going on a cruise at the end of June so she wants her surgery asap. Right now she is scheduled for April 27. 

I gave her links to this thread as well as to the thyca.org site.

She is worried about the scar and gaining weight after surgery. She gained 15 lbs in 4 months which is the reason she went to the doctor in the first place. 

It's hard to be an aunt to a very independent niece.


----------



## mrsklamc

Things vary, but I was in no shape to cruise 8 weeks out from my surgery.  As for the scar-- for mine they drew blood prior to the surgery, spun out a certain kind of cell, and injected it into the incision. That helped a lot and the scar on the front of my neck is minimal. The side of my neck is a different story but I just wear my hair over it.


----------



## luvmarypoppins

Pembo, I am glad you got to speak to your niece too.

My scar is really not the greatest, but then again my case was not normal. I have the normal scar plus a drain hole scar and then I have a jagged scar on the L side due to all my complications and surgeries.

If her surgeon is very experienced he or she should be able to do a good job.

Also I was in no shape to go any where about 2 months post op. 

I would be thinking she would be starting to get ready for rai if she is having it, thus med withdrawl, or thyrogen shots  and lid diet etc.

Has she told her surgeon of her vacation plans? I think she should and maybe look into postponing the trip etc. Hopefully it will not be a financial hardship to change it or cancel it. 

Wishing your niece all the best.


----------



## KAMLEM

Pembo-

Everyone's case is different so I wouldn't say she should definitely cancel her trip. I have had 2 thyroidectomy's and a radical neck dissection and I would have been fine to go on vacation 3 weeks later each time. As far as the RAI, she may not even be having that so that may not be a factor. If she can wait to see how she feels after her surgery I would definitely suggest that.

I wish her luck!


----------



## luvmarypoppins

I am so miserably sick with a cold,cough and respiratory thing. 

What tricks do you have to make it more comfortable with coughing etc. and having a neck dissection?


----------



## mrsklamc

I hate congestion  ...I don't have any complications from my surgery though when it comes to coughing. Typically I don't notice my incision at all.

I usually take lots of showers, CVS has little vapor tablets I put in there too to help clear out some of the congestion for a little while.


----------



## Christine

Coughing is the worst but, fortunately, doesn't bother my incision area.

Many years ago, I got whooping cough.  That was awful.  I coughed so hard I lost consciousness once and almost blacked out a few other times.  Finally my doctor did give me some Flonase nasal spray because the drainage was affecting the obliterated bronchial area.  That did cut my cough down in half, which was better than nothing.

If you can get the drainage to slow down, the coughing will decrease if it is caused by mucous.  Have you have tried the Neti Pot?  That is great when you have a cold.


----------



## Haimia

Hi, new to this thread and looking for help.  Endo is on vacation and I don't see him until May 8.  I got my ultrasound and bloodwork reports from hospital.  Bloodwork is all normal except for T3 free was 1.88 (normal is 2.2 - 4.0).  So, I am slightly hypo?

Ultrasound showed multi-nodular right lobe, left lobe has nodule 2.5 cm with soft tissue and fluid with internal color flow and isthmus has nodule 1.7 cm with soft tissue and fluid.  Not great from what I have seen on internet but also not definite of anything.  I do not like waiting for another three weeks! 

Endo was slightly hesitant to consider needle biopsy as I am on blood thinners; however, other doctor said they can help with the meds to make biopsy happen.  I have my DD#2 wedding in early June and have a trip to Germany planned in July.  What are my chances!!!  Just looking for some ideas and guidance!


----------



## Christine

You T3 is below normal but, given the entire panel, you aren't necessarily hypothyroid.  An endo needs to interpret the whole thyroid panel.  What did your TSH and T4 levels look like.

Statistically, the odds are in your favor.  Multinodular is a good sign, liquidity is a good sign, and in general, thyroid cancer is rare.  All in your favor.

However, as soon as I say they, there is someone that beats those odds and you're left scratching your head.  At this point, I think it's wise to be evaluated but I don't think you need to worry.  A solitary, hard, non-functioning nodule is the one to worry most about.


----------



## Haimia

T4 was 0.99 (normal 0.89 - 1.76); TSH was 3.151 (normal 0.400 - 4.200); thyroid peroxidase 0.3 (normal 0.0 - 9.0)

As far as the nodules go, the right contained nodules (subcentimeter) and the left contained only one as well as the isthmus contained only one or at least that is what report mentioned.  Perhaps more subcentimeter nodules but not listed.  

I need to stay off the internet search sites!!  Only a little over two weeks to wait.  Guess I need to be more patient!


----------



## KAMLEM

Haimia said:


> T4 was 0.99 (normal 0.89 - 1.76); TSH was 3.151 (normal 0.400 - 4.200); thyroid peroxidase 0.3 (normal 0.0 - 9.0)


My doctor would consider that TSH high, she says that normal is anything between .3 and 3. When mine gets in the range of 3 I really start to drag. She likes to keep me right around .3.


----------



## Christine

Haimia said:


> T4 was 0.99 (normal 0.89 - 1.76); TSH was 3.151 (normal 0.400 - 4.200); thyroid peroxidase 0.3 (normal 0.0 - 9.0)
> 
> As far as the nodules go, the right contained nodules (subcentimeter) and the left contained only one as well as the isthmus contained only one or at least that is what report mentioned.  Perhaps more subcentimeter nodules but not listed.
> 
> I need to stay off the internet search sites!!  Only a little over two weeks to wait.  Guess I need to be more patient!



Yes, these days the lab limit is 3.0.  You are borderline so, while I wouldn't call you hypothyroid, you're certainly not functioning optimally.

My male coworker has a 4.25 TSH and they won't treat him due to the fact that he feels good and is over 60 years old so there are complications there with cardiac issues.  Each case is different.


----------



## Haimia

Okay, this is good to know.  I have the symptoms of hypo - fatique, weight I can't lose, rough/dry skin, irritable - so it would make sense.  I wonder why the hospital has listed that normal is 4.2 or below, when new norm is 3.  It is not a small band-aid station hospital.  

Will have multiple questions in hand when I see the endo in May!


----------



## Christine

Haimia said:


> Okay, this is good to know.  I have the symptoms of hypo - fatique, weight I can't lose, rough/dry skin, irritable - so it would make sense.  I wonder why the hospital has listed that normal is 4.2 or below, when new norm is 3.  It is not a small band-aid station hospital.
> 
> Will have multiple questions in hand when I see the endo in May!



All the labs are still mostly listing the 0.4-4.  It's the American Academy of Clinical Endocrinologist who have changed the "normal" range to 0.3 - 3.0.  And endocrinologist will usually look at your numbers and decide what to do based on what endos think.  They also take into account your whole situation so some may treat and some may not.


----------



## Pembo

My niece is scheduled for her thyroidectomy on Friday. She was told the surgery would last 4 hours, is that normal? We also learned today that she has stage 2, not sure what type. I know she will be having lymph nodes taken out as well. I've read the difference between stages on thyca but what does that mean in real life?

Also, anything you really needed or had that you would suggest to a new surgery patient? I want to give her a bag of things and am looking for suggestions. (ie. after my surgery for a brain tumor, I needed chapstik).


----------



## luvmarypoppins

Pembo - wishing your niece all the best on Friday.

I would say make sure she has button down pjs and shirts on hand. Its not fun trying to "slip" a shirt over your head post op.

If she is going to have a drain, then a shirt or pjs with a front pocket could help.

Maybe a pen and paper to write things down if she is too tired to talk

I liked playing cards with my 3ds when I was feeling better post op. I had to stay in for a week

Maybe some lifesavers or jolly ranchers as I am sure she will be having saliva issues.

If you are under 45 I think you are a 1 or 2 stage.

I was a stage 3B I think, but really the oncologist said I am a stage 4?? I dont want to question her. She said, she doesnt care about stages anyway. 

If she needs to have RAI, then I would definetly have her start seeking out thyrogen etc. There was a lengthy post on how to get it on thyca. I honestly was blessed as my onc. is the 4th largest user in the US she said, so she has a great supply. Some drs. do not use it however. I have never had a problem with it except the nausea.


----------



## Christine

Pembo said:


> My niece is scheduled for her thyroidectomy on Friday. She was told the surgery would last 4 hours, is that normal? We also learned today that she has stage 2, not sure what type. I know she will be having lymph nodes taken out as well. I've read the difference between stages on thyca but what does that mean in real life?
> 
> Also, anything you really needed or had that you would suggest to a new surgery patient? I want to give her a bag of things and am looking for suggestions. (ie. after my surgery for a brain tumor, I needed chapstik).



My first surgery was about an hour (partial) and my second surgery to get the rest along with a lymph node and "clean up" was closer to 2 hours.  Four hours seems a bit long to me; however, maybe he is just giving you worst case scenario.

I was only in the hospital overnight and didn't really feel like I needed much.  I'm a reader so books, magazines would have been good.

There is no difference in prognosis from stage 1 to stage 2.  Stage 2 usually means you have lymph node involvement.  Not sure how the doctor knows this unless they had done some pre-scanning.  Or maybe it is the size of the nodule.  Anyway, same prognosis.  After-surgery treatment with RAI will usually take care of it!


----------



## luvmarypoppins

Pembo - I forgot to add that my surgery was 6 hours originally, just as the surgeon said. 4 hours for the thyroidectomy and 2 hours for the neck dissection and lymph node removal. I think I had almost 50 lymph nodes out. They wanted to take all mine out as the surgeon told my dh the cancer was more extensive than the testing showed and worse when he got in there etc.



Haimia - Just wanted to say Welcome too. I am clueless as far as numbers go and sometimes my endo does not even tell me the numbers. I always ask Christine.


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## mrsklamc

My cancer was in my lymph nodes and it took 5 hours. The surgeon said she dug from my jawbone down to my collarbone trying to get as many out as she could, and I could feel it the day after. They were swollen to the size of quarters when they should have been about the size of peas.

Anyway Pembo, in terms of what she will need; My MIL bought me a nice new pair of sweatpants and a zip up sweatshirt, and that did nicely. Anything would have worked that didn't have to be pulled over my head but it was nice to have something new. 

My surgeon recommended a bottle of vitamin e capsules, break one a couple of times a day and massage the scar once it is healed...I've read that it's the massage that breaks down the tissue and minimizes the scar more than the oil itself.

I didn't really have any trouble eating whatever I wanted, that I remember.

What are her instructions post op? I had to go hypothyroid (no thyrogen for my radioactive idodine treatment) and that was far worse than the surgery - being hypo and the radioactive iodine diet were horrible. Do you know when she is doing all that?

Another thing that really helped post surgery- My MIL is a nurse and the made sure I got up and walked - just the hallway in our house; to get the anesthesia out of my lungs. I came home and slept for a few hours, then she washed my hair. After that she said, "Now you're going to rest for awhile and then your husband's going to give you a bath." And she started weaning me off my pain meds.

Left to our own devices, I had two weeks of pain meds, and my DH would have let me lay on the couch popping pills for two weeks. I really think that made a huge difference in my recovery.


----------



## Haimia

luvmarypoppins said:


> Haimia - Just wanted to say Welcome too. I am clueless as far as numbers go and sometimes my endo does not even tell me the numbers. I always ask Christine.



Thanks for the welcome.  This is all new to me and Christine's notes are great!  My mom had issues and thyroid removed, but I was only 12 and it was not a subject that was discussed.  She lived over 30 more years after surgery.  I think (but don't know for sure) that her thyroid was pre-cancerous.  How I wish, now, that it was discussed!


----------



## luvmarypoppins

Well today I called the emdo to reschedule my visit. It was for the end of July. Got a letter in Feb. that they cancelled it. 

Of course I got an earful about what took me so long to call back. I told them I go through this all the time when they cancel on me (the other time it was like 3 times). I told them the endo said just talk to her and double book me. She says, oh..ok..October. 

I said..no way, I have cancer and I am every 6 months and I am doing sono and blood work too etc. So they said they will call me back. Um, yeah alright.

I was just looking at our hosp. cancer stats. 2010 is the latest I could find. They have 177 new thyroid cancer pts. 43 are male. Does that seem like a little high male wise, just that they were commenting that there could be an increase if there were 911 responders from here etc. (article once in the paper)

I just think that they might have to get another endo to join the practice just to keep up with the patients etc. The last staff they added was my endo and that was like 3 years ago.

And thats my thyroid news for the day.

Oh and I am going to Disney 3 weeks from today. I need a vacation for sure.


----------



## luvmarypoppins

Pembo - have you had any updates on your niece. Hope all went well for her.


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## left210

I am hypothyroid.  I am looking for a new endo as my current dr. only tests tsh and t3/4.  I am currently on Synthroid and still having lots of symptoms.  What tests should I have done and what questions should I ask when looking for a new endo?


----------



## mrsklamc

left210 said:


> I am hypothyroid.  I am looking for a new endo as my current dr. only tests tsh and t3/4.  I am currently on Synthroid and still having lots of symptoms.  What tests should I have done and what questions should I ask when looking for a new endo?



What is it that you are wanting tested? I firmly believe I see the best endo in Indiana and she typically only tests my TSH.


----------



## left210

mrsklamc said:


> What is it that you are wanting tested? I firmly believe I see the best endo in Indiana and she typically only tests my TSH.



I am not sure what I need tested.  I have been reading about TSH not being the only test to go by and that you need Free T3/T4 and other thyroid type measures.  Where are you in Indiana and who is your endo as I am in Southern Indiana.  I am on Synthroid and still have hypo symptoms and am wondering if I need T3 too.


----------



## Pembo

Hi again. My niece had her surgery last Friday. They took the whole thyroid and 40 lymph nodes. She is still in the hospital as she has a chyle leak. Any experience with that here? 

My sister in law said she looks good, is in very little pain and is eating well. The drains are bugging her and she is very impatient with having to stay in the hospital. We are going to visit on Friday. Today the surgeon said she'll probably be in the hospital until the weekend. (that's a week). She was also told she is to be off work for 3 weeks.

Thanks for all the knowledge shared on this thread.


----------



## luvmarypoppins

Pembo - glad your niece made it through the surgery.

Looked that up but I have heard of it. (the leak)

I was in the hosp. too for a week post op. Mine was 3 surgeries and the coma so it took a while to recover for sure.

I had 2 drains too. One they pulled in the hospital with no lidocaine. Ouch and then some!

The other drain I had in for about 3 weeks because the dr. who saved my life had to rip my neck open in a few minutes etc. A real mess. 

My advice: Ask the surgeon to use lidocaine injection before they pull the drain. It really hurts alot less. And I have a big drain scar now on the one that stayed in a long time. Oh well. I am older and I could care less, but its visible for sure. A nice roundish mark.

40 lymph nodes is alot but that is a good quadrant of them. I had around that many too.

I know one guy on thyca boards refers to it as scorch the earth aka get rid of everything that you have to etc. 

Wishing your niece all the best. Keep us updated when you can.


----------



## Haimia

"I got my ultrasound and bloodwork reports from hospital. Bloodwork is all normal except for T3 free was 1.88 (normal is 2.2 - 4.0). So, I am slightly hypo?

Ultrasound showed multi-nodular right lobe, left lobe has nodule 2.5 cm with soft tissue and fluid with internal color flow and isthmus has nodule 1.7 cm with soft tissue and fluid. Not great from what I have seen on internet but also not definite of anything. I do not like waiting for another three weeks!

Endo was slightly hesitant to consider needle biopsy as I am on blood thinners; however, other doctor said they can help with the meds to make biopsy happen. I have my DD#2 wedding in early June and have a trip to Germany planned in July. What are my chances!!! Just looking for some ideas and guidance! 

T4 was 0.99 (normal 0.89 - 1.76); TSH was 3.151 (normal 0.400 - 4.200); thyroid peroxidase 0.3 (normal 0.0 - 9.0)

As far as the nodules go, the right contained nodules (subcentimeter) and the left contained only one as well as the isthmus contained only one or at least that is what report mentioned. Perhaps more subcentimeter nodules but not listed."  from Haimia earlier in this thread!

Okay, so I saw the endo yesterday.  As he is looking at the bloodwork, in particular the FT4, he comments "hmmm, that's interesting"  - SO what the heck does that mean?  He is rerunning TSH and FT4 to double check the results!!

I also have a FNA scheduled for the 10th with endo follow up on the 16th.  He wanted to do follow-up in six weeks, but I said "that long"  then suggested 4 weeks and I said "that long" so we got it at just two weeks.  Won that one!


----------



## mrsklamc

left210 said:


> I am not sure what I need tested.  I have been reading about TSH not being the only test to go by and that you need Free T3/T4 and other thyroid type measures.  Where are you in Indiana and who is your endo as I am in Southern Indiana.  I am on Synthroid and still have hypo symptoms and am wondering if I need T3 too.



I was hoping Christine would weigh in on what 'other thyroid type measures' would be. Keep in mind that because there are SO many things your thyroid does, there are many thyroid symptoms that can be caused by other things as well. But you definitely need a good endo ASAP. I see Dr.Dawn Ayers in Noblesville, but the last I knew she was not accepting new patients.


----------



## Suzanne033

luvmarypoppins said:


> My advice: Ask the surgeon to use lidocaine injection before they pull the drain. It really hurts alot less. And I have a big drain scar now on the one that stayed in a long time. Oh well. I am older and I could care less, but its visible for sure. A nice roundish mark.



I had two drains as well and when they pulled my drains before I was released from the hospital there was no pain at all. It just felt... weird (for lack of a better word). 

I totally agree with your comment about the scars. My drain scars are nearly non-existant now (11 years post-surgery). However, my surgery scar hypertrophied meaning it got thick and raised. It wasn't as bad as some of the pics you see of Keloid scar but bad enough that I was VERY self-concious of it. I tried everything to get it to go away (vitamin ointments, scar patches, even a consult with a plastic surgeon). For many years (probably 5 or more) I only wore shirts that had a very high necklines. Every time I looked in the mirror that was all I saw glaring back at me. I guess over time I just started to forget about it or got used to it or maybe it was that when I did wear a lower neckline no one seemed to notice it. That probably gave me confidence to just let it out more and more.

Now I kind of see it as a badge of honor. It was something I went through and survived. I have a 13yo daughter, who was 1 1/2 at the time, that I get to see blossom into an amazing woman and if all I have to do is deal with a scar and take some medicine everyday than so be it. Bring it on!!!

BTW, all those year I was wearing high collars shirts I was hiding one of my best assets... AMAZING CLEVAGE!!!!


----------



## luvmarypoppins

Suzanne - I  when you said the badge of honor comment. My dh calls it the badge of courage.

My dh just about passed out when they pulled the 2nd drain. He didnt see the first. I dont know why it affected him so much. He he is so used to this stuff He did 300 bandages for my other surgeries, sat and held my hand when I was in the coma for 2 days, watched some dr. oking needles in my eyes last year etc. I guess the drain just creeped him out.

 I am going to the oncologist on Thurs. Going to tell her how tired I feel. I am sure she could care less. She is pretty unemotional and detached from all the patients. I am glad I dont have to see her alot. I am sure she will just say, well tell the endo. And of course I cant even get that office to call me back to reschedule my appt. So I will call them again this week, sigh. 

Oh well I will be in Disney in 11 days I think we have 9 adrs, and we are gonna be spending time at the Flower and Garden show and of course star wars week end and I am definetly going to be spending some serious time in Storm Along Bay at the Beach Club.  I so need a vacation.


----------



## Pembo

luv-Have a great trip.

My niece is still in the hospital, it's been 10 days. There was talk of another surgery to try a chyle leak repair however they decided to wait the weekend and it appears the waiting was a good thing. Her leak has slowed way down and there was talk of her going home on Tuesday. They pulled one drain on Thursday but the other was still running. Her calcium levels are good.

Thank you all for your advice and I wish you best of luck on your journeys.


----------



## hcmommy

So, I went for a follow up ultrasound a few days ago on the nodules and goiter found on my left side last year.

Another one was found on the right 2.3cm subrasternal.  An FNA was done.  My pathology results say thyroid follicular cells; colloid material; low risk for follicular neoplasm.

Seeing my Endo late this afternoon and i am freaked out.

If you had a substernal goiter with follicular cells present would you push for surgery?


----------



## talulabelle

Hello all - I'm new to this thread...I actually was going to the coping board to see if there was a prayer thread that I could ask people to pray for my son who may need knee surgery and this thread was at the top of the board...

I just had an ultrasound done today of my thyroid.  I went to my doctor because I was feeling so bad.  I was sure I was hypothyroid as I had all the symtoms and I have been told in the past that I was boarderline and that my thyroid was slightly enlarged _ I don't know why but my doctor was never concerned enough in the past to send me for more tests.  Well this time, she said my thyroid was very enlarged and sent me for blood work...It came back normal which was surprising to me.  SO then she sent me for an ultrasound which I just had done today.  I am a bit scared...I don't know anything about any of this - but the ultrasound too a long time - and the technician was measuring all of these black spots that I could see on the screen.  There were alot of them.  I didn't know if they are normal parts of the thyroid tha they measure or if it something I should be concerned about .  I am worried about what  I will hear.  However, funny enough - I am so concerned about my son's knee and the possiblility that he may need surgery that I forgot about all of this until I saw this thread...

Can anyone tell me from experience how worried I should be?


----------



## Christine

talulabelle said:


> Hello all - I'm new to this thread...I actually was going to the coping board to see if there was a prayer thread that I could ask people to pray for my son who may need knee surgery and this thread was at the top of the board...
> 
> I just had an ultrasound done today of my thyroid.  I went to my doctor because I was feeling so bad.  I was sure I was hypothyroid as I had all the symtoms and I have been told in the past that I was boarderline and that my thyroid was slightly enlarged _ I don't know why but my doctor was never concerned enough in the past to send me for more tests.  Well this time, she said my thyroid was very enlarged and sent me for blood work...It came back normal which was surprising to me.  SO then she sent me for an ultrasound which I just had done today.  I am a bit scared...I don't know anything about any of this - but the ultrasound too a long time - and the technician was measuring all of these black spots that I could see on the screen.  There were alot of them.  I didn't know if they are normal parts of the thyroid tha they measure or if it something I should be concerned about .  I am worried about what  I will hear.  However, funny enough - I am so concerned about my son's knee and the possiblility that he may need surgery that I forgot about all of this until I saw this thread...
> 
> Can anyone tell me from experience how worried I should be?




You shouldn't be *too* worried.  The black spots are cysts or nodules of some sort.  Multinodular goiter is a common and, statistically, multiple nodules are less likely to be cancerous than just have one solitary lump.  That's not to say that cancer isn't a possibility but it's more likely you have a nodular condition.  

They ultrasound should give a pretty good description of whether the lumps are solid or liquid (or both) and then depending on that, you may get a recommendation to have a fine needle aspiration just to see what they are made of.


----------



## luvmarypoppins

hcmommy - what did your endo say at your visit?

talulabelle - I had 2 solid masses but as Christine said the multi thing is probably better.  What surgery does your ds have to have? My ds had knee surgery. I think they just fixed the acl or something. He did well but has a rare condition that the ortho said he will proably need a knee replacement by the time he is 40. His cartlidge is way too soft and unusual they said. But he wa out with friends the next day and did his pt at his job. He recovered very quickly.

Happy to report that there is endo success!! They called and gave me a visit in mid July. I usually go the end of the month, but I will take it. Only bad thing is the week before that I need to get the sono is the week I am teaching VBS at my church. Afte dealing with 20 3rd graders I will be happy to rest on the table for about 20 min

My ds3 just found out that he was not accepted into his Number 1 choice nursing school. Oh well. He wa accepted into about 4 or 5 others. He has it narrowed down to 2. One an RN and one a BSN. The BSN he needs to board and it will be like 99k. The RN program is cheap and he could transfer to a BSN bridge program at another college. Decisions, decisions. 
So glad I am not on 200 synthroid because if I heard the 99k price with that I would have really freaked.


----------



## Haimia

Haimia said:


> "I got my ultrasound and bloodwork reports from hospital. Bloodwork is all normal except for T3 free was 1.88 (normal is 2.2 - 4.0). So, I am slightly hypo?
> 
> Ultrasound showed multi-nodular right lobe, left lobe has nodule 2.5 cm with soft tissue and fluid with internal color flow and isthmus has nodule 1.7 cm with soft tissue and fluid. Not great from what I have seen on internet but also not definite of anything. I do not like waiting for another three weeks!
> 
> Endo was slightly hesitant to consider needle biopsy as I am on blood thinners; however, other doctor said they can help with the meds to make biopsy happen. I have my DD#2 wedding in early June and have a trip to Germany planned in July. What are my chances!!! Just looking for some ideas and guidance!
> 
> T4 was 0.99 (normal 0.89 - 1.76); TSH was 3.151 (normal 0.400 - 4.200); thyroid peroxidase 0.3 (normal 0.0 - 9.0)
> 
> As far as the nodules go, the right contained nodules (subcentimeter) and the left contained only one as well as the isthmus contained only one or at least that is what report mentioned. Perhaps more subcentimeter nodules but not listed."  from Haimia earlier in this thread!
> 
> Okay, so I saw the endo yesterday.  As he is looking at the bloodwork, in particular the FT4, he comments "hmmm, that's interesting"  - SO what the heck does that mean?  He is rerunning TSH and FT4 to double check the results!!
> 
> I also have a FNA scheduled for the 10th with endo follow up on the 16th.  He wanted to do follow-up in six weeks, but I said "that long"  then suggested 4 weeks and I said "that long" so we got it at just two weeks.  Won that one!



I am reposting this as I got no response.  Any takers?


----------



## angwill

Haimia said:


> "I got my ultrasound and bloodwork reports from hospital. Bloodwork is all normal except for T3 free was 1.88 (normal is 2.2 - 4.0). So, I am slightly hypo?
> 
> Ultrasound showed multi-nodular right lobe, left lobe has nodule 2.5 cm with soft tissue and fluid with internal color flow and isthmus has nodule 1.7 cm with soft tissue and fluid. Not great from what I have seen on internet but also not definite of anything. I do not like waiting for another three weeks!
> 
> Endo was slightly hesitant to consider needle biopsy as I am on blood thinners; however, other doctor said they can help with the meds to make biopsy happen. I have my DD#2 wedding in early June and have a trip to Germany planned in July. What are my chances!!! Just looking for some ideas and guidance!
> 
> T4 was 0.99 (normal 0.89 - 1.76); TSH was 3.151 (normal 0.400 - 4.200); thyroid peroxidase 0.3 (normal 0.0 - 9.0)
> 
> As far as the nodules go, the right contained nodules (subcentimeter) and the left contained only one as well as the isthmus contained only one or at least that is what report mentioned. Perhaps more subcentimeter nodules but not listed."  from Haimia earlier in this thread!
> 
> Okay, so I saw the endo yesterday.  As he is looking at the bloodwork, in particular the FT4, he comments "hmmm, that's interesting"  - SO what the heck does that mean?  He is rerunning TSH and FT4 to double check the results!!
> 
> I also have a FNA scheduled for the 10th with endo follow up on the 16th.  He wanted to do follow-up in six weeks, but I said "that long"  then suggested 4 weeks and I said "that long" so we got it at just two weeks.  Won that one!



All I can say for this is that the T3 at 1.88 is hyper it is opposite of how you would think and the lower numbers are hyper and higher are hypo.  T4 and T3 are in range closer to hyper which is not bad if you feel good. It is the TSH that is weird when compared to the other numbers because it is normal but closer to hypo.  Did your endo redo the tests?  How did they come back the second time?   

I never had nodules so I can't help there but I do know of someone who had so many nodules that the surgeon said it didn't look good for her and felt it was cancerous but the tests came back that it wasn't so don't give up hope.

As for your plans never put your life on hold.  Keep making plans and living you can not put it on hold because of a stupid thyroid, right? You do that and you are bound to become depressed.


----------



## Christine

angwill said:


> All I can say for this is that the T3 at 1.88 is hyper it is opposite of how you would think and the lower numbers are hyper and higher are hypo.  T4 and T3 are in range closer to hyper which is not bad if you feel good. It is the TSH that is weird when compared to the other numbers because it is normal but closer to hypo.  Did your endo redo the tests?  How did they come back the second time?



Actually the T3 and T4 tests are not opposite of what you would think.  Only the TSH is that way.  TSH is low = HYPER.  TSH is high = HYPO.   For T3 and T4 measurements, those are the direct measurements of the thyroid hormones.  If they are low, they you are hypo.


----------



## angwill

Christine said:


> Actually the T3 and T4 tests are not opposite of what you would think.  Only the TSH is that way.  TSH is low = HYPER.  TSH is high = HYPO.   For T3 and T4 measurements, those are the direct measurements of the thyroid hormones.  If they are low, they you are hypo.



Funny my doctor must not know how to read the tests then as I just got mine done and she explained it opposite of what you are saying.  I will have to talk to her about it when I see her in a few months.


----------



## talulabelle

ok - so my Drs office just called and said the ultrasound was "benign".  I asked "what was benign?"  thinking they meant the nodules or some mass.  And the dumb secretary said "the ultrasound"  uh-huh.  I mean - it's good to hear there was nothing wrong - but what do they mean by that - and why is my thyroid so large?   I hate doctors offices.


----------



## mrsklamc

angwill said:


> Funny my doctor must not know how to read the tests then as I just got mine done and she explained it opposite of what you are saying.  I will have to talk to her about it when I see her in a few months.



I know sometimes I know exactly what I mean to say but it comes out the exact opposite.  But yes, the lower your TSH the more hyper you are.


----------



## mrsklamc

talulabelle said:


> ok - so my Drs office just called and said the ultrasound was "benign".  I asked "what was benign?"  thinking they meant the nodules or some mass.  And the dumb secretary said "the ultrasound"  uh-huh.  I mean - it's good to hear there was nothing wrong - but what do they mean by that - and why is my thyroid so large?   I hate doctors offices.



There are any number of thyroid disorders, unfortunately, but benign just means 'not cancerous.' So yay- although it can be frustrating figuring out what ELSE is going on. Although many people have nodules that don't bother them at all.


----------



## mrsklamc

luvmarypoppins said:


> h
> 
> Happy to report that there is endo success!! They called and gave me a visit in mid July. I usually go the end of the month, but I will take it. Only bad thing is the week before that I need to get the sono is the week I am teaching VBS at my church. Afte dealing with 20 3rd graders I will be happy to rest on the table for about 20 min
> 
> My ds3 just found out that he was not accepted into his Number 1 choice nursing school. Oh well. He wa accepted into about 4 or 5 others. He has it narrowed down to 2. One an RN and one a BSN. The BSN he needs to board and it will be like 99k. The RN program is cheap and he could transfer to a BSN bridge program at another college. Decisions, decisions.
> So glad I am not on 200 synthroid because if I heard the 99k price with that I would have really freaked.


 

So glad he has some options.


----------



## mrsklamc

Haima- sorry no one responded to you. Unfortunately your symptoms are outside of my area of knowledge. Although maybe that's NOT unfortunate cause what I know about is pretty much thyroid cancer. 

My potassium is low- neither of my doctors was too worried about finding out why. Anyone else had this symptom?


----------



## luvmarypoppins

Haima - sorry I am clueless as far as the numbers go. Usually my endo will either tell me the numbers or have the secretary or nurse call and just say, oh your numbers are good or ok etc. When you say the biopsy is the 10th, do you mean today?? If so, wishing you all the best. Its good that hopefully you will get some definitive answers from this. Although my first biopsy was inconclusive, so I had to have 2 more, the third one being a core biopsy, but I had 2 solid tumors. Wishing you all the best.

talulabelle - glad you got a good ultrasound report. Those are the best!!

Well I am back from the oncologist. She said all is well. She also observed my wonderful tearing eye. Told her I was at the surgeon, need surgery etc. She says I should get it done because you have to worry about infections etc. I didnt want to get into it with her. The eye surgeon told me it could wait as long as there were no infections (which I havent had any)

She wants the endo to check my thyroglobulin in July. (I have to look but I think the endo already ordered that test for me). If its not on my lab sheet I will call and ask ahead of time)

The oncologist said her plan is for next year to give me two thyrogen shots and a blood test again. Of course, you know my oncologist never has a shortage of thyrogen. That will happen sometime next June. Made sure it was after our Disney trip, No diet, just the shots.


----------



## Christine

angwill said:


> Funny my doctor must not know how to read the tests then as I just got mine done and she explained it opposite of what you are saying.  I will have to talk to her about it when I see her in a few months.



Yeah, you should.  TSH is the only one of the thyroid tests that is "inverse".  That's because TSH is not a true thyroid hormone, it is a pituitary hormone.  So if you are hypo, the pituitary pumps out a lot of TSH to try to make your thyroid work--hence, high TSH means low thyroid.  If you are hyperthyroid, the pituitary puts on the breaks and shuts down TSH production so low TSH means HIGH thyroid.

The other hormones:  T3 and T4 are direct thyroid hormones and the level of them is measured in the bloodstream.  If they are low, you just don't have enough, so hypo.


----------



## Haimia

Thanks, everyone, for your help.  I know sometimes a post gets overlooked.  Not a problem.  Just trying to find out information as this is all new to me.  

Endo is thinking I am hypo but the tests confused him.  He was looking at the FT4 and says "hmmm, that's interesting."  No explanation.  I had the TSH and FT4 tests redone per endo.  The results are:
                TSH 2.233  mclU/ml   (0.400 - 4.200)
                FT4 1.10    ng/dL      (0.89 - 1.76)

Yes, also had the FNA biopsy yesterday.  The worst part was the disinfectant used to clean my neck off then covered my face with the sterile cloth - all I could smell was the stinky disinfectant - Needed Air!!! ugh.  They took two samples from each of the two larger nodules.  Results to get at the doctor by next Wednesday (my next endo appointment).


----------



## Christine

Haimia said:


> Thanks, everyone, for your help.  I know sometimes a post gets overlooked.  Not a problem.  Just trying to find out information as this is all new to me.
> 
> Endo is thinking I am hypo but the tests confused him.  He was looking at the FT4 and says "hmmm, that's interesting."  No explanation.  I had the TSH and FT4 tests redone per endo.  The results are:
> TSH 2.233  mclU/ml   (0.400 - 4.200)
> FT4 1.10    ng/dL      (0.89 - 1.76)
> 
> Yes, also had the FNA biopsy yesterday.  The worst part was the disinfectant used to clean my neck off then covered my face with the sterile cloth - all I could smell was the stinky disinfectant - Needed Air!!! ugh.  They took two samples from each of the two larger nodules.  Results to get at the doctor by next Wednesday (my next endo appointment).



Your TSH and FT4 actually look very good.  You are right in the middle of both ranges.


----------



## luvmarypoppins

Haimia - glad to hear the FNA is over. Wow, I never had a cloth on  my face. I have seen them do that with pic line insertions One being my hospital roomie once.  I think that would have freaked me out. Needles dont bother me in the least.

Wishing you all the best. I am sure next wed. cant come soon enough for you. Waitng is the hardest for sure. Hang in there.


----------



## mrsklamc

Just heard that Yahoo's ex or soon to be ex CEO has thyca. They say it's why he's stepping down but unless it's anaplastic I would guess it's has more to do with lying about his academic records.


----------



## sjlupin

Hi!

I can't believe I found this thread!! I didn't know you all were here! 

I had a complete thyroidectomy on March 8th and it was cancer (multiple cancerous nodules in each lobe). I am having my RAI dose tomorrow. Have been on LID for a week and had two Thyrogen shots - one today and one yesterday. 

I recently was told I had to have a whole body scan next Thursday. Can anyone tell me what that is like? Do I have to be given more RAI for it???


Thanks!
Sandy


----------



## luvmarypoppins

Sandy - welcome, but sorry you have to be here. I am surprised you only had to be on the diet for a week. I had to be on it for 2 weeks and I think Micayala had to be on it almost 3.

But glad you got thyrogen. That is all I have always gotten too.

The scan you will just lay on the table for a long time maybe up to an hour? Some places let you bring music etc, I just rested and sang my favorite contemporary christian songs to myself. The one part of the machine will get very close to your face. Just lay still and close your eyes. Its not bad, just weird.

How much is your RAI dose going to be? I suppose they gave you all the instructions etc. 

Wishing you all the best. Keep us informed when you can.


----------



## sjlupin

Thanks for the welcome! 

I was surprised about the diet too. I started last Wed and have to continue through this coming Friday. Originally he said 1-2 weeks prior to RAI, but ultimately said 1 week was enough. Not sure what the deciding factors where for that? 

I am sooo glad I got the Thyrogen too. I wasn't sure awhile back - it didn't look like insurance would cover it and it is $2500!  It turns out it is covered and I was able to do it and not go off my Synthroid. Phew!

I'm not sure what my dose is. I was wondering that as well. I'll try to find out tomorrow. 

Thanks for the info on the scan. I appreciate it!

I'll check in while I am isolated. I am going to be LONELY!!! I hate being cooped up and/or away from my family. I will actaully be in my house, but will just be staying away from everyone. It will make me sad. Lol


----------



## 1Grumpy9

I head back to the Endo tomorrow for a check up to see how things are going.  I will probably have to go get bloodwork tomorrow after my appt.  I have been feeling pretty good (still not sleeping too well..actually not really wanting to sleep at a normal time).  Hopefully everything is going to be good.  This is my first visit in her new office (her very own practice).


----------



## sjlupin

I had my RAI dose this morning. I think the dose was 32.4. He said it was lower than he thought he was going to give me. He said there was new research and guidlines released a few weeks ago that lead to a lower dose and lesser restrictions afterwards. 

He was telling me too that they feel that for Thyroid Cancer patients, the RAI passes through within the first 24 hours (since we have very little thryoid tissue to absorb it, we hold on to it less time, verses someone doing RAI due to hyperthyroid with the gland still present). I only have to sleep alone for 3 night and stay away from general public for 5 days. I can go back to the office on Monday!

So, I basically feel ok. My mouth is a little sore. The tip of my tongue feels a bit weird (almost numb-ish) and I have a few sores inside my upper lip. My mouth is susceptable to this type of thing when I am stressed or eat alot of acidic foods - all of which have been true lately with the LID, etc. So, it could be coincidence.   Also, I am really, really tired this morning. I think that just may be a result of stress/anxiety. Anyone else have mouth issues after RAI? Just curious.

Sandy


----------



## Christine

sjlupin said:


> Hi!
> 
> I can't believe I found this thread!! I didn't know you all were here!
> 
> I had a complete thyroidectomy on March 8th and it was cancer (multiple cancerous nodules in each lobe). I am having my RAI dose tomorrow. Have been on LID for a week and had two Thyrogen shots - one today and one yesterday.
> 
> I recently was told I had to have a whole body scan next Thursday. Can anyone tell me what that is like? Do I have to be given more RAI for it???
> 
> 
> Thanks!
> Sandy



The scan is the easy part.

It's not like an MRI where you are closed it.  You lay on a table and, depending on the equipment, the camera moves over and under you.  It takes about 45 minutes and is quite peaceful.  You won't take any more RAI other than the dose you took today.  Some places will tell you right away what is on the scan and some places make you wait. 

Good luck, really, the hard part is over.


----------



## sjlupin

Thanks Christine!

I was able to ask them a few questions about the scan this morning. They showed me the machine and confirmed that I don't have to get more RAI. My endo was funny he said they feel like since patients doing this have had the RAI they feel that they might as well take advantage and do the scan. Let's just hope they don't find anything else!


----------



## Christine

sjlupin said:


> Thanks Christine!
> 
> I was able to ask them a few questions about the scan this morning. They showed me the machine and confirmed that I don't have to get more RAI. My endo was funny he said they feel like since patients doing this have had the RAI they feel that they might as well take advantage and do the scan. Let's just hope they don't find anything else!



Yes, a post-ablative scan.  A very good idea and rarely do they ever find anything else.

I also has the 30 mci dose on my first RAI treatment.  It didn't burn out the entire thyroid for me so I had to have more treatments the next year.  I hope it works for you.

Doing the LID for 1 week is actually fine as long as you do it well.  I have heard that they recommend doing it for 2 weeks prior to the RAI dose because they feel that it takes patients the first week to "get it right" and by the second week they've mastered it.  I think that's BS.  By the second week, they are insane!!!  Anyway, it takes approximately a week for iodine to be secreted from your body so one week should be just fine as long as you were good at it!


----------



## luvmarypoppins

Well tomm. afternoon dh and I will be in Disney World I am weary of washing and getting ready to pack. Dh just got back from Calif. this morning. 

I hope the swimming at Storm A long Bay helps my arm a little. 

Its def. going to be about the food - Brown Derby, Le Cellier, Chefs De France,Kona, Liberty Tree Tavern, Tutto Italia (For My B day) and Citricos (for our anniv). and Cape May Bufffet because dh must have crab legs.

We are going to the Star Wars Parade and the Flower and Garden on Sat . (meeting one of the breast cancer disers there - her mom has bc).


----------



## Christine

luvmarypoppins said:


> Well tomm. afternoon dh and I will be in Disney World I am weary of washing and getting ready to pack. Dh just got back from Calif. this morning.
> 
> I hope the swimming at Storm A long Bay helps my arm a little.
> 
> Its def. going to be about the food - Brown Derby, Le Cellier, Chefs De France,Kona, Liberty Tree Tavern, Tutto Italia (For My B day) and Citricos (for our anniv). and Cape May Bufffet because dh must have crab legs.
> 
> We are going to the Star Wars Parade and the Flower and Garden on Sat . (meeting one of the breast cancer disers there - her mom has bc).



Enjoy!  Citricos has always been a must-do for us.  We really love the place.  Are you going to do a dining report?  I love reading those.


----------



## Haimia

Went to endo yesterday.  Nodules are BENIGN!!  But, thyroid is coming out anyway due to the size/location of the nodules.  One is on the isthmus and I can feel it when I swallow.  I had been blaming it on cervical neck surgery from about a year ago (the doctor shoved aside the stuff in the way to get to the spine).  The other nodule is now real prominent since the FNA.  So, thyroid comes out in August (after wedding and vacation!).

I also had to get all bloodwork done again, since endo is a little unsure of how true my other results were (TSH, FT4 and FT3).  I will be calling him in a week if he does not call me first.  

I am so glad that DD#2 wedding can go ahead with no hitches or surgeries mixed in.  Also, Germany trip is untouched!  So, August will be plenty soon enough for me!  Thank you all, for your help and understanding with my posts.


----------



## Christine

Haimia said:


> Went to endo yesterday.  Nodules are BENIGN!!  But, thyroid is coming out anyway due to the size/location of the nodules.  One is on the isthmus and I can feel it when I swallow.  I had been blaming it on cervical neck surgery from about a year ago (the doctor shoved aside the stuff in the way to get to the spine).  The other nodule is now real prominent since the FNA.  So, thyroid comes out in August (after wedding and vacation!).
> 
> I also had to get all bloodwork done again, since endo is a little unsure of how true my other results were (TSH, FT4 and FT3).  I will be calling him in a week if he does not call me first.
> 
> I am so glad that DD#2 wedding can go ahead with no hitches or surgeries mixed in.  Also, Germany trip is untouched!  So, August will be plenty soon enough for me!  Thank you all, for your help and understanding with my posts.



Congratulations on the mostly good news and glad you can get it worked out with everything else going on!


----------



## sjlupin

GET TO GO OFF LID TOMORROW!!!!!! 

I am soooo happy. I just wish my mouth wasn't so sore!  Hopefully I will be able to eat some yummy food!


----------



## mrsklamc

sjlupin said:


> GET TO GO OFF LID TOMORROW!!!!!!
> 
> I am soooo happy. I just wish my mouth wasn't so sore!  Hopefully I will be able to eat some yummy food!



So happy for you! My tastebuds burned out about a week post RAI (higher dose though) so if that happens, don't worry, they will come back eventually.


----------



## sjlupin

Phew! Over the last few days I have read through this ENTIRE thread - all pages, every post. It was fascinating - like reading a novel, stepping through all of your journeys over the past number of years. I couldn't 'put it down'! 

Oh, how I wish I had found you back in January when I started this journey!! You are all such amazing and strong women and men!!! Having read all of this, I sort of feel like I 'know' you all! So I thought maybe I'd sort of 'introduce' myself, if that is ok?

My name is Sandy and I am 45. I am a born and bread New Englander   DH  and I have been married 20 years and have 3 wonderful kids - DS17, DD15 and DD12 (almost 13!). I am a software enginner and work full time. I also coach my DDs soccer teams (2 teams at the moment!) and I play on an over 40s womens soccer team (I am a goalie!). It probably goes without saying, since I am on the disboards, that we LOVE Disney!!

In January - the 18th to be exact - I went to my ENT for my regular ear check. I have had alot of ear infections as an adult and I see my ENT every 3-4 months, which keeps things in check. Just before he was leaving, I - sort of off the cuff - asked him if I could ask a question about my allergies. I was having an allergy symtpom involving my throat, so thought I'd ask him. He said sure and then said let me take a quick peek in your nose and throat and feel your lymphs. When he did that he said 'huh, your thyroid is enlarged'. I said, 'yeah I've been told that'. See, I have been hypo for about 10 years, with my dose of Sythroid rising every now and them over time. My GP has said that it was enlarged before, but never offered to follow up on it, just tested my TSH and raised my meds. I assumed the enlargement was due to the hypo. In hindsight I so wish I had pushed the issue. I realize now that the enlarged thryoid was bothering me far more than I realized - I could not stand anything around my neck, was starting to have a feeling of 'pressing' on my windpipe and I also realize now it was affecting my breathing.

Anyhoo ... he said 'what did your ultrasound show' ... 'I haven't had an ultrasound' ... 'I think we should do an ultrasound'.  

So, 2 days later I had the ultrasound. The doc had told me if there was anything to follow up on they would call right away, otherwise I would just get a letter. 2 loooong weeks later, I still had gotten neither! I called the office and she looked up my test results and said 'I'll have to have someone call you back'. Ugh. I had convinced myself that since he didn't call, all was well. He finally called be back that Sunday - Super Bowl Sunday - and said the ultrasound showed nodules and we would beed to do a biopsy. I was SO bummed. Then my beloved Patriots went on to lose ... not a great day 

Scheduling the FNA was a pain. I had a business trip to Reston, VA and then was leaving for a family vacation to Florida the week we wanted to do it. I was able to get in on Friday afternoon - got home from VA on Thursday, had the FNA Friday and flew to Florida Saturday. It's funny in pics from vacation you can see my bruising from the FNA. Lol.

We got home from Florida on Friday and my doc called me Saturday morning. The biospy showed Atypical cells - inconclusive for cancer. He said we needed to take it out. 

Surgery was on March 8th. They did the frozen section during and he was able to tell me when I woke up that it was cancer. I was crushed. Funny - I thought I was completey prepared to hear that, even said to DH on the way to the hospital 'I really have a feeling it is cancer' but it still hit me hard to be told that I did. I was in the hospital 1 night. Had some small issues - mostly with my throat. I was having a lot of weird wheezing that they didn't like and coughing. My throat was incredibly sore. I couldn't really eat much solid for about 4 days. Had voice issues too, but that got better very slowly - seems pretty good now.

Full pathology showed stage 1 papillary. Multiple sites in each node. He removed 13 lymphs and 1 parathyroid and ALL were totally clear. 

All in all, my recovery has been really good. I am proud to say that just 8 weeks post-op I travelled to WDW with DS17 and we participated in the Expedition Everest Challenge! And we didn't do too badly all things considered!! We had a blast - mom and son long weeked at the World! 

As I mentioned ealier, I just did RAI on Wednesday. I am finally off LID. I just ate a piece of toast with butter - never thought something so simple could taste SO good! Kids have a half day today - DS17 said when he gets home he will go out and get me something good to eat. I think I really want something like a bacon egg and cheese sandwhich! Mmmm.

Wow ... that was long. If you have read this far - God bless you!! It is so wonderful to have found this thread and to be able to 'talk' to people that understand. THANK YOU ALL!!

Sandy


----------



## Christine

sjlupin said:


> Phew! Over the last few days I have read through this ENTIRE thread - all pages, every post. It was fascinating - like reading a novel, stepping through all of your journeys over the past number of years. I couldn't 'put it down'!
> 
> Oh, how I wish I had found you back in January when I started this journey!! You are all such amazing and strong women and men!!! Having read all of this, I sort of feel like I 'know' you all! So I thought maybe I'd sort of 'introduce' myself, if that is ok?
> 
> My name is Sandy and I am 45. I am a born and bread New Englander   DH  and I have been married 20 years and have 3 wonderful kids - DS17, DD15 and DD12 (almost 13!). I am a software enginner and work full time. I also coach my DDs soccer teams (2 teams at the moment!) and I play on an over 40s womens soccer team (I am a goalie!). It probably goes without saying, since I am on the disboards, that we LOVE Disney!!
> 
> In January - the 18th to be exact - I went to my ENT for my regular ear check. I have had alot of ear infections as an adult and I see my ENT every 3-4 months, which keeps things in check. Just before he was leaving, I - sort of off the cuff - asked him if I could ask a question about my allergies. I was having an allergy symtpom involving my throat, so thought I'd ask him. He said sure and then said let me take a quick peek in your nose and throat and feel your lymphs. When he did that he said 'huh, your thyroid is enlarged'. I said, 'yeah I've been told that'. See, I have been hypo for about 10 years, with my dose of Sythroid rising every now and them over time. My GP has said that it was enlarged before, but never offered to follow up on it, just tested my TSH and raised my meds. I assumed the enlargement was due to the hypo. In hindsight I so wish I had pushed the issue. I realize now that the enlarged thryoid was bothering me far more than I realized - I could not stand anything around my neck, was starting to have a feeling of 'pressing' on my windpipe and I also realize now it was affecting my breathing.
> 
> Anyhoo ... he said 'what did your ultrasound show' ... 'I haven't had an ultrasound' ... 'I think we should do an ultrasound'.
> 
> So, 2 days later I had the ultrasound. The doc had told me if there was anything to follow up on they would call right away, otherwise I would just get a letter. 2 loooong weeks later, I still had gotten neither! I called the office and she looked up my test results and said 'I'll have to have someone call you back'. Ugh. I had convinced myself that since he didn't call, all was well. He finally called be back that Sunday - Super Bowl Sunday - and said the ultrasound showed nodules and we would beed to do a biopsy. I was SO bummed. Then my beloved Patriots went on to lose ... not a great day
> 
> Scheduling the FNA was a pain. I had a business trip to Reston, VA and then was leaving for a family vacation to Florida the week we wanted to do it. I was able to get in on Friday afternoon - got home from VA on Thursday, had the FNA Friday and flew to Florida Saturday. It's funny in pics from vacation you can see my bruising from the FNA. Lol.
> 
> We got home from Florida on Friday and my doc called me Saturday morning. The biospy showed Atypical cells - inconclusive for cancer. He said we needed to take it out.
> 
> Surgery was on March 8th. They did the frozen section during and he was able to tell me when I woke up that it was cancer. I was crushed. Funny - I thought I was completey prepared to hear that, even said to DH on the way to the hospital 'I really have a feeling it is cancer' but it still hit me hard to be told that I did. I was in the hospital 1 night. Had some small issues - mostly with my throat. I was having a lot of weird wheezing that they didn't like and coughing. My throat was incredibly sore. I couldn't really eat much solid for about 4 days. Had voice issues too, but that got better very slowly - seems pretty good now.
> 
> Full pathology showed stage 1 papillary. Multiple sites in each node. He removed 13 lymphs and 1 parathyroid and ALL were totally clear.
> 
> All in all, my recovery has been really good. I am proud to say that just 8 weeks post-op I travelled to WDW with DS17 and we participated in the Expedition Everest Challenge! And we didn't do too badly all things considered!! We had a blast - mom and son long weeked at the World!
> 
> As I mentioned ealier, I just did RAI on Wednesday. I am finally off LID. I just ate a piece of toast with butter - never thought something so simple could taste SO good! Kids have a half day today - DS17 said when he gets home he will go out and get me something good to eat. I think I really want something like a bacon egg and cheese sandwhich! Mmmm.
> 
> Wow ... that was long. If you have read this far - God bless you!! It is so wonderful to have found this thread and to be able to 'talk' to people that understand. THANK YOU ALL!!
> 
> Sandy



Sandy,

Thanks for telling your story.  It sounds as if it went as well as it could and everything was confined to the thyroid.    

It's funny, I think my "go to" food after the LID was always a bacon, egg, and cheese biscuit from McDonalds!

Your thyroid cancer was found much like mine--have a routine visit for something else.  

Sounds like you are on the upside of things now and you should be care-free for while.  Please hang around with us.  This is not a "busy" thread but it helps to have other people chime in with their experiences occasionally.

Christine


----------



## Haimia

sjlupin - sounds like a lot that you went through, but so glad it is turning out good for you.  It appears like your story and mine are often how it is found - not a direct problem, but as a side check or other condition revealing it.


----------



## luvmarypoppins

Quick post from the Beach Club, our last day

Got to see DISers Sha from the BC thread and Tuffcookie

Hot, swam twice in Storm A Long Bay

Best thing we saw so far, Cinderellas carriage, the horses and bride and groom right here

Lots of good food

My bones hurt so much


----------



## sjlupin

LMP - sounds great! We have stayed at the Beach Club 3 times and Stomalong Bay is SO awesome!

Can't wait to hear more about your trip and the FOOD!!


----------



## sjlupin

Hi guys!!  

I had my scan today. It was quick and easy. I talked to my doctor this afternoon and it was totally CLEAN!!!! I said to him 'so at this point can I say I am cancer free?' - he said 'absolutely!'. 

I am on CLOUD 9 .... so so so happy!

I see him in 4 months and he'll check my thyroglobulin then. Till then and I am in the clear!!!!!  


Sandy


----------



## mrsklamc

sjlupin said:


> Hi guys!!
> 
> I had my scan today. It was quick and easy. I talked to my doctor this afternoon and it was totally CLEAN!!!! I said to him 'so at this point can I say I am cancer free?' - he said 'absolutely!'.
> 
> I am on CLOUD 9 .... so so so happy!
> 
> I see him in 4 months and he'll check my thyroglobulin then. Till then and I am in the clear!!!!!
> 
> 
> Sandy



Hooray! I had two wait two long years for those words!!!  Enjoy celebrating!


----------



## kimmie

Hi Sandy!

Glad to hear that your scan was clean!

Your story sounds like mine too!  I went for a routine physical and my GP found that my throid was enlarged...the rest is history!


----------



## sjlupin

Thanks!! 

Micayla - I know ... you had a rough time! I honestly almost felt guilty coming here to post this yesterday. My journey through this was just 5 months and was pretty 'text book'. It hasn't been an easy 5 months, but compared to what some of you guys have been through it was nothing!!!


----------



## Christine

sjlupin said:


> Thanks!!
> 
> Micayla - I know ... you had a rough time! I honestly almost felt guilty coming here to post this yesterday. My journey through this was just 5 months and was pretty 'text book'. It hasn't been an easy 5 months, but compared to what some of you guys have been through it was nothing!!!



Hi Sandy!  I know you're on Cloud 9 so I don't want to rain on your parade but I do want to clarify something so that, if anyone down the line with thyroid cancer reads these posts, that this is clear.

So, just a few weeks ago you had your RAI treatment of 30 mci, correct?  What you just had is a post-ablative scan, correct?  From what every doctor told me over the years, you don't TRULY get a clean scan until you have your NEXT scan.  You just had your ablation, it literally takes a few months to kill off your residual thyroid tissue.  When you had the post-ablative scan, they take advantge of the fact that you have had a large dose and they use the scan to look for any distant metastises (sheesh I can never spell that word) that might be there that would not show up on a tracer dose.  I'm betting that when they scanned you, the tech saw a nice beam of light in your neck where you thyroid used to be and was in the process of being obliterated and then they saw NOTHING anywhere else.  For distant "mets" that's a clean scan.

Your next scan is going to be the one that gets you a victory.  In 6-12 months, they will give you a tracer dose and scan you again.  They will be hoping to not see that beam of light in your neck.  If there is no light in the neck, your 30 mci will have done its job.  If there is anything that lights up, it won't have completely ablated the residual. 

So, while you have good reason to be happy and celebrate, I do feel that my above text is a bit of killjoy but I just want to make sure we have accurate info posted.  And please, if I have misunderstood any of your treatments/timing please let me know.


----------



## Haimia

May 1, 2012 - T4 was 0.99 (normal 0.89 - 1.76) 
                    T3 free was 1.88 (normal is 2.2 - 4.0)
                    TSH was 3.151 (normal 0.400 - 4.200) 
                    thyroid peroxidase 0.3 (normal 0.0 - 9.0) 

Ultrasound showed multi-nodular right lobe, left lobe has nodule 2.5 cm with soft tissue and fluid with internal color flow and isthmus has nodule 1.7 cm 

May 11, 2012 - TSH 2.233 mclU/ml (0.400 - 4.200)
                      FT4 1.10 ng/dL (0.89 - 1.76)

FNA - two nodules, four samples, all benign

May 16, 2012 - TSH 2.8 (0.400 - 4.200)
                      FT4 .51 (0.89 - 1.76)
                      FT3 2.26 (2.2 - 4.0)

I have listed my prior bloodwork and the most recent from 5-16-12.  I am to start 50 mcg of Synthroid.  Any thoughts from those of you out there with knowledge?  Thyroid is to be removed in August 2012.


----------



## mrsklamc

sjlupin said:


> Thanks!!
> 
> Micayla - I know ... you had a rough time! I honestly almost felt guilty coming here to post this yesterday. My journey through this was just 5 months and was pretty 'text book'. It hasn't been an easy 5 months, but compared to what some of you guys have been through it was nothing!!!



Please DO NOT feel guilty. I did have a harder road than some, but a far easier road than others, and I am ecstatic that you got good news.


----------



## mrsklamc

Haimia said:


> May 1, 2012 - T4 was 0.99 (normal 0.89 - 1.76)
> T3 free was 1.88 (normal is 2.2 - 4.0)
> TSH was 3.151 (normal 0.400 - 4.200)
> thyroid peroxidase 0.3 (normal 0.0 - 9.0)
> 
> Ultrasound showed multi-nodular right lobe, left lobe has nodule 2.5 cm with soft tissue and fluid with internal color flow and isthmus has nodule 1.7 cm
> 
> May 11, 2012 - TSH 2.233 mclU/ml (0.400 - 4.200)
> FT4 1.10 ng/dL (0.89 - 1.76)
> 
> FNA - two nodules, four samples, all benign
> 
> May 16, 2012 - TSH 2.8 (0.400 - 4.200)
> FT4 .51 (0.89 - 1.76)
> FT3 2.26 (2.2 - 4.0)
> 
> I have listed my prior bloodwork and the most recent from 5-16-12.  I am to start 50 mcg of Synthroid.  Any thoughts from those of you out there with knowledge?  Thyroid is to be removed in August 2012.



I'm sorry but you're way over my head! My levels were all fine pre-surgery and now TSH is the only one they watch.


----------



## luvmarypoppins

Haimia - I am so clueless as far as numbers are concerned, but yours all look within range. Just make sure you have a good experienced surgeon

Sandy - I am so happy to hear your scan was clean. Heres a  for you. As Chrstine said, my oncologist too told me the first scan was important, but then the 1 year follow up scan was more important because that is when you see if the rai really did its job. They told us it could take up to a year to work. I figure any good news is welcome and a step in the right direction too. 

I will probably do a little dining report from our trip. The worst place was Tutto, so disappointing in the food area. The guys singing Happy Birthday to me was awesome. Our favorite - Citricos!!


----------



## luvmarypoppins

Well if anyone wants to see a pic of me, go to the breast cancer thread on the community board, page 43. You can see that my neck looks weird.

Oh and I am the oldest one here I think, enough said


----------



## Christine

luvmarypoppins said:


> Well if anyone wants to see a pic of me, go to the breast cancer thread on the community board, page 43. You can see that my neck looks weird.
> 
> Oh and I am the oldest one here I think, enough said



Are you sure you're the oldest?  I might be....


----------



## sjlupin

Again - thanks everyone. 

I do realize that this is the not the complete 'all clear' but I am still beyond happy with the results thus far. No distant mets and nothing else lurking! When I was on the scan table all I could think of was my SILs large brain tumor that was found incidentally a few years back.  She is great now, but went through hell for a while.

Hope everyone had a fantastic long weekend!


----------



## luvmarypoppins

I am done posting my dining reviews if anyone wants to read them. 

Thanks Christine for stoping by I am glad I got them done now. I always forget something if its too late after the trip.

Now later I am doing a Disney Survey they sent me. Wonder what they do with all the comments you make? etc.

Also have to start making our adrs for the Nov. trip and trying to work out something for Food and Wine with my dh ff miles, but that is turning into a mess etc. 

At least I get the month of June off then its blood test, sono and endo in July. 

I still am up in the air about the eye surgery. Ds22 will not be allowed to drive for a long time, we just dont know for how long yet. That is still up in the air, so I would really have to ask the eye dr. how long I couldnt drive etc. since I will have to take him to school or the train.


----------



## dischick4778

Been a while since I've posted here but I hope everyone is doing well.  Honestly, I have not been on the computer much, trying to live in the moment and enjoy all of my time with my husband and son.  Things are going well with me, but no matter how much time passes since my surgery I still feel so fortunate to be here and to be well.  

I still have trouble with my eyes.  Dr. says there isn't much he can do for my fried tear ducts.  I use drops a lot and he puts in the implants every so often.  It doesn't help much.

I finally let my surgeon talk me into fixing my scar.  He's a bit of a perfectionist and it bothered him that it wasn't smooth.  He did an in office procedure to scrape it flat and since then I've visited twice and he has given me neck injections to reduce the redness.  I was hesitant to do this because I kept thinking the cancer would come back and I'd need surgery again.  But I finally felt safe enough to do it.  And it does look better so I'm happy with it.

My endo says I do not need a scan this year.  She did a neck sono back in February and it was clear.  My numbers are good and she is happy.  I'm currently down to 175 synthroid.  

Anyway, hope all is well and I hope to log on more often and catch up with everyone.  Stay healthy!


----------



## luvmarypoppins

Jenn - so good to see you. Glad to hear you are doing well despite the eye problems and I am so with you on those as you know from my posts. 

Sounds like you were brave to go through that scar thing. I am wanting to be asleep for anything and evrything if it hurts etc. I am turning into a scaredy cat who has had it with pain I think.

I know your trip is soon to AKL and I hope you and your family have a great time.

Its good to hear you are not having a scan this year. Just wondering what your endo/onc. plan of action is, especially since you have the rare variant too.

My onc. said she might only consider a scan at the 5 year mark. Up until the first clean scan and then its only thyrogen and blood testing after that. I think I had that done at year 2 and now at year 3 post rai date, not surgery date. I get nothing this year, year 3, just the normal sono and blood work,  Next year at year 4 I am getting thyrogen and blood work from the onc. in addition to the 6 month endo stuff.

Take care. Blessings to you always.


----------



## dischick4778

Good to hear from you luvmarypoppins!  

I had a scan last July, which was one year after my surgery.  This year my endo did the sono in Feb and said all was clear.  I have seen her every two months for blood work since my surgery.  So I guess that is how she monitors my situation.  Through blood work levels and the sono.  She said we would do a scan again at 5 years out unless there was cause to do it sooner (like something appearing in the sono or blood work).  This is the first time she told me to take  six months before coming back.  That feels like a good thing.  

We are excited for our upcoming trip to AKV.  We are leaving on July 9th.  I am so looking forward to it.  I cannot wait to relax, have fun, and eat good food.  I love vacation meals.  

I am going to read your dining reviews now.  And I am so jealous of your Nov. trip.  I used to go to F&W all the time until the year I got pregnant.  I haven't been back since then and I miss it.  I was hoping to get back to it this year but we are looking to buy a house so I probably won't want to spend the extra money.  Stay well!


----------



## dischick4778

LMP - read your dining reviews and loved them!  You mentioned something about FL water not mixing well with the cancer meds.  Can you tell me more about that?  I didn't notice anything specific during my trip last year but am curious what the effects are for you.


----------



## luvmarypoppins

Well I scheduled my sono. Its going to be July 9th,

 hmm Jenn, same day you are going to WDW. Where are you eating?? Of course I am disney obsessed with the food. I really think a lot of it has gone down in quality and up in price. I guess the only good thing would be if your take your little one to a character meal. Its air conditioned and then you dont have to wait out in the heat to meet those characters etc. We use to always go in August. I am sure the July heat is bad too. One word:  Pool!!!

Does anyone else feel like this??  You try to put the cancer in the back of your mind and then when you are making appts, it just puts it right back up there. Like right now I feel like a knot in my stomach. I am gonna have to have some serious prayer time later I think.  This is also right after I am teaching vbs, I think I will be exhausted and glad to lay on that table for 30 min.

Still trying to work out something for the F and W. That is not going well. Cant get a decent room or flights etc. I will wait a while longer. Hoping for an ap discount or that we can use some of dh ff miles for a hotel room. 

Hope everyone is doing well.


----------



## mrsklamc

luvmarypoppins said:


> I really think a lot of it has gone down in quality and up in price.



I agree. Food was never my 'thing' at Disney but I did have an Italian meal at Epcot years ago that was amazing. Honestly this latest ticket increase is getting kinda crazy too- kid's AP is the same as an adult's? Really? Makes me nervous that they are thinking of doing the same with regular tickets. Eventually they are going to price themselves out of the market, I think.


----------



## Christine

luvmarypoppins said:


> Does anyone else feel like this??  You try to put the cancer in the back of your mind and then when you are making appts, it just puts it right back up there. Like right now I feel like a knot in my stomach. I am gonna have to have some serious prayer time later I think.  This is also right after I am teaching vbs, I think I will be exhausted and glad to lay on that table for 30 min.



YES!!  This is a huge deal for me.  I put the cancer away and then the doctor's appointments roll around and it all becomes real again.  I'm lucky that I am so far out from my diagnosis that I don't see a doctor much anymore but, at least once a year, I'm in a big turmoil.  I *hate* it.  My whole sense of well-being is gone.

As for the Disney food, that sucks.  I've been getting a sense of that just reading the dining reviews.  I'm hoping that since I stick to mainly signature dining that I won't notice it as much.  I hope Citricos and Artist Point are as good as ever.  I sensed most of the disappointment with the moderate-type restaurants.

I have found two places off-site, yet close to Disney that were pretty good.  Both were in Celebration and it was so nice because they seemed "off the beaten path" and quiet.  Once was a diner that had something for everyone, and the other was a small Italian restaurant with a wood-fired oven that had some excellent food.  It was really nice to get away and have dinner there.


----------



## SingingMom

Christine said:


> YES!!  This is a huge deal for me.  I put the cancer away and then the doctor's appointments roll around and it all becomes real again.  I'm lucky that I am so far out from my diagnosis that I don't see a doctor much anymore but, at least once a year, I'm in a big turmoil.  I *hate* it.  My whole sense of well-being is gone.
> 
> As for the Disney food, that sucks.  I've been getting a sense of that just reading the dining reviews.  I'm hoping that since I stick to mainly signature dining that I won't notice it as much.  I hope Citricos and Artist Point are as good as ever.  I sensed most of the disappointment with the moderate-type restaurants.
> 
> I have found two places off-site, yet close to Disney that were pretty good.  Both were in Celebration and it was so nice because they seemed "off the beaten path" and quiet.  Once was a diner that had something for everyone, and the other was a small Italian restaurant with a wood-fired oven that had some excellent food.  It was really nice to get away and have dinner there.



It's been Almost 20 years since my cancer diagnosis, and I still feel like that every year before my endocrine appointment. I think it is natural. I pray and try to stay calm, and then let out that huge sigh of relief!  Hang in there!


----------



## Christine

SingingMom said:


> It's been Almost 20 years since my cancer diagnosis, and I still feel like that every year before my endocrine appointment. I think it is natural. I pray and try to stay calm, and then let out that huge sigh of relief!  Hang in there!



Oh wow, another "oldie"!!  I am at 17 years out.


----------



## SingingMom

Christine said:


> Oh wow, another "oldie"!!  I am at 17 years out.



Define "oldie"

I was 30 when I was diagnosed. (after graves disease and hepatitis caused by an allergic reaction to PTU. Such fun!)

Had my surgery that Feburary, got pregnant with our only child that November and had our daughter a week before my 31 st birthday. She'll be 19 in August and will be 50 !


----------



## Christine

SingingMom said:


> Define "oldie"
> 
> I was 30 when I was diagnosed. (after graves disease and hepatitis caused by an allergic reaction to PTU. Such fun!)
> 
> Had my surgery that Feburary, got pregnant with our only child that November and had our daughter a week before my 31 st birthday. She'll be 19 in August and will be 50 !



I was 31 years old.  My second child was about 8 months old, I was in a good groove, feeling great, continuing to go to college even though I had a 3 year old, a baby, and a full-time job.  That was the straw that broke the camel's back right there.  Took me YEARS to feel right.


----------



## SingingMom

Christine said:


> I was 31 years old.  My second child was about 8 months old, I was in a good groove, feeling great, continuing to go to college even though I had a 3 year old, a baby, and a full-time job.  That was the straw that broke the camel's back right there.  Took me YEARS to feel right.



I hear ya, with that "took me years" !  People without thyroid trouble can't appreciate the havoc it wrecks!  Thank the good Lord, I am doing much better, and have found an endocrinolgist who I am happy with. My original doctor was an ANGEL. When he left private practice for research, I hated the replacement, but foolishly stayed. This year I FINALLY changed and am much happier!


----------



## luvmarypoppins

Christine and Singing Mom - I am glad we all have both of you to look up too.

I hope I am around for many more years to come too.

Well today I made my first adr for our nov/dec trip. Le Cellier for lunch. Hmm, what is it about that chese soup and pretzel bread??

And my game plan for Tuesday...get up and start dialing around 7 am for the Candelight Proessional. I am going to try for Whoopi Golldberg, really not a fan, but our other choice was Neal Patrick Harris and we already saw him and there is one TBA, but I want to spend that night in MK for our last night etc.

Ds 20 found some old, really old rolls of films ad took them to get developed today. 

They was one of disney, so cute, chef mickeys etc. Well he said, heah mom, look here is your picture with a thyroid, you can really tell the difference,You dont have a big gap in your neck.

OK, gotta love cancer and neck dissections

Micayla - do you have a big gap?? 

I am thinking because the lst surgeon either cut out so much because that is where the 2nd tumor that was 4 centimeters was or it was from the other surgeon who told my dh he had to go in there and start chopping me up to save my life and look for the bleeder. Oh well. In that picture you can really see the puffiness though. Of course my gp never thought it was all that much and we all know how things went from ther for quite a few years. Never did a blood test etc. Just a sono once in a while.


----------



## mrsklamc

I'm so sorry you had to go through that! No, I don't have a big gap. I have a white scar from about an inch under my left earlobe , to just under the left side of my chin. It changes there, and for the last few inches it appears to just be the 'crease' in my neck.


----------



## luvmarypoppins

Well if you look at the breast cance on the community board thread page 43, does your neck look like that. You can see the large gap to the collar bone etc.


----------



## Christine

luvmarypoppins said:


> Well if you look at the breast cance on the community board thread page 43, does your neck look like that. You can see the large gap to the collar bone etc.



I just found your picture.  I actually passed it by at first because I was looking for someone with a horrible thyroid scar and couldn't find one!  But I did look harder at it and I do see an indentation.  If it is bad, then the picture is not showing it.  Really, it doesn't look bad.

I also have, in my mind, a bad indentation.  I see other people who have had thyroidectomies and they have a totally flat neck with just a hint of a scar.  Mine indents in right in the center where the collar bone meets. 

I went to an ENT once (who also is a plastic surgeon) for my sinuses and she was really interested in my scar.  She told me that the reason that it didn't turn out well was because when they remove the thyroid cartiledge, the overlying skin as nothing to stop it from attaching to the trachea and that's what mine did.  She said she could fix it easily but, at that point, I was not in the mood for any surgery.  No, it did NOT make my day that someone pointed out that my scar was not done right.

Anyway, I am fairly self-conscious about it but my friends swear to me that they don't even notice it.  As I age, I think it looks worse but really what am I gonna do about it.  One day, if I get savvy enough, I'll post a picture.


----------



## jepressley

Hi Everyone,

I have been reading your posts/stories on and off over the last several months. I've been recovering from a thyroidectomy due to papillary cancer 10/31/11. It has been a long and difficult road due at least in part to the fact that I was already sick with adrenal exhaustion when they found the cancer. Once I had the thyroid out it made me so much worse b/c the adrenals and thyroid work very closely together. So, long story short, after a long haul of finding the right dr. I have made tremendous progress and my adrenals are in much better shape. But, I am just now on a normal dose of medication (100 mcg) b/c my adrenals were so bad they couldn't handle the meds and I had to get them compounded in order to titrate up very slowly. 

Soo, I am really struggling with poor energy, depression, and generally feeling crummy. I am single and self-employed and just not able to go back to work --- but at a very, very slow pace (2hrs./week). I am feeling discouraged because I thought I would feel better by now but seems I am getting more tired. Just had new bloodwork done on Friday and will see my DO this week to get increased to 112mcg. (Still going slowly but not as slow as before!) My last TSH was 15 (about 2 mos. ago at 70mcg). I had free t3 and t4 tested also and can post the numbers and/or the new ones soon.

Anyway, you all seem to be a kind, caring, and knowledgeable group and I am hoping you can give me some input and encouragement. Specifically, is how I'm feeling "normal" for where I am in terms of dosage? Should all of this improve with time, more meds?

I really appreciate your time and feedback.

Thank you,
Jill


----------



## SingingMom

mrsklamc said:


> I'm so sorry you had to go through that! No, I don't have a big gap. I have a white scar from about an inch under my left earlobe , to just under the left side of my chin. It changes there, and for the last few inches it appears to just be the 'crease' in my neck.



I was extremely lucky with my scar. My surgeon was excellent - specialized in head and neck surgery. It is not noticeable unless you really get in my face. Lol. I used vitamin E (oil) and sunscreen.  He was really amazing. Very confident and maybe a little arrogant, but treated his patients like gold. Only time he faltered a bit was when I told him my concern of losing my singing voice. He said he couldn't promise there wouldn't be a change, but he would be extremely careful of my vocal chords.  Apparently he really meant that, because when the chief surgical resident who assisted him came to see me after surgery, he mentioned the surgeon said " I have to be extra careful - she's a singer."!


----------



## mrsklamc

No, I don't have a gap like that, but I agree with Christine, I don't notice it as looking 'off' in your picture. I, too, should get savvy enough to post a pic.


----------



## mrsklamc

SingingMom said:


> I was extremely lucky with my scar. My surgeon was excellent - specialized in head and neck surgery. It is not noticeable unless you really get in my face. Lol. I used vitamin E (oil) and sunscreen.  He was really amazing. Very confident and maybe a little arrogant, but treated his patients like gold. Only time he faltered a bit was when I told him my concern of losing my singing voice. He said he couldn't promise there wouldn't be a change, but he would be extremely careful of my vocal chords.  Apparently he really meant that, because when the chief surgical resident who assisted him came to see me after surgery, he mentioned the surgeon said " I have to be extra careful - she's a singer."!



Singing for me actually got better (not a singer, just in church.) I hadn't realized how much it was compressing my airway. (I was 29 and they said I had probably had it for 20 years.)


----------



## dischick4778

luvmarypoppins said:


> Well I scheduled my sono. Its going to be July 9th,
> 
> hmm Jenn, same day you are going to WDW. Where are you eating?? Of course I am disney obsessed with the food. I really think a lot of it has gone down in quality and up in price. I guess the only good thing would be if your take your little one to a character meal. Its air conditioned and then you dont have to wait out in the heat to meet those characters etc. We use to always go in August. I am sure the July heat is bad too. One word:  Pool!!!
> 
> Does anyone else feel like this??  You try to put the cancer in the back of your mind and then when you are making appts, it just puts it right back up there. Like right now I feel like a knot in my stomach. I am gonna have to have some serious prayer time later I think.  This is also right after I am teaching vbs, I think I will be exhausted and glad to lay on that table for 30 min.
> 
> Still trying to work out something for the F and W. That is not going well. Cant get a decent room or flights etc. I will wait a while longer. Hoping for an ap discount or that we can use some of dh ff miles for a hotel room.
> 
> Hope everyone is doing well.



Good luck with your sono!  I will be thinking of you and sending you positive thoughts from WDW.  We have ressies at Le Cellier, Liberty Tree, Bongos, Tutto Italia, Kat Kora's place, O'Hana, The Wave, and breakfast at Chef Mickeys.  

Tomorrow is two years since my surgery, it is a scary feeling still.  I remember that day so clearly and never want to go through that again.  Just thankful for every good Dr. visit.


----------



## luvmarypoppins

jepressley said:


> Hi Everyone,
> 
> I have been reading your posts/stories on and off over the last several months. I've been recovering from a thyroidectomy due to papillary cancer 10/31/11. It has been a long and difficult road due at least in part to the fact that I was already sick with adrenal exhaustion when they found the cancer. Once I had the thyroid out it made me so much worse b/c the adrenals and thyroid work very closely together. So, long story short, after a long haul of finding the right dr. I have made tremendous progress and my adrenals are in much better shape. But, I am just now on a normal dose of medication (100 mcg) b/c my adrenals were so bad they couldn't handle the meds and I had to get them compounded in order to titrate up very slowly.
> 
> Soo, I am really struggling with poor energy, depression, and generally feeling crummy. I am single and self-employed and just not able to go back to work --- but at a very, very slow pace (2hrs./week). I am feeling discouraged because I thought I would feel better by now but seems I am getting more tired. Just had new bloodwork done on Friday and will see my DO this week to get increased to 112mcg. (Still going slowly but not as slow as before!) My last TSH was 15 (about 2 mos. ago at 70mcg). I had free t3 and t4 tested also and can post the numbers and/or the new ones soon.
> 
> Anyway, you all seem to be a kind, caring, and knowledgeable group and I am hoping you can give me some input and encouragement. Specifically, is how I'm feeling "normal" for where I am in terms of dosage? Should all of this improve with time, more meds?
> 
> I really appreciate your time and feedback.
> 
> Thank you,
> Jill



Welcome. I dont have any experience with dosing up,just down for me. I am at 150 now and started out at 200. 

Have you ever gone to an endocrinologist? I rally wouldnt trust my own gp with my thyroid stuff. He is clueless and was the one who couldnt even figure out I had cancer to begin with especially with all the symptoms I had.

It does take a while to get on the right dose that will make you feel like your new you, so hang in there. Its a process for sure.


----------



## luvmarypoppins

mrsklamc said:


> Singing for me actually got better (not a singer, just in church.) I hadn't realized how much it was compressing my airway. (I was 29 and they said I had probably had it for 20 years.)




This is one of the things I am most sad about. Before all of this happened I was about to join the choir. Some people told me what a good voice I had. Well that is no more.


----------



## luvmarypoppins

mrsklamc said:


> No, I don't have a gap like that, but I agree with Christine, I don't notice it as looking 'off' in your picture. I, too, should get savvy enough to post a pic.



I dont know how to post a picture. It was actually Tuffcookies (cindys) picture her beau took of us when we ran into each other at the Swan.

The worst thing in my gap which you cant see in the picture is my beating vein/artery or whatever it is. It is really freaky. This is what was left after the lifesaving stuff. 

Even my ds say its creepsy, even the one ds who is going to nursing school. I dont know how to describe it. It looks like my neck is beating right under the skin. Really weird. Oh well, it is what it is. I am just thanking God he saved my life (and dh always reminds me how he pushed the bed to the or etc).


----------



## Christine

jepressley said:


> Hi Everyone,
> 
> I have been reading your posts/stories on and off over the last several months. I've been recovering from a thyroidectomy due to papillary cancer 10/31/11. It has been a long and difficult road due at least in part to the fact that I was already sick with adrenal exhaustion when they found the cancer. Once I had the thyroid out it made me so much worse b/c the adrenals and thyroid work very closely together. So, long story short, after a long haul of finding the right dr. I have made tremendous progress and my adrenals are in much better shape. But, I am just now on a normal dose of medication (100 mcg) b/c my adrenals were so bad they couldn't handle the meds and I had to get them compounded in order to titrate up very slowly.
> 
> Soo, I am really struggling with poor energy, depression, and generally feeling crummy. I am single and self-employed and just not able to go back to work --- but at a very, very slow pace (2hrs./week). I am feeling discouraged because I thought I would feel better by now but seems I am getting more tired. Just had new bloodwork done on Friday and will see my DO this week to get increased to 112mcg. (Still going slowly but not as slow as before!) My last TSH was 15 (about 2 mos. ago at 70mcg). I had free t3 and t4 tested also and can post the numbers and/or the new ones soon.
> 
> Anyway, you all seem to be a kind, caring, and knowledgeable group and I am hoping you can give me some input and encouragement. Specifically, is how I'm feeling "normal" for where I am in terms of dosage? Should all of this improve with time, more meds?
> 
> I really appreciate your time and feedback.
> 
> Thank you,
> Jill



I'm not sure I can comment on the adrenal issues.  I have heard of adrenal fatigue; however, monitoring that is not something most mainstream doctors (endocrinologists or GPs) even bother with.

As for your thyroid.  Your TSH is too high.  At 15, no wonder you are tired.  Is there a specific reason that your doctor is going so slowly with getting you to a proper TSH range?  Your surgery was roughly 9 months ago.  I would think that, at this point, your TSH should have been stabilized down to the "close to zero" mark.  As a newly diagnosed, thyroid cancer patient, this is the time for TSH suppression and you need to work on that.  I think once you get your TSH into an optimal range, only then will you *start* to feel better.  

Have you had any radioactive iodine treatments since your surgery?


----------



## SingingMom

luvmarypoppins said:


> This is one of the things I am most sad about. Before all of this happened I was about to join the choir. Some people told me what a good voice I had. Well that is no more.



It was a very strange time for me - my husband's office was closing, he had to find a new job, we hadn't had children yet (one miscarriage) and now I had a cancer diagnosis.... And the only thing I was worrying about was if I'd be able to sing again!   

But, as I am a leader of song in church, I prayed that He would spare those vocal chords so that I could continue to praise Him in song. And, my prayers were answered     Good luck to all of you.


----------



## jepressley

Thank you Luv Mary Poppins & Christine.

I have been to 2 endocrinologists neither of which were helpful at all. First of all, they don't believe in adrenal exhaustion which is pretty ignorant. In any case, I've been thru about 12 practitioners to get help and finally settled on a ND (naturopath) and DO. They are fine working in conjunction in order to help me. And, they are fine with my health and feeling good being the priority above all else. Oh, and they are very knowledge about thyroid stuff. 

Actually, I wasn't needing any input on the adrenal stuff, have that covered. Just mentioned it to give big picture background and why mine hasn't just been a more straightforward case of thyroid cancer. The adrenal problems are the reason I have had to go so slow building up my thyroid meds. If someone with a thyroid had adrenal problems they would always be treated first then deal with the thyroid -- but, of course, that's not an option without a thyroid. I had terrible hypoglycemia b/c of adrenal problems and when I started on thyroid meds it made me much worse b/c my adrenals couldn't handle the increase in metabolic energy. (Btw, all inserts of thyroid meds say they are contraindicated in people with adrenal insufficiency.) So, we had to see saw back and forth to support my adrenals, increase thyroid meds, support adrenals, increase thyroid, and so forth. 

Sooo, sorry for the longwindedness -- it's been a nightmare, I was just hoping for thoughts about how I'm feeling and what to expect as I increase my meds. My TSH was at 15 a few months ago when I was at 70mcg but now I'm at 100mcg and have been for 31days. Just had new bloodwork and should have results by Wed. Guessing the TSH is better but still have a ways to go. Luckily, I can go somewhat faster with my med increases now but my doctors (and I) do want to go slow rather than me ended up hyper which would be hard on my adrenals. Hope that makes for a clearer picture.

Mainly, I'm just wondering why I'm not feeling better. Seemingly, I should be getting closer to an optimal dose if nothing else... wouldn't that mean feeling better? Instead I seem to be feeling even more fatigued.

Oh, and I did not have RAI and do not plan to. I have read about the side effects and that it is overused along with causing increased risk of secondary cancers. My cancer was stage 1 papillary with no spreading or lymph node involvement. I wish I would have just left it alone. I think that's the best course of action with papillary and have read some things recently supporting that view -- that the diagnosis & subsequent removal of the thyroid does nothing more than make people hypothyroid (and all that entails) and dependent on thyroid meds when they could have just taken a watchful waiting approach. 

I certainly mean no judgment for anyone else's approach/perspective, that just my opinion given the research I've done. Everyone has to do what feels best to them. For me, I wish I'd just let it be. 

Thanks again for your thoughts,
Jill


----------



## mrsklamc

Jill,

You must be in absolute misery! Unfortunately closer to right doesn't necessarily mean feeling better. There's a pretty small range w/ thyroid stuff to not be straight up miserable.


----------



## luvmarypoppins

Jill

I understand some of the stuff you are staying about the adrenals, especially taking care of them before the thyroid.

I know they thought I had an adrenal tumor at first and cancelled my thy ca surgery to address it. Had to have lots of testing for that. They said the adrenal tumor can hide and not even show up on tests. So I had to have ct tests, urine stuff and some $800 blood pressure med for a month.

They said if the tumor was there and I had anesthesia then I would have a stroke and die on the operating table during the thy ca surgery.

I know you have to choose what you feel is best for you treatment wise.

Yes I was told I have a higher chance of getting a secondary cancer. Most likely leukemia I think. 

Have you been on the thyca.org website. Someone there might have more insight into the adrenal stuff.

I know there is a poster from the breast cancer boards, Really she is a young girl who had a pituitary tumor. She finally found someone I think in Utah who operated on her because she wanted both her adrenals removed to address all the other problems she was having. She is the most knowledgeable about that, but I dont think she posts too much anymore as her dad has ca too. I know she said she has to keep gatorade with her at all times and tires very easily and cant get too overheated.

Wishing you all the best. Hang in there.


----------



## becky_AK

Good morning,
I'd like to introduce myself and subscribe to this thread.  I am 31 and just found out I have hypothyroid.  My dr. prescribed medication and I am hoping this will help with the extreme fatigue I have had recently.  I honestly thought a big part of my fatigue was due to working full-time, having a 4 month old & 5 yo, and just being very busy in general.  This is all new to me but I am doing research on diet and ways to help with thyroid problems.  I am glad to see that I am not alone.

-Becky


----------



## jepressley

Thanks for your input Luv Mary Poppins. You have had a really hard road yourself (to say the least!) and I wish all the best for you too.

And, thank you too, Mrsklamc -- didn't you have a really hard time getting your meds regulated? Or, am I mixing you up with someone? I have my new bloodwork results from a few days ago. My TSH is now 5.4. My dr. is increasing me from 100 to 112mcg. I actually do feel a little better today than I have in a while. So, from your perspective, how I'm feeling is related to the TSH being too high. And, the feeling better then worse again is the norm on the way to med optimization?

Anyone else have thoughts on getting meds regulated? Especially if you had a hard time and are doing better now!! It really helps to get input from people who have reached the other side, so to speak.

Christine, you said it took you "years" to feel "right"... could you elaborate. Eek, that's a scary thought.

Thanks again, everyone!

Jill


----------



## Christine

jepressley said:


> Christine, you said it took you "years" to feel "right"... could you elaborate. Eek, that's a scary thought.
> 
> Thanks again, everyone!
> 
> Jill



Well, when this all happened, I was 31 years old with a 4 year old and a 8 month old baby.  I had to have two surgeries, and I spent from 1995 to 1997 have RAI treatments to get rid of my VERY small papillary cancer.  The RAI treatments and the subsequent up and down of being on and off meds (no thyrogen treatment back then) really took my body through the a war!  Then in 1998, probably from being very hypo and having a suppressed immune system, I contracted giardia. I lost 25 lbs in 2 months and had to quit working because no doctor could figure out what was wrong.  Once i was treated, it took a long time for my stomach and intestines to repair.  It was probably the early 2000s, after one or two clean scans and no health issues that I started to feel myself.  The only good part is by that time, we knew what dose was *my* dose so I ended up getting my meds regulated pretty quickly after the initial diagnosis back in 1995.

Since you haven't had RAI and all the resulting ups and downs, I don't think you'll have this problem.  You may not feel yourself until your TSH has been at least a 2.0 for a good 6 months.  It doesn't happen the day you hit the magic number.  The body has to repair itself from the damage of being hypothyroid.


----------



## jepressley

Thanks, Christine.


----------



## Mariep26

Hi
I haven't gotten all the way through the thread but I intend to tonight. I was very happy to see a thread dedicated to thyroid!

Thyroid issues run all over my family. My mom and my grandmother on both sides have/had thyroid issues (hypo) so I always knew thyroid issues were in my future. I have been monitored for thyroid issues since my teens and nothing significant arose until my second pregnancy.  My OB felt that my thyroid was enlarged and my blood work was off so she sent me back to my endo for monitoring. My son was under 1 year old at this point so they did not know if I had pregnancy induced hyperthyroid or post partum hyper (since that often kicks in 6 months post partum) or maybe Graves. At 32 weeks I started to have preterm labor and was on bed rest for 5 weeks. After coming off bed rest my daughter, Presley, was born at 38 weeks 5 days.
After having my daughter I was monitored for months and eventually was diagnosed officially with Graves disease. I have been on methimizole since my diagnosis and am currently on the lowest dosage I have ever been on (5mg 1x per day). That is the good news. The bad news is that we decided late last year that we wanted to grow our family. I got pregnant in October and had a miscarriage at 7weeks 1 day. We waited a bit and got pregnant again in April but that pregnancy also ended at 7 weeks 1 day. 
Currently we are waiting to try again until September and my endo plans to proactively switch me to PTU instead of switching me once I get pregnant. 
Thanks for letting me share!!


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## cm8

luvmarypoppins said:


> This is one of the things I am most sad about. Before all of this happened I was about to join the choir. Some people told me what a good voice I had. Well that is no more.


That happened to me as well


SingingMom said:


> It was a very strange time for me - my husband's office was closing, he had to find a new job, we hadn't had children yet (one miscarriage) and now I had a cancer diagnosis.... And the only thing I was worrying about was if I'd be able to sing again!
> 
> But, as I am a leader of song in church, *I prayed that He would spare those vocal chords so that I could continue to praise Him in song. And, my prayers were answered*     Good luck to all of you.



, Praise God!


----------



## SingingMom

cm8 said:
			
		

> That happened to me as well
> 
> , Praise God!



Thank you!  My prayer is that all of you have similar outcomes. The journey of thyroid disease is very long and hard.  It can be discouraging. Try to keep positive. ((hugs))


----------



## luvmarypoppins

Becky - welcome. Hope the meds will help you.

Marie - wishing you all the best

SingingMom - I am glad God let you keep the wonderful gift He has give you with your voice. 

Well I am going to get my blood test on Sat. Then the sono on Mon.

Made all my adrs for the next trip. The only one I think I might get rid of is Teppan Edo, been reading some bad reviews on the boards. 

Blessings to you all


----------



## Mariep26

luvmarypoppins said:
			
		

> Becky - welcome. Hope the meds will help you.
> 
> Marie - wishing you all the best
> 
> SingingMom - I am glad God let you keep the wonderful gift He has give you with your voice.
> 
> Well I am going to get my blood test on Sat. Then the sono on Mon.
> 
> Made all my adrs for the next trip. The only one I think I might get rid of is Teppan Edo, been reading some bad reviews on the boards.
> 
> Blessings to you all



Thanks for the well wishes!! On the subject of Teppan Edo -- I have it booked for the CP in December. I heard that the complaints being too small of portion and not being "Americanized" Japanese (i.e. No fried rice). I am also on the fence but need to act fast if i want a CP ADR!


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## dischick4778

luvmarypoppins said:


> Well I am going to get my blood test on Sat. Then the sono on Mon.
> 
> Made all my adrs for the next trip. The only one I think I might get rid of is Teppan Edo, been reading some bad reviews on the boards.
> 
> Blessings to you all



Good luck tomorrow and Monday!  We are all packed and off to AKV Monday morning.  I will be thinking of you!


----------



## luvmarypoppins

Went for my sono yesterday. I had my usual girl and surprisingly she was so pleasant and nice this time.

She said that everything looks good after she took my pictures to the radiologist. 

So since I didnt need any more views I am assuming all is well. But of course we have to look at the blood test numbers etc.

I am so exhausted teaching bible school. We have 15 kids and my helper is such a super lady. She does everything to help me that I cant do physically. She is a blessing for sure. I am getting to know her more. Amazing how you see someone briefly on a sunday and dont get to know them too much etc.

Endo on Monday.


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## Christine

luvmarypoppins said:


> Went for my sono yesterday. I had my usual girl and surprisingly she was so pleasant and nice this time.
> 
> She said that everything looks good after she took my pictures to the radiologist.
> 
> So since I didnt need any more views I am assuming all is well. But of course we have to look at the blood test numbers etc.
> 
> I am so exhausted teaching bible school. We have 15 kids and my helper is such a super lady. She does everything to help me that I cant do physically. She is a blessing for sure. I am getting to know her more. Amazing how you see someone briefly on a sunday and dont get to know them too much etc.
> 
> Endo on Monday.



Sounds like a good visit!!!

Hey, when are you going to be in Disney?  I'm toying with the idea of going with my DD at the end of July.  She's already going but I'm on the fence.  Probably won't go but it'd be fun to meet up for a short time if we are there at the same time.


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## Granfan

Christine said:


> You've got it!



The second surgery went much better than the first. It is now a year later and she was told she will get radioactive iodine treatment in August. We had asked about it shortly after the surgery and they said it wouldn't so any good then. I know there are many types and variations of cancer so I guess we'll go along even if we don't understand why. I've thought of you all and your emotional support of us even when you're going through trouble yourselves. I really appreciate you all so much even though I don't come to these boards much anymore.


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## Christine

Granfan said:


> The second surgery went much better than the first. It is now a year later and she was told she will get radioactive iodine treatment in August. We had asked about it shortly after the surgery and they said it wouldn't so any good then. I know there are many types and variations of cancer so I guess we'll go along even if we don't understand why. I've thought of you all and your emotional support of us even when you're going through trouble yourselves. I really appreciate you all so much even though I don't come to these boards much anymore.



Can you let me know what part you all are not understanding?  Maybe we can all clear it up a little?


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## mrsklamc

GranFan- it sounds like maybe you don't understand why she couldn't have radioactive iodine right after surgery? Her body will need to be clear of the thyroid hormone her body was producing before the RAI. Also, they told me that it might cause my incision to rupture if it wasn't fully healed, but I don't really trust the doc who said that, so...


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## Granfan

I thought that if any cancer cells were left after surgery it would be better to go ahead and treat them before they could multiply or spread. I didn't know about being clear of thyroid hormones first. Now, she is afraid of side effects of the RAI.


----------



## mrsklamc

Well, it is best to do it shortly after the surgery, but a few weeks will help, not hurt. They want any remaining thyroid tissue to be 'hungry' for the RAI. 

Do you know what dose of RAI she will be getting? My first one was not so bad, but the second one was a doozy. The effects are cumulative, so I think I would have been better off all around if they had done my first dose at a higher level, but hindsight is 20/20. It's hard to know, they want it to be the lowest effective dose....Anyway, tell her not to be scared of the RAI, it will be ok. Do you know if she is going to be getting a drug called thyrogen? It allows you to stay on your synthroid while you do RAI, and being off the synthroid was far, far, FAR worse that the RAI was.


----------



## SingingMom

mrsklamc said:


> Well, it is best to do it shortly after the surgery, but a few weeks will help, not hurt. They want any remaining thyroid tissue to be 'hungry' for the RAI.
> 
> Do you know what dose of RAI she will be getting? My first one was not so bad, but the second one was a doozy. The effects are cumulative, so I think I would have been better off all around if they had done my first dose at a higher level, but hindsight is 20/20. It's hard to know, they want it to be the lowest effective dose....Anyway, tell her not to be scared of the RAI, it will be ok. Do you know if she is going to be getting a drug called thyrogen? It allows you to stay on your synthroid while you do RAI, and being off the synthroid was far, far, FAR worse that the RAI was.



Back in my day of thyroid cancer surgery (20 years ago) they didn't have the thyrogen option and being off the synthroid was worse than the actual surgery.  I opted not to have the RAI because scan came back just over 2% and I literally could not put myself through a week of isolation at the state I was in without the synthroid, plus I had questions on the effects it might have on ovaries etc (having not had children yet).
      Today things are so different and I probably would have had the RAI treatment with no issues at all.


----------



## Christine

Granfan said:


> I thought that if any cancer cells were left after surgery it would be better to go ahead and treat them before they could multiply or spread. I didn't know about being clear of thyroid hormones first. Now, she is afraid of side effects of the RAI.



Granfan,

Most people don't have the treatment immediately after surgery.  I had my surgery in August and didn't have RAI to right before Thanksgiving.  My surgeon wanted me to wait long enough to recover from the surgery, get my bearings, and have my neck heal a bit.  I was much younger the first time when I went off my medication for the scan (no Thyrogen back then) and I worked right up until the treatment, went to the hospital on my lunch hour, had the RAI dose (it was a "walking" dose") and drove myself home.  I did start to feel kind of bad after that but nothing more than a mild flu.  The larger doses (which I had later) did cause me more issues, heck, probably more issues than most.  But, tell her not to be too afraid.  The "worst" of it is going to feel like she's got a good case of the flu without the fever.

If she's concerned about long-term effects, there is a report increase of other cancers way down the road but that is for successive doses that are large (yep, like I had) and the causation is still sort of "loose" there.  I've not personally heard of/met anyone with thyroid cancer that had that happen.


----------



## mrsklamc

I also read once that they aren't sure if cancer patients get more cancers, or if we are just monitored much more closely than average, so our other small tumors tend to get found.


----------



## Granfan

Thanks for all the info. I will pass it along to my daughter. I don't know if thyrogen will be used or not. I hope she will get more information on how they intend to treat before she decides to let them do it or not. She is a second grade teacher so she may have to be out for a few days. Also her last surgery was March 2011 and that seems like a long to wait to me.


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## luvmarypoppins

Granfan - wishing your dd all the best. I am one for thyrogen instead of going hypo. I guess you dd will have to ask her care team what method they will be using. I guess if her ins. covers thyrogen and they can get it for her it would cut down on alot of tiredeness, withdrawl etc.  Do you live near her that you could help her out?

Update on me:  went  to the endo today. She said my thyroglobulin is undetectable, my tsh is .63, is that .63 or .063??

Anywho, she said that the tsh was my lowest number yet, so she is really happy and she is keeping my synthroid at 150 and probably will not lower it any more. I told her how tired I was. etc.  No comment from her other than that is always a problem for you etc. She did not like that I gained 11 lbs. or maybe 8, I cant remember. I dont know, I think its because I dont exercise because of all my back pain and hip trouble etc. I cant remember what it was at the onc. in May but I cant believe I gained that much weight in such a short time etc. Very strange. 

So next month she wants me to get a bone scan to see if the reclast worked. If it did, then I have to have another reclast infusion and if the bone scan is not good then she might try a different med to slow down the osteoporosis etc.

So other than the infusion in Nov. and the bone scan next month, I am good to go until Jan. so far.


----------



## mrsklamc

Has your potassium been checked at all? Mine was low, and it can be caused by high doses of thyroid hormone. Taking a supplement for that has really helped with tiredness, specifically tiredness in my muscles when I move.


----------



## Christine

luvmarypoppins said:


> Update on me:  went  to the endo today. She said my thyroglobulin is undetectable, my tsh is .63, is that .63 or .063??
> 
> Anywho, she said that the tsh was my lowest number yet, so she is really happy and she is keeping my synthroid at 150 and probably will not lower it any more. I told her how tired I was. etc.  No comment from her other than that is always a problem for you etc. She did not like that I gained 11 lbs. or maybe 8, I cant remember. I dont know, I think its because I dont exercise because of all my back pain and hip trouble etc. I cant remember what it was at the onc. in May but I cant believe I gained that much weight in such a short time etc. Very strange.



It's .63.  You can have a TSH of .063 but it would say that.  A .63 is a good number to have.  Mine is around .3 to .5 on any given test.

LMP--I can tell you--at age 48, I am to the point that I do feel pretty awful when I don't exercise.  I have NEVER been an exerciser or athletic or even interested in doing much in my life.  I was always very naturally thin and felt good so I never concerned myself with it.  I have felt that starting at around age 43, it is the first time in my life that I have noticed myself going "downhill".  Each year it gets worse.  I have had to REALLY force myself to exercise.  As much as I hate to admit it, it works.  Now, it doesn't work right away but after about 4 weeks of gentle walking and building up to it, I notice that I have more spring in my step.  Now, of course, everything hurts more, but it's kind of a good hurt.

I also gain weight very easily now.  I went back on to sparkpeople.com and started logging everything I ate.  I was shocked to see that I was eating around 2500 calories a day.  I didn't *think* was eating that much but it's easy to do.  So I managed to really tweak my food intake since I was now aware of it and that really help me too.  I won't say I *dieted* but I definitely cut down some things.

You have to be really motivated to start both of those things so if you get to the point that you are feeling so poorly, you might want to give that a try.


----------



## luvmarypoppins

mrsklamc said:


> Has your potassium been checked at all? Mine was low, and it can be caused by high doses of thyroid hormone. Taking a supplement for that has really helped with tiredness, specifically tiredness in my muscles when I move.



I agree about the potassium stuff. I always have problems with that and leg cramps at times. 

She did a basic metabolic panel, so I dont know if that is included in there for testing etc.


----------



## luvmarypoppins

Well the endo knows I really cant exercise due to all my back surgeries and I am sure my hip is barely holding on right now with all the pain I am having.

I think the only thing I could possibly attempt is a treadmill at home.  I dont even want to walk in the street for fear of falling etc. I dont even have a good balance anyway.

Oh she also said I have to have another bone scan (dexa) in August. She said hopefully my number will be up and then I will get another reclast infusion in Nov. If the number is not up, then she will have to switch me to some other med or infusion to keep the osteoporosis from getting any worse too.

I really hope the number is up because after the horrible reaction I had to that first infusion I cant even imagine what another med would be like. She did say if I have this reclast infusion again I should not get the horrible reaction like I got before, yeah right. We will see about that for sure.


----------



## Christine

luvmarypoppins said:


> Well the endo knows I really cant exercise due to all my back surgeries and I am sure my hip is barely holding on right now with all the pain I am having.
> 
> I think the only thing I could possibly attempt is a treadmill at home.  I dont even want to walk in the street for fear of falling etc. I dont even have a good balance anyway.



Yeah, that's a problem.  I do most of my exercising in my basement on my treadmill.  I am very sensitive to the heat so it works.  But I occassionally try to get out and walk the poor old dog when the temps stay in the 80s.  

So in early June I was walking my dog and I was about 1/2 mile from my house.  Thankfully, I was with a friend.  I was so busy looking at some barking Rottweiler that I step on this thick branch.  My ankle rolled and it was slow motion after that.  I spent a few seconds trying to catch myself from falling.  I busted up both hands pretty badly as well as scraped my ankle.  I thank god that I was wearing pants versus shorts or my leg would have been a mess.  I had a split in my right hand and I should have gotten a stitch in it but I refuse to go to doctors!! My left palm was scraped and my left hip had a bruise that covered the whole side of my butt.  I was fairly traumatized.  Walking can be hazardous to your health!!!

Do you have any problems getting around Disney or do you have to use a ECV or anything?


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## luvmarypoppins

When I am in Disney I rent a wheelchair. I use it like a walker and then when I am tired I will sit in it and dh will push me. 

I do sit in it for the parades etc. There is no way I could stand for that long of a time etc.

I usually walk to an attraction then sit in it so I can sit in the handicapped section, like shows, since I would probably hold everyone up with how slow I walk etc. 

When we eat I just leave it outside the restaurants.

I dont think I would rent an ecv. Those things are difficult to manage and a hassle to load into the buses etc.


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## mrsklamc

Is there anywhere you could swim or do like a low impact water aerobics?


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## luvmarypoppins

Micayla - Thats an option but its a hassle to drive to dh work (they have a pool there) and its only for a short time its open and there are kids allowed too, but I might check it out sometime. Its called family swim nights I think. 

Ds told me I could come to the pool where he lifeguards but its only 4 1/2 feett deep so I doubt it would help.

Oh I also found out why they kept cncelling my july endo visit months ago , like 3 times and then they finally gave me the early July date. My endo is going to Greece! So funny because she asked us what our summer plans ere and I said dh is going to Greec on business and then she said she was too with her 3 kids. (She is Greek). She says she goes every year. This lady is so skinny. I did notice that she was yawning during my visit. I think I was the last patient of the day (note to self: dont be the last patient of the day again). 

Jenn - if you are following along, check in! We want to hear about your Disney trip! Of course I want to hear your Tutto experience.


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## Christine

I've got my last-minute trip finalized.  I'm leaving at 3AM on Friday morning.  God, I can't believe I'm going to drive.

Anyway, I am going to eat at the diner I love that is in Celebration one night.

I have ADRs for Sanaa, The Wave, and Artist Point.  I also have one at the Captain's Grille for breakfast one day.   I may add one more in while I'm there depending on how things go. Wouldn't mind trying the pizza at Via Napoli.


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## luvmarypoppins

Christine, your trip sounds great. Wow, you are brave to drive. I know there is no way I could take it physically.

Like your dining choices. Cant wait to hear all about it. Have a great trip!


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## Christine

luvmarypoppins said:


> Christine, your trip sounds great. Wow, you are brave to drive. I know there is no way I could take it physically.
> 
> Like your dining choices. Cant wait to hear all about it. Have a great trip!



I'm really not happy about driving.  It's about 13 hours.  In my Elantra.  Oh, why did I not buy the Sonata????

The last time I drove to Florida was when I was about 24 years old and I went straight through to Stuart, Florida.  It was a long haul but I was YOUNG.  I have a hard time driving to my DD's university in West Virginia (3 hour trip each way) without feeling crippled.


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## JKMJ441724

I'm waiting on my test results.  I'm 39 and haven't had a period all year.  He said it could be anything from stress to thyroid.  Waiting is getting to me.


----------



## Kristie13

Just wanted to join in- 

I was diagnosed with thyroid cancer two years ago, although this was during surgery to remove a growth and have been cancer free ever since. I developed hypothyroid after the surgery. Then, I gained 60 pounds in 4 months. This was partly due to the disease, and partly due to me turning to food to cope. Now I am trying to get rid of the weight! 

I also have been diagnosed with hyperparathyroid disease. 


Just wanted to say hello to all my fellow problem-thyroided friends!


----------



## Christine

Kristie13 said:


> Just wanted to join in-
> 
> I was diagnosed with thyroid cancer two years ago, although this was during surgery to remove a growth and have been cancer free ever since. I developed hypothyroid after the surgery. Then, I gained 60 pounds in 4 months. This was partly due to the disease, and partly due to me turning to food to cope. Now I am trying to get rid of the weight!
> 
> I also have been diagnosed with hyperparathyroid disease.
> 
> 
> Just wanted to say hello to all my fellow problem-thyroided friends!



Welcome!!

So were you having parathyroid surgery when the thyroid cancer was discovered?  My last endocrinologist, who is now retired, found his thyroid cancer that way.  He had a benign growth on his parathyroid that was causing hyperparathyroidism.  While the surgeon was in there removing it, they noted that he had a nodule on his thyroid gland, so that took that too.  It ended up being papillary thyroid cancer.

Did you not know that the thyroid surgery would cause you to have hypothyroidism?  Maybe it was the way you worded your post but it almost sounded like you weren't expecting that.  And, if so, why did they let you go so long without thyroid hormone replacement.  To gain 60 lbs sounds as if it went on a good amount of time.  I know that I gained about 10-13 lbs when I was off my meds for 6 weeks.


----------



## Kristie13

Christine said:


> Welcome!!
> 
> So were you having parathyroid surgery when the thyroid cancer was discovered?  My last endocrinologist, who is now retired, found his thyroid cancer that way.  He had a benign growth on his parathyroid that was causing hyperparathyroidism.  While the surgeon was in there removing it, they noted that he had a nodule on his thyroid gland, so that took that too.  It ended up being papillary thyroid cancer.
> 
> Did you not know that the thyroid surgery would cause you to have hypothyroidism?  Maybe it was the way you worded your post but it almost sounded like you weren't expecting that.  And, if so, why did they let you go so long without thyroid hormone replacement.  To gain 60 lbs sounds as if it went on a good amount of time.  I know that I gained about 10-13 lbs when I was off my meds for 6 weeks.



Yes- I had the surgery to remove all 4 parathyroid glands, and have one redeposited into my chest. While they were in there, they took out half of my thyroid which had the growth. I had a biopsy done before surgery and it came back inconclusive, so they only took half out, sent it to the lab to be tested, it came back negative for cancer, so they left the other half and sewed me back up. Upon further "probing" into the lump, they ended up finding cancer afterall. Very frustrating since the idea was that if it was cancerous, they were going to remove the whole thing to avoid having surgery again. My endocrinologist had said hypothyroid would be a possibility, but because they were only taking half it wasn't for sure. She has been testing me out on various medications and doses for the hypothyroid, and the first 3 or 4 that I tried were not sufficient, and I didn't have the right medication until about 8 months after the surgery.


----------



## Christine

Kristie13 said:


> Yes- I had the surgery to remove all 4 parathyroid glands, and have one redeposited into my chest. While they were in there, they took out half of my thyroid which had the growth. I had a biopsy done before surgery and it came back inconclusive, so they only took half out, sent it to the lab to be tested, it came back negative for cancer, so they left the other half and sewed me back up. Upon further "probing" into the lump, they ended up finding cancer afterall. Very frustrating since the idea was that if it was cancerous, they were going to remove the whole thing to avoid having surgery again. My endocrinologist had said hypothyroid would be a possibility, but because they were only taking half it wasn't for sure. She has been testing me out on various medications and doses for the hypothyroid, and the first 3 or 4 that I tried were not sufficient, and I didn't have the right medication until about 8 months after the surgery.



I see.  You had an experience similar to mine.  I had a single nodule on my thyroid (and at the time could not be biopsied).  My surgeon said that thyroid cancer was very rare so he was only going to remove half of the thyroid and also the isthmus.  He told me that my remaining thyroid would takeover and I would not need treatment with thyroid hormone.  So, while I was on the table, they did the partial thyroidectomy and they did an on-the-spot "frozen" section biopsy which came back benign.  They sewed me up and sent me home with directions to report back to the surgeon in a week. 

When I went for the follow-up visit, the full pathology was back and I had papillary thyroid cancer.  This required a second surgery and follow up RAI treatment.  I was put on thyroid medication after this surgery and I never really had a problem getting regulated.  My first endo did not keep me suppressed enough so for the first 2 years, I had a TSH closer to 4.0 (I felt fine).  When I got a new endo, he found that totally unacceptable and raised my dosage.  I've been pretty stable ever since (about 17 years now).  

Hopefully you can get your medication stabilized.  It makes all the difference.


----------



## luvmarypoppins

JKMJ441724 said:


> I'm waiting on my test results.  I'm 39 and haven't had a period all year.  He said it could be anything from stress to thyroid.  Waiting is getting to me.



How did your tests turn out? Hope all is well.


----------



## luvmarypoppins

Kristie - welcome. Glad to hear you are doing well after all you went through. Hope you get the right med dose. That helps so much and makes you feel decent too.

Christine - how was your trip??? I did see your post about how cold it was at the tea. I did the tea with one of the breast cancer gals the other year. It was such a nice time.

Well I need to make a bone scan appt. and the dentist too.

My neck has really been bothering me on and off. Maybe scar tissue? The 2nd surgeon did tell dh I would have problems all my life because of what he had to do to save my life. Oh well, its def. not fun for sure. One night I felt a "pop". Scared me for sure!

So how is everyone else doing???


----------



## Christine

My trip was very nice.  It all went well, I didn't get too tired like a normally do, and had some good meals.  I hate to even say this but I came back and found I had lost 5lbs.  Now, most people would be jumping for joy, but the hypochondriac in me freaked out.  

I have tried to rationalize it to all the walking I did for 5 days and this was probably the first trip that I did not overeat.  I also only had one dessert the whole time.  Well, two if you count the scones and the little bites of pastry after tea.

The 13 hour drive down wasn't as horrific as I thought but I don't think I'll do it again.  I will plan better and just get the flights.  

Our offsite vacation home was nice too.  Five bedrooms, four baths.  Everyone just about had their own bathroom.

As for the weird neck stuff--I've had weird pops too.  It's like sometimes my throat gets "caught" in a weird place and locks up.  It actually kind of hurts.  Then in pops back and feels normal.  I don't know what that's from.


----------



## JKMJ441724

luvmarypoppins said:


> How did your tests turn out? Hope all is well.



Still don't know anything!!!!

They called and said my "levels were elevated" and wanted some more tests.  Took blood a week ago today with no OFFICIAL answer.

Thanks for checking on me.


----------



## luvmarypoppins

My symptoms are really weird. Like a pulling sensation on the L side of the neck. Sometimes my L ear feels like it is clogged and it feels like I cant swallow on the L side. Like the eustachian tube? Not totally trouble swallowing etc.

The pop was so scary because it was on the L side and I was thinking, I hope that the vein is not popping and bursting etc. I know, crazy me, but with all I went through I am always a little on edge about this kind of stuff etc.

I really dont want to go back to the surgeon. What will he do?? A ct scan?? Probably even if he did and saw how bad it was on the inside he would say he doesnt want to do anything probably for fear he would ruin the only stuff that is hanging on and keeping me still alive etc.

Oh the joys of thy ca!


----------



## luvmarypoppins

This thread is too quiet, is that a good sign?

JKM - any news yet?

So everyone ask me what I have been doing for over the last 4 hours this morning, starting at 7 am, why yes of course...trying to make a reservation for the Be Our Guest rest. and it turned out to be..is this the right word my kids would use?? Epic Fail!!

After dialing over 4 hours, finally go through and then waitied for a cm for abut 40 minutes give r take. Give her 4 days or maybe 5 days and zip, zada nothing for 2 people Nov. 26-Dec lst. I left out one day for the candlelight package. So I am so sad and utterly disappointed. The cm said to call back tomm. as people are double booking. I didnt say anything. I jst hung up. I was too sad. Guess I shouldnt have had my heart set on this. Oh well, at least we have LTT and Plaza for dinner. One is a MVMCP night, still dont know if we are doing that yet.  So I guess we could check out the counter service. Heard it will be like 1 hour long lines

In the midst of calling the regular phone left a message that my reg. gp (you all know I cant stand him) office called and said I am due for blood testing??? hmm, havent been there in a year. I also just had a basic met. panel from the endo. I will tell them that and I do want the B12 tested and I know the endo didnt do that. I just dont feel like dealing with this kooky dr. They said they would mail me a script so that would be good not to waste a $20 copay on his nothingness etc.

My dishwasher died. We are getting a new one today. Not what I wanted but dh said what he picked out is better, oh well, dh is off to Greece on Friday, till sep. 4th I thinkthen he comes back for about 2 weeks and he is off to the west coast again. I think I will need a food and wine vacation too for sure.

Guess I will get the bone scan sometime. 

Hope everyone is well. Check in when you can.


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## mrsklamc

I'm not always getting emails when someone posts...I'm feeling ok but have lost about 10 lbs so it will be interesting to see what my levels are. 

LMP, bummed you can't get into Be Our Guest!


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## dischick4778

LMP that stinks about Be Our Guest, hoping something opens up for you!

I'm off to the surgeon tomorrow just so he can check my scar some more.  At this point I'm done with perfecting it and hope he is too.  I'm not interested in any more needles.  

We've had a tough time ttc which has me pretty bummed.  My first son was before thyroid cancer.  And although the doctors all tell me my thyroid issues should not prevent me from having kids, it has been more than six months and nothing.  Last time it worked on the first try.  Guess I was spoiled.  

We are also in the process of buying a house, which is terribly stressful.  Too much change all at once is not easy for someone on a high dose of synthroid.  

Hoping everyone is doing well!


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## dischick4778

Just sharing - http://thyroid.about.com/b/2012/08/20/huffington-post-writer-says-thyroid-cancer-sign-me-up.htm

I seriously don't know what some people are thinking.


----------



## JKMJ441724

luvmarypoppins said:


> JKM - any news yet?
> 
> 
> Hope everyone is well. Check in when you can.




Doc put me on a low dose of synthroid (?).  Still no period, so maybe my throid isn't the problem for that.  Go back on 9/14 for more tests to see if I may be in pre-mature ovarian failure. 

Too bad about the reservation.


----------



## mrsklamc

JKMJ441724 said:


> Doc put me on a low dose of synthroid (?).  Still no period, so maybe my throid isn't the problem for that.  Go back on 9/14 for more tests to see if I may be in pre-mature ovarian failure.
> 
> Too bad about the reservation.



How long have you been on it? It takes about 6 weeks to go into full effect; which makes adjusting your dose just joyful, let me tell ya.


----------



## JKMJ441724

mrsklamc said:


> How long have you been on it? It takes about 6 weeks to go into full effect; which makes adjusting your dose just joyful, let me tell ya.



today makes my 15th dose.


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## KAMLEM

JKMJ441724 said:


> Doc put me on a low dose of synthroid (?). Still no period, so maybe my throid isn't the problem for that. Go back on 9/14 for more tests to see if I may be in pre-mature ovarian failure.


I didn't have my period for 5 years. After having my thyroid removed and a few months of getting my medication at the right level I got it again. Ever since it has been VERY regular, more regular than it was my entire life!


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## JKMJ441724

KAMLEM said:


> I didn't have my period for 5 years. After having my thyroid removed and a few months of getting my medication at the right level I got it again. Ever since it has been VERY regular, more regular than it was my entire life!



Holy moly!  That's crazy.  But very good to hear.  Makes me feel better.  Thanks for sharing.


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## mrsklamc

LMP- any chance of calling back and getting a ressie?


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## luvmarypoppins

mrsklamc said:


> LMP- any chance of calling back and getting a ressie?



I could but from what I am reading my chances will be slim to next to none. My week has a lot of MVMCP in them and they will only do dinner reservations from 4-5:30 on the party days.  One day I dont want to change since its our candlellight and I waited hours to get that too. So I think I have 1 or 2 days left to try. My Plan B is to call the dining line direct to see if people cancel those within the 48-72 hour time frame for the credit card hold. Those 2 days encompass one before we leave and one when we are there. I might also see about a table for three and just suck up the $10 no show credit card fee for the 3rd person too. Oh, the things we do to eat at disney Also I dont know if I want to brave the counter service lines. We shall see. 

So far for the trip we have adrs for hollywood brown derby, cape may dinner buffet (only doing that for dh for the crab legs. That place has gone down hill food wise for sure), Via Napoli for the CP Package, Liberty Tree and the Plaza for dinner (Good bye Be Our Guest, of course good planning me made those adrs months ago), GFC (gotta seee the christmas tree), Teppan Edo (Probably going to cancel that), Chefs de France, I forgot what else. 

Got the script from the gp. He has B12 level, folate level and 2 others things that I think the endo did. Oh well. I really want the B12 done. I dont know why the endo doesnt do it?? (I did not call or ask the gp to do this. They just said its close to your one year check up date so do it etc). Yeah I didnt even make an appt. for that. I said, oh one of my sons have to bring me so I will call you back. I will say anything to get out of seeing that guy

I am constantly feeling tired and the endo just says, oh you are always like that. So apparently if you feel like crap and your numbers are all good on paper, then my endo apparently doesnt give a crap about how you feel!!

Anyone elses endos have that frame of mind and thinking?? 

I think my endos is -  this is the number I want you at and that is it, end of story etc. I am thinking maybe because mine is the aggresive variant she has to do that number and there isint much lee way etc.


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## mrsklamc

dischick4778 said:


> Just sharing - http://thyroid.about.com/b/2012/08/20/huffington-post-writer-says-thyroid-cancer-sign-me-up.htm
> 
> I seriously don't know what some people are thinking.



I missed this the first time. I am not typically a violent person but I would really like to find this woman and slap her.


----------



## luvmarypoppins

Micayla - 

They also posted this on thyca and I see wdwdancer also had a thyca thread about it too and I saw one more over there. I lurk there but dont post, maybe I should. They said she needs to be educated on this etc. 

I need to find some columnar celll buddiesNever see anyone posting about that though.

Tomm. I am probably doing the blood test. I didnt book an appt. as I will just play it by ear tomm with dh. 

My R hip has been killing me. I dont think its jut the osteoporosis, its a combo of other stuff too and I am sure if I go to the dr. they will say the s word. Usually when the drs. look at my x rays, see all my lovely internal birth defects too, they look like what are we going to do with this lady??? I always keep them on their toes for sure.

I think by my age my mom already had both hips replaced, so I am sure I am on borrowed time with this, just chak it up to the lovely bad genes in my family. 

My dh is home after his trip but leaving again next week. I am still researchng the food and wine but its pretty expensive so we shall see. Of course Prince Charming would do anything for me, so we shall see.   I think I am going to save some of his ff miles for our big anniv. trip next year. Maybe splurge on the GF etc. or split it with the BC or YC like we did before. 

I am still tired. One day I think I took a huge afternoon nap (not planned) , just sat in the chair and that was the end of it. 

Hope everyone is doing well, Update and check in when you can. 

Oh and ds 3 is  nursing school. He wants to practice bp checks on me. oh what fun!! Of course he is the youngest and he said most of the people are married ladies and almost everyone is already a medic, certified nursing assistant etc, so he is at a little disadvantage but working hard to soak it all in and study and learn etc.


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## dischick4778

Hi All, hope you're doing well!

I've been feeling good other than my tear duct situation.  Made another appointment with my eye dr for early October.  Don't think it will change much but it's not any better and it's embarrassing to carry around tissues and wipe my eyes all the time.  And forget about wearing eye make-up, not an option.

Other than that been doing well.  Back to working full time, my little one is in daycare.  It's hard and sometimes overwhelming, but I am doing the best I can.  At least I'm not going crazy much anymore.  This lower dose seems to be working for my personality.  

Wishing you all the best!


----------



## SingingMom

I just wanted to encourage any of you who are not pleased with your current endocrinologist to look for someone new!  After my first endo retired to specialize in research, I went to one of his associates , who he taught in med school.  Well, she must have only learned "book knowledge" from him, because her personality and bedside manner was opposite of him.  She was so clinical, so harsh, so cold, that I started dreading my yearly appt. 

FINALLY I got some backbone and asked around for suggestions of new doctors.  I just had my second appt with my new endocrinologist and I LOVE her!  I only wish I hadn't suffered so long!

Sent from my iPad using DISBoards


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## itsdisneytime

Hi all.   I have written in a few times in the past.  to bring you all up to date - I had papillary thyca removed 7/21/09 - this past July made my 3 year cancer free mark.  I did a radiation round and did right well with that (honestly the isolation for 10 days was the worst part).   I have had a lot of issues with weight gain and getting my synthroid right .. mostly in part because I had 2 parathyroids removed on accident during my surgery and so now I only have 2 left and my calcium is CONSTANTLY low --- im still on a 6 month check up plan and recently ive had to go back 6 weeks ago for blood work due to some symptoms I am having.    

Has anyone else experienced malabsorption of the calcium?   (if anyone else out there is unlucky like me to have had thier parathyroids taken i would love to talk to you).   I am not minimizing the fact that I had thyroid cancer but I will say i think the very low calcium is taking a toll on me.   I recently have started having very very dizzy spells like if i were walking on a treadmill and got off after a long walk and my legs still feel like they are walking - or if i were on a boat and got off and felt like i were still "bobbing" .. Ive checked my blood pressure often and its great, I do feel flutters in my chest sometimes but I am very stressed out with my personal and work life right now so I over look those flutters and affiliate them with stress ... my legs are retaining water (or swelling) ..  my feet bottoms are becoming very dry and crackly and of course ... im gaining weight again.    Endo upped my synthroid over the phone and told me to come in again in 6 weeks for blood ... seems some count that shows our thyroid level was 17 and he wanted it to be low like a 1 or below, he accused me of not taking my meds and totally overlooked the 10 lbs ive gained.   My doctor is supposed to walk on water according to SEVERAL other doctors ive seen and Im not saying i feel mistreated but, I sure do feel like no one is text book and im reaching out to see if what im explaining with these dizzy spells has happened to any of you.


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## JKMJ441724

itsdisneytime said:


> I had papillary thyca removed 7/21/09 - this past July made my 3 year cancer free mark.



May I be the first to say WOOHOO.


Good luck with everything.  Prayers to everyone on this board.


----------



## Christine

itsdisneytime said:


> Hi all.   I have written in a few times in the past.  to bring you all up to date - I had papillary thyca removed 7/21/09 - this past July made my 3 year cancer free mark.  I did a radiation round and did right well with that (honestly the isolation for 10 days was the worst part).   I have had a lot of issues with weight gain and getting my synthroid right .. mostly in part because I had 2 parathyroids removed on accident during my surgery and so now I only have 2 left and my calcium is CONSTANTLY low --- im still on a 6 month check up plan and recently ive had to go back 6 weeks ago for blood work due to some symptoms I am having.
> 
> Has anyone else experienced malabsorption of the calcium?   (if anyone else out there is unlucky like me to have had thier parathyroids taken i would love to talk to you).   I am not minimizing the fact that I had thyroid cancer but I will say i think the very low calcium is taking a toll on me.   I recently have started having very very dizzy spells like if i were walking on a treadmill and got off after a long walk and my legs still feel like they are walking - or if i were on a boat and got off and felt like i were still "bobbing" .. Ive checked my blood pressure often and its great, I do feel flutters in my chest sometimes but I am very stressed out with my personal and work life right now so I over look those flutters and affiliate them with stress ... my legs are retaining water (or swelling) ..  my feet bottoms are becoming very dry and crackly and of course ... im gaining weight again.    Endo upped my synthroid over the phone and told me to come in again in 6 weeks for blood ... seems some count that shows our thyroid level was 17 and he wanted it to be low like a 1 or below, he accused me of not taking my meds and totally overlooked the 10 lbs ive gained.   My doctor is supposed to walk on water according to SEVERAL other doctors ive seen and Im not saying i feel mistreated but, I sure do feel like no one is text book and im reaching out to see if what im explaining with these dizzy spells has happened to any of you.



Yes, I have had the dizzy spells EXACTLY like you described.  I get them if I am hypothyroid.  Your TSH was at 17.  That is pretty high and pretty hypothyroid.  No wonder you've gained weight, your feet are cracking, and you feel dizzy.  You are hypo.  Has your TSH ever been down to "1".  Are you using the same brand of thyroid preparation every time you refill?  Are you taking your thyroid med on an empty stomach and away from any other vitamins and calcium?


----------



## dischick4778

itsdisneytime said:


> Hi all.   I have written in a few times in the past.  to bring you all up to date - I had papillary thyca removed 7/21/09 - this past July made my 3 year cancer free mark.  I did a radiation round and did right well with that (honestly the isolation for 10 days was the worst part).   I have had a lot of issues with weight gain and getting my synthroid right .. mostly in part because I had 2 parathyroids removed on accident during my surgery and so now I only have 2 left and my calcium is CONSTANTLY low --- im still on a 6 month check up plan and recently ive had to go back 6 weeks ago for blood work due to some symptoms I am having.
> 
> Has anyone else experienced malabsorption of the calcium?   (if anyone else out there is unlucky like me to have had thier parathyroids taken i would love to talk to you).   I am not minimizing the fact that I had thyroid cancer but I will say i think the very low calcium is taking a toll on me.   I recently have started having very very dizzy spells like if i were walking on a treadmill and got off after a long walk and my legs still feel like they are walking - or if i were on a boat and got off and felt like i were still "bobbing" .. Ive checked my blood pressure often and its great, I do feel flutters in my chest sometimes but I am very stressed out with my personal and work life right now so I over look those flutters and affiliate them with stress ... my legs are retaining water (or swelling) ..  my feet bottoms are becoming very dry and crackly and of course ... im gaining weight again.    Endo upped my synthroid over the phone and told me to come in again in 6 weeks for blood ... seems some count that shows our thyroid level was 17 and he wanted it to be low like a 1 or below, he accused me of not taking my meds and totally overlooked the 10 lbs ive gained.   My doctor is supposed to walk on water according to SEVERAL other doctors ive seen and Im not saying i feel mistreated but, I sure do feel like no one is text book and im reaching out to see if what im explaining with these dizzy spells has happened to any of you.



I too have a calcium issue.  My para thyroids were re-implanted during surgery but the Dr thinks it didn't take so well.  I am on .25 mcg calcitriol and 1200 mg calcium daily.  If I forget to take the calcium one day I get numbness in my hands, legs, feet, and back and my teeth feel loose.  I have seen many doctors including my dentist and they all link it to the lack of calcium absorption. My surgeon says there isn't much they can do at this point.  

I do not have the other symptoms you describe though.  I am on a very high dose of synthroid due to the severity of the cancer I had.  Hoping you feel better soon!


----------



## mrsklamc

Christine said:


> Are you taking your thyroid med on an empty stomach and away from any other vitamins and calcium?



Yes! I remember another poster here was shocked that taking calcium at the same time as her thyroid pill could have such an effect.


----------



## JKMJ441724

Christine said:


> Are you taking your thyroid med on an empty stomach and away from any other vitamins and calcium?






mrsklamc said:


> Yes! I remember another poster here was shocked that taking calcium at the same time as her thyroid pill could have such an effect.



I take my thyroid pill and my multivitamin together every morning.  Is that wrong????


----------



## mrsklamc

Does your multi have iron in it? I know calcium and iron are bad to take w/ thyroid.


----------



## JKMJ441724

mrsklamc said:


> Does your multi have iron in it? I know calcium and iron are bad to take w/ thyroid.



yes.  yes, it does.


Craaappp.


I don't recall anyone telling me that.  They just said in the morning on an empty stomach with water.


----------



## Christine

Well, there's one problem solved then.  Many multivitamins have iron in them and most have calcium.  Both interfere.  Make sure you are also not taking your meds with calcium fortified beverages (OJ) or milk.  Take on an empty stomach and wait at LEAST an hour before you eat anything.  Wait at least 2hours for vitamins.  It's tough because I try to take both iron and calcium.  I ended up just taking my vitamins at night.


----------



## Granfan

So sorry for all you are going through. I have found out so much more on my own about mine and my daughter's condition from others and researching than docs have ever told us. I only waited 30 minutes to eat for a couple of years because that what was stuck on the bottle by the pharmacists.  A friend told me her endo told her wait at least 1 hour. It was months later that I learned about the calcium and just now learned about the iron.

UPDATE ON MY DAUGHTER:  She had her first thyrogen shot yesterday and another today.  She will start RAI tomorrow. She didn't get too sick, but did have stomach ache and slight headache. She will have a scan Friday.


----------



## mrsklamc

I'm so glad thyrogen was available for her. Total withdrawal is just awful.


----------



## Pembo

HI everyone. I posted back in April about my niece who was dx with thyroid cancer. She had a complete thyroidectomy and they took 20-30 lymph nodes. She was hospitalized for 2 weeks due to a leak. But the rest of her recovery was great. In August she had her RAI treatment and 6 months to the day that she first got a diagnosis, she received the news that she was clean!!!

Her only lasting symptom at this point is fatigue. Thank you all for your support and advice. And good luck to all of you...


----------



## itsdisneytime

Hi all. 

Wow, thanks for the fast responses ( I will check back sooner from now on ) ... thank you for the support and the guidance that is so appreciated by me.   I am not "happy" to hear that others have had the same symptoms as I am having but I will say that I am relieved.  

I do take my synthroid in the a.m first thing when I wake up and then I wait at least 1 hour before I eat anything - which is REALLY hard for me because I swear ... I feel like I wake up ready to eat asap.   

My parathyroids were unable to be reinserted back into me because they had already been sent away "my doctor thought they were lymph nodes" and they were sent for testing -- once they were out of a "sterile" environment the doc said they could not reinsert them into me -- she also said she had nightmares about my surgery (and yet no one thought there was any malpractice )  I also had a vein lacerated only to be found out after they sewed me up so they had to open me back up again to fix that vein that was internally bleeding.  My surgery took 9 hours and should have taken 4 -- i was in the hospital 9 days what should have been an overnight stay.   

The positive is that i lived to see another day and continue the fight --- I am hoping that by posting the "bad" about my surgery, perhaps it can help others who might have had similar issues or know someone about to go through the surgery.   

I wish I could make my immediate family understand how this feels -- the constant numb fingers - the tingling like if your feet fell asleep but only, its your arms that tingle not your feet --- the worst part is the swelling, the dizzy and the fatigue.   I hate to sound like negative nelllie and i am sooo grateful to have folks here that understand - most days i am optimistic but then other days :like today: when I pull up to the grocery store and Ive got to give myself a "pep talk" to go in and get er done its just frustrating!!! 

Wishing comfort and happiness for all of you tonight!


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## luvmarypoppins

Singing Mom - Yes I do love my endo. I guess I am frustrated because she probably is doing her best but she only has one other person who has the rare variant I have and thats a guy, whom this is usually seen in, not women. So I guess with me its kind of trial and error and stay on course and see what happens, so I think she is doing well with me, but guess I have to deal with the side effects because she doesnt want to mess with my synthroid any more right now. 

Jenn - I so hear you on the eye stuff. I should really get something done. It will be a while until all the stuff gets straightened out with my ds. Hopefully this will be in the spring or sooner when he will only be able to drive to school or work. Good luck with the house hunting.  I still get queasy thinking about the surgery. My endo said the eye surgeon is good. She seems nice but thinking of having my face pulled back is a little freaking me out right now. Good luck with the house hunting.

JKM - glad you can get the vitamin issue straightened out

Shannon - I am so sorry you are having all the para thyroid issues. I know its frustrating. I too had my vein severed during surgery. 1st surgery was 6 hours, 2nd was 2 hours and they couldnt find the bleeding, then sent me up to a room and then I almost died and had 15 minutes to live. That was another surgeon and I was his lst operation at the hospital. He just moved here. That was 3 hours and 2 days in a coma. God is Good! I am glad I am still here too. I have to have my dh help we with the grocery shopping. I am just too tired from it. My L arm really doesnt work well either so I need all the help I can get . Wishing you all the best

Micayla - hope you are doing well too. Do you still have your blog? 

Christine - guess your ds is thinking of colleges?

GranFan - glad your dd was able to get the thyrogen. First time I had it I got the nausea and headache. The 2nd time I had the shots for the l year follow up scan I was fine with a slight headache. Much better. 

Pembo - so glad to hear your niece is doing well. That is great news! She went through a lot with that leak for sure.

I got my blood test. Havent heard from the gp but that is normal with him. I am not holding my breath. Thank God I have my endo. I want to schedule the bone scan but dh is off again for a weeks trip tomm. I am getting weary of this. Ds 3 is loving nursing school. Friday he gets to go to the hospital for the lst time. Not the one he volunteered at. So he is happy.


----------



## Granfan

Luvmarypoppins: 
I know you are getting weary of so many dr's visits and procedures. I will be praying for your strength to endure them until you are better. 
Daughter was sick with nausea and headache but not too bad the first day of the thyrogen but after the rai pills yeaterday she has been pretty bad today.  Hoping tomorrow will be better when she will have the scans.


----------



## luvmarypoppins

Granfan - wishing your dd all the best today with her scans. Does she get the results right away?   Do you know what her dose was? I know that you said rai pills. Just curious if she got more than 1?   I actually had to swallow an anti emetic pill lst because my onc. said she had some guy actually throw up the radiation pill once so she does this as her standard practice now. Everyone gets an anti nausea pill first for the big radiation doses, not the follow up tracer ones though.

Well I made an appt. for my bone scan for this thursday. So we shall see. I am hoping the number is the same and has not gone down. Or else its back to the medication drawing board for my endo.

Trying to make a dental appt. too. Dreading that since I know my teeth got really bad post rai. That office is closed today.


----------



## portocall

I haven't been here in ages.   My endo recommended me for surgery since my last scan showed my large cyst had become mostly solid.  She did do a biopsy and it was inconclusive so instead of doing another we opted to do surgery in December and go with that.  I had cervical cancer in 2004 and the biopsy didn't show just how aggressive it was at the time.  Since I was pregnant it was a wait and see game with that one but the surgery ended up being way more than previously planned.  I am really nervous for this surgery go some reason.  What can I expect?


----------



## mrsklamc

They recommended you for thyroidectomy? I had a radical neck dissection, which is a bit more complicated than a thyroidectomy, and the surgery itself was not that big a deal for me- BUT I had an excellent surgeon and had no damage to my parathyroids, as many people here did. So my biggest recommendation is to get a surgeon that you know has done this surgery A LOT and done it well.


----------



## SingingMom

mrsklamc said:
			
		

> They recommended you for thyroidectomy? I had a radical neck dissection, which is a bit more complicated than a thyroidectomy, and the surgery itself was not that big a deal for me- BUT I had an excellent surgeon and had no damage to my parathyroids, as many people here did. So my biggest recommendation is to get a surgeon that you know has done this surgery A LOT and done it well.



Exactly the same advice from me!  ;-).  I am 20 years cancer free, had my surgery at age 30.   No Internet at that time, so DH and I spent time in the university library with the medical books.  All the books said to have a surgeon with x amount of thyroidectomies a year. When we asked my surgeon how many he did a year he smiled and said at least 5 a week.  Lol.  He was a very gifted surgeon. My new endocrinolgist said to me last week, "your scar is nonexistent. It's the best I've ever seen!". Pretty extensive surgery, too.  I had no problems afterwards.   Good luck to you!

Sent from my iPad using DISBoards


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## dischick4778

SingingMom said:


> Exactly the same advice from me!  ;-).  I am 20 years cancer free, had my surgery at age 30.   No Internet at that time, so DH and I spent time in the university library with the medical books.  All the books said to have a surgeon with x amount of thyroidectomies a year. When we asked my surgeon how many he did a year he smiled and said at least 5 a week.  Lol.  He was a very gifted surgeon. My new endocrinolgist said to me last week, "your scar is nonexistent. It's the best I've ever seen!". Pretty extensive surgery, too.  I had no problems afterwards.   Good luck to you!
> 
> Sent from my iPad using DISBoards



This is so good to hear.  Sometimes I think because I had the cancer so young it might come back and I might not make it through the next time.  I am truly encouraged hearing about people who are 20 yrs out.  Sorry to get off topic.


----------



## luvmarypoppins

portocall said:


> I haven't been here in ages.   My endo recommended me for surgery since my last scan showed my large cyst had become mostly solid.  She did do a biopsy and it was inconclusive so instead of doing another we opted to do surgery in December and go with that.  I had cervical cancer in 2004 and the biopsy didn't show just how aggressive it was at the time.  Since I was pregnant it was a wait and see game with that one but the surgery ended up being way more than previously planned.  I am really nervous for this surgery go some reason.  What can I expect?



Just wondering if your endo sent you to the ent and what did the ent say? I had 2 inconclusive fine needle biopsies and then I also had to have a pet scan and then a core biopsy. They already decided on surgery for me since the pet scan showed cancer but they didnt know what kind, hence I had a core biopsy. I wouldnt recommend it unless the dr. is really skilled and they need a conclusive diagnosis etc.  That was something like a caulk gun going in the side of my neck for the sample but my ent got what he wanted so he was happy and my dh who was with my took me to the Outback for dinner after that one.

Just wondering why you have to wait so long for your surgery too??

Wishing you all the best.


----------



## luvmarypoppins

Well I got my bone scan today and my R hip is killing me as usual. They said it takes 4 days to get to the endo, so I guess I will call in about a week or so and see what she says.

If all is well I guess its another reclast infusion for me in Nov. If the test numbers are not good then I guess she will have to come up with a Plan for me, so we shall see.

And on a disney note...my dh keeps talking about going to the Food and Wine. I saw a good deal at the Swan, you get the 6th night free so that is good plus you get a free room upgrade which he should get anyway since he is a starwoods member plus they are giving a $100 resort credit for food I think? and since we have the aps and the tiw card and I think my dh has enough points to get one way down on southwest for free for him, so it could be doable, but dh and I need to have a meeting of the minds. His idea of a  vacation and mine arent the same thing. He likes to sleep in because he is on vacation. I cant blame him for that, But I like to get out and get going as I have the most energy early in the day and wear out later on etc. So we shall see. If we go it will be really last minute I think. 

Hope everyone is well. Thinking of you all. Blessings always.


----------



## Granfan

Are you able to take pain meds for your hip? I hope your bone scan is not a bad report. Daughter missed a week of school (she's a teacher) for the RAI. I think it was like you said, just one pill and one for nausea. The full body scan results showed her neck "lit up" as the tech said and also remarked, "You will probably have to have more radiation". She actually never had radiation, just a complete thyroidectomy. The report said looks like residual rather than recurrent carcinoma OR thyroid tissue. So really still don't know. Oncologist sent her for ultrasound this week which showed "something." He offered radiation or another scan in 3 months. She is not happy with him, but I say no radiation until they know its cancer. They told her after the surgery there was no more cancer. 
I really hope you get to go on the trip to Disney!!


----------



## portocall

luvmarypoppins said:
			
		

> Just wondering if your endo sent you to the ent and what did the ent say? I had 2 inconclusive fine needle biopsies and then I also had to have a pet scan and then a core biopsy. They already decided on surgery for me since the pet scan showed cancer but they didnt know what kind, hence I had a core biopsy. I wouldnt recommend it unless the dr. is really skilled and they need a conclusive diagnosis etc.  That was something like a caulk gun going in the side of my neck for the sample but my ent got what he wanted so he was happy and my dh who was with my took me to the Outback for dinner after that one.
> 
> Just wondering why you have to wait so long for your surgery too??
> 
> Wishing you all the best.



I opted to wait because put gives me the most time to recover with the school schedule.  I don't get much leave per year and don't accrue it.  In case of complications, I will need the extra time.  June would have been better but Endo wasn't comfortable with that.  I go back monthly to have it checked and will absolutely push surgery up if there are changes.  I have already meet with the surgeon who does these surgeries regularly and i have friends who have used him for their thyroids with great success and minimal scarring.  The other reason for delay is it takes time to get me cleared for surgery unless its an emergency.  My last pregnancy came with an autoimmune disorder that caused my blood to clot and I had several mini strokes in addition to the cervical cancer.  Once the pregnancy was over that went away but based on history alone the anesthesiology dept has a fit, as I learned last year when I need my gall bladder removed.   There are a ton of hoops that I am working on jumping through now. 

The endo did not send me to the ent.   They have only done ultrasound and fine needle biopsies.  I will ask her her reasoning next week.


----------



## luvmarypoppins

Well I went to the dentist today. It went much better than I expected. I hadnt been there in so long. I am not good at the 6 month thing. Its more like a yearly thing with me.

I always floss everyday etc. No cavities except one tooth that needs a crown, but that has been an issue for a while.

Of course he tells me about your mouth being the gateway and the map of telling what is going on with your body etc.

Anyone have dental issues? Anyone have more dental issues post rai??

He said my bone is not so good. Always been a problem and I did tell him I got a reclast infusion so as to not lose more bone etc. 

Still waiting to hear the results of my bone scan and blood work. The blood work was just normal stuff. Gheesh. Its been like 3 weeks I think. For the blood work. The bone scan has only been a week.


----------



## mrsklamc

I have horrible issues post RAI & never did before. Go in Monday to see how the last few months have gone. 

Granfan- techs really shouldn't comment on what they think they see. I wouldn't worry about the 'lit up' comment.


----------



## Christine

Granfan said:


> Are you able to take pain meds for your hip? I hope your bone scan is not a bad report. Daughter missed a week of school (she's a teacher) for the RAI. I think it was like you said, just one pill and one for nausea. The full body scan results showed her neck "lit up" as the tech said and also remarked, "You will probably have to have more radiation". She actually never had radiation, just a complete thyroidectomy. The report said looks like residual rather than recurrent carcinoma OR thyroid tissue. So really still don't know. Oncologist sent her for ultrasound this week which showed "something." He offered radiation or another scan in 3 months. She is not happy with him, but I say no radiation until they know its cancer. They told her after the surgery there was no more cancer.
> I really hope you get to go on the trip to Disney!!



Granfan,

Somehow I missed your post but mrsklamc's post brought it to my attention.

If you daughter had surgery with no follow up radiation, then it there is absolutely thyroid tissue still in her neck that is "lighting up."  I have had two thyroid surgeons tell me that no surgeon is perfect enough to be able to remove all the residual cells.  This tissue or these cells stay in the neck and they produce thyroid hormone and behave just like a thyroid gland.  

Unfortunately, this tissue has the potential for having thyroid cancer in it also.  The doctor that removed your daughter's thyroid and said "no more cancer" cannot know that for sure.  

In my particular case, I had "multifocal" pappillary thyroid cancer.  This is where you not only have a "lump" of cancer but you get small cells of cancer that are invisible to the eye that are peppered throughout the gland.  It was imperative that I have radioactive iodine treatment afterwards.  I can tell you that if I had NOT had that treatment, I most definitely would be dealing with a recurrence today.

If your daughter did not have multifocal papillary but just had the cancer confined to one lump within the thyroid gland, then it's a pretty good gamble to opt out of RAI treatment.  If she did have multifocal and there is even a chance that there might be cells lurking in that "residual" tissue you really want to think about RAI.  A thyroid cancer recurrence 5-10 years down the road is not a good thing.  It is most often harder to treat and more aggressive.  In fact, there is some theory that the anaplastic form of thyroid cancer (the deadly kind) stems from papillary that is left in the neck for too long.

I'm sorry that sometimes my information is such a 'downer' but I would feel negligent if I didn't say what the bad side could be.


----------



## mrsklamc

Christine- I was thinking she had RAI already since she was off school for a week but maybe that was just the tracer?


----------



## Christine

mrsklamc said:


> Christine- I was thinking she had RAI already since she was off school for a week but maybe that was just the tracer?



I was just going by this statement:



> She actually never had radiation, just a complete thyroidectomy.


----------



## mrsklamc

Christine said:


> I was just going by this statement:



Yeah...but a couple sentences before that she said she was off school for the RAI. So maybe they just did a tracer dose and that's what she meant by RAI. Guess we'll just have to wait for Granfan to come clarify for us!


----------



## Granfan

Sorry everyone, I have been off the computer to take care of grandaughter who had sinus surgery. Yes, daughter has had RAI the week she was off from school. Is that also called radiation? Is it possible that just this one RAI treatment could kill the leftover thyroid tissue? And I said oncologist , but it was actually the endo in charge of all this. Thanks for the help!


----------



## Christine

Granfan said:


> Sorry everyone, I have been off the computer to take care of grandaughter who had sinus surgery. Yes, daughter has had RAI the week she was off from school. Is that also called radiation? Is it possible that just this one RAI treatment could kill the leftover thyroid tissue? And I said oncologist , but it was actually the endo in charge of all this. Thanks for the help!



Yes, one treatment of high-dose RAI can kill leftover tissue.  I'm sorry I was just so confused by your post.  So she had an RAI treatment.  When was that?


----------



## Granfan

She had the RAI about 3 weeks ago. A year and nine months after her surgeries to remove both sides of her thyroid. The endo had seen something on a test.


----------



## Christine

Granfan said:


> She had the RAI about 3 weeks ago. A year and nine months after her surgeries to remove both sides of her thyroid. The endo had seen something on a test.



Got it!!  So then it's perfectly normal to light up on the scan at this point.


----------



## dischick4778

luvmarypoppins said:


> Anyone have dental issues? Anyone have more dental issues post rai??



I feel like I have dental issues but the dentist thinks it's all in my head.  He cannot find anything wrong which is good.  However, I feel like my teeth are loose or weak.  I cannot explain it but when I bite into something hard like an apple, carrot or hard bread it pains me, like a nerve pain of sorts.  Who knows.

No luck on the baby front.  I love my son dearly but the thought of this thyroid thing taking something else away from me, like having more kids, is just annoying.  Oh well.  We signed our contracts and gave in our down payment, so the house thing is coming along.  Hoping to hear on a closing date soon.  Excited and nervous all at the same time.  

Hope everyone is well!


----------



## luvmarypoppins

Hi everyone

Jenn - So happy to hear your good news about the house. I am sure you will love your own place. Sorry you are dealing with the TTC issues. 

Nothing too much happening. I am just generally tired as usual. I think I might be getting a stye or something in my R eye, not the L eye that needs the surgery. I really dont want to go back to that dr. right now because she will push me for the surgery for sure and I am not emotionally ready to deal with that right now.

I scheduled my reclast infusion for Nov. 12th. I think before that I need a mammo too. I need to get a flu shot. And throw in 2 caps I am suppose to get too. I think I will tell him to just do 1 and then its off to Disney Nov. 26. I waited too long to get the tickets. So expensive. Glad we have our southwest vouchers for being stuck 4 hours in Orlando in May, that will help $100 each

Update when you all can.


----------



## luvmarypoppins

ok - stupid synthroid question of the day, shouting out to all my thyroid gals...

What if you accidently take 2 150 pills in one day?  Hmm, does that mean I will be a hyper 300 person today? But then again with the impending hurricaine I am hyper anyway etc.

Jenn, Christine and anyone else in the path of Sandy, stay safe.


----------



## mrsklamc

It's fine, just skip taking it tomorrow. My endo has one patient with a terrible time remembering who takes 7 pills every Sunday. I'd be scared I'd forget on Sunday.


----------



## dischick4778

Anyone near the hurricane please be safe.  We are home with food and water all set.  Just hoping not to lose power.  Wishing I was somewhere warm and sunny, but I will enjoy being stuck home with my guys.


----------



## luvmarypoppins

Jenn - I m home with most of the guys, poor ds24 had to go to work. 2 colleges for the other 2 ds and dh work closed

Well grab a drink and sit and relax and read my story of..my lovely pre trip to the emergency room before the hurricaine last night.

Oh yeah, yest. I was having so much pain in my L back ribs, hard to breathe and move and then dh and ds20 (my nursing son to be) see my L back is swelling and puffy etc. This is not good. I have been in pain since Thurs. I just about cant take the pain anymore and I can take a lot of it. 

So we go to the er. Both the resident and the regular dr. say I have such an "interesting" story. (They are talking about the cancer, near death, stomach surgeries etc). I said, yes I do. I told the dr. to think outside the box with me. 

He concludes its either muscle or blood clot. Great. He wants to do a chest ct. I said,hmm, not good with iodine. He says the benefits outweigh the risk and since I dont exercise much I am prime blood clot candidate, oh what fun.

So 9 tubes of blood later, 9 hours later, 3 chest x rays, a ct chest scan with iodine contrast, 2 bags of iv fluids, they conclude...its a muscle injury.

 I am happy. He said take some pain meds, which I am not having dh get right now in the hurricaine, and put heat on it. Its still a pain and hurts a lot. The swelling is getting better though.

So now I have in the back of my mind about the iodine etc. I am suppose to get the reclast soon and i just had that blood test on sat. Hmm, I will run this all by the endo when I see her in 2 weeks. 

I gotta say those health care people work their butts off at the univ. hosp. here. Wasnt too happy going because of all the past stuff but it turned out ok. PTL!


----------



## mrsklamc

I am so glad you are ok. What is the problem with getting an iodine scan? As far as I know it is ok as long as you aren't going to do the LID/scan within a certain amount of time...But I don't have all your complications, though.


----------



## dischick4778

We made it through the storm!  Never lost power and thankfully work has and continues to be closed so we have not left the house.  It was scary at certain times with the winds causing trees to break but luckily I cannot complain of any major damage.  I cannot say the same for some of our friends who homes were too close to the shore and now their furniture is literally floating in their house.  It is very sad for many people in our area.  Feeling very fortunate.

Sorry to hear you aren't feeling well luvmarypoppins and hoping you are better soon.  It's a helpless feeling being ill and stuck in a storm.  Hoping all goes well for you!


----------



## luvmarypoppins

Jenn - snow, snow, we have had enough plus our power went off twice today. How are you doing?

We all could use all the prayers you have for the NY and NJ metro area. 

Hmm, should I be concerned?

Micayla - I believe you could give some insight here, especially since you had the spect scan.

Just got a letter from the er yest, saying my "abnorma" test results need to be discussed with my dr.

Of particular note and what is scaring me the most, so much so I had a little crying fest last night and refused to tell my ds what is going on. Thank God dh is away.

They say there is a 2.5 cm nodule in my lung. It has increased from 0.5. They used an old pet scan to compare it with. 

I am so glad I am going to the endo on monday for the infusion anyway. I am bringing all the papers and she can pull my electronic records etc. 

That is why I go to the univ. hosp. Love the electronic records. Everything is in one place etc.

Oh and I am also eating a lot, a lot of chocolate.


----------



## mrsklamc

LMP- My spect scan was kinda an abundance of caution thing, they thought that they kind of maybe saw something, and wanted to be sure. When does your DH get back? I will be praying for you.

Got referred to a reproductive endo yesterday...wonder how many people have two different endocrinologists! 

Do you guys have trouble with dry skin since your thyroidectomy? Anyone found really great products to help with that?


----------



## Christine

Just saw that Brooke Burke announced she has thyroid cancer.

I always hate reading the media blurbs on this.  The "famous people" always sound so ridiculous.  She didn't sound too bad but I think she exaggerated how big her scar is going to be.


----------



## Christine

mrsklamc said:


> Do you guys have trouble with dry skin since your thyroidectomy? Anyone found really great products to help with that?



I have had dry skin since way before thyroid cancer so I can't blame it on that.  It only gets worse as I get older.

I use straight-up Vaseline on my face.  I let it sit on there for a few minutes and then blot off the excess before bed so my pillow is not disgusting.  In the morning, I reapply after washing face.  I let it sit there again while I get dressed, put my hair products in.  Then I wipe it off fully and apply my makeup.  It is the ONLY think that keeps my face from flaking.

For my body, I buy the tub of Cetaphil cream at Costco and slather it on after each bath/shower.  Only thing that keeps me from itching.

I'm a mess.


----------



## mrsklamc

Christine said:


> Just saw that Brooke Burke announced she has thyroid cancer.
> 
> I always hate reading the media blurbs on this.  The "famous people" always sound so ridiculous.  She didn't sound too bad but I think she exaggerated how big her scar is going to be.



Yeah a straight up thyroidectomy is a pretty small scar...I can't believe she found out in July and waited this long. I wanted it OUT.


----------



## luvmarypoppins

Micayla - I hope you like the repro endo. I am sure that is going to be a journey in itself. My cousin did all that too. 

I saw about Brooke too. Hmm, maybe she will post annon. on thyca?

My skin problems are always pimples . I t never ends. I feel like a teenager in an old lady body

My skin doesnt itch too much. 

And on the hurricane front, my one ds scored gas yest, dh is coming home today and its his rationing day so he can get some. Another ds got some but only had $20 on him. Its still a worry. My one ds is doing a food drive helping our church for a mission on sat. at a grocery store etc.

My infusion is Mon. The worst side effects could be the high fever and dillusional for 2 days again but she said I shouldnt get those side effects again. Hmm, almost like the thyrogen shot.


----------



## angwill

mrsklamc said:


> Yeah a straight up thyroidectomy is a pretty small scar...I can't believe she found out in July and waited this long. I wanted it OUT.



She also stupidly said that thyroid cancer is the good cancer to get.  What an oxymoron.


----------



## Christine

angwill said:


> She also stupidly said that thyroid cancer is the good cancer to get.  What an oxymoron.



Geez, not that again.


----------



## luvmarypoppins

Well I showed my dh the papers from the emergency room too. He is as confused as me. He also noted it kept saying decrease in size while they quoted exact numbers that showed an increase in size. We will see what the dr. says tomm.

Meanwhile, the ds have been oh so nice to me. I guess they dont want to add to my already stressed out stuff. 

Oh and I thought my dh was going to stay with me. Oh no, he said he is dropping me off because he has a meeting with someone at the univ. for a project he is working on. This is actually a day he is off from work, not one he even took off.  Umm, not like he was just gone for a week, such is my life. I guess I will just listen to what the endo says etc.  

I already told him about the vacation. He always wants to sleep in late etc. I cant blame him as its his actual vacation, but I like to get up and out early and that just never happens. Its so annoying. I am not a rope drop person but I like to get there 10 ish and with him its always no earlier than 11 etc.


----------



## luvmarypoppins

Back from the endo.  I did not get the infusion because they are not doing any infusions in the office anymore. I have to go to an infusion center which she filed out the paperwork for me for. It was a scene as dh was being obnoxious to the nurse and embaressing me in the waiting room. When they took my bp it was 175/110  I told the nurse I was going to see the dr. because I had papers from the er that needed to be discussed. Dh kept saying you are a scared bunny, I need to advocate for you etc. I said I can advocate for myself and shut up etc.

When we finally saw the dr. She said she had to go call the radiologist and page her. She then came back and said..get this. It was a typo!! It was not 2.3 which showed an increase. it should have been .23 and the radiologist is correcting my record immediately. Dh did say, what a difference a decimal point makes.

The endo does not like the heart stuff and filled out paperwork for me to be seen by cardiology. So those are next. Oh and after I told dh to shut up they took my blood pressure again and it was 110/75. He said it was because I got good news. I told him no it was because I told you to be quiet. So now my new rule is, if you are not going to be quiet and since I dont have a car to take myself anywhere then he needs to stay in the waiting room. Gheesh, this is more stress I dont want to deal with.

Well at least the trip is almost here. I made the reservations for the wheelchair and towncar this morning. I am still on the fence about MVMCP. Dh does not enjoy it. I would like to go. He would just ruin the time by saying how expensive it is etc. We shall see. 

Micayla - do you have an appt. with the repro endo yet? Wishing you all the best.

Hope everyone is well.


----------



## mrsklamc

Oh my gosh to put you through all that from a typo! At least it wasn't bad news. 

The first appt they had was Dec 17 and I told them I could take it, but that my job is very flexible and if they have any cancellations I can make it there at the last minute. She said "Oh, Ok! I will put you on that list then. We probably can get you in earlier." I was surprised how optimistic she sounded, but I haven't heard from them so far.


----------



## Tanzanite

Imet with my edicronologist who put me in touch with a surgeon her husband had had his thyroid cancer removed  with i came here to the hospital monday for removal of my th yroid  t oday is Thur and i am freaking out because said my calcium levels havent come up why  he told me when i came very small persentagle have that happen i want to go home my kids are at home with my husband  have problems with my oldest says hes fine but when i phoned home he was not pleasant been here on my own so fed up does this happen nurse upset me  by telling me havent seen doctor since yesterday shall i get new doctor when out has upset  my neighbour dropped me off monday been alone since didnt tell my mum in london not strong so hope ok by weekend to talk to her


----------



## Tanzanite

Tanzanite said:


> Imet with my edicronologist who put me in touch with a surgeon her husband had had his thyroid cancer removed  with i came here to the hospital monday for removal of my th yroid  t oday is Thur and i am freaking out because said my calcium levels havent come up why  he told me when i came very small persentagle have that happen i want to go home my kids are at home with my husband  have problems with my oldest says hes fine but when i phoned home he was not pleasant been here on my own so fed up does this happen nurse upset me  by telling me havent seen doctor since yesterday shall i get new doctor when out has upset  my neighbour dropped me off monday been alone since didnt tell my mum in london not strong so hope ok by weekend to talk to her



meant problems with husband not son my sons very good with my younger twins


----------



## Tanzanite

Tanzanite said:


> meant problems with husband not son my sons very good with my younger twins



 By the way the scar not very big my doctor used a glue and it wont be very noticable the doctor said my thyroid was massive


----------



## luvmarypoppins

Hang in there Tanzanite. Unfortunately sometimes the levels do not come up.

Did they tell you that your parathyroids were damaged during surgery? Sometimes if they are moved etc. they do not reimplant very well. I know one of our posters Jenn has had this problem. She has to take calcitrol. Maybe she can chime in and answer more.

Do you have drains in right now? My surgeon also said my thyroid was huge. My one tumor was 12.5 centimeters. The biggest he has seen I think he said with my type of cancer. I also had another 4 cent. tumor on the L side of my neck.

It does get better. But its a journey, so just take it one step at a time. Its been 3 years for me. We all handle things in our own way in order to deal with it. My faith brings me a lot of comfort.

Wishing you all the best. Blessings to you. Feel free to ask anything and hopefully someone can chime in and help you.


----------



## Tanzanite

Ihad  a completly taken over thyroid  by cysts and goiters they said the thyroid gland went deep in to my chest  since i was in my teens had so mant biopsys and radioactive scans  and my doctors could not biopsy every one to so she suggested surgery  they were growing bigger every year but not cancerous they told me after thyroid removed  they said i had lost one of the para glands  need to talk to him  i am waiting on doctor to come back to see me been two days since i saw him i did not understand how serios low calcium is  said i could go home but go emergency room if had tingilng have to talk to doctor. m y nightmare is my poor kids have to stay with my husband hes a nightmare but no choice hope i will know something soon thanks for your support ive been here on my own since Monday my freind offered to bring  kids to hospital but not wanting to get them sick before holidays so they havent seen me in 5days i miss them but better for them


----------



## Tanzanite

Tanzanite said:


> Ihad  a completly taken over thyroid  by cysts and goiters they said the thyroid gland went deep in to my chest  since i was in my teens had so mant biopsys and radioactive scans  and my doctors could not biopsy every one to so she suggested surgery  they were growing bigger every year but not cancerous they told me after thyroid removed  they said i had lost one of the para glands  need to talk to him  i am waiting on doctor to come back to see me been two days since i saw him i did not understand how serios low calcium is  said i could go home but go emergency room if had tingilng have to talk to doctor. m y nightmare is my poor kids have to stay with my husband hes a nightmare but no choice hope i will know something soon thanks for your support ive been here on my own since Monday my freind offered to bring  kids to hospital but not wanting to get them sick before holidays so they havent seen me in 5days i miss them but better for them



they took my drain out an hour ago that was uncomfortable have iv with calcium running through  plus had so many pills .


----------



## Tanzanite

luvmarypoppins said:


> Hang in there Tanzanite. Unfortunately sometimes the levels do not come up.
> 
> Did they tell you that your parathyroids were damaged during surgery? Sometimes if they are moved etc. they do not reimplant very well. I know one of our posters Jenn has had this problem. She has to take calcitrol. Maybe she can chime in and answer more.
> 
> Do you have drains in right now? My surgeon also said my thyroid was huge. My one tumor was 12.5 centimeters. The biggest he has seen I think he said with my type of cancer. I also had another 4 cent. tumor on the L side of my neck.
> 
> It does get better. But its a journey, so just take it one step at a time. Its been 3 years for me. We all handle things in our own way in order to deal with it. My faith brings me a lot of comfort.
> 
> Wishing you all the best. Blessings to you. Feel free to ask anything and hopefully someone can chime in and help you.



Luv marypoppins did you have your thyroid removed are you ok now doctor made it seem so easy guess i should of researched it more love your name mary also one of my favorites.


----------



## mrsklamc

Tanzanite- Sorry I'm just a little confused-lots of info at once. You just had your drain out? When was your surgery?


----------



## Tanzanite

mrsklamc said:


> Tanzanite- Sorry I'm just a little confused-lots of info at once. You just had your drain out? When was your surgery?



i had my drain out a few hours ago i had surgery on Monday i am still waiting for doctor to go everything with me.


----------



## dischick4778

Tanzanite said:


> Ihad  a completly taken over thyroid  by cysts and goiters they said the thyroid gland went deep in to my chest  since i was in my teens had so mant biopsys and radioactive scans  and my doctors could not biopsy every one to so she suggested surgery  they were growing bigger every year but not cancerous they told me after thyroid removed  they said i had lost one of the para glands  need to talk to him  i am waiting on doctor to come back to see me been two days since i saw him i did not understand how serios low calcium is  said i could go home but go emergency room if had tingilng have to talk to doctor. m y nightmare is my poor kids have to stay with my husband hes a nightmare but no choice hope i will know something soon thanks for your support ive been here on my own since Monday my freind offered to bring  kids to hospital but not wanting to get them sick before holidays so they havent seen me in 5days i miss them but better for them



Hang in there!  I too had issue with my para thyroid and 2 years after my surgery I still have trouble with calcium.  According to my doctors I may never be able to absorb calcium correctly anymore and the best thing I can do is take calcitriol and lots of calcium each day.  If I miss a dose or don't eat enough calcium foods in a day I have numbness and tingling in hands, feet, back, etc.  Everyone is different but this has been my experience.


----------



## Tanzanite

dischick4778 said:


> Hang in there!  I too had issue with my para thyroid and 2 years after my surgery I still have trouble with calcium.  According to my doctors I may never be able to absorb calcium correctly anymore and the best thing I can do is take calcitriol and lots of calcium each day.  If I miss a dose or don't eat enough calcium foods in a day I have numbness and tingling in hands, feet, back, etc.  Everyone is different but this has been my experience.


 
i am doing the same as you taking tums supersize 6 times a day  calitriol morning and night i have tingling in hands mouth  did you have shortness of breath feel like hell sorry if bad choice of word but i did not know what could happen like this   the pharmacy when i picked up medicine thought excessive amount  of calcium said about kidney  stones but  didnt understand   i may well be in same position  its horrid  do you feel better though or always  feel horrid were you feeling bad when you came home from hospital  medicine making me breathless said this happens .


----------



## luvmarypoppins

Sorry you are dealing with all this post op stuff. I had lots of complications too so just try and get some rest when you can. Your body has been through an ordeal.

Did your dr. go over everything with you? I hope you are comfortable with him/her.

I guess a lot of your care plan is going to depend on the pathology report.


----------



## Tanzanite

luvmarypoppins said:


> Sorry you are dealing with all this post op stuff. I had lots of complications too so just try and get some rest when you can. Your body has been through an ordeal.
> 
> Did your dr. go over everything with you? I hope you are comfortable with him/her.
> 
> I guess a lot of your care plan is going to depend on the pathology report.



Thank you i feel very comfortable with my endocrinologist not so fond of the surgeon  was dissapointed  with after care at hospital my endo called me last night i went to get my labs done yesterday at a lab near my house as the hospital i went to was  not close  by i wanted to go to endo office but the surgeon said wanted to get results back same day when i had blood drawn  the nurse said would not get them back same day so could of gone to my endo so hope get  results bit annoyed going to lab dont know when im comfortable with nurses i know. im finding it hard to care for 3 children as well as my self as i have a  problem with the man im married to that put stress on me as i relied more on friends while i was in hospital  its hard when you have no one to support you my husband has not spoken to me since night before i went to hospital  but i knew i cant relie on him as he is a problem i have lived with for long time i am trying to get better so i will not deal with him right now sorry im a mess .


----------



## luvmarypoppins

Just want to say Happy Thanksgiving everyone. As always I am so blessed to be alive.


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## dischick4778

Tanzanite said:


> i am doing the same as you taking tums supersize 6 times a day  calitriol morning and night i have tingling in hands mouth  did you have shortness of breath feel like hell sorry if bad choice of word but i did not know what could happen like this   the pharmacy when i picked up medicine thought excessive amount  of calcium said about kidney  stones but  didnt understand   i may well be in same position  its horrid  do you feel better though or always  feel horrid were you feeling bad when you came home from hospital  medicine making me breathless said this happens .



It took months to feel better.  But now two years later I feel as normal as I think I'm ever going to feel.  I really cannot complain.  It is my own fault if I miss a dose, as long as I take what I'm supposed to I feel good.  My endo monitors the calcium levels closely so that I don't get stones.  She also tells me to drink lots of water because that will help prevent stones as well.  Hoping you feel better soon!!


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## luvmarypoppins

Christine - hope you are ok. Havent seen you post in a while

Well Dh and I are off to Disney tomm. and the Beach Club.

Of course there will be the usual food and yummy stuff.

Talked dh into going to MVMCP on 11/29. Glad we got the ap discounts. 

My knee has been bothering me, so I am taking the brace and of course the wonderful pain killers I got from my er visit for my ribs/muscle sprain.

I think I am overpacked, but with this weather, you just dont know what to pack. Have to have capris, long, sleeve, short sleeve, sweatshirts etc. May is so much easier to pack for.


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## Christine

LMP--thanks for asking.  Yes, I'm doing well just have been distracted with my son's college applications.  I'm having to ride him FAR too much to get it done.  He's had it.  Probably my fault for encouraging to apply to so many schools, but the colleges in Virginia are EXTREMELY hard to get into so I didn't feel "safe" with just two.

I have my annual endocrinologist appointment today.  I don't know why these things make me nervous but I'm nervous.


----------



## ILoveMyDVC

This is my story.  It is slightly long and will appear off-topic - it is not.

Had trouble concentrating, dealing with anger, insomnia, anxiety, panic attacks, nausea, stated putting on weight 20 lbs all together.  Previously, I had been healthy, average to less than average weight.  Never had surgery beyond wisdom tooth and D & C years ago.  Had suffered from PTSD 5 years ago.  Currently working in a very high stress job 10 -15 hours a day.  I begged my doctors to test my thyroid.  Blood test was done and I was told the numbers were fine.  He says it’s middle age and menopause (hello, I am on the pill but whatever)

It’s February and I am sitting in stylist’s chair getting hair done.  I look into the mirror and have a sudden sense of dread that I am not okay.  I even ask my stylist if I look okay to him.  Poor thing is only 23 and he starts worrying about a heart attack because he read that women have different symptoms.  I am most certainly not having a heart attack but I don’t look or feel right.
At work one week later when hit with a sudden horrific pain in lower left flank. I head off to meet my husband for dinner and never make it beyond 5 miles because the pain is too severe. 

Swoop into urgent care clinic - nurse and doctor are sure it is a kidney stone.  They send me at 8:00 p.m. to get a CT scan to check for size.  Technician looks at me funny and says that my doctor will call....okay.  I head over to the pharmacy to fill the script for the pain killers when the phone rings while standing in line.  Doc calls and says they didn't find a stone.  I start arguing that the pain is real  and still terrible despite the shot they gave me.  He then tells me that they found 15 lesions on my spine and pelvis and is indicative of metastasized bone cancer.

I drive home and call my OB/GYN - doc on call is one of the original partners - he calls me back and says they will immediately want to check for lung, colon, ovarian and breast.
On the next day ( a Friday, of course!), one of the staff  ob/gyns walks in and says, 'Why are you here?  You need an oncologist.  We can't help you!"  My DH gets very, very upset and I end up at our state's finest hospital.  Admitted through emergency with potentially a broken spine.  They do an MRI and send me home.  
Next week, my GP comes back from vacation - he laughs all of it off - says it's going to be nothing but orders chest x-ray and ultrasound of thyroid. 
In the meantime -  MY ob/gyn that is still on vacation calls after his nurse alerts him to what happened and says he wants the lesions biopsied NOW.  GP is very angry and suggest OB can fly home and stick the needle in my back himself.  

So, I am getting the ultrasound of the thyroid and I ask to speak to the radiologist.  There are nodules but that is supposedly common for my age (46).  He asked if there are any other findings.  I tell him about the lesions on my spine and pelvis from the CT scan and he says I will need to get a biopsy.  GP is pissed that I spoke to the radiologist myself.  He thinks it is a waste of time.  Four days later I have the biopsy of the thyroid and the results are benign. 

My OB/GYN returns from vacation and calls me in for an exam and then asks me to come to his business office.  (Haven’t been in that office since miscarriage in the 90’s).  He starts to give me the speech about thyroid tests and science not up to date and is basically prepping me that my numbers aren’t going to be quite where they should be for treatment but that he is going to treat anyway with my consent because women get jerked around with this stuff all of the time.  LOVE HIM.  Except, the lab faxes over .52 POINT 52 not the 6-8 he expected – NOT EVEN CLOSE.  So he sends me to an MD that specializes in diagnostic work.  

She does a two hour intake and then wheels her chair to face me nose to nose and says that I really need to leave my job if I want to survive.  She suggests a month long retreat – not quite to a psych hospital but sort of a meditative spa….just where are these places and who can afford them, I do not know...but I digress.  

Anywho, during this time, I am getting more and more frantic, docs, counselors want me to go on SSRI (NFW!).  I see a neuromuscular oncologist who says the lesions are just hemangiomas and boney islands.  OKAY…and the diagnostician is concerned about one of my thyroid test results – it should be no higher than 55 but mine is  928….she never gets back to me.  I am having some very dark thoughts and panic attacks and nausea, etc….

I see GP in August .  Beg and cry that something is wrong.  He says I should probably see an endocrinologist and gives me a name.  Endo isn’t taking new patients.  Oh and my numbers are going the right way – it’s now in the 700’s down from the 900s.  

Get appointment in September thanks to our department’s very persistent secretary.  Endocrinologist walks in and says, “Do you know how big that thing is?  It’s huge!”  I do not have any clue.  He explains that one of the nodules – there are 6 – is the size of a baseball and that he thinks it needs to come out particularly because the biopsy might not have been complete on something that big.  Please believe me that nobody on the street could see this thing- I am blessed with a very thin neck.   It did look a little puffy – but I chalked it up to middle age and other nonsense being pushed my way.  I agree that it should come out and begin search for surgeon.  Endocrinologist calls hospital lab because some pages are missing in the pathology report.  They think he wants them to retest the sample and OOPS – they made a mistake – IT IS MALIGNANT.  Just like that.  GP calls me in and says how sorry he is. 
I was scheduled for surgery on October 10th at Brigham and Women’s – see you later Rhode Island!  

Just for fun after reading some of the other posts – I had a root canal, endoscopy (1st), colonoscopy (1st) , and total thyroidectomy in 8 days.  
Four of the six nodules were malignant.  Papillary follicular variant.  

I had my Thyrogen shots on Monday and Tuesday.  Swallowed the RAI tracer dose yesterday and going for blood work today with a scan set for tomorrow.  AND because when it rains…in 2 weeks, I will be back at Brigham to have my gall bladder removed.  Giant stone.  Nausea was NOT in my head.
It is expected that I will have the full RAI in January.
That’s my story.  Thank you to whoever reads it.  It’s been a long fight.  BUT I WAS AND AM NOT CRAZY!


----------



## mrsklamc

Welcome! This thread has been very important to my coping with my cancer. I am sorry you had to go through all that...do you have to have surgery for the lesions on your spine now? 

I have always been very very grateful that my thyca diagnosis was not the result of a long, frustrating process.


----------



## ILoveMyDVC

mrsklamc said:


> Welcome! This thread has been very important to my coping with my cancer. I am sorry you had to go through all that...do you have to have surgery for the lesions on your spine now?
> 
> I have always been very very grateful that my thyca diagnosis was not the result of a long, frustrating process.



who knows?- *they* are still saying it is a coincidence.  The NP that did my pre-op said NFW!  She wants me to see a spine specialist in Boston as soon as this is done.


----------



## Christine

That is quite the story!!  It really bothers me how much women's symptoms get pushed off for "stress" and the use of SSRIs.  That has been a constant issue for me.  Each and every time I actually do have health problems.  Pisses me off.

I do hope you get the spinal lesions evaluted.  Follicular thyroid cancer has a penchant for spreading to the bones, while papillary likes to go to the lungs.  Since you have the follicular variant, you need to have that checked.  I did know a woman way back on the original AOL thyroid cancer support group that had thyroid cancer mets to the spine.  She did end up with some pins in her back but her cancer was controlled and she had no further spread once treated.  But she required very close follow up due to the bone mets.  I really do think you should push for a biopsy once things calm down for you.


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## ILoveMyDVC

I sit here reading this and just know it is going to be in the bones.  Bet I don't get any answers until Tuesday.  So sorry I am having the scan done in R.I.  At Brigham's, they tell the patient what they are seeing throughout the procedures.


----------



## ILoveMyDVC

Christine said:


> That is quite the story!!  It really bothers me how much women's symptoms get pushed off for "stress" and the use of SSRIs.  That has been a constant issue for me.  Each and every time I actually do have health problems.  Pisses me off.



Yes, yes, yes!  It is incendiary.


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## Christine

Ahhh...safe for another year!  Tg is undetectable and TSH is 0.4.


----------



## luvmarypoppins

Tanzanite said:


> Thank you i feel very comfortable with my endocrinologist not so fond of the surgeon  was dissapointed  with after care at hospital my endo called me last night i went to get my labs done yesterday at a lab near my house as the hospital i went to was  not close  by i wanted to go to endo office but the surgeon said wanted to get results back same day when i had blood drawn  the nurse said would not get them back same day so could of gone to my endo so hope get  results bit annoyed going to lab dont know when im comfortable with nurses i know. im finding it hard to care for 3 children as well as my self as i have a  problem with the man im married to that put stress on me as i relied more on friends while i was in hospital  its hard when you have no one to support you my husband has not spoken to me since night before i went to hospital  but i knew i cant relie on him as he is a problem i have lived with for long time i am trying to get better so i will not deal with him right now sorry im a mess .




Just wondering how you are doing and if you got your biopsy report back yet. Update us when you can. Wishing you all the best. Take care. Hang in there.


----------



## luvmarypoppins

Christine said:


> Ahhh...safe for another year!  Tg is undetectable and TSH is 0.4.



 Congrats on the good news Christine. We need to always hear from the long term survivors, gives us all something to look forward to.


----------



## luvmarypoppins

ILoveMyDVC said:


> I sit here reading this and just know it is going to be in the bones.  Bet I don't get any answers until Tuesday.  So sorry I am having the scan done in R.I.  At Brigham's, they tell the patient what they are seeing throughout the procedures.



I have read your story and my heart goes out to you. I too was misdiagnosed at first. Said it was great I actually lost 20 lbs. Didnt know why I was so tired and didnt know why I had sharp, stabbing itchy pains (total lack of b12).   I finally got some blood tests from him and it showed I had anemia so severe I was hospitalized for a week and had 3 blood transfusions.

In that time I had the colonscopy, endoscopy and stomach motility test. He saw the lymph node sticking out of my neck and said it was swollen and needed to get biopsied. 

I decided to find a dr. at the university hospital because they are clueless at our local hospital. 

A few more tests and a lot more biopsies and they found the thy ca.

Also like you after the thyroidectomy I couldnt have the full rai because I got a bowel obstruction from my old hernia so they had to operate on that, then it was infected and the wound would not heal and I had the surgeon and oncologist fighting over weather to give me the rai or not.

So my heart so goes out to you. You have so much, too much on your plate right now. I will pray for Gods peace for you during this time.

A friends of mines friend also had your type and it did spread to the bone but she had metal replacements for the affected areas and is doing fairly well for all she has gone through.

Wishing you all the best. Hang in there!


----------



## luvmarypoppins

I just clicked onto some article I wanted to read about Katherine Heigels adopted baby and there was another article there, People I think, that Brooke Burke said she is getting ready for her surgery this week and she just wants people to know that "she is not sick, but fine".

Hmm, wait til she has the rai and see if she is saying that.

I think she needs to do lots more research etc.


----------



## luvmarypoppins

Well we are back from our Disney trip. Our room was nice but had some maintenance issues which my wonderful dh fixed himself.

We had a full balcony and ate breakfast on it twice overlooking the lake sideways.

We saw the new fantasyland. Didnt get a chance to ride the wait was 70 min. standby. 

I didnt think Whoopi did such a great job at the candlelight processional.

MVMCP was nice. I dont know if I would do it again for a while though.

Dealt with a nasty cm. I was in the wheelchair watching the parade by LTT and was in the handicapped place. She asked if I could walk and I said, I can but I am sitting now. She said, do you have a red disability card. I said, I have never needed one. Then dh told her to leave me alone and go away because she was making me upset. I did tell her, here look I have cancer and pulled my shirt down by neck and showed her my lovely neck scar and dissection. She then proceeded to hassle the guy next to me in a scooter too. Honestly I think I am going to write Disney about her. At night we were in the same place for the MVMCP parade and had such a wonderful cm. She said I didnt need the card at all etc. 

I did a lot of walking though and just used the wheelchair like a walker.

I got a really bad sinus infection on sat. When we got off the plane, ran home and then to urgent care on sunday. The dr. said I need antibiotics, cough meds and nasal spray. Today I went for a mammo. I also had a dental appt. that I cancelled because I couldnt deal with that right now.

Can you believe we actually didnt book another vacation. The bounceback was no room discount just free dining. You have to buy tickets too and we dont need them because we have aps.

The food was so so. Nothing was memorable that much to me. DH favorite was the pot roast at LTT. I liked my salads at HBD and GFC. 

Hope everyone is doing well.


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## rockydek

I am so happy to have found this thread...Maybe I can get some information.
I just had an ultrasound on my thyroid...My Dr called  to set up an appointment with an Endocrologist , as a nodule was found. The appoinment is is for the end of January for a console. Thats all the info I was given..What could this mean?


----------



## Christine

rockydek said:


> I am so happy to have found this thread...Maybe I can get some information.
> I just had an ultrasound on my thyroid...My Dr called  to set up an appointment with an Endocrologist , as a nodule was found. The appoinment is is for the end of January for a console. Thats all the info I was given..What could this mean?



The doctor is referring you to an endocrinologist because they are the doctors that deal with thyroid nodules.  Your endocrinologist will probably do further bloodwork and get you to the right people for a biopsy if he/she feels it is necessary.  You are going in the right direction!


----------



## rockydek

Christine said:


> The doctor is referring you to an endocrinologist because they are the doctors that deal with thyroid nodules.  Your endocrinologist will probably do further bloodwork and get you to the right people for a biopsy if he/she feels it is necessary.  You are going in the right direction!



Thanks so much!


----------



## Piggeldy

Sorry to just butt in like this
I just need a place to whine a little. Just feeling a tad overwhelmed at the moment. And know that you will understand.

I was first diagnosed with Grave's disease in October 2001 (right after going on the pill and returning back from a rather stressful vacation in the US, trying to fly in on 9/11). I was as hyper as one can be - constant trembling, weight loss (about 20 pounds in two weeks), hair loss, mood swings, bad temper, insomnia... you name it, I had it.

I went on medication. Had regular blood tests, a lousy doctor but I got better. I changed my life (including some radical decisions to swith my major from Chemistry to English and split up with my then boyfriend, mostly for not being supportive), my blood work came back too low, I went off medication, I stayed well for years. Life was good.

"Things" just started creeping back into my life about 2 years ago. Weight gain (well, I had just gotten married and they do say you gain), anxiety (I just don't like people, is that a big deal?), panick attacks (it is normal to spend the whole weekend hiding under a blanket, right?), mood swings (I am a woman, it's hormones), fatigue (I had just started a new job, didn't get along with my colleague who has issues), stress (that's what you deal with, working 50 hour weeks and working on a doctorate that is not work related)... just little things. Noting major. Nothing I could really put my hand on. Well, I eventually went to see an new primary care physician, asked to have my thyroid checked and ended with a TSH of 4.3. What was diagnosed as Grave's disease was really the first flare up of Hashimoto's. Wonderful.

Around the same time my little cousin was diagnosed with thyroid cancer, my aunt had thyroid surgery due to Hashimoto's, my MIL had her thyroid removed because of small lumps and a large cyst. Did I mention that my grandmother as well as my grandfather also had their thyroids removed? And that I only know one side of my family...

I am rambling. Sorry.
Well, I went on medication (starting with 25mg of L-Thyroxin, then switched to 50) and suddenly I felt perfect! I had energy, I could do things, I didn't cancel appointments or change plans just because I "couldn't" do them, I didn't worry about crowds, we even went to watch fireworks with hundreds of people and I didn't mind at all, I started losing weight - slowly but steadily (20 pounds over a 6 months period without changing my eating habbits, I do eat rather healthily as it is), I got work done on my doctorate, I didn't sleep 14 to 16 hours on weekends (and still felt tired)... I was how I wanted to be.

For the last few weeks, I feel as I felt before. I notice I am falling back into my old habits. I cancelled something last night that I had been looking forward to for weeks! I couldn't go. I was sitting in my office crying, because I just couldn't do it. I have been gaining weight (obviously you can gain 10 pounds by eating a serving of cereal, a green salad with a tablespoon of dressing, an apple, a joghurt and a cup of soup a day... I guess I should just stop adding sugar to my cup of coffee in the morning  I eat less than I ever have and I feel so powerless). I spend every free minute in bed, hiding from the world. I don't answer the phone, I don't answer the door. I haven't had my period for three months. I gag when wearing a turtle neck. I can't concentrate, I make stupid mistakes (I can't even spell anymore and though English is not my native language at least I always felt comfortable in it), I feel like an idiot.

My physician thinks my thyroid levels are perfect. It can't be that. 

I feel as if I am going crazy. Either it is the thyroid... or I am sorry, I am depressed. I am sure you could blame my difficult childhood, my stressful work with bad work atmosphere (at least that situation will solve itself in February, my colleage will move to a different department and I won't have to worry about her "issues" any more), working two jobs while trying to get a doctorate, my husband's wish for children (that I don't share at the moment), money issues (we both went to university and are paying back study loans), going off the pill, multiple deaths and health issues in the family... but really, I don't think I am clinically depressed. I don't think I'd even notice those symptoms if it wasn't for the six months during spring/summer that they were completely gone, that I learned - again - who I am.

I have secretly started taking more thyroxine (now taking 62.5 mg every morning), which helped for a while. And am contemplating just trying how it goes with 75mg. What scares me most about that thought is that I would eventually have to tell my physician. When I first went there, he said we would work on a feel-good level and not look at the blood levels too much - but that's what he is doing. Otherwise he's great, very thorough, attentive, caring...

I haven't seen an endocrinologist since 2001 and nobody ever said I should. Can I just ask for that? Can I just ask to try taking more thyroxine? If I tell my physician that though I think I am showing a lot of signs of "mental health issues" I think it comes from my thyroid? I just feel like crap and I want it to go away!

Sorry for complaining. And rambling that much. I just need to let it out. And I simply don't know where else to do so.


----------



## luvmarypoppins

rockydek said:


> I am so happy to have found this thread...Maybe I can get some information.
> I just had an ultrasound on my thyroid...My Dr called  to set up an appointment with an Endocrologist , as a nodule was found. The appoinment is is for the end of January for a console. Thats all the info I was given..What could this mean?



Welcome. You are on the right track. Glad you are seeing the endo. They usually take so long to get an appt. with. Wishing you all the best. I am sure the end of Jan. cant come fast enough for you.


----------



## luvmarypoppins

Piggeldy - You sure have been through a lot. I would definetely see an endo. Its been way too long. You said 2001 was the last time? That is over 10 years! They are specialists when it comes to the thyroid.

I dont know how you can increase your own med. dose. You cant really do that here. 

Also there is a lot of thyroid cancer and history in your family. Has anyone had genetic testing or seen a genetic counselor. Some thyroid cancers are genetic. I think they were looking at me for the MEM syndrome or something like that.

I dont know if you can go to an endo yourself or you hae to be referred etc. Just make sure they are not a general type of endo and you need to get one that specifically deals with thyroid issues.

Wishing you all the best.

Have you had an biopsies or sonograms or is it just the blood work they look at?


----------



## wdwpluto

Hi all,

I've been having some hair loss and was referred to an endo. My TSH is 4.660, which she says is borderline hypo. She's leaving the decision as to whether or not to medicate up to me. Um... 

FWIW, I'm in my mid-30's, have recently been put on B12 shots and vitamin D for deficiencies and recently completed treatment for sweat gland cancer (a non-sun related, non-melanoma skin cancer). I'm an appropriate weight for my height, eat relatively healthy, exercise regularly (I've run 4 half marathons in a little over a year). Beyond the hair loss, I don't tolerate cold well, have gained some excess weight lately (<10lbs), and am rather fatigued (thought I'm not sure if that's more a symptom of an incredibly stressful year). Don't know if any of that info is helpful, but I thought I'd try to give a complete picture.

Any advice would be welcomed, you ladies really seem to know your stuff!

ETA - Also, my cortisol also tested low and she suspected adrenal fatigue. I had, shoot, I forget what it's called, a cortisol stress test? They took blood, gave me a drug, and took more blood after 30 minutes, then after 60 minutes to see if my cortisol was responding appropriately. The test came back normal, so no worries on that front.


----------



## angwill

wdwpluto said:


> Hi all,
> 
> I've been having some hair loss and was referred to an endo. My TSH is 4.660, which she says is borderline hypo. She's leaving the decision as to whether or not to medicate up to me. Um...
> 
> FWIW, I'm in my mid-30's, have recently been put on B12 shots and vitamin D for deficiencies and recently completed treatment for sweat gland cancer (a non-sun related, non-melanoma skin cancer). I'm an appropriate weight for my height, eat relatively healthy, exercise regularly (I've run 4 half marathons in a little over a year). Beyond the hair loss, I don't tolerate cold well, have gained some excess weight lately (<10lbs), and am rather fatigued (thought I'm not sure if that's more a symptom of an incredibly stressful year). Don't know if any of that info is helpful, but I thought I'd try to give a complete picture.
> 
> Any advice would be welcomed, you ladies really seem to know your stuff!
> 
> ETA - Also, my cortisol also tested low and she suspected adrenal fatigue. I had, shoot, I forget what it's called, a cortisol stress test? They took blood, gave me a drug, and took more blood after 30 minutes, then after 60 minutes to see if my cortisol was responding appropriately. The test came back normal, so no worries on that front.



IMO, I would wait and not start taking meds at a TSH level. 4.660.   The reason I would not is because once you start taking meds you will have to take them every day for the rest of your life.  That is something that I never thought about before taking meds for hypothyroidism but think about often now.  4.660 not a bad level and I have been higher than that on meds and been considered within range.  It might be all that you have been through throwing your body off and if you retest in 6 months or a year you may find your levels and your symptoms improve.  That is my advise but others may advise the complete opposite.


----------



## wdwpluto

angwill said:


> IMO, I would wait and not start taking meds at a TSH level. 4.660.   The reason I would not is because once you start taking meds you will have to take them every day for the rest of your life.  That is something that I never thought about before taking meds for hypothyroidism but think about often now.  4.660 not a bad level and I have been higher than that on meds and been considered within range.  It might be all that you have been through throwing your body off and if you retest in 6 months or a year you may find your levels and your symptoms improve.  That is my advise but others may advise the complete opposite.


 
Thanks for your thoughts! That's where my endo had me confused - she said "once you're on, you're on for live" but later that we could do a three month trial to see if they provided any benefit.  I know that I really need to clarify that with her (and I'm waiting for a call from her) but it's just all so confusing!

ETA: Also, my cholesterol is high and has been creeping up (though it could be hereditary) despite my almost vegetarian diet and exercise. I'm on 40% reduction medication which brought me down about 25 points in 3 months. Just realized I didn't throw that factor out there.


----------



## angwill

wdwpluto said:


> Thanks for your thoughts! That's where my endo had me confused - she said "once you're on, you're on for live" but later that we could do a three month trial to see if they provided any benefit.  I know that I really need to clarify that with her (and I'm waiting for a call from her) but it's just all so confusing!
> 
> ETA: Also, my cholesterol is high and has been creeping up (though it could be hereditary) despite my almost vegetarian diet and exercise. I'm on 40% reduction medication which brought me down about 25 points in 3 months. Just realized I didn't throw that factor out there.



Maybe she meant that they start you on a small dose and then every 3 months they check your TSH again till it is normal and then keep you on that dose for 6 months to a year and test again.  Another think I don't like about having to take meds for hypothyroidism is having to have blood drawn to check the levels for life.  

I have never had cholesterol issues with my hypothyroidism and I don't remember reading anything about it effecting the cholesterol.  I could be wrong and I am sure someone will be correcting me if I am. lol


----------



## wdwpluto

angwill said:


> Maybe she meant that they start you on a small dose and then every 3 months they check your TSH again till it is normal and then keep you on that dose for 6 months to a year and test again.  Another think I don't like about having to take meds for hypothyroidism is having to have blood drawn to check the levels for life.
> 
> I have never had cholesterol issues with my hypothyroidism and I don't remember reading anything about it effecting the cholesterol.  I could be wrong and I am sure someone will be correcting me if I am. lol



We decided no meds for now and test again in 3 months. Thanks for your help!


----------



## angwill

wdwpluto said:


> We decided no meds for now and test again in 3 months. Thanks for your help!



  Good luck in 3 months.  I hope your levels will be right on.


----------



## luvmarypoppins

wdwpluto said:


> We decided no meds for now and test again in 3 months. Thanks for your help!



Glad they are on top of everything and will be watching you closely.
Wishing you all the best.


----------



## luvmarypoppins

Micayla - wishing you all the best with the repro. endo on Monday. 

I hope you like him/her and that you can both be on the same page.

I am having a thyroid holiday so to speak. After new years its the blood tests, sono and my lovely 6 month endo visit in Jan. Also have the cardiologist and the infusion on my back burners. Dh is traveling again so we will have to do things around his schedule etc.


----------



## mrsklamc

Thank you...It's excluded from coverage in our insurance, so i found out yesterday that this initial appointment is going to be $400.  Of course,  it wil be more than worth it if it works, and a kid is far more expensive. I am intentionally not keeping track of our total expenditures for this, I think it would make me ill. 

Had a rough day emotionally yesterday... I think just because of the reality that we've gotten to this point...plus I think I'm hyperthyroid cause I've lost about ten pounds, but due to have that checked in a couple weeks again.


----------



## ILoveMyDVC

Thank you.  My scan showed less than 1% thyroid tissue left and Tg went down from 4 right after the surgery to to 1.9 after the Thyrogen and before the scan.   Will still be given RAI in January.
Had gallbladder out on Friday.  It's been quite an ordeal.  Teaching me a lot.  Hope I retain the lessons.


----------



## mrsklamc

Well the appointment with the fertility specialist really threw me for a loop, I figured we had all kinds of injections and things to go through before invitro even came up, the first thing they asked was if we were willing to try it. He says the success rate is so much higher, they prefer to just start with it instead of go through the emotional exhaustion...but I'm not sure we want to do it. Total information overload.


----------



## luvmarypoppins

mrsklamc said:


> Well the appointment with the fertility specialist really threw me for a loop, I figured we had all kinds of injections and things to go through before invitro even came up, the first thing they asked was if we were willing to try it. He says the success rate is so much higher, they prefer to just start with it instead of go through the emotional exhaustion...but I'm not sure we want to do it. Total information overload.



 Its a very private and personal matter that only you and your dh can decide together. My cousin and friend both went through it and it did not work for either of them. My friends got to adopt a baby from a friends friend they knew. My cousin ended up adopting a boy and girl from Korea. 

I do know my cousin ended up donating all the drugs or whatever they had left back to the fertility clinic because they were asked if they wanted to do this because some of the other couples stuff was not being paid for by insurance either. 

I think both of them tried it at least twice.

I would def. ask them their success rates because it varies among places etc.

That is why I said before, its such a personal journey. My prayers are with you. (and your dh too).


----------



## WDWDancer

mrsklamc said:


> Well the appointment with the fertility specialist really threw me for a loop, I figured we had all kinds of injections and things to go through before invitro even came up, the first thing they asked was if we were willing to try it. He says the success rate is so much higher, they prefer to just start with it instead of go through the emotional exhaustion...but I'm not sure we want to do it. Total information overload.




 My husband and I have just started this journey also.  We will do another round of fertility drugs next month, and then after we come back from vacation in Feb we will be meeting with them to discuss the next step (IUI or IVF).

 Do they think the thyroid (or lack of) is playing into this for you?  For me personally they say it is not "common" but the total thyroidectomy can cause the reproductive hormones to go a little crazy and this is what they think is happening.

My prayers are with you and your husband as you start this journey


----------



## mrsklamc

WDWDancer said:


> My husband and I have just started this journey also.  We will do another round of fertility drugs next month, and then after we come back from vacation in Feb we will be meeting with them to discuss the next step (IUI or IVF).
> 
> Do they think the thyroid (or lack of) is playing into this for you?  For me personally they say it is not "common" but the total thyroidectomy can cause the reproductive hormones to go a little crazy and this is what they think is happening.
> 
> My prayers are with you and your husband as you start this journey



I have no idea as unfortunately we didn't spend much time trying before they found my cancer. Today I am thinking that we might look into a second opinion.


----------



## mrsklamc

luvmarypoppins said:


> Its a very private and personal matter that only you and your dh can decide together. My cousin and friend both went through it and it did not work for either of them. My friends got to adopt a baby from a friends friend they knew. My cousin ended up adopting a boy and girl from Korea.
> 
> I do know my cousin ended up donating all the drugs or whatever they had left back to the fertility clinic because they were asked if they wanted to do this because some of the other couples stuff was not being paid for by insurance either.
> 
> I think both of them tried it at least twice.
> 
> I would def. ask them their success rates because it varies among places etc.
> 
> That is why I said before, its such a personal journey. My prayers are with you. (and your dh too).



They say 75% is their success rate. I understand the part about emotional exhaustion but it just seems like 4 months of clomid and straight to IVF is a huge step, and I feel that they really pressured us that even trying IUI was a waste of time and money. I just don't know.


----------



## luvmarypoppins

wdwdancer - prayers for you and your dh too as you begin the journey. Wishing you all the best


----------



## luvmarypoppins

hmm - should this bother me? It did really and I asked my ds about it.

We always send out an annual christmas picture. Had someone at church take it. I have on a v neck blouse.

Well in the "originall" picture, it shows a lot of veins by my neck and something sticking out from the collar bone area etc. Not bad, but noticeable as its my regular look etc.

Well when dh shows me the photo I ask him about it. I asked him if he
photoshopped my neck. He says, well there is a blemish thing etc.

I just felt kind of sad that he did that, he is going to be a nurse. I just felt like he couldnt leave well enough alone and didnt like what he saw etc. 

Its far away so its not an up close picture, but just the thought that he did that made me sad.

Am I nuts for thinking this way?


----------



## mrsklamc

I don't think they probably meant anything hurtful by it; I know in my own pictures there are lots of things I would like photoshopped so they might have thought you would like it!

I do think it's a pretty standard thing for photographers to do.

But, it's a very personal thing; I know that Sofia Vergara prefers not to have her scar photoshopped (though I frequently see pics of her with it done) and recently read the same thing about an actress with a birthmark that makes part of her eye appear darker; she prefers not to have it photoshopped but it usually is.


----------



## luvmarypoppins

I didnt type it right I guess.

I was trying to say my own ds photoshopped me, that is why I was upset. Its like he doesnt like the way I am etc.


----------



## mrsklamc

I would guess that he probably thought _you_ didn't like the way it looked and was trying to be kind.


----------



## WDWDancer

Quick question has anybody been diagnosed with Breast Cancer after Thyroid?

 I am 27 and discovered a thick knotty area Wed called the doc she had me come in  Thurs at 8 am did not like what she saw so she sent me for a diagnostic mamo, ultrasound, and biopsy. They have decided it is not a cyst but a solid mass my breast are very dense and the biopsy cells were undetermined/inconclusive. They have scheduled me for a "molecular breast imaging" test? 

I know the odds are on my side but this just feels so much like déjà vu if last year with my thyroid.


----------



## Christine

WDWDancer said:


> Quick question has anybody been diagnosed with Breast Cancer after Thyroid?
> 
> I am 27 and discovered a thick knotty area Wed called the doc she had me come in  Thurs at 8 am did not like what she saw so she sent me for a diagnostic mamo, ultrasound, and biopsy. They have decided it is not a cyst but a solid mass my breast are very dense and the biopsy cells were undetermined/inconclusive. They have scheduled me for a "molecular breast imaging" test?
> 
> I know the odds are on my side but this just feels so much like déjà vu if last year with my thyroid.



No breast cancer here but tons of breast issues.  I've had four fibroadenomas removed.  The first one when I was 14 and the last in my 40s.  Not pleasant.  Fortunately everything has been benign and I apparently have "busy" breasts.


----------



## luvmarypoppins

I also had a fibroadenoma removed when I was in my early 20's. It was as large as an egg. 

Wishing you all the best. Hang in there!


----------



## robynslp

New to this board. I have family history of thyroid problems but unfortunately don't know the exacts other than grandma, great grandma, and great aunt all had thyroid problems. Two years ago my sister went for a routine physical and her doctor immediately asked what was being done for her thyroid (it was enlarged to the point he saw it when he walked in). After several tests and  biopsies, they removed it. She urged me to find someone who would listen to our history. After several false starts, I found a nurse practitioner that read bloodwork based on the old levels and wanted a baseline ultrasound. I expected a clear ultrasound and was surprised with 8 nodules. We watched the nodules for the past 2 years and there was little change. For some reason, my NP really wanted to biopsy one nodule that was just barely big enough to worry about. Two days ago the dr called and said they read follicular neoplasms and I need to have a partial thyroidectomy. I have my first appointment to discuss all this on Wed. I'm apprehensive about surgery. So I am joining my sister in this journey. (As a footnote to my sister's journey, her thyroid regrew and had to be removed again!) 

I look forward to gaining insight into this new medical journey.


----------



## Christine

Welcome!!  

As you probably know now, nodules are very common in malfunctioning thyroids.  The more nodules you have, the less likely any of them are to be thyroid cancer.  Hopefully when you have your thyroidectomy, they will get a true reading on all of them.  My understanding is that a follicular neoplasm is a gray area--meaning they don't know if they are benign or malignant.  Mostly they will be benign.

What are your thyroid levels like?  Have you been feeling poorly?


----------



## luvmarypoppins

Just wanted to wish everyone a Happy and Blessed 2013 and as healthy as possible 2013 too!


----------



## robynslp

Met with the surgeon today and he feels very strongly that I need a partial thyroidectomy. He says this is the only way to rule out cancer. My sister who had a mutli nodular goiter thyroid removed thinks this is highly unusual. Surgeon doesn't care what thyroid levels are until after the surgery because to him this is not about thyroid function; it is about the pathology. Does this sound wrong to anyone else? My sister is certain that I really don't need the surgery if my levels aren't changing. I'm very confused. I want to listen to my dr but my sister is persuasive as well.


----------



## mrsklamc

Yes, that makes sense. I had no abnormalities in my _levels_ but I had extensive cancer. It is common to do a partial thyroidectomy, have it biopsied immediately, and then remove the whole if it's cancerous. They used to leave the other half if it looked ok, but that is no longer considered acceptable care- the cancer just comes back.


----------



## Christine

robynslp said:


> Met with the surgeon today and he feels very strongly that I need a partial thyroidectomy. He says this is the only way to rule out cancer. My sister who had a mutli nodular goiter thyroid removed thinks this is highly unusual. Surgeon doesn't care what thyroid levels are until after the surgery because to him this is not about thyroid function; it is about the pathology. Does this sound wrong to anyone else? My sister is certain that I really don't need the surgery if my levels aren't changing. I'm very confused. I want to listen to my dr but my sister is persuasive as well.



Your surgeon is right on.  They are concerned about pathology, not function.  Have a partial thyroidectomy.  They will look at every cell in what they remove.  If it's benign, you're done.  If not, the rest comes out.


----------



## KAMLEM

Just be prepared that they may tell you it's benign and just remove half but as they do further testing after the surgery they can find that it's not benign. That happened to me and to a woman I work with so we had to go back in to have the rest of the thyroid removed.


----------



## Christine

KAMLEM said:


> Just be prepared that they may tell you it's benign and just remove half but as they do further testing after the surgery they can find that it's not benign. That happened to me and to a woman I work with so we had to go back in to have the rest of the thyroid removed.



That happened to me too.  When they do the frozen section pathology while you are on the operating table, they do it on what they feel is the most likely area of thyroid to have cancer.  They did the frozen section on a large piece of my 1cm nodule. It came back benign.  They sent everything down to pathology where they shave everything down and mount to slides and look at every cell.  Somewhere else within that 1cm nodule had the cancer cells as well as some microsized cells throught the gland (not within lumps).


----------



## mrsklamc

Oops, didn't know that as they took all mine right away. I just had a friend who had a partial on the 27th of december and they told her it was benign so I hope that doesn't change.


----------



## robynslp

Thanks! I am aware that they may have to go back in and take the rest. 

I'm most confused because this is nowhere near the process and procedures that my sister went through and she is convinced that I need more testing and at least a second opinion.  I don't live in a huge metro area, but I had a great rapport with the surgeon.  Endo is his sub specialty so I don't feel like he is using me to practice on or something.  

She had uptake scans and biopsies and such.


----------



## mrsklamc

There's been a lot of changes fairly recently in the field, I think- for example, I think it's standard practice to go w/ thyrogen now instead of the withdrawal I went through just a couple of years ago. I personally wouldn't want to do an uptake scan if I had it to do over again- not sure it didn't negatively impact how well my RAI worked. You've not had a fine needle biopsy though? That does seem a bit strange.


----------



## SingingMom

mrsklamc said:
			
		

> There's been a lot of changes fairly recently in the field, I think- for example, I think it's standard practice to go w/ thyrogen now instead of the withdrawal I went through just a couple of years ago. I personally wouldn't want to do an uptake scan if I had it to do over again- not sure it didn't negatively impact how well my RAI worked. You've not had a fine needle biopsy though? That does seem a bit strange.



I believe you are right on the changes. 20 years ago, the withdrawal for the uptake scan was worse than the biopsy and total thyroidectomy!   I am glad that has changed !

Sent from my iPad using DISBoards


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## mrsklamc

SingingMom said:


> I believe you are right on the changes. 20 years ago, the withdrawal for the uptake scan was worse than the biopsy and total thyroidectomy!   I am glad that has changed !
> 
> Sent from my iPad using DISBoards



oh wait- I misunderstood uptake scan. Yes, the withdrawal for that was by far the worst. What I was thinking I would not do if I had the chance to go back and do it again was a iodine contrast scan, I guess...or something like that? Not the RAI, but I think they injected iodine and did a cat scan or something like that...prior to knowing I had cancer for sure. I'm not sure why they did that instead of going straight to the biopsy.


----------



## Christine

When it was discovered I had one nodule, I had an I-123 uptake scan.  There was no prep for it and it was quite easy.  All I had to do was swallow a capsule and then I had to have some pictures taken of my thyroid with some strange little camera that kind of looked like a telescope.  Basically what that does is tell you if the nodule is functioning or not.  My nodule proved to be "cold" which is more indicative of cancer.  It's better to have a hot or warm nodule. I don't think they do these anymore because the outcome does not matter.


----------



## mrsklamc

I had some kind of iodine test prior to my fine needle biopsy, it didn't involve radioactive iodine but injected iodine. Now that I know more I don't know what the point was.


----------



## luvmarypoppins

Hope everyone is doing ok.

Need to schedule my sono and blood work soon. I think my endo visit is Feb. 4th or so and she liked the stuff done at least a week before etc.

I follow an author Kathleen Fuller and she just got a clean scan so she is happy!

I wonder if Brooke Burke had rai?

Christine - I have just started reading more too. I only read the stuff I win from contests. I have quite a few I need to read. I just finished 2 amish fiction books.

Jenn - did you move to your new house yet?

Thinking of you all. Blessings always.


----------



## MariDisney

This thread showed up on my user panel as having new posts so I thought I'd pop in here and say hi.  I'm 3 years out from my near total thyroid removal and ultimate cancer diagnosis.  I seem to be well maintained on 150 mg of synthroid as that's been my dose since about 9 months after the surgery. I had an ultrasound last August that came back clear and all my bloodwork looked good.  I still wonder whether having RAI would put my mind at ease as I do worry about cancer returning.  I didn't have it 3 years ago because we were undergoing fertility treatments.  Any thoughts on that?  I don't see my Endo until August unless I have an issue.  I wonder if there's any sense in just asking for the RAI.


----------



## mrsklamc

Mari- I would at least talk to your doctor about it. 

LMP- good here. Seeing a different reproductive endo Weds, and I like this office better already. How are you?


----------



## KAMLEM

MariDisney said:


> I still wonder whether having RAI would put my mind at ease as I do worry about cancer returning. I didn't have it 3 years ago because we were undergoing fertility treatments. Any thoughts on that? I don't see my Endo until August unless I have an issue. I wonder if there's any sense in just asking for the RAI.


I didn't have RAI either. My doctor said that what they found was so small and early and it's really a balancing act. She didn't want to put me through the RAI and possible side effects if it might not really be necessary, and like she said it can always be done later. I had a radical neck dissection last year that I may not have needed if I had the RAI but everything came back clean so I feel pretty good. I just think you have to monitor everything really closely.


----------



## Christine

Mari--I think the decision (for me) would depend a lot on your initial pathology.

Was your original tumor under 1 cm?

Were the cancerous cells limited to being within the tumor or did you have multifocal involvement?

Was the cancer well-differentiated or less differientiated?

If the answers are:  Yes, limited to the tumor, and well-differentiated then ultrasounds and blood tests are probably fine.


----------



## MariDisney

Christine said:


> Mari--I think the decision (for me) would depend a lot on your initial pathology.
> 
> Was your original tumor under 1 cm?
> 
> Were the cancerous cells limited to being within the tumor or did you have multifocal involvement?
> 
> Was the cancer well-differentiated or less differientiated?
> 
> If the answers are:  Yes, limited to the tumor, and well-differentiated then ultrasounds and blood tests are probably fine.



Good questions.  It amazing what I have forgotten in the past 3 years.  Had to go look at a previous post.  LOL  The main tumor was only 3.5 mm and I remember language like "many multifocal something or other" and I also remember saying none were within a certain distance from the edge of the thyroid.  I don't remember on the differentiated part.  I have moved since then and the actual report is packed away somewhere.


----------



## Christine

MariDisney said:


> Good questions.  It amazing what I have forgotten in the past 3 years.  Had to go look at a previous post.  LOL  The main tumor was only 3.5 mm and I remember language like "many multifocal something or other" and I also remember saying none were within a certain distance from the edge of the thyroid.  I don't remember on the differentiated part.  I have moved since then and the actual report is packed away somewhere.



3.5mm is pretty small so that's good; however, if you find that you had "multifocal" cancer that occurred outside of the 3.5mm tumor (this is what I had) then you would want to follow up with RAI.  Multifocal cancer means that, while you didn't have more tumors, you had small, cancerous cells in various places in the thyroid gland.  As you know, no matter how thorough the surgery, they cannot operate on the cellular level and a surgeon can't help but leave something behind.  The hope is that whatever the surgeon did leave behind, didn't have anything "bad" in it.  It only takes one cancerous cell to start the cycle over again.  If your cancer shows a pattern of multifocality then there's a good chance that there's a rogue cell in what's left.  RAI takes care of that.


----------



## MariDisney

Christine said:


> 3.5mm is pretty small so that's good; however, if you find that you had "multifocal" cancer that occurred outside of the 3.5mm tumor (this is what I had) then you would want to follow up with RAI.  Multifocal cancer means that, while you didn't have more tumors, you had small, cancerous cells in various places in the thyroid gland.  As you know, no matter how thorough the surgery, they cannot operate on the cellular level and a surgeon can't help but leave something behind.  The hope is that whatever the surgeon did leave behind, didn't have anything "bad" in it.  It only takes one cancerous cell to start the cycle over again.  If your cancer shows a pattern of multifocality then there's a good chance that there's a rogue cell in what's left.  RAI takes care of that.



Thanks, Christine.  That's exactly what I had...cancer cells outside of the main tumor.  They were also 2-3 other tumors that measured less than 3 mm.  Because of the fertility treatments and my age (40) at the time, the endo and my reproductive endo felt fine not doing RAI then, but I'm definitely going to have a conversation about it at my next appointment.


----------



## branv

Hi everyone, new here and looking for support and/or information.  I posted this on the CB a bit ago, but stumbled across this thread during a search.  I hope you don't mind my long post.

Sitting here counting the days (okay, minutes) until my results from an FNA performed 7 days ago.  I won't get the results until this Friday (so 10 days total) because my @#$@ ENT doctor said something vaguely about how she doesn't call with results b/c she likes to "look people in the eye" while she tells them their results.  Frankly, I am certifiable at this point.

My story.  Again, this is really, really long, but I am a full-disclosure kind of person in hopes that it gives an accurate picture.  Sorry for the novel:

My mother had Graves disease 20 years ago: thyroid nuked, done well on meds since.  My older sister has Hypo with Hashimotos: bad off, numbers in constant flux. Had nodules, with benign FNA years ago. Claims they swell now and again when meds off, but her doc hasn't given her an US since.  In 2001, at 28, I was diagnosed with mild hypo and my endo found 2 small nodules.  She biopsied them and they came out benign.  My hypo, honestly, didn't give me much in the way of obvious symptoms. I just took my pills, and that was it.  

I moved to a new city the next year, and just found a GP in our new city (I'd HATED my endo).  I told her about the nodules, etc, but we could never get my endo to send over my records.  In 2006, my GP had me do a thyroid sonogram just to get some idea of what was there.  I never really heard anything about that sonogram after that.  During this time and since then, occasionally out of the blue I'll get those sudden heart pounding episodes for no reason.  Numbers still looked good, no other symptoms, so ???.

In 2008, I started trying to eat better and dropped 20 pounds.  I was still quite overweight despite the loss, just fyi.  Suddenly, after the loss, my numbers swung closer to hyper.  My doctor tried dropping the med dosage, then had me stop taking it all together.  Since then, my thyroid tests have been normal without the meds.  We assumed it was due to the weight loss, but my subsequent regaining of the weight (sigh) didn't effect anything. My latest test showed:

TSH: 2.9
T4: 10 (not sure why I don't have T3 in my records)

In December, (I'm now 39) I went in for a lump on my leg I thought was an ingrown hair.  My doc thought it was basal cell carcinoma.  This made her think about my thyroid nodules again, so she referred me to both a dermatologist and for an updated sonogram (again, last was 2006).  The lump came out no cancer, thought some mildly atypical cells (yay...sort of), but the sonogram showed changes to my thyroid. I was referred me to an ENT for an FNA.  At the ENT, I learned the following:

Original nodule: grown from .8 cm to 1.6 cm
New nodule: not present in 2006 sonogram, now 2.0 cm
Second new nodule: size of lentil, considered inconsequential

When I mentioned that my original Endo had told me I had two nodules in 2001, the ENT said that my scan in 2006 only showed the one.  Huh??  I honestly have no idea what the size of those nodules were in 2001, sadly.  She told me the good statistics, which I'd already known (or thought I knew) through reading.  And given those stats, plus my last nodule being benign, I felt pretty confident.  I mean, even if it's thyroid cancer, I learned it's "an easy fix" and  CURED!  My dad had survived lung cancer, so in comparison that sounded like a walk in the park.  

God, what a fool I am.

So I went for the FNA, and for some reason the orders only stated to have one nodule biopsied.  I spoke up and said they were concerned about two.  The technician said the radiologist had only ordered one, but when he came in she told him what I said.  Thank goodness!  He had her do a quick scan, and said, "yeah, we definitely want to do both of those." There go my nerves.  During the scan, this is what I heard the tech say to the radiologist: "the front one is really well defined, but that larger one [the newer one] looks really irregular" and "well, it's definitely got blood flow".

I got home and started doing research on what was said.  Immediately I saw that poorly defined borders and blood flow are good indications of malignancy.  Still, I thought, "okay, you can deal with this.  Everything you read said most thyroid cancer is very very curable and simple."

Except, of course, now I know it's not.  And this thing might have been in me for 5 years now.

Now that I've looked past the dry medical websites into real studies and people's experiences, I'm so scared.  I've read how common it is that even the most curable one, papillary, ends up being in the neck lymph nodes. And how debilitating the resulting neck dissection surgery can be.  I read that up to 30% of papillary cancer reoccurs, and often years later.  I also read that under age 45 (some reports say 40), your chances are great, but over 45 it drops a lot.  I'm 40 in June.  And that's just papillary, the supposed "good one" to get.  Of course, there's all the pain of going hypo I've read.  I've learned quickly that this is not the easy process doctors try to say it is.

Also, I'm 7 weeks pregnant.  In October I was diagnosed with a missed miscarriage at 8 weeks for what would have been my first child after over a year of TTC.  I found out about the pregnancy right before I found about the nodules.  I also found out at 4 weeks that my progesterone is low: they want 15-20 at that time, mine was 13.5.  This is not good.  Add in only mild pregnancy symptoms so far, and there just isn't much hope for this pregnancy.  I go in for my first ultrasound a week after I see the ENT for my results.

I'm just a mess.  Add in hormones, and I'm a weeping mess.  Do I have cancer, will the baby survive?  If I have cancer, and the baby survives, I will have to put off RAI until after the birth and that means no breastfeeding, no holding my own child for too long.  If I have cancer and the baby doesn't survive, the RAI pretty much takes my already low chance of conceiving (at my age) and destroys it.  

I know these are things I shouldn't be thinking about.  I know I don't even have information yet.  So what's the use in driving myself insane? But it just feels like bad news is on the way.  There's just been so much of it lately.  And ten days is a long, long time to keep the brain from taking over and overheating.

Again, so sorry for the War & Peace length post.  I just need to talk to real people.  As wonderful as DH has been, I feel very alone in this "waiting it out" void.


----------



## mrsklamc

Ok, I haven't read your entire post yet but my first thought is 'get a new ENT." If they think making you wait 10 days is appropriate because of their own personality quirks, they obviously have no idea what it's like to be in the patient's shoes. Going back to read the rest...


----------



## mrsklamc

Ok you have a lot of info there and I can't respond line by line right now but a couple of things jump out at me: 1) The reason survival rates go down so much after 45 is that that is when people tend to get the more aggressive kind, and if you had that, you would probably be dead already, so don't worry.

2)It seems many doctors are doing away with having people go hypo and using thyrogen, so don't stress about that until you get there.


----------



## mrsklamc

Oh, and mine was in my lymph nodes, and I had a radical neck dissection, and it wasn't too bad actually. Nothing compared to going hypo. The thing to do is just make sure you have an _EXCELLENT_ ENT, one who does this a lot w/o damaging parathyroids.


----------



## luvmarypoppins

branv -  you sure do have a lot on your plate right now. I am sure the waiting is too much right now.

I wouldnt read too much stuff online, although I am guilty of that myself. 

Sometimes even if you have the fna it might be inconclusive too.

But make sure you are comfortable with your endo and the surgeon you choose if need be.

I would much rather have heard the news in person. Actually I heard from another doctor on the phone. Yup, she just called up and told me I had cancer. So I dont know if there is really any way that is good to hear results. Everyone reacts differently.

I think 10 days is kind of too long too. I think 7 should be about it. Did they send it out or do something in house or closer etc.

My lst fna was sent outside. It took forever and was inconclusive. The 2nd and 3rd ones they did in house since I went to a univ. teaching hosp. They used their own pathology lab. 

Hoping this turns out to be nothing for you and you can get on with your life.

If its something, then you deal with it day by day. I didnt get dx till I was 50 and I am working on year 4 next week and I also have a rare and aggressive kind and had the neck dissection like Mikayla. 

Wishing you all the best. Blessings to you.

Wishing you all the best.

I used to live in TX too. (Dallas County). If its something I would really get a 2nd opinion at MD Anderson. They are the best. I didnt have my cancer till I moved here to NY though.


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## branv

Thanks everyone for your help.  Though I admit I tend to hate to "rock the boat" I was inspired by your comments that 10 days was too long.  So I called the doctors office to ask if my results were in.  Two hours later, they hadn't called back, so I did.  The nurse came back on the line and said the results were inconclusive.  She also said she thought she heard that the pathologist had asked permission to run an additional test on the samples.  Also, she stated that the doctor wanted to see me Thursday instead of Friday since they'd had some openings come available.  

My head is reeling.  I can't believe we're dealing with more waiting.

I don't know what this means.  I thought I read that inconclusive typically does come out cancerous.  And I know this means either another FNA or a thyroidectomy to test tissue.  What could "additional tests" mean?

I knew this was a possibility, but I'm still surprised.  I went to a hospital (Seton) to have a radiologist do a sonogram-guided FNA.  They had a pathologist test the samples during my FNA to make sure they had gotten what they needed. The pathologist was with, I think, Clinical Pathology Labs.

I had just assumed that the use of the pathology testing during the FNA would make it more likely to get a conclusive result.

I just want this over with so I can make a plan one way or the other.


----------



## mrsklamc

DH's co-worker _just_ had an inconclusive result while pregnant, had a partial thyroidectomy, and it wasn't cancerous.

Plus you can't count on _typically_ anything. I remember reading how it was _so_ unlikely that I actually had thyroid cancer, yet here I sit. 

Just do your best not to worry.


----------



## Christine

I want to say that you will NEVER get a true "benign" reading off of a thyroid biopsy.  You will either get malignant or inconclusive.  There are times that they will "stage" the inconclusive with whether or not the pathologist deems it suspicious.  If that is the case, they usually have you come back for more samples.

Thyroid cancer is not like other cancers.  Using breast cancer as an example:  if you have a lump in your breast--they can do a couple of biopsies in the tumor or area and get a conclusive reading:  benign or malignant.

Thyroid cancer doesn't work that way.  You could have a mass of 1 cm, for instance, and within that mass you can have tons of harmless cells but a few cancer cells.  If the needle doesn't pick it up, you get inconclusive.  I had my whole tumor removed.  A decent sized "slice" was taken out of it and looked at.  There were probably millions more cells in that slice than what ever gets pulled out on an FNA.  My results were inconclusive.  When my sample was sent off to pathology--which is a long process; takes about 5 days--that's where the cancer cells were seen.

So you can see how difficult an FNA is with thyroid cancer.  Some people get "lucky" if you can call it that and get a cancer cell in the FNA and then they just have the luck of knowing.  Most people seem to get the inconclusive results and then spend months/years rechecking and watching.


----------



## luvmarypoppins

Well remember how I said I need to schedule my sono and blood work for my endo visit.

Well I just pulled out my paperwork and I see my endo visit is on monday and I am freaking out.

Oh yes so there is no way that I can get a sono in time. I hopefully can get the blood test tomm. Plus we are suppose to be having a lot of snow on friday and and then my dh is leaving for the west coast on mon.

Well I guess I will just have to have the endo only look at the blood test which is better anyway and tell her sorry about the sono, its coming etc. 

I hope she isnt too mad at me since I hav never done this before.

And since dh got me so upset at the endo last time I guess it will be better. I will take one of the ds with me. That is bad in itself since I will be driving and my eye is not that good to see when its dark out. I am gonna see if I can mae it earlier since I want to say good bye to my dh but I doubt that will happen. 

I think by the time I get to the dr. my bp will be sky high, hmm wonder why


----------



## branv

Thank you all so much for taking the time to give me information and support.  As odd as it sounds, hearing "inconclusive" was initially hard, but I found that my anxiety decreased a lot to at least hear _something_.  Knowledge is definitely power.  And apparently the unknown is a big bag of wackaloon crazy!

I know I've always been an overly-imaginative person, but my goodness....my emotions have ranged drastically from "eh, you'll get through this" to "oh gawd, I can't BREATHE!!!!"  Sometimes from minute to minute!  We'll just pretend I can chalk this up to pregnancy hormones.  In fact, if it weren't for this baby, I'd have had one seriously gigantic glass of red wine by now.  It's probably the only reason DH hasn't secretly dissolved one of my (leftover from surgery) pain pills into my coffee just to chill me out.  Sheesh, you'd think at 39 I'd have better coping mechanisms by now.   Would someone please tell me when all that supposed wisdom is supposed to kick in?


----------



## Christine

branv said:


> Thank you all so much for taking the time to give me information and support.  As odd as it sounds, hearing "inconclusive" was initially hard, but I found that my anxiety decreased a lot to at least hear _something_.  Knowledge is definitely power.  And apparently the unknown is a big bag of wackaloon crazy!
> 
> I know I've always been an overly-imaginative person, but my goodness....my emotions have ranged drastically from "eh, you'll get through this" to "oh gawd, I can't BREATHE!!!!"  Sometimes from minute to minute!  We'll just pretend I can chalk this up to pregnancy hormones.  In fact, if it weren't for this baby, I'd have had one seriously gigantic glass of red wine by now.  It's probably the only reason DH hasn't secretly dissolved one of my (leftover from surgery) pain pills into my coffee just to chill me out.  Sheesh, you'd think at 39 I'd have better coping mechanisms by now.   Would someone please tell me when all that supposed wisdom is supposed to kick in?



The wisdom doesn't kick in until you get closer to 50 AND your oldest child has passed the teen years.  At that point, you truly feel like you have become "wise."

I will say that when I was going through this 18 years ago, I was really freaked out.  I feel for you because I think this stressful diagnosis (or non-diagnosis) is really compounded by the fact that you are pregnant, uncertain about the pregnancy, and are in the process of trying to conceive.  Really, this is the LAST thing you need.

If I were in your shoes, I would try to put this thyroid stuff OUT of your mind.  Concentrate on your pregnancy and doing what you need to do to maintain it.  Even if the thyroid cancer has been there awhile (if you even have it) you still have some time to play with.  It's not like other cancers.  Just take a breather and revisit this whole thing about 2-3 months after having a baby!


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## branv

Well, I hate to ask for help again, but was hoping some of you might be able to give me your thoughts or at least guide me to a good source.  Some of what I thought I knew wasn't entirely correct (the measurements, for one, were off), plus we've got some more "we'll see".  The biggest surprise is that it turns out that my old nodule (the one that the endo said was benign in 2001) is the questionable one.

Here was my pathology report: 

Right Thyroid Nodule: (the "new since 2006" one)
1.8 x 2.0 x 1.5 cm
The cytologic preparations are mildly cellular and show sheets and clusters of bland follicular cells, some microphages, lubricant and blood; only scant colloid is appreciated. 

Right Thyroid Nodule: (known since 2001)
1.3 x 1.4 x 1.3 cm
The cytologic preparations are moderately to abundantly cellular and show numerous sheets and clusters of Hurthle cells. Many of the clusters are crowded with nuclear enlargement and there is a subset of microfollicular arrangements.  There is a background suggestive of chronic lymphocytic thyroiditis with numerous lymphocytes and lymphoid tangles seen.  However, not much colloid is appreciated and the architectural arrangements raise the possibility of a neoplasm.  Only very rare single Hurthle cells are seen.

The minute my doctor said Hurthle cells, my heart dropped into my feet.  I'd read the stats on that one, and it scared me badly.  Though I do know Hurthle Cell carcinoma's higher mortality does coincide, in part, with people typically being much older when they are diagnosed with it.  She did explain to me that there is evidence of thyroiditis, which might account for the Hurthle cells.  But for now, my chance of this being cancer go from 10% to 30%.

The great news is that I don't have to have another FNA.  The lab which took my samples prepped 4 of the 8 samples for Afirma molecular tests in case of the dreaded "inconclusive."  So I can likely avoid both another FNA as well as an "exploratory" partial thyroidectomy.  Apparently the Afirma test is 94% accurate for diagnosing previously indeterminate nodules?  I just have to wait another two weeks.  Which is frustrating, but far better than possibly unnecessary surgery.  Hopefully I will have the results in time for my first sonogram, and I can consult with my OB at the same time.

If anyone has some insights about these results, they'd be greatly appreciative.  And again, thanks for your support.  Your kind words have honestly made me tear up a few times


----------



## Christine

branv said:


> Well, I hate to ask for help again, but was hoping some of you might be able to give me your thoughts or at least guide me to a good source.  Some of what I thought I knew wasn't entirely correct (the measurements, for one, were off), plus we've got some more "we'll see".  The biggest surprise is that it turns out that my old nodule (the one that the endo said was benign in 2001) is the questionable one.
> 
> Here was my pathology report:
> 
> Right Thyroid Nodule: (the "new since 2006" one)
> 1.8 x 2.0 x 1.5 cm
> The cytologic preparations are mildly cellular and show sheets and clusters of bland follicular cells, some microphages, lubricant and blood; only scant colloid is appreciated.
> 
> Right Thyroid Nodule: (known since 2001)
> 1.3 x 1.4 x 1.3 cm
> The cytologic preparations are moderately to abundantly cellular and show numerous sheets and clusters of Hurthle cells. Many of the clusters are crowded with nuclear enlargement and there is a subset of microfollicular arrangements.  There is a background suggestive of chronic lymphocytic thyroiditis with numerous lymphocytes and lymphoid tangles seen.  However, not much colloid is appreciated and the architectural arrangements raise the possibility of a neoplasm.  Only very rare single Hurthle cells are seen.
> 
> The minute my doctor said Hurthle cells, my heart dropped into my feet.  I'd read the stats on that one, and it scared me badly.  Though I do know Hurthle Cell carcinoma's higher mortality does coincide, in part, with people typically being much older when they are diagnosed with it.  She did explain to me that there is evidence of thyroiditis, which might account for the Hurthle cells.  But for now, my chance of this being cancer go from 10% to 30%.
> 
> The great news is that I don't have to have another FNA.  The lab which took my samples prepped 4 of the 8 samples for Afirma molecular tests in case of the dreaded "inconclusive."  So I can likely avoid both another FNA as well as an "exploratory" partial thyroidectomy.  Apparently the Afirma test is 94% accurate for diagnosing previously indeterminate nodules?  I just have to wait another two weeks.  Which is frustrating, but far better than possibly unnecessary surgery.  Hopefully I will have the results in time for my first sonogram, and I can consult with my OB at the same time.
> 
> If anyone has some insights about these results, they'd be greatly appreciative.  And again, thanks for your support.  Your kind words have honestly made me tear up a few times



Your pathology reads like several other "inconclusives".  A friend of mine also has Hurthle cells.  Theyy can be benign or malignant.  I think if they are malignant they are other things they can see.  

Here's a little info on them:



> Hürthle cells (HCs) and HC change, along with the frequently employed synonyms oncocytes/oncocytic change or oxyphils/oxyphilic change, are not infrequently described on fine-needle aspiration biopsy (FNAB) reports of thyroid lesions. The description of HCs on FNAB reports may cause significant concern to the clinician; however, placing the finding in the appropriate clinical context may alleviate some anxiety. Not all oxyphilic cells are true HCs and not every aspirate containing HCs is or should be considered equivalent to an HC neoplasm (HCN). There are many benign thyroid lesions associated with HCs or HC change. For clinicians, it may be difficult to discern the significance of these findings and to determine an appropriate course of action. A skilled and experienced cytopathologist is invaluable in discriminating the subtle features that distinguish these lesions from those warranting a more aggressive approach. The diagnosis of HC carcinoma relies on histopathologic scrutiny and evidence of capsular and/or vascular invasion or metastasis to lymph nodes or distant organs. Many investigators have sought clinical, radiographic, cytological, genetic, and other factors to attempt to discriminate preoperatively between benign and malignant HCNs. To date, none have been definitively proven to be reliable. For now, because of the inability to determine the benign or malignant nature of such neoplasms based on cytology alone, a surgical approach is warranted.


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## robynslp

So I'm starting to freak out about my partial thyroidectomy based on "inconclusive" results.  I don't exactly live in a medical meca.  Are there other tests that could be done?

I guess the best news I've gotten recently is that my deductible that I thought was calendar year is actually, july to july so I met it already.


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## Christine

robynslp said:


> So I'm starting to freak out about my partial thyroidectomy based on "inconclusive" results.  I don't exactly live in a medical meca.  Are there other tests that could be done?
> 
> I guess the best news I've gotten recently is that my deductible that I thought was calendar year is actually, july to july so I met it already.



I didn't think you could get an "inconclusive" on a partial thyroidectomy.  A surgery/removal such as that would be given a full pathology.


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## robynslp

I'm sorry, I wasn't clear with what I meant. I'm not liking the idea of having a partial thyroidectomy based on inconclusive FNP. I think what I really need to do is see my regular dr to understand better what is going on. I was basically told its a 15-30% chance it is cancer. 

I really really don't like the idea of surgery.


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## Christine

robynslp said:


> I'm sorry, I wasn't clear with what I meant. I'm not liking the idea of having a partial thyroidectomy based on inconclusive FNP. I think what I really need to do is see my regular dr to understand better what is going on. I was basically told its a 15-30% chance it is cancer.
> 
> I really really don't like the idea of surgery.



Yeah, the surgery ain't no picnic!!!  I would probably have several needle biopsies before I decided on surgery.  And those "inconclusive" biopsies would need to be leaning rather to the "weird" side for me to do it.  OR, I would definitely have the surgery if my thyroid gland was misbehaving.  It's actually easier to treat thyroid issues once you get rid of the gland.


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## SingingMom

Christine said:
			
		

> Yeah, the surgery ain't no picnic!!!  I would probably have several needle biopsies before I decided on surgery.  And those "inconclusive" biopsies would need to be leaning rather to the "weird" side for me to do it.  OR, I would definitely have the surgery if my thyroid gland was misbehaving.  It's actually easier to treat thyroid issues once you get rid of the gland.



I actually thought the surgery was a little better than the biopsy. Lol.  I was sleeping for the surgery.  For the biopsy, I was wide awake with the surgeon and nurse 2 cm from my face. I have this thing about PERSONAL SPACE!

Sent from my iPad using DISBoards


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## branv

robynslp said:


> I'm sorry, I wasn't clear with what I meant. I'm not liking the idea of having a partial thyroidectomy based on inconclusive FNP. I think what I really need to do is see my regular dr to understand better what is going on. I was basically told its a 15-30% chance it is cancer.
> 
> I really really don't like the idea of surgery.



I know I'm super super new to this, but this is just like my situation.  In cases like mine, almost always when they got an inconclusive FNB they automatically went to surgery for diagnostic purposes.  But what I'd read about, and luckily my doctor/lab already knew about, was a relatively new test called the Veracyte Afirma gene expression test.  It takes inconclusive/suspicious tests and runs molecular/gene testing on them which is far more accurate than an FNA.  Johns Hopkins stated that use of this test could end up reducing unnecessary thyroidectomies by 74%.

The test is very expensive, like $3500, but apparently many insurances are coming around to covering and I _think_ I read that they may be able to work with you to get it for much less than that if your insurance will not cover it.  But I'm not entirely clear about that.  The cost sure beats the many many thousand dollars a thyroidectomy would cost.  If your doctor hasn't heard of it, and dismisses it, consider calling around to other doctors or calling Veracyte directly to get a recommendation for one familiar with the test.

If your labs weren't prepped for it when they were taken at your last FNA, the bad news is that you will need another FNA as it requires special handling.  But at least you know you have options.

Here's more info: http://thyroid.about.com/od/cancergoiternodules/a/veracyte-afirma-thyroid-analysis-nodules_3.htm

Best of luck to you.


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## Christine

SingingMom said:


> I actually thought the surgery was a little better than the biopsy. Lol.  I was sleeping for the surgery.  For the biopsy, I was wide awake with the surgeon and nurse 2 cm from my face. I have this thing about PERSONAL SPACE!
> 
> Sent from my iPad using DISBoards



I was mainly thinking about the recovery from the surgery.  It wasn't the worst thing in the world but it wasn't like having a mole removed either!


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## SingingMom

Christine said:
			
		

> I was mainly thinking about the recovery from the surgery.  It wasn't the worst thing in the world but it wasn't like having a mole removed either!



Oh I know. I was making a feeble attempt at humor. ;-)

I had a total thyroidectomy for papillary carcinoma with spreading to a few lymph nodes, after originally having Graves' disease, then contracting hepatitis from an allergic reaction to the PTU.  And yet, the main thing I still really cringe at was the biopsy and everyone so up close in my face. I must be claustrophobic. When I had my daughter I had a panic attack as they were closing me up from the c-section because the drape was up to my face.  I am a nervous patient when "aware" of my surroundings.

Sent from my iPad using DISBoards


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## Christine

SingingMom said:


> Oh I know. I was making a feeble attempt at humor. ;-)
> 
> I had a total thyroidectomy for papillary carcinoma with spreading to a few lymph nodes, after originally having Graves' disease, then contracting hepatitis from an allergic reaction to the PTU.  And yet, the main thing I still really cringe at was the biopsy and everyone so up close in my face. I must be claustrophobic. When I had my daughter I had a panic attack as they were closing me up from the c-section because the drape was up to my face.  I am a nervous patient when "aware" of my surroundings.
> 
> Sent from my iPad using DISBoards



Oh, yeah, I'd say you have a little problem!!!

I don't necessarily have that sort of issue but in some ways I do.  It's why I hate the dentist so much.  I hate that the dental hygenist is so close to me and I don't like all that prolonged attention to my mouth!!

I never did have a FNA in the neck so I don't know how I would have dealt with that.  I've only had breast biopsies and, fortunately, they are not in your face for them.


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## SingingMom

Christine said:
			
		

> Oh, yeah, I'd say you have a little problem!!!
> 
> I don't necessarily have that sort of issue but in some ways I do.  It's why I hate the dentist so much.  I hate that the dental hygenist is so close to me and I don't like all that prolonged attention to my mouth!!
> 
> I never did have a FNA in the neck so I don't know how I would have dealt with that.  I've only had breast biopsies and, fortunately, they are not in your face for them.



Yes, I am the same with the dentist. Luckily the one hygienist has me down on my chart as a nut. Lol
Been there, done that with the breast, too.   I can deal with that ok. Just want it over with. But that "in your face" thing just makes me crazy!

Sent from my iPad using DISBoards


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## branv

I know this is completely O/T, but since you all have been so kind about my situation, I wanted to again thank you and tell you some good news.  Not about the thyroid, too early yet, but about the pregnancy.

After I updated my OB with the info about my thyroid, they were able to get me in to have my first sonogram 9 days earlier than originally planned.  I knew this was going to a nervewracking day for us b/c the last miscarriage was discovered at our first sonogram when they just couldn't find a heartbeat.

Well, we got a heartbeat!  A REALLY strong heartbeat!  Baby is measuring exactly on time, and he/she was even moving a little bit.  Because of my position, I didn't see the flickering of the heart at first and my heart sunk.  But DH saw it right away, and started crying before even I did!  Which startled me because I didn't know why he was crying!  

The only teeny-tiny weirdness is that the due date is 9/11. Oooph.  I think I will be lying about that one when we tell people.  We aren't going to tell anyone until after we have all the testing done, which will be right as we enter the 2nd trimester.  So for now, it's me, DH, one friend, and all you peeps on the DIS!

I thought this would scare me -- the idea of being pregnant and potentially having cancer.  But, at least for today, I feel stronger.  Like I have hope and more fight in me than before.

Thank you again for everything.


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## SingingMom

branv said:
			
		

> I know this is completely O/T, but since you all have been so kind about my situation, I wanted to again thank you and tell you some good news.  Not about the thyroid, too early yet, but about the pregnancy.
> 
> After I updated my OB with the info about my thyroid, they were able to get me in to have my first sonogram 9 days earlier than originally planned.  I knew this was going to a nervewracking day for us b/c the last miscarriage was discovered at our first sonogram when they just couldn't find a heartbeat.
> 
> Well, we got a heartbeat!  A REALLY strong heartbeat!  Baby is measuring exactly on time, and he/she was even moving a little bit.  Because of my position, I didn't see the flickering of the heart at first and my heart sunk.  But DH saw it right away, and started crying before even I did!  Which startled me because I didn't know why he was crying!
> 
> The only teeny-tiny weirdness is that the due date is 9/11. Oooph.  I think I will be lying about that one when we tell people.  We aren't going to tell anyone until after we have all the testing done, which will be right as we enter the 2nd trimester.  So for now, it's me, DH, one friend, and all you peeps on the DIS!
> 
> I thought this would scare me -- the idea of being pregnant and potentially having cancer.  But, at least for today, I feel stronger.  Like I have hope and more fight in me than before.
> 
> Thank you again for everything.



Congrats and God bless,

Sent from my iPad using DISBoards


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## Christine

branv said:


> I know this is completely O/T, but since you all have been so kind about my situation, I wanted to again thank you and tell you some good news.  Not about the thyroid, too early yet, but about the pregnancy.
> 
> After I updated my OB with the info about my thyroid, they were able to get me in to have my first sonogram 9 days earlier than originally planned.  I knew this was going to a nervewracking day for us b/c the last miscarriage was discovered at our first sonogram when they just couldn't find a heartbeat.
> 
> Well, we got a heartbeat!  A REALLY strong heartbeat!  Baby is measuring exactly on time, and he/she was even moving a little bit.  Because of my position, I didn't see the flickering of the heart at first and my heart sunk.  But DH saw it right away, and started crying before even I did!  Which startled me because I didn't know why he was crying!
> 
> The only teeny-tiny weirdness is that the due date is 9/11. Oooph.  I think I will be lying about that one when we tell people.  We aren't going to tell anyone until after we have all the testing done, which will be right as we enter the 2nd trimester.  So for now, it's me, DH, one friend, and all you peeps on the DIS!
> 
> I thought this would scare me -- the idea of being pregnant and potentially having cancer.  But, at least for today, I feel stronger.  Like I have hope and more fight in me than before.
> 
> Thank you again for everything.



That's great news and I'm so happy for you!!!!  Enjoy this and don't even think about the thyroid stuff.  Statistically, the odds are in your favor.


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## luvmarypoppins

branv - congrats and just focus on that baby. Dont worry about the what ifs right now.

And my thoghts on the fna conversation
I can understand about all the fnas and in your face kind of stuff. Honestly none of that really bothered me. My surgeon is really tiny and short so it was rarely that he was in my face, more like he had to put on stilts to find me, well not really, lol.

The worst was the core biopsy I had. That was beyond nerve racking and scary. I think dh said he wanted to throw up. Its like a caulk gun getting put into your neck sideways, not straight on. I was told not to look, turn, move etc. And worse, he said, I am making another pass on you (attempt) because I didnt like how the first one went, oh gheesh thanks!

Well my endo does her own fna they say, but honestly I would rather go to the ent surgeon if I need another one. I think he just has so much more experience etc.


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## luvmarypoppins

Well this deserves its own post so gather round ladies because you all welcome to a piece of  because we are having a party today!!

Today is my 4 year cancerversary!! God is so good. Cant believe 4 years ago I almost was not blessed to be here anymore and wonderful dh holding my hand in the coma (too bad he is in california and seattle all this week). I am blessed beyond measure for sure!

And yest I went to the endo. Ds21 took me. Good nursing school experience for him. Endo said my numbers are great. Hmm, she gave me the blood report and they only listed one test and the others are pending. its less than .2 measurable so a 0. She still wants me to get the reclast infusion and the sono, She gave me the name of another internist to check out.  I go again in august since she always go to greece in july. Even ds told me what a nice dr. she was!

Thanks for always listening to me and being encouraging.

Mickayla - tomm you go to the new repro endo? Wishing you all the best.


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## branv

Congratulations!  And here's to many many many years of good health to come.


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## MadMim

Hello!  Im just dropping in to say, "hi."  Im 2 months post-thyroidectomy (cancer), and thrilled to find so many others.  Thrilled is probably not the best word, but Im still really happy to find this group.  Looking forward to learning & growing with you.


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## mrsklamc

luvmarypoppins said:


> Well this deserves its own post so gather round ladies because you all welcome to a piece of  because we are having a party today!!
> 
> Today is my 4 year cancerversary!! God is so good. Cant believe 4 years ago I almost was not blessed to be here anymore and wonderful dh holding my hand in the coma (too bad he is in california and seattle all this week). I am blessed beyond measure for sure!
> 
> And yest I went to the endo. Ds21 took me. Good nursing school experience for him. Endo said my numbers are great. Hmm, she gave me the blood report and they only listed one test and the others are pending. its less than .2 measurable so a 0. She still wants me to get the reclast infusion and the sono, She gave me the name of another internist to check out.  I go again in august since she always go to greece in july. Even ds told me what a nice dr. she was!
> 
> Thanks for always listening to me and being encouraging.
> 
> Mickayla - tomm you go to the new repro endo? Wishing you all the best.



Congratulations! Missed this earlier. Sometimes I get updates from this thread and sometimes I don't. ..

Anyway, we did see a new Dr. and we like him a lot!


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## mrsklamc

MadMim said:


> Hello!  Im just dropping in to say, "hi."  Im 2 months post-thyroidectomy (cancer), and thrilled to find so many others.  Thrilled is probably not the best word, but Im still really happy to find this group.  Looking forward to learning & growing with you.



Welcome!


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## luvmarypoppins

MadMim - welcome. Guess you can share with us when/if you feel ready. Of course I always like to hear everyones stories. Always looking for people with the rare variants like me.

Did you have rai? etc. etc. , tumor size,type etc. 

Its hard getting adjusted to the new you at first with the synthroid, post op surgery etc. 

Micayla - glad you like the new repro endo. Its so important when you have to work with someone and be on the same page etc.

Christine - yeah for your ds being accepted to the 2 colleges! Just did that last year with ds and nursing school. I am trying to do more reading this year too!


----------



## Christine

luvmarypoppins said:


> Christine - yeah for your ds being accepted to the 2 colleges! Just did that last year with ds and nursing school. I am trying to do more reading this year too!



Thanks!  I saw you joined the 2013 Book Challenge. I'm signed up for 24 books this year.  I feel like that's such a small amount but I should be able to do two a month.  I used to read so much more, not sure what happened to me?

Do you have a Kindle or Nook?  I saw that you only read books that you win.  Right now I have had four Kindle books that I had on hold at the libary come in.  It's great getting them all without paying for them!  Not sure how I will read them all during the 21 day lending period.  Maybe I should stay off the DIS!!!


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## MadMim

Hello again.  There was nothing rare or spectacular about my cancer.  Im actually struggling with a lot of guilt because the whole process was so easy for me.  I had a tiny nodule that calcified, biopsy showed papillary cancer, I had the thyroidectomy within a month.  There was a second, undetected patch on the other lobe, and I did turn out to have minor thyroiditis & goiter - I had shown symptoms but labs never confirmed.  According to my surgeon, my labs all came back "normal" under my first dose of Synthroid, but to supress it he upped my dose twice a week.  I think I had some minor hypo symptoms for a bit, but nothing to write home about.  I feel good.  In some ways I wish it were more interesting, but mostly Im happy that it isnt.  I will not have to go through RAI, and for that Im very grateful.  The docs told me to seek out joy, so I bought a season pass to Disneyland.


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## luvmarypoppins

Well I am finally going to be getting my reclast infusion on the 22nd. I picked friday because if I get the high fever again,  at least dh wont have to take off from work to take care of me. I hope I dont get those symptoms and the delusions again and the bone pain. The dr. said I shouldnt, so she better be right.

Christine - I wish I had a kindle. I asked for one the other christmas. I guess I should go and get myself one, but I do enjoy reading real books, I guess I am still old school. I am getting amish fictioned out of it. I know C. Ann doesnt post much anymore, but she would appreciate the books I am reading! And I just won 2 more books so they are gong into the to be read pile.


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## branv

GAH.  Why are doctor's offices SO...just...GAHHH!

So my two week time-frame for results on the Afirma test were up.  Having heard nothing, I called yesterday to see if they were in.  Receptionist says they're in but doctor hasn't looked at them yet.  Someone will call me back.  About four hours later, I get a call and it's the PA (I'm thinking, "YES!  It must be good news or the doctor would be the one calling).  Here's how it goes:

PA: "Wanted to tell you the good news: it's benign!"

ME: "Really?  For both?"

PA: "Ummmm...hold on, I'm not familiar with this new test.  Okay, this says one on the right."

Me: "I had two on the right, a larger and a smaller one"

PA: "This says 1.7 cm"

Me: "Okay, well that wasn't the one they were concerned about.  They sent that one in too just to be safe, but the one that was suspicious was the 1.3 cm one."

PA: "Ummmm.  Hmmmmm.  Ummmmm.  I don't know, I don't see... I'll have to have the doctor look at this.  She's in surgery right now. But I don't see anything for a second 1.3 cm, maybe they haven't sent it yet.  Someone will call you back."

Urghhhh.  Well, good thing I asked! Sheesh!

Get a call today, see it's from them and my heart is in my chest.  It's just the admin confirming my follow-up appointment for tomorrow.  Another phone call an hour later, again, heart in chest.  It's the admin again, wanting to know if they can move me to 10 am b/c they had a cancellation. I say, "That's fine, but last I heard they weren't even sure they had my test results in yet.  Should I keep this or reschedule?"  She goes to consult with the nurses, comes back and says, "No, she says you should definitely keep your appointment."

Okay.  Not like a statement like that doesn't set off bells.

I know it's stupid to read things in b/c you'll just drive yourself crazy.  And despite my initial panic early in this process, I have been amazingly calm about this lately.  Very zen, comparatively.

But are they trying to test me?!?!  I'm just human for pete's sake!  I know they don't mean to be this way, but c'MON people, how about NOT making it harder?

End of rant


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## SingingMom

Rant all you want!  You are entitled to. Geesh!  I hope the appointment is stress free and all good news.  Hang in there!

Sent from my iPad using DISBoards


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## luvmarypoppins

branv - I am sure this is so stressful to you and you have enough on your plate right now.

I know they want to be very careful with tests and results.

I actually had about 7 diagnosis before they finally got it right and figured out what kind of cancer I had. I think I went around with pap,pap, medullary, mem syndrome, lymphoma, pap and then pap with the rare columnar cell variant. Something like that I cant remember it all exactly. It was really stressful too.

Would it help if you brought someone with you tomm for moral support?

Wishing you all the best and keep us updated when you can. Hang in there sweetie


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## branv

Thanks everyone!  It's much appreciated  My goodness luvmarypoppins, however did you not want to strangle someone?  I'm sorry you went through that, but at least glad they could finally reach a conclusion so they knew how best to approach a cure for you. 

On my end, the drama continues.  It's actually so silly I'm tempted to laugh.

I got to the appointment today and they still had not received the info on the suspicious nodule.  So they called the Veracyte lab.  That lab could see that two nodules were a concern, but they'd only received the sample for the nonsuspicious one.  So my doctor called the hospital pathology lab that was supposed to send it.  All they know right now is that it was not sent.  The hospital can see it was prepped by pathology for the Veracyte test, but right now they're having to investigate where the heck that sample IS.  

If they find it, they'll send it, and I have to wait another two weeks.

If they can't find it, I have to have another FNA.

My spirits have been surprisingly high.  Which sounds weird, given the circumstances.  But I was really nervous this morning, bracing for bad news.  So oddly, hearing that they didn't have bad news...just NO news, was kind of a "okay, well I can chill for a while" 

Sheesh.


----------



## lupitail

Wow I never thought I would be taking thyroid on the DIS boards but so glad I found all of you!!

Diagnosed in April 2011 with Papillary. Had an orange sized tumor removed along with 94 lymph nodes. RAI in July of 2011 and another surgery in Oct of 2012 to remove Grape sized malignant lymph node sitting on my vocal chords. Had another ultra sound in Jan and it came back clean!!! Phew


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## Christine

lupitail said:


> Wow I never thought I would be taking thyroid on the DIS boards but so glad I found all of you!!
> 
> Diagnosed in April 2011 with Papillary. Had an orange sized tumor removed along with 94 lymph nodes. RAI in July of 2011 and another surgery in Oct of 2012 to remove Grape sized malignant lymph node sitting on my vocal chords. Had another ultra sound in Jan and it came back clean!!! Phew



Wow, orange-sized?  I have run into a few people that had large tumors with their thyroid cancer (predominantly men).  Were you conscious of that tumor in your neck?  The ones I've talked to had no idea but I wonder how you can't feel that, unless it's not really growing in the size of a ball but is more elongated.


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## luvmarypoppins

branv - I too hope your appt. went well. You need and deserve answers. Totally stinks that you have to advocate for yourself so much with all you have on your plate. Wishing you all the best

Micayla - thinking of you too with the journey. I am sure you have lots on your plate too with all that involves. As I said before, I know what my cousin went through. 

lupitail - welcome. Wow, those were some tumors. I had 2 too. My one was the biggest the dr. ever had I think he said. How big were each of them since you just describe it in terms of fruit, sorry I always think metrically and medically.

How much rai did you have. Just curious. I am the one always asking lots of questions here. Do you just have regular pap? Also just wondering what your daily snythroid dose is? Do you take the name brand or generic?

Wow that is a lot of lymph nodes for sure. I think I had almost 50 out. What was your malignant count? Mine was not too bad considering they said.

So what quadrants did they take the lymph nodes out of. I only had to have one quadrant done and that was by my littlest tumor but that little tumor almost killed me and now I cant really use my L arm good as he had to cut the nerve to get the tumor out etc. 

Wising you all the best. I love to hear everyones survivor stories and details because I think it encourages and blesses us all here.

Share when you can and wishing you all the best.

I am chatty today, hmm guess that is because of Nemo and we are buried here with over 2 feet of snow. 

Did I share before about how a little girl I taught at our churchs bible school had a brain tumor? Well sadly they just got the results back and its cancerous. She is only 13. Its near her pituitary gland and optic nerve. Now they say her parents are having to make some difficult decisions. Worse, I sure hope that girl does not have my radiation oncologist because she has no way with kids. I saw how she acted with 2 when I was there. Just so business and barely any compassion. Worse, the whole head of the rad. onc. dept. is no prize either. Just so business like etc. I am not liking the c word for sure today. My heart is breaking for this family.

Christine - good excuse for me to read later. I am reading The Lesson by Suzanne Woods Fisher.


----------



## Christine

luvmarypoppins said:


> Did I share before about how a little girl I taught at our churchs bible school had a brain tumor? Well sadly they just got the results back and its cancerous. She is only 13. Its near her pituitary gland and optic nerve. Now they say her parents are having to make some difficult decisions. Worse, I sure hope that girl does not have my radiation oncologist because she has no way with kids. I saw how she acted with 2 when I was there. Just so business and barely any compassion. Worse, the whole head of the rad. onc. dept. is no prize either. Just so business like etc. I am not liking the c word for sure today. My heart is breaking for this family.



So sad...  For some reason, when teens get cancer it hits me the hardest.  I don't know why.  I think for a lot of people, the little kids seem the worst to them but, for me, the teens just upset me so bad.

Last year, one of my son's classmates passed away from leukemia shortly before her 16th birthday.  It was heartbreaking.  She had gone to the same school as my son did since elementary school and the illness was so quick and sudden and brutal, it still tortures me to this day.

I think the "teen" thing bothers me so much because, at that age, they really do have their whole loves in front of them and they are just coming into the realization of what's out there for them and all that they can be.  They start falling in love/having crushes, getting their first taste of independence, and experiencing all sorts of "semi-adult" joys and to just have that ripped away from them is sad.  And because they are older and wiser, they know exactly what is happening to them.  At least with a small child you can shield them from some of the fear.  You just can't do that with a teenager.  

So, yeah, your story makes me sad.  I feel so bad for the girl and her parents.  It is something I would never want to go through.

Hang in there with all that snow.  We got a portion of the blizzard here in the DC area but the effects of it were high winds (all.night.long) and rain.


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## branv

Oh that poor girl and her family.  My heart just aches for them.  It's hard to make sense of things when you hear of children having to go through something like that.  I hope so much that they find a way to help her.  And I wish for strength for all of them.


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## lupitail

Christine said:
			
		

> Wow, orange-sized?  I have run into a few people that had large tumors with their thyroid cancer (predominantly men).  Were you conscious of that tumor in your neck?  The ones I've talked to had no idea but I wonder how you can't feel that, unless it's not really growing in the size of a ball but is more elongated.



No didn't feel thing. Had been complaining of neck pain but that was about it. Woke up on day with a gumball size thing coming out of my neck. Surgeon said the tumor started bleeding and that was a scab that popped thru. Thank God it did!!!


----------



## mrsklamc

MadMim said:


> Hello again.  There was nothing rare or spectacular about my cancer.  Im actually struggling with a lot of guilt because the whole process was so easy for me.



Don't feel guilty. 

Christine-- If you like fiction, have you read "The Fault in Our Stars"? Then again, maybe you shouldn't. I don't usually read fiction but it's a teenaged girl with thyroid cancer, and she lives in Indy, so I couldn't pass it up. I loved it.


----------



## Christine

mrsklamc said:


> Don't feel guilty.
> 
> Christine-- If you like fiction, have you read "The Fault in Our Stars"? Then again, maybe you shouldn't. I don't usually read fiction but it's a teenaged girl with thyroid cancer, and she lives in Indy, so I couldn't pass it up. I loved it.



Oh, I've read it and I recommended it a few pages back on this thread.  I've also gushed about it several times on the 2013 book thread.  I think it was my favorite book from last year.


----------



## mrsklamc

Christine said:


> Oh, I've read it and I recommended it a few pages back on this thread.  I've also gushed about it several times on the 2013 book thread.  I think it was my favorite book from last year.



I just LOVED it and I don't usually read fiction or like sad books. John Green probably lives less than 10 miles from me. Sorry I either missed or forgot that you mentioned it.


----------



## luvmarypoppins

So I guess I must read this book. 

Happy Valentines Day everyone Virtual flowers in case you dont get any. I am not getting any because I am allergic, But so thoughtful dh has offered to take me grocery shopping for valentines day. Guess that says love, right along with the 4 tires he bought me once for christmas,

Well did I say how my re clast infusion got cancelled. Dh and I were none too happy I was waiitng months for this infusion. So now its back on except at an earlier time next friday. DS21, the nurse to be is taking me. He wants to see the infusion. Sounds like some excellent bonding time

Oh and remember the girl I told you about. Well the tumor board met and now they are saying its a non cancerous tumor. I looked it up on line. Its really rare, a ? astrocytoma. Her mom wants to try natural food to shrink it because the only way to get rid of it since they only could resect 50% of it is with radiation and chemo which they want to start asap. So the mom is trying to get 2nd and 3rd opinions. I think she is looking at Duke. etc.

In the meantime, this girl is having her mom give her a diet of no carbs, no sugar, no dairy and something else. I think thats worse than the lid diet. She has 4 siblings and I am sure its gonna be bad when she sees what they eat etc. I cant even give her recommendations for all that. I think I might tell the mom to ask the dietician i had. She is really nice and helpful.I dont like to be pushy or nosy etc. 

Hope everyone is doing ok


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## luvmarypoppins

Ugh,they have cancelled my infusion again for friday. The girl tells me there are 2 infusion nurses, one is in training and the other one has a sick dad in the hospital. 

I announce my total frustration and displeasure. Asking is there is Any place else I can go etc. She says, well you can maybe go over to the cancer center if they have a chair for you. O.K. I really dont want to be taking someones chemo time away.

She reschedules my appt. for next friday and says she might have to cancel it again. I think I will see about looking into the cancer center. 

Christine - guess what. I finally posted the first 3 books I read for 2013. I am proud of myself! Onto #4. I also just won another one and the publisher wants me to post a little review on their facebook page. I have never written a book review before. Wouldnt know what to say etc. Its a faith based non fiction book.

Hope everyone is doing well.


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## robynslp

How long post op for partial thyroidectomy will it take before I'm up to doing all my normal stuff?  I have my surgery scheduled for 3/21 and have a 10k race on 4/6.  My surgeon seems to think I should have no problems.  I'm willing to walk that race.  My bigger concern is I have been invited to join a relay team that will do 200 miles over the course of 36 hours.  It will start 3 weeks post op.  Doable? Crazy? I'm in pretty good shape and am going to be training like a beast up to my schedule.


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## mrsklamc

I wouldn't think recovery from a partial thyroidectomy would be too bad; The only reason I wasn't up and around right away was that I had what's called a radical neck dissection and I couldn't drive because the size of my incision meant I didn't have full range of motion.


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## branv

Well, no comfort from the Veracyte test.  It came back today still suspicious for Hurthle Cell Neoplasm, which they state now makes me at a 40% risk of it being cancer.

I also saw my sweet baby Bumble yesterday for our 12 week scan.  Jumping around, waving to us, bopping his/her big ol' head   It's a little bittersweet today.

My doctor and OB agree that I shouldn't wait until after the pregnancy to have my thyroidectomy, simply b/c of the more aggressive nature of Hurthle Cell Carcinoma.  The question now is whether to do a partial, to protect my hormones and parathyroids during pregnancy and hope it comes back negative after all.  Or to find out if the possibility of having to do back-to-back surgeries to remove the second half (if it is cancer), is more of a risk to the baby than a total thyroidectomy.  My doctor is going to consult with "the top thyroid doctor" at MD Anderson, as well as my perinatologist.  Then we'll make a choice, and my surgery will probably be at the end of March @ 16 weeks gestation.

I know that there's still a very good chance that this will turn out to not be cancer.  I'm adjusting to that.  But right now, I'm just so sad and nervous that I have to do this surgery while pregnant.  Even though the risk is small, it's still there.  I know this is the right choice for all of us, but it's painful nonetheless.  I'm working on finding that strength and peace I know I'm capable of, for all our sake.  

Thanks for listening.


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## luvmarypoppins

branv said:


> Well, no comfort from the Veracyte test.  It came back today still suspicious for Hurthle Cell Neoplasm, which they state now makes me at a 40% risk of it being cancer.
> 
> I also saw my sweet baby Bumble yesterday for our 12 week scan.  Jumping around, waving to us, bopping his/her big ol' head   It's a little bittersweet today.
> 
> My doctor and OB agree that I shouldn't wait until after the pregnancy to have my thyroidectomy, simply b/c of the more aggressive nature of Hurthle Cell Carcinoma.  The question now is whether to do a partial, to protect my hormones and parathyroids during pregnancy and hope it comes back negative after all.  Or to find out if the possibility of having to do back-to-back surgeries to remove the second half (if it is cancer), is more of a risk to the baby than a total thyroidectomy.  My doctor is going to consult with "the top thyroid doctor" at MD Anderson, as well as my perinatologist.  Then we'll make a choice, and my surgery will probably be at the end of March @ 16 weeks gestation.
> 
> I know that there's still a very good chance that this will turn out to not be cancer.  I'm adjusting to that.  But right now, I'm just so sad and nervous that I have to do this surgery while pregnant.  Even though the risk is small, it's still there.  I know this is the right choice for all of us, but it's painful nonetheless.  I'm working on finding that strength and peace I know I'm capable of, for all our sake.
> 
> Thanks for listening.



Oh branv, I am so sorry the results were not conclusive. I am sure this is getting to you. I am glad that your dr. is consulting with the MD Anderson dr My friends friend in TX goes there and she gets excellent care and they are the best for sure. 

Have you checked out the thyca website. It might help to see about others have gone through this. I know I did read 2 threads from 2 other girls who went through it but cant remember all the details.

Yes I think hurthle is one of the aggressive ones. My variant is aggressive too. But so far so good for me and God is so good with all I have been through. 

I think I did read on that website that some had the thyroidectomy and then waited until after the birth to have the radiation etc. 

I hope you get the answers you need to make an informed decision. Hang in there sweetie.  If you had to have surgery would you go to MD Anderson or have it done closer to your home? 

Honestly I think I would go there just for the sheer fact that they can do your pathology right there and they have seen lots of this stuff so their pathologists would probably be spot on etc. 

I had to have several pathologist look at my slides and it took a while because none of them had seen my variant very often. My rad. onc. says she gets 1 or 2 patients a year with what I have and that is because they have to come from other hospitals to get the rai there, So basically I was like the 1 who had the rare one that year etc.  And this is a large teaching hospital, so 
if I were you I would want the best right off the bat etc.

Wishing you all the best. My thoughts and prayers are with you.


----------



## branv

Thank you so very much luvmarypoppins, it continues to mean a lot to have survivors like yourself remind me that even if it ends up being cancer, I can get through. 

I also wanted to say I am so very sorry you keep getting the run around about your infusion.  Even if it's beyond their control, it sounds like they are expecting you to be as cavalier as they are about your health.  *sigh* You don't want anyone to experience what you do, but sometimes I can see how helpful it would be to swap shoes with people for just a day so they could have more understanding of your feelings at least.

And that is wonderful news about the little girl.  Well, of course, not that she has this terrible thing in her brain, but that it is not cancer.  It's amazing how hearing something like that, about someone I never even met, can lift your spirits so much.  Although, again, I can't trust these pregnancy hormones lately because even commercials make me cry. 

I had a wonderful morning.  I actually woke up smiling, thinking about the baby.  And I realized that every morning for two months, the first thing I've thought when I woke up was, "Is today the day I will find out <insert bad news>."  I've spent all this time waiting for a phone call, but today I woke up and I already knew.  And I know I still have to have surgery, and I still have to find out if it's cancer.  But that's four weeks away.  So today, I woke up, and I was a mom-to-be instead of a patient.   I may not get this every day, but today is AMAZING.


----------



## luvmarypoppins

Well I had the infusion. Ds21 took me. He was happy to learn a lot from the infusion nurse. He asked about some vein finder thing and he said they didnt have one where he was so voila, she popped one out of the cabinet and was testing it on ds and herself while teaching him. They couldnt do me since I was infusing at the time.

A soon as she started I was getting a bad ringing in my L ear and that is finally better today. I was also very tired and thirsty. Last night I felt like I had a sore throat and chills so I took some tylenol. But today I even went to church, The only symptom I am having now is still being so tired. Well it sure is a lot better than having that horrid fever like last time.

Did anyone see Broke Burke on tv? I think she looked really good and I couldnt see the scar. She said she tried to explain things to her kids. She never mentioned rai Maybe she didnt need it? Well maybe in the future she could bre a good voice for thy ca etc. But just with the right info etc.


----------



## branv

No surgery for me for right now!!!!! 

My ENT was finally able to consult with Mr. Big Thyroid Expert at MD Anderson (my way of admitting pregnancy brain can't seem to retain is name).  He said he would NOT perform surgery on me (yet).  He said he can't say, of course, it's NOT cancer, but that he thinks it's very likely it isn't.  That though Hurthle cells are present, that in a nodule with extensive Hashimoto's damage (lymphocytes) like mine has, it is quite common to see them there, and a lot less likely to be malignant Hurthle.  And given my age, the size of the nodule, etc, if it were, it would be unlikely to be moving aggressively right now.

So, we will do another sono in 3 months just to make sure something hasn't changed drastically. And if we do surgery, it will be after delivery.

I know this doesn't mean I'm in the clear.  But it does make me feel better, more hopeful, and so so so so happy to avoid surgery while pregnant. 

Just wanted to put this here -- there is so little information out there still about hurthle cell, and even less about it in pregnancy.  I hope if someone comes along after me, who is looking for information, this will help them out.

I know I've said it a million times, but thanks for letting me vent.  It's helped so much.


----------



## mrsklamc

Did you ladies know that there is a connection between thyroid issues and endometriosis?


----------



## luvmarypoppins

branv - so glad for your good news. I am glad they are cautious but optimistic. I am sure that news just made your day!!  I know what you mean about the lack of info. Thyca. org did have a few posters that had issues like you. I know one had surgery, one was told to go get an abortion (didnt want to mention that to you before - everyone told her to get a 2nd opinion etc). and I think the other one I read might have had the surgery too. And had rai after delivery.   

I had a hard time getting info about my rare variant and even my rad. onc. couldnt find any for for me, but I think since then a few papers or articles have been written. I think it took them 15 years to find enough patients to publish it etc.

Micayla - I have heard of this. My sis did have very bad endometriosis and I really think she had thyroid problems but they didnt diagnose her as usual. I think she was probably pretty hyper, fast heart beat (even though she had the heart disease we didnt know about), dry and protruding eyes, something like graves etc. 

I know you are on the journey and I am praying for you. I am sure its emotionally and physically draining. Wishing you all the best as usual.

I am sick with a ear/sinus/throat thing I think I know now when I am getting this. Anyone ever get sharp pain by the jaw. It seems I am getting that on the dissection side. Its not swollen just painful. I think the salivary gland is draining ok. I think it it gets worse than I might do a hot compress. I already took 2 tylenol which seemed to help. So annoying. My ear is ringing and now by my ear/face is hurting too


----------



## branv

mrsklamc said:


> Did you ladies know that there is a connection between thyroid issues and endometriosis?



Oh no, really?  That makes me wonder about my older sister. She also has hypo/hashimotos, and it never really seems to be under control.  She had also had various female problems for years.  In addition, she had a few miscarriages, though was thankfully able to carry two daughters to term in her early 30's.  Her endometriosis was so bad, at first they were convinced she must have cancer.  At age 43, she finally had to have a complete hysterectomy.  It was awful for her.  I don't know if better control of her thyroid would have made a difference, but it's still a shame that no one ever told her of that connection.



luvmarypoppins said:


> branv - so glad for your good news. I am glad they are cautious but optimistic. I am sure that news just made your day!!  I know what you mean about the lack of info. Thyca. org did have a few posters that had issues like you. I know one had surgery, one was told to go get an abortion (didnt want to mention that to you before - everyone told her to get a 2nd opinion etc). and I think the other one I read might have had the surgery too. And had rai after delivery.
> 
> I had a hard time getting info about my rare variant and even my rad. onc. couldnt find any for for me, but I think since then a few papers or articles have been written. I think it took them 15 years to find enough patients to publish it etc.
> 
> I am sick with a ear/sinus/throat thing I think I know now when I am getting this. Anyone ever get sharp pain by the jaw. It seems I am getting that on the dissection side. Its not swollen just painful. I think the salivary gland is draining ok. I think it it gets worse than I might do a hot compress. I already took 2 tylenol which seemed to help. So annoying. My ear is ringing and now by my ear/face is hurting too



Wow...I never once had a single doctor tell me that was necessary.  In fact, they were all very reassuring that surgery during pregnancy is not ideal, but done successfully often, and very unlikely to harm the baby.  But, I have to say, with all that I've read about thyroid patients/survivors struggles for treatment that fits their needs, I guess not as much surprises me any more.  Though there are downfalls with misinformation, I think the internet is overall a wonderful thing -- patients are getting far more educated, and in turn able to push their doctors to look beyond lab work and statistics.  I wish, for you, that more information had been available when you went through your surgery/diagnosis.  But thankfully, because of people like you who are willing to share their story, others have guidance they might not have had before.  

Sorry you're feeling poorly -- goodness, it seems like everyone I know is dealing with awful sinus infections lately that just won't go away.  I also didn't realize that the surgery/treatment for thyroid cancer can affect the salivary glands!  Yikes!  I've had an infected salivary gland before and it was NOT fun.  Hope you feel better soon.


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## Crystal Brewer

Subscribed  Glad to have found this thread tho not time now to read every post I shall!! I've experienced symptoms heart palpitations being most scary 240 pm tho didnt know where to begin with physicians so went to cardio he put me on monitor which lead to # above his advice $30,000 surgery to explore NOT my DH is self contractor and had convo with cpl customers they told him about thyroid I honestly kinda blew it off as much of my family is deceased so I couldn't ask about genetics which most say it is NOW I'm reading this thread seeing many of my symptoms Maybe time for that blood work DH begged me to get!! At least now I'm armed with a Lil more knowledge than "check my thyroid" Yes I'm one of those weirdos whose not particularly fond of Dr offices!! Thank You Thank You Thank You DIS its been a true blessing to have found this board!!!


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## Crystal Brewer

Ok sorry but just beside myself with all the knowledge jumped back to last page making sure post made it as I was reading pp on this page I really WOWed I had hysterectomy at 26 due to cancer caused by endemitriosis I'm SO excited silly as it sounds I've went downhill since DS12 just been coasting through life thinking I was crazy!! Hugs to those of y'all who have been fighting this battle tho I now see hope to normality!!


----------



## luvmarypoppins

welcome crystal. 

I still have the cold. I think the worst part is having a clogged up nose and breathing through my mouth. It dries my whole mouth out. I can only take the HBP cold meds because of all my bp meds. And worse I think we ran out of those because we ran out of the normal cold meds and  told the ds they could use the high blood pressure cold meds so now my supply is gone. I dont even like to take meds anyway unless I have to. At least I am not coughing because that would be the worst with the neck dissection. Its just congestion that is annoying me.

Ok, carry on everyone and have a great day.


----------



## SarBear

Hi all, I'm pretty  new to the boards and just found this. I'm hypothyroid, diagnosed with Hashimoto's after the birth of my daughter. I also have pretty bad endometriosis and have suffered a miscarriage and other fertility issues because of it. I found the link between the two not very long ago and was pretty interested in it since both are considered auto-immune diseases. I was out of range at my last appt so they upped me to 125 mcg levothyroxine. Even when I'm regulated I have issues with being cold all the time though. People who have never dealt with thyroid issues don't really understand all the discomfort it can cause. I just feel like a lot of people don't take it very seriously. Anyway, I'm rambling and just wanted to say hi and introduce myself (I'm Sarah, by the way) and say I'm glad to have found this thread.


----------



## cceandme

so glad this thread id here. I got diagnosed with Graves disease when I was pregnant about 5 years ago. Unfortunatly I had a miscarriage. My doc told me that sometimes pregnancy can trigger Graves disease.

Was on meds for a while but lost my job. have a new job but no health insurance so unfortunatly i havent been able to see the dr so i havent been on my meds for a while.

Having hyperthyroid suck. I'm hot all the time. i dont loose weight because I'm always hungry and so i eat alot. dont gain either so thats good.  I' also thirst alllll the time. its crazy cant get enough water to drink. lol.  I get muscles pain too.

worst time i had with this disease was when i had excruciating joint pain all over my body. i was in bed a week and could barely move. my boyfriend had to leave me a pain pill out everynight because i couldnt open the bottle my hands hurt so bad. they are not sure if the pain was from the Graves itself or the mediation. they lowered my dose anyway (PTU).

hate these heart palpatations. sometimes my BP gets high and I get dizzy nd get blurry vision. been a while since that last happened though.

Was wondering if there are any holistic things that can help control thyroi levels.


----------



## SingingMom

cceandme said:
			
		

> so glad this thread id here. I got diagnosed with Graves disease when I was pregnant about 5 years ago. Unfortunatly I had a miscarriage. My doc told me that sometimes pregnancy can trigger Graves disease.
> 
> Was on meds for a while but lost my job. have a new job but no health insurance so unfortunatly i havent been able to see the dr so i havent been on my meds for a while.
> 
> Having hyperthyroid suck. I'm hot all the time. i dont loose weight because I'm always hungry and so i eat alot. dont gain either so thats good.  I' also thirst alllll the time. its crazy cant get enough water to drink. lol.  I get muscles pain too.
> 
> worst time i had with this disease was when i had excruciating joint pain all over my body. i was in bed a week and could barely move. my boyfriend had to leave me a pain pill out everynight because i couldnt open the bottle my hands hurt so bad. they are not sure if the pain was from the Graves itself or the mediation. they lowered my dose anyway (PTU).
> 
> hate these heart palpatations. sometimes my BP gets high and I get dizzy nd get blurry vision. been a while since that last happened though.
> 
> Was wondering if there are any holistic things that can help control thyroi levels.



Please try to see a doctor about your Graves' disease.  A hyperactive thyroid can damage your internal organs -heart, kidneys, liver....

"SingingMom" ....Sent from my iPad using DISBoards


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## lthiesfeld07

New to this thread. 

I've been struggling with weight for my life and I always thought thyroid. Dr always said diet and exercise... Well I finally qualified for hypothyroid, but I need a new dr. He won't give me mess to help it.

Has anyone ever tried the cookie diet for hypothyroid? 

Thanks and good luck to everyone.

Sent from my iPad using DISBoards


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## robynslp

cceandme said:


> so glad this thread id here. I got diagnosed with Graves disease when I was pregnant about 5 years ago. Unfortunatly I had a miscarriage. My doc told me that sometimes pregnancy can trigger Graves disease.
> 
> Was on meds for a while but lost my job. have a new job but no health insurance so unfortunatly i havent been able to see the dr so i havent been on my meds for a while.
> 
> Having hyperthyroid suck. I'm hot all the time. i dont loose weight because I'm always hungry and so i eat alot. dont gain either so thats good.  I' also thirst alllll the time. its crazy cant get enough water to drink. lol.  I get muscles pain too.
> 
> worst time i had with this disease was when i had excruciating joint pain all over my body. i was in bed a week and could barely move. my boyfriend had to leave me a pain pill out everynight because i couldnt open the bottle my hands hurt so bad. they are not sure if the pain was from the Graves itself or the mediation. they lowered my dose anyway (PTU).
> 
> hate these heart palpatations. sometimes my BP gets high and I get dizzy nd get blurry vision. been a while since that last happened though.
> 
> Was wondering if there are any holistic things that can help control thyroi levels.



Definitely don't stay off your meds - I almost lost my best friend to kidney failure as a direct result of not taking her thyroid medicines.  She had to have a kidney transplant.  



lthiesfeld07 said:


> New to this thread.
> 
> I've been struggling with weight for my life and I always thought thyroid. Dr always said diet and exercise... Well I finally qualified for hypothyroid, but I need a new dr. He won't give me mess to help it.
> 
> Has anyone ever tried the cookie diet for hypothyroid?
> 
> Thanks and good luck to everyone.
> 
> Sent from my iPad using DISBoards



Don't know what the cookie diet is.  Get your lab work and find a dr that does more autoimmune and hormonal disorders.  I found a nurse practitioner  that was willing to listen to my family history.

My surgery is this Thursday.  I haven't had surgery since I was teen.  Back then I was fearless.  Now I am not looking forward to going through this! I have hosted several hissy fits about this.  Honestly, I am scared.  Initially, I went to the NP wanting a baseline for my thyroid since my family has such a mess of thyroid problems.  I figured I would the bulletproof one and expected nothing from my ultrasound.  After 30 minutes, I stopped the tech and asked her if she was able to tell me anything.  She told me that I had at least 8 nodules and she was having to get good info on all of them.  After multiple ultrasounds, 1 nodule finally worked its way into the "biopsy needed" direction.  I figured again, that biopsy would be nothing, but it was folliculiar neoplasm so here I am having to have surgery to find out for sure what it is.  Of course, the biggest chances are that it is non-cancerous, but NOTHING has happened like I have expected through this.  

Thank you all for listening.  Trying to keep busy until Wednesday night.


----------



## Crystal Brewer

Well....back to crazy??!! Results in TSH 1.27 T4 1.20?? I'm sure set back as after seeing such a wide range of symptoms actually coming from one source I thought aha even took survey online coming back with 33 of 38 symptoms associated?! Dr says he believes skin disorder is cholesterol also due to hysterectomy some symptoms menopause I just want ME back feel as my family is paying price for my unwell being ;-(( HUGS to each of you


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## luvmarypoppins

sarah - welcome.  I hope your new dose helps. I am constantly cold too. I would be happy if it was in the 90s but we are having snow and rain here later today.

cceandme - I would try to get back on your meds too. Does your state offer a program you would qualify for. Also some drug companies offer free meds to people who financially qualify. I know my aunt and uncle get some. Wishing you all the best.

ltheisfeld - I have not heard of the cookie diet

robynslp - Wishing you all the best with your surgery thurs. I was afraid too. Its only natural. It helped that they let me hold the mask. I was also singing some of my favorite christian praise songs to myself and that helped too. Or you could dream about a nice disney world vacation

Christine - I think I just won about another 6 books. I better get a move on it!

Mickayla - thinking of you and saying a prayer with all you are going through. Hang in there!


----------



## robynslp

Home from my partial thyroidectomy. Everything went smoothly. I was really caught unawares as to how hard it is to swallow with all those muscles upset. I'm a speech pathologist so it puts my feeding therapy in a new light.  If my pathology comes back ca my surgeon wants to get me back in right away (like next Wednesday!). I am of course hoping that we don't need to go that route.


----------



## luvmarypoppins

Robyn - glad your surgery went well. I had a  lot of swallowing issues post surgery. Maybe stick to the soft stuff right now like meatloaf, mashed potatoes, pudding, ice cream etc.

Lettuce was the worst for me and cole slaw. Thought I was going to choke and die. Also french fries and bread that was too soft. 

Guess best to try a little of something and then go from there. 

Hoping you get good results from your pathology. Wishing you all the best.


----------



## Christine

robynslp said:


> Home from my partial thyroidectomy. Everything went smoothly. I was really caught unawares as to how hard it is to swallow with all those muscles upset. I'm a speech pathologist so it puts my feeding therapy in a new light.  If my pathology comes back ca my surgeon wants to get me back in right away (like next Wednesday!). I am of course hoping that we don't need to go that route.



Hoping your pathology is BENIGN!!!


----------



## robynslp

Pathology came back and it is benign.  I was ill prepared for how much pain eating would cause. I lost 3 pounds that first week (I had them to lose so I trying to not find them.) Since I'm a speech pathologist I know all kinds of things to help get a successful swallow, but little made it hurt less.  Thank you for all the support on this board. I have to continue to monitor the nodules on the left side, but hopefully they will stay small and non-problematic.


----------



## Christine

robynslp said:


> Pathology came back and it is benign.  I was ill prepared for how much pain eating would cause. I lost 3 pounds that first week (I had them to lose so I trying to not find them.) Since I'm a speech pathologist I know all kinds of things to help get a successful swallow, but little made it hurt less.  Thank you for all the support on this board. I have to continue to monitor the nodules on the left side, but hopefully they will stay small and non-problematic.



Great news!!!!!


----------



## luvmarypoppins

robynslp said:


> Pathology came back and it is benign.  I was ill prepared for how much pain eating would cause. I lost 3 pounds that first week (I had them to lose so I trying to not find them.) Since I'm a speech pathologist I know all kinds of things to help get a successful swallow, but little made it hurt less.  Thank you for all the support on this board. I have to continue to monitor the nodules on the left side, but hopefully they will stay small and non-problematic.



So glad to hear the wonderful news!


----------



## mrsklamc

Robyn - SO glad you got good news.


----------



## Christine

http://www.self.com/health/2013/04/thyroid-cancer-risks

Just read this article last night in Self magazine.  I'm almost compelled to write in about it because I feel that it is reckless reporting but I've got enough to complain about!!!

I feel the article did a real injustice to people who may have or who are struggling with how to handle their thyroid cancer.

I realize that, for a long time, there have been "theories" that some thyroid cancers may never progress; i.e., back in the 80s, during routine autopsies of elderly people, they found micro-thyroid cancers thyroid glands.  They suspect that many of us walk around like this and they never progress.

But once you've found a tumor?  Don't treat it?  Ahhh...I don't think so.


----------



## cceandme

Anybody had any luck with a gluten free diet helping with thyroid issues? 
I'm starting gluten free to help my arthritis and read that it can help thyroid disease also. Anyone know?


----------



## bellanotte10

hi all! Just found out i have a tiny little cyst on my thyroid 3mm big. My ENT who found it doesn't seem that concerned, and passed it off as not a big deal at all. do these things grow? i'm not concerned either, but still not a fun thing to hear. 

right now i have all the symptoms of hypo but every tsh test comes back normal (except for that cyst they just found) I also have a grandmother and aunt who were both hypo so I keep getting tested and tested, but never test abnormal for tsh, despite the symtpoms


----------



## Christine

bellanotte10 said:


> hi all! Just found out i have a tiny little cyst on my thyroid 3mm big. My ENT who found it doesn't seem that concerned, and passed it off as not a big deal at all. do these things grow? i'm not concerned either, but still not a fun thing to hear.
> 
> right now i have all the symptoms of hypo but every tsh test comes back normal (except for that cyst they just found) I also have a grandmother and aunt who were both hypo so I keep getting tested and tested, but never test abnormal for tsh, despite the symtpoms



Cysts can grow so I would think that you should have it looked at once a year.  At some point, it should be biopsied if it grows.  Otherwise, it's fine to watch it.

A lot of things can bother women and make them feel like they have a thyroid problem.  I felt horrible for a long time and chalked it up to not having a thyroid gland and just not being right.  My thyroid numbers were perfect.

It took a few years to figure out but I had a very low ferritin level (this measures your iron stores).  It should be at least at 50-70.  Mine was at 3.  I had just started to become mildly anemic.  Once I started supplementing with iron, it was a major improvement.  But for a long time, I blamed my thyroid and my doctors felt it was "all in my head."


----------



## SingingMom

Christine said:


> Cysts can grow so I would think that you should have it looked at once a year.  At some point, it should be biopsied if it grows.  Otherwise, it's fine to watch it.
> 
> A lot of things can bother women and make them feel like they have a thyroid problem.  I felt horrible for a long time and chalked it up to not having a thyroid gland and just not being right.  My thyroid numbers were perfect.
> 
> It took a few years to figure out but I had a very low ferritin level (this measures your iron stores).  It should be at least at 50-70.  Mine was at 3.  I had just started to become mildly anemic.  Once I started supplementing with iron, it was a major improvement.  But for a long time, I blamed my thyroid and my doctors felt it was "all in my head."



I was the same with the iron.  You know how the blood work says high or low.... Mine said ALERT in red. Lol. 
I also had a very low vit D level. I felt much better when that was taken care of.

"SingingMom" ....Sent from my iPad using DISBoards


----------



## bellanotte10

ooh thats good to know. I just had anemia last year and was bad until about december, very low ferritin etc, and a low b12, and put on ferrous gluconate. recently was re-tested while off the iron and was stable and normal. I had some uterine polyps that was causing the anemia they think. Apparently i'm filled with cysts and polyps   I'm switching to a new doctor (my old primary care left) so hopefully we get this all sorted out. I do feel like i'm going crazy and that its all in my head.  

Thanks for the help!


----------



## luvmarypoppins

cceandme said:


> Anybody had any luck with a gluten free diet helping with thyroid issues?
> I'm starting gluten free to help my arthritis and read that it can help thyroid disease also. Anyone know?



No sorry, never tried this, but I am sure any anti inflamatory stuff for the diet would be good for you. Wishing you all the best.


----------



## luvmarypoppins

bellanotte10 said:


> ooh thats good to know. I just had anemia last year and was bad until about december, very low ferritin etc, and a low b12, and put on ferrous gluconate. recently was re-tested while off the iron and was stable and normal. I had some uterine polyps that was causing the anemia they think. Apparently i'm filled with cysts and polyps   I'm switching to a new doctor (my old primary care left) so hopefully we get this all sorted out. I do feel like i'm going crazy and that its all in my head.
> 
> Thanks for the help!



I hope your new dr. is helpful and you are both on the same page about your care. I had severe anemia and had to have 3 blood transfusions and a non existent b12 so I needed shots for that and plus the non existent vit. d, I am good right now except for the vit d which I take 50,000 iu prescript. once a week

Wishing you all the  best. I am thinking of changing drs. too. Mine needs to retire. He is not with it on anything, especially calling with test results.


----------



## luvmarypoppins

Christine said:


> http://www.self.com/health/2013/04/thyroid-cancer-risks
> 
> Just read this article last night in Self magazine.  I'm almost compelled to write in about it because I feel that it is reckless reporting but I've got enough to complain about!!!
> 
> I feel the article did a real injustice to people who may have or who are struggling with how to handle their thyroid cancer.
> 
> I realize that, for a long time, there have been "theories" that some thyroid cancers may never progress; i.e., back in the 80s, during routine autopsies of elderly people, they found micro-thyroid cancers thyroid glands.  They suspect that many of us walk around like this and they never progress.
> 
> But once you've found a tumor?  Don't treat it?  Ahhh...I don't think so.



I read the article. I really was not happy with it either. I am glad they did have Dr. Shah say something. Dh friend goes to Sloan but I dont know if he is Dr. Shahs patient. He is a guy and they are watching his cyst. They are deciding what to do. The fna is neg but the guy says its pressing on his throat etc?  

I think that Dr. Davies quotes are a little mis represented etc. I think she is the one that needs to be addressed. If she is only a research nurse does she only look at statistics? Of course I say I am not a statistic. I dont fit into a surgical algorithm etc.  

That got me to thinking. Last time I went to the er with the possible blood clot in my lung that turned out t be the bad muscle pull, I told the er dr. think outside your little box with me! 

Yes we all dont fit into their little surgical/cancer boxes etc. And you know that with me for sure!

But I do see the trend seems to be going more toward watchng the little stuff, especially with younger people, have your read/heard this?


----------



## luvmarypoppins

Oh and now to take you away for one minute from your regularly scheduled thyroid posts.....

I'm going to Disney Ditching well, having to call the onc. and reschedule my yearly visit for this! lol!

I had to wait because dh is traveling to Los Angeles , San Francisco and then Russia for 13 days. So we finally booked it last night. He needs time to catch up on his reg. work before we go etc. 

Of course I am trying to save money because we need a new roof and driveway. Our house is needing lots of tlc. Its getting older.

So we cashed in dh ff miles for 4 days at the Beach Club, Club Level, heah its a really big anniv. for us, so its something he deserves. He works really hard for sure. So thats free!  Then we are switching over to the Yacht Club water view for 3 days June 1-4.

Then since I was on a roll I looked at all our southwest points and saw dh had enough for a whole free trip so that costed only a whooping $2.50! and I had enough for 1/2 of my flight, so I only paid $125. 

Of course all the money we save we will probably spend eating! 

I need a vacation and am so looking forward to this!


----------



## buzlite

Hi I just wanted to let people know that they should make sure what type of thyroid carcinoma they have. Their are multiple types. If you plan on doing any type of research about your condition, it will help you be more concise. IE. Follicular, medullary, papillary or anaplastic.


----------



## Christine

luvmarypoppins said:


> Oh and now to take you away for one minute from your regularly scheduled thyroid posts.....
> 
> I'm going to Disney Ditching well, having to call the onc. and reschedule my yearly visit for this! lol!
> 
> I had to wait because dh is traveling to Los Angeles , San Francisco and then Russia for 13 days. So we finally booked it last night. He needs time to catch up on his reg. work before we go etc.
> 
> Of course I am trying to save money because we need a new roof and driveway. Our house is needing lots of tlc. Its getting older.
> 
> So we cashed in dh ff miles for 4 days at the Beach Club, Club Level, heah its a really big anniv. for us, so its something he deserves. He works really hard for sure. So thats free!  Then we are switching over to the Yacht Club water view for 3 days June 1-4.
> 
> Then since I was on a roll I looked at all our southwest points and saw dh had enough for a whole free trip so that costed only a whooping $2.50! and I had enough for 1/2 of my flight, so I only paid $125.
> 
> Of course all the money we save we will probably spend eating!
> 
> I need a vacation and am so looking forward to this!



I'm so jealous!!

I want to go SO bad this year but can't.  My DD's college tuition doubled this year (due to a major change) and my son is starting in the FALL. I feel SO broke.  Of course, the government thinks I'm apparently rich because I get no tuition credits, no aid, no nothing.  We will be living VERY austere for at least one year.  I hope my HVAC system holds out.


----------



## luvmarypoppins

buzlite said:


> Hi I just wanted to let people know that they should make sure what type of thyroid carcinoma they have. Their are multiple types. If you plan on doing any type of research about your condition, it will help you be more concise. IE. Follicular, medullary, papillary or anaplastic.



Welcome.  What kind do you have??


----------



## robynslp

Quiet thread lately.  I hope everyone is doing well.

I'm over a month post partial.  I feel run down, run over and just in general BLAH.  This is normally my best time of the year as I recover from Seasonal Affective Disorder but it just seems to be dragging on.  

I am going for labs this week and maybe they will tell the tale, but I assumed all would be well with just a partial.  The remaining tissue would do its job.  

I was also woefully underprepared for how long I would have swelling (fluid?) in the area.  Feels like they put a golf ball in my neck.


----------



## luvmarypoppins

robynslp said:


> Quiet thread lately.  I hope everyone is doing well.
> 
> I'm over a month post partial.  I feel run down, run over and just in general BLAH.  This is normally my best time of the year as I recover from Seasonal Affective Disorder but it just seems to be dragging on.
> 
> I am going for labs this week and maybe they will tell the tale, but I assumed all would be well with just a partial.  The remaining tissue would do its job.
> 
> I was also woefully underprepared for how long I would have swelling (fluid?) in the area.  Feels like they put a golf ball in my neck.



Sorry you are dealing with all the post op issues. Hope the labs will give your endo a good picture as to what is going on. Do you take synthroid? Maybe a dosage adjustment is needed?

I am still dealing with tiredness,but its a constant thing with me. 

Is the fluid an actual golf ball sized lump? Or just puffiness, for lack of a better description. If its an actual lump, maybe it could be a seroma? I had one drain in for weeks post op but I had lots of fluid due to the 3 surgeries. If its just fluid I am assuming your body will reabsorb it? But if its a true lump then I would ask the surgeon etc. Do you have any more post ops with the surgeon scheduled?

Wishing you all the best. Hang in there!


----------



## AmazingGrace

Just found this thread. My obgyn saw that my thyroid looked big, so she ordered blood work and an ultrasound. The good news is, my blood work was normal. The not so good news is, the tech let me peek at my ultrasound this morning. There was the thyroid, all butterfly shaped and right there on the left side was a huge darker grey area. The other angle showed that area lit up in red and blue, large patches and the other side showed red and blue dots. When she did the ultrasound, the right side really hurt sharply and the left side felt like I was being strangled, so I don't know what to think. Dr. Google, of course, is no help. So I guess I'm just in the waiting stage. I have noticed over the past month or two, I'm having a hard time swallowing pills. I'm wondering about my blood work too. I've not felt my healthiest in a long time. Just tired, headachy and just not well. Any insight or experience would be greatly appreciated.


----------



## luvmarypoppins

Hi LoriAnn - glad you made your way over here, Oh and on a personal note I saw your ? from a long time ago, I dont know how to answer it on that page, but my grandmas brother owned the house in Sayreville (Parlin) that was by the cemetary on the corner and Dominics Market, does that sound familiar? My cousins wife knew the Bon Jovi boys of course. She said they would always hang out in some deli after school I think.

Now onto your thyroid stuff. What blood tests did you get done? Tiredeness could also be low B12 and iron stuff. Did you just get thyroid blood tests?

Christine probably knows more about the ultrasound stuff so I cant really answer that. I think my one tumor showed up as a black/very dark spot with a while ring around it. They really didnt show me too much, I just peeked and I knew it wasnt good when she made me keep lying on the table and pulled the radiologist in right there to look at it and they said I needed a ct scan. Then after that it was the pet scan. 

I think you should def consult with an ent dr./surgeon. They have special cameras they can look down into your throat with in the office. Uncomfortable but tolerable. 

Wishing you all the best and keep us updated.


----------



## AmazingGrace

I went in and saw my PCM today. She said that I have a few nodules and the one on the right is about 12 mm. So she put in a referral to endocrine and I'm waiting to get a biopsy scheduled. She also said that my thyroid is definitely enlarged.


----------



## mrsklamc

I had a non stimulated thyrogobulin level that came back undetectable recently so that was good news. Mostly just dealing with my OTHER medical problems- the fact that my teeth are terrible from the lack of saliva post RAI and the fertility stuff. 

Those who are in limbo, just hang in there. I know it's tough and scary but yesterday I was feeling sorry for myself and outside the doctor's office was a woman who had no feet. Reminded me pretty vividly of that old saying "I was sad when I had no shoes and then I met a man who had no feet," or however that goes.


----------



## luvmarypoppins

LoriAnn - I am glad you are going to an endo. Glad that you are getting the biopsy too. You have dealt with a lot on your plate lately (your other surgery)

Micayla - I hear you about teeth stuff. My dentist says I have very little bone there. Right now I am sitting with 1 capless tooth, my decision. Dont have time to fix it right now etc. Also I am praying for you on your journey. I am sure its stressing both physically and emotionally. I hear what you say about seeing someone else. I think sometimes God helps you put things into perspective.

And on to some other news. I just called the oncologist to reschedule my appt. She says she is booked and gives me July. I said, well it was suppose to be May and you pushed it till June and now you are giving me the end of July?? She said shes really booked. That means translated - you are going to be waiting in the waiting room a long time etc. She doesnt do anything anyway but I know we will be discussing the 5 year scan that will be next year. She books that up then too I think. Well Christine, pipe in on this, Do you know anything that has not had the 5 year scan. Maybe its me but I dont want anymore radiation. I already had that ct scan in the er etc. I dont mind doing the diet etc. But isint the blood test enough?? I am just wondering if they do the 5 year thing as protocol and as part of thyroid cancer algorithm etc?? Anyones thoughts??

Oh and onto some disney stuff for your reading pleasure, lol. We are eating at Cape May, Chefs de France, Hollywood Brown Derby, Yachtsman, Kouzzina  Kona, and Citricos.

Most of the planning is done. I just need to order the town car since dh hates the magical express and book a wheelchair.

Oh and since ds3 is flying out to calif. this week end to be with dh they are going to..Disneyland of course. Hmm, I guess they just wanted me to know that little fact and  ds1 is going up to Providence or Kingston Rode Island to coach a basketball tournament so its just ds2 and me.


----------



## SingingMom

luvmarypoppins said:


> LoriAnn - I am glad you are going to an endo. Glad that you are getting the biopsy too. You have dealt with a lot on your plate lately (your other surgery)
> 
> Micayla - I hear you about teeth stuff. My dentist says I have very little bone there. Right now I am sitting with 1 capless tooth, my decision. Dont have time to fix it right now etc. Also I am praying for you on your journey. I am sure its stressing both physically and emotionally. I hear what you say about seeing someone else. I think sometimes God helps you put things into perspective.
> 
> And on to some other news. I just called the oncologist to reschedule my appt. She says she is booked and gives me July. I said, well it was suppose to be May and you pushed it till June and now you are giving me the end of July?? She said shes really booked. That means translated - you are going to be waiting in the waiting room a long time etc. She doesnt do anything anyway but I know we will be discussing the 5 year scan that will be next year. She books that up then too I think. Well Christine, pipe in on this, Do you know anything that has not had the 5 year scan. Maybe its me but I dont want anymore radiation. I already had that ct scan in the er etc. I dont mind doing the diet etc. But isint the blood test enough?? I am just wondering if they do the 5 year thing as protocol and as part of thyroid cancer algorithm etc?? Anyones thoughts??
> 
> Oh and onto some disney stuff for your reading pleasure, lol. We are eating at Cape May, Chefs de France, Hollywood Brown Derby, Yachtsman, Kouzzina  Kona, and Citricos.
> 
> Most of the planning is done. I just need to order the town car since dh hates the magical express and book a wheelchair.
> 
> Oh and since ds3 is flying out to calif. this week end to be with dh they are going to..Disneyland of course. Hmm, I guess they just wanted me to know that little fact and  ds1 is going up to Providence or Kingston Rode Island to coach a basketball tournament so its just ds2 and me.



I had papillary carcinoma of the thyroid, totally removed, and spread to about 7 lymph nodes.  This was 20 years ago.  I did not have radioactive iodine treatment because I wanted to get pregnant and didn't feel comfortable about it.  My endocrinologist was supportive in my decision, since my initial scan was just over 2%. They look for you to be under 2%, at least back 20 years ago (The radiologist in the hospital thought I was putting a bullet in my head.  He was very nasty and treated me like I was an imbecile.)  

Apparently the protocol is different now, but I never had another body scan.  I had periodic chest xrays and a few ultrasounds, but that is all.  

Disney news:  We are heading to Germany on our second Adventures by Disney trip and back to Disney World again in January as our Christmas gifts to each other.  (DH, me, and DD20)


----------



## mrsklamc

Update on the "thyroid cancer? sign me up" lady. Looks like she did end up having cancer, and maybe that silly post was written out of denial.

http://www.huffingtonpost.com/michelle-baker/yoga-benefits_b_2849811.html


----------



## Christine

luvmarypoppins--I think the protocol is all over the place.  My endo told me that the "new" thinking was Thyrogen and blood testing.  But you are a unique case and I think based on the extensive and aggressive thyroid cancer you have, I am not surprised on the "5 Year Scan" thing.  I also think that there are general recommendations that go out and your doctor has the ultimate choice to decide what they believe is the safest protocol.

I know you don't want more radiation but you can try to comfort yourself with the fact that the scan dose is not too high.


----------



## mrsklamc

It's only been two years since my 'clean' scan and she wants to do it again.  Hope she starts reading up on some of this new literature.


----------



## bhagaman

Will be 3 years in October since my complete thyroidectomy and the removal of 2 parathyroids and 24 lymph nodes (7 were cancerous, parathyroids were benign) when I was 19. I have had two ultrasounds on my neck in the past year which have shown a few lymph nodes enlarged. My endo says they have not grown any bigger, which must be a good sign I suppose. This last Monday and Tuesday I had two Thyrogen shots, followed by a blood test Wednesday. I had an I 131 scan yesterday and the result came in today. My scan came up negative, which is good news. But my thyroglobulin level has bumped up a bit. Doc says not a lot but there is definitely thyroid tissue somewhere. She is scheduling me a CT Scan and potentially a biopsy on those lymph nodes in my neck. Anyone else go through this? Did you scan come up negative but there was something somewhere that the scan couldn't pick up? I'm a little nervous. Any advice or insight would help, thank you!


----------



## Christine

bhagaman said:


> Will be 3 years in October since my complete thyroidectomy and the removal of 2 parathyroids and 24 lymph nodes (7 were cancerous, parathyroids were benign) when I was 19. I have had two ultrasounds on my neck in the past year which have shown a few lymph nodes enlarged. My endo says they have not grown any bigger, which must be a good sign I suppose. This last Monday and Tuesday I had two Thyrogen shots, followed by a blood test Wednesday. I had an I 131 scan yesterday and the result came in today. My scan came up negative, which is good news. But my thyroglobulin level has bumped up a bit. Doc says not a lot but there is definitely thyroid tissue somewhere. She is scheduling me a CT Scan and potentially a biopsy on those lymph nodes in my neck. Anyone else go through this? Did you scan come up negative but there was something somewhere that the scan couldn't pick up? I'm a little nervous. Any advice or insight would help, thank you!



I haven't had this happen personally; however, I do know that you can have a negative scan and a positive Tg.  Tg is *supposed* to be THE gold standard for thyroid cancer.  Alternatively, you can have a positive scan and a negative Tg which is supposed to be less of a concern.  Remnant thyroid tissue produces Tg and so does very small cells of thyroid cancer.  Normal thyroid tissue would show up clearly on a scan.  Thyroid cancer cells--if not well-differentiated--will often now "glow" as much because they are not behaving as normal thyroid cells.  

I actually haven't heard of people following up with a CT for thyroid cancer unless they were trying to get a better look at large masses to see what the size is like.  I'm not thinking that's your case as an ultrasound would have picked that up.  So that part, I'm not sure of.   More than likely, it is the nodes in your neck.  My coworker has had thyroid cancer for over 20 years.  She always gets a clean scan, but her Tg is persistently elevated.  They suspect it's in her nodes but they've removed many and still it persists.  She's had alcohol ablation of the nodes.  Still has an elevated Tg.  It does not seem to really impact her except that she spends a LOT of time being monitored.

Did they, by chance, tell you what your Tg level is?


----------



## bhagaman

Christine said:


> I haven't had this happen personally; however, I do know that you can have a negative scan and a positive Tg.  Tg is *supposed* to be THE gold standard for thyroid cancer.  Alternatively, you can have a positive scan and a negative Tg which is supposed to be less of a concern.  Remnant thyroid tissue produces Tg and so does very small cells of thyroid cancer.  Normal thyroid tissue would show up clearly on a scan.  Thyroid cancer cells--if not well-differentiated--will often now "glow" as much because they are not behaving as normal thyroid cells.
> 
> I actually haven't heard of people following up with a CT for thyroid cancer unless they were trying to get a better look at large masses to see what the size is like.  I'm not thinking that's your case as an ultrasound would have picked that up.  So that part, I'm not sure of.   More than likely, it is the nodes in your neck.  My coworker has had thyroid cancer for over 20 years.  She always gets a clean scan, but her Tg is persistently elevated.  They suspect it's in her nodes but they've removed many and still it persists.  She's had alcohol ablation of the nodes.  Still has an elevated Tg.  It does not seem to really impact her except that she spends a LOT of time being monitored.
> 
> Did they, by chance, tell you what your Tg level is?




For some reason I want to say a 19. I don't know if it was .19, or what. And that may be completely wrong. My doc doesn't seemed too concerned at this point, because she said the Tg only elevated slightly. She also said she was going back and forth with herself to even biopsy the nodes, so to me that is also assuring that she isn't very concerned. Her exact words were, "I want to get a baseline on you." All of my other blood levels have came back negative, besides this. I've done a little research and I've seen that in my case, with the negative scan/positive Tg, it's very rare. And the only outcomes from there are 1. It's completely unrelated to my original thyroid cancer or 2. it's too small to pick up on a camera, but it is there, somewhere. Hopefully more explanation helps....


----------



## mrsklamc

I also had a negative scan and a positive Tg. They zapped me again and a year later it was not detected.


----------



## bhagaman

mrsklamc said:


> I also had a negative scan and a positive Tg. They zapped me again and a year later it was not detected.



Did they do a CT scan or PET to look for the thyroid cells after you had a negative scan positive tg? Or did they just go straight to treatment?


----------



## AmazingGrace

I'm having a thyroid biopsy done on the 29th of May. I'll keep y'all posted!


----------



## mrsklamc

bhagaman said:


> Did they do a CT scan or PET to look for the thyroid cells after you had a negative scan positive tg? Or did they just go straight to treatment?



They did a PET because one radiologist thought maybe he saw something on a lung. My endo didn't think so, but she did the PET scan anyway and sent it to another radiologist who has a lot of experience with metastasized thyca. They didn't see anything but they proceeded with the second dose of RAI based on my Tg.


----------



## luvmarypoppins

bhagaman - I know once I did ask my rad. onc. what would happen with the neg scan and the elevated tg. She said, well that means its somewhere and I have to go and find it. I did ask, well then how will you find it and what will you do.. She said, oh just let me worry about that etc. So I dont know what her plan of action would be.

Its good to know your dr. is on top of it. Sometimes watching and waiting and seeing is a good idea too. If she has your baseline number to start with she will compare it with the next sets of tests. When are they wanting to do another blood test?

Just curious - what was your initial rai dose? and how many positive lymph nodes did you have?

LoriAnn - I hope you will get some answers from the biopsy. I am sure that date cant come fast enough. You sure have been though a lot lately. 

And for anyone who is interested...here is a proud mom brag..ds3 got to be student nurse of the day today because his instructor said he wrote the best care plan she has ever seen for a psych rotation! Yeah! 

Last time today I am talking to my dh for a week since he cant get calls out in China where he is going. 

I am thinking of braving the Be Our Guest lunch line. I am reading the best chance is to get there before 11 am etc. 

Anyone see Angie Everhart announcing she has thy ca. I wish some of these celeb cancer people would be good spokespersons etc.

We are having Ethan Zohn from Survivor at my hosp. here for the cancer survivors day. I never go to it but maybe one day the ds will talk me into it. I think its more geared to the people who go to the cancer center which I dont go to. They have dunk the doctor. Hmm, if mine was ever there I would like to drown the dr. and you all know why


----------



## bhagaman

luvmarypoppins said:


> bhagaman - I know once I did ask my rad. onc. what would happen with the neg scan and the elevated tg. She said, well that means its somewhere and I have to go and find it. I did ask, well then how will you find it and what will you do.. She said, oh just let me worry about that etc. So I dont know what her plan of action would be.
> 
> Its good to know your dr. is on top of it. Sometimes watching and waiting and seeing is a good idea too. If she has your baseline number to start with she will compare it with the next sets of tests. When are they wanting to do another blood test?
> 
> Just curious - what was your initial rai dose? and how many positive lymph nodes did you have?
> 
> LoriAnn - I hope you will get some answers from the biopsy. I am sure that date cant come fast enough. You sure have been though a lot lately.
> 
> And for anyone who is interested...here is a proud mom brag..ds3 got to be student nurse of the day today because his instructor said he wrote the best care plan she has ever seen for a psych rotation! Yeah!
> 
> Last time today I am talking to my dh for a week since he cant get calls out in China where he is going.
> 
> I am thinking of braving the Be Our Guest lunch line. I am reading the best chance is to get there before 11 am etc.
> 
> Anyone see Angie Everhart announcing she has thy ca. I wish some of these celeb cancer people would be good spokespersons etc.
> 
> We are having Ethan Zohn from Survivor at my hosp. here for the cancer survivors day. I never go to it but maybe one day the ds will talk me into it. I think its more geared to the people who go to the cancer center which I dont go to. They have dunk the doctor. Hmm, if mine was ever there I would like to drown the dr. and you all know why




I don't remember what my dose was, this was years ago. I know it wasn't a lot because I did outpatient RAI and was sent home after my pill. Everyone did have to stay away from me though for a few days. 

I had my CAT scan today, hopefully results will be in tomorrow. I spoke with my doc this morning and she says that the Tg bump doesn't necessarily mean it's malignant, it just means they may have missed some thyroid tissue when we did my original surgery and treatment. 

She also said that my level went up to a 19. I don't know what that means.


----------



## luvmarypoppins

bhagaman - I guess years ago aka 3 is probably an eternity when you are 22.

I would suggest keeping a folder with all your important cancer info like rai dose, maybe a journal, biopsy reports, pathology etc.

Just wondering why your dr. chose the ct scan over the pet scan? What area did you have the ct scan on? Did you have contrast?  Because if you need more rai you will have a waiting period for the contrast to clear your body. 

I am just thinking I would rather have a pet scan because it would show any cancer not just thyroid that is in your body. I was told it can find something the size of a pin head.

Hope your get good results tomm. and keep us informed.  Hang in there.


----------



## DisneyNurse19

Hi everyone, 
I was diagnosed with Thyroid Cancer at the age of 5, this month i will be 52. I had 5 operations, no chemo or radiotherapy. I have ugly scars on my neck as they had to operate in 4 places to remove all the cancer but i can live with that.  I visit the Royal Marsden every year to have bloods tested and to see the Dr, after all these years they now want to reduce my Levothyroxine which i expect means weight gain although so far so good 
Good luck to everyone


----------



## Christine

bhagaman said:


> I don't remember what my dose was, this was years ago. I know it wasn't a lot because I did outpatient RAI and was sent home after my pill. Everyone did have to stay away from me though for a few days.
> 
> I had my CAT scan today, hopefully results will be in tomorrow. I spoke with my doc this morning and she says that the Tg bump doesn't necessarily mean it's malignant, it just means they may have missed some thyroid tissue when we did my original surgery and treatment.
> 
> She also said that my level went up to a 19. I don't know what that means.



After my thyroid surgery, I definitely had remnant.  It was small but visible on a scan.  Oddly enough, my Tg was not detectable.  Of course, back then, they couldn't measure under "5" so I could have had a detectable Tg of, say, 3 or so.  

A Tg of 19 is not horrific but it is higher than would be tolerable for a wait and see attitude.  I would also think that you might be able to see a remnant that was producing.  Of course, everyone behaves differently.  If you had low-dose RAI (which I did--I had 30 mci only), it could be as simple as needing a big dose.  That's how I got mine cleaned up.


----------



## Christine

DisneyNurse19 said:


> Hi everyone,
> I was diagnosed with Thyroid Cancer at the age of 5, this month i will be 52. I had 5 operations, no chemo or radiotherapy. I have ugly scars on my neck as they had to operate in 4 places to remove all the cancer but i can live with that.  I visit the Royal Marsden every year to have bloods tested and to see the Dr, after all these years they now want to reduce my Levothyroxine which i expect means weight gain although so far so good
> Good luck to everyone



Wow, I think you must be the youngest patient I've ever heard of having thyroid cancer.

Did they attribute your cancer to any sort of radiation exposure?


----------



## DisneyNurse19

Christine said:


> Wow, I think you must be the youngest patient I've ever heard of having thyroid cancer.
> 
> Did they attribute your cancer to any sort of radiation exposure?



I was told that i was the youngest in the World to have had it and we were given no reason, just one of those things


----------



## AmazingGrace

Okay, so endo called today about my upcoming biopsy. It's a fine needle biopsy with no numbing.  NO NUMBING! I was all like whaaaaa? Seriously? How bad does this hurt? Biopsy guy said that a blood draw hurts worse? Really?


----------



## Christine

AmazingGrace said:


> Okay, so endo called today about my upcoming biopsy. It's a fine needle biopsy with no numbing.  NO NUMBING! I was all like whaaaaa? Seriously? How bad does this hurt? Biopsy guy said that a blood draw hurts worse? Really?



I didn't have a fine-needle biopsy of the thyroid but I've had them other places.  Nope, no numbing and I have not found them to be painful.  I have heard from others who've had the thyroid done that it's really not that bad.  Sometimes you can have some bruising after word but that is due to bleeding under the skin.


----------



## choppee

wow- i am so shocked, amazed and thrilled to find this thread! i am dealing with hyperthyroid issues that started in the fall of 2011. the way my thyroid issues were found out was because i was having such terrible headaches and heart palpitations...let's just say that my symptoms were through the roof with all the weight loss, shaking, insomnia, and muscle weakness. it was such a terrible time, and i couldn't get anyone to really understand how awful i felt. compounded upon that, i was in a terrible work situation so my illness had me severely depressed and struggling to stay afloat as a wife, mother and daughter. you guys understand how it is. fast forward to now--i have been on methimazole for a while now, and my dosages are slowly coming down. i started on 40 mg a day (!!!!) and am now taking 5 mg every other day. this is even feeling a bit more than i need as well. my endo is taking more tests to see if we can stop the methimazole altogether. that would be great for me, because i have lost and gained weight so much as of late! when i first started, the methimazole was too strong and put me into hypo mode--i gained almost 25 lbs! now, i would like to go back to my pre-hyper weight which would have me lose about 20 lbs. regardless, i am so glad to be in a healthier place and to meet/speak with other people who know exactly what this thyroid situation is like. thanks to whomever started this thread, and know that i am very grateful for this. though my head knows that there are more out there like me, it is so comforting to see that i am not alone.


----------



## mrsklamc

DisneyNurse19 said:


> I was told that i was the youngest in the World to have had it.



Oh by no means. Infants have it.


----------



## luvmarypoppins

AmazingGrace said:


> Okay, so endo called today about my upcoming biopsy. It's a fine needle biopsy with no numbing.  NO NUMBING! I was all like whaaaaa? Seriously? How bad does this hurt? Biopsy guy said that a blood draw hurts worse? Really?



I didnt think it was too bad, uncomfortable but not all that bad. I say this as I gripped the chair, white knuckle grip, not due to fear, but trying to stay really still so they can get a good stick.  Oh and I had to have it done at least 3 times in the one session I think.

The first time they didnt get enough cells.   Then I had another biopsy. That one he shook up my neck as they call it, trying to get more cells into the needle.

I ended up wit a third biopsy because they knew mine was something rare. I had to have a core biopsy and that is like a caulk gun going into the side of your neck. My ent calls it making a pass. I dont know if that is really the correct medical term to get a biopsy sample. He said he didnt like his lst pass so I got the wonderful caulk gun again and a nice dinner at Outback from dh! That one I did have to put an ice pack on my neck and take tylenol. I guess you could do that with the regular fna if it really bothered you.

So my lst two fnas were inconclusive. 

Honestly the worst needles I have had so far were the ones they were sticking in my eye area and tear duct area to see how the radiation ruined my tear duct canals. 

Have your dh get you a nice dinner after that! You deserve it. My dh usually goes with me for stuff like that. He feels so sorry for me and says - honey let me take you out to dinner etc.

Seriously LoriAnn, wishing you all the best. Probably the other things you have been through were a lot worse and you have really been a trooper through all of this so far. Hang in there sweetie!


----------



## NeedProfessionalHelp

Thanks for starting this. Subscribing


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## AmazingGrace

luvmarypoppins said:


> I didnt think it was too bad, uncomfortable but not all that bad. I say this as I gripped the chair, white knuckle grip, not due to fear, but trying to stay really still so they can get a good stick.  Oh and I had to have it done at least 3 times in the one session I think.
> 
> The first time they didnt get enough cells.   Then I had another biopsy. That one he shook up my neck as they call it, trying to get more cells into the needle.
> 
> I ended up wit a third biopsy because they knew mine was something rare. I had to have a core biopsy and that is like a caulk gun going into the side of your neck. My ent calls it making a pass. I dont know if that is really the correct medical term to get a biopsy sample. He said he didnt like his lst pass so I got the wonderful caulk gun again and a nice dinner at Outback from dh! That one I did have to put an ice pack on my neck and take tylenol. I guess you could do that with the regular fna if it really bothered you.
> 
> So my lst two fnas were inconclusive.
> 
> Honestly the worst needles I have had so far were the ones they were sticking in my eye area and tear duct area to see how the radiation ruined my tear duct canals.
> 
> Have your dh get you a nice dinner after that! You deserve it. My dh usually goes with me for stuff like that. He feels so sorry for me and says - honey let me take you out to dinner etc.
> 
> Seriously LoriAnn, wishing you all the best. Probably the other things you have been through were a lot worse and you have really been a trooper through all of this so far. Hang in there sweetie!



Will I be able to go work my kids club shift that night?


----------



## mrsklamc

Absolutely. I went straight to work after mine.


----------



## DisneyNurse19

mrsklamc said:


> Oh by no means. Infants have it.



I am sure they do but back when i was 5 i was the youngest.


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## mrsklamc

Nope. You may have been the youngest your doctor had heard of.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1813099/?page=1


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## bhagaman

Okay update....

CT Scan came back normal, nothing extremely irregular. But I have a small nodule in my right lung. Doc says it's more than likely scar tissue, but I'm still a little concerned because my last X-ray did not show a nodule in my lung. My doc is out of the office today, so I left her a message with a bunch of questions. 

She said she wasn't concerned, we're going to hold off for a while. I'll get an ultrasound in 3 months and then another CT scan in 6 to look at the nodule.


----------



## branv

Hi everyone!  Just wanted to check in and see how everyone is doing.  I hate to see that there are new people, but glad you found a helpful place to land.  Hoping all of you are getting excellent care, and have the support you need.  Goodness knows the emotional side of it is overwhelming at times.

Regarding the PP who is getting a biopsy w/o numbing, I did have it with both of mine.  But I was also told that really the numbing is only effective mostly at the surface -- in other words, they really do it so you won't feel the shots as they enter the skin, but the irony is that you get a shot to avoid feeling the shots!  I know that even with numbing I could feel a bit of the needle inside my neck, but it wasn't what I would call painful, more of a mild pinching, mostly pressure feeling.  I think the hard part is mental, not physical.  Getting my blood drawn is harder.

On my end, I hit 24 weeks today of my pregnancy and little man is starting to thump away.  I am so grateful my thyroid hasn't appeared to affect anything so far.  My labs still look normal, and a recent three month follow up scan showed that the nodules I have haven't really grown much.  There may be a miniscule new one, but it and any growth of the others are so small that they can't be sure it's not just a difference in the radiology equipment or the technician doing it.  Plus my perinatologist and ENT warned that pregnant women tend to see an increase of thyroid issues.  Despite my labs being in the middle normal range even w/o meds, they did put me on a preventative very low dose of thyroid meds b/c "at this dose, it can't hurt, only help".  In part b/c of the pregnancy, and also b/c they said some people even see a reduction in nodule size or growth on meds.  So...fingers crossed!

For anyone here now or coming in the future, I've learned some more about that Veracyte Afirma test that many doctors are beginning to use to avoid the diagnostic thyroidectomy.  UHC just announced a partnership to provide coverage for this test.  This is incredibly important as the test is almost $5000 for each sample!  And if they are covering, others will likely follow.  Mine was sent in w/o anyone really understanding this, so I'm fighting right now to get insurance to pay for mine (I have UHC, but it was done about 3 mos before they announced coverage...oy).  Too many docs still don't know about this test, so if you get a ruling of indeterminate or suspicious, don't let them send you straight for the thyroidectomy.  Ask your doctor about this test (and, of course, get insurance approval first!). 

Best wishes to all of you.


----------



## DisneyNurse19

mrsklamc said:


> Nope. You may have been the youngest your doctor had heard of.
> 
> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1813099/?page=1



Thank You


----------



## bellanotte10

Arg. I went to go have a test done unrelated but kinda related to my thyroid. Apparently not only do I have a cyst on my thyroid,  but it's enlarged very slightly. Enough to make a note. I knew about the cyst but he didnt tell me it was slightly enlarged. I heard the people running the test talk about it. Oh well. I guess since he's not concerned its nbd cuz it's only slightly enlarged?


----------



## luvmarypoppins

bellanote - at least they know about it and are keeping an eye on it, so that is good.

Well I called the rad. onc. office. They just had a computer generated letter sent to me wth my original appt. but she said ny new appt. is in the computer system so that is good. I didnt want any more hassles.

And the wheelchair co. who we rent from at Disney called and asked dh where we were?. Seems they got the dates mixed up. I checked my confirmation and its the right dates. Never had that happen before. Of course this happened days ago and dh just tells me today

There are going to be 5 of us from the breast cancer thread on the cb there at Disney next week too, so hopefully we will be having a few meet ups. Should be fun. They are a great bunch of ladies.

Its so cold here. Like 58 was the high, Rainy etc. We have the heat on and I think I am going to sleep with my winter pj's. Where is summer?? It was suppose to be the opening of the pool where ds lifeguards, Of course that didnt happen.

Saw rain for next week in Florida too. Oh well. At least it will be warmer there. I need to look for my disney poncho..


----------



## Devilsangel7681

Hi everyone, just stumbled across this board.

I have hypothyroidism.

I was born without a thyroid. Or so the doctors thought..when I turned 15 puberty hit and All of the sudden my throat swelled and goiters could be seen on the outside! Something was wrong. Also went through depression, emotional teenage stuff all at once. Not good.

Doctors did the iodine radiology tests and found the goiters. Did an ultrasound and discovered they are benign. They upped my dosage on synthroid and I have been fine ever since. I'm 27.

Your thyroid has a lot of say when it comes to your hormones as we all know, I'm just glad my parents took me to a great doctor early on and everything was ok.

I have some questions though, maybe someone can help...

sometimes the goiters make my throat feel slightly closed? Not like I can't breathe, but more like I can feel them there. Anyone else with goiters feel like this?

Also, I don't plan on ever having kids. I am wondering if there will ever be a point that my hormones will change the rest of my life and that I need to keep an eye on my symptoms...menopause I suppose?

Thanks for the help


----------



## AmazingGrace

So I had my biopsy today. It wasn't pleasant, but I got through it. The dr wasn't going to go ahead at first because bamc biopsies nodules that are 1.5 cm and mine was 1.2. He looked at the ultrasound, talked to me about symptoms and decided to go through with it. The first two passes or so hurt going in, but were manageable. The third or fourth pass nearly knocked me off the table. And I kept reflexively swallowing. He said that the ultrasound showed that it was a solid mass, some calcification, surrounded by a ring of fluid. So now I'm just sitting here, resting. My neck and throat ache a bit and there's junk running down the back of my throat that tastes like blood. It's not, but it's really unpleasant.


----------



## Piper

This may have been asked before.  I searched and didn't find it.

I take Levothyroxine sodium 50mcg and the pharmacist said I had to take it first thing in the morning and wait at least an hour before I ate or drank anything and 2 hours before dairy.  This means no coffee for 2 hours after I wake up (I drink milk in it.)  It is a PITA. Although I drink decaf, I still want something to drink other than water!  And I have to wait at least an hour before I can eat breakfast--2 if I'm having anything with butter or cream cheese.

Has anyone else been told this?  If so, how do you handle it?


----------



## traceypi

Hi Everyone,

I've been on Levoxyl for the past 12+ years and much to my surprise when I went to refill my prescription the other day I was told Levoxyl had pulled off the shelves.  Seems it won't be coming back to 2014/15.  What's amazing is my endocrinologist nor my GP have bothered to contact me to let me know about this.  Apparently doctors were notified back in February about this potential shortage.

Now I'm faced with the issue of go generic or switch to Synthroid. I have no idea what to do.  I had radioactive iodine back in the early 90's and was on Thyroxine in the UK before Levoxyl (150mcg).  I've never had any issues, thank God.  Now I'm worried. Anyone else in the same boat?


----------



## Christine

Yes, I am in the same boat!  Just found out last week.  

So what is happening is that whatever container the drug company is now using for the large quantities of Levoxyl, well, it smells.  There is an odor when opening the bottle.  It's not from the medication.  So they have recalled all of it and I guess they have to work on getting new containers and getting the production back up.  Hard to believe it will take until next year.

The bad part for me is that the reason I take Levoxyl is because I am allergic to a very common filler:  povidone.  Levoxyl is one of the few thyroid medications that does not have it.  The pharmacy attempted to give me Synthroid over the weekend but I had to explain the povidone issue.  They researched it for me and we determined that the new medication, Tirosint, does not have it.  So they go my doctor to change over to that.  I just hope I don't have any adjustment issues to the new brand.  Geez...



traceypi said:


> Hi Everyone,
> 
> I've been on Levoxyl for the past 12+ years and much to my surprise when I went to refill my prescription the other day I was told Levoxyl had pulled off the shelves.  Seems it won't be coming back to 2014/15.  What's amazing is my endocrinologist nor my GP have bothered to contact me to let me know about this.  Apparently doctors were notified back in February about this potential shortage.
> 
> Now I'm faced with the issue of go generic or switch to Synthroid. I have no idea what to do.  I had radioactive iodine back in the early 90's and was on Thyroxine in the UK before Levoxyl (150mcg).  I've never had any issues, thank God.  Now I'm worried. Anyone else in the same boat?


----------



## Christine

Well, here's the deal:

Any kind of "food", even just milk, will interfere with your thyroid absorption.  This is why they tell you to take it on an empty stomach away from anything.  This will give you maximum absorption at the lowest dose possible.  As you are finding out, this doesn't always work for everyone depending on your schedule.  So it could be that you have to take your medication closer to food intake.  If this is the case, then, for example, 125 mg of thyroid medication may not get you to your TSH well and you might have to always be on a dose of 137 mg.  The deal is to get into a routine and stick with it and keep adjusting your medication dosage until you hit the sweet spot with your TSH.  My doctor told me this long ago.  For some people, it's just impossible to go two hours.

I am "lucky" in that I get up at 4AM everyday and I don't eat until much later at work.  I take my medication at around 4:20 and then I don't have my first cup of tea until 6:30 when I arrive at work and get settled.  I eat at 7:30.  You can bet, though, if my job required me to eat earlier, I would do it.  I'd take the medication and eat when I could.  If it meant I had to get a higher dose of thyroid meds, so be it.




Piper said:


> This may have been asked before.  I searched and didn't find it.
> 
> I take Levothyroxine sodium 50mcg and the pharmacist said I had to take it first thing in the morning and wait at least an hour before I ate or drank anything and 2 hours before dairy.  This means no coffee for 2 hours after I wake up (I drink milk in it.)  It is a PITA. Although I drink decaf, I still want something to drink other than water!  And I have to wait at least an hour before I can eat breakfast--2 if I'm having anything with butter or cream cheese.
> 
> Has anyone else been told this?  If so, how do you handle it?


----------



## traceypi

Christine,

Thanks for the reply.  I'm fortunate not to have any allergies but I also have heard the generics are iffy in terms of dosage accuracy as well as fillers of unknown variety.   

Also, in addition to food, one thing I found that also affected my absorption was my IUD.  Its a Mirena that lasts 5 years and as the potency goes down from about year 4 or 5 so does my dosage of Levoxyl, from 150mcg to 125mcg.


----------



## lizbaby007

I hear you about the allergy thing. For over 4 years I have been struggling with this thyroid thing. About 3 months after being diagnosed, I started having tremendous stomach pain, shortness of breath and a multitude of other things. I had every test known to mankind ran on me and most things appeared normal. I kept trying to tell the Doctors that I felt it was associated with my thyroid somehow as it only started after I began medication and if I take my medicine for about 3 days in row I start getting the excruciating pain.

Fast forward 4 yrs and me sporadically taking my thryroid medicine (on a few days off a couple of weeks and so on and so on) and I got a new Endo. I was telling her what was going on and she immediately said I was probably allergic to the filler in the medicine (of which I had tried Levothyroxine, Levoxyl, Armour, Synthroid etc) and that she wanted me to try a Hypoallergenic Medicine for a couple of months.  

So she prescribed me Tirosent and I started taking it. Well what do you know? I have now been on this medicine for 2 months straight and have not had an episode with my stomach. Not even once. It absolutely blows my mind that all this pain I have been going through was something as simple as an allergy! Thank goodness she listened and did not give me the standard "People have been taking thyroid medicine for a hundred years and it is absolutely safe, blah blah blah" line. Yes the medicine is safe, but apparently the fillers were not. Now I need to work on getting to the right dosage.

 One thing I noticed in the beginning was I had a little bit of insomnia. I started to take my medicine right before bed and have not had that problem anymore. I am not sure what the difference is of taking it in the morning or evening (since it is not an instant thing and takes a while to store up in your body) but it did solve the whole "do not eat within an hr" problem for me. I simply take it and then get in bed. 

I have been researching different Thyroid meds that are hypoallergenic and apparently there is one that also contains T3 called Nature-Throid. Does anyone have any experience with it? My dr does not like the dessicated meds, but I did really well energy wise when I was on Armour (just could not take it consistently) and would love to try it out.


----------



## Piper

Thank you for your replies to when you take your thyroid.  I did some research and found this study.  I think I am going to try taking it right before I go to bed.

http://thyroid.about.com/od/thyroiddrugstreatments/a/bedtime.htm


----------



## Christine

traceypi said:


> Christine,
> 
> Thanks for the reply.  I'm fortunate not to have any allergies but I also have heard the generics are iffy in terms of dosage accuracy as well as fillers of unknown variety.
> 
> Also, in addition to food, one thing I found that also affected my absorption was my IUD.  Its a Mirena that lasts 5 years and as the potency goes down from about year 4 or 5 so does my dosage of Levoxyl, from 150mcg to 125mcg.



The problem with generics is that the pharmacy can change the supplier from month to month so you are getting a different "brand" every time.  My local CVS states that they only use the generic from Mylan pharmaceuticals and they feel it is good.  It still has that "bad" filler though so I can't use it.

As for the birth control, many years ago I tried taking oral contraceptives and my TSH went to something like 8.0 no matter what I tried.  Finallly had to stop using them.  The doctors were baffled.


----------



## luvmarypoppins

Hi everyone, I will catch up when I get back. Just popping in from the Beach Club. tomm. we are changing to the yacht club.

Loriann - glad your biopsy is over sorry for the issues you had.

The weather has been so so. We always are inside when it rains so far.

Ate at chefs, citricos for our anniv. and hollywood brown derby so far, tonight cape may. Its really crowded. Wishes was a zoo the other night and we are going to brave the star wars parade on sunday and then leave there. 

Storm a long bay is the best! So is the wonderful beach club concierge floor, especially since we arent even paying for it!! Guess all dh trips and ff miles are good for something after all


----------



## Christine

Three month supply of Levoxyl = $20

Three month supply of Tirosint = $70

Yikes!


----------



## Enchanted Minnie

Hey everyone! I was diagnosed with Hashimoto's about 3 years ago. I've been on Levoxyl, levothryoxin, then Synthroid. I've had 2 different endo's. I stopped going to the first one when she kept saying my numbers are fine, maybe I'm depressed when I said I was still tired. Then she suggested I do a sleep study. Yeah ok.  My new endo is pretty good but darn it he's retiring! Plus, he still doesn't really listen to me when I say I'm tired!!!!! I just want to not be tired darn it!

So I started researching and am trying out desiccated bovine thryoid. We'll see if it helps! Along with coconut oil, selenium, vitamin D and my regular multivitamin!

Anyway just wanted to introduce myself, glad to know that there are many others of us around, not in a good way but at least we're not alone!


----------



## Christine

Welcome Enchanted Minnie!  Let us know how that dessicated thyroid medication works for you.  

You'll probably see that the most "vocal" of us on this thread are thyroid cancer survivors; however, a few people pop in with just regular thyroid issues so hopefully you'll find someone to compare notes with.


----------



## 3prettyprincesses

I'm trying not to freak out here lol but today I went in to pick up my Levoxyl prescription refill and the pharmacist told me that it's all been recalled!  They claim they don't have any and won't till maybe sometime in mid 2014.  I have one, ONE pill left.  I told the pharmacist that and she shrugged and said talk to your dr.  Nice.  She was ridiculously unhelpful and I asked her what am I supposed to do?  Talk to your dr.  Basically, it wasn't her problem even though I've been getting my prescription there for over 6 years.

I'm beyond irritated.  How can there be no more left and yet nobody thought to contact me, the patient??  Apparently my only option is to switch to another medicine for my thyroid.  I cannot tolerate the Armour so I guess that leaves me with Synthroid.  Does anyone know if it's gluten free?  Is it a difficult transition, going from Levoxyl to Synthroid?


----------



## Christine

3prettyprincesses said:


> I'm trying not to freak out here lol but today I went in to pick up my Levoxyl prescription refill and the pharmacist told me that it's all been recalled!  They claim they don't have any and won't till maybe sometime in mid 2014.  I have one, ONE pill left.  I told the pharmacist that and she shrugged and said talk to your dr.  Nice.  She was ridiculously unhelpful and I asked her what am I supposed to do?  Talk to your dr.  Basically, it wasn't her problem even though I've been getting my prescription there for over 6 years.
> 
> I'm beyond irritated.  How can there be no more left and yet nobody thought to contact me, the patient??  Apparently my only option is to switch to another medicine for my thyroid.  I cannot tolerate the Armour so I guess that leaves me with Synthroid.  Does anyone know if it's gluten free?  Is it a difficult transition, going from Levoxyl to Synthroid?



3prettyprincesses:  if you read above, you will see that a few of us have run into this.

My pharmacy did not tell me either and when I went to pick up the medication, she pulled it out and showed me it was Synthroid.  I have an allergy to the povidone filler in Synthroid and I told her I could not use it.  She volunteered to call my doctor to find a suitable replacement.  She worked with me right there to find one.  For me it is Tirosint.  It is much more expensive but I'm going to have to live with it until Levoxyl comes back into production. 

The medication itself is fine; however, apparently the containers used to ship the Levoxyl were giving off a foul odor and making the meds smell.  They pulled it all and, why it takes a year to get more out there is unknown to me.

I do agree that they could have notified Levoyxl customers in some way.  It's not as if they don't have all of our information.


----------



## 3prettyprincesses

Christine said:


> 3prettyprincesses:  if you read above, you will see that a few of us have run into this.
> 
> My pharmacy did not tell me either and when I went to pick up the medication, she pulled it out and showed me it was Synthroid.  I have an allergy to the povidone filler in Synthroid and I told her I could not use it.  She volunteered to call my doctor to find a suitable replacement.  She worked with me right there to find one.  For me it is Tirosint.  It is much more expensive but I'm going to have to live with it until Levoxyl comes back into production.
> 
> The medication itself is fine; however, apparently the containers used to ship the Levoxyl were giving off a foul odor and making the meds smell.  They pulled it all and, why it takes a year to get more out there is unknown to me.
> 
> I do agree that they could have notified Levoyxl customers in some way.  It's not as if they don't have all of our information.



I see I'm in the same boat as some of you here!  Strange how we all seemed to find out by going in to pick up our prescription.  Shouldn't the dr. have called us to let us know?  I think so.  At least your pharmacist was helpful though.

I've started the Synthroid and so far so good.  It's only been a day but hopefully the transition will be smooth.  I really hate riding the thyroid roller coaster.  

Has anyone else made the switch from Levoxyl to Synthroid?  How are you doing?


----------



## SingingMom

3prettyprincesses said:


> I see I'm in the same boat as some of you here!  Strange how we all seemed to find out by going in to pick up our prescription.  Shouldn't the dr. have called us to let us know?  I think so.  At least your pharmacist was helpful though.
> 
> I've started the Synthroid and so far so good.  It's only been a day but hopefully the transition will be smooth.  I really hate riding the thyroid roller coaster.
> 
> Has anyone else made the switch from Levoxyl to Synthroid?  How are you doing?



Good luck with the switch. Sometimes being a patient is so frustrating!!!

I have been on synthroid for 20 years.  Both my endocrinologists have told me to always insist on synthroid. When my husband's insurance changed, the mail order pharmacy wanted to change to levoxyl and I had to make a big stink.  @@.

"SingingMom" ....Sent from my iPad using DISBoards


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## AmazingGrace

Got my biopsy report back. It's benign and the doctor says I just need to follow up with ultrasound in six months. The bad thing is, I can feel this nodule and my thyroid is enlarged. There wasn't a copy of the path report for me to take, but what I saw said "colloid to hurthle cells present. When I told him about my discomfort, he was like 'oh well, maybe you need an upper GI or an ENT consult. I know I should be relieved, but I have a bad feeling about this.


----------



## Christine

SingingMom said:


> Good luck with the switch. Sometimes being a patient is so frustrating!!!
> 
> I have been on synthroid for 20 years.  Both my endocrinologists have told me to always insist on synthroid. When my husband's insurance changed, the mail order pharmacy wanted to change to levoxyl and I had to make a big stink.  @@.
> 
> "SingingMom" ....Sent from my iPad using DISBoards



I'm not sure about why they are stuck on Synthroid.  I've been told by three endos to only stick with brand name.  That could be Synthroid, Levothroid, or Levoxyl.  Since that time many years ago, they've added a few more "brands" such as Unithroid and Tirosint.  All well-respected brand name thyroid preparations.

I initially started out on Synthroid at 125 mcg which was not enough for me.  Back then, the next dose up was 150 mcg which was too high.  Levothroid made a .137 preparation so I was switched to that and never had a problem.  Then there was a recall on Levothroid and I had to go to Synthroid.  By then, they were making a .137 dosage.  I switched over and never felt a bit of difference and my TSH remained stable.  The bonus was that Levothroid was $5 cheaper per month.  Anyway, while on Synthroid I discovered that I was allergic to any medication that includes povidone.  So I had to switch to Levoxyl because it was the only one that didn't contain that.  My endo was okay with it because it was a brand name.  I switched to their .137 and have no issues with TSH stabilization or how I feel.  Bigger bonus:  it was really cheap--runs the same price as generic which is why a lot of people *think* it's a generic.  I pay $20 for a 3 month supply.  

But, now I on to Tirosint.  I expect I won't see a change at all.  I don't think the "Synthroid" preference is really the case anymore but I think it's been hammered into a lot of doctors heads because many years ago it was the only thing out there as far as T4 preparations.


----------



## SingingMom

Christine said:


> I don't think the "Synthroid" preference is really the case anymore but I think it's been hammered into a lot of doctors heads because many years ago it was the only thing out there as far as T4 preparations.



You could be right!  But, in my own case, I've never had a problem with synthroid so I am of the thought "if it ain't broke, don't fix it"!  
 I was a young thyroid cancer patient (29) and 21 years later, am still hanging in there!  Lol

"SingingMom" ....Sent from my iPad using DISBoards


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## Christine

SingingMom said:


> You could be right!  But, in my own case, I've never had a problem with synthroid so I am of the thought "if it ain't broke, don't fix it"!
> I was a young thyroid cancer patient (29) and 21 years later, am still hanging in there!  Lol
> 
> "SingingMom" ....Sent from my iPad using DISBoards



Oh, I definitely agree with the "if it ain't broke, don't fix it" mindset!!  For me, though, at times, it really does come down to money.  My health insurance charged a premium for Synthroid (as they do now for Tirosint).  For something that you have to take every day, every month, every year, the cost was really adding up for me when I had to figure it in with all my son's asthma medications.  If I could go from $70 every three months to $20 every three months with no impact to how I felt, then I was all for that!!!!


----------



## luvmarypoppins

AmazingGrace said:


> Got my biopsy report back. It's benign and the doctor says I just need to follow up with ultrasound in six months. The bad thing is, I can feel this nodule and my thyroid is enlarged. There wasn't a copy of the path report for me to take, but what I saw said "colloid to hurthle cells present. When I told him about my discomfort, he was like 'oh well, maybe you need an upper GI or an ENT consult. I know I should be relieved, but I have a bad feeling about this.



Glad to hear you got great results LoriAnn.

Who did your original biopsy? If they now want you to have an ent referral. I would take the ent referral especially since you say you are having discomfort. Is the discomfort just pain or swallowing issues etc? 

I think its wise to get an ent opinion/referral.

Wishing you all the best.


----------



## luvmarypoppins

welcome to all the new posters

Sorry to hear everyone is having all the med problems with levoxyl. I think its terrible about the short to no notice of replacement too.

Sounds like no ones dr. told them about it ahead of time?

I have always taken name brand synthroid. My ins. wont pay for it either, so Christine I feel your med pain. Mine is $25 a month plus all my ds asthma meds and my other meds. I think we get 7 between us a month. The pharm loves us!

Nothing too much new, other than I am going to the rad. onc. on june 20th. 

Our trip to disney was good, You can read about my magical night on the resteraunt board, the thread is  - I cried at Yachtsman 6/1. 

My r hip was hurting a lot  when we were there. I dont know if the reclast infusion I had is suppose to help it or not but I am having a lot of issues. I dread going to the dr. I already know the huge doses of 200 synthroid have probably had a negative impact on it as well. Even the endo in the past mentioned it does a number on your bones at such a high dose etc. sigh, sigh.


----------



## angwill

Christine said:


> Oh, I definitely agree with the "if it ain't broke, don't fix it" mindset!!  For me, though, at times, it really does come down to money.  My health insurance charged a premium for Synthroid (as they do now for Tirosint).  For something that you have to take every day, every month, every year, the cost was really adding up for me when I had to figure it in with all my son's asthma medications.  If I could go from $70 every three months to $20 every three months with no impact to how I felt, then I was all for that!!!!



I have been fortunate to have the same experience with Synthroid and Levothyroxin and them both effecting me the exact same over the last 20+ years.  I switched from Synthroid to Levothyroxin when I lost a job and the difference in cost was over $100 for a 3 month supply.  I did the switch another time back to Synthroid and then back to Levo for I forget what reason and both times the dose was the same for me on both and I had none of the  issues that I have always heard there being between Synthroid and the Levo's. I just assumed I was lucky. 

I do have my first ultrasound on my thyroid coming up next Tuesday.  Can anyone explain what they do?  Do I have to not eat before or drink anything funky at the hospital?  I have been told nothing about preping for it.  I don't even know why my doctor wants one done other than I never had one done.  She has not even felt my thyroid so she didn't feel anything on it.


----------



## SingingMom

angwill said:


> I have been fortunate to have the same experience with Synthroid and Levothyroxin and them both effecting me the exact same over the last 20+ years.  I switched from Synthroid to Levothyroxin when I lost a job and the difference in cost was over $100 for a 3 month supply.  I did the switch another time back to Synthroid and then back to Levo for I forget what reason and both times the dose was the same for me on both and I had none of the  issues that I have always heard there being between Synthroid and the Levo's. I just assumed I was lucky.
> 
> I do have my first ultrasound on my thyroid coming up next Tuesday.  Can anyone explain what they do?  Do I have to not eat before or drink anything funky at the hospital?  I have been told nothing about preping for it.  I don't even know why my doctor wants one done other than I never had one done.  She has not even felt my thyroid so she didn't feel anything on it.



No prep for a thyroid ultrasound for me.  I had one done last year, when I changed endocrinologists. Since she wasn't my original doctor, she wanted a baseline for her own files. Of course, I haven't had a thyroid for 21 years, so it sort of amused me.  Lol

My "treatment plan" was different 21 years ago than what they would supposedly follow now. My original endo was a saint, treated me like a partner in the journey, and respected my opinions. Loved him.  He left private practice for research (what a loss for those who had one-on-one care from him) and referred me to a colleague. Stayed with her 10+ years and hated her.  (How stupid of ME, but the practice was supposedly " the best" in the area. @@). She couldn't get over how I was not treated the way "we do it now" and really caused me a lot of angst. 

Finally I found this other group. My current endo did also say, " Hmm, protocol is different now..." But she did not berate me or insist on unnecessary tests and procedures.  I like her very much, but no one will ever be like that original doctor!

The ultrasound consisted of lying on a table and having the tech scan your neck.  The only "discomfort" was laying flat with no pillow, or with the pillow under your neck, not your head.  I like my head elevated - normally sleep with 3 or 4 pillows! Lol.   The other annoyance is not swallowing when some one says "don't swallow". Lol of COURSE, that's when I need to swallow!  ::tee hee::

Seriously though, the ultrasound doesn't take long and it is pain- free.  Good luck!

"SingingMom" ....Sent from my iPad using DISBoards


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## bellanotte10

Yeah like singingmom said, no prep necessary. It took me 10 minutes for the test and longer to get the goo off.  Not bad at all!


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## angwill

Thanks for the info.  Since I now know there will be goo involved I will have to bring a hair tie.  Blech!!! lol  It sounds simple and painless and of course I am going to be wanting to swallow when told not to as well. lol


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## luvmarypoppins

singing mom -   when I read that you sleep with 3 or 4 pillows.

I sleep with 3 and if they get off center or off the position I put them in, I feel like I am choking etc.

I am thinking that is because of the neck dissection? Micayla care to chime in on this since you have a dissection too?

Anyone else use 3 or 4 pillows?


----------



## bellanotte10

angwill said:


> Thanks for the info.  Since I now know there will be goo involved I will have to bring a hair tie.  Blech!!! lol  It sounds simple and painless and of course I am going to be wanting to swallow when told not to as well. lol



Yes! And if your hair is long, get as much away as possible from your neck. like a floppy messy bun that can be squished w/o pain. That's where I ran I to goo removal issues. 

My hair at the time was pulled back in a high ponytail and still reached about mid back. Nurse asked a question while i was about to clean up and I turned my head to answer only to get a bunch of hair stuck in the goo on my neck  bad timing


----------



## SingingMom

luvmarypoppins said:


> singing mom -   when I read that you sleep with 3 or 4 pillows.
> 
> I sleep with 3 and if they get off center or off the position I put them in, I feel like I am choking etc.
> 
> I am thinking that is because of the neck dissection? Micayla care to chime in on this since you have a dissection too?
> 
> Anyone else use 3 or 4 pillows?



I like to sleep in a pile of mushy feather pillows!  But, I did not have a dissection, just total thyroidectomy with some additional lymph nodes removal. 

Every once in a while I do feel like I am choking if I lie flat. But I attribute it to post nasal drip.  Every once in a while I do feel chokey while I sing. (I teach elementary school music & am a leader of song in church)

"SingingMom" ....Sent from my iPad using DISBoards


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## itsdisneytime

Well, where else do you go when your feeling low ... but to the DIS of course.   Some of you may remember me, Ive leaned on this thread before for great advise.     Ill refresh your memory for my sake of needing help thus again.      I had total thyroidectomy (sp) July 2009.   Followed by a pill form of radiation and isolation due to that for 10 days.    Ive been on Synthroid of course since then (but I take the generic form)  seem to have had no issues according to blood work ((some of you know the terms better but the generalized blood work they follow looked good)) ... Last year I had thyrogen?  shots (2) and then a blood work that showed fine *praise god* ....    and they were just fine with that.      My doctor retired and his recommended doctor that took over my case within the practice just met with me last week and ordered a ultrasound scan.   I had my scan Friday and the doctor saw 2 enlarged lymph nodes one on the right side and one on the left side of my neck.       I was asked if Ive had any recent illnesses to which i said no, ... any dental work ... to which i said yes, so they opted to measure the lymph nodes and do a repeat in 3 weeks and at which time if there is no change or they grow, i will then have to get a biopsy.    I am scared to DEATH.    has anyone else been through this?


----------



## luvmarypoppins

itsdisneytime said:


> Well, where else do you go when your feeling low ... but to the DIS of course.   Some of you may remember me, Ive leaned on this thread before for great advise.     Ill refresh your memory for my sake of needing help thus again.      I had total thyroidectomy (sp) July 2009.   Followed by a pill form of radiation and isolation due to that for 10 days.    Ive been on Synthroid of course since then (but I take the generic form)  seem to have had no issues according to blood work ((some of you know the terms better but the generalized blood work they follow looked good)) ... Last year I had thyrogen?  shots (2) and then a blood work that showed fine *praise god* ....    and they were just fine with that.      My doctor retired and his recommended doctor that took over my case within the practice just met with me last week and ordered a ultrasound scan.   I had my scan Friday and the doctor saw 2 enlarged lymph nodes one on the right side and one on the left side of my neck.       I was asked if Ive had any recent illnesses to which i said no, ... any dental work ... to which i said yes, so they opted to measure the lymph nodes and do a repeat in 3 weeks and at which time if there is no change or they grow, i will then have to get a biopsy.    I am scared to DEATH.    has anyone else been through this?



I cant remember but didnt you also have the external beam radiation? Did they take out any lymph nodes during your initial thyroidectomy.

You neck has about 200 lymph nodes, so about 50 in each of the 4 quadrants. I had basically my whole L front quadrant removed, about 50 during my neck dissection.

I did have a swollen lymph node that was at level 2 I think. Cant remember. this was about 2 years after the total thyroidectomy. I cant remember. But it turned out to be an infected lymph node. But I had it accompanied by itchy skin too. 

I am glad they are wanting to do a biopsy. Sometimes you have to get more rai.

But if you have already had rai and then the external beam and now you are having more lymph nodes, then maybe you are not rai avid anymore? Then maybe they could consider alcohol ablation. 

I cant remember, but also are you the poster who did not like your surgeon/dr? or was that the endo?

If that is you and that is the case, I also might want to seek a second opinion.

Wishing you all the best and keep us informed. Hang in there!


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## itsdisneytime

Hi Marypoppins -- they did not take out any lymph nodes during my surgery.  I did not like my surgeon.  My endo was supposedly the best in town and ive taken his referral as probably better than starting off fresh with someone else.  The reason I did not like my surgeon is because she really botched my surgery.  I went in thinking I was having one surgeon and then somehow ended up with a Navy Doctor (when i was at a civilian hospital and I have no military affiliation what so ever in any of my family what so ever) ...     I feel she was negligent during my surgery because she took what she thought was lymph nodes and sent them to be tested in path lab and they called back to o/r saying they were 2 parathyroid glands and they could not be reinserted so I am left with hypocalcimia (i take more calcium that 10 old ladies combined)  not only that but she had sewn me up and somehow they realized that I was bleeding internally and they had to reopen me to find that she had cut a vein.   My surgery was supposed to take 3 maybe 4 hours and i was supposed to go home that night or the next day.  Instead the surgery was 9 hours and I was in the hospital 11 days following.     I ONLY did a pill form of radiation.  I went to oncologist and the nuclear physicist there had me swallow a pill that was radiation in some form.   I was told to drive straight to isolation and given a card incase i was pulled over saying i was radioactive ... at "home aka isolation"  i was alone and told to use one set of utensils and to wash them in scalding hot water... to flush like 3 times after i went to the restroom ... to of course have no contact with anyone for 10 days .... i was batty.   I was depressed ...    but I was grateful to be alive but soon I would have to remind myself daily that its not good to hate ... because I could easily "hate"  the doctor who left me with this calcium condition.     sorry  I am normally very passive . I think my nerves are getting the best of me, plus talking about a buried memory stinks a bit.  Thanks for your speedy reply. Had I remembered how dedicated you were to this thread, I would have hopped on the computer iso your reply sooner <3


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## SingingMom

itsdisneytime said:


> Hi Marypoppins -- they did not take out any lymph nodes during my surgery.  I did not like my surgeon.  My endo was supposedly the best in town and ive taken his referral as probably better than starting off fresh with someone else.  The reason I did not like my surgeon is because she really botched my surgery.  I went in thinking I was having one surgeon and then somehow ended up with a Navy Doctor (when i was at a civilian hospital and I have no military affiliation what so ever in any of my family what so ever) ...     I feel she was negligent during my surgery because she took what she thought was lymph nodes and sent them to be tested in path lab and they called back to o/r saying they were 2 parathyroid glands and they could not be reinserted so I am left with hypocalcimia (i take more calcium that 10 old ladies combined)  not only that but she had sewn me up and somehow they realized that I was bleeding internally and they had to reopen me to find that she had cut a vein.   My surgery was supposed to take 3 maybe 4 hours and i was supposed to go home that night or the next day.  Instead the surgery was 9 hours and I was in the hospital 11 days following.     I ONLY did a pill form of radiation.  I went to oncologist and the nuclear physicist there had me swallow a pill that was radiation in some form.   I was told to drive straight to isolation and given a card incase i was pulled over saying i was radioactive ... at "home aka isolation"  i was alone and told to use one set of utensils and to wash them in scalding hot water... to flush like 3 times after i went to the restroom ... to of course have no contact with anyone for 10 days .... i was batty.   I was depressed ...    but I was grateful to be alive but soon I would have to remind myself daily that its not good to hate ... because I could easily "hate"  the doctor who left me with this calcium condition.     sorry  I am normally very passive . I think my nerves are getting the best of me, plus talking about a buried memory stinks a bit.  Thanks for your speedy reply. Had I remembered how dedicated you were to this thread, I would have hopped on the computer iso your reply sooner <3



Oh Shannon!  (((Hugs))). What a terrible experience you had!  
I remember the radiologist being real flippant about isolation.  This was in the hospital, not at home, isolation.  "Oh, they leave your meals at the door and your husband can wave from the window."    Couldn't fathom why I didn't want to go through that when my reports came back that it really wasn't necessary.  @@

Good luck to you!

"SingingMom" ....Sent from my iPad using DISBoards


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## itsdisneytime

SingingMom ... Im sorry that you had to go through that as well ... I am guilty in saying that I am relieved to know someone else that thought isolation was horrible.  I swear, so many people I know act as if it would be a mini vacation, but, it was like I was in punishment.   Maybe one of the days was okay to get caught up on senseless t.v.  --- i wasn't prepared and didn't think through what it would really mean to be "alone" for 10 days.   I actually stayed at my mothers house while they all took a vacation to be away from me during that time.   My husband stayed home at our house in case of emergency (which is right next door to my Greek Mother) aye!  If I need to go through that again, I will make sure to be better prepared and have a lot of "tasks" to complete.


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## SingingMom

itsdisneytime said:


> SingingMom ... Im sorry that you had to go through that as well ... I am guilty in saying that I am relieved to know someone else that thought isolation was horrible.  I swear, so many people I know act as if it would be a mini vacation, but, it was like I was in punishment.   Maybe one of the days was okay to get caught up on senseless t.v.  --- i wasn't prepared and didn't think through what it would really mean to be "alone" for 10 days.   I actually stayed at my mothers house while they all took a vacation to be away from me during that time.   My husband stayed home at our house in case of emergency (which is right next door to my Greek Mother) aye!  If I need to go through that again, I will make sure to be better prepared and have a lot of "tasks" to complete.



Shannon - I actually didn't go through the isolation !  My levels came back just over the limit.  The radiologist said they wanted to do it "just as an insurance policy" @@. We had lost one pregnancy before my diagnosis and decided we would try to get pregnant again.  After a lot of research and thought, I said no to the radioactive iodine. Our feeling was, if the side effects were so bad that you had to be in isolation for over a week, how could that possibly be ok for your own body - ie: ovaries, etc.  My endocrinologist was in agreement with our decision and reasoning.  The radiologist was LIVID that I disagreed with his suggestion. Rude, arrogant man.

If my levels dictated having the treatment I would have gone through it. But to have radioactive iodine as an "insurance policy" for the radiologist just didn't make sense to me.  I knew I would be under doctor's care for the rest of my life and if my levels increased, then I would have the treatment. And, if my endocrinologist told me I was wrong to refuse the treatment, then I would have followed his advice.

ps - surgery was in Feb, got pregnant in November, beautiful healthy baby girl born in August.  That little girl turns 20 this summer and on her way to study in London next semester. My levels have stayed fine. Praise The Lord. ;-)

Keep the faith. Follow advice from your doctors, but be your own advocate also.

"SingingMom" ....Sent from my iPad using DISBoards


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## luvmarypoppins

Shannon - sorry about your isolation experience. My dh worked  with it so he knew all the rules.

I stayed in the hosp. the first night. My rad. onc. said hardly anyone did that. Well I had a draining stomach wound from my other surgery so I didnt know what would happen, so we wanted it play it safe the first night.

My family stayed with me the whole time.  Dh stayed in the living room with me and his distance was 10 feet and I used the rubber gloves for the computer and tv controller.

I washed all my dishes in the bathroom sink because they were using the kitchen. Dh slept on the couch and used our 2nd bathroom.

My ds were in college/high school. They passed me going out the door each day and dh just gave me the food and left away from me.

I couldnt imagine being totally alone all during the time. I dont know what info. you got. Seems a little extreme. 

Hoping you get good result from your testing. Hang in there!


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## Christine

luvmarypoppins said:


> Shannon - sorry about your isolation experience. My dh worked  with it so he knew all the rules.
> 
> I stayed in the hosp. the first night. My rad. onc. said hardly anyone did that. Well I had a draining stomach wound from my other surgery so I didnt know what would happen, so we wanted it play it safe the first night.
> 
> My family stayed with me the whole time.  Dh stayed in the living room with me and his distance was 10 feet and I used the rubber gloves for the computer and tv controller.
> 
> I washed all my dishes in the bathroom sink because they were using the kitchen. Dh slept on the couch and used our 2nd bathroom.
> 
> My ds were in college/high school. They passed me going out the door each day and dh just gave me the food and left away from me.
> 
> I couldnt imagine being totally alone all during the time. I dont know what info. you got. Seems a little extreme.
> 
> Hoping you get good result from your testing. Hang in there!



I think the warnings she got were extreme too.  Both of my RAI treatments were done in the hospital because, at the time, that was the law in the state of Virginia.  I had to stay in until my Geiger Counter drop to a certain level.  One time I stayed one night and the other time I had to stay two nights.  

After that I was "good" to be 6 feet away from the family and I just used a separate bathroom for a few days.


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## SingingMom

Christine said:


> I think the warnings she got were extreme too.  Both of my RAI treatments were done in the hospital because, at the time, that was the law in the state of Virginia.  I had to stay in until my Geiger Counter drop to a certain level.  One time I stayed one night and the other time I had to stay two nights.
> 
> After that I was "good" to be 6 feet away from the family and I just used a separate bathroom for a few days.



One or two nights sounds doable -by no means great, but you know what I mean.    In my situation, I was told an entire week - at least 7 days.  That factored into my decision. This was the day when you had to be off your synthroid to have the full body scan and I was a mess. The idea of sitting in the hospital alone for a week, on top of my main concerns, was just too much to handle. I remember going to see my endocrinologist directly from the unpleasant scene with the radiologist. I took my sunglasses off and he blurted out, very uncharacteristically,  "oh my!  You look like hell!!!"   Lol
 I am glad to hear you no longer have to be off meds for two weeks before that scan!

"SingingMom" ....Sent from my iPad using DISBoards


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## Christine

SingingMom said:


> One or two nights sounds doable -by no means great, but you know what I mean.    In my situation, I was told an entire week - at least 7 days.  That factored into my decision. This was the day when you had to be off your synthroid to have the full body scan and I was a mess. The idea of sitting in the hospital alone for a week, on top of my main concerns, was just too much to handle. I remember going to see my endocrinologist directly from the unpleasant scene with the radiologist. I took my sunglasses off and he blurted out, very uncharacteristically,  "oh my!  You look like hell!!!"   Lol
> I am glad to hear you no longer have to be off meds for two weeks before that scan!
> 
> "SingingMom" ....Sent from my iPad using DISBoards



Yes, my treatment was back in 1995 and I had to do the withdrawal scans/treatment.  By the time I got to the hospital for RAI, my TSH was at 168 and I was starting to have kidney and liver function issues.  After the dose of 150 mci, the shoved sour candies and all sorts of fruit in my face.  Sometime in the middle of the night I felt really "odd".  I can to call the nurses in and tell them I thought I was dying.  I was having some weird blood sugar crash (probably from all the sweets and my body not working right) and they all got so freaked out.  It was scariest thing I had ever been through and I felt so alone.

Way back then, each state had it's own regulations (probably still do) about when you could be let out on the street after RAI.  My radiologist knew that most people got out in 1-2 days.  Whatever your state was doing at the time could have been very strict, hence, the possibility of seven days.


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## SingingMom

Christine said:


> Yes, my treatment was back in 1995 and I had to do the withdrawal scans/treatment.  By the time I got to the hospital for RAI, my TSH was at 168 and I was starting to have kidney and liver function issues.  After the dose of 150 mci, the shoved sour candies and all sorts of fruit in my face.  Sometime in the middle of the night I felt really "odd".  I can to call the nurses in and tell them I thought I was dying.  I was having some weird blood sugar crash (probably from all the sweets and my body not working right) and they all got so freaked out.  It was scariest thing I had ever been through and I felt so alone.
> 
> Way back then, each state had it's own regulations (probably still do) about when you could be let out on the street after RAI.  My radiologist knew that most people got out in 1-2 days.  Whatever your state was doing at the time could have been very strict, hence, the possibility of seven days.



Oh boy!  I cringe when I think of you having kidney & liver function issues!!  I remember being so proud of myself throughout my entire ordeal that I never  looked like I was ill.   Then, one day during the withdrawal of the meds before my scan, I was walking up the street to go shopping and the aches in my legs were excruciating.  I came home and burst into tears, telling my husband, " Anyone passing me on the street probably thought - oh,that poor young woman is dying!"  :-(
Silly thought maybe, but when you are 29, that is not how you expect to feel!

"SingingMom" ....Sent from my iPad using DISBoards


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## Christine

SingingMom said:


> Oh boy!  I cringe when I think of you having kidney & liver function issues!!  I remember being so proud of myself throughout my entire ordeal that I never  looked like I was ill.   Then, one day during the withdrawal of the meds before my scan, I was walking up the street to go shopping and the aches in my legs were excruciating.  I came home and burst into tears, telling my husband, " Anyone passing me on the street probably thought - oh,that poor young woman is dying!"  :-(
> Silly thought maybe, but when you are 29, that is not how you expect to feel!
> 
> "SingingMom" ....Sent from my iPad using DISBoards



You've got me reminiscing about the old days!!  I was around 31/32 when all that was happening.  I was another one that never looked/sounded ill during the whole.  To the point that when I showed up for my pre-scan bloodwork the radiology tech told me that she doubted I would be ready because I looked too good.  She was shocked when I was at 145 TSH.  I understand what she meant because a man in my office was going through it all and he had been off his meds for, maybe, three weeks and he looked awful.  Swollen face and very hoarse voice.  

I do remember each time I went through it I got really bad carpal tunnel in my wrist and my calves use to hurt.  My vision would get all weird too.   Yet, I looked great.


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## luvmarypoppins

After reading your stories I am so glad that I never had to do the withdrawl. Well I did here the onc nurse say, oh you are getting thyrogen. Hm, we usually save this for the old people. Guess I was under that category.

Honestly in the 6 weeks between the surgery and the rai I had:
Had 15 minutes to live
Been in the coma for 2 days
Lost 7 pints of blood
Had 9 inches of my colon resected
Developed some kind of infection for the unhealed wound
Had an n/g tube in me for about 5 days and no food allowed
Lost 40 lbs.

Then I got to cook all the wonderful food for myself before the rai etc.

My dh even said I looked like death warmed over. I guess the dr didnt want to say it to me too.

Oh and i did hear the way to get to stay in the hospital after the rai is to have the rad. onc. right on your report to the insurance company when they do the pre approval of it is that you cannot comply at home for whatever the reason. I dont know if she stated one for me. I was glad to stay there, believe me with all I went through. One less day of cooking for me etc. The food was terrible anyway. I longed for some soup etc. 

Ah, those were the days, not!  Pardon my warped sense of thy ca humor.


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## bellanotte10

Hey guys! Looks like I'll probably bowing out of this thread! My new doctor thinks it's an autoimmune disease and I'm being sent to a rheumatologist. (Funny story, she actually had the office call me to make sure I made the appt)  If that doesnt work then I'm going to an endo. Thanks for all your help! I appreciate it!!!


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## angwill

OK, I have had hypothyroidism for almost 20 years now and my TSH levels have been regulated by Levothyroxine.  I only had one issue with the levels when I was taking a multivitamin with iron many years ago.  I started seeing a new doctor recently who wanted all kinds of stuff done I never had done. Thyroid antibody and a TSH receptor test as well as an ultrasound of my thyroid.  Well I got the news from the doctors nurse that I have a large mass on the right side of my thyroid and she stupidly chose to tell me it most likely is cancerous because of the size and only being on one side.  I guess she has ESP because no biopsy was done. The other tests were sent to Mayo clinic and didn't come back yet.  

Anyway, now the doctor wants an uptake scan done and I am wondering why they wouldn't just want a biopsy since the scan isn't going to tell if it is cancer or not.  I also have a nurse friend who had the same scan the same day as me and has a nodule her doctor just ordered a biopsy of.  

I have not read back too much to see if anyone else has been through this recently and has any encouragment, stories etc. for me.  What can I expect?  I was not even told if I needed to stop any meds or anything just to call the hospital to set up the uptake scan.  I plan to call tomorrow and ask to go straight to biopsy. Has anyone done the uptake scam before biopsy with a large mass on one side of their thyroid?  

Thanks,
Ang


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## mrsklamc

Yes, and if I had it to do over again I would insist on knowing the answer to your question before I had it done. I am concerned that it may have negatively affected the uptake of my RAI.


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## Christine

I had an uptake scan.  They did that many years ago to ascertain if the nodule I had was hot or cold.  Cold likely means cancerous but it doesn't tell the whole story.  It does put RAI into your gland.  If you do end up having cancer, surgery, and then RAI for treatment, the previous administration of the uptake RAI could influence your treatment dose.  As long as they are a good 6 months apart, you should be okay.

Don't freak over the size.  Sheesh, NURSES!!!  I've know quite a few people with massive nodules who did not have thyroid cancer.


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## angwill

Still waiting for a call back from doctors nurse about biopsy instead of uptake scan and waiting to see if they can call and get the other test results.  I would rather get the biopsy and whatever else started now vs having to wait 6 months.

Christine, Thanks for the info and I am not really sweating it about the size of the mass till a biopsy is done first.  I was more upset that she wouldn't just word it that they are concerned about cancer instead of saying it most likely is cancer.  I think she is a new nurse.  If it is a simple mass do they have to remove it?


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## Christine

angwill said:


> Still waiting for a call back from doctors nurse about biopsy instead of uptake scan and waiting to see if they can call and get the other test results.  I would rather get the biopsy and whatever else started now vs having to wait 6 months.
> 
> Christine, Thanks for the info and I am not really sweating it about the size of the mass till a biopsy is done first.  I was more upset that she wouldn't just word it that they are concerned about cancer instead of saying it most likely is cancer.  I think she is a new nurse.  If it is a simple mass do they have to remove it?



No, they don't have to remove it; however, there's a few things you need to be aware of.

First, these things tend to grow and if it grows it will eventually impact your trachea, eshopagus, and throat.  You don't want to wait until this thing grows and wraps all around in your neck and it becomes a major surgery to remove it.  It happens.  My cousin's was 9 cm and extending down into his throat.  It was benign but not a fun surgery.  

Second, thyroid cancer is not like most other cancers (such as breast cancer) where the lump or mass will contain all cancer cells.  You could have a mass of tissue that will generally be normal thyroid tissue mixed with abnormal cells (cancerous or not).  The person doing your biopsy is going to be taking a few samples.  They won't be able to sample the entire mass.  With a thyroid biopsy it's fairly rare to get a result back that is "YOU DON'T HAVE CANCER."  The only real way to get that is if you have a small lump and they get a very good set of samples.

Otherwise, you are going to get a reading of inconclusive or cancer.  

It's going to be up to you as to whether you want to live with an "inconclusive" biopsy.  

Again, the uptake scan will give you an idea of how the mass is operating.  If it is warm or hot, it is less likely to be malignant.  If you add that bit of information to an inconclusive biopsy then you have two data points to gamble with.  If you have a cold/non-functioning nodule and an inconclusive biopsy you might not rest as easy.


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## angwill

Christine said:


> No, they don't have to remove it; however, there's a few things you need to be aware of.
> 
> First, these things tend to grow and if it grows it will eventually impact your trachea, eshopagus, and throat.  You don't want to wait until this thing grows and wraps all around in your neck and it becomes a major surgery to remove it.  It happens.  My cousin's was 9 cm and extending down into his throat.  It was benign but not a fun surgery.
> 
> Second, thyroid cancer is not like most other cancers (such as breast cancer) where the lump or mass will contain all cancer cells.  You could have a mass of tissue that will generally be normal thyroid tissue mixed with abnormal cells (cancerous or not).  The person doing your biopsy is going to be taking a few samples.  They won't be able to sample the entire mass.  With a thyroid biopsy it's fairly rare to get a result back that is "YOU DON'T HAVE CANCER."  The only real way to get that is if you have a small lump and they get a very good set of samples.
> 
> Otherwise, you are going to get a reading of inconclusive or cancer.
> 
> It's going to be up to you as to whether you want to live with an "inconclusive" biopsy.
> 
> Again, the uptake scan will give you an idea of how the mass is operating.  If it is warm or hot, it is less likely to be malignant.  If you add that bit of information to an inconclusive biopsy then you have two data points to gamble with.  If you have a cold/non-functioning nodule and an inconclusive biopsy you might not rest as easy.



It almost sounds like the best route for me would be removal and testing. I just hate to waste money on tests that can just be inconclusive when eventually the mass will have to be removed anyway.  I assume removal will be the only way to tell for sure if there is any cancer in it?

I am still not sure if mine is fluid filled or solid.  I wonder if it is fluid filled do they just drain it?

Just got phone call back from doctors nurse with no answer about the mass type or size just that I must follow her protocol one step at a time and uptake scan is next.  I am about to say screw it and find a new doctor.  She is playing games with my thyroid meds that I have to call and ask her to call in a 30 day supply each month unless I play by her orders too and it is BS.  I told her nurse I am about to ask for a new doctor.  I have a feeling this doctor is going to tell me to find a specialist and dismiss me anyway.


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## Christine

angwill said:


> It almost sounds like the best route for me would be removal and testing. I just hate to waste money on tests that can just be inconclusive when eventually the mass will have to be removed anyway.  I assume removal will be the only way to tell for sure if there is any cancer in it?
> 
> I am still not sure if mine is fluid filled or solid.  I wonder if it is fluid filled do they just drain it?
> 
> Just got phone call back from doctors nurse with no answer about the mass type or size just that I must follow her protocol one step at a time and uptake scan is next.  I am about to say screw it and find a new doctor.  She is playing games with my thyroid meds that I have to call and ask her to call in a 30 day supply each month unless I play by her orders too and it is BS.  I told her nurse I am about to ask for a new doctor.  I have a feeling this doctor is going to tell me to find a specialist and dismiss me anyway.



Every area runs a little differently.  When I was going through my stuff, I just got referred out to a head/neck surgeon.  He was the one that discussed whether or not to do a biopsy or just go for surgery (although my GP was the one who did the uptake scan, ultrasound, etc prior to even getting to the surgeon).  You could just opt to go directly to a surgeon, depending on how your insurance works.  The other thing you could do is just go through it all and take a wait and see approach to see if your large mass is getting larger.  Maybe it won't.

But to answer your question, the only way to get a conclusive biopsy is to either get lucky during the biopsy and hit a cancerous spot or to have mass removed and have it undergo full pathology.


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## angwill

Christine said:


> Every area runs a little differently.  When I was going through my stuff, I just got referred out to a head/neck surgeon.  He was the one that discussed whether or not to do a biopsy or just go for surgery (although my GP was the one who did the uptake scan, ultrasound, etc prior to even getting to the surgeon).  You could just opt to go directly to a surgeon, depending on how your insurance works.  The other thing you could do is just go through it all and take a wait and see approach to see if your large mass is getting larger.  Maybe it won't.
> 
> But to answer your question, the only way to get a conclusive biopsy is to either get lucky during the biopsy and hit a cancerous spot or to have mass removed and have it undergo full pathology.



Thanks.  Problem is DH is self employed and I lost my job and have not been able to find a new one.  I have no insurance and sadly when I looked into private insurance plans I was deemed uninsurable.  I have a feeling I am not going to find a surgeon that will take a cash payer without cash up front.  I really am not sure where or how to turn at this point.   I have a funny feeling current doctor is looking for a reason to give me the boot and tell me find someone else to call in my thyroid meds too.  It scares me that I may be medless.


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## luvmarypoppins

angwill said:


> Thanks.  Problem is DH is self employed and I lost my job and have not been able to find a new one.  I have no insurance and sadly when I looked into private insurance plans I was deemed uninsurable.  I have a feeling I am not going to find a surgeon that will take a cash payer without cash up front.  I really am not sure where or how to turn at this point.   I have a funny feeling current doctor is looking for a reason to give me the boot and tell me find someone else to call in my thyroid meds too.  It scares me that I may be medless.



Do you live anywhere near a university hospital? They get money from your state too so they may be able to help you.

Also where they send your fna sample matters too. I have had ones done that were sent out and took forever to get back. The one place was out of network and they were saying they werent going to pay for it or at a greatly reduced rate for me I argued and told them I had no choice etc. So they processed it as in network.

But the last biopsy I had was done right at the uni. hosp. and sent to their pathology dept. and it came back fast.

They even have onsite social workers that can help you with financial aspects of your care. 

I would maybe call your local hosp. social worker and see what programs are available for you in your area.

Best of luck to you.   What ins. programs does your state have that you may qualify for? Ours has one but they have a $5,000 deductible. If you need surgery etc. it might be something worth considering. 

I am sure your head is spinning.  Hang in there!


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## luvmarypoppins

Well today I went to the radiation oncologist. 

She was happy with all my blood tests and looked at the ct results about the nodule in my lung. She doesnt think that was thyroid cancer because its getting smaller.

She agrees with what the endo is doing 6 months sono and blood tests.

I asked her about the scan next year and she said based on the new protocol its only blood tests most importantly and if there is a number rise then they will scan you.

So no scan for me and I see her next year. God is good!


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## angwill

luvmarypoppins,

That is wonderful that you are at the end of your battle.  Congratulations on the good news!!!  

Thanks for the advice.  I have been making calls to see what it available since we do have a state university and hour away from us.  So far it seems that the hospital can help depending on income for any testing, scans etc. but doctor bills are not covered at all.  I think it is wonderful that they offer anything.  

Sadly, today another nurse from the doctors office called and I told her that I talked to scheduling at the hospital and am extremely frightened of getting radiation through and IV and can not even begin to think how hard 4 weeks off thyroid meds will be.  I also said I would rather just have the thing removed and get it over with.  I asked if I could go straight to biopsy or removal and she said no you either do it the way the doctor says or she won't see you again for anything.  I asked for a referal to a surgeon and she said they will not help me with that.  I then asked how much thyroid and blood pressure meds (she just prescribed me a week ago and is only up in her office) she would call in till I found another doctor and I was told none I was on my own.  So more phone calls tomorrow to find another doctor or surgeon I guess.  

Your right my head was spinning from the first call when I was told you have a large mass and it's most likely cancer.  Now it is spinning more because I can not believe that a clinic can be run like this one.  I am hoping my getting booted is a blessing in disguise and that I can find a wonderful doctor who will work with me having no insurance.


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## luvmarypoppins

angwill - I think generic thyroid meds are cheap.

What about your bp meds? I take 2 of those. 1 is generic and pretty cheap The other one is really expensive. There is no generic for it right now and they cant substitute anything else for me because they already tried several types of bp meds with me. Some gave me   side effects and some dont even do anything for me. So 2 doctors consulted and came up with the 2nd new one I am on now. The lst one I have been   years.

That is why I mentioned a univ. hosp. They get money from your state I am sure and have to help those with financial needs. Ours even has a big sign etc. I would def. look into going to an ent or endo at a hospital there. I think they tend to take the path of least resistance so to speak. Like get it done and over with etc. They probably see a great volume of patients. I know at mine sometimes you have to wait 2 months just to get an initial visit etc. 

If you need meds right away, could you go to an urgent care type place. Would they give it to you there? 

Hang in there! Wishing you all the best. Remember, you are your best advocate!


----------



## angwill

Yes, thankfully my meds are both on Walmart $4/$10 list.  My BP is basically a diuretic.  The issue is I can not get them without a doctor giving a prescription and she is not willing to call them in till I shut up and do exactly as she says without question.  There is no way my BP is going down now anyway because it was only high in the doctors office and now with feeling so stressed it is up at home too.  She just put me on them in the last couple weeks

Since our university does not have a medical program only nursing there are no medical students only nursing that I know of so no help with doctor charges.  I will try and find an endo or ent.  I did find a surgeon willing to take me but I need cash up front for him and I am sure I will need for the others too.  I think I do have a plan on going to another clinic to see a PA there to get the meds till I work things out.

Thanks for the kind words.  I don't feel like my own best advocate with everyone trying to tell me to shut up and do what I am told.  I was a stubborn child and I am a stubborn adult and I want to understand why and ask questions and the doctor obviously doesn't like it and forces those under her to do her dirty work.  Oh and I finally got an answer as to how big my mass is and it is basically 3cm round average, a bit smaller and a bit bigger on each side.  They said the uptake scan would tell if it is liquid or solid.

How bad is an uptake scan.  I got too anxious after talking to scheduling and being told off meds for 4 weejs then it is done over 2 days with an IV of radiation the first morning then a scan 4 hours later and then drive the hour back the next day for the second scan.  I didn't hear much after that.    



luvmarypoppins said:


> angwill - I think generic thyroid meds are cheap.
> 
> What about your bp meds? I take 2 of those. 1 is generic and pretty cheap The other one is really expensive. There is no generic for it right now and they cant substitute anything else for me because they already tried several types of bp meds with me. Some gave me   side effects and some dont even do anything for me. So 2 doctors consulted and came up with the 2nd new one I am on now. The lst one I have been   years.
> 
> That is why I mentioned a univ. hosp. They get money from your state I am sure and have to help those with financial needs. Ours even has a big sign etc. I would def. look into going to an ent or endo at a hospital there. I think they tend to take the path of least resistance so to speak. Like get it done and over with etc. They probably see a great volume of patients. I know at mine sometimes you have to wait 2 months just to get an initial visit etc.
> 
> If you need meds right away, could you go to an urgent care type place. Would they give it to you there?
> 
> Hang in there! Wishing you all the best. Remember, you are your best advocate!


----------



## luvmarypoppins

Sorry I didnt have an uptake scan. 

I had sono, ct scan, pet scan and then the fnas and then the core biopsy. The pet scan already showed mine was cancer. I had 2 tumors. The huge one was 12.5 centimeters and the little one that was causing me so much pain and they had to cut the nerve on that one and that is when I almost died too was on the left side and that was 4 centimeters. 

Micayla said she had that scan I think, Oh Micayla where are you???

Oh Micayla, I am still praying for you on your journey.

Christine - did you see that I read my 4th book? I am about halfway done with the next one. Read it on the plane to disney.


----------



## Christine

luvmarypoppins said:


> Sorry I didnt have an uptake scan.
> 
> I had sono, ct scan, pet scan and then the fnas and then the core biopsy. The pet scan already showed mine was cancer. I had 2 tumors. The huge one was 12.5 centimeters and the little one that was causing me so much pain and they had to cut the nerve on that one and that is when I almost died too was on the left side and that was 4 centimeters.
> 
> Micayla said she had that scan I think, Oh Micayla where are you???
> 
> Oh Micayla, I am still praying for you on your journey.
> 
> Christine - did you see that I read my 4th book? I am about halfway done with the next one. Read it on the plane to disney.



The RAI for my uptake scan was in pill form so I don't understand the IV thing.

luvmarypoppins--I must have missed your post on the book thread.  That thread is so large that I swear I miss things on it!


----------



## mrsklamc

Sorry, I am here!! I've been very busy lately, and I don't always get notified that someone has posted. 

Now I am wondering if I am not remembering correctly- I thought my first iodine test wasn't actually radioactive  ...IIRC, they put iodine in an IV and I just felt warmth spreading through my body, but it wasn't bad at all.


----------



## luvmarypoppins

mrsklamc said:


> Sorry, I am here!! I've been very busy lately, and I don't always get notified that someone has posted.
> 
> Now I am wondering if I am not remembering correctly- I thought my first iodine test wasn't actually radioactive  ...IIRC, they put iodine in an IV and I just felt warmth spreading through my body, but it wasn't bad at all.



was it ct with the contrast? 

I know after my thyroidectomy I was screaming at them not to do anything on me with contrast when I had the bowel obstruction Good I couldnt swallow the stuff as I would just have puked it up. They did a ct with no contrast and I even told the surgeon dont even scrub my body down with betadine etc. I think he said he would use something else.

I hope you are busy in a good way Micayla. Wishing you all the best always.


----------



## angwill

CT scan can use iodine I had one of those years ago on my abdomen.  That wasn't hard except the warmth made me think I peed myself. lol  Then there is nuclear medicine that uses the radioactive material with the CT scan. I was told I needed 4 weeks off thyroid meds, IV with radiation which scares me, 2 days of scans and something about diet but my head was dizzy by that point and I told them I would have to call back to schedule.  I may be odd one out but who the heck though to put radiation in someones body and think that was cool?  That is where my thinking is.  

Today I did talk to the manager of the clinic and told her all that took place and she assured me the doctor could not refuse to fill my meds and was completely wrong in not calling me herself and not saying it is cancer without knowing for sure.  We decided to switch to their other location and completely different doctor.  She said she will personally get my records to her and ask her to go over them before my visit in a week and a half.  She said she feels I will find her much more personable and she will listen and take my feelings into consideration that my current doctor would not.  So hopefully all will go well there.  I am going to ask about the other scans like PET or what other alternatives I might have if not going straight to biopsy or surgery.  

Thanks so much everyone and may your health be good.


----------



## SingingMom

angwill said:


> CT scan can use iodine I had one of those years ago on my abdomen.  That wasn't hard except the warmth made me think I peed myself. lol  Then there is nuclear medicine that uses the radioactive material with the CT scan. I was told I needed 4 weeks off thyroid meds, IV with radiation which scares me, 2 days of scans and something about diet but my head was dizzy by that point and I told them I would have to call back to schedule.  I may be odd one out but who the heck though to put radiation in someones body and think that was cool?  That is where my thinking is.
> 
> Today I did talk to the manager of the clinic and told her all that took place and she assured me the doctor could not refuse to fill my meds and was completely wrong in not calling me herself and not saying it is cancer without knowing for sure.  We decided to switch to their other location and completely different doctor.  She said she will personally get my records to her and ask her to go over them before my visit in a week and a half.  She said she feels I will find her much more personable and she will listen and take my feelings into consideration that my current doctor would not.  So hopefully all will go well there.  I am going to ask about the other scans like PET or what other alternatives I might have if not going straight to biopsy or surgery.
> 
> Thanks so much everyone and may your health be good.



Good luck with the new doctor!  It sounds like it will be a better experience at the different location!  Hope it all turns out well for you!

Ps - I had a "CT Scan with Contrast" once and the tech was wonderful and warned me prior about the warm feeling and the sensation of urinating!  It was EXACTLY how he described!  I was SO thankful he prepared me!  What an odd feeling! Lol

"SingingMom" ....Sent from my iPad using DISBoards


----------



## angwill

SingingMom said:


> Good luck with the new doctor!  It sounds like it will be a better experience at the different location!  Hope it all turns out well for you!
> 
> Ps - I had a "CT Scan with Contrast" once and the tech was wonderful and warned me prior about the warm feeling and the sensation of urinating!  It was EXACTLY how he described!  I was SO thankful he prepared me!  What an odd feeling! Lol
> 
> "SingingMom" ....Sent from my iPad using DISBoards




Thanks.  I wish someone warned me because I had no clue and told the nurse I think I peed myself. I have no shame. lol It was an odd feeling.


----------



## luvmarypoppins

I guess this question is for those with thy ca over 5 years. When did you stop going to the oncologist? I just did my yearly visit for the 4 year mark. Next year will be 5.

I dont know if this is some protocol my hospital has or what. But I am thinking of asking the endo for how long do I have to keep seeing the oncologist, if she really doesnt do anything but just review the blood work and sono results. 

I honestly felt like this visit the other week was a waste of my $30. I could pay that to the endo and get better care, etc.

singing mom - thanks for answering my question on the swan thread. I dont care too much about the room view  but it would be nice to not have to look at something besides the roof. I think once we were looking at the air conditioning units on the roof. I cant remember if that was the Swan or Dolphin. 

Christine - I just won another book. Yeah for summer reading!

Micayla - Is it time for your annual trip to the berry farm? Yumm!

In the next 2 weeks I will make the sono appt. I guess. And I am just so looking forward to that


----------



## mrsklamc

Well...I actually went a few weeks ago...but the berries just didn't taste quite right.....Which I assume is because....I'm expecting!


----------



## luvmarypoppins

mrsklamc said:


> Well...I actually went a few weeks ago...but the berries just didn't taste quite right.....Which I assume is because....I'm expecting!





Congratulations! I am so, so happy for you. I have been praying for you!
Care to share any details? I dont want to be too nosy, so I understand if you dont want to.
Wishing you all the best always. and more


----------



## Christine

Hi everyone! 

Micayla--CONGRATS!!!!  You must be absolutely over the moon.  Please keep us posted on how things are going.

luvmarypoppins--I never did see an oncologist so I can't help you on that one.  What book are you reading?  I've been going through quite a few books that I get from the library on my Kindle.  It's just so convenient to pick them out on line and have them just pop up on my Kindle.  Love it!!  And the Kindle is so great for "old lady" eyes!!!

I've been having a very rough time lately.  I'm having some HUGE issues at work that are extremely stressful.  The worst I've ever experienced and it's not going to end soon.  I can feel anxiety creeping into my life and I've had some "digestive" issues.  The problem is, it all started to go downhill right after my Levoxyl was recalled and I changed to Tirosint.  

Now, I cannot tell if I'm just flipping out because of work or if the Tirosint is causing my problems.  I have managed to change medications before and I never, ever noticed a thing.  I've gone from Synthroid to Levothroid to Synthroid to Levoxyl with nary a complaint.  I've just been feeling so weird the last three weeks.  I've checked with my endo and he said I should take a little less Tirosint because it is more "pure" and it can be stronger at the same dosage.  So we shall see.  I had a very bad episode on Wednesday when I took my son on his college orientation.  

I really wish that recall hadn't happened at the same time my work life exploded.  I've been on the thyca message boards and have been reading some of the posts where people have been having troubles after getting off Levoxyl.  That's not helping my anxiety.

Oh well, the weekend is here and I'm going to try to chill.


----------



## luvmarypoppins

Christine - so sorry you are dealing with the stress and the medication issues. 

I am sure its hard to figure out if its the med or the stress. Worse reading how everyone else is having difficulty with the switch too.

Funny I was just reading the thy ca website the other day too. I just read, dont post anything. 

Sorry you are going to have to be dealing with the constant stress at work. Doesnt help things health wise I am sure. 

I wish I had a Kindle. I have hinted about the family getting me one. No luck. I think I may just go and get myself one someday.

Right now I am reading The Hearts Journey by Barbra Cameron Its an Amish fiction book. aww, visions of C. Ann from the community board.

The new book I won is Lock, Stock and Over a Barrel by Melody Carlson. Its a christian fiction book. Its suppose to be funny and light reading. 

The other book I just finished I promised the author to write a review on goodreads and amazon which I did.


----------



## mrsklamc

Thanks ladies! After 4 years, we are so happy! 

There aren't a lot of details to share yet, but due 2/6.


----------



## luvmarypoppins

mrsklamc said:


> Thanks ladies! After 4 years, we are so happy!
> 
> There aren't a lot of details to share yet, but due 2/6.



Just wondering, do they have to adjust your thy medication?


----------



## angwill

mrsklmac,

Congratulations on your pregnancy.  That is wonderful.


----------



## angwill

Just wanted to update.  I found a new doctor who I saw today about the mass on my thyroid that previous doctor wanted me to do an RAI scan on.  The new doctor agreed with me that the last doctor was wrong not to send me directly to biopsy.  I will be getting that as soon as the hospital can get me in next week, hopefully.  I am extremely relieved not to have to get the RAI scan that new doctor said she feels should be reserved for later after thyroidectomy, if needed.  I also found out either old doctor or her nurse was not benig honest with me on a bunch of things.  I am just relieved this doctor seems to know what she is talking about and cares enough to answer my questions and explain things.


----------



## SingingMom

angwill said:


> Just wanted to update.  I found a new doctor who I saw today about the mass on my thyroid that previous doctor wanted me to do an RAI scan on.  The new doctor agreed with me that the last doctor was wrong not to send me directly to biopsy.  I will be getting that as soon as the hospital can get me in next week, hopefully.  I am extremely relieved not to have to get the RAI scan that new doctor said she feels should be reserved for later after thyroidectomy, if needed.  I also found out either old doctor or her nurse was not benig honest with me on a bunch of things.  I am just relieved this doctor seems to know what she is talking about and cares enough to answer my questions and explain things.



Happy to hear you are now on the right path and are more confident with your new doctor!  Good luck!

"SingingMom" ....Sent from my iPad using DISBoards


----------



## mrsklamc

luvmarypoppins said:


> Just wondering, do they have to adjust your thy medication?



Yes, they will be checking my levels once a month. I was quite surprised that my dose had to be raised already after my first test, as I've actually lost two pounds.


----------



## luvmarypoppins

Micayla -  do they want your numbers to still be close to 0 or are they giving you some room so to speak?

angwill - I am glad you are getting the biopsy. I know you said you had no ins. That is why I was mentioning that you might want to check where they send your sample to. Some places have different prices for sure. My surgeon did both, sent it out and did some inhouse at the univ. I think the ones he did inhouse had a shorter turn around time. I know my one was over $3,000. Wising you all the best and I hope you get good results. 

Christine - can you believe I just one another 2 books. I gotta get a move on it but this next week I am teaching vacation bible school at my church so the only reading I am going to be doing is the lessons that I am teaching all week for now.


----------



## mrsklamc

You know, when trying I know she was keeping it around one...my TSH was four point something at my first test while expecting so she upped me from 112 to 125, but I didn't actually ask what she was aiming for!


----------



## angwill

Update: Had the biopsy this morning with 9 biopsies.  Got a call about 5 hours later that there are cancer cells so they on to a surgeon to remove the right side of my thyroid.  Thank God I didn't listen to the old doc or I would still be waiting to be able to get the RAI uptake scan.  Anyone know if that is a day surgery or would I have to stay overnight?  Anyone want to share details of theirs thyroid surgery and any advice?  Thanks so much,  

Ang


----------



## SingingMom

angwill said:


> Update: Had the biopsy this morning with 9 biopsies.  Got a call about 5 hours later that there are cancer cells so they on to a surgeon to remove the right side of my thyroid.  Thank God I didn't listen to the old doc or I would still be waiting to be able to get the RAI uptake scan.  Anyone know if that is a day surgery or would I have to stay overnight?  Anyone want to share details of theirs thyroid surgery and any advice?  Thanks so much,
> 
> Ang



Remember every surgery is different.  Mine was 20 years ago and it was a total thyroidectomy, lasting four hours.  I was in the hospital for two nights, in the "step down" unit. Bloodwork was done around the clock to make sure calcium levels were good.   My friend had her surgery in the past few years and it was same day.  Personally, I think it should be a hospital stay. I was pretty weak for a few days.

"SingingMom" ....Sent from my iPad using DISBoards


----------



## mrsklamc

Sorry for your diagnosis. 1. They shouldn't still be taking out half a thyroid for cancer. They need to take out the whole thing. That used to be accepted treatment, it's not any more. 2. Mine was what they call a 23.5 hour stay, which makes it less than 24 hours for insurance purposes. (Though IIRC, you're not currently insured?)


----------



## mrsklamc

Sorry my answer last night was brief but I wanted to get the info to you ASAP- removing half a thyroid is no longer considered appropriate treatment for thyroid cancer. They used to leave half a thyroid if it looked fine, but it just comes back, so they don't mess with having people go through two surgeries anymore.


----------



## Christine

Sorry about your diagnosis. 

Definitely get the whole thing out.  Hopefully your surgeon will know this.  I know you've mentioned your lack of insurance so I hope you are able to find a surgeon experienced with thyroidectomies.  It's important.

Also, visit www.thyca.org.  This is an organization devoted to thyroid cancer patients and survivors.  There are messge boards there where you can learn a LOT and also get recommendations from people in your area on surgeons.


----------



## luvmarypoppins

angwill - sorry about your diagnosis. As the others have said, I would def. get the whole thyroid out, not one side. 

I would see about staying overnight at the bare min. That way they can check your calcium levels. Also check for any surgical complications.

My surgery was not normal and I had to stay in the hospital for a week. 

Try to find a surgeon who does about 100 thyroidectomies a year. Mine did and he still still ran into so many complications with me.

Wishing you all the best


----------



## luvmarypoppins

So how is everyone doing?

Angwill - did you get to make an appt. with a surgeon yet?

I made an appt. for the blood test sat. 

After lunch I will look into making the sono appt. Ds2 or 3 will take me to that. I will do it while dh is away. 

Need to look into making an internist appt. too. 

micayla - how are you feeling?  

Has anyone heard of this? I think I just read it (forgot where), it was really her personal comment but then someone else said something etc. I think. She said she had a hard time breast feeding her kids etc. Someone else said there might be a link to that and thy ca??? Never heard of this before. Has anyone else. Just curious as to what everyone elses experiences were. I already had the fibroadenoma out on my L said so that side was not working and I tried  breast feeding the first ds and he never gained weight and became a permanent fixture on my chest so after 3 months I gave up. I didnt even think about it with ds 2 since we were in the middle of moving cross country and ds 3 forget it since my sister died 3 days after he was born. But wondering if there is some kind of link???

Christine - I just won 6 books, 2 of them from Goodreads, so I will have a busy summer. Just started one, its short - The Butler based on the upcoming movie. I got a review copy and I got a signed by the author copy of Bomb Shell by Catherine Coulter!

Ok back to the regularly scheduled thyroid thread!


----------



## angwill

Hi, I didn't get notification of everyones posts sorry.  

I did see the surgeon and my surgery is July 30th for a total thyroidectomy and at least a day and three quarters in the hospital.  The sugeon then said two rounds of radiation but from what I am reading and seeing on utube from the pros one should be enough so I will most likely talk to him about that.  I am dreading that the most.  Well I have never been in a hospital so the surgery is freaking me out too though.  

I too read and saw on utube that you should find a surgeon who does at least on thyroidectomy a month because that is the most important part with thyroid cancer.  That freaks me out too because I asked the surgeons nurse if he does them often and she said oh yeah there is no worry there in the last 10 years I worked for him he has done at least 10-15 which means 1 to 1.5 per year.  My doctor did tell me if she were going to get the surgery she would go to him insurance or not that he is the best she knows in the area.  

Here are the issues, first I live in the middle of nowhere so that is probably why he has not done more than that and most likely nobody in the area has done more.  There are no thyroid specialists anywhere within at least a 2 hour radius and even if there were I am a cash pay customer and the one surgeon I got is the only one the doctor knows of anywhere near me that takes cash paying patients on a payment plan.  No other surgeon will even talk to me without payment up front and that is not possible for me.  Gotta love the American health care system.


----------



## luvmarypoppins

angwill - I am glad you have a surgery date. I would have some concerns about the surgeon. It seems like that is not a good enough number of surgeries for him/her to deal with any complications etc. Is this a general surgeon, ent surgeon etc. But I guess this is the best option for you.

I am sure one dose of rai will be enough. They will tell you what your dose will be etc. They will address all the issues/concerns etc. since you said you live far from the hosp. There is only 1 hospital in our county that does the rai and it happens to be the one where I had my surgery so it worked out well and its close to my home. 

I lived pretty close to the hospital. about 20 minutes, but since I also had a draining stomach wound at the time which was unrelated to the cancer but from another surgery I stayed overnight for the rai. It was a creepy experience but had to be done. I dont think I will never look at blue plastic in quite the same way again.

Its probably all overwhelming but just take it one step at a time. 

Hang in there!


----------



## aym4Him

I didn't even know that this thread existed until now- I just happened to click on "Today's Posts" and "THYROID" just about jumped off the page!

I apologize that I haven't read through all the posts yet- I will do that (it will keep me sane while I anxiously await Fall FD to be announced!).  I just wanted to say hi and thank the OP for starting this.  The journey with thyroid issues can often be a lonely one- thankfully, my husband is very supportive.  Most others are like, "Don't you just take a pill? It could be worse!"  

My title is a bit incorrect- I guess you could say "Hypothyroid since 2004 and dx with Hashi's by the grace of God in 2006!" My thyroid issue was detected by a wellness screening the school district I was working for offered every 2 yrs.  My TSH came back at 13.4. I didn't have a doctor then so my boss referred me to her GP who put me on $ynthroid and said all my other symptoms were due to me being female and hormonal.  Granted, my mom passed away from cancer in '03 12 days after my wedding day, so in 2004, I was still reeling from that and moving 12 hours away from family.  However, looking back, I can see symptoms popping up even before that---maybe even in childhood.  

On $ynthroid and a statin for my high cholesterol (at the ripe old age of 29), my TSH went down to 5.  Cholesterol didn't budge much at all.  I didn't feel any better and I started having problems with my feet (later dx with plantar fasciitis).  I didn't get cold like most hypos do but my temp would fluctuate. I met a ThyCa survivor through an online support group I stumbled upon while Googling "thyroid" one night.  It turns out it was a group for thyroid sufferers in my area and DH and I went to one of their meetings.  I learned about FT3 and FT4 and how they can be more important than TSH. I learned about antibodies.  I learned that there were more meds out there..that there were more drs out there. They saw a guy 6 hrs away!! Now, we live in a big city with plenty of endocrinologists. Why would they drive out there to see a Family Practice Guy??  Well, long story short, that dude is one of the reasons we have a precious 4 1/2 yr old son!!!!!  DH sees him as well .

Oh- I didn't see "doc" until late 2006 after an allergist called with results from some blood work he ran as part of my allergy test panel (b/c my eyes randomly swelled up at work one day- school nurse sent me to my dr (the one who didn't think I was really sick) who sent me back to work.  Nurse sent me to urgent care who gave me a shot in the keister and referred me to the allergist.  Allergist asks if I'd ever been told I have Hashimoto's disease (over the phone).  "Hashi-what??"  Turns out, my antibodies were over 1800.  

Today, they are in the 400s and I see the "doc" 1x a year.  One of my "heart mom" friends was just DX with ThyCa and had a complete thyroidectomy last month.  She has urged me to ask to have mine scanned.  I plan to talk to "doc" the next time I see him.

Thank you for indulging me.  I'm sorry if this was long.  Believe me, they way I talk, it could have been much longer!! 

Do any of you have secondary chronic issues?  I'm not sure how much to attribute to me being athletic in my younger years and my body falling apart naturally to slower healing due to wonky levels.  This sounds silly, but my main thing (other than being disgusted at the mere thought of exercising) is my left foot.  Heel spurs.  I went from wonky arches with the plantar fasciitis (finally finding out my feet  Birkenstocks) to stinking heel pain and wishing I could have something cushy just for my heel.  We are heading back to WDW in November and I stress about footwear!! Last year I did a Chaco/Birkenstock combo.  Even after breaking the Chacos in for 5 months, they still started rubbing a blister on my big toe.  Switching to the Birkenstocks fixed that but my heel ached more (to the point where I dreaded getting up and going the next morning and applied moleskin to my FEET while wearing sandals! Fashonista, right here!).

Ok.  Really going now.  Nice to "meet" all of you!


----------



## mrsklamc

aym4Him said:


> I didn't even know that this thread existed until now- I just happened to click on "Today's Posts" and "THYROID" just about jumped off the page!
> 
> I apologize that I haven't read through all the posts yet- I will do that (it will keep me sane while I anxiously await Fall FD to be announced!).  I just wanted to say hi and thank the OP for starting this.  The journey with thyroid issues can often be a lonely one- thankfully, my husband is very supportive.  Most others are like, "Don't you just take a pill? It could be worse!"
> 
> My title is a bit incorrect- I guess you could say "Hypothyroid since 2004 and dx with Hashi's by the grace of God in 2006!" My thyroid issue was detected by a wellness screening the school district I was working for offered every 2 yrs.  My TSH came back at 13.4. I didn't have a doctor then so my boss referred me to her GP who put me on $ynthroid and said all my other symptoms were due to me being female and hormonal.  Granted, my mom passed away from cancer in '03 12 days after my wedding day, so in 2004, I was still reeling from that and moving 12 hours away from family.  However, looking back, I can see symptoms popping up even before that---maybe even in childhood.
> 
> On $ynthroid and a statin for my high cholesterol (at the ripe old age of 29), my TSH went down to 5.  Cholesterol didn't budge much at all.  I didn't feel any better and I started having problems with my feet (later dx with plantar fasciitis).  I didn't get cold like most hypos do but my temp would fluctuate. I met a ThyCa survivor through an online support group I stumbled upon while Googling "thyroid" one night.  It turns out it was a group for thyroid sufferers in my area and DH and I went to one of their meetings.  I learned about FT3 and FT4 and how they can be more important than TSH. I learned about antibodies.  I learned that there were more meds out there..that there were more drs out there. They saw a guy 6 hrs away!! Now, we live in a big city with plenty of endocrinologists. Why would they drive out there to see a Family Practice Guy??  Well, long story short, that dude is one of the reasons we have a precious 4 1/2 yr old son!!!!!  DH sees him as well .
> 
> Oh- I didn't see "doc" until late 2006 after an allergist called with results from some blood work he ran as part of my allergy test panel (b/c my eyes randomly swelled up at work one day- school nurse sent me to my dr (the one who didn't think I was really sick) who sent me back to work.  Nurse sent me to urgent care who gave me a shot in the keister and referred me to the allergist.  Allergist asks if I'd ever been told I have Hashimoto's disease (over the phone).  "Hashi-what??"  Turns out, my antibodies were over 1800.
> 
> Today, they are in the 400s and I see the "doc" 1x a year.  One of my "heart mom" friends was just DX with ThyCa and had a complete thyroidectomy last month.  She has urged me to ask to have mine scanned.  I plan to talk to "doc" the next time I see him.
> 
> Thank you for indulging me.  I'm sorry if this was long.  Believe me, they way I talk, it could have been much longer!!
> 
> Do any of you have secondary chronic issues?  I'm not sure how much to attribute to me being athletic in my younger years and my body falling apart naturally to slower healing due to wonky levels.  This sounds silly, but my main thing (other than being disgusted at the mere thought of exercising) is my left foot.  Heel spurs.  I went from wonky arches with the plantar fasciitis (finally finding out my feet  Birkenstocks) to stinking heel pain and wishing I could have something cushy just for my heel.  We are heading back to WDW in November and I stress about footwear!! Last year I did a Chaco/Birkenstock combo.  Even after breaking the Chacos in for 5 months, they still started rubbing a blister on my big toe.  Switching to the Birkenstocks fixed that but my heel ached more (to the point where I dreaded getting up and going the next morning and applied moleskin to my FEET while wearing sandals! Fashonista, right here!).
> 
> Ok.  Really going now.  Nice to "meet" all of you!



Welcome! I do have some secondary issues, but I had thyroid cancer...nothing like heel pain or anything.


----------



## mrsklamc

Angwill- I hate that your options seem so limited. I had a fabulous surgeon and I didn't know what a blessing it was until much later- how people loose parathyroids, get their voices damaged, etc. I don't mean to discourage you but I would encourage you tokeep researching if there are ANY other options at all. 

I had two doses, and I wish I had just had one higher dose up front.  I read a book by a husband and wife couple- can't think what it was but a married couple, he's a doctor and she's a thyroid cancer survivor- and IIRC they said when it was spread to your lymph nodes your 1st dose should be at least 200? I know it was higher than what I got, and I can't help but wonder if I would have had to have the second one if the first one had been higher.


----------



## mrsklamc

LMP-

I am actually feeling very well, and am so excited. 

I don't know if there is a connection between thyroid and BF or not, but I'll be googling!

My mother just called and said her doctor told her her pituitary gland is dying but he won't supplement her thyroid until it dies completely, so she should expect to keep gaining weight, being tired, and lose her hair! This makes no sense to me but I'm not having luck googling it because she doesn't know what the actual diagnosis is.


----------



## luvmarypoppins

aym4Him - I cant really comment about the Hashis. I know Christine knows a lot more about that then I do. What kind of scan do they want to do, ultrasound?, uptake scan etc? Saw about your special little guy. He is precious and a miracle for sure. I use to live in the Dallas area (Duncanville, Lancaster etc.) Sure do miss it. I took my ds to childrens in dallas for some possible heart issues. They thought they might have a genetic heart condition,but it turns out they didnt so we were so blessed. (My sister died from Marfans and had a ruptured aorta)But I would def.get your thyroid checked out.I think Hashis  really does a number on it. Its important to make sure your levels are good. How much synthroid/levo etc do you take? Cant comment on the other issues, like foot. I was born with a lot of bad genetic stuff so there are so many regular things wrong with me, I wouldnt even know what a normal thing was. Hang in there. One day at a time. 

angwill - I am concerned about your limited options too. Is there also a social worker at the hospital you could talk to and what you might qualify for under your state program etc? The radiation is pretty expensive too. Also you can do the withdrawl or thyrogen routes for that and the thyrogen is like $1k a shot? I am not sure because I had it 4 years ago. You need 2 of those or else you go through the withdrawl and people on here could tell you all about that, but I didnt do that route. My body was just too weak. I had already had 4 operations, lost a lot of blood and had to have some of my colon resected that was not due to the cancer, so I am not usual. I will spare you the other details till later on  Please try to get the best care you can based on the resources that are available to you. 

Micayla - Sorry your mom is going through that too. Glad you are feeling good. I was always in puke city for the first 3 months.

I guess my nonscientific cancer question is:  Did anyone have trouble breast feeding and then later on get thyroid cancer? Just wondering if there is some kind of link.Oh count me in as a yes, lol!

I made my blood test appt. for sat. Next onto the sonogram. I will try to have one of the ds take me. They never have parking there. I guess cancer is hot at the hosp.as well as people taking parking places because they dont want to pay the parking garage fee. 

Well my poor dh has a bad staph infection in his toe.They wanted to take his toenail off today.He said no.He is leaving Sunday for a week in Siberia Russia.I am not thrilled. to say the least. I will be doing alot of praying for sure.


----------



## luvmarypoppins

Oh did I mention that I might be going to Disney the end of Sept. My cousin is going and he said we should meet up. His dd , dh and their 2 boys will be there too. They live in the next state, never invite us to visit. Well we arent all that close, but he wants to get together in Disney. So hey, I will take it if it all works out.

I am going to do it on the cheap again
6 nights FREE at the Swan - thanks to dh frequent flier miles
Aps - o no cost for parks
Southwest - I might have some points to use toward a trip. So gonna look for something cheap for that 
Food - going to get another tiw card because we will use it again in december. Going to probably stay at the swan again for free - thanks to dh ff miles. 2 nights at the beach club too. 

I figure dh and I arent getting any younger and who knows with all my health issues on top of the cancer so there is no time like the present for Disney!
I have a feeling I will be looking at a hip replacement in the not too distant future.


----------



## angwill

mrsklamc said:


> Angwill- I hate that your options seem so limited. I had a fabulous surgeon and I didn't know what a blessing it was until much later- how people loose parathyroids, get their voices damaged, etc. I don't mean to discourage you but I would encourage you tokeep researching if there are ANY other options at all.
> 
> I had two doses, and I wish I had just had one higher dose up front.  I read a book by a husband and wife couple- can't think what it was but a married couple, he's a doctor and she's a thyroid cancer survivor- and IIRC they said when it was spread to your lymph nodes your 1st dose should be at least 200? I know it was higher than what I got, and I can't help but wonder if I would have had to have the second one if the first one had been higher.



I hate that my options are so limited as well believe me.  I did some looking online and calling around and between limited experience and not taking payments and wanting cash up front I am stuck it seems.  I will keep looking and in the meantime if I end up with this surgeon at least I can keep in my mind that my doctor did say that if she had a choice insurance or not she would pick the surgeon she sent me to.  

I will keep the info you said in mind once the surgery is done.  He looked at just the size of my mass and said at least 2 doses so he must suspect some spreading.  I did not ask the dosage.  I also read a utube seminar with a surgeon and endocrinologist from the thyroid association who said to keep the dose as low as possible to prevent problems with the salivary glands and tear ducts.


----------



## angwill

aym4Him said:


> I didn't even know that this thread existed until now- I just happened to click on "Today's Posts" and "THYROID" just about jumped off the page!
> 
> I apologize that I haven't read through all the posts yet- I will do that (it will keep me sane while I anxiously await Fall FD to be announced!).  I just wanted to say hi and thank the OP for starting this.  The journey with thyroid issues can often be a lonely one- thankfully, my husband is very supportive.  Most others are like, "Don't you just take a pill? It could be worse!"
> 
> My title is a bit incorrect- I guess you could say "Hypothyroid since 2004 and dx with Hashi's by the grace of God in 2006!" My thyroid issue was detected by a wellness screening the school district I was working for offered every 2 yrs.  My TSH came back at 13.4. I didn't have a doctor then so my boss referred me to her GP who put me on $ynthroid and said all my other symptoms were due to me being female and hormonal.  Granted, my mom passed away from cancer in '03 12 days after my wedding day, so in 2004, I was still reeling from that and moving 12 hours away from family.  However, looking back, I can see symptoms popping up even before that---maybe even in childhood.
> 
> On $ynthroid and a statin for my high cholesterol (at the ripe old age of 29), my TSH went down to 5.  Cholesterol didn't budge much at all.  I didn't feel any better and I started having problems with my feet (later dx with plantar fasciitis).  I didn't get cold like most hypos do but my temp would fluctuate. I met a ThyCa survivor through an online support group I stumbled upon while Googling "thyroid" one night.  It turns out it was a group for thyroid sufferers in my area and DH and I went to one of their meetings.  I learned about FT3 and FT4 and how they can be more important than TSH. I learned about antibodies.  I learned that there were more meds out there..that there were more drs out there. They saw a guy 6 hrs away!! Now, we live in a big city with plenty of endocrinologists. Why would they drive out there to see a Family Practice Guy??  Well, long story short, that dude is one of the reasons we have a precious 4 1/2 yr old son!!!!!  DH sees him as well .
> 
> Oh- I didn't see "doc" until late 2006 after an allergist called with results from some blood work he ran as part of my allergy test panel (b/c my eyes randomly swelled up at work one day- school nurse sent me to my dr (the one who didn't think I was really sick) who sent me back to work.  Nurse sent me to urgent care who gave me a shot in the keister and referred me to the allergist.  Allergist asks if I'd ever been told I have Hashimoto's disease (over the phone).  "Hashi-what??"  Turns out, my antibodies were over 1800.
> 
> Today, they are in the 400s and I see the "doc" 1x a year.  One of my "heart mom" friends was just DX with ThyCa and had a complete thyroidectomy last month.  She has urged me to ask to have mine scanned.  I plan to talk to "doc" the next time I see him.
> 
> Thank you for indulging me.  I'm sorry if this was long.  Believe me, they way I talk, it could have been much longer!!
> 
> Do any of you have secondary chronic issues?  I'm not sure how much to attribute to me being athletic in my younger years and my body falling apart naturally to slower healing due to wonky levels.  This sounds silly, but my main thing (other than being disgusted at the mere thought of exercising) is my left foot.  Heel spurs.  I went from wonky arches with the plantar fasciitis (finally finding out my feet  Birkenstocks) to stinking heel pain and wishing I could have something cushy just for my heel.  We are heading back to WDW in November and I stress about footwear!! Last year I did a Chaco/Birkenstock combo.  Even after breaking the Chacos in for 5 months, they still started rubbing a blister on my big toe.  Switching to the Birkenstocks fixed that but my heel ached more (to the point where I dreaded getting up and going the next morning and applied moleskin to my FEET while wearing sandals! Fashonista, right here!).
> 
> Ok.  Really going now.  Nice to "meet" all of you!



Hello,  I recently found out I have Hoshimoto's too but I am more focused on the thyroid cancer for now.  I have no issues with my feet at all but one thing I realized by listening to others with thyroid issues is that it effects everyone differently.  I know I have horrible issues with my weight and always have and I have heard people with hypothyroidism tell me it isn't the hypothyroidism because they never had a weight issue.  They also don't live with me and count my calories in to calories burned to make that judgement.  

I am also one with a low tollerance for the cold.  Under 70 is too cold for me and I am really loving this 90 plus degree weather we are having. I have no problems with my cholesterol levels either and they have always been in the lower range for all the numbers including the good.  I also have no allergies that I know of.  See how different things can be from one person to another.  

I do hope you find a good pair of shoes for your WDW trip and I hope that free dining comes out for you soon.  Sadly, we will not be making any trips to WDW anytime soon with the bills we will have coming in but maybe someday.  I can dream anyway. lol


----------



## luvmarypoppins

Has anyone seen the Huffington Post article about they are worried that 2,000 nuclear power plant workers from the ***ishima plant in Japan face the likely hood of getting thyroid cancer? 

Also in my paper today they had a little article about a lady with thyroid cancer who lives in the next county. She didint say what kind she had but the article said she had radiation and chemo and it was not responding and it spread to her lung etc. They had her picture and you could tell she had a big neck dissection on one side. Kind of looks like mine, all caved in etc.

Well she said she sought out some doctor, they named him but didnt say where he was from. This guy put her on tumeric, and some supplements (vitamins) and her cancer got immediately better. Anyone here of stuff like this? This lady is claiming it was the tumeric that helped her????

I got the blood test yest. As usual my veins are a challenge. She had to use a butterfly on me. Oh joy, I feel like a pediatric patient. Well also in the hospital they had to do that several times, so I should expect it.  At least its better than getting poked with the big (aka) regular needle which is a challenge in itself sometimes as they have to wiggle it around if they dont get a good return etc. 

Hope everyone is doing well.


----------



## angwill

luvmarypoppins said:


> Has anyone seen the Huffington Post article about they are worried that 2,000 nuclear power plant workers from the ***ishima plant in Japan face the likely hood of getting thyroid cancer?
> 
> Also in my paper today they had a little article about a lady with thyroid cancer who lives in the next county. She didint say what kind she had but the article said she had radiation and chemo and it was not responding and it spread to her lung etc. They had her picture and you could tell she had a big neck dissection on one side. Kind of looks like mine, all caved in etc.
> 
> Well she said she sought out some doctor, they named him but didnt say where he was from. This guy put her on tumeric, and some supplements (vitamins) and her cancer got immediately better. Anyone here of stuff like this? This lady is claiming it was the tumeric that helped her????
> 
> I got the blood test yest. As usual my veins are a challenge. She had to use a butterfly on me. Oh joy, I feel like a pediatric patient. Well also in the hospital they had to do that several times, so I should expect it.  At least its better than getting poked with the big (aka) regular needle which is a challenge in itself sometimes as they have to wiggle it around if they dont get a good return etc.
> 
> Hope everyone is doing well.



I know they were worried about the Japanese at the power plant and thyroid cancer right when the incident happened.  For clean up I read that elderly people from the area volunteered to do the work to save the younger generation from any consequences.  

I use tumeric in my food all the time and I still have thyroid cancer so I don't know how much faith I would put in it but it can not hurt to use it when cooking.  Why would someone with thyroid cancer get chemo?  I read that chemo does nothing for thyroid cancer.  

It stinks having bad veins.  I have the same issue so before going in for blood work I always drink so much water I have to pee when I get to the doctor and when I am done. lol  Water makes you an easier stick.  When I don't drink enough my blood tends to coagulate and stop flowing even when they do get a good vein.  HTH

I hope your tests are done for a while at least.


----------



## mrsklamc

I'd heard they were concerned about infants in Japan, and even that there's been an upswing in thyca rates for American infants on the West coast at the time, so I'm not surprised. 

I think they use beam radiation sometimes when RAI isn't working and they know exactly where a mass is to target.

We don't usually use turmeric but my DH tried to make homemade mustard for my first round of the diet. We didn't know that mustard should mellow- I believe that stuff could kill something but I wouldn't go that route for my thyca treatment personally. 

Endo today, OB tomorrow!


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## luvmarypoppins

micayla - hope your visits go well. 

I am calling to make a sono appt. today. I didnt do my 6 month one, so I need this one as it will be a year.

I know they use chemo for medullary thyroid cancer. I dont know if that is what she had.


----------



## luvmarypoppins

I am going for my sono on Friday. I just hope my regular sono girl is not on vacation because I am use to her etc. 

Hope everyone is doing well.

I miss Jenn posting. I am thinking she is on her regular disney vacation. She always goes in July.


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## luvmarypoppins

Well I am back from the sono. Of course my reg. girl was on vacation. I really liked the new girl. She was so young and gentle.

I was thinking maybe she is too gentle and not pushing down hard enough to get good pictures? Then she shocked me by actually cleaning off my neck herself!! Wow, the other girl just gives me the rag and I have to do it myself. Hmm, maybe I could get used to her. She is a little too quiet though, my reg. girl is chatty.

They didnt ask me to stay for additional pics so I like that for sure!

How did your visits go this week Micayla?

I honestly dont know when my endo visit is. I guess I will call monday and see. 

Talked to my dh twice from Siberia so all is right with my world

angwill - how are things going?

Christine - I just finished book #5 this year.  How is the dorm shopping going? I guess that is the good thing about all my ds being commuters. No shopping for stuff like that and no dorm fees. Also I dont have to freak out when they come back home because they have never left, that is the down side. I make them pay for their own gas though. 

Have a great week end everyone.


----------



## mrsklamc

Tuesday was the worst day of my life. US showed something called a cystic hygroma; the first doc made it sound like a death sentence, and while it's not as dire as she made it sound, odds are fairly high for a chromosomal problem or heart/kidney problem. Sometimes it CAN just go away on its own so of course that is what we are praying for but the waiting is just miserable. They did some kind of chromosome test but the results take 2-3 weeks.


----------



## luvmarypoppins

mrsklamc said:


> Tuesday was the worst day of my life. US showed something called a cystic hygroma; the first doc made it sound like a death sentence, and while it's not as dire as she made it sound, odds are fairly high for a chromosomal problem or heart/kidney problem. Sometimes it CAN just go away on its own so of course that is what we are praying for but the waiting is just miserable. They did some kind of chromosome test but the results take 2-3 weeks.



 I am so sorry you had to hear that. My thoughts and prayers are with you and your dh. I am sure the waiting is the hardest.


----------



## SingingMom

mrsklamc said:


> Tuesday was the worst day of my life. US showed something called a cystic hygroma; the first doc made it sound like a death sentence, and while it's not as dire as she made it sound, odds are fairly high for a chromosomal problem or heart/kidney problem. Sometimes it CAN just go away on its own so of course that is what we are praying for but the waiting is just miserable. They did some kind of chromosome test but the results take 2-3 weeks.



Prayers going out to you...

"SingingMom" ....Sent from my iPad using DISBoards


----------



## angwill

luvmarypoppins said:


> Well I am back from the sono. Of course my reg. girl was on vacation. I really liked the new girl. She was so young and gentle.
> 
> I was thinking maybe she is too gentle and not pushing down hard enough to get good pictures? Then she shocked me by actually cleaning off my neck herself!! Wow, the other girl just gives me the rag and I have to do it myself. Hmm, maybe I could get used to her. She is a little too quiet though, my reg. girl is chatty.
> 
> They didnt ask me to stay for additional pics so I like that for sure!
> 
> How did your visits go this week Micayla?
> 
> I honestly dont know when my endo visit is. I guess I will call monday and see.
> 
> Talked to my dh twice from Siberia so all is right with my world
> 
> angwill - how are things going?
> 
> Christine - I just finished book #5 this year.  How is the dorm shopping going? I guess that is the good thing about all my ds being commuters. No shopping for stuff like that and no dorm fees. Also I dont have to freak out when they come back home because they have never left, that is the down side. I make them pay for their own gas though.
> 
> Have a great week end everyone.



You know for my first ultrasound I was given a rag but then one doing it for the biopsy did it for me. I guess it is up to them?

I prefer chatting medical personel. 

So glad you got to talk to your DH in Siberia.  I hope it wasn't you who sent him there. lol  

I am doing good.  Oddly enough I had written an email to a man with my birth fathers name a few months back and he answered this past Monday.  I had never met him and only had very limited info like his name and not even sure of the spelling.  We have been chatting back and forth since then and it is totally keeping my mind off the scary surgery this Tuesday and the other stuff coming up.  It is nice not having to talk about the cancer or anything medical.  

I hope you have a great weekend.  Thanks for asking about me.  

Ang


----------



## angwill

mrsklamc said:


> Tuesday was the worst day of my life. US showed something called a cystic hygroma; the first doc made it sound like a death sentence, and while it's not as dire as she made it sound, odds are fairly high for a chromosomal problem or heart/kidney problem. Sometimes it CAN just go away on its own so of course that is what we are praying for but the waiting is just miserable. They did some kind of chromosome test but the results take 2-3 weeks.



I am so sorry for your bad news.  I will send prayers your way.  Waiting is the worst part of it all and can drive you crazy.  Try and find something to keep your mind on instead.  I know easier said than done.  I would start calling every day and bug them till they get the results tell them it is killing you to wait.  Some labs take longer than others.  

Prayers and pixie dust headed your way.

Ang


----------



## Christine

Good morning everyone.  

mrsklamc:  I'm sorry to hear about your bad news.  Hopefully this will just resolve itself but the waiting can be devastating in and of itself.  When I was pregnant with my daughter, one of my genetic tests came back indicative of a disorder.  I then had to go to the "big city" hospital and work with a geneticist and have more testing done.  It took forever and by the time I figured out that all was well, I was about 24 weeks pregnant.  It was very scary.  It really just kind of ruins what should be a very happy time.

angwill--how is everything going with your thyroid cancer stuff?  Are you scheduled for surgery yet?  

As I posted a few weeks ago, I was part of the Levoxyl recall.  Had what I *thought* was a terrible time with the new medication Tirosint.  I finally was able to switch to a generic thyroid medication made my Sandoz that has pretty much the same binders as Levoxyl.  I took that for about 5 days when I "found" a 90 day supply of Levoxyl hiding in my cabinet.  Sometimes, yes, I really scare myself.  So I went back to that just to try to get myself to some normal place.  The generic Sandoz pills actually seemed to be doing okay.  The problem is that I've had so much stress at work and it all coincided with the Levoxyl recall that I can't tell if the stress is causing my physical symptoms or the change in meds.  I've basically had 6 weeks of intestinal issues.  The stress at work has pretty much started to go away and the intestines seem like they are improving but nothing is back to the way it should be yet.  Like I said, is it work on the med change?  I just don't know.  It's very frustrating and poor timing.  I figured if I just went back to the Levoxyl, I could at least sort that part out.

On top of it all, I'm in the midst of getting two kids ready to go back to college.  One for her last year and my youngest is going away for his freshman year.  Very exciting but probably not helping my stress levels.  Spent a good bit of money in Bed Bath and Beyond yesterday.

Hope everyone is doing well otherwise!


----------



## luvmarypoppins

Christine - I am glad the stress issues at work are resolving. That is great that you found those meds. I can only get 90 days on mail order if its generic and I wont do that so its just 30 days brand name at the drug store for me. 

angwill - wishing you all the best with your surgery. 

Micayla - prayers and good thoughts for you always sweetie

Hmm...what should I think of this????
Remember how I said my endo never tells me my blood numbers. Just its less than 0 etc.  Well right now she is in Cyprus on vacation visiting her family. So low and behold in the mail I get a letter about my test results.

They have the tests listed and comparing them from 6 months ago. The letter says I am WNL for thy ca patients.

The thyroglobulin is less than 0.2 but the tsh has gone from .34 to .86. Should I worry about that? Does that indicate that I should be more tired etc? I tell her how tired I am and she doesnt seem to care etc. She just says you are always like that. etc. The weight is also getting to be an issue too. Sometimes I feel like I wake up and never have slept. 

Well last night I felt like that. Trying to find a comfortable position with 3 pillows and a neck dissection is never easy.

Also my calcium has decreased. Hmm, after that $3k infusion you think it would get better or stay the same?

Well chime in with your thoughts and insights.


----------



## Christine

luvmarypoppins said:


> They have the tests listed and comparing them from 6 months ago. The letter says I am WNL for thy ca patients.
> 
> The thyroglobulin is less than 0.2 but the tsh has gone from .34 to .86. Should I worry about that? Does that indicate that I should be more tired etc? I tell her how tired I am and she doesnt seem to care etc. She just says you are always like that. etc. The weight is also getting to be an issue too. Sometimes I feel like I wake up and never have slept.
> 
> Well chime in with your thoughts and insights.




luvmarypoppins:  the change in your TSH is fairly minor.  It is a change and could be indicative just anything.  However, most non-thyroid cancer people, are normally at 2.0 and that is considered the "ideal" TSH.  At .86, you are not considered hyperthyroid and this number would not make you tired.

I don't know your age, but I know you have college aged kids and I'd be more inclined to think you have perimenopause or hormonal issues than TSH issues.  

I don't sleep more than 5 hours a night most nights anymore due to this an am always lethargic.  But my 40/50-ish ladies around me are all feeling the same way.  

As for the calcium, that is something that can flucuate daily so I'm not sure what to make of that, if anything.


----------



## SingingMom

Christine said:


> luvmarypoppins:  the change in your TSH is fairly minor.  It is a change and could be indicative just anything.  However, most non-thyroid cancer people, are normally at 2.0 and that is considered the "ideal" TSH.  At .86, you are not considered hyperthyroid and this number would not make you tired.
> 
> I don't know your age, but I know you have college aged kids and I'd be more inclined to think you have perimenopause or hormonal issues than TSH issues.
> 
> I don't sleep more than 5 hours a night most nights anymore due to this an am always lethargic.  But my 40/50-ish ladies around me are all feeling the same way.
> 
> As for the calcium, that is something that can flucuate daily so I'm not sure what to make of that, if anything.



I am 50 and feeling the same way - tired, don't sleep.  Last year developed high blood pressure out of nowhere. 
Last week, had a major hot flash while climbing the hill to a castle on our Adventures by Disney tour in Germany. Thought I would pass out from being so hot.  Perimenopause is the pits after being a thyroid cancer survivor!  Lol

"SingingMom" ....Sent from my iPad using DISBoards


----------



## FWAddict

Wow! This thread is over 6 years old and still going! I'm glad I found it too. I've only gotten in a few pages and I'm sure it'll take me quite a while to read all of it but I can relate to a lot of what I've read already! Officially I was diagnosed with hyperthyroidism last June; I mean that's when I was TOLD that I had it. The doctor gave me a few pages of my records at that visit and I read through them when I got home. Imagine my surprise AND anger when I read that I had actually been diagnosed in 2011 but obviously the doctor didn't feel it necessary to tell ME! I was going to a practice with multiple doctors and the doctor who actually told me I had it wasn't the one who actually diagnosed it. I'm sure there are some of you out there who understand how confusing and frustrating it is to wonder what in the world is wrong with you!!! The feeling of being unbalanced, heart palpitations, not being able to sleep for long or even taking forever to go to sleep, etc. I finally struck out and changed doctors and was sent to an Endo. about an hour and half away. However, she is wonderful! She's very patient and has no problem answering any question I have and doesn't rush through my visit. That is especially important to me because I have no health insurance and have to pay for everything out-of-pocket. I'm sure ya'll know how expensive specialists can be.  I can't afford the scan she wants me to get so for the time being I'm on 20 mg of methimazole a day. She upped it from 10 to 20 after my 2nd visit since 10 didn't change my readings. I go back in September so hopefully the increase in meds will have helped. Hope so anyway! Anyone having pain in their hands?? Over the last couple years my hands have gotten worse with arthritis-like pain. For the last few months it's been bad enough at times that it keeps me from going to sleep. Also the ring fingers on both hands are getting 'stuck' in the bent position; that is when I can bend them. I haven't been able to actually bend the one on my right hand for weeks now. My sister mentioned something called 'trigger finger'. I looked it up but I'm a bit confused about that. Apparently it's usually caused by repetitive behavior and other than typing on my laptop I don't do anything that's really repetitive. It's really frustrating because it affects how I use my hands. It's almost impossible to hold a knife correctly in order to peel potatoes, etc. Is this a problem with any of ya'll? I also am recovering from chronic anemia due to extreme menorrhagia resulting in 2 blood transfusions so I'm exhausted all of the time. It's a shame to feel like you're 100 when you're only 46.   Oh I forgot something..........found out this weird pain in my foot is plantar fasciitis. Also, my pain threshold is non-existent. I used to be able to deal with pain; now every little thing really bothers me. I'm waiting on my next test results now because I need some dental work done and will have to have it done under sedation. They can't numb me enough right now. The dentist said my metabolism must be revved up like a race car!


----------



## mrsklamc

Christine said:


> mrsklamc:  I'm sorry to hear about your bad news.  Hopefully this will just resolve itself but the waiting can be devastating in and of itself.  When I was pregnant with my daughter, one of my genetic tests came back indicative of a disorder.  I then had to go to the "big city" hospital and work with a geneticist and have more testing done.  It took forever and by the time I figured out that all was well, I was about 24 weeks pregnant.  It was very scary.  It really just kind of ruins what should be a very happy time.



Exactly. I was kind of 'non functional' for a day and then started forcing myself to continue on looking at baby stuff, etc like I was. Statistics vary widely but I think the truth is they really don't know. I've seen as high as 91% quoted as the termination rate w/o any additional testing so there's probably not a lot of motivation to research very much. 

So glad you found some levoxyl. I hoard all my old doseages of synthroid, I know it's just paranoia but....


----------



## mrsklamc

Thank you everyone for the prayers and positive thoughts. The waiting is awful but I'm in a much better place than I was.

LMP- I can't speak to your #s but I am so sorry you are going through this. That 'never rested' feeling is awful.


----------



## luvmarypoppins

Hmm, well is anyone here with thy ca going to comment on the thread on the comm board about the fastest growing cancer.

I am just reading a long right now. Remember we had that little discussion here about what we think caused our cancer????

Seems they are saying fluoridated water from that article quoted in the thread.

Well I grew up on well water but I know there was a dumping ground from a medical company that produced drugs etc not too far away and then all the x rays that I got as a teen with scoliosis and they were centered on my neck, not all of them but quite a few as they were deciding what to do with the c curve in my neck - hmm should we halo or not halo this etc??

Or maybe it was the red hawaiian punch???

We will never know will we???

Feel free to discuss.


----------



## mrsklamc

I came over here to see if you guys saw that. Honestly, the cancer that fluoride is even SUSPECTED of causing is osteosarcoma.


----------



## Christine

I think the OP of that thread has her own agenda in regards to flouride.  I don't believe the article even mentioned it.  

There's a whole "internet" thing on flouride.


----------



## angwill

luvmarypoppins said:


> Hmm, well is anyone here with thy ca going to comment on the thread on the comm board about the fastest growing cancer.
> 
> I am just reading a long right now. Remember we had that little discussion here about what we think caused our cancer????
> 
> Seems they are saying fluoridated water from that article quoted in the thread.
> 
> Well I grew up on well water but I know there was a dumping ground from a medical company that produced drugs etc not too far away and then all the x rays that I got as a teen with scoliosis and they were centered on my neck, not all of them but quite a few as they were deciding what to do with the c curve in my neck - hmm should we halo or not halo this etc??
> 
> Or maybe it was the red hawaiian punch???
> 
> We will never know will we???
> 
> Feel free to discuss.



I have thyroid cancer now and I drink only bottled water because our well water is awful.  There is no flouride in the bottled water I drink either.  I also did not get many xrays in my life at all.  I never broke a bone and hate to admit I had not been to a dentist in probably 15 years before last year.  I do live near a nuclear power plant however.  My aunt thinks all the cancers are due to Monsanto and their modification and chemical in the fields.  I have no clue what the cause of my cancer is all I know is I want that crap out of me.  One more sleep and it's gone, I pray.


----------



## angwill

FWAddict said:


> Wow! This thread is over 6 years old and still going! I'm glad I found it too. I've only gotten in a few pages and I'm sure it'll take me quite a while to read all of it but I can relate to a lot of what I've read already! Officially I was diagnosed with hyperthyroidism last June; I mean that's when I was TOLD that I had it. The doctor gave me a few pages of my records at that visit and I read through them when I got home. Imagine my surprise AND anger when I read that I had actually been diagnosed in 2011 but obviously the doctor didn't feel it necessary to tell ME! I was going to a practice with multiple doctors and the doctor who actually told me I had it wasn't the one who actually diagnosed it. I'm sure there are some of you out there who understand how confusing and frustrating it is to wonder what in the world is wrong with you!!! The feeling of being unbalanced, heart palpitations, not being able to sleep for long or even taking forever to go to sleep, etc. I finally struck out and changed doctors and was sent to an Endo. about an hour and half away. However, she is wonderful! She's very patient and has no problem answering any question I have and doesn't rush through my visit. That is especially important to me because I have no health insurance and have to pay for everything out-of-pocket. I'm sure ya'll know how expensive specialists can be.  I can't afford the scan she wants me to get so for the time being I'm on 20 mg of methimazole a day. She upped it from 10 to 20 after my 2nd visit since 10 didn't change my readings. I go back in September so hopefully the increase in meds will have helped. Hope so anyway! Anyone having pain in their hands?? Over the last couple years my hands have gotten worse with arthritis-like pain. For the last few months it's been bad enough at times that it keeps me from going to sleep. Also the ring fingers on both hands are getting 'stuck' in the bent position; that is when I can bend them. I haven't been able to actually bend the one on my right hand for weeks now. My sister mentioned something called 'trigger finger'. I looked it up but I'm a bit confused about that. Apparently it's usually caused by repetitive behavior and other than typing on my laptop I don't do anything that's really repetitive. It's really frustrating because it affects how I use my hands. It's almost impossible to hold a knife correctly in order to peel potatoes, etc. Is this a problem with any of ya'll? I also am recovering from chronic anemia due to extreme menorrhagia resulting in 2 blood transfusions so I'm exhausted all of the time. It's a shame to feel like you're 100 when you're only 46.   Oh I forgot something..........found out this weird pain in my foot is plantar fasciitis. Also, my pain threshold is non-existent. I used to be able to deal with pain; now every little thing really bothers me. I'm waiting on my next test results now because I need some dental work done and will have to have it done under sedation. They can't numb me enough right now. The dentist said my metabolism must be revved up like a race car!



I have hypothyroidism and Hoshimoto's and have had it for almost 20 years.  Now I have thyroid cancer so there is not a lot of symptoms I have that should be the same as yours, sorry.  I have had problems with joints and such but I don't know if it was thyroid related.  Like others here I am 44 and have the perimenopausal symptoms of lack of sleep and being exhausted all the time and I have always and forever had weight issues despite watching my calories and working out.  I have noticed even people with the same diagnosis can have some completely different symptoms and then some similar.  I think it just depends on how that whole region of the metabolism works including not only the thyroid but the pituitary and thalamus region.  

I will urge you to get the ultrasound or whatever scan your doctor recommends.  I too do not have insurance so I get it but had I put off my scan my cancer would still be growing.  Call the hospital and ask for their financial department and explain your situation and what your doctor wants and ask if they can help you.  Try to find a non for profit hospital as the for profits most likely will do nothing for you.  Some won't even take payments.  If you don't want to do that start putting aside any cash you can till you have enough for that scan.  The hospital should be able to tell you the cost of the scan but not the cost for the specialists doing and reading it.  

I wish you luck with the dentist too.


----------



## luvmarypoppins

angwill - wishing you all the best tomm. Sending prayers your way.


----------



## angwill

luvmarypoppins said:


> angwill - wishing you all the best tomm. Sending prayers your way.



Thank you.  If all goes well I will be out Wednesday evening.


----------



## mrsklamc

angwill said:


> Thank you.  If all goes well I will be out Wednesday evening.



Praying for your surgery!


----------



## angwill

I am back home and the cancer is out.  Yeah!!!  They did find a second smaller nodule inside the other portion of my thyroid that the large cancer mass.  The doctor said he didn't see any of my parathyroid glands in what he removed.  My voice is really horse and he told me when I stop talking it will get better.  I didn't shut up while high on the meds I guess. lol  He said there was very little bleeding which is a good sign the cancer had not spread and he didn't seem to see any lymph node issues while in there so his best guess is it was contained in the mass.  Yeah!!!  Only one round of radioactive iodine is needed and oddly enough the endo who is working with me and my sugeon said he doesn't do the LID diet before iodine but if I want to do it I was welcome to do so.  One the Utube video I saw with the director of the Thyroid Cancer org said the diet is controversial too.  I think I will follow the diet for two weeks before radiation on my own.  

I am so relieved that the cancerous mass it out of there and in a jar right now.  lol 

My calcium was just a tad low at 4.3 and 4.5 when normal is 4.6.  They sent me home with pain meds and the order to keep taking my normal daily calcium pill.  Here I was worried that my doctor had only done 1 of these a year and he was awsome.  

Thank you for all the good wishes.

Angela


----------



## luvmarypoppins

FW Addict - sorry you are dealing with so many issues all at once.

I had severe anemia before I was diagnosed with thy ca and had to have 3 blood transfusions too.

I know the hyper feeling and heart palpatations. I had to be like that for a while with the meds due to the thy ca but my meds are much lowered now and seem to be ok and bearable for the dosage.

I hope your visit goes well in Sept. and maybe your dr. can make a suggestion if you cant do the scan.

Wishing you all the best.


----------



## luvmarypoppins

angwill - I am so glad you are home from the hosp and that you seem to be doing really well. So good you didnt have much bleeding.

The voice will come back in time. Just dont push it. 

My voice is still not good at times but I had so much surgical trauma and damage. Glad you didnt read this whole thread or you would have seen that I almost died during my surgery and was in a coma. And my dr. does over 100 of these a year! But my ca was pretty huge and spread.

Well onto the next step for you. The wonderful diet. I dont know if you are going the withdrawl route (cant help you there as I had thyrogen or the thyrogen route). 

I think we will all tell you to do the diet.

Its a good time to do it as there are many fresh fruits and vegetables you can pick from.

Micayla has a lot of yummy ideas.

Christine has one of her recipes in the LID  cookbook.

My LID was really restrictive. It was a combination of the thyca lid, the nih diet and my radiation oncologists own diet. 

They say most people lose 10 lbs. on the diet.

So now you wait to see what type you have and how much rai you are getting, but in the meantime rest up!

So glad you are home. Take it easy, One day at a time.


----------



## SingingMom

What diet?  I think I missed something. 

The "voice" - ah..... Brings back a flood of memories......

Before "the Internet" hubby & I sat pouring over medical books in the local college's library, educating ourselves on thyroid cancer. 
I had an excellent surgeon. Cocky and arrogant in the way a person can be when they do know they ARE the best - not rude, just very confident. 

The only time I saw him flinch was when I asked about complications of vocal chord damage. I said "I am a singer" and he looked at me & said "umm professionally ?"  I said "I do get paid occasionally ";-)

He answered"well, we will do our best I promise"

When the chief resident came to check on me after surgery, I mentioned my speaking voice sounded the same. He said "oh, the surgeon said  he had to be EXTRA careful, because he had a SINGER here!" 

20 years later, I am still singing, and still sometimes getting paid.  Lol.


----------



## mrsklamc

Singing mom- they are talking about the Low Iodine Diet for cancer patients.

Tests came back 99% for Down's. I'm pretty heartbroken. My DH is unfazed though. Not much rattles him.


----------



## SingingMom

mrsklamc said:


> Singing mom- they are talking about the Low Iodine Diet for cancer patients.
> 
> Tests came back 99% for Down's. I'm pretty heartbroken. My DH is unfazed though. Not much rattles him.



((Hugs))....  My heart goes out to you.  Downs children are especially loving and angelic. I pray you and your husband are blessed with support and love all around you...

"SingingMom" ....Sent from my iPad using DISBoards


----------



## luvmarypoppins

mrsklamc said:


> Singing mom- they are talking about the Low Iodine Diet for cancer patients.
> 
> Tests came back 99% for Down's. I'm pretty heartbroken. My DH is unfazed though. Not much rattles him.



My thoughts and prayers are with you. Yes surround yourself with loving and supportive people and seek wise counsel.


----------



## Christine

mrsklamc said:


> Tests came back 99% for Down's. I'm pretty heartbroken. My DH is unfazed though. Not much rattles him.




mrsklamc, I'm sorry that this didn't come out the way you hoped.    I was really pulling for some sort of fluke.  I guess you will have further tests to get something definitive?


----------



## mrsklamc

Christine said:


> mrsklamc, I'm sorry that this didn't come out the way you hoped.    I was really pulling for some sort of fluke.  I guess you will have further tests to get something definitive?



Probably. I do have some hope though:

http://online.wsj.com/article/SB10001424127887324883604578398791568615644.html

Even though it is statistically unlikely, I'm still holding out hope we're in that margin of error. Never prayed so much for anything in my life.

We'll decide on further testing after we speak with the Maternal Fetal Med specialist again.


----------



## desamnik

for 3 years and being on meds for a year or so, I asked the endocronologist what causes this, she says "stress", when I asked my PCP (which I've since dumped) why I was losing so much hair, she says "stress". 

I live a pretty easy life, don't have to work, easy going husband, not in debit etc,,,,don't consider myself to be stressed out.

Well, my latest blood work now shows that I have Hashimotos Disease. I'm guessing if I ask why I have this, the answer will be "stress".  I really dislike that answer for everything!!  Seems like a copout to me 

Just wanted to vent a bit, thanks for listening.


----------



## Christine

desamnik said:


> for 3 years and being on meds for a year or so, I asked the endocronologist what causes this, she says "stress", when I asked my PCP (which I've since dumped) why I was losing so much hair, she says "stress".
> 
> I live a pretty easy life, don't have to work, easy going husband, not in debit etc,,,,don't consider myself to be stressed out.
> 
> Well, my latest blood work now shows that I have Hashimotos Disease. I'm guessing if I ask why I have this, the answer will be "stress".  I really dislike that answer for everything!!  Seems like a copout to me
> 
> Just wanted to vent a bit, thanks for listening.



You know, sometimes I really dislike doctors.  That is such a ridiculous answer.  While stress can exacerbate conditions and extreme stress can certainly cause your body harm, sometimes organs just fail.  Hashimotos is an autoimmune disorder and you are genetically predisposed to that.  There are millions of people with thyroid disorders of all sorts and I really don't believe that everyone is "stressed."  I do believe that genetics and environmental factors (general diet, overall health, etc) play a bigger factor then just being a little whigged out here and there.


----------



## desamnik

I appreciate your response, I agree, sometimes I just don't like them either...

Of course when I see her again, I'll just look confrontantional if I say, so....I guess my hypo thyroid and hair loss may not have been caused by "stress" after all,  

Well, maybe they will take me a little more seriously now, I don't know....


----------



## angwill

mrsklamc said:


> Probably. I do have some hope though:
> 
> http://online.wsj.com/article/SB10001424127887324883604578398791568615644.html
> 
> Even though it is statistically unlikely, I'm still holding out hope we're in that margin of error. Never prayed so much for anything in my life.
> 
> We'll decide on further testing after we speak with the Maternal Fetal Med specialist again.



You and your baby are in my prayers too.

Ang


----------



## angwill

luvmarypoppins said:


> angwill - I am so glad you are home from the hosp and that you seem to be doing really well. So good you didnt have much bleeding.
> 
> The voice will come back in time. Just dont push it.
> 
> My voice is still not good at times but I had so much surgical trauma and damage. Glad you didnt read this whole thread or you would have seen that I almost died during my surgery and was in a coma. And my dr. does over 100 of these a year! But my ca was pretty huge and spread.
> 
> Well onto the next step for you. The wonderful diet. I dont know if you are going the withdrawl route (cant help you there as I had thyrogen or the thyrogen route).
> 
> I think we will all tell you to do the diet.
> 
> Its a good time to do it as there are many fresh fruits and vegetables you can pick from.
> 
> Micayla has a lot of yummy ideas.
> 
> Christine has one of her recipes in the LID  cookbook.
> 
> My LID was really restrictive. It was a combination of the thyca lid, the nih diet and my radiation oncologists own diet.
> 
> They say most people lose 10 lbs. on the diet.
> 
> So now you wait to see what type you have and how much rai you are getting, but in the meantime rest up!
> 
> So glad you are home. Take it easy, One day at a time.



Well I realize I can not raise my voice at all.  I guess it is good there is no need to shout anyway.  I told the doctor to be careful with the voice since I have to sing DH to sleep at night. lol  It doesn't seem too bad now but a bit lower.  

I am glad I did not read of going into a coma because I was majorly stressed out and begging for the chicken exit at the operating room door.  At least I made them laugh. lol 

My doctors do the withdawl route not thyrogen.  I did ask about it though.  I will wait till my levels go down to start the diet and I will make a money bet I gain and not lose since my motabolism is screwed up big time.  How many weeks of diet is normal?  I never was one to use salt while cooking or anything but it is in everything anyway. 

I am glad after all your trauma things turned out well for you.  

Ang


----------



## luvmarypoppins

desamnik said:


> for 3 years and being on meds for a year or so, I asked the endocronologist what causes this, she says "stress", when I asked my PCP (which I've since dumped) why I was losing so much hair, she says "stress".
> 
> I live a pretty easy life, don't have to work, easy going husband, not in debit etc,,,,don't consider myself to be stressed out.
> 
> Well, my latest blood work now shows that I have Hashimotos Disease. I'm guessing if I ask why I have this, the answer will be "stress".  I really dislike that answer for everything!!  Seems like a copout to me
> 
> Just wanted to vent a bit, thanks for listening.



So sorry you had to deal with all of that. My pcp was a totally poor diagnostician too. He just couldnt put all the puzzle pieces together about me either. He said its was good I was losing weight without dieting, that my itchy skin was an allergy (It was actually a bad b12 deficiency etc.), Even in the hospital he never had a specialist look at the one lump in my neck. Guess if he did he would have actually figured out I had cancer etc.

Well glad you got on the right track with the blood tests. I am seeing we have to advocate more for ourselves these days with healthcare.


----------



## luvmarypoppins

angwill - christine and micayla can tell you about withdrawl and anyone else who went that route. 

The diet should be 2 weeks. The others were allowed to have things that I was not like regular water. I could only have distilled. 

My advice is to eat what you really love before the diet, especially anything that is carbs or dairy because they are really restricted on the diet. I missed yogurt so much etc. 

My normal lid diet was - banana for breakfast. A few times I gave in to the oatmeal. I dont really like it so I drowned it with pure maple syrup, walnuts, pecans, blueberries etc. I cooked it in the crockpot with cinnamon and apples too.

I liked to mix things up on the plate for color. If I was lazy I used the steamfresh no sauced vegetables. 

My treat were the little bags of craisins, popcorn in the microwave in a brown paper bag, and matzoh (Thank God for living in NY - readily available) with natural peanut butter and nuts.

I also used no yolk noodles alot because I was really not allowed to have regular pasta. 

Its not as bad as it sounds. If you like cooking or have a wonderful Prince Charming like Micaylas dh who actually cooked for her. My dh would burn water

For chinese food I just grilled chicken breast with orange marmalade and had the basmati rice (only one allowed for me) and some steamfresh veg. 

So also if you like shrimp, fish etc, eat it now. 

My ds loved me not having my voice. I had to clap for everyone if I needed something etc. 

I am just thankful I am still alive. They said most people dont live after what happened to me. Also because of the cancer my surgeon had to cut my accessory nerve so I cant feel up to my L ear and I really cant use my L arm well from the elbow up but its all good. You just adjust. Also one of my vocal chords got bruised and then I had even more surgical trauma to my throat after I had to have an emergency bowel resection like a few days before I was suppose to start the diet, so there went the voice again. It still is not good at times. I have had many scopes and tests. It looks good on the inside they say but it gets tired alot. 

So rest up and dont push the voice.


----------



## Christine

angwill said:


> My doctors do the withdawl route not thyrogen.  I did ask about it though.  I will wait till my levels go down to start the diet and I will make a money bet I gain and not lose since my motabolism is screwed up big time.  How many weeks of diet is normal?  I never was one to use salt while cooking or anything but it is in everything anyway.
> 
> Ang



Since I had thyroid cancer in the "dark ages" of the 1990s, there was no Thyrogen and I did withdrawal scans about 4 times.  The first one is generally not too bad because you actually do have some working thyroid remnant in your body.  

I didn't do the diet until later years because it wasn't invented when I was first treated.  All they told me was to stay away from fast food for a week or so.

The diet usually goes for 2 weeks--the first week is practice and the second week is for "real" at least that's what one of the thyca.org doctors said.  It takes about a week for the excess iodine to leave your body so 2 weeks is a bit overkill.  I was told that if you are REALLY good about the diet, that one week is sufficient.  

I haven't had to do it for awhile so luvmarrypoppins will have better guidance for you.  There is also a LID cookbookd on the Thyca website so you can get some ideas.  

If you can, make up a bunch of food now and freeze it.  You will not feel like cooking during the time that you need to be on the diet since you will be truly hypo.

Every time I went hypo, I gained about 10 pounds but then lost it quickly once my meds were stabilized.  I never felt like it was true "fat" or weight that I gained but more like fluid.  The only exception was on the LID and then I did not gain weight at all.  When I did the LID while using Thyrogen, then I lost about 6 lbs.


----------



## SingingMom

Christine said:


> Since I had thyroid cancer in the "dark ages" of the 1990s, there was no Thyrogen and I did withdrawal scans about 4 times.  The first one is generally not too bad because you actually do have some working thyroid remnant in your body.
> 
> I didn't do the diet until later years because it wasn't invented when I was first treated.  All they told me was to stay away from fast food for a week or so.
> 
> The diet usually goes for 2 weeks--the first week is practice and the second week is for "real" at least that's what one of the thyca.org doctors said.  It takes about a week for the excess iodine to leave your body so 2 weeks is a bit overkill.  I was told that if you are REALLY good about the diet, that one week is sufficient.
> 
> I haven't had to do it for awhile so luvmarrypoppins will have better guidance for you.  There is also a LID cookbookd on the Thyca website so you can get some ideas.
> 
> If you can, make up a bunch of food now and freeze it.  You will not feel like cooking during the time that you need to be on the diet since you will be truly hypo.
> 
> Every time I went hypo, I gained about 10 pounds but then lost it quickly once my meds were stabilized.  I never felt like it was true "fat" or weight that I gained but more like fluid.  The only exception was on the LID and then I did not gain weight at all.  When I did the LID while using Thyrogen, then I lost about 6 lbs.



I too was treated in the dark ages. ;-)

The withdrawal for me was worse than anything. The aches and pains in my legs were horrible.  If you do have this, know it is only temporary!!

"SingingMom" ....Sent from my iPad using DISBoards


----------



## mrsklamc

Count me in as 'the withdrawal was the worst part.'

The only instructions for me were the ones in the thyca cookbook. I had to do it for two weeks before and a week after, and then another week when someone did the wrong lab (tsh instead of thyroglobulin.) 

If I were you I would push back on the thyrogen issue- tell them it's your understanding that it's common practice now and why specifically do they think you should do withdrawal.

Of course last I checked it was like $900 so that's an issue too.


----------



## desamnik

I have a couple of questions that maybe someone here may know the answer to.  

I've been on thryoid meds for about a year, I've been on Armour Thyroid for four months.  

My latest blood work showed, that a, i am taking too much, b, i have Hashimotos, there was one other test done, not sure what it was, but those numbers were off also.

So, I guess  I'm confused as to why I still have such bad blood work results if I've been taking my medicine?

and the other question I have is does the Armour help with all the other symptoms of Hashimotos?  Some things i notice are fatigue, trouble swallowing, hair loss, pain in hands, legs and arms, and forgetfullness.

Thank you for any information.


----------



## angwill

I am already in withdawl.  I was hypothyroid and hoshimotos before they took out the thyroid and my thyroid was not functioning at all without the meds anyway.  The day of surgery they took me off meds and said some people take months to get their THS up to at least 30 said the endo and 50 said the surgeon.  That is when I would start the diet and then have the RAI.  I am already feeling dead to the world.  I had a hard time sleeping more than 4 hours before the surgery and now I can barely function with 10 hours sleep and I still keep wanting to curl up in bed.  This is after 5 day.  I get cramping in my abdomin as well.  I go for follow up visits the 15th with the endo and 16th with the surgeon.  I will mention the thyrogen to the endo when I see him but he is the one who said they don't do it and also the one who said no diet is needed but if I wanted to do it I could.  I wish I lived in a more populated area as it is I drive almost an hour to see the endo and he is the only one who knows thyroid issues.  I am trusting though since my surgeon was so great and he refered me to the endo.  I am also grateful that they even take cash payers on a payment plan since no others here will.  

Does anyone know if individual packets of flavored oatmeal are allowed or just plain container oatmeal?  I will have to get some if packets are not allowed.  I did order some Matzos on the internet since there are none in any store around us.  I got some natural peanut butter and different jelly.  We always have lots of fruit and veges so that will be easy.  I wonder if I can just sleep for two weeks and not eat? lol  

As for the weight I went into the hospital 10lbs less than I came out and it had to be the IV fluids.  I wanted to cry because I was so careful with calories and carbs when ordering at the hospital.  I really hope they this motabolizm issue fixes itself when my levels are regulated.  

Thanks for all the advice and if you can think of anything else foods or how you made it through the withdrawl I would appreciate it.  

Ang


----------



## luvmarypoppins

ang - make sure the matzoh is unsalted

Do you have a bread machine? I think Micayla made bread? She could help on that one. Then you could have pb and j and maybe chicken etc. like an actual sand. hmm, banana cinnamon toast?

Also I was allowed to have  sorbet but check the labels for the allowed ingredients. I think I found a hagen das one that was ok

Nothing with carragean so read your labels

I had a dietician work with me. Thought it was covered under my ins. I didnt seek her out. The hospital said I had to use her. That cost like $112 but worth it. I was always calling her up and asking questions. 

Bread products. She told me nothing with packages because it usually contains a bromated agent that is used in processing? Then she said if I found unsalted crackers I could have them? I never did find them with all the right ingredients. I didnt understand this.

So that is with the oatmeal. She told me to use the quaker in the can but in the crockpot I used the steel cut oats because they cook better etc. 

Just mix it up so it doesnt get boring. Like you dont want to eat a salad every day for lunch etc. I made a veg/chicken soup with the steam fresh veg and no yolk noodles. I made stock from cooking a whole chicken etc. 

At the end I was feeling tired and sick so I think 2 days for lunch I just dipped carrot sticks and celery in the pb. 

I never cheated on the diet etc. because I wanted to give myself the best chance of having the rai work because they knew I had a rare and aggressive variant of pap and they already told me the one guy who had it had his come back in 3 months post rai etc.

I have seen some people say beans are allowed if you soak them yourself etc. I was told no beans whatsoever. Add ruhbarb and I think kale to that too? No, NO.  No potato skins either. 

I know Micayla found a no salt ketchup. 
If you like nuts you can snack on unsalted almonds, pecans,walnuts etc. 
So you could make a salad with chicken, walnuts, raspberries etc. 

I agree with Christine to maybe make yourself stuff now if you know you are getting tired etc. and freeze it. Also use the crockpot as your friend too.
You could even make applesauce in it etc. 

I made a beef stew type thing and that lasted for a couple of meals. 

Like my mock spaghetti would be the no yolk noodles, the 3 ounces of beef, fresh tomatoes and peppers and onion if you wanted. You could add fresh basil.

You could make a stuffed pepper with the beef (3 ounces), the basmati rice and maybe corn? 

I did the maple pork chop, sweet potato and peas or green beans. I like different colors.

Maybe write down a little menu plan. That way if you are too sick to cook then maybe someone could cook it for you too. 

If you like mexican food you could do grilled lime chicken with cilantro, corn etc. and the rice. Make a homemade salsa and use the matzoh to dip.

Cucumbers and fresh dill - close as possible to pickles etc.

Take your tastes into consideration too. Bland versus spicy etc.

Micayla - you need to share your favorite recipes too. Prayers for you because you know we gotta pray without ceasing!


----------



## Christine

Hopefully it won't take you too long to get to a high TSH.  I was at 140 after 6 weeks!!!  They wanted it to be sky high so there was no letting me go in with a TSH of 50.  The higher your TSH, the better the RAI works.


----------



## angwill

Oh great and the endo who is the specialist is saying to do RAI at 30 with no diet.  I am losing faith.  Maybe I will be really high when I see him in two weeks and then talk him into giving me two more to do the diet.

The Motzoh I got does not say unsalted on the box but it shows 0 sodium and the ingredients say only wheat flour and water.  They better be ok because they were not cheap. lol 

I don't have a bread machine not have I ever made bread.  Unfortunately, I also have a husband that burns water. lol  

I think I can make it a couple weeks without sorbet but will look for the hagen das. 

Thank God I have you Marry Poppins because after I pay the specialists in two weeks I will not have money left for a dietician.  

I will look for the steel cooked oats for oatmeal then.  Do you know the croc pot recipie?  

I wish I was more creative in the kitchen like you.  I am going to be so sick of the diet by the end of it.  I hate to admit it but I am one of the worlds pickiest eaters to the point I would rather starve than get sick from eating something that I don't like.  I have a feeling I am just going to have to suck it up and eat mostly fruit and veges all week.  I will have my motzoh and unsalted peanut butter and jelly and oatmeal if I can't eat any more of the fresh stuff.  

Thanks so much for all the tips.  I really want to do this right because I do not want to have to ever do it again.  

I am sorry to hear you had a rare form of pap.  How long ago was it and has it stayed away?


----------



## angwill

With the RAI are you supposed to put vinyl over matresses and pillows?  Plastic baggies over everything?  I have no clue what to do during that since we only have one bathroom it could be an issue.  

Thanks for advice there too.

Ang


----------



## luvmarypoppins

ang - hmm, some rai stuff for your reading enjoyment. 

Do you live more than 1 hour from the hosp where you are getting the rai. They say the car ride home shouldnt be more than an hour and you have to sit in the back.

Make sure they give you some kind of anti emetic/aniti nausea pill before you swallow the rai

rai precautions - I think the first day is 10 to 12 feet away from someone? Then the next days are less

You need your own non disposable plate, cup  bowl,spoon and utensils which you should wash yourself after each meal.

Sorry going a little overboard but I was told better safer than sorry.

See in your signature. If you have pets they have to go for the week. Pet hair can get the rai in it etc.

You cannot walk around your carpet with bare feet. Socks at all time etc.

If you are sharing a remote with your dh or the computer etc electronics. You should wear rubber gloves I was told as the sweat goes on it.

I have read some people say they wear their junkiest clothes all week and then throw them out.

Honestly I kept all my stuff and just washed it at the end. Just strip your bed and wash everything. I didnt do a plastic sheet. However in the hospital I had one I think for the overnight stay. The whole room was covered in blue plastic. 

If you are sharing only one bathroom you still have to double flush the toilet each time and clean it for any spills etc. I think they said let the shower run for a while after you use it?? Of course dont share soap etc. 

Your dh will be banished to the couch for a week. 

I was told no cooking and prepping food except for yourself the week of rai because you shouldnt be in close contact with someone else etc. 

It seems overwhelming but if you know stuff beforehand and you can ask your own dr questions too its ok. 

Also you feel so sick after the rai you dont really want to eat anything anyway. Christine said its radiation gastritis. I think I remember having to run to the bathroom every time I ate something and feeling queasy. 

Its just funny how stuff varies from drs. to drs. etc. Mine are so super strict about everything. I know they said they were even fined by the something dept. for not being radiation compliant with something? 

Micayla  chime in on this - sodium on label is not the same as no salt right? Sorry brain fog here. You need to look for no salt right?

ang - ask us any question you want. Hang in there.


----------



## angwill

luvmarypoppins said:


> ang - hmm, some rai stuff for your reading enjoyment.
> 
> Do you live more than 1 hour from the hosp where you are getting the rai. They say the car ride home shouldnt be more than an hour and you have to sit in the back.
> 
> Make sure they give you some kind of anti emetic/aniti nausea pill before you swallow the rai
> 
> rai precautions - I think the first day is 10 to 12 feet away from someone? Then the next days are less
> 
> You need your own non disposable plate, cup  bowl,spoon and utensils which you should wash yourself after each meal.
> 
> Sorry going a little overboard but I was told better safer than sorry.
> 
> See in your signature. If you have pets they have to go for the week. Pet hair can get the rai in it etc.
> 
> You cannot walk around your carpet with bare feet. Socks at all time etc.
> 
> If you are sharing a remote with your dh or the computer etc electronics. You should wear rubber gloves I was told as the sweat goes on it.
> 
> I have read some people say they wear their junkiest clothes all week and then throw them out.
> 
> Honestly I kept all my stuff and just washed it at the end. Just strip your bed and wash everything. I didnt do a plastic sheet. However in the hospital I had one I think for the overnight stay. The whole room was covered in blue plastic.
> 
> If you are sharing only one bathroom you still have to double flush the toilet each time and clean it for any spills etc. I think they said let the shower run for a while after you use it?? Of course dont share soap etc.
> 
> Your dh will be banished to the couch for a week.
> 
> I was told no cooking and prepping food except for yourself the week of rai because you shouldnt be in close contact with someone else etc.
> 
> It seems overwhelming but if you know stuff beforehand and you can ask your own dr questions too its ok.
> 
> Also you feel so sick after the rai you dont really want to eat anything anyway. Christine said its radiation gastritis. I think I remember having to run to the bathroom every time I ate something and feeling queasy.
> 
> Its just funny how stuff varies from drs. to drs. etc. Mine are so super strict about everything. I know they said they were even fined by the something dept. for not being radiation compliant with something?
> 
> Micayla  chime in on this - sodium on label is not the same as no salt right? Sorry brain fog here. You need to look for no salt right?
> 
> ang - ask us any question you want. Hang in there.



Thank you for all this great info.  I looked ups stuff but everyone seems to do it different and I just want to do it the best way.  

I am going to miss my dog the most.  She is who I cuddle with when I don't feel good.  She will be stuck at the vet for a week it seems.  

I was going to drive myself home is that  no no?  I dont' want to expose anyone and we are about an hour from the hospital unless we drive super fast and risk a ticket.  There is nowhere closer.  

Here I was thinking disposable plates and utensils would be best and easiest.  Wearing socks is going to be hard and I will be kicking them off in my sleep. lol  

The rest seems doable.  Oddly enough my sugeons nurse suggested going to stay with an elderly relative, I have none around me.  Or she said go to a hotel and ask for a room at the end of a hall away from everyone.  Mostly because I only have the one bathroom and I have an 18 year old son that she said I should not be around.  There really should be a standard for how they do this stuff and rules to follow.  Oh and a friend of mine got me two hospital gowns to use during RAI and then she said burn them after.  I really need to keep researching this stuff before the time comes.  I want this all gone for good and forever no matter what I have to do to accomplish that.


----------



## SingingMom

I really don't understand this?  20 years ago they told me I had to be in ISOLATION in the hospital for a WEEK!  One of the many reasons I did NOT go through with it, but my situation was different. 

"SingingMom" ....Sent from my iPad using DISBoards


----------



## angwill

SingingMom said:


> I really don't understand this?  20 years ago they told me I had to be in ISOLATION in the hospital for a WEEK!  One of the many reasons I did NOT go through with it, but my situation was different.
> 
> "SingingMom" ....Sent from my iPad using DISBoards



From what I am gathering on the internet it seems it depends on how environmentally friendly each state and country is.  Germany makes you stay in the hospital for I think 3 days.  Florida I think is one or two nights.  IL is go home see ya wouldn't want to be ya. lol  I am still researching.  To be honest I would rather be in the hospital and isolated than risk my home and family to radiation.  Then again I can not imagine how much that bill would be?

Ang


----------



## SingingMom

angwill said:


> From what I am gathering on the internet it seems it depends on how environmentally friendly each state and country is.  Germany makes you stay in the hospital for I think 3 days.  Florida I think is one or two nights.  IL is go home see ya wouldn't want to be ya. lol  I am still researching.  To be honest I would rather be in the hospital and isolated than risk my home and family to radiation.  Then again I can not imagine how much that bill would be?
> 
> Ang



I was in NJ. Again, we are talking 20 years ago.  The hospital isolation idea gave me the creeps because they said they leave your food at the door and visitors can wave through the window. No contact with anyone.   Hard to believe one state would treat you like a radioactive leper and another tell you flush twice and be careful!

"SingingMom" ....Sent from my iPad using DISBoards


----------



## mrsklamc

Sorry- I need to figure out why I'm not getting regular updates on this thread. Somehow I seem to have changed it to a daily digest. 

Anyway- As far as radiation goes, they said for me to sit in the back right hand side of the car on the way home so as far as DH as possible. There is NO way I could have driven myself when I was that hypo. They said he had to sleep 10 feet away from me and use a separate bathroom if possible, still flushing twice though, and I think I used disposable utensils for a week. They said animals weren't a problem unless they weren't fully grown. 

Food- when I was hypo DH was just desperate to find anything I would eat; I really wanted dairy (cheese, ice cream, etc) which was totally off limits. We did guacamole to try and mimic that creamy texture along with no salt tortilla chips from Trader Joes. (If you are that remote you may not have TJ's but maybe you can make tortilla chips at home?) We also did home made salsa and DH made sorbet for me from fresh strawberries and sugar. The no salt ketchup was Heinz brand and we just stirred non-iodized salt into it (it's terrible otherwise.) LMP is right, sodium as an ingredient is not the same as salt. Food cravings weren't as horrible with the thyrogen but I had a lot of craisins on celery with no-salt peanut butter. I had a lot of 'Lunch in Foil' from the LID cookbook, because it was hard for me to know if chicken in a regular grocery store had been salted (if you read the label they mostly say 'broth' and that could be salt.) A friend bought a whole chicken from whole foods and made me chicken soup for the second round, which was good because I was so nauseous I couldn't keep much else down for a week. 

LMP- I am definitely praying without ceasing, like I never have! Appreciate your prayers!


----------



## angwill

SingingMom said:


> I was in NJ. Again, we are talking 20 years ago.  The hospital isolation idea gave me the creeps because they said they leave your food at the door and visitors can wave through the window. No contact with anyone.   Hard to believe one state would treat you like a radioactive leper and another tell you flush twice and be careful!
> 
> "SingingMom" ....Sent from my iPad using DISBoards



It does seem odd doesn't it.  I did see a utube video of a lady in isolation with the RAI but I am not sure what state she was in.  In her room there was a wall so many feet from her and her guests could come and sit in a seat behind the wall and talk to her.  That is where they put her food as well.  I think she was there 3 nights.  It is odd how one state could care less and another goes over protective.  I think an inbetween is a good idea.


----------



## angwill

mrsklamc said:


> Sorry- I need to figure out why I'm not getting regular updates on this thread. Somehow I seem to have changed it to a daily digest.
> 
> Anyway- As far as radiation goes, they said for me to sit in the back right hand side of the car on the way home so as far as DH as possible. There is NO way I could have driven myself when I was that hypo. They said he had to sleep 10 feet away from me and use a separate bathroom if possible, still flushing twice though, and I think I used disposable utensils for a week. They said animals weren't a problem unless they weren't fully grown.
> 
> Food- when I was hypo DH was just desperate to find anything I would eat; I really wanted dairy (cheese, ice cream, etc) which was totally off limits. We did guacamole to try and mimic that creamy texture along with no salt tortilla chips from Trader Joes. (If you are that remote you may not have TJ's but maybe you can make tortilla chips at home?) We also did home made salsa and DH made sorbet for me from fresh strawberries and sugar. The no salt ketchup was Heinz brand and we just stirred non-iodized salt into it (it's terrible otherwise.) LMP is right, sodium as an ingredient is not the same as salt. Food cravings weren't as horrible with the thyrogen but I had a lot of craisins on celery with no-salt peanut butter. I had a lot of 'Lunch in Foil' from the LID cookbook, because it was hard for me to know if chicken in a regular grocery store had been salted (if you read the label they mostly say 'broth' and that could be salt.) A friend bought a whole chicken from whole foods and made me chicken soup for the second round, which was good because I was so nauseous I couldn't keep much else down for a week.
> 
> LMP- I am definitely praying without ceasing, like I never have! Appreciate your prayers!



I think I am going to feel better keeping the dog away for at least 3-4 days.  I believe I was told 3 days away from everyone.  I will see how I feel when I am that hypo and driving.  My husband is starting a new job and I don't think they are going to be too thrilled if he has to take time off so I don't know what we will do.  I wish we were closer to the hospital.  

I will have to make a trip to TJ's which is a couple hours away when I can before I get really bad into the hypo.  I can just imgine my walking mindlessly around the store not knowing what I came for. lol  I am going to have to make some spaghetti sauce here soon before my mind is too gone on how to make it.  I did find the no salt ketchup and non iodized salt. I mentioned the sodium for the Matzoh crackers I found it showed no sodium and the only ingredients showing were flour and water.  I am assuming that even though it does not state unsalted on the box that they are unsalted if only listing those two ingredients and no sodium.  When I searched unsalted matzohs the ones I bought did come up on Amazon.  I am not one who cares for salt on or in anything so I have a feeling the non salted ketchup and stuff will be fine for my pallet.  I wish they would test my iodine levels and I might ask because I have a feeling I might not have a very high level anyway.  When you buy deboned chicken breasts at the store they put broth on them?  That seems silly. lol  I never knew that.  Thanks for all the tips.  Any other TJ's food that works?


----------



## angwill

mrsklamc said:


> Singing mom- they are talking about the Low Iodine Diet for cancer patients.
> 
> Tests came back 99% for Down's. I'm pretty heartbroken. My DH is unfazed though. Not much rattles him.



Your baby and family are still in my prayers, I didn't forget about you.


----------



## Christine

angwill said:


> When you buy deboned chicken breasts at the store they put broth on them?  That seems silly. lol  I never knew that.  Thanks for all the tips.  Any other TJ's food that works?



Most chicken is put in a "solution" that is a sodium solution.  They soak it in that before packaging.  The "safe" chicken is sold at Whole Foods.  Empire, which is a kosher brand, is also safe to use (and it's good chicken too!!).


----------



## angwill

Christine said:


> Most chicken is put in a "solution" that is a sodium solution.  They soak it in that before packaging.  The "safe" chicken is sold at Whole Foods.  Empire, which is a kosher brand, is also safe to use (and it's good chicken too!!).



Our closest Whole Foods is many hours away sadly.  I guess I will be meat free for the week too.    I wonder if that is why the endo in this area doesn't bother to suggest the LID diet since unless you are going with strictly fruits and veges there is nothing else for you in the area?

I did find out something wonderful today that all Trader Joe brand foods in their store use uniodized salt in anything with salt.  I will have to hit up TJ and maybe they will have their own brand of fresh chicken?  I will just have to make sure there is not red #3, sea salt or any dairy in their brand product.


----------



## luvmarypoppins

Honestly I did not stress out abut the meat. I didnt even talk to the butcher at the local grocery store. 

I was just told to not buy the prepackaged chicken stuff that had sauce with it.

I know they are aware of meat prep stuff that is why the limit you to 3 or 4 ounces for those 2 meals a day.

Its not a no iodine diet, its a low iodine diet. So I think its standard for the reg. meat consumption to be like that. You have to have protein etc.

Oh and I am going to the endo next monday. oh joy!


----------



## Christine

angwill said:


> Our closest Whole Foods is many hours away sadly.  I guess I will be meat free for the week too.    I wonder if that is why the endo in this area doesn't bother to suggest the LID diet since unless you are going with strictly fruits and veges there is nothing else for you in the area?
> 
> I did find out something wonderful today that all Trader Joe brand foods in their store use uniodized salt in anything with salt.  I will have to hit up TJ and maybe they will have their own brand of fresh chicken?  I will just have to make sure there is not red #3, sea salt or any dairy in their brand product.



Look, I never shop at Whole Foods.  Too far and too expensive.  My TJs does carry the Empire brand.  Also, many regular grocery stores carry the "natural" line of meat, sometimes organic, and it is without the solution.  Sometimes they call it "air chilled" or something like that.  It's a bit more expensive; however, I do think it does taste better.


----------



## SingingMom

Christine said:


> Look, I never shop at Whole Foods.  Too far and too expensive.  My TJs does carry the Empire brand.  Also, many regular grocery stores carry the "natural" line of meat, sometimes organic, and it is without the solution.  Sometimes they call it "air chilled" or something like that.  It's a bit more expensive; however, I do think it does taste better.



Our regular grocery stores sell Empire. They also have separate Kosher sections in the butcher department. Of course, I am in the NY/NJ area. I have never lived in a less populated area. Sometimes I wish I did, then I think how spoiled we are with "conveniences"! Lol

"SingingMom" ....Sent from my iPad using DISBoards


----------



## Christine

SingingMom said:


> Our regular grocery stores sell Empire. They also have separate Kosher sections in the butcher department. Of course, I am in the NY/NJ area. I have never lived in a less populated area. Sometimes I wish I did, then I think how spoiled we are with "conveniences"! Lol
> 
> "SingingMom" ....Sent from my iPad using DISBoards



Living in VA, it's really hit or miss with Empire.  Our Wegman's sells a very small selection.  They used to have a whole kosher section but apparently it's not sought after enough.  TJs is the only place around here that seems to carry a big selection of Empire.  I can see where other parts of the country wouldn't have it all.


----------



## dannirose

So glad I found this thread! I need to go back and read thorugh it but I was just (finally) correctly diagnosed after more than a year of tests and problems.  I have hypothyroidism and endometriosis and am just getting started on the journey to "better".  It's so comforting knowing I have a place I can turn to for more information and understanding from others who have been there.


----------



## luvmarypoppins

dannirose said:


> So glad I found this thread! I need to go back and read thorugh it but I was just (finally) correctly diagnosed after more than a year of tests and problems.  I have hypothyroidism and endometriosis and am just getting started on the journey to "better".  It's so comforting knowing I have a place I can turn to for more information and understanding from others who have been there.



welcome. Glad you finally got the right diag. Hopeyou get to feeling like yourself soon.


----------



## luvmarypoppins

vent coming - oh yeah, this deserves its own post.

I just saw on the internet that my wonderful, yeah right, who are we kidding here. The surgeon who almost killed me with his surgical mistake or at least whatever person was in the or with him etc....

well...he is one of the tops doctors here where I live. WTH????

This is a really prestigious award. Umm, I cant believe they gave this to him. He is one of several in 2 counties.  Not just because of me. I know what he did to a lady at my church. He just kept chopping her up when she had cancer too (different kind) and she was suffering etc.  She was old and I didnt even mention to her that he almost killed me. I said oh you will love him etc. yeah right. 

Hmm, if I have to go back to this guy I guess I will mention that to him. Honestly I hope I never see him again, but I know my dh doesnt want to drive all the way into NYC if things ever change in the future etc. 

Right now I am  and


----------



## angwill

First I will start with some bad news for those on Levothroid there are reports that Forrest the manufacturer is dicontinuing the medication.  I guess they can't make enough money off it so screw those who need it.  http://www.ashp.org/DrugShortages/NotAvailable/Bulletin.aspx?id=1041 
Levothyroxine (Levothroid) Oral Tablets
[11 July 2013]

Products Affected - Description
Levothroid tablets, Forest
25 mcg, 100 count bottle (NDC 00456-1320-01)- discontinued
25 mcg, 1000 count bottle (NDC 00456-1320-00)- discontinued
50 mcg, 100 count ottle (NDC 00456-1321-01)- discontinued
50 mcg, 1000 count bottle (NDC 00456-1321-00)- discontinued
75 mcg, 100 count bottle (NDC 00456-1322-01)- discontinued
75 mcg, 1000 count bottle (NDC 00456-1322-00)- discontinued
88 mcg, 100 count bottle (NDC 00456-1329-01)- discontinued
88 mcg, 1000 count bottle (NDC 00456-1329-00)- discontinued
100 mcg, 100 count bottle (NDC 00456-1323-01)- discontinued
100 mcg, 1000 count bottle (NDC 00456-1323-00)- discontinued
112 mcg, 100 count bottle (NDC 00456-1330-01)- discontinued
112 mcg, 1000 count bottle (NDC 00456-1330-00)- discontinued
125 mcg, 100 count bottle (NDC 00456-1324-01)- discontinued
125 mcg, 1000 count bottle (NDC 00456-1324-00)- discontinued
137 mcg, 100 coun bottle (NDC 00456-1331-01)- discontinued
137 mcg, 1000 count bottle (NDC 00456-1331-00)- discontinued
150 mcg, 100 count bottle (NDC 00456-1325-01)- discontinued
150 mcg, 1000 count bottle (NDC 00456-1325-00)- discontinued
175 mcg, 100 count bottle (NDC 00456-1326-01)- discontinued
175 mcg, 1000 count bottle (NDC 00456-1326-00)- discontinued
200 mcg, 100 count bottle (NDC 00456-1327-01)- discontinued
200 mcg, 1000 count bottle (NDC 00456-1327-00)- discontinued
300 mcg, 100 count bottle (NDC 00456-1328-01)- discontinued
300 mcg, 1000 count bottle (NDC 00456-1328-00)- discontinued


Reason for the Shortage
Forest discontinued Levothroid tablets in July 2013 because contract manufacturer could no longer supply product.

Available Products
There are multiple levothyroxine and AB-rated levothyroxine oral tablets available.

Estimated Resupply Dates
Levothroid tablets are discontinued.

Related Shortages


Thanks for the news on the Empire chicken and I guess that could be the one thing I choose not to sweat if I can't find it.  

LMP, That is awful about your sugeon and I bet those who work with him know of his flaws too.  Although we all make mistakes if we continue to make them over and over there is somthing seriously wrong especially if we are a surgeon.  

Dannirose, Welcome I hope you find the info you need here.  

Now I need to say I can not believe I have only been off my levothyroxine for a week and I already feel like the walking dead and I think I am becoming depressed because I just want to cry thinking of feeling worse than I do.  I just needed to vent that to people who have been there. 

Ang

Just found another article about all thyroid med prices going up due to these issues.  http://thyroid.about.com/b/2013/08/...tinues-synthroid-and-tirosint-prices-rise.htm


----------



## Christine

angwill said:


> First I will start with some bad news for those on Levothroid there are reports that Forrest the manufacturer is dicontinuing the medication.  I guess they can't make enough money off it so screw those who need it.  http://www.ashp.org/DrugShortages/NotAvailable/Bulletin.aspx?id=1041
> Levothyroxine (Levothroid) Oral Tablets
> [11 July 2013]
> 
> Products Affected - Description
> Levothroid tablets, Forest
> 25 mcg, 100 count bottle (NDC 00456-1320-01)- discontinued
> 25 mcg, 1000 count bottle (NDC 00456-1320-00)- discontinued
> 50 mcg, 100 count ottle (NDC 00456-1321-01)- discontinued
> 50 mcg, 1000 count bottle (NDC 00456-1321-00)- discontinued
> 75 mcg, 100 count bottle (NDC 00456-1322-01)- discontinued
> 75 mcg, 1000 count bottle (NDC 00456-1322-00)- discontinued
> 88 mcg, 100 count bottle (NDC 00456-1329-01)- discontinued
> 88 mcg, 1000 count bottle (NDC 00456-1329-00)- discontinued
> 100 mcg, 100 count bottle (NDC 00456-1323-01)- discontinued
> 100 mcg, 1000 count bottle (NDC 00456-1323-00)- discontinued
> 112 mcg, 100 count bottle (NDC 00456-1330-01)- discontinued
> 112 mcg, 1000 count bottle (NDC 00456-1330-00)- discontinued
> 125 mcg, 100 count bottle (NDC 00456-1324-01)- discontinued
> 125 mcg, 1000 count bottle (NDC 00456-1324-00)- discontinued
> 137 mcg, 100 coun bottle (NDC 00456-1331-01)- discontinued
> 137 mcg, 1000 count bottle (NDC 00456-1331-00)- discontinued
> 150 mcg, 100 count bottle (NDC 00456-1325-01)- discontinued
> 150 mcg, 1000 count bottle (NDC 00456-1325-00)- discontinued
> 175 mcg, 100 count bottle (NDC 00456-1326-01)- discontinued
> 175 mcg, 1000 count bottle (NDC 00456-1326-00)- discontinued
> 200 mcg, 100 count bottle (NDC 00456-1327-01)- discontinued
> 200 mcg, 1000 count bottle (NDC 00456-1327-00)- discontinued
> 300 mcg, 100 count bottle (NDC 00456-1328-01)- discontinued
> 300 mcg, 1000 count bottle (NDC 00456-1328-00)- discontinued
> 
> 
> Reason for the Shortage
> Forest discontinued Levothroid tablets in July 2013 because contract manufacturer could no longer supply product.
> 
> Available Products
> There are multiple levothyroxine and AB-rated levothyroxine oral tablets available.
> 
> Estimated Resupply Dates
> Levothroid tablets are discontinued.
> 
> Related Shortages
> 
> 
> Thanks for the news on the Empire chicken and I guess that could be the one thing I choose not to sweat if I can't find it.
> 
> LMP, That is awful about your sugeon and I bet those who work with him know of his flaws too.  Although we all make mistakes if we continue to make them over and over there is somthing seriously wrong especially if we are a surgeon.
> 
> Dannirose, Welcome I hope you find the info you need here.
> 
> Now I need to say I can not believe I have only been off my levothyroxine for a week and I already feel like the walking dead and I think I am becoming depressed because I just want to cry thinking of feeling worse than I do.  I just needed to vent that to people who have been there.
> 
> Ang
> 
> Just found another article about all thyroid med prices going up due to these issues.  http://thyroid.about.com/b/2013/08/...tinues-synthroid-and-tirosint-prices-rise.htm



Interesting.  I was under the impression that Levothroid had been discontinued years ago.  I used to take it but there was a recall and so I was put on Synthroid.  It came back out but I was doing okay on Synthroid so I didn't go back.  Then I heard that you just couldn't get it.  I know it wasn't available back in April when my Levoxyl was pulled.

This thyroid med stuff is getting pretty scary.  I hear *internet* rumors that some of these manufacturers are pulling out because there is no money to be made in thyroid meds.  They are cheap.  I think they are looking for ways to produce them and make money.  That's a shame.  Don't know if it's true or not.


----------



## mrsklamc

angwill said:


> Your baby and family are still in my prayers, I didn't forget about you.



Thank you.


----------



## luvmarypoppins

Well I am back from the endo

She said all the tests were good. Right now she said she is not too concerned about the tsh number increase. She said that she will recheck the tsh in 6 months as usual, but she said if the number goes up then she might have me take 1/2 of 1 pill once a week???? Has anyone done this? How would this even work out. I only get a 30 day supply at once from my ins. I guess she would have to write it for extra pills? She mentioned upping the dose to 175 and I said no, I did not feel good then (too many heart palpations and going crazy etc). So she has a plan if need be.

Big issues with weight, heart and shortness of breath. Figures. I am the only person still alive in my family, so why am I not surprised considering my parents and my sister died of heart related things.

In about 6 weeks from the rad. onc visit to her visit today I gained like another 8 or 10 lbs. I think. Very unsettling. They are thinking its fluid that I am retaining. I guess my heart is not pumping right etc? She didnt mention it but I am sure she is thinking it. 

Well my medical student today made dh and I laugh. Of course not in front of her. She asked about our last name. Yeah, its a weird one. Everyone always asks about its cultural origin. Dh always just wants to say American. Anyway what made us giggle afterwards was how she was dressed. She had on a pretty short skirt. Lets just say glad she had the white coat over it, but the funniest was she had on these big white high heels and she kept clunking down the hallway. One time it looked like she was gonna fall out of them. We both said to each other she was inappropriately dressed but she was really sweet. 

So the endo is getting me a good internist and then I am sure I will be seeing a cardiologist after that too.  Oh what fun!! More invasive tests. 

Well I think we are going to disney sept. 27 to oct. 3rd so we will work around it. I am trying to work something out with my cousin who will be there then. Hopefully I can see him for a day or two. 

Micayla - thinking of you Prayers for you and wishing you all the best as always.

Check in when you can everyone.


----------



## SingingMom

luvmarypoppins said:


> Well I am back from the endo
> 
> She said all the tests were good. Right now she said she is not too concerned about the tsh number increase. She said that she will recheck the tsh in 6 months as usual, but she said if the number goes up then she might have me take 1/2 of 1 pill once a week???? Has anyone done this? How would this even work out. I only get a 30 day supply at once from my ins. I guess she would have to write it for extra pills? She mentioned upping the dose to 175 and I said no, I did not feel good then (too many heart palpations and going crazy etc). So she has a plan if need be.
> 
> .



I take 112 mg daily, and an extra 1/2 a pill on Sunday. Lol. It gets very crazy to try and explain it when another doctor asks what meds I take and what dosage.  Lol

My insurance dispenses 90 day supply, it works out ok for me.

"SingingMom" ....Sent from my iPad using DISBoards


----------



## Christine

I am prescribed .137 but it is too much for me if I take it all week.  The .125 is not enough for me if I take it all week. So I take .137 for 5 days, I take 1/2 of one on Saturday, and nothing on Sunday.


----------



## angwill

luvmarypoppins said:


> Well I am back from the endo
> 
> She said all the tests were good. Right now she said she is not too concerned about the tsh number increase. She said that she will recheck the tsh in 6 months as usual, but she said if the number goes up then she might have me take 1/2 of 1 pill once a week???? Has anyone done this? How would this even work out. I only get a 30 day supply at once from my ins. I guess she would have to write it for extra pills? She mentioned upping the dose to 175 and I said no, I did not feel good then (too many heart palpations and going crazy etc). So she has a plan if need be.
> 
> Big issues with weight, heart and shortness of breath. Figures. I am the only person still alive in my family, so why am I not surprised considering my parents and my sister died of heart related things.
> 
> In about 6 weeks from the rad. onc visit to her visit today I gained like another 8 or 10 lbs. I think. Very unsettling. They are thinking its fluid that I am retaining. I guess my heart is not pumping right etc? She didnt mention it but I am sure she is thinking it.
> 
> Well my medical student today made dh and I laugh. Of course not in front of her. She asked about our last name. Yeah, its a weird one. Everyone always asks about its cultural origin. Dh always just wants to say American. Anyway what made us giggle afterwards was how she was dressed. She had on a pretty short skirt. Lets just say glad she had the white coat over it, but the funniest was she had on these big white high heels and she kept clunking down the hallway. One time it looked like she was gonna fall out of them. We both said to each other she was inappropriately dressed but she was really sweet.
> 
> So the endo is getting me a good internist and then I am sure I will be seeing a cardiologist after that too.  Oh what fun!! More invasive tests.
> 
> Well I think we are going to disney sept. 27 to oct. 3rd so we will work around it. I am trying to work something out with my cousin who will be there then. Hopefully I can see him for a day or two.
> 
> Micayla - thinking of you Prayers for you and wishing you all the best as always.
> 
> Check in when you can everyone.



I am glad things came back good from the Endo and hope they get those symptoms figured out.  You could be retaining water and that will effect the way your heart feels and maybe a diuretic from the cardio will help with the heart and the water weight.  I do hope you figure it out.  

I know what you mean by the weight I have always had issues despite working out and eating right.  I was hoping once they found the cancer and took care of that it would help but nope not from what I am reading from other thyca survivors.  Blech!!!


----------



## mrsklamc

Just got back from a lovely 4 day trip to Michigan to celebrate my in-laws 40th anniversary. Pretty state! 

I have heard of people taking different doseages on different days but I have not done it myself.


----------



## luvmarypoppins

ang - how are you feeling?  I am sure its not easy going hypo. When will they do a blood test?

Micayla - so glad that you were able to get away. Good to relax and refresh with all you are going through.

Anyone see my little thread on the cb about my dentist? Just gt a letter he is closing up. No one to take over the office. So I called today and my ds is going to get all our family records. And I am getting some money back from the cap I never got finished etc. Good. Now back to the dental drawing board.

ang - dont be surprised if you develop dental issues post rai. It does a number on your teeth too. 

And I also have the wonderful tear duct damage post rai too. 

Christine - I am sure you are busy with all the college stuff. My youngest ds is an orientation leader so he has been at the college all week. He only commutes but they have to practice tours, speeches etc. He said I only know about nursing, how am I gonna explain engineering, theater etc?

Well I am back to my trip planning. Good distraction from all my medical stuff. 

Hope everyone is doing well


----------



## Christine

Yep, I am in FULL college mode.  This past Monday, I moved my DD back to WVU (she's a senior).  I hired some movers to help with getting the stuff out of the storage unit, into the truck, and into her house.   They didn't show up.

Fortunately, I brought my friend with me who can work like a man!!  She is going through a breast cancer scare now and so I think all the hard work took her mind off of it.  We got my DD moved but it was EXHAUSTING.

My son goes on Wednesday.  Should be much easier with all the volunteers.  Then he has 4 days of orientation.  My son said he'd like to be one of the orientation volunteers so maybe he will be doing the same as your son next year.

After that, I think all the quiet is going to unnerve me!


----------



## 3prettyprincesses

Christine said:


> 3prettyprincesses:  if you read above, you will see that a few of us have run into this.
> 
> My pharmacy did not tell me either and when I went to pick up the medication, she pulled it out and showed me it was Synthroid.  *I have an allergy to the povidone filler in Synthroid and I told her I could not use it*.  She volunteered to call my doctor to find a suitable replacement.  She worked with me right there to find one.  For me it is Tirosint.  It is much more expensive but I'm going to have to live with it until Levoxyl comes back into production.
> 
> The medication itself is fine; however, apparently the containers used to ship the Levoxyl were giving off a foul odor and making the meds smell.  They pulled it all and, why it takes a year to get more out there is unknown to me.
> 
> I do agree that they could have notified Levoyxl customers in some way.  It's not as if they don't have all of our information.



May I ask what type of reaction you had?  I seem to be tolerating the Synthroid but am having the worst itchy skin!  It's the creases of my knees and elbows that itch.  Does that sound like a side effect anyone here has had?


----------



## SingingMom

Christine said:


> Yep, I am in FULL college mode.  This past Monday, I moved my DD back to WVU (she's a senior).  I hired some movers to help with getting the stuff out of the storage unit, into the truck, and into her house.   They didn't show up.
> 
> Fortunately, I brought my friend with me who can work like a man!!  She is going through a breast cancer scare now and so I think all the hard work took her mind off of it.  We got my DD moved but it was EXHAUSTING.
> 
> My son goes on Wednesday.  Should be much easier with all the volunteers.  Then he has 4 days of orientation.  My son said he'd like to be one of the orientation volunteers so maybe he will be doing the same as your son next year.
> 
> After that, I think all the quiet is going to unnerve me!



Our baby is starting junior year of college and heading to London next week to study for the whole semester!!  I don't know WHAT I am going to do with myself!! 
This getting old stuff is for the birds!!

"SingingMom" ....Sent from my iPad using DISBoards


----------



## luvmarypoppins

3prettyprincesses said:


> May I ask what type of reaction you had?  I seem to be tolerating the Synthroid but am having the worst itchy skin!  It's the creases of my knees and elbows that itch.  Does that sound like a side effect anyone here has had?



Well I had really itchy skin. First I had a sharp stabbing pain and then that was followed by the really itching skin.

Of course my pcp misdiagnosed me. Those symptoms were the sign of a severe B12 deficiency.

I am not saying that is what is wrong with you, but have you had blood tests to check those levels?


----------



## luvmarypoppins

Christine - can you believe my ds actually gets paid to be an orientation leader. It probably works out to min. wage with all he has done, but he also got a 2 day retreat out of it too. He said his room mates were horrible though. Really party people and he is not alike that at all.

singing mom - that is so exciting for you dd. Wow! Great experience! Off topic - do you know or have you ever checked into the Swan early around 11 am. if the room would be ready? We are going right to the parks anyway if the room is ready or not.  

micayla - thoughts and prayers for you as always. Hope you have a good week end.


----------



## SingingMom

luvmarypoppins said:


> singing mom - that is so exciting for you dd. Wow! Great experience! Off topic - do you know or have you ever checked into the Swan early around 11 am. if the room would be ready? We are going right to the parks anyway if the room is ready or not.
> 
> .



We always stay at the Dolphin. There have been a few times the room HAS been ready that early!  The other times, we leave our bags with the bell captain and go off to the play lol. Or we have a snack at the Cabana Bar and they call us when the room is ready.

"SingingMom" ....Sent from my iPad using DISBoards


----------



## Christine

3prettyprincesses said:


> May I ask what type of reaction you had?  I seem to be tolerating the Synthroid but am having the worst itchy skin!  It's the creases of my knees and elbows that itch.  Does that sound like a side effect anyone here has had?



Well, it was odd.  I took Synthroid all the time and never had any noticeable reaction, but when took my usual dosage of ibuprofen, I would get a single large wheal eithe on my chest or back.  It would start about 30 minutes after swalling the tablets and last for 2 hours.  After this happened several times, I assumed I was allergic to ibuprofen.  So I switched to Tylenol.  Same thing happened.  I still figured I was just now allergic to everything.  When I didn't take those medications, I was fine.  Then one day my doctor told me to get some OTC Feosol for my iron deficiency.  I took that and got a HUGE wheal/hive on my chest.  The biggest ever.  I then realized:  No, I cannot be allergic to all these things.  So I took every medication I had and set up a spreadsheet and listed all the ingredients.  I found the common ingredient was povidone.  However, what threw me was that my Synthroid had it as well as a brand of sudafed.  I went to my doctor with all this and he determined that I was probably allergic to the povidone in certain amounts.  The Feosol probably had a LOT of it and the Synthroid probably doesn't have much.

So he then switched me to Levoxyl.  What I did noticed was that the skin on my chest and neck kind of cleared up.  It was always "flushed" looking to the point people would comment on it and that went away.  So I guess the daily Synthroid did cause some issues but not enough to cause a hive.

I now take liquid ibuprofen if I need it because I cannot find one without povidone and I take regular strength Tylenol because it is made without povidone.  It's a real pain in the neck.  But, overall I did not have any itching unless I got the hive and that thing itched like crazy.


----------



## luvmarypoppins

ang - how are you feeling?

Micayla -  I am always praying for you. How are things?

Christine - I need to get back to reading

Well I havent heard from the internist yet. I might give it a week or two and leave a call at the endo nurse etc.

Completely OT - What is the best diversion from thy ca?  Why a disney trip of course!
Yup we are gong to our first food and wine. 2 of the ds are coming with us for the week end. We will be at the Swan and I know the concert that week end is Starship. They were playing by us over the summer but I didnt see them. That week end we are staying at the Swan. It will be our first food and wine. Not so uch the wine but the food. Just snacking around the world looks fun. I dont want to do any of the special stuff, we are alraedy paying an arm and leg for the ds airfare. At leat the hotels are free with dh ff miles. 

Also that week end my cousin and his family will be there on friday and then just sat. he will be there. The rest are flying back to NJ on sat. I have never met my cousins  grandkids or his son in law so that will be great if it works out. I have a strange family, not very close sadly.Then for 3 says dh and I are going to the Beach Club. It better be nice weather becaued I def. want to swim in Storm Along Bay. 

Oh and the best part of the trip. The day we come home, dh is leaving for calif that afternoon, so we have to unpack and repack a suitcase for him. oh fun!

Check in when you can.


----------



## mrsklamc

Thanks for checking in....Just got back from the OB actually. No sign of the cystic hygroma so that's good. Just praying the 'screening' is wrong....which they would say it's not wrong, because they gave us a 99% likelihood of him having DS and we were just in the 1%, but anyway...

Also, they did my glucose tolerance test early and it was not nearly as bad as people told me it would be.


----------



## Christine

mrsklamc said:


> Thanks for checking in....Just got back from the OB actually. No sign of the cystic hygroma so that's good. Just praying the 'screening' is wrong....which they would say it's not wrong, because they gave us a 99% likelihood of him having DS and we were just in the 1%, but anyway...
> 
> Also, they did my glucose tolerance test early and it was not nearly as bad as people told me it would be.



mrsklamc, will there be more tests regarding the DS?  I know when my test came back odd, I had further tests done to get a definitive answer.


----------



## mrsklamc

Christine said:


> mrsklamc, will there be more tests regarding the DS?  I know when my test came back odd, I had further tests done to get a definitive answer.



We will probably have an amnio, but further down the line when the risk is early labor rather than miscarriage. That would be considered diagnostic rather than a 'highly accurate screening.' In the meantime there will be a 'level 2' ultrasound and fetal EKG to check for problems.


----------



## angwill

luvmarypoppins said:


> ang - how are you feeling?
> 
> Micayla -  I am always praying for you. How are things?
> 
> Christine - I need to get back to reading
> 
> Well I havent heard from the internist yet. I might give it a week or two and leave a call at the endo nurse etc.
> 
> Completely OT - What is the best diversion from thy ca?  Why a disney trip of course!
> Yup we are gong to our first food and wine. 2 of the ds are coming with us for the week end. We will be at the Swan and I know the concert that week end is Starship. They were playing by us over the summer but I didnt see them. That week end we are staying at the Swan. It will be our first food and wine. Not so uch the wine but the food. Just snacking around the world looks fun. I dont want to do any of the special stuff, we are alraedy paying an arm and leg for the ds airfare. At leat the hotels are free with dh ff miles.
> 
> Also that week end my cousin and his family will be there on friday and then just sat. he will be there. The rest are flying back to NJ on sat. I have never met my cousins  grandkids or his son in law so that will be great if it works out. I have a strange family, not very close sadly.Then for 3 says dh and I are going to the Beach Club. It better be nice weather becaued I def. want to swim in Storm Along Bay.
> 
> Oh and the best part of the trip. The day we come home, dh is leaving for calif that afternoon, so we have to unpack and repack a suitcase for him. oh fun!
> 
> Check in when you can.



Sorry, I have been MIA.  To sum up how I am feeling 3 1/2 weeks without my thyroid meds it that I have been to the pits of hell and become a new breed of thyroid walking dead.  I can not stand it much longer but good news I got my whole body scan and the nuc med guy said he never saw so little tissue left after a surgery so I must have a great surgeon especially since I also found out I had severe Hashimoto's that nobody bothered to test me for over the last 20 years I had hypothyroidism.  Tuesday I get my RAI therapy dose and am isolated and on Friday I am free and start taking a high dose of levothyroxine.  Hopefully that will pop me back up to the energetic and brain awake person I was.  Oh and I did find out my cancer mass was bigger than the right thyroid but nobody felt it.  It was encapsulated and tall cell variant so it was an agressive cancer that looks like it did not spread. Yeah!!!

So over the last few weeks my son totalled his 13 day old first car and was lucky to live through it.  I have been driving him around as the driving dead.  Then DH started a new job and the first day driving in he blew out a tire and the second day blew out the transmission.  Being brain dead I don't even have the energy to care.    I will when I am thinking again and the bills start pouring in.

I see a lot of people have kids going off to college.  My son starts his first year at our community college on Monday.  Yeah   Oh and he found a replacement car yesterday, thank God.  I can not drive him while in isolation.

I hope your tests come back good.


----------



## angwill

mrsklamc said:


> We will probably have an amnio, but further down the line when the risk is early labor rather than miscarriage. That would be considered diagnostic rather than a 'highly accurate screening.' In the meantime there will be a 'level 2' ultrasound and fetal EKG to check for problems.



I am still praying and hoping things turn well for you.  Just hang in there and I know that is easier said than done.  

I did think of you when I read an article about how hypothyroid patients have a much higher chance of having a baby with Autism.  I know that is not what your dealing with but it was interesting to read about it.  It was on the thyca.org website.


----------



## luvmarypoppins

ang - sorry you are dealing with all these other problems on top of the hypo hell.
There is light at the end of the tunnel, so hang in there! Also soon enough you will be able to eat normal food.

Just keep drinking to flush the rai out of you. Lots of water!! I thought I was gonna float away!

Did they tell you what rai dosage you are going to get? I thought I read all aggressive variants need the 200 mci rai dose??

Well Jenn who used to post on here alot has tall cell variant. She got 200 and had the tear duct damage like me too. 

At least yours was encapsulated so that is good. 

Wishing you all the best.  Hang in there! My thoughts and prayers are with you.


----------



## angwill

luvmarypoppins said:


> ang - sorry you are dealing with all these other problems on top of the hypo hell.
> There is light at the end of the tunnel, so hang in there! Also soon enough you will be able to eat normal food.
> 
> Just keep drinking to flush the rai out of you. Lots of water!! I thought I was gonna float away!
> 
> Did they tell you what rai dosage you are going to get? I thought I read all aggressive variants need the 200 mci rai dose??
> 
> Well Jenn who used to post on here alot has tall cell variant. She got 200 and had the tear duct damage like me too.
> 
> At least yours was encapsulated so that is good.
> 
> Wishing you all the best.  Hang in there! My thoughts and prayers are with you.



Thanks, I got out of the LID diet because the doctors here do not believe it makes any difference at all.  They feel that the thyroid can only take in so much iodine and by going really hypo without meds it will be ripe to fill up and doing the diet is not going to help it fill up any fuller than it can.  I am so very thankful for that with all the stress and extra responsibilities on me it would have been near impossible for me to follow.  

I will get 100 mci because the cancer was encapsulated with no spread and the lack of left over thyroid tissue. They said I had the least amount of tissue they ever saw after surgery.  Because of the tall cell variant they said that will mean it will be followed up more often every 6 months for several years.  They explained that it spreads more like a breast cancer vs a slow growing thyroid cancer.  

I am praying I don't have any damage to tear or salavary glands.  I am just so thankful I did not go through the hard times with surgery and all that so many others such as yourself went through.  

Thanks for the prayers.  Ang


----------



## mrsklamc

I hate how they are 'practicing' medicine and don't really know...If the LID does not work then so many people have been through such unnecessary misery....

And just to prove I completely lost the genetic lottery, I have gestational diabetes...my sister has gotten it with her pregnancies but she is quite overweight and I am not so I thought I might get to miss that at least...no such luck.


----------



## angwill

mrsklamc said:


> I hate how they are 'practicing' medicine and don't really know...If the LID does not work then so many people have been through such unnecessary misery....
> 
> And just to prove I completely lost the genetic lottery, I have gestational diabetes...my sister has gotten it with her pregnancies but she is quite overweight and I am not so I thought I might get to miss that at least...no such luck.



Not enough is proven about the thyroid and the LID diet is still one of those controversial things.  From what I researched and watched in a video the head of the American Thyroid association said he knows it is still controversial and not all endocrinologists and other doctors follow it because there is no proof of it's effects but that he believes it is an important part of the therapy.  I questioned this with my endocrinologist, surgeon, and nuclear medicine doctor telling them what I saw and from who and their explaination of it was all the same belief that it can only hold so much iodine in there and depleating it with withdrawl and TSH levels getting high enough they feel that is all that is needed for the tissue and thyroid cancer cells to be hungry for the iodine and since the tissue and cells can only hold so much of it the diet does nothing.  It made enough sense to me not to do the LID diet just as a precaution that the hungrier the better and I am worried it will not take in enough without LID.  That does not mean that you or anyone else should listen to me and my doctors and it would be worth it for your peace of mind.  

My friend's neighbor talked to me about he RAI treatment and her doctor had her going overboard with safety compared to mine.  She was told plastic covering everything, wear gloves but make sure she did not touch the outside or touch herself with the gloves when on etc. Oh and even to keep her Air super cold so she sweat as little as possible. My nuclear med doctor said in his opinion that is way overboard but each of us has to do what we are comfortable with so that was ok what she did.  He simply told me that the standard procedures and said the radiation I will emit even in the first three days if I touch my phone or computer keyboard etc will be so minut if any after 3 days time that it is not worth it to cover those things as long as my husband and adult son do not touch them till after the three days.  He said he was part of a study they did with someone who got over 200mci (I cant remember the exact number) they put a tag that the people working in rad med use in hospital on the woman taking therapy along with their dogs, kids, and husband and followed with daily readings from the tags for two weeks and despite them being in the home with her after 10 days they had all had no exposure that detected on the tags without all the plastic coatings etc.  He said because of that he felt comfortable telling me covering the bed, pillows, electronics etc was not necessary but to do what I felt comfortable doing.  I will cover my pillows and bed in vinyl covers, launder things seperately in hot twice at least and clean all hard surfaces with lysol and a rag afterward.  That is what I am comfortable with.  

In other words do what you get advised to do and what you feel most comfortable and ok in your mind doing and that is what is most important.  

As for the gestational diabetes, weight does not always play a part in that. Genes, diet, and sometimes just luck of the draw are what happens.  I worked in OB years ago and saw twigs get it and obese women not and never really saw a corrolation with weight but that is just my observation.  Contrary to popular belief some obese women are healthier and get more exercise and healthy food than a lot of thin women.  The medical people know what to do and watch for.  I never saw complications other than bigger babies but that was just my personal observation as well.  Just listend to your doctor, watch your white starches, junk food, and if possible avoid all sugary drinks.


----------



## luvmarypoppins

ang - interesting how your drs. see things. Yes, I am sure every dr. has their own opinions on how do to things etc.

My rad. onc. now does thyrogen only. She says she is like the 8th largest user in the us? 

I wasnt hypo but I still had to cook all my food after being in the coma and then the bowel resection, ugh!

100 is not so bad. I would like to know what your one year scan follow up will be like with that dose. I am always curious with this stuff. 

Hmm, interesting about the tall cell acting like breast cancer remark. Can you enlighten me more on that.

I do know with mine they couldnt tell how my 2nd tumor got there but said it was a very aggressive formation etc. One pathologist thought it broke off and made its own tumor in a lymph node or took over a lymph and then started going through the accessory nerve or something like that. Also they are saying in some info that there may be a link between thy ca and then getting breast ca?? Hmm, I already had a tumor out but it was not cancerous.

Even if you didnt do the diet, just curious if you ate normal or did you try to cut back on the salt stuff???

Yes I am on the 6th month followup and testing regime. Its still 4 1/2 years. My endo never sad when she will switch to yearly.

Micayla - I am sorry you are now dealing with the diabetes. Do you have to be on a special diet or take meds? Dont know what is involved with that.

Yes, I can relate about the genetics stuff. I told you before my family has really bad genes. Especially heart and it seems connective tissue stuff. My ds has had to have surgery already and the surgeon said as usual, hmm,  have never seen anything like this in my surgical career. I took pictures of it etc. Yeah, been there, done that.

I think I am also the poster child of the surgical what could go wrong, does go wrong stuff too. And they always say, this is rare and we have never seen this happen etc.


----------



## angwill

luvmarypoppins said:


> ang - interesting how your drs. see things. Yes, I am sure every dr. has their own opinions on how do to things etc.
> 
> My rad. onc. now does thyrogen only. She says she is like the 8th largest user in the us?
> 
> I wasnt hypo but I still had to cook all my food after being in the coma and then the bowel resection, ugh!
> 
> 100 is not so bad. I would like to know what your one year scan follow up will be like with that dose. I am always curious with this stuff.
> 
> Hmm, interesting about the tall cell acting like breast cancer remark. Can you enlighten me more on that.
> 
> I do know with mine they couldnt tell how my 2nd tumor got there but said it was a very aggressive formation etc. One pathologist thought it broke off and made its own tumor in a lymph node or took over a lymph and then started going through the accessory nerve or something like that. Also they are saying in some info that there may be a link between thy ca and then getting breast ca?? Hmm, I already had a tumor out but it was not cancerous.
> 
> Even if you didnt do the diet, just curious if you ate normal or did you try to cut back on the salt stuff???
> 
> Yes I am on the 6th month followup and testing regime. Its still 4 1/2 years. My endo never sad when she will switch to yearly.
> 
> Micayla - I am sorry you are now dealing with the diabetes. Do you have to be on a special diet or take meds? Dont know what is involved with that.
> 
> Yes, I can relate about the genetics stuff. I told you before my family has really bad genes. Especially heart and it seems connective tissue stuff. My ds has had to have surgery already and the surgeon said as usual, hmm,  have never seen anything like this in my surgical career. I took pictures of it etc. Yeah, been there, done that.
> 
> I think I am also the poster child of the surgical what could go wrong, does go wrong stuff too. And they always say, this is rare and we have never seen this happen etc.



Yes, they are different and sadly don't use thyrogen at least not with therapy but maybe the scans later?  Didn't ask.  

You are a strong woman with all you went through and then also did the LID.  I have had days I would rather just stab myself than deal with anything. UGH!!

You know with the nuclear med guy saying I had less tissue than he had ever seen on a scan I am expecting a wonderful follow up next year with more of the same great news.  

I just asked for a reference so I could understand the difference of the tall cell variant vs the norm and he said it is not the slow growing non agressive typical variant that they are refering to when they say if you had to get one kind of cancer this would be it.  He said it is more like the faster growing more agressiveness of breast cancer as an example.  Does that make more sense?  So I guess it is not always the cancer that if you had to choose you would want to choose in all instances like tall cell.  That is why they watch it closer. 

So your saying you had a non cancerous tumor that was an agressive fast growing type?  Interesting.  I wonder if they only label cancer cells with variants like tall cells?  A tumor must have cells but if non cancerous maybe they don't have labels for the cells?  I suspect any tumor most likely can and will develop into cancer cells in time if not removed?

I read about the corrolation with thy ca and breast cancer and was told that after getting any type of cancer your chances of any other cancers developing are higher though.  I did have to wonder too if the reason there seems to be a higher rate of breast cancer after thy ca is because we are more aware and urged to keep up our mamograms and pap smears so we are also more likely to catch breast cancer than non thy ca patients?  

As for the diet.  Yes I did cut back on the salt.  I was not a salty person to begin with which may be why my numbers went so high so fast.  I did pick up the easier thy ca foods and have been eating them like the mazo crackers and non salted peanut butter, unsalted nuts, and shredded wheat, oh and unsalted bread that I have not used.  I am not a big bread eater.  I also got lots of fruits and salad and have been focusing on eating those when hungry.  I did not salt any foods but I would not anyway normally.  When out running around like I should not be doing but have to I did not worry when I had to stop and pick up something to eat but did think about what I was ordering.  I guess I would call it the casual LID. lol oh and I am not a big dairy person to begin with so I just avoided any of that easily too.

I am sad to hear about the genetics and your son.  That can not make you feel good being his mom.  When the doctor told me the thy ca and hashimoto's are hereditary so I should make sure my children are checked for it regularily I have never been so relieved that I could not have children and that I adopted instead.  Not that that doesn't come with it's own issues in not knowing what might haunt his birth families genes.  I am someone who finds blessings in even the little things that were devistating at one time in my life like infertility.  You know rereading this I really hope it didn't come across wrong.  I was just thinking about how I would feel and don't mean anything negative toward you or to make you feel bad in anyway and I apoligize if it did.  I would delete it but it is already out there.  If you rather I do let me know.


----------



## luvmarypoppins

No the breast tumor I had was not cancerous but it was the size of an egg. That is common in your 20's - fibroadenoma (? sp). Oh and in the rare and it could happen surgical thing with that. Post surgery the scar tissue wrapped around the nerve there and it feels like someone is punching me in the chest sometimes there. The radiologist said he only had 3 other cases like that, yeah right.

They told me the columnar cell I have is like tall cell. The cells are 3 times bigger then regular pap thy ca and they are stacked in a columnar pattern. I actually got to see a photo of my slides and the cells. It was awesome and scary at the same time. Thinking you are what was almost killing me etc. My endo asked if I wanted to see it and I said yes and my dh found it um, fascinating too. She was the one who told me she only had one other patient who had it.

Mine is usually in males over 60. I have seen a study lately on the internet that is pretty comprehensive statistically. 

My rad. onc. says she see 2 patients a year who have it and that is only because its the only place in our county where you can get the rai. So I guess my year I was one of the perhaps 2? Gotta love them odds!

So you are rare. I am assuming they will do the 6 month blood tests and ultrasounds?

I think one of the funniest things was when I had to go to the lab and get the post rai blood test. I told the guy - they told me to tell you I was hot, really hot. He said um ok. and I told him etc.


----------



## mrsklamc

angwill said:


> As for the gestational diabetes, weight does not always play a part in that. Genes, diet, and sometimes just luck of the draw are what happens.  I worked in OB years ago and saw twigs get it and obese women not and never really saw a corrolation with weight but that is just my observation.  Contrary to popular belief some obese women are healthier and get more exercise and healthy food than a lot of thin women.  The medical people know what to do and watch for.  I never saw complications other than bigger babies but that was just my personal observation as well.  Just listend to your doctor, watch your white starches, junk food, and if possible avoid all sugary drinks.



Thanks...This morning I read an article about "Thin Outside, Fat Inside" and how that's kinda the body type that gets gestational diabetes despite not being overweight- and it fit me pretty well; I rely on counting calories vs exercise, because I hate it, have several family members with diabetes, which I do...and a sweet tooth. I quit drinking sweet drinks about 2 years ago. I need to go meet with a nutritionist and she will tell me how to eat. I got the message this morning (my dr must have been working overnight) so in the meantime we are taking walks after meals, since the internet seems to think that helps.


----------



## angwill

mrsklamc said:


> Thanks...This morning I read an article about "Thin Outside, Fat Inside" and how that's kinda the body type that gets gestational diabetes despite not being overweight- and it fit me pretty well; I rely on counting calories vs exercise, because I hate it, have several family members with diabetes, which I do...and a sweet tooth. I quit drinking sweet drinks about 2 years ago. I need to go meet with a nutritionist and she will tell me how to eat. I got the message this morning (my dr must have been working overnight) so in the meantime we are taking walks after meals, since the internet seems to think that helps.



Good for you being proactive that is really best.  Yes just taking walks helps getting your heart pumping and blood flowing and it will help your body better process what you eat.  That in turn helps the organs that process the sugars and such.  The nutritionalist can be your best friend.  I exercise 5 days a week and started on that path at least 10 years ago and a friend promised me I would grow to love it and look forward to it.  I am still waiting for that to happen.   I am a stationary bike kid of gal with some small weight work outs.  I quit drinking the sweet drinks in my early 20's.  I am obese and healthier than most of my friends that are not.   My doctor swore I had to have high cholesterol and diabetes and she was wrong on both accounts.  Very low cholesterol levels run in my family so that blew her away and so far I have kept the diabetes away though that does run in my family so will get me one day.

I have also worked with children with special needs and my favorite of them all is the DS kids.  Yes, they can be a handful especially on a hectic day but the majority are the absolute most loving, open minded, see all the beauty we all miss kind of people.  They teach us every single day how to find pleasure and love in the little things and blow off the garbage that is not worth acknowledging.  They are a blessing in disquise IMO.  That said I have never had to take care of someone with it 24/7.


----------



## luvmarypoppins

ang - wishing you all the best tomm. 

Micayla - hope the walking will help you.


----------



## angwill

luvmarypoppins said:


> ang - wishing you all the best tomm.
> 
> Micayla - hope the walking will help you.



Drove to RAI therapy and got my pregnancy test and then pill and leave to drive back home.  It was uneventful but now my stomach is all upset and I am praying I hold it in.  Has anyone else felt sick to their stomach after taking the radiation pill?  Matzo Crackers and mini wheats have been my friends today.


----------



## wordwitt

Hi, I know I posted on this thread a while back, but then got caught up in other things.  I am a thyca survivor, also.  Diagnosed 3 years ago.  Total thyroidectomy with partial dissection.  I had three positive lymphs, and one of them was poking through the lymph node.  I had a good number of tall cells, but not enough to make it a "variant."  But I am watched closely.  I get my care at University of Colorado.  My Tg ranges from .01 to undetectable, but I have a small number of antibodies that seem to be dropping.  Hard to tell because they keep changing the assay.  My scans so far are clean.  I only had 49 mc of radioactive iodine.  It was a gamble.  My doc also keeps my tsh at .4, so again, a gamble.  I have a hard time tolerating it any lower.  I was 44 at diagnosis and just turned 47.


----------



## luvmarypoppins

angwill said:


> Drove to RAI therapy and got my pregnancy test and then pill and leave to drive back home.  It was uneventful but now my stomach is all upset and I am praying I hold it in.  Has anyone else felt sick to their stomach after taking the radiation pill?  Matzo Crackers and mini wheats have been my friends today.



I felt sick just about the whole week. My rad. onc. gave me an anti emetic pill because she said its her standard procedure before the rai since  once a patient immediately threw up the pill right in front of her, gheesh! 

Yes I think Christine says its radiation gastritis. I felt as soon as I ate something I had to run to the bathroom like 30 minutes after I ate and it didnt matter what I ate I felt pretty miserable. (colon issues sorry not stomach) Like everything was going through my system in such a short amount of time. But at least I did not lose my taste or smell like some on here have. But that does not last forever. Keep drinking! 

Since its 24 hours past the rai why dont you have some soup or jello or gingerale etc? Even tea if you want something non carbonated.

They told me most of the radiation concentrates in your neck and stomach areas? That was from some radiation guy coming at me with the geiger counter in the hospital.

My dh kept scientifically figuring out all week how radioactive I was in half lifes! Gotta love him!

Hang in there. And this too shall pass!


----------



## angwill

wordwitt said:


> Hi, I know I posted on this thread a while back, but then got caught up in other things.  I am a thyca survivor, also.  Diagnosed 3 years ago.  Total thyroidectomy with partial dissection.  I had three positive lymphs, and one of them was poking through the lymph node.  I had a good number of tall cells, but not enough to make it a "variant."  But I am watched closely.  I get my care at University of Colorado.  My Tg ranges from .01 to undetectable, but I have a small number of antibodies that seem to be dropping.  Hard to tell because they keep changing the assay.  My scans so far are clean.  I only had 49 mc of radioactive iodine.  It was a gamble.  My doc also keeps my tsh at .4, so again, a gamble.  I have a hard time tolerating it any lower.  I was 44 at diagnosis and just turned 47.



Hi and WB.  What does partial dissection mean?  I have tall cell variant as diagnosed after TT.  I have no idea what my TG will be or what TSH levels we will go with since I am still anxiously awaiting being able to take my levothyroxine again on Saturday.  By antibodies I take it you mean hashimoto's antibodies?  I thought those stop after a while?  My doctors said they rarely give under 100 mci for therapy. I am 44 now and was diagnosed with thyroid cancer in July. 

Can I ask what scans and tests you get now and how often?

Ang


----------



## Christine

angwill said:


> Hi and WB.  What does partial dissection mean?  I have tall cell variant as diagnosed after TT.  I have no idea what my TG will be or what TSH levels we will go with since I am still anxiously awaiting being able to take my levothyroxine again on Saturday.  By antibodies I take it you mean hashimoto's antibodies?  I thought those stop after a while?  My doctors said they rarely give under 100 mci for therapy. I am 44 now and was diagnosed with thyroid cancer in July.
> 
> Can I ask what scans and tests you get now and how often?
> 
> Ang



Partial dissection refers to a neck dissection where they go into the neck and remove lymph nodes.  Partial is less than a full so the remove less nodes in a partial.

The antibiodies she refers to are anti-thyroglobulin (TG) antibodies. Some people have them, some people don't.  As long as you demonstrate antibodies, your TG test is not considered reliable.  The antibodies will "fight" the TG so if you have a low or nonexistant TG reading, the antibodies may be causing that so you can't really get the "all clear" as long as you have them.

As for the nausea, I had it both times with my 150 mci doses.  The nuclear physician told me that the RAI causes gastritis.  My nausea lasted a good while.  My doctor prescribed Pepcid AC in the morning and evening and Gaviscon liquid throughout the day.  I do think it helped quell the nausea faster than when I didn't use those meds.


----------



## mrsklamc

I was only nauseous after my second (higher) dose. A friend went to whole foods and bought a chicken to make me chicken soup with, and that was about all I ate for a week.


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## 1Grumpy9

I haven't checked in here in a while.  I have finally found a med that is working the way it is supposed to.  It is Tirosint and after some juggling, I am at a level that keeps my numbers where my Endo likes to see them.  She did up my calcium pill that I take for my hypocalcemia.  The problem is that my pharmacy couldn't get the script filled and I had to go to another pharmacy that my insurance will allow me to go to.  The other problem is that I can only get a one month supply for the pill instead of a 3 month supply like at the other pharmacy.


----------



## Christine

I tried Tirosint back in the June/July timeframe. 

For some reason, I was miserable.  I was going through a very stressful time at work so I have no idea of the real cause.  It's a shame there was such poor timing involved there.

I had terrible anxiety, panic attacks, horrible intestinal issues.  This went on for 6 weeks.  It finally calmed down when I found some old Levoxyl and some generic Sandoz levothyroxine.

I've thought about giving Tirosint another try but I'm not quite ready yet to put myself through that if it WAS the medication.


----------



## 1Grumpy9

I was on Synthroid since age 7, and after my surgery, I was almost maxed out on the amount that the Endo wanted to give me (600mcg a day).  My numbers were still too low for her liking, so she tried Tirosint on me because it is made for those with absorption problems (which I have with all the calcium I take).  I am now on 200mcg of Tirosint and it works soo much better for me.  I am glad my Endo heard about Tirosint when she did or I don't know what I would be like without it.  I am also glad that my perscription plan covers Tirosint (they didn't cover Synthroid).

It could have been a combination of everything going on and a change of meds to your system that made you feel like that.


----------



## Christine

1Grumpy9 said:


> I was on Synthroid since age 7, and after my surgery, I was almost maxed out on the amount that the Endo wanted to give me (600mcg a day).  My numbers were still too low for her liking, so she tried Tirosint on me because it is made for those with absorption problems (which I have with all the calcium I take).  I am now on 200mcg of Tirosint and it works soo much better for me.  I am glad my Endo heard about Tirosint when she did or I don't know what I would be like without it.  I am also glad that my perscription plan covers Tirosint (they didn't cover Synthroid).
> 
> It could have been a combination of everything going on and a change of meds to your system that made you feel like that.



WOW, 600 mcg!!!  I have heard mostly good things about Tirosint and I am a *sensitive* person so I thought it would be a great choice for me.  I felt so awful.  I heard that you should start at a lower dose than usual because, since it has not fillers, it is much better absorbed and you get more medication in your system.  So that could have been one issue.  However, I had a really, really, really stressful job situation going on (worst of my life) that started right when the Levoxyl got recalled. Honestly, it could have been that rather than the Tirosint.

My insurance does cover Tirosint, but I pay $70 for a 3-month supply versus $20 for a 3-month supply of Levoxyl.  Synthroid runs me $35 for a 3 month supply.


----------



## angwill

Christine, thanks for the explainations and suggestions.  

My endo just told me to take over the counter calcium and vitamin D that I am low on.  Does anyone have any suggestions of a good OTC stuff?  I know they calcium citrate is best but any other suggestions?


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## luvmarypoppins

ang - my endo told me just to take a couple of tums a day for the calcium.

My vitamin d must be really low because I have to take a prescription supplement once a week its 50,000 iu and you cant get that high a dose over the counter. Of course my ins. does not pay for it but its not too expensive.

How are your nausea issues? I agree with Micayla. the 200 mci really throws you for a loop!

Maybe try smaller meals more frequently and experiment with things to see what you can tolerate. Do you have any taste issues?


----------



## angwill

luvmarypoppins said:


> ang - my endo told me just to take a couple of tums a day for the calcium.
> 
> My vitamin d must be really low because I have to take a prescription supplement once a week its 50,000 iu and you cant get that high a dose over the counter. Of course my ins. does not pay for it but its not too expensive.
> 
> How are your nausea issues? I agree with Micayla. the 200 mci really throws you for a loop!
> 
> Maybe try smaller meals more frequently and experiment with things to see what you can tolerate. Do you have any taste issues?



Tums is a good idea I will take those and see if that level goes up because of it.  My D was pretty low they noticed because they took on parathyroid and it was really swolllen from the lack of D.  

The nausea is better this morning.  The first night and first two mornings or when I layed down it was pretty bad.  I was just eating the crackers, drinking water, and sucking on sugar free lemon drops till the afternoon when it would feel a bit better.  

No taste issues so far.  We shall see.  I did get 100 mci not 200 thank God.  

Thanks for the advice.  I appreciate any I get.

Ang


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## luvmarypoppins

Well its September and we all know what that means... Oh yeah, Its Thyroid Cancer Awareness Month!!

One of the authors I follow just posted something on her facebook page since she is a thy ca survivor. 

Very sad..one of the ladies on the breast cancer boards passed away. She had bladder cancer. I met her with another lady 2 years ago at Epcot. She was there when we were both there in May again but I kept texting and she said the chemo was making her too tired etc. so we didnt get a chance to meet up. Very nice gal.

ang - how are you feeling? 

Micayla - I laughed because my ds asked me, what is a husker? I think its something they saw on tv. I said - your cousins are Huskers. They live in Neb. etc. He just said, oh.

Well I went over our trip plans with youngest ds He said, there is just one problem. I said what? He said I have to eat a Mickey waffle! Yeah, you can tell all my ds grew up Disney! So I told him we will go to the Garden Grove buffet since its right in the hotel. I know they have Mickey waffles there etc.

Also youngest ds starts his clinical rotation at the hosp. this week. I wish he would get a thy ca patient. That would be awesome! He cant pick or choose, he just get assigned ones. Hmm, maybe he could ask his instructor? I dont know what the rules are.


----------



## luvmarypoppins

ang - you survived the week! How are you feeling?

Micayla - how are things going?

Christine - is your ds getting adjusted to college life?

Well next week I am going to the internist that my endo picked out for me. So we shall see how that goes. I am sure it will be an experience. I think these drs. kind of shake their heads after I leave and say, what have I gotten myself into with this one After I made the appt. i realized that is the day I usually have my school meeting. Oh well.


----------



## DMLAINI

My husband was just diagnosed with thyroid cancer.  He's having his thyroid removed at the end of the month.  Any advice for us?  Also, is it typical to get the RAI after having your thyroid removed?  Thank You!


----------



## 1Grumpy9

ang...I have to agree with luvmarypoppins...My endo told me when I felt my calcium go low, chew tums.  She also put me on a Calcium emulsion (it has the consistancy of milk of magnesia).  That isn't a script per say, but my pharmacy does keep it back behind the counter.  I also take a script for calcium called Rocaltrol (generic is Calcitriol) and that I take every day.

When I got out of the hospital with my surgery, I was on 20 tums a day along with 4 caltrate pills.  That was really hard to swallow after just having major throat surgery.  I also try to have as much calcium based foods as possible.  I know it isn't the best for me (like ice cream), but I know I am getting some calcium and vitamin D out of it.

luvmarypoppins...good luck with the new endo.  I hope it works out for you.  I know changing endo's can be scary esp. if you liked your last one.


----------



## SingingMom

Just came back from my yearly endo appointment. Gained a few pounds (blaming it on perimenopause, not the apple strudel we had on our Germany Adventures by Disney tour!) but everything looks good.  Follow up ultrasound before my next appointment next September.

21 years cancer-free!!  Hang in there, friends!  

"SingingMom" ....Sent from my iPad using DISBoards


----------



## luvmarypoppins

DMLAINI said:


> My husband was just diagnosed with thyroid cancer.  He's having his thyroid removed at the end of the month.  Any advice for us?  Also, is it typical to get the RAI after having your thyroid removed?  Thank You!



sorry to hear that, but glad you found us. I know the difference in metabolism will mean different med. doses than what we mention here.

Guess he had a fna and did they say what kind they think he has?

I know there are a few men on the thyca.org website. That might be a good place for him to go and share with them, just saying that from what I read there they seem to have issues with med dosages and finding the correct levels etc. I dont post there but just read along. My favorite guy there is cflo. I think that is his user name. He has had a recurrence bu the is some fighter! 

My advice, make sure he has a good surgeon.
 Dont rush stuff post op. Get things that are easy to swallow at first like pudding, yogurt, mashed potatoes etc. 

I guess then after the surgery you just play a waiting game until you get the path report. Then you will see what the plan is etc.

Make sure you have a good endo too. You will be seeing him/her a lot so its good to find someone you are on the same page with. 

Also dont push the voice after surgery. Your dh will need time to heal. 

I can see you are being supportive already! 

Wishing your dh all the best.


----------



## luvmarypoppins

1Grumpy9 - I am glad the new med is working. Like you I can only get a 30 day supply of meds unless I do mail order and I dont want to do that as it has to be generic I think. I know I would save money but I feel like it will hurt the local economy here, one being my neighbor who is a pharm tech etc. Maybe in the future if I really need to save money I will do it

SingingMOm - congrats on the great report! Like Christine, glad to hear of the long term survivors here! Wow, your Adventure by Disney sounds Amazing. Can you share a little? I have been on the cruise and was not that wowed. It sounds interesting! I would need something not too much walking etc Doubt that is what they would call an adventure!


----------



## luvmarypoppins

1Grumpy9 - I forgot to say, I am not getting a new endo. I am getting a new internist instead of my gp who I cant stand and never go to. He totally misdiagnosed my cancer.

  I love my endo. I dont know what I would do without her. She is pretty new so I think she will stay for a while and I saw they just got a new endo. A female. I think because I saw there are just so many people around here being dx with thy ca.


----------



## SingingMom

luvmarypoppins said:


> SingingMOm - congrats on the great report! Like Christine, glad to hear of the long term survivors here! Wow, your Adventure by Disney sounds Amazing. Can you share a little? I have been on the cruise and was not that wowed. It sounds interesting! I would need something not too much walking etc Doubt that is what they would call an adventure!



This was our second ABD!  We'll never travel to Europe without them!!  (Except next month, when I fly solo to visit DD20 during her semester in London!)

Germany was gorgeous!  Never imagined how beautiful. Can't find words to describe the mountains and adorable cities!  LOTS of walking, but the guides take care of EVERYTHING!  You "show up"!  The extra perks of special tickets, personal tours, hidden gems, no lines at many high profile sites, fabulous dinners.  We had such fun!!

Last year was London/Paris with ABD, and that was equally wonderful. If you ever have the opportunity for an Adventures by Disney tour, we highly recommend it!!  

"SingingMom" ....Sent from my iPad using DISBoards


----------



## Christine

SingingMom--Have you done tours to Europe without using ABD?  I'm just wondering how they compare.  I'm trying to encourage my parents to go on a trip to Europe and was wondering how ABD compares to any other tour you may have been on.


----------



## SingingMom

Christine said:


> SingingMom--Have you done tours to Europe without using ABD?  I'm just wondering how they compare.  I'm trying to encourage my parents to go on a trip to Europe and was wondering how ABD compares to any other tour you may have been on.



No, we have only traveled to Europe twice, both with ABD. I truthfully never had a desire to, but DD has the travel gene!  It was a belated HS graduation gift and ended up being the trip of a lifetime. Definitely a good introduction to international travel!  Disney takes care of everything and then some!  We felt it was worth the cost. We met wonderful people we still keep in touch with and adored our guides!  Any specific questions, just ask!  

"SingingMom" ....Sent from my iPad using DISBoards


----------



## mrsklamc

DMLAINI said:


> My husband was just diagnosed with thyroid cancer.  He's having his thyroid removed at the end of the month.  Any advice for us?  Also, is it typical to get the RAI after having your thyroid removed?  Thank You!



Yes, RAI is pretty standard. Make sure he has a very experienced surgeon, it's a lifelong pain in the rear if parathyroids get damaged. If he has to go on the low iodine diet, we can offer more advice. Sorry you're going through this.


----------



## DMLAINI

luvmarypoppins said:


> sorry to hear that, but glad you found us. I know the difference in metabolism will mean different med. doses than what we mention here.
> 
> Guess he had a fna and did they say what kind they think he has?
> 
> I know there are a few men on the thyca.org website. That might be a good place for him to go and share with them, just saying that from what I read there they seem to have issues with med dosages and finding the correct levels etc. I dont post there but just read along. My favorite guy there is cflo. I think that is his user name. He has had a recurrence bu the is some fighter!
> 
> My advice, make sure he has a good surgeon.
> Dont rush stuff post op. Get things that are easy to swallow at first like pudding, yogurt, mashed potatoes etc.
> 
> I guess then after the surgery you just play a waiting game until you get the path report. Then you will see what the plan is etc.
> 
> Make sure you have a good endo too. You will be seeing him/her a lot so its good to find someone you are on the same page with.
> 
> Also dont push the voice after surgery. Your dh will need time to heal.
> 
> I can see you are being supportive already!
> 
> Wishing your dh all the best.





What does fna mean? I know the nodule is less than 1 cm & right in the middle of his thyroid.  It also has calcification.


----------



## SingingMom

DMLAINI said:


> What does fna mean? I know the nodule is less than 1 cm & right in the middle of his thyroid.  It also has calcification.



Fine needle aspiration?

"SingingMom" ....Sent from my iPad using DISBoards


----------



## mrsklamc

luvmarypoppins said:


> Micayla - how are things going?



Well, since we aren't dealing with enough  DH's mom has breast cancer. It's a kind that should be very treatable, but it's frustrating. It's the busiest time of year for DH's work and I don't know if I am allowed around her if she needs radiation/chemo, etc.


----------



## luvmarypoppins

Micayla - so sorry to hear about your mil. You and your dh have too much on your plate right now for sure. Wishing her all the best. Sending prayers. When is her surgery?

Well I am back from the new internist today and guess what...I gained more weight!!! 

Christine ...since the tsh went up, do you think I should ask the endo again about the weight. This is the 3rd doctor and 3rd time its gone up since June I think. Very frustrating to me.

I wasnt to impressed with this dr. personality for sure. Neither was my dh. But she has great credentials, John Hopkins, Columbia etc. She just was all business like, not very compassionate. 

I had an ekg, lung test, pulse etc. She says she doesnt see anything sticking out at her, but I have a "complicated history".  Yeah, like I dont know that!

So I went out of there with her saying: I have a lot of homework for you and lets call this the 100Kmile check up

She wants me to have:

blood work
x ray of the R hip, R knee and chest
holter monitor
sleep study
echocardiogram
thallium stress test

Oh and she didnt even mention a flu shot! 

My head is spinning right now. I know some things I have to see about my ins. because they are mentioning one place to go and I dont think my ins. covers some of those places etc. So it will be a process. I am not looking forward to all of this at all.

Oh Christine. Thought of you because my dh has to go to the Dept. of (sorry I never say that on a public forum). He has to give a little speech/presentation. He said he has never been to this one particular place before so it should be interesting. He is going with other people. He is just part of an entire presentation. I think that is mid oct. 

Well everybody check in when you can.


----------



## mrsklamc

Gosh that's a lot of tests! I have no idea what some of them are. 

DMIL's surgery is Friday, and we've decided to go since DFIL is not so great with medical stuff. So I have an ultrasound first thing tomorrow, then driving all day, the surgery is Friday, we'll stay Saturday and drive back Sunday.


----------



## Christine

> Christine ...since the tsh went up, do you think I should ask the endo again about the weight. This is the 3rd doctor and 3rd time its gone up since June I think. Very frustrating to me.



As you know, everyone is different, however, your TSH (even elevated) isn't in the range to set off any alarms that it would cause weight gain.  However, it *is* a change and your metabolism does slow down when your thyroid hormone is reduced, so it could cause something slight in the gaining area.  Alternatively, my endo says that a lot of his 'hyper' patients gain weight because they are so hungry all the time yet they don't quite burn it all off.



> I wasnt to impressed with this dr. personality for sure. Neither was my dh. But she has great credentials, John Hopkins, Columbia etc. She just was all business like, not very compassionate.



Sounds very typical of most doctors these days...sigh...



> blood work
> x ray of the R hip, R knee and chest
> holter monitor
> sleep study
> echocardiogram
> thallium stress test



Looks like QUITE the cardiac work up.  The Thallium stress test is the one where you don't actually have to run on the treadmill, correct?  It simulates that for you?

The echo and holter are all easy enough.  Are they looking for cardiac issues?  Guess the sleep study goes along with that in order to rule out apnea.  A friend of mine is going through all of these tests because he's having unexplained shortness of breath, fluid retention, and a host of other symptoms and they can figure it out.  I know he just had to do the sleep study too.




> Oh Christine. Thought of you because my dh has to go to the Dept. of (sorry I never say that on a public forum). He has to give a little speech/presentation. He said he has never been to this one particular place before so it should be interesting. He is going with other people. He is just part of an entire presentation. I think that is mid oct.



Well, I wonder if he will be in my neck of the woods!!


----------



## luvmarypoppins

Christine - I posted on the other thread. I am so happy to hear you are safe but so sad about those who were lost in this senseless act. I am sure you are an emotional wreck. I hope you can rest and recover emotionally. I am sure you are drained. Thinking of you.

Micayla - how did the ultrasound go? Hope things are going well. How was your mil surgery? I am sure that is hard on your mil. The breast cancer girls on the comm. board thread are really encouraging. They are a wealth of information and I always admire their strength and courage. Sending prayers.

I am going to try and get my blood tests on Friday. I know they wont be thyroid stuff, lol.


----------



## mrsklamc

Thinking of you as well, Christine!

Angwill, how is it going?

LMP- The US actually had to be rescheduled, they wanted to do it at 2:15 PM and we needed to be well on our way by then, so it's a week from tomorrow now. 

The surgery was uneventful, and relatively minor as BC surgery goes. We are awaiting the result of the testing to see whether she needs chemo or just the radiation.


----------



## angwill

mrsklamc said:


> Thinking of you as well, Christine!
> 
> Angwill, how is it going?
> 
> LMP- The US actually had to be rescheduled, they wanted to do it at 2:15 PM and we needed to be well on our way by then, so it's a week from tomorrow now.
> 
> The surgery was uneventful, and relatively minor as BC surgery goes. We are awaiting the result of the testing to see whether she needs chemo or just the radiation.



I am fine thanks for asking.  Still having a bit of intestinal issues at 3 weeks post RAI. I am just so happy all the worst is over with now.  I am thrilled to be able to have some of my energy and mind back.  I really didn't think I would make it much longer being low thryroid really is like being in hell.  

I am so sorry to hear about your MIL.  During all my thyroid stuff it really seemed to pour for me too with one big issue happening after another.  It can seem so overwhelming.  I do hope the best for your MIL and am glad to hear her sugrery went well and I am praying that the treatment be as simple as possible and results be the best possible.

DMLani, 

So sorry to hear about your DH.  I was where he is at the beginning of July having TT on July 30th.  My mass was bigger than the one side of my thyroid but all encapsulated and didn't spread thank God.  Getting that sucker out of there will be a relief for him.  I worried so much about the sugery and in reality that was the easiest and most relieving part when it was over for me.  

1Grumpy9,

Having to switch meds and having been on such a high dose has to be extremely frustrating.  I am so glad they found a solution for you in the new med.  Thankfully I had hypothyroidism for almost 20 years before my TT and RAI so I am expecting it to work again for me.  I was always on a higher dose though but only 250 mcg and right now the endo put me on 300 mcg after RAI.  Thanks for sharing that just incase anyone else has those issues.

LMP,

Having worked around doctors I can tell you sometimes the ones who are all business are the best.  Stick with her and hopefully you will grow to appreciate her.  Not everyone wants a friendly doctor either and a lot of times they get that all business approach to avoid getting attached to patients.  It is actually suggested not to be personal with patients so you avoid the emotional connection.  I will admit though that I do not like a doctor who is impersonal and all business sending me for test after test without explaination to why.  What bugs me more is those same doctors who do not tell you options and pros and cons of those tests.

Ang


----------



## luvmarypoppins

ang - sorry you are still dealing with the intestinal stuff. I cant remember how long my issues lasted.

Are you on 300 mcg of synthroid? Post op my endo put me on 200 mcg and my family thought I was off the wall. Even at 175 it was bad but I felt better. Now I am at 150 and its ok. I couldnt stand all the heart palps at 200 etc. But she said there was no way she was lowering it with my aggressive variant for a long time etc. 

Well Friday I am starting the testing. I booked the blood and urine tests. She did tell me what she is looking for. I have a very bad family history of heart stuff since my parents and my sister are all deceased from heart related things at a very young age etc. 

Well a week from this Friday I am going to be walking around Epcot at the Food and Wine with my dh and the 2 ds, so its all good


----------



## angwill

luvmarypoppins said:


> ang - sorry you are still dealing with the intestinal stuff. I cant remember how long my issues lasted.
> 
> Are you on 300 mcg of synthroid? Post op my endo put me on 200 mcg and my family thought I was off the wall. Even at 175 it was bad but I felt better. Now I am at 150 and its ok. I couldnt stand all the heart palps at 200 etc. But she said there was no way she was lowering it with my aggressive variant for a long time etc.
> 
> Well Friday I am starting the testing. I booked the blood and urine tests. She did tell me what she is looking for. I have a very bad family history of heart stuff since my parents and my sister are all deceased from heart related things at a very young age etc.
> 
> Well a week from this Friday I am going to be walking around Epcot at the Food and Wine with my dh and the 2 ds, so its all good



I am hoping the intestinal stuff goes away soon.  I had awful itching for a while there too it was to the point I was breaking out in hives and scratching till I was bleeding.  I don't know if it was the RAI in my sweat, hives from the bad anxiety I had during hypo hell, or if it was taking enough calcium and vitamin D.  It is gone now though, thank God.  Benedryl and Zyrtec did help while it was going on if I remembered to take it.  Hypobrain was not good to me either. lol  

I was on 250 mcg of levothyroxine before TT for my hypothyroidism and my tsh was within range. I felt low and far from hyper then.  I am on 300mcg now post TT.  I am pretty sure I will not go hyer on 300mcg.  I have read the body always needs a higher dose after TT than before for people with hypothyroidism.  Everyone is different too and I don't think I am very sensetive to the meds like some are.  I was on the end of hyperthyroid at one point in my hypothyroid journey and didn't feel heart palpitations but really enjoyed the extra energy I had.  I miss it. lol  I am tall cell variant, the agressive cancer, as well.  I was lucky mine did not go outside the tumor walls.  Anyway, I did talk to my Endo's nurse and questioned being on a higher dose of levothyroxine than before and she explained there is some calculations the endo uses to decided what dose to put someone on.  I just said well he is the expert so I will trust him and if I go a bit hyper I will most likely enjoy an energy spurt anyway. lol  

Well good luck on Friday and I hope all goes well for you with the testing and hopefully you beat the odds on the heart issues and all comes back good.  Enjoy Epcot and eating your way around the world.  That sounds like a very welcome break from reality.


----------



## mrsklamc

Margins were clear and so were the lymph nodes, so just radiation! Thanks for your support ladies!


----------



## angwill

mrsklamc said:


> Margins were clear and so were the lymph nodes, so just radiation! Thanks for your support ladies!



That is wonderful news for your MIL. Yeah!!! Can you be with her for the radiation?


----------



## DMLAINI

My husband had his thyroid removed yesterday & it doing well today (other than a sore throat & raspy voice)...just waiting for the pathology report.  If he'd need RAI, how long would he have to be away from people?  Just wondering because he's now out of sick time.


----------



## luvmarypoppins

mrsklamc said:


> Margins were clear and so were the lymph nodes, so just radiation! Thanks for your support ladies!



Great News!! I know the gals on the breast cancer thread says that the radiation makes you tired after a cumulative time. I know they say there is a cream you can get if it starts to burn your skin etc. If you have any other questions you can ask them, They are great gals.


----------



## luvmarypoppins

DMLAINI said:


> My husband had his thyroid removed yesterday & it doing well today (other than a sore throat & raspy voice)...just waiting for the pathology report.  If he'd need RAI, how long would he have to be away from people?  Just wondering because he's now out of sick time.



Glad to hear he is doing well. Did he have any lymph nodes removed, or just the thyroid? The voice def. takes a while to come back. Dont push it. 

I had a lot of surgical trauma so my voice was really bad. I just found it better to text and write stuff on paper for a while. I hear others say just use your regular voice but no shouting etc. They actually gave me a pad and paper to write with for a while. Then some nurse kept saying, use your voice etc. 

It seems everyone has different radiation precautions. Mine were super strict.
I think generally its a week. Maybe if he got it done on a friday then he would have the week end for 2 days of not working, so that might help a little etc. 

My dh always figures the radiation out scientifically in half lifes. Not medically. But he says its a week etc. 

I am sure next week cant come fast enough to get the path report. Hang in there and just support your dh as much as you can.

If he has swallowing issues maybe try soft stuff like yogurt, meatloaf, mashed potatoes etc. 

Wishing him all the best.


----------



## angwill

DMLAINI said:


> My husband had his thyroid removed yesterday & it doing well today (other than a sore throat & raspy voice)...just waiting for the pathology report.  If he'd need RAI, how long would he have to be away from people?  Just wondering because he's now out of sick time.



Good to hear your husband is doing well.  I was so lucky that I did not have a sore throat but I was told not to talk or as little as possible for a day or two.  I didn't listen however.  Too many nurses coming and going and my husband and son were there with me.  Maybe if my throat hurt I would have shut up more but I was sooooo bored in the hospital overnight.  

With RAI my nuclear med guy (they are all different) said it would depend on the job and if he is around children or pregnant women how long you would need to stay off the job.  If not around either my nuc med dr said back to work after 3 days home after radiation.  So if he can get it on a Friday he could go back Tuesday.  I don't know what it would have been around children or pregnant women though since it didn't effect me.  Your nuclear med guy or state could have a totally different set of rules though.  He could call the hospital and ask for someone in nuclear medicine and ask them if he needs to know now.  

Oh and before taking the therapy RAI he will need two days for whole body scans.  He will go in one day and take a low dose RAI pill and then wait about 4 hours to get the first scan, the next day he gets the second scan.  Scans take 1 hour each for me.  That is when they know what dose of therapy RAI to order and when to schedule the therapy dose.  Then a week after the therapy dose of RAI he will go in for another WBS so they can see what tissue the RAI settled into.  Then he is done for about 6-8 weeks to get a blood test to see how his TSH levels are doing.  At least this is how it is going for me.


----------



## SingingMom

angwill said:


> Good to hear your husband is doing well.  I was so lucky that I did not have a sore throat but I was told not to talk or as little as possible for a day or two.  I didn't listen however.  Too many nurses coming and going and my husband and son were there with me.  Maybe if my throat hurt I would have shut up more but I was sooooo bored in the hospital overnight.
> 
> With RAI my nuclear med guy (they are all different) said it would depend on the job and if he is around children or pregnant women how long you would need to stay off the job.  If not around either my nuc med dr said back to work after 3 days home after radiation.  So if he can get it on a Friday he could go back Tuesday.  I don't know what it would have been around children or pregnant women though since it didn't effect me.  Your nuclear med guy or state could have a totally different set of rules though.  He could call the hospital and ask for someone in nuclear medicine and ask them if he needs to know now.
> 
> Oh and before taking the therapy RAI he will need two days for whole body scans.  He will go in one day and take a low dose RAI pill and then wait about 4 hours to get the first scan, the next day he gets the second scan.  Scans take 1 hour each for me.  That is when they know what dose of therapy RAI to order and when to schedule the therapy dose.  Then a week after the therapy dose of RAI he will go in for another WBS so they can see what tissue the RAI settled into.  Then he is done for about 6-8 weeks to get a blood test to see how his TSH levels are doing.  At least this is how it is going for me.



Regarding whole body scans:  remember mine was 22 years ago and I was super hypo due to no synthroid for the scan and was feeling miserable - but I wish I had Been mentally prepared for the scan. I had never had a medical problem before the thyroid trouble, and was only in my late 20's.  had no idea what to expect. Granted, there is no pain involved, but the whole process of a big machine so close to you and having to remain still and feeling alone was very unnerving. So was the fact another patient was being scanned in the room and it was a toddler. Due to my emotional mindset at the time, the fact that a child so young was ill really upset me.  I just mention this so anyone going through this feels they are not alone if they get emotional during their treatments. ((Hugs))

"SingingMom" ....Sent from my iPad using DISBoards


----------



## Christine

angwill said:


> Good to hear your husband is doing well.  I was so lucky that I did not have a sore throat but I was told not to talk or as little as possible for a day or two.  I didn't listen however.  Too many nurses coming and going and my husband and son were there with me.  Maybe if my throat hurt I would have shut up more but I was sooooo bored in the hospital overnight.
> 
> With RAI my nuclear med guy (they are all different) said it would depend on the job and if he is around children or pregnant women how long you would need to stay off the job.  If not around either my nuc med dr said back to work after 3 days home after radiation.  So if he can get it on a Friday he could go back Tuesday.  I don't know what it would have been around children or pregnant women though since it didn't effect me.  Your nuclear med guy or state could have a totally different set of rules though.  He could call the hospital and ask for someone in nuclear medicine and ask them if he needs to know now.
> 
> Oh and before taking the therapy RAI he will need two days for whole body scans.  He will go in one day and take a low dose RAI pill and then wait about 4 hours to get the first scan, the next day he gets the second scan.  Scans take 1 hour each for me.  That is when they know what dose of therapy RAI to order and when to schedule the therapy dose.  Then a week after the therapy dose of RAI he will go in for another WBS so they can see what tissue the RAI settled into.  Then he is done for about 6-8 weeks to get a blood test to see how his TSH levels are doing.  At least this is how it is going for me.



In my area, they no longer do the "pre-scans" as they are concerned with the low-dose RAI (tracer) causing "stunning" of the thyroid gland.


----------



## angwill

SingingMom said:


> Regarding whole body scans:  remember mine was 22 years ago and I was super hypo due to no synthroid for the scan and was feeling miserable - but I wish I had Been mentally prepared for the scan. I had never had a medical problem before the thyroid trouble, and was only in my late 20's.  had no idea what to expect. Granted, there is no pain involved, but the whole process of a big machine so close to you and having to remain still and feeling alone was very unnerving. So was the fact another patient was being scanned in the room and it was a toddler. Due to my emotional mindset at the time, the fact that a child so young was ill really upset me.  I just mention this so anyone going through this feels they are not alone if they get emotional during their treatments. ((Hugs))
> 
> "SingingMom" ....Sent from my iPad using DISBoards



Wow it is good to hear different views on this.  I was super hypo and feeling awful for mine too and I was having anxiety issues.  Mine was alone in a room and because I was so tired from hypohell I passed out during all my scan.  Thank goodness when I sleep I don't move.    I can imagine having a child in the same room going through that would not be comforting.



Christine said:


> In my area, they no longer do the "pre-scans" as they are concerned with the low-dose RAI (tracer) causing "stunning" of the thyroid gland.



What is stunning?  Remember my doctors here don't believe in LID diet so it would make sense they probably don't believe in stunning, whatever it is.  

I do wonder if they can tell how much RAI is taken into tissues with the diet and without and all that other stuff?  They did tell me the remaining tissues took in the radiation and everything looked good afterward.  I still need to request copies of the results of all the scans from the hospital.


----------



## Christine

angwill said:


> Wow it is good to hear different views on this.  I was super hypo and feeling awful for mine too and I was having anxiety issues.  Mine was alone in a room and because I was so tired from hypohell I passed out during all my scan.  Thank goodness when I sleep I don't move.    I can imagine having a child in the same room going through that would not be comforting.
> 
> 
> 
> What is stunning?  Remember my doctors here don't believe in LID diet so it would make sense they probably don't believe in stunning, whatever it is.
> 
> I do wonder if they can tell how much RAI is taken into tissues with the diet and without and all that other stuff?  They did tell me the remaining tissues took in the radiation and everything looked good afterward.  I still need to request copies of the results of all the scans from the hospital.



Stunning is when they give you a dose of RAI (and even the tracer doses is fairly significant) and the gland absorbs it all and gets full of iodine.  This iodine stays in your thyroid gland for several weeks (long half life).  So when they go to give you the treatment dose, your thyroid gland is already full of iodine so it doesn't take it up as much.

Most of the thyroid gurus in the country definitely buy into stunning.  Doctors who don't necessarily "practice" a lot of thyroid cancer don't overly buy into it.  They think that the large dose they give is enough to overcome the tracer dose.  Probably in many cases it is, but I often wonder why these doctors don't give the patient the optimum treatment.  The LID can't hurt you and it *might* definitely help treatment.  The pre-scan does of RAI was sort of deemed no longer a necessary step, could impact treatment, etc...  I thought the nuclear community had determined various set doses based on risk factors.


----------



## mrsklamc

angwill said:


> That is wonderful news for your MIL. Yeah!!! Can you be with her for the radiation?



Probably not for all of it- it's 4-6 weeks and they live about 10 hours away- longer when you are pregnant, and have to shift around/walk more often, and go to the bathroom about once an hour. DH's cousin is a SAHM though and has constantly been begging to come over and do anything she can. They see the oncologist tomorrow so we will have a better idea of what the schedule will look like after that.


----------



## DMLAINI

Thanks everyone!!!  This thread is soooo helpful. Idk if the surgeon took lymph nodes.  We removed the entire thyroid & glands.


----------



## luvmarypoppins

DMLAINI said:


> Thanks everyone!!!  This thread is soooo helpful. Idk if the surgeon took lymph nodes.  We removed the entire thyroid & glands.



Hmm, by "glands" do you mean salivary glands or parathyroid glands etc.?

Oh and if your dh does have to get rai def. ask about getting thyrogen. 

Does your dh have an endo yet?

We can help you out with the LID if that is needed too.

I am thankful for this thread too. My hosp., the np, nutritionist, rad. onc., endo were all pretty good as they work on one cancer team but I still had lots of questions. My head was spinning post surgery too.


----------



## angwill

Christine said:


> Stunning is when they give you a dose of RAI (and even the tracer doses is fairly significant) and the gland absorbs it all and gets full of iodine.  This iodine stays in your thyroid gland for several weeks (long half life).  So when they go to give you the treatment dose, your thyroid gland is already full of iodine so it doesn't take it up as much.
> 
> Most of the thyroid gurus in the country definitely buy into stunning.  Doctors who don't necessarily "practice" a lot of thyroid cancer don't overly buy into it.  They think that the large dose they give is enough to overcome the tracer dose.  Probably in many cases it is, but I often wonder why these doctors don't give the patient the optimum treatment.  The LID can't hurt you and it *might* definitely help treatment.  The pre-scan does of RAI was sort of deemed no longer a necessary step, could impact treatment, etc...  I thought the nuclear community had determined various set doses based on risk factors.



I don't get the problem if the ultimate outcome is to have the leftover tissue and thyroid cancer cells take in as much RAI as possible. So it takes in the smaller tracer dose and then fills the rest with the theraputic dose and in the end it gets fulll of RAI which is the ultimate goal, right?  Or is the the strength so they are getting a small strength and then filling the rest with the larger strength?  I think I am not understand it all but I am trying.  I honestly have not seen anything about this on the thyca website or boards so it is interesting to me.  

To be quite honest on the LID diet I was so extremely relieved to find out my endo didn't buy into the diet in the end.  I was so depressed, anxious, tired, and miserable I could have cared less if I dropped dead from the cancer during the time I would have had to follow the diet.  Honestly, everything major that could have happened to derail my healing happened between the TT and the RAI for my family and I that not having to really worry about LID but just being careful and having LID foods in the fridge and freezer was more than enough for me.  I do not have any extended family to help me out either unfortunatly and neither my husband nor my son have a clue how to cook anything but eggs in the microwave. lol  I think I got my dream doctor in that respect.  I would have gladly skipped the two WBS before treatment too though.  It would have saved me a lot of money being that I am a cash payer.  I now have bills coming out the wazoo and getting them to agree to small payments and not paying in full without sending me to collections is a big challenge right now with some of the companies so skipping those would have been a financial relief if anything.


----------



## angwill

DMLAINI said:


> Thanks everyone!!!  This thread is soooo helpful. Idk if the surgeon took lymph nodes.  We removed the entire thyroid & glands.



Glad we could help.  I got lots of help over the last couple months here and am very thankful.  You can also check out the thyca boards.  I hope they only took the thyroid and not parathyroid glands.  Just ask the doctors what they took and ask for a copy of the results when you go in for the follow up visit.


----------



## angwill

luvmarypoppins said:


> Hmm, by "glands" do you mean salivary glands or parathyroid glands etc.?
> 
> Oh and if your dh does have to get rai def. ask about getting thyrogen.
> 
> Does your dh have an endo yet?
> 
> We can help you out with the LID if that is needed too.
> 
> I am thankful for this thread too. My hosp., the np, nutritionist, rad. onc., endo were all pretty good as they work on one cancer team but I still had lots of questions. My head was spinning post surgery too.



Your thyrogen question reminded me of a question I have for Christine if she knows.  My doctor said they would not do thyrogen for the therapy dose only for my 6 month WBS to see how the RAI is working.  Is there a reason why some doctors use thyrogen for the theraputic RAI and some make you go naturally hypo?


----------



## Christine

angwill said:


> Your thyrogen question reminded me of a question I have for Christine if she knows.  My doctor said they would not do thyrogen for the therapy dose only for my 6 month WBS to see how the RAI is working.  Is there a reason why some doctors use thyrogen for the theraputic RAI and some make you go naturally hypo?



It's one of those "balances of benefits" thing.

Having a "hypo" therapy dose is the best thing for treatment.  Being truly hypo with a high TSH cause the thyroid gland to be truly avid and makes it really *want* to suck up iodine.  The medical community relies on this to make sure the patient gets the ultimate/best scenario during the first treatment.  Optimal treatment during the first dose ensures a much better outcome, long term.  This is why many doctors also recommend the LID and have moved away from using tracer doses of RAI prior to the therapy dose.  The goal is to make the thyroid absolutely starved.

The thought is that Thyrogen does not produce that sane effect.  TSH rates do not generally rise as high as they do during withdrawal and the window for the rise in TSH is about 3 days.  While treatment can be given with Thyrogen as well as scans, the general consensus is that the it doesn't do it as well as being off meds.  For some, being off meds is a health risk (the elderly or people with other health complications) so a Thyrogen therapy dose is the next best thing for them.


----------



## luvmarypoppins

ang - hmm. I dont honestly remember having to have a 6th month scan post rai.

I do remember having to have blood tests to check the tsh or tg every three months.

I know my onc says it takes the rai up to a year to kill all the leftover tissue. So I am just wondering why you have to have a 6th month scan versus just having a blood test to see if everything is stable.

Christine - maybe you can enlighten us.

Christine - also how are you feeling, both physically and emotionally. I hope you are healing, but I am sure it will be a process. 

Just read a little news blurb that obese people are being short changed with the chemo dose.

Hmm and this sheds light also on how do they figure out your rai dose, because I know my onc. said she takes weight into consideration too. She has a whole formula. I am really big anyway so it was a big dose for me plus the aggressiveness.  I am wondering if anyone knows the formula. That would interest my dh probably since he always looks at things from a scientific viewpoint etc.


----------



## Christine

luvmarypoppins said:


> ang - hmm. I dont honestly remember having to have a 6th month scan post rai.
> 
> I do remember having to have blood tests to check the tsh or tg every three months.
> 
> I know my onc says it takes the rai up to a year to kill all the leftover tissue. So I am just wondering why you have to have a 6th month scan versus just having a blood test to see if everything is stable.
> 
> Christine - maybe you can enlighten us.
> 
> Christine - also how are you feeling, both physically and emotionally. I hope you are healing, but I am sure it will be a process.
> 
> Just read a little news blurb that obese people are being short changed with the chemo dose.
> 
> Hmm and this sheds light also on how do they figure out your rai dose, because I know my onc. said she takes weight into consideration too. She has a whole formula. I am really big anyway so it was a big dose for me plus the aggressiveness.  I am wondering if anyone knows the formula. That would interest my dh probably since he always looks at things from a scientific viewpoint etc.



I had a 6 months scan after my first treatment.  That was the way they did things "back then" but I don't think they do that anymore because they now know that it generally takes 1 year to see the full effect.  It's amazing how much medical practices change over time.

I'm feeling fairly anxious lately.  It's amazing that you think these things don't really bother you and they do.  I've been hearing horrible stories (that don't make the news thankfully) from friends in the building.  We've been told that we will not get back into the building for "weeks to months".  FBI still has possession of the building.  After that, it will go back to the Navy and floors 1-4 (especially floors 3&4) will need extensive repairs and cleaning.

Fortunately I have the tools to telework.  Many don't so they are trying to figure out what to do with them and are trying to get that to alternate work sites that have the access they need.

It's just really depressing.


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## angwill

Christine,  Thank you for defining that for me.  I am getting it.  I think I will ask to put off my 6 month WBS to a year and hope my endo will be open to it.  I know they said they saw uptake in my left armpit that the Endo and Surgeon had never seen before so I think they want to check on that at 6 months.  There should be no way for the RAI to get to the pit without a trail through the lymph nodes, which it did not show, if it is truly there.  After asking on the thyca boards and hearing from someone who worked in nuc med they said that because of the technology not being perfect and how it works off of magnatism sometimes it will throw off a ghost shadow to places like the arm pit that actually is not where the iodine settled.  After hearing that I am not worried about it at all and wonder why the Endo talked to the surgeon and not the rad med doctors.  

Christine were you working on the Navy base where the shooting took place?  I am so sorry if you had to live through that tragedy.  I am glad that you can telework at least but so sorry you are going through all that madness.

LMP,
That is interesting about the Chemo and those that are obese.  I would think they would have formulations like with anethesia?  I just googled formulation for RAI dose and came up with this   http://jnm.snmjournals.org/content/44/3/451.full  Maybe that will keep your husbands scientific mind busy.  Let us know what he learns.  

Ang


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## Christine

angwill said:


> Christine,  Thank you for defining that for me.  I am getting it.  I think I will ask to put off my 6 month WBS to a year and hope my endo will be open to it.  I know they said they saw uptake in my left armpit that the Endo and Surgeon had never seen before so I think they want to check on that at 6 months.  There should be no way for the RAI to get to the pit without a trail through the lymph nodes, which it did not show, if it is truly there.  After asking on the thyca boards and hearing from someone who worked in nuc med they said that because of the technology not being perfect and how it works off of magnatism sometimes it will throw off a ghost shadow to places like the arm pit that actually is not where the iodine settled.  After hearing that I am not worried about it at all and wonder why the Endo talked to the surgeon and not the rad med doctors.
> 
> Christine were you working on the Navy base where the shooting took place?  I am so sorry if you had to live through that tragedy.  I am glad that you can telework at least but so sorry you are going through all that madness.
> 
> Ang



Ang,

How deep did they think the armpit thing was?  Reason I ask is that many women can have breast tissue under the arm and breast tissue does take up iodine so if you had breast tissue there, that might be the answer.  Usually it's fairly superficial and not as deep as a node.

Yes, I was in the Navy Yard BLDG 197 during the shooting.  That's the building I work in.  I work on the 5th floor and the shooter never came there, thank god.  But a woman on my floor was shot exiting the stairwell.  If you watched the news, she was the one shot in the shoulder and airlifted off the roof.  Our captain was behind her in the stairwell and got her back up after she was shot (because they weren't going to go down where he was).


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## angwill

Christine said:


> Ang,
> 
> How deep did they think the armpit thing was?  Reason I ask is that many women can have breast tissue under the arm and breast tissue does take up iodine so if you had breast tissue there, that might be the answer.  Usually it's fairly superficial and not as deep as a node.
> 
> Yes, I was in the Navy Yard BLDG 197 during the shooting.  That's the building I work in.  I work on the 5th floor and the shooter never came there, thank god.  But a woman on my floor was shot exiting the stairwell.  If you watched the news, she was the one shot in the shoulder and airlifted off the roof.  Our captain was behind her in the stairwell and got her back up after she was shot (because they weren't going to go down where he was).



They didn't say how deep the armpit thing was.  So would that mean the breast tissue might have cancer in it?  Wouldn't the RAI destroy it then or would it need to be removed as well?  I do have a big chest so I would not doubt it is in that area.  That is not a possibility anyone on thyca gave so it is good to know.  I had actually forgotten about the pit spot till today. 

Wow I can not even imagine being in that building period.  How terrifying.  I take it the woman from your floor lived?  I am glad someone was there with her to get her out of there.  I am going to have to go to the news channels like CNN or HLN to see full coverage.  In IL we just got brief info and mostly about those who passed away and of course they sensationalize the perp.  I am sorry you had to live through that and hope things get back to as normal as possible for everyone quickly so they can process and heal.


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## Christine

angwill said:


> They didn't say how deep the armpit thing was.  So would that mean the breast tissue might have cancer in it?  Wouldn't the RAI destroy it then or would it need to be removed as well?  I do have a big chest so I would not doubt it is in that area.  That is not a possibility anyone on thyca gave so it is good to know.  I had actually forgotten about the pit spot till today.
> 
> Wow I can not even imagine being in that building period.  How terrifying.  I take it the woman from your floor lived?  I am glad someone was there with her to get her out of there.  I am going to have to go to the news channels like CNN or HLN to see full coverage.  In IL we just got brief info and mostly about those who passed away and of course they sensationalize the perp.  I am sorry you had to live through that and hope things get back to as normal as possible for everyone quickly so they can process and heal.



NBC 4 Washington is just now giving a great summary of what happened and you can probably just watch that on line.  At least what's going out today is much more factual.  

As for the RAI stuff, all sorts of tissue uptakes RAI--breast tissue, salivary glands, the stomach, colon.  If they ever show you your scan, it's very interesting.  The thyroid, by far, lights up the most.  No, it doesn't mean that you have cancer there.  It doesn't even mean if your thyroid area lights up that it has cancer it in--it just means you have remnant thyroid tissue, which could be perfectly normal.  The Tg test is the one that has the marker for cancer.


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## luvmarypoppins

I had shadows on my scan. The one shadow was in the salivary gland area.

They also had to take more pictures of my stomach because the tech said they "saw something". I did tell him that I had a draining stomach wound at the time. My rad. onc. knew this so that probably did not concern her either.

So sometimes they see something and then it turns out to be nothing. This was the case with me too.

Christine - wow. All the news here seems to be focusing on the perp guy because he was from around here in the NY metro area.  I am glad you can telecommute. Are they offering you any kind of counseling.

Well I just ordered my wheelchair and the town car for Disney. We need a vacation and my dh just got home from Siberia. It looks like it will be very warm weather next week end in Florida. Yeah! I love it hot! My goal is to also swim in Storm Along Bay.


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## luvmarypoppins

dmlaini - how is your dh doing? I hope he is healing and not in too much discomfort. How is his voice?

Christine - hope you are healing emotionally. I am sure it will take a long time.  

Anyone see the little blurb on yahoo shine news about thy ca. It was a simple article. I did have some issues. They said thy ca is the quiet cancer. Yeah I guess mine was too until it started roaring like a lion

They did quote something from thyca as one of their sources. They also said there is only 1 kind of aggressive thy ca. Hmm, didnt mention aggressive variants of thy ca. etc., just anaplastic as being aggressive. 

Well we leave for Disney in 4 days and my wonderful dh has started to get a really bad cold. I thought he sounded sick when he got back from Russia. He said it was really cold there so I know he must have got it there He usually never gets sick all that much I hope he gets better real fast because I just dont want any of us to be sick there. I guess I will bring lots of cold med stuff etc.

Ds3 took me for the blood tests on friday that the new internist wanted. 6 tubes of blood. Yikes!

Micayla - wishing you all the best with the sono on wed. 

Hope everyone is doing well. Check in when you can.


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## luvmarypoppins

Well this is a total dis post that is not thyroid related. Heah its good to get your mind off thy cancer once in a while right?

I was just going to look at some dining reservations and see if we could get into the crystal palace for dinner sat. night. We have the plaza right now. Well low and behold what pops up but none other than Be Our Guest.!!!!

I am shouting for dh to get me his credit card asap. Mine was in another room. So on sat. dh, I and the 2 ds wil be eating there. I know I hear the food is not great but dh has been asking about it and it will be good to try it out and not wait in the lunch line.

I am beyond. When they first opened up adrs when they opened I was on hold for 4 hours back and forth and never got anything. Have never seen anything available for dinner on all our other trips etc. Maybe its better for 4 than just 2 (dh and I ).


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## Christine

luvmarypoppins said:


> Well this is a total dis post that is not thyroid related. Heah its good to get your mind off thy cancer once in a while right?
> 
> I was just going to look at some dining reservations and see if we could get into the crystal palace for dinner sat. night. We have the plaza right now. Well low and behold what pops up but none other than Be Our Guest.!!!!
> 
> I am shouting for dh to get me his credit card asap. Mine was in another room. So on sat. dh, I and the 2 ds wil be eating there. I know I hear the food is not great but dh has been asking about it and it will be good to try it out and not wait in the lunch line.
> 
> I am beyond. When they first opened up adrs when they opened I was on hold for 4 hours back and forth and never got anything. Have never seen anything available for dinner on all our other trips etc. Maybe its better for 4 than just 2 (dh and I ).




Sounds great.  I can't wait to hear your opinions when you return.

My DD is applying to the Disney College Program.  My pessimistic nature thinks she won't get in but she is really hoping!


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## luvmarypoppins

Christine - wishing your dd all the best. I know one of ds1's friends got accepted and he declined!!! Don't know why.

Also one of the gals on the breast cancer threads dd got in and worked at Cosmic Rays.

Also I think one of ds2's friends just got accepted. I havent heard the details of that one yet.

I know ds1s friend had a lot of customer service skills. He worked in an ice cream place for a long time and a candy store sometimes too all during high school.


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## DMLAINI

luvmarypoppins said:


> dmlaini - how is your dh doing? I hope he is healing and not in too much discomfort. How is his voice?
> 
> Christine - hope you are healing emotionally. I am sure it will take a long time.
> 
> Anyone see the little blurb on yahoo shine news about thy ca. It was a simple article. I did have some issues. They said thy ca is the quiet cancer. Yeah I guess mine was too until it started roaring like a lion
> 
> They did quote something from thyca as one of their sources. They also said there is only 1 kind of aggressive thy ca. Hmm, didnt mention aggressive variants of thy ca. etc., just anaplastic as being aggressive.
> 
> Well we leave for Disney in 4 days and my wonderful dh has started to get a really bad cold. I thought he sounded sick when he got back from Russia. He said it was really cold there so I know he must have got it there He usually never gets sick all that much I hope he gets better real fast because I just dont want any of us to be sick there. I guess I will bring lots of cold med stuff etc.
> 
> Ds3 took me for the blood tests on friday that the new internist wanted. 6 tubes of blood. Yikes!
> 
> Micayla - wishing you all the best with the sono on wed.
> 
> Hope everyone is doing well. Check in when you can.






DH saw his surgeon today & was cleared to go back to work tomorrow. His voice is back to normal.  Have a great trip to Disney!!


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## luvmarypoppins

dmlaini - glad your dh voice is back to normal and that he can go back to work.

micayla -hope your sono goes well today and hope things are coming along for your mil treatment

Well the internist called me. Hmm, its not like I was expecting any good news right. Well she said 3 things are borderline and 1 test might be a false positive. She wants me to repeat something and if its still positive then she wants me to have more tests and if those are bad then she wants me to see a liver specialist, huh? Sometimes I am thinking that the leave no stone unturned philosophy is a little too much. I guess I will have a talk with her at my next appt. about how far is to far to look for stuff etc.  think its good but she does seem a little too overly aggressive in stuff. Maybe that is just her philosophy. Like super preventitive?? Well the one good thing is that she actually allled me back personally.I almost fell over.

 My former dr. waste my time only called me when I needed to be hospitalized for the blood transfusions etc. He never called with blood tests results personally or his staff otherwise. Maybe if they did it was weeks later or I would have to call myself.

Well tomm. is packing day. My poor dh sounds so sick. I doubt this will be an enjoyable vacation but we will make the best of it.


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## angwill

I need to check in more often here I am so behind.

Christine,  I am not sure how deep the under arm area was on the WBS but I will ask when I call in for my blood work.  I do need to get the records for it too.  It is good to know it might very well be just excess breast tissue. 

I hope all is well with you and your co workers.  

LMP,
How is your DH feeling with his cold?  I am not sure when your leaving for your WDW trip but I hope you have time to relax and enjoy.  That is so great that your getting into Be Our Guest, do let us know how you enjoy it.  I did read that around 1:30-2p the lines for lunch die down.  How old are your DS's?  They sound older like my son who is 18.  

I am sorry to hear the test results came back the way they did.  I sure hope you have some good health insurance.  I am always impressed with doctors that call you themselves especially with bad news.  Remember the doctor who found my mass had her nurse call me to tell me about it and then she said she was sure it was cancer and wanted me to go get a WBS before biopsy.  Then when I said I wanted a biopsy since a WBS won't tell if it is cancer the doctor told the nurse to tell me it was her way or the highway.  Some doctors should not be in the field.  The new doctor I saw told me the other doctor was nuts and sent me for biopsy called me back to tell me it was indeed cancerous.  I told her just how much her personal call meant to me.  It makes a huge difference.  I really don't appreciate an agressive doctor myself so I understand where your coming from. Oh and I don't know how true it is but I just read an article this morning about healing the liver.  It claimes that lemon in water helps create liver enzymes that are helpful along with garlic, tumeric and I forget the other two foods.  Hey it never hurts to try simple things.  

Ang


DMlaini,
Good to hear your DH is doing well and can go back to work.  Don't be surpised if he comes home exhausted and just needs a nap.  



LMP,


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## luvmarypoppins

Christine - saw some videos on tv. My heart goes out to you and your coworkers.

Well I was 2 minutes late checking in. So my poor ds are going to have like B50 in the southwest cattle car of our sold out flight, sigh. Didnt think anyone was going down now. Gosh, its school etc. 

ang - My ds are 24,23 and 21. The 23 and 21 yr. old are coming just friday to sunday. 

My dh has very good ins. We did have an hmo once and it was terrible so we picked a different plan from his work. Its more money but much better. 

Well my stuff is laid out and I will have dh help pack it.


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## SingingMom

Luvmarypoppins - have a great time and relax. Isn't it f&w right now?  That might be why all the people?

I leave next week to visit Dd20 in London with a side trip to Disneyland Paris !!!!  Once in a lifetime   Mother/daughter adventure as poor DH stays home to work and then gets ready for his knee surgery when I return.


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## Christine

luvmarypoppins said:


> Christine - saw some videos on tv. My heart goes out to you and your coworkers.



Thanks for the thoughts.  Yesterday I had to go to a contractor facility near the Navy Yard and sit on an interview panel that we had started before the shooting.

At the end of one of the interviews, one of the applicants just broke down crying.  It's so stressful for everyone.  I guess it's some form of PTSD.  They are pushing the counseling very hard.  Many offices have been going as groups to just talk about it as a group with counselors.  I haven't been yet, myself, because I really don't want to drive back up to work.


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## mrsklamc

Christine & angwill- still thinking of you. Emotionally painful, extremely difficult times for sure. 

LMP I hope you are loving your trip. Looks like it's warm enough for swimming. 

Mixed good/bad news from the sono- good news is that most of the markers for DS were NOT there, heart, brain, and lungs and umbilical cord look good, but it doesn't look like there's a nose bone so that does point to DS. Still praying for a miracle though. 

AND my cervix is shorter than it should be- not short enough to be labeled 'incompetent' though but short enough that I have to go in once a week to have it checked. It seems like there is always just one more thing.


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## luvmarypoppins

micayla - praying for you. Is this one of those sonos where it looks like a real picture? Sorry, I am not up on the new tech stuff. Are they thinking of stitching you up? My friends dd had to do that. She lost like 2 babies and they finally figured it out.  I am glad they are watching you very carefully though so that is good they are on top of everything.

Its nice weather here. It was more like a commando week end with the 2 ds. They were good for the most part and pushed me in the wheelchair a lot. They said sit down and let us push you because if you walk we will only be able to see half the stuff we want to etc.

Friday we got to met up to my cousins I havent seen them in years. Well the guy and his dd and her 2 kids and also his son who is my sons age. So it was a quick time like about 20 minutes after the Mickey Thomas and Starship concert. Loud but fun. 

Sat. we went to Hollywood Studios in the morning and then Magic Kingdom at night. We all loved Be Our Guest. We were seated in the more quieter darker West Wing. Fine with us. I can see that there rally arent many tables for 2, so I guess if we try again I am gonna put in 3 or 4 etc. It was set up nice in there and we got to have a picture with the beast. The ballroom is much brighter but more like a cafeteria, so noisy and crowded an jammed together. Our room was so dark.

Then later on my dh lost me. It was a interesting night. Ds 2 finally found me in tomorrowland. Where I waited thinking dh would remember that is the last place we were together. He had taken my phone too.

Yest. we had breakfast at the hotel with the characters and then we went to AK. The Swan was nice and now we are off to the Beach Club. Yeah, I wont have to get dressed in the bathroom again because the ds are gone.

The Food and Wine festival is expensive. My gosh! We bought each of us a $25 card and we burned through it in no time. I was sharing with the ds a lot. So far I only had the lobster slider from Hops and Barley and the sausage and streudel from Germany. I gave them my card. They had something from Africa and Australia I think. 

Well I got so sick from eating at the Coral Reef last night so I will see what happens today. That place is def. off our list now. 

Hope everyone is doing well.  

dmilani - I am sure you will probably be getting the path report this week for your dh.


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## mrsklamc

They call those 3d scans and no, we didn't have one like that- not sure if it will be offered to us or not.


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## luvmarypoppins

Singing Mom - cant wait to hear all about your trip. It sounds so exciting!

Christine - are you on furlough? My dh got a memo that says he can still come to work but they cant order anything or spend money etc. But today he tried to call someone around 5 and no one answered so he doesnt know what is going on officially as he is off to Calif. now.

Micayla - how is your mil and you too?

dmlaini - guess you will get your dh path this week

ang - how are you feeling?

Well the vacation is over. Went too fast for sure. We loved the Beach Club as always. Only 2 problems. The housekeeper calls our room at like 9:30 am asking if she could make up the room. Um, dh was sleeping and I was quietly on the laptop. Gheesh, I guess she couldnt read the do not disturb sign on the door. I was really po'd because dh works so hard and I wanted him to rest etc. sigh. 
Then we had a nice full balcony and yest we wanted to eat breakfast on it. Dh goes and gets the stuff, comes back to the room and we see a deluge of water coming down on the patio. Apparently they were power washing the floor above us, There that idea got washed away. Oh well we did get to swim in Storm A long Bay twice so that was fun.

We went back to the food and wine again. It was funny because we were watching tv in the morning and they had the epcot head chef, a german guy, on tv. Well when we went to the one booth there he was! He wasnt cooking anything, Just checking on supplies. I wanted dh to take his pic but that didnt happen.

Honestly I can see how Disney makes so much money on the F and W. It was nice but way, way too expensive. 

We really like this time of year, still a little hot but the lines for almost all stuff were not bad at all. We did actually wait in the Toy Story line for 1 hr. and 15 mins. I only did this for the ds. That was the longest. 

So now dh said he might want to go this time of year instead of May etc. 

The internist said she was sending me another lab slip for the blood work but I havent gotten anything yet. I will have to ask the ds where they put all the mail etc. Guess I will call if I dont get it next week. 

Check in when you can.


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## luvmarypoppins

Oh I forgot to mention I now have dh Russian germs and my chest hurts me from coughing and my ear has popped on the plane and I still cant hear, sigh. Everything is an echo etc. 8 hours later - this is totally frustrating me. 

Also my L jaw near my ear is bugging me on and off too, so I dont know if its a drainage problem? 

Its bearable enough not to go to the urgent care but if it gets worse I am going over the week end. 

At least I have some leftover narcotic cough syrup because lat time when I coughed it kept pulling on the neck dissection and hurt so much etc. I have taken it once this time so far.


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## mrsklamc

LMP- it's exhausting to always have something going on medically, isn't it? 

MIL is doing well...they had to wait a month post surgery before the radiation, and they are still waiting on the test to decide about the chemo. 

I have good days and bad days.


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## Christine

LMP--no I'm not on furlough.  I would have/should have been but, for some reason, the SecNav requested that those involved in BLDG 197 be excepted and the President approved that.  Not sure how I feel about that but the gesture from the head of the Navy was nice and I won't complain about that.  It is certainly nice that I don't have to worry about my paycheck an with two kids in college (one paying out of state rates) that is a huge load off my mind.

Your trip sounds like so much fun.  I really miss Disney!!! It will be awhile before I get back.  I at least have to get one of this "moneysuckers" (kids) off my tab!!!  The college stuff is killing me!!!  But it isn't forever.

I've never been in October but have always wanted to go.  May has been my favorite time but we haven't been able to do that once the kids got older.  I like a little hit when I go, but not the opressiveness of July and August.  I've never been to the F&W but want to do that one day.  I always think I might like to try one of those marathons but then I'd have to make a concerted effort to train before I go and I'm sort of lazy!!

I am still dealing with a lot of physical issues that I can't tell are thyroid related or anxiety related.  My intestines (TMI, I know) have been a mess since June.  I had a lot of issues at work and, unfortunately, they coincided with the Levoxy recall.  I've tried two new thyroid medications and I can't tell if they are the problem, or me!!  The shooting issue and being displaced at work is also weighing heavily on me and how I do my job, so who knows.  I've also had some issues when driving on the open highway at high speeds.  It's kind of like some sort of vertigo.  It's been pretty bad for the last month.  Anxiety, something else?  Hyperthyroid?  Hypothyroid?   Who knows.

I called my endo last week to get an appt.  Since I'm home now and not overly choosy about appt. times, I thought I might get in sooner but, no, it's November 1st.  I suppose I could call back and ask him to prepare me a TSH order for a lab draw but, I don't know, maybe I'll just wait the 3-4 weeks at this point.


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## luvmarypoppins

Micayla - prayers that you will have more good days than bad days

Well I had ds3 take me for the blood test. Got my usual girl. Said I am back again. She said, yeah I see that and you arent walking any better either. Hmm, I thought that was rather rude, but I think she meant it as a joke. I am getting to know her personality still.

Friday I think I will have ds take me for the xrays and then one day this week I will call the dreaded cardiology dept. and see what happens.


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## luvmarypoppins

Well I am 

They just called me from the internist and my latest blood test was showing no problems whatsoever, so I guess it was a false positive with the first test.

Yippee, no liver problems for me!!!

Micayla - how are you feeling?  Do you still have your blog. I know you mentioned you had one once. I am thinking of having one. I would like it to be more for reviewing childrens and christian books. I want to get the books and then donate them to the church/former boys school etc. I am clueless about this or if its even doable etc. I dont want to spend a lot of time and effort with it. I am thinking more like a hobby. etc. Any suggestions?

Well the weather here is terrible and poor ds3 is sick so I dont know if he can take me for the x rays tomm. We shall see. I guess I will call the cardiologist tomm.

Check in when you can everyone


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## SingingMom

luvmarypoppins said:


> Well I am   They just called me from the internist and my latest blood test was showing no problems whatsoever, so I guess it was a false positive with the first test.  Yippee, no liver problems for me!!!  Micayla - how are you feeling?  Do you still have your blog. I know you mentioned you had one once. I am thinking of having one. I would like it to be more for reviewing childrens and christian books. I want to get the books and then donate them to the church/former boys school etc. I am clueless about this or if its even doable etc. I dont want to spend a lot of time and effort with it. I am thinking more like a hobby. etc. Any suggestions?  Well the weather here is terrible and poor ds3 is sick so I dont know if he can take me for the x rays tomm. We shall see. I guess I will call the cardiologist tomm.  Check in when you can everyone



Thank goodness your liver tests came back with no problems!!

Checking in from London.  Visiting DD20 while on her break for the semester. So good to spend time mother/daughter time with her!   We were in Disneyland Paris the past three days.  Stayed in the beautiful Disneyland Hotel , directly in the park. Different experience from WDW.  Glad we went, wouldn't make a special trip to return.  

One more day in London then heading back home on Saturday. :-(   DD will be home December 6 th.

"SingingMom" ....Sent from my iPad using DISBoards


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## Christine

Well, I finally had some labwork done earlier this week because I've been feeling crazy  since mid June.  This was EXACTLY the time Levoxyl was pulled from the market.  I started with Tirosint which, I thought, was making me feel nuts.  It was hard to tell because I had such a stressful time at work (two problem employees that I had to let go).  I then researchd the generics and found a levothyroxine made by Sandoz that was very similar to Levoxyl. I then switched to that and felt a little better but not a lot.  I then found a 90-day supply of Levoxyl in my cabinet that I didn't know I had.  It was even expired, so I sort of switched back to that and felt even better.  

Yet, I knew it wouldn't last forever so I am working with the generic drug again.  Of course, during all this, the shooting occurred at work and my whole routine has been changed.  So, yeah, I don't feel right but I feel like it is out of proportion to what has happened to me.  I have had IBS almost every day since June (with a few small breaks), and have had some panic attacks and/or increased anxiety.   My period is about 3 weeks late (but that's not unusual these days since I am almost 50).  

Soooo...with all that, my TSH is usually at around 0.5.  I feel okay with this (even better if the doc would let me stay at 1.0).  Sometimes I might be at 0.35 but when I get to that level I just start feeling "not right."  My current TSH is at 0.16.  I know it doesn't sound like a lot lower but with TSH, I believe it makes quite a difference for people who are sensitive to the lower end of the spectrum.  I really, really hope it explains why I feel so poorly.  So, I am going to skip one my days of taking the medications which just about puts me at the next lower dose.

I really wish Levoxyl would come back on the market.  I was so good for so many years.  But who knows how it will be when it comes back on the market.  Will they use the same formulation/fillers?

Oh, well, sorry for the long, boring rant!  But I'm happy that I might have some explanation for feeling like a mean, crazy woman...


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## luvmarypoppins

Christine -  sorry you are dealing with this. I know its hard when you personally and your body gets use to one med and then there it goes. I am sure it will be a lot of trial and error to figure out what works best for you. Its good you got the blood work. I guess you could also use that as a baseline now.

Sorry you are dealing with all the stress. You can always rant to us, its therapeutic!!

Well I think I am going to have dh take me for the xrays today. I didnt want to bother ds yest. Also dh is stressed beyond max with all this govt. shutdown stuff. They have already laid off custodians and guards where he works. They had a big meeting and they said, next the people will go, sigh. So I feel like we are living on borrowed time right now. Glad we have a big emergency fund. 

Mon or Tues I will call cardiology. Been putting that off, but its inevitable. 

dmlaini- just wondering how your dh is.

Well check in when you can everyone


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## Christine

luvmarypoppins said:


> I didnt want to bother ds yest. Also dh is stressed beyond max with all this govt. shutdown stuff. They have already laid off custodians and guards where he works. They had a big meeting and they said, next the people will go, sigh. So I feel like we are living on borrowed time right now. Glad we have a big emergency fund.



The shutdown stinks.  I know that a lot of people in the country aren't touched by it but it's incredibly stressful for those that are. 

I've been working the whole time and due to the Pay Our Military Act, I even got paid on time, but I *don't* have a big emergency fund anymore due to both my kids being in college so the thoughts of losing pay really scared me.  At one point I could have lived off one income, but not these days.  It is stressful at work because we are expected to keep working yet have very limited funding (and I work in finance) and everyone is under immense pressure to figure out what areas REALLY need the money.


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## luvmarypoppins

I forgot to post about my little x ray experience. I went to a different place where the equip is newer as is the place. I have been there once before.

The girl had to take 3 chest xrays She said the first 2 were blurry. I was gonna say no more. If you cant get a good picture then sorry etc.
Then they did 2 each of my knee and hip. She heard my knee really creaking and cracking. I think it scared her as I saw her and the other techs faces. She said yes I heard it!'

Anyone see the little article about the just published study about the rise in thy ca. The guy from Penn. was trying to prove if more tests showed an increase. I think the conclusion was its not more thy ca being diagnosed from more unplanned testing and discovery. There is def. an increase and no one seems to know why. Yeah, doesnt take a rocket scientist to figure it out..


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## mrsklamc

I can't be too helpful with the blog- my DH set it all up...I think it was hosted with dreamhost and used wordpress.


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## turkeymama

Quick question for anyone who can help decipher numbers better than me.  I am hypothyroid (so is my mom and her sister).  I also have goiters, which I realize is fairly common.  I've had this for about 13 years now.  My numbers get a little wonky every now and then and we adjust meds up and down until we settle back into normal.  The worst was a few years ago when my levels were so off that it began to affect my blood sugar.  I seem to be leveled off at a nice low dose of synthroid right now.

DS 9 has had some weird symptoms of angioedema (idiopathic, origins unknown in other words) and urticaria.  Allergist/immunologist has not found any causes to this point and has ruled out the possible more serious causes of the symptoms.  We took him to the dermatologist to have some moles checked and she noticed his rash.  We disclosed all the other diagnoses to her and she ordered more tests, one of them being a thyroid panel and ANA screen.  The ANA screen is negative and the thyroid peroxidase was <6.  The thyroglobulin antibody was <1.0, so she says there is no indication of any autoimmune problems.  His TSH level was 3.94.  To me, that TSH level is getting close to the top of "normal".  When I asked the nurse if any of his results were bordering abnormal, she told me "no".  

I just want answers.  DS has lived with chronic constipation since he was born, he has had global developmental delays which are being addressed and improving, he is literally skin and bones with no muscle mass and low muscle tone, breaks out in hives and swells seemingly at nothing...I feel like I am failing him.  For those of you with more thyroid experience, could any of these symptoms line up with thyroid problems?


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## luvmarypoppins

turkeymama - I dont know too much about the pediatric numbers. But want to say its sounds like you are being a good advocate for your son and following up on his issues.

As a mom I would personally be more concerned with your skin and bones statement and the chronic constipation. Has your ds been to a pediatric gastroenterologist. Has he had any testing like gastric emptying, has anything been ruled out like hirschprungs etc.

Does he have sensory issues as far as eating goes? GERD issues etc. 

I would def. think of taking him to a large hosp. with a pediatric gastro specialist. 

It does seem like he is very sensitive to certain things with the hives issues. Has he had all the allergy testing? 

I know its hard when there are a lot of different puzzle pieces so to speak and you just want all the pieces to fit together. Sometimes it takes a while but trust your gut as a mom and find the answers you need for your ds.

Wishing you all the best.


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## turkeymama

luvmarypoppins said:


> turkeymama - I dont know too much about the pediatric numbers. But want to say its sounds like you are being a good advocate for your son and following up on his issues.
> 
> As a mom I would personally be more concerned with your skin and bones statement and the chronic constipation. Has your ds been to a pediatric gastroenterologist. Has he had any testing like gastric emptying, has anything been ruled out like hirschprungs etc.
> 
> Does he have sensory issues as far as eating goes? GERD issues etc.
> 
> I would def. think of taking him to a large hosp. with a pediatric gastro specialist.
> 
> It does seem like he is very sensitive to certain things with the hives issues. Has he had all the allergy testing?
> 
> I know its hard when there are a lot of different puzzle pieces so to speak and you just want all the pieces to fit together. Sometimes it takes a while but trust your gut as a mom and find the answers you need for your ds.
> 
> Wishing you all the best.



No on gastroenterologist, yes on all allergy testing, yes on sensory issues (autism).  

I may look into gastro specialist next.  We have a good endocrinologist locally too.  
When he was younger, the pediatrician kept implying and saying DS would "catch up".  He isn't catching up physically in weight.  He is really tall though.  When I plugged in some symptoms to research, I kept circling back to thyroid.  I was kind of hoping it could be that simple. 

Thanks for the reply.


----------



## skylizard

Hey everyone 
I'm newly diagnosed hypothyroid. Been on Armour 60mg for 3 weeks now and still not feeling much better. How long does it take until I start noticing a difference?
Thyroid issues suck


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## portocall

Been a long while since I visited this thread.  I ended up having my thyroid removed two weeks ago.  Pathology confirmed it was cancerous but hadn't spread.  We had been watching it for a few years since they found the goiter and I was diagnosed hypothyroid.  They only doubled my meds for now and I can already tell I need a higher dose.  I get terrible leg pain when I'm low and that's starting again.   My endo didn't have an opening until February but I mentioned out to my surgeon at the post op appointment and voila, got an email this morning that I have an appointment in two weeks.  The surgery went great and was easier than walking around with the neck pressure the last few years.  My surgeon does only head and neck surgeries so he was skilled enough to save all my parathyroid.  I did remember to ask him a lot of the points you brought up here so if any of you have any wisdom to share for what might be in the road ahead, please share.  I'm all ears.


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## luvmarypoppins

portocall said:


> Been a long while since I visited this thread.  I ended up having my thyroid removed two weeks ago.  Pathology confirmed it was cancerous but hadn't spread.  We had been watching it for a few years since they found the goiter and I was diagnosed hypothyroid.  They only doubled my meds for now and I can already tell I need a higher dose.  I get terrible leg pain when I'm low and that's starting again.   My endo didn't have an opening until February but I mentioned out to my surgeon at the post op appointment and voila, got an email this morning that I have an appointment in two weeks.  The surgery went great and was easier than walking around with the neck pressure the last few years.  My surgeon does only head and neck surgeries so he was skilled enough to save all my parathyroid.  I did remember to ask him a lot of the points you brought up here so if any of you have any wisdom to share for what might be in the road ahead, please share.  I'm all ears.



Sorry to hear about your ca dx, bu glad to hear your surgery went well. Did you have any lymph nodes removed?

Have you gotten your pathology report back yet? I think they said its usually 7 to 10 days. Mine took a while since it was the rare variant. Lots of people wanted to look at it, gheesh!

I guess your treatment plan will depend on the path. 

I would mention to the endo about how you feel for sure. I started out at 150 and after the first blood test post op she raised me to 200. Then I was 175 and now she is letting me have 150 but she said I cant go lower because of the aggressive variant. I still feel tired all the time. And I am putting on weight for no reason.

Well if you have to have the rai or do the lid diet alot of us who have done those can chime in and help you.

Wishing you all the best.


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## portocall

What is the lid diet?   I did get the pathology report back and the lymph nodes (3) were all benign.  I don't have the report handy for spelling but it was papillary follicular variety, about 3cm.  No other signs and they said no other treatment is required.  For peace of mind along I did request a body scan though.  I am putting weight on again and the leg pains.  I have enough meds to move up to 150, waiting on the doctor to give me the green light because after a few years of feeling really good, going back to the no energy, achy way of life again is unappealing.


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## luvmarypoppins

skylizard said:


> Hey everyone
> I'm newly diagnosed hypothyroid. Been on Armour 60mg for 3 weeks now and still not feeling much better. How long does it take until I start noticing a difference?
> Thyroid issues suck



Sorry I am not familiar with armour. My cousin takes it though. I think for meds like synthroid it takes 6 weeks to get the full effect, maybe I am wrong. Someone chime in. 

I hope the med works for you and you get to feeling like yourself.


----------



## luvmarypoppins

portocall said:


> What is the lid diet?   I did get the pathology report back and the lymph nodes (3) were all benign.  I don't have the report handy for spelling but it was papillary follicular variety, about 3cm.  No other signs and they said no other treatment is required.  For peace of mind along I did request a body scan though.  I am putting weight on again and the leg pains.  I have enough meds to move up to 150, waiting on the doctor to give me the green light because after a few years of feeling really good, going back to the no energy, achy way of life again is unappealing.



The lid is the low iodine diet many doctors make patients do before rai. You dont have to worry about that because your dr. said no further treatment. So I guess that is good for you for sure. Hope the scan turns out good too. Let us know.


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## luvmarypoppins

Mikayla - How are you doing?? I am asking babywise of course. Hope things are going well.

How is your mother in laws treatments going?

Prayers always.

Christine - hope things are healing emotionally for you and your co workers.My dh is on his presentation trip. We shall see what happens. I think tomm. is the q and a sessions.


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## mrsklamc

You're so thoughtful, LMP.

They think the baby might have a small hole in his heart that would have to be repaired sometime around age 1.

I am feeling very well, other than driving myself crazy trying to figure out what to register for, which would still be happening regardless of the medical stuff. 

MIL's treatments started Monday and go for 5 weeks, but just radiation, no chemo thankfully. So far she feels fine, but I hear it tends to catch up with you over time.


----------



## luvmarypoppins

Well I took the plunge and called the dreaded cardiology dept. I did find out that this testing is done in the same building as the endo so its not in the actual hosp. so I am happy not to go there.

They give me a date for the echo on Nov. 4th, the earliest and that is the same date I am suppose to go back to the internist. It will be a busy medical day. Then I ask about the stress test and can I do it the same day etc. She tells me you have to have an echo before the stress test I need and the one I am doing is 4 hours long I said I will ask about scheduling it when I go for the echo. She did say the dr. can pull up the preliminary results that afternoon so that would be good I guess.

Quickly saw dh who literally flew in last night and has flown out again this morning. Sigh. He did ask when are we going to Disney for Christmas. Hearing this ds 21 says I want to go too. Hmm, what happened to alone adult time??? Well they could only come for the week end anyway as its near finals time.  So far we already had 2 nights booked at the Beach Club for Dec. 3rd and 4th I think. I will have to work on all of that next.

Christine - I won some more books. I am now reading another Amish fiction. Its called The Dawn of Christmas by Cindy Woodsmall. Just started it. 

Micayla - I never look at the registry. I hate to shop so I usually give money or a check and just put some little things in the gift bag too. One day in the future pm me your address. I would love to send you something for the baby.  The last baby shower at church I went to the girl got 3 of the same thing. Some rocker/bouncer thing. Hmm, how did that happen?? I gave money. Cant go wrong with that! I looked her registry though and the only things left were dumb and of course the $200 plus stroller.


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## mrsklamc

luvmarypoppins said:


> Micayla - I never look at the registry. I hate to shop so I usually give money or a check and just put some little things in the gift bag too. One day in the future pm me your address. I would love to send you something for the baby.  The last baby shower at church I went to the girl got 3 of the same thing. Some rocker/bouncer thing. Hmm, how did that happen?? I gave money. Cant go wrong with that! I looked her registry though and the only things left were dumb and of course the $200 plus stroller.



I am so touched that you would ask that! It's no wonder your DS wants to be a nurse, clearly his mom taught him to care about people!


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## luvmarypoppins

Well I went for the echo yest. and they said it looks good as far as they can tell. Some of the pictures werent good and they wanted to inject something into me. I said, um no way! I also had ds there with me as a little learning experience.

Then I went to the internist. First I had a student. He was slower than molasses and he had an accent I couldnt understand. He was so slow we were the only people left in the place with the dr. Needless to say she rushed through me. She keeps insisting I get the sleep study and holter monitor. 

I got a flu shot because my immune system stinks. It takes me like 3 weeks to get rid of a cold etc.

Worst part was I gained another 12 lbs Umm this was in like the last 6 weeks again. I am really upset about this. She says I need to go on a diet. I asked her if she though the thy med needs to be increased. She said um no you need to stop eating etc. and only eat protein and no carbs. every 3 hours.

Remember I said how the last blood test from the endo had my tsh going up slightly. I dont know if even a slight amount could cause this much weight gain.

Honestly I am not eating all that more just normal as always and I am suppose to go see the endo late Jan. I think.

She sent me to this dr. and I am really not liking her all that much. I just think she has no bedside manner and is test crazy. She wants to see me in 3 months and see if I lose any weight etc. 

I honestly dont know if I should go back to the drawing board and find another gp/internist.

Oh and then I asked about this stress test at the cardiology place. They said yeah, its 4 hours with dye etc. I said what if something goes wrong? They said they will call an ambulance. 

So I asked the internist if I could to it in the hosp. because dh was sitting there saying he didnt want me to even have it etc. 

So she is going to ask the cardiology dept. if I can have it in the hosp but she said usually they only do it there for the inpatients etc.

Well if they say no we shall see where to go from there.

My head spins and I am getting so sick and tired of all this medical stuff. Thank heavens the only other thing I am doing now is the mammo.

I am def going to be needing and enjoying that disney vacation next month!

OK. enough of my carrying on. Check in when you can and give an update everyone. Hope everyone is great.


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## Christine

luvmarypoppins--you certainly are having a time of it!  I've known a few people that have had the 4 hour nuclear stress test and it's not that bad--just a VERY long day.  Whatever they inject you with is not iodine so there's a very low chance of reaction or discomfort.  But yeah, the process is 4 hours because I think after you get injected there is some time that you have to sit and wait so it's not like you are actively being stressed for 4 hours.

Not much going on here.  Last TSH had me at 0.16.  I lowered my intake of T4 and had a repeat test this past Friday.  Still waiting for those results.  I know the doctor has them because they are quick tests but he just hasn't called.

I can't say I'm feeling a lot better.  I've been having "head" issues since early September.  Maybe like a feeling of being off-balance but not quite what I would call dizzy.  It comes and goes.  The worst part is that I've been feeling funny when I drive.  It has turned into panic attacks now, while driving.  Fun stuff.  It only happens on highways where I'm going over 60mph.  I swear it's a visual/balance thing.  I keep hoping that my medication/TSH being off is the culprit but I haven't gotten much improvement since lowering my meds.  It's all just become so depressing.  

I'm still doing a lot of teleworking but trying to get up to our alternate work area once a week.  We are slated to move in permanently by January.  It stills blows my mind how one person could do so much damage.  Breathtaking.  Besides losing 12 people, I'm sure no one has realized how much this shooting is costing the taxpayer due to absolute destruction and movement of 3000 people.  

Hope everyone is feeling well and getting ready for that holiday season!


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## luvmarypoppins

So how is everyone doing? Can you believe it was snowing here today!

That inspired me to go and book the rest of our disney trip. I think it will be a good trip. Its only dh and I. The ds said they dont want to come for the week end. We are staying Dec 3 and 4th at the Beach Club in a water view room. That we are paying for with a discount and then we are staying in a garden view room from the 5th to the 8th for free with dh ff miles and then we are hopping over to the Boardwalk which we have never stayed at in a standard room from the 8-10 for free with dh ff miles. 

I am doing good with the diet I think. I am really cutting back on the carb stuff and eating a lot of fruit and vegs. Not as bad as the lid diet but we shall see what happens and only water too. 

Next up is a mammo. so I am glad that is all the med. stuff for me at the moment. 

Check in when you can. Hope everyone is well.


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## 3DisneyBuggs

Hi new here and to thyroid issues. Last Wednesday I got results of an MRI I had done for a neck injury. It showed a mass somewhere near the thyroid. I haven't had any thyroid  problems but I have been shedding hair for months. I was very nervous and saw my internal doctor that night. He felt a soft nodule on my thyroid and did bloodwork for thyroiditis. Friday I saw an endo who did an ultrasound and saw a nodule. He also said my thyroid was heterogeneous and wants the bloodwork results. Then surprise, he biopsied the nodule. I called today for the results but he is not in the office until tomorrow. I hate the waiting and not knowing.


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## Christine

3DisneyBuggs said:


> Hi new here and to thyroid issues. Last Wednesday I got results of an MRI I had done for a neck injury. It showed a mass somewhere near the thyroid. I haven't had any thyroid  problems but I have been shedding hair for months. I was very nervous and saw my internal doctor that night. He felt a soft nodule on my thyroid and did bloodwork for thyroiditis. Friday I saw an endo who did an ultrasound and saw a nodule. He also said my thyroid was heterogeneous and wants the bloodwork results. Then surprise, he biopsied the nodule. I called today for the results but he is not in the office until tomorrow. I hate the waiting and not knowing.



My best friend has developed three nodules and all her thyroid labwork is normal.  One of the nodules is so big that I've named it!!!  She's had a few biopsies now and just had one at Washington Hospital Center (which is a major thyroid cancer center) and so far, so good.  The nice part about going there is that the pathologist is in the room during the biopsy and the read the slides there.  

She is seeing a surgeon tomorrow because, even though her lumps are looking benign, the one is just too big to live with.


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## 3DisneyBuggs

Well my bloodwork was normal except for the antibody. Its not full Hashimotos byt Dr said it could develop. The biopsy showed atypical cells so they are doing genetic testing. I shoud hear next week so I am naturally very worried.


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## luvmarypoppins

3DisneyBuggs - welcome and wishing you all the best with the testing. Hoping you get good results! Just curious as to what kind of genetic testing they are doing? Does it have anything to do with the MEN syndrome. (I think its called something like that) They were checking me out for something like that. My family has a bad genetic history to begin with.

Micayla - I hope you are ok and that the tornadoes did not affect you.

Christine - hope things are doing well. 

Nothing new medically here, so that is a good thing. I am trying to be good about the diet. Tomm. I  am going to try and book a mammo. Its just crazy around her with dh traveling. He is off today to the west coast, coming back for thanksgiving and then he goes to boston the day before our trip. I told him his suitcase must be packed by that sun. and then after we come back I think 2 days later he is off to the coast again. This makes my head spin. I am getting so weary of this and i am not even the one traveling! I wish he would slow things down but that does not seem to be the case. He already said he had like 3 possible trips to Siberia next year, sigh. 

And again pixie dust got dumped on us. I am seeing it pays to look for adrs around 1 am eastern time, lol. What popped up but Be Our Guest, so I asked dh if he wanted to eat there again and he said sure! So we are going. I think the only things I have left to do for the trip is book the limo, wheelchair and the MVMCP tickets. 


Hmm, we never heard how dmiliani dh made out if he had to have radiation etc. 

Check in when you can.


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## Christine

luvmarypoppins--I think 3DisneyBuggs is referring to the Affirma/Veracyte testing which is a type of gene testing they do for inconclusive biopsies.  It's not "genetic" testing it that they are looking for anything heredity.  It is more like changes to the genes that they look for in an inconclusive biopsy that would be a better indicator for cancer.

I'm not sure how your husband does all that traveling.  I could not do it.  I find traveling extremely exhausting.  He must be a superman.

I have started taking Synthroid again after MANY years.  I have spent the summer in an awful way and, I have to say, after only a few days on it, I feel 50% better.  The dizziness has pretty much disappeared.  I'm not totally better but better enough that I think many of my problems were due to either the generic levothyroxine fillers and/or the Tirosint.  I have a hard time accepting that but I don't know what else to think.

I'm still working at home because we don't have office space.  For the first time this week, I went back into BLDG 197 at the Navy Yard.  Oddly enough, I did fine with it but it was really something else to walk through and see where all of the stuff happened.  Bullet holes ALL OVER THE PLACE, ripped up walls, carpeting, destroyed cubicles.  It's amazing how much damage one person can do.  It was sad seeing some of the areas where people lost their lives.  They have done a good job to try to make those areas neutral, but it is obvious.  A few people had laid flowers on some of the victim's desks.  It was all pretty sad.  But it did bring some sort of closure to me and I was able to tolerate being in the building.  We will probably move to our temporary location in January.

Otherwise, my friend is going through some thyroid issues and she will be having a total thyroidectomy in December.  So far everything is benign, but you never know until it's all out.  She's been receiving her treatment at the Washington Hospital Center, which is THE thyroid place in this area.  I don't go there because my treatments began well before they became the place to be with thyroid cancer.  But it's interesting how they handle things and they are very efficient and know what they are doing.  If I ever get into trouble, that's where I'll go.

Hope everyone is gearing up okay for Thanksgiving.  My son comes home tomorrow and my daughter on Sunday.


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## luvmarypoppins

Just popping in to say have a happy and blessed Thanksgiving everyone!

Well we are off to disney on tues. I had my ds help me with this fast pass plus stuff and the magic bands. I hope it works out with our 3 resort stays in one trip, etc. etc. I heard horrors of people linking their ap's to the bands but that is what we did so I will see what happens.

This time I picked blue for the both of us. Its my favorite color. Last time they just gave us both grey. I was actually thinking of getting one of us a red one and one a green for christmas, 

The next day after we come back from disney I am going for the mammo. I always am a little concerned since I already had the tumor once and throw in the thy ca too.

Check in when you can.


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## 3DisneyBuggs

I received a good message from my Doctor today - the testing they did showed no cancer. I go back for an ultrasound in May. I wish everyone on this board a happy thanksgiving and hope for a healthy 2014 and beyond. Thank you for listening to my concerns. Luvmarypoppins enjoy your trip!


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## SingingMom

Blessings to all for a Happy Thanksgiving!  Looking forward to our January WDW trip!  Last year was our first time in the winter and it was great. We have decided we don't need any more "stuff" and are taking advantage of DD long college winter break as our Christmas gift to each other. Will be extra nice to spend the time together, as DD has been in London this whole semester!

Monday to the cardiologist for regular appointment to watch Bp. Been short of breath lately, so we'll see if meds need to be adjusted.  

Stay well, everyone!

"SingingMom" ....Sent from my iPad using DISBoards


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## Christine

3DisneyBuggs said:


> I received a good message from my Doctor today - the testing they did showed no cancer. I go back for an ultrasound in May. I wish everyone on this board a happy thanksgiving and hope for a healthy 2014 and beyond. Thank you for listening to my concerns. Luvmarypoppins enjoy your trip!



Fabulous news!  Makes Thanksgiving extra special.


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## Minerva Mouse

Hi everyone   Sorry to meet under these circumstances.

Long story short.  My female doctor thought my throat felt a little "weird" back in May.  She refereed me to my doctor, who was also concerned.  Blood work, and one ultrasound later, I was told that I have hypothyroidism and a goiter.  The Dr. prescribed 50mg of Levothyroxine, blood test 60 days later confirmed that my dose needed increased.  So she increased me to 75mg. 

Six months later (today) I had another ultrasound on the thyroid to check if the medication has stopped the growth, or if it's still growing.  I received a phone call from my doctors office today.  Apparently my goiter is still growing, so I'm being refereed to a endocrinologist. 

My Mom is hypothyroid, and my Grandma is hyperthyroid.  My grandma also developed a goiter, her's was cancerous and removed.

I'm 38, been over weight most of my life.  But I'm new to all of this, and it's all so confusing.


----------



## Christine

Minerva Mouse said:


> Hi everyone   Sorry to meet under these circumstances.
> 
> Long story short.  My female doctor thought my throat felt a little "weird" back in May.  She refereed me to my doctor, who was also concerned.  Blood work, and one ultrasound later, I was told that I have hypothyroidism and a goiter.  The Dr. prescribed 50mg of Levothyroxine, blood test 60 days later confirmed that my dose needed increased.  So she increased me to 75mg.
> 
> Six months later (today) I had another ultrasound on the thyroid to check if the medication has stopped the growth, or if it's still growing.  I received a phone call from my doctors office today.  Apparently my goiter is still growing, so I'm being refereed to a endocrinologist.
> 
> My Mom is hypothyroid, and my Grandma is hyperthyroid.  My grandma also developed a goiter, her's was cancerous and removed.
> 
> I'm 38, been over weight most of my life.  But I'm new to all of this, and it's all so confusing.



Do you have a goiter (enlarged gland) or a nodule?  Goiters, themselves, aren't usually a big deal; however, nodules represent a different issue.  So I was wondering exactly what you do have (nodule(s) or goiter).  

I would say that your next step with be a biopsy of the suspicious area.  The fact that your grandmother had thyroid cancer would have me doing that.  Not that *most* thyroid cancers are considered hereditary--they are not; however, there is something to it if others in the family have had it.  

Hopefully being on meds, at least, is going to make you feel better over time.  Did they tell you what your TSH levels were?


----------



## Minerva Mouse

Christine said:


> Do you have a goiter (enlarged gland) or a nodule?  Goiters, themselves, aren't usually a big deal; however, nodules represent a different issue.  So I was wondering exactly what you do have (nodule(s) or goiter).
> 
> I would say that your next step with be a biopsy of the suspicious area.  The fact that your grandmother had thyroid cancer would have me doing that.  Not that *most* thyroid cancers are considered hereditary--they are not; however, there is something to it if others in the family have had it.
> 
> Hopefully being on meds, at least, is going to make you feel better over time.  Did they tell you what your TSH levels were?



My lab paperwork said Goiter.  When we did the original blood work, in May, my levels were around 6.5 and honestly I'm not sure I even know what that means.  I had new blood work done today (before I got the phone call that it was still growing) so I should know in a week or so, where I stand today.  

I believe your right thought, my next course of action will probably be a biopsy.  

I feel like information on the internet is confusing, like I'm not even sure what my symptoms are.  Whats normal?  Whats not normal?  I don't know how long my thyroid has been an issue.  What I do know is; 

1. Yes, I'm overweight, but I LOVE FOOD.  So I can't just say "it's my thyroid" because I defiantly over eat, and I don't make healthy meal decisions.  I have high cholesterol and high triglycerides (so I'm not sure if this from my weight or my thyroid).  I've been over weight since I was a child.

2. I've had issues with depression and I've felt "tired" for years.  I'm always tired and or lethargic.  (again, weight or thyroid)  When I lay down at night, I'm usually out cold in less than 5 minutes.     

3. I also have issues with anxiety, they began about 3 years ago.  My throat often felt like it was swelling shut, like I couldn't breath, but really, I could breath just fine.  For months, I thought it was heartburn.  I later realized it was, or is, from stress and anxiety.     

4. Muscle Aches and stiffness, always.  I've had had carpel tunnel and planter fasciitis for about 10 years.     

5. Thinning hair?  I don't know, my hair dresser says I have thin hair, but that I have a lot of it.  I honestly don't remember how long my hair has been like this.     

6. I'm always hot, I keep the house at like 68 degrees, and I turn into a puddle of sloppy wet stickyness when the temperature is over 71.  (but again, weight or thyroid)


----------



## Christine

> My lab paperwork said Goiter.  When we did the original blood work, in May, my levels were around 6.5 and honestly I'm not sure I even know what that means.  I had new blood work done today (before I got the phone call that it was still growing) so I should know in a week or so, where I stand today.



Okay, so that tells me that your doctor doesn't really know whether you just have an enlarged thyroid or one with a nodule.  But they always have to put a diagnosis on the lab order form.  A TSH of 6.5 puts you into hypothyroidism.  Not severe but definitely something that should be treated.  Ideally (without cancer), you'd want to have a TSH of between 1.0 and 2.0.  You don't have a total failure of the gland though.  That will give you TSH numbers in the double or triple digits.



> 1. Yes, I'm overweight, but I LOVE FOOD.  So I can't just say "it's my thyroid" because I defiantly over eat, and I don't make healthy meal decisions.  I have high cholesterol and high triglycerides (so I'm not sure if this from my weight or my thyroid).  I've been over weight since I was a child.



Hey, I give you PROPS for being so self-aware!  Not many people can admit that they know they eat too much.  I have a hard time with it myself.  Once I decided to log everything I was eating into Sparkpeople because I felt like I had cut back on my eating quite a bit and was still not losing weight.  Well, guess what?  The cut back version still had me eating about 2500 calories a day!  Everyone is different with their metabolism.  I have been SEVERELY hypothyroid at times during my thyroid cancer treatments and the most I ever put on due to hypothyroidism was about 10 lbs.  If I truly watch what I eat and exercise, I can lose weight.  Although, since I am almost 50 it is getting more difficult.  The high cholesterol is more often than not, hereditary and you can impact a slight bit with food choices.  The high triglycerides are an indication of too many carbs in the diet.



> 2. I've had issues with depression and I've felt "tired" for years.  I'm always tired and or lethargic.  (again, weight or thyroid)  When I lay down at night, I'm usually out cold in less than 5 minutes.



Being tired and lethargic is certainly a sign of hypothyroidism but, as you said, it is a sign of being overweight too.  I notice that the most for me.  It is also a sign of low iron or low Vitamin D.  The interesting thing for me was that when I was hypothyroid, I was often very sluggish and lacked motivation, yet, I didn't sleep well.  The fact that you are "out cold" in less than 5 minutes--that's actually a good sign.  If you sleep well through the night, it is also good.  Being hypothyroid can definitely mess with your sleep patterns.




> 3. I also have issues with anxiety, they began about 3 years ago.  My throat often felt like it was swelling shut, like I couldn't breath, but really, I could breath just fine.  For months, I thought it was heartburn.  I later realized it was, or is, from stress and anxiety.



Welcome to the club.  I've had anxiety most of my life.  It did get worse for me after the thyroid cancer.  I think that synthetic thyroid replacement just doesn't work as well for me as my own.  This summer, due to a recall of my thyroid meds, I had to change brands and my anxiety was through the roof.  I've changed to yet another brand and I seem to be doing a lot better.  I will say that I do have GERD/Reflux and when it acts up, I definitely get a panicky feeling and a racing heart.  My gastro said that's very common.  So, don't rule that out.




> 5. Thinning hair?  I don't know, my hair dresser says I have thin hair, but that I have a lot of it.  I honestly don't remember how long my hair has been like this.



Thinning hair is different than thin hair.  I also have thin hair but (thank God) tons of it.  The question is, is it getting sparse.  Can you see your scalp more easily (i.e., are you losing your hair)?




> 6. I'm always hot, I keep the house at like 68 degrees, and I turn into a puddle of sloppy wet stickyness when the temperature is over 71.  (but again, weight or thyroid)



Definitely not thyroid (unless you are OVERactive).  Probaby just you!


----------



## Minerva Mouse

Thanks Christine, and Happy Turkey Day.  

How long have you been dealing with your Thyroid?  I'm 38, so I guess I have a long road ahead of me.  

I have been loosing A LOT of hair lately, but it's also a symptom of the medicine I'm on for my triglycerides.  So again, I'm not sure which is the cause they thyroid, or the medicine.  I don't think I've ever been normal, lol.


----------



## Christine

Minerva Mouse said:


> Thanks Christine, and Happy Turkey Day.
> 
> How long have you been dealing with your Thyroid?  I'm 38, so I guess I have a long road ahead of me.
> 
> I have been loosing A LOT of hair lately, but it's also a symptom of the medicine I'm on for my triglycerides.  So again, I'm not sure which is the cause they thyroid, or the medicine.  I don't think I've ever been normal, lol.



Hope you had a great Thanksgiving!

My thyroid gland was PERFECT until I was 31 and was diagnosed with cancer.  Then I had to have it removed.  So, I guess it's going on 19 years now.  I've been mostly problem free; however, there's been a few times that things were just a mess.  Mainly in the beginning or when I was adjusting to meds.  It's been pretty quiet for years.  Then Levoxyl was recalled and I've been on three synthetic T4 meds since and I've had one of the worst time periods of my life (lots of other things going on too but this did NOT help).  I hope I'm on my way to some sort of normalcy.


----------



## Nora03

Hi,
I'm new here.  I just discovered this thread.  It looks like thyroid issues must be common.  I've only read the first and last few pages.

I noticed that my thyroid was enlarged one day and went to my doctor, who sent me for an ultrasound.  Eight weeks later the results say that my thyroid is "multi-nodular" and "looks suspicious".  Now I'm waiting for an appointment for a fine needle biopsy to see what it is.

I live in Canada, and while we have a good health care system that is "free" - no doctor's charges, test charges, or hospital charges, we have to WAIT! for everything.  The ultrasound waiting period was seven weeks and another week to get the results.  Now I'm waiting to get an appointment for the biopsy.  It is frustrating, especially since I don't know what's going on.

Do you have to wait for everything in the U.S.?

I had an enlarged thyroid about 20 years ago and all the tests were inconclusive, so the doctor put me on medication for a year and the thyroid returned to normal.  I'm hoping for the same thing this time, but "multi-nodular" and "looks suspicious" doesn't sound good.  My bloodwork showed nothing abnormal.  Any advice here? 

 I feel fine, except for a problem with my digestive system which has been acting up this year.  I have high blood pressure, under control, and a hiatus hernia, which I think is causing my digestive problem.  And, I am overweight 

Thanks, Nora


----------



## Christine

Hi Nora,

Sometimes we do have waits here in the U.S., but mainly to see specialists. 

For instance, to get a new patient appointment with a well-regarding endocrinologist, it can take 3-6 months.  Once in, though, if you were to need an ultrasound, you can book that within the week.  In the U.S., diagnostic equipment (MRIs, scans, ultrasound) is readily available.  

My friend has been going through some thyroid issues and it took her about 3 weeks to get an appointment at the thyroid center at the Washington Hospital Center (that's all that look at, all day long).  She got in with a relatively "new" endo.  It took about 2 weeks to get that radiology appt. scheduled. Another 2 weeks to get in with the surgeon.  It all happened kind of quickly, in my opinion, but in this case, they all work as a team together and I think that helps.  Had she had to book at separate places, it would have taken longer.

An ultrasound can't diagnose nodules, either benign or cancercous.  I suppose it can distinguish certain features of your nodules that lean in the direction of not being favorable; however, I don't think anyone has been every really diagnosed as one way or another on an ultrasound.  So, yes, I would say that a fine needle biopsy is in your future.  Even then, though, it's very tough to get a clean bill of health out of them, unfortunately.  It's really, really hard to get a "benign" reading out of them.   Then it's between you and your doctor and all the test results (if you get an indeterminate biopsy) to decide to wait or to proceed.  



Nora03 said:


> Hi,
> I'm new here.  I just discovered this thread.  It looks like thyroid issues must be common.  I've only read the first and last few pages.
> 
> I noticed that my thyroid was enlarged one day and went to my doctor, who sent me for an ultrasound.  Eight weeks later the results say that my thyroid is "multi-nodular" and "looks suspicious".  Now I'm waiting for an appointment for a fine needle biopsy to see what it is.
> 
> I live in Canada, and while we have a good health care system that is "free" - no doctor's charges, test charges, or hospital charges, we have to WAIT! for everything.  The ultrasound waiting period was seven weeks and another week to get the results.  Now I'm waiting to get an appointment for the biopsy.  It is frustrating, especially since I don't know what's going on.
> 
> Do you have to wait for everything in the U.S.?
> 
> I had an enlarged thyroid about 20 years ago and all the tests were inconclusive, so the doctor put me on medication for a year and the thyroid returned to normal.  I'm hoping for the same thing this time, but "multi-nodular" and "looks suspicious" doesn't sound good.  My bloodwork showed nothing abnormal.  Any advice here?
> 
> I feel fine, except for a problem with my digestive system which has been acting up this year.  I have high blood pressure, under control, and a hiatus hernia, which I think is causing my digestive problem.  And, I am overweight
> 
> Thanks, Nora


----------



## Minerva Mouse

Nora03 said:


> Hi,
> I'm new here.  I just discovered this thread.  It looks like thyroid issues must be common.  I've only read the first and last few pages.
> 
> I noticed that my thyroid was enlarged one day and went to my doctor, who sent me for an ultrasound.  Eight weeks later the results say that my thyroid is "multi-nodular" and "looks suspicious".  Now I'm waiting for an appointment for a fine needle biopsy to see what it is.
> 
> I live in Canada, and while we have a good health care system that is "free" - no doctor's charges, test charges, or hospital charges, we have to WAIT! for everything.  The ultrasound waiting period was seven weeks and another week to get the results.  Now I'm waiting to get an appointment for the biopsy.  It is frustrating, especially since I don't know what's going on.
> 
> Do you have to wait for everything in the U.S.?
> 
> I had an enlarged thyroid about 20 years ago and all the tests were inconclusive, so the doctor put me on medication for a year and the thyroid returned to normal.  I'm hoping for the same thing this time, but "multi-nodular" and "looks suspicious" doesn't sound good.  My bloodwork showed nothing abnormal.  Any advice here?
> 
> I feel fine, except for a problem with my digestive system which has been acting up this year.  I have high blood pressure, under control, and a hiatus hernia, which I think is causing my digestive problem.  And, I am overweight
> 
> Thanks, Nora



Hi Nora 

I'm new to all this too, and it looks like we're both waiting for the next step of tests.


----------



## Minerva Mouse

Christine said:


> Hope you had a great Thanksgiving!
> 
> My thyroid gland was PERFECT until I was 31 and was diagnosed with cancer.  Then I had to have it removed.  So, I guess it's going on 19 years now.  I've been mostly problem free; however, there's been a few times that things were just a mess.  Mainly in the beginning or when I was adjusting to meds.  It's been pretty quiet for years.  Then Levoxyl was recalled and I've been on three synthetic T4 meds since and I've had one of the worst time periods of my life (lots of other things going on too but this did NOT help).  I hope I'm on my way to some sort of normalcy.



Thanks Christine,

You've been a lot of help.  From what I've been told, if your going to get cancer, thyroid cancer is the one to get.  But it really sucks that anyone has to go thru this.


----------



## luvmarypoppins

3 Disneybuggs - That is wonderful news, congrats!

Nora03 - Welcome but sorry you have to be here. I am sure its so frustrating that you have to wait. I know on the breast cancer thread the one gal said that is just the system there and I think once her regular dr. did call and try to push things up for her. 

I found that is what happens here to make things go faster. Also I ask to be put on a cancellation list so if anyone cancels they will call you to take that spot etc. Dont know if you can do that in Can.?

Yes as christine said good specialists you really have to wait here and are sometimes impossible to see like heads of depts. at univ. hospitals. I have never seen one of them but do get to see some pretty good drs. in the dept. 

I have also seen unfortunately that the sicker you are, as was my case, the early you get to get into see the drs. 

Wishing you all the best and great test results.

Minerva Mouse - sorry you are dealing with all of this too and I hope you have great test results. Its good that you are aware of all your symptoms etc. I told my first reg. dr. all my symptoms and somehow he coudnt put all the pieces together of the puzzle so to speak. 

Singing Mom - I m sure you are looking forward to your trip next month too. I love the swan/dolphin location. I tried to get a room at the Swan this time but no luck with dh ff miles because its the baseball winter meetings and they are booking both places like crazy. We were there once before when those were going on and it was a zoo. Live espn tv in the lobby etc. At Shula's dh and I were having dinner next to Hank Aaron. Awesome! 

Christine - hope the synthroid is helping. Are you taking the name brand of it? I do. 

Micayla - how are things going? Miss you posting and hope you and the baby and your mil are doing well too. 

Cant believe tomm. we will be in disney eating at chefs, watching the osborne lights, illuminations and  having a fastpass to toy story, thank you magic bands. And that is only the first afternoon/night. 

Well one more load of laundry to do and that will be ready to pack. Dh is in Boston so his suitcase is packed except for some more socks. 

The weather is suppose to be really good so I cant wait! Hopefully we can get in some swim time too.


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## SingingMom

Luvmarypoppins:  have a supercalfrajalisticexpealadocious trip!!!!

"SingingMom" ....Sent from my iPad using DISBoards


----------



## Nora03

Thanks all, for your welcome and advice.  I plan to see my doctor in the next week to get a prescription refill so I'll let him know that I haven't got an appointment yet.  Maybe he can see what's going on.  I'll let you know what happens and when I get  my appointment, and results.

I forgot to mention that my sister, my only sibling, had to have her thyroid removed in her twenties, but that was a long time ago.  If I remember right it was considered "pre-cancerous" so I suppose there were suspicious cells.  She passed away four years ago from breast cancer.  

Luvmarypoppins, hope you have a wonderful trip.  Do you write trip reports, or will you let us know how your trip was?  I'm reading so much about Magic Bands and have lots of questions.  We haven't planned our 2014 trip yet, and maybe it's good that we haven't.  I'll wait to see what is happening on the health front first.  We are considering staying off site next time and wonder if/when offsite people will get magic bands.  I can't seem to find out the answer to that.

Nora


----------



## Minerva Mouse

Nora03 said:


> I forgot to mention that my sister, my only sibling, had to have her thyroid removed in her twenties, but that was a long time ago.  If I remember right it was considered "pre-cancerous" so I suppose there were suspicious cells.  She passed away four years ago from breast cancer.
> Nora



Oh Nora,  I'm so sorry to hear about your sister.  I can't imagine what that's been like.


----------



## Minerva Mouse

I now have the results of my most recent ultrasound and blood test.

My TSH levels are at 5.77

My thyroid ultrasonography reads:

The right lobe measures 5.1 x 2.1 x 1.7 cm.  The left lobe measures 5.2 x 2.1 x 2.2 cm. The isthmus measures .04 cm in AP dimension.  The gland is heterogeneous in echotexture.  There is a comlex nodule in the superior pole of the right lobe measuring 6.0 x 6.0 x 6.0 mm.  The second nodule is seen in the upper pole of the left lobe measuring 1.7 x 1.3 x .09 cm.  There is mild increased parenchymal vascularity.

Enlarged heterogeneous, slighlty vascular thyroid gland with two definable nodules in the upper poles.  The larges one is on the left side and appears to have slightly increased since the previous examination.  It previously measured 1.3 x 1.1 cm and now measures 1.7 x 1.3 x .09 cm.

So I do have two nodules.


----------



## Christine

Minerva Mouse said:


> I now have the results of my most recent ultrasound and blood test.
> 
> My TSH levels are at 5.77
> 
> My thyroid ultrasonography reads:
> 
> The right lobe measures 5.1 x 2.1 x 1.7 cm.  The left lobe measures 5.2 x 2.1 x 2.2 cm. The isthmus measures .04 cm in AP dimension.  The gland is heterogeneous in echotexture.  There is a comlex nodule in the superior pole of the right lobe measuring 6.0 x 6.0 x 6.0 mm.  The second nodule is seen in the upper pole of the left lobe measuring 1.7 x 1.3 x .09 cm.  There is mild increased parenchymal vascularity.
> 
> Enlarged heterogeneous, slighlty vascular thyroid gland with two definable nodules in the upper poles.  The larges one is on the left side and appears to have slightly increased since the previous examination.  It previously measured 1.3 x 1.1 cm and now measures 1.7 x 1.3 x .09 cm.
> 
> So I do have two nodules.




Interesting.  I think that vascularity in a nodule is a sign that they need to watch it more carefully.


----------



## Minerva Mouse

I finally called the endocrinologist today.  I have an appointment scheduled for Friday December 20th.


----------



## luvmarypoppins

Having a great time here at the Beach Club. Its in the low 80's, swam yest, went to MVMCP tonight. love the decorations. Ate dinner at Be Our Guest again

So nice not to think of drs, and thy ca for a while. This is my happy place
Just having fun with dh aka my Prince Charming!


----------



## desamnik

I was diagnosed w/ this in July.  Been having some issues that I'm not sure are related to that>

This board seems to be centered around only thyroid cancer.  So I may be posting this in the wrong forum not sure...

THX


----------



## mrsklamc

desamnik said:


> I was diagnosed w/ this in July.  Been having some issues that I'm not sure are related to that>
> 
> This board seems to be centered around only thyroid cancer.  So I may be posting this in the wrong forum not sure...
> 
> THX



Oh, no, there are probably more of us with cancer but there are some folks with Hashimotos as well. You're very welcome here!


----------



## Christine

desamnik said:


> I was diagnosed w/ this in July.  Been having some issues that I'm not sure are related to that>
> 
> This board seems to be centered around only thyroid cancer.  So I may be posting this in the wrong forum not sure...
> 
> THX



Yes, you are certainly welcome here.  The people with the most problems tend to be the loudest so that makes us cancer folks big posters!!

The Hashimoto's folks that have posted don't generally seem to have too many issues so they don't stick around.  While us cancer posters don't have the exact same issues as those with Hashimoto's, we've spent a good amount of time on the hypo/hyper rollercoaster so we may be able to give you some insight into things.


----------



## angwill

Wow I am actually getting some messages from this thread again. lol  Sorry I have been MIA.  

For the person with Hoshimoto's I have had it for many years and been hypothyroid since I was in my mid 20's.  I was diagnosed with thyroid cancer this year, about 20 years after being diagnosed with hypothyroidism, and had mine removed.  I suspected Hoshimoto's but no doctor bothered to test me for it till right before they found the cancer.


----------



## Minerva Mouse

Ok ladies, and gentlemen, if there are any in this thread.  Who's had the "fine needle aspiration biopsy?"

Honestly, how was it?  Did you do it with or without a numbing agent?  I have to admit, I'm a little nervous.  I know everyones pain tolerance is different so something like this is probably pretty hard to gauge.

I had a Electromyogram once a couple of years ago for some neck and carpel tunnel issues, and that was absolutely awful.  AWFUL!  OMGosh, I don't think you could pay me to do that again.  And at first I thought I'd be ok with the biopsy, 2 nodules, 2 pricks, in and out.  BUT, I just read that they may prick you 3 or 4 times to ensure a good sample.  So now I'm thinking, O.M.G. EIGHT. TIMES.  Noooooooooooooooooooooooooooo. 

I know everyone has their own issues. But do you ever think why me? I try not to go there, and most days don't play the "whoa is me card." But sometimes, I just feel like I've really been given a crap hand. I know, I know, it could always be worse. But I worry about my future sometimes, I'm not even 40 and I have a mound of "little issues" and I wonder what it's gonna be like in 10 or 20 more years when all these little issues aren't so little anymore.


----------



## SingingMom

Minerva Mouse said:


> Ok ladies, and gentlemen, if there are any in this thread.  Who's had the "fine needle aspiration biopsy?"  Honestly, how was it?  Did you do it with or without a numbing agent?  I have to admit, I'm a little nervous.  I know everyones pain tolerance is different so something like this is probably pretty hard to gauge.  I had a Electromyogram once a couple of years ago for some neck and carpel tunnel issues, and that was absolutely awful.  AWFUL!  OMGosh, I don't think you could pay me to do that again.  And at first I thought I'd be ok with the biopsy, 2 nodules, 2 pricks, in and out.  BUT, I just read that they may prick you 3 or 4 times to ensure a good sample.  So now I'm thinking, OMG EIGHT TIMES.  Noooooooooooooooooooooooooooo.   I know everyone has their own issues.  But do you ever think why me?  I try not to go there, and most days don't play the "whoa is me card."  But sometimes, I just feel like I've really been given a crap hand.  I know, I know, it could always be worse.  But I worry about my future sometimes, I'm not even 40 and I have a mound of "little issues", and I wonder what it's gonna be like in 10 or 20 more years when these little issues aren't so little anymore.




I know what you mean about the mound of little issues - I've had my share as have so many of us on this thread. You aren't alone. Hang in there. ;-)

As far as the fine needle biopsy, I would like to share with you my experience so you are prepared for it. The doctor and nurse may end up VERY close to your face. Just be ready for that. I have a "personal space" issue ( hate the dentist & eye doctor because they are right in my face, but can deal with any other exams) so it really unnerved me to have the endocrinologist right in my face as he did the procedure. The other thing is the position of your head, with your neck extended up.  It isn't painful as much as highly annoying. I held my husband's hand and that helped. It really doesn't take all that long.  Just keep remembering that it will be over quickly. Good luck. ((Hugs))

"SingingMom" ....Sent from my iPad using DISBoards


----------



## angwill

Minerva Mouse said:


> Ok ladies, and gentlemen, if there are any in this thread.  Who's had the "fine needle aspiration biopsy?"
> 
> Honestly, how was it?  Did you do it with or without a numbing agent?  I have to admit, I'm a little nervous.  I know everyones pain tolerance is different so something like this is probably pretty hard to gauge.
> 
> I had a Electromyogram once a couple of years ago for some neck and carpel tunnel issues, and that was absolutely awful.  AWFUL!  OMGosh, I don't think you could pay me to do that again.  And at first I thought I'd be ok with the biopsy, 2 nodules, 2 pricks, in and out.  BUT, I just read that they may prick you 3 or 4 times to ensure a good sample.  So now I'm thinking, O.M.G. EIGHT. TIMES.  Noooooooooooooooooooooooooooo.
> 
> I know everyone has their own issues. But do you ever think why me? I try not to go there, and most days don't play the "whoa is me card." But sometimes, I just feel like I've really been given a crap hand. I know, I know, it could always be worse. But I worry about my future sometimes, I'm not even 40 and I have a mound of "little issues" and I wonder what it's gonna be like in 10 or 20 more years when all these little issues aren't so little anymore.



I have a high pain tollerance and I still would have asked to be numbed if they didn't offer it.  That one shot will be the only thing that hurts then it is just a slight pressure for each needle biopsy.  I told them to make sure they took as many samples as they needed and not to stop till they had what they needed.  I got 9 samples taken on one nodule.  I read before hand that if they don't get what they need you may have to go back and I would rather be tortured good and long once than more than one shorter torture. lol In the end it really was not bad at all.  I got a pillow for under my neck so the position I had to keep it in didn't bother me at all and I was able to watch the ultrasound while they took each sample and since I couldn't feel it other than a small pressure I just pretended it wasn't me. lol  The hospital that did mine did have a lab person in the room with us who checked out each sample under a microscope to make sure they got what they needed for sure.  I heard from others that doesn't happen in most places.   I also could not have anyone in the room with me so my husband had to wait in the waiting room for me.  It probably is for the best since both of us tend to joke when we are uncomfortable in a situation and the last thing I needed was to be trying not to laugh.

In the end, I had watched you tube videos of people describing their needle biopsy and watched video of them being done and expected a heck of a lot worse than I felt it actually was.  If music helps sooth you bring in an MP3 player or ipod and keep it playing in one ear and just close your eyes and try to relax.

As for feeling sorry for yourself and worrying that isn't uncommon just don't let it suck you under.  My take on it is that I am not in charge of how or when it will be my time on this earth so I refuse to worry about something I have no control over.  If there are aspects I can control I worry about taking care of those things I can change.   Then again my whole life has been one thing after another.  Even while going through a total thyroidectomy and the RAI and suppression it was still one hard situation after another taking place round me.  That was not so easy to deal with while in hypohell.


----------



## luvmarypoppins

I had to have a lot of fna's. The surgeon who did my thy ca surgery did mine.

My dh was in the room with me and he was holding my hand for moral support.

I have a high pain tolerance too so it really didnt bother me the lst time around.

The 2nd set of fna I had were because they didnt et enough cells in the first samples so this time he said he was going to shake up my neck. Its really not that bad. You just have to stay still and they move your neck around a little more briskly.

Honestly it sounds worse than it really is. 

After all of that I had to have a core biopsy because they saw my cancer was really rare and they still didnt know what kind. That core biopsy was the worst. My dh took me to Outback for dinner after that one!

You might feel a little stingy and sore after its over. Just take some tylenol or motrin etc. 

Wishing you all the best. You can get through this. My faith brings me a lot of comfott. I hope you find something you can hold onto tight too.


----------



## Minerva Mouse

Thank you ladies, I appreciate the words.  Although I'm convinced your all conspiring against me, and that it hurts like hell.


----------



## SingingMom

Minerva Mouse said:


> Thank you ladies, I appreciative the words.  Although I'm convinced your all conspiring against me, and that it hurts like hell.



Truly, it doesn't "hurt" , it is just very annoying.  You will be fine! 

"SingingMom" ....Sent from my iPad using DISBoards


----------



## angwill

luvmarypoppins said:


> I had to have a lot of fna's. The surgeon who did my thy ca surgery did mine.
> 
> My dh was in the room with me and he was holding my hand for moral support.
> 
> I have a high pain tolerance too so it really didnt bother me the lst time around.
> 
> The 2nd set of fna I had were because they didnt et enough cells in the first samples so this time he said he was going to shake up my neck. Its really not that bad. You just have to stay still and they move your neck around a little more briskly.
> 
> Honestly it sounds worse than it really is.
> 
> After all of that I had to have a core biopsy because they saw my cancer was really rare and they still didnt know what kind. That core biopsy was the worst. My dh took me to Outback for dinner after that one!
> 
> You might feel a little stingy and sore after its over. Just take some tylenol or motrin etc.
> 
> Wishing you all the best. You can get through this. My faith brings me a lot of comfott. I hope you find something you can hold onto tight too.



Wow you had to go through a lot to find out if your nodules were cancer.  That sounds awful.  Now I feel blessed that they knew right away that mine was cancerous.


----------



## mrsklamc

Minerva- I'll spare you the details but yes, I've had my share of issues...

I promise it's true that the FNA doesn't hurt. To prove it, I will admit I did have a weird reaction- which was weird because it didn't hurt at all, and I didn't think I was nervous or panicked.

(here's what it was:http://en.wikipedia.org/wiki/Vasovagal_response)

This is very unlikely to happen to you, I just thought it might be reassuring to know that we really are being up front with you, and not hiding anything. It doesn't hurt.


----------



## Minerva Mouse

SingingMom said:


> Truly, it doesn't "hurt" , it is just very annoying.  You will be fine!
> 
> "SingingMom" ....Sent from my iPad using DISBoards





mrsklamc said:


> This is very unlikely to happen to you, I just thought it might be reassuring to know that we really are being up front with you, and not hiding anything. It doesn't hurt.



Thank you ladies.  



angwill said:


> Now I feel blessed that they knew right away that mine was cancerous.



May I ask how they knew right away that yours was cancerous?


----------



## luvmarypoppins

angwill said:


> Wow you had to go through a lot to find out if your nodules were cancer.  That sounds awful.  Now I feel blessed that they knew right away that mine was cancerous.



I first had a pet scan and already knew they were cancerous.

The surgeon wanted to know what kind of cancer it was. I didnt have a nodule, it was a 12.5 centimeter tumor crushing my trachea. It was sitting on the top of the thyroid. My dh says it was the size of a jif peanut butter lid, lol!

Then the other tumor was 4.5 centimeters. they still dont know about that one. The path. thought it might have broken off from the original tumor and maybe it was a new tumor in and about itself. That was infiltrating through the nerve I think. I dont know if the path report referred to that as a nodule. I think it said tumor. Not sure. I would have to dig it out.


----------



## luvmarypoppins

Mikayla - we need a baby update on that little guy! Hope all is well. Continued prayers for you.

Well I got my mammo results back and all is well so I am happy. 

My dh is in calif. again. sigh. 

Hope you all  have a joyous holiday season.

Check in when you can.


----------



## angwill

Minerva Mouse said:


> Thank you ladies.
> 
> 
> 
> May I ask how they knew right away that yours was cancerous?



After the first appointment for the FNA they got cells saying it was cancerous.  I feel fortunate they knew after one and didn't have to keep doing more FNA's.


----------



## angwill

luvmarypoppins said:


> I first had a pet scan and already knew they were cancerous.
> 
> The surgeon wanted to know what kind of cancer it was. I didnt have a nodule, it was a 12.5 centimeter tumor crushing my trachea. It was sitting on the top of the thyroid. My dh says it was the size of a jif peanut butter lid, lol!
> 
> Then the other tumor was 4.5 centimeters. they still dont know about that one. The path. thought it might have broken off from the original tumor and maybe it was a new tumor in and about itself. That was infiltrating through the nerve I think. I dont know if the path report referred to that as a nodule. I think it said tumor. Not sure. I would have to dig it out.



So glad to hear your tests came back good.  What a wonderful Christmas gift.  Wow and I thought mine being just over 3 centimeters was big.  I was having problems swallowing so I don't know how you coped with yours being that big.  Couldn't even picture having a peanut butter lid in my throat.  Mine was called a tumor as well.  I just thought they were all also called nodules but guess not?  I am forever learning something new about it all.  Someone on the thy ca threads made me so sad the other day when they said that with thyroid cancer, unlike other cancers, we are never cancer free or in remission and best we can hope for is being told there is no trace of cancer at this time.  For some reason that really bothers me.


----------



## Christine

angwill said:


> Someone on the thy ca threads made me so sad the other day when they said that with thyroid cancer, unlike other cancers, we are never cancer free or in remission and best we can hope for is being told there is no trace of cancer at this time.  For some reason that really bothers me.



Try not to let that get to you.  The reason that this is the case is that no surgeon can possibly remove every thyroid cell in your body.  Even RAI therapy is no guarantee of getting every cell.  Every thyroid cell has the potential to become cancerous at any time.  So, for the medical community, this is more of a "cover your butt" statement because, really, there are just no guarantees.  

And, honestly, I know that other cancers get the "clean" or "cancer free" verdict after a certain number of years but even with them, I have known them to get recurrences when they were told they were cured.  I'd rather just know ahead of time that there's always a potential and just be prepared for it.  For *most* thyroid cancer patients, you can safely consider yourself free of cancer after surgery and follow up RAI.  But because of the inability to eradicate all thyroid cells, it does require lifelong surveillance.


----------



## mrsklamc

I'm still here, just crazy busy. Today is 33 weeks and everything still looks good, as of last week I have two appointments per week to check on things, plus I work a part time job in addition to my full time job, and since I can't travel everyone was here for Thanksgiving and will be here for Christmas. Thankfully my full time job shuts down for the week between Christmas and New Year's so at least a break is on the horizon, LOL.


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## luvmarypoppins

Just poppin in to say Have Joyous and Blessed Christmas everyone


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## Minerva Mouse

Christine said:


> Try not to let that get to you.  The reason that this is the case is that no surgeon can possibly remove every thyroid cell in your body.  Even RAI therapy is no guarantee of getting every cell.  Every thyroid cell has the potential to become cancerous at any time.  So, for the medical community, this is more of a "cover your butt" statement because, really, there are just no guarantees.
> 
> And, honestly, I know that other cancers get the "clean" or "cancer free" verdict after a certain number of years but even with them, I have known them to get recurrences when they were told they were cured.  I'd rather just know ahead of time that there's always a potential and just be prepared for it.  For *most* thyroid cancer patients, you can safely consider yourself free of cancer after surgery and follow up RAI.  But because of the inability to eradicate all thyroid cells, it does require lifelong surveillance.



I did not know this.  

As for me, I met with endo on Friday.  I really liked her, she made sure I understood what was happening and took the time to address any of my concerns, which was a plus in my book.

She said that she is not concerned with my right nodule, it's complex which means that it was both a solid and a liquid mass but because of its size (about the size of a pencil eraser) there was no need to address it at this time.

However, the nodule on the left is solid, about the size of a dime, and is growing, so this one shows some concern, this one will require a biopsy as soon as I make the appointment.  I went out of town for the holiday, so I will call on Thursday to arrange the appointment.

Thank you everyone, Happy Holidays!


----------



## Christine

I probably haven't talked much about my best friend who just had her thyroid removed on December 10th.  Back in September, she had a funny mammogram and was referred to a breast surgeon.  During the breast surgeon's routine exam, he felt two nodules on her thyroid.  He immediately did an ultrasound on them and referred her to the hospital's radiology department for further evaluation.  Those reports came back benign for one nodule and indeterminate for another.  

My friend then took herself to Washington Hospital Center which is "the" thyroid place in the DC area.  They did further ultrasounds and biopsies.  Found about 6 small nodules.  Also did a biopsy which generally came back benign.  Because of the size of one the nodules (huge), they scheduled her for a total thyroidectomy.  This nodule was mixed (fluid and solid) and was pressing on her throat.

She had a great surgery.  But lo and behold, the final pathology came back with an incidental papillary thyroid cancer within the "weird" nodule.  The other small, solid nodules were fine.  She follows up with an endo in February.  The surgeon believes that they won't do further treatment since it wasn't even a "nodule" within the nodule.  It was a clump of papillary cells that measured 3mm.  Just goes to show you that you can't ever get a truly benign reading on a biopsy.  They were all pretty sure that these nodules were "fine."  I'm glad she got it out!


----------



## luvmarypoppins

Just wanted to say Happy 2014 (almost!)


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## mrsklamc

Just stopping in to say hello....Didn't know if Christine and LMP were snowbound? Yesterday was pretty bad traffic wise due to snow but not as bad as it's supposed to be this weekend- we're supposed to get 8-12 inches and they say many roads will be 'impassable.' We don't live far from the hospital but I told DH that our little one better stay put through the weekend!


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## Christine

mrsklamc said:


> Just stopping in to say hello....Didn't know if Christine and LMP were snowbound? Yesterday was pretty bad traffic wise due to snow but not as bad as it's supposed to be this weekend- we're supposed to get 8-12 inches and they say many roads will be 'impassable.' We don't live far from the hospital but I told DH that our little one better stay put through the weekend!



Thank God I am not snowbound. We got about 2 inches and it ended at midnight so we are okay.  Just a LOT of ice.  I've already been out today and it is COOOOLLLLLDDDDD....

You have got to be about ready to have that baby right???


----------



## SingingMom

About 8 inches of snow and very bitter outside!  Tuesday we leave for WDW!  So looking forward to some warm sun and time with just the 3 of us!

"SingingMom" ....Sent from my iPad using DISBoards


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## luvmarypoppins

mrsklamc said:


> Just stopping in to say hello....Didn't know if Christine and LMP were snowbound? Yesterday was pretty bad traffic wise due to snow but not as bad as it's supposed to be this weekend- we're supposed to get 8-12 inches and they say many roads will be 'impassable.' We don't live far from the hospital but I told DH that our little one better stay put through the weekend!



We had about 10 inches of snow, maybe 9.5. They closed dh job and ds1 had to go in at 1 and he is not happy. He works till 6 on fridays and they said the roads will really ice up tonight.So thankfully he doesnt work too far from home but I still worry. Tomm. we are suppose to go to a surprise 40th b day party. Dh and I decided not to go. I dont know if the ds will go. With my osteoporosis, I dont want to take a chance and slip on the ice/snow and break a bone. I already broke my leg once and it was horrid. 

My dh is leaving for a week in calif. on mon. lucky him!

Enough of me. so Micayla, when is your actual due date with the little guy??? My water never broke with any of the ds so I told dh to take me to the hosp. when the pain got really bad etc. I wish I could have had an epidural. They look like they help alot. I did get a shot of something. no one would ever give me one. They took one look at my back, the surgical scars etc and say, no way! I am glad I have a high pain tolerance.

Wishing you all the best. Thoughts and prayers for you always.


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## luvmarypoppins

SingingMom said:


> About 8 inches of snow and very bitter outside!  Tuesday we leave for WDW!  So looking forward to some warm sun and time with just the 3 of us!
> 
> "SingingMom" ....Sent from my iPad using DISBoards



I hope you have a wonderful trip. At least you are going someplace warmer for sure!

Are you eating at any place special? Of course I am obsessed with Disney food, lol! My dh only request is not Biergarten and now for the next trip he said he wants to go eat in Norway because he misses Norwegian food.We went to Norway over 30 years ago.  He wants to go back there etc.


----------



## luvmarypoppins

New Years eve, I wanted to do something as a family. So we went bowling. The place had a little party etc. 

Well I had to have dh and the ds help me up and down the lane. I used an 8 lb. ball. I bowled one game and I think I got a 24.

After that I was exhausted. I stopped because my L shoulder blade started to hurt. That is where the dissection was and I could feel stuff pulling on the L neck side too. Well when we got home it hurt really bad so I took some motrin. Next day it was still bad so I took more motrin and a hot shower.

I find it strange that the L side would hurt when I was throwing the ball with only my R hand etc. 

My dh and the ds couldnt believe I actually made it through one game, lol.


----------



## SingingMom

luvmarypoppins said:


> I hope you have a wonderful trip. At least you are going someplace warmer for sure!  Are you eating at any place special? Of course I am obsessed with Disney food, lol! My dh only request is not Biergarten and now for the next trip he said he wants to go eat in Norway because he misses Norwegian food.We went to Norway over 30 years ago.  He wants to go back there etc.



Thank you!   This is our Christmas gift to each other and DH's birthday -?we did it last year and loved going in January, so we decided to add another night this year.  So, we will be there for nine nights!  It will be nice to spend that time with DD20, who was in London this past semester. 

We made just a few ADR - afternoon tea at the Grand Floridian our arrival day, Be Our Guest one night, the Wishes Dessert Party, Il Mulino at the Swan with our friend who lives locally, and the Backstage Magic Tour that visits all three parks for 7 hours.  DD wants to eventually work for Disney, so this is for her to see some of the inner workings.  ( she & I did Disneyland Paris in October for this reason also)

We plan on eating at the wine bar in the Italy pavilion and possibly in Germany, since we just visited there with Adventures by Disney this summer.    

We'll be seeing two of our cast member friends, my cousin who is a CM, and another cousin who is an Orlando policewoman.  Probably have dinner with each in various spots near the Dolphin and Boardwalk area. Flying Fish and Beaches & Cream, as well as the new lounge at Brown Derby are also on our "maybe" list. 

We tend to play it by ear - we don't go to Disney to eat - so if there aren't open reservations, we'll find something else!  . I just want to go away to warm sunny weather!!

"SingingMom" ....Sent from my iPad using DISBoards


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## luvmarypoppins

When we were there the Brown Derby Lounge was pretty crowded with more of an adult crowd.

 I would love to try the Tutto Gusto place. I peeked in once and it was loud and crowded.

Also I would love to hear your experience if you go to Beaches and Cream because now I read you have to make an adr, not a walk up like before. I am not happy about that for sure. We would just always walk up there. I wrote something about it when Disney sent me a survey about my experience at the Beach Club resort the other week.

Sounds like you are going to have a great time and Happy Birthday to your dh!


----------



## SingingMom

luvmarypoppins said:


> When we were there the Brown Derby Lounge was pretty crowded with more of an adult crowd.  I would love to try the Tutto Gusto place. I peeked in once and it was loud and crowded.  Also I would love to hear your experience if you go to Beaches and Cream because now I read you have to make an adr, not a walk up like before. I am not happy about that for sure. We would just always walk up there. I wrote something about it when Disney sent me a survey about my experience at the Beach Club resort the other week.  Sounds like you are going to have a great time and Happy Birthday to your dh!



That's what we are looking for, a more adult crowd. Tutto Gusto was wonderful last year - food and wine flights were excellent!

"SingingMom" ....Sent from my iPad using DISBoards


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## mrsklamc

Baby boy is due 2/6, but we're supposed to get anywhere from 8-14 inches of snow tomorrow so he better stay put for the time being!


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## Minerva Mouse

SingingMom said:


> About 8 inches of snow and very bitter outside!  Tuesday we leave for WDW!  So looking forward to some warm sun and time with just the 3 of us!
> 
> "SingingMom" ....Sent from my iPad using DISBoards



Welcome to Central Florida on so far that coldest day of the year, it's currently just above the freezing mark, with 25 mph winds.  Its, sooo, cold.  We should be back in the 80s by the weekend.  But today was just unreal.

Enjoy your trip.


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## SingingMom

Minerva Mouse said:


> Welcome to Central Florida on so far that coldest day of the year, it's currently just above the freezing mark, with 25 mph winds.  Its, sooo, cold.  We should be back in the 80s by the weekend.  But today was just unreal.  Enjoy your trip.



Unfortunately, JetBlue decided to cancel our flight today and the first one they can get us on is Thursday. .   It was 6 degrees here with 21 below windchill!

Luckily, the Dolphin was more than accommodating and we were able to change our room reservations and will still stay for 9 nights. Only big disappointment was having to cancel tomorrow nights Wishes Dessert Party but they did waive the cancellation fee because we were weather delayed.   Looking forward to getting there Thursday!!

"SingingMom" ....Sent from my iPad using DISBoards


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## luvmarypoppins

Minerva Mouse - keep warm!

Singing Mom - I hope you have a great trip. I just listened to Fox 5 news and the weather guy said next week end the polar inversion is circling back around and coming here again to NY/NJ grr!

Christine - did you sign up for the 2014 book challenge on the cb? I am shooting for 24 books and I just read one and am starting on the other.I won several books from Goodreads lately to add to my pile, lol.

Micayla - how are you feeling???

The high here was 9 degrees I think and my dh who is in Calif mentioned to me he was hot when he was driving so he opened the window because it was 70 degrees!! grrr.


----------



## luvmarypoppins

O.K. - here is the interesting thyroid event of my day. Its kind of cute.

One of the christian authors I follow on facebook posted that she had thyroid problems and asked if anyone else did too. 

So lots of people commented. 2 others said they had thyroid cancer too. I told her I had thy ca and I was reading her book, loving it and then I asked her if she had her Vit D and B12 levels checked too.

Well she commented back and said she was vitd def. too!

I thought it was great that she commented about what I asked. Wow! She hasnt commented back to anyone else yet. 

I feel thyroid honored


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## Christine

luvmarypoppins said:


> Christine - did you sign up for the 2014 book challenge on the cb? I am shooting for 24 books and I just read one and am starting on the other.I won several books from Goodreads lately to add to my pile, lol.



I did not sign up for the challenge this year.  Last year, I set a goal of 24 books which I'm sure I exceeded but I had such a hard time keeping track and then posting it, that I never ended up following through.  I figured that I would not do it this year since I couldn't keep track well enough.  I'll continue to read the thread for good reading suggestions but that's about it.


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## mrsklamc

luvmarypoppins said:


> M
> Micayla - how are you feeling???
> 
> The high here was 9 degrees I think and my dh who is in Calif mentioned to me he was hot when he was driving so he opened the window because it was 70 degrees!! grrr.



70 sounds so wonderful!

I feel really good except occasionally I have a pair of feet lodged in my ribs. Sometimes I get a little blue thinking about the Down Syndrome stuff but..it is what it is.


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## SingingMom

Arrived this afternoon in WDW - muggy and sprinkles. Dropped off our bags and headed to Epcot in time for dinner & Illuminations. Tomorrow 80 & sunny while we take the Backstage Magic tour.   Looking forward to the next 9 days!  

Best to all of you!

"SingingMom" ....Sent from my iPad using DISBoards


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## luvmarypoppins

Singing Mom - have a wonderful trip. 80 sounds wonderful!! Yes, check in when you can. I love hearing about peoples trips!

Christine - I just finished reading my second book, so that is good. I guess I had a lot of free time since dh is not here but he is coming back tom.


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## luvmarypoppins

Micayla - I felt like that too. Ds 1 was the worst. He didnt have any room to go except under my ribs. 

I am sure the Downs is on your mind. My first job was working at a downs agency when I was in high school. Just in the office. You will be your childs greatest advocate no matter what. You will be the mamma bear always having her cubs best interests at heart. I know my ds3 had a lot of speech issues so he had to have early intervention speech except I was probably in denial and waited to long to start it but it all worked out in the end. He was like 18 months behind when they tested him. Maybe you can research some local resources. God has blessed you with this beautiful little guy and I know he will be a special gift to you and your dh! You will be a great mom!!


----------



## Christine

mrsklamc said:


> 70 sounds so wonderful!
> 
> I feel really good except occasionally I have a pair of feet lodged in my ribs. *Sometimes I get a little blue thinking about the Down Syndrome stuff *but..it is what it is.



You are going to do great.  It's definitely going to be a challenge at times, but as I've always heard, it comes with it's share of rewards.

I have a co-worker whose very first child (they were 18 when they had him), had Down's.  Can you imagine being 18 and dealing with that.  The young man is in his 30s now and doing very well with his own job.  

My DD, who went to a private Catholic high school which had a very focused "Options" program which was specifically for Down's students who want a private, Catholic education, really gave us some insight.  They are wonderful kids and there are so many resources out there today for them so that they can participate in life fully.  I think it's only going to get better as time goes on and, again, I think you are going to do fine once you "get your feet wet" so to speak.


----------



## mrsklamc

Christine said:


> You are going to do great.  It's definitely going to be a challenge at times, but as I've always heard, it comes with it's share of rewards.
> 
> I have a co-worker whose very first child (they were 18 when they had him), had Down's.  Can you imagine being 18 and dealing with that.  The young man is in his 30s now and doing very well with his own job.
> 
> My DD, who went to a private Catholic high school which had a very focused "Options" program which was specifically for Down's students who want a private, Catholic education, really gave us some insight.  They are wonderful kids and there are so many resources out there today for them so that they can participate in life fully.  I think it's only going to get better as time goes on and, again, I think you are going to do fine once you "get your feet wet" so to speak.



No! I _can't _ imagine being 18 and dealing with that! 

Thanks for mentioning that he has a job. I hear that more and more; the thing that makes me most anxious is the money aspect. 

Because now there are federally mandated 'early intervention' programs they say you can't compare a kid with Down's born today even with one born just 5 or ten years ago; so it's encouraging, but still a road I'd just rather not have to travel.


----------



## Minerva Mouse

SingingMom said:


> Arrived this afternoon in WDW - muggy and sprinkles. Dropped off our bags and headed to Epcot in time for dinner & Illuminations. Tomorrow 80 & sunny while we take the Backstage Magic tour.   Looking forward to the next 9 days!
> 
> Best to all of you!




I'm glad you finally got to some warmer temperatures.  

My biopsy is this Wednesday.  It was on my mind most of today.  I'm trying not to freak out, but.....  like I said, it's defiantly on my mind.


----------



## SingingMom

Minerva Mouse said:


> I'm glad you finally got to some warmer temperatures.    My biopsy is this Wednesday.  It was on my mind most of today.  I'm trying not to freak out, but.....  like I said, it's defiantly on my mind.



If you are very anxious, maybe call your doctor to tell him?  He might prescribe some Xanax to take the edge off.

"SingingMom" ....Sent from my iPad using DISBoards


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## luvmarypoppins

Minerva Mouse - I am sure you are feeling anxious. Are you going yourself or taking someone with you? Maybe think of a little treat/reward for yourself when it is over. Like starbucks, ice cream etc. Thinking of you

Singing Mom - how is your trip going? I hope you are having great weather and a great time!

Micayla - I bet you are feeling miserable right now and the bathroom needs to be close for sure! I was always miserable at the end. Hang in there sweetie!

Well I am having so many problems with my legs and I dont know why. First it was my L  leg. It was so bad I had to use my grandmas walker that we still have here. Now last night we went grocery shopping I think I overdid it and my R leg was killing me. It was so bad I took some leftover painkillers that I had. I dont know what is going on. 

On top of this middle ds has broken a toe in his foot. He is on crutches and needs to go to the ortho. I dont know how he is gonna get around college. I hope he can get a walking boot or air cast. Its his driving foot too so that is not good. 

Well I need to get the blood test soon and the sonogram. When all this needs to be done dh will be in Calif. again so I might try to get it done earlier. 

Check in when you can.


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## Nora03

Minerva Mouse - wishing you the best tomorrow for your FNA.  I have mine scheduled for next Monday.  I'm not nervous at all.  Just happy that I've finally got an appointment after such a long wait.  I'll probably be nervous on Monday though.

Hope we both get good results!

I got a crazy fortune in my New Year's fortune cookie - "Hope for the Best, but prepare for the worst"!  Isn't that crazy?  Of course the first thing I thought of is that I'm not at all worried about my results, but should I be worried?

Let us know how it goes tomorrow.  Will be thinking good thoughts for you.

Nora


----------



## Christine

Glad to hear everyone's doing somewhat okay!  Minerva Mouse, good luck with the FNA, you'll do great.  I went with my friend to hers, just in case she felt odd afterwards but she was okay.  She was all flushed when she got out of there because it took so long and she had to hold herself still--but she did fine.

Wish me luck tomorrow.  It will be my first day back to work since the shooting.  We aren't returning to the building where it occurred but to a temporary location where we will be for about a year.  I've been teleworking for 2.5 months and I am VERY anxious about reentering civilization again!


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## Minerva Mouse

SingingMom said:


> If you are very anxious, maybe call your doctor to tell him?  He might prescribe some Xanax to take the edge off.



Thanks for the idea singing mom, someone at work suggested that as well.  But I've never taken that before, so not knowing how I would react, made me decide that this may not be the best time to find out, lol.  But I can see how it would help some.



luvmarypoppins said:


> Minerva Mouse - I am sure you are feeling anxious. Are you going yourself or taking someone with you? Maybe think of a little treat/reward for yourself when it is over. Like starbucks, ice cream etc. Thinking of you



Mary, I hope your legs feel better soon. 



Nora03 said:


> Minerva Mouse - wishing you the best tomorrow for your FNA.  I have mine scheduled for next Monday.  I'm not nervous at all.  Just happy that I've finally got an appointment after such a long wait.  I'll probably be nervous on Monday though.
> 
> Hope we both get good results!
> 
> I got a crazy fortune in my New Year's fortune cookie - "Hope for the Best, but prepare for the worst"!  Isn't that crazy?  Of course the first thing I thought of is that I'm not at all worried about my results, but should I be worried?
> 
> Let us know how it goes tomorrow.  Will be thinking good thoughts for you.
> 
> Nora



Nora, I've always tried to psych myself up that way.  Plan for the worst, and hope for the best, that way you won't be disappointed.  I think it's interesting that your not worried about yours, and I've already convinced myself my cancerous.  I can't explain it, I've had other medical tests before and I knew everything was fine, and it was.  This time, I'm not so sure, I just have this feeling.  Maybe I'm wrong, guess I'll know in about week.  



Christine said:


> Glad to hear everyone's doing somewhat okay!  Minerva Mouse, good luck with the FNA, you'll do great.  I went with



Christine, I can't imagine how tomorrow might be for you.  Stay strong, take it one day at a time, things will get easier.  

You all are the best!  Thank you, thank you, thank you for the Wishes.  My appointment is at 6:30 am.  I plan on waking shortly before, heading to the appointment, then returning home for a nap.  I took a half day off of work, so I don't have to be there until 1:00 pm   and my DF is going with me, so if I don't want to drive, I won't have too.  I'll keep ya posted!


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## SingingMom

luvmarypoppins said:


> Minerva Mouse - I am sure you are feeling anxious. Are you going yourself or taking someone with you? Maybe think of a little treat/reward for yourself when it is over. Like starbucks, ice cream etc. Thinking of you  Singing Mom - how is your trip going? I hope you are having great weather and a great time!  Micayla - I bet you are feeling miserable right now and the bathroom needs to be close for sure! I was always miserable at the end. Hang in there sweetie!  Well I am having so many problems with my legs and I dont know why. First it was my L  leg. It was so bad I had to use my grandmas walker that we still have here. Now last night we went grocery shopping I think I overdid it and my R leg was killing me. It was so bad I took some leftover painkillers that I had. I dont know what is going on.  On top of this middle ds has broken a toe in his foot. He is on crutches and needs to go to the ortho. I dont know how he is gonna get around college. I hope he can get a walking boot or air cast. Its his driving foot too so that is not good.  Well I need to get the blood test soon and the sonogram. When all this needs to be done dh will be in Calif. again so I might try to get it done earlier.  Check in when you can.




Trip is going very well!  Happy to know we still have three full days to go!  Weather has been nice - last year was warmer, but it is still pleasant. Have had some exceptional meals and met up with special friends.  DD20 is enjoying interacting with characters and depending time with us. I really do love it here!

"SingingMom" ....Sent from my iPad using DISBoards


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## mrsklamc

Thinking of you today, Christine and Minerva Mouse.

Lmp- I'm not too miserable physically. It does seen like I'm always tired and hungry and have to go to the bathroom! But still a breeze compared to being hypo.


----------



## Minerva Mouse

Hi Everyone 

Well, I'm glad that's over.  Defiantly not something I want to do again any time soon.  I live here in Orlando, so I went to a facility called Sandlake Imaging, this was my third time at this facility, and I really like it.  They usually have me in and out, and are very professional.   

Anyway, they took me back and the ultrasound tech explained what was going to happen, she then took some images, and passed them on to the tech who would be responsible for stabbing me with needle.    She said they have a 96% success rate, so only four out of one hundred patients have to return.  I really, really, really hope I'm not one of the four.

The tech was super fast, I was impressed with her speed.  The initial numbing needle was a bit of bear, but tolerable, and then I just felt the pressure, and I swear she was like wiggling that needle around my neck.  I was good, thru the procedure, until she said the words "We're all done".  And then this massive rush of endorphins fled from my body, and my temperature increased to about 4,357 degrees.  I became increasingly lightheaded an nauseous, and they could see it on my face.

The tech ran out of the room, "juice, we gotta get this girl some juice"  she returned with a bottle of apple juice, which apparently helps to balance your system back out, it took a few seconds, but I almost immediately felt better.

All in all, I was in and out of the office in less than an hour.  Its defiantly not on my list of favorite procedures, but its also not at the bottom.


----------



## Nora03

Minerva Mouse - that didn't sound like fun, but it's behind you now.  I have this to look forward to on Monday.  Did they say when you'd get your results?

I suppose I'm not too worried because I had a FNA about twenty or so years ago and I don't remember it being too bad.  Not as bad as some of the procedures or surgeries I've had over the years.  Also, my results were good then, so I'm assuming and hoping they will be good this time too.

Christine, I hope you got through your first couple of days back at work.  It must be very stressful.  What a crazy world we live in now.

Nora


----------



## luvmarypoppins

Minerva - glad you are done! Now waiting is the hardest part. I think mine took about a week. Just curious were you lying down when they did it? I am also wondering about that you said a tech did your fna? I am glad your body got readjusted but that must have been scary too.

I had the surgeon do mine. I had to sit up in a chair. Another time when I had an infected lymph node I also had him do it too. I picked my endo because they said she does fna too but I have seen that office and honestly I dont know where she would do it that would be comfortable for me. I like her personality much better though.

Nora - wishing you all the best on Monday too. Who is doing your fna?

Christine - how did things go for you. I am sure it was hard on everyone.

Micayla -did the dr. give you an estimate on the babys weight?


----------



## Nora03

Luvmarypoppins - my appointment for the FNA is with a doctor.  I looked him up and he is a head and neck surgical oncologist and has a very good reputation.  He is at the largest cancer center in our city.  I was pleased to get him.

By the way, have you seen "Saving Mr. Banks"?  We saw it last week and loved it.  Thought you might like it because of your "name".  I was disappointed today to see that it received no Oscar nominations.  It is an interesting story.  I loved seeing Tom Hanks as Walt Disney.  He was perfect.  Wish Walt could have lived longer to see his dreams come to fruition. 

Nora


----------



## mrsklamc

luvmarypoppins said:


> Micayla -did the dr. give you an estimate on the babys weight?



The last time they did that was Monday the sixth. They took three sets of measurements, and the first and last were about two pounds apart (4 pounds and a few ounces to five pounds and I think 12 ounces) so I concluded that I don't think they really know.


----------



## luvmarypoppins

Here is my synthroid story of the day.

I see I need to order a refill. My bottle says no refill. Thats ok because the endo told me that they are switching over to electronic records and all refills will automatically be sent to your pharmacy etc. 

So I ask the pharmacist via phone if there is an electronic refill on file from the endo He says oh no. He is now faxing a med refill request to the endo.

I am going to tell the endo this was a big epic fail as one of my ds would say. 

They dont give you any paper refills to take with you anymore. I dont do mail order. Sigh. 

My ds is going to the ortho today. I hope they dont have to cast his foot. That would be terrible trying to get around the college campus like that.


----------



## Christine

I finished my first three days back in work. I am EXHAUSTED!!! Not used to commuting and being "on" for so long.  I probably lost 5 lbs just walking around and fretting so much. 

It was nice to be back with people, though, and I'm glad we are moving back to some order.  Most people are handling things well but I have one sort of sad story.

Yesterday I had to take a shuttle back to the where I used to work to get my parking pass renewed.  I saw one of our Wounded Warrior workers there and he had a seizure dog named Larry that we all just love.  Well, Larry was there (he's a yellow lab) and he just looked old and tired.  I said to his owner, "Hey, Larry's looking a litte down and out."  He said "Yeah, Larry's not doing to well and he's going to retire soon."  I asked what was wrong and he said that ever since the shooting, Larry has not been "right" and he can't handle any loud noises.  Since he's a service dog, he has to take tests annually and he has failed his "gunshot noise" test.  Larry looked so old but his owner said he was only 8 years old.  He looked a lot like my 13 year old dog does.   That just about broke my heart.  Who knew that dogs could suffer PTSD.  But I guess he was very close to the shots and they were extremely loud where he was.   

I did have my first little panic attack at work today (on my third day, no less) but I don't think it has anything to do with PTSD.  I just feel like since they took Levoxyl off the market, I have not been right.  I'm on Synthroid now with a TSH of 0.7 so I should be good as gold but I really do have issues.


----------



## luvmarypoppins

Nora - I hope your fna went well today

Well my ds had to get a cast on and no weight bearing. The hosp. misread his xray and its broken in a different place. A hard fracture that takes a long time to heal. 

My dh took him and it was a new ortho. We didnt like the old one who took the place of another one who retired.  Its still the same group.Well this ortho told them that ds has all the classic symptoms of the syndrome that my sister died from and wants ds to have an echo, blood work since he keeps breaking his bones etc. Wants to check his vit d levels and calcium etc. He has a horrid diet. Refuses to eat vegs. Likes sushi etc. So Micayla,I am totally relating to your genetic lottery comment

This dr. says that even though I had ds have an echo when he was 2 he feels the symptoms manifest more in teen years etc. I have told every one of ds drs. our medical history and no one has ever said anything. I am just so upset. I am praying even though I wanted to throw up at first. We have also been to the best genetic counselor in NYC who knows about this disease and she told us that that they didnt have it etc. 

I also had a good chromosome lesson in genetics about autosomal dominant things and spontaneous mutations etc. 

So tomm. we start a journey I dont want to go on again. I am glad I have my faith. That brings me a lot of comfort for sure. And its suppose to snow up to a foot starting tomm. sigh.


----------



## Nora03

luvmarypoppins - I didn't have my FNA yesterday as there was a mix up with the date.  I have to go back on Thursday for it.  

I'm so sorry your DS is having medical problems.  I hope it is not the genetic illness and that it works out for you.  Is he having testing?  Sending out pixie dust and good thoughts for you and your family.

One of our little granddaughters was diagnosed with a very rare auto immune disease about two years ago (at age 8).  At first they thought it was genetic as her Dad's family has some genetic problems and two of his siblings have serious disorders.  However, after much testing it was determined that she contracted this disease from a virus.  Very strange.  She had a bad flu shortly before she started having symptoms so they think it was that.  Long story short is that at some point in her life - could be six months to years - her kidneys will fail.  We were all devastated, but we have come to terms with it and are doing what we can to make her life normal.  She had about a year of treatments and we (grandparents) took her to lots of them, until they found a drug that has stabilized her.  Her kidneys are functioning very well right now. It is very complicated and I don't understand it all, but we feel so fortunate that there is a new drug that is helping her.  Because this disease is so rare (only one or two in a million get it) we were concerned that there would be no good treatment.  But they are working on trials and doing research all the time on many illnesses.

So, my point is that perhaps they have discovered new and better treatments since you lost your sister to this disease.  And, maybe your son doesn't have it at all.  Hoping for that.  Good luck.


----------



## luvmarypoppins

Nora - best of luck to ou tomm. Thinking of your dgd. I am sure it is hard but it seems like she is getting the best treatment she can at present.

Sat. dh is taking ds2 and I for our blood tests. Tomm. I will call for the sono appt. I didnt want to do it today because we had 13 inches of snow yest and I am sure anyone who came into work today is grouchy.

Well this new dr. thinks that ds is showing some of the symptoms especially the hands. They couldnt do an ekg because they didnt have the right machine and because of his cast. I had ds3 take him and he liked this dr. so he may switch too. Its a female who does thyroid stuff and she is also ordering some thyroid test on ds because it was on moms list . 

I will call tomm. and see when m endo visit is too because I forgot. 

Micayla - how are you feeling. I was thinking of you in the snow and thinking gosh I hope she doesnt have the baby in the snow. I worried about that too with our Jan. baby who is 24 this week. 

Christine - hope you are adjusting to work. 

Minerva - thinking of you as you wait for the results.


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## Minerva Mouse

Good evening everyone.  

It's not cancer.  All cells came back non malignant.    And no surgery required (at least at this time).

They were able to diagnose Hashimoto's Thyroiditis.  Which I'm sure some of you know more about than I do at this point.  I was told that with regular blood work, and getting my TSH levels in check, that the nodule should stop growing, and eventually shrink.  I'm currently on 88 mcg of Levothyroxine, and scheduled to recheck again in March.  My last test, in November (if memory serves) I was only at 75 mcg, and my levels were still well above 4.  I may call my doctor and see if she recommends me coming in sooner?  6 months between blood tests, seems way to long, especially when your still trying to get things in balance.

Thank you everyone for going on this journey with me, it's nice because you understand.  We may not all be sharing the same cabin, but we're all on the same boat,  and it really does help to talk and hear from people battling similar issues.


----------



## mrsklamc

LMP- The big thing here is really the wind chill; but it's funny you say that because during the one big snowstorm we had, DH kept sweeping the snow out from in front of the garage so he could have a 'headstart' if he needed to get a vehicle out. I teased him a little but the next day there was a woman on the news who had given birth at home by herself! 

Had my checkup w/ the endo this morning, she said she didn't feel anything in my neck which is a great sign because if there is something there, the pg hormones would have made it grow. 

Minerva Mouse- I am SO happy for you!


----------



## Nora03

Minerva Mouse - great news!  So happy for you.

I had my FNA today and it went well.  Just a couple of pinches with the needles and a little pressure.  I really liked the doctor.  However, he has given me a decision to make already.  He said if they don't find cancer cells he wants me to decide if I want to have my thyroid removed anyway.  He said it is because my thyroid is multi-nodular and sometimes things can be missed in the FNA.

I told him I didn't like surgery and he agreed.   I had a complete hysterectomy six years ago and it took me three full months to recover, and I'm six years older now.

Well, I have a week to think about this as I go back next Wednesday for the results.  Any advice anyone?  Is anyone else living with a multi-nodular thyroid and decided just to watch it?

Mrsklamc - when is your due date?  Is this your first?  Good luck!

Norah


----------



## mrsklamc

Nora03 said:


> Minerva Mouse - great news!  So happy for you.
> 
> I had my FNA today and it went well.  Just a couple of pinches with the needles and a little pressure.  I really liked the doctor.  However, he has given me a decision to make already.  He said if they don't find cancer cells he wants me to decide if I want to have my thyroid removed anyway.  He said it is because my thyroid is multi-nodular and sometimes things can be missed in the FNA.
> 
> I told him I didn't like surgery and he agreed.   I had a complete hysterectomy six years ago and it took me three full months to recover, and I'm six years older now.
> 
> Well, I have a week to think about this as I go back next Wednesday for the results.  Any advice anyone?  Is anyone else living with a multi-nodular thyroid and decided just to watch it?
> 
> Mrsklamc - when is your due date?  Is this your first?  Good luck!
> 
> Norah



Honestly, I don't think a thyroidectomy would be too bad- since you've had a hysterectomy it probably would just be a blip on your radar... 

My due date is 2/6 but they will induce 2/3 if I don't go into labor by then. He is our first.


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## Minerva Mouse

Nora03 said:


> Minerva Mouse - great news!  So happy for you.
> 
> I had my FNA today and it went well.  Just a couple of pinches with the needles and a little pressure.  I really liked the doctor.  However, he has given me a decision to make already.  He said if they don't find cancer cells he wants me to decide if I want to have my thyroid removed anyway.  He said it is because my thyroid is multi-nodular and sometimes things can be missed in the FNA.
> 
> I told him I didn't like surgery and he agreed.   I had a complete hysterectomy six years ago and it took me three full months to recover, and I'm six years older now.
> 
> Norah



Glad to hear your appointment went well.  You must be more of a trooper than I am.   

Unfortunately,  I cannot help with your decision.  

I can however tell you that I wouldn't take any chances and risk something spreading to the lymph nodes.  But that's just my opinion and I'm here to support whatever decision you feel is the best decision for you.


----------



## Christine

Nora03 said:


> Minerva Mouse - great news!  So happy for you.
> 
> I had my FNA today and it went well.  Just a couple of pinches with the needles and a little pressure.  I really liked the doctor.  However, he has given me a decision to make already.  He said if they don't find cancer cells he wants me to decide if I want to have my thyroid removed anyway.  He said it is because my thyroid is multi-nodular and sometimes things can be missed in the FNA.
> 
> I told him I didn't like surgery and he agreed.   I had a complete hysterectomy six years ago and it took me three full months to recover, and I'm six years older now.
> 
> Well, I have a week to think about this as I go back next Wednesday for the results.  Any advice anyone?  Is anyone else living with a multi-nodular thyroid and decided just to watch it?
> 
> Mrsklamc - when is your due date?  Is this your first?  Good luck!
> 
> Norah



Norah,

My friend recently went through this.  She had a thyroid with about 3 large nodules and 3 very small ones.  She had two rounds of FNA biopsies and all came back "benign"; however, they decided to remove the thyroid because one of the nodules was quite large and she was feeling it press on her throat.  She had the surgery in December.  Even after she was "stuck" plenty of times and they got good samples, it still did miss that she had cancer.  No biopsy is ever truly benign, just likely to be.  She ended up having a small, 3mm papillary thyroid cancer.  Luckily it was so small that she doesn't need further RAI treatment.  They will just watch her with ultrasounds for a while and keep her TSH suppressed for a few years.

If you think your thyroid is problematic, I would opt for the surgery.  Also because you just never really know what's in there.


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## mrsklamc

Saw my endo Thursday and she didn't feel anything in my neck, which is good b/c the pg hormones could make cancer cells grow.


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## luvmarypoppins

Minerva - congrats on the great news. I am sure you are relieved that is something less to worry about.

Norah - that is a hard and personal decision. I am a fan of the when in doubt take it out idea however.

Well ds and I went for our blood tests today. Shocking, apparently they either fired or reassigned everyone from the office. The one new girl I had told me she hates working here and wishes she was at the other office, oh how nice of her to say that. She said the other people were not enforcing the company rule of getting a credit card if there is a balance. She made us give a credit card. I said we never had to do this before and lucky dh was with me or we would have had to walk out as I didnt bring my credit card. I said we have never paid anything before. She said its computer generated etc just in case. Oh really. Not liking this as all. 
I have a feeling all my nice old girls who I liked will not be back. Sigh.

I didnt know when my endo visit was and its not till Feb. 19, oh well. At least the blood tests are done in case there is more bad weather.

Its snowing here again, sigh, This is getting old fast. And its so, so cold. 

Micayla - What is your nursery theme? Just curious. 

I wrote down all the tests the endo ordered. I need to look one of them up for sure.


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## Nora03

Thanks everyone for your input.  I appreciate it.  It sure helps to know others are going through these things too.  I've been flip-flopping, but in discussion with my DH and family, I'm leaning towards having it removed.  I'll let you know what the doctor says on Wednesday.

luvmarypoppins - when do you and your ds get your test results?  Hope you don't have to wait too long.

Minerva Mouse - I'm not terribly brave, but was anxious to have the FNA.  I'm terrified of surgery however, especially after having a hysterectomy.  It was no picnic.  However, I'm so glad I had it done as the pathology report showed many problems and it was a good thing I had the surgery.  

mrsklamc - my oldest was born 2/7, but that was 40 years ago.  My daughter will be 40 in a couple of weeks!  Wow, where does the time go?  I wish you all the best.  

Nora


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## luvmarypoppins

Today everyone is invited to enjoy a piece of  with me.

Yes we are having a  because today is my 5 year Cancerversary!

Cant believe 5 years ago I almost died but God is so good and listened to everyones prayers, especially dh who was sitting next to my bed for the 2 days when I was in the coma. I am thankful God gave dh wisdom to push my bed down to the or and not wait for the transport guys and also that the 2nd surgeon found the or. Nothing like being his first patient after just moving here, lol. 

Well my dh is in calif. Lucky him because we had a few inches more of snow overnight. My middle ds has blisters from his crutches and is now taking my grandmas wheelchair to college to use. Said its much better. Saw another guy on crutches and told him to get a wheelchair too, lol.

Micayala - bet you are counting the days till you meet your little guy.

Everyone check in when you can. Have a great day.


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## Nora03

luvmarypoppins - congrats!  What a wonderful day for you.  I don't know your story.  Did you and your ds get your bloodwork results yet?

I just got home from the doctor's and my results were inconclusive.  While I had decided to have the surgery, and the doctor agreed to do it, he gave me another option of waiting for three months and repeating the US and biopsy.  So, that's what I've decided to do.  I'll try to put it out of my mind for the next few months.

Off topic - our washing machine died and we had to buy a new one yesterday.  We chose a mid-priced one and with tax, delivery ($70) and we bought an extended warranty - the total is $1100.  Isn't that crazy for an ordinary washing machine, or am I living in the dark ages?

Besides the washing machine we've had to replace our PVR and had to get car repairs in the last couple of weeks.

Nora


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## SingingMom

Luvmarypoppins - happy anniversary!!  God bless!

"SingingMom" ....Sent from my iPad using DISBoards


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## mrsklamc

LMP- Congrats on 5 years! 

We kinda have two themes that don't go mixed together, LOL. I saw several things with stars on them that I liked, and had kinda gone that route, but a friend bought us a nemo crib set she knew I loved, so we have that too. My cousin did everything nemo and it is super cute. 

We had a bit of a scare and spent the night before last at the hospital for observation and were released, but they're going to induce Monday if he hasn't made his appearance by then.


----------



## luvmarypoppins

Micayla - wishing you all the best tomm. if your little guy isint here already.

Keep us updated when you can mommy!


----------



## luvmarypoppins

Micayla - we need a new mommy update! Well of course we understand if you are a little busy and havent slept either.

Singing Mom - how was the trip and of course I need to know about the food

Its official I have had it with this snow and cold. Its snowing again. Luckily I went grocery shopping with dh yest. I am giving up on getting the sono right now. Is going to snow again on thursday I think.

I will tell the endo I will get it as soon as the weather cooperates. At least I got the blood tests done.

My poor ds. He has a new cast. I dont know how he is putting up with this. At least my grandmas wheelchair is a god send since he is still non weight bearing. Maybe in 2 weeks he might get a boot the dr. said. We shall see.

Lucky dh is off to calif again on wed. and then he goes back to calif. again in 2 weeks.


----------



## SingingMom

luvmarypoppins said:


> Singing Mom - how was the trip and of course I need to know about the food  Its official I have had it with this snow and cold. Its snowing again. Luckily I went grocery shopping with dh yest. I am giving up on getting the sono right now. Is going to snow again on thursday I think.  I will tell the endo I will get it as soon as the weather cooperates. At least I got the blood tests done.  My poor ds. He has a new cast. I dont know how he is putting up with this. At least my grandmas wheelchair is a god send since he is still non weight bearing. Maybe in 2 weeks he might get a boot the dr. said. We shall see.  Lucky dh is off to calif again on wed. and then he goes back to calif. again in 2 weeks.




Trip was wonderful!  We were delayed by two days due to JetBlue canceling flights, but luckily we added the two days to the end of the trip.  Weather wasn't as great as last year same time, but we did have a few warm days. 

Here's my food reviews for you!

Flying Fish (Boardwalk) - food was good but odd combos. Enjoyed the red snapper but probably wouldn't return.
Yachtsman's Steakhouse (Yacht Club) - excellent!  Liked it much better than Shula's. We closed the place!  Ate there with CM friends. Great time!
Il Mulino's (Swan) - very good REAL Italian food. 
Tutto Gusto (Epcot Italy) - excellent appetizers, drinks, & desserts. One of our favorites. 
Biergarten (Epcot Germany) - ok. We were in Germany this summer and it was a nice reminder, but the people we sat with were rude.  Food was average. I think it would be more enjoyable with a big group
Be Our Guest - (MK) - excellent meal and neat atmosphere.  Lamb chops were great!
Brown Derby Lounge - (HS). New outdoor seating. Very limited choices. Drinks were good. Food eh. Famous Grapefruit cake not on the lounge menu, but they let us order it. 
Spice Road Table (Epcot Morocco) - new place - just opened. Indoor & outdoor seating. We sat outside. Had an overhang/roof.  Very interesting appetizers & drinks. Lamb sliders, mussels, shrimp.. We would return. 

More snow here - I wish I was back in Florida!

"SingingMom" ....Sent from my iPad using DISBoards


----------



## angwill

Stopping in to say hello.  I hope everyone is doing well.  

I have my 6 month WBS due next month.  Thanks to Obamacare it will be covered before deductible as preventative which is a nice thing about it.  

I read Micayla had her little one, congratulations!!!


----------



## angwill

luvmarypoppins said:


> Today everyone is invited to enjoy a piece of  with me.
> 
> Yes we are having a  because today is my 5 year Cancerversary!
> 
> Cant believe 5 years ago I almost died but God is so good and listened to everyones prayers, especially dh who was sitting next to my bed for the 2 days when I was in the coma. I am thankful God gave dh wisdom to push my bed down to the or and not wait for the transport guys and also that the 2nd surgeon found the or. Nothing like being his first patient after just moving here, lol.
> 
> Well my dh is in calif. Lucky him because we had a few inches more of snow overnight. My middle ds has blisters from his crutches and is now taking my grandmas wheelchair to college to use. Said its much better. Saw another guy on crutches and told him to get a wheelchair too, lol.
> 
> Micayala - bet you are counting the days till you meet your little guy.
> 
> Everyone check in when you can. Have a great day.




Congratulations on 5 years!!!   

My best wishes to your son.  My son was on crutches last year and thought they would be so cool till he realized how much it hurt after the first day. I pinned two hand towels to the arm cushions and ordered a couple of gel cushions that fit on them.  

Ang


----------



## angwill

Nora03 said:


> luvmarypoppins - congrats!  What a wonderful day for you.  I don't know your story.  Did you and your ds get your bloodwork results yet?
> 
> I just got home from the doctor's and my results were inconclusive.  While I had decided to have the surgery, and the doctor agreed to do it, he gave me another option of waiting for three months and repeating the US and biopsy.  So, that's what I've decided to do.  I'll try to put it out of my mind for the next few months.
> 
> Off topic - our washing machine died and we had to buy a new one yesterday.  We chose a mid-priced one and with tax, delivery ($70) and we bought an extended warranty - the total is $1100.  Isn't that crazy for an ordinary washing machine, or am I living in the dark ages?
> 
> Besides the washing machine we've had to replace our PVR and had to get car repairs in the last couple of weeks.
> 
> Nora



Nora,

I am sorry for the inconclusive answer that has to be awful not knowing.  

$1100 for a non fancy washing machine does sound like a lot but then again the last time I bought one was 15 years ago and we paid like $350 for it back then.  It sucks when everything seems to fall apart at once.  Our whole 2013 seemed to be that way.

Ang


----------



## mrsklamc

So I typed this all out one morning at 3 AM on my phone while pumping and it didn't 'take.'

So our sweet baby boy arrived on 2/3, 7 lbs, 11 ounces. He seemed to be doing well until he failed his 24 hour screen, and came up to the NICU, so I've pretty much been here since then. He should be ok, just needed some extra time to adjust to the outside world.


----------



## angwill

mrsklamc said:


> So I typed this all out one morning at 3 AM on my phone while pumping and it didn't 'take.'
> 
> So our sweet baby boy arrived on 2/3, 7 lbs, 11 ounces. He seemed to be doing well until he failed his 24 hour screen, and came up to the NICU, so I've pretty much been here since then. He should be ok, just needed some extra time to adjust to the outside world.



That is so wonderful.  Sometimes babies just need some extra care at birth.  I hope he is a happy and healthy little boy and gets to go home soon.


----------



## SingingMom

mrsklamc said:


> So I typed this all out one morning at 3 AM on my phone while pumping and it didn't 'take.'  So our sweet baby boy arrived on 2/3, 7 lbs, 11 ounces. He seemed to be doing well until he failed his 24 hour screen, and came up to the NICU, so I've pretty much been here since then. He should be ok, just needed some extra time to adjust to the outside world.




Blessings to all of you!!

"SingingMom" ....Sent from my iPad using DISBoards


----------



## luvmarypoppins

mrsklamc said:


> So I typed this all out one morning at 3 AM on my phone while pumping and it didn't 'take.'
> 
> So our sweet baby boy arrived on 2/3, 7 lbs, 11 ounces. He seemed to be doing well until he failed his 24 hour screen, and came up to the NICU, so I've pretty much been here since then. He should be ok, just needed some extra time to adjust to the outside world.




Welcome sweet little guy! Blessings to you all!


----------



## luvmarypoppins

Singing Mom - I am wondering how the fast passes  worked with the Swan. I did see the little table set up at the Epcot International Gateway one day. We are thinking of staying there in March and that might influence the decision.

I have a horrid cold and am just miserable. At least its not too much coughing yet. That is the worst with the neck dissection. I feel like my jaw is really bothering me too. 

Getting weary of this snow. Hmm, lucky dh is in sunny Calif. and I am stuck in the house with 3 adult ds. What is wrong with this picture? Between today and tomm. we are getting 6 to 10 inches. sigh. 

Christine - how is your weather. I am reading a book I won from Goodreads right now. Its a mystery/murder. Not gruesome but a funny one. 

Next week I am going to the endo. I am sure she will understand that I didnt get the sono yet due to the weather.


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## Christine

luvmarypoppins said:


> .
> 
> Christine - how is your weather. I am reading a book I won from Goodreads right now. Its a mystery/murder. Not gruesome but a funny one.



Oh, the weather outside is frightful!! We have about 10 inches of snow.  There is a lull right now, but the back end of the storm comes through later and we are supposed to get a few more inches.  

The federal government shut down today.  I am under a telework agreement so I still have to work when that happens but it's still nice not to have to be outside in this!


----------



## SingingMom

luvmarypoppins said:


> Singing Mom - I am wondering how the fast passes  worked with the Swan. I did see the little table set up at the Epcot International Gateway one day. We are thinking of staying there in March and that might influence the decision.  I have a horrid cold and am just miserable. At least its not too much coughing yet. That is the worst with the neck dissection. I feel like my jaw is really bothering me too.  Getting weary of this snow. Hmm, lucky dh is in sunny Calif. and I am stuck in the house with 3 adult ds. What is wrong with this picture? Between today and tomm. we are getting 6 to 10 inches. sigh.  Christine - how is your weather. I am reading a book I won from Goodreads right now. Its a mystery/murder. Not gruesome but a funny one.  Next week I am going to the endo. I am sure she will understand that I didnt get the sono yet due to the weather.





There are FP+ kiosks throughout the parks. You scan your admission ticket and can choose 3 FP at a time. Once the testing period was over in mid-January, you didn't need to show your swan/dolphin  room key.  So far SD guests can not get FP+ in advance of the current day, but there were rumors that might change in the future. 

Tons of snow in NJ. SO tired of this winter!!!

"SingingMom" ....Sent from my iPad using DISBoards


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## luvmarypoppins

Survived my endo visit yest. It was the good, the bad and the ugly.

The good:
Tg is undetectable
I lost 14 lbs. since Aug.
She said I dont have to go to the oncologist anymore - yippee!

The bad:
My tsh shot up from 0.7 to 1.7
She said she wants it close to 0 as possible because if it doesnt get there then there is a good chance the cancer will have an chance to grow back Christine is this right??? She said the cause of this could be my age or my body not processing it correctly??? So she is upping my dose to an extra pill of 150 on sundays and ordered a blood test for 6 weeks. She said if it still does not go down, then its more adjusting and more blood work till it gets right??

Told her I didnt like the new internist and asked her about the female gp my ds went to. She said she heard of her but doesnt know her personally and I should try her. I told her the internist was too preachy and ordered too many tests. I personally dont know if that is her friend but she seems genuinely disappointed that I did not like her. 

Said I need another reclast infusion. Followed by a pre infusion bone scan. She said after 5 years they stop as there is no paper stating the benefit after 5 years etc?

Told her I didnt get the sono due to all the bad weather. Have to get it soon

The ugly:
Electronic prescriptions!!! Does anyone else have these to deal with.
I have 5 meds. They only do electronic to pharmacy now. I never walk out with a a paper script. So I go into the pharmacy after the visit on the way home. They say they dont have the synthroid script but have 2 others. The tech says you can take your old synthroid refill. I said, no I am not taking it because it will have 5 less pills in it for the month. Why should I. My ins. is paying for it etc. they dont know why they dont have that one from the dr. 

So this morning I was on the phone for like 20 mins. with the endo office. They couldnt even find me in the computer system. I had to give them my medical record number finally. Gheesh. The recept. sees a note to the dr. from the nurse and she is questioning the new dose of synthroid. the dr. says yes I want the patient to have it etc. So I have a feeling the nurse somehow had a hand in messing this up. sigh. I have 2 more pills left and will call the pharmacy later today or tomm. morning at the latest etc. Oh and add in that they listed another of my meds as a mome med aka over the counter and the wrong dose too! I said no its a script and you have the wrong dose down (This was on  a patient summary that they give you when you leave. Mine was over 5 pages so I dont have time to actually read it there. However if I did I would have caught that one mistake etc). Rant: give me back my paper scripts, lol!1 I told the recept. I hate these elect. scripts. as the patient sees nothing.

My ds goes to the ortho tomm. I hope he gets a boot or better yet nothing. We shall see. I think he has had it with this too. It wouldnt be so bad if he didnt have to deal with getting around in the snow and ice.

Micayla - how is the new mom and little guy doing??

Singing Mom - leaning toward the Swan for our trip. I know my ds will not be happy with non charging outside the resort itself and I think they will feel like have nots without the magic bands since they saw so many that we had etc. 

Christine - thought of you as my ds said one of the places he went to at his college job fair was the naval offices in Maryland? I think that is a way long reach for him unfortunately. 

Well check in when you can. Hope everyone is doing well.


----------



## luvmarypoppins

Oh and one more thing I forgot to add. When I had the bad cold last week and my jaw hurt so much I did notice a little bump by my check. Its always been there but I thought it was bigger etc. I was thinking of putting a hot compress on it since it hurt alot.

I asked her to feel it yest. It has gone down a lot in size. She feels its a salivary stone, a small one but she says of course its a side effect of the radiation and if it gets bad again she will send me to the surgeon,

I know the surgeon who takes these out only does this surgery. The surgeon who trained him was the one who almost killed me and he is not the one who saved my life. This is another guy. He does it laprascopically I think and its only a 20 min. surgery to remove them. 

Guess I will file that in my nice to know but I am not going there unless its absolutely necessary etc.


----------



## SingingMom

Luvmarypoppins:  focus on the Good and don't dwell on the bad or the ugly. ((Hugs))

I'm with you - i DESPISE electronic Rx and I also HATE mail order pharmacy.  It just makes it so hard for people like us who have chronic illness. 

We never stay at Swan, always at the Dolphin. We like the larger resort and amenities, although both hotels can access all the areas. We like the hustle & bustle of the Dolphin and the proximity to the Cabana Bar and pool area. Charging to the resort would be nice, but the deals for a deluxe property and still enjoying WDW transportation. 

Good luck with the remaining dr appts!

"SingingMom" ....Sent from my iPad using DISBoards


----------



## Christine

luvmarypoppins---Hmmm, no idea why your TSH would have changed so much.  Let's just hope it was a bad batch of pills.  Or it could be that something in your body chemistry changed.  I know that estrogen plays a role in synthesis of T4.  Once when I tried using oral contraceptives, my TSH went from 1.0 to about 8.0.  Once I stopped using them, I was fine.  

Congrats on the weight loss, that's awesome.  Have you been doing anything special to lose weight?

What type of career is your son looking into?  I'm not sure where the Navy offices are in Maryland.  The Navy has so many divisions that we have offices all over the DC/MD/VA area.  I know there is a special intelligence unit over in Suitland, MD.


----------



## angwill

LMP,

Anytime I lost weight my TSH numbers went lower, more hyper and not higher and with gain they went higher so it is weird yours changed the opposite way.  I did have my numbers go really hypo years ago when taking a multivitamin with iron and had to start taking a senior vitamin that didn't have the iron and they went back down.  It had nothing to do with the time I was taking them either.

From what I have read after thyroid cancer they do what your numbers as close to 0/hyper as possible because the higher/hypo they go the more chance there is that cancer will grow.  

What is reclast infusion  followed by a pre infusion bone scan?  Is that thyroid related?

I had problems with perscriptions for years.  The pharmacy always blames the doctor and the doctor always blames the pharmacy.  I have had nurses call in my scripts with the wrong name and wrong scrip just as I have with the electronic ones.  The worst is when they call in only a month at a time when I always request 3 months at a time.  It has taken me 2 weeks to get them to fix fix those issues.  

I do hope you have no more salivary gland issues.


----------



## luvmarypoppins

So how is everyone doing?

Angwill - I have osteoporosis partly from family hx and the endo said partly because my synthroid was so high 200 mg for so long it damages your bones at that dose over a period of time. I know she calculated my fracture score and she said I was within the limits for the infusion. I cant take a pill because of all my regular gi issues and meds. So they do a bone scan to compare how it is helping each year and also I have to have a blood test to check some kidney thing first before the infusion because the infusion could damage your kidneys too. 

More snow here today, not much though, so that is good but they are saying more is possible in the net week. Weary of this. 

I am also having some issues with the ear and jaw. I dont think things are draining right (the salivary issue). I know once the np at the ent surgeon said they try antibiotics to see if it clears up first. I honestly dont want to go to the ent surgeon. I cant stand looking at the guy knowing he almost killed me and since they are all sub specialized he might refer me to one of the other guys but I would have to see him first, sigh. I am hoping this thing gets better but I keep feeling a tugging annoying pain on the side of my L face where the dissection was. Not fun. 

My ds is going for his echo in 2 weeks. The earliest appt. they had. 

Dh is off to califor. again. I have to check the dates on that. 

Finally made the hotel reservations. We are staying at the Swan March 18-20 and then at the Beach Club from March 20-23. Ds 3 said he wants to swim in storm a long bay. I guess this is like a little pre college graduation celebration for the 2 ds. I hope this is right. I am having dh call the airline again. We cashed in all his miles and got vouchers to say both hotels were free. I dont think that is right. I told dh I calculated we should owe around $500 to disney. Well we have a while to straighten it out before we leave. So right now the rooms are free unless they tell us otherwise. The lady on the phone last night from the airline desk said we dont owe anything. Highly doubt that.

Now to make the adrs.

Micayla - we need a mommy and little guy update!

Christine - what are you reading? I am reading another book I won from Goodreads. Its a historical romance. Going pretty slow for me right now. aka kinda boring in parts. 

Check in everyone when you can


----------



## Christine

luvmarypoppins said:


> Christine - what are you reading? I am reading another book I won from Goodreads. Its a historical romance. Going pretty slow for me right now. aka kinda boring in parts.
> 
> Check in everyone when you can



I'm reading The Valley of Amazement by Amy Tan.  Kind of a historical fiction book, which seems to be my thing these days!  It's not too bad.

Not doing too much else.  Just working, working, working.  The snow stuff is making me weary too.  I'm tired of it.  We've had two mornings where we've had snow for the commute.  Each morning it has snowed 2-3 inches during the 6-10AM hours.  Fortunately, I go to work very early and missed most of it but my coworkers have had to bad mornings of gridlock.

Still waiting on Levoxyl.  Due to my insurance, I have to order my meds through CVS and they haven't pushed the distributor for them.  It's kind of aggravating when you hear about people going to various pharmacies and getting it filled.  Oh well.  I've waited 9 months--what's another few weeks.


----------



## mickeymouse108

so glad to find this thread I have not had time to read all the posts yet I will get to that after I post but I would love some advise from others I just had my yearly physical and my doctor found nodules on my thyroid I cant get in to get my ultrasound until next Thursday and I am so scared my doctor just said to get a ultrasound done asap. I have been having problems with a cough that will not go away and I looked on internet about thyroid cancer and cough and nodules are both symptoms.  any info from your own experience's would be greatly appreciated.  very worried right now.


----------



## Christine

mickeymouse108 said:


> so glad to find this thread I have not had time to read all the posts yet I will get to that after I post but I would love some advise from others I just had my yearly physical and my doctor found nodules on my thyroid I cant get in to get my ultrasound until next Thursday and I am so scared my doctor just said to get a ultrasound done asap. I have been having problems with a cough that will not go away and I looked on internet about thyroid cancer and cough and nodules are both symptoms.  any info from your own experience's would be greatly appreciated.  very worried right now.



Please try to relax (I know it's hard).  The statistics are on your side.  Many, many thyroids are lumpy and bumpy.  Multiple nodules are good indicator of thyroid "trouble" versus thyroid "cancer."  

Coughing is not directly a symptom of thyroid cancer like you might think.  It is more a symptom of a nodule or nodules that are big enough to press on your throat and make you cough.  Some people with thyroid cancer that has gotten very large, or benign nodules that have gotten very large, might have difficulty swallowing or feel the need to cough because of the pressure on their throat.  

I never had one symptom when I had thyroid cancer.  Not one.

The ultrasound will give you an idea of how many nodules you have, their size, location, and what they are made up of.  It will not give you a diagnosis, unfortunately.  

Just try to relax and know that the odds are on your side that you just have a misbehaving thyroid gland.


----------



## mickeymouse108

Christine said:


> Please try to relax (I know it's hard).  The statistics are on your side.  Many, many thyroids are lumpy and bumpy.  Multiple nodules are good indicator of thyroid "trouble" versus thyroid "cancer."
> 
> Coughing is not directly a symptom of thyroid cancer like you might think.  It is more a symptom of a nodule or nodules that are big enough to press on your throat and make you cough.  Some people with thyroid cancer that has gotten very large, or benign nodules that have gotten very large, might have difficulty swallowing or feel the need to cough because of the pressure on their throat.
> 
> I never had one symptom when I had thyroid cancer.  Not one.
> 
> The ultrasound will give you an idea of how many nodules you have, their size, location, and what they are made up of.  It will not give you a diagnosis, unfortunately.
> 
> Just try to relax and know that the odds are on your side that you just have a misbehaving thyroid gland.



thank you for your encouraging words its so hard to wait to find out what is going on.


----------



## angwill

I have been on 350mcg since my surgery and my thyroid tests are coming up perfect.  The only think I hate is my hair has fallen out drastically and the texture even changed at the higher dose.  I have been on over 200mcg of levothyroixine for almost 20 years.  My calcium levels and vitamin D have been low forever so I have taken supplements but I have never had a doctor tell me about osteoperosis hapening on higher doses.  I will have to bring it up next week when I see my doctor.  I do hope your tests all come back good.  It has to be exhausting wondering and waiting. 





luvmarypoppins said:


> So how is everyone doing?
> 
> Angwill - I have osteoporosis partly from family hx and the endo said partly because my synthroid was so high 200 mg for so long it damages your bones at that dose over a period of time. I know she calculated my fracture score and she said I was within the limits for the infusion. I cant take a pill because of all my regular gi issues and meds. So they do a bone scan to compare how it is helping each year and also I have to have a blood test to check some kidney thing first before the infusion because the infusion could damage your kidneys too.
> 
> More snow here today, not much though, so that is good but they are saying more is possible in the net week. Weary of this.
> 
> I am also having some issues with the ear and jaw. I dont think things are draining right (the salivary issue). I know once the np at the ent surgeon said they try antibiotics to see if it clears up first. I honestly dont want to go to the ent surgeon. I cant stand looking at the guy knowing he almost killed me and since they are all sub specialized he might refer me to one of the other guys but I would have to see him first, sigh. I am hoping this thing gets better but I keep feeling a tugging annoying pain on the side of my L face where the dissection was. Not fun.
> 
> My ds is going for his echo in 2 weeks. The earliest appt. they had.
> 
> Dh is off to califor. again. I have to check the dates on that.
> 
> Finally made the hotel reservations. We are staying at the Swan March 18-20 and then at the Beach Club from March 20-23. Ds 3 said he wants to swim in storm a long bay. I guess this is like a little pre college graduation celebration for the 2 ds. I hope this is right. I am having dh call the airline again. We cashed in all his miles and got vouchers to say both hotels were free. I dont think that is right. I told dh I calculated we should owe around $500 to disney. Well we have a while to straighten it out before we leave. So right now the rooms are free unless they tell us otherwise. The lady on the phone last night from the airline desk said we dont owe anything. Highly doubt that.
> 
> Now to make the adrs.
> 
> Micayla - we need a mommy and little guy update!
> 
> Christine - what are you reading? I am reading another book I won from Goodreads. Its a historical romance. Going pretty slow for me right now. aka kinda boring in parts.
> 
> Check in everyone when you can


----------



## angwill

mickeymouse108 said:


> so glad to find this thread I have not had time to read all the posts yet I will get to that after I post but I would love some advise from others I just had my yearly physical and my doctor found nodules on my thyroid I cant get in to get my ultrasound until next Thursday and I am so scared my doctor just said to get a ultrasound done asap. I have been having problems with a cough that will not go away and I looked on internet about thyroid cancer and cough and nodules are both symptoms.  any info from your own experience's would be greatly appreciated.  very worried right now.



Waiting on the ultrasound should not make you worry.  I had to wait a couple months and over a month for surgery to remove my thyroid.  It is more mentally dangerous than physically having to wait. IMO  I too had the cough and it was because I had a big nodule that was pressing on my throat.  Less than a week now.  You will be fine.  Try and find pleasant things to occupy yourself with.


----------



## Christine

angwill said:


> I have been on 350mcg since my surgery and my thyroid tests are coming up perfect.  The only think I hate is my hair has fallen out drastically and the texture even changed at the higher dose.  I have been on over 200mcg of levothyroixine for almost 20 years.  My calcium levels and vitamin D have been low forever so I have taken supplements but I have never had a doctor tell me about osteoperosis hapening on higher doses.  I will have to bring it up next week when I see my doctor.  I do hope your tests all come back good.  It has to be exhausting wondering and waiting.



angwill,

I think the osteoporosis only occurs if you are too suppressed and isn't really related to dosage, per se.  So if you are taking 350 mcg but your numbers are perfect, then it should not be a problem. I think it's only a problem with long-term extreme suppression.  Even then, I'm not sure that they really proven that but it could be a factor (hyperthyroidism) in leaching calcium from the bones.

Keeping your Vitamin D levels up and taking in calcium would be a good idea if you are very suppressed.


----------



## mickeymouse108

angwill said:


> Waiting on the ultrasound should not make you worry.  I had to wait a couple months and over a month for surgery to remove my thyroid.  It is more mentally dangerous than physically having to wait. IMO  I too had the cough and it was because I had a big nodule that was pressing on my throat.  Less than a week now.  You will be fine.  Try and find pleasant things to occupy yourself with.



thanks its really assuring to hear from people who have been thru this.


----------



## angwill

Christine said:


> angwill,
> 
> I think the osteoporosis only occurs if you are too suppressed and isn't really related to dosage, per se.  So if you are taking 350 mcg but your numbers are perfect, then it should not be a problem. I think it's only a problem with long-term extreme suppression.  Even then, I'm not sure that they really proven that but it could be a factor (hyperthyroidism) in leaching calcium from the bones.
> 
> Keeping your Vitamin D levels up and taking in calcium would be a good idea if you are very suppressed.



Thanks Christine.  My doctor keeps checking all my TSH levels as well as the calcium, vitamin D, and anything else that comes up.  He said they took out one parathyroid and that regulates the vitamin D which was very low so he had me add that to the calcium I have been taking for years. I have always taken high doses of levothyroxine to keep from becoming hypo it is what works for my body.  I will just make sure my doctor keeps checkign my calcium and vitamin D levels.


----------



## mickeymouse108

had my ultrasound today now just waiting for my doctor to get results and call me.


----------



## luvmarypoppins

mickeymouse - glad the ultrasound is done. I am sure it wont get too long to get the results. Wishing you all the best.

Well I scheduled the reclast infusion for April 2. Now I have to coordinate the blood test and bone scan and sono too. My head spins. Add in the week off for the vacation etc.

Last night I finally made the rest of the adrs. I scored another Be Our Guest dinner the other week at like 2 am again. Hmm, seems to be my magic adr time. We are eating at Chefs, Rose And Crown, Hollywood and Vine (Yuck, my ds wanted this), Cape May (for my ever loving crab legs dh and maybe one of the ds, youngest ds hates seafood. I hope he can survive the smell in there), and BOG. I want to maybe do lunch with just dh at Liberty Tree and maybe Akershus because he is dying for Norwegian food. 

Now also I have to wait and see about ds ortho appt. next week. Oh and he got his blood results back and his vit d is really low, hmm, no surprise there. His echo is wed. and he goes to the ortho on tues. So that day we will see what his weightbearing and activities are. I am thinking about getting him either a wheelchair or a scooter if need be. Because I am sure the other ds will be aggravated with him not keeping up etc. Also I am holding off on buying their tickets because to see if he can do all the water park stuff etc. Add to this my dh will be away next week in Calif. My head spins, lol. 

Micayla - hope all is well with you and your little boy. I miss you posting!

Christine - any word of your med yet? I finished that book and put up a review on good reads. I gave it 4 stars. I think I will be back into another amish fiction until my new book I won from goodreads arrives. 

Check in when you can everyone.


----------



## angwill

mickeymouse,  I always seem to have to call my doctor for test results instead of him calling me so if you get antsy call and ask.  The hospital I used is excellent at getting the results of any test to the doctor within 24 hours here.  Heck I found out I had cancer right after walking in the door after my biopsy.  Good luck and let us know how it goes. 

LMP,
It is my turn for all the tests too.  Got all my bloodwork yesterday and it is time for the 6 month ultrasound, thyrogluoblulin pannel with I-123 whole body scan.  Dr. wants me to take thyrogen but I might have to go through hypohell again instead.  That was the worst part of having cancer for me.  

I finally got healthcare due to the affordable healthcare plan.  Not so affordable after all with a $6000 per person deductible so for cost sake I might not get thyrogen because pharmacies don't take payments. lol

For anyone who has had thyrogen did you have to get it from a pharmacy or did the doctor or hospital supply it?  

I do hope all your tests come back perfect LMP and that your whole family enjoys your trip.  Wish I had one to plan and get my mind off things too.  

Micayla, I hope you are having the time of your life loving your new little boy.  

Ang


----------



## Christine

angwill,

For the Thyrogen, my doctor arranged for it using a special type of pharmacy.  They delivered it directly to the doctor but my prescription benefits of my health insurance paid for it.  Believe it or not, because it fell under my prescription plan, I had a $25 copay.

LMP - Still waiting on Levoxyl.  CVS claims they can't get it.  I finally got mad and called Pfizer directly.  They were disgusted and said they are hearing a lot of it and it's basically lazy pharmacy distributors who won't pick up the phone and ask Pfizer for a "drop shipment."  So the Pfizer rep called my CVS branch and told them what to do.  They said they were going to do it so I will be checking with them on Monday.


----------



## angwill

Christine said:


> angwill,
> 
> For the Thyrogen, my doctor arranged for it using a special type of pharmacy.  They delivered it directly to the doctor but my prescription benefits of my health insurance paid for it.  Believe it or not, because it fell under my prescription plan, I had a $25 copay.
> 
> LMP - Still waiting on Levoxyl.  CVS claims they can't get it.  I finally got mad and called Pfizer directly.  They were disgusted and said they are hearing a lot of it and it's basically lazy pharmacy distributors who won't pick up the phone and ask Pfizer for a "drop shipment."  So the Pfizer rep called my CVS branch and told them what to do.  They said they were going to do it so I will be checking with them on Monday.



Oh wow, here I was thinking the local pharmacy would have it. lol  My plan is $6000 deductible for everything including prescriptions before the copays kick in.  I think I may be SOL but if I reach the $6,000 my next 6 month scan would be this year and might be covered then.  Thanks for the info.  

That is great about the Levoxyl.  I am a caller and checker too and it is amazing how lazy some people can be about doing their own job.  There is no reason CVS couldn't make that call themselves if they want to retain customers either.  

Ang


----------



## luvmarypoppins

ang - My onc. is like the 4th largest thyrogen user in the US or close to that number. She never runs out she says. But I have read on the thy ca website that there are ways to get the thyrogen. I dont think regular pharmacies stock it. Sometimes your dr./clinic is can do a buy and bill to the ins.company, but it seems like you would be responsible for the payment anyway, but they could obtain it for you. I thought I read somewhere that is like $1,300 for the 2 shots. 

I know when I had to get the reclast infusion I called cvs nd they told me they stock no iv solutions etc. So you have to know the system so to speak and I know there are posts on thy ca about how to order it from the middle man supplier etc. As Christine said, it seems like some of the pharmacies are clueless about stuff.

Also I think I will be dealing with this high ins stuff for our ds. He will only be on our ins. for another 2 years. I cant see him getting any good ins for sure. So with all his medical conditions and meds I think I will look into this. Our state has some health program. I am definitly going to buy him the best ins since we already knows his bones break easily etc. 

Well I am glad I did my online research, I saw the one place I was going to get the bone scan tomm. does not do them at that office. They do them at another office. The one I go to is walk in, I dont know if you can do that at the other one. I might call them in the morning and see. If not, I will go to my usual place next week prob. 

Ang - how many clean scans does your dr. want? My onc. said 2 clean scans and that was it for the scanning. Also I had to do the diet again when I had the follow up scan and get the thyrogen shots again too. 

If you have never done thyrogen before, the first time you have them the side effects are usually a bad headache and I felt a little nauseous. I wanted jello and soup but of course couldnt have them since i was on the LID . The 2nd time i had the shots I only had a slight headache and just a little queasiness. 

Wishing yo all the best. I know my one scan had a pretty high number. I think they let you go up to 4? I cant remember the number. But my onc. said something like 4 was her limit of acceptable. She though my high number wad due to a salivary shadow???  My second scan was great she said. I think that was the one year one. I would have to look up those old posts. 

I am dong the vacation countdown for sure. Now my dh says he is going around the world from Aug. 3-17. He has to go to Beijing, then through Moscow to Siberia and St. Petersberg. I feel like he is on the Amazing Race, lol! 

Christine - how did your dd make out with all that room mate mess? Hope it worked out for her.


----------



## Christine

luvmarypoppins said:


> Christine - how did your dd make out with all that room mate mess? Hope it worked out for her.



That mess is still ongoing.  They never got served papers and one of the girls is trying to get her money together.  I guess it's just wait and see now.


----------



## angwill

LMP,

I had no clue how thyrogen was distributed and by assumption I thought pharmacy. You ladies know a lot more than I.  It is sounding like they would just bill me and as long as they take payments I won't have to fear hypohell again.  Bringing it here has eleviated my anxiety over it.  

I am not sure what you know of using the ACA for your son?  Poor kid breaking bones easily.  That has to be hard to watch as a mom.  If you have any questions at all feel free to message me.  I think I have got it as figured out as can be in factual info and not rumor.  

I have learned to call ahead about just about everything.  With a 45 min to an hour drive to get testing done it is worth the call instead of a wasted trip.  I hope it works out for you with the offices and scans.

You know I don't know if my doctor said or I read 5 years of 6 month scans and then 1 per year. That might have been ultrasounds and not WBS though.  I am going to call the office and ask because I read too much and it all gets jumbled in my brain.  I am the one with the hospital with nuclear med guys and doctors that don't believe the low sodium diet is necessary.  I did watch my sodium and the food I was eating but did not sweat it.  I didn't worry about the chicken brine since there is nowhere anywhere near me that sells chicken not in brine and that kind of thing.  To be honest I think that worked best for me because I am someone who would obsess and while in hypohell that would have been awful for me.  

Thanks for the heads up on the thyrogen side effects.  I rarely get headaches but might just take an Aleve before just in case.  The RAI even in small dose makes me very nauseated.  I thought I was going to have a toxic mess and lose the effects of the radiation.  I never had stomach issues till Radiation treatment and my stomach is still seriously messed up since then.  I will take headache and nausea over hypohell anyday.

We never talked scan numbers but I know they were concerned about it showing up in one of my arm pits but someone, probably you, said it could be a ghost shadow so I am not too worried.  He did do a thyroid cancer marker test and gave me the results today and said my antibodies are slightly high at 105 but he said it is nothing to worry about and in a year that should be down but they wouldn't worry till then if it doesn't go down or gets worse.  My calcium is low again too so I will be taking 3 over the counter pills a day now.  Also my T4 was off so I have to cut back on my synthroid and take half the dose one day a week.  

It does sound like your husband is on the amazing race. lol  I hope he gets to enjoy those destinations a bit.  Do you ever travel with him?  How does he not just want to come home and vegitate at home and instead goes to Disney and runs around the parks? lol  

Christine, Roomates are a PITA sometimes and not all are honest people.  I am glad those days are over.  Hope it gets resolved fast for your DD. 

Ang


----------



## luvmarypoppins

mickeymouse - have you gotten your test results back yet? Wishing you all the best.

Well I called today to make the bone scan appt. Thank heavens I called the place I usually go to. I was thinking of going somewhere else. Well she says, oh your ins. co. will only cover every 2 years and that will be in Sept!. Hmm, the dr. told me to get it now etc. I said well what if its medically necessary etc. So now I have to call the endo and see if she def. wants me to get it before the infusion. Oh my head spins.

My neck has been really bothering me lately on the dissection side. The pain goes up the back of my neck to the skull base. I am grumpy etc. 

Also my dh said, hmm the L side of your face looks puffy. O.K. 

At least a week from today we will be in Disney. Hope the weather cooperates.

Ds2 went to the ortho today. His foot is till not healing and now he has gotten a bone stimulator. He said he will crutch around disney? I asked if he wants a scooter or wheelchair. He is in class so I cant get all the details etc. This is not the news I wanted to hear. Not about the vacation stuff per se, just the non healing stuff. I am getting concerned for sure and maybe thinking of a second opinion etc. 

I made a typo before and my dh is actually going on that trip april 4th and now he is taking ds1 with him on the china leg and he will fly back himself (ds). With all this going on, I am not liking this decision. My dh is flying to places too much in the news lately etc. 

Check in when you can.


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## angwill

luvmarypoppins said:


> mickeymouse - have you gotten your test results back yet? Wishing you all the best.
> 
> Well I called today to make the bone scan appt. Thank heavens I called the place I usually go to. I was thinking of going somewhere else. Well she says, oh your ins. co. will only cover every 2 years and that will be in Sept!. Hmm, the dr. told me to get it now etc. I said well what if its medically necessary etc. So now I have to call the endo and see if she def. wants me to get it before the infusion. Oh my head spins.
> 
> My neck has been really bothering me lately on the dissection side. The pain goes up the back of my neck to the skull base. I am grumpy etc.
> 
> Also my dh said, hmm the L side of your face looks puffy. O.K.
> 
> At least a week from today we will be in Disney. Hope the weather cooperates.
> 
> Ds2 went to the ortho today. His foot is till not healing and now he has gotten a bone stimulator. He said he will crutch around disney? I asked if he wants a scooter or wheelchair. He is in class so I cant get all the details etc. This is not the news I wanted to hear. Not about the vacation stuff per se, just the non healing stuff. I am getting concerned for sure and maybe thinking of a second opinion etc.
> 
> I made a typo before and my dh is actually going on that trip april 4th and now he is taking ds1 with him on the china leg and he will fly back himself (ds). With all this going on, I am not liking this decision. My dh is flying to places too much in the news lately etc.
> 
> Check in when you can.



LMP,
So glad to hear you made that call and that they knew enough to know how your insurance pays.  I hope the test can wait.  

I hope you doctor can get to the bottom of your pain.  Oddly, I noticed the other day I had what felt like two swollen lumps on my neck just below the back of my ear.  They aren't swollen anymore but I did wonder if it is from the RAI.  No pain with mine thankfully.  I hate hearing your in that much pain and hope it goes away fast before your trip.

Your poor son I bet it is harder watching him go through what he goes through than it is what you go through with your health issues.  I bet he would enjoy himself so much more with a scooter.  I don't think anyone could handle a day in Disney on crutches.  

I hope all goes well with DS1 going with DH but I am sure your DH will keep a close eye on him.  

Enjoy your trip.


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## mickeymouse108

angwill said:


> LMP,
> So glad to hear you made that call and that they knew enough to know how your insurance pays.  I hope the test can wait.
> 
> I hope you doctor can get to the bottom of your pain.  Oddly, I noticed the other day I had what felt like two swollen lumps on my neck just below the back of my ear.  They aren't swollen anymore but I did wonder if it is from the RAI.  No pain with mine thankfully.  I hate hearing your in that much pain and hope it goes away fast before your trip.
> 
> Your poor son I bet it is harder watching him go through what he goes through than it is what you go through with your health issues.  I bet he would enjoy himself so much more with a scooter.  I don't think anyone could handle a day in Disney on crutches.
> 
> I hope all goes well with DS1 going with DH but I am sure your DH will keep a close eye on him.
> 
> Enjoy your trip.



I finally got my results on Monday I had to wait all weekend.  it was so hard waiting I ended up having to call my doctor she had Friday off that is why she did not call me it is ok for now,  they found several nodules but all are very small too small to biopsy and all are normal shape my thyroid is normal size so for now looks benign but we will keep an eye on it.  so happy about this I asked about blood work and she had done some on physical. the  blood work  shows my thyroid fine.  but having read about how some blood work is not the right test if you have any advise on what to ask for I would appreciate it.

  sorry it took so long to post it has been very busy here my older daughter was home from college I only see her only on breaks because she is too far away to come home otherwise.  and over the weekend I was waiting for results we were in Vermont visiting my husbands parents so my daughters could see them my father in law has been told he has less than a year to live so we have been making the three and a half hour trip once a month to see him.  he has mylo dysplasia and at 77 years old they do not do the only thing that could make him better a bone marrow transplant because they say too old so he gets blood transfusions every week just to keep him alive along with chemo that is really not helping much its not cancer so chemo really is only supposed to make it so he needs less transfusions but he ends up going at least once a week for one sometimes two if he stops getting them he would die in a couple of weeks.  

well I hope everyone is doing well and thanks for your support.


----------



## angwill

mickeymouse108 said:


> I finally got my results on Monday I had to wait all weekend.  it was so hard waiting I ended up having to call my doctor she had Friday off that is why she did not call me it is ok for now,  they found several nodules but all are very small too small to biopsy and all are normal shape my thyroid is normal size so for now looks benign but we will keep an eye on it.  so happy about this I asked about blood work and she had done some on physical. the  blood work  shows my thyroid fine.  but having read about how some blood work is not the right test if you have any advise on what to ask for I would appreciate it.
> 
> sorry it took so long to post it has been very busy here my older daughter was home from college I only see her only on breaks because she is too far away to come home otherwise.  and over the weekend I was waiting for results we were in Vermont visiting my husbands parents so my daughters could see them my father in law has been told he has less than a year to live so we have been making the three and a half hour trip once a month to see him.  he has mylo dysplasia and at 77 years old they do not do the only thing that could make him better a bone marrow transplant because they say too old so he gets blood transfusions every week just to keep him alive along with chemo that is really not helping much its not cancer so chemo really is only supposed to make it so he needs less transfusions but he ends up going at least once a week for one sometimes two if he stops getting them he would die in a couple of weeks.
> 
> well I hope everyone is doing well and thanks for your support.



That is wonderful news.  So glad it worked out in your favor. I have read in more than one place that multiple nodules seem to be benign more often than one large one like I had.  

They will most likely just want to check your TSH level for thyroid issues but there is also a T3, T3-free, and T4 that they do less often and usually when you have thyroid issues.  I am sure others will have suggestions.

So sad to hear about your FIL.  It has to really suck to fight for extra time all the while getting Chemo and feeling like crap during that extra time.  Poor guy.  I suppose your visits keep it worth the fight though.  

Ang


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## angwill

A little update on my 6 month checks.  I am almost 2 weeks out from when the doctor sent me for my tests.  I was waiting to find out if my new insurance would cover the thyrogen shot so I don't have to suffer through hypohell and the adjusting back to meds.  I got a call on Friday that they will cover them after my $6000 deductible and I said well since they cost $2400 for a kit of 4 shots and I only need two then $1200 won't be covered.  I had called the company about the price and where I could get them.  I was told oh no they are not $1200 they are $10,000 for the two shots.  I thought she was joking but that must be their mark up.  No wonder why health insurance is so outrageous.  When I had no insurance last year because I was deemed uninsurable and couldn't get any I should have figured out the mark up.  I would get bills from the hospital for my labs for $2000 but because I didn't have insurance they would send the bill to the lab to charge me and I would end up with a bill for $100 instead of $2000.  Now I know why.  So now that I have insurance I no longer get the regular price I get the 10-20 times inflated insurance price.  Well with a $6000 deductible for a $600 per month policy I now know I was better off without insurance.  They said they will no longer see anyone without cash up front if they don't have any insurance as of 1/1/13.  Boy they are going to make out like bandits.  Oh I did find a cancer charity willing to help with $1500 toward the thyrogen shots based on income but the hospital said they will not allow me to buy my own shots due to the possiblity of tampering.  I said then I will give myself the shots they are only intermuscular.  I was told they won't scan me if I do that.  What a racket.  So now I am not sure what I am going to do.  Friday with that phone call was the first time I really broke down through all this thyroid cancer stuff.  

Ang


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## Christine

angwill said:


> A little update on my 6 month checks.  I am almost 2 weeks out from when the doctor sent me for my tests.  I was waiting to find out if my new insurance would cover the thyrogen shot so I don't have to suffer through hypohell and the adjusting back to meds.  I got a call on Friday that they will cover them after my $6000 deductible and I said well since they cost $2400 for a kit of 4 shots and I only need two then $1200 won't be covered.  I had called the company about the price and where I could get them.  I was told oh no they are not $1200 they are $10,000 for the two shots.  I thought she was joking but that must be their mark up.  No wonder why health insurance is so outrageous.  When I had no insurance last year because I was deemed uninsurable and couldn't get any I should have figured out the mark up.  I would get bills from the hospital for my labs for $2000 but because I didn't have insurance they would send the bill to the lab to charge me and I would end up with a bill for $100 instead of $2000.  Now I know why.  So now that I have insurance I no longer get the regular price I get the 10-20 times inflated insurance price.  Well with a $6000 deductible for a $600 per month policy I now know I was better off without insurance.  They said they will no longer see anyone without cash up front if they don't have any insurance as of 1/1/13.  Boy they are going to make out like bandits.  Oh I did find a cancer charity willing to help with $1500 toward the thyrogen shots based on income but the hospital said they will not allow me to buy my own shots due to the possiblity of tampering.  I said then I will give myself the shots they are only intermuscular.  I was told they won't scan me if I do that.  What a racket.  So now I am not sure what I am going to do.  Friday with that phone call was the first time I really broke down through all this thyroid cancer stuff.
> 
> Ang



That just doesn't seem right.  I have insurance.  When I got the thyrogen shots, I did see the "real" price which seemed to be around $1300.  I then saw my copay of $25.00 broken out.  So, even though I had insurance, I never got some sort of upcharge on it.  But, it's been many years since I had it so who knows what could have happened.

My suggestion would be for you to work very closely with your doctor and try the "hypo hell."  When I did it, I had some barbaric physician who insisted on the 6 weeks and my TSH got to 148.  When I got a new doctor and he saw that I was a "fast" riser, he let me go at 4 weeks.  Your TSH does not need to be sky high and you miserable.  Many nuclear physicians will accept a level of 40 and some are at 70.  While that seems high, those levels are manageable, especially if you can get your doctor to give you Cytomel for a week or so.


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## luvmarypoppins

mickeymouse - so happy to hear your good news! Congrats!

ang - can you buy and bill from the hosp. pharmacy? I dont know what their cost versus markup would be. Hopefully they would charge you cost. Sorry they wont let you obtain the med yourself. But glad you found the cancer place that is willing to help you. I am sure it is so frstrating when you want to concentrate on your health. My endo says stress is not good for this cancer.

Well speaking of stress... Can I just say again I hate, hate, hate electronic prescriptions.  So of course I am getting ready for my trip. Need a bp med refill. Call the pharm because I am sure the endo ordered it from my last visit. He looks this morning and says, um, no not that one for you. . So he says he is faxing the dr. today. I should call them tomm.  morning asap if I need it by tomm night. So I will call and then leave that message about the bone scan too. I need this right now like a hole in the head. If it doesnt work out I will miss a pill on saturday and be back on sunday and have my oldest ds pick it up before we get home. 

I think the lesson I have learned from all of this is the next time I have an endo visit I will just not say I need the refills and she will type away. I will name them and ask about each one etc and do the final count etc. 

I was going to pack but I took a nap instead. I was so stressed out from a meeting I had this week and the issues that are gong along with it. Worse, I had to write up the minutes for the secretary and it got me more stressed by what I had  to write, sigh. 

It will rain when we arrive in FL on tues. but it will be nice the rest of the week. I want to get in some swimming time for sure. 

I will be packing. At least it wont be a lot so that is good.

Christine - I am now reading a historical fiction about WWI. Won it from goodreads and got an e mail that I won 2 more books too, yay.

Check in when you can.


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## angwill

Christine said:


> That just doesn't seem right.  I have insurance.  When I got the thyrogen shots, I did see the "real" price which seemed to be around $1300.  I then saw my copay of $25.00 broken out.  So, even though I had insurance, I never got some sort of upcharge on it.  But, it's been many years since I had it so who knows what could have happened.
> 
> My suggestion would be for you to work very closely with your doctor and try the "hypo hell."  When I did it, I had some barbaric physician who insisted on the 6 weeks and my TSH got to 148.  When I got a new doctor and he saw that I was a "fast" riser, he let me go at 4 weeks.  Your TSH does not need to be sky high and you miserable.  Many nuclear physicians will accept a level of 40 and some are at 70.  While that seems high, those levels are manageable, especially if you can get your doctor to give you Cytomel for a week or so.



The only reason I know the real prices vs what the hospital bills insurance and me is because last year I had no insurance and negotiated the prices.  So I would get their bill and then call them and would then recieve a bill from the lab company, or some other outside career depending on what they were billing for that was always 10 times less than the hospital originally billed me.

Then with the thyrogen I had researched the cost online as well as calling genzyme the mfg and getting it right from them after the hospital told me I was wrong and I can not believe people on the internet.  I even went to needy meds and priced it through Good RX to double check the price.  The cancer center pharmacist told the nurse who called me that they charge $10,000 and while researching there are others who's insurance is being billed anywhere from $7,000-$15,000.  I wonder if your insurance is one of those that negotiates prices at a reasonable and customary price and mine doesn't bother figuring with a $6000 deductible we won't ever use it?  

If I remember correctly my dr tested my TSH 2 weeks post surgery and I was already in the upper 70's or 80's and miserable as all hell.  I set up my RAI and scans at that time and that was about 4 weeks post surgery.  So even not going the 6 weeks I felt awful.  I also started getting really awful muscle and abdominal cramping and really painful joint pain especially in my shoulders. My husband and son refused to even pick up after themselves and just didn't get it which didn't help.  I will ask about the Cytomel if I don't go with the thyrogen.


----------



## angwill

luvmarypoppins said:


> mickeymouse - so happy to hear your good news! Congrats!
> 
> ang - can you buy and bill from the hosp. pharmacy? I dont know what their cost versus markup would be. Hopefully they would charge you cost. Sorry they wont let you obtain the med yourself. But glad you found the cancer place that is willing to help you. I am sure it is so frstrating when you want to concentrate on your health. My endo says stress is not good for this cancer.
> 
> Well speaking of stress... Can I just say again I hate, hate, hate electronic prescriptions.  So of course I am getting ready for my trip. Need a bp med refill. Call the pharm because I am sure the endo ordered it from my last visit. He looks this morning and says, um, no not that one for you. . So he says he is faxing the dr. today. I should call them tomm.  morning asap if I need it by tomm night. So I will call and then leave that message about the bone scan too. I need this right now like a hole in the head. If it doesnt work out I will miss a pill on saturday and be back on sunday and have my oldest ds pick it up before we get home.
> 
> I think the lesson I have learned from all of this is the next time I have an endo visit I will just not say I need the refills and she will type away. I will name them and ask about each one etc and do the final count etc.
> 
> I was going to pack but I took a nap instead. I was so stressed out from a meeting I had this week and the issues that are gong along with it. Worse, I had to write up the minutes for the secretary and it got me more stressed by what I had  to write, sigh.
> 
> It will rain when we arrive in FL on tues. but it will be nice the rest of the week. I want to get in some swimming time for sure.
> 
> I will be packing. At least it wont be a lot so that is good.
> 
> Christine - I am now reading a historical fiction about WWI. Won it from goodreads and got an e mail that I won 2 more books too, yay.
> 
> Check in when you can.



I don't know what buying and billing from the pharmacy is but the nurse at the cancer center that I talked to did say she was going to go to the pharmacist herself and see if there are any alternate ways for me to get the meds at a lower cost.  The billing department told me there was no way.  I am calling in for the costs of all my tests, shots everything tomorrow morning.  I have a pretty good idea that I will be way over $6000 with what I need done like it or not.  I was told they no longer negotiate lower bills like they did with me last year because everyone is expected to have insurance as of the 1st of the year with the ACA.  If I didn't have insurance they wouldn't even schedule me for anything there.  I will let you know when I talk to them again this week if anything changes.  I know some people who figure they pay less negotiating their bills and paying out of pocket for medical care are going to be in trouble this year if they need care.  Then again maybe not all hospitals work the same way?  Mine is a not for profit though so I doubt it since NFP are usually more accomodating.  

As for stress between my health, insurance and my son is going through a bad phase right now my stess is through the roof.  I wonder if I would even survive hypohell with where I am on the stress scale right now?  Can I come with you to Florida? lol  

I am sorry you are going through so much stress right now.  I hate when they get my scripts wrong too and what a PITA calling and trying to get ahold of someone before you run out.  I always try and get it done about a month ahead of when I run out so I always have extra just in case.  It does help to ask for the meds and then ask if they can take a minute to go over them with you to make sure they ordered the right things.  I hope it all goes well and you get that script tomorrow.  Then I hope you get the sun and fun in at WDW so you are nice and stress free fast.


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## luvmarypoppins

Hi from the Beach club and so nice and warm sunny florida!

Tomm. is our last full day. We have been having a good time. Of course I am interested i the food. So far we ate ate Chefs, Rose and Crown (scored a great illuminations table - my ds loved it!, then Hollywood and Vine - surprisingly it was pretty good and tonight Cape May for my dh crab coma and the ds went crab crazy too. So far we swam in storm along bay once. My ds is getting around with his walking boot but said his ankle hurts. He got to see one of his friends from high school who is in college program. 

We saw the new magic kingdom parade. It was cute. Tomm. we are eating at Be Our Guest again. I want to look at the flower and garden show more. Of course when you are in Disney you never have enough time to see everything of course.

Also before I left I had to resort to faxing a letter to the endo about my med and that bone scan because no one bothered to call me back etc.

Well the endo herself called me on my cell and lelft a message. She got me the script and she told me to wait for the bone scan until sept. for when my ins. will cover it etc. How sweet of her. Gosh  l love that dr. she actually treats you like a real human being!


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## luvmarypoppins

ang - any thyrogen updates for us? Hope you were able to get it.

Well the vacation is over. We went from 80 degrees to about 40. Now we are having snow here tonight. Of course we all want to be back in Fl. We got to swim in storm along bay again. I have learned not to take ds2 on vacation with us again. He is just so moody and uncooperative. I wonder about ds3 too. He was always pushing to do so much and I cant keep up with all of that. We walked from the Swan to Epcot. That is a lot of walking for me all at once. Thank goodness I had the whelchair to hold onto etc.

Today I got the blood test because the infusion is next week. The endo wrote on the blood test script. Get in early April. So the tech says, well I cant do this test until early April.  I have to honor what is written etc. I said, its just a note she wrote on there to remind me etc. Geesh. She did let me have the test. Nice as my endo wrote notes on all my other stuff too, like do in 6 months etc. Ds told me to say I wrote it the next time. There are no signatures just a printed handwritten notation. 

Now to schedule the sono. I am really behind with that one. 

Hope everyone is doing well. Check in when you can.

I forgot to book a bounceback when we were there. Oh well, since my dh is going around the world next week I know we will have lots of more miles adding up. I will use them for the Swan if we can get a room next time. Its a better bargain and uses less miles than the beach club for sure. We dont use the magical express and we dont care about the magic band stuff either. Also by then, probably december or food and wine time, ds3 will have his nursing license, so I know they give discounts for that so I will look into that too Only problem is that is when the baseball winter meetings are if they decide to have them there again. So rooms might be hard to come by etc.


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## luvmarypoppins

Well I have another slight cold,cough,congestion. Not as bad as last time yet, but I have a pain in the back of my throat. At least it really isint hurting by the dissection like it was last time for now.

Ds 2 ortho asked him to get an xray before he went for his visit on wed because there xray machine would be down. So he went today and brought home the xrays. We looked at them and sure enough the bone is still broken and not healed. I dont know what the dr. is going to do. Ds said he did mention surgery. Oh and today ds decides to go put his bone stimulator machine back . sigh. Then I asked him if he called about his echo results and he said no. I wish he would be a little more responsible with his health care. I am going to go with the no news is good news right now since we havent heard from the dr. by phone or letter at present.

Wed. I am getting my infusion and then next  sat. my dh is leaving for his 17 day trip to china and russia. Ds1 is going with him for the china leg. 

Check in when you can. Hope everyone is doing well.


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## Christine

luvmarypoppins--sorry to hear about your cold.  I've been "lucky" this year.  I mainly don't catch anything because I don't do much!  Work, sleep, clean the house.  I'm just not around a lot of people.  My coworkers, though, seem to get hit with everything, but they are fairly social and are amongst crowds all the time so, there you go.  I think maybe you're having too much fun!

I know it has got to be stressful about your son.  I remember last year when my son broke his finger.  It was a complex break at the fingertip (very weird) and the bone was totally severed.  I was really getting panicky because the darn thing would just not seem to bond together.  We were at the ortho every 3 weeks for an x-ray and it was getting to the point that I could see the alarm int he doctor's eyes.  But *finally* we got something.  That bone took about 8 months to finally resolve. 

I've been doing okay.  I have been on Levoxyl for a full two weeks now.  I do think that my anxiety levels have come down a notch.  They are still there but a bit more manageable.  The good thing is that now that I am back on my usual thyroid medication, I have a good idea of what is medication related and what is just due to some sort of PTSD.  I am still having issues with that oddly enough.  I am unable to drive on the highways since the shooting and I have problems in meetings at work with focused groups.    The whole thing is really quite baffling to me but now that I've got the thyroid stuff sorted out, I feel like I can pursue the other issues without some nagging doubt in my mind that the medications are causing issues.

My DD graduates college in May so I will have her back home on a more permanent basis.  My son will be home too during the summer break so it's going to be an interesting summer.

They all want to go to Disney but I think I'm going to put it off until next year (maybe when my son turns 21 in December 2015).  We've never been in December so I'd like to try that.


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## SingingMom

Sorry to hear you haven't been feeling well & your son is having such problems. So hard to watch your child have health problems. 

DD20 has been complaining of knee pain, so took her to internist yesterday. She is an equestrian and works out three times a week. She did a lot of stairs last semester in London.  Doctor diagnosed her with patellofemoral pain syndrome and prescribed an anti-inflammatory and 8 weeks of PT. No workouts or riding for two weeks, but she can show next week.  Never a dull moment!

Deciding on which ABD to take this summer. If summer ever comes.....

"SingingMom" ....Sent from my iPad using DISBoards


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## angwill

Hello,

LMP, I did find a way to get the Thyrogen but could not get the hospital to allow me to get it for the real price and not their inflated $10,000.  It makes me sick the makup on such an important cancer drug.  I always thought it was the drug companies marking thing up to high. lol  I will be getting the Thyrogen and scans the second week of April so in just over a week from now.  

I did get the ultrasound and she said she can see no tissue at all so that is all clear.  

Sorry to hear about your son and his leg.  I hope he can start healing that bone soon.  Also about your getting sick.  Do you think it's from Disney?  Lots of germs from all over the world there. 

Your trip sounded like lots of fun.  Maybe next time let your son and whoever else wants to walk to Epcot walk and you just wait for the boat and meet them there.  

Christine,  Oh my goodness that shooting caused some scary PTSD issues for you.  I am sorry to hear that.  I hope you can get some therapy now that you are back on your meds and know what is the PTSD and what is not.  

How does the Levoxyl make you feel different than just levothyroxine or synthroid?  I am curious because I am 8 months post TT and just don't feel like myself quit yet.  

Sounds like you will have a fun summer with the kids back home.  Maybe that will help some with the PTSD?

Singing Mom,  We are waiting for spring still here in IL too.  Hope you DD knee gets better.  I need to take my son in for his too because he keeps complaining about his one knee hurting.  

Ang


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## luvmarypoppins

Christine - glad you got the med but sorry for the other sssues you are having

ang - glad you got the thyrogen even though its so expensive. I am sure we will face that once our ds gets that health ins. We have 2 years for that. I hope you scan goes well I know you you will see a big different with thyrogen versus hypo. Just the headaches and nausea for side effects.

Singing Mom - hmm, I would pick Norway, but then I have been there so I am biased.

Well I cancelled my infusion for tomm. and went to the urgent care today. I couldnt take my sinus pain anymore. The dr. gave me an antibiotic She also said my ear is red. That is really bugging me and says I sound a little congested too. At least my jaw is not hurting like the last time. 

Hope everyone is doing well. Check in when you can.


----------



## angwill

Glad to hear you got an antibiotic for your sinus issues.  Hopefully you can get your infusion soon and all goes well.  

Can't your son just stay on your plan till he turns 26 or is he turning 26?  It is odd that they said the new healthcare makes it so your kids can stay on the plan till they are 26 but my son who is 19 couldn't on my plan I got through the ACA.  From what I was offered through the website the lowest deductible was $2500 but it cost more per year than the difference between the $2500 deductible and my $6000 deductible, go figure.  Just make sure you figure out the difference between the cost of the plans and their deductibles.  You might be better off with the high deductible and banking the difference in the plans.  



luvmarypoppins said:


> Christine - glad you got the med but sorry for the other sssues you are having
> 
> ang - glad you got the thyrogen even though its so expensive. I am sure we will face that once our ds gets that health ins. We have 2 years for that. I hope you scan goes well I know you you will see a big different with thyrogen versus hypo. Just the headaches and nausea for side effects.
> 
> Singing Mom - hmm, I would pick Norway, but then I have been there so I am biased.
> 
> Well I cancelled my infusion for tomm. and went to the urgent care today. I couldnt take my sinus pain anymore. The dr. gave me an antibiotic She also said my ear is red. That is really bugging me and says I sound a little congested too. At least my jaw is not hurting like the last time.
> 
> Hope everyone is doing well. Check in when you can.


----------



## luvmarypoppins

Oh happy day! The endo just sent me a letter and said my tsh went from 1.7 to 0.3, so I guess the extra pill on sundays is working. 

And more happy..since our wonderful President has decided to sanction Russia, guess who's dh is not going to Russia, yippee! He is coming back a week early and only going to China. Ds1 is coming back 2 days before him. 

ang - my ds is 24, he has 2 more years, so I am just preparing since he has so many medical issues, will eventually need a cornea transplant, asthma, the bone stuff etc.


----------



## angwill

luvmarypoppins said:


> Oh happy day! The endo just sent me a letter and said my tsh went from 1.7 to 0.3, so I guess the extra pill on sundays is working.
> 
> And more happy..since our wonderful President has decided to sanction Russia, guess who's dh is not going to Russia, yippee! He is coming back a week early and only going to China. Ds1 is coming back 2 days before him.
> 
> ang - my ds is 24, he has 2 more years, so I am just preparing since he has so many medical issues, will eventually need a cornea transplant, asthma, the bone stuff etc.



That is great news.  Funny that mine was just 0.3 and he took away 175mcg one day to get the number up a bit. lol  He was afraid i would end up hypo soon if he didn't.  I do hope you get yours to settle where it is.  

Glad to hear about your husband being able to be hoem safe with you and your children.  

I don't know how you handle having to worry about your son like you do. No human especially our children should have to know all those things are inevitable.  I do hope they fix more of the health care issues before you have to worry about his insurance. 

Ang


----------



## Nora03

Hi All,
Haven't been on here for awhile as I decided I was just going to hide my head in the sand for awhile and not think about my thryoid.    Please wish me luck tomorrow.  I'm going for another ultrasound and fine needle biopsy.

Nora


----------



## angwill

Good luck to you Nora.  May your untrasound and FN biopsy come out with the best results.  

I got my first $5000 thyrogen shot today and the second $5000 thyrogen shot tomorrow.  So far I feel no side effects.  No head ache or nausea.  I figured I would be nausiated since I was assured with the RAI both scan an therapy dose would not make me nausiated and I was so nauseated I was sure there would be toxic waste in my garbage can.  

Ang


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## SingingMom

Nora03 said:


> Hi All, Haven't been on here for awhile as I decided I was just going to hide my head in the sand for awhile and not think about my thryoid.    Please wish me luck tomorrow.  I'm going for another ultrasound and fine needle biopsy.  Nora



By this time tomorrow it will be done!  .  Good luck!

"SingingMom" ....Sent from my iPad using DISBoards


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## luvmarypoppins

Nora - hoping the fna went well for you. Now I know the hardest part is waiting for the results

ang - how was your second thyrogen shot today? That is great that you didnt get the nausea or head ache. How do you like this compared to going the hypo route?

Well I got ds2 sick with my germs. He is on an antibiotic too. I hurt my back. Dont know how. Its only one muscle in a certain part. I went to the er once for this but this pain is bearable , when I went it was not.  am taking it easy for sure and resting. 

Ds2 went to the ortho today and he said the bone is healing but still wants him to wear the boot.

Ds1 is coming home frm China tomm. I guess I will get an update on dh from him since they have blocked their calls out as usual and I havent heard from him at all except one text. 

Thinking of you all. Check in when you can.


----------



## Christine

Hi everyone!  Just checking in.  It's been one of those "doctor" weeks for me.

Last week I had my annual well woman exam and my GYN reminded me that I still have a cervical polyp and that he'd like to remove it now (he didn't care about it last year).  So that was scheduled for April 9th and was supposed to be not a big deal.  

I then had my annual mammogram this past Saturday. Always fun.

I noticed last week that I, without even trying, lost about 3 lbs.  All of a sudden my pants were a bit looser.  I figured it was time for a thyroid panel check as I had been on the Levoxyl for about 4 weeks.  Sure enough, those results came back and my TSH went from 0.77 to 0.4 and my T4 went from 1.43 to 1.85.  He asked me "how do you feel?"  I told him I had lost weight without trying and I still have anxiety that seemed to have picked up.  So, I've cut my dose by 1/2 tablet a week.  We shall see.

The cervical polyp thing was not all that fun.  Not horrific but definitely not fun.  It was done in the office, fortunately, but was uncomfortable.  It has a 99.9% chance of being perfectly normal but I still will be antsy about that pathology.

The mammogram was normal!

So I think I am done for awhile, but darn, medical visits really make me tense.


----------



## angwill

Great news for me.  My thyrogen marker and WBS were normal.  The nuc med department said they saw very little thyroid tissue but they said that after surgery too.  So six more months and then another round of thyrogen (if insurance will cover it twice in a year) and then another WBS and ultrasound.  Deductible will be met by then so no biggie.  

Does anyone elses endocrinologist want an appointment with them every 3 months?  I am going to talk with him because I come in and he says nothing except to go get labs, or whatever scan and then charges me $165, not to mention the 45 minute drive for something his nurse can call and tell me to get done. lol 

I was also reading that the bigger hospitals like Sloan Kettering are doing away with thyrogen and WBS after surgery.  They are relying on the tumor marker and ultrasound results and if those are good skipping the WBS.  I want to talk to my doctor about that too.  It just seems to make more sense.  Why subject yourself to thyrogen and low dose radiation and scan if not necessary.  

Christine,  Glad you got the lady tests done and over with.  The cervical polyp doesn't sound like an easy thing at all.  I had one years ago but thankfully it dissapeared.  

Like you I had been losing weight over the last few months and loving it but when I got my labs and saw the doctor he decreased my dose for one day to get my numbers up a little bit. The weight loss stopped too.  Bummer.

LMP,  Your going to think I am nuts but for some odd reason my second day on thyrogen I felt better than I have since I was in my 20's before all the thyroid stuff.  I had energy and felt good.  No side effects at all from the thyrogen.  

Sorry to hear your DS2 is sick but glad his leg is healing, that is great news.  I hope your back is feeling better now.  How was DS1 homecoming?  

Nora,  Any word on the FNA biopsy?  How did it go?  When I was getting my scan I saw a woman coming out from her FNA biopsy on her thyroid and thought of you.


----------



## Christine

angwill said:


> Does anyone elses endocrinologist want an appointment with them every 3 months?  I am going to talk with him because I come in and he says nothing except to go get labs, or whatever scan and then charges me $165, not to mention the 45 minute drive for something his nurse can call and tell me to get done. lol



During the early days after my diagnosis, I too was going every 3 months.  They ran labs and doctor was very specific in wanting to know how I felt, plus he was doing manual neck exams.

When things stabilized, I dropped to three times a year.  Finally I was going every 6 months and if I ever felt "off" I could call in for a lab order.

My doctor then retired and I started with a new guy.  He is much more hands off (and by the time I got with him, I had hit my 15 year anniversary).  We started off with 2 times a year.  Then, since I was feeling SO good, he only had me come in once a year.  That was nice, but odd.  Since this last year has been so bad for me with the change in meds and all the stuff in my life, I have seen him 3 times in the last year and have had several lab draws.  I seem to be back on my 6 month schedule.

For me, I no longer do Thyrogen because of side effects so it's just Tg labs and ultrasound.


----------



## SingingMom

Early on in my diagnosis I also was every 3 months, then 6 months, then annually. When I changed practices, my new endo wanted to see me 6 months, just to get to know me better. Lol. Now we are yearly, but she has me going for ultrasound of the thyroid bed every other year.     Getting ready for my  yearly doctor parade. Lol. Internist in two weeks, gyno in two months, cardiologist and endo after that. In the mean time, I have to have a dental implant. Trying to decide when I want to fit that in with summer vacation etc.   

DD is in the middle of her PT. Apparently early years of walking on her toes caused certain muscles to put extra pressure on her knee caps. Figure skating and equestrian riding/jumping and the workouts involved exasperated this. The mega walking she did in London put her over the edge pain wise.  Therapist feels she can "teach" the other muscles in her legs to do their proper job.   She's off to the junior/senior ball tonight. She'll be starting her senior year of college in Sept. Where do the years go????  "SingingMom" ....Sent from my iPad using DISBoards


----------



## angwill

Christine said:


> During the early days after my diagnosis, I too was going every 3 months.  They ran labs and doctor was very specific in wanting to know how I felt, plus he was doing manual neck exams.
> 
> When things stabilized, I dropped to three times a year.  Finally I was going every 6 months and if I ever felt "off" I could call in for a lab order.
> 
> My doctor then retired and I started with a new guy.  He is much more hands off (and by the time I got with him, I had hit my 15 year anniversary).  We started off with 2 times a year.  Then, since I was feeling SO good, he only had me come in once a year.  That was nice, but odd.  Since this last year has been so bad for me with the change in meds and all the stuff in my life, I have seen him 3 times in the last year and have had several lab draws.  I seem to be back on my 6 month schedule.
> 
> For me, I no longer do Thyrogen because of side effects so it's just Tg labs and ultrasound.



My endo has never felt my neck nor does he ever ask how I am feeling. lol  When I tell him how I am feeling he tells me to see my GP about it. Seriously, I told him I have had abdominal issues since the radiation therapy and joint pain and cramping since surgery and he told me it is not thyroid related to go see my GP.  I told him I was losing my hair really bad and he did a ferritin test and said there was nothing I could do about it.  If I say nothing he simply comes in and tells me to go get labs or whatever and that is it. lol  If there were another endo less than 2 hours away I would switch. Want to switch endos? lol


----------



## Christine

angwill said:


> My endo has never felt my neck nor does he ever ask how I am feeling. lol  When I tell him how I am feeling he tells me to see my GP about it. Seriously, I told him I have had abdominal issues since the radiation therapy and joint pain and cramping since surgery and he told me it is not thyroid related to go see my GP.  I told him I was losing my hair really bad and he did a ferritin test and said there was nothing I could do about it.  If I say nothing he simply comes in and tells me to go get labs or whatever and that is it. lol  If there were another endo less than 2 hours away I would switch. Want to switch endos? lol



That sounds pretty awful.  Do you have a good primary care doctor that would manage your thyroid issues?


----------



## angwill

Christine said:


> That sounds pretty awful.  Do you have a good primary care doctor that would manage your thyroid issues?



Since the only reason I have to go to a primary care doctor is for my thyroid I have not been able to find a good one for several years.  They either move on or are not great.  There is a female doctor that is in our area one afternoon every two weeks I saw one time to get orders for the FNA biopsy and I really liked her. The doctor I had been seeing told me I had cancer before biopsy and then wanted me to supress and do a WBS before the biopsy that would have wasted months so I found the new doctor.  I think I might try going back to her after my year check up.  She was awsome.  I just don't like the limited hours in our area.  We will see how it goes.  Maybe I can set up a physical with her and talk to her then.  

Great idea, thanks.


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## TwizzleMouse

Hi. I was diagnosed with hypo back in Sept 2013. I had gained 80 lbs in a matter of months and felt sluggish and all of your typical symptoms. I was originally put on generic synthroid. I was allergic to it. So Endo put me on brand name. I have been taking that for 5 months and have noticed major breakouts/rash on my face and neck so bad that it drives me crazy. I just want to claw at my face. Nothing takes it away. The only thing it could be is the Synthroid. On top of it, I don't feel like it's helping me (I take 50mcg). I called and complained (I swear they thinks i'm nuts), and they are putting me on 50mcg of Tirosint. 
I was reading online that they should be starting me out at 25mcg bc it's so natural and a gelcap and it absorbs better and if you take 50mcg to start it caused hyperactive effects as well as hair falling out and heart palps, and insomnia among other scary things.

Have any of you taken this and can help me? Please?


----------



## Christine

TwizzleMouse said:


> Hi. I was diagnosed with hypo back in Sept 2013. I had gained 80 lbs in a matter of months and felt sluggish and all of your typical symptoms. I was originally put on generic synthroid. I was allergic to it. So Endo put me on brand name. I have been taking that for 5 months and have noticed major breakouts/rash on my face and neck so bad that it drives me crazy. I just want to claw at my face. Nothing takes it away. The only thing it could be is the Synthroid. On top of it, I don't feel like it's helping me (I take 50mcg). I called and complained (I swear they thinks i'm nuts), and they are putting me on 50mcg of Tirosint.
> I was reading online that they should be starting me out at 25mcg bc it's so natural and a gelcap and it absorbs better and if you take 50mcg to start it caused hyperactive effects as well as hair falling out and heart palps, and insomnia among other scary things.
> 
> Have any of you taken this and can help me? Please?



The first thing I would have you do is call the doctor's office and ask them for a copy of the lab results for your thyroid panel.  If that's a hassle for some reason, just have them read you off the values for TSH and Free T4.  I'd really like to know how hypothyroid you are before I could really comment on the dosage.

Having said that, I don't have a thyroid so when I don't have meds I get very, very hypo.  For people with slow acting thyroids, 25 mcg is the usual starting dose and they work their way up.  If you are very hypo, though, 50 mcg is not actually that bad.

Tirosint has none of the usual fillers and it absorbs well in most people.  I took it for a few months last summer and did not do well on it as it kind of gave me bowel issues. I think the dose was to much for me or it was getting into my system too fast.  So I had to stop.  I didn't feel like cutting back my dose and experimenting.

You are most likely have a reaction to one of the dyes or fillers in the regular thyroid preparations.  You should compare Synthroid and the generic brand you were taking (you can get all that info online) and see if you can pin it down to a specific filler.  It's really important to know.  

There are many people out there doing very well on Tirosint so that would be great if it works.  Also know that as your body gets used to synthetic thyroid hormone, you may feel worse before you feel better.  There is an adjustment period.  If you don't get a rash or anything with Tirosint, try to give it 6 weeks, even if you don't feel great.


----------



## luvmarypoppins

Nora - have you gotten your results yet from the fna?

Singing Mom - did you make a decision about what adventure you are going on?

Christine - I dont know how it would be with the college kids moving back home after graduation. I laugh because none of mine have ever moved out yet, unless you count the one night ds1 left. My oldest ds really makes a low salary and he is saving for a house down payment. I think with the high cost of living here they will be here for quite a while. Most of the ds married friends live in their parents basements. That is life in the burbs around here. 

Miss Micayla posting. I assume she is doing well with the little guy.

I hurt my knee. I have been wearing my knee brace. I am sure the inevitable ortho visit will come soon. I am sure he will use the s word. This knee has been on borrowed time for a long time now and especially with our family history of the connective tissue stuff. Even ds1 is making an ortho appt. 

I am also in the midst of scheduling or I should say rescheduling my reclast infusion I think I am going May 7. 

Busy month next month, 2 of the ds graduating and then also ds3 has his nursing pinning ceremony. 

My ds is in california right now. I lose track when he is going sometimes. Suffice to say he is gone alot. Well I used all his ff miles for disney, so time to rebuild them, lol. 

I am so far behind on my neck sono. Another appt. to make. 

Check in when you can.


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## luvmarypoppins

Well Sophia Vergara was on The View. They asked her about thy ca. She said she is the spokesperson for synthroid?? I thought she did a terrible job and barely said anything of interest. Ugh. She barely glazed over thy ca and didnt even describe any thyroid symptoms. She just said go see your dr. if things dont seem right? Maybe I missed something there?

Then she was on Katie today too. I think her endo was on with her? He did a good job but it was about thyroid health and did talk about cancer. 

Guess its good to get any publicity on thy stuff that we can. 

The dr. did say that drs. do not routinely check the thyroid and its so simple for them to do etc.


----------



## angwill

luvmarypoppins said:


> Well Sophia Vergara was on The View. They asked her about thy ca. She said she is the spokesperson for synthroid?? I thought she did a terrible job and barely said anything of interest. Ugh. She barely glazed over thy ca and didnt even describe any thyroid symptoms. She just said go see your dr. if things dont seem right? Maybe I missed something there?
> 
> Then she was on Katie today too. I think her endo was on with her? He did a good job but it was about thyroid health and did talk about cancer.
> 
> Guess its good to get any publicity on thy stuff that we can.
> 
> The dr. did say that drs. do not routinely check the thyroid and its so simple for them to do etc.



I have seen Sophia Vergara talk about thyroid issues before and she didn't have a clue what she was talking about then either.  I think she just had it and had it removed and didn't bother to understand what it is all about.  The drug company asked her to be a spokesperson since she is famous and she signed on for cash payment and just says yes I have this issue see your doctor and ask for synthroid. lol  Maybe they need to send a doctor with her and just use her as the face and not the information?  All I can say is I really wish I didn't have weight issues with my thyroid like she obviously doesn't have.


----------



## angwill

Christine said:


> The first thing I would have you do is call the doctor's office and ask them for a copy of the lab results for your thyroid panel.  If that's a hassle for some reason, just have them read you off the values for TSH and Free T4.  I'd really like to know how hypothyroid you are before I could really comment on the dosage.
> 
> Having said that, I don't have a thyroid so when I don't have meds I get very, very hypo.  For people with slow acting thyroids, 25 mcg is the usual starting dose and they work their way up.  If you are very hypo, though, 50 mcg is not actually that bad.
> 
> Tirosint has none of the usual fillers and it absorbs well in most people.  I took it for a few months last summer and did not do well on it as it kind of gave me bowel issues. I think the dose was to much for me or it was getting into my system too fast.  So I had to stop.  I didn't feel like cutting back my dose and experimenting.
> 
> You are most likely have a reaction to one of the dyes or fillers in the regular thyroid preparations.  You should compare Synthroid and the generic brand you were taking (you can get all that info online) and see if you can pin it down to a specific filler.  It's really important to know.
> 
> There are many people out there doing very well on Tirosint so that would be great if it works.  Also know that as your body gets used to synthetic thyroid hormone, you may feel worse before you feel better.  There is an adjustment period.  If you don't get a rash or anything with Tirosint, try to give it 6 weeks, even if you don't feel great.



Just to add to what Christine wrote, after having thyroid surgery and going super hypo for my scan my endo put me on a very high dose of levothyroxine.  He did it to get me back up to normal levels asap and my body did not have any problems going hyper which is the side effects you named with heart palps and such.  The only way you will get those effects is if that 50mg is too high for your levels and you go hyper.  Your lab results would help to now how hypo you are.  If your numbers are high enough 50mg might be your starting point to get your numbers down and on track.  HTH


----------



## Christine

angwill said:


> I have seen Sophia Vergara talk about thyroid issues before and she didn't have a clue what she was talking about then either.  I think she just had it and had it removed and didn't bother to understand what it is all about.  The drug company asked her to be a spokesperson since she is famous and she signed on for cash payment and just says yes I have this issue see your doctor and ask for synthroid. lol  Maybe they need to send a doctor with her and just use her as the face and not the information?  All I can say is I really wish I didn't have weight issues with my thyroid like she obviously doesn't have.



Sophia Vergara had her thyroid out, I think, when she was 19.  She is pushing 40 now.  I bet she doesn't even remember it and follow on treatment has probably not been that aggressive for her if I remember correctly.


----------



## luvmarypoppins

Well I finally got an appt. for the reclast infusion for next wed. 

Did I mention how I was having a problem with my knee. Its really painful and I have had to use my knee brace and a lot of pillows on  the chairs I sit in so I dont bend it too much getting up and down. 

Now today oldest ds went to the ortho because he was having hip and knee problems. The ortho wants him to have a hip replacement He is only 26. He says he thinks his knee problem is the result of the hip problem. Of course he is upset and not a wealth of information or understanding. They want him to get an mri of his knee and are pulling his old surgery records. The surgeon in the group who already operated on him has retired. I know that the surgeon took a picture of ds knee and put it in his chart during the surgery because e said he never saw anything like it in his life. The cartilage is all soft and should not be like that. I know there are def. genetic stuff going on here. 

My head is spinning and my heart is hurting for my ds. He said the dr. did say if he got another opinion the surgeon would say the same thing. sigh.


----------



## angwill

LMP,  I am so sorry that you got such bad news for your DS.  That sounds so painful.  I do hope he can get it fixed maybe with not such an aggressive surgery. This has to be awful for you son to think about. Will you get a second opinion?    

Ang



luvmarypoppins said:


> Well I finally got an appt. for the reclast infusion for next wed.
> 
> Did I mention how I was having a problem with my knee. Its really painful and I have had to use my knee brace and a lot of pillows on  the chairs I sit in so I dont bend it too much getting up and down.
> 
> Now today oldest ds went to the ortho because he was having hip and knee problems. The ortho wants him to have a hip replacement He is only 26. He says he thinks his knee problem is the result of the hip problem. Of course he is upset and not a wealth of information or understanding. They want him to get an mri of his knee and are pulling his old surgery records. The surgeon in the group who already operated on him has retired. I know that the surgeon took a picture of ds knee and put it in his chart during the surgery because e said he never saw anything like it in his life. The cartilage is all soft and should not be like that. I know there are def. genetic stuff going on here.
> 
> My head is spinning and my heart is hurting for my ds. He said the dr. did say if he got another opinion the surgeon would say the same thing. sigh.


----------



## mrsklamc

Hi all, just wanted to say "Hi, I am here and still alive!" Lots of updates...will try to get back on later today and do that.


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## chainkid

luvmarypoppins said:


> Well I finally got an appt. for the reclast infusion for next wed.
> 
> Did I mention how I was having a problem with my knee. Its really painful and I have had to use my knee brace and a lot of pillows on  the chairs I sit in so I dont bend it too much getting up and down.
> 
> Now today oldest ds went to the ortho because he was having hip and knee problems. The ortho wants him to have a hip replacement He is only 26. He says he thinks his knee problem is the result of the hip problem. Of course he is upset and not a wealth of information or understanding. They want him to get an mri of his knee and are pulling his old surgery records. The surgeon in the group who already operated on him has retired. I know that the surgeon took a picture of ds knee and put it in his chart during the surgery because e said he never saw anything like it in his life. The cartilage is all soft and should not be like that. I know there are def. genetic stuff going on here.
> 
> My head is spinning and my heart is hurting for my ds. He said the dr. did say if he got another opinion the surgeon would say the same thing. sigh.



I had a double hip replacement two years ago after suffering many years of crippling knee pain.  I no longer have any knee pain at all and the hips feel normal.  The operation for me was a piece of cake and i had each one done about 6 months apart.  I initailly went to surgeon for my knees and he said to get my hips first and if I then had the same problems then I could get a knee replacement. Well I do not need one now so your SR is not blowing smoke. Hip operations today are much better than in the past and the implants last alot longer.  I have lots of other problems like thyroid and breat cancer as well as diabetes but still sailed thru this and only wish i hadn't waited so long. Being pain free when walking is a true life changer


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## mrsklamc

LMP I am sorry to hear that about your son but I hope it helps him..

My baby boy is doing pretty well considering the DS... he has small holes in his heart that the cardiologist thinks will heal on their own, some mild to moderate hearing loss that hopefully will improve as his tiny little ear canals grow, and overall muscle weakness that is typical of down syndrome. 

He's a sweet, snuggly boy and I love being his mommy.

So now it's time for Thyrogen again....copay is $2700!  Caremark says there may be some assistance in the form of a grant...we'll see I guess.


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## angwill

mrsklamc said:


> LMP I am sorry to hear that about your son but I hope it helps him..
> 
> My baby boy is doing pretty well considering the DS... he has small holes in his heart that the cardiologist thinks will heal on their own, some mild to moderate hearing loss that hopefully will improve as his tiny little ear canals grow, and overall muscle weakness that is typical of down syndrome.
> 
> He's a sweet, snuggly boy and I love being his mommy.
> 
> So now it's time for Thyrogen again....copay is $2700!  Caremark says there may be some assistance in the form of a grant...we'll see I guess.



It is so wonderful finally hearing about your sweet baby boy.  He sounds like a little angel.  I hope all those issues he has all resolve themselves and he will forever be healthy and happy.


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## mrsklamc

Thank you!! And I cleaned out my full inbox.


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## luvmarypoppins

Micayla - I am doing a  post just for you! Your little boy sounds like a wonderful little blessing! Enjoy every minute with him. 

Happy lst Mothers Day!!!!


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## luvmarypoppins

Micayla - Are you just having to do a thyrogen only scan and no lid??? 

Do you have any kind of precautions with the baby??

I hope you get a nice clean scan for sure!!!

I had the reclast infusion yest. Had ds3 our almost nurse take me. I do that so he learns more plus listens about jobs etc. Heah, you gotta network alot these days. The only side effect I am having now is the bone pain. Its not that bad. Last night my R jaw popped really loud twice for no reason. Scared even dh. I did notice that the pain is only where my bones are already giving me pain and are a problem already etc. The nurse did say to take tylenol if needed. 

Mon. I am going to the eye dr. I am a little worried about that. Dh and I havent been there in 4 years. I dont know if the dr. was preoccupied. She was just coming back from a leave and chemo for her ovarian cancer. She is a fighter and has had a for a long time. 

But she misdiagnosed my scarred tear duct etc. I just hope she gets the eyes right and I am going to mention the tear duct to her. 
Whats everyone doing for Mothers Day? We are going to church and I asked the ds to cook a brunch and a bbq for dinner. One ds mght have to work, we shall see. 

Check in when you can.


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## SingingMom

Happy Mother's Day to all!   I have been busy as musical director for our parochial school's production of "Peter Pan Jr".  The director has decided he needs my voice to add some meat to the singing, so I get to dress up like a pirate and sing along. Lol  Show is next Thursday & Friday. Dd20, who is a theatre major and future  hopeful Disney cast member, had been helping coach Tinkerbell and Peter. Lots of fun.

"SingingMom" ....Sent from my iPad using DISBoards


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## angwill

Glad things went well for you with the reclast infusion.  Except for that pain that I do hope is only temporary.  

Good luck with the eye doctor.  It is usually best to warn the doc about things going on.  

I was talking to the head of my hospital's nuclear medicine department and asked him why they don't do the low sodium diet.  He said they do not have a problem with enough RAI being taken into the tissues during treatment.  He claims that the thyroid is made to take it up and he doesn't feel there is a need to deplete it of iodine.  I asked about with the scans and he said they have no problem seeing the excess tissue, cells as well as the trac through the body that the tracer dose makes without the diet.  Then he teased me and said if I want to torture myself more by going on the diet to go ahead and do it.

He actually reminds me of the absent minded genius.  He told me of tests he has done with certain patients sending them all home with the tags they use for those who work around the radioactive iodine for everyone in the family including the dog.  He wanted to see how much radiation they were exposed to after the thyroid patient went home after treatment.  He said test after test showed that family is as effected as the healthcare workers and in his words that is not at all.  I find him interesting but almost think he does his own thing based on his own opinions and testing vs reading what the experts suggest and do.  I don't know where I stand on it after what I have researched vs what he has to say about it all.  

Happy Mother's day to everyone!!!!



luvmarypoppins said:


> Micayla - Are you just having to do a thyrogen only scan and no lid???
> 
> Do you have any kind of precautions with the baby??
> 
> I hope you get a nice clean scan for sure!!!
> 
> I had the reclast infusion yest. Had ds3 our almost nurse take me. I do that so he learns more plus listens about jobs etc. Heah, you gotta network alot these days. The only side effect I am having now is the bone pain. Its not that bad. Last night my R jaw popped really loud twice for no reason. Scared even dh. I did notice that the pain is only where my bones are already giving me pain and are a problem already etc. The nurse did say to take tylenol if needed.
> 
> Mon. I am going to the eye dr. I am a little worried about that. Dh and I havent been there in 4 years. I dont know if the dr. was preoccupied. She was just coming back from a leave and chemo for her ovarian cancer. She is a fighter and has had a for a long time.
> 
> But she misdiagnosed my scarred tear duct etc. I just hope she gets the eyes right and I am going to mention the tear duct to her.
> Whats everyone doing for Mothers Day? We are going to church and I asked the ds to cook a brunch and a bbq for dinner. One ds mght have to work, we shall see.
> 
> Check in when you can.


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## angwill

SingingMom said:


> Happy Mother's Day to all!   I have been busy as musical director for our parochial school's production of "Peter Pan Jr".  The director has decided he needs my voice to add some meat to the singing, so I get to dress up like a pirate and sing along. Lol  Show is next Thursday & Friday. Dd20, who is a theatre major and future  hopeful Disney cast member, had been helping coach Tinkerbell and Peter. Lots of fun.
> 
> "SingingMom" ....Sent from my iPad using DISBoards



Happy Mother's day.  That is wonderful that you are doing the Peter Pan musical.  Weren't you the lady who had a problem with your vocal cords after thyroid cancer?  If so that is wonderful that you are able to still sing.  It sounds like a lot of fun.


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## SingingMom

angwill said:


> Happy Mother's day.  That is wonderful that you are doing the Peter Pan musical.  Weren't you the lady who had a problem with your vocal cords after thyroid cancer?  If so that is wonderful that you are able to still sing.  It sounds like a lot of fun.



I was very blessed that I had an excellent surgeon who was very aware of my being a singer. Lots of surgeon skill and lots of prayer and I never had any problems. I actually sang stronger afterwards!  That was my initial fear - not that I had cancer, but that I might not be able to sing again. God is good!  ;-)

I have heard of people who have suffered from vocal chord paralysis, etc. thankfully, I didn't experience any problems!  I DID have to refrain from singing for two months. that was hard for me!  Lol

"SingingMom" ....Sent from my iPad using DISBoards


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## 3DisneyBuggs

Hope all are doing well here. I had a 6 month follow up on my nodule today. The last FNA I had showed inconclusive so they did genetic testing and it came back benign. My ultrasound today showed it grew by 1 cm. So another biopsy was done ouch. Now I wait and worry- last time it was 2 weeks for the regular biopsy results. The Dr said there was no blodd supply and no calcifications on the nodule. My aunt and cousin had thyroid nodule removed tears ago so Im wondering if they are hereditary. Not sure what to expect from the results.Thanks for reading and Happy Mothers Day.


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## angwill

Singing Mom, 
That is such a blessing that your voice was not touched except a bit of improvement.  There is someone I have talked to in the past that was a singer and was devistated when they lost their singing voice.  I am so glad that didn't happen with you.  I am not a professional singer but like to sing at home and was worried about losing that ability too.  

3disneybugs, 
Thyroid issues are hereditary.  Do you know if your family that had the nodules removed had benign tumors too? 

You are in the worst stage of having a nodule, the waiting stage. It's horrible and all of us here have been there.  I do hope it all comes out benign and stops growing forever.  Unfortunately, it is something you will still have at the back of your head unless it is removed.  
Happy mothers day to you too.  Let us know how it goes.

Ang


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## Nora03

Hi
I haven't been on here for awhile.  I had another ultrasound in early April and the doctor determined that I didn't need a biopsy as the nodules are small and had not grown.  (My thyroid is multi-nodular.)  So, I'm pretty happy with that.  I will have an annual ultrasound and he said that if the nodules grow then he recommends surgery to remove the thyroid.  So, right now I'm okay with waiting.  I've managed to put it out of my mind as long as it is monitored.

Good luck to everyone on here and Happy Mother's Day!


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## annegirl

Hi! I just found this thread and hope to be able to go back and read through a lot of it. 
A couple of years ago my heart just had a skipping feeling one night and then it started happening every day and just got worse. 
After one dr telling me that I was fine, I finally at the almost two year point went to a cardiologist and he had my thyroid tested.
I am on a med for my heart to slow down my heartrate.
I went to the endo and was put on methimazole- two pills a day.
I felt great for about 5 weeks and then every joint in my body was hurting for two weeks. It was the most excruciating pain I have ever been in.
I went to the dr but he said he had never heard of that happening as a side effect.
I went off of it for two weeks and then went back on at a lower dose- only one pill.
It has been 7 weeks now. I feel good though not as great as I did before and am having a little bit of tightness in some of my joints so I am a little worried that it might happen again. Hoping it doesn't.
He told me that I have Graves disease.
It is still up in the air about whether I will do the iodine radiation.
I don't know too much about it and the more I research it seems the more I get differing views that are either really positive or really negative.
I just want to feel normal again! And to have a heart that never skips!


----------



## Christine

annegirl said:


> Hi! I just found this thread and hope to be able to go back and read through a lot of it.
> A couple of years ago my heart just had a skipping feeling one night and then it started happening every day and just got worse.
> After one dr telling me that I was fine, I finally at the almost two year point went to a cardiologist and he had my thyroid tested.
> I am on a med for my heart to slow down my heartrate.
> I went to the endo and was put on methimazole- two pills a day.
> I felt great for about 5 weeks and then every joint in my body was hurting for two weeks. It was the most excruciating pain I have ever been in.
> I went to the dr but he said he had never heard of that happening as a side effect.
> I went off of it for two weeks and then went back on at a lower dose- only one pill.
> It has been 7 weeks now. I feel good though not as great as I did before and am having a little bit of tightness in some of my joints so I am a little worried that it might happen again. Hoping it doesn't.
> He told me that I have Graves disease.
> It is still up in the air about whether I will do the iodine radiation.
> I don't know too much about it and the more I research it seems the more I get differing views that are either really positive or really negative.
> I just want to feel normal again! And to have a heart that never skips!



I am not an expert on Graves Disease by any means, but many patients opt to have the thyroid shut down by radioactive iodine for the reasons you have already listed.  You end up taking multiple medications to try to slow down the thyroid and to smooth over the symptoms caused by the hyperthyroidism.  If you have an ablation, you will "baseline" your thyroid gland and then have a lifelong dependence on T4 medications (Synthroid is one brand name).  This has it's own issues for some people but, in general, it is not as much of a roller coaster as trying to live with your overactive thyroid gland.


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## angwill

annegirl said:


> Hi! I just found this thread and hope to be able to go back and read through a lot of it.
> A couple of years ago my heart just had a skipping feeling one night and then it started happening every day and just got worse.
> After one dr telling me that I was fine, I finally at the almost two year point went to a cardiologist and he had my thyroid tested.
> I am on a med for my heart to slow down my heartrate.
> I went to the endo and was put on methimazole- two pills a day.
> I felt great for about 5 weeks and then every joint in my body was hurting for two weeks. It was the most excruciating pain I have ever been in.
> I went to the dr but he said he had never heard of that happening as a side effect.
> I went off of it for two weeks and then went back on at a lower dose- only one pill.
> It has been 7 weeks now. I feel good though not as great as I did before and am having a little bit of tightness in some of my joints so I am a little worried that it might happen again. Hoping it doesn't.
> He told me that I have Graves disease.
> It is still up in the air about whether I will do the iodine radiation.
> I don't know too much about it and the more I research it seems the more I get differing views that are either really positive or really negative.
> I just want to feel normal again! And to have a heart that never skips!



I think most people I have seen post have hypothyroidism and most with removal of the thyroid due to cancer.  I could be wrong though.  

I don't really know much about hyperthyroidism and Graves and have only been hyper twice in about 20 years. I can tell you when I was hyper I did have the awful joint pain and sometimes it would be sore for several days afterward.  It is extremely painful and sadly my endocrinologist said it is not a side effect of thyroid problems but I know it is and he says that about everything that I know is related to the meds and/or condition.  He just doesn't want to be bothered with the side effects and wants a general practitioner to handle it as something non related.  

I have never had heart issues related to my thyroid that I know of.  

I do hope you get your answers and get your thyroid back on track where it should be.  

Ang


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## luvmarypoppins

singing mom - that is so great about the musical. You are very talented indeed! Glad you have your singing voice, sadly I lost mine, oh well. Did you decided which Adventure you are going on?

3disneybuggs - I hope you get good results from the fna

Nora - Its good they are still checking on your nodules. 

annegirl -I am sure there is a lot to consider with the ablation. Wishing you all the best.

Christine - how was your dd's graduation? What are you reading? I am reading another Amish story. Kind of boring right now. I just read a historical romance about WWII. I just won a few more books so they are in the tbr pile.

Anyone planning to see the movie, The Fault in Our Stars? Dh says we shouldnt go because it hits too close to home etc 

I am beyond exhausted. I was having so much bone pain from the reclast. You could actually hear the bones cracking and popping. It was scary. I called the endo. Of course I got some other on call dr. who called me back. She was useless, said these symptoms should subside,very usual, blah, blah, yeah, yeah. I also had a problem with thesynythroid refill again. Found out they only ordered 3 months. She usually does 6. So f course I hate electronic scrips. I am going over each one next time. Lesson learned.

I also said there is no way I am having this reclast infusion next year unless she gives me a script for a narcotic pain killer for the bone pain. Its too much on me at times. 

Busy graduation time for us. Friday was ds3 nursing pinning. It was nice. But long and then we went out to diner with some of his friends. It was after midnight by the time we even started home in a terrible rain storm and I hurt my knee getting in the van so I will def. be using the knee brace a lot more. 

Yest. as the actual graduation. Dh and I got smart and I brought my grandmas wheelchair and I sat in it. He actually got the hard plastic chair. When we sat on the chairs fri. we said it was worse than Southwest Airlines. lol. My dh got one of the last parking places in the lot and thank heavens s was called up toward the begging wit the nurses gong first. So we only had to stay there over 3 hours. 

I get to do this all over again Fri with ds2 graduation. We are only going to his small dept. ceremony where he gets the actual degree. I am not going to the massive stadium ceremony. Its suppose to be cold and there is also no way I could tolerate sitting all that long. He doesnt communicate well so I dont know what the dinner plans or anything else is.

Then tomm. my dh is leaving for Michigan so he will miss my b day and our anniv. I am so not happy about this. He comes home for the graduation and then next week he is off to Calif. again. My head is spinning lately. 

Check in when you can.


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## SingingMom

Peter Pan was a success!  The younger students especially got quite a kick out of me on stage as a drunken pirate. ;-) 

Still up in the air with summer vacation plans. Our friend got his schedule later than last year & unfortunately his ABD tours were all sold out. We are holding out a little longer for a cancellation, but it looks like we might try Disney Aulani in August. Dd20 wants to go to Disneyland and Hollywood, but that doesn't interest me right now. We go to WDW in January, I'd like a beach somewhere!  

My internist changed the dosage of one of my medications, because I've gained 20 pounds in two years. :-(   BP is elevated too, might need to increase those meds. See cardiologist and endocrinologist in September.  Two weeks from now is gynecologist appt and oral surgeon to start procedure for an implant.  This week appt with orthopedist for DD20 after 6 weeks of PT on her knees.  Enough of doctors!!!  Lol

Stay well, all!

"SingingMom" ....Sent from my iPad using DISBoards


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## luvmarypoppins

angwill and Micayla - how did your scans turn out. I remember both of you commenting about the thyrogen etc. 

My dh friend is getting his thyroid out at Sloan Kettering. Its not cancerous but its full of nodules and hurts him. Dh notices his voice is getting raspy etc. He also has some blood clot issue so I guess its good he is going there. I think its scheduled for July as of now.


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## Christine

LMP--Graduation was beautiful.  Very nice weather and great speakers!  My son was feeling awful so that put a real damper on the day, but otherwise it was a nice day.  We've got her moved out but she immediately went on a trip with her friends to Gulf Shores, Alabama.  She should be home (permanently) tomorrow.  This will be something!!

I am currently reading a book called The Husband's Secret by Liane Moriarity.  It's an okay book.  Next up will be a book a friend lent me called The Anti-Cancer Life book or something like that.  Supposed to be very good.

It should be a fun summer with both "kids" at home.  My house feels VERY cramped.


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## SingingMom

Well, I spent this evening doing what I do best - spend my DH hard-earned money!!  We were disappointed our ABD plans didn't work out the way we wanted this summer, so we went with Plan B.  (and Plan C. )

Booked a four night "Mother-Daughter" Trip to WDW in July and a family vacation to Disney's Aulani in August!!   Never been to Hawaii, so this will be a neat experience.  DD will turn 21 during the trip, so she can enjoy a few "adult beverages" with us.


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## mrsklamc

Hi there! I need to figure out how to change this thread's settings so it updates me every time there's a post! I don't know how I changed it. Thyrogen is Monday, which coincidentally means my blood draw will be the same day The Fault in Our Stars comes out. I didn't identify with Hazel when I read it, really, since her cancer is so aggressive, but LMP for you your husband may be right since your experience was outside the norm as well. I loved the book and do plan to see it. It is set in Indy but was not filmed here so it will be interesting to see how they do that. 

Angwill did you have your scan already w/o thyrogen? If not PM me and I will give you the info on the grant that is paying for mine. I didn't think I would qualify but you can have income up to 500% of the poverty level. 

LMP I hope you had a happy birthday. Your husband must do very important stuff!


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## angwill

mrsklamc said:


> Hi there! I need to figure out how to change this thread's settings so it updates me every time there's a post! I don't know how I changed it. Thyrogen is Monday, which coincidentally means my blood draw will be the same day The Fault in Our Stars comes out. I didn't identify with Hazel when I read it, really, since her cancer is so aggressive, but LMP for you your husband may be right since your experience was outside the norm as well. I loved the book and do plan to see it. It is set in Indy but was not filmed here so it will be interesting to see how they do that.
> 
> Angwill did you have your scan already w/o thyrogen? If not PM me and I will give you the info on the grant that is paying for mine. I didn't think I would qualify but you can have income up to 500% of the poverty level.
> 
> LMP I hope you had a happy birthday. Your husband must do very important stuff!



I don't get updates all the time either.  I noticed unless I check in on the dis daily it doesn't send them.  

I did get my scan with the thyrogen.  I would not have done it without there was no way I was going back to hypohell.  I would literally rather die.  I can not imagine our bodys going through supression like that does not do more permenant damage to our body system such as the heart, mind etc.

I did get the grant as well thankfully and am so glad to hear you qualified as well.  What a blessing it is.

LMP,  My scan came back completely clean thanks for asking.  The spot under my armpit is gone, I think it was a ghost shadow, and there is absolutely no tissue showing in my neck.  What a blessing.  A friend who went through TT at the same time as me had bad news from hers and it spread quit a bit she had to go back in and get things scraped and cut out.  It is just so sad to watch her go through all that.  She is going for a higher dose of RAI as well and has little children at home.  My heart just goes out to her.


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## bridgetzoe

Hi All! 

I'm happy to have stumbled upon this thread to share my thyroid story with people who also have a passion for Disney. I was recently diagnosed with hyperthyroidism/Graves Disease a little over a month ago - and I had never heard of it before then. I've seen three endo's and I think I finally figured out that I will end up doing the RAI (radioactive iodine) treatment, even though I wanted to just do the surgery at first. I've been off the methimazole for five days now, but still taking the beta-blocker. Hoping to do the actual treatment within the next month!

It's been a roller coaster because my husband and I wanted to start trying for a baby this year, but that has now been placed on hold until after the treatment and the waiting of at least six months before we can try now.

My thoughts and prayers are with all of you who are going through or have had to go through something like this...it's the worst feeling, and it's hard to explain it to people when you aren't showing any outward signs of problems.


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## SingingMom

bridgetzoe said:


> Hi All!  I'm happy to have stumbled upon this thread to share my thyroid story with people who also have a passion for Disney. I was recently diagnosed with hyperthyroidism/Graves Disease a little over a month ago - and I had never heard of it before then. I've seen three endo's and I think I finally figured out that I will end up doing the RAI (radioactive iodine) treatment, even though I wanted to just do the surgery at first. I've been off the methimazole for five days now, but still taking the beta-blocker. Hoping to do the actual treatment within the next month!  It's been a roller coaster because my husband and I wanted to start trying for a baby this year, but that has now been placed on hold until after the treatment and the waiting of at least six months before we can try now.  My thoughts and prayers are with all of you who are going through or have had to go through something like this...it's the worst feeling, and it's hard to explain it to people when you aren't showing any outward signs of problems.




Best wishes to you!  I was diagnosed with Graves Disease and had the dosage of RAI Aug 1991, then a nodule  was found and had a a total thyroidectomy for papillary carcinoma. My surgery was Feb 1992, I got pregnant in Nov 1992, and our beautiful, healthy little girl was born Aug 1993.  

I will say, I choose NOT to gave the massive RAI treatment after my thyroidectomy, since my body scan came back just over 2% of thyroid tissue present. Since I knew I would be diligent in seeing my endocrinologist for the rest of my life, I decided to take a wait & see if needed approach.  Over 20 years later - still good!

"SingingMom" ....Sent from my iPad using DISBoards


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## 3DisneyBuggs

Waiting is really the worst. 2 weeks after my FNA my Dr calls on Memorial Day to say it is the same atypical result as 6 months ago. So they are doing the Quest molecular testing again. He said a week or 2 for those results. He said the results showed some atypical but now Im wondering if I could possibly have follicular cancer. I will be getting all my reports and will get a 2nd opinion because not knowing and relying on tests is just not for me. I feel like I should get this nodule removed regardless. Thanks for listening.


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## angwill

3DisneyBuggs said:


> Waiting is really the worst. 2 weeks after my FNA my Dr calls on Memorial Day to say it is the same atypical result as 6 months ago. So they are doing the Quest molecular testing again. He said a week or 2 for those results. He said the results showed some atypical but now Im wondering if I could possibly have follicular cancer. I will be getting all my reports and will get a 2nd opinion because not knowing and relying on tests is just not for me. I feel like I should get this nodule removed regardless. Thanks for listening.



Yes waiting really is the worst.  I am sorry you have to go through all that.  I have found over the years with my doctors that if the results are bad I hear in about 24-48 hours from testing.  If they are good it can take up to 2 weeks to hear back.  My FNA cancer results were told to me by my doctor over the phone the same day I had it done.  She then asked if I wanted to schedule an appointment to talk to her one on one.  I always see having to wait more than 2 days means my results are good.  

It is understandable that you are anxious for a definite diagnosis and sometimes a second opinion will make you feel better so go for it.  I fired my first doctor who sent me for my ultrasound which showed a mass on my thyroid.  She refused to call me herself and her nurse told me I had cancer without a FNA.  Then this doctor wanted me to get a WBS before FNA and I told the nurse I wanted a biopsy to tell if it was cancer done right away and didn't want to waste time on a WBS that would not tell us if it was cancer.  She told me the doctor said no I had to do it her way.  I said no I needed to find a new doctor who listened and explained things to me and I did.  She had no clue why the other doctor wanted to waste months on a WBS and sent me for FNA right away.  We are our own best advocates.  

Good luck and let us know how it goes.


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## mrsklamc

It's just occurred to me that I see no surgery scar in ads for The Fault in Our Stars. If I am correct I will find it a disappointing oversight.


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## SingingMom

mrsklamc said:


> It's just occurred to me that I see no surgery scar in ads for The Fault in Our Stars. If I am correct I will find it a disappointing oversight.



I am late to the party ... Is the movie about thyroid cancer?  

I must admit, I have no visible scar.  You have to look REAL closely to see it.  My surgeon was amazing.

"SingingMom" ....Sent from my iPad using DISBoards


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## mrsklamc

The female lead in The Fault in Our Stars is dying of thyroid cancer. In the book she's had a radical neck dissection. You can barely see my scar on the front, but up the side it's much more noticeable. I'd think you'd almost certainly see one on someone with a pixie cut who had that particular procedure, but I could be wrong.


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## SingingMom

mrsklamc said:


> The female lead in The Fault in Our Stars is dying of thyroid cancer. In the book she's had a radical neck dissection. You can barely see my scar on the front, but up the side it's much more noticeable. I'd think you'd almost certainly see one on someone with a pixie cut who had that particular procedure, but I could be wrong.



Thanks for the heads up. I am cancer free for 20 years, but there's no way I'm watching a movie about someone dying from thyroid cancer!!

"SingingMom" ....Sent from my iPad using DISBoards


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## Christine

SingingMom said:


> Thanks for the heads up. I am cancer free for 20 years, but there's no way I'm watching a movie about someone dying from thyroid cancer!!
> 
> "SingingMom" ....Sent from my iPad using DISBoards



Spoiler Alert:  Don't read any further if you don't want to know.  Text is in white.









No one dies from Thyroid Cancer....

It's a wonderful, beautiful story (I've read the book) and I wonder how the movie will do.


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## angwill

I had no clue what the person in The Fault in our Stars was suffering from.  I thought possibly cancer or cystic fibrosis or some other lung disease.  Now I am going to have to read the book and see the movie and it's all this threads fault. lol  

I am always looking for good books.


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## SingingMom

angwill said:


> I had no clue what the person in The Fault in our Stars was suffering from.  I thought possibly cancer or cystic fibrosis or some other lung disease.  Now I am going to have to read the book and see the movie and it's all this threads fault. lol  I am always looking for good books.



I love to read. Always reading!  But thyroid cancer is too personal for me to read for enjoyment. 

"SingingMom" ....Sent from my iPad using DISBoards


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## luvmarypoppins

bridget - welcome, although I cant comment about the graves disease. Wishing you all the best no mater what you decide. Hope you get to feeling like yourself soon

ang - hooray for the great scan. Just curious if your friend who had the bad scan did the lid or not. 

3 disneybuggs - I am sure the waiting is the hardest. I am sure it will be a decision made after alot of research and thought. 

Micayla - I am assuming your scan is tomm? Hows the little guy?

singingmom - your trip sounds wonderful. That is great that you have no scar.

Christine - I am reading a book I won from goodreads. Its a western and boring. I thought I would try something different. Its the authors first book. I think she needs a little work on her craft, lol.

My scar is big of course. Looks like a giant smile in front and then of course up the L side from the lymph nodes and near death experience. I am sure it wasnt pretty getting that 12.5 cm tumor out of there, lol. 

Dh still doesnt want to see the movie.

Well my dh is home. Yeah. And now oldest ds has just informed me that his position is being terminated by his employer. How nice of them when they know he probably needs a hip replacement and all the college kids just graduated and probably have a head start now on interviews, searches etc. I did a little research myself right now since he is in the shock and awe stage. I found one job for him. He is lucky that his job now is only in the next town. He probably wont find that ever again for sure. Its going to be a long summer and I am sure going to be praying alot. 

I have 2 meetings this week. Sadly I think it will be the last year for our little school here. I also have a new appreciation for teachers because I am also working on my bible school stuff for the kids in July. I love 3rd grade. They arent too bad at that age.


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## angwill

singing mom, Your feelings on not wanting to see the movie are completely understandable.  

LMP,  Thanks for the congratulations on my good scan.  My friend with the bad scan only did LID the first time she got RAI and now for the second round she is doing it again.  She got thyrogen shots and no LID diet for the testing WBS.

It might be wise to listen to your husband about the movie.  Sometimes those around us know us better than we know ourselves.  So sorry about your son losing his job.  My son lost his job like 3 days before Christmas over another person's error and something his company was doing illegally.  He had to fight 3 months for his unemployment since his employer felt he didn't deserve it.  Sadly, he is still looking for a job over 5 months later and he has applied everywhere including fast food.  We are in a really bad area for employment.  Small town USA where the economy wiped out our jobs first and they never recovered.  We are still hopeful.  We had to close down our company almost two years ago and DH is now driving 2 hours each way for work.  We tried to sell our house for the last 3 years and have yet to sell it either so that drive will continue.  I will add your son to my prayer list and hope he finds something soon with excellent insurance.  

I used to work at a school for Learning and Behavior issue teens, middle to high school.  I had previously worked in the special needs classes in elementary school and thought there was no way I could handle the teens but surprisingly I loved it.  It really shocked me that it was as rewarding as it was but the school I worked at was small and excellent at working with the kids.


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## mrsklamc

I guess I should clarify a little bit; You do find out at the very beginning of The Fault In Our Stars that Hazel, the main character, has terminal thyroid cancer, but overall thyroid cancer is not discussed very much at all, and it is a lovely, beautifully written story. In fact her specific course of treatment/the drug she is on doesn't even exist. I saw a prescreening of it tonight, and was quite pleased with the job they did overall. Usually I love books so much that I'm not at all pleased with the movie version. There are a few things I would nitpick but not a bad job at all. Probably lousy timing though, they did do a very brief flashback of scenes when she is getting treated and with my testing going on I had a moment of "Oh, God, please, I can NOT do this again."

I had thyrogen yesterday and today and a blood test Friday; if that's ok, I won't be doing a scan this go-round.

Baby boy is growing so well and I will be just crushed if I have to be away from him for a scan.

LMP, is the son who lost his job the nurse or is it your younger son that is studying to be a nurse?


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## SingingMom

So sorry to hear of those losing their jobs. :-(
Such a difficult thing to go through. 
My DH entire department was eliminated 10 years ago and it took him a year to find another job.  We were lucky that I was working at the time (for peanuts, at DD parochial school) nod was able to get health insurance for the time period. He had an excellent severance package, so we were never without, but it is a scary feeing.  Prayers that all of your sons, etc, find employment soon!

Had oral surgery this week and am up at 3am now, very uncomfortable.  Ugh.


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## luvmarypoppins

Micayla - I am assuming you didnt get any side efrects from the thyrogen like nausea or headache. Best of luck with the blood test on Friday. I guess you will have to wait for the results?? That is hard for sure.

My oldest ds is the one losing his job. He is in banking/marketing
Middle ds will probably not have a job by october as the internship is not being refunded. He is an engineering science major. I think he needs to go to grad school to specialize in something. 
Ds 3 will look for a nursing job once he passes the nclex, Hopefully on the first time since he took a practice test and passed. He will probably do home care since he will only be an rn working on the bsn. 

Ds1 told us that he has until august for his job to be terminated so that is good. He could research the hip replacement more.

I told him to look into cobra about the health insurance and he said, what is cobra, oh gheesh.  

I have been so tired lately and I dont know why. I am hoping my tsh is not up again. My blood test is next month.


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## mrsklamc

No side effects from the thyrogen at all... I think I felt a bit more tired than usual last time, but I don't think I would notice this time 

I am sorry you are feeling tired.


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## branv

Hi everyone! I was hoping to get some insight on your thoughts on what my new endo had suggested?  You were so helpful last year when I was going through my suspicious test results while pregnant, hoping you can extend some more wisdom.

To rehash:

2001: benign FNA on two nodules, mild hypo and hashi DX. Only under care of GP from 2002-2012.

Dec 2012: have been off meds for 2 years bc TSH has been normal. New sono shows nodule growth. FNA shows one nodule benign, other suspicious bc it has hurthle cells and scant colloid (hurthle cells can be benign or malignant but this can only be diagnosed by thyroid removal, not FNA). Also shows extensive lymphocytic background, meaning chronic thyroiditis damage. Affirma test can't rule out cancer either. ENT considers thyroidectomy during 2nd trimester, but consult with super thyroid cancer expert at MD Anderson says don't touch it for now, he can't say there's not cancer, but that hurthle cells are common in hashimotos. He also has some issues with Affirma. Says to just monitor for growth. Perinatologist says TSH is 3.8, but in my situation he wants to see me under 2, and puts me on  Levo.

No new growth during pregnancy. In fact, some incremental decrease in size of nodules.

One month after delivery, new sono still shows no change in nodules. Began experiencing issues about 2 months postpartum which I assumed was just normal post pregnancy hormone flush. Realized later it was so so so much more. Obviously went into postpartum thyroiditis ie I went hyperthyroid before going hypo a few months later. Sono in April showed a new 2 cm nodule (though later they realized it had already been there, but was hidden by the other nodules, and just grew enough to finally reveal itself).  FNA just says changes consistent with Hashimotos. FINALLY doctor runs not just a usual thyroid test, but also antibodies. My T3 and T4 are normal, but TSH is 10.6 despite being on 50 mcg of Levo, and one of my antibodies that is supposed to be under 9 is over 700!

For the first time of being hypo, I am definitely now experiencing obvious symptoms that affect my quality of life.

SO, finally saw an endo (wow is it hard to find a good one). Very first meeting she tells me I should have my thyroid out. Not just bc of the "suspicious" one, but bc she says I will just keep going through this with new nodules/growth/FNAs, and constant med adjustment. I'm just surprised she said that so fast. Like... eh, it's just a thyroid. I told her I wasnt set against it, but with an 8 month old it wasn't a good time. She said no rush and upped my meds to 1 MCG and switched me from Levo to synthroid.

Ugh... Sorry for the novel. But, i'm just a little confused and unsure if this endo seems to be erring on the side of caution or cavalier. I'd love your BTDT opinions.


----------



## Christine

Actually, I happen to agree with the new endo's consensus.

Your thyroid gland is nothing but trouble.  You have several nodules that are changing and at least one you can't get comfort on.  My friend had her thyroid out last year and her nodule had the exact same reading as your (Hurthle, colloid, etc).  She had many biopsies done.  She finally had it out because the nodules were getting large and she could feel them.  The one with Hurthle and colloid did have thyroid cancer in it (papillary).  It was a microcancer so no one was concerned but, with NOT getting the surgery, she was facing year after year of follow ups, biopsies, ultrasounds, etc.  She just didn't want to do it.

Your gland is not going to get better and you will be struggling to regulate for the rest of your life as it swings from functioning one day to not functioning the next.  I also don't know if you plan to have more children, but if you cannot get it under control, it could impede that process.

As for the timing of having it removed, it will never be a good time.  When my youngest was 8 months old and my oldest was 4 years old, I had to have mine removed because of thyroid cancer.  It was no picnic for sure; however, I can't think of any time during their childhood that would have been better.  Maybe when they were in middle school?  Now, when they are in college is probably the best time!!!  To be honest, it might be better to do this when your child is not so mobile.  But I understand that this is a lot to take in and I certainly don't want to make it sound like it's an emergency.  Just really think about when it would be a good time.


----------



## mrsklamc

I agree with Christine. The surgery itself was not bad to recover from.


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## branv

Thank you so so much for your insight. I actually had this instinct last year when going through the suspicious nodule freak out. Like, get it out as soon as I have this baby! I just didn't see why, if my body was going to attack the thing the rest of my life, why i would go through that. But my ENT was very cautious and...well...the internet *cough* sort of gave me the impression that life would be hell on earth without my thyroid. I suppose the answer is you are dealing with problems either way, just go with the least risky. Sigh.

I had hoped to wait until DS was weaned from nursing onto regular milk at a year before having this done. So four months or so. We don't have family or friends nearby who can help, so I'd go in alone for surgery while DH stayed at home to care for DS. Do you think it will be awful to have to rely entirely on nursing staff while I'm there? I'm hoping it won't be a hard recovery. I did very very well after my csection, would be nice if things went just as smoothly physically with this. Though, well obviously totally different surgery 

Thank you again.


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## SingingMom

branv said:


> Thank you so so much for your insight. I actually had this instinct last year when going through the suspicious nodule freak out. Like, get it out as soon as I have this baby! I just didn't see why, if my body was going to attack the thing the rest of my life, why i would go through that. But my ENT was very cautious and...well...the internet *cough* sort of gave me the impression that life would be hell on earth without my thyroid. I suppose the answer is you are dealing with problems either way, just go with the least risky. Sigh.  I had hoped to wait until DS was weaned from nursing onto regular milk at a year before having this done. So four months or so. We don't have family or friends nearby who can help, so I'd go in alone for surgery while DH stayed at home to care for DS. Do you think it will be awful to have to rely entirely on nursing staff while I'm there? I'm hoping it won't be a hard recovery. I did very very well after my csection, would be nice if things went just as smoothly physically with this. Though, well obviously totally different surgery   Thank you again.



Each person is different, but I will say from MY experience, my csection and recovery was 10x worse than my thyroidectomy!!  

I was in the hospital for two nights. Not sure they even do that anymore. The worst part that I thought was the parade of people taking blood. I was bruised up and down my arms like I was in a bad street fight!  But that always happens when they take blood.  I bruise terribly. But, the actual surgery and recovery weren't bad, and I had never been in the hospital before that. 

Having my darling little girl, however, was a story I rarely tell people unless asked, because if all experiences were like mine, there probably wouldn't be any more babies on the world. Lolol. Just kidding. She was worth every moment of it, but 21 years later, it still is in my mind!   Lol

"SingingMom" ....Sent from my iPad using DISBoards


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## Christine

branv said:


> Thank you so so much for your insight. I actually had this instinct last year when going through the suspicious nodule freak out. Like, get it out as soon as I have this baby! I just didn't see why, if my body was going to attack the thing the rest of my life, why i would go through that. But my ENT was very cautious and...well...the internet *cough* sort of gave me the impression that life would be hell on earth without my thyroid. I suppose the answer is you are dealing with problems either way, just go with the least risky. Sigh.
> 
> I had hoped to wait until DS was weaned from nursing onto regular milk at a year before having this done. So four months or so. We don't have family or friends nearby who can help, so I'd go in alone for surgery while DH stayed at home to care for DS. Do you think it will be awful to have to rely entirely on nursing staff while I'm there? I'm hoping it won't be a hard recovery. I did very very well after my csection, would be nice if things went just as smoothly physically with this. Though, well obviously totally different surgery
> 
> Thank you again.



My friend had her surgery this past August.  It was at NOON on a Wednesday and she was checking out by 1PM the next day.  Her family waited while she had surgery and got into her room.  Then she just wanted to be alone and she sent them home and told them not to come back until she was being released.  She did just fine, she felt fine, and I was surprised at how well she did (she was 48 at the time of the surgery).  I think you are fine to rely on nursing staff.  I do think that they will want someone at the hospital while you are in surgery so is there anybody you have that can take care of your son for the day.  Most likely your surgery will be in the morning and your husband could leave before dinner time.


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## mrsklamc

My mom is saying she has 21% nodules. She gets confused sometimes, has anyone received a report like this? They told her the nodules are neither hot nor cold, so they are just going to do it again later.


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## luvmarypoppins

branv - I would be wanting to get it out too because you will always deal with all the uncertainty, med adjustments and testing.

I think its true what Christine said, I would rather do it when the baby is less mobile. Probably the only thing you would have to worry about is having him pull on your neck or having him butt his head into your neck etc.

I know what you mean about watching the baby. When we moved to Texas I was up the same creek. I did find a lot of nice girls at church. I didnt even eave my sons at mothers day out until they were at least a year old.  My mom  came when we were having #3 but my sister suddenly collapsed (she later died) and I had to ask one of the girls at church to watch my boys because my mom had to head back on the plane etc. But mine were almost 2 and 4 by then, so a little older. I am sure eventually you will find someone who you will be comfortable with and trust etc. 

Micayla - never heard those percentages used before. Maybe your mom is a little confused with information? Also I am sure you are anxiously awaiting your blood test results. 

I am exhausted but I did alot  this week end for sure. So that is probably why. 
Anyone go see the movie? If you did what did you think etc? Tell me if you think I could handle it, especially if it deals with the dying part. That is dh biggest concern. 

Christine - what are you reading? I am almost done with the western. Good, put me out of my misery. I am still going to give it 4 stars because she described the setting etc. so well (texas ranch). and I just won 2 more books from goodreads. Lots of summer reading for me!!


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## Christine

luvmarypoppins said:


> Anyone go see the movie? If you did what did you think etc? Tell me if you think I could handle it, especially if it deals with the dying part. That is dh biggest concern.
> 
> Christine - what are you reading? I am almost done with the western. Good, put me out of my misery. I am still going to give it 4 stars because she described the setting etc. so well (texas ranch). and I just won 2 more books from goodreads. Lots of summer reading for me!!



I'm going to go see the movie this weekend.  Having read the book, I'm prepared.  One thing to keep in mind: this isn't really a story about thyroid cancer.  It's a story about youth, love, and, yes, the unfairness of it all.  At least with the book, I never thought "this is a story about thyroid cancer and OMG I have it and this could happen to me."  It sort of along the lines of Brian's Song, Stepmom, Terms of Endearment--just really the injustice of it all and the relationships that we form with our loved ones.

I can't know how the movie will portray all this but I have to say that it was the best book I read of 2013 and it's a wonderful book to read.  I cried at the end (I hardly ever cry) but it wasn't over the thyroid cancer issue.  

As for what I'm reading now:  China Dolls, by Lisa See.  I really enjoy all of her books which deal with Chinese Americans and their plight in the U.S. around the time of the WW2.  Not a subject I would normally care about, but she tells a great story.


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## angwill

MrsK, I never heard of percentages being used for nodules either???  I try and write down what is said when I hear from the doctors of I remember stuff differently than what was said.  

I began reading The Fault in Our Stars the end of last week.  It has me sucked in.  As Christine stated it is very much a love story but also the effects of cancer on everyone involved.  When the main character talks about how she feels about herself there are times I have to stop and put the book down or I will be crying like a baby. I rarely cry and don't like when I do. I really think the movie will be like the book and more based on the love story and acceptance.


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## branv

Thanks again everyone. I think my brain has finally accepted this is going to happen. Just had to put on my big girl bloomers and get over whining about it 

I do wish there were someone but because of distance, logistics and *ahem* family members who would cause more problems than assistance (don't we all have some of those), it really is just us. That being said, DH has a lot of vacation stored up, so at least he can take that time off to be SAHD afterwards. Sheesh. Sure would rather be using that vacation for Disney! I'm afraid we're already in the mobile stage, crawling and creeping like mad, at 8.5 mos he doesn't seem far from walking 

Singingmom, I shudder to imagine your story. Though you are a thoughtful rarity in not telling your story -- when I was pregnant, moms came out of the woodwork to share their horror stories, lol!

As silly as it sounds, another reason I'm think of waiting until the end of September is that part of me wants to be sure I have a voice to sing Happy Birthday at his year birthday.  I know voice loss is rare, but my father lost his voice to lung surgery, and 20 years later has just a thin gravely voice still.

I simply can't read the Fault book bc I cannot handle even beautiful but sad stories anymore. I made the mistake of reading The Book Thief in the thick of postpartum hormones and I think I cried every 20 pages. Though to be fair, I can't even stand to read the news anymore.


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## mrsklamc

Bloodwork was clean! Hooray!


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## luvmarypoppins

Micayla - I am so happy for you  Good news to celebrate for sure! Hope your dh enjoys his first fathers day too.

Well my ds is going for the 2nd opinion for his hip tomm. I guess we will be looking into the state ins. for him soon. My head spins. 

I am still dealing with the tiredness. I know before that the endo said, oh you are always tired etc. So why should I have to feel this way? If the tsh is normal again, then I dont know what her game plan will be etc.


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## angwill

branv said:


> Thanks again everyone. I think my brain has finally accepted this is going to happen. Just had to put on my big girl bloomers and get over whining about it
> 
> I do wish there were someone but because of distance, logistics and *ahem* family members who would cause more problems than assistance (don't we all have some of those), it really is just us. That being said, DH has a lot of vacation stored up, so at least he can take that time off to be SAHD afterwards. Sheesh. Sure would rather be using that vacation for Disney! I'm afraid we're already in the mobile stage, crawling and creeping like mad, at 8.5 mos he doesn't seem far from walking
> 
> Singingmom, I shudder to imagine your story. Though you are a thoughtful rarity in not telling your story -- when I was pregnant, moms came out of the woodwork to share their horror stories, lol!
> 
> As silly as it sounds, another reason I'm think of waiting until the end of September is that part of me wants to be sure I have a voice to sing Happy Birthday at his year birthday.  I know voice loss is rare, but my father lost his voice to lung surgery, and 20 years later has just a thin gravely voice still.
> 
> I simply can't read the Fault book bc I cannot handle even beautiful but sad stories anymore. I made the mistake of reading The Book Thief in the thick of postpartum hormones and I think I cried every 20 pages. Though to be fair, I can't even stand to read the news anymore.



Such decisions are not easy to make.  I wish there was someone other than a magic 8 ball that could tell us what to do.  

I have never had any family to help me raise my child either and it stinks.  My husband was always out of state with work too so DS got to go to all my doctors appointments sitting in the office with me or in a chair outside if need be.  You just have to do what you have to do. Thank God I didn't have to go through all the cancer stuff till my son was a teen.  Although he was no piece of cake then either. lol Unfortunately, he got in a car accident and totaled his 2 week old car just over a week after my surgery, begining of hypohell, so I had to drive him back and forth to work till we could find another.  There is always something.  My Disney vacations are done for God knows how long too since our medical deductible is $6000 I get to spend my vacation money on that.  You are not alone.  

I actually worked in an OB department and only saw one really bad situation with a birth in the year I worked that department.  I think the horror stories are kind of rare from my experience but when they happen they are awful.  

If it helps hearing a good story about the voice.  I was told after surgery I would have the worst sore throat of my life and not to talk for a day and softly for a couple weeks.  I never had even a scratch in my throat with a pain level of 0.  It felt the same as before I went in and so did my voice.  I started talking right after surgery and never shut up since. lol My friend, husband, and son kept telling me to be quit like the doctor said.  Yet they kept asking me questions and talking to me. lol May your surgery go as well as mine.  

MrsK,
That is wonderful news.  So glad your bloodwork is clean and may it stay that way forever.


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## luvmarypoppins

Has anyone heard of the PTEN gene testing?

I just read a little article and it said that men with the PTEN gene are 7 times more likely to get a thy ca recurrence.

Um, I am really worried about this because they said my nice little aggressive thy ca is usually found in men.

Well I am going t mention it to the endo at my visit and see if she has heard of it etc.

And in other news. Ds3 took the nursing boards sat. He actually did it so if he fails he can do it again in 45 days so he could stay in the accelerated online class instead of being decelerated to a 2 year class. He will know the results tomm.  think. 

And in other news I dont want to elaborate. Lets just say I dont handle stress well and had ds take my blood pressure. It was 150/100, yikes! Never a dull moment thats for sure.

Micayla - be thankful for diapers right now, just sayin!


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## 3DisneyBuggs

So more than a month after my FNA I have the molecular genetic results. Thankfully they were all negative. My endo did say if I wasn't comfortable with the 90 to 95 % sensitivity  I can have surgery. I may decide to remove it but  for right now, I want to hold onto my thyroid. Thanks and wishing all good health.


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## angwill

3DisneyBuggs, I am glad you got good results and hope you can hold on to your thyroid as long as possible.  

LMP,  What form of thyca were you diagnosed with.  Just curious because my form is very agressive as well.  

Good to hear about your DS and taking his nursing test.  I hope he passes the first time.  

Ang


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## luvmarypoppins

3disneybuggs- so glad you got a good report

ang - I have papillary with columnar cell variant


And in other breaking news...ds3 passed his nursing boards Proud mom here for sure

I am going t call today to schedule the sono/ultrasound. I was suppose to be on a 6th month schedule but with the harsh winter, ds breaking his foot etc. it never got done, so I will get an appt. before we teach at the vbs.

What is everyones sono/ultrasound schedule?


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## SingingMom

luvmarypoppins said:


> 3disneybuggs- so glad you got a good report  ang - I have papillary with columnar cell variant  And in other breaking news...ds3 passed his nursing boards Proud mom here for sure  I am going t call today to schedule the sono/ultrasound. I was suppose to be on a 6th month schedule but with the harsh winter, ds breaking his foot etc. it never got done, so I will get an appt. before we teach at the vbs.  What is everyones sono/ultrasound schedule?




Warmest congratulations to your son on passing his boards!  Great accomplishment!


You just reminded me I have to go for my ultrasound before my September appointment!   My endo does one every other year or so. Never had one with the old endo!

Last day of classes for me. Friday is last liturgy. Then I can pack for mother/daughter WDW trip!

"SingingMom" ....Sent from my iPad using DISBoards


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## angwill

LMP,
Thanks I had papillary tall cell variant that I was told was very aggressive as well.  I wondered if we had the same.  

Congratulations on your son passing the nursing boards, that is awesome.  I hear it is very hard to do the first time.  

Good luck with sonogram.  Right now I am on every 6 months for ultrasound till the next one then one per year with WBS.  I am going to do only one more WBS and then tell endo that unless the ultrasound and cancer tumor marker comes back off no more WBS.  All that thyrogen and tracer radiation can not be good on the body and after the last thyrogen shots I had the worst monthly of my life.  My body definitely did not like the thyrogen.  

Singing mom, Enjoy your mother daughter trip.


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## luvmarypoppins

ang - my rad onc said - 2 clean scans and that was it. I agree about all the stuff in your body.

Singing Mom - I hope you have a wonderful trip with your dd

Christine - reading anything good? I just finished another amish book that I won from a blog and now I am reading a love inspired romance that I won from Goodreads. After that is another book from Goodreads. I think it was an author Ophrah likes. I dont know. 

Well I got a call from the onc office confirming my visit next week.  I told them that the endo said I didnt have to go to the onc. anymore because all my cancer numbers were good etc. So they cancelled it. But I was upset because the endo said she would take care of this. I see her typing a million miles a minute at my last visit so I thought that was one of the things she was typing. Its all electronic records there. That is why I am also going over each script one by one etc. Lesson learned from last time and all my problems with refills etc.

I just made the ultrasound for June 30, the first they had. I want to get it over with early before my aug. endo visit as my dh is going away for 2 weeks to China and I will have to deal with all the 3 adult ds at once. Gheesh! Then I also have to do my teaching prep work and that is consuming me right now etc. I hopefully might decorate the classroom a little next week. We shall see. 

Hope everyone is doing well. Check in when you can.


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## funkydelia

Hi everyone I hope you don't mind me crashing. 

I am in the middle of the 'biopsy for a suspicious thyroid' lump roller coaster. Just wishing I had a FP+ for it as it's taking ages!

Booked 14 nights at Wilderness Lodge for Oct 2015 and the planning and researching for the trip is really helping me to focus. 

I'm in Scotland and well supported by a great (free) national health service. 

Just wanted to say hi


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## Christine

funkydelia said:


> Hi everyone I hope you don't mind me crashing.
> 
> I am in the middle of the 'biopsy for a suspicious thyroid' lump roller coaster. Just wishing I had a FP+ for it as it's taking ages!
> 
> Booked 14 nights at Wilderness Lodge for Oct 2015 and the planning and researching for the trip is really helping me to focus.
> 
> I'm in Scotland and well supported by a great (free) national health service.
> 
> Just wanted to say hi


----------



## angwill

LMP,  Thanks for the info about your endos thoughts on the scans.  It makes me feel better about my own decision.  My endo leaves a lot to be desired.  He is more into the diabetes end of his practice.  

FunkyDelia,
Welcome and I wish you patience while waiting your results.  I know where I get tests done if I don't hear back right away it means there is nothing wrong.  They have always called me within a day of my results when they weren not good and I can wait forever if they are good. lol  

Enjoy your trip planning I bet it helps keep your mind off things.  

These last couple years I wish I lived where there is universal healthcare.  I have medical bills and health insurance payments coming out of my butt and everyone wants their piece of the pie even if you don't have any pie to give. lol


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## luvmarypoppins

Funkydelia - I hope you have good test results!

Well tomm. is suppose to be my sono, but ds scheduled some work hours and said I didnt tell him etc, but I did. So hopefully this works out and I forgot the time so I will call them in the morning. 

We had the big garage sale yest. I am exhausted. We really didnt make too much money and at least we are getting rid of alot of stuff - trash and donate. 

I need a nap for sure!

Christine - saw your comment on the other thread. What type of engineering is your ds doing? Mine just did a general one that you learn about all types etc. I dont know where his future will lead him for sure. 

Hope everyone is doing well. Check in when you can.


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## Christine

luvmarypoppins said:


> Christine - saw your comment on the other thread. What type of engineering is your ds doing? Mine just did a general one that you learn about all types etc. I dont know where his future will lead him for sure.



Mine is also doing a general engineering degree.  The school he attends is in its "infancy" as far as engineering.  They have only had the program for about 6 years now with about 400 students at any given time.  It is growing.  I'm sure one day, they will segment off into specialities, especially since the major is so popular right now in that school.


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## luvmarypoppins

Well the ultrasound/sono is over. I got my usual girl who is nice. I asked her when my last one was because honestly I didnt remember. She said last July, so I missed the 6 month one.

My endo said she would be happy with a yearly one, but I said no every six months etc. 

They didnt ask me to stay for any additional pictures so I am gonna go with the thought that all is well in my little cancer world for now, but of course you just never know and the blood test will tell the tale for sure.


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## SingingMom

luvmarypoppins said:


> Well the ultrasound/sono is over. I got my usual girl who is nice. I asked her when my last one was because honestly I didnt remember. She said last July, so I missed the 6 month one.  My endo said she would be happy with a yearly one, but I said no every six months etc.  They didnt ask me to stay for any additional pictures so I am gonna go with the thought that all is well in my little cancer world for now, but of course you just never know and the blood test will tell the tale for sure.




Prayers that all IS well in your world! 

I need to make my US appointment! 

Packing this week and getting things settled for our mother-daughter trip!  Poor hubby has to work, but is very supportive of us going! He is liking forward to Aulani in August!

Next Tuesday we leave on a 6am flight to Disney!!!

"SingingMom" ....Sent from my iPad using DISBoards


----------



## funkydelia

I have a needle biopsy in the morning and I'm actually really worried about it but I haven't told anyone it's bothering me. I'm just obsessing about Disney to take my mind off it! 

I've never had anything done before but have had hshimotos for about 18years. On a huge dose of levothyroxine but have a big lump on the right hand side of my thyroid.


----------



## Christine

funkydelia said:


> I have a needle biopsy in the morning and I'm actually really worried about it but I haven't told anyone it's bothering me. I'm just obsessing about Disney to take my mind off it!
> 
> I've never had anything done before but have had hshimotos for about 18years. On a huge dose of levothyroxine but have a big lump on the right hand side of my thyroid.



Everyone freaks out about the needle biopsy.  It's really not that bad.  You'll be okay--it is mainly anticipatory anxiety.  After it's over you'll think "why did I get so worked up about that."


----------



## angwill

funkydelia said:


> I have a needle biopsy in the morning and I'm actually really worried about it but I haven't told anyone it's bothering me. I'm just obsessing about Disney to take my mind off it!
> 
> I've never had anything done before but have had hshimotos for about 18years. On a huge dose of levothyroxine but have a big lump on the right hand side of my thyroid.



Christine is so right.  I was so worried about my needle biopsy and it was such a relief to just have it over with.  It really was not bad at all for me.  Keep thinking Disney.

I too have been hypothyroid for about 20 years with hashimotos and have been on a very high dose of levothyroxine.  My big lump was on the right had side of my thyroid too.  Good luck and let us know the results we will be there for you when you need us.  

Ang


----------



## angwill

luvmarypoppins said:


> Well the ultrasound/sono is over. I got my usual girl who is nice. I asked her when my last one was because honestly I didnt remember. She said last July, so I missed the 6 month one.
> 
> My endo said she would be happy with a yearly one, but I said no every six months etc.
> 
> They didnt ask me to stay for any additional pictures so I am gonna go with the thought that all is well in my little cancer world for now, but of course you just never know and the blood test will tell the tale for sure.



So glad you got that ultrasound over.  Glad there were no additional pictures needed either.  Good luck with the blood work too.


----------



## funkydelia

Glad everything went well with the sono. 

I'd never had one so wasn't sure what to expect. Definitely wasn't ready for the needle. Ouch!! Will need to wait 2wks for the results.


----------



## luvmarypoppins

Funkydelia - glad that is over with! Waiting is the hardest too. But you can always do lots of disney food research for your trip to pass the time


----------



## SingingMom

funkydelia said:


> Glad everything went well with the sono.  I'd never had one so wasn't sure what to expect. Definitely wasn't ready for the needle. Ouch!! Will need to wait 2wks for the results.



The needle biopsy is different for each person.  ;-). My issue was the"personal space" component. Lol. Hate the eye doctor and dentist, too.  Get out of my FACE!  

Hope all are feeling well this summer!!!   DD20 and I leave for our mother-daughter Disney trip on Tuesday!!

"SingingMom" ....Sent from my iPad using DISBoards


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## luvmarypoppins

Well I have been having some strange symptoms that I dont know whether or not I should be worried about.

Most worrisome to me is that I keep getting bruising for no reason whatsoever. I have one on my leg but that is from hitting into something. Others I have on my arms and my thigh. I counted them altogether and there were 12! I showed my ds.

I know before the drs. mentioned something about a clotting problem, bone marrow biopsy etc. 

I have my blood work to get done, Its not to cover these symptoms just the endos general 6 month stuff but I think she has a panel ordered to look for general stuff. I am probably going to get it done a little early than I should next week so that if there is some issue she might be made aware of it etc. if she is not on vacation. I dont go to her until Aug. 4th I think but I am going to mention all these symptoms for sure. 

Also some nausea mostly in the morning. Lots of the wonderful hot flashes which is normal but getting worse at times it seems. 

The bruising really bothers me. (Emotionally not physically)

And in other news. 2 more days of teaching VBS. We have the largest group with 16 kids! 2 are leaving tomm. for vacation. 

Also today we got a new roof. What a job that was. Glad dh was home holding down the fort. Tomm. the gutters go on. After 20 years we needed a new one for sure. Our house needs a lot of TLC. Next big job is the driveway. Probably in Aug. Dh leaves Fri for his wonderful (not) 2 weeks in China. I plan on doing some more decluttering. 

Check in when you can.


----------



## angwill

luvmarypoppins said:


> Well I have been having some strange symptoms that I dont know whether or not I should be worried about.
> 
> Most worrisome to me is that I keep getting bruising for no reason whatsoever. I have one on my leg but that is from hitting into something. Others I have on my arms and my thigh. I counted them altogether and there were 12! I showed my ds.
> 
> I know before the drs. mentioned something about a clotting problem, bone marrow biopsy etc.
> 
> I have my blood work to get done, Its not to cover these symptoms just the endos general 6 month stuff but I think she has a panel ordered to look for general stuff. I am probably going to get it done a little early than I should next week so that if there is some issue she might be made aware of it etc. if she is not on vacation. I dont go to her until Aug. 4th I think but I am going to mention all these symptoms for sure.
> 
> Also some nausea mostly in the morning. Lots of the wonderful hot flashes which is normal but getting worse at times it seems.
> 
> The bruising really bothers me. (Emotionally not physically)
> 
> And in other news. 2 more days of teaching VBS. We have the largest group with 16 kids! 2 are leaving tomm. for vacation.
> 
> Also today we got a new roof. What a job that was. Glad dh was home holding down the fort. Tomm. the gutters go on. After 20 years we needed a new one for sure. Our house needs a lot of TLC. Next big job is the driveway. Probably in Aug. Dh leaves Fri for his wonderful (not) 2 weeks in China. I plan on doing some more decluttering.
> 
> Check in when you can.



I would be worried about all the bruises too so I don't blame you.  Hopefully it is nothing serious for you.  I am sure your doctor will call you right away if it is something important.  

VBS sounds fun and tiring. lol  

We got a new roof a few years back and it looks so much better than it did.  I am sorry your DH is leaving yet again.  My husband traveled for work our whole marriage till last year.  So I know how hard it can be.  Hopefully decluttering will keep your mind off things for the weeks he is gone.  

You take care of yourself.


----------



## funkydelia

The bruising everywhere was one of the reasons (a along with chronic fatigue) that prompted my dr to send me for biopsy. 
I'm on 300mcg Levothyroxine and it's not working! 
Could be a symptom of reduced uptake/conversion?

Hoe you are feeling better soon.


----------



## branv

I also had trouble with bruising.  I mentioned it to my OB during my first well woman exam post-baby and she just laughed at me. Said it was bc I had an active child. But this was crazy. Like over a dozen on constant rotation, and my husband sure didn't have it like this, nor the women in my mom's group. Regular blood panel only showed Vitamin D deficiency. A few months later my thyroid panel was done and that's when we saw how off it all was. Meds upped, baby even more active yet surprise, no more bruising. 

I'm so sorry you're going through this worry. Hoping you find it is something as simple as a med adjustment.


----------



## Christine

I had easy bruising when my iron was low.  I also, generally, bruise easy.  Fair skin, thin skin and it's not getting better with age!  I find that I go through times where I seem like I have a lot of bruises and I don't know how I got them, and other times I get none!

My house will be 20 years old later this year.  We are in the middle of getting roof quotes, so I feel your pain!!


----------



## luvmarypoppins

Well I went and got the blood work today since ds3 had to get some too. I always do not enjoy the waiting time. 

I am exhausted from teaching. I may take a nap later. 

Dh is on his way to China. I will sure miss him. Its going to be a long 2 weeks.

We are getting a driveway estimate tues. I think this will be expensive. I think the tree roots are under the driveway etc. Also we want them to do the front entrance. This is really getting to be the money pit. Last time stuff was done was over 20 years ago.

Micayla - We need an update on your precious little guy. Bet he is growing and oh so cute!


----------



## luvmarypoppins

This thread is quiet.

Funkydelia - did you get the results back of your fna? Wishing you all the best

Remember I told you about my dh friend who was having the thyroidectomy because it was pressing on his trachea too. It wasnt cancerous they said. Well I do know he had the surgery and it was successful but I dont know any other details. I am sure they will biopsy it. 

Well I feel like I am in a nightmare right now. Ds3 went to get his physical stuff for nursing school and his blood pressure keeps going up. They said one of the reasons could be an adrenal tumor. Yup, the same tumor they thought I had and cancelled my thy ca surgery the lst time. So he has to do the 24 hour urine to check for the c stuff, which I think is leading toward medullary thy ca etc. 

Tomm. he is having a stress test on the treadmill because they want to see his adrenaline levels etc. Those would be a sign of the tumor. This dr. he went to, a cardiologist, has said he has only seen one case of it in 10 years. He said if its not this then they will have to check what is happening to him, they said maybe stress? I sure hope that is all it is for sure. I am going to be doing a lot of praying so if you have any spare prayers we would appreciate them for sure. 

The driveway guy came and what a big project this will be. Kind of expected it. Our red maple roots are tearing up the driveway and walkway. It has to go along with our bushes. They have to replace so much stuff and wowsa is it going to be expensive. Probably 2 disney trips for dh and I at least. 

I asked ds if he wanted me to go with him tomm and he said he didnt care. I think I would feel better if I did etc. 

Check in when you can.


----------



## SingingMom

luvmarypoppins said:


> This thread is quiet.  Funkydelia - did you get the results back of your fna? Wishing you all the best  Remember I told you about my dh friend who was having the thyroidectomy because it was pressing on his trachea too. It wasnt cancerous they said. Well I do know he had the surgery and it was successful but I dont know any other details. I am sure they will biopsy it.  Well I feel like I am in a nightmare right now. Ds3 went to get his physical stuff for nursing school and his blood pressure keeps going up. They said one of the reasons could be an adrenal tumor. Yup, the same tumor they thought I had and cancelled my thy ca surgery the lst time. So he has to do the 24 hour urine to check for the c stuff, which I think is leading toward medullary thy ca etc.  Tomm. he is having a stress test on the treadmill because they want to see his adrenaline levels etc. Those would be a sign of the tumor. This dr. he went to, a cardiologist, has said he has only seen one case of it in 10 years. He said if its not this then they will have to check what is happening to him, they said maybe stress? I sure hope that is all it is for sure. I am going to be doing a lot of praying so if you have any spare prayers we would appreciate them for sure.  The driveway guy came and what a big project this will be. Kind of expected it. Our red maple roots are tearing up the driveway and walkway. It has to go along with our bushes. They have to replace so much stuff and wowsa is it going to be expensive. Probably 2 disney trips for dh and I at least.  I asked ds if he wanted me to go with him tomm and he said he didnt care. I think I would feel better if I did etc.  Check in when you can.



So sorry to hear of your son's issues. How old us he?  Will keep all of you in my prayers. 

DD20 & I had a lovely WDW trip, albeit a HOT one!!  I just poured sweat!  It was really nice spending time just the two of us. Poor DH had to stay home & work (to pay for his girls to play!) but the three of us are going to Aulani next month!  Should be a beautiful trip!

"SingingMom" ....Sent from my iPad using DISBoards


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## luvmarypoppins

Singing Mom - I am glad you had a great trip with your dd. You know I always like to hear about food. Did you have any good meals or was it just too hot to eat? I know when we went in the summer I always felt like it was too hot to eat a lot etc. 

Christine - reading anything good? I am stuck on a book I started a month ago. I hopefully will finish tonight. Its a contemporary love story, One from the Love Inspired collection. I won it from Goodreads.

Well I have only had 1 bruise so far that I can see, so that is good. 

I am taking a break from my clothes decluttering. Its the last day and I am on bag 7 I think. I am getting a little weary of this. I made a huge dent in it, so I am happy. 

We are getting 2 more driveway estimates on fri and sat.


----------



## SingingMom

luvmarypoppins said:


> Singing Mom - I am glad you had a great trip with your dd. You know I always like to hear about food. Did you have any good meals or was it just too hot to eat? I know when we went in the summer I always felt like it was too hot to eat a lot etc.  Christine - reading anything good? I am stuck on a book I started a month ago. I hopefully will finish tonight. Its a contemporary love story, One from the Love Inspired collection. I won it from Goodreads.  Well I have only had 1 bruise so far that I can see, so that is good.  I am taking a break from my clothes decluttering. Its the last day and I am on bag 7 I think. I am getting a little weary of this. I made a huge dent in it, so I am happy.  We are getting 2 more driveway estimates on fri and sat.




It's funny about food & Disney - since we live near the best restaurants in the country  , we don't usually get too excited about dining reservations. Lol
But, we did enjoy a meal at Monsuier Paul in France, Tutto Gusto in Italy, Be Our Guest for lunch, Brown Derby outdoor lounge, and the most delicious prime rib sliders at the lounge at Port Orleans Riverside.  We did the Frozen Premium Package and enjoyed the dessert party before the fireworks. 

Just made reservations for our January trip.  Taking our friends to California Grill after the marathon, Be Our Guest, Monsuier Paul so DH can try it, and the Wishes Dessert party.  We'll be there for DH birthday and he requested Rose & Crown.  

Now deciding if we want to book excursions for Aulani for next month, or wait until we arrive.  

I applaud you for the de cluttering!  I SHOULD be doing exactly that - instead I am planning vacations, sitting poolside in the backyard, and going into NYC tomorrow to see Jersey Boys on Broadway!   I must get myself motivated!

"SingingMom" ....Sent from my iPad using DISBoards


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## angwill

SingingMom,  Glad you had such a good trip minus the heat.  I am like you and could care less about Disney food.  I do like the atmosphere of some of the restaurants there though.  

LMP,  So sorry to hear about your son and hope all turns out well with him.  

FunkyDeliah,  How did your biopsy turn out?  

Well I saw my endocrinologist again and told him about my having no energy, hair loss, dry skin etc.  He cut back on my Levothyroxine and added Generic Cytomel which I have read really helps some people.  Anyone here taking it and have any stories on how it effected them?  

I also started using a cpap machine for sleep apnea a couple weeks ago.  That has helped with the energy levels some, thankfully.  It has really helped my sinus and allergy issues which I didn't even think about but am so happy for the improvement.  

Hope everyones summer is going well.  

Ang


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## funkydelia

No results yet (they prob have them but I don't know who to call to get them!) 
I'm feeling really crappy though, don't think meds are working at all. Have more blood tests next week. 

I'm actually looking forward to restaurants at Disney. Eating out here (Scotland) is expensive and we have been saving for disney for so long that I'm looking forward to having a prepaid DxDP and eating whatever I want for two weeks!

Jealous of your broadway trip. We went to ny in 2002 and I loved it!


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## funkydelia

Angwil: my DH has had a CPAP for nearly 5yrs now and it's made a huge difference to both our lives! Good luck with it x


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## angwill

funkydelia said:


> No results yet (they prob have them but I don't know who to call to get them!)
> I'm feeling really crappy though, don't think meds are working at all. Have more blood tests next week.
> 
> I'm actually looking forward to restaurants at Disney. Eating out here (Scotland) is expensive and we have been saving for disney for so long that I'm looking forward to having a prepaid DxDP and eating whatever I want for two weeks!
> 
> Jealous of your broadway trip. We went to ny in 2002 and I loved it!



I always figure if I don't get a call withing a day or two it is good news but don't wait call your doctor.  Are you seeing a general practitioner or an endocrinologist?  I also signed up online with my hospital and doctors to get my results online and I can print results too.  Good luck with the bloodwork and meds.  I hope they help regulate you fast.  

For me being in Illinois eating at Disney is more expensive. lol  I can see why it would be a treat and something to look forward too for you though.  The disney dining plan and eating for free is fun.   I looked forward to the different experiences like Ohana and Cinderellas castle etc.  

Good luck on the test results keep us posted.

Ang


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## SingingMom

funkydelia said:


> No results yet (they prob have them but I don't know who to call to get them!) I'm feeling really crappy though, don't think meds are working at all. Have more blood tests next week.  I'm actually looking forward to restaurants at Disney. Eating out here (Scotland) is expensive and we have been saving for disney for so long that I'm looking forward to having a prepaid DxDP and eating whatever I want for two weeks!  Jealous of your broadway trip. We went to ny in 2002 and I loved it!



Hope you feel better soon!  Crappy is  unacceptable!  ;-)


Had a GREAT day in NYC today with dd20. Living 40 minutes from the city is a plus!   Jersey Boys was excellent - better than the movie, which we did enjoy.  Dd got student rush tickets, so we only paid $27 each for rear orchestra!  We ate at a darling French restaurant we happened upon. Outdoor seating - felt like a cafe in Paris!  

Dd wa nts to work for Disney after college graduation next May and DH wants to retire in Florida eventually.  I will miss my Manhattan fun!

"SingingMom" ....Sent from my iPad using DISBoards


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## luvmarypoppins

funkydelia - I would call to see about your results too. Hope you get good results. Hmm, is no news good news where you live?? I sure hope so!

Singing Mom - glad you liked Jersey Boys. My cousin went and loved it he said. I hear you about retiring to Florida. The taxes here in NY are crazy. We would like to retire some place cheaper too. Or at least be snowbirds.

ang - Cant comment on the cytomel but hope it helps you to feel better. Also hope the cpap machine helps you feel better too. My cousin uses it and so does a friend of ours. They say it helps. Any luck with your ds and a job? Both of mine are sending out resumes and nothing! Not good. I even look online to see if I see something for them etc. Nothing they qualify for or would like etc. I dont know how people say the economy is getting better. My one ds said his friend sends out 20 resumes a week for accounting and sometimes he may get a call or an interview, but that is it. 

I think my endo visit is a week from Mon I have to check and see. I am doing my dh countdown. 4 more days.


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## angwill

LMP,  DH is currently working but is considered a temporary worker.  He will be fired for a week and rehired again in the next couple weeks.  It is a union thing.  He keeps hoping they hire him permanent but there are people who have been there 3 years as temporary.  We live in a rural area and I have been looking for a job for years.  I am lucky to even hear back from anyone let alone get an interview and lose out to someone else.  My son has been looking for about a year now and keeps getting temp jobs through an agency for a few days and weeks here and there.  It is interesting the places we will both send a resume to and he gets more interviews than I do. I guess it's age and everyone paying minimum wage thinking the younger group are more motivated at that pay level?  

Baritenor123,  I don't think changing from hypo to hyper on a day to day basis is possible but over months it is if she has graves disease.  I didn't have graves so I only know what I have read from others though.  I hope they are helping her stop the swinging of it.

Good luck at the endo.


----------



## luvmarypoppins

Well the endos office called me to verify my visit for next wed. Hmm, glad they did because I thought it was Mon.  The lady didnt say anything, so I am going to assume all is doing well, but you never know etc.

I got to talk to my dh today. Its great that he is actually in this country now.

Poor ds1. When he was looking online today for jobs, he sees his old job advertised. WTH??? and he said his boss refuses to give him a reference letter because its against company policy. Something sure is not right here. I feel really bad for my ds. I told him keep trying and dont give up etc.


----------



## luvmarypoppins

funkydelia - have you gotten your test results back? Wishing you all the best. 

Well my endo visit is later. I actually saw I have an old bruise on my hand that I can show her. So at least she knows what I am talking about. Sounds strange wishing you want a symptom etc. Sometimes I feel like the boy who cried wolf with these drs. when you say something and they always say oh that can never happen, thats strange etc. Unfortunately they see that things that are never suppose to happen always seem to with me. Guess unfortunately I have a well documented medical record for all the wrong reasons. 

Hope everyone is doing well and enjoying the summer. Check in when you can.


----------



## Christine

Had my endo visit on Monday and got my results this morning.

My TSH is at 0.3 even though I decreased my dose a bit last time.  So my TSH went lower (it was at 0.5) yet my Free T4 went way down.  That is really odd.

I did have my Vitamin D tested and my level was only at 20--not good!

My hematocrit seems to be on the lower side of normal, which is odd.  I had problems with that MANY years ago but I got it under control.  I wonder why it's slipping a bit.  Hard not to think the worst, like I've got bleeding somewhere.  Head in the sand...head in the sand...


----------



## luvmarypoppins

Christine - sorry you are dealing with all these issues. How do you feel with the tsh at 0.3?  Well it was good for you that it decreased from 0.5. My endo always wants it as close to zero as possible. And you decreased the dose of levo? Strange, yes.

What did the endo want you to do for the low vit d? Is over the counter supplementation sufficient. That would do nothing for me hence the script for the high vit d dose weekly.

Does your endo want to do any more testing about the hematocrit?

I hope you can get all these things straightened out so you can enjoy being you and be feeling your best. 

And speaking of endos too...here is my update from today....

My tsh was 0.1 and the tg was undetectable which she said is excellent, she is very happy and says I am right where she wants me. 

Sono was great - nothing seen

I lost 12 lbs since my last visit, yay!

She doesnt know why I am bruising

Told her about my horrible bone pain again from the reclast infusion. She said I will not be getting it next year due to all the bad side effects which of course no one else has etc. So the plan is to have the bone scan in Sept. The bone scan should show improvement over a 2 year period.(comparing it from 2 years ago). If there is no improvement then she is going to think about some kind of shot I would get twice a year. 

Biggest concern for her was she is questioning this one med I take for my gastric issues. She said long term it is know to produce carcinoid tumors in the gi tract and I have been taking it for such a high dose for so long etc. She wants me to see a gastro from the univ. hosp. So I have 2 names. Since I always have gi issues, I guess its good to get checked out. 

She was talking about only seeing me once a year and calling me for the 6 month results instead of coming in. I said no I would still like to come in for the 6 months. I didnt tell her she is the only dr I see since I dont go to a regular gp or ob/gyn etc. 

Whew, that is enough for one visit!


----------



## macraven

Christine said:


> Had my endo visit on Monday and got my results this morning.
> 
> My TSH is at 0.3 even though I decreased my dose a bit last time.  So my TSH went lower (it was at 0.5) yet my Free T4 went way down.  That is really odd.
> 
> I did have my Vitamin D tested and my level was only at 20--not good!
> 
> My hematocrit seems to be on the lower side of normal, which is odd.  I had problems with that MANY years ago but I got it under control.  I wonder why it's slipping a bit.  Hard not to think the worst, like I've got bleeding somewhere.  Head in the sand...head in the sand...



did your endo put you on ergo for the low Vitamin D level?
i have hasimoto for over 20 years, really haven't been able to get to the levels that would be best for me.

i changed endo this year and she ran the test for vitamin D.

my test came back with a level of 7 for the Vit. D.
started taking 50,000 iu weekly and will retest regularly.

endo told me the hypothyrodism and low levels of vit D go hand in hand.


----------



## luvmarypoppins

Anyone see the little article on the Yahoo news today that low vitamin d levels are associated with a 50% more chance of developing dementia and alzheimers?

I already have a lot of memory problems at times. More so when tired or stressed etc.


----------



## Christine

> How do you feel with the tsh at 0.3?  Well it was good for you that it decreased from 0.5.



I feel okay.  What's really strange is that my TSH went lower but so did my T4.  



> What did the endo want you to do for the low vit d? Is over the counter supplementation sufficient. That would do nothing for me hence the script for the high vit d dose weekly.



Take 2000 mg Vit D.



> Does your endo want to do any more testing about the hematocrit?



Nope, just told me to take some iron, especially since it was in the normal range, he didn't seem too concerned.

Honestly, I asked for these additional tests.  I like the guy be he is solely focused on my thyroid issues and doesn't want to deal with anything more.




> Biggest concern for her was she is questioning this one med I take for my gastric issues. She said long term it is know to produce carcinoid tumors in the gi tract and I have been taking it for such a high dose for so long etc. She wants me to see a gastro from the univ. hosp. So I have 2 names. Since I always have gi issues, I guess its good to get checked out.



What medication is that?


----------



## Christine

macraven said:


> did your endo put you on ergo for the low Vitamin D level?
> i have hasimoto for over 20 years, really haven't been able to get to the levels that would be best for me.
> 
> i changed endo this year and she ran the test for vitamin D.
> 
> my test came back with a level of 7 for the Vit. D.
> started taking 50,000 iu weekly and will retest regularly.
> 
> endo told me the hypothyrodism and low levels of vit D go hand in hand.



He just told me to take 2000 mg every day.  He told me they only do the prescription for really low levels.  I guess 20 doesn't quite hit that mark but, wow, 7!!


----------



## Christine

luvmarypoppins said:


> Anyone see the little article on the Yahoo news today that low vitamin d levels are associated with a 50% more chance of developing dementia and alzheimers?
> 
> I already have a lot of memory problems at times. More so when tired or stressed etc.



Yes, it was also in today's Washington Post.  Levels below 25 increase your risk of Alzheimer's by 53%.  Great.


----------



## macraven

Christine said:


> He just told me to take 2000 mg every day.  He told me they only do the prescription for really low levels.  I guess 20 doesn't quite hit that mark but, wow, 7!!



the last time i checked, anything 30 to 20 was considered low,
under that was severe.

i guess some labs use different numbers in what is considerated severe.
mine was labeled extremely severe and had to go with the RX ergo.

maybe your endo feels if you get more sunlight, an over the counter vit d would be okay.

i came back from orlando and had the lab work drawn 3 weeks later and had the low number.

if you have the test ran again and are on the OTC vitamins, i hope your level does rise.


----------



## macraven

Christine said:


> Yes, it was also in today's Washington Post.  Levels below 25 increase your risk of Alzheimer's by 53%.  Great.



very scary.........


----------



## Christine

macraven said:


> the last time i checked, anything 30 to 20 was considered low,
> under that was severe.
> 
> i guess some labs use different numbers in what is considerated severe.
> mine was labeled extremely severe and had to go with the RX ergo.
> 
> maybe your endo feels if you get more sunlight, an over the counter vit d would be okay.
> 
> i came back from orlando and had the lab work drawn 3 weeks later and had the low number.
> 
> if you have the test ran again and are on the OTC vitamins, i hope your level does rise.



I think my level of 20 was considered "insufficiency."  Once you hit 19, you are "deficient."

What I am amazed about is the varying practices between doctors of what they will treat and what they won't.  I think there is no general consensus in the medical community right now of the correct amounts to use and when.  I have several friends who tested in teh "20 something" range with different doctors and they did not get the 50,000 IU treatment.  I only know one woman who has and her level was at 12.


----------



## branv

Interesting. I had a 20 for my vit D, and was told to take 4000 mg OTC.


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## angwill

Just looked up my vit D results.  Last year August I was 29 and told to take 2000mg OTC vit D 2x a day for total of 4000mg.  Then March this year I went up to 51 on the OTC.  Just thought I would throw that out there.  My memory seems to go crazy when my TSH has been high over the years.  I have had hypothyroid and hashimotos for about 20 years and last year was the first time my Vitamin D was low.  It sounds like I have been lucky.  I thought it was just low from having my thyroid taken out and losing a parathyroid.


----------



## macraven

angwill said:


> Just looked up my vit D results.  Last year August I was 29 and told to take 2000mg OTC vit D 2x a day for total of 4000mg.  Then March this year I went up to 51 on the OTC.  Just thought I would throw that out there.  My memory seems to go crazy when my TSH has been high over the years.  I have had hypothyroid and hashimotos for about 20 years and last year was the first time my Vitamin D was low.  It sounds like I have been lucky.  I thought it was just low from having my thyroid taken out and losing a parathyroid.



that is great your vit d increased up to 51.
my past docs never did run those tests for the vitamins.
i switched to another endo and pleased with her and how she handles my situation.

i am hoping that once i hit a higher level, my bruising will go away.
the leg cramps are miserable to have during the night and was told that will go away also when my vit d level rises.

my T3 and TSH are still out of range.
some times the tests are good and then, i have no idea why it happens, they go out of range.  this has gone on for years.........


----------



## luvmarypoppins

I feel like I am the only one who doesnt know what their vit d number is, lol. All she told me this time was - its perfect! So I still have to take the 50,000 iui script. 

My dh finally saw his friend. He said they only took out half his thyroid and are still deciding whether to give him synthroid or not.

Dh said his scar is so tiny, about 2 inches and you can only really see it if he actually bends his neck. The most important thing my dh noticed was that his friend does not have the raspy voice anymore. 

I dont get leg cramps but I do get the cramps in m feet during the night. I make sure to try and eat a banana as much as possible etc. 

Macraven - I hope the cramps decrease for you. I think they are so painful and such a sleep disruption etc.


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## macraven

luvmarypoppins said:


> I feel like I am the only one who doesnt know what their vit d number is, lol. All she told me this time was - its perfect! So I still have to take the 50,000 iui script.
> 
> 
> 
> Macraven - I hope the cramps decrease for you. I think they are so painful and such a sleep disruption etc.



thank you.

my endo said the leg cramps are due to the low level my vit d is at.
i tell you, it is miserable to be woken up with a leg cramp........
but, i have been reassured when my levels rise, this problem will disappear.

how long have you been on the ergo?
i was told i should be on it for one year.


----------



## angwill

LMP,  
I always ask for copies of my labs every time I get them.  I can also check in online and they are all there.  Tonight I went into the website and if I click on any test it will give me all my results from when I started getting them done in that hospital system.  

Macraven,
After surgery I had the most God awful leg cramps and stomach cramps along with horrible join pain mostly in my shoulders.  I also itched so bad I would scratch till I bled.  Once I was through hypo hell and had my meds back after my WBS along with vitamin D and an increase in calcium those things almost completely went away.  The only thing left is a little itch that is not intense at all, and I have a weird rash behind my ears that comes and goes.  These were things I never had issues with before surgery despite being Hashimoto's.  I do hope your cramping goes away because it can be awful.  

Wanted to add that my TSH, T4 and T3 have always fluctuated and my weight right along with it.  I was told that once it was removed I should not have as much of an issue with it fluctuating but it has been a year and we are still playing with meds.  My endo just added cytomel and decreased my levothyroxine last month to see if we can get my T3 to rise and see if it helps with my weight fluctuating with my TSH levels.  I lose and I gain and I lose and I gain everytime we have a med switch depending on the numbers.


----------



## Christine

angwill,

What is your T3 level?  I just had mine done and it seems okay but what seems okay in "doctor world" isn't necessarily what's really ideal.

That's good to hear that you were able to get your D level up so well.  My doctor told me to take 2000 IU per day.  I have the little gummies from Costco and I've been using that for the last few days, but I have gotten some stomach cramping and not sure if it's from that or what.  I may try a different type.

Interesting about the itching and rash.  What type of rashes did you have.  I have very sensitive, dry skin anyway but my shins can get VERY itchy and have been for some time now.  I have also had that go away when my iron levels are more robust.  We shall see what the vitamin D does.  

I can't say I really have rashes but I get odd spots here and there for no reason.   Uggghh, sometimes I just hate living in this body!!!!


----------



## SingingMom

I ask for copies of all labs, too.  I give them to all my doctors. Lol  I was very Low on vit D a few years back and was put on the mega dose.   I was told to continue with over the  counters, so I take 5000 mg a day, pays whate ER isn't my one-a day. So far it has been good.  

 Just booked my neck ultrasound. Don't really see the point - 21 years now, but this new endocrinologist likes to have them every 2 years. This is my second with her. Also booked my mammo & ultrasound - September will be "fun". Lol  

Off to Aulani in a week!  Going to start packing today!!!!!  "SingingMom" ....Sent from my iPad using DISBoards


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## angwill

Christine said:


> angwill,
> 
> What is your T3 level?  I just had mine done and it seems okay but what seems okay in "doctor world" isn't necessarily what's really ideal.
> 
> That's good to hear that you were able to get your D level up so well.  My doctor told me to take 2000 IU per day.  I have the little gummies from Costco and I've been using that for the last few days, but I have gotten some stomach cramping and not sure if it's from that or what.  I may try a different type.
> 
> Interesting about the itching and rash.  What type of rashes did you have.  I have very sensitive, dry skin anyway but my shins can get VERY itchy and have been for some time now.  I have also had that go away when my iron levels are more robust.  We shall see what the vitamin D does.
> 
> I can't say I really have rashes but I get odd spots here and there for no reason.   Uggghh, sometimes I just hate living in this body!!!!



The vitamin D I buy are little round liquid pills from Sam's club or Walgreens when they are bogo.  

I keep reading how Hashimoto's patients are prone to having Celiac Disease because once you have an autoimmune disease like Hashi your likely to get others like Celiac.  That said I have had intestinal issue for about 2 years now and had the doctor test me for Celiac last month and I don't have it.  I have been eating activa and taking a probiotic and it has helped quit a bit.  I haven't had stomach cramping since being in hypohell after surgery thank God because it was awful where I couldn't move. I don't know which was worse that or the shoulder joint pain that felt like a knife was cutting into it. 

My iron levels were tested and were good.  The itching on my legs comes with little blisters that are actually under the skin not raised.  The itching elsewhere comes with a slightly raised rash.  Behind my ears I get little fluid filled bumps that pop and scab.  I didn't have any of these before thyroid surgery.  I am always using lotion or coconut oil especially on my legs and shins.  My legs have always been extremely dry since my thyroid issues started 20 years ago but never itchy till surgery.  

My T3 levels have been between 2.6 and 2.9 over the last year and a half so low end of normal.  My TSH and T4 have both been on the hypo side of the scale however. T4 is 1.75-2.29 so higher than norm and TSH 0.06 to 0.12 so low end of norm.  We will see if lowering the levothyroxine and adding cytomel will bring the TSH up just a bit and bring up the T3 levels to a higher norm.  I love the health system website to get all my test results without pulling out the paperwork. lol


----------



## angwill

SingingMom said:


> I ask for copies of all labs, too.  I give them to all my doctors. Lol  I was very Low on vit D a few years back and was put on the mega dose.   I was told to continue with over the  counters, so I take 5000 mg a day, pays whate ER isn't my one-a day. So far it has been good.
> 
> Just booked my neck ultrasound. Don't really see the point - 21 years now, but this new endocrinologist likes to have them every 2 years. This is my second with her. Also booked my mammo & ultrasound - September will be "fun". Lol
> 
> Off to Aulani in a week!  Going to start packing today!!!!!  "SingingMom" ....Sent from my iPad using DISBoards



Right now I stay within my health system so all my doctors have computer access to all my results but if I notice they still use the folders with notes I give them copies knowing they must not be computer savy.  

Good luck with all the tests. At least you get to get away and forget about it all before you go. lol


----------



## SingingMom

angwill said:


> The vitamin D I buy are little round liquid pills from Sam's club or Walgreens when they are bogo.  I keep reading how Hashimoto's patients are prone to having Celiac Disease because once you have an autoimmune disease like Hashi your likely to get others like Celiac.  That said I have had intestinal issue for about 2 years now and had the doctor test me for Celiac last month and I don't have it.  I have been eating activa and taking a probiotic and it has helped quit a bit.  I haven't had stomach cramping since being in hypohell after surgery thank God because it was awful where I couldn't move. I don't know which was worse that or the shoulder joint pain that felt like a knife was cutting into it.  My iron levels were tested and were good.  The itching on my legs comes with little blisters that are actually under the skin not raised.  The itching elsewhere comes with a slightly raised rash.  Behind my ears I get little fluid filled bumps that pop and scab.  I didn't have any of these before thyroid surgery.  I am always using lotion or coconut oil especially on my legs and shins.  My legs have always been extremely dry since my thyroid issues started 20 years ago but never itchy till surgery.  My T3 levels have been between 2.6 and 2.9 over the last year and a half so low end of normal.  My TSH and T4 have both been on the hypo side of the scale however. T4 is 1.75-2.29 so higher than norm and TSH 0.06 to 0.12 so low end of norm.  We will see if lowering the levothyroxine and adding cytomel will bring the TSH up just a bit and bring up the T3 levels to a higher norm.  I love the health system website to get all my test results without pulling out the paperwork. lol



Interesting about the auto immune problems. I had pseudo tumor of the orbit and was told it could return with stress because I had it already. Guess I should keep alert for other auto immune trouble. 

Maybe I'll just go to Hawaii and drink rum....  Lol


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## luvmarypoppins

singing mom - I hope you have a great trip to Aulani. Sounds heavenly. cant wait to hear all about it.

Ang - sorry you have so many issues to deal with. That is alot on your plate for sure.

Christine - the med I was speaking about is protonix.

Well I know my endo would tell me if I asked her about the vit d number. They do have an onsite website, but I decided against signing up for it since it seems its not truly in house so to speak. Its through another third part and I just dont feel like having anymore people know my med info then those that already do etc. 

Well ds3 and I have tentatively booked a trip to WDW for Aug. 29 to Sept. 4th. He got the nurses rate at the Dolphin, except for the last night, they were sold out at both the Dolphin and the Swan, we called. So smart mom me came up with the Plan B, using dh ff miles to book one night at the Swan, yup still couldnt even get the dolphin with the ff miles, so we will have to change hotels for one night, no prob. Its practically across the walkway etc. Now for the food adrs and I am cashing my southwest ff miles in for one free way so that is good too. He is just hoping he doesnt get called in for an interview or things will be changing rapidly etc. 

He did go for one interview for a group home but the hours and shifts were terrible as well as a long commute, so he said thanks but no thanks for now etc. He is waiting for a hosp. to contact him and his 2 friends work there so hopefully they will help him get in etc. If he does it will be a miracle from God for sure.


----------



## angwill

luvmarypoppins said:


> singing mom - I hope you have a great trip to Aulani. Sounds heavenly. cant wait to hear all about it.
> 
> Ang - sorry you have so many issues to deal with. That is alot on your plate for sure.
> 
> Christine - the med I was speaking about is protonix.
> 
> Well I know my endo would tell me if I asked her about the vit d number. They do have an onsite website, but I decided against signing up for it since it seems its not truly in house so to speak. Its through another third part and I just dont feel like having anymore people know my med info then those that already do etc.
> 
> Well ds3 and I have tentatively booked a trip to WDW for Aug. 29 to Sept. 4th. He got the nurses rate at the Dolphin, except for the last night, they were sold out at both the Dolphin and the Swan, we called. So smart mom me came up with the Plan B, using dh ff miles to book one night at the Swan, yup still couldnt even get the dolphin with the ff miles, so we will have to change hotels for one night, no prob. Its practically across the walkway etc. Now for the food adrs and I am cashing my southwest ff miles in for one free way so that is good too. He is just hoping he doesnt get called in for an interview or things will be changing rapidly etc.
> 
> He did go for one interview for a group home but the hours and shifts were terrible as well as a long commute, so he said thanks but no thanks for now etc. He is waiting for a hosp. to contact him and his 2 friends work there so hopefully they will help him get in etc. If he does it will be a miracle from God for sure.



LMP,
To be honest I have never been one to sweat medical issues.  As long as I am not in bad pain that Aleve can't help I just deal with it.  I try not to talk about medical issues in my everyday life for fear I will make things worse. lol  I love these boards though because nobody understands like someone experiencing it themselves.  You get better advice here than the doctors office too. 

Your trip even with moving rooms sounds like a fun time.  I hope your DS gets a call the last day there for an interview after your back home and I hope it's his dream job.


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## SingingMom

LMP - we always stay at the Dolphin, except this past time with DD because it was just the two of us & I wanted to use Magical a Express.  The pool area and the restaurants are great at the Dolphin & Swan and I afore the "heavenly beds"!  Great location with the Friendship Boats to Epcot and Studios, we will be staynt there again in January.

I am all packed for Hawaii.  Now I have to oversee DH and DD's packing!  ;-)

"SingingMom" ....Sent from my iPad using DISBoards


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## macraven

SingingMom said:


> LMP - we always stay at the Dolphin, except this past time with DD because it was just the two of us & I wanted to use Magical a Express.  The pool area and the restaurants are great at the Dolphin & Swan and I afore the "heavenly beds"!  Great location with the Friendship Boats to Epcot and Studios, we will be staynt there again in January.
> 
> I am all packed for Hawaii.  Now I have to oversee DH and DD's packing!  ;-)
> 
> "SingingMom" ....Sent from my iPad using DISBoards



my brother owned a company in hawaii for many years until he closed it up this March.  he wanted to retire.
he was a contractor on the aulani resort.
he didn't have any issues with disney on the contract but said other contractors had a long wait for disney to pay them.

i did see the resort going up on one trip while in hawaii visiting brother.

and saw it again after it was finished.
it looks lovely!

he recently left hawaii after living there for 25 years and recently moved to central florida.

have a great time on your vacation!


LMP, that stinks you have to change hotels for one night.
crossing my fingers something opens up for you soon so you don't have to switch hotels.


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## branv

Wow. Fascinating in a bad way. When my body finally went ballistic on the thyroid problems this year, I got what looked like part eczema and part gives on my forearms. My eyelids and area around the eyes got scaley and flakey (yum!). My eyes watered all the time for a while. When I finally saw an endo, she didn't just up my dosage, when she saw the skin issues, she took me off generic levothyroxine, and put me on the name brand synthroid. She said sometimes people react to the ingredients in levo/generics. It has steadily improved, but not sure if that is a result of the diff med or dose.


----------



## Christine

angwill said:


> My T3 levels have been between 2.6 and 2.9 over the last year and a half so low end of normal.  My TSH and T4 have both been on the hypo side of the scale however. T4 is 1.75-2.29 so higher than norm and TSH 0.06 to 0.12 so low end of norm.  We will see if lowering the levothyroxine and adding cytomel will bring the TSH up just a bit and bring up the T3 levels to a higher norm.  I love the health system website to get all my test results without pulling out the paperwork. lol




Very interesting, again.  My T3 was 2.6 this time and my endo thinks it's fine.  My T4 was at 1.42, which was quite a bit lower than what it was before.  Yet my TSH remained at around 0.3.  I know there are issues if your T4 is very high yet for T3 sits at a lower range.


----------



## angwill

branv said:


> Wow. Fascinating in a bad way. When my body finally went ballistic on the thyroid problems this year, I got what looked like part eczema and part gives on my forearms. My eyelids and area around the eyes got scaley and flakey (yum!). My eyes watered all the time for a while. When I finally saw an endo, she didn't just up my dosage, when she saw the skin issues, she took me off generic levothyroxine, and put me on the name brand synthroid. She said sometimes people react to the ingredients in levo/generics. It has steadily improved, but not sure if that is a result of the diff med or dose.



I wish all mine was is the fillers in the meds but I had been on Levo with a switch here and there to Synthroid and back over 20 years without these issues. Mine were at their worse when being supressed and not taking meds for RAI treatment after thyroid cancer.  

I have read that some with filler issues have the same issues on Synthroid and need to go on natural thyroid.  I hope the Synthroid switch works for you.  When I have switched over the years both the Levo and Synthroid worked the same for me so I ended up asking for generic Levo that was quit a bit less expensive years ago.  Even now I get Levo for $10 for three months at Walmart.


----------



## angwill

Christine said:


> Very interesting, again.  My T3 was 2.6 this time and my endo thinks it's fine.  My T4 was at 1.42, which was quite a bit lower than what it was before.  Yet my TSH remained at around 0.3.  I know there are issues if your T4 is very high yet for T3 sits at a lower range.



2.6 for T3 is in the normal range but at the lower end of normal.  The doctor said my med change was because my T4 was higher than normal and since my TSH is lower and closer to hypo we needed to get those in line so he lowered my Levo dose and added the cytomel to help and that should increase the T3 while hopefully bringing the TSH and T4 back into range.  We need the TSH level as low in he normal range as possible though due to the thyroid cancer.


----------



## Christine

angwill said:


> 2.6 for T3 is in the normal range but at the lower end of normal.  The doctor said my med change was because my T4 was higher than normal and since my TSH is lower and closer to hypo we needed to get those in line so he lowered my Levo dose and added the cytomel to help and that should increase the T3 while hopefully bringing the TSH and T4 back into range.  We need the TSH level as low in he normal range as possible though due to the thyroid cancer.



Thanks.  I actually checked by T4 again today and it is lower than I thought (1.24)--guess I read it wrong the first time.  I did read that the T4 and T3 should be so "opposed" so I guess if you have a very high T4, you don't want a lower T3.  Mine are both now on the lower end of normal so I guess it's okay.

Interesting development:  I probably did not mention that I have been seeing a psychiatrist for some anxiety issues that resulted from the post-shooting/change in thyroid meds debacle that happened last year.  I see him every 3 months or so.  I went back today and gave him my Vitamin D results.  He immediately wrote me a prescription for the 50,000 IUs to take for 12 weeks.  He kind of shook his head when I told him my endo just told me to take OTC supplements.  He said I probably would never get my levels up that way.  So, I've got to take the higher dose now.  I have to say, I'm kind of scared.  It sounds like a LOT.


----------



## angwill

Christine said:


> Thanks.  I actually checked by T4 again today and it is lower than I thought (1.24)--guess I read it wrong the first time.  I did read that the T4 and T3 should be so "opposed" so I guess if you have a very high T4, you don't want a lower T3.  Mine are both now on the lower end of normal so I guess it's okay.
> 
> Interesting development:  I probably did not mention that I have been seeing a psychiatrist for some anxiety issues that resulted from the post-shooting/change in thyroid meds debacle that happened last year.  I see him every 3 months or so.  I went back today and gave him my Vitamin D results.  He immediately wrote me a prescription for the 50,000 IUs to take for 12 weeks.  He kind of shook his head when I told him my endo just told me to take OTC supplements.  He said I probably would never get my levels up that way.  So, I've got to take the higher dose now.  I have to say, I'm kind of scared.  It sounds like a LOT.



Here is an article on WebMD about too much Vitamin D supplements.  It isn't going to make you feel much better but it will give you an idea of what the side effects are and what blood tests to ask for to keep an eye on your levels.  http://www.webmd.com/osteoporosis/features/the-truth-about-vitamin-d-can-you-get-too-much-vitamin-d

That shooting you went through would trouble my mind as well.  I do hope your anxiety subsides as time goes on.


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## angwill

SingingMom said:


> Interesting about the auto immune problems. I had pseudo tumor of the orbit and was told it could return with stress because I had it already. Guess I should keep alert for other auto immune trouble.
> 
> Maybe I'll just go to Hawaii and drink rum....  Lol



I will go with you to Hawaii and bring a jar of dirt along with the rum. lol


----------



## macraven

Christine said:


> Thanks.
> Interesting development:  I probably did not mention that I have been seeing a psychiatrist for some anxiety issues that resulted from the post-shooting/change in thyroid meds debacle that happened last year.  I see him every 3 months or so.  I went back today and gave him my Vitamin D results.  He immediately wrote me a prescription for the 50,000 IUs to take for 12 weeks.  He kind of shook his head when I told him my endo just told me to take OTC supplements.  He said I probably would never get my levels up that way.  So, I've got to take the higher dose now.  I have to say, I'm kind of scared.  It sounds like a LOT.



if you are taking the ergo once a week, then 50,000 iu is the normal dose.

i was concerned also the first 2 weeks i took the vit d.
but, no side effects or issues happened to me.

you should have an increase in that 3 month period.
i hope your levels improve soon!


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## luvmarypoppins

ang - interesting article. Maybe I should ask my endo next time I speak to her about this.

Christine - I have been taking the 50,000 once a week since 2009 and the endo has never said anything except your levels are good. I do know at first I had practically no vitamin d in my body they said if I remember correctly. I think that was a result of my bone marrow shutting down before the cancer dx. 

I am sure its hard to deal with all you have been through and the post traumatic stress, but I am glad you have someone to talk to and will help you.
I hope you will be able to heal over time. I am sure it is a process. I cant imagine what you have gone through. Wishing you all the best always.


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## luvmarypoppins

Well the trip plans are finalized. Ds and I are staying at the Dolphin from 8/29 till 9/1 and then the 2nd we are staying at the Yacht Club for one night.

I was planning to switch to the Swan but when I went to book it the rooms were sold out. It must be some really big conference because both places are sold out and I cant even get a room there with dh ff miles.

So I got a good deal with dh ff miles at the Yacht Club for a standard room. Hello Stormalong Bay again. 

Also the first MNSSHP is Sept. 1st so ds said he would like to go. 

Now to make some dining adrs. I want to see the new Frozen events at the studios. 

I hope this works out and that ds doesnt have to go on an interview etc. We shall see.


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## SingingMom

luvmarypoppins said:


> Well the trip plans are finalized. Ds and I are staying at the Dolphin from 8/29 till 9/1 and then the 2nd we are staying at the Yacht Club for one night.  I was planning to switch to the Swan but when I went to book it the rooms were sold out. It must be some really big conference because both places are sold out and I cant even get a room there with dh ff miles.  So I got a good deal with dh ff miles at the Yacht Club for a standard room. Hello Stormalong Bay again.  Also the first MNSSHP is Sept. 1st so ds said he would like to go.  Now to make some dining adrs. I want to see the new Frozen events at the studios.  I hope this works out and that ds doesnt have to go on an interview etc. We shall see.




Enjoy!!   We always stay at the Dolphin -  love to sit in the lobby with a drink and people watch after a long park day!
The Cabana Bar area is so relaxing!  I hope it's warm enough when I go back in January!

The Frozen fireworks and sing-a-long are the best!!!  We did the Premium package, so we had the dessert party included. DD & I loved it!

We leave for Aulani Monday!  Helping DH with his packing now. He really needs a vacation.  I hope I can sleep on the plane. Long flight!!!

"SingingMom" ....Sent from my iPad using DISBoards


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## luvmarypoppins

singing mom - I hope you are having a great trip.

I have been working on my trip planning. I just booked the wheelchair and towncar. I only made 2 adrs so far. BOG dinner for the night of MNSSHP and then beaches and cream for dinner before we leave. I hope that works out. I am going to try and get in there sooner and order as soon as we sit down etc. 

Hope we get to see the Frozen fireworks and sing along. 

I have been having alot of digestive issues again, so I guess I should make an appt. with the gastro. I would rather have dh there with me because I just know they will want to do an endoscopy and I am hoping not the other end but I am sure they will do 2 at once. 

Hope everyone is doing well. Check in when you can.


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## Christine

Not much going on here.  Just working on getting DS back to school.  He went down mid week to volunteer to help move the freshman into the dorms.  He came back home but will leave on a more permanent basis on Sunday.  The school is only 2 hours a way, so not a huge deal to go back and forth.

Last week, I took my first 50,000 IU Vitamin D pill.  I did okay at first, but I woke up with lower back pain which progressed to my knees and then my entire legs for all of that day and the next.  Then it just went away.  Sure, I get aches and pains now and then but not like that without a reason for it.  So, I'm convinced it was the high dose Vitamin D; however, from what I read, side effects are very rare and the side effects I experienced were more likely from a magnesium deficit caused by the Vitamin D using it all up.  All I know is that I'm not taking it this weekend because I don't want to be aching through most of it.  I'll just take the lower dose stuff and give the high dose tablet a try when I have nothing going on.


----------



## luvmarypoppins

This thread has been quiet.

Christine - how are your vitamin D issues?

singingmom - how was the Aulani trip?

Well I am back from the trip with ds. We did so much in the time we were there. I called ds the energizer bunny. He pushed me around alot. I told him there was no way I could do all he wanted to do in the heat without him pushing me. He refused to go back to the room for a break so it was go, go , go.

We liked the Dolphin, except when they didnt make our room up the last night. I did think it was too much walking compared to the Swan. We got upgraded from a standard room to a resort room view which was nice and also we were close to the elevators which was what I asked for. 

It was hot, really hot. We liked the MNSSHP, but probably wouldnt do it again. We really arent Halloween people. I decorate just fall type stuff. 

We loved the frozen fireworks, and sing along. 

We ate but with the heat you didnt feel like eating alot. I got kids meals several times. At Coral Reef we got a tank table which ds was thrilled with. Hate to say this, but I am getting weary of Be Our Guest dinner. Think I will skip it the next time. The biggest disappointment was Beaches and Cream. I think that place has gone downhill from our last visit. Ds and I also learned not to do 2 buffets in one day. We did Tusker House for lunch and then Hollywood and Vine for dinner. Way too much food in one day. I felt sick. I will probably do a little dining report on the other board.

We also went to see La Nouba. Ds has been dying to see this anywhere for years and he was beyond thrilled. Even though our seats were at the highest place in the theater we had a good view of everything right in the middle.

Our room at the Yacht Club was also fantastic. I booked the cheapest room with dh ff miles - standard view and when we got there they said we were upgraded to Water View. Our view was straight across Crescent Lake looking at the ESPN Club. Awesome! We did get to swim in storm a long bay twice but wish it was longer. Also out of the three pools there they closed my favorite one for maintenance right when we were there. 

The Downtown Disney area is a mess! Glad we took a taxi to the show, but we walked the whole place back to the bus stop. Or I should say ds did.

The fall decorations were really nice at MK. 

Well its back to reality. I will call to schedule the bone scan next week. My knees were really bothering me on the trip. 

If you have any spare prayers, please say one for ds3 tomm. He got a call on our trip from my friend and her friend works at a hosp.  that he put his resume into a hospital that is about an hour away, but its for a very prestigious nursing fellowship in pediatric oncology/hematology and she heard that tomm. they will be talking about his resume. At least talking is a good thing, so I am going to pray for him if that is a door that God wants open for him. 

Check in when you can.


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## angwill

Christine, Sounds like your DS is busy with college.  How fun.  Sorry to hear about the pain after the high dose vitamin D.  

LMP,  Your Disney trip sounds like a real blast.  So glad you had a good time.  I am sending prayers for your DS fellowship.  Hope he hears from them soon. 

I went to my sleep doctor this week and she is concerned that my lymph nodes are swollen.  Heck they have been swollen since taking RAI and I just figured it was that causing the problem.  My endo never even feels my neck only checks my levels so it sounds like he dropped the ball.  So I am off to the surgeon next week to have them do testing on the lymph nodes and probably and MRI or CT scan.  Has anyone else had problems with lymph node swelling?  

Thanks,
Ang


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## SingingMom

angwill said:


> Christine, Sounds like your DS is busy with college.  How fun.  Sorry to hear about the pain after the high dose vitamin D.  LMP,  Your Disney trip sounds like a real blast.  So glad you had a good time.  I am sending prayers for your DS fellowship.  Hope he hears from them soon.  I went to my sleep doctor this week and she is concerned that my lymph nodes are swollen.  Heck they have been swollen since taking RAI and I just figured it was that causing the problem.  My endo never even feels my neck only checks my levels so it sounds like he dropped the ball.  So I am off to the surgeon next week to have them do testing on the lymph nodes and probably and MRI or CT scan.  Has anyone else had problems with lymph node swelling?  Thanks, Ang



Your endo doesn't feel your neck???  That's more than "dropping the ball"! Geesh!  Hopefully it's nothing, but he should be feeling the entire neck area at every visit. 


Our trip to Aulani was wonderful. The people of Hawaii are the sweetest, most friendly individuals I have ever met. We enjoyed the trip and the beauty of Oahu. Unfortunately, the resort did not have many excursions that  included transportation. We didn't want to  rent  a car and Aulani is on the west shore, so we were limited in that. Took a cab to mass Saturday night and the excursions to Pearl Harbor, catamaran/snorkeling, and surfing.  We walked to the Paradise Cove Luau and to dinner a few times.  Disney is lacking in dining choices at the resort. They need to add a few and keep the ones they have open later.   I prefer the beach in Bermuda, but the place DD & DH had their surfing lesson was gorgeous.  All in all, a great vacation.  The staff all made a big fuss over DD turning 21!

Now getting all my dr appts up to date.  Fun, fun.

LMP- keep us posted on your son's job!  

Everyone - be well!

"SingingMom" ....Sent from my iPad using DISBoards


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## angwill

singingmom,  

My endo is a nice man and really good at explaining the book stuff to you about what's happening but beyond that he is not so good.  I would have gone elsewhere if there were any other endo's anywhere in our area but there are not.  I would have to travel about 2 hours to get to another one and as it is he is 45 minutes from me.  He has never checked my neck and spends about 10 minutes with me to say hello and tell me about my lab results or what labs to get done and then charges me $165 for his neglectful time. Our choices where I live are very limited.  

At least my surgeon who will be dealing with my lymph nodes is excellent.  He is the only surgeon withing about a 4 hour drive who will even see people without insurance and give them a payment plan or see anyone with medicaid and as far as I know there is nobody better than him so I am happy to have him.  I had a friend with cancer and no insurance and it was near impossible to find him since no other surgeon or doctor would see her without payment up front for the visit and then the surgery bill paid before surgery. I was calling around and flat out told if she didn't have the money she would have to live with the cancer.  I was shocked at the responses I got.  Anyway, my point is that he is the best at what he does and he really cares about people so I am sure if something is wrong he will figure it out.


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## luvmarypoppins

ang - I am sorry you are dealing with this again. When is your surgeon appt.?

My endo always checks my neck but I can say its really fast. I wonder how she can feel anything like that but she does kind of press hard etc.

I did have one issue with one lymph node like a year after surgery or maybe two. I cant remember what I posted here.

The lymph node was popping out. It was the same side as my neck dissection. This was a really high one by my bottom ear area. The whole area was itching and pulling and that led the surgeon to believe it was infected.

I made him do a biopsy and he asked me about my most current blood work and was deciding if he was going to do a ct scan or not. Mine was infected and I just had to have an antibiotic. I dont think they would have done a biopsy under normal circumstances but since he almost killed me I think he gave into my wishes. 

Wishing you all the best and I hope you get answers soon. Hang in there!


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## SingingMom

angwill said:


> singingmom,  My endo is a nice man and really good at explaining the book stuff to you about what's happening but beyond that he is not so good.  I would have gone elsewhere if there were any other endo's anywhere in our area but there are not.  I would have to travel about 2 hours to get to another one and as it is he is 45 minutes from me.  He has never checked my neck and spends about 10 minutes with me to say hello and tell me about my lab results or what labs to get done and then charges me $165 for his neglectful time. Our choices where I live are very limited.  At least my surgeon who will be dealing with my lymph nodes is excellent.  He is the only surgeon withing about a 4 hour drive who will even see people without insurance and give them a payment plan or see anyone with medicaid and as far as I know there is nobody better than him so I am happy to have him.  I had a friend with cancer and no insurance and it was near impossible to find him since no other surgeon or doctor would see her without payment up front for the visit and then the surgery bill paid before surgery. I was calling around and flat out told if she didn't have the money she would have to live with the cancer.  I was shocked at the responses I got.  Anyway, my point is that he is the best at what he does and he really cares about people so I am sure if something is wrong he will figure it out.



I'm glad your surgeon is good. He'll get to the bottom of the swollen gland issue. Probably just an infection that settled there.   
It's too bad you are in an area that doesn't have more choices.  I can't get past the fact an endo isn't touching your neck at each visit. A GP, maybe, but that's what an endo does. ;-)

"SingingMom" ....Sent from my iPad using DISBoards


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## luvmarypoppins

singingmom - your trip sounded wonderful. I think I would love Hawaii. 

Do they send you a guest survey? Maybe you could comment on some of the issues you had. 

Well September is....Thyroid Cancer Awareness Month. I have to be honest. I forgot. One of the authors I follow, Kathleen Fuller, posted it on her facebook page as she is a thy ca survivor. 

If anyone knows how to post a graphic type thing, I think it would be great to put something on the community board.


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## angwill

I see my surgeon on Tuesday afternoon which will just be what the plan of attack is.  

I just figured he didn't feel my neck because why bother if your thyroid is gone?  I guess I was wrong in assuming. Oddly, my GP or her NP always feel my neck, go figure.


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## SingingMom

angwill said:


> I see my surgeon on Tuesday afternoon which will just be what the plan of attack is.  I just figured he didn't feel my neck because why bother if your thyroid is gone?  I guess I was wrong in assuming. Oddly, my GP or her NP always feel my neck, go figure.


  My endo even has an ultrasound of the thyroid bed done every few years even though I had a total thyroidectomy 22 years ago!   She feels my neck every year, with and without be taking sips of water and swallowing.  "SingingMom" ....Sent from my iPad using DISBoards


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## Christine

SingingMom said:


> My endo even has an ultrasound of the thyroid bed done every few years even though I had a total thyroidectomy 22 years ago!   She feels my neck every year, with and without be taking silos of water and swallowing.
> 
> "SingingMom" ....Sent from my iPad using DISBoards



Mine too!


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## angwill

I had my thyroid removed last year due to cancer.  I had my 6 month ultra sound and need another one done till I am on schedule to get them every year with a WBS.  I am going to ask my endo when I see him why he doesn't feel my neck and the lymph nodes.  I have a feeling he is going to say it is because my ultrasound, WBS, and thyroid marker came back fine.  Well the good news is that the surgeon said he is not worried about my lymph nodes because all my tests came back good.  So I don't have to worry about that.  He said he feels some doctors do too many tests for no good reason and if something was really wrong he feels I would have other signs that would go alone with it.  I didn't ask what signs I just got the hell out of that office.  I was more nervous at that visit than any other for some reason.


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## SingingMom

angwill said:


> I had my thyroid removed last year due to cancer.  I had my 6 month ultra sound and need another one done till I am on schedule to get them every year with a WBS.  I am going to ask my endo when I see him why he doesn't feel my neck and the lymph nodes.  I have a feeling he is going to say it is because my ultrasound, WBS, and thyroid marker came back fine.  Well the good news is that the surgeon said he is not worried about my lymph nodes because all my tests came back good.  So I don't have to worry about that.  He said he feels some doctors do too many tests for no good reason and if something was really wrong he feels I would have other signs that would go alone with it.  I didn't ask what signs I just got the hell out of that office.  I was more nervous at that visit than any other for some reason.



So happy to hear you had a good report!  Those lymph nodes are tricky things !   . LOLOLOL 

Had my ultrasound yesterday. I am asking at my appointment why this is necessary after all these years. Waste of money I think. 

Monday I go for next stage of my dental implant. I am a wreck.  It was an ordeal to extract the remaining root canal & do the grafting. I was miserable for a few days and uncomfortable for two weeks. (this is such an easy procedure- my foot!).  I asked DH to come with me so I can take Xanax and not worry about driving home!

"SingingMom" ....Sent from my iPad using DISBoards


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## luvmarypoppins

ang -so happy for your good report! I am sure your were nervous. I would cringe if I had to see my surgeon again, especially since he almost killed me during surgery. 

How many body scans do you have to have? My rad. onc. said once there are 2 good ones (the 2nd at the one year post op mark) she wont do anymore because she says the blood tests are reliable enough. I dont even have to see her anymore either. 

singing mom - sorry you have to go through all these dental woes. I am long overdue for the dentist. Mine quit and didnt sell the practice to someone so I need to find a new one. 

Christine - how are you feeling?

My R hip is causing me so much pain. I am alternating between tylenol and aleve and using my grandmas walker as necessary. Dont know what is the matter with it.


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## angwill

Singing mom,

Good luck with the ultrasound.  How often do they make you get an ultrasound?  Do you still get your thyroid marker tested and WBS's.  I am wondering what happens after the 5 years.  My dr is saying all those things every year after this first year at every 6 months.  

Dental implants are not simple that is a surgery and it hurts when you get the grafting and such.  Sometimes I wish I was living in simpler times when they just pulled the darn teeth and there were no WBS's. lol  I hope the rest of the implant procedure is easy on you.  

LMP,  
OMG, I would never see my surgeon if he almost killed me.  I love my surgeon he is the best but I still would rather never see him again. lol  

I will get my 3rd WBS since surgery in January.  I spread them out further than I was supposed to.  I hate them and am thinking if I can find a good GP who is willing to test my thyroid and give me meds I am going to ditch my endocrinologist.  He really is best with diabetes and not so good with thyroid IMO.  How often do you get your thyroid markers checked?  Do you not have ultrasounds done?  How long did you get those after surgery?  I have printed articles that the bigger more advanced hospitals don't do the WBS only thyroid marker and ultrasound but my endo won't discuss the articles only go with what he knows and that means WBS yearly.  Thyrogen shots at $12,000 once a year is insane IMO as well.

So sorry to read about your hip.  I am an Aleve/Tylenol user too and they are what helps me.  I do hope your hip feels better soon.  Did you see the doctor about it?


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## luvmarypoppins

ang - I wouldnt be doing those yearly WBS after 2 clean WBS either. You are just exposing yourself to more radiation etc. 

I wonder if your endo is doing this because you have a rare variant too? 

I think the current literature is blood and ultrasound every 6 months for up to 5 years. I cant remember what my rad. onc. said at my last visit and that was last year. 

My endo does diabetes too.

Anyone see the little news article about those having Type A blood are supposedly more prone to oral cancer, salivary gland cancer and I forgot the third one.  Any one here have type A. My own little unscientific study, lol. I know the article did not say thyroid cancer, but the other 2 are close enough maybe.


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## SingingMom

luvmarypoppins said:


> ang - I wouldnt be doing those yearly WBS after 2 clean WBS either. You are just exposing yourself to more radiation etc.  I wonder if your endo is doing this because you have a rare variant too?  I think the current literature is blood and ultrasound every 6 months for up to 5 years. I cant remember what my rad. onc. said at my last visit and that was last year.  My endo does diabetes too.  Anyone see the little news article about those having Type A blood are supposedly more prone to oral cancer, salivary gland cancer and I forgot the third one.  Any one here have type A. My own little unscientific study, lol. I know the article did not say thyroid cancer, but the other 2 are close enough maybe.



Oh brother. So something  ELSE  to worry about??!  Lol. Type A here, of course.   LOLOLOL


I only had one WBS.  I never had an ultrasound until I switched endocrinologists. She has been doing them every other year; this was my second. When I go for my appt in a few weeks, I'm going to ask her why I need any more after 22 years.  Ang- I have all that blood work every year.  My synthroid dosages gave changed throughout the years.

"SingingMom" ....Sent from my iPad using DISBoards


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## Christine

I am Type A too.  No, I didn't see that article.


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## angwill

Type A for me too.


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## luvmarypoppins

O.K. I am A too, now this is scaring me ladies. What do you all think. Too much of a coincidence or what????

The third cancer was esophageal and you all know my wonderful digestive issues etc. 

O.K. - anyone else who has thy ca and is reading along, want to chime in and tell us if you have type A blood?????


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## SingingMom

luvmarypoppins said:


> O.K. I am A too, now this is scaring me ladies. What do you all think. Too much of a coincidence or what????  The third cancer was esophageal and you all know my wonderful digestive issues etc.  O.K. - anyone else who has thy ca and is reading along, want to chime in and tell us if you have type A blood?????



Let's not jump to conclusions just yet! So many people are A positive!  Trying to play the optimist! Even if it is a "cockeyed" one!   ;-).

"SingingMom" ....Sent from my iPad using DISBoards


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## angwill

I am with Singing Mom.  There are only 4 blood types then the RH factors.  A+ is the second most common blood type.  I think like 33% of the population has that type.  Being an optimist I think if a third of the population is type A then about a third of thyroid cancer patients will have it too.


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## squeegee

Popping out of lurkdom.  It's type AB, not A, mentioned in the article. 

https://www.yahoo.com/health/type-ab-blood-you-may-be-more-prone-to-memory-loss-97230693847.html


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## angwill

squeegee said:


> Popping out of lurkdom.  It's type AB, not A, mentioned in the article.
> 
> https://www.yahoo.com/health/type-ab-blood-you-may-be-more-prone-to-memory-loss-97230693847.html



Type A blood were shown to be at significantly higher risk of heart disease. Another recent study, published in the Journal of Clinical & Diagnostics Research, identified Type A blood as a possible risk factor for oral, esophageal, and salivary gland, cancers, while Type B was flagged as a potential risk factor for laryngeal cancers.

It does say type A for the oral, esophageal, and salivary gland cancer.  


I think it is like any other study it is most likely limited in how many people they actually studied and really not a proven thing when looked at in the actual population.


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## squeegee

angwill said:


> Type A blood were shown to be at significantly higher risk of heart disease. Another recent study, published in the Journal of Clinical & Diagnostics Research, identified Type A blood as a possible risk factor for oral, esophageal, and salivary gland, cancers, while Type B was flagged as a potential risk factor for laryngeal cancers.  It does say type A for the oral, esophageal, and salivary gland cancer for Type A.  I think it is like any other study it is most likely limited in how many people they actually studied and really not a proven thing when looked at in the actual population.



I think I found the one you're referring to.
Yep, is likely limited in real-world populations. 
Am O+, myself. LOL.   
Back to lurkdom.


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## angwill

squeegee said:


> I think I found the one you're referring to.
> Yep, is likely limited in real-world populations.
> Am O+, myself. LOL.
> Back to lurkdom.



Thanks coming out of lurkdom for us.  You have the most common blood type.


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## luvmarypoppins

I am doing a runner up post here. I couldnt decide where to post my 10,000th post (Christine I know, I have nothing on you).

But I did it on the breast cancer thread, so sorry this is the 10,001 post. 

Christine - what are you reading? I am doing another amish book again. I did a cowboy one and a murder mystery lately too.

My dh is coming home tomm, yeah. 

I need to schedule my bone scan. sigh.

Looking at a nice dec. trip. That will only be dh and myself. I think we will do a split day between the Swan and the Yacht and Beach. Its too expensive to stay at the Yacht and Beach all week, even with a 30% room discount. 

Hope everyone has a great week end.

Check in when you can.


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## Christine

luvmarypoppins said:


> I am doing a runner up post here. I couldnt decide where to post my 10,000th post (Christine I know, I have nothing on you).
> 
> But I did it on the breast cancer thread, so sorry this is the 10,001 post.
> 
> Christine - what are you reading? I am doing another amish book again. I did a cowboy one and a murder mystery lately too.
> 
> My dh is coming home tomm, yeah.
> 
> I need to schedule my bone scan. sigh.
> 
> Looking at a nice dec. trip. That will only be dh and myself. I think we will do a split day between the Swan and the Yacht and Beach. Its too expensive to stay at the Yacht and Beach all week, even with a 30% room discount.
> 
> Hope everyone has a great week end.
> 
> Check in when you can.



I am reading "The Book of Life" which is the third in a trilogy by Deborah Harkness.  It's a sort of "adult" Harry Potter type of story.  I have a few other books in my queue on my Kindle.

We have a wedding to go today.  It's about 2 hours away, way down in southern MD.  We don't have a lot of weddings in my family (last one was about 2 years ago).  But it's a chance to see all my relatives.  Just wish the drive wasn't so far.


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## macraven

luvmarypoppins said:


> I am doing a runner up post here. I couldnt decide where to post my 10,000th post (Christine I know, I have nothing on you).
> 
> But I did it on the breast cancer thread, so sorry this is the 10,001 post.
> 
> Christine - what are you reading? I am doing another amish book again. I did a cowboy one and a murder mystery lately too.
> 
> My dh is coming home tomm, yeah.
> 
> I need to schedule my bone scan. sigh.
> 
> Looking at a nice dec. trip. That will only be dh and myself. I think we will do a split day between the Swan and the Yacht and Beach. Its too expensive to stay at the Yacht and Beach all week, even with a 30% room discount.
> 
> Hope everyone has a great week end.
> 
> Check in when you can.



congrats on running with the big doggies now!
you hit 10,000 + and that is marvelous...


i haven't been around in weeks here, just tied up with many things.
my mother passed away in my arms in august and it is not easy to get passed it sometimes.
my mind wanders to it frequently.
same thing happened with my dad last year, passed while i was  holding him.

i had a horrid score on my Vit D in december, a 7.
started the ergo and in july, the endo said i was at a safe limit of 46.
she took me off the script 8 weeks ago.

had a blood clot in my leg and the vein burst, last week so doctors and labs i was tied up with.
i complained about getting the charley horses again in the calf and asked if there was any connection to the vit d levels.
the clot was at the same place in the calf where i would have pain.

doctor did the alpha 25 test and found my vit d levels had dropped to the teens this time.

i'm now back on the ergo and they want me to increase the dose to twice a week. 100,000 i.e.

have any of you with the vit d defiency ever yo-yoed like this with ergo before?

hope you all are doing fine.

i'm cleared to fly this month for my trip to the motherland.
that was the best news i have had this month.


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## luvmarypoppins

macraven - I am so sorry for your loss I am sure it is so hard on you. At least you got to be with them and say goodbye so I am sure that is a comfort. I never got to say goodbye to either of my parents. They both had heart attacks and died very young. 

Also sorry you have to deal with the vit d issues. I have been on the 50,000 iu prescription since even before I got dx with the thyroid cancer because my bone marrow shut down and stopped making red blood cells so hence I had almost no vit d in my body the dr. said if I remember correctly.

Your blood clot issues must be scary. I would want them addressed asap too. I hope you recover quickly.

I hope you have  a wonderful trip and enjoy every minute of it. I hope it will be relaxing and refreshing for you. I am sure you need that after all you have been through. 

Wow, you sure have a lot of posts. I dont usually post something unless I have something to say. 

Wishing you all the best.


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## SingingMom

macraven said:


> congrats on running with the big doggies now! you hit 10,000 + and that is marvelous...  i haven't been around in weeks here, just tied up with many things. my mother passed away in my arms in august and it is not easy to get passed it sometimes. my mind wanders to it frequently. same thing happened with my dad last year, passed while i was  holding him.  i had a horrid score on my Vit D in december, a 7. started the ergo and in july, the endo said i was at a safe limit of 46. she took me off the script 8 weeks ago.  had a blood clot in my leg and the vein burst, last week so doctors and labs i was tied up with. i complained about getting the charley horses again in the calf and asked if there was any connection to the vit d levels. the clot was at the same place in the calf where i would have pain.  doctor did the alpha 25 test and found my vit d levels had dropped to the teens this time.  i'm now back on the ergo and they want me to increase the dose to twice a week. 100,000 i.e.  have any of you with the vit d defiency ever yo-yoed like this with ergo before?  hope you all are doing fine.  i'm cleared to fly this month for my trip to the motherland. that was the best news i have had this month.



So sorry for your loss!   Hope you are feeling better with the blood clot issues.


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## angwill

LMP,  congrats on the high posts.  I don't pay close attention but will look at my post number when I post this.  

McRaven,  So sorry to hear about your parents.  I didn't get to be with mine either but we were not really close so I am sure they didn't miss me. I can only imagine if I was close how hard it would be.  I did lose a brother, I was very close to, my childhood love in my 20's and a 4 year old niece and those hurt like hell  

I got really awful cramping right after my thyroid cancer surgery when my vitamin D levels and my thyroid hormones were way low.  I would get the charlie horses in my calves, abdomin and my joints especially my shoulders.  I do hope you get that blood clot issue fixed, that would be very scary.  Good luck with the vitamin D as well.  I hope it stays up for you.  

I did want to say I finished reading The fault in our stars months ago and really liked it.  I then saw the movie last night and she described her cancer differently than the book in that she had thyroid cancer they took out and was under control but then she got tumors in her lungs after that.  To me the movie was more about her falling in love but also about coping with cancer.  I will not watch the movie again because of one part in it that I could not emotionally handle though.  It wasn't about her or the thyroid cancer that got me it was something else that brought back memories for me.  I am glad I read the book and saw the movie though it was so well done.

Edited to say no where near 10,000 for me.  I guess I don't have enough to say. lol


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## macraven

thank you all for your kind words.
i have taken care of both my parents full time since 2009 and it was part time for 2007 and 8.

in 2010, my dad had colon surgery so for 3.5 years, i did all the care for the colostomy bag, cleaning, etc.

it was hard work and time consuming but if i had to do it all over again, i would.
neither of my brothers cared or was concerned on helping them, even for a few days to give me a break.

so this coming vacation i have planned will be my first one since 2007 that i don't have to worry about cutting short and returning home for emergency care for them.
(i hired people to care for them when i was on vacation)

the blood clot did not travel up but out when the vein burst.
i was lucky.

they found out after the fact that the entire medical problem came to be extremely low levels of vit D.


i think my endo did not realize by taking me off of the ergo that my levels would drop very low in a matter of less than 2 months.
i'm back on it again and will have to up it to 100,00 iu a week once i have been on the 50,000 iu for the next 4 weeks.

if any of you start getting severe charlie horses or shoulder pain that wakes you up in your sleep, have your endo check your Vit D levels.
it took 2 weeks of that before the blood clot happened.

LMP, well, it is a tad embarrasing to have so many posts on the dis.
i have had issues for years of being unable to sleep well for years.
so, i have spent many hours on the dis and post all over the place.

i have been reading this thread for a couple of years but never posted.
i paid attention to others and their thyroid problems.

since i have the most common thyroid problem, hasimoto (for the past 27 years), and never cancer like many of you have discussed, i didn't post here.
just thought my medicals were nothing compared to all here.

but when someone talked about their Vit D issue, i wanted to share my experience in case it helped someone else as it is related to the hypothyroidism.

thanks for letting me be here.


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## Christine

Hi macraven!  I've seen you around the DIS on other boards.
I feel bad that you felt like you couldn't post here with your "regular" thyroid problems.  This thread was started long ago for general thyroid issues such as getting thyroid meds adjusted, feeling bad when hypo or hyper, and of course thyroid cancer.

We thyroid cancer folks have sort of taken over!  But there have been posts by others with hashimotos but they never stayed around too long.  I think we just haven't had a "regular" DISer stick around on this thread to be there for those people.

Anyway, the Vitamin D issues are interesting.  Do you know what your levels were at their lowest point?  Any idea why it would cause a blood clot?  That's not one of the symptoms I've ever heard of but I guess when your muscles are spasming all the time, that might do it.  

I was given the 50,000 IU pill a few weeks ago and took it but woke up the next day will also sorts of muscle and joint aches that lasted about 48 hours.  I haven't taken another since because I've just had things going on, but I plan to try it again maybe next weekend.  In the meantime, I've been supplementing with 2000 IUs per day and that does not bother me (probably doesn't help either!!).


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## macraven

thanks Christine.

when i looked thru the thread some years ago, it seemed to go from basic thryroid issues, treatments, education of it to more serious issues with cancer of the thyroid.

i didn't feel qualified to add on to the conversations but if is no problem, i would like to stick around here for while.
nice group of people here.

my first level after the alpha 25 test was 7.
after 7.5/8 months of 50,000 iu weekly, my vit d level rose to 46.

endo was satisfied and i was taken off of it.
less than 8 weeks off of ergo, vit d level is 15.
now back on ergo same dose once weekly.
plan is to double the dose and take it twice a week in the near future.

my thyroid doseage was cut back in July by the endo.
said my levels were too  high again.

the hospital doc told me and my doctor that the blood clot came from the above problems.
some correlation there.
i haven't figured it all out yet.

i go back again in late november to the endo.
after i get back from my trip, which i leave 8 days from now, i will deal with my medical issue in more depth.

i was in the motherland last october and again in this past January.
i got a lot of sunshine both visits.
i would have thought that amount of sun i was getting would help my vit d levels rise.
i won't be re tested until weeks after my next trip.

i'm open to any suggestions or thoughts any of you may have.

came back to add that both of my endos told me muscle cramping in the shoulder, calf is a sign of low vit d.


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## angwill

Macraven,

I had hypothyroidism and then Hashimoto's for a lot longer than I have had cancer.  They found my thyroid issues almost 20 years ago and my thyroid cancer last year.  Don't feel like you don't belong here.  I am so glad you brought your information here.  I was only guessing my cramping was due to my low vitamin D after my cancer surgery. Now you informed me that my theory was true.  They only found one parathyroid missing after my surgery so both my calcium and vitamin D plumeted and I was only told to take OTC calcium and Vitamin D and was lucky that brought my levels up to normal.  I think my body had to compensate to working on 3 parathyroids when the one was taken out with the thyroid surgery.  I will have to keep in mind the clotting issues too.  It is good to be informed. 

I hope your doctors are doing periodic ultrasounds on your thyroid as well?  Hopefully you can get that vitamin D level under control and that you have had your calcium levels checked as well?

PS. I have seen your posts in the all star sports thread and the Chicago thread over the years.  Always found you a very welcoming person with some good ideas and information to share.  

Angela


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## Christine

macraven--

So when you stopped the 50,000 IUs of Vitamin D, did you go on a daily maintenance dosage or just stop completely?

I believe that once you are found to be deficient, it is a lifelong thing.  My doctor told me that the 50,000 IUs are to "fill up the bucket" because the lower doses won't do that but once it's full and you get an acceptable Vitamin D level, that you should be able to keep it up with 2,000-5,000 units daily after that.  I wonder...

As far as being in the sunshine--it works, especially if you are under 50, and it gets stored but not for long.  Maybe a week in the sun will keep you levels up for 3 weeks or so.


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## SingingMom

Christine said:


> macraven--  So when you stopped the 50,000 IUs of Vitamin D, did you go on a daily maintenance dosage or just stop completely?  I believe that once you are found to be deficient, it is a lifelong thing.  My doctor told me that the 50,000 IUs are to "fill up the bucket" because the lower doses won't do that but once it's full and you get an acceptable Vitamin D level, that you should be able to keep it up with 2,000-5,000 units daily after that.  I wonder...  As far as being in the sunshine--it works, especially if you are under 50, and it gets stored but not for long.  Maybe a week in the sun will keep you levels up for 3 weeks or so.



Christine - my internist told me the same. She found me very deficient and put me on mega dosage,but once it came up to normal levels, I have continued on 3000-5000.  I could only find 1000, 2000, or 5000 dosage, so I went with the 5000 because I'm lazy and already take synthroid, Bp medication and lexapro daily. Lol. Too many pills to take 3 1000 or a 1000 & 2000.  I know, I'm silly. Lol

"SingingMom" ....Sent from my iPad using DISBoards


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## macraven

no, when the endo took me off the ergo, she said to take 5,000 iu total a month of otc, Vit d 3.

a total of 5,000 a month did not keep me at normal levels.

back on the ergo and go back late november for check up.

my T3/4 and TSH were good reads from last week.
i have been cut back from a high of 1.75 daily synthroid to now 1. per day 6 days then and i do half pills on day 6 and 7.

it is difficult to find a good endo that is taking new patients.
i'll be staying with this endo for the next year.
i try to work with the doc and if all fails after the second year, i look for another one.


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## macraven

SingingMom said:


> Christine - my internist told me the same. She found me very deficient and put me on mega dosage,but once it came up to normal levels, I have continued on 3000-5000.  I could only find 1000, 2000, or 5000 dosage, so I went with the 5000 because I'm lazy and already take synthroid, Bp medication and lexapro daily. Lol. Too many pills to take 3 1000 or a 1000 & 2000.  I know, I'm silly. Lol
> 
> "SingingMom" ....Sent from my iPad using DISBoards



that's a lot of pills to take each day.......!

i checked out walmart mail order for OTC vit d 3.
prices were much better than what i could find in the stores.

singing mom, how long were you on the mega dose before you went non script?
did your levels hold well then?


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## SingingMom

macraven said:


> that's a lot of pills to take each day.......!  i checked out walmart mail order for OTC vit d 3. prices were much better than what i could find in the stores.  singing mom, how long were you on the mega dose before you went non script? did your levels hold well then?



You know, I don't remember how long - maybe a month?  It was a while ago.  So far I'm holding well.  I go for my thyroid blood work this week, but will need to see my internist to check everything else. Last year my cholesterol was creeping up. Lol

Tomorrow mammo and breast ultrasounds. Fun fun fun..l

"SingingMom" ....Sent from my iPad using DISBoards


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## angwill

I just realized I am on 4000 iu vitamin D3 daily.  Thought I was only on 2000 for some reason.  McRaven 5000 vitamin D per month is not going to keep those D levels up.  I would think you should be on that daily?  If I miss my vitamin D for a couple days I start cramping up right away.  

I have a question for anyone with low D levels, do you get super itchy skin when your levels are low?  

Singing mom,  Good luck with the bloodwork and mammo.  I am glad I got mine done earlier in the year.


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## macraven

angwill, the endo started me back on 50,000 ie weekly.


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## Christine

angwill said:


> I just realized I am on 4000 iu vitamin D3 daily.  Thought I was only on 2000 for some reason.  McRaven 5000 vitamin D per month is not going to keep those D levels up.  I would think you should be on that daily?  If I miss my vitamin D for a couple days I start cramping up right away.
> 
> I have a question for anyone with low D levels, do you get super itchy skin when your levels are low?
> 
> Singing mom,  Good luck with the bloodwork and mammo.  I am glad I got mine done earlier in the year.




I do have super itchy shins and also my back.  But I had not attributed it to low Vitamin D.  I just thought I had dry skin.  I can't say that it has really gotten better with the Vitamin D supplementation.  Maybe a little.  But it also gets better in the summer anyway due to the humidity.


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## branv

Hi everyone! Hoping you can share your wisdom once again. We finally have a date for my thyroidectomy, and I was wondering if any of you can impart some tips. Things that either helped you a lot during recovery, things you'd have done differently or things you wish you'd known about.  I've been surprised to not find much regarding this online.

One particular question I have is if anyone found that doing gentle neck stretches helped to reduce the muscle pain and stiffness everyone reports having.

The good news is that I gave myself permission to find a new ENT. My original one did a lot to help me, so I felt awful. But there were just some red flags I couldn't keep ignoring (y'know, if someone planning to cut into your throat isn't motivation to reevaluate your relationship, I don't know what is). The best part is that since I have to go into the hospital alone while DH watches our 1 yo, switching ENT means I can now be at the hospital 10 minutes from our house rather than the one 45 miles away in dense traffic. HUGE relief. 

I was told it's an overnight minimum at the hospital, that I will have drains, and to not lift anything over 10 pounds for 10 days (which means my son too, sniff sniff).  Other than some verbiage about wound care, to eat normally, yadda yadda, it's all very dry and limited medical advice. I could definitely use some advice!


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## luvmarypoppins

Singing Mom - hope your mammo and ultrasound turned out well

ang - I used to have really itchy skin. That was before dr.waste my time couldnt diagnose me with anything correct. I told him, I have super itchy skin and it feels like someone s poking and stabbing me like a vodoo doll. He said, oh maybe its just allergies. Um, no it was a total lack of vitamin d and severe anemia. He later found out after he finally did my blood work. Since my thyroidectomy the endo has had me on the 50,000 iu weekly and I have no itchiness except for winter time and that is only sometimes. 

branv - I am glad you finally got a date for your surgery. I was not the typical patient so my advice wouldnt probably be all that good. I had 2 drains, one came out before I left the hospital. Nothing would help the pain I had so I cant comment on the neck exercises. I unfortunately will have pain the rest of my life due to surgeon #3 surgery to save my life. 

Maybe a neck pillow would help. I know others said they didnt have issues, but I had to eat alot of soft food for a while, bread, salad and french fries were def. out for me.

If you need to take pain meds, take them. I just wanted to sleep alot. My voice was hoarse for weeks but I had vocal chord bruising too.

Wishing you all the best. I am glad you found a new ent that you like and feel comfortable with.  Hang in there


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## angwill

branv said:


> Hi everyone! Hoping you can share your wisdom once again. We finally have a date for my thyroidectomy, and I was wondering if any of you can impart some tips. Things that either helped you a lot during recovery, things you'd have done differently or things you wish you'd known about.  I've been surprised to not find much regarding this online.
> 
> One particular question I have is if anyone found that doing gentle neck stretches helped to reduce the muscle pain and stiffness everyone reports having.
> 
> The good news is that I gave myself permission to find a new ENT. My original one did a lot to help me, so I felt awful. But there were just some red flags I couldn't keep ignoring (y'know, if someone planning to cut into your throat isn't motivation to reevaluate your relationship, I don't know what is). The best part is that since I have to go into the hospital alone while DH watches our 1 yo, switching ENT means I can now be at the hospital 10 minutes from our house rather than the one 45 miles away in dense traffic. HUGE relief.
> 
> I was told it's an overnight minimum at the hospital, that I will have drains, and to not lift anything over 10 pounds for 10 days (which means my son too, sniff sniff).  Other than some verbiage about wound care, to eat normally, yadda yadda, it's all very dry and limited medical advice. I could definitely use some advice!



Branv.  I don't remember if you have thyroid cancer or goiter or what?  My thyroidectomy was done because of cancer.  The surgery for me was a breeze it was the TSH suppression and going into hypohell then the RAI treatment that were the worst for me.  

What I found was that I read all these things about the pain, possibly losing my voice or my parathyroids that would cause me to be on medication for low calcium for life etc etc.  What actually happened is that I must have been the most fortunate thyroid patient ever.  I only lost one parathyroid so I can take OTC calcium and vitamin D instead. From what I read because of my hoshimoto's ripping apart my thyroid it would be a mess and more likely to lose those parathyroids.  I had absolutely 0 pain from day one a not even a slightly scrathy voice or slightly sore throat.  I didn't bother taking my pain meds after the first day.  No pain or sorness in my neck at all.  My surgeon looked at me like I had three heads when he saw me after surgery and asked my pain level and I said 0. That said I have been told by doctors in the past that I have a very high pain tollerance.  I didn't think so with some of the back pain I have had over the years.  So prepare for the possibilities but you may just be surprised.  Just realized you said you will have a drainage tube.  Are they taking out lymph nodes as well?  I didn't have a drainage tube but only had my thyroid removed no lymph nodes so maybe that makes a difference?  It is an overnight in the hospital while they watch your calcium levels to make sure you don't go too low which can cause painful cramping and other issues.  

Sometimes firing a doctor can feel liberating.  I fired the doctor who found my cancer right away and found a new doctor I loved.  Got my ENT after surgery and will fire him as soon as I am regulated and will try to find a GP that feels comfortable treating me.  There are no other ENT's anywhere near me but I feel like I know more than him anyway.  He charges $169 a visit and lately it is me who tells him what meds I want tweeked and what labs to do.  It is frustrating to pay someone to do nothing and then have to wait around all day on a Wednesday for lab results and if you miss his call you rotate to the next Wednesday's calling list, even when you call him back right after his call.  This is his new method and I am not pleased I won't even go into how many phone calls it takes to get meds called in or lab orders faxed.  His office staff is as good as he is at their jobs. lol  I hope he is much better as a diabetes and weight loss doctor which most of his patients see him for.  

I am sorry about your baby and not being able to lift him.  Also that you have to be alone.  Honestly, I would not have minded being alone when coming off those meds after surgery.  Oh you might want to bring with a note pad and pen or pencil for the nurses after and ask for some ice chips if they don't give you any.  

Do you have any other specific questions?  Sorry I don't know anything about neck exercises. Maybe others here have better advice.

Oh and you tube has some really good video diaries of people who have had thyroidectomy's who record the before and after telling how they feel and what helps them.  

Good luck.  Ang


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## angwill

luvmarypoppins said:


> Singing Mom - hope your mammo and ultrasound turned out well
> 
> ang - I used to have really itchy skin. That was before dr.waste my time couldnt diagnose me with anything correct. I told him, I have super itchy skin and it feels like someone s poking and stabbing me like a vodoo doll. He said, oh maybe its just allergies. Um, no it was a total lack of vitamin d and severe anemia. He later found out after he finally did my blood work. Since my thyroidectomy the endo has had me on the 50,000 iu weekly and I have no itchiness except for winter time and that is only sometimes.
> 
> branv - I am glad you finally got a date for your surgery. I was not the typical patient so my advice wouldnt probably be all that good. I had 2 drains, one came out before I left the hospital. Nothing would help the pain I had so I cant comment on the neck exercises. I unfortunately will have pain the rest of my life due to surgeon #3 surgery to save my life.
> 
> Maybe a neck pillow would help. I know others said they didnt have issues, but I had to eat alot of soft food for a while, bread, salad and french fries were def. out for me.
> 
> If you need to take pain meds, take them. I just wanted to sleep alot. My voice was hoarse for weeks but I had vocal chord bruising too.
> 
> Wishing you all the best. I am glad you found a new ent that you like and feel comfortable with.  Hang in there



Thanks LMP.  I just notice that as my Vitamin D increased my intense itching got better but still never went away completely.  I also notice if I forget to take my Vitamin D the cramping and intense itching come back. It was so bad I scratched my skin to bleeding and would use my big toe nail to scratch my calf and foot to the point I found out I pulled it off and am toe nailess still.  My endo tells me everything is not thyroid related to tell my GP.


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## SingingMom

Lmp - thanks!  Mammo & ultrasound status quo but I must admit, this time my mammo was total agony! I am petite but well endowed so I am used to being uncomfortable but yoza, this time it was very painful. I do like this facility though, since radiologist reads everything immediately. 

Bravn - I had my surgery 22 years ago. Stayed in hospital two nights. Drains removed before I went home. Two things I can advise or just mention:

1. My sister, an RN who used to run a recovery room, told me when I awoke from the surgery they would ask if I was in pain. She told me to say yes - since they would give me something in recovery and watch me more closely than once I was in my regular room. They gave me morphine and I was fine the rest of my stay!

2. Be prepared for multiple blood tests to check calcium levels etc. seemed like every time I sort of got comfortable, someone else came to draw blood. I bruise easily and both arms were black & blue from wrist to past elbow.  That sort of caught me off guard.  Also having to wear a beck collar for a day was odd feeling. 

The surgery & post op were ok.  Afterwards having to go hypo to have the body scan was much worse. Luckily I don't believe they do it gaff way anymore!

Good luck and be well!


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## Christine

My surgery was about 19 years ago so my memory is vague.

My surgeon told me that for the first 24 hours, you will like you have a very bad sore throat.  And that it rapidly goes away.  He was absolutely correct.  I did get demerol in my hospital room and that didn't go well for me.  I would just stick with ibuprofen or something if I had to do it all over again.

I had one night overnight.  I was told not to drive for a week (as was my friend who just had the surgery).  They don't want you to have to rapidly move your neck.  In fact, they'd prefer you not be spending a lot of time in the car.  It would be very bad if you got into a accident.

I did lose a parathyroid and had no issues with calcium levels.  My friend did NOT lose a parathyroid and had calcium issues for about 6 months.  You just never know.  She's fine now.


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## branv

Thank you so much everyone. I definitely hope I'm one of the ones who recover easily. I know my csection was surprisingly easy, and like thyroid surgery, that is another you hear everything from "not too bad" to "it took weeks to recover and a lot of pain." Your suggestions are being stored in my brain (though these days, my brain is so sieve like, I'm grateful I can also revisit here and reread ).

My surgery is due to Hashimotos with multinodular blabbity blah. I have three nodules on the right about 2 cm ea, one of which came back suspicious/indeterminate with hurthle cells, and three small nodules on the isthmus/left side. I was hypo for a bit then asymptomatic for years, but then the nodules started growing again and pregnancy sent it into a tailspin. My labs 2 months ago showed my TSH of 10 was down to 3.2, but my endo wanted me under 2.9 at the least. She upped my synthroid, and my latest test last week showed me at 6.6!! I mean, what the... My meds gets upped and my TSH gets worse?! Yep, this is one roller coaster I'd like off of, please.

One of the reasons I fired my ENT is that she insists on giving you your biopsy results face to face. Which sounds great, except, even if your biopsy results come in a week later, you usually have to wait another 3 weeks to get an appt. I've been through two biopsies with her now, and I couldn't do it again. It was cruel and my anxiety almost killed me. I asked my new ENT about that, and he rather explosively said, "No way would I do that to a patient!! That's just mean!"


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## SingingMom

I understand your frustration with your original dr. But I have one better - my endo all along thought my nodule was due to treatment from Graves Disease but did the biopsy anyway.   
Called me AT WORK and said "I'm really surprised, but it's cancer."  @@


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## macraven

that's awful !


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## angwill

Here is an article about why we should have our vitamin D levels checked along with the calcium especially after surgery.  http://www.henryford.com/body.cfm?id=46335&action=detail&ref=2133

branv that is cruel.  Reminds me of my first doctor I fired and I wish I could have done a charge back for her costs. lol  Glad you found a much better ENT and that you have choices where you live.  

From what I have read with Hashimoto's some people have the ups and downs in TSH numbers with that disease.  I didn't have that but many do.  

Let us know when you go in for surgery and how your doing afterward.  If you don't mind prayers I will send them your way.


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## luvmarypoppins

I never commented on the previous posts.

I too got a call that I had cancer. It wasnt even from the biopsy, it was from a pet scan and it wasnt even the ent surgeon, because originally I went  to a thoracic surgeon because my ct scan showed a mass in my chest. It was really in my thyroid but so huge I think it looked like it was in my chest on the ct scan. 

Yup, I never saw that surgeon again but I would probably be wanting to hear it face to face but no way would I want to wait for 3 weeks like you had to branv. That is torture and cruelty  for sure. 

Well tomm. my dh is going for blood tests for his thyroid. The work physical dr. said his appears enlarged. So he went to our reg. md, yup dr. waste my time who couldnt even figure out I had cancer. He never calls you back with test results, sigh. Good luck dh. I told him not to go there and to go to the univ. hosp. instead but he wouldnt listen to me. 

I am going to have to book the bone scan soon I am behind.

Also going to start planning our dec. disney trip. So far it looks like we will stay at the Swan. The disney hotels are just too expensive even with dh ff miles. The Swan is a better deal for the miles. I like MVMCP and the Candlelight Processional.

My 2 ds continue to look for jobs. Ds 1 nothing yet, but his basketball coaching will start soon for the highs school and he goes to his unpaid internship 3 days a week but he is really not learning what he wanted to.

Ds3 is applying for nursing jobs like crazy but nothing yet. He is being a recess aid and gym teacher at his old grade school. Its a private school so they are not caught up in all the rules so its good for now. He also is now an officially licensed nurse in in Florida!!! So he has been looking at jobs for there too. He loves it warm and hot like me and loves the ocean too. 

Check in when you can. Hope everyone is doing well.


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## Holly Quinlan

Hello everyone! sorry for the long post! I've been putting off getting checked out but think I'm finally going to schedule an app with my PCP. 
My main symptom is excessive hair loss I don't even know how to describe how bad it is I just chopped it all off the other day. Also I'm only 26 and I'm willing to bet that I'll be fully gray with in the next few years. I've been getting hot more than usual and the last few times I've randomly checked my temp I've had a low grade fever(normal for me was around 97.7) I've always been a laid back person and never worried about anything but now I feel nervous/restless all the time causing my heart to feel like its about to pound out of my chest.  dry skin around all my joints and random pains in my legs/arms. Does this sound like a thyroid issue?

What symptoms did you have that caused you to get checked out and how long did you have them before you were checked?


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## angwill

luvmarypoppins said:


> I never commented on the previous posts.
> 
> I too got a call that I had cancer. It wasnt even from the biopsy, it was from a pet scan and it wasnt even the ent surgeon, because originally I went  to a thoracic surgeon because my ct scan showed a mass in my chest. It was really in my thyroid but so huge I think it looked like it was in my chest on the ct scan.
> 
> Yup, I never saw that surgeon again but I would probably be wanting to hear it face to face but no way would I want to wait for 3 weeks like you had to branv. That is torture and cruelty  for sure.
> 
> Well tomm. my dh is going for blood tests for his thyroid. The work physical dr. said his appears enlarged. So he went to our reg. md, yup dr. waste my time who couldnt even figure out I had cancer. He never calls you back with test results, sigh. Good luck dh. I told him not to go there and to go to the univ. hosp. instead but he wouldnt listen to me.
> 
> I am going to have to book the bone scan soon I am behind.
> 
> Also going to start planning our dec. disney trip. So far it looks like we will stay at the Swan. The disney hotels are just too expensive even with dh ff miles. The Swan is a better deal for the miles. I like MVMCP and the Candlelight Processional.
> 
> My 2 ds continue to look for jobs. Ds 1 nothing yet, but his basketball coaching will start soon for the highs school and he goes to his unpaid internship 3 days a week but he is really not learning what he wanted to.
> 
> Ds3 is applying for nursing jobs like crazy but nothing yet. He is being a recess aid and gym teacher at his old grade school. Its a private school so they are not caught up in all the rules so its good for now. He also is now an officially licensed nurse in in Florida!!! So he has been looking at jobs for there too. He loves it warm and hot like me and loves the ocean too.
> 
> Check in when you can. Hope everyone is doing well.



I don't so much mind that I found out about cancer in a phone call since it saves a trip and the charges for an appointment it was that the doctor should have been the one to do it since they are the ones with the knowledge and the ones who make the decisions.  They should never wait like they did to Branv that is neglect.  

Wow on how huge yours was.  

How did your DH visit go for his thyroid?  Good I hope.  

Good luck with the bonescan too.  

I do hope your boys find their dream jobs soon.


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## angwill

Holly Quinlan said:


> Hello everyone! sorry for the long post! I've been putting off getting checked out but think I'm finally going to schedule an app with my PCP.
> My main symptom is excessive hair loss I don't even know how to describe how bad it is I just chopped it all off the other day. Also I'm only 26 and I'm willing to bet that I'll be fully gray with in the next few years. I've been getting hot more than usual and the last few times I've randomly checked my temp I've had a low grade fever(normal for me was around 97.7) I've always been a laid back person and never worried about anything but now I feel nervous/restless all the time causing my heart to feel like its about to pound out of my chest.  dry skin around all my joints and random pains in my legs/arms. Does this sound like a thyroid issue?
> 
> What symptoms did you have that caused you to get checked out and how long did you have them before you were checked?



Your message is short.  Are you used to Twitter? lol  Your symptoms do sound like thyroid and a lot of times it is beauticians when cutting a persons hair that notice when someone has thyroid issues.  I lose hair even being medicated if I am too far to one end or the other of suggested levels for TSH.  I just added Cytomel a T3 med to my levothyroxine and am finally growing my hair back.  I have a whole lot of about inch long hair sticking up. lol  I too always ran a low grade fever when on the hypo end of the numbers but on the hyper my body temp regulates more and my body can handle the change in temps otherwise I am freezing all the time and running a low grade fever.  Anxiety and heart pounding can happen too.  Dry skin is typical so keep it hydrated every day so it doesn't get too bad.  The joint pain could also be your vitamin D going low along with your thyroid so ask them to check calcium and vitamin D that are regulated by the thyroid.  Good luck and let us know how it goes.


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## Holly Quinlan

angwill said:


> Your message is short.  Are you used to Twitter? lol  Your symptoms do sound like thyroid and a lot of times it is beauticians when cutting a persons hair that notice when someone has thyroid issues.  I lose hair even being medicated if I am too far to one end or the other of suggested levels for TSH.  I just added Cytomel a T3 med to my levothyroxine and am finally growing my hair back.  I have a whole lot of about inch long hair sticking up. lol  I too always ran a low grade fever when on the hypo end of the numbers but on the hyper my body temp regulates more and my body can handle the change in temps otherwise I am freezing all the time and running a low grade fever.  Anxiety and heart pounding can happen too.  Dry skin is typical so keep it hydrated every day so it doesn't get too bad.  The joint pain could also be your vitamin D going low along with your thyroid so ask them to check calcium and vitamin D that are regulated by the thyroid.  Good luck and let us know how it goes.


Thank you! My post looked much longer wren I was typing it out. I have an appointment with my PCP tomorrow afternoon so hopefully soon I can get some answers.

Sent from my iPhone using DISBoards


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## macraven

After 17 days in Orlando, I fly back home tonight.

I should have a higher Vit D level with all the sun I have taken it.
Never missed a dose of my ergo while here.

Hope all of you are fine


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## angwill

I got some bad news the other day.  I started hemorrhaging so went to gyne and they did a uterine biopsy and I found out I now have endometrial aden carcinoma.  I am going to have to research if that is a cancer that can happen after thyroid cancer.  Does anyone here recall hearing that?  I remember breast was one for sure.

Thanks,
Ang


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## SingingMom

angwill said:


> I got some bad news the other day.  I started hemorrhaging so went to gyne and they did a uterine biopsy and I found out I now have endometrial aden carcinoma.  I am going to have to research if that is a cancer that can happen after thyroid cancer.  Does anyone here recall hearing that?  I remember breast was one for sure.  Thanks, Ang



So sorry to hear that, Ang. Hopefully it was caught early and you will be fine. Prayers for you!

"SingingMom" ....Sent from my iPad using DISBoards


----------



## angwill

SingingMom said:


> So sorry to hear that, Ang. Hopefully it was caught early and you will be fine. Prayers for you!
> 
> "SingingMom" ....Sent from my iPad using DISBoards



Thanks for the prayers.  Yeah, uterine is one that makes sure you know it's there when it is right away so I am sure it's early.  I always wondered why they say thyroid is an easier cancer because hypohell was no picnic for me so I guess I will be finding out if other cancers with chemo and radiation are any worse.  

Ang


----------



## luvmarypoppins

ang - I am so sorry to hear that you are going through this.  Lots of prayers coming your way.

I dont know if I have heard that, but I did think I heard about breast cancer and I have read I have a higher chance of getting leukemia.

I had some issues post op, first was instant menopause and then I cant remember when but I too started getting terrible cramps and bleeding that was scaring me because of the instant surgical menopause as they called it.

The ob/gyn I went to did some testing. I dont think she did an actual endometrial biopsy. Just a pap and internal sono. She concluded that sometimes our bodies just go through things like this and there was nothing wrong. I havent had any more incidents like that yet again, but if they happened they wouldnt surprise me.

I hope your dr and car team get a good treatment lan in pace for you so you can get the best treatment possible. 

Hang in there! You have already proven what a strong fighter you are! We are all here for you


----------



## macraven

angwill said:


> I got some bad news the other day.  I started hemorrhaging so went to gyne and they did a uterine biopsy and I found out I now have endometrial aden carcinoma.  I am going to have to research if that is a cancer that can happen after thyroid cancer.  Does anyone here recall hearing that?  I remember breast was one for sure.
> 
> Thanks,
> Ang



i don't know anyone that has gone thru that after the surgery you have had prior but can say you are in my prayers.

thinking of you.


----------



## angwill

Thanks.  Researching it I found quit a group of people who have had the same but nobody's doctors feel they are related to one another.  Although it does tend to grow because of excess estrogen which is created by the same system that makes our thyroid function so it does make me wonder.  

Had my mamo in May and thank God don't have to worry about that one.  Although it would be a lot less invasive if I had the choice to switch I suppose but that's not how it works.  

LMP, My gyne thought my bleeding and early menopause was most likely caused by my thyroid when I went in for the biopsy.  It was the day after my first thyrogen shot in April that I got my bad cramps and serious bleeding and I natually blamed it on the meds then.

I am having to travel a couple of hours for treatment since there are not Gyn/oncologists anywhere near me.  I am hoping they are good and have a friend in the medical field checking them out for me.  I am like I was with my thyroid though and just want the crap out of me. Only then will I feel better.


----------



## Christine

angwill,

I'm sorry to hear your news and that you have to deal with yet another cancer.  It sounds like you are taking the bull by the horns and you're getting your plan in place on how to tackle this and that's the good news.  And if there is ever any "positive" things about this for you, it's that you have had the experience dealing with one cancer already.  You know what you have to do, mentally, and you have already learned from thyroid cancer that you need to be your own medical advocate.  

I think that's a huge learning curve for most people when the are first diagnosed with any cancer and it takes them a long time until they get medically savvy about their condition.  

Please know that we are all pulling for you and please keep us updated on this even though it's a thyroid thread!!!


----------



## angwill

Christine said:


> angwill,
> 
> I'm sorry to hear your news and that you have to deal with yet another cancer.  It sounds like you are taking the bull by the horns and you're getting your plan in place on how to tackle this and that's the good news.  And if there is ever any "positive" things about this for you, it's that you have had the experience dealing with one cancer already.  You know what you have to do, mentally, and you have already learned from thyroid cancer that you need to be your own medical advocate.
> 
> I think that's a huge learning curve for most people when the are first diagnosed with any cancer and it takes them a long time until they get medically savvy about their condition.
> 
> Please know that we are all pulling for you and please keep us updated on this even though it's a thyroid thread!!!



Thanks Christine.  You are so right that we have to really become medically savy for our own benefit which is sad because we pay the so called specialists so much money it should be covered in the cost. lol  Yeah right.  I certainly learned why I was always so level headed and the one family dumped all the major problems on to fix.  I was in training for my own health war.   I deal with the emotional issues after the fight is over.  

I am so glad I brought it here because friends and family tend to treat these things with pity but other cancer warriors know how to not do that but instead to instill strength.  Thanks everyone.

Ang


----------



## 1Grumpy9

macraven said:


> After 17 days in Orlando, I fly back home tonight.
> 
> I should have a higher Vit D level with all the sun I have taken it.
> Never missed a dose of my ergo while here.
> 
> Hope all of you are fine



I am just getting back into this thread...I have the issue of low blood calcium and I understand completely about leg and abdomen cramping...I get mine in my ribs and sometimes it gets so bad, that I look like I am just rustling around.  My endo can't believe I am not going to the hospital with my levels being around 6.5.  My PCP thinks that my parathyroid hasn't been working for longer than having it removed since it was being crushed from my thyroid.  I take Rocaltrol for vitamin D and I also have a liquid I take (calcium carbonate...aka Milk of Magnesia).  I don't take that as regular as the Rocaltrol because the taste of it bothers me.  I also have a large supply of Tums handy.


----------



## angwill

1Grumpy9 said:


> I am just getting back into this thread...I have the issue of low blood calcium and I understand completely about leg and abdomen cramping...I get mine in my ribs and sometimes it gets so bad, that I look like I am just rustling around.  My endo can't believe I am not going to the hospital with my levels being around 6.5.  My PCP thinks that my parathyroid hasn't been working for longer than having it removed since it was being crushed from my thyroid.  I take Rocaltrol for vitamin D and I also have a liquid I take (calcium carbonate...aka Milk of Magnesia).  I don't take that as regular as the Rocaltrol because the taste of it bothers me.  I also have a large supply of Tums handy.



Low calcium is very serious.  From what I was told before my surgery is it can effect the heart muscle if it is too low.  I am glad you are seeing someone for it and I hope they get those levels up.  I take OTC calcium pills with vitamin D.  Ask your doctor about taking tums as often as you do.  I can't remember where I heard that it shouldn't be taken daily but it could be bad info too.


----------



## 1Grumpy9

angwill said:


> Low calcium is very serious.  From what I was told before my surgery is it can effect the heart muscle if it is too low.  I am glad you are seeing someone for it and I hope they get those levels up.  I take OTC calcium pills with vitamin D.  Ask your doctor about taking tums as often as you do.  I can't remember where I heard that it shouldn't be taken daily but it could be bad info too.



When I left the hospital after my surgery taking 20 Tums a day...After I got on the meds, I just keep the Tums around for when I feel when I am low.  I get a tingle in my cheeks and my thumbs will start tightening.  My PCP thinks that my parathyroid was damaged way before my thyroid was taken out.  When my endo checks me every 3 months she is amazed how my body has adapted.


----------



## luvmarypoppins

ang - how are things going? Thinking of you and sending you healing prayers and prayers for strength.

macraven - how was your trip? I am food obsessed so I like to hear where people eat etc. 

singing mom - are you singing for christmas?

Christine - reading anything good. I am reading an amish christmas story. I won it on a blog and the author signed it for me! I also won 2 more books from goodreads that havent come yet. I have quite a few other in the tbr pile that i have won from blogs that I need to read. 

Well on the good news front, ds3 got a job as a sub school nurse in our district. They only want him doing the middle, jr high and high school as each of those have 2 nurses on duty. The elementary schools only have 1 and they say he doesnt know all the rules and procedures yet. Then one of those nurses works at a pre school for physically challenged kids with trachs etc so he is going to call about that job as a sub too.    Ds1 is still looking for a job and ds2 is still working and finishing up his contract job. My dh is back from seattle and calif. He took ds 2 with him for the seattle leg. Now he is going to Baltimore next week. 

I am working on the disney trip. I booked the plane today and changed one adr. Next is the christmas party tickets and hotel. 

Being the procrastinator that I am,  I still need the bone scan and a flu shot. 

Everyone check in when you can. Thinking of you all.


----------



## angwill

luvmarypoppins said:


> ang - how are things going? Thinking of you and sending you healing prayers and prayers for strength.
> 
> macraven - how was your trip? I am food obsessed so I like to hear where people eat etc.
> 
> singing mom - are you singing for christmas?
> 
> Christine - reading anything good. I am reading an amish christmas story. I won it on a blog and the author signed it for me! I also won 2 more books from goodreads that havent come yet. I have quite a few other in the tbr pile that i have won from blogs that I need to read.
> 
> Well on the good news front, ds3 got a job as a sub school nurse in our district. They only want him doing the middle, jr high and high school as each of those have 2 nurses on duty. The elementary schools only have 1 and they say he doesnt know all the rules and procedures yet. Then one of those nurses works at a pre school for physically challenged kids with trachs etc so he is going to call about that job as a sub too.    Ds1 is still looking for a job and ds2 is still working and finishing up his contract job. My dh is back from seattle and calif. He took ds 2 with him for the seattle leg. Now he is going to Baltimore next week.
> 
> I am working on the disney trip. I booked the plane today and changed one adr. Next is the christmas party tickets and hotel.
> 
> Being the procrastinator that I am,  I still need the bone scan and a flu shot.
> 
> Everyone check in when you can. Thinking of you all.



Hi LMP. 

Thanks for asking about me.  Had my radical hysterectomy Monday.  I have a heck of a time breathing after anesthesia so was in for two nights instead of one.  I did find out that abdominal surgery hurts a million times more than thyroid, unfortunatly.  Then again I had no pain with my thyroid and went off pain meds 2 days after that surgery. I also have to give myself blood thinning shots twice a day and that stinks. The ride home over bumps was the worst of it.  I am feeling better every day.  Will need radiation at least but won't talk of anything else till after results are back.  They found some white speckles on my pelvic wall and other organs and freaked thinking it was cancer spread but a quick pathology check showed no cancer so they are thinking possible past virus but won't know till results come back.  So all in all I am still alive and feeling better every day so life is good.  

I am reading the giver right now and really enjoying it.  

That is so great that your son found a job even if it is temp.  A school nurse job sound like the best hours in that field. I at one point worked as a sub aide in a special needs classroom with nurses that took care of kids with trechs and feeding tubes.  I would help the nurse hold things and get them ready.  How lucky he is to be part of such a supportive and loving family.  Not everyone is so blessed. It also sounds like you are blessed to have such a responsible, loving son which also doesn't always happen.  

Get that scan and flu shot over and out of the way so you don't have to worry about them.  

Take care,
Angela


----------



## Christine

Good morning everyone!  This thread has been quiet lately but thanks to LMP for checking.  I always view it that if the thread is quiet, people are doing well.

angwill--glad that surgery is over.  I've never had abdominal surgery but, I agree that I have heard it is the worst!  I think *most* normal thyroidectomies are some of the easier surgeries but I think people really freak out about them because, after all, it is cutting your neck.  Sounds worse than it is!  I am hoping for a very good pathology report for you.

LMP--I have been reading a lot lately.  I found a ton of books that were reviewed and rated well so I put them on hold at my library and, one by one, they are coming in.  The bad part is when three of them come in and I have only three weeks to read them.  Pitfulls of free books I guess!!

Nothing I've read stands out.  They are just general fiction stuff.  I do have the new Amy Poehler book on hold so I'm looking forward to a little comedy.  

Healthwise I am doing okay and I don't see the endo until February.  The only thing I've got going on is that for the last 3 weeks I have been sleeping HORRIBLY.  I wake up every night around midnight (like clockwork) and I am HOT for hours.  Not full-up hot flashes.  Just hot.  I've never been one to be a "hot" person but I am now.  At 51, I assuming this is menopausal related.  I've just never read about hours of being hot.  It's weird.  It keeps me up most of the night.  Not sure what I"m going to do about it, though.  Maybe start a menopause thread?


----------



## SingingMom

Christine said:


> Good morning everyone!  This thread has been quiet lately but thanks to LMP for checking.  I always view it that if the thread is quiet, people are doing well.  angwill--glad that surgery is over.  I've never had abdominal surgery but, I agree that I have heard it is the worst!  I think *most* normal thyroidectomies are some of the easier surgeries but I think people really freak out about them because, after all, it is cutting your neck.  Sounds worse than it is!  I am hoping for a very good pathology report for you.  LMP--I have been reading a lot lately.  I found a ton of books that were reviewed and rated well so I put them on hold at my library and, one by one, they are coming in.  The bad part is when three of them come in and I have only three weeks to read them.  Pitfulls of free books I guess!!  Nothing I've read stands out.  They are just general fiction stuff.  I do have the new Amy Poehler book on hold so I'm looking forward to a little comedy.  Healthwise I am doing okay and I don't see the endo until February.  The only thing I've got going on is that for the last 3 weeks I have been sleeping HORRIBLY.  I wake up every night around midnight (like clockwork) and I am HOT for hours.  Not full-up hot flashes.  Just hot.  I've never been one to be a "hot" person but I am now.  At 51, I assuming this is menopausal related.  I've just never read about hours of being hot.  It's weird.  It keeps me up most of the night.  Not sure what I"m going to do about it, though.  Maybe start a menopause thread?



Christine- I am 52 and I am ALWAYS hot!!!  I constantly wake up at 3am (not midnight because I'm still up at that time!) and strip. Lol. I have a fan on my nightstand and use it year round. Luckily my husband doesn't mind!  I wear sleeveless clothes when I sing at church - all year round.   I can't remember a time when I wasn't like this- first blamed on my "hot Italian blood", then thyroid,- only now it's worse due to perimenopause.  @@.   If we do end up retiring to Florida, I will probably live in the air conditioning in the summer months!  Lol

LMP- yes, singing on Christmas Eve. . I sing a few times a month. I like our new director & he spaces the schedule out so I have a few masses that I can just sit in the congregation with my family and pray.  

I am also an avid reader - but I read fluff. Lol. Romance, biography.  Love to curl up with a good book - I spend my summer poolside with my books!

Went to endocrinologist a few weeks ago - she lowered my synthroid dosage to 100 mcg. She said after 22 years cancer-free, keeping my levels so suppressed will be more harmful to osteoporosis and heart disease. I just hope I don't go hypo. 


Ang- praying for good results. Abdominal surgery is the worse to recover from. I always said 26 stitches across my neck was a picnic compared to my c-section! 

Just made FP reservations for our January trip. Past three years we have been going to WDW instead of buying each other gifts we don't need.  DD graduates college this May. We cherish the time together!  

Stay well!

"SingingMom" ....Sent from my iPad using DISBoards


----------



## branv

I just had my thyroidectomy. Went very well, no complications,not much pain. 

But bc I am just prone to weirdness, apparently, here's a new one: my thyroidectomy results are inconclusive!  Same thing with FNA: suspicious nodule contained multiple hurthle cells with suspicious features (microfollilicular with nuclear enlargement, crowding), but had a big background of lymphocytes. The assumption was that the hurthle cells being in the presence of chronic thyroiditis was to be expected, the arrangement of them, however, was the suspicious part. Affirma couldn't rule anything out.

The pathology from the thyroidectomy showed no cancer in any other nodules or in any part of the thyroid or in the lymph nodes they removed. But pathology *still* can't rule out cancer within that one nodule. Which is confusing to me, bc I thought cancer was determined by how it acted. Either it has or hasn't tried to grow outside? How can you still not determine that? I've never heard of an inconclusive thyroidectomy!

So they've sent it on to Mayo for another opinion. I'm so ready to just know one way or the other. But also frustrated bc I don't know if I can at least assume that if they didn't find it anywhere else, if that means even if this is cancer it's micro or miniscule and at the very beginning? Or if I shouldn't breathe at least a little easier just yet.

Have you ever heard of this before? I'm baffled.


----------



## luvmarypoppins

branv - glad to hear your surgery is over but I am sure its hard waiting for the pathology results. Its good they are having it checked into further and you have it going to one of the best hosp. in the country!  I did have to wait a while for my pathology report too because they never saw anything quite like mine either. It was acually the two tumors and the rare variant. So hang in there and wishing you all the best with the path results.

ang - how are you feeling? I hope your pain is manageable. I am sure you are anxious for your pathology  report. I know stomach surgery is the worst.!! I think I am on my 7th one. 4 were right after my throidectomy when I had the emergency hernia and bowel resection. And these mesh repairs only last 10 years at the most so in 5 years or less I have to go through this all again. I am dreading it for sure. I was in the hosp. almost 3 days last time because my pain was uncontrolled. I finally had to go home with a scrip for just pain meds with not ylenol in it, just pure stuff I could take more often. Praying for youHang in there!

singing mom - sorry you had to change resorts, but I am sure you will have a great time. 

I finished booking the vacation yest. Did 2 reservations for the Swan and ordered the mvmcp tickets. At least I saved some money by cashing in dh ff miles for 3 nights of the hotel for free and then I also cashed in my southwest points to get one way free for me. Dh hasnt had a vacation since march and I sure hope he doesnt try to cancel on me. I told him I will just go myself. I am sure one of the ds will be happy to hop on board and come too. 

In the book I am reading the girl keeps talking about her hair coming out and always feeling tired. Hmm, I will laugh if they say she has a thyroid problem


----------



## FireflyTrance

I was just thinking today how tired I felt, probably due to my hypothyroidsim, and saw this thread and decided to post. I was diagnosed with hypothyroidsim back in 2012 while I was pregnant, and have been on medication ever since. Lately I am back to feeling tired and foggy-headed so I think my medication may need to be adjusted. Anyway just wanted to say hi, and I will post more in the future


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## angwill

BranV, wow that would be so frustration to have an inconclusive diagnosis.  I have read that spread means it went into and/or through the little section that connects both sides of the thyroid.  I do hope Mayo can solve the puzzle and I hope it is in your favor.  Mine was papillary tall cell variant and just one huge tumor all encapsulated thank God. 

LMP, You know all the worst pain was intestinal/gas and it hurt like hell and pain med couldn't touch it.  Since the intestinal pain passed after that first week I am rarely taking the pain meds and feel really good. Still recovering and have restrictions for 6 weeks but it is not nearly as bad as I thought it would be. I do hate having to give myself 2 shots a day of the blood thinner to prevent Deep Vein Thrombosis that is common when they do major abdominal surgery.  Had to cut and cauterize a lot of veins, arteries, and such.  I tell you one thing I am so extemely happy that I don't have to be in hypohell after surgery like with the thyroid.  

Sadly, my results came back worse than they thought with a really big tumor like with my thyroid and deep roots making it very likely to come back so I am on to 6 weeks 5 days a week of radiation.  This cancer sucks because it is so invasive.  I am a modest person so I have lost a lot of my dignity.  There is a ton more information about this cancer than thyroid and it gets a lot more respect.  Thyroid cancer should really be treated in a cancer center where everyone is so understanding and caring and you get a ton of support in every way.  Breast cancer gets the most respect and recongition of them all though.  I really am getting so much more information and the specialists are so much more knowledgeable about it than my endo that specializes in diabetes not thyroid cancer.  

FireflyTrance,  You know your body best and if you feel your thyroid is not right I will bet your right.  I hope your doctor can get it regulated better for you so you have more energy.


----------



## macraven

so sorry your results turned out they way they did.

prayers for you.


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## SingingMom

Ang- keep your positive attitude and fight.  Sounds like you are getting good information & support. Praying for a full recovery!!

"SingingMom" ....Sent from my iPad using DISBoards


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## angwill

Thank you.  It is but a bump in my road.  I keep telling myself that.


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## luvmarypoppins

Firefly - I would def. get a blood test and check your levels to see if you need a med adjustment. You are the best judge of how you and your body feels. 

ang - so sorry the results were not the best. You are a fighter and you can do this! Its a different kind of experience, but it sounds like you have a great and knowledgeable and caring care team on your side too. So to heck with the modesty and I know you will do all you can do to kick this cancer to the curb!! We are here for you anytime you want to vent etc. Sending you lots of prayers and virtual


----------



## macraven

LMP, is that purple tag new?

my mind has been in a blow for days and just noticed it thinking, i didn't see that before..........or did i..........lol


----------



## luvmarypoppins

macraven said:


> LMP, is that purple tag new?
> 
> my mind has been in a blow for days and just noticed it thinking, i didn't see that before..........or did i..........lol



No that is not new. I have had it forever. I was actually commenting on some thread that my husbands antenna topper got stolen and I said I was debating whether or not to put a new one on his van because I didnt know if it would get stolen again. Later, he found it in the van and said he forgot that he took it off because it was either windy or he was going to the car wash? Something like that. 

My other 2 tags are from the breast cancer girls The 2nd one was when our central air broke I think, it was so hot in here and then it finally got fixed. It was really suppose to say - look who is the coolest sister here now.

The third one is because I am always giving virtual hugs to the breast cancer gals.They inspire me. I have met 3 of them at disney and another girl who's mom is a survivor. 

Its funny because now in real life I can only give a R arm hug. I cant lift up the L arm because of the nerve being cut from the 2nd tumor running through it. I am lucky if I can get it up 50%.


----------



## branv

I'm still in shock. It's benign. I spent 24 hrs thinking it was aggressively malignant due to a mixup (they sent me the original path report, not the updated path report from the more advanced lab). I literally started shaking all over when the doctor told me. I didn't even know good news could make you shake. I feel elated, a little silly for all the sleepless nights. I feel a little guilty for asking for help and advice others need more. I don't know why. 

I know I don't really know you ladies, yet your experience and guidance was unbelievably helpful to me. Funny how that can be.

Angwill, I'm so very sorry you are going through another fight. And incredibly emotional that you had the kindness to respond to my questions when you had your own battle. I am sending you a million healing wishes, and will keep you in my thoughts.


----------



## SingingMom

branv said:


> I'm still in shock. It's benign. I spent 24 hrs thinking it was aggressively malignant due to a mixup (they sent me the original path report, not the updated path report from the more advanced lab). I literally started shaking all over when the doctor told me. I didn't even know good news could make you shake. I feel elated, a little silly for all the sleepless nights. I feel a little guilty for asking for help and advice others need more. I don't know why.  I know I don't really know you ladies, yet your experience and guidance was unbelievably helpful to me. Funny how that can be.  Angwill, I'm so very sorry you are going through another fight. And incredibly emotional that you had the kindness to respond to my questions when you had your own battle. I am sending you a million healing wishes, and will keep you in my thoughts.



So happy to hear your good news!!!!!

"SingingMom" ....Sent from my iPad using DISBoards


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## luvmarypoppins

branv - so happy for your good news

ang - how are the rads going? Sending you thought and prayers

singing mom - did you ever go swimming at the Swan/Dolphin in Jan? I am just wondering if we can go in a few weeks. I honestly cant stand the cold at all.  I saw someone post on the s/d thread that only one part of the pool was heated?

I had a bad cold,but all better now. At least it didnt get to the horrible hacking cough stage so that was good. 

Ds3 is going to orientation at his 2nd part time sub job on Monday. Ds1 says he is going for another interview after Thanksgiving. Only the 2nd one in 3 months, so we will see. Ds2 job is running out of funding. The joys of contracts and then other family stuff we are dealing with, sigh. dh and I def. need a vacation.

And on my list of things to do: flu shot, bone scan and mammo.


----------



## SingingMom

luvmarypoppins said:


> branv - so happy for your good news  ang - how are the rads going? Sending you thought and prayers  singing mom - did you ever go swimming at the Swan/Dolphin in Jan? I am just wondering if we can go in a few weeks. I honestly cant stand the cold at all.  I saw someone post on the s/d thread that only one part of the pool was heated?  I had a bad cold,but all better now. At least it didnt get to the horrible hacking cough stage so that was good.  Ds3 is going to orientation at his 2nd part time sub job on Monday. Ds1 says he is going for another interview after Thanksgiving. Only the 2nd one in 3 months, so we will see. Ds2 job is running out of funding. The joys of contracts and then other family stuff we are dealing with, sigh. dh and I def. need a vacation.  And on my list of things to do: flu shot, bone scan and mammo.



Two years ago in January I spent a lovely day poolside at the Dolphin with my Mai tai and book, while DH and dd went to Studios. It was heavenly and I went home with a tan.  A tan in January in NJ is quite an envious situation. Lol

Last year the weather was too chilly to swim.  I think DD & I ran down for an hour, but we were too cold.  One night on MK, she bought a quilt to wrap around her for the fireworks!  Yet, some days are in the 80's.  Really hard to pack & plan that time of year.  But, whatever, it's still warmer than January in NJ. Lol

"SingingMom" ....Sent from my iPad using DISBoards


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## angwill

branv said:


> I'm still in shock. It's benign. I spent 24 hrs thinking it was aggressively malignant due to a mixup (they sent me the original path report, not the updated path report from the more advanced lab). I literally started shaking all over when the doctor told me. I didn't even know good news could make you shake. I feel elated, a little silly for all the sleepless nights. I feel a little guilty for asking for help and advice others need more. I don't know why.
> 
> I know I don't really know you ladies, yet your experience and guidance was unbelievably helpful to me. Funny how that can be.
> 
> Angwill, I'm so very sorry you are going through another fight. And incredibly emotional that you had the kindness to respond to my questions when you had your own battle. I am sending you a million healing wishes, and will keep you in my thoughts.



Do not belittle your experience you had a cancer scare and are blessed it turned out for the best.  It is the waiting and loss of control that are the worst and you experienced that.  Glad you found us.  

Thank you for the kind words.  I will get through this it could have been a lot worse.  I was blessed with both my thyroid and the uterine cancer that I got them before they spread even if they were more aggressive than they first thought them to be.  

Stay strong.

LMP,  I am still healing and won't do radiation till most likely Christmas week.  I was supposed to seee the radiation specialist at last weeks 2 week post op but the doctor and her nurse dropped the ball and forgot to set it up.  

Angela


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## luvmarypoppins

Just want to say that I am thankful for all of you here. 

Have a blessed Thanksgiving everyone.


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## SingingMom

luvmarypoppins said:


> Just want to say that I am thankful for all of you here.  Have a blessed Thanksgiving everyone.



Happy Thanksgiving to you too!


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## luvmarypoppins

Well I am leaving on vacation tomm.

I called sat. to order my meds. When dh picked it up yest. they said they were out of synthroid and could only give me 2 pills, but promised dh it would be in by mon. Its here but now my ds are going out int the snow to get it for me. Gosh, what pharmacy runs out of synthroid?? First time ever for me in 5 years. 

Hopefully we will get there tomm. right now its snowing and they are predicting the huge noreaster will hit fiercely with high winds tomm morning and flooding, oh what fun. 

When we had the bad rain storm in the summer I read another poster who lives by my area and tried to get to the local airport  had her van flooded out on the way there, omg. 

Our flight leaves at 7:45 am, so hopefully we can make our way there.

Thinking f you all, especially you Ang. Hope you are healing before you get ready to fight! You are in my prayers.


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## angwill

LMP,  I missed your Thanksgiving message sorry.  I am thankful for you and everyone here as well and hope your holiday was a great one.  

Enjoy that vacation and relax.  

My Pharmacy/Walgreens runs out of meds all the time here.  Just yesterday they only had a 3 day supply of a 90 day script for my Cytomel.  They can't even get that script right in their computer system and half the time I explain what is needed when I drop it off and come back an hour or two later depending on how long they say it will take to find out it's filled wrong and then they want me to wait in line all over again.  No manager will tell them to fill it right now either and the home office could care less despite the fact that some of their mistakes could kill someone and the majority are made by one particular tech over and over.  I no longer blame my doctor or nurse for pharmacy mistakes.  I wish our Walmart pharmacy were better. lol  

Thank goodness we are having warmer than usual weather in the midwest so only rain for us right now but still a bit of snow left on the ground.  I hope the weather doesn't put a damper on your vacatoin or travel.  

Thanks for the good thoughts for me.  Oh I got my thyroid ultrasound done on the weekend and they found a swollen lymph node.  It has been there for months.  Waiting for my doctor to be in Wednesday for him to tell me what he suggests.  He only works on Sat and Wed now.  I just want answers and no more waiting.  Wishful thinking.  

Ang


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## luvmarypoppins

ang - (I am taking a packing break) When I had the swollen lymph node my doctor said he usually prescribes an antibiotic first. But mine was itching on my neck, but still I insisted he do a biopsy.

They did tell me if it was in a hard to get to place for surgery they could try alcohol ablation on it. Some people are rai resistant too, but that is a whole other thing. 

Just be sure to get lots of info from your dr. Sometimes they do nothing and just keep watching it.

I always ask my dr. way too many questions (that was the surgeon). I always drove him crazy, but I could care less since he almost killed me. He should humor me and he knew it. But he did answer everything.


----------



## SingingMom

LMP - hope you can fly out with no delays!  You deserve a vacation!  Enjoy my beautiful Swan/Dolphin! . We leave in a month - but at POFQ this time.  I'm sure it will be fine but I will miss the deluxe vibe and location. Not complaining though. Very thankful to have 10 days away from winter!! 

Check with your airlines before you leave to make sure you are still scheduled!  Have fun!


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## angwill

luvmarypoppins said:


> ang - (I am taking a packing break) When I had the swollen lymph node my doctor said he usually prescribes an antibiotic first. But mine was itching on my neck, but still I insisted he do a biopsy.
> 
> They did tell me if it was in a hard to get to place for surgery they could try alcohol ablation on it. Some people are rai resistant too, but that is a whole other thing.
> 
> Just be sure to get lots of info from your dr. Sometimes they do nothing and just keep watching it.
> 
> I always ask my dr. way too many questions (that was the surgeon). I always drove him crazy, but I could care less since he almost killed me. He should humor me and he knew it. But he did answer everything.



Thanks for taking a packing break to write.  How long was your lymph node swollen for?  I notice I get them under my pits and in different places on my neck.  This one has just been there for several months now. I don't think antibiotic is going to help since I am sure I got that in high doses during my radical hysterectomy a month ago and it's still there.  No itching for me. 

My doctor is a bit of an airhead and if asked a question he doesn't want to answer will go on a long explaination of something else. lol  I am pretty sure he is a wait and see kind of guy.  Right now I would rather wait till after all the radiation from they uterine cancer is over.  I have too much on my plate.


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## squeegee

I don't post much, but have been reading this thread for a long time. Now, I find myself with a need to vent. This will be a kinda long post. :/

I had/have papillary carcinoma with lymph node spread, and did the total thyroidectomy and partial neck dissection with RAI and WBS back in 2011. My then-endo said the *only* followup I needed was bloodwork. I trusted she knew what she was doing, though I had read that follow-up was usually more aggressive. 

Two years later, my primary caregiver there, a nurse practitioner I rather liked, left the practice, so I decided to find a different endo, closer to home, since I know I need to follow up on this pretty much forever. 

I am exceedingly impressed with my new doctor. I see HIM. In two years, I only ONCE saw the other endo - a 5 minute "visit" while I was talking with my NP. My new Dr., however, was not impressed with the follow up care I'd been receiving. He ordered bloodwork, and had an ultrasound done that instant. 

There are two suspicious lymph nodes in the left neck that he wants to biopsy next week. The left side is where all the tumor was, before. 

So, again I begin the waiting game. 

If the FNA comes back positive, there will be more surgery, more radiation, more missed work. 
Can't let on to my husband or parents just how frightened and frustrated I am, so I'm glad that this board exists. 

What are the odds that the FNA will come bak normal? Anyone know? 

Thanks.


----------



## angwill

squeegee said:


> I don't post much, but have been reading this thread for a long time. Now, I find myself with a need to vent. This will be a kinda long post. :/
> 
> I had/have papillary carcinoma with lymph node spread, and did the total thyroidectomy and partial neck dissection with RAI and WBS back in 2011. My then-endo said the *only* followup I needed was bloodwork. I trusted she knew what she was doing, though I had read that follow-up was usually more aggressive.
> 
> Two years later, my primary caregiver there, a nurse practitioner I rather liked, left the practice, so I decided to find a different endo, closer to home, since I know I need to follow up on this pretty much forever.
> 
> I am exceedingly impressed with my new doctor. I see HIM. In two years, I only ONCE saw the other endo - a 5 minute "visit" while I was talking with my NP. My new Dr., however, was not impressed with the follow up care I'd been receiving. He ordered bloodwork, and had an ultrasound done that instant.
> 
> There are two suspicious lymph nodes in the left neck that he wants to biopsy next week. The left side is where all the tumor was, before.
> 
> So, again I begin the waiting game.
> 
> If the FNA comes back positive, there will be more surgery, more radiation, more missed work.
> Can't let on to my husband or parents just how frightened and frustrated I am, so I'm glad that this board exists.
> 
> What are the odds that the FNA will come bak normal? Anyone know?
> 
> Thanks.



You should have had an ultrasound at 6 months and 1 year post thyroidectomy especially with mestastasis to the lymph nodes along with thyroid tumor marker and tsh t3 and t4 blood work.  I even had a WBS 6 months post and most doctors stopped doing that if ultrasound and bloodwork are good.  

I have a swollen lymph node but when I saw my doctor he wanted me to wait 3 months and do another ultrasoud to see if it goes down.  Remember Lymph nodes filter infection out of our blood so they do get swollen for other reasons than just cancer.  It is the waiting and wondering with no control that drives us crazy though so I feel you pain.  

If it makes you feel better you have company in the waiting game but I have to wait at 3 months for a node that has already been swollen for over 3 months and my doctor knows it.  I am also waiting for radiation to start for uterine cancer during Christmas that I am not looking forward to the side effects from but feel fortunate I don't need chemo. Not to mention ******l exams every 3 months and CT scans for 2 years and then I go to every 6 months.  Blech!!! 

You can do this just vent here and make sure you let us know what the results are.  You can do this and you most likely will have your answers before Christmas and let them be good so you can enjoy the holiday.


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## squeegee

angwill said:


> You should have had an ultrasound at 6 months and 1 year post thyroidectomy especially with mestastasis to the lymph nodes along with thyroid tumor marker and tsh t3 and t4 blood work.




They never did any followup ultrasounds or even simple physical exams/palpations. I feel like such a moron for not insisting or leaving sooner. I even work in the medical field, myself. I know to advocate for myself, but didn't. Lesson learned. Bloodwork always did come back great, though, no antibodies to get in the way. 




angwill said:


> I even had a WBS 6 months post and most doctors stopped doing that if ultrasound and bloodwork are good.



The new Dr has mentioned that he wants to do that, but we've got to get past this biopsy first. No point in doing a tracer scan if I have to go through another ablation. 




angwill said:


> It is the waiting and wondering with no control that drives us crazy though so I feel you pain.  If it makes you feel better you have company in the waiting game but I have to wait at 3 months for a node that has already been swollen for over 3 months and my doctor knows it.  I am also waiting for radiation to start for uterine cancer during Christmas that I am not looking forward to the side effects from but feel fortunate I don't need chemo. Not to mention ******l exams every 3 months and CT scans for 2 years and then I go to every 6 months.  Blech!!!  You can do this just vent here and make sure you let us know what the results are.  You can do this and you most likely will have your answers before Christmas and let them be good so you can enjoy the holiday.




The doctor wants to go straight to the biopsy given the previous lack of appropriate follow-up, not wait to see if they continue to grow. They're both over 1cm and had other features that were worrisome. 
I won't actually be able to do it next week, like he wanted, as they're booked until the first week of January, so I get to wait a little longer. I wish none of us had to go through any of the waiting - if only it were as simple as "cut it all out" and be done with it. 
Thanks for listening.


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## squeegee

And on a much shallower note, I'm angry that this might interfere with the disney trip I've been planning for the last four years. 
We're booked for next December, but if I end up missing tons of work for this, I won't have any vacation time left to take the trip. Grrrrrrr.


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## SingingMom

squeegee said:


> And on a much shallower note, I'm angry that this might interfere with the disney trip I've been planning for the last four years. We're booked for next December, but if I end up missing tons of work for this, I won't have any vacation time left to take the trip. Grrrrrrr.



Not shallow at all.  Very natural.

I hope you get good news and can continue with good care from your new endocrinologist.   I myself never had an ultrasound until I changed doctors after 18 years. I am cancer free 22 years, but I also had papillary with 7 lymph nodes involved .  

Prayers that you don't miss much work & you enjoy your trip.   And know we are here for any venting needed!


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## angwill

Is there a way for you to go to another hospital for the biopsy?  I know some doctors do the biopsy in their clinics but can also use their hospital.  They don't like us using other hospitals but if it gets you in faster then I would go where I could get in.  

My node is 9mm so 1mm under their worry zone.  My endo doesn't feel my neck either and it was my sleep doctor of all people that felt it enlarged in September and he told me not to worry till December when I had my follow up.  I am going to start insisting he does feel my neck from now on.  

I would be upset like you as well if you miss a trip because of your days off.  I haven't been to Disney since my thyroid cancer last year either so I understand the desire.  

May you get good results and enjoy that trip after all the worry.


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## squeegee

Thanks, y'all, for your replies. Will keep everyone posted.


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## squeegee

In one spot of good news: I talked to the boss and she said that, no matter how much time I may miss over this cancer thing, I can take time for disney - unpaid, but at least they'll let me take the time.


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## angwill

squeegee said:


> In one spot of good news: I talked to the boss and she said that, no matter how much time I may miss over this cancer thing, I can take time for disney - unpaid, but at least they'll let me take the time.



That is great that she is so understanding.  Hopefully your surgery will go as simple as mine.  I coud easily have gone back to work 2 days after as I had no side effects and my body healed very well.  The surgeon I had would have let me too. lol 

The week off for radiation was another story since you can't be near anyone and hypohell was hell too.  I hope you don't have to take too much time off.


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## Christine

http://www.washingtonpost.com/natio...e61ed0-6c05-11e4-a31c-77759fc1eacc_story.html

Thought you all might enjoy the article posted in the above link.  It was in yesterday's Washington Post Health section and told the story of a young medical student getting a thyroid cancer diagnosis.  I especially liked her discussion on how she handled it emotionally after being taught that it's the "best" cancer.


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## SingingMom

Christine said:


> http://www.washingtonpost.com/national/health-science/a-medical-student-develops-an-illness-she-has-been-studying/2014/12/12/05e61ed0-6c05-11e4-a31c-77759fc1eacc_story.html  Thought you all might enjoy the article posted in the above link.  It was in yesterday's Washington Post Health section and told the story of a young medical student getting a thyroid cancer diagnosis.  I especially liked her discussion on how she handled it emotionally after being taught that it's the "best" cancer.



Thanks for sharing the article!  22 years later, and I still cringed as I read about her going through the full body scan. I remember how scared and alone I felt, while my husband sat in the hallway, not permitted to stay with me.  There was a baby in the same scan room and that upset me too, wondering what was wrong with that little angel.  Of course, being on no thyroid meds didn't help!   Yes, it might be the " best " cancer, but it's still " cancer"!


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## luvmarypoppins

squeegee - sorry you are dealing with this again. I am sure you will be glad to get the fna over and then its just waiting for the results, that is down right nerve wracking. 
I am glad you like your new endo though. Its important that you both are on the same page and of course you have to be your own best advocate.

I used to live in Texas for 4 years. I miss it alot! We lived in the southwest dallas area.

Christine - thanks for sharing that article. I think there is one dr. who will have a lot more compassion for sure! Of course everyone here knows how I feel about the good cancer and what has happened to me.

Ang - thinking of you and my thoughts and prayers continue to be with you. 

Well dh and I survived the trip. It was not the greatest. The weather was 10 degrees lower than normal.

On the plane ride down a woman started screaming that he rhusband had a heart attack. The flight attendants were giving him oxygen. They never told us what was happening,but finally said we are continting to Orlando. The guy walked off the plane and sat in a wheelchair with the emts. 

I also got hit in the head with a snowball napkin from a wonderful dad at the next table. I actually thought his kid did it but I couldnt turn my neck and see because of the good cancer, lol, I was waiting for the kid to come and apologize. Dh saw the whole thing and said the dad did it and the kid ducked The dad came over to apologize and bought us our dinner. 

The food quality has gone down for sure. I am gong to do a dining report. Dh steak at the Yachtsman was terrible. So was his chicken at Hollywood Brown Derby.

Singing mom - we loved the renovated room at the Swan, except for the strange glass table.

I love Levar Burton! The MVMCP was ok. I also love listening to the Joyful gospel musical presentation at Epcot. Dh doesnt care for that music, but I do. The Osborne Lights ere great as usual and not crowded the night we went. We also had the front row for the frozen sing along because I sat in the wheelchair.

I still need to get the bone scan and mammo I know they are only looking for bone density but my scoliosis is getting really bad. I know my mom had the same problem, so I am thinking its hereditery. Lots of the bad genes in my family. 

Thinking of you all. Hope everyone is doing ok.

Have a blessed holiday season everyone.


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## angwill

Christine said:


> http://www.washingtonpost.com/natio...e61ed0-6c05-11e4-a31c-77759fc1eacc_story.html
> 
> Thought you all might enjoy the article posted in the above link.  It was in yesterday's Washington Post Health section and told the story of a young medical student getting a thyroid cancer diagnosis.  I especially liked her discussion on how she handled it emotionally after being taught that it's the "best" cancer.



That was an interesting article.  I can tell you though that not only thyroid cancer is minimalized by doctors so is cervical and uterine.  Same stigma of if you have to get one this is the one to have.  The ironic thing is I was told that with thyroid cancer and then after was told we need to tell you that yours was an aggressive variant comparable to breast cancer but don't worry it was contained and we got it out of there.  Don't worry, yeah right. lol


----------



## squeegee

luvmarypoppins said:


> squeegee - sorry you are dealing with this again. I am sure you will be glad to get the fna over and then its just waiting for the results, that is down right nerve wracking. I am glad you like your new endo though. Its important that you both are on the same page and of course you have to be your own best advocate.  I used to live in Texas for 4 years. I miss it alot! We lived in the southwest dallas area.



I've lived in Texas since I was about three or four years old, and don't remember anything else. I've been pretty much everywhere but the panhandle. I'll have to find an excuse to head up there for a visit someday, so I can say I've visited all the major "sections" of Texas. LOL.


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## luvmarypoppins

Just popping in to wish you all a blessed Christmas and  holiday season

Ang - sending your special thoughts and prayers

Christine - thought of you because 1. I want a kindle for christmas and of course no one would ever think to get me that and 2. I looked at my goodreads year in profile, I says I have read 60 books so far, granted some of those are childrens books that I win and donate to the ds old school. But my dh is going away the day after christmas so I am hitting the tbr pile for sure. I started a historic romance on the plane, but got sidetrack going when a guy had a supposed heart attack so I made a dent in it coming home. 

I might do a dining report, so I will tel you all when I post it for your reading enjoyment.

Singing mom - your trip is right around the corner! Enjoy every minute of it.

I need to get the bone scan and mammo so we will see when that can happen.

Thinking of you all. Check in when you can.


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## SingingMom

luvmarypoppins said:


> Just popping in to wish you all a blessed Christmas and  holiday season  Ang - sending your special thoughts and prayers  Christine - thought of you because 1. I want a kindle for christmas and of course no one would ever think to get me that and 2. I looked at my goodreads year in profile, I says I have read 60 books so far, granted some of those are childrens books that I win and donate to the ds old school. But my dh is going away the day after christmas so I am hitting the tbr pile for sure. I started a historic romance on the plane, but got sidetrack going when a guy had a supposed heart attack so I made a dent in it coming home.  I might do a dining report, so I will tel you all when I post it for your reading enjoyment.  Singing mom - your trip is right around the corner! Enjoy every minute of it.  I need to get the bone scan and mammo so we will see when that can happen.  Thinking of you all. Check in when you can.



Merry Christmas to you too!

I am playing and singing for our parish school's   "lessons & Carols" tomorrow, singing at Christmas Eve 4 pm mass, going out to dinner afterwards with our friends like we do every year - a gorgeous hotel with a conservatory filled with poinsettias and Victorian carolers and lobster buffet!  Christmas I host sit down dinner for 12 with my family. New Year's Eve I'll sing at mass again, then spend the evening at my sister's. Then 5 days later : DISNEY!   I will NEED the vacation!  Hope the weather cooperates!!


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## Christine

luvmarypoppins--you need to get that Kindle.  I can't believe, with as much as you read, that it has occurred to them!  It has really been a lifesaver for me as I've got that "old lady" vision now and I find that sitting with a "real" book, under lots of bright lights, with my reading glasses, is no longer pleasurable.

I like that the Kindle print is easy to see, is adjustable, and that I can take it anywhere with me.  Ever lugged around an 800 page Diana Gabaldon novel?  Not fun.

I hope everyone has an Merry Christmas and enjoys some downtime with your families.  I know that I am looking forward to just relaxing.  

I'm working tomorrow but then I don't go back until the 30th.


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## SingingMom

Christine said:


> luvmarypoppins--you need to get that Kindle.  I can't believe, with as much as you read, that it has occurred to them!  It has really been a lifesaver for me as I've got that "old lady" vision now and I find that sitting with a "real" book, under lots of bright lights, with my reading glasses, is no longer pleasurable.  I like that the Kindle print is easy to see, is adjustable, and that I can take it anywhere with me.  Ever lugged around an 800 page Diana Gabaldon novel?  Not fun.  I hope everyone has an Merry Christmas and enjoys some downtime with your families.  I know that I am looking forward to just relaxing.  I'm working tomorrow but then I don't go back until the 30th.



I just can't say yes to a Kindle yet. Lol.  I adore the feel & smell of a "real" book!


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## Christine

SingingMom said:


> I just can't say yes to a Kindle yet. Lol.  I adore the feel & smell of a "real" book!



I was the same way.  Very "diehard" about books.  It took about 3 months to be lured over to the dark side!


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## angwill

Merry Christmas everyone!!!!  

Singingmom,  I dare you to just try the Kindle.  I resisted for a long time and missed the smell of books for a very, very short period of time and then I was in love.   I now will only buy a book if it is cheaper than the cost for the kindle version.  

Ang


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## SingingMom

angwill said:


> Merry Christmas everyone!!!!  Singingmom,  I dare you to just try the Kindle.  I resisted for a long time and missed the smell of books for a very, very short period of time and then I was in love.   I now will only buy a book if it is cheaper than the cost for the kindle version.  Ang



But how long does a charge last?  I'm so frustrated when my iPad or iPhone need  recharging. I don't necessarily read next to an outlet. ;-). 
And I am a BIG reader poolside or on the beach. I always worry about sun, water, and sand damage.  I think a paperback is still my best bet!  Lol


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## angwill

The charge lasts weeks as long as you turn off the internet connection.  I put mine in plane mode.  I bring mine to the pool and my only fear is theft so I do tend to bring a paperback for those situations if they are public like at Disney.  At POFQ I put it under a towel and believe it or not I had an elderly lady try to steal it and ended up having to get out of the pool and chase her away from my chair and she dropped it.  That is when I started bringing a regular book for by the pool.  All you really have to do is put it in a plastic baggie if you might get it wet.  They sell things that cover them too.


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## Christine

My charge lasts about 2 weeks when I'm in Wi-Fi mode and a LONG time when I'm not.  

If I'm worried I'm getting down to the end, I just randomnly plug it in when I am not reading.


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## luvmarypoppins

Just popping in to say Happy New Year everyone.

Singing Mom - have a great time on your trip. Can't wait to hear about it

I did a dining report if anyone is interested in reading it.

Ang - how are you feeling? Thoughts and prayers for you.

Christine - I smiled when I read your post about your sons jacket. I got ds3 some scrubs and he doesnt like them. I said next time, just money and pick them out yourself. I ordered them online and paid like $14 bucks for shipping and now to return them I have to pay another $8, sigh. 

Hope everyone had a good Christmas. Ours was terrible. Dh had to leave at noon because he calculated his ff miles wrong as work used a free ticket for him his last trip to Calif. , so he flew from ny to sf, back to ny, then to la, sydney, auckland, back to sydney, dallas and then ny. He is now the happy owner of 100k miles and elite status for the next year. My ds were none too happy either. Only good thing is the points for the free hotel. I looked for the spring and the only good deal was the Swan again. If Disney is reducing their deluxe rooms for 30% off, I dont know why the airline is not reducing the miles needed. They use expedia to get the rooms I think. You have to go through the airline site and not expedia yourself etc. 

Yes I would love a kindle. Dh bought himself a new iphone 6, so I need to get out of the dark ages too. He gave me his old phone which is something I need to learn how to use, its not even an i phone. 

I just won another 3 books this week. I am going to share them with people at church when i am done. 

Thinking of you all check in when you can.


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## angwill

luvmarypoppins said:


> Just popping in to say Happy New Year everyone.
> 
> Singing Mom - have a great time on your trip. Can't wait to hear about it
> 
> I did a dining report if anyone is interested in reading it.
> 
> Ang - how are you feeling? Thoughts and prayers for you.
> 
> Christine - I smiled when I read your post about your sons jacket. I got ds3 some scrubs and he doesnt like them. I said next time, just money and pick them out yourself. I ordered them online and paid like $14 bucks for shipping and now to return them I have to pay another $8, sigh.
> 
> Hope everyone had a good Christmas. Ours was terrible. Dh had to leave at noon because he calculated his ff miles wrong as work used a free ticket for him his last trip to Calif. , so he flew from ny to sf, back to ny, then to la, sydney, auckland, back to sydney, dallas and then ny. He is now the happy owner of 100k miles and elite status for the next year. My ds were none too happy either. Only good thing is the points for the free hotel. I looked for the spring and the only good deal was the Swan again. If Disney is reducing their deluxe rooms for 30% off, I dont know why the airline is not reducing the miles needed. They use expedia to get the rooms I think. You have to go through the airline site and not expedia yourself etc.
> 
> Yes I would love a kindle. Dh bought himself a new iphone 6, so I need to get out of the dark ages too. He gave me his old phone which is something I need to learn how to use, its not even an i phone.
> 
> I just won another 3 books this week. I am going to share them with people at church when i am done.
> 
> Thinking of you all check in when you can.



Happy New Year everyone.  May 2015 be filled with good health and happenings for everyone.  

LMP,
I am starting my radiation tomorrow on my pelivis.  Kind of nervous despite knowing exactly what to expect.  I just hate the lack of modesty and dignity in this cancer.  I hate knowing everyday I have to lay on a table with my bottom half naked.  But anyway it will be over in 6 weeks.  I will not miss the drive either. lol  

Sorry to hear you husband was not able to be home all day on Christmas.  Last year my husband worked both eve and day but at the last minute this year a guy offered to trade him his weekend day for Christmas since he didn't have plans so that was so nice.  

So you didn't get that Kindle, bummer.  The paperwhite with advertisment is not expensive at all right now so it might be worth it to try it out.

I have no clue how miles work but it sounds nice to be able to use them for free rooms and air fare.  

Take care. Ang


----------



## macraven

angwill, will have you in my thoughts!
hope the next 6 weeks and the treatment will be bearable for you.
my brother just finished up a long round of radiation.
i hope it doesn't wear you out.

lmp, that is tough your christmas turned out the way it did.
start giving out checks to the sons instead of surprising them with gifts.
that is what i have started doing.
i hate shopping then having to do returns too.
money is never returned to me when i give it at christmas to my sons.

hope you get a kindle real soon.
maybe for valentines day?

christine, i'm still in the dark, i love books.
don't know if i could change over to the modern way now and go with the kindles.

singing mom, how was your vacation?
hope it went grand.

i don't know a lot of the posters on this thread but i do wish all that read here, the best 2015 has to bring!


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## SingingMom

Happy New Year All!

Christmas time was hectic but nice. Only problem was tree fell down two days after Christmas!  Looks like the trunk got waterlogged and tipped over, bending the screw in the stand!  Only three ornaments broke, and thankfully not the ones from our Adventures by Disney trips to London & Germany!!!   It was sac seeing the tree on the curb so early, since we leave ours up at least until Epiphany !  Lol


We are all packed & ready to go first thing Tuesday morning!  Hopefully the weather will cooperate - calling for snow showers. We have plans to meet up with some of our CM friends - so excited to spend some time with them!  DH needs a vacation. Been very busy at work. Looking forward to the three of us having some Disney fun.  Last winter break of college for DD.  One more semester before graduation!


Ang - prayers for your treatments to go quickly and worry free. My friend found a nightly soak in the tub really helped during her radiation series for uterine cancer. She's healthy & doing great three years later.


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## squeegee

Had my lymph node FNA today. 

The procedure went well , but I'm terrified that he didn't get the right node. 

I do ultrasound myself (though not thyroid/lymph node), and had been obsessively scanning the nodes that the tech pointed out to me. The largest, most suspicious one was lateral to my jugular, about the middle of my neck. The punctures from this FNA are way further down, above my collar bone. 

I tried showing him the node with the ultrasound, and he said that it was the one he got. I didn't press on to ask why the punctures are so far away. Am frustrated out of my mind. 

Keep your fingers crossed for me.


----------



## luvmarypoppins

squeegee - I am glad to hear that your fna is done. I would be a little concerned. I dont know how they categorize everything but I know the lymph node levels are 1 to 4? 

Maybe you can just call the office tomm. Is there a nurse or np etc. to talk to. Wondering if the node was at say Level 2, then why does it appear the biopsy was done on the node at level 4? etc.

My biopsies seemed to be all where the nodes were. One node was popping out so that was a no brainer one and I had to have a core biopsy of the thyroid tumor itself, can you say caulk gun going into your neck sideways? lol.

I lost my jugular vein due to the surgeons mistake and bleeding out and almost dying. So if I need another fna on that side I know it will only be high up near the ear area or very low down too by the collarbone. I dont think I have much left over there anyway. I had over 40 lymph nodes taken out there. 

Wishing you the best and I hope you get the fna results back much faster than last time. Have your thyroid blood tests been within all the normal limits. My onc. and endo said they are more concerned with the blood tests because any deviation from 0 (has to be less than 1)  makes them look for things etc. 

Ang -  This is for you. I know you can do this. 2 down already!! I am sure it is not easy with all you have to go through.  Thinking of you and sending you my thoughts and prayers.


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## squeegee

luvmarypoppins said:


> squeegee - I am glad to hear that your fna is done. I would be a little concerned. I dont know how they categorize everything but I know the lymph node levels are 1 to 4?  Maybe you can just call the office tomm. Is there a nurse or np etc. to talk to. Wondering if the node was at say Level 2, then why does it appear the biopsy was done on the node at level 4? etc.  My biopsies seemed to be all where the nodes were. One node was popping out so that was a no brainer one and I had to have a core biopsy of the thyroid tumor itself, can you say caulk gun going into your neck sideways? lol.  I lost my jugular vein due to the surgeons mistake and bleeding out and almost dying. So if I need another fna on that side I know it will only be high up near the ear area or very low down too by the collarbone. I dont think I have much left over there anyway. I had over 40 lymph nodes taken out there.  Wishing you the best and I hope you get the fna results back much faster than last time. Have your thyroid blood tests been within all the normal limits. My onc. and endo said they are more concerned with the blood tests because any deviation from 0 (has to be less than 1)  makes them look for things etc.



Bloodwork has always been at goal, there was never any suspicion there, so that's good. I was very surprised to find that there were any suspicious nodes at all, since the bloodwork had been good. 

I'm going to go to work and take a look with my own machine today, see if maybe I can make things line up better. I'm going to see what the pathology says when he comes back, and might request a do-over if this one comes as benign, this time with his tech in the room to assist, instead of his MA. 

The node I'm worried about just looks so ugly - over 2cm, microcalcifications, peripheral vascularity, cystic areas - most of the classic ultrasound characteristics of malignancy (though I know one can't diagnose by us).  It looks so much like my original tumor. *sigh*

On with the waiting game.


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## squeegee

Got the results back - much quicker than I expected- but unfortunately positive for metastatic papillary thyroid cancer. 

So, *ding, ding* round two!

At least we're past all of the major holidays this time. *sigh*

Keep your fingers crossed for me. Will post here off n on as I go.


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## SingingMom

squeegee said:


> Got the results back - much quicker than I expected- but unfortunately positive for metastatic papillary thyroid cancer.  So, *ding, ding* round two!  At least we're past all of the major holidays this time. *sigh*  Keep your fingers crossed for me. Will post here off n on as I go.



So sorry for your results. Prayers that everything goes smoothly. Keep positive!  ((Hugs))


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## mommasita

HI everyone... 

It took me a while to post this, because I am honestly just so confused, and lack a lot of courage..I also tend to ramble.. Apology in advance 

I quit smoking May 31, and promptly starting gaining weight, so I honestly just attributed it to that. .THen I noticed  my hair .. This took a while to notice the loss, as I have enough for ten people. I had to start washing it in kitchen sink and take pictures with my cell phone for the Dr to say that ISN"T normal.. So my dr took a full bloodwork ,and all was ok.. I thought I was crazy, my hair loss was worse.. I am just exhausted.. By now I have gained 50 pounds. I am so short and small, this can't be ok.. I am eating more, but this can't all be the quitting smoking.. I don't gain like this, and I feel terrible, depressed,  I cry ALL the time. I don't want to see a soul.

So before Xmas I do it again.. Now the call came by T4 and TSH was off by a  lot.. He wanted me to wait 3 weeks and redo in case.. I did it , and he called today and said it was worse.. IN the meantime, I picked up a copy of the first report.. the range for tsh is 0.27-4.20. MINE is 6.26.. the t4 is 12-22 .. MINE is 12.. Also my Cholesterol  is high, so naturally I google (shouldn't) and see Hashimoto's.. I see my Rhemy next week anyway, and just am being extra worried.. Should I be?   

My GP is supposed to call me back tomorrow, and then I guess I will be asked to go in.. is my range bad?  My MOther had Hashimoto's, then THyroid cancer.. RIght now I am dealing with a possible hysterectomy and other issues, so this kind of came at me out of nowhere.. I shouldn't say that, because I was shocked when my initial bloods came back ok, as I had signs of a lot with the hair and weight gain..

Thanks everyone..  I have experience in a ton of medical, I was young when my mother went though it, so quite honestly I can't remember it..


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## macraven

momma, don't worry, it will work out.
i have hasimoto also for the past 28 years.
it's a very common condition with the thyroid disease.
my numbers go up and down frequently.

once you are started on the correct meds, you will be on the right track for feeling better.
it won't be automatic but will over the first 2 months you are on meds for the condition.

if you have two testings within a 2 month period, and shows the same, your doc will probably start you on meds soon.

i switched from an interist to a endo doc due to my levels going all over the place.

you'll find others here that will be able to give you more info and can share their thoughts with you.

congrats on the quitting smoking.
that's a tought thing to go through.
did it myself 4 years back.


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## Christine

mommasita,

Your numbers are definitely indicative of hypothroidism; however, they numbers aren't "bad."  Your TSH definitely shows it but it is a mild case.  Your T4 is still in range, but at the low end of normal.  The better test is the Free T4 versus the regular T4. 

For Hashimoto's, you will need antibody tests done.  It really won't matter, though, if you have it as it doesn't change the treatment or put you at any higher risk for things.

Your TSH is elevated, although not sure it's elevated enough to be the sole cause for the significant weight gain and hair loss.  But everyone is different.  I have had TSH levels MUCH higher than that and did not lose hair.

Do not underestimate the bodily effects of quitting smoking.  It is a proven fact that one *benefit* of smoking is an increased metabolism.  By stopping, you are slowing that down and many people do demonstrate a marginal increase in caloric uptake because they aren't smoking, but snacking.   Couple that with your age, and you've got the perfect storm.

I urge you to work with an endocrinologist on your thyroid issues (of which you do have).  MDs and other doctors just try to slap a band-aid on it and it can actually be kind of difficult getting you to a level where you feel great.

Please don't let the thyroid stuff scare you--it really will be okay.


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## luvmarypoppins

squeegee - so sorry about your results.  I'm sure you and your care team will get a good treatment plan in place. My thoughts and prayers are with you. 

mommasita - sorry you are having to deal with another health issue. I am sure its getting overwhelming at times. But hang in there and its good you are seeing a specialist. 

singing mom - Are you still on our trip??

macraven - how wonderful that you gave up smoking!! 

Its just so cold here that I dont want to make the appts. My bones really dont like the cold. They get all stiff and getting in and out of the car and walking is not fun.


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## SingingMom

luvmarypoppins said:


> squeegee - so sorry about your results.  I'm sure you and your care team will get a good treatment plan in place. My thoughts and prayers are with you.  mommasita - sorry you are having to deal with another health issue. I am sure its getting overwhelming at times. But hang in there and its good you are seeing a specialist.  singing mom - Are you still on our trip??  macraven - how wonderful that you gave up smoking!!  Its just so cold here that I dont want to make the appts. My bones really dont like the cold. They get all stiff and getting in and out of the car and walking is not fun.


  Yes!  In the middle of our trip.  Weather has been terribly cold. I'm not complaining in the fact that it is BITTER cold back home, but I really wish I had packed a warner sweatshirt. We are layering, but I had a bad chill today due to the sun not being out like yesterday. Hoping that tomorrow starts the warm swing!  We had a great time today visiting with our ABD guide from Germany!  We were super lucky that her trip overlapped with ours. So wonderful to spend time with her & her friend today.  Tomorrow my friend who lives here is picking us up to go to mass at the basilica, then we'll go to dinner. Dd & DH are going back to AK tomorrow, but I might stay at the resort to relax & soak in the hot tub if the weather cooperates!  Lol. We have lots more planned for the next six days!


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## mommasita

Thank you ladies 

My Doctor actually wasn't in today... We have had some horrendous weather.. Ice storm this week, snowwwwwwwwwww and some extreme cold, even for us...

I think the worst (aside from the weight, as I expected some, not 50) things are the hair loss and the mood swings.. I always was very evenly tempered, and it is almost like I have this PMS out of nowhere all the time. I hate it, I hate myself, and I have no control.... I apologize to my husband and kids, but It really isn't who I am, and I don't like myself, if that makes sense.

My husband decided to take it upon himself to book a holiday.. He says that we need a break.. This is our 20th year of marriage, and we are leaving next Sunday  on a cruise... I have a week to get things prepared, and it is for 12 days..  I have never left both kids.. THey are nearly 16 and 19, so they will be ok.. It is more the grocery purchasing and so on.. I think the break will honestly do so much good, he is right..  This week I have an internal ultrasound (the real  word will get blocked) and my Rheumy appt, and then he says I can take the 12 days off, and see the ENdo when I get back... With the -35 temps, I can't say I mind..

I will speak to my Doctor Monday and get in to see him before my Rheumy to get the copy of the second set of bloods for the comparison...

I thank you again.. It is deeply appreciated..


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## macraven

_momma, sometimes a wonderful trip like Mr Momma plans for you will make a world of difference.

you'll be relax and just enjoy the sites and be together.


make your trip be as free as a bird.


deal with what could happen after you return from this lovely special get away together._


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## squeegee

Met my surgeon today, and got the results of the CT. 

Good news is that there were no surprises on the CT. The only real findings there were the expected nodes in my neck, in the left. There was an incidental finding of some mild degenerative changes in my spine, but am not worried there. 

Surgery, a modified radical left neck dissection, is scheduled for Monday the 26th. He expects 1-2 days in the hospital, and didn't specify how much time off work - that's something I forgot to ask about. I figure 2-3 weeks, but I see my endo to begin radiation on March 6th, so asked if I can just have the FMLA paperwork keep me "off" until then. Will see. 

As for the radiation, the surgeon said there was some test they'll run on the removed tissue to see if it's iodine-avid. He gave me the name, but I can't remember it. Anyone heard of it?

If it's iodine-avid, I'll just go through the regular I131, but if it's not, that opens a whole 'bother can of worms. Will cross that bridge when I get to it, I suppose. 

Spent most of the day getting the pre-op bloodwork, chest X-ray, and EKG out of the way. Am lucky to be based in a hospital for my work, so was able to get most of it done there this afternoon. 

And now, all that's left is to wait for Monday the 26th.


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## luvmarypoppins

squeegee - glad you are getting the show on the road so to speak but so sorry you have to go through all of this again.

One of our posters had to get the rai twice I think because her one scan was not clean. She hasnt posted lately, but I am sure she will have some good advice. I do remember the second time she did thyrogen versus withdrawl and of course the lid first.

I dont know about that test but I am glad they have it. It will answer alot of questions for you. 

Just curious what your rai dose was first time. Mine was 200 , the max. But mine already spread to 2 tumors and lymph nodes. Also did you do the lid and withdrawl or thyrogen. I always ask everyone who posts for my own little unscientific study.

My onc. and surgeon told me that sometimes they use alcohol ablation on non avid and they save external beam in their arsenal for later too. 

You are a fighter and you can do this!! Prayers for you


----------



## squeegee

luvmarypoppins said:


> squeegee - glad you are getting the show on the road so to speak but so sorry you have to go through all of this again.  One of our posters had to get the rai twice I think because her one scan was not clean. She hasnt posted lately, but I am sure she will have some good advice. I do remember the second time she did thyrogen versus withdrawl and of course the lid first.  I dont know about that test but I am glad they have it. It will answer alot of questions for you.  Just curious what your rai dose was first time. Mine was 200 , the max. But mine already spread to 2 tumors and lymph nodes. Also did you do the lid and withdrawl or thyrogen. I always ask everyone who posts for my own little unscientific study.  My onc. and surgeon told me that sometimes they use alcohol ablation on non avid and they save external beam in their arsenal for later too.  You are a fighter and you can do this!! Prayers for you



I had 150 of the rai last time, after withdrawal and lid. The original tumor was only in the left lobe and 4/5 lymph nodes. 

I've heard if the alcohol ablation thing, but if surgery gets all the nodes physically out, am not sure what they'd inject?

Thank you for the encouragement and well-wishes. Will do my best to keep everyone updated as things go on.


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## mrsklamc

Hi!!! I'm still alive! My little guy is almost a year old and leaves almost no time for the DIS!

 I haven't caught up with reading everything, but with my radical neck dissection I had a 23.5 hour hospital stay (insurance thing, less than a day) and was off work for a month. I could have worked sooner, but I couldn't drive myself there because I couldn't turn my head/didn't have full range of motion.


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## squeegee

mrsklamc said:


> Hi!!! I'm still alive! My little guy is almost a year old and leaves almost no time for the DIS!  I haven't caught up with reading everything, but with my radical neck dissection I had a 23.5 hour hospital stay (insurance thing, less than a day) and was off work for a month. I could have worked sooner, but I couldn't drive myself there because I couldn't turn my head/didn't have full range of motion.



My little girl is almost four now and still doesn't leave me much time for posting. LOL.  

With my little girl at home, I've requested a longer stay inpatient. She has been a "high needs" child from day 1, and I don't fancy the idea of going home with a drain in my neck - an "accident" while she's glommed onto me is almost guaranteed. Have already been trying to prepare her for the fact that she won't be able to climb all over me and hug for a little bit, that I won't be able to pick her up. She's going to have to be gentle with mommy, and sometimes sit next to me instead of on me. LOL. 

I figure a month or so for the surgery recovery sounds about right, especially with regards to driving. I remember turning my neck with the TT was bad enough.


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## luvmarypoppins

squeegee - wishing you all the best on Mon. Sending you my prayers and good thoughts.  Hoping everything goes smoothly and hopefully not too much pain. 

Angie - thinking of you too and hope your rads are going as good as can be. You can do this! You have so much strength and courage. Hang in there!

Micayla - I am glad you stopped in. Come by more if you can, but with your little guy I am sure he is your top priority and keeping the mommy you very busy!

singing mom - we need a trip update

macraven - would love to hear about your trip too

Christine - saw yur comments on the guinea pig thread! We used to have a long haired litte  guy. It was a chore to get my kids to clean the cage. But he loved talking to me and of course I always gave him lots of treats. As soon as we opened the refrig. door he would go crazy! Are you reading anything good? I am actually reading two books right now but I dont know if I will do that again. I want to keep them straight. One is an amish fiction christmas story and the other I won from goodreads - an arc of a historical fiction. Its good so far. 

Next month I have my endo visit, so blood test in a few weeks not to mention the procrastinating bone scan I need to schedule. 

And in other news, I am going to give this one a  because ds3 got the nursing job he applied for. Its in the worst hospital around here, but he is still thrilled. He is going to be on  med/surg telemetry unit. He is doing full time days 3 days a week 7am to 7pm. So he is happy with that. His one friend from nursing school might be on the same unit or at least the same floor so he is double happy. He said she is engaged and a nice girl. Hope they can work as a good team together. 

Check in when you all can. Thinking of you all.


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## Christine

luvmarypoppins said:


> squeegee - wishing you all the best on Mon. Sending you my prayers and good thoughts.  Hoping everything goes smoothly and hopefully not too much pain.
> 
> Angie - thinking of you too and hope your rads are going as good as can be. You can do this! You have so much strength and courage. Hang in there!
> 
> Micayla - I am glad you stopped in. Come by more if you can, but with your little guy I am sure he is your top priority and keeping the mommy you very busy!
> 
> singing mom - we need a trip update
> 
> macraven - would love to hear about your trip too
> 
> Christine - saw yur comments on the guinea pig thread! We used to have a long haired litte  guy. It was a chore to get my kids to clean the cage. But he loved talking to me and of course I always gave him lots of treats. As soon as we opened the refrig. door he would go crazy! Are you reading anything good? I am actually reading two books right now but I dont know if I will do that again. I want to keep them straight. One is an amish fiction christmas story and the other I won from goodreads - an arc of a historical fiction. Its good so far.
> 
> Next month I have my endo visit, so blood test in a few weeks not to mention the procrastinating bone scan I need to schedule.
> 
> And in other news, I am going to give this one a  because ds3 got the nursing job he applied for. Its in the worst hospital around here, but he is still thrilled. He is going to be on  med/surg telemetry unit. He is doing full time days 3 days a week 7am to 7pm. So he is happy with that. His one friend from nursing school might be on the same unit or at least the same floor so he is double happy. He said she is engaged and a nice girl. Hope they can work as a good team together.
> 
> Check in when you all can. Thinking of you all.




luvmarypoppins:  congrats to your son.  I know you are all thrilled about this.  He will get some good experience and then, I'm sure, future jobs will come easier.

I just finished reading a Stephen King book (Revival) that a friend had so it was a "freebie" for me.  It was okay.  Starting another one that I just got from the library that is more of a crime/thriller thing, but it gets good reviews.

My endo appointment is on February 2, so I've got my usual labs.  Not sure if it's time for a neck ultrasound or not.  I am very interested to see how my labs are.  I've had a ridiculously hard time losing weight over the last 6 months and I *have* lowered my thyroid meds but my TSH is still pretty low even with that so it's probably more of an "old lady" thing.  I am 51 now and my hormones are in a definite shift and I think I'm speeding into menopause but not there yet, so that is probably what it is.

In three week we move back into our building at the Navy Yard so that's going to be a big deal for many of us.  So many people have some form of PTSD after what happened that I'm not sure all will be able to go back.


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## squeegee

Surgery yesterday went fine, though it ran a bit late - was supposed to start at 9:30, didn't until about 1:00. 

Had some major chest pain last night, they ruled out a heart attack, and assume it must be gas. LOL. Still some pain this morning, but not unbearable. 

Am likely to be sent home by tomorrow, which seems way too soon to me, but I think I'll manage. 

Now to wait another week for final pathology.


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## luvmarypoppins

squeegee - so glad to hear you are recovering from your surgery I am sure that chest pain was really scary.

I hope they are keeping a good eye on you for sure. 

Coming home tomm. does seem soon but I know I have fought not to come home from one of my surgeries but my pain was not being controlled well but it was after the thyroid stuff when I had stomach surgery post rad several months later. I did get to stay an extra day or they do as Micayla says have the things with ins. companys that are 23 hours because it has to be less than 24 etc.

Are you having a drain? I bet your really have to watch your little girl around your neck etc. 

And here is my little snow update - 18 inches so far at least with more snow today and on friday and monday, oh lucky us. Ds1 couldnt get home and is staying at a friends closer to the next county. At least he made it that far from Massachusetts. Dh got his flight cancelled and now changed. All flights sold out on Thurs. so he is coming in late Wed. night so far around midnight and of course we have the milk and bread!!

Thinking of you all. Check in when you can.


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## SingingMom

Squeegee- I had terrible gas pains also after my surgery. That was the extent of my pain.  They had to give me Rx for it.  I hope you get one more night n the hospital for some rest. No mom gets rest when they return home !  Feel better.  Praying for good path along reports!

Marypoppins - you got our snow!  We ended up with only a few inches, when two feet were forecasted!  
Happy to hear about your son's job. Good luck to him!

We had a great WDW trip.  10 days is still too short to be in Florida!  Lol. Weather wasn't great, but a few days were lovely. We did everything we wanted, and had the best time visiting with a number of our cast member friends for dinners.   Tried two new places for us - took our dear friends to California Grill. Delicious chicken, beautiful views added to the wonderful company. We again closed the restaurant, as we always do when with these friends!  We took another good friend to Fulton Crab House. We liked it - atmosphere very nice but messy crab legs. Lol.   

DH and I need to take a trip to tour some communities in the area. We think we will eventually move there and want to see if we want to be near the ocean (my ultimate dream) or if a pretty town like Celebration might be more suitable. Tampa is also a possibility.  Guess we'll have to figure this out!


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## squeegee

luvmarypoppins said:


> squeegee - so glad to hear you are recovering from your surgery I am sure that chest pain was really scary.  I hope they are keeping a good eye on you for sure.  Coming home tomm. does seem soon but I know I have fought not to come home from one of my surgeries but my pain was not being controlled well but it was after the thyroid stuff when I had stomach surgery post rad several months later. I did get to stay an extra day or they do as Micayla says have the things with ins. companys that are 23 hours because it has to be less than 24 etc.  Are you having a drain? I bet your really have to watch your little girl around your neck etc.



They originally wanted to send me home at the 23 hour mark, but I refused. Aside from feeling completely unsafe with that, I have a second insurance plan that reimburses a big chunk of my deductible  when I'm in the hospital for 24 hours. I've paid for that plan, I'm gonna use it, LOL.  

Unfortunately, I will be going home with my drain in. Yuck. I am more disturbed by the drain than by the Frankenstein-esque scar down the side of my neck. I can't logically explain how much I hate the drain. Maybe I should name it, so I can properly spew expletives at it. 

And yes, I'm going to have to make it very clear to Rosie that mommie's neck is off-limits. Luckily (?) the dog had a cancerous tumor removed from her chest last month, so we've been using that as a teaching tool for what's going on with mommy - and Rosie did remarkably well with the dog. Maybe I haven't created a total psychopath. 

Thank you all for the well-wishes.


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## squeegee

Well, plans changed slightly, as they tend to do, and I just came home from the hospital today. They did a CT to rule out pulmonary emboli, and the results took till this morning. The chest pain is greatly improved, and they gave me indomethacin for it, which helps a lot, but they never did figure out the cause. 

Am experiencing a LOT of stiffness in my neck, and odd "congestion" in my ears, and can't find a comfortable way to lie down, with 20 pillows, no pillows, and any number between. I miss that adjustable hospital bed. Otherwise, am doing alright. 

Good news is they went ahead and took the drain out before I came home. Drain removal was a bit more painful than I recalled, but it was quick, and am glad it's over with. 

I think I've brought home enough painkillers to stock a pharmacy, though. I am well-prepared to coast through the next few weeks in a haze, if I want to. I am already weaning myself off the norco, though. Was taking 2 every 4 hours in the hospital, am down to 1 every 5-6 hours now. 

Anyone got any useful tips for the post-op stiffness/tightness? 

Thanks!


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## luvmarypoppins

squeegee - Glad you are home. You certainly went through a lot! So glad your drain is out too. I dont have any tips. Just remember you had major surgery so comfort is a relative word for sure. 

I didnt like laying down in bed either. i tried to sleep as much as i could in the recliner. I only went to bed because I wanted to make sure my dh was by me in case I needed something and the bathroom was closer there too. 

Can I ask if they only took out the lymph nodes that were questionable or did they take out more. My surgeon took out mostly everything when he went in. Like 40 lymph nodes. I dont think he was actually planning that but he told dh when he went in it was alot worse than he thought etc. 

Just take it one day at a time. I had the congestion feeling in the ear too. it took a while to go away on ts own. I really cant feel the bottom of my ear  because he had to cut the accessory nerve because the 2nd tumor was growing through it I think he said. 

Angie - thinking of you too and I am sure things are not easy for you. But I so admire your strength. I hope the rads are not too hard on you. I am sure its tiring with the treatment and the travel. Prayers for you.


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## squeegee

luvmarypoppins said:


> squeegee - Glad you are home. You certainly went through a lot! So glad your drain is out too. I dont have any tips. Just remember you had major surgery so comfort is a relative word for sure.  I didnt like laying down in bed either. i tried to sleep as much as i could in the recliner. I only went to bed because I wanted to make sure my dh was by me in case I needed something and the bathroom was closer there too.  Can I ask if they only took out the lymph nodes that were questionable or did they take out more. My surgeon took out mostly everything when he went in. Like 40 lymph nodes. I dont think he was actually planning that but he told dh when he went in it was alot worse than he thought etc.  Just take it one day at a time. I had the congestion feeling in the ear too. it took a while to go away on ts own. I really cant feel the bottom of my ear  because he had to cut the accessory nerve because the 2nd tumor was growing through it I think he said.



They cleared out levels 2, 3, & 4, and half of level 5 - we knew going in that he was doing to do the majority - only level 5 was a surprise, and they took out about half of it. The surgeon did mention that there were a lot more visible suspicious nodes than the scans had indicated, but he believes he got them all. Now we're just awaiting final pathology. I see him in about two weeks. 

Ended up waking In the middle of the night and needing a pain pill, but otherwise had a pretty good night. My three year-old sleeps with me and my husband sleeps in the guest room (snoring). I carefully explained to Rosie that she needed to be very gentle, and not her usual thrash-metal sleeper self. She did fine, so I slept okay, propped up on four pillows. 

I hope everyone else here is doing well. Thanks for listening!


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## Christine

So is everyone enjoying the new boards?

Took me a little bit of time yesterday to find my way around.

Had my endo appointment yesterday with the usual bloodwork to follow so we shall see how that goes.  I did tell him that I've had some stubborn weight and that I also tried to up my dose a bit (back to what it was last year) but had 6 weeks of straight hot flashes that lasted about 4 hours a night.

He did confirm that at menopause you do need a lower dose of thyroid hormone so I am interested to see what my labs are.


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## luvmarypoppins

Christine - interesting about the lower dose as my endo upped mine but she said maybe because of malabsorption  and age etc? Just wondering, you go to  the endo and then get the bloodwork? My endo insists I have all the tests done and then see her etc. so on that note...

What a day! I realized my endo visit is next week, so I had to call and make a blood test appt. make the bone scan appt. and I might as well forget the ultrasound but we shall see about that one. It will probably take 2 weeks just to get in. Well then I see I cant find y paperwork, sigh, sigh. Calling and thank heavens ds can pick up some new scripts on his way to the univ. library. Dh is not happy as the endo visit is during his meeting. He said this was ok 6 months ago. I also have a meeting then at 3, so I told him just drop me off early etc.

I am still thinking like squeegee when the blood work can be ok but the ultrasound is not good so that is why I told her I want it all still done at 6 months, she said blood for 6 months and ultrasound for 1 year, um no because mine is the aggressive variant.

Also based on the bone scan results she is going to have to come up with a new med if its not good.

And in other news. Ds 1 had a phone interview today, well they lady called and postponed it to tomm. sigh on that one and then ds2 sent in a resume. 5 minutes later he gets a e mail, is so and so your dad. He says yes, he said come in for an interview. so he is going tomm. I hope it works out. I have been praying alot. He loves his job now but he only worked like 2 hours last week. He is waiting for his boss to get a new contract but I told him that could not happen so look for something more steady etc. So obviously this guy also saw he had great experience where he worked. A small start up company but doing great stuff etc.

Squeegee - how are you doing and how is your pain level??

Angie - thinking of you too. One day at a time. I am sure you are doing a countdown till the end of rads for sure. Also hoping the rads arent tiring you out too much. Hang in there!!

To answer the question - I am not thrilled at all about the new boards. I dont know how to upload a picture. I dont even know if they have avatars you can pick from like they did before. I will miss my tags and I think its a little harder to navigate at present.


----------



## Christine

luvmarypoppins said:


> Christine - interesting about the lower dose as my endo upped mine but she said maybe because of malabsorption  and age etc? Just wondering, you go to  the endo and then get the bloodwork? My endo insists I have all the tests done and then see her etc. so on that note...



Yes, he has me come in first because based on whatever conversations we may have, he makes a choice of what tests to run.  I guess he's trying to save me a lab appointment.  For instance, he normally always runs the thyroid panel, thyroglobulin, and a metabolic panel.  That's standard.  But after our conversation he decided to add on a CBC and a Vitamin D.   We then discuss the results on the phone and make adjustments if needed.

As for the menopause thing, he told me that when you are young and have a lot of circulating estrogen, that estrogen produces a compound that binds to T4 and makes it less absorbable.  Often times, women on oral contraceptives or hormone replacement need a lot more T4 because of the added synthetic estrogen.  When becoming menopausal, your estrogen drops and you have less of that compound binding to your T4 so you often need a dose reduction.

But certainly, age plays a factor in absorption of meds so you could need more, I suppose, if you stomach wasn't breaking it down efficiently.


----------



## squeegee

luvmarypoppins said:


> Christine - interesting about the lower dose as my endo upped mine but she said maybe because of malabsorption  and age etc? Just wondering, you go to  the endo and then get the bloodwork? My endo insists I have all the tests done and then see her etc. so on that note...
> 
> What a day! I realized my endo visit is next week, so I had to call and make a blood test appt. make the bone scan appt. and I might as well forget the ultrasound but we shall see about that one. It will probably take 2 weeks just to get in. Well then I see I cant find y paperwork, sigh, sigh. Calling and thank heavens ds can pick up some new scripts on his way to the univ. library. Dh is not happy as the endo visit is during his meeting. He said this was ok 6 months ago. I also have a meeting then at 3, so I told him just drop me off early etc.
> 
> I am still thinking like squeegee when the blood work can be ok but the ultrasound is not good so that is why I told her I want it all still done at 6 months, she said blood for 6 months and ultrasound for 1 year, um no because mine is the aggressive variant.
> 
> Also based on the bone scan results she is going to have to come up with a new med if its not good.
> 
> And in other news. Ds 1 had a phone interview today, well they lady called and postponed it to tomm. sigh on that one and then ds2 sent in a resume. 5 minutes later he gets a e mail, is so and so your dad. He says yes, he said come in for an interview. so he is going tomm. I hope it works out. I have been praying alot. He loves his job now but he only worked like 2 hours last week. He is waiting for his boss to get a new contract but I told him that could not happen so look for something more steady etc. So obviously this guy also saw he had great experience where he worked. A small start up company but doing great stuff etc.
> 
> Squeegee - how are you doing and how is your pain level??
> 
> Angie - thinking of you too. One day at a time. I am sure you are doing a countdown till the end of rads for sure. Also hoping the rads arent tiring you out too much. Hang in there!!
> 
> To answer the question - I am not thrilled at all about the new boards. I dont know how to upload a picture. I dont even know if they have avatars you can pick from like they did before. I will miss my tags and I think its a little harder to navigate at present.




Keeping my fingers crossed your son gets good news in that interview, or very soon after. 

Pain is more or less under control here, have pushed pain meds out to 7+hours between doses. The ear congestion, itchiness, and general stiffness isn't improving much, but I see my GP tomorrow and can ask her about it.

As for the new boards, it'll take some getting used to. I previously only really used the app, and wasn't all that active anyhow. The reading experience is a little better, and hopefully this will be more reliable.


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## SingingMom

Not used to the new boards yet - just figured out where my subscribed threads were hiding!  Lol

Lots of snow this week. I hate it already. I want to move to Florida NOW!


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## macraven

i'm keeping my question mark for now as i still don't know what i am doing.........
i'm not loving the new format on the boards yet.

but then, i'm not the best when it comes to changes.

LMP,  i read your one son got the nursing job, congrats to him on that!
now a new start for another one of your sons.
crossing my fingers he has a great interview and gets the job.

hope all of you are doing fine and hanging in there with the horrible weather some have had.
we got another 4 inches today on top of what we received the past few days with our blizzard.
(chgo area)
i'm hopeful this will be our last winter here and we will move before the end of the year.


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## Christine

Happy Friday everyone!!  I'm so glad it's finally here.  Temps are bitter here in Virginia today but warming up to the 50s by Sunday.  Crazy!!

I got my test results back yesterday.  The doctor still hasn't called me with them, but my lab posts them after a few days.   

My TSH has gone from .39 to 1.5 (all on the same dose of Levoxyl).  My T4 increased though, rather than decreased wihich is weird.  The lower the TSH the higher the T4 is how it's supposed to be so I can't figure that one out.  I may try to add a tad bit more Levoxyl into my week to see if I can tolerate it without getting the "all night" hot flashes.

My Vitamin D was still low.  No surprise there as I'm not supplementing.  But it did go from 20 in August to 22 in February.  Again, that's odd because it's winter and no sunshine!!

My hemoglobin and hematocrit are solidly mid range which is good.  Last time that were almost low.

Blood sugar, calcium, Tg all excellent.

Glad that visit is over!


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## SingingMom

Bitter here in NJ, too!  More snow coming Sunday into Monday. Hate the icy roads when DD & DH have to drive. 
Had my annual cardiologist appt yesterday - EKG "perfect", but Bp elevated when I walked around her office.  She wants me back for a check next month. Doesn't want to increase my toprol unless necessary.

Need to stay away from stress & go back to Florida!


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## luvmarypoppins

Christine - you are lucky that you get to see your lab results online. I only get mine in a copy from her at the time of the visit. Yes you are right with probably thinking you need a slight med adjustment. 

singing mom - I so hear you about the snow and we are so done with it too, of course more for the week end and Monday. I am totally agreeing with you about getting a place in Florida. Dh and I are thinking about this more and more. Guess we will be joining the snowbirds around here eventually too!

macraven - hope you are moving some place warmer!

Whats everyone reading? I am reading Carla N's new book Echo Lake and its good so far. 

Tomm. is my blood test and bone scan. 

I posted on the destash thread on the budget board. Ds3 and I have been cleaning. Guess we gotta do something in this cold weather.

Angie and Squeegee - thinking of you both.


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## Christine

We were *supposed* to get some snow Sunday night into Monday but the track shifted north so, yep, you NJ people are getting what we thought we were going to get.

Everyone in the DC area is pretty frustrated (although I'm happy).  We keep getting these snowstorm threats (always seems to be on a Sunday night).  If they were to stay in place, we'd get 8 inches of snow, but they always bump up north and we get a surge of warm air and then rain, and you guys get dumped on.  I guess we all just want to get that "one good snow" each year.

I am starting a new book today called The Good Girl or something like that.  Not sure what it's about but I think it's some sort of thriller/psychological book.  Quite honestly, I reserve so many books at the library with my Kindle that I forget what they are about and I just take them as they come!!


----------



## macraven

hello everyone.
i am having a dickens of a time finding this thread.
i listed it as one to watch but have not been getting the alerts until today.

i must have done something wrong when i set up watched threads.

the only thing i have been reading the past few weeks are google pages on medical treatments, conditions, etc.
i would much prefer reading books like the rest of you are.
my Vit D was at 7 but now after months of taking it, i score with a 17 now

i can't figure out how i have put on 12 pounds in 6 months.
i'm not doing anything different with my diet and nutrition so i'm baffled by it.

i don't want to be fat and unhealthy.
i wish i could go to sleep and wake up 12 pounds lighter......

my endo and internist sent me to a thryroid surgeon.
he's noted that i have a high calcium and bun level. so we are off to explore other glands in the neck area now.
he is concerned with my salivia and submondibular glands now
have a mri arranged at the hospital next wednesday.
he is a surgon that deals with the thyroid, parathyroid, and other glands in the neck
the doctor wants to deal with my salivary gland now,
i don't know if i should run the other way now.
i'm so confused about this new medical issue,
im just a mess......

hope those here that have had recent surgeries are doing better and feeling better.
my vitamin level D started at 7 but has now raised to 17 so the ergo is doing something good for my body. i'm taking 50000 of ergo once a week which he feels i should double that dose

have any of you had other gland issues since you have thryoid issues?


----------



## luvmarypoppins

macraven - The only problem I have is sometimes my salivary gland starts to clog up and that requires a hot compress etc. but that is because of the radiation sometimes it doesnt drain right.

Also I have a salivary stone because of the radiation. You can feel it in my upper cheek area like a pebble. Its not a problem, but if it becomes one it would have to be removed Luckily I go to a univ. hospit. They have one dr. who does endoscopic salivary stone removal. Its like a 15 min. procedure that is with anesthesia but he is very specialized to do this. He trained under the wonderful, um, cough, cough, surgeon who almost killed me during my thyroidectomy. 

I hope you can get your issues resolved. I am sure you just want to feel like you.

Well got the blood test today. I was 10 min. late for my appt. The place was so crowded. Well they took me right away, hmm, I guess no one else made an appt. Dh said one lady was saying why did they take her lst, I need my test, do you want me to cry??? I think its obvious no one knows to make an appt.

Next was the bone scan. I think this place will go out of business. I only picked it because they are open on sat. I have always gone here. Another co. bought it out. I was the only patient there. I have gotten mammos there during the week and there were sev. other patients. There is another new facility but the parking and waiting room is horrendously crowded so I usually dont go there unless the dr. says to. 

My tech was great. Sweet lady. So now we will see.


----------



## AllisonK

I just found this thread. I'm going for a FNA on Tuesday (weather-permitting, most likely... darn Massachusetts snowstorms). I had an appointment with my PA about a month ago (she is fantastic) because I had been feeling a bit overwhelmed (my job was stressing me out, I was in a car accident in November and miraculously just got some scratches and bruises, almost lost my 18-year-old cat (yup, she's made a miraculous recovery - she was just being a brat while my parents were on vacation and stopped eating for over a week despite a two-day stay at the emergency vet) and am seeing my grandparents deteriorate very quickly) and VERY tired - sleeping 8+ hours a night, drinking lots of water, getting ample exercise (I go to the gym just about every other day and have lost 80 pounds since I graduated college 3 and a half years ago) and still wanting to do nothing more than lay on the couch at night/on the weekends. 

Anyway, my PA found a lump, ordered some blood work (all of which came back normal, apparently - even my vitamin D which was 54, up from about 12 four years ago) and an ultrasound. I went for the ultrasound two weeks ago and I have an enlarged thyroid, multiple cysts and a 3.5 cm nodule. I know there is absolutely something going on so naturally I am a bit freaked out. I am also incredibly freaked out at the thought of multiple needles in my throat (I don't particularly do well with needles anyway - I'm better if I can't see them, but I have a feeling there will be no looking away from these needles. I also don't know anything about the endocrinologist I've been referred to - only that my mother's endocrinologist is in the same office - and that is also making me quite nervous.


----------



## luvmarypoppins

Allison just wondering if you are the same Allison who posted a few years back about kerataconus and driving to Hofstra? Is that you or maybe I have you mixed up with another Allison. 

The fna is not all that bad. Just try to stay as still as you can. 

Its good you are having this taken care of. Treat yourself to starbucks etc. after your fna. 

The worst part is waiting for the results. It should be about a week and if its more than that I would def. start calling whoever did your biopsy. 

Can you go to your mom's endo if it is someone she likes and trusts if you are concerned about the one you have been referred to?

Its great that you lost all that weight. Congrats!

Wishing you all the best and let us know how it goes.


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## AllisonK

luvmarypoppins said:


> Allison just wondering if you are the same Allison who posted a few years back about kerataconus and driving to Hofstra? Is that you or maybe I have you mixed up with another Allison.
> 
> The fna is not all that bad. Just try to stay as still as you can.
> 
> Its good you are having this taken care of. Treat yourself to starbucks etc. after your fna.
> 
> The worst part is waiting for the results. It should be about a week and if its more than that I would def. start calling whoever did your biopsy.
> 
> Can you go to your mom's endo if it is someone she likes and trusts if you are concerned about the one you have been referred to?
> 
> Its great that you lost all that weight. Congrats!
> 
> Wishing you all the best and let us know how it goes.


Yes, that's me! I graduated from Hofstra back in 2011 with a degree in print journalism (ha..) and am still managing the keratoconus very well with hard contacts. Thanks for the kind words! I will definitely be treating myself afterwards (I have to head to the Apple Store after to get my laptop looked at - it won't turn on - so I will be stopping by the Pinkberry in the mall for a frozen yogurt!) and hopefully the waiting won't be too terrible.


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## luvmarypoppins

Well I went for my blood work Hmm, I guess I was the only one with an appt. I even got there 10 minutes late. The place was packed. Dh said when I went in some older lady said - why did they take her first, I have been sitting here a long time, what do they want me to do, cry? I need to get these tests done etc. Gheesh, I guess no one knows that the appts are available on line. 

Then I got the bone scan. I was the only one in the place. This is a new co, who bought out the old one. Somehow I dont think this place will be in business soon. I can go somewhere else but the other place is always crowded and terrible parking. My tech was nice. 

Now today the endos office called and wants to know where my test results are. I will call them back tomm. Oh and I a sure they wont be happy that I didnt get the sono, well she said she only wants it every year when I wanted it at 6 months and I had one in August. I will get it soon depending on when someone can take me. 

I am getting butterfly . Always happens before the visit. 

Alison - My ds is gong to a new dr. for the kerataconus. He needs to make a recheck appt. He does not do well with contacts. He had a corneal abrasion from the last ones so he refuses to try them again. Hope you are able to get the fna tomm. despite this terrible weather you are all having up there. Wishing you all the best.


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## AllisonK

luvmarypoppins said:


> Alison - My ds is gong to a new dr. for the kerataconus. He needs to make a recheck appt. He does not do well with contacts. He had a corneal abrasion from the last ones so he refuses to try them again. Hope you are able to get the fna tomm. despite this terrible weather you are all having up there. Wishing you all the best.



Thanks! I shouldn't have much of an issue getting there - the roads are pretty decent in my city and they didn't close or delay schools, so it shouldn't be horrible. Unfortunately we got the call at 6:30 this morning that my grandfather passed - it wasn't unexpected, but it was sudden - and so that's just adding to my anxiety this morning.


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## luvmarypoppins

Allison - so sorry about your grandfather and I hope you were able to get the fna and that it went ok for you.

squeegee and Angie - hope you are both doing ok. 

Well this will be lots of news. Dh took me to my endo visit today. She said my bp was good, I lost more weight again, that was strange because I was not even trying. My cancer numbers are undetectable. I think she said .2. Right where she wants the tsh. The bone scan showed that the osteoporosis did not change in 2 years so she will not give me a new med. She does want me to see the gastro because of the one med I am on that causes cancerous tumors of the stomach. She still wants me to get the sono of my neck - told her that is coming up. So I dont have to go back till Sept. because she is taking the whole month of August off and going to visit her family in Greece. She always does that. 

And in other happy news...ds2 got a job offer. Its the only job he applied for and he went for his 2nd call back interview yest and they made him an offer. He starts tues. Ds3 is doing well in nursing orientation. Its just classroom stuff for 2 weeks. He really wants to get on the floor. Ds 1 still is looking for a job. Its been a long time. Some teams appealed about some bad refs, so now ds team is in the playoffs. So he will be doing that for a little while longer.  

Thinking of you all. Check in when you can.


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## squeegee

Got my surgical pathology report yesterday - they took out 60+ lymph nodes and only three were positive, from levels 2b and 3. I feel like I finally got some good news in this process. 

I see my endo the 26th to get going on the RAI, and orchestrating all of that, ensuring there's someone to watch my three year old daughter while I go through withdrawal and isolation, is the next headache. 

Here's hoping everyone has as good a valentines day as possible!


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## luvmarypoppins

squeegee - that is a really good count! But wowsa that was alot of lymph nodes for sure! Love your count down ticker for your dds first trip. I have never stayed at PO, but it looks lovely. I hope your endo visit goes well. Did you have really strict radiation precautions and diet the last time? I am guessing you are doing the total withdrawl. I have seen the others post here and I couldnt imagine doing that. My rad. onc. is thyrogen only now. I think she said she is like the 4th or 5th biggest user of it in the US so they always have a supply on hand. We will be here to give you some LID encouragement if you need it for sure!! 

Angie - thinking of you. Hope all is going well and miss you posting. 

Allison - I am sure you are getting anxious waiting for your results and dealing with the bad weather up there. Sending you my sympathy too.

Christine - did you have to go to work in the snow?? I havent been reading alot lately.

Yest. I had a terrible virus or something. I felt so nauseous and had chills, aches etc. Its getting better today. I felt miserable. Dont know where I got it from. I only went to the grocery store and out to eat for dh b day. Maybe there? Not food poisoning but viral type. 

Ds3 wants to leave the snow and go to Disney. Oh good my new travel buddy with a nurse discount at the Dolphin to boot! I am sure we will work something out sometime depending on his schedule. Also nurses get paid very well, gheesh!


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## squeegee

luvmarypoppins said:


> squeegee - that is a really good count! But wowsa that was alot of lymph nodes for sure! Love your count down ticker for your dds first trip. I have never stayed at PO, but it looks lovely. I hope your endo visit goes well. Did you have really strict radiation precautions and diet the last time? I am guessing you are doing the total withdrawl. I have seen the others post here and I couldnt imagine doing that. My rad. onc. is thyrogen only now. I think she said she is like the 4th or 5th biggest user of it in the US so they always have a supply on hand. We will be here to give you some LID encouragement if you need it for sure!!



This doc made an offhand mention that he does thyrogen if the insurance will cover it. I don't know if mine will or not. I did the whole LID and withdrawal last time, yep. It sucked, but I can do it again if I have to. Do you have to do LID with thyrogen?
The part I'm dreading is the isolation. I know my DD is going to try pounding the door down to get to me, and it's going to be heartbreaking. At least my parents will be here - she loves grandma - so hopefully they can keep her occupied for 10 days+.


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## Christine

LMP - During the snow day, the government closed; however, anyone under a telework agreement has to work (so the government never really closes anymore).  So  I teleworked.  But honestly, it was an "easy" snow this time.  Very powdery and cleared off the roads quickly with one swipe of the plow!!

squeegee--  You have to do the the LID anytime use are using RAI.  So if you using Thyrogen but going to have a scan, then you have to do the LID.  If you are using Thyrogen but only have a thyroglobulin blood test, then you should not have to do the LID.


----------



## luvmarypoppins

squeegee - yes I had to do the lid with the thyrogen. My lid was a combo of nih guidelines, thyca guidelines and my rad. onc. own guideline. I couldnt even have tap water, only distilled. And all I can say is than heavens I wasnt at MSK Cancer Center in NYC because they say no bananas and that is all I lived on for breakfast for 2 weeks , I actually only ate oatmeal once or twice, yuck!! The worst part was cooking for my family. It was ok for the first week, but by the second week I actually had them get more take out stuff and eat by themselves in the kitchen because it was psych. getting to me that I couldnt eat the regular food etc. 

I did ok with the salads for lunch. For dinners I like to mix up the colors on the plate to make it look more appealing. I would alternate the meat with mashed potatoes, basmati rice and no yolk noodles. Also I used alot of steamfresh vegetables from birdseye with no sauce because they are safe they told me.     Desserts and snacks were PB on matzoh, PB (lid safe) with carrots and celery, popcorn in the microwave (plain), I tried christines banana in the oven I think too. Also apple in the microwave with cinnamon, tasted like apple pie.  etc. 

How strict was your radiation isolation? I cant imagine it with your little one. My dh has a background with it so they were happy and fine. I think he was telling the rad. onc. a thing or two, lol. She said, I dont think scientifically about it like you, I think medically. He was calculating the half lifes and when I would be less radioactive etc. Dh slept on the couch for a week and used our 2nd bathroom. I just had to keep 15 feet away from everyone. I even stayed in the same room as dh. They told me to use the same plate,cup, and silverware for week. I had to wash it in the bathroom sink. Double flush the toilet, let the shower run for 10 minutes etc. She told me if I used a computer keyboard or tv controller to use rubber glove so the sweat wont get on it. 
I guess you could actually get out when your dd is sleeping. Glad we didint have any pets too. 

I know you will get a good plan in place. Maybe a little countdown thing for your dd would be fun to do to help her understand more. 

Thinking of you and we will be here for emotional support!!


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## squeegee

luvmarypoppins said:


> squeegee - yes I had to do the lid with the thyrogen. My lid was a combo of nih guidelines, thyca guidelines and my rad. onc. own guideline. I couldnt even have tap water, only distilled. And all I can say is than heavens I wasnt at MSK Cancer Center in NYC because they say no bananas and that is all I lived on for breakfast for 2 weeks , I actually only ate oatmeal once or twice, yuck!! The worst part was cooking for my family. It was ok for the first week, but by the second week I actually had them get more take out stuff and eat by themselves in the kitchen because it was psych. getting to me that I couldnt eat the regular food etc.
> 
> I did ok with the salads for lunch. For dinners I like to mix up the colors on the plate to make it look more appealing. I would alternate the meat with mashed potatoes, basmati rice and no yolk noodles. Also I used alot of steamfresh vegetables from birdseye with no sauce because they are safe they told me.     Desserts and snacks were PB on matzoh, PB (lid safe) with carrots and celery, popcorn in the microwave (plain), I tried christines banana in the oven I think too. Also apple in the microwave with cinnamon, tasted like apple pie.  etc.
> 
> How strict was your radiation isolation? I cant imagine it with your little one. My dh has a background with it so they were happy and fine. I think he was telling the rad. onc. a thing or two, lol. She said, I dont think scientifically about it like you, I think medically. He was calculating the half lifes and when I would be less radioactive etc. Dh slept on the couch for a week and used our 2nd bathroom. I just had to keep 15 feet away from everyone. I even stayed in the same room as dh. They told me to use the same plate,cup, and silverware for week. I had to wash it in the bathroom sink. Double flush the toilet, let the shower run for 10 minutes etc. She told me if I used a computer keyboard or tv controller to use rubber glove so the sweat wont get on it.
> I guess you could actually get out when your dd is sleeping. Glad we didint have any pets too.
> 
> I know you will get a good plan in place. Maybe a little countdown thing for your dd would be fun to do to help her understand more.
> 
> Thinking of you and we will be here for emotional support!!



I think the thing I missed most during the diet was dairy - butter, cream, milk - all of those are such an important part of my cooking. I can't imagine mashed potatoes with no butter or cream in them.  I tried that "earth balance" vegan, no sea-salt, no soy "buttery flavored spread", and thought it was one of the foulest things ever. "No butter" means that most veggies are not something I want to eat - except maybe carrots. Plain, raw carrots. 
I figure I'll just be eating a lot of fruits and smoothies. LOL. I love oatmeal, too, but it's gotta have half-n-half. Mmmmm. 

Isolation was pretty strict last time because DD was 18 months. I imagine it'll be much the same this time. 3 days inpatient, 7 days in my bedroom at home, and then another month or so of sleeping alone (she usually sleeps with me, so this will be the hard part) and trying to maintain a little distance. I am already nervous that she's going to have this cancer in the future, because I must've had it while I was pregnant with her (but didn't know). I will err on the side of caution when it comes to possible exposure for her. 

We have a dog, but she's already about 8 years old, so I'm not worried that any exposure to her would cause a problem. I love my doggie, but she'll cross the rainbow bridge before this kind of exposure could cause any problems. 

And in case I haven't said it lately, thank you all for your thoughts and prayers.


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## macraven

just a quick  drive by to see how everyone is doing.

i won't mention weather/snow as we all know what it is like at this point.........


wish the best for all here, hope all are staying well.


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## SingingMom

Quick hello to let you know DD21 was accepted to Disney College Program!  She graduates in May and moves to Florida in August!! We are so happy for her but will really miss her!!! It is her dream to stay after the internship as a full time Disney employee, so I guess we will end up in Florida before long!  Lol


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## macraven

that's fantastic news singing mom...


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## squeegee

SingingMom said:


> Quick hello to let you know DD21 was accepted to Disney College Program!  She graduates in May and moves to Florida in August!! We are do happy for her but will really miss her!!! It is her dream to stay after the internship as a full time Disney employee, so I guess we will end up in Florida before long!  Lol


WooHoo! I wish I'd been a Disney fan when I was young - all of those opportunities wasted. LOL.


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## luvmarypoppins

singing mom - congrats to your dd!! That is so wonderful. I am sure she will have a great experience. You will def. have to visit her alot!! I see many trips in your Disney future!

Allison - any news on the fna??? Wishing you all the best.

squeegee -  hope your visit goes well today and you get a good plan in place. 

Christine - reading anything good. I am still reading my cont romance. But I just won 3 books and all the authors contacted me themselves. Awesome! Just got one and she signed it, not my name but best wishes! Its a historical romance so that is next on the list. 

macraven - is your avatar health related? 

I have 3 meetings this week - thurs, fri and sat, ugh! My dh is off to chicago thurs. and ds1 is going on a job interview, yeah for that and ds2 and ds3 are exhausted from their new jobs. 

Thinking of you all. Check in when you can.


----------



## AllisonK

luvmarypoppins said:


> singing mom - congrats to your dd!! That is so wonderful. I am sure she will have a great experience. You will def. have to visit her alot!! I see many trips in your Disney future!
> 
> Allison - any news on the fna??? Wishing you all the best.
> 
> squeegee -  hope your visit goes well today and you get a good plan in place.
> 
> Christine - reading anything good. I am still reading my cont romance. But I just won 3 books and all the authors contacted me themselves. Awesome! Just got one and she signed it, not my name but best wishes! Its a historical romance so that is next on the list.
> 
> macraven - is your avatar health related?
> 
> I have 3 meetings this week - thurs, fri and sat, ugh! My dh is off to chicago thurs. and ds1 is going on a job interview, yeah for that and ds2 and ds3 are exhausted from their new jobs.
> 
> Thinking of you all. Check in when you can.


Thank you! Nothing yet - I have my appointment with my endocrinologist on Thursday. The doctor is very nice, but if it turns out I will need surgery I have the name of a doctor up at Mass Eye and Ear in Boston who specializes in thyroid removal. He is my voice teacher's endocrinologist and he takes extra care of singers. I am already a patient at Mass Eye for my eyes, so I've been going up there for the past 8 years and the doctors are wonderful. I'm pretty nervous about my appointment on Thursday but keeping focused on auditions of a production of Legally Blonde tonight. It's my favorite show and I've been working so hard for these auditions!


----------



## squeegee

Saw my endo today. He is planning on radiation, just like last time, but says I have to wait three to four months because I had two CT's with contrast in January. So, am looking at end of May for radiation. Why, oh why, can nothing be simple? LOL. 

He was concerned that I am still having pain in my shoulder and wants me to return to the surgeon ASAP. Am trying now to get an appointment with them. Their scheduler is saying they have nothing available until the 17th, and she has to get approval from the Dr and/or his PA to squeeze me in earlier. Grrrrrr.  My leave from work expires on the sixth, and I'm still having enough pain I can barely make it through a grocery trip without paying for it dearly later. 

I had anticipated the extra healing time from hopping straight into radiation/isolation, but now I've got to get this handled. So fun. 

At least they released MVMCP dates, so I can go play with my spreadsheet for a little distraction while I wait for the surgeon's office to call back.


----------



## macraven

LMP, well, my avatar is a picture of David in a hospital bed .....but it's not really a health related picture.
it was taken in one of the darkside hhn houses while i was on a tour.
american werewolf in london was the house theme.
i am standing with a gentleman that has done some creative work with the event.

i've had some health issues and i thought it was my thyroid causing it.
after another MRI, i was sent to a surgeon.

found out, even though i have thyroid (hashimoto) disease, my problem this time isn't the thyroid but my salivary glands.
my neck started to swell last month and have a bulge in the neck.
with the bulge in the neck, the endo redid my labs and said the thyroid is not the problem.
sent me to an ENT surgeon and now i am having salivary gland surgery next thursday.

in a matter of 14 days, i have seen two specialist, had the MRI,  had the pre op exam yesterday, labs drawn today 
and in the home stretch for surgery next week.

don't laugh but the hardest part of all of this has been going to the doctors and hospital when it has been frigid temps.....
in and out of the car, in and out of a medical building, during the coldest and windy periods in the day.


----------



## AllisonK

I got the results of my FNA on Thursday. They were indeterminate with about a 30-40% chance of cancer, so I will be having my whole thyroid removed sometime in the coming weeks. My endocrinologist is sending me to Boston Medical Center (about an hour or so away - I am so lucky I live fairly close to some of the best hospitals in the world) for the surgery, which will be in-patient. I managed to get a consult with the surgeon for Tuesday, so hopefully I will be able to schedule the surgery quickly and get it over with. I've never had surgery before (well, I had my wisdom teeth out and they did knock me out for that) and have never stayed overnight in the hospital before (besides a few days at Boston Children's as an infant) so I am a bit nervous about that aspect. 

I also may have to drop out of the play I am doing in April (Fiddler on the Roof) but the director is very understanding and said if I am up to jumping back in I am more than welcome to, but if not it's OK. And I was also cast in a production of Legally Blonde in May, which I am confident I will be able to do, as I am hopefully having the surgery this month. I worked SO hard for that audition and although I didn't get any of the roles I wanted, I have a fantastic featured speaking role and I am part of the ensemble. And my voice teacher is a thyroid cancer survivor and she is also confident that if I have the surgery soon I will be good to go by May. She did tell me I will be tired while my body is adjusting to the meds, but I have been tired since December or so, which is what pushed me to go to the doctor's in January. I was convinced my Vitamin D levels were low again and my PA did a neck check and discovered my nodule.


----------



## luvmarypoppins

macraven - wishing you all the best with your surgery. What will they be exactly doing with your salivary glands. Do you have stones? I have one that you can feel like a pebble in my cheek. 

Allison - sorry to hear that you have to have the surgery. I hope you like your surgeon. Wishing you all the best and keep us updated.

Angie - thinking of you too and hope things are going well for you. Hang in there! 

I am tired. I did 3 days of meetings. I still think when the weather is better I will go to dr. waste my time and ask for a b12 blood test. I am always tired. I need the mammo script from him anyway. 

Its snowing here again and lucky dh left for Calif. this afternoon.  This snow is weary. 

My cousins daughter who was 17 was tragically killed in a car accident. It was her fault as she did not yield and a truck hit her. The viewing is tomm but we have no way of getting there with the bad weather and 2 of the ds working and dh away. Its in the next state too. This girls mom, my cousin (We grew up as cousins but we are not related by blood) died when she was 9. A very sad situation all around. Her parents were my kids guardians when they were little in case anything happened to dh or I.


----------



## macraven

allison,  to you on your upcoming surgery.
i know it is scary but you will come out of it like a champ.

LMP,  that is sad about your loss no matter who was at fault in it.
so sorry you are dealing with this.
i hear you, i'm getting tired of doctors also.

i have had 3 surgeries on the ducts of the salivary gland in the past years.
each time it was for stone removal.  the longer they stay stuck in a duct, the greater possibility for bacterial infection.

the mri showed the ducts are now mangled and the stones can't move, they are stuck.
hopefully i will have the ducts dialated so the surgeon can remove the stones in the basket way.
then he will stent the ducts which will be removed 3 weeks later.
if he can't correct the ducts, then it is removal of the salivary gland.
i'm thinking positive on this.
he told me if he has to make a decision during surgery to remove the gland, he will try to do the incisions in the fold of the outer neck to hide the future scarring.
he works with thyroid and neck cancers but he took me on as a patient.

lmp, is this the first time you have had a stone?
my past surgeons always told me to massage the neck/facial area towards the mouth.
it can help move the stone if it has been caught in the duct.
and, sucking on lemon drops helps the saliva over produce which also helps move the stone out.
it will be released from the duct under your tognue.
if you see anything white at the tip of that duct, use the lemon drops.
the stone is close to leaving your body and the rush of saliva will force the stone out.
sounds like yours is in the paratoid saivary gland.


----------



## SingingMom

Allison - as a singer and thyroid cancer survivor, let me just let you know my surgeon told me no singing for at least 6 weeks after my thyroidectomy. I had to cancel singing at my friend's wedding and Easter season at church.  Just keep that in mind when deciding on going back to performing.  After the vocal rest, I was good as new. 

LMP - very sorry to hear about your cousin.  We had a similar death in my cousin's family a few years ago.  It was in all then papers and a horrible tragedy. Two teens were killed and one survived. Very hard to see a young person's life cut short. :-(


----------



## dazedx3

Hello. I just found this thread, and have been reading many of your stories.  On Christmas day, i was leading a family game when I reached up and felt a lump in my neck...I thought maybe it was just a swollen gland but it seemed to get bigger. So I went to my GP and she immediately sent me for blood work and an ultrasound.  My blood work was normal, the Ultra S. showed a 3cm nodule on my thyroid.  I had a FN biopsy done and the results came back "atypical".  The Endo said I have to wait 8 weeks and have another biopsy done and a more specialized test.   The waiting is making me a little uneasy.  I've heard some people have the nodule removed even if the results are not malignant,   Thoughts?  Thanks


----------



## Christine

dazedx3 said:


> Hello. I just found this thread, and have been reading many of your stories.  On Christmas day, i was leading a family game when I reached up and felt a lump in my neck...I thought maybe it was just a swollen gland but it seemed to get bigger. So I went to my GP and she immediately sent me for blood work and an ultrasound.  My blood work was normal, the Ultra S. showed a 3cm nodule on my thyroid.  I had a FN biopsy done and the results came back "atypical".  The Endo said I have to wait 8 weeks and have another biopsy done and a more specialized test.   The waiting is making me a little uneasy.  I've heard some people have the nodule removed even if the results are not malignant,   Thoughts?  Thanks



This sounds pretty standard and, I will tell you, even if your lump is "normal" it is very hard to get a normal, clean biopsy.  My friend finally did after two sessions of biopsies; however, she ended up having it all removed because, really, who wants to be walking around with a massive lump in their neck?  After all the biopsies and surgery, she was found to have a microscopic papillary thyroid cancer there.  Fortunately, it was so small that no other treatment was necessary--she just follows up twice a year with an endocrinologist, blood work, and ultrasound.  

It sounds like you may already know what's on the horizon.  Do you want to have a lump in your neck all the time? If it doesn't bother you, you can let it go but you will probably need an ultrasound once a year to follow it.  Many of these lumps grow internally and people aren't aware of how big they are getting.


----------



## AllisonK

Does anyone know where I can find Vitamin E cream? I know it helps with the healing of incisions. I looked at Target yesterday and at Dollar Tree a few days ago but I haven't found anything. I still have some time - my surgery isn't until March 23 - I just want to be prepared!


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## macraven

check for the cream on amazon.
if you can't find what you want in the stores, online shopping would be beneficial.


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## SingingMom

AllisonK said:


> Does anyone know where I can find Vitamin E cream? I know it helps with the healing of incisions. I looked at Target yesterday and at Dollar Tree a few days ago but I haven't found anything. I still have some time - my surgery isn't until March 23 - I just want to be prepared!



Any chain drug store will carry it. CVS, Walgreens, etc.    you can also pierce a vit E capsule and rub it on your scar.   Also remember to be diligent with sunscreen. My scar is practically invisible.


----------



## Christine

macraven said:


> check for the cream on amazon.
> if you can't find what you want in the stores, online shopping would be beneficial.


I was always told to just break open a capsule.


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## squeegee

Got in today for that followup with my surgeon - he's sending me to PT, and gave me approval to go back to work in two weeks. It feels good to be making progress, and it will be nice to get back to work. 

Have any of y'all done PT for a shoulder post-dissection? What should I expect?

I hope everyone's doing as well as can be.


----------



## macraven

shoulder surgery?
that i have had.
went through a rotator cuff surgery on both shoulders and then a full shoulder surgery where bone was cut out.
my shoulder scar is from under the arm pit to all around the top to the back.

my PT went for almost 8 months.
the tendon repair work is what made my pt go so long.

the pt is worth it.
you'll get full range of motion back.


----------



## macraven

Christine said:


> I was always told to just break open a capsule.



that sounds more logical and cheaper.


----------



## squeegee

macraven said:


> shoulder surgery?
> that i have had.
> went through a rotator cuff surgery on both shoulders and then a full shoulder surgery where bone was cut out.
> my shoulder scar is from under the arm pit to all around the top to the back.
> 
> my PT went for almost 8 months.
> the tendon repair work is what made my pt go so long.
> 
> the pt is worth it.
> you'll get full range of motion back.



I can only imagine how painful recovery from shoulder surgery must be, given how bad just the dissection has been. Wow. Am glad to hear PT was truly beneficial, though. Thank you!


----------



## luvmarypoppins

dazedx3 - wishing you all the best with the next biopsy. I had to have several too. Did they tell you what the other test is, perhaps the afirma test?

Allison - wishing you all the best with the surgery. As singing mom said, it does take a while to get your voice back. I used to have a good singing voice but that is gone now, oh well. Dont push it too much. Your body will be through an ordeal and needs time to heal for sure. 

maccraven - wishing you all the best with your salivary gland surgery. 

squeegee -I did pt post neck dissection I went to a terrible place, but it was only the place my ins. paid for. The owner would just sit there and watch me do all the work myself. He would only be hands on when doing the last 5 minutes and putting the ice pack on. I remember I had to use resistance bands alot and wights attached to the wall like a pulley I think. 

singing mom - It will be so fun visiting your dd and I am sure she will be giving you lots of inside info!

Most important thing, I asked him for exercises to do at home and he refused to give them to me. He said in a while etc. I think he actually did this so I would keep coming to the office for more visits. I had to stop the pt because of all the stomach surgery I had to have. So I would def. ask them for exercises to do at home too. 

Christine - reading anything good? I am a slow reader for sure. I am still doing my civil war historical. Almost done and then starting a ya book. I won it from the author so I hope I like it. 

Well just when we thought it was spring, we are getting 3 inches of snow on friday, sigh. My dh is going to chicago, coming back for a day and then heading to washington dc for a week. He is going to be at the dept. of (sorry I never mention that), sorry its not yours christine, lol! He has to talk for a week, blah, blah. 

Dh is talking about a May disney trip. Ds is graduating with the bsn. The ceremony I think is 7:30 am, gosh! The date time frame I would really like to go so I will look at dates and we have enough ff miles to stay at the Swan for free for 7 days, yippee!

I need to get going on some of my med.stuff. Also dentist as that will be interesting too. 

Thinking of you all.


----------



## squeegee

luvmarypoppins said:


> dazedx3 - wishing you all the best with the next biopsy. I had to have several too. Did they tell you what the other test is, perhaps the afirma test?
> 
> Allison - wishing you all the best with the surgery. As singing mom said, it does take a while to get your voice back. I used to have a good singing voice but that is gone now, oh well. Dont push it too much. Your body will be through an ordeal and needs time to heal for sure.
> 
> maccraven - wishing you all the best with your salivary gland surgery.
> 
> squeegee -I did pt post neck dissection I went to a terrible place, but it was only the place my ins. paid for. The owner would just sit there and watch me do all the work myself. He would only be hands on when doing the last 5 minutes and putting the ice pack on. I remember I had to use resistance bands alot and wights attached to the wall like a pulley I think.
> 
> singing mom - It will be so fun visiting your dd and I am sure she will be giving you lots of inside info!
> 
> Most important thing, I asked him for exercises to do at home and he refused to give them to me. He said in a while etc. I think he actually did this so I would keep coming to the office for more visits. I had to stop the pt because of all the stomach surgery I had to have. So I would def. ask them for exercises to do at home too.
> 
> Christine - reading anything good? I am a slow reader for sure. I am still doing my civil war historical. Almost done and then starting a ya book. I won it from the author so I hope I like it.
> 
> Well just when we thought it was spring, we are getting 3 inches of snow on friday, sigh. My dh is going to chicago, coming back for a day and then heading to washington dc for a week. He is going to be at the dept. of (sorry I never mention that), sorry its not yours christine, lol! He has to talk for a week, blah, blah.
> 
> Dh is talking about a May disney trip. Ds is graduating with the bsn. The ceremony I think is 7:30 am, gosh! The date time frame I would really like to go so I will look at dates and we have enough ff miles to stay at the Swan for free for 7 days, yippee!
> 
> I need to get going on some of my med.stuff. Also dentist as that will be interesting too.
> 
> Thinking of you all.



Wow. Sorry you had such a lousy physical therapist. I had my first session, and am SO wishing I had insisted on going sooner. The pain was dramatically reduced by the time they were done. There was about an hour, maybe more, of measurements, stretches, massage (to break up the scar tissue behind the incision), and ice pack with some kind of electrical stimulation machine. 

They did give me exercises to do at home, which seem to help a little, too. The therapist said that the pain is from an inflamed brachial plexus, affecting the medial, radial, and ulnar nerves, not necessarily anything wrong with the joint or muscles themselves, so I guess that's good. I see them again Friday, and twice a week for the next 4-6 weeks. It hurts the pocketbook, but is sooooo worth it for getting this pain under control. 

Best wishes to everyone.


----------



## Christine

luvmarypoppins said:


> Christine - reading anything good? I am a slow reader for sure. I am still doing my civil war historical. Almost done and then starting a ya book. I won it from the author so I hope I like it.
> 
> Well just when we thought it was spring, we are getting 3 inches of snow on friday, sigh. My dh is going to chicago, coming back for a day and then heading to washington dc for a week. He is going to be at the dept. of (sorry I never mention that), sorry its not yours christine, lol! He has to talk for a week, blah, blah.



No, I haven't had a "great" book in awhile.  I only get to read about 30 minutes each night so it seems like it takes me forever.

We got some snow here today too but it was too warm to amount to anything.  Just a lot of WET.


----------



## macraven

christine, are you ever going to stop having snow.......
your weather has been just so awful this year.
today is the first day of spring but i don't think you are going to see robins out yet.

i'm so behind in my reading this year.
i used to always have a book to read each evening.
adult son that lives with us had hernia surgery the day before i had my surgery.
hernia and he is restricted for another 3 more weeks of doing anything.
today, he had deviated septum surgery.
two different surgeries 16 days apart.
he had a bleeding issue so we were at the hosptial for 4 hours in recovery.
he is up and down this entire evening....which means i am still up at 3 in the morning.

i need a book to read......
that is on my shopping list for later this week!

hope all are doing fine and those that are now going through medical issues, you are on my prayer list.


----------



## AllisonK

I just got home from the hospital about a half an hour ago. My surgery went really well and they removed the whole thyroid without nerve damage - my surgeon remembered I am a singer. I went into the OR about three hours late yesterday and got into recovery sometime around 6:30 p.m. I had some issues with nausea last night despite the patch behind my ear and about three doses of Zofran. I was moved to my room around 8:30 or 9:00 and the nausea subsided by midnight or so. I didn't sleep much and was woken up quite often, but I got my contact lenses in this morning and the only pain I have is right around the incision site and from the breathing tube in my throat. My parents got to the hospital around 11:00 this morning and I was discharged by 1:00 or so. I started on the levotheroxyn this morning and calcium pills as well and my thyroid was sent to pathology after surgery and hopefully I'll have the results of that when I go to the surgeon's office for follow-up in two weeks.


----------



## macraven

hope your pain lessens and you feel better real soon.


----------



## squeegee

AllisonK said:


> I just got home from the hospital about a half an hour ago. My surgery went really well and they removed the whole thyroid without nerve damage - my surgeon remembered I am a singer. I went into the OR about three hours late yesterday and got into recovery sometime around 6:30 p.m. I had some issues with nausea last night despite the patch behind my ear and about three doses of Zofran. I was moved to my room around 8:30 or 9:00 and the nausea subsided by midnight or so. I didn't sleep much and was woken up quite often, but I got my contact lenses in this morning and the only pain I have is right around the incision site and from the breathing tube in my throat. My parents got to the hospital around 11:00 this morning and I was discharged by 1:00 or so. I started on the levotheroxyn this morning and calcium pills as well and my thyroid was sent to pathology after surgery and hopefully I'll have the results of that when I go to the surgeon's office for follow-up in two weeks.


Glad to hear everything went well - wishing you a speedy recovery!


----------



## AllisonK

macraven said:


> hope your pain lessens and you feel better real soon.





squeegee said:


> Glad to hear everything went well - wishing you a speedy recovery!


Thank you! I'm feeling much better today - still a little sore at the incision site and my throat is still a bit sore as well (and my voice is still pretty shot) but feeling a lot better. My face is a bit swollen though, but I have a feeling that's pretty normal as I was hooked up to the IV for over 24 hours when I was in the hospital so I had plenty of fluids pumped into my body. I'm still a bit tired as well, but feeling better overall.


----------



## Christine

Sounds like it all went very well.  That's great news.  And hoping for a wonderful pathology report!


----------



## luvmarypoppins

Allison - glad your surgery went well. The voice will take a little while to come back. Rest up and wishing you all the best with the path results. 

macraven - how are you feeling post op. I cant believe your son had both surgeries so close together. Ds2 had the deviated septum surgery along with turbinate surgery the week after one of my hernia surgeries. We had to work that surgery around my radiation and the other ds felt bad because I had to also try and help ds2 with ice packs etc. He was miserable for days. He was only allowed to sleep in a reclining position so he was on the couch for a few days. The packing was horrid he said. He felt so much better when it came out. He was spitting up blood alot. Hope your ds is on the road to recovery. 

I wish we heard from Angie. She hasnt posted in such a long time. Hope all is well with her. 

My dh is coming home tomm and said he will spend the whole week end with me, um that translates into I will sit in my chair and do all my regular work I need to catch on from the week I was gone. 

Oh and because of this they have asked him to go to Shanghai in June and Germany in Sept. plus throw in his usual calif. trips and I am getting weary of this for sure. Ds3 had us facetime tonight. 

Our house needs lots of tlc so I am wondering about the May trip, just never enough time to do everything. I am still going to try and schedule all the medical stuff.


----------



## macraven

allison, you'll be feeling better and better as the days go by.
keep us posted on your progress!

lmp, i enjoy reading your posts as you are always so nice to everyone and remember what is going on in their lives.

you'll be glad to have Mr LMP home with you this weekend.
sit in the chair and and do your thing while he visits with you.

go to Germany!
and Shanghai....
and disney 

going on vacation is the spice of life.

i had the stitches out from the bottom of my mouth and was feeling so good for 3 days.
then the ducts collapsed and i'm back where i started from.
going back monday to the surgeon.
he wants me to join the club of having the scar from the side of the jaw to the middle of the neck.
he says i now need the glands taken out.
i'm not sure if i'm ready for this ..

son has had a pathetic time with two surgeries 16 days apart.
6 days ago was the deviated septum and tomorrow is a post op visit.
he says his nose feels like it is on fire with the burning sensation he has.
he has lost 18.5 lbs in this time period from the first surgery to today.

i totally understand how your son felt when he had his surgery.
so difficult to sleep in a recliner and not be able to breathe out of your nose..

it's hard for moms to see their kids have pain from surgery and recuperation.


----------



## Labelleauboisdormant

Hello everyone!  I am so happy to have found this thread... After a fine needle biopsy in the summer of 2013 I was told I most likely had thyroid cancer.  
There was, however, a significant obstacle to surgery: I had just found out only a few weeks before that I was pregnant.  Not wanting to put the pregnancy at risk, I decided to wait while keeping a close eye on the growths. 

I had a partial thyroidectomy when my DD was 1 month.  While it was most likely cancer, a definite diagnosis could not be confirmed until they operated.  I decided to keep part of my thyroid in case it was not cancer.  The diagnosis was an early stage of papillary thyroid cancer.  I will be getting a second surgery and RAI in the next few months.  Right now I go for regular bloodtest and ultrasounds (every 6 months).

Thank you everyone for sharing your stories and for reading mine!


----------



## macraven

Labelleauboisdormant said:


> Hello everyone!  I am so happy to have found this thread... After a fine needle biopsy in the summer of 2013 I was told I most likely had thyroid cancer.
> There was, however, a significant obstacle to surgery: I had just found out only a few weeks before that I was pregnant.  Not wanting to put the pregnancy at risk, I decided to wait while keeping a close eye on the growths.
> 
> I had a partial thyroidectomy when my DD was 1 month.  While it was most likely cancer, a definite diagnosis could not be confirmed until they operated.  I decided to keep part of my thyroid in case it was not cancer.  The diagnosis was an early stage of papillary thyroid cancer.  I will be getting a second surgery and RAI in the next few months.  Right now I go for regular bloodtest and ultrasounds (every 6 months).
> 
> Thank you everyone for sharing your stories and for reading mine!




_i'm glad you shared with us.
i wish you the best for that future surgery.

hugs and prayers to you.
_


----------



## luvmarypoppins

Labelle - glad you shared your story with us and wishing you all the best with your upcoming surgery.

macraven - how did your surgeon visit go today? I know you were concerned. Sending good thoughts and prayers.

Christine - how is your painting project going? 

We are talking about a May trip but I dont know if this will work out. It would be last minute anyway, so we would pay through the nose for airfare but the room with be free with dh ff miles. Dh is off to the west coast in 2 weeks.


----------



## macraven

my appt is tuesday.
i'll be back to let you know after that.


----------



## luvmarypoppins

macraven - hoping your appt. went well.

Allison - how are you feeling? Hopefully your voice is coming back. 

Christine - my dh was telling me the weather was so nice when he was down there last week. He said he cherry blossoms were not blooming yet. What are you reading? I am reading an amish fiction book I won from Goodreads. Its slow going.


----------



## macraven

one of my sons lives in the DC area and hasn't mentioned the cherry blossom blooming yet to me.
it's one of our yearly typical conversations.

the appt Tues turned out to be a long visit with the surgeon.
he checked me out and said the first surgery was a failure in stinting the ducts.
success only lasted 4 days and the ducts collapsed again.

have to have major surgery to remove the gland and the ducts connected to it.
his first opening isn't until mid May.

so i set up the surgery date and the dates for the drainage tube removal, post op, and suture removal, all on different dates.

the one thing i wonder about is he wants the sutures in the neck to stay in for 3 weeks before removal.
i thought sutures would come out about a week after the surgery.

is that normal for those that have had anytime of neck surgery, 3 weeks of sutures?


----------



## Christine

Hey everyone! 

The cherry blossoms are only buds right now and are expected to be in full bloom on April 9th.  I think the festival is this weekend though--that's how it goes sometimes.

The weather is definitely MUCH improved.

As usual, I'm not reading anything good!  Just abandoned a book about how to organize your house and by more "tidy".  Once the author started talking about putting your hands on your clothing to see if it brings you joy and thank the clothing for serving you well, I just had to give it up.

My painting project is progressing.  I finally settled on Sherwin-Williams Tidewater.  Probably won't start painting until next week.

Now, this is thyroid thread so I guess I should say something about that!!  My body seems to be behaving for now.  Increased my dose back up again and, so far, so good, no hot flashes this time.  

Hope everyone has a Happy Easter!  Don't eat too much candy!


----------



## macraven

hope all has had a wonderful good friday.


----------



## AllisonK

I had my follow-up with my surgeon on Wednesday. My incision is healing well (although I may be having a bit of a reaction from the dissolvable stitches because of my sensitive skin) and my pathology report was clear! I have been feeling so much better in the past few weeks than I have in a long time! I also got the OK to start singing again and my voice is coming back nicely! (My allergies are starting up again, however... But that means spring is finally here!)


----------



## macraven

AllisonK said:


> I had my follow-up with my surgeon on Wednesday. My incision is healing well (although I may be having a bit of a reaction from the dissolvable stitches because of my sensitive skin) and my pathology report was clear! I have been feeling so much better in the past few weeks than I have in a long time! I also got the OK to start singing again and my voice is coming back nicely! (My allergies are starting up again, however... But that means spring is finally here!)


that is wonderful news, clear pathology report!!

good to read you are starting to feel better now, you'll be singing soon.

thanks for letting us all know how you are improving.


----------



## luvmarypoppins

Allison - so happy to hear you got a great path report. Also glad you can sing again! How wonderful!


----------



## squeegee

It's been almost a month since I posted an update here. Time's been flying, and dragging at the same time. LOL. 

PT for my shoulder has been going well - I haven't regained full range of motion yet, but I'm no longer in constant pain, either, so I'm happy about that. Four more weeks of 2x/wk to go. 

I've also begun the "real" preparation for my RAI - April 10th I stopped my tirosint and am now on cytomel 2x/day. I know that I'm quite sensitive to changes in the thyroid meds, and it stinks. I feel a little more spacey than usual, and my migraines are cranking up. Back when I had my thyroid, before all this craziness, I'd get one or two a year. After the first surgery, withdrawal, and radiation, when I was put on the suppression dose, they increased in frequency and I was having one a day for a while. They even did a couple of MRI's to make sure it wasn't a tumor. :/ The migraines leveled off to about one a month after a while, but I've just had two in the past three days, so I'm feeling a bit bummed. Stayed home from work today because of the migraine, just feeling crappy. 

I suppose that's enough whining out of me for now. LOL. All told, every day this side of the grass is a good day. I hope all y'all are happy and doing well.


----------



## macraven

squeegee so glad you returned to update us!

sounds like you are making progress with the shoulder.
very soon you'll have full range of motion back.

hope medically you get better with the thyroid situation.
it has to be miserable with getting migraines.


----------



## luvmarypoppins

squeegee - how are you feeling?? I am assuming you are doing the withdrawl vs. the thyrogen. How is the lid diet going? Did they tell you what your rai dose will be? Sorry too many questions, but I am sure you are ready to get this over and done with.  I hope the pt is helping your shoulder. It helped mine as much as it could. Wishing you all the best. 

macraven - how are you feeling too? I know you will glad to have your surgery done and behind you too. Waiting is hard for sure! Wishing you all the best too.

I am feeling miserable. I was dealing with some gastro issues sat. night. Lets just say its not fun being sick to your stomach with a neck dissection and add to that I now have gotten a sinus infection probably and my throat is bothering me. I have been trying to fight it off since last week  but might go to urgent care this week if it gets worse. I am grumpy when I dont feel good for sure. 

Check in when you can everyone.


----------



## squeegee

luvmarypoppins said:


> squeegee - how are you feeling?? I am assuming you are doing the withdrawl vs. the thyrogen. How is the lid diet going? Did they tell you what your rai dose will be? Sorry too many questions, but I am sure you are ready to get this over and done with.  I hope the pt is helping your shoulder. It helped mine as much as it could. Wishing you all the best.
> 
> macraven - how are you feeling too? I know you will glad to have your surgery done and behind you too. Waiting is hard for sure! Wishing you all the best too.
> 
> I am feeling miserable. I was dealing with some gastro issues sat. night. Lets just say its not fun being sick to your stomach with a neck dissection and add to that I now have gotten a sinus infection probably and my throat is bothering me. I have been trying to fight it off since last week  but might go to urgent care this week if it gets worse. I am grumpy when I dont feel good for sure.
> 
> Check in when you can everyone.



I've started the withdrawal process - am on cytomel until at 10th, when I stop it all. That's also the day I start the LID. It's the day after DD's birthday, so I get to enjoy pizza and cake, at least. Lol. 

PT has been helping immensely. I think I've got two or three weeks to go, and that's gonna be it, though. I can't afford to extend it any further. Fortunately, though, the pain has abated to where I'd call it "livable," even if all improvement ceases.  

Doc said he's expecting another 150 on the RAI, same as las time. I'm hoping the side effects aren't worse this time around. Last time, I had minor salivary pain/swelling, mild nausea, and lost the ability to taste salt for a couple weeks. I suppose I can live with that again, but I have my fingers crossed. 

Sorry to hear you're not feeling well. . I can't imagine puking with a neck dissection. Three months out, and I still wince when I sneeze! I hope you feel better soon.


----------



## macraven

squeegee said:


> I've started the withdrawal process - am on cytomel until at 10th, when I stop it all. That's also the day I start the LID. It's the day after DD's birthday, so I get to enjoy pizza and cake, at least. Lol.
> 
> PT has been helping immensely. I think I've got two or three weeks to go, and that's gonna be it, though. I can't afford to extend it any further. Fortunately, though, the pain has abated to where I'd call it "livable," even if all improvement ceases.
> 
> Doc said he's expecting another 150 on the RAI, same as las time. I'm hoping the side effects aren't worse this time around. Last time, I had minor salivary pain/swelling, mild nausea, and lost the ability to taste salt for a couple weeks. I suppose I can live with that again, but I have my fingers crossed.
> 
> Sorry to hear you're not feeling well. . I can't imagine puking with a neck dissection. Three months out, and I still wince when I sneeze! I hope you feel better soon.


  squeegee, at least you have something delightful to look forward to...
daughters birthday and you get pizza and coke.
can't get better than that !!

i can imagine the struggle you are going through right now in the withdrawal process.
hang in there and you'll see the light at the end of the tunnel real soon.

i'm crossing my fingers, toes and eyes for you that the side effects won't get worse.


----------



## macraven

luvmarypoppins said:


> macraven - how are you feeling too? I know you will glad to have your surgery done and behind you too. Waiting is hard for sure! Wishing you all the best too.
> 
> I am feeling miserable. I was dealing with some gastro issues sat. night. Lets just say its not fun being sick to your stomach with a neck dissection and add to that I now have gotten a sinus infection probably and my throat is bothering me. I have been trying to fight it off since last week  but might go to urgent care this week if it gets worse. I am grumpy when I dont feel good for sure.
> 
> Check in when you can everyone.




i'm checking in great leader and mom to the followers here.......

gastro issues are the worse especially in your case with the neck dissection.
i don't know how you manage it.
you need a big  from all of us!
hope you do get to urgent care this week.
don't wait until you start to get worse, try to see the doc asap.
please feel better real soon!

the stint surgery i had failed and with it my appetite.
i am never one to complain about losing weight, as i really need to, but at this point, it would be nice to do a full meal instead of something here and there.
once i have the surgery in May, i'll heal up and get back to a normal routine.
thank you for the best wishes.


----------



## luvmarypoppins

macraven - yeah I am too much like a mom, lol! I know I commented before that my friend did have the salivary glands both removed and he drinks alot of water to speak.

 I think we all look up to Christine the most! She is the founder of this thread. Christine hmm, since you like books I will say I think of you as sage worthy! Was gonna say Gandolf from Lord of The Rings, but he is a guy. Hmm,need to think of a sweet lady. I am not into Jane Austen, so I just dont know. 

squeegee - What do you like to eat on the lid? I cant imagine having to cook and do withdrawl as I read everyones horror stories dong that here. 
Had all the symptoms after rai that you mentioned except the salt thing. I could taste everything after but not as good as before. It took a couple weeks. 

Yes, puking and coughing is the worst for me because its actually more than the dissection I had since the 2nd surgeon told my husband he chopped the whole inside of my L neck up to save me and I would be in terrible pain the rest of my life. yup, so true, so I dont know exactly whats pulling and stressing in there during my sick times but it does not  feel good at all! 

Well so far we are thinking of a wdw trip May 28-June 2nd I think. I have to confirm with dh and see his schedule. I did see we can get the Swan for most of dh ff miles so that will be good. I also tentatively booked a BOG lunch because we never ate there for lunch and I know dh has been asking for that but I think 11:35 was the only time they had, a little early but I took it.


----------



## squeegee

I think I've blacked out my experience with the LID last time. I know it's no dairy, no eggs, no seafood/derivatives, limited meat. Am thankful I have a DH as attentive as I do - he'll worry about what to feed me.  left to my own devices, I think i'd probably just throw my hands up and eat plain iceberg lettuce for two weeks.


----------



## macraven

ok, so we have two moms here.
christine and LMP


life is always sweeter having you both do a lot here for everyone!


----------



## SingingMom

I hope everyone feels better. :-( it stinks when you feel sick, especially as a wife, mother, chief bottle washer!! 

Been busy getting ready for DD's college graduation. She took on a second minor, so she's been busy with papers and projects as well as the fun senior stuff. She could have glided by this year, but I'm really proud of her that she took in the added academics.  She also won the Theatre Department's Dramaturgy Award this past week!  

Yesterday she and I had a girls day out in Manhattan - brunch at a french restaurant and matinee of Gigi on Broadway.  Great day. I will miss her very much when she starts working at Disney!


----------



## Christine

luvmarypoppins said:


> macraven - yeah I am too much like a mom, lol! I know I commented before that my friend did have the salivary glands both removed and he drinks alot of water to speak.
> 
> I think we all look up to Christine the most! She is the founder of this thread. Christine hmm, since you like books I will say I think of you as sage worthy! Was gonna say Gandolf from Lord of The Rings, but he is a guy. Hmm,need to think of a sweet lady. I am not into Jane Austen, so I just dont know.
> 
> squeegee - What do you like to eat on the lid? I cant imagine having to cook and do withdrawl as I read everyones horror stories dong that here.
> Had all the symptoms after rai that you mentioned except the salt thing. I could taste everything after but not as good as before. It took a couple weeks.
> 
> Yes, puking and coughing is the worst for me because its actually more than the dissection I had since the 2nd surgeon told my husband he chopped the whole inside of my L neck up to save me and I would be in terrible pain the rest of my life. yup, so true, so I dont know exactly whats pulling and stressing in there during my sick times but it does not  feel good at all!
> 
> Well so far we are thinking of a wdw trip May 28-June 2nd I think. I have to confirm with dh and see his schedule. I did see we can get the Swan for most of dh ff miles so that will be good. I also tentatively booked a BOG lunch because we never ate there for lunch and I know dh has been asking for that but I think 11:35 was the only time they had, a little early but I took it.




Oh, I feel like I've been a bad mom lately!!!  I've been so busy at work that I know I neglect this thread!!

LMP--I just haven't read any really good books lately.  I've got a few I'm waiting for that are supposed to be good.  "Being Mortal" is one and I can't wait to get it.

It's been a long time since I had to do the LID.  I remember eating a lot of meat and veggies.   Nothing else.  I think there are better tips out there now.  I did lose 6 lbs though!!

I had 150 mci two separate times.  The first time I had horrible salivary gland problems, but not the second time.  I was told the second time DO NOT do the hard candy/lemon drops.  I ate grapes and things that made my salivary gland express "mildly" and that seemed to help.  Definitely got the nausea again as well as the taste issues.

Hope everyone else is doing well.


----------



## macraven

Christine said:


> Oh, I feel like I've been a bad mom lately!!!  I've been so busy at work that I know I neglect this thread!!
> 
> LMP--I just haven't read any really good books lately.  I've got a few I'm waiting for that are supposed to be good.  "Being Mortal" is one and I can't wait to get it.
> 
> It's been a long time since I had to do the LID.  I remember eating a lot of meat and veggies.   Nothing else.  I think there are better tips out there now.  I did lose 6 lbs though!!
> 
> I had 150 mci two separate times.  The first time I had horrible salivary gland problems, but not the second time.  I was told the second time DO NOT do the hard candy/lemon drops.  I ate grapes and things that made my salivary gland express "mildly" and that seemed to help.  Definitely got the nausea again as well as the taste issues.
> 
> Hope everyone else is doing well.




_you are a good mom!
we all miss you when life gets in the way and we don't hear from you.

my eyes perked up when you said you had horrible salivary gland problems......then i realized it was a side effect from your treatment.
i had the stint surgery last month for mine but it failed on the 4th day the stints were removed.
next month i have the gland surgically removed.

it was a good thing that your salivary gland did not pose a problem the second time you had the mci.
you had enough going for you medically already._


----------



## 1Grumpy9

It has been a while since I have checked in on the thread...I wanted to give everyone an update on the news I just got this morning from my Endo.  I have been dealing with Hypocalcemia since my surgery (they also had to take my parathyroid).  Well, my Endo has been waiting for the injection of the parathyroid hormone to be approved by the FDA.  For the last 5 yrs I have been dealing with having Tums by my side and taking a lot of calcium/vitamin D pills.

This takes me to today...my Endo walks in and says, "I have big news...we have approval."  The injection of Natpara was approved and we are going to start me on this course of treatment.  I had to fill out the paperwork for the medicine and that will be passed along to the insurance company.  This is a daily dose that I would inject into my thigh.  They will have someone come to the house and explain to me what has to be done for the injection and how to prepare the medicine. 

I am excited for this and I hope this helps keep my levels around normal and I don't have the episodes I have now!!!


----------



## SingingMom

1Grumpy9 said:


> It has been a while since I have checked in on the thread...I wanted to give everyone an update on the news I just got this morning from my Endo.  I have been dealing with Hypocalcemia since my surgery (they also had to take my parathyroid).  Well, my Endo has been waiting for the injection of the parathyroid hormone to be approved by the FDA.  For the last 5 yrs I have been dealing with having Tums by my side and taking a lot of calcium/vitamin D pills.
> 
> This takes me to today...my Endo walks in and says, "I have big news...we have approval."  The injection of Natpara was approved and we are going to start me on this course of treatment.  I had to fill out the paperwork for the medicine and that will be passed along to the insurance company.  This is a daily dose that I would inject into my thigh.  They will have someone come to the house and explain to me what has to be done for the injection and how to prepare the medicine.
> 
> I am excited for this and I hope this helps keep my levels around normal and I don't have the episodes I have now!!!




Best of luck with the new drug!  Hope it brings you relief!

I just got bloodwork back - cholesterol needs to come down and there was trace blood on my urine.  Oh joy. Will watch that. Too busy with DD college graduation, nephew's college graduation, trip to Central Europe, and moving DD to Disney that I just do not have time for anything else!  Lol


----------



## mommasita

Hi everyone... I have not checked in since my first post.. I have been extremely down.. I just can't seem to get a handle on it.. Normally I can, just lately nothing is working.

Today I was supposed to go to an *immunology* appointment, But I cancelled. I couldn't get up for 7am, I couldn't do it..
I don't seem to understand the need, and I am a little fed up seeing Doctors to be frank. 
Last week my Rheumy told me I was positive for Hashimoto's as well, and I need a new set of labs this week, to see about an increase in my synthroid.. I know I must need it, my hair just won't stop falling out.. among other thing.
I have been reading about a gluten free diet helping, does anyone have any insight on this?

Among other things, not sure if I mentioned this, I was hospitalized for hemorrhaging, and my biopsy came back positive, my Dr broke his ankle, and I am waiting on his replacement.. UGH.. First I want to take care of my synthroid, because this is just sucking the life out of me.. I am just not myself, and I am taking it out on my family, and I hate myself..

Thank you for listening


----------



## StitchesGr8Fan

Hi everyone. After a year-long battle to get someone to help me, I finally found an endocrinologist willing to try me on levothyroxine. 

My backstory - I was treated for hypothyroidism in my late teens/early twenties. I stopped the medication because I felt good and was a dumb 22 year old who didn't want to have a life-long condition. Since my daughter was born 2 years ago I've felt like crap. It it's more than new-mom exhaustion. I've tried getting lots of sleep, exercise, eating right, vitamins. Nothing has helped. I'm always tired, in pain, can't loose weight no matter how much I exercise and count calories, shedding more hair than usual, constantly sick, the list goes on. 

I've had my TSH tested multiple times and it has ranged from 2.3 to 4.8. That is in the normal range so my regular doctor wouldn't treat me. I went to an endocrinologist last week and he ran a bunch more tests. My TSH was 2.3, so no help there. My creatine kinase was high, which I've read is a side effect of low thyroid. I also get chronic hives, which is another effect of low thyroid. My free T4 is in the normal range when tested too. 

So this endocrinologist agreed to try me on levothyroxine for 3 months to see how I feel. I think he may just be humoring me, but I have had hypothyroidism before and have lots of symptoms again, so in my gut I feel like that is the problem. He tested me for a bunch of other adrenal and hormonal things and those came back perfectly normal. 

Good wishes and stories of people with hypothyroidism but normal TSH and free T4 would be much appreciated! Can't wait to pick up my meds so I can hopefully feel like me again!


----------



## Christine

StitchesGr8Fan said:


> Hi everyone. After a year-long battle to get someone to help me, I finally found an endocrinologist willing to try me on levothyroxine.
> 
> My backstory - I was treated for hypothyroidism in my late teens/early twenties. I stopped the medication because I felt good and was a dumb 22 year old who didn't want to have a life-long condition. Since my daughter was born 2 years ago I've felt like crap. It it's more than new-mom exhaustion. I've tried getting lots of sleep, exercise, eating right, vitamins. Nothing has helped. I'm always tired, in pain, can't loose weight no matter how much I exercise and count calories, shedding more hair than usual, constantly sick, the list goes on.
> 
> I've had my TSH tested multiple times and it has ranged from 2.3 to 4.8. That is in the normal range so my regular doctor wouldn't treat me. I went to an endocrinologist last week and he ran a bunch more tests. My TSH was 2.3, so no help there. My creatine kinase was high, which I've read is a side effect of low thyroid. I also get chronic hives, which is another effect of low thyroid. My free T4 is in the normal range when tested too.
> 
> So this endocrinologist agreed to try me on levothyroxine for 3 months to see how I feel. I think he may just be humoring me, but I have had hypothyroidism before and have lots of symptoms again, so in my gut I feel like that is the problem. He tested me for a bunch of other adrenal and hormonal things and those came back perfectly normal.
> 
> Good wishes and stories of people with hypothyroidism but normal TSH and free T4 would be much appreciated! Can't wait to pick up my meds so I can hopefully feel like me again!




Well, I am not sure if you are going to get those types of stories.  Technically, with a TSH of 2.3 and a normal Free T4, you are not hypothyroid.  Not even subclinically hypothroid.  Some doctors will try the meds if you are on the edge.  So if your TSH was closer to 4.0 and your Free T4 was on the lower end of normal, you might be on to something.  But maybe this will work for you.

I do have to wonder:  have you had other things tested?  I would be looking at your ferritin levels (this is the amount of iron you are storing and can be quite low even if you are not anemic).  You should also be looking at your Vitamin D levels.

The other thing to factor in is what you are eating.  I go up and down with how I eat.  I know that during times when I am eating whatever I want, while it tastes great and I love it, I'm sluggish, achy, headachy, tired, and really out of sorts.  If I cut out much of the processed food, I feel so much better.  I have been eating better now since the end of March and I feel AMAZINGLY great and energetic.  I really should try to stick with it.  It's important to take serious look at all that especially when your thyroid numbers are quite good.


----------



## StitchesGr8Fan

Christine said:


> Well, I am not sure if you are going to get those types of stories.  Technically, with a TSH of 2.3 and a normal Free T4, you are not hypothyroid.  Not even subclinically hypothroid.  Some doctors will try the meds if you are on the edge.  So if your TSH was closer to 4.0 and your Free T4 was on the lower end of normal, you might be on to something.  But maybe this will work for you.
> 
> I do have to wonder:  have you had other things tested?  I would be looking at your ferritin levels (this is the amount of iron you are storing and can be quite low even if you are not anemic).  You should also be looking at your Vitamin D levels.
> 
> The other thing to factor in is what you are eating.  I go up and down with how I eat.  I know that during times when I am eating whatever I want, while it tastes great and I love it, I'm sluggish, achy, headachy, tired, and really out of sorts.  If I cut out much of the processed food, I feel so much better.  I have been eating better now since the end of March and I feel AMAZINGLY great and energetic.  I really should try to stick with it.  It's important to take serious look at all that especially when your thyroid numbers are quite good.


My free T4 is on the low end of the normal range and my TSH varies, but when I was being treated and felt "good" my TSH was between 1.09 and 1.5. 

I've been to an immunologist as well and have been tested for all sorts of deficiencies and other auto-immune issues. Everything comes back normal. And I mean right smack dab in the middle of normal. The only thing besides my TSH and and T4 that aren't right in the middle of the range is my creatine kinase and SED rate. 

I think the tipping point for the doctor in giving me meds is my chronic hives. In over half the people with chronic hives, levothyroxine treats and prevents outbreaks.


----------



## Christine

StitchesGr8Fan said:


> I think the tipping point for the doctor in giving me meds is my chronic hives. In over half the people with chronic hives, levothyroxine treats and prevents outbreaks.



That's very interesting.  I wonder what the cause is for that?  I hope it works for you.  Hopefully you will some some relief in about 2 weeks time.  What dose were you given to start?


----------



## StitchesGr8Fan

Christine said:


> That's very interesting.  I wonder what the cause is for that?  I hope it works for you.  Hopefully you will some some relief in about 2 weeks time.  What dose were you given to start?



25 mcg. It's the same dose I was on originally. Coincidentally, I had no hives outbreaks when I was on levothyroxine before. No hives and maybe I feel better? Could be a win-win!


----------



## StitchesGr8Fan

After doing more digging I found in my test results that my FT4 is barely in the normal range. As strange as it sounds, that makes me feel better, like there is a legit reason to take the levothyroxine. Took my first dose this morning.


----------



## Christine

StitchesGr8Fan said:


> After doing more digging I found in my test results that my FT4 is barely in the normal range. As strange as it sounds, that makes me feel better, like there is a legit reason to take the levothyroxine. Took my first dose this morning.



Good luck with that!  I understand the feeling about the labs.  Just makes you feel like you're not crazy!


----------



## luvmarypoppins

IGrumpy9 - glad to hear you got approved for the new med

Mommasita - you have way too much on your plate again. Hang in there. There is light at the end of the tunnel. Sometimes it just takes a long time to get there. One day at a a time. Anything else is overwhelming to me. You have great strength from all that you have been through already. Hang in there! You can do this!

macraven - thinking of you and hoping your surgery goes well.

StitchesGr8fan -  hope the med dose helps you to feel better

squeegee - Enjoy before the lid. So great your dh will cook fr you. My dh is useless in the kitchen. I made all my own food. I made pot roast, chicken soup, of course salads for lunch, and grilled chicken with basmati rice, birsdeye non sauced steam fresh veg. I was getting lazy and the chicken topped with orange marmalade, closest to chinese I can get, Can you tell I live in NY, lol. Also when I was craving italian I had some no yolk egg noodles with beef and fresh tomatoes and peppers and onions. 
Someone here told me about the popcorn in a brown bag in the microwave and I did that too. Also I had the usalted matzoh with pb and sometimes jelly and bananas on it. Also carrots with the natural peanut butter. I had dh stir that up because its a little oily. You can do this too. Hang in there. 

singing mom - Congrats to you dd. That is an awesome award. 

Christine - I hope you can relax and read a book this week end. 

Well part of my tooth chipped off. I have always had problems post rai. I am feeling better cold wise. I know I got this from ds1. He finally went to he dr. and got an antibiotic.


----------



## squeegee

luvmarypoppins said:


> squeegee - Enjoy before the lid. So great your dh will cook fr you. My dh is useless in the kitchen. I made all my own food. I made pot roast, chicken soup, of course salads for lunch, and grilled chicken with basmati rice, birsdeye non sauced steam fresh veg. I was getting lazy and the chicken topped with orange marmalade, closest to chinese I can get, Can you tell I live in NY, lol. Also when I was craving italian I had some no yolk egg noodles with beef and fresh tomatoes and peppers and onions.
> Someone here told me about the popcorn in a brown bag in the microwave and I did that too. Also I had the usalted matzoh with pb and sometimes jelly and bananas on it. Also carrots with the natural peanut butter. I had dh stir that up because its a little oily. You can do this too. Hang in there.
> .



Yep, I'm very lucky to have my DH. I try to remember that it's not just me going through this - it's my whole family. He's been wonderful through everything. I wish some doctor out there would come up with LID-safe meal replacement shakes or something, though. It would make this so much easier. Lol. Am contemplating getting lots of fruits and having smoothies a lot, too. 

Had my 3 month followup with the surgeon and he is pleased with the progress. I get to wait another six months before I have to see him again. Yay!

Also checked in with my endo to get my FMLA and short-term disability paperwork done, and he said everything is in order, progressing as it should, so that's good. Almost to the end of this mess. 

It may be kindof superficial, but I keep reminding myself that I've got a disney trip waiting for me in December. My spreadsheet keeps me from being bored all day anymore. LOL.


----------



## luvmarypoppins

squeegee - thinking of you and hoping the diet is going as well as can be. I actually liked it at first but in the end I was getting weary. Hang in there.

macraven - is your surgery soon? Wishing you all the best. I know you have been through so much too lately.

singing mom - know you are getting ready for your dd graduation.

I am dising when I should actually be writing minutes from my meeting yesterday and then I need to start some trip planning. My dh hates the heat and then I see its Gay Days, SWW etc. So extra crowds in the parks are not going to make him happy. I know we were actually there once before with the ds many years ago during this time (we usually do 3rd week May). I am going to look at easy wdw for a touring plan reccomm. We have seen it all so its ok but dealing with alot of crowds in the heat is ugh!! Bad enough we deal with pop warner and cheerleaders when its not even hot too. 

I havent even made any adrs save 2 and 1 I cancelled because we had to change the date of the trip. So I need to pin dh down for sure asap. I think we will go the end of May into the lst week end of June so far. 

Next week is crazy my bday, our anniv and ds3 graduating from nursing school. (the next degree). I see alot of celebrating in our future!

Everyone check in when you can.


----------



## macraven

_just a quick drive by to say i had the surgery tuesday morning and home now.
i know many of you have gone through surgeries so you know how i feel.

lousy, achy, miserable and yucky.

my incision was only 5 inches long so i'm glad it wasn't longer.

i'm only out of bed for a short time today but will return later this week.

hope all are doing fine.

hope LMP has a great birthday next week!
and wonderful anniversary and fantastic time at son's graduation.

May is your busy month!_


----------



## squeegee

Glad your surgery went well, and I hope recovery is quick and uneventful. 

I'm struggling more with the diet this time than I remember last time, but then I may have just blocked the memories from the last time around. Lol. 

I'm starving constantly. Constantly. Pain in the stomach, shaky starving. It doesn't seem to matter how much I eat, food only brings the pain down to a tolerable level. On top of that, I feel too groggy to get up to get food. Lol. I had 4 carrots for breakfast because I could grab them straight from the fridge. Lol. 

My aunt has come to stay with me to help out, but she had some appointments of her own today and has been gone all day. She'll be back in about an hour. DH just got home an hour ago, too, right before I started to lose my mind. Lol. 

I'm thankful it's only two weeks. Almost halfway there. I can do anything for two weeks, right?


----------



## macraven

_squeegee, i wish i lived closer to you and in better shape where i could help you.

i know the one time people need lots of help is when they go through something like you are going through.

i know it will be difficult, but you will get through this.
it will all be a past memory 2 weeks from now.

but for the meantime, it is painful for you.._


----------



## squeegee

macraven said:


> _squeegee, i wish i lived closer to you and in better shape where i could help you.
> 
> i know the one time people need lots of help is when they go through something like you are going through.
> 
> i know it will be difficult, but you will get through this.
> it will all be a past memory 2 weeks from now.
> 
> but for the meantime, it is painful for you.._


Thank you for letting me gripe.  I try not to make it a habit. I've felt worse than usual today, but I will get through it. And then when I'm done (but hopefully before I lose my sense of taste), I'm having chicken in butter-lemon-caper sauce over vermicelli, half a cheesecake, and two giant glasses of whole milk!!


----------



## macraven

squeegee said:


> Thank you for letting me gripe.  I try not to make it a habit. I've felt worse than usual today, but I will get through it. And then when I'm done (but hopefully before I lose my sense of taste), I'm having chicken in butter-lemon-caper sauce over vermicelli, half a cheesecake, and two giant glasses of whole milk!!


_your wait will be well worth it !!!


me, i would hold out for ice cream and carrot cake.......

the chicken dinner would come in last on my list.....hahaha_


----------



## macraven

_i have a question for all of you that have gone through neck surgeries.
if you can, please let me know about the swelling you went through and how you handled it.

my incision is 5 inches long. (could be a bit longer haven't mearsured it since he told me 5")

from even to the ear lobe to the middle of the neck/throat.
i stopped the ice packs after 48 hours per doc request.
but the swelling is growing.
i don't have a chin, lol......
i'm swollen out all the way and have to move my shoulders/body in order to see something next to me.
neck too big and can't turn the head now.

did any of you get huge swelling right after surgery?
besides pain meds, and diuretic, what did you do for comfort?
swelling increased in the incision site once the drainage tubes were removed on wednesday.

how long did it take your swelling to start to decrease?

any info is appreciated.
i go for a post check due to swelling on tuesday.
doc said that swelling can be an issue with this surgery.
i'm becoming impatient._


----------



## luvmarypoppins

squeegee - you can gripe to us anytime you want. I feel so bad you are having all those symptoms. Being hungry is enough but the pain and shaking. I never had those but I did get a thyrogen headache and nausea for 2 days. 
Maybe you can keep things in the refrig for grab and go or quick heat up. Like put some peanut butter in the refrig and dip the carrots in them, more protein???
I also made some steel cut oatmeal in the crockpot. I actually found the recipe on the budget board here. I think it lasted a few days but  did make it with apples and cinnamon. But since I hate oatmeal so much, just the cooked kind. I had to add stuff like walnuts,pecans,raisin and maple syrup just to get it down.
I actually only ate bananas for breakfast. I am glad I did not go to MSK cancer center in NYC. They absolutely forbid bananas on the lid. Gheesh!

Maybe keep the popcorn ready in a baggie too? Hang in there! You can do this!!!

Just wondering if they are dead set when you are having the rai, like what if your tsh is already at the right number before they say you are getting it. I think that did happen to someone who posted here before. I cant remember who.  think they asked for a blood test ahead of time since they felt horrible etc. from the withdrawl. 

Maybe you can speak to someone on call at the dr.  and see what advice they can give you. Hugs.


----------



## luvmarypoppins

macraven - I am so sorry you are going through all this post op stuff too. 

I did have alot of swelling but I had the drain kept in for like almost 3 weeks I think. 

I would call your dr. and speak to someone and see what they say today or else its going to be a long, long week end for you and you should not be suffering like that. It would not be beyond me to send them a picture of the swelling. (The nurse actually put me on the phone with the surgeon rre surgery so he could listen to me breathe once, lol. He could tell the tumor was crushing my trachea). This is your health and body we are talking about here!!

So no ice or heat now?????

For comfort it was like 4 pillows in bed and then staying upright in the recliner. Also trying not to move my neck much since that just made it worse.

How about swallowing? Are softer foods better? 

Sending you hugs and hope your symptoms are manageable and you can get some relief. Hang in there!


----------



## squeegee

luvmarypoppins said:


> macraven - I am so sorry you are going through all this post op stuff too.
> 
> I did have alot of swelling but I had the drain kept in for like almost 3 weeks I think.
> 
> I would call your dr. and speak to someone and see what they say today or else its going to be a long, long week end for you and you should not be suffering like that. It would not be beyond me to send them a picture of the swelling. (The nurse actually put me on the phone with the surgeon rre surgery so he could listen to me breathe once, lol. He could tell the tumor was crushing my trachea). This is your health and body we are talking about here!!
> 
> So no ice or heat now?????
> 
> For comfort it was like 4 pillows in bed and then staying upright in the recliner. Also trying not to move my neck much since that just made it worse.
> 
> How about swallowing? Are softer foods better?
> 
> Sending you hugs and hope your symptoms are manageable and you can get some relief. Hang in there!



I did not have a whole lot of swelling in my neck, but more around the collarbone area. Turning was difficult, but they didn't recommend ice or heat until several weeks had passed. They did suggest gentle massage, to encourage fluid drainage and prevent scar tissue adhesion. They also said I could wrap with slight compression. Never did, though. Don't let it get too far out of hand. Better safe than sorry so soon after a surgery, especially.


----------



## squeegee

luvmarypoppins said:


> squeegee - you can gripe to us anytime you want. I feel so bad you are having all those symptoms. Being hungry is enough but the pain and shaking. I never had those but I did get a thyrogen headache and nausea for 2 days.
> Maybe you can keep things in the refrig for grab and go or quick heat up. Like put some peanut butter in the refrig and dip the carrots in them, more protein???
> I also made some steel cut oatmeal in the crockpot. I actually found the recipe on the budget board here. I think it lasted a few days but  did make it with apples and cinnamon. But since I hate oatmeal so much, just the cooked kind. I had to add stuff like walnuts,pecans,raisin and maple syrup just to get it down.
> I actually only ate bananas for breakfast. I am glad I did not go to MSK cancer center in NYC. They absolutely forbid bananas on the lid. Gheesh!
> 
> Maybe keep the popcorn ready in a baggie too? Hang in there! You can do this!!!
> 
> Just wondering if they are dead set when you are having the rai, like what if your tsh is already at the right number before they say you are getting it. I think that did happen to someone who posted here before. I cant remember who.  think they asked for a blood test ahead of time since they felt horrible etc. from the withdrawl.
> 
> Maybe you can speak to someone on call at the dr.  and see what advice they can give you. Hugs.



It seems like my stomach is growling no matter how much I eat. My aunt is here to fix things for me, and all I want is food, food, food. I know it will pass, but I'm going to be a zeppelin by the time it's done. LOL. At least it's healthier foods, veggies, oats, fruits - she makes me spinach salads with homemade balsamic Vinaigrette and fresh mushrooms every day. 

They've got me scheduled for bloodwork to check the TSH next Wednesday, and that will have results overnight. Then it'll take a day to get insurance preauth, then it's weekend, so Monday it'll be. I'm sure my numbers are up there. They want something in the 30's IIRC, and last time I was in the 130's by the end.


----------



## macraven

squeegee said:


> It seems like my stomach is growling no matter how much I eat. My aunt is here to fix things for me, and all I want is food, food, food. I know it will pass, but I'm going to be a zeppelin by the time it's done. LOL. At least it's healthier foods, veggies, oats, fruits - she makes me spinach salads with homemade balsamic Vinaigrette and fresh mushrooms every day.
> 
> They've got me scheduled for bloodwork to check the TSH next Wednesday, and that will have results overnight. Then it'll take a day to get insurance preauth, then it's weekend, so Monday it'll be. I'm sure my numbers are up there. They want something in the 30's IIRC, and last time I was in the 130's by the end.



_happy to read your aunt is there with you now and can take care of your food needs.
nothing worse than having to do your food yourself 

hope your new tsh labs have good numbers!

keep us posted on how your are doing.

_


----------



## macraven

luvmarypoppins said:


> macraven - I am so sorry you are going through all this post op stuff too.
> 
> I did have alot of swelling but I had the drain kept in for like almost 3 weeks I think.
> 
> I would call your dr. and speak to someone and see what they say today or else its going to be a long, long week end for you and you should not be suffering like that. It would not be beyond me to send them a picture of the swelling. (The nurse actually put me on the phone with the surgeon rre surgery so he could listen to me breathe once, lol. He could tell the tumor was crushing my trachea). This is your health and body we are talking about here!!
> 
> So no ice or heat now?????
> 
> For comfort it was like 4 pillows in bed and then staying upright in the recliner. Also trying not to move my neck much since that just made it worse.
> 
> How about swallowing? Are softer foods better?
> 
> Sending you hugs and hope your symptoms are manageable and you can get some relief. Hang in there!



_thank you LMP.
i have to sleep sitting in the recliner with pillows, can't lay flat.
if i have to use the bed, i have 5 pillows so i'm propped up.
did talk with the surgeon yesterday and he said he expects excessive swelling.
said besides the gland and all the ducts, he removed tissue and something else.
the something else went over my head.......
told me to be on pedialyte sp, liquids, pudding, yogurt etc anything i can swallow but to avoid chewing for 2 more days.

since only 30 ml drained out in a 24 hour period, he said to have the drain removed.
a nurse came to my house to take care of that and then gauged the hole.

surgeon said i need bed rest and no more movement for today.
he is on call for me this weekend so if the swelling doesn't slow down, i will be making a trip to see him.
he did tell me to be in his office tuesday for a look see due to swelling.
i didn't think of sending him a pic of the neck.
that is a brilliant idea you stated.
thank you again for your thoughts.

i know when the swelling decreases i will feel better.
but, i'm inpatient and want to feel better now......_


----------



## Christine

Good morning all!  Squeegee and macraven--my heart  goes out to you.  Here's hoping for things to be on the UPSWING starting next week.  

LMP - Happy Birthday and, as usual, I am green with envy over your trips!  I haven't been to WDW since 2012 and I am dying to go back but it seems that it's not happening soon.  Believe it or not, my DOG is stopping me now.  She's 15 years old and, while her arthritis is starting to really kick her butt, she's pretty healthy.  But, there's no way I can leave her and I don't really have anyone to leave her with.  She's very anxious when I'm out of her sight and I think she'd be a real burden to stay with someone else.  My son is home from college now. He's a great kid but he brings a lot of stress for me.  He got sick during finals, came home and tested positive for mono.  Then, on Wednesday evening, he apparently had an abscess on his tonsil, which burst.  Never seen anything like it.  He's now feeling 100% better, thank God.  But despite studying his butt of this semester, his grades were lackluster so he's made the decision to drop out of his engineering major.  That's a lot of credits he is wasting but there's not point in slogging through this.  It's kind of depressing and everything is in a state of flux right now.  I'm just too old for all this.  When I think about all the kid drama I sailed through when I the kids were younger, I realize how *weak* I am now.  I just don't handle this well anymore.  I think I got spoiled during my partial empty-nest phase.  Oh well, enough about me.  Bottom line is, for this thread, my thyroid levels seems to be good and on an even keel after 2 years of trouble.  I am back up to my higher dose and tolerating it well.  Over the last few weeks, I have a few episodes of heart palps so I would guess that my TSH is on the much lower end of things.  

Everyone, have a good weekend and to those here who are going through some rough times right now, it WILL pass and when it does you will really appreciate feeling good!


----------



## macraven

_LMP_


----------



## mommasita

Thank you luv,.. I finally went for my new bloodwork this week.. I see the Dr again the last week of this month.... I never did see the Immunoligist.. I told them I see enough Dr's. They said they understood, and if I feel I want to see them to call back... I am just overwhelmed with specialists right now...Happy Birthday!

macraven, I hope you heal quickly.. gently hugs.

Hi to everyone else..


----------



## 1Grumpy9

I am still waiting to start the new Natpara hormone.  I have the approvals from the insurance and I am waiting for the medicine to be delivered and my crash course on mixing and injecting...LOL!!  I would like to have this done before next week as I am getting ready to start going on vacations.  I leave for Nashville on June 9th.  I don't want to be 12 hrs from home and just starting a new medicine a week before I leave.  This way I am close to home if something would happen at first.


----------



## SingingMom

Happy Birthday LMP!  

DD21 graduated from college Saturday! So proud of her!    Now we have to plan for our ABD Central Europe trip next month, then get her ready to start her WDW internship in August!


----------



## squeegee

Macraven - how goes it with the swelling?

Just got my lab work from yesterday. TSH is 31, so we're good to go. It really feels like I ought to be over 100 or so by now, though. LOL. 

And, my doctor apparently just realized Monday is a holiday, and he and his staff are off. 

So, it's been moved to Tuesday admission/Thursday release, which is fine, too, just have to shift around my transportation. 

Progress, progress.


----------



## luvmarypoppins

1Grumpy9 - I hope you will be able to get the med soon. I agree with you. I wouldnt want to start it right before a vacation either. I went to Nashville once but it was ages ago. I hope you have a wonderful trip. 

singing mom  - I hope you have a wonderful abd trip. What countries are you visiting?

squeegee - I am sorry you have to wait another day. But glad your tsh is getting up there. That is always good for sure. Hang in there! You can do this!! The end is in sight!!

macraven - I hope the swelling is manageable and that you are healing

Christine - I am so glad that they found your mil. That must have been scary. My poor aunt is dealing with this with my uncle. But all he does is ask the same things over constantly and he just stays in the house and doesnt know where the rooms are. I dont know how she manages to keep an eye on him either since she is legally blind. I think that the alarms you mentioned would be good. 

Well I am almost done planning the trip. Dh has lost his annual pass but I know its linked to the magic band I have from our Dec. trip so I hope that works. If not then off to the tech in the parks etc. 

This is the shortest I have planned a trip ever. We will stay at the Swan for 5 nights for free, gotta love dh ff miles except for the resort fee and then talked dh into the beach club garden view room for  2 nights with an ap discount. 

I havent done all the dining or the fp stuff but most of it. I just dont want the fp stuff to be messed up if dh has to get a new ap etc. 

We are eating at Trattoria Al Forno, Cape May Buffet because dh must have a crab coma, Be Our Guest for lunch, Rose and Crown and Liberty Tree Tavern. The rest I am still working on. With 2 weeks I have to take what is there. We might do Coral Reef, Shulas and Citricos. 

And added to the crazy, dh just informed me that he is flying back from Calif. the day before we leave and then the day after we get back he is going to Beijing and Shanghai. So its gonna be the laundry dash too. 

Tomm. at ds3 graduation he just informed me that the nursing dean of the college said to call ds up and get him to do a speech and present an award to some professor,???? The dean said  I saw this boy at the comm. college graduation and he will be good (Ds filmed a video interview about nursing. Its just so strange as ds I dont think ever met this professor. He did all his classes on line. So funny!!!


----------



## luvmarypoppins

squeegee - Just wanted to wish you all the best tomm. and I hope the side effects from the rai are bearable. Prayers for you!!


----------



## squeegee

luvmarypoppins said:


> squeegee - Just wanted to wish you all the best tomm. and I hope the side effects from the rai are bearable. Prayers for you!!


Thank you! 
I'm just really glad that this is almost over, and praying for some goooood uptake on the WB scan they'll do afterwards.


----------



## macraven

_1grumpy, did you mention Nashville?
i went there for a civil war tour end of April.
lovely city and enjoyed everything there.

squeegee, i went back and read your post on the back page.
yes, tomorrow is tuesday and i know where you will be tomorrow

have you in my prayers.


everything will go fine.
i'm thinking positive for you and hope it won't be too hard on you.


do let us know how you are doing whenever you feel like being on the computer.

we all care very much about each other here._


----------



## luvmarypoppins

squeegee - I hope you are resting as much as possible as the rai does its job. Thinking of you and praying for you.

Well sadly our Disney trip has been cancelled.

I was having pain in my R leg since last week and last night it was so swollen and I had ds3 look at it and on sun. I could hardly walk part of the day.

Well they did a vascular doppler and found out that I have a medium occluded blood clot from my R leg mid thigh to my knee. So now I am on xeralto and I have to call and make an appt for the vascular surgeon to  see me asap.

squeegee- I saw your detailed spreadsheet for your trip. Mine was on a piece of notebook paper and I couldnt believe how quickly we cancelled it. The only issues are probably I wont get my moneys worth out of my ap, oh well such is life and then we are stuck with southwest airline credits to next trip and we got dh ff miles put back from the swan room and they waived the fee since he is a premium member and I cancelled the room and dining online. 

Oh well, disney will always be there but my health is more important. Dh leaves for Calif. tomm. Perfect timing, lol.


----------



## macraven

_LMP, i'm so sorry this medical condition has happened to you!
i have been through that, it happened to me 15 years ago.
had surgery 3 days after the diagnose and healed up in time.

stay off your feet if you can and keep your leg elevated.
you are very lucky to have a RN son that help you with this.

and sorry to read your trip is cancelled.
don't be sad.
there will always be another trip to the motherland.

squeegee, i am assuming you are resting but do know i am thinking about you.

prayers for both of our friends here._


----------



## mommasita

Luv, I am so sorry, but in a good way thank goodness that happened at home, and like Macraven said , glad you have your son.. They run in my family, so I have to be so cautious.. My father and sister have had 5 or 6 each.. Please be careful, and do as suggested... ..Your trip can be rescheduled, your heath is paramount.. I know you know that

Today, by Synthroid was bumped up FINALLY to 75mg.. My Doctor said that once my dosage is found my hair will stop falling out.. I hope so...... 

I have to go this week for an U/S of my hand from  my fall, he is sure I tore some ligaments.. I can't make a fist, or hold/grasp anything.. He thinks I need hand surgery.. I had such a sore shoulder, so he popped it back in.. I have EDS< and it was popped out, and this time I was unaware.. UGH..

Well, the weather is warming up, and hoping I can swim soon..

Hugs everyone..


----------



## macraven

_momma, super that you now get to increase your synthroid!

i think you will feel the difference of the increased dose to be very beneficial.
i take synthroid and it has been the best med for me.
i started it 26 years ago and have it upped and decreased over the years.
once i was lowered from 2. mg down to 150 mg to 125 level, it was a perfect match for me.

my brother feel on nye evening and used his hand to brace himself when he fell.
it was the hand or his face, so he made the right choice.
within 24 hours he was in the er with a hand swollen twice its size.

long story short, didn't see a doc after he was released from the ER (who diagnosed him with sprained wrist, broken finger).
ended up 9 days later with a surgeon doing new xrays.
broken wrist and fingers, surgery and a plate with screws in the arm now.
he still is in PT 3 times a week and still does not have movement more than his thumb.
their goal is to get him to a point to grasp a pencil, make a fist, etc.

he is almost 6 months out from when this injury began and is looking at a full year of PT.


if you are still swollen and can't make a fist or grasp anything, see a surgeon ASAP...
i'm sure you are frustrated about limited use of the hand.
not easy doing everything with only one hand._


----------



## mommasita

Thank you..
I am on this as of tomorrow..


----------



## Christine

LMP--so sorry to hear about your leg.  Do they know what causes this or does it just happen?  That's just a bummer about the trip.  

Not much going on here; just enjoying the warmer weather.  Makes me feel so much better.


----------



## 1Grumpy9

macraven said:


> _1grumpy, did you mention Nashville?
> i went there for a civil war tour end of April.
> lovely city and enjoyed everything there._



Yes I did...My mom and I go every June to CMA MusicFest.  We have made that trip (driving) from PA to TN every year for the past 18 yrs.  We love going and love the city.  It is also nice that I get to see my good friend that lives in Chattanooga during the trip.  We meet up for dinner one night at one of our favorite restaurants around midpoint for both of us.  We have found some great restaurants while there that we don't have here in PA or are a local restaurant that we like to go to while we are there.

An update on this Natpara saga...I got my shipment yesterday (because the specialty pharmacy was screwing around with full filling my order) and I have to wait until June 2nd for the nurse to come show me how to administer it.  Then within 7 days I have to go back to get labs drawn to see where we are at with the injections.  After 14 days the nurse comes back to follow up on how I am doing with the injections.  Once I get started on it, I will post an update.


----------



## luvmarypoppins

mommasita - I hope you get answers from your ct scan. I know EDS is a cousin to Marfans syndrome. My sister passed away from that. I still think my boys, the oldest 2 have more eds symptoms. The one had a dislocated knee several times and the one had knee surgery too. The surgeon saw he never saw tissue like that before,spongy. The one ds breaks his bones very easily,but I think some of that is long term steroid use for his asthma. Do you have any symptoms like that since I dont know much about eds compared to marfans. 
Hope your new synthroid dose makes you feel better

macraven - how are you doing post surgery. Has the swelling decreased. When do you see the surgeon?

Igrumpy - I am sure you will be glad to start your med. Hope you get good results. 

squeegee- I am sure you will be happy to go home tomm. Hoping you are enjoying some regular food as best you can.

I am getting bored keeping my leg up. I have an appt. with the vascular surgeon next thurs. The er told me it was suppose to be 3-5 days, yeah right. Then they want me to see someone in internal medicine. I told them there is no way I am going back to the one dr. I had. She might be a John Hopkins grad but she has a terrible personality so they gave me someone else. They want me to see someone before next thurs. Even ds agreed it was too long to wait . So instead of disney next week, its doctors and doctors and now dh called me and some problems happened that he will need to straighten out at work next week, so I guess its all for the best. sigh. and more sigh. 

I tried walking to the mailbox and felt a sharp pain in my leg.


----------



## mommasita

luvmarypoppins said:


> mommasita - I hope you get answers from your ct scan. I know EDS is a cousin to Marfans syndrome. My sister passed away from that. I still think my boys, the oldest 2 have more eds symptoms. The one had a dislocated knee several times and the one had knee surgery too. The surgeon saw he never saw tissue like that before,spongy. The one ds breaks his bones very easily,but I think some of that is long term steroid use for his asthma. Do you have any symptoms like that since I dont know much about eds compared to marfans.
> Hope your new synthroid dose makes you feel better
> 
> macraven - how are you doing post surgery. Has the swelling decreased. When do you see the surgeon?
> 
> Igrumpy - I am sure you will be glad to start your med. Hope you get good results.
> 
> squeegee- I am sure you will be happy to go home tomm. Hoping you are enjoying some regular food as best you can.
> 
> I am getting bored keeping my leg up. I have an appt. with the vascular surgeon next thurs. The er told me it was suppose to be 3-5 days, yeah right. Then they want me to see someone in internal medicine. I told them there is no way I am going back to the one dr. I had. She might be a John Hopkins grad but she has a terrible personality so they gave me someone else. They want me to see someone before next thurs. Even ds agreed it was too long to wait . So instead of disney next week, its doctors and doctors and now dh called me and some problems happened that he will need to straighten out at work next week, so I guess its all for the best. sigh. and more sigh.
> 
> I tried walking to the mailbox and felt a sharp pain in my leg.




Oh my, did they tell you no walking at all?  With my Dad and my Sis it was NONE.. Actually they were both hospitalized each and every time, and it was zero movement. Please be careful...


I tear everything... In the past 2 years I tore my rotator cuffs (both sides, my achilles.. I don't seem to be overly flexible, but have very weak joints..  I do sublax, not totally dislocate..
This is my own fault.. I fell in December, and you know, thought it was ok..  Went for Xrays, no fracture, and since I have a few auto immune, just thought I was healing slowly, etc... Now I realize it has to be tendons... Today I did the Xrays, and this week will do the U/S privately... Good system here, but strange, as I go private, it is hard to explain..


----------



## squeegee

luvmarypoppins said:


> mommasita - I hope you get answers from your ct scan. I know EDS is a cousin to Marfans syndrome. My sister passed away from that. I still think my boys, the oldest 2 have more eds symptoms. The one had a dislocated knee several times and the one had knee surgery too. The surgeon saw he never saw tissue like that before,spongy. The one ds breaks his bones very easily,but I think some of that is long term steroid use for his asthma. Do you have any symptoms like that since I dont know much about eds compared to marfans.
> Hope your new synthroid dose makes you feel better
> 
> macraven - how are you doing post surgery. Has the swelling decreased. When do you see the surgeon?
> 
> Igrumpy - I am sure you will be glad to start your med. Hope you get good results.
> 
> squeegee- I am sure you will be happy to go home tomm. Hoping you are enjoying some regular food as best you can.
> 
> I am getting bored keeping my leg up. I have an appt. with the vascular surgeon next thurs. The er told me it was suppose to be 3-5 days, yeah right. Then they want me to see someone in internal medicine. I told them there is no way I am going back to the one dr. I had. She might be a John Hopkins grad but she has a terrible personality so they gave me someone else. They want me to see someone before next thurs. Even ds agreed it was too long to wait . So instead of disney next week, its doctors and doctors and now dh called me and some problems happened that he will need to straighten out at work next week, so I guess its all for the best. sigh. and more sigh.
> 
> I tried walking to the mailbox and felt a sharp pain in my leg.



I just got home today, gonna do 5-7 more days in home isolation. So far, so good, but already cant taste most salt. Aside from the food, the hospital stay wasnt too bad. WBS scheduled monday.

If you dont mind me asking - where are you going for your vascular consut? I do vascular ultrasound for one of the largest and best vascular surgery groups in texas and would be happy to offer any not-a-doctor help that i can.


----------



## squeegee

Just had the whole- body scan, and for once, It's all good news. Uptake where expected, in amounts expected. Bloodwork good. And the Dr. says I am "absolutely" clear to rejoin general population, with Little monster. In an excess of caution, I will still sleep alone for a while, and will keep a bathroom to myself for a few more days, but no other restrictions. Am so relieved! I don't have to go back for six more months! 

LMP - any news on the vascular front?


----------



## mommasita

squeegee said:


> Just had the whole- body scan, and for once, It's all good news. Uptake where expected, in amounts expected. Bloodwork good. And the Dr. says I am "absolutely" clear to rejoin general population, with Little monster. In an excess of caution, I will still sleep alone for a while, and will keep a bathroom to myself for a few more days, but no other restrictions. Am so relieved! I don't have to go back for six more months!
> 
> LMP - any news on the vascular front?




FABULOUS NEWS!


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## macraven

_WOOT   ....... !!!_

_that is great news squeegee_


----------



## luvmarypoppins

squeegee - that is very good news. I am so happy for you. Praying for you. 

macraven - how is your recovery going?

christine - I amreading alot since I am suppose to take it easy. Just won 2 more books from goodreads.I ts amazing how much you can read in the emergency room,lol!

Well I went back to the emergency room on sun. Ds3 and dh took me. Ds3 left after a while. I wanted him there to answer any questions from the previous er visit. I freaked out because I was peeing blood. Its better but a side effect  of the med and my side hurt too. So they did a ct scan of the lungs and stomach because that was hurting too to make sure the clot did not travel. I had iv problems and it looks like someone got into a fight with me with the black and blues, lol. 

Oh and today I was suppose to go to the internist. They cancelled it on me!! And now I am suppose to go tomm. I looked up the drs. name on the website and its listed nowhere. We shall see what happens tomm. I am glad I was in the er yest as that would have been just more days without someone following up with me.

squeegee- I go to a univ.teaching hosp. I looked up the vascular surgeon dr. they are giving me, you cant really pick one unless another dr. specifically asks for one for you or if they are new etc. So my guy speaks chinese and mandarin and guess what...He is an Aggie!!! Hmm, Aggies arent bad right. We shall see. His scope is very impressive. He is very into artery grafts etc. 

What would they even do with me, just monitor me with the blood thinner, put a stent in? I am concerned about it breaking off and going to my lung. Its pretty big. Mid thigh to knee. My r lower leg still hurts but some blood supply is getting down there they said.


----------



## squeegee

luvmarypoppins said:


> squeegee - that is very good news. I am so happy for you. Praying for you.
> 
> macraven - how is your recovery going?
> 
> christine - I amreading alot since I am suppose to take it easy. Just won 2 more books from goodreads.I ts amazing how much you can read in the emergency room,lol!
> 
> Well I went back to the emergency room on sun. Ds3 and dh took me. Ds3 left after a while. I wanted him there to answer any questions from the previous er visit. I freaked out because I was peeing blood. Its better but a side effect  of the med and my side hurt too. So they did a ct scan of the lungs and stomach because that was hurting too to make sure the clot did not travel. I had iv problems and it looks like someone got into a fight with me with the black and blues, lol.
> 
> Oh and today I was suppose to go to the internist. They cancelled it on me!! And now I am suppose to go tomm. I looked up the drs. name on the website and its listed nowhere. We shall see what happens tomm. I am glad I was in the er yest as that would have been just more days without someone following up with me.
> 
> squeegee- I go to a univ.teaching hosp. I looked up the vascular surgeon dr. they are giving me, you cant really pick one unless another dr. specifically asks for one for you or if they are new etc. So my guy speaks chinese and mandarin and guess what...He is an Aggie!!! Hmm, Aggies arent bad right. We shall see. His scope is very impressive. He is very into artery grafts etc.
> 
> What would they even do with me, just monitor me with the blood thinner, put a stent in? I am concerned about it breaking off and going to my lung. Its pretty big. Mid thigh to knee. My r lower leg still hurts but some blood supply is getting down there they said.



I'm not a doctor, and none of this may apply, but I can provide some general info. 

Arteries and veins are different parts of the vascular system. Arteries take the blood out to the limb, veins are the return. Usually a "clot" is referring to thrombus in a vein. Arteries can block off, too, but it's usually something they would call atherosclerosis or an emboli or ischemic event. 

There are two basic parts of the venous system - a "superficial" and a "deep" system. The superficial system feeds into the deep system, which returns to the lungs. 

I think what you've said is they found a DVT - deep vein thrombosis. 

Treatment options can depend on the age of the clot (chronic vs acute), the extent of it, whether it's completely occluding the vein or not,  location of it (proximal or distal), and other health problems/coagulation issues. 

They can lyse it with catheter-injected chemicals directly, which is the usual treatment for acute dvt, as I understand it. From what I know, this only works on "fresh" clot. They can put filters in the inferior vena cava (the big "trunk" vein) to trap any clots that break off and prevent them traveling to the lungs. They can do oral drug treatment/thinners, usually on subacute/chronic clot. Stenting is usually reserved for recurrent clot, or clot that has caused more severe damage to the vein wall. Vein bypass surgeries are pretty rare, though not unheard of, whereas arterial bypass surgeries are fairly common. There may be other treatments that I'm not aware of, of course. 

Superficial venous thrombus usually doesn't get much beyond monitoring to make sure it doesn't extend into the deep system, and compression/elevation to manage swelling. Of course, they usually run blood work to check for problems that cause your blood to clot abnormally, as well, but they can't always find a specific cause. 

If you're saying mid-thigh to knee, that sounds like the femoral vein. If it was determined to be acute, I'm very surprised they let you leave without immediate treatment. If it was not acute, it would look different on the ultrasound and some physicians might be okay with a little delay in treatment. I totally understand being afraid of something breaking off and going to your lungs. Not to frighten you, but pay close attention to your body and take a "better safe than sorry" approach with this. If you have chest pain at all, or if pain/swelling worsens, get thee to the ER. Keep us posted.


----------



## macraven

_LMP



everything that squeegee said made sense to me.

when mine happened, ended up with the vein stripping.  happened quickly, at the doc and then to the hospital then surgery next day.
not my choice of treatment.
my recovery was icky.


i would think that since they released you from the er and not admitted you, your meds will likely help dissolve the clot.
are you wearing the pass the thigh compression hose?_


----------



## squeegee

macraven said:


> _LMP
> 
> 
> 
> everything that squeegee said made sense to me.
> 
> when mine happened, ended up with the vein stripping.  happened quickly, at the doc and then to the hospital then surgery next day.
> not my choice of treatment.
> my recovery was icky.
> 
> 
> i would think that since they released you from the er and not admitted you, your meds will likely help dissolve the clot.
> are you wearing the pass the thigh compression hose?_



Vein stripping is very rarely done anymore, at least at our practice, and really only on superficial system veins, from what I understand. 

It's a lot of information to absorb, and there are so many variables. I'm glad to hear they're getting you to a vascular specialist, LMP, though, instead of a cardiologist. They should stick to hearts. LOL.


----------



## macraven

_so many surgeries are done different now.
my leg surgery has to have been at least 18 years ago.

now i am working up the ladder for other parts of the body .......lol
i swear, anything past the neck for surgery will be the highest spot performed on me for life........_


----------



## jesusluvsu2005

I recently had a checkup and the dr felt a nodule in my neck where my thyroid is so he ordered an ultrasound. Turns out I have two nodules on one side (one close to my esophagus) and then one on the other. I have to get blood work done but in the past my thyroid levels have been fine. I think they have only pulled TSH level in the past. Have any of y'all had the nodules and what happened if so? Thanks!
Amanda


----------



## squeegee

jesusluvsu2005 said:


> I recently had a checkup and the dr felt a nodule in my neck where my thyroid is so he ordered an ultrasound. Turns out I have two nodules on one side (one close to my esophagus) and then one on the other. I have to get blood work done but in the past my thyroid levels have been fine. I think they have only pulled TSH level in the past. Have any of y'all had the nodules and what happened if so? Thanks!
> Amanda



Thyroid nodules are extremely common, and generally benign. Don't google yourself into worrying. 

If they're less than 1cm, very likely you'll just have ultrasounds and bloodwork done every now and again to watch them. If they're large, or have other problematic characteristics on the ultrasound, they may do a fine needle biopsy. It sounds worse than it is. 

Do make sure you follow up with your doctor.


----------



## luvmarypoppins

Amanda - it is good they' re following you closely. I wouldnt be too concerned either. Its good that your blood tests are normal and they are doing ultrasounds. Keep following up with your dr. 

Well back from the internist. Well actually I found out why I couldnt find the dr. listed on the website. It was a resident supervised by the attending physician of the resident program.WTH!!! No one told me this was the dr. I would be getting. I was a little pissed about that. I would love to see what actual dr. they are using to bill my ins. company. But I did like the dr. anyway. She was really sweet. Have to go get blood and urine test at the lab next week and see them the end of the month again. Oh and add to that she wants me to see the urologist, so I will be doing that the end of the month. They say its not right to have this side effect and it may indicate some underlying issue. umm I didnt want to argue with her but it did say that is one of the side effects and I notice when I didnt take the pill twice, once I was in the er and I think last night I forgot, then I dont have this issue. So I will talk to the vascular surgeon on thurs. She seemed to not think seeing the vascular surgeon was Not a priority, um,  dont know about that wither. Its a vascular problem and he is a vascular specialist, sigh. This is what I have to deal with there.

I left there very anxious and upset that its just more drs. and more testing. So thurs. we will see and hear things from the surgeons point of view. Always something. 

squeegee - how is your taste issues?

macraven - how is the recovery going?

Christine - how is your mil? Has you ds made any decisions. Ds2 who was in the engineering program had such a rough time too. Alot was him but he changed his ways. His high school didnt prepare him well either and he is the kind of person never to ask for help. He had to repeat one class over 3 times with special permission, but he graduated and stuck it out and now has a good enough job. His program was not one specialty. He calls it the dumbed down program. Its a little of all the stuff of engineering electrical, mechanical, civil etc, just not one concentration. Wishing your ds all the best. I am sure its rough on him as well as you too. We are dealing with ds27 still looking for a job. Its been 8 months already, gheesh!


----------



## Christine

luvmarypoppins said:


> Christine - how is your mil? Has you ds made any decisions. Ds2 who was in the engineering program had such a rough time too. Alot was him but he changed his ways. His high school didnt prepare him well either and he is the kind of person never to ask for help. He had to repeat one class over 3 times with special permission, but he graduated and stuck it out and now has a good enough job. His program was not one specialty. He calls it the dumbed down program. Its a little of all the stuff of engineering electrical, mechanical, civil etc, just not one concentration. Wishing your ds all the best. I am sure its rough on him as well as you too. We are dealing with ds27 still looking for a job. Its been 8 months already, gheesh!



My MIL is hanging in there.  Doesn't seem to be doing too well mentally, but physically she's as fit as fiddle! I think my FIL is looking into getting some home assistance, just so he can get a break.  We shall see how that goes.

My son is in the middle of his first computer class.  So far, so good.  He's pretty sure he's going to definitely switch out of engineering.  He's had it, I guess.  He may try for the Computer Information Systems major.  The school he currently attends is ranked either #2 or #6 in the nation for the major (depends which "best of" list you are reading) so I think if he can make it, he will have some good job opportunities in this area.

He is currently in a "general engineering" degree program which is all his college offers.  The engineering program is new at his college (7 years old) so they haven't specialized yet, but it is pretty much mechanical engineering.  I don't think he'd mind repeating courses but his GPA is getting to a point that if he gets one more bad grade, he won't be in good standing.  Not a thing you want to happen.  I think much of that happened because he took barely any general education courses which would have balanced out the tough engineering courses.  Oh well, we'll see how it goes.  It's all so unsettling to me.

Hope everyone is doing well.


----------



## squeegee

Taste issues are about the same. If I remember correctly, it lasted about a month last time, so I'm expecting about the same this time. I'm just anxiously awaiting the day when food tastes good again, and I can treat myself to something special. 

Keep pushing to see that vascular specialist. Once you've had a DVT, you're more likely to have them again, and it's something that should be followed closely. Damage to the veins over the long term can really make for a lot of misery if it's not followed properly - and not many general docs/internists know how to follow them properly, from what I've seen. And you definitely want your ultrasounds done by a technician who does these OFTEN. Most ultrasound techs are fine for an initial diagnosis of a DVT, but most of them don't routinely do complete evaluations of the venous system, including reflux studies and evaluation of perforator veins (the connection between deep and superficial system), like a specialist would. Look for an RVT (registered vascular technician) or someone who's been working with a vascular specialist for many years.


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## JacknSally

Hi, everyone!

I normally post to the theme parks board, but I was scrolling through the home page and noticed this thread. I'm subbing in as I've got an appointment next Wednesday with my doctor to have tests run. I'm convinced I have hypothyroidism - I've been doing a lot of research on it and so many of the symptoms hit close to home. So happy to stumble across this thread tonight!


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## macraven

_and we all here are delighted to join us.

do google the labs that are suggested the doctor should have in order to get thorough results.

if he omits doing one of the labs, ask him why.

reason i say this is the first internist i used, failed to include the TSH test.
took me another doctor before it was in my charts for required testing so i could have a correct and accurate diagnosis _


----------



## JacknSally

macraven said:


> _and we all here are delighted to join us.
> 
> do google the labs that are suggested the doctor should have in order to get thorough results.
> 
> if he omits doing one of the labs, ask him why.
> 
> reason i say this is the first internist i used, failed to include the TSH test.
> took me another doctor before it was in my charts for required testing so i could have a correct and accurate diagnosis _




I read that I need to have them do the TSH, the Free T3, and the Free T4... Is there anything else I need to make sure he does? I'm just seeing my general practitioner for now - someone told me he might not do anything other than send me to an endocrinologist... I hope not! I just want to get a handle on things sooner rather than later if something is off. But from my reading, even if they do the tests, the range is so wide that your results can come back as "normal" even if there's something wrong, and the doctor won't prescribe you anything because your tests were fine... Has anyone experienced that firsthand?


----------



## squeegee

JacknSally said:


> I read that I need to have them do the TSH, the Free T3, and the Free T4... Is there anything else I need to make sure he does? I'm just seeing my general practitioner for now - someone told me he might not do anything other than send me to an endocrinologist... I hope not! I just want to get a handle on things sooner rather than later if something is off. But from my reading, even if they do the tests, the range is so wide that your results can come back as "normal" even if there's something wrong, and the doctor won't prescribe you anything because your tests were fine... Has anyone experienced that firsthand?



For many years, I was on the low end of normal, and doctors pooh-pooh'd the idea of treating it, though my hair thinned drastically, and my weight was steadily increasing, along with a host of other little hypothyroid symptoms, including cold intolerance, depression, and fatigue. I was only about 17 when these symptoms started, and they seemed to think it was all psychosomatic or that I was exaggerating about the bald spots, I guess. Some attributed it to stress, as I had just started college, left home, first job, etc...

Only about 10 years later did I find a doctor who immediately suggested a low dose of synthroid, which stopped the hair loss and weight gain (though did not reverse it - losing the weight took a LOT of attention to diet and exercise, and my hair has never grown back thickly). My quality of life improved substantially after a few months of treatment. 

My understanding is that more and more doctors are aware of the fact that the ranges are too broad, and more doctors are becoming open to treating "low normal" symptomatic patients. You know your body better than they can, as an individual. You should find a doctor willing to work *with* you to feel better, not one who dismisses you out of hand.


----------



## JacknSally

squeegee said:


> For many years, I was on the low end of normal, and doctors pooh-pooh'd the idea of treating it, though my hair thinned drastically, and my weight was steadily increasing, along with a host of other little hypothyroid symptoms, including cold intolerance, depression, and fatigue. I was only about 17 when these symptoms started, and they seemed to think it was all psychosomatic or that I was exaggerating about the bald spots, I guess. Some attributed it to stress, as I had just started college, left home, first job, etc...
> 
> Only about 10 years later did I find a doctor who immediately suggested a low dose of synthroid, which stopped the hair loss and weight gain (though did not reverse it - losing the weight took a LOT of attention to diet and exercise, and my hair has never grown back thickly). My quality of life improved substantially after a few months of treatment.
> 
> My understanding is that more and more doctors are aware of the fact that the ranges are too broad, and more doctors are becoming open to treating "low normal" symptomatic patients. You know your body better than they can, as an individual. You should find a doctor willing to work *with* you to feel better, not one who dismisses you out of hand.




Thank you for this! The more I read about the symptoms that, individually may not mean much, together indicate low thyroid, the more I realize that I've had this for a while. The hair loss was the kicker. For a few years now, I've lost quite a bit of hair when I wash it - not coming out in clumps, but a noticeable amount, and definitely enough to make me wonder what was going on. I always had really, really thick hair and I was really proud of it, so this concerned me. I've dyed my hair several colors over the years and thought maybe that had something to do with it, so I backed off. I tried switching shampoos and conditioners, no sulfates, deep conditioning, only washing my hair once a week, coconut oil, eggs, and a billion other "Pinterest tricks". But a couple of weeks ago, I decided I wanted to see what my hair growth was over the course of a month, as I'm trying to grow it out. I had my fiancee take a picture of my hair from the back so I could track it, and that's when I noticed that the hair on the back of my head, just where my natural part ends, has thinned QUITE a bit. I told my fiance and he thought I was being silly - who starts balding at 26? So I started researching what might cause it, and found several lists of thyroid symptoms... Kid you not, I printed out a list of 300 symptoms of low thyroid, and I deal with 82 of them every day. But they're all so "minor" and "ordinary" that I just always thought they were normal and just part of my life (most of them, like the massive anxiety and weight gain/difficulty losing weight, I just attributed to stress).  I certainly didn't think they were all connected.


----------



## squeegee

JacknSally said:


> Thank you for this! The more I read about the symptoms that, individually may not mean much, together indicate low thyroid, the more I realize that I've had this for a while. The hair loss was the kicker. For a few years now, I've lost quite a bit of hair when I wash it - not coming out in clumps, but a noticeable amount, and definitely enough to make me wonder what was going on. I always had really, really thick hair and I was really proud of it, so this concerned me. I've dyed my hair several colors over the years and thought maybe that had something to do with it, so I backed off. I tried switching shampoos and conditioners, no sulfates, deep conditioning, only washing my hair once a week, coconut oil, eggs, and a billion other "Pinterest tricks". But a couple of weeks ago, I decided I wanted to see what my hair growth was over the course of a month, as I'm trying to grow it out. I had my fiancee take a picture of my hair from the back so I could track it, and that's when I noticed that the hair on the back of my head, just where my natural part ends, has thinned QUITE a bit. I told my fiance and he thought I was being silly - who starts balding at 26? So I started researching what might cause it, and found several lists of thyroid symptoms... Kid you not, I printed out a list of 300 symptoms of low thyroid, and I deal with 82 of them every day. But they're all so "minor" and "ordinary" that I just always thought they were normal and just part of my life (most of them, like the massive anxiety and weight gain/difficulty losing weight, I just attributed to stress).  I certainly didn't think they were all connected.



I've come to think of the thyroid as a "mini brain," or the "regulator" of darn near everything. 

In 2012, I was diagnosed with thyroid cancer and ended up having a total-thyroidectomy. I went from taking that low dose of thyroid hormone to needing a large dose, higher than a "healthy" person would need, to suppress any further growth of cancer. So, there are symptoms from the high dose now. LOL. It's just amazing how much of the body's functions are influenced by the thyroid.


----------



## Christine

JackNSally--I wish you the best in your search for answers to your symptoms.  Hopefully the GP you are seeing will do the right things.  I noticed that you didn't seem thrilled about a possible referral to an endocrinologist.  Let me say that, while the wait might be long and some of them don't have the best bedside manner, they are the ones that are "in the know" about the ranges in thyroid lab results and when to prescribe medications with sub-clinical hypothyroidism.  They will know the most about the different brands and how you might react to each one as well as the "right" tests to run and, if you do have hypothyroidism, whether or not it is run-of-the-mill hypothyroidism or if it's autoimmune.  All important stuff, that a regular GP isn't in tuned too.

That said, for many years, I was treated by an Internal Medicine doctor who had a "special interest" in thyroid cancer because he, himself, had thyroid cancer.  And he did an excellent job in managing my care.  However, when he retired I moved my care over to an endocrinologist.  You might have better luck with an internal medicine specialist who focuses on the internal organs versus a GP who most often sees sore throats, ear infections, viral illnesses, etc.


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## JacknSally

Christine said:


> JackNSally--I wish you the best in your search for answers to your symptoms.  Hopefully the GP you are seeing will do the right things.  I noticed that you didn't seem thrilled about a possible referral to an endocrinologist.  Let me say that, while the wait might be long and some of them don't have the best bedside manner, they are the ones that are "in the know" about the ranges in thyroid lab results and when to prescribe medications with sub-clinical hypothyroidism.  They will know the most about the different brands and how you might react to each one as well as the "right" tests to run and, if you do have hypothyroidism, whether or not it is run-of-the-mill hypothyroidism or if it's autoimmune.  All important stuff, that a regular GP isn't in tuned too.
> 
> That said, for many years, I was treated by an Internal Medicine doctor who had a "special interest" in thyroid cancer because he, himself, had thyroid cancer.  And he did an excellent job in managing my care.  However, when he retired I moved my care over to an endocrinologist.  You might have better luck with an internal medicine specialist who focuses on the internal organs versus a GP who most often sees sore throats, ear infections, viral illnesses, etc.



Thank you for your well wishes! And trust me, I have no real aversion to seeing an endocrinologist, or anyone else who might take me seriously and be willing to help me if the GP isn't. It's more a logistic frustration - I've been to see the GP once already in the past few weeks but due to an insurance snafu they wouldn't see me, then the next time they could get me in was 3 weeks away (next week), so that's the 2nd day I've had to try to leave work early for the same appointment, so to see another doctor it's a 3rd day of trying to leave early, it's another co-pay, etc. Minor issues, all-in-all. I also just want to know what's going on and get started on treating whatever it is ASAP. But I'm happy to do what needs to be done to find out what's going on (or not going on). If there are any questions anyone can think of for me to make sure I ask my GP, they are welcome! I'm going into this fairly blind, with just my list of symptoms by my side. I'm the kind of person who only goes to a doctor if there are visible broken bones or excessive blood, so I figured I'd start with my family GP and go from there.


----------



## macraven

_it's always frustrating until you find a doctor that will listen to you and help you find a way to work with medicine that will help you the best.

i used my internist for years.
when it got to the point back in late 2013, i finally switched to an endocrinologist.
best decision i ever made.
the endo doctor took more of my symptons and issues as a lead to help me even more.
it was through this doctor that i found out my vitamin D levels was a contributing factor to my other auto immune diseases.


i have never felt as good today since i added different medications to my thyroid related issues.

endo docs are hard to get appointments with in my area.
i'm talking about getting a good endo, not just one that has you do a few labs and then start you on meds....

it took me 5 months to get an appointment with my current endo.

now i know why.
this doc is the best...

the best wishes to you JacknSally in finding the medical person that will listen to you and work with you until you know what you are facing medically with your thyroid disorder._


----------



## 1Grumpy9

Here is a little update on my new medicine...Natpara.  I got the medicine in the mail the other day and my nurse came over to the house to show me how to use it the first time.  I have been taking it for 3 days now and I don't really see any difference.  I had to get bloodwork done within the first 7 days.  I had that done this afternoon and I will wait for my results from my endo.  I leave for vacation on Monday evening, so I wanted to know before leaving town.  The one thing I have to remember is that I need to take the shot at the same time every day.

I thought it was going to be harder to give myself an injection, but it is really easy.  I don't know why I was so afraid at first.


----------



## luvmarypoppins

JackNSally -welcome and I hope you can get some answers from your testing

IGrumpy - have a wonderful vacation and I hope the med helps you. I dont know if I would be coordinated enough to give myself a shot. I did change my stomach bandage when the hole got smaller. But it was still hard bending to try and do it correctly. 

mommasita - how are you feeling??? 

squeegee - are you feeling anymore like your normal self yet?? I really didnt have too much of taste issues for all that long, just at the beginning or for another week. 

macraven - how are your feeling post op??

Well I went to the vascular surgeon. Saw the np. At first we got to see the lpn who took my vitals and we were talking about how dh and I both had surgeons there and we had her too. She was funny talking about old times. Pretty weird we have to do that in a medical sense.
The surgeons np said she was going over my doppler study with the surgeon. Told me I need to drink alot of water, get a compression stocking. and this could take up to 3-6 months to resolve. Told me I need a dr. to manage the meds not the resident and told her my issues with the  side effects. She said goodbye etc. I said, what the dr. is not even going to see me??? She said, well I guess I could get him if you really want to speak to him. OMG!!! Here we go again. I am sure they are billing my ins. co. top dollar and I wasnt even going to see the surgeon??? He saw me a few minutes. Said what are you doing here??? You dont need a surgeon. WTH??? He said, oh I see the er referred you, yes. He said they will do a followup visit and doppler in 3 months. At last the doppler will be right there in the office so that is good and then I just see the dr. when its done. 
He also said there are 5% of people who have this blood/urine issue and he feels I am one of those people. He doesnt think I have bladder cancer like the other dr. said, PTL!!!  And now of course all the symptoms are gone. 
So I got the labs done today and now will call tomm. and probably see some dr. they give me again, but its ok. I need the med over the week end as it was only a 3 week supply with no refills. Always something. 
The compression stocking is really helping. I have the one that only goes up to the knee OMG I cant imagine having the thigh one. Ds3 put it on me today. I could never do this myself. Just too hard. I think I did manage to get it off myself last night, but getting it on is another whole story. They only had 1 pair on my size and it was $50. Wowsa. At least I only have to wear it on one leg. 
My dh is off to Beijing and Shanghai today. Its gonna be a long 9 days., Oh well, last week it was 2 weeks.


----------



## SingingMom

I wasn't getting updates so I seem to have missed a lot!!  Hope all are feeling better!!  
LMP - sorry you had to cancel your trip, but the last thing you need in WDW is a blood clot!!  Hope it heals soon!

We leave for our ABD Central Europe adventure next week!  I am all packed, DD & DH need to get started!


----------



## squeegee

luvmarypoppins said:


> JackNSally -welcome and I hope you can get some answers from your testing
> 
> IGrumpy - have a wonderful vacation and I hope the med helps you. I dont know if I would be coordinated enough to give myself a shot. I did change my stomach bandage when the hole got smaller. But it was still hard bending to try and do it correctly.
> 
> mommasita - how are you feeling???
> 
> squeegee - are you feeling anymore like your normal self yet?? I really didnt have too much of taste issues for all that long, just at the beginning or for another week.
> 
> macraven - how are your feeling post op??
> 
> Well I went to the vascular surgeon. Saw the np. At first we got to see the lpn who took my vitals and we were talking about how dh and I both had surgeons there and we had her too. She was funny talking about old times. Pretty weird we have to do that in a medical sense.
> The surgeons np said she was going over my doppler study with the surgeon. Told me I need to drink alot of water, get a compression stocking. and this could take up to 3-6 months to resolve. Told me I need a dr. to manage the meds not the resident and told her my issues with the  side effects. She said goodbye etc. I said, what the dr. is not even going to see me??? She said, well I guess I could get him if you really want to speak to him. OMG!!! Here we go again. I am sure they are billing my ins. co. top dollar and I wasnt even going to see the surgeon??? He saw me a few minutes. Said what are you doing here??? You dont need a surgeon. WTH??? He said, oh I see the er referred you, yes. He said they will do a followup visit and doppler in 3 months. At last the doppler will be right there in the office so that is good and then I just see the dr. when its done.
> He also said there are 5% of people who have this blood/urine issue and he feels I am one of those people. He doesnt think I have bladder cancer like the other dr. said, PTL!!!  And now of course all the symptoms are gone.
> So I got the labs done today and now will call tomm. and probably see some dr. they give me again, but its ok. I need the med over the week end as it was only a 3 week supply with no refills. Always something.
> The compression stocking is really helping. I have the one that only goes up to the knee OMG I cant imagine having the thigh one. Ds3 put it on me today. I could never do this myself. Just too hard. I think I did manage to get it off myself last night, but getting it on is another whole story. They only had 1 pair on my size and it was $50. Wowsa. At least I only have to wear it on one leg.
> My dh is off to Beijing and Shanghai today. Its gonna be a long 9 days., Oh well, last week it was 2 weeks.



I'm feeling a lot closer to human since I can take my meds. Have been back at work for two days now, and am tired and sore but otherwise doing okay. They're going easy on me. 

Am glad you at least got to speak with the surgeon - it's very odd that they would think it's okay for your first visit to be just the NP or even a PA. In our clinic, we do have a very highly competent, experienced PA, but the first visit is almost with the Dr, and then they alternate. 

The price for the prescription compression hose is about the same as ours, not totally out of line with the norm, but still pricey, yep. I bought one pair myself, since I'm on my feet all day and want to prevent vein problems, but have since gone to non-prescription strength ones for alternating days. They are very difficult to get on and off, yep, but the results are worth the effort. Vein problems, unattended, can get reeeeeaalllyy nasty over time. 

I'm also glad to hear that your vascular doctor will have his own tech do your ultrasound in his office in three months.  I'm a big proponent of the specialist sonographers for this sort of thing, since learning how to do this stuff and seeing for myself how easy it is to miss things if you don't do hundreds of these studies.


----------



## JacknSally

Just coming to check in... And to say thank you for all the good wishes so far! Just left the dr. Man I am not a fan of having my blood drawn AT. ALL. They're running a full work up today and I should have the results in the morning. Full thyroid panel (including tsh, t4, t3u) and a couple of other tests with letter names. He said these tests will cover about 75% of the possibilities, and if the tests come back fine, he recommends me having an exam done for PCOS... Really hoping it's a thyroid issue and we can go ahead and get a handle on things.


----------



## macraven

_JacknSally, i'm crossing my fingers and saying my prayers that it is  not pcos for you.
if you turn out having the thyroid diagnosis, you can work with that with medications.

hope your results come back quickly so you don't have time to fret about it...

_


----------



## SingingMom

JacknSally - best of luck.  I will say, with thyroid issues, you will be amazed how used to having blood drawn you will get!  ;-)


----------



## macraven

SingingMom said:


> JacknSally - best of luck.  I will say, with thyroid issues, you will be amazed how used to having blood drawn you will get!  ;-)





_well, i wouldn't go as far as saying that......lol
i have a needle phobia and have to take valium prior to going to have my blood drawn.....

my endo totally understands and only has my draws done annually..._


----------



## SingingMom

macraven said:


> _well, i wouldn't go as far as saying that......lol
> i have a needle phobia and have to take valium prior to going to have my blood drawn.....
> 
> my endo totally understands and only has my draws done annually..._


Ha!  
I used to be very nervous having blood drawn, but after my thyroidectomy and having blood drawn every few hours while in the hospital, I got over that!!


----------



## JacknSally

Sigh. So I just got off the phone with my doctor. All of my test results came back in the normal range (and I asked him yesterday about getting a "normal" test reading but actually having a thyroid issue - he said it really doesn't happen that much. Don't know if I believe him or not! Haha) so now it's a PCOS test. If that comes back normal, doc said my symptoms are probably just stress related. Not super comforting or helpful! Thank you all for being ears, though. You don't know how helpful you've been! I have the worlds worst anxiety and tend to jump to the worst possible scenario always, so you've all helped keep me somewhat sane, and I truly appreciate it!


----------



## luvmarypoppins

JacknSally - glad the test results were good but sorry you dont have a concrete answer to your issues. Hoping the next tests are good too.

macraven - I can understand your fear of needles. Mine is of the operating room itself and the mask. They let me hold the mask so that helps. 

singing mom - have a great trip!! 

Well I saved a $30 copay and talked to some dr. on the phone. I am sure it was a resident. He didnt even identify himself but he sounded younger than my ds. 
He said my latest blood and urine tests were great so they are going to lower my dose of the blood thinner  med and I only have to take it once a day. 
So that will start when this is done soon. 

Ds1 put on my compression stocking today. He did great, sorry to say even better than Mr. Nurse ds3 did. lol. And speaking of nurses, ds3 is having an interview next week at the univ teaching hosp. yippee!!! He applied for about 4 5 positions so he doesnt know what its for maybe medical or cardio thoracic but its the night shift. He doesnt care after dealing with his lousy manager and the conditions where he works now. Like having the mri machine catch on fire and being yelled at for his patients not getting their testing??? Why wonder the hospital where he works now has the worst reputation around here. 

Dh and I have been e mailing back and forth. That helps.


----------



## macraven

_JacknSally, i wish you a healthy life!

and i hope you don't have PCOS.....

stay and chat with us anytime you can.

we are a friendly bunch here and can always share what we know about things._


----------



## 1Grumpy9

Week 3 of my new Parathyroid hormone treatment and I haven't had any spells of low calcium, but it isn't bringing up my numbers.  My endo has upped the dosage amount from 50 mcg to 75 mcg.  I am hoping that that will be what I needed.


----------



## luvmarypoppins

IGrumpy - I am sure it a guessing game right now to get the right med dose, but I am hoping that soon things will be great for you and the new dosage will help your numbers and you feel better too. Wishing you all the best. Hang in there. Hope your trip was good too. 

Well I went for my follow up yest. Nothing new but it just took forever. They said once the med is done with its 3 month course and after I go to the vascular surgeon they will decide if I need 3 more months of the blood thinner,not them I should say but the vascular surgeon. Of course they are telling me all the horrible side effects. And this one dr, kept telling me how much he loves my endo and that she is the best there, lol I told him I love her too.

The one dr. I saw yest. all he kept saying is that he cant believe how big my blood clot is, gheesh, thanks. Nothing like posititive stuff to make you feel better, lol. Everyone always keeps mentioning to not fall down or get in a car accidents which could equal brain hemorrhage, sudden death etc. gosh. I hate when they scare you like that but I guess that have to  cover themselves etc. 

Dh is leaving for Calif. again today and I have a meeting later, so I wont see him to say goodbye, oh well. Ds3 is waiting for some more of his background check to come through. Apparently they check every place you worked in the last 7 years and he has worked at least 7 places. An independent company does it and he had to call them and send them every pay stub from where he works now because ds refused to sign one paper as they said they would say what place (the new hosp. ) is checking about him, so they said this would be acceptable. He is afraid they wills aay something in retaliation and he could possibly loose the offer etc. 

squeegee, macraven and mommasita - how are you all feeling?

Christine - doing any summer reading? Right now I am reading a romance mystery. Its ok but I havent been good about reading alot lately.


----------



## macraven

1Grumpy9 said:


> Week 3 of my new Parathyroid hormone treatment and I haven't had any spells of low calcium, but it isn't bringing up my numbers.  My endo has upped the dosage amount from 50 mcg to 75 mcg.  I am hoping that that will be what I needed.


 _on the present treatment so far!

give it a few weeks since your mcg has been raised and your endo will reevaluate the situation 

wishing you the best success._


----------



## macraven

_MLP, wow, you just can't catch a break on the blood clot..
have you on my prayer list that it will all improve before the next time you go back for the check up!

don't dare think of DS3 having an issue with the background check, he will come through it all fine.

some days i'm great and some days i should have stayed in bed._
_if improvement doesn't come soon, i have to do PT._
_muscles in my neck and under the tongue are still knotted._

_not an issue of eating but restricted in movement with head and tongue._
_it's more of an annoyance for me but i'm sure it will take time to loosen up._
_thanks for asking._


----------



## mommasita

Luv, I also hope the next appt goes better..
I am sure your son's check will go fine.. They are experts at that.

Well, I am on week 4 of back to work.. First time in 6 YEARS.... I am not online much, it is 5 weeks of training, and by the time I get home and eat, I am just about in bed.. My youngest left for her Europe trip last night, dealing with those emotions.

I need to get my schedule, as I am behind in my bloodwork, I honestly never realized how hard it would be going back to work, but it must be done, and after the initial training it should be easier.. It has great perks, and hoping it all works out..

Hope everyone is doing ok.


----------



## squeegee

luvmarypoppins said:


> IGrumpy - I am sure it a guessing game right now to get the right med dose, but I am hoping that soon things will be great for you and the new dosage will help your numbers and you feel better too. Wishing you all the best. Hang in there. Hope your trip was good too.
> 
> Well I went for my follow up yest. Nothing new but it just took forever. They said once the med is done with its 3 month course and after I go to the vascular surgeon they will decide if I need 3 more months of the blood thinner,not them I should say but the vascular surgeon. Of course they are telling me all the horrible side effects. And this one dr, kept telling me how much he loves my endo and that she is the best there, lol I told him I love her too.
> 
> The one dr. I saw yest. all he kept saying is that he cant believe how big my blood clot is, gheesh, thanks. Nothing like posititive stuff to make you feel better, lol. Everyone always keeps mentioning to not fall down or get in a car accidents which could equal brain hemorrhage, sudden death etc. gosh. I hate when they scare you like that but I guess that have to  cover themselves etc.
> 
> Dh is leaving for Calif. again today and I have a meeting later, so I wont see him to say goodbye, oh well. Ds3 is waiting for some more of his background check to come through. Apparently they check every place you worked in the last 7 years and he has worked at least 7 places. An independent company does it and he had to call them and send them every pay stub from where he works now because ds refused to sign one paper as they said they would say what place (the new hosp. ) is checking about him, so they said this would be acceptable. He is afraid they wills aay something in retaliation and he could possibly loose the offer etc.
> 
> squeegee, macraven and mommasita - how are you all feeling?
> 
> Christine - doing any summer reading? Right now I am reading a romance mystery. Its ok but I havent been good about reading alot lately.



I've seen some fairly extensive clotting before, and it can definitely be a scary thing to go through. It's a good thing that they've found it and that you're being monitored for it. Did they ever determine a cause? Problems with clotting factors in your blood? Trauma to the vein? Recent travel/long periods of immobility? My understanding is that they never truly "disappear," but they do recanalize/reopen, and become "harder" and more firmly affixed to the walls, which makes them less of a risk for embolization. 

Myself, I'm feeling somewhat better. Back to work, and on new meds for anxiety/depression, which seem to actually be helping this time around. My tongue has finally stopped burning, and I think my sense of taste is almost back to normal. Am just so happy I don't have to see the doctor for six whole months for another ultrasound.


----------



## 1Grumpy9

luvmarypoppins said:


> IGrumpy - I am sure it a guessing game right now to get the right med dose, but I am hoping that soon things will be great for you and the new dosage will help your numbers and you feel better too. Wishing you all the best. Hang in there. Hope your trip was good too.



Funny story...I am to inject this medicine into my thigh and alternate which leg that gets injected...well, last week I was going for a new spot on my left thigh and apparently hit a vein...now I have this bruise on my leg added to the bruise I have on the other leg from my trip (from trying to break apart zip tied chairs)...I look like someone is beating me up, but in all reality it is me...LOL!!!

The trip was great...but HOT!!!  We only had one afternoon of rain while we were there, but it didn't spoil any of our fun.  I have some great pictures, but getting through almost 9000 pictures is taking a while...LOL!!!


----------



## luvmarypoppins

Christine - saw the news and just wanted to say that my thoughts are with you. SO sorry you had to go through this all again. Hope you can have a restful and relaxing week end. 

I am taking a break from my vbs prep. My hands hurt from cutting out so much stuff. I always have a new appreciation for teachers after I do this. 

Yest. ds3 talked me into going to see Inside Out with him.  It was his day off. Yes he is a disney nut like me, hmm, guess that is what happens when they grow up Disney, lol. It was a cute movie. The concept I think would be way over the kids heads to understand and we both really enjoyed the Lava short at the beginning. I am sure its based on the Polynesian and the Lava pool. 

Dh comes home tomm. I only have one new bruise on my arm so far so that is good. I also found out its not good to wash out the stocking at night because it doesnt dry all the way and when you try to put on a semi damp compression stocking it does not go on well, lesson learned.


----------



## Christine

LMP--thanks for thinking of me.  Glad it was nothing but we didn't know that and were ordered into our offices with the doors locked, lights off.  We had to be evacuated by SWAT team, hands in the air, lots of guns and some of the officers standing/crouched on top of cubicles.  FBI interview and held for several hours.  I think I need a new job!


----------



## macraven

Christine said:


> LMP--thanks for thinking of me.  Glad it was nothing but we didn't know that and were ordered into our offices with the doors locked, lights off.  We had to be evacuated by SWAT team, hands in the air, lots of guns and some of the officers standing/crouched on top of cubicles.  FBI interview and held for several hours.  I think I need a new job!



_when i read this, i went back to see what i missed on you talking about your ordeal.
didn't find anything but i'm sure from what i read here, it had to be a very upsetting situation you went through...

glad you are okay._


----------



## Christine

macraven--

I work at the Washington Navy Yard and back in 2013 we had the mass shooting.  We are back in the same building, newly renovated, and today and employee heard loud noises that sounded like gunshots and arguing so placed a call to 911.  It was treated as an active shooter situation with all the bells and whistles.  It was very scary for those of us that were present during the first shooting as we all have a little PTSD I think.


----------



## macraven

_what a frightening event to live through!!



hope you never have to go through a situation like that again in your life._


----------



## AllisonK

So I'm about 13 weeks post surgery and just got my levothyroxine dosage increased today from 100 mcg to 150 mcg. I got my lab results this morning and my TSH was 31.9. It's never been this high even when I still had a thyroid! It was always in the "normal" range. Granted I've been a bit tired the past few weeks but I've been busy and I thought that had something to do with it? I still feel ten times better than I did before surgery, though. Anyway I called my endocrinologist this morning and they called me right back to tell me my levels were "very off" and my prescription was waiting for me at the pharmacy. I guess this is pretty normal to change dosages, but it still feels a little sudden.


----------



## macraven

_hope the new dosage will make an improvement for you!_


----------



## tomatecerise

I had follicular thyroid cancer 4 years ago, no Synthroid for My fist operation it was pure Hell.  i was so weak at this Time!  But now i am on My 5th year and cross My fingers...

My mass was so big Then i had difficulties to breathe and swallow.  It was like the pipes under the sink, My orl show me.  My first opération, 7 Hours.  My second 3.  No bed in adult section for My recovery, i was in pediatric section with giraffes and elephants on wall lol!

6 months after My second operation i had Iodine 131 200mg


----------



## macraven

tomatecerise said:


> I had follicular thyroid cancer 4 years ago, no Synthroid for My fist operation it was pure Hell.  i was so weak at this Time!  But now i am on My 5th year and cross My fingers...
> 
> My mass was so big Then i had difficulties to breathe and swallow.  It was like the pipes under the sink, My orl show me.  My first opération, 7 Hours.  My second 3.  No bed in adult section for My recovery, i was in pediatric section with giraffes and elephants on wall lol!
> 
> 6 months after My second operation i had Iodine 131 200mg


_hope all will continue to be fine for you.
in your 5th year you are good and wish you a forever of staying that way!
_


----------



## luvmarypoppins

Interesting reading today. I hope I get the link right. I am not good at this stuff. huffingtonpost.com/danielle-nicosia/cancerversary_b_775888.html?ncid=txtlnkusaolp000592


----------



## luvmarypoppins

Well when I clicked on the link its not the original article. might be somewhere else but she says its her 3 year cancerversary today and she also has so much other stuff too. She is a fighter. Never has had an undetectable test. She is active on thyca and other places and hates when people call it the good cancer. I am happy that thy ca is getting some press.

tomatecerise - glad you are doing well now.  I had symptoms like that before surgery too. My tumor was crushing my trachea. 

And in other news. My poor aunt broke her hip. She is not my blood relative but my moms best friend. She live in another state and it would be too hard for me to travel right now. My heart is so sad. I did talk to her on the phone. She is legally blind and also takes care of her dh who has alzheimers. 
Its ds3 last day at the hosp. today. He is still waiting on the background check for he new hosp. and they told him his magazine cover from the comm. college has been made into a poster that was given to all the high schools out here. lol. We should ask for one of those.


----------



## luvmarypoppins

Where is everyone? Hope everyone is doing ok and check in when you can.

What was  one of my pop up ads but none other than Sophia Vergara advertising Synthroid. lol. 

I am exhausted. Its day 3 of teaching and I am so thankful that I have 4 adult helpers at times plus the two teenagers. We have a class of 20 kids and 2 of them are autistic and sometimes they are a handful. One has trouble focusing and the other one just constantly interrupts with questions and if you dont answer him the way he wants you to or expects what the answer is he wont stop asking or talking etc. We love all the kids but none of us are actually real teachers so we are trying to do what is best for everyone. But they really are sweet kids, just so many of them. God bless real teachers. I always have a heightened respect for them after I do this for a week. 

Oh and in other news my dh has decided to take ds1 and ds3 to Hawaii next week. He said his boss said he has to use some of his vacation days. Right now there is not a dog leash big enough to get dh out of the dog house he is in. I did tell him what the honey do list around the house is, but I am not holding my breath on any of it getting done. I told him since he has to use so much vacation time then just pencil me in for some scans, blood tests and drs. appts. too. lol.  Yup, nothing like spending quality time together, lol.


----------



## squeegee

luvmarypoppins said:


> Where is everyone? Hope everyone is doing ok and check in when you can.
> 
> What was  one of my pop up ads but none other than Sophia Vergara advertising Synthroid. lol.
> 
> I am exhausted. Its day 3 of teaching and I am so thankful that I have 4 adult helpers at times plus the two teenagers. We have a class of 20 kids and 2 of them are autistic and sometimes they are a handful. One has trouble focusing and the other one just constantly interrupts with questions and if you dont answer him the way he wants you to or expects what the answer is he wont stop asking or talking etc. We love all the kids but none of us are actually real teachers so we are trying to do what is best for everyone. But they really are sweet kids, just so many of them. God bless real teachers. I always have a heightened respect for them after I do this for a week.
> 
> Oh and in other news my dh has decided to take ds1 and ds3 to Hawaii next week. He said his boss said he has to use some of his vacation days. Right now there is not a dog leash big enough to get dh out of the dog house he is in. I did tell him what the honey do list around the house is, but I am not holding my breath on any of it getting done. I told him since he has to use so much vacation time then just pencil me in for some scans, blood tests and drs. appts. too. lol.  Yup, nothing like spending quality time together, lol.



Doing alright, here, just been exceedingly busy. Got a promotion at work and have not been getting home until bedtime. Lol. 

I think if my DH tried to go to Hawaii without me, he'd be in biiiig trouble, too.


----------



## SingingMom

All is well here. Back from Central Europe ABD,  DD had her bottom wisdom teeth pulled Tuesday and is doing fine.  Starting to get her ready for her DCP internship - we 'lol be taking the Autotrain so she can have her car. DH and I are staying a week, plus a weekend, to settle her in and then stay for my birthday before we fly back.  
Deciding what to pack - she'll just take some clothes now and if she gets hired after internship is over in January, we'll have to reevaluate!  I'm planning at least three more trips to WDW to see her!!


----------



## Christine

Hi everyone, hope all is well.  SingingMom, I am envying your trip.  I took the Autotrain as a child--not sure I'd do it again but it certainly serves it purpose for getting the car there.  I live about 20 minutes from the Autotrain station so if you are spending anytime around there killing time and are looking for some recommendations on things to do close by, let me know!

I keep trying to plan a "quick trip" to Disney with at least ONE of my kids but they are working and no one can find the time.  I feel like singing that Cats in the Cradle song!

So, thyroid issues:  Last fall (and I think I posted about this), I started having severe hot flashes only at night.  Chalked it up to perimenopause (I am 51).  Felt fine otherwise.  I decided to back off my thyroid medication because I hadn't really slept in 6 week.  Lo and behold, after a week, the hot flashes were totally gone.  I kept a the lower dose for several months.  My TSH was running about 1.5 or so.  Then this past March, I decided to try to lose some weight.  It wasn't going very well so I decided to go back to my old dose.  The weight did start dropping (although I must admit I went "lower" carb at the same time) and I seemed to be tolerating that higher dose very well.  So I think I've been back on that higher dose for about 4 months.  The only thing I noticed was some random heart palps when things would get stressful.  I'm used to those so no big deal.  Then, about 2 weeks ago, the hot flashes at night started again.  I finally had to cut my dose again this past Wednesday.  I was really trying to hold out on this dose (with the hot flashes) to see where my TSH was.  I have a doctor's appointment on August 3rd, but I couldn't do it.  Lack of sleep got to me.  Last time I was hot flashing, my TSH wasn't overly alarming but, IMO, my Free T4 was way too high.  Higher than I've ever seen it.

I'm starting to wonder if it's something with the newly reformulated Levoxyl that I started back on in 2014.  But I think if it were the meds, it wouldn't take so long for me to get the hot flash stuff.  It's probably ME and my changing hormones affecting the stability of the medication.  It's so weird because for 20 years I've have been SO stable.  Anyway, I am going to discuss it all with my doctor in 2 weeks and maybe I'll change brands, but that's pretty disrupting too.  I had a hellacious year when Levoxyl was pulled from the market.  Uuughhh.

Hope everyone else is doing well.  I love summer but I'm not happy with this weird, rainy cloudy weather.


----------



## luvmarypoppins

singing mom - I would love to hear about your trip and I think the auto train is a great idea.

Christine - I hope your med issues can get straightened out and that you get to a good level that you are comfortable with and that your endo visit goes well. Also hope you are able to sell the car. We always just usually run them into the ground and then donate them not including the one van that was totaled by the girl on the cell phone. 

Well nothing too much new. Except for the usual bruises. At least they are not big and I see about 4 of them so far so that is good. A sweet elderly man from my church passed away yest. I guess ds2 and I will go to the viewing if it works out. Poor ds3 background check finally came through. She said she never saw one so long in her life. So now she said he might not make the orientation deadline and might have to start work in Sept. so one month with no income, sigh. Also he is going to ask if they are still going to assign him to the floor he interviewed on or will he be assigned somewhere else. We shall see. 

Dh and ds1 and ds3 leave 3am on thursday morning. Just heard the baggage handlers are going n strike. Hope its not at their airline and  ds3 is getting a surfing lesson from my cousins son who just moved to Hawaii. That should be fun. Its actually from his company that he works for. Ds is paying for it.


----------



## SingingMom

luvmarypoppins said:


> singing mom - I would love to hear about your trip and I think the auto train is a great idea.
> 
> Christine - I hope your med issues can get straightened out and that you get to a good level that you are comfortable with and that your endo visit goes well. Also hope you are able to sell the car. We always just usually run them into the ground and then donate them not including the one van that was totaled by the girl on the cell phone.
> 
> Well nothing too much new. Except for the usual bruises. At least they are not big and I see about 4 of them so far so that is good. A sweet elderly man from my church passed away yest. I guess ds2 and I will go to the viewing if it works out. Poor ds3 background check finally came through. She said she never saw one so long in her life. So now she said he might not make the orientation deadline and might have to start work in Sept. so one month with no income, sigh. Also he is going to ask if they are still going to assign him to the floor he interviewed on or will he be assigned somewhere else. We shall see.
> 
> Dh and ds1 and ds3 leave 3am on thursday morning. Just heard the baggage handlers are going n strike. Hope its not at their airline and  ds3 is getting a surfing lesson from my cousins son who just moved to Hawaii. That should be fun. Its actually from his company that he works for. Ds is paying for it.



DD and DH took a surfing lesson last August for her 21st birthday.  She LOVED it!!!  Very good too, for her first try!  The instructor was very impressed!  DH did ok - said it was a lot harder than he anticipated, was happy he tried, and doesn't need to do it again.  LOL 

Our trip was wonderful!   I'm doing a little trip report sort of thing on the Adventures by Disney forum - the title is Central Europe-Live.  I started it "live", but we were too busy and wifi was spotty, so I've been updating as I get a chance!   Right now I'm trying to wrap my brain around my DD leaving for her DCP internship.  I hate the thought of the autotrain, because I just want to BE THERE, but we want her to have her car and we are NOT driving all the way to Florida!  Virginia is far enough! 

   I am going to miss my little girl so much!!


----------



## 1Grumpy9

A little update on the parathyroid hormone I have been taking now for a little over a month...I have been having regular bloodwork done to get my numbers back to a normal range.  After upping my dosage mcg, I had bloodwork done last week and my Endo called me to let me know that my blood calcium is in the normal range!!!  I have been fighting this now for 8 yrs and this is the first time I haven't had a symptom in 8 yrs.  It is very weird not having a low and my nose and cheeks tingle, but it is a good weird.  My endo also said that I can start backing off the calcium/vitamin D pills that I was taking with the injection.  I am hoping that I can be off of them completely by the end of the year.

I have found that with this injection, I have picked some bad spots on the top of my thigh.  I look like I am beating myself up with the bruises on my legs.  I would hit a bad spot and it would bruise.  Oh well...if that is the only problem I have...I will take it!!


----------



## macraven

_i am so far behind on this thread, don't know where to start to visit with all that has posted.

i haven't been getting my email notices when a post has been made here.
went to the main board to find the thyroid thread.

now that i am wiser on connecting here, i won't be absent much longer..


hope all of you are hanging in there and feeling better.
i was due to have labs done 2 months ago for the thyroid testing levels and put it off.

i best do it soon or my endo won't renew my script......
i think my dosage is too low as i am feeling like a blob now.
hopefully, i can get the labs done one day next week.

enjoy the weekend and trip planning for those going to the motherland and places elsewhere in the world._


----------



## luvmarypoppins

singing mom - I enjoyed reading your trip report so far. It sounds like you were fun and busy! Sounds like ABD schedules and plans things well.

1Grumpy - so glad to hear the new med is helping you

macraven - I hope you are able to get the labs done. I know its not your favorite thing to do. You should treat yourself to something after you are done. 

Christine - are you reading anything good? I just finished a cozy mystery and then an amish novella. I dont know what I will pick next. I have quite a pile that I have won lately. Hope you get the car sold too!

Well lets see whats new... my endo visit is in sept. and she likes my tests done before that so its august next week and then I have the vascular surgeon in Sept. and what do I get in the mail, a notice for jury duty, not the regular kind, no its the grand jury one, agh,agh, and more agh!! It says its for 4 weeks or more. I dont want to postpone it, I just want to get it over with. I am just showing up with the wheelchair because I will need it to walk and put my foot up. It should be an interesting time for sure. I will def. need a disney vacation after all of this!!

And since I got that notice I decided to at least get the sonogram done, so I am doing that next tues. The blood test I can do on a week end if need be. 

The happy wanderers return from paradise tomm. Lol. I am happy they got to spend time with their cousin well its like 2nd cousin to them I think. Dh hurt his foot stepping on coral and he said ds3 fixed it up. Hope its ok. One other good thing was while they were there ds1 said he got a call back from a company he already had an interview at and they want him to come again for another interview. They originally told him it was between him and 4 other candidates, so I am praying for sure!!  Ds3 missed the orientation deadline, so now he cantstart until Sept.10th I think but they are having him on the same floor so that is good I guess.

Hope everyone is doing ok. Check in when you can.


----------



## bababear_50

Hi
My name is Mel
Guess i am feeling sorry for myself today and am looking to share and maybe find someone who has experienced some of the things I've gone through and am going through.

Background,,20o4 multiple nodules found on the thyroid gland,,boy was I sick. 
Hyperthyroidism Dx.
Muscle wasting, extreme heart pap,--I was given radioactive iodine. Lab test were lost and since I didn't know I needed replacement therapy after the radioactive iodine,, I never got put on anything for 3 month and by that time everyone was so scared I was going to die they were all blaming each other,,hell I just wanted someone to say sorry and give me the pills.
Hair loss and ,weight gain,skin issues--Hypo.
I don't have an endo as I found her to be a very poor doctor.
I have a new good family doctor whom I trust,,,this took alot of searching this past year.
I currently take levothyroxine 100mcg.

I feel like I'm getting old before my time,bone pain,aches,bones creaking and snapping,GERD, and
I could take a nap every afternoon if possible. This past week I experienced extreme pain in my throat and it hurt even more when I tried to inhale. The pain is worse when trying to lie down.
I am easily weepy,I can cry at a sad commercial.(This is just not me).
I had obvious signs of tendonitis in the rotator cuff (ultrasound,xray), yet I did nothing to cause this--no injury.
I saw a back-up doc today(mine is on Holidays) and she is sending me for a throat scan,somehow I feel like here we go again and I am not sure I have the strength to do this again.
So if this is the Parathyroid Glands acting up is there anything I can do the ease any of the symptoms? or does anyone have any thoughts?
Thank-you for listening.
Hugs Mel


----------



## macraven

_Mel  

hang in there....

someone will come along to answer your questions as others have experienced more than i have with the thyroid issue.
my only surgery has been the salivary glands but i am treated for hasimoto and on meds for that and the vitamin d deficiency.

i have not had any experience with the parathryroid glands.

rotator cuff i have experienced.
my left rotator cuff i had full should surgery to repair the r.c. and the snapped tendons.
months later, had the right side done but that one was not as bad.

some peeps use an endo others use the internist.
i did it both ways but was forced to go with the endo as internist could not help me anymore.
a good endo is hard to find and when you do, could be a 6 month wait before an appointment can be made.
i went through that myself.

i know you are suffering.
with hypo thyroid diagnosis, lots of us suffer from the tiredness, palps, weight gain, tears, etc.

you've come to the right place as many here can share with you._


----------



## bababear_50

macraven said:


> _Mel
> 
> hang in there....
> 
> someone will come along to answer your questions as others have experienced more than i have with the thyroid issue.
> my only surgery has been the salivary glands but i am treated for hasimoto and on meds for that and the vitamin d deficiency.
> 
> i have not had any experience with the parathryroid glands.
> 
> rotator cuff i have experienced.
> my left rotator cuff i had full should surgery to repair the r.c. and the snapped tendons.
> months later, had the right side done but that one was not as bad.
> 
> some peeps use an endo others use the internist.
> i did it both ways but was forced to go with the endo as internist could not help me anymore.
> a good endo is hard to find and when you do, could be a 6 month wait before an appointment can be made.
> i went through that myself.
> 
> i know you are suffering.
> with hypo thyroid diagnosis, lots of us suffer from the tiredness, palps, weight gain, tears, etc.
> 
> you've come to the right place as many here can share with you._




Hi Hon
Thanks for the kind words of support.
Yeah I guess I am just very nervous about what they might find although that is stupid because I've always been a "lets figure this out and deal with it kind of person".
Just when I figured out everything I needed to know about the Thyroid I get something new to learn about (Parathyroid Glands).
Well nothing I can do about it until I call Monday for a scan appt and even then I'll have to wait for the test and then the results.
Maybe it's time for me to redirect my thoughts to xmas shopping in Aug,,lol,,,lol. which usually drives my family crazy. But I love shopping for xmas in the summer.
Thanks for caring
Hugs Mel


----------



## Christine

Mel,

This doesn't sound like a parathyroid gland issue to me.  That mainly comes with tingling and muscle tetany.

It sounds to me as if you are still not fully medicated properly and are still hypothyroid.  Do you know what your latest lab values are?

Also, if you remain hypothyroid for too long, you definitely get other issues happening such as low vitamin D and low iron which can make the hypo symptoms much worse.  All of your symptoms sound like hypothyroidism to me, but I guess I could be wrong.  Easy to pull/tear muscles for no reason when you are hypo.


----------



## SingingMom

Mel - sorry for all that you are going through. Try to see if you can find a good endocrinologist. They really are the best route.  Thyroid trouble is more tricky than most realize I was just talking to an internist friend of mine last evening who said that thyroid trouble triggers so many different problems.  Best of luck to you!


----------



## bababear_50

Christine said:


> Mel,
> 
> This doesn't sound like a parathyroid gland issue to me.  That mainly comes with tingling and muscle tetany.
> 
> It sounds to me as if you are still not fully medicated properly and are still hypothyroid.  Do you know what your latest lab values are?
> 
> Also, if you remain hypothyroid for too long, you definitely get other issues happening such as low vitamin D and low iron which can make the hypo symptoms much worse.  All of your symptoms sound like hypothyroidism to me, but I guess I could be wrong.  Easy to pull/tear muscles for no reason when you are hypo.



Hi Hon
I will double check with my doc what my levels are,I guess I should inquire more often but perhaps mistakenly I leave it up to her to monitor.
Hugs 
Mel


----------



## bababear_50

SingingMom said:


> Mel - sorry for all that you are going through. Try to see if you can find a good endocrinologist. They really are the best route.  Thyroid trouble is more tricky than most realize I was just talking to an internist friend of mine last evening who said that thyroid trouble triggers so many different problems.  Best of luck to you!




I will speak with her this week about getting a good endo,thanks
Hugs Mel


----------



## 1Grumpy9

bababear_50 said:


> .
> So if this is the Parathyroid Glands acting up is there anything I can do the ease any of the symptoms? or does anyone have any thoughts?
> Thank-you for listening.
> Hugs Mel



Sorry you are having a hard time with everything...

I had my thyroid removed almost 9 years ago (wow I can't believe it has been that long)...but when they took my thyroid, they had to take my Parathyroid also.  I have suffered through this since my surgery.  My endo told me that 2 Tums equal the amount of calcium that a person should get in a day.  I left the hospital after surgery on 10 Tums a day and 2 OTC calcium pills a day.  She put me on a script of calcium/Vitamin D pill also (I was up to taking 10 of them a day).  This still was not bringing up my calcium levels.  I still would have the symptoms of a low day...tingling in my face and my thumbs would atrophy in towards my palm.  Finally in April my endo told me that the inject-able Parathyroid hormone was approved and I started that in June.  After some working with my endo and working the correct mcg of the injection, my levels are FINALLY to the normal level.  I have not had a symptom since and it makes it better now that I don't take all the Tums and I have slowly backed off my calcium/Vitamin D pills.

I hope this helps you a little with what is available for Parathyroid issues.


----------



## luvmarypoppins

bababear - welcome. I am sorry you are dealing with all these parathyroid issues. I think its important to get a good endo too. I go to a teaching hospital so they have quite a few on staff. I hope you can find one you will be happy with and does a great job of managing your care. I wouldnt let the internists I go to deal with my thy cancer stuff. Wishing you all the best.

macraven - did you get your blood work done? Hope it worked out for you.

Ds3 is taking me for the sono today. I have butterflies already. I always feel better after they dont call a dr. in and ask for more pictures, so that is basically the its all good sign around here. 

I am sending my papers in to be excused from the jury duty today.I hope they call the dr. because he didnt sign it with a signature and it wasnt even typed md, so I am wondering if this was just a medical student who did this. Oh well, I am sure I will be hearing something sooner rather than later. I wish they would do things right the lst time. Of course dh didnt read it when he picked it up. I have a feeling this might have to be a do over.


----------



## macraven

_LMP, i finally got up the nerve and went this afternoon for my labs to be drawn...

i've already have a blister over the needle site.
that happens everytime i get a draw.
the bruising will go away in a few days and it will then be a memory in the past.

except, have to have levels done for my Vit D levels mid september......


crossing my fingers that you can get out of jury duty!



bababear, hope you are doing okay and can find a doc that will help you treat your condition._


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## bababear_50

Good Morning everyone
My spirits are higher today, I have an appt. for scan at 1pm and will call for a follow up appt with my family doc. I have been busy trying to back read through the Thyroid Thread, alot of good information here.
I think I am going to give it a try looking for a new endo and request that a bone scan be done as I haven't had one in years,,actually since I got the RA.
I've seen so many specialists this year for other stuff I figure whats one more. 
Long story short--simple spot of eczema--became infected--turned into cellulitis--IV antibiotics--allergic to antibiotics--another IV antibiotic prescribed----extreme allergic reaction--I developed "Steven Johnson Syndrome "--and full body lesions and rash. I am now almost 80% back to normal.My skin is still healing in spots.

Thanks for all your info and support,Hugs 
Mel


----------



## luvmarypoppins

bababear - I hope your scan turned out well. I hope you get good results from the bone scan too. I just did the bone scan not that long ago. I had to have reclast infusions once yearly for the last 4 years. They normally do it for 5 but I had so many bad side effects they say 4 was enough for me. 

Well the sono was good all things considered. I didnt like my tech and this was not one of the 2 usual ones. Maybe this one is new? Well I didnt like her, she was kind of rough, all business and not very friendly at all. Plus she had a radiology student md maybe watching. Then he asked if he could scan me while she was waiting for the real dr. to read my stuff. He said they want the radiologists to get better at doing tests too and not just reading the results, heah, I am all for science and learning as long as its not invasive stuff etc. He was much more gentler and not pressing so hard on my neck. 
So they didnt ask for any more pictures, so I assume all is well, PTL. I am so thankful to God for sure.

Now next week for the blood tests one day I guess. 

I have been looking around for fall and dec. for the hotels for our disney trips and we cant even get the swan or dolphin with dh ff miles. I am thinking of having him call and ask what is going on. I told dh you are now the proud owner of 189K useless airline miles. lol. This is from the airline and not the actual hotel itself. They even got rid of the disney hotels. You used to be able to get them too but no more. I told dh maybe we just need a cashback card etc.


----------



## Christine

Just got my latest test results today.  For some reason, endo did not run a Tg, just the thyroid levels.  All are borderline hyper (as they should be); however, he believes it is contributing to my all night hot flashes.  Blood work revealed I am definitely in the the throes of perimenopause.  He thinks I probably just can't handle the hyper-ness now.  So, for a few weeks I'm going to lower my thyroid medication and see if I can get some relief (sleep) from the hot flashes.  If not, I will go to my GYN and try to possibly work out some HRT.

Oh, my Vitamin D levels are slowing rising but I have NOT been good with my supplements.  I have been getting about 15 minutes a day of direct sun on me though and so what is going up is happening naturally but I need to get better about taking supplements.  Summer is almost over...


----------



## macraven

_christine, i wish you the best on that.
tell me if i am incorrect but doesn't it take about 3 weeks when you change thyroid dosage levels before you can feel the change?

that has been the case for me when my dosage changes.

hope the sun has helped your vit d levels.
i'll be on the large script dosage for life on mine.
endo determined my body does not hold vit d in my body so i get a script for it.

Mr Sun is a lot cheaper than buying supplements........lol

don't know what to tell you about hot flashes and how to help it.
haven't had any so no experience with it.
from what you said, it must be miserable._


----------



## Christine

macraven,

Last October, I got the same hot flashes.  It went on for 6 weeks.  I lowered my meds and within a week they stopped.  I stayed at the lower dose for several months and then went back up because I was feeling so well.  I did fine for several month and they started again (but I have lost weight so that could be something).  I tried to tweak my dose again just like last time but I didn't really see an improvement although I didn't give it much time knowing I had an endo appointment and I wanted to see what my values were WHILE I was "flashing!"

I'm now starting the reduced dose again and I will give it several weeks before I decide if it's going to work.


----------



## macraven

_Christine, i hope you start to feel better real soon since you are increasing your dosage.
do you have pills in different levels or do you have to cut the pills you have when you change a dosage?


i just got a note from my endo and she wants me to increase my synthroid.
TSH dropped to 4.254 and T4 down to .92
have to have labs again in 6-8 weeks.

only problem is i don't have enough pills left this month without having a new script faxed to the pharmacy.

it's a little thing to take care of but with the medical system they have, it takes many days once you email the nurse to have a new script sent out.
last time i went through this it took over a week._


----------



## Christine

Wow, that's a shame you get such bad service as that.  I've usually had same-day service with most of my medication refills.

I'm actually decreasing my dosage and going on .100 mcg Synthroid rather than .137 (5.5 times a week) of Levoxyl.  But when I was cutting back, I would just take, say, six pills a week versus seven.  Or 6.5 pills per week instead of 7 and just cut the one pill on the day I just decided to take half. 

Increasing is a different story but if you had enough "stock" you could just add a half tablet to one of your days, but it doesn't sound like you do.

Any reason why your TSH is where it is.  That's subclinically hypothyroid and your T4 is pretty darn low.  Do you feel okay?


----------



## macraven

_i have felt lousy since the endo cut my synthroid down in March.
i move so much slower now........lol

she dropped me from 150 mcg synthroid to .125 and then in March to 100.
i have never been at a dose that low in the past 27 years.

she was great when i started with her but now her client load has doubled.
i don't think she can keep up with all the patients she has.
it takes 8 months for an office visit with her now.

there have been a lot of __endos retiring over the past 2 years and since she is well known, many have gone over to her practice._


----------



## luvmarypoppins

Christine - hope you can get the dosage straightened out so you can feel good. I have to take the 50,000 iu vit d script because my body is such a mess from the synthroid, osteoporosis etc. Would your endo consider a script. Did you ever have an actual vit d blood test. My endo always does that due to all my issues. I am sure the hot flashes are such a pain. I did have some and the heart palps a while back, told the endo and asked what I was doing about them and she mentioned hrt. I told her, no way nothing etc. She said, good for you. WTH??? is that suppose to mean. Now with my blood clot issues I know there is no way I could have hrt stuff due to those issues too. Sometimes I wake up hot but at least its not the heart palp or who knows. I am always in a daze if I wake up lol.  Wishing you all the bet and that you can feel like you soon.

macraven - I hope the new med dose hep you feel better too. Wow, that is alot for the tsh. What would your endo like your number to be at?? I hear you about finding a good endo. Mine is gold and now I see they just added 2 more women endos where I go, I am guessing the load is getting more now with obamacare patients etc.  That is long to wait for the meds. I have to call a nurse and they call it in, maybe in a day or two. 

I am anxious to see what my next blood test will show since I am going to tell her I feel like crap but I dont know if that is because of the blood clot etc. They did reg. bloodwork in the er and all that was fine supposedly. 

Sat on the porch and read a book with my leg up today, yeah I am living dangerously this summer, lol!!


----------



## macraven

_LMP, you are so right!

this chicago based medical group has been affected by obamacare.
they also take medicaid which many have taken advantage of for better health care.

it was hard to find an endo and once i did with this present doctor, i was thrilled with her.
as i said before, she is over worked and having nurses handle some of the things she once did for her patients.

i had a clot before and that made me feel like crap.
it took me a long time after i had surgery for it before i felt more like myself.
keep your leg up and enjoy what is left of summer.._


----------



## Christine

luvmarypoppins said:


> Christine - hope you can get the dosage straightened out so you can feel good. I have to take the 50,000 iu vit d script because my body is such a mess from the synthroid, osteoporosis etc. Would your endo consider a script. Did you ever have an actual vit d blood test.



I actually had another doctor prescribe me the high dose Vitamin D.  I took it one time and it gave me horrible joint pain that lastest 3 days.  I didn't want to do that again so I never took it again.  I *should* be taking the over the counter stuff, but I just forget.   I've had three Vitamin D tests.  The results were 21, 22, and 25.  The minor increases are due to me just spending more time outdoors.  Now I know I need to get serious about the supplementation.


----------



## Christine

macraven said:


> _i have felt lousy since the endo cut my synthroid down in March.
> i move so much slower now........lol
> 
> she dropped me from 150 mcg synthroid to .125 and then in March to 100.
> i have never been at a dose that low in the past 27 years.
> 
> she was great when i started with her but now her client load has doubled.
> i don't think she can keep up with all the patients she has.
> it takes 8 months for an office visit with her now.
> 
> there have been a lot of __endos retiring over the past 2 years and since she is well known, many have gone over to her practice._




It takes me about 6 months to get in with my endo and he goes on and off about taking new patients.  He likes to keep his practice small though.  But when I first started going to him, he would call me back in about a day with test results.  Now I notice that I have to call him so he does seem busier, but it's still not too bad. 

It does seem very odd to me that your doctor is cutting you so much.


----------



## macraven

_those are really low numbers for your vit d levels.
my lowest has been 7 and i am up to 17 now which is still not a good level.

if your body can retain vit d by sunshine, put on a pair of shorts and sit outside for 20 minutes each day.

the doctor cut my dosage level in the past as my numbers were climbing quickly.
now when i did leveled out, i guess and the cut back to only 100 on the synthroid, she realizes that my dosage is too low.
i had this problem with the internist years back and now it is happening again.

since i like the __endo, i'll stick with her as she is trying to stay on top of things for me._


----------



## luvmarypoppins

Well I made an appt. to get my blood work done on wed., so we shall see. Even if there is nothing wrong I doubt I will find out since my dr. is on vacation  until Sept. 

One time a nurse did call me and some other dr., who I am assuming was covering for her, wrote me a letter and said everything was within normal limits. 

I am still waiting to see if  I am excused from jury duty. I have to read the rules. I thought I read if I dont hear from them I am excused???

My  poor aunt who had hip surgery and got a blood clot now has mrsa and is really sick in the hosp.  I wish I was well enough to go and visit her but its in another state, so I just call her on the phone every day. She is my moms best friend but I call her aunt. 

We are looking at going to disney for the food and wine festival oct. 21-28. I dont really like the dates, but its the only time I could get the Swan for free.


----------



## luvmarypoppins

Well I got the blood tests done today, so that is all I need before I see the endo. They have a nurse call you if they dont get your testing results before you come in. So I shouldnt have anyone calling me since I have been on top of everything. 

As usual she always orders the works:
TG complete, TSH, Free Thyroxine Index, Comp Metabolic Panel and Vit D

If all this comes out normal well fine and good but I am still telling her I constantly feel like crap (tired etc) and see what she says. I dont know if the blood thinner is having any effect on any of this medwise (maybe an interaction)  or healthwise.

Christine - reading anything good? I am reading a historical fiction book about a midwife in the late 1800's. I just won that book from a blog and I also won 2 or 3 more so I gotta get my read on, lol! Just finished 2 amish books that I won too. I am giving those to a lady at church. 
Did you sell the car? I hope it worked out for you. 

Hope everyone is doing well.


----------



## Christine

luvmarypoppins said:


> Well I got the blood tests done today, so that is all I need before I see the endo. They have a nurse call you if they dont get your testing results before you come in. So I shouldnt have anyone calling me since I have been on top of everything.
> 
> As usual she always orders the works:
> TG complete, TSH, Free Thyroxine Index, Comp Metabolic Panel and Vit D
> 
> If all this comes out normal well fine and good but I am still telling her I constantly feel like crap (tired etc) and see what she says. I dont know if the blood thinner is having any effect on any of this medwise (maybe an interaction)  or healthwise.
> 
> Christine - reading anything good? I am reading a historical fiction book about a midwife in the late 1800's. I just won that book from a blog and I also won 2 or 3 more so I gotta get my read on, lol! Just finished 2 amish books that I won too. I am giving those to a lady at church.
> Did you sell the car? I hope it worked out for you.
> 
> Hope everyone is doing well.




Just reading some okay stuff.  I did just finish Atul Gawande's Being Mortal, which is an enlightening book about aging and how to better treat the elderly.  Good read.  Now I'm onto some fiction about cooking.  

I did sell the car!!  The original buyers didn't call back so I put it back on Craigslist and sold it within an hour.  Just after that happened, the original buyers called.  Oh well.  It's nice to not have so many cars in front of my house.


----------



## SingingMom

Just finished reading The Accidential Empress by Alison Pataki - historical fiction about Sisi,  Empress Elisabeth of Austria-Hungary.  We loved learning about her on our Germany ABD and visited her palaces in Vienna on our Central Europe ABD in June. 

Finalizing DD's packing for her internship. We leave a week from today! She seems to forget she will be sharing an apartment, bedroom, and closet!!


----------



## Lfsdromero

Just looking for some opinions.   I am having my left thyroid taken out next Tuesday (8-18-15) because of suspicions of cancer.  The biopsy came back inconclusive. My surgeon told me that I should be healed up enough in 30 days and will be able to go on our vacation to universal studios with no limitations on riding rides.  For you all that have been through this , do you think this is accurate?


----------



## squeegee

I don't know about riding rides, but it doesn't seem out of the question to me. 
My original total thyroidectomy surgery went really well and I don't recall having any problems healing it up at all. 
The part that took forever was the radiation and all of the prep work for that. 
I, personally, would be getting a second opinion, though, before having surgery on an inconclusive result. Unless there's been growth/changes, or some other alarming feature, I personally would take a bit of a watch and wait approach. 
There's a girl I work with who has been in a similar situation - two years now of watching and waiting after three inconclusive biopsies, but there has been absolutely no change in the nodules. She has ultrasounds and biopsies every few months.  It depends on your tolerance level, though. The word "cancer" is terrifying. 
Good luck, keep us posted, and enjoy your trip!


----------



## Christine

Thirty days is probably okay, but personally, I wouldn't.  While I think you'll be healed and nothing bad will happen, my neck was sensitive for quite some time.  I just can't imagine going on the type of ride that would put G-Force pressure on my head and neck.  The surgeon would know best about what goes on inside there.  You should just see how you feel.


----------



## macraven

_now my surgery in May was different from Lfs planned surgery and my surgeon told me different.
i had the salivary glands removed from my neck/jawline.
incision is from the left ear to the middle of my neck and has closed nicely over the past 11 weeks.

but, he told me it will take 4 to 5 months of healing inside.
nerves were clamped away from the growth areas and glands and it is a slow process for them to calm down and tissue to regrow in the areas where the glands and tumors were removed.
no Mission Space for me on my september trip....

he said i could try a ride like TOT or Test track but if it becomes an issue, back off from doing them.

my outside of the neck is good, the inside is still sensitive and still has swelling issues.

like christine posted, do what you want for rides and see how you feel 
you'll know if you have any limitations once you try a ride that has force to it._


----------



## luvmarypoppins

lfs - Wishing you all the best with your surgery today. I would avoid the jerky motion rides. I have only gone to Universal once or twice. Are you doing both parks? 

singing mom - hope you have a safe trip with your dd and that all goes well. I am sure she is so thrilled and excited. I read a little about that book you mentioned. 

Well I never heard from the jury duty people and its today, so I guess the blood clot and drs. note worked out well for me, lol. I hope that lady is right and says they will review me again in 2 years. By that time I am sure I will have something else to add to a lovely drs. letter,lol!!

I am starting to plan our Oct. trip. I made most of the adrs, so far just the dinners at BOG, Rose and Crown, Kona,Hollywood and Vine and Cape May for my dh crab coma. I am probably going to book tusker house lunch, chefs de france lunch and yachtsman dinner. Also saw there is one good group for the Eat to the Beat that I would like to hear - Air Supply and maybe Dennis DeYoung, hmm dating myself!!

So far we can get the Swan for free for 3 days, then go to the Dolphin and pay for 2 days since the Swan is sold out  and then go back to the Swan for another 2 days for free. Oh well, its only right next door so we can move everything ourselves. Only bad thing is the Dolphin bed size and sometimes we just go and get the bus at the Swan because its the lst stop and less crowded etc. 

Hope everyone is doing well


----------



## macraven

_LMP, i love trip planning especially the dining parts....
sounds like you have some lush meals set up.  

hooray for being exempted on jury duty_


----------



## macraven

_lfs, hope and pray that all went well with your surgery today!_


----------



## SingingMom

luvmarypoppins said:


> lfs - Wishing you all the best with your surgery today. I would avoid the jerky motion rides. I have only gone to Universal once or twice. Are you doing both parks?
> 
> singing mom - hope you have a safe trip with your dd and that all goes well. I am sure she is so thrilled and excited. I read a little about that book you mentioned.
> 
> Well I never heard from the jury duty people and its today, so I guess the blood clot and drs. note worked out well for me, lol. I hope that lady is right and says they will review me again in 2 years. By that time I am sure I will have something else to add to a lovely drs. letter,lol!!
> 
> I am starting to plan our Oct. trip. I made most of the adrs, so far just the dinners at BOG, Rose and Crown, Kona,Hollywood and Vine and Cape May for my dh crab coma. I am probably going to book tusker house lunch, chefs de france lunch and yachtsman dinner. Also saw there is one good group for the Eat to the Beat that I would like to hear - Air Supply and maybe Dennis DeYoung, hmm dating myself!!
> 
> So far we can get the Swan for free for 3 days, then go to the Dolphin and pay for 2 days since the Swan is sold out  and then go back to the Swan for another 2 days for free. Oh well, its only right next door so we can move everything ourselves. Only bad thing is the Dolphin bed size and sometimes we just go and get the bus at the Swan because its the lst stop and less crowded etc.
> 
> Hope everyone is doing well



I'll be going for the F&W for the first time. Going for a week to visit DD on my own, since DH is super busy at work in October. I'm not making any dining plans, since I don't know what her schedule will be.  I might be doing breakfast with her, depending on work! Lol  

Pretty set in our packing right now. A few more things to check for DD.  we'll take her shopping once we know her apartment situation.  Not looking forward to the autotrain, but we'll survive. Lol


----------



## luvmarypoppins

Wow, this thread is really quiet

ifs- hope you are healing from your surgery

singing mom - hope your dd is getting settled in. When are you going to F and W and seeing your dd. Dh and I are going Oct. 21-28 I think. Yay for a free Swan room.

Well lets see whats new in my otherwise boring summer. I got stung by a bee yest. Ouch. Glad ds3 the nurse was here before he left for the beach. 

Friday I am going to the endo. I will ask ds3 to take me because dh got dumped on since his boss is on vacation. 

Christine - this would be for you since I know you are the most knowledgeable. They mailed me my blood work and the tg and tsh are good but I think the T3, T4 etc. are not good. Of course some intern printed this stuff out and they used last years tests and not 6 months ago. But the comparison was that the numbers were all high last year and now they are lower. and now I am questioning if there is something wrong as I dont know how to interpret that. 

Reading anything good? I am reading some amish books since I won them. I have won nothing from Goodreads. I think they are mad at me because I did win one book and didnt even finish reading it. I really couldnt get into it and I think they see in their algorithm if you dont review what you win then they dont send you more for quite a while. Oh well. I have enough from other blog wins to read in my tbr pile. 

Also I think the tsh was 0.17 and now its 0.19. Would that make any difference???

I have to pullout the papers. (being lazy so I hope I wrote it all right)

Everyone check in when you can. Have a blessed day everyone!!


----------



## SingingMom

DD is all moved in and completing her training. She is working Attractions in MK FantasyLand. I'm very thankful we were able to spend the extra time with her, helping set things up. Six girls in 3 bedrooms, 3 baths.  Nice apartment, but she has to get used to living with 5 other people. As an only child, she doesn't have to share her personal space at home!

The Auto Train was an "interesting" experience!  The ride to Virginia was long after DH working all day.  We stayed overnight at the Embassy Suites off I-95 and our friends took us to lunch after checking in at the station. We had a bedroom with private bath.  The room was comfortable and we also spent some time In the lounge car. Dinner was pretty decent, too.  The bad part was bedtime!  Once the beds were made up it was extremely warm on the lower bunk that DD & I shared, and very chilly on the top bunk where DH was, since he was directly under the ac. The pillows were really flat, too.  Needless to say, I didn't sleep all night. I actually got out of the bed and sat up in the arm chair most of the night.  We paid for priority off boarding, which was the best $50 we ever spent! Lol. Our car was the second one off in Florida - out of around 250 cars!  It was then about an hour to WDW.  

Didn't spend much time in the parks because of moving & shopping with DD and the heat was unbearable. I'm looking forward to F & W the week of Oct 18!


----------



## Christine

luvmarypoppins said:


> Christine - this would be for you since I know you are the most knowledgeable. They mailed me my blood work and the tg and tsh are good but I think the T3, T4 etc. are not good. Of course some intern printed this stuff out and they used last years tests and not 6 months ago. But the comparison was that the numbers were all high last year and now they are lower. and now I am questioning if there is something wrong as I dont know how to interpret that.
> 
> Reading anything good? I am reading some amish books since I won them. I have won nothing from Goodreads. I think they are mad at me because I did win one book and didnt even finish reading it. I really couldnt get into it and I think they see in their algorithm if you dont review what you win then they dont send you more for quite a while. Oh well. I have enough from other blog wins to read in my tbr pile.
> 
> Also I think the tsh was 0.17 and now its 0.19. Would that make any difference???
> 
> I have to pullout the papers. (being lazy so I hope I wrote it all right)
> 
> Everyone check in when you can. Have a blessed day everyone!!



Yes, this thread has been quiet.  I've been forgetting to check it regularly.

LMP--if your T3 and T4 were high last year and lower this year, it just means that you are less medicated now than last year.  Your TSH is a tad bit higher too, so that would make sense, although those numbers are so close together it should not make a HUGE difference.  I'd be interested to know what the T3 and T4 were last year and why they were different enough to make the doctor remark this year. 

I will tell you that my Free T4 seems to move around a lot.  It's really strange.

Nothing much going on here.  I went to the beach for the day back in July.  Super nice day.  Loved it!  My son went back to school last weekend so I was busy organizing that.  I do miss him but it's nice having less "mess" in the house.

I've been reading but nothing noteworthy.  Gosh, I sound so boring.


----------



## macraven

_nothing new for me at this point.
getting ready for a mini trip to house hunt next week.
we are tired of living with snow and cold in the winter.
want to move that still have seasons, but no harsh weather.

have 27 days until i will be in orlando.....yippee


need to work in my labs before then for the vit d and thyroid tests.

hope all are doing fine here!_


----------



## luvmarypoppins

singing mom - we will be there oct. 20-27. Where are you staying? Maybe we could meet up sometime. 

macraven - where are you looking for a home? Dh and I were thinking about it too. My one friend already bought a condo in Myrtle Beach that they want to retire to. Her husband is already retired (early) and I think she has a couple more years for the pension.  I hope you have a great time in Orlando. Are you going to the Food and Wine Festival?

Christine - I got out the papers and here it is:
T4 (total) -  10.9 (now)  vs 12.9 (year ago)
T3 uptake    34 (now)    vs  39 (year ago)
T4 free calculated  3.7 (now)  5.0 (year ago)

So what does this mean???? I am confused as ever. My meds havent changed in a year except for the blood thinner and I dont think that would affect these numbers. TIA.


----------



## macraven

_at first we considered NC, TN or GA.
we ruled out FL as we do want some seasons other than summer....lol

chattanooga was our first choice but the tax system that works better for us is GA.
so we are going to look there next week at the border cities below the TN line.

i'll be in disney later this month and i wouldn't miss F & W !!!
i'll hit it on the beginning of it which i hope won't have large crowds.
i've done F&W early to mid october and found more crowds the later it gets in october.

christine is the expert here on understanding the thyroid test scores.
i remember i told mine here and she gave great info to me.

i think i will hire her to translate my next set of labs......
i trust her more than google..
_
_since my lab results have been up and down, my endo is having me get mine done every three months._
_but i'm pushing it off to four months this time....i just hate needles._


----------



## Christine

luvmarypoppins said:


> singing mom - we will be there oct. 20-27. Where are you staying? Maybe we could meet up sometime.
> 
> macraven - where are you looking for a home? Dh and I were thinking about it too. My one friend already bought a condo in Myrtle Beach that they want to retire to. Her husband is already retired (early) and I think she has a couple more years for the pension.  I hope you have a great time in Orlando. Are you going to the Food and Wine Festival?
> 
> Christine - I got out the papers and here it is:
> T4 (total) -  10.9 (now)  vs 12.9 (year ago)
> T3 uptake    34 (now)    vs  39 (year ago)
> T4 free calculated  3.7 (now)  5.0 (year ago)
> 
> So what does this mean???? I am confused as ever. My meds havent changed in a year except for the blood thinner and I dont think that would affect these numbers. TIA.


 
Hmmm....well these tests are different from the ones my endo runs so I can't tell you what the significance is without the lab ranges.  Only that you have less of those which, unlike TSH, less really means that you have less thyroid hormone circulating.   As long as these are still in the normal to high range that probably don't mean too much.  My doctor does do a Free T4 (but not calculated) so my numbers look a bit different than yours.


----------



## luvmarypoppins

Well I am back from the endo. She says those other tests are fine and that the numbers are "where she wants them to be", lol, her favorite saying.  

Told her about my blood clot drama. She says, its always something with you, lol, don't I know it..

She says my calcium is too low? The printout says it was 9.1 and now its 9.4. So now she wants me to take another 50,000 iu once a week, so I will be getting 100,000 iu a week!!! That seems like a lot but I guess my body is not processing or storing it.  My insurance also does not cover this for some reason, so I am glad it is not all that expensive. 

I know I am going to have issues with the pharmacy because they just filled it and I have to tell them the ins. doesnt pay for it and then they tell me its also how the dr. writes the prescription. etc. 

So I go back in 6 months. At the appointment desk they give me a date. I say what other days of the week do you have, they say, wed. only. WTH??? Now she is only seeing patients one day a week. I did see that they hired 2 more female endos. I sure hope she isnt planning on leaving. Because I am sure they sign a contract etc. 

macraven - make sure you find a good endo where you are moving to for sure!!!

Hope everyone has a great week end.


----------



## squeegee

luvmarypoppins said:


> Well I am back from the endo. She says those other tests are fine and that the numbers are "where she wants them to be", lol, her favorite saying.
> 
> Told her about my blood clot drama. She says, its always something with you, lol, don't I know it..
> 
> She says my calcium is too low? The printout says it was 9.1 and now its 9.4. So now she wants me to take another 50,000 iu once a week, so I will be getting 100,000 iu a week!!! That seems like a lot but I guess my body is not processing or storing it.  My insurance also does not cover this for some reason, so I am glad it is not all that expensive.
> 
> I know I am going to have issues with the pharmacy because they just filled it and I have to tell them the ins. doesnt pay for it and then they tell me its also how the dr. writes the prescription. etc.
> 
> So I go back in 6 months. At the appointment desk they give me a date. I say what other days of the week do you have, they say, wed. only. WTH??? Now she is only seeing patients one day a week. I did see that they hired 2 more female endos. I sure hope she isnt planning on leaving. Because I am sure they sign a contract etc.
> 
> macraven - make sure you find a good endo where you are moving to for sure!!!
> 
> Hope everyone has a great week end.



It's very possible your endo works at other locations on the other days of the week. Many times, the office won't automatically tell you there are other sites. Our physicians almost all go to "satellite" clinics during the week, so if you are a patient at one location, they may only be there one day a week, and 30 miles away the next day.


----------



## macraven

luvmarypoppins said:


> Well I am back from the endo. She says those other tests are fine and that the numbers are "where she wants them to be", lol, her favorite saying.
> 
> Told her about my blood clot drama. She says, its always something with you, lol, don't I know it..
> 
> She says my calcium is too low? The printout says it was 9.1 and now its 9.4. So now she wants me to take another 50,000 iu once a week, so I will be getting 100,000 iu a week!!! That seems like a lot but I guess my body is not processing or storing it.  My insurance also does not cover this for some reason, so I am glad it is not all that expensive.
> 
> I know I am going to have issues with the pharmacy because they just filled it and I have to tell them the ins. doesnt pay for it and then they tell me its also how the dr. writes the prescription. etc.
> 
> So I go back in 6 months. At the appointment desk they give me a date. I say what other days of the week do you have, they say, wed. only. WTH??? Now she is only seeing patients one day a week. I did see that they hired 2 more female endos. I sure hope she isnt planning on leaving. Because I am sure they sign a contract etc.
> 
> macraven - make sure you find a good endo where you are moving to for sure!!!
> 
> Hope everyone has a great week end.




_low calcium can be due to Hypocalcemia
i end up having high calcium which the endo watches.

mine has stayed at 9.9 up to 10.4

hopefully you'll be within the range on your next draw in 6 months.
when i have had a change for an increase in meds, my doc faxes a new script in for it.
walgreens makes the adjustment on the current script and issues me the difference for increase of meds.

maybe your pharmacy just needs an update for a higher dose of meds and can adjust the present script they are filling.

i hope it turns out to be a simple thing to change at your pharmacy and you don't have any issues with it.
yea, my endo only has hours on certain days of the week.
she moves from three different offices each week.

when i last saw her in july, she told me to return in 6 months but my labs will be every 3 months until i see her again.
the receptionist called me to her desk when i left the exam room and said the doctor wants me to make my return visit now.
the earliest appointment they had available for my 6 month return was next year, second week of May.....2016...

hope i have good luck in replacing her whenever i do move.
she has been perfect for me and i don't know how anyone can top her._


----------



## Christine

https://www.washingtonpost.com/nati...769e28-18f8-11e5-ab92-c75ae6ab94b5_story.html

Thought you all might enjoy this article that was in The Washington Post yesterday.


----------



## luvmarypoppins

Interesting article Christine. Hmm, they said more possibility of kidney, bladder and gyn cancers?? I thought mine told me leukemia???

Well I am back from the vascular surgeon and the clot is gone, PTL!! I only saw the np and not the surgeon. But there seemed to be a little miscommunication or I didnt quite understand her the last time. She asked me what the hematologist said and I told her I didnt go to one yet because you said there was no hurry etc. She said, um no you were suppose to see one before you came back here.

So now I still have to take the blood thinner until I see the hematologist and he does blood tests and then he will decide what the problem is and if I still have to be on them. I dont like the side effects from this med at all, especially the bladder/kidney stuff at times. Now that I read that stuff about the thyroid stuff, it got my even more worried.

So now next Friday I am gong to see a hematologist. They told me to just take anyone which I did, but I looked this guy up. I dont know if I could get along with him on a regular basis. It says his specialties are thoracic and gastro tumors along with lymphoma. So we shall see. Since I am already anticipating all the blood tests I will book that ahead at the lab so I can get it done the next day (Sat.). So now we will see what is the cause of the great blood clot mystery. 

Another day, another ologist. I am getting weary of this.


----------



## Christine

luvmarypoppins said:


> Interesting article Christine. Hmm, they said more possibility of kidney, bladder and gyn cancers?? I thought mine told me leukemia???
> 
> Well I am back from the vascular surgeon and the clot is gone, PTL!! I only saw the np and not the surgeon. But there seemed to be a little miscommunication or I didnt quite understand her the last time. She asked me what the hematologist said and I told her I didnt go to one yet because you said there was no hurry etc. She said, um no you were suppose to see one before you came back here.
> 
> So now I still have to take the blood thinner until I see the hematologist and he does blood tests and then he will decide what the problem is and if I still have to be on them. I dont like the side effects from this med at all, especially the bladder/kidney stuff at times. Now that I read that stuff about the thyroid stuff, it got my even more worried.
> 
> So now next Friday I am gong to see a hematologist. They told me to just take anyone which I did, but I looked this guy up. I dont know if I could get along with him on a regular basis. It says his specialties are thoracic and gastro tumors along with lymphoma. So we shall see. Since I am already anticipating all the blood tests I will book that ahead at the lab so I can get it done the next day (Sat.). So now we will see what is the cause of the great blood clot mystery.
> 
> Another day, another ologist. I am getting weary of this.




You are certainly a trooper!  All those visits would have be undone...I'm fretting about getting another lab draw (maybe tomorrow).  No reason for it.  It's all psychological.  When I don't have any doctor's appointments, I feel incredibly upbeat and healthy.  When I have to do my usual endo visits, it puts me back in the mindset of cancer and I feel like an ill person.  I'm just weird that way.

Anyway, I need to get my TSH done after being on the lower dose of Synthroid for 6 weeks.  I feel okay but I have noticed that I easily picked up a few pounds.  But to be very honest, I didn't exercise most of the summer and, with my son home, we've been hitting Chipotle a lot, getting peach milkshakes at Chick Fil A.  I didn't expect the rapid weight gain so I feel like *some* of it may be due to the med change, but we shall see.  I may try to do it tomorrow on my way home from work.


----------



## Christine

Had some labs done on my way home from work Friday.  Can't wait to see what they are.  He ordered a TSH, Free T4, chem panel, and thyroglobulin.  I've been on my lower dose now for about 5 weeks.  I have to say, my hot flashes are minimal and I am sleeping better than I have in years.  I'm almost betting that my TSH comes back hypothyroid to some degree, but who knows!  I am still having minor hot flashes which is probably normal to some degree for my age and the fact that I'm doing menopause now, but they are definitely management and not waking me up all night.  They were SOOOO bad before.


----------



## Christine

Finally got my lab results back.  The change in dosage caused my TSH to go from 0.2 to 0.5 and my Free T4 went from 1.7 to 1.4.  My doctor is okay with these results and I'm pretty happy because the dosage change took care of 90% of my "hot flash" issues.  Whew...that was awful.  I'm glad this worked because I was really dreading the possibility of having to figure out some HRT options.

My Tg was undetectable and my blood sugar, calcium levels, etc were all pretty good.


----------



## luvmarypoppins

Christine - I am glad the dosage change is helping with the hot flashes because they are the worst for sure. Its good you feel good at 0.5. I wish my endo would let me be anything more than 0.0. 

Hoping this helps you to continue to feel like yourself. 

That peach milkshake sounds yum! They are opening up a new chick fil a around here soon. I think its the first one around here.  

Well I am back from the hematologist. 4 blood vials. Seeing a med tech and answering questions. Seeing the nurse practicioner. Her eyes just about flew out of her head when I told her my original one thyroid tumor\ was 12.5 cen. Then I said the other one was 4 cent., lol.  Met the dr. He seems ok. A ltte hard to understand so Ihave to listen well but he is


----------



## luvmarypoppins

I had trouble with my posts poofing before. But the dr. was ok. Dh didnt care for him either. They are doing all these genetic clotting tests that take 2 weeks, so they took another 4 vials of blood, so 8 total!! Gheesh!! 

He said I still have to be on the blood thinner until these tests come back. If they are ok, I can stop the blood thinner and take a daily baby aspirin. If the tests come back bad ten I will have to be on the blood thinner fore the rest of my life, sigh. I have to go see him again in 2 weeks. Hopefully that will be the last of him.


----------



## Christine

Hope that all works out for you and you get off the blood thinner, but if not, at least you'll have an answer.  

Sadly, the peach milkshakes are gone for the season.  You'll have to wait until next summer to try one, but they are very good!  I don't usually get milkshakes ANY OTHER time of year from Chick Fil A--too fattening but they are very popular all year round.  So when your chain opens, give it a try when you really want a treat.  Other than that, I stick to the salad there.  In the winter, I do spring for their soup/sandwich combo which is a pretty big bowl of chicken noodle soup and a garden salad.  

Well, it's nice to have my medical issues out of the way until at least February.  I love when I don't have any tests/visits looming.


----------



## luvmarypoppins

Well I am working on trip planning to occupy myself while waiting to go to the hematologist. Next Fri. cant come fast enough. I always worry while waiting. I always think the worst of course, but with all my history and genetics its natural for me.

Also dh is in Calif.with ds2 so that does not help. I am trying to distract myself. So I did a little of the trip planning today.I renewed my annual pass. I had to call them because the address was wrong. So hopefully later I will try to do the fast passes. Dh and I really arent ride people. He likes Soarin and maybe Toy Story Mania and Buzz. We dont even go to most of the fast passes we pick out anyway. 

I also booked the airline tickets and what a mess that was. I dont know if it is still a mess but I am having dh call because I dont know if they need his exact middle name etc. I had to have them book the flight directly for us because I was trying to use our unused travel funds and mine was fine but dh kept being rejected. It was all on one reservation and even the Southwest agent didnt know what the problem was . I dont know if she wrote in dh  middle name and I dont know if that will be a problem or not I will let dh handle this when he gets home since I do everything else anyway. He can do something lol. 

singingmom - are you in trip planning mode yet?

macraven- how was the house hunting trip?

Christine - do you do the reading goal challenge on Goodreads? I am one book behind. I do have childrens books mixed in with my regular stuff so I am doing another childrens book review because I won it from the author so now I will be right on track with my goal for the year. I am reading 2 other books at the same time now too. Once is a romance and the other is a womens devotional type book. Won those too. The author signed the one. 

squeegee - I am sure your trip plans are finalized. I havent started on on Dec. trip yest. Just want to make sure this one is going well first. 

Check in when you can everyone.


----------



## macraven

_sorry i'm late to the party....
it is always something that comes up and don't have time to come here to chat and check up on everyone.

LMP, our offer was accepted and we are in the stage of securing a loan.
closing is next month.
went house hunting a couple of days after labor day.
saw 19 houses total in the 4 days.
did put an offer in for a house we fell in love with and got the call halfway home that it was not accepted.
so disappointed....

once home, we started looking again online for other places.
found 6 that we could live with and emailed the agent.
so after 2 days home, we went back south for another round of house hunting.
another almost 13 hour drive south.

put an offer on a house in a different location and it was countered.
we accepted and now rushing to get rid of our junk.
that is 30 years of junk......and not an easy task.

i leave in 3 days for orlando.
did online check in for disney hotel and haven't packed a thing yet for that 17 day trip.
did the fast past selection and adr's as soon as they opened for me.

the week after i get back from that vacation, son and i are going to st louis for 4 nights.
2 days after we are back, should be closing on the new house.

we need to find a RE agent to list our present house with.  first we have to clean up our place before we start interviewing agents.
talk about going nuts.......

did my labs on wednesday and only the cardiac panel was reviewed and sent to me so far.
my endo hasn't emailed me my results yet and that is the one i hope comes before i leave.
if the thyroid numbers are still off, my script will be increased.
really need to take care of that asap, especially by monday......

once i am at disney, i'll have time in the evening to post here.
taking my iPad so i can stay connected to the real world here.

hope all are doing fine!_


----------



## Christine

luvmarypoppins said:


> Christine - do you do the reading goal challenge on Goodreads? I am one book behind. I do have childrens books mixed in with my regular stuff so I am doing another childrens book review because I won it from the author so now I will be right on track with my goal for the year. I am reading 2 other books at the same time now too. Once is a romance and the other is a womens devotional type book. Won those too. The author signed the one.



No, I'm not on Goodreads.  Well, actually, I do have an account there and look at the site once or twice a year but just never got into it.  I always think I should.  I think a few years ago, the site would not work well on the computer or browser I had and I just gave up.   The last few times I went on there, though, it did work fine.  I guess I just haven't explored the whole thing to figure out what to do.  I tried to go on there and search for new books to read but the genres I picked didn't really give me anything interesting.  I'm sure I'm just using it wrong.  If I can't figure out something in a few minutes, I just move on!


----------



## SingingMom

I made my mammo & breast ultrasound appointments and rescheduled my endocrinologist appointment when I realized it fell smack in the middle of my Disney trip!  Oops. Lol. Cardiologist appointment needs to be made too. Neverending!  Lol

I have three Disney trips in the works. I miss my girl!  Looking forward to a girls week during Food & Wine. She will have a few days off during that time, so I'm can't wait!   Friends are going on a cruise in November, with some pre days in WDW, so I'm going again for three nights.  Then DH and I are going to spend Christmas with DD! 

In between all my trips, I am starting "the great purge" to start clearing out this house of 30 years of "stuff", just like macraven!  If DD gets hired permanently with Disney, we'll move to Florida when DH retires!


----------



## squeegee

Have been doing alright lately, myself, adjusting to my "new new normal." 
73 days to go for the trip. I've got ADR's made and am coming up on fastpass time. It's finally starting to feel close, like we're really going. 
I have an endo appointment the Friday before we leave, and the surgeon's follow up a few days before that, and hopefully I won't have to see them for several months afterwards.


----------



## luvmarypoppins

singing mom - You will be busy for sure, but so good you get to visit with your dd. Where are you staying for your Oct. trip. We will be at the Swan starting the 20th. Maybe we can meet up sometime when you are not busy with your dd.  

I hear you about the mammo. I am still waiting. The one dr. told me dont get it while on the blood thinner and the other one said it would be ok. Some how I know if something happened wrong it would happen to me so I will wait till hopefully I am off the med. I am behind alot so I want to get it done. 

macraven - I can't wait to read your live trip report. You are having a long great trip for sure. Where are you staying?

What is everyones Food and Wine plan? I def. dont want to go on the week ends. I think we will stick to the week days. I know Air Supply will be there when we are there and I would like to listen to them. 

I have a few favorites I want to do, one is the pork belly with black beans, we tried it after watching a tv special on it in the morning, the lobster slider, the cheese soup and a few others. Dh likes the food in Africa and anything else spicy he can find. I also like a noodle type dish in Germany if they still have it, nothing in Japan for me. 

macraven -I hear you about getting rid of all the stuff and moving. That is why ds3 is being nice and helping me now. So it will be easier later. Its a process for sure. But our garage and attic is def. decluttered alot from where it was. 

The last 2 times we moved we had movers and packers paid for by dh company so that was great. I couldnt imagine packing all the stuff myself.


----------



## Christine

luvmarypoppins said:


> I hear you about the mammo. I am still waiting. The one dr. told me dont get it while on the blood thinner and the other one said it would be ok. Some how I know if something happened wrong it would happen to me so I will wait till hopefully I am off the med. I am behind alot so I want to get it done.


 
Good choice on the mammo, IMO.  I would not get one while on a blood thinner.  I think you'd get a LOT of bruising.


----------



## luvmarypoppins

macraven - hope you are enjoying the Food and Wine!

Well the hematologist visit went well, didint even see him, just the np. I think this seems like the trend these days. Ugh! She said almost all the tests were normal so I am off the blood thinner, yay!! She said my folic acid is low and she is prescription some med that has folic acid, b6 and b12.

She said sometimes folic acid levels add to clotting issues and mine was a little on the low of the normal side. She also said one of the clotting test needs to be repeated 30 days after you are off the blood thinner to get a more accurate test, gheesh. So then I asked her if they test my B12 level and she said no, why. I said because I am always tired, I forgot to ask the other dr. to do it and I am wondering. So she ordered it for me, yippee

Another piece of the puzzle will get an answer. We will know if its truly hypo or b12 def. etc.

We are watching the storm stuff. It was really rainy here yest and windy. Everyone filled up the gas tanks after what happened during the last hurricane. Lessons learned. 

Ds3 starts his first night shift tonight and ds1 got a 2nd call back for a company on monday. They went from 150 applicants, to 1 40 person group interview. He went with a group of 15 and now he has a 2nd call back on monday.


----------



## mickeysgal

Hi - I'm glad I found this thread.  Need some of your advice.  I have been recently diagnosed with Hashimoto's thyroiditis...the doctor said my thyroid is functioning normally but antibodies are attacking the thyroid.  My regular doctor found a lump on my thyroid...sent me to an endo who did three biopsies.  Came back benign cyst.  Doctor wants to see me back in 3 months.  He prescribed 50MCG of Levothyroxine.  

Here are some of my questions and please forgive me if they sound silly as this is totally new to me and I'm trying to ramp up fast in knowledge.  
1.  If the thyroid is functioning normally, why would I need medication?  
2.  I take a lot of vitamin supplements...calcium (I'm over 50), multi vitamin, turmeric, fish oil, flax seed oil, vit d, biotin.  Are any of these not a good mix with this medicine?  I know I have to take the thyroid meds first thing in the morning, without any other supplements, but when I do take those supplements later in the day, are they ok to take in general, given I'm on thyroid medicine?  
3.  I'm a runner...I run half marathons and full 26.2 mile marathons.  I have a 20 mile run scheduled for this weekend.  I'm worried about starting this medicine and it making my heart rate increase/palpitations occur while I'm running.  I talked to the doctor and they said it shouldn't cause an issue with this dosage.  Does this sound right?  
4.  What kind of side effects can I expect once I start on this medicine?  

Thanks for reading this. Can anyone here help with these questions?  As you can probably tell, my head is spinning between the diagnosis and getting my facts straight and trying not to scare myself anymore than I already am.


----------



## Christine

mickeysgal said:


> Hi - I'm glad I found this thread.  Need some of your advice.  I have been recently diagnosed with Hashimoto's thyroiditis...the doctor said my thyroid is functioning normally but antibodies are attacking the thyroid.  My regular doctor found a lump on my thyroid...sent me to an endo who did three biopsies.  Came back benign cyst.  Doctor wants to see me back in 3 months.  He prescribed 50MCG of Levothyroxine.
> 
> Here are some of my questions and please forgive me if they sound silly as this is totally new to me and I'm trying to ramp up fast in knowledge.
> 1.  If the thyroid is functioning normally, why would I need medication?
> 2.  I take a lot of vitamin supplements...calcium (I'm over 50), multi vitamin, turmeric, fish oil, flax seed oil, vit d, biotin.  Are any of these not a good mix with this medicine?  I know I have to take the thyroid meds first thing in the morning, without any other supplements, but when I do take those supplements later in the day, are they ok to take in general, given I'm on thyroid medicine?
> 3.  I'm a runner...I run half marathons and full 26.2 mile marathons.  I have a 20 mile run scheduled for this weekend.  I'm worried about starting this medicine and it making my heart rate increase/palpitations occur while I'm running.  I talked to the doctor and they said it shouldn't cause an issue with this dosage.  Does this sound right?
> 4.  What kind of side effects can I expect once I start on this medicine?
> 
> Thanks for reading this. Can anyone here help with these questions?  As you can probably tell, my head is spinning between the diagnosis and getting my facts straight and trying not to scare myself anymore than I already am.



mickeysgal:  Sorry it took so long for someone to come back to this thread.  Sometimes it's very active, and then other times we all get on with things and forget to check back!

To answer your questions:

1.  If the thyroid is functioning normally, why would I need medication?
ANSWER:  It's best if you start now collecting reports from your lab work.  Thyroid issues are life long and if you change doctors or want to just have a reference for how you feel at a particular TSH/T4 level, then having copies of your thyroid lab work is good.  I don't know who you get your bloodwork done with but most labs now have the ability for you to sign up through them and you can access all your results without having to bother your doctor's office.  Anyway, you may be in the normal range; however, maybe you are closer to being subclinically hypo thyroid?  A small dose would help with that.  It could also be possible that treating you with synthetic thyroid hormone is a way to control the autoimmune aspect of it.  I don't know any doctor that would give thyroid hormone to someone whose numbers look good because it can cause side effects if you become over medicated.  50mcgs could cause an issue if your numbers are good.  Which is why I would try to see what your TSH is.

2.  I take a lot of vitamin supplements...calcium (I'm over 50), multi vitamin, turmeric, fish oil, flax seed oil, vit d, biotin.  Are any of these not a good mix with this medicine?  I know I have to take the thyroid meds first thing in the morning, without any other supplements, but when I do take those supplements later in the day, are they ok to take in general, given I'm on thyroid medicine? 

ANSWER:  Remember that levothyroxine is not a 'medicine' per se, but a hormone.  So it's not like an antibiotic, it's more like a birth control pill.  The supplements you list are all OK with it but take any calcium 4 hours away.  My endocrinologist did tell me that taking Vitamin D at the same time as the thyroid medication is okay.  I have issues trying to remember everything to take.  My top priority is the thyroid stuff so I get that in right away and generally forget everything else.  I need to, myself, do better with that as I am over 50 too and Vitamin D deficient.

3.  I'm a runner...I run half marathons and full 26.2 mile marathons.  I have a 20 mile run scheduled for this weekend.  I'm worried about starting this medicine and it making my heart rate increase/palpitations occur while I'm running.  I talked to the doctor and they said it shouldn't cause an issue with this dosage.  Does this sound right? 

ANSWER:  Well, I'm sure your run is now over.  The thyroid meds could cause heart palps, but it might take a week at least before you notice that.  Again, it all comes down to what your levels are pre-medication.

4. What kind of side effects can I expect once I start on this medicine? 

ANSWER:  If the dosage still keeps you in the normal range for thyroid levels, you might not notice a thing.  If it pushes you closer to hyperthyroidism, you might notice being jittery, increased anxiety, more frequent stools, moodiness, etc.  It's really individual.  Some people can get VERY hyper and not have any change at all.  Depends how sensitive you are.


----------



## luvmarypoppins

mickeysgal - welcome. I am clueless about your questions, but I am glad Christine could give your more insight. Hope things work out for you. Wishing you all the best.

singing mom - I know you are doing the countdown like us. I am sure you will be so happy to see your dd. If you see the strange lady pushing the wheelchair like a walker, that is me!!

Christine - our Chick Fil A is crazy. Like 20 cars waiting on the highway to get into the parking lot.The ds have found out many people they know got jobs there and the ds got me a salad and choc shake. It was good. 

macraven - cant wait to hear about your trip. 

Well tomm I have to book the town car to pick us up in Fl and the wheelchair that I rent. Also we have to book a car to take us to the airport. The flight leaves at 6:20 am and that just does not work out well with the ds work schedules.

I also had dh pick up the med from the hematologist at the pharmacy, its not there but my other reg, ones were. A mystery. I am calling tomm. to see if they sent it to another pharmacy or I will call the office to see what is going on. They are not in that office until Friday where I go, so I am sure it will be a while, sigh. 

I havent done any fast passes I doubt much is left, oh well. We shall see. I see the weather is going to be alot warmer than here for sure.


----------



## luvmarypoppins

Well dh just gave me a little reading enjoyment, and what wold that be you might ask?????
Oh yes, our new health insurance plan for the new year. All I can say is  and more 
Rumor was that it would be bad and boy is it ever going to cost all of us $$$, no matter what plan you pick and you dont have many options

From my quick glance,of course the meds are going up way up and I dont know what the new companys formulary is and now they say you can do direct mail order with cvs retail pharmacys.  I dont know  about that one. 
Worst changes - er visits and urgent care used to be free, now it will be $100 for each er visit and$50 for urgent care and $20 for  walk in clinic. I do go  to an urgent care but dont know what the new ins will classify the place as. 

Ct scans and mris were free and now they will  be $50 each. Those are some of the things I read. They dont even tell you what changes they are, you have to  figure it out yourself. 

Good I am going to my happy place in 3 days, lol!!


----------



## Christine

luvmarypoppins said:


> Well dh just gave me a little reading enjoyment, and what wold that be you might ask?????
> Oh yes, our new health insurance plan for the new year. All I can say is  and more
> Rumor was that it would be bad and boy is it ever going to cost all of us $$$, no matter what plan you pick and you dont have many options
> 
> From my quick glance,of course the meds are going up way up and I dont know what the new companys formulary is and now they say you can do direct mail order with cvs retail pharmacys.  I dont know  about that one.
> Worst changes - er visits and urgent care used to be free, now it will be $100 for each er visit and$50 for urgent care and $20 for  walk in clinic. I do go  to an urgent care but dont know what the new ins will classify the place as.
> 
> Ct scans and mris were free and now they will  be $50 each. Those are some of the things I read. They dont even tell you what changes they are, you have to  figure it out yourself.
> 
> Good I am going to my happy place in 3 days, lol!!



I've been doing the CVS thing for about 2 years now and it's WONDERFUL.  I used to have to mail order all my chronic-use medications and, at least for the Synthroid, that really bothered me because of the temperatures outside and how delicate the medication was.  No, CVS fills my 90 day meds right on site and there are no more worries there.  My son gets a good bit of asthma meds that way and it's just so nice not to have to deal with the mail order of a 90 day supply.

It sounds like your previous plan was a real "cadillac" plan that was probably super expensive for the employer. I'm not sure how long it's been since I've heard of free, or $0, copays for urgent cares or ERs.  

We have had my husband's plan since the 1980s and it has changed very little except it's actually gotten a little better.  We've never had the copay thing and have ALWAYS done an 80%/20% split on every visit.  Sometimes that works out for me and sometimes I lose out.  But it does force me to take a look at expenses and shop around for more reasonable doctors if I have that option. I think that approach has worked out well for the company, who is self-insured, because when you are just paying a $50 copay, you don't really think about cost and what the doctor charges.


----------



## luvmarypoppins

omg my thyroid peeps   google international thy conf at the swan, i might just corner one of these guys if i see them!!!

actually we saw a guy with his briefcase at rose and crown tonight

air supply was awesome


----------



## luvmarypoppins

singing mom - I hope your trip is gong better than mine
Lets see...
The wheel fell off the wheelchair and it took 2 1/2 hours and some lies for the guy to finally show up with a new chair which dh had to wait for at the front of epcot. Its a nice old vinyl chair with plastic handles, not fun in the fl heat

I called my aunt during wishes and sadly she told me my uncle passed away. It was expected.
I was up sick 2 nights from the food here. I know the gastro dr. is in my near future

Come back to the room today and its not even made up. 
I will be glad when this vacation is over, sigh.


----------



## squeegee

luvmarypoppins said:


> singing mom - I hope your trip is gong better than mine
> Lets see...
> The wheel fell off the wheelchair and it took 2 1/2 hours and some lies for the guy to finally show up with a new chair which dh had to wait for at the front of epcot. Its a nice old vinyl chair with plastic handles, not fun in the fl heat
> 
> I called my aunt during wishes and sadly she told me my uncle passed away. It was expected.
> I was up sick 2 nights from the food here. I know the gastro dr. is in my near future
> 
> Come back to the room today and its not even made up.
> I will be glad when this vacation is over, sigh.



So sorry to hear things are not going well. 

*hugs*


----------



## SingingMom

luvmarypoppins said:


> singing mom - I hope your trip is gong better than mine
> Lets see...
> The wheel fell off the wheelchair and it took 2 1/2 hours and some lies for the guy to finally show up with a new chair which dh had to wait for at the front of epcot. Its a nice old vinyl chair with plastic handles, not fun in the fl heat
> 
> I called my aunt during wishes and sadly she told me my uncle passed away. It was expected.
> I was up sick 2 nights from the food here. I know the gastro dr. is in my near future
> 
> Come back to the room today and its not even made up.
> I will be glad when this vacation is over, sigh.



So sorry!!   I got home late yesterday. I had a wonderful visit with my girl! She had a few days off so we played in the parks most of the time!  I met some of her coworkers and saw her roommates again. I took her on a few errands and we visited with two friends. Missed seeing a few other friends due to schedule conflicts and a few cousins.  I'm sure we will see them the next few trips. I'm coming back for a quick three nights in two weeks, and DH & I are coming for Christmas.  DD was invited to extend, so now her internship is completed in May 2016!  Of course, she's hoping for a permanent position at that point!!

This was my first time at Food & Wine - I was under impressed. That was the only evening I didn't feel great - too many mixtures of different types of food.  However, we did have some good meals at two new places for us Yak & Yeti and Sanaa.  I would return to both.

Weather was gorgeous.  I could have used a bit more time lounging at the pool, but DD wanted to enjoy the parks, so I let her make the agenda!  It was so good to see how great she's doing down there!! Very proud of her! 

Hope your next trip is more enjoyable!!


----------



## Christine

LMP--sorry to hear about your less-than-stellar trip.  I've had a few rough nights at Disney with regard to food.  All on me know.  Just from overdoing it.  One of the trips I went on back many years ago (my oldest had just graduated middle school) was a rough one for me.  I had been to afternoon tea and then a late dinner at Artist Point.  I spent a few hours just miserable in the bathroom.  I think the strawberries and cream at tea did me in with the acid.  Soon as I got back from Disney I went to my gastro and he put me on a "white diet" for a week just to get my stomach under control.  Now, when I go, I take it REALLY easy.  If I am having a big dinner, then I just eat lightly during the day.  No more food marathons for me.   But the last few times I've traveled there and did this, I have felt much better.  The last trip, I ate very normally (didn't clear my plate) and I actually lost 5 lbs on the trip from so much activity and not gorging myself.

Singing Mom, we did Sanaa on our last trip and I agree that it's a great dining experience. I can't say Indian food is my favorite but I really enjoyed the meal and the restaurant was pretty peaceful.


----------



## SingingMom

Christine said:


> LMP--sorry to hear about your less-than-stellar trip.  I've had a few rough nights at Disney with regard to food.  All on me know.  Just from overdoing it.  One of the trips I went on back many years ago (my oldest had just graduated middle school) was a rough one for me.  I had been to afternoon tea and then a late dinner at Artist Point.  I spent a few hours just miserable in the bathroom.  I think the strawberries and cream at tea did me in with the acid.  Soon as I got back from Disney I went to my gastro and he put me on a "white diet" for a week just to get my stomach under control.  Now, when I go, I take it REALLY easy.  If I am having a big dinner, then I just eat lightly during the day.  No more food marathons for me.   But the last few times I've traveled there and did this, I have felt much better.  The last trip, I ate very normally (didn't clear my plate) and I actually lost 5 lbs on the trip from so much activity and not gorging myself.
> 
> Singing Mom, we did Sanaa on our last trip and I agree that it's a great dining experience. I can't say Indian food is my favorite but I really enjoyed the meal and the restaurant was pretty peaceful.



I don't care for Indian food at all, but I had the lamb chops, pork tenderloin, & sausage dish with mashed potatoes & vegetables. It was fabulous.  Grilled meat - not spicy, thankfully!  We loved the "bread service". I would return and order just that and a drink!  

I also have stomach issues, so I was super careful and did well this trip. Except for the F & W evening!  Lol  I wasn't sick, but I definitely felt  "off" after all the different combos.


----------



## macraven

i've tried to keep up and read here but have been sick since i returned from my trip.
hope to improve and can join back in here regularly.

hugs to all of you!


----------



## mickeysgal

Christine said:


> mickeysgal:  Sorry it took so long for someone to come back to this thread.  Sometimes it's very active, and then other times we all get on with things and forget to check back!
> 
> To answer your questions:
> 
> 1.  If the thyroid is functioning normally, why would I need medication?
> ANSWER:  It's best if you start now collecting reports from your lab work.  Thyroid issues are life long and if you change doctors or want to just have a reference for how you feel at a particular TSH/T4 level, then having copies of your thyroid lab work is good.  I don't know who you get your bloodwork done with but most labs now have the ability for you to sign up through them and you can access all your results without having to bother your doctor's office.  Anyway, you may be in the normal range; however, maybe you are closer to being subclinically hypo thyroid?  A small dose would help with that.  It could also be possible that treating you with synthetic thyroid hormone is a way to control the autoimmune aspect of it.  I don't know any doctor that would give thyroid hormone to someone whose numbers look good because it can cause side effects if you become over medicated.  50mcgs could cause an issue if your numbers are good.  Which is why I would try to see what your TSH is.
> 
> 2.  I take a lot of vitamin supplements...calcium (I'm over 50), multi vitamin, turmeric, fish oil, flax seed oil, vit d, biotin.  Are any of these not a good mix with this medicine?  I know I have to take the thyroid meds first thing in the morning, without any other supplements, but when I do take those supplements later in the day, are they ok to take in general, given I'm on thyroid medicine?
> 
> ANSWER:  Remember that levothyroxine is not a 'medicine' per se, but a hormone.  So it's not like an antibiotic, it's more like a birth control pill.  The supplements you list are all OK with it but take any calcium 4 hours away.  My endocrinologist did tell me that taking Vitamin D at the same time as the thyroid medication is okay.  I have issues trying to remember everything to take.  My top priority is the thyroid stuff so I get that in right away and generally forget everything else.  I need to, myself, do better with that as I am over 50 too and Vitamin D deficient.
> 
> 3.  I'm a runner...I run half marathons and full 26.2 mile marathons.  I have a 20 mile run scheduled for this weekend.  I'm worried about starting this medicine and it making my heart rate increase/palpitations occur while I'm running.  I talked to the doctor and they said it shouldn't cause an issue with this dosage.  Does this sound right?
> 
> ANSWER:  Well, I'm sure your run is now over.  The thyroid meds could cause heart palps, but it might take a week at least before you notice that.  Again, it all comes down to what your levels are pre-medication.
> 
> 4. What kind of side effects can I expect once I start on this medicine?
> 
> ANSWER:  If the dosage still keeps you in the normal range for thyroid levels, you might not notice a thing.  If it pushes you closer to hyperthyroidism, you might notice being jittery, increased anxiety, more frequent stools, moodiness, etc.  It's really individual.  Some people can get VERY hyper and not have any change at all.  Depends how sensitive you are.



Thank you Christine for responding.

My marathon is over...I didn't notice anything different in regards to heart rate, so that's a good thing.

Lately though, I been very tired in the afternoon, have to take a deep nap to continue on through the rest of the day. It seems like I've been a bit more tired than my usual if that makes sense.  Back to more frequent hot flashes as well.  Don't know if that's my general "going through Menopause" self or tied to this thyroid issue somehow.  

Picked up a book on Amazon called Hasimoto's Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause.  Over 1000 positive reviews so hopefully I can learn something here.

Curious...the doctor did not mention any lifestyle or dietary changes.  Shouldn't he have?  Want to make sure I have a "good" doctor.


----------



## Christine

mickeysgal said:


> Thank you Christine for responding.
> 
> My marathon is over...I didn't notice anything different in regards to heart rate, so that's a good thing.
> 
> Lately though, I been very tired in the afternoon, have to take a deep nap to continue on through the rest of the day. It seems like I've been a bit more tired than my usual if that makes sense.  Back to more frequent hot flashes as well.  Don't know if that's my general "going through Menopause" self or tied to this thyroid issue somehow.
> 
> Picked up a book on Amazon called Hasimoto's Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause.  Over 1000 positive reviews so hopefully I can learn something here.
> 
> Curious...the doctor did not mention any lifestyle or dietary changes.  Shouldn't he have?  Want to make sure I have a "good" doctor.



I probably mentioned the hot flashes stuff somewhere upthread.  I am 51 and going through menopause.  Earlier this year, I was on a higher dose of thyroid medication than I am now.  I have been on a very high dose of thyroid hormone for 20 years--suppressive doses are a treatment for thyroid cancer.  Anyway, in this last year, these hot flashes have been UNREAL.  So, my doctor did lower my dose and they have dropped significantly to what I would consider a more normal amount for menopause.  So your more frequent hot flashes and late-day tiredness *could* be due to the addition of thyroid meds.  After you've been on them for 8 weeks, have your blood work redone.  Besides a TSH, ensure your doctor gets a Free T4 measurement.  That level is the one that really tells your thyroid status.

I don't think diet or lifestyle changes will do anything; although, it could be said that a clean, healthy lifestyle will go a long way to reducing autoimmune disorders such as Hashimotos.


----------



## luvmarypoppins

Well I am back and trying to catch up

macraven - sorry you are sick. Hope you are feeling better. I am sure you have alot on you too with selling the house. Hope all is going well

mickeysgal - I hope you find a good endo who can help manage your care.

Christine - hope things are going well. My dh is coming to your neck of the woods soon and of course I cant discuss it but its a really important bldg. he is going to.  Reading anything good? I just won another book on goodreads and one from an author, so I am always busy reading. 

singingmom - did you see any of the drs. walking around with those convention bags?? We didnt even get to the pool. We did got to the Garden Grove on Sunday which we like and dh went to the Java Bar a couple times for breakfast stuff. Our room was an 8th floor corner view with fireworks viewing and the water too. Very nice view!!!

squeege- hope you are doing well and wondering if you are getting all that bad weather and flooding???

I feel like my head is spinning. All we did was come home, I emptied the suitcases, did the laundry and then we had to pack for the funeral. Went there. It was good to see my aunt and family. We got to meet my cousins dd's fiance. We are going to the wedding June 10th. He seems like a nice guy. My uncle was the captain and a 29 year member of the rescue squad so they had a little service and a honor guard always stood at his head and feet. Very touching. 

Now we all seem to have some kind of cough/cold thing which we got from ds3.  I am going to be doing a little dining report soon. Friday I go to the hematologist.They will see if the test is good so I can stay off the blood thinner and I asked them to check my B12 level, so we shall see. 

Ds1 starts a part time job on Monday in his field finally. The guy at the plant said he can still work there part time and he does the basketball stuff part time too, so 3 part time jobs, oh well the economy here is not that great for sure.  Hopefully one day this week we can celebrate ds3 b day or next week.


----------



## squeegee

luvmarypoppins said:


> Well I am back and trying to catch up
> 
> macraven - sorry you are sick. Hope you are feeling better. I am sure you have alot on you too with selling the house. Hope all is going well
> 
> mickeysgal - I hope you find a good endo who can help manage your care.
> 
> Christine - hope things are going well. My dh is coming to your neck of the woods soon and of course I cant discuss it but its a really important bldg. he is going to.  Reading anything good? I just won another book on goodreads and one from an author, so I am always busy reading.
> 
> singingmom - did you see any of the drs. walking around with those convention bags?? We didnt even get to the pool. We did got to the Garden Grove on Sunday which we like and dh went to the Java Bar a couple times for breakfast stuff. Our room was an 8th floor corner view with fireworks viewing and the water too. Very nice view!!!
> 
> squeege- hope you are doing well and wondering if you are getting all that bad weather and flooding???
> 
> I feel like my head is spinning. All we did was come home, I emptied the suitcases, did the laundry and then we had to pack for the funeral. Went there. It was good to see my aunt and family. We got to meet my cousins dd's fiance. We are going to the wedding June 10th. He seems like a nice guy. My uncle was the captain and a 29 year member of the rescue squad so they had a little service and a honor guard always stood at his head and feet. Very touching.
> 
> Now we all seem to have some kind of cough/cold thing which we got from ds3.  I am going to be doing a little dining report soon. Friday I go to the hematologist.They will see if the test is good so I can stay off the blood thinner and I asked them to check my B12 level, so we shall see.
> 
> Ds1 starts a part time job on Monday in his field finally. The guy at the plant said he can still work there part time and he does the basketball stuff part time too, so 3 part time jobs, oh well the economy here is not that great for sure.  Hopefully one day this week we can celebrate ds3 b day or next week.



I'm lucky enough to live in a part of town that doesn't readily flood. It seems like there were several disasters in neighboring areas, though. We heard of three tornadoes in surrounding towns, but nothing like that in San Antonio proper, thank goodness. 

It's the time of year for me that seems like never-ending doctor's visits. I'm seeing my endo in a couple of weeks, the surgeon next week, my vascular surgeon in a week and a half, my internist next weekend, and saw my obgyn last week. 

That visit didn't go spectacularly - I get to have a mammogram in a couple weeks and go see her again for the results. There is a "nodularity" on the left, up near my armpit. The left is where all my thyroid cancer was, so I'm not feeling particularly optimistic about this. Will keep everyone posted once I get the results. 

Otherwise, we had a good Halloween, a nice visit from my parents, and things are generally going well.

Here's little monster in her costume: 

 

She was probably the happiest, most energetic little bat-girl I've ever seen. Lol. 

We're 38 days out from our trip, and I'm getting more excited by the day!


----------



## Christine

luvmarypoppins said:


> Christine - hope things are going well. My dh is coming to your neck of the woods soon and of course I cant discuss it but its a really important bldg. he is going to.  Reading anything good? I just won another book on goodreads and one from an author, so I am always busy reading.


 
Lots of important buildings so I won't even try to guess!!

I haven't read anything that stands out.  They've been enjoyable enough, though.  Don't think I'll meet my goal of 50 books by December.  Not sure why my reading is so slow this year.

We didn't "do" Halloween this year!  That's a luxury you get when your kids are old.  My DS came home from school for the weekend so we went out to dinner on Halloween night.  Next morning I went out to do my usual grocery shopping run and had the treat of a real dead body in a neighborhood about 5 miles from me.  No idea what happened but it was a homicide.  It appears the guy was trying to crawl up someone's front steps when he didn't make it.  Cops had just arrived right before I drove by but I REALLY had to do a double-take as I *thought* it was a Halloween prop.  Sorry if this freaks anyone out, I just had to "share" that because I can't quite believe it.  Good Lord, the poor people in that neighborhood. I'm sure it was some sort of "gang" activity.  The neighborhood isn't an overly bad one, but not great either so not too shocking.

Well, that's all MY excitement!!!


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## luvmarypoppins

squeegee - glad you were spared from the bad weather and your dd is adorable! 

macraven - how are you feeling

Christine - that was scary about the dead body. 

Well I am back from the hematologist. I was trying to comprehend but dh with his usual butting in big mouth distracted me as usual. As usual I only saw the np and not the actual hematologist. She said my b12 level is low. I think its 200 and they want it to be 400??   She said my ferritin store levels are low too, a 12. She said they want to give me IV iron. I said I am not too thrilled about that. So she said they would try a pill first and see how I tolerate it. 

She said they may never know why I got the blood clot, sigh. She said with the aspirin as with the xarelto I may till have bruising. I showed her a recent one.

Here is the funny part - she grabs my arm and says - wait your skin looks so discolored here. Do you wear a watch? I said, um no its from a Disney Magic Band. She said, um ok. I said yes, it was the Food and Wine Festival. I guess she doesnt share the disney love, lol!!!

Dh is off to travel again for 2 trips next week. He leaves sunday. 

So now I have to go back for another B12 shot next month. Somehow I dont see the end to visits there. They havent asked me for a copay and I dont know why. Sometimes if you get a shot with my ins. they bill it differently than a visit. I dont know. I am sure a big bill is in the future. But I dont want to keep going to this place forever. 

She said the iron iv would be a two time deal. And that i justs great because as I said before our ins. is changing and who knows how difficult or easy the new plan will be. I feel it will be difficult for stuff. etc. I dont even know if they will take our ins. but considering they are the only place around here, I am thinking they will.


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## macraven

LMP, i was taking the vit b shots for almost a year.
hate to say it but it was a waste of my time.
the injections did not correct my situation.

how long have you been receiving them?
did you ask how long of a time frame they would be needed?


----------



## Christine

LMP--

I used to have very low ferritin also (I was having heavy periods AND I was taking a lot of ibuprofen).  I tablets helped me greatly.  I know a few people who had the IV iron and it can really make you feel bad for a few days.  It depends what type they use.  I'm surprised, though, that the doctor did not want to get to the bottom of why your ferritin/iron is as low as it is.  Do you have any ideas why?


----------



## SingingMom

On my way to Disney again tomorrow morning....    My 13 year old niece passed away last week and DD came home for the funeral.  Disney was wonderful about giving her time off to fly home.  My niece was a healthy 2 year old when she contracted encephalitis, which left her with irreversible brain damage, seizures, and with a feeding tube.  My sister has cared for her 24/7 for eleven years.  Poor angel suffered, but now is at peace.  It was a very difficult week.     Yesterday DD  was able to have a theatre outing with DH and tomorrow I'll fly back with her and stay three nights to see the Christmas lights and go to Mickey's Very Merry Christmas Party.  We need to smile a little after such a sad time....  then she's back to work!


----------



## Christine

SingingMom said:


> On my way to Disney again tomorrow morning....    My 13 year old niece passed away last week and DD came home for the funeral.  Disney was wonderful about giving her time off to fly home.  My niece was a healthy 2 year old when she contracted encephalitis, which left her with irreversible brain damage, seizures, and with a feeding tube.  My sister has cared for her 24/7 for eleven years.  Poor angel suffered, but now is at peace.  It was a very difficult week.     Yesterday DD  was able to have a theatre outing with DH and tomorrow I'll fly back with her and stay three nights to see the Christmas lights and go to Mickey's Very Merry Christmas Party.  We need to smile a little after such a sad time....  then she's back to work!




OMG how awful for your sister and niece.  Poor baby.

Have a great time at Disney!


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## macraven

_sad to hear of your loss of your niece.
hugs...._


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## luvmarypoppins

singing mom -  so sorry to hear about your niece. Praying for Gods peace and comfort for your family.


----------



## 4HOLIDAYS

Hello All- I have been reading lots of this thread over the last couple weeks since finding a lump on my throat.  I have to say it made me feel SO much better knowing I am not the only one going thru this.

I have had the ultrasound, uptake scan and test and biopsy and was told Benign. Yah! I still have the lump and am now waiting to see an endo.  My regular dr handled everything for me within 2 weeks time but now I have to probably get meds? That was the comment from my dr.

I can not believe the times I have been given for seeing a dr.  Everything from 3 weeks(to see a PA-as the dr only sees hospital follow up patients-I think he is going to retire soon-he's 71) or 2 months or 4 months. Seriously.

Any idea what I can expect to happen?  Any thoughts on seeing a PA instead of an MD?  I don't like he idea of waiting months.  Has anyone had benign nodules (I think multigrandular goiter-agin heard that phrase used repeatedly) and had them go away, shrunk down, turn malignant, ...? Also, how soon do meds take effect?  I don't want to be reacting to new meds thru the holidays. 

Any thoughts anyone might want to share would be appreciated.  Thanks again for the thread.


----------



## wilkeliza

Thought I would come to this thread seeking advice. 

My family has a history of thyroid issues on my mother's side. At least two of her siblings have had surgery for their thyroid and several others are on medication. I believe my maternal grandmother has a thyroid condition but not 100% sure. A cousin who is a little older than me has just started thyroid issue treatment and now her pregnancy is considered high risk due to that. Her older sister has had thyroid surgery but not sure if that was due to her thyroid or to help another issue. 

Now that you have some history about my family I'll give you what's up with me. This past year I have gained 30 pounds. Also no matter what I do I still gain. I am going next week to get checked to see if it could be PCOS but I don't think it is that just want to make sure. I think there could be something with my thyroid. However, my yearly blood test comes back normal. If it is normal does that mean there is not a problem with my thyroid? Is there another test I should be looking out for? Most people including my doctor just say it is my metabolism slowing down and I've got to do more (I agree but all my work is not showing results) so I want to make sure I am ruling every possibility out before I agree it is just apart of getting older.


----------



## Christine

A long time ago, they used to give thyroid medication thinking it would shrink nodules.  I believe that is not something done today.  If your thyroid levels are normal, they should just watch them annually and make sure they don't grow.  If benign nodules must be removed if they start to get too large.  An annual ultrasound and measurement should be enough.

Benign nodules don't necessarily "turn" malignant; however, thyroid cancer is different from other cancers in that you could have a 1 cm nodule and only a speck of that nodule would contain cancer.  Thyroid biopsies are notoriously wrong and the only good thyroid biopsy is one where the lump is removed and checked throughout.  My friend had several nodules and all biopsies came back benign; however, she ended up having her thyroid removed anyway because the one nodule was so large.  Upon final pathology, there was a trace amount of cancer in one of the nodules.  

Not to scare you, but just watching the nodules would be what you could expect.


----------



## 4HOLIDAYS

Thank you for that info.  Well that is a little unsettling but I am glad to have the input.  I will want to discuss this with whatever dr I end up with.  I still have that lump feeling every time I swallow so its hard to ignore. 

I guess it is good if I don't need to go on meds!


----------



## Christine

4HOLIDAYS said:


> Thank you for that info.  Well that is a little unsettling but I am glad to have the input.  I will want to discuss this with whatever dr I end up with.  I still have that lump feeling every time I swallow so its hard to ignore.
> 
> I guess it is good if I don't need to go on meds!


 
Yeah I always hate breaking that news but, with your health, it's just better to know the truth.  Just monitor the nodules.  Even benign nodules can be troublesome if they get too big.


----------



## 3DisneyBuggs

It looks like Im joining the thyroid meds club. Ive been following a nodule for 2 years now when I swiched endos. My original Dr didnt seem too concerned about my thyroid antibodies and was lax in bloodwork. My new Dr confirmed I have Hashimotos and did a whole battery of blood tests. I had an appointment today and the latest blodwork shows my TSH doubled- it's at the highest end of normal . I am also Vitamin D deficient. So he started me on Synthyroid and wants me ti take Vit D calcium and magnesium. In 3 months he will check the bloodwork and nodule and possible have a 3rd FNA, using his pathologist. I do have hypo symtoms tired,cold, dry flaky skin and my hair is always shedding. I hope rhe meds help.


----------



## Christine

3DisneyBuggs said:


> It looks like Im joining the thyroid meds club. Ive been following a nodule for 2 years now when I swiched endos. My original Dr didnt seem too concerned about my thyroid antibodies and was lax in bloodwork. My new Dr confirmed I have Hashimotos and did a whole battery of blood tests. I had an appointment today and the latest blodwork shows my TSH doubled- it's at the highest end of normal . I am also Vitamin D deficient. So he started me on Synthyroid and wants me ti take Vit D calcium and magnesium. In 3 months he will check the bloodwork and nodule and possible have a 3rd FNA, using his pathologist. I do have hypo symtoms tired,cold, dry flaky skin and my hair is always shedding. I hope rhe meds help.



They should help, as well as the Vitamin D supplementation.  I've got the deficiency also (I think just about everyone I know has a deficiency).  It takes a while for that level to increase though.  If your symptoms are due to your thyroid being "off" you should actually start to be drastically improved within about 6 weeks (doesn't sound like you are horribly hypo).  Be wary though that too much thyroid medication side effects can make you feel odd too and, strangely enough, tired.


----------



## luvmarypoppins

I will have to catch up and read the thread.

I have been fighting this cold/cough thing for 3 weeks, thanks ds3 for sharing the love, lol.

Just wanted to wish you all a Happy Thanksgiving.

Hopefully we will be going to Disney Dec. 14-18 or near there.

When are you going Squeegee and Singing Mom. We will probably stay at the Swan as usual.


----------



## squeegee

luvmarypoppins said:


> I will have to catch up and read the thread.
> 
> I have been fighting this cold/cough thing for 3 weeks, thanks ds3 for sharing the love, lol.
> 
> Just wanted to wish you all a Happy Thanksgiving.
> 
> Hopefully we will be going to Disney Dec. 14-18 or near there.
> 
> When are you going Squeegee and Singing Mom. We will probably stay at the Swan as usual.



We're heading out two weeks from today, for the 8th-18th. It's surreal. I booked it at 499 days out, and have been "planning" since about 2010. Now I've got 14 days. Lol. 

I've been running through the gauntlet of doctor appointments lately, from having some veins ablated, to the surgeon's follow up on the neck dissection, then my Gyn, my Endo, and next my GP. It's crazy, but I'll have it all through with a couple days before we go. Then it will be out of the way for six more months. Lol. 

Happy thanksgiving to you, too!


----------



## SingingMom

Happy Thanksgiving to all!  One of DD's coworkers is from Australia and was given Thanksgiving off.  She offered to switch with DD's Wednesday off, since she doesn't celebrate the holiday.  Very nice of her!  So, DD ordered a turkey from Publix and a few of the roommates are going to celebrate together.  
DH and I are going to my sister's home for a quiet, lowkey dinner.  Still hard to believe my niece passed away this month.  I'm going to try to help her with some of the thank you notes this week. 

We'll be in Disney for Christmas this year - Thanksgiving is one thing - but I can't be away from my baby on CHRISTMAS!   We'll be staying at POFQ.  I'm returning at the end of January (thank heavens for JetBlue points!) for 5 nights.  DD was able to get a cast member discount at Beach Club. 

Bloodwork today in preparation for my annual endocrinologist appointment Monday.  Hopefully no surprises!


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## macraven

_hope all have a very nice thanksgiving!

we are in the process of packing for a move to another state.
it's going to be great for us!
average snow fall for the year is about 3.5 inches while where we are now, we get plenty of snow and sub temps each winter.

i plan on either dominos or the local Chinese take out place for thursday....
we like both places so mr mac will flip a coin to see where dinner will come from on Tday._


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## luvmarypoppins

squeegee said:


> We're heading out two weeks from today, for the 8th-18th. It's surreal. I booked it at 499 days out, and have been "planning" since about 2010. Now I've got 14 days. Lol.
> 
> I've been running through the gauntlet of doctor appointments lately, from having some veins ablated, to the surgeon's follow up on the neck dissection, then my Gyn, my Endo, and next my GP. It's crazy, but I'll have it all through with a couple days before we go. Then it will be out of the way for six more months. Lol.
> 
> Happy thanksgiving to you, too!



Squegee - I am sure you are beyond excited right now. I just booked our trip today. Fastest trip I ever booked with most of it done. Ds3 is coming with us most of the trip. I will have my own personal nurse , lol. He begged some nurses to switch shifts.  We are staying at the Swan 12-13 12/19. I got the candlelight for 12/14. Tomm. I will order the MVMCP tickets for the 15th. Got some decent adrs even though its last minute and ds is sometimes picky so I got Rose and Crown, Kona, LTT lunch, Chefs so far. 

Maybe we will run into each other. Watch for the crazy lady pushing the wheelchair or the young handsome guy pushing it lol.


----------



## luvmarypoppins

I also went to the hematologist yest and actually saw him. His english is not the best. He said I dont have any of the clotting factors that cause blood clots and they have to keep watching some level now that I am off the xarelto, it was too low and now its up and they have to test it again next month and I got a B12 shot so I should have energy to walk around disney lol.


----------



## squeegee

luvmarypoppins said:


> Squegee - I am sure you are beyond excited right now. I just booked our trip today. Fastest trip I ever booked with most of it done. Ds3 is coming with us most of the trip. I will have my own personal nurse , lol. He begged some nurses to switch shifts.  We are staying at the Swan 12-13 12/19. I got the candlelight for 12/14. Tomm. I will order the MVMCP tickets for the 15th. Got some decent adrs even though its last minute and ds is sometimes picky so I got Rose and Crown, Kona, LTT lunch, Chefs so far.
> 
> Maybe we will run into each other. Watch for the crazy lady pushing the wheelchair or the young handsome guy pushing it lol.



I'll keep my eyes open. 

Spent all day yesterday packing. It was quite a different experience from packing for trips pre-DD. Used to be, DH and I could fit everything we needed in one carry-on. Now, we have five checked bags and a carry-on. Lol. Her costumes took an entire 29" spinner by themselves. Her snacks took another 21" spinner (two weeks' supply of juices and assorted fruit snacks).
It's crazy how much stuff we have to take now, "just in case" with a kid. 

I saw my endo Friday, too, and for good news for once - the ultrasound is clear, no lymph nodes! And bloodwork is good, but since I'm symptomatic on the 125 tirosint now, he's dropping me to 112.  hopefully that will make a difference in how I actually feel.


----------



## macraven

squeegee said:


> I'll keep my eyes open.
> 
> Spent all day yesterday packing. It was quite a different experience from packing for trips pre-DD. Used to be, DH and I could fit everything we needed in one carry-on. Now, we have five checked bags and a carry-on. Lol. Her costumes took an entire 29" spinner by themselves. Her snacks took another 21" spinner (two weeks' supply of juices and assorted fruit snacks).
> It's crazy how much stuff we have to take now, "just in case" with a kid.
> 
> I saw my endo Friday, too, and for good news for once - the ultrasound is clear, no lymph nodes! And bloodwork is good, but since I'm symptomatic on the 125 tirosint now, he's dropping me to 112.  hopefully that will make a difference in how I actually feel.


Hope you have a smooth trip
It is more work traveling with children 
Glad your thyroid condition has improved


----------



## SingingMom

Must be the month for Endocrinologist visits  lol   I went last Monday.  Increasing my synthroid a bit.  It's amazing how, 23 years later, we are still adjusting! 
Wish I could lose the 20 lbs I gained on Lexapro two years ago.  Just won't come off.  (of course, I refuse to cut out carbs.  lol) Everything else seems good.
Cardiologist appointment will be next.  She'll yell at me that the 20 lbs are still there.  (she's a runner and weighs about 90 lbs. The nerve )

Heading to Disney for Christmas.  Still waiting for DD's work schedule, so we know if we can see her more than "in passing"!


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## luvmarypoppins

squeegee - I am glad your reports were great

singing mom - how much was your dosage change. Just wondering as when mine was changed she only had me take 1 extra pill on sundays. My endo said the older you get its harder for your body to absorb the synthroid??

macraven - how is the packing going?

Christine - reading anything good?  I am happy to report I have 1 more book left to meet my goodreads goal of 50 books this year, granted some were childrens books but I always write a review of all the books I read since I get them free from the authors and win lots of them. A few I won lately were signed no less!. I just won four more this week, not from goodreads. One is from Emily March.  have never read any of her books so I am looking forward to it.

Well I am taking a trip planning break right now. Today I just had to make 5 more reservations, 2 for the towncar since ds is coming back by himself, got the wheelchair and then I had to get the MVMCP tickets and renew dh annual pass. OMG!! Sticker shock for the AP.  I just got in under the wire before the price increase for mine, like days before and I didnt even know it of course before they announced it. Oh well, at least dh comes with memory maker now.


----------



## SingingMom

I was 100 mcg six days and half pill one day.  She changed it to 112 mcg six days and half pill one day.  @@

DD and one of her fellow housing mates decided to get an offsite apartment together for their extentions, with the hope/plan of being offered a permanent job after May.  Hard to help with the arrangements from long distance.  Good thing we are going for Christmas so we can get her some furniture etc.  Since I don't know her work schedule yet, I haven't really made many dining reservations and no fast passes.  Personally, aside from showing DH Osborne Family Lights and how pretty the fireworks are at MK, we might not really worry about too much more.


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## Christine

Singing Mom - that's a pretty good dosage change.  Were you really getting "low" (or should I say "high"?)?  Usually when I get dosage changes they are really small at first.  My most recent change though, was .137 5 days a week, 1/2 of that on day 6, and nothing on day 7.  My doc then switched me to 100 mcg all 7 days.  Instead of getting .107 mcg average, I'm now doing the even .100 mcg per day.  I was having hyper symptoms and it was aggravating my menopause symptoms.  Unfortunately, on this slightly lower dose, I swear I am picking up weight easier.  I don't have an appointment until February to see how it's going.

LMP - I'm not really reading anything great.  I haven't had any noteworthy books this year.  I don't think I'll make my goal of 50 books though.


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## danny1649

*Fellow Diser i DID NOT WANT YOU TO THINK i WAS NOT RESPONDING FOR LACK OF INTEREST. . bUT  A LACK OF KNOWLEDGE E ON SUBJECT IS WHY i  don't reply.   i DO WISH YOU ALL EHE BEST      danny*


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## macraven

Hi Danny, happy you dropped in here

I read threads about medical issues so I can learn more.
But I usually post in the ones that I suffer from 

I have had thyroid issues for 29 years and enjoy this thread as I want to know how treatment has changed/improved now

Come join us anytime you wish

Hope you are doing better


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## luvmarypoppins

Hi Danny - pop in anytime

Well its the last full day of our trip. Dh and I are taking a break from ds3. He is on a plane now back to work tonight.  He ran us ragged. Glad he helped push me when need be, his need be was alot because he said I LKl too slow and he wanted to get places etc. 

Its more crowded than I thought it would be. The weather is crazy warm except today its raining. 

Best was I got to meet up with snappy (Laurie) from the Breast Cancer Thread on the Comm. Board. She is here with her dd from college.


----------



## AllisonK

I haven't posted her in a few months, but I am still trying to get my dose regulated and it's so frustrating. I gained a total of 16 pounds between June and October and have been on 3 different dosages since my surgery (100, 150 and currently on 137 with two pills on Saturdays). My TSH was 31.9 on the 100 (yes, 31.9....) so my endo bumped me up to 150 and my TSH went down to .8. I felt awesome and less bloated and tired but my PCP thought .8 was low (my PCP and endo are part of the same group so they can both see my lab work) and bumped me down to 137... turns out the endo thought .8 was optimal for me (he wants my TSH under 1) and thought I should never have been bumped down to 137... so now I am taking the two pills on Saturdays to see if the 137 can get my TSH back under 1... if not I will most likely go back up to 150. I just had my blood drawn Thursday so hopefully I will have my results back soon... I am still tired on the 137 but I am slowly losing the weight again. (I had lost 80 prior to my surgery as I was overweight in my teens/early 20s and had kept the 80 off for a year at that point and was down to a healthy 145 lbs, so gaining 16 so quickly felt like such a failure even though I know it was completely out of my control because my TSH was so high...)


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## Christine

Allison,

At least it looks like you are heading in the right direction.  It's a shame you got pulled off the .150. A TSH of .8 is fine.  I guess, though, for people who *don't* have thyroid cancer, they'd rather see you at around 1-2, but 0.8 is close enough.  PCPs aren't well on board with endocrinological things.  Are they also running a Free T4 and T3 when they do your labwork?


----------



## luvmarypoppins

Just popping in to wish you all a very Merry Christmas to those who celebrate and a Happy and Healthy New year to all!!!

Allison - I am sure its frustrating. Its like a guessing game to try and get the right dosage, but once you get to it, it will be great and you will feel great!! Hang in there!

Macraven - are you in your new place yet??

Squeegee - you need to tell us about your trip!!!

singing mom - I know you mentioned a friend or room mate of your dd who is a cp cm from Australia. Just wondering if she works at Its Tough To Be a Bug. We met the sweetest girl from Australia there.   

Christine - I finally found out where dh was. The 2nd most important place in the area, wowsa! is all I can say.  I made my goodreads goal of 50 books.I think I will lower it to 40 or 45 this year but I am not getting a lot of childrens books to review. Hope you enjoy the hoildays with your ds and dd. I am sure you are happy to have him home for a while!

Well our trip was great. Loved the weather, saw Osborne light for the last time in the rain, saw all the parades and fireworks. The star wars fireworks were awesome, Dh and I watched them from the room due to my stomach issues again. Hmm, I hear the gastro calling my name, lol! Nexium doesnt work for me, so we will see what he will say. 

I thought Meridith Viera did a good job at the candlelight processional. She only made one mistake. MVMCP was crowded but we had a good time. It was too hot to drink hot chocolate. Ds2 got to say hi to his friend at the AK. Shew trains the custodians. 

We had pizza and went to see Star Wars last night for ds1 b day. Its the only time we all could get together. 

I volunteered to cook sausage and a pasta dish for ds3 to take to work for the nurses tomm. night. I will be busy. Plus we have to be at church at 6pm. 

Check in when you are not busy.


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## SingingMom

Merry Christmas from the happiest place on earth!  Having a lovely time with DD. Moved her into her new apartment. Went to Christmas Eve 6 pm mass at the Basilica.  Not getting any time to relax because DD has us hopping. lol. Tomorrow she works, so after lunch DH and I may peek in on her at MK, then come back and sit by the pool. The weather has been HOT and muggy!  Not looking forward to leaving my girl Tuesday, but I'll be back at the end of January. Gotta love frequent flyer points!!


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## luvmarypoppins

singing mom - so glad to hear you and your dh are having a wonderful time with your dd. Pool time sounds great too. We were just too busy like you running around to enjoy it while we were there.

You are brave to put up with the crowds. Its great to use the ff miles for sure.I did it for 2 days free at the Swan last trip. 

Well my head is spinning with our new ins. plan that starts Jan. lst. The number 1 frustrating thing right now is the prescription plan they have.
It says you can get the 3 month supply at CVS and save one co pay. It says your dr. must write all new scripts out for a 3 month supply etc. I looked at all my meds this morning. I am going to try and squeeze one more synthroid 30 day refill out of the old plan.

I just feel this will be confusing and the dr.  wont like doing it and I am thinking I should just make a little trip to the endo office so they can photocopy my new card, show them the new plan rules etc. I have enough supply till mid Jan. for everything I think.


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## Christine

I have the CVS thing and I love it.  I get my 90 day supply on everything and no more mail order.  It's so much more convenient and I don't have to worry about the heat with some of the medications.


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## luvmarypoppins

Oh gheesh, this prescription stuff just keeps getting better. I did get 2 more refills from the old plan and then I asked them why my vitamin d script was filled for only 4 pills (once a week) instead of the new dose (twice a week).

The tech tells me on the phone - oh your company (old one) thinks it too much of a dose and wont give it to you, what?????

I did read with the new plan that some meds the dr. may have to justify the use to the ins. company first, oh what fun.

So then I ask the tech - well how much will it cost me if I pay for the 8 pills myself and she says $14.09. That might be worth my sanity at this point I think. 

Best christmas present - ds1 was told they will hire him full time in Feb. A miracle after looking for the job for 9 months and they hired him part time in the fall. 

Worst gift - ds2 paid us a debt he owed, I said this is not a gift, this is a debt you owed us, so he is on my very, very naughty list. He is already banned from any disney trip with us as he ruined it when he was there before. Ds3 unfortunately is going to be added to the list I think. His unkind comments just stress me out and I want to enjoy the vacation. 

I am going to do a little math calculation as one of dh airlines is running a special to buy miles. I will see what an average room will cost versus buying the miles and the bonus and see what works out better financially. I looked at the Passholder rates for the Yacht Club for our next trip probably in May and they are ridiculous, like $335 and I think that is without taxes. I might spring for 2 nights there just because I love the pool but their prices are getting out of control for sure. 

Found out over christmas that dh aunt died. His uncle didnt bother to tell us as he almost died himself and was depressed. I felt bad. My boys met her and liked her. She was 91. And one of my best friends from hs just emailed me that her dh died. Dont know if we will go to the funeral as I dont know what state it will be yet. Also found out when doing the christmas cards that another aunt of dh died too and they didnt tell us. We werent close with them anyway. I am getting weary of all of this right now. Need some happy stuff for sure.


----------



## macraven

Happy New Year everyone

Am moved into our new place in Georgia and in the process of unpacking boxes and buying furnishings for the house 

It is going to take us two months to get the house in order

Next week having two rooms flooring replaced so house will be a mess until that is completed

Fridge in the house broke down last Saturday so we are eating out still

Went to buy one the night it broke down and expecting delivery on it tomorrow 

On the way to our new house we were in an accident
7 miles from the house this happened

Worse issue presently is trying to find an endo as in a month from now, will be out of my meds

That is what is going on in my world so far

But do have to say, everything we have gone through is worth it for the move South.......


----------



## Christine

macraven said:


> Happy New Year everyone
> 
> Am moved into our new place in Georgia and in the process of unpacking boxes and buying furnishings for the house
> 
> It is going to take us two months to get the house in order
> 
> Next week having two rooms flooring replaced so house will be a mess until that is completed
> 
> Fridge in the house broke down last Saturday so we are eating out still
> 
> Went to buy one the night it broke down and expecting delivery on it tomorrow
> 
> On the way to our new house we were in an accident
> 7 miles from the house this happened
> 
> Worse issue presently is trying to find an endo as in a month from now, will be out of my meds
> 
> That is what is going on in my world so far
> 
> But do have to say, everything we have gone through is worth it for the move South.......




Wow, sounds like a lot of stress, but good stress since this is what you wanted to do!!

Good luck on the endo search!


----------



## macraven

Christine, the stress is worth it due to the weather we will have for the rest of our lives!

We could not take the cold and snowy weather winters anymore

We all were tired of shoveling snow period........ Lol. 
We could still get some in Georgia but not that much of it  
And we will always have milk, bread and eggs in the fridge if we do....


----------



## SingingMom

macraven said:


> Christine, the stress is worth it due to the weather we will have for the rest of our lives!
> 
> We could not take the cold and snowy weather winters anymore
> 
> We all were tired of shoveling snow period........ Lol.
> We could still get some in Georgia but not that much of it
> And we will always have milk, bread and eggs in the fridge if we do....


.....IF you have a fridge....    LOL


----------



## macraven

Fridge arrived and set up last night 

Eggs and milk now in it

WOOT


----------



## AllisonK

luvmarypoppins said:


> Allison - I am sure its frustrating. Its like a guessing game to try and get the right dosage, but once you get to it, it will be great and you will feel great!! Hang in there!
> 
> 
> Christine said:
> 
> 
> 
> Allison,
> 
> At least it looks like you are heading in the right direction.  It's a shame you got pulled off the .150. A TSH of .8 is fine.  I guess, though, for people who *don't* have thyroid cancer, they'd rather see you at around 1-2, but 0.8 is close enough.  PCPs aren't well on board with endocrinological things.  Are they also running a Free T4 and T3 when they do your labwork?
Click to expand...


Thanks! I believe they are testing my Free T4 and T3 as well. I went for blood work on Dec. 18 and got a call early this week that my TSH was .1, so they had me stop taking the two pills (.137) on Saturdays. It is still very frustrating! I crashed on the couch at 9:30 last night and slept until 8:30 this morning, so I am still having energy crashes by the end of the week.

But, I found out yesterday I passed my English MTEL, which is the Massachusetts teaching licensure test. I went to college for journalism and after working in the field for a few years (and then trying out marketing... SO not for me... I am not the pushy sales type), I started substitute teaching last spring at the high school my mom taught at for the last 29 years (she retired last September). I always had intended to teach until about 10th grade or so, when I took a journalism class at school. After working at a newspaper for three years I saw no possibility for moving forward and I felt stuck. Last summer I made the decision to pursue my teaching credentials. I took the Communications and Literacy MTELs in August and passed those, and took a prep class in October for the English MTEL. I figured the prep class would be helpful as I wasn't an English major in college. It helped! I took the test December 1, and, although I didn't feel very confident, I got the email last night with my score report and I passed! I can now apply for my preliminary license and will be able to be admitted into the post-baccalaureate teaching program at one of the nearby state universities. I have to take two more literature courses (American and world, I took British literature as an undergraduate) and a linguistics course (it's kind of odd that I wasn't required to take one as a journalism major), so I am taking world lit and linguistics this semester and will take American lit over the summer and hopefully start the teaching program in the fall!


----------



## macraven

congrats allison on passing that test.

you have a bright future ahead of you.

it's a better life when you can work in a field that you love.


----------



## luvmarypoppins

macraven - how is the house coming along? I hope you find a great endo. When we first moved and we were looking at a house to rent I was smart and asked the owner who her pediatrician was as I saw she had kids. So funny because the new one in the group became our really good friends and went to our church too. 
Also hope that you are recovering from the accident.

Allison - congrats on the test! Sounds like you have found a great path. Also hope the med dose is working out for you.

Christine - hope you are doing well. My Goodreads goal for this year is 45 books and so far I read 3. 

Squegee - what was the highlight of your trip?"

Went to the hematologist today. Didnt even see him, only the np. They said my iron level is slowly coming up and I got a B12 shot. Dh and I were talking and wondering if we should go there again. They dont do much and I can go to the regular pcp and get the stuff done cheaper. 

Poor ds1 is having alot of hip problems. He needs to go to the dr. Ds3 has applied for the masters program for adult family nurse practicner. He said 400 people applied and 200 got interviews. He said his interview was with a group of 6 people and they were all only asked the same 2 questions. They said they will only accept 80 students and they should know sometime in March. Also in March hopefully ds will be on the day shift, so that will make him happy. 

Next month I have the sono an blood tests to get ready for the endo. 

And no snow here all winter, yeah!1 Its a dream come true for sure!!!

Check in when you can.


----------



## luvmarypoppins

singing mom - I am sure you are looking forward to your trip to see your dd. Hope you have good weather.


----------



## Christine

LMP--thanks for checking in!

I've set my DIS reading goal of 50 again.  I probably won't make it.  I was doing well the first 2 weeks of the month since I had a lot of time off work but now that I'm back full-time, I can see my reading progress has slowed to a snail's pace again.  There's only so many hours in the day!

Good luck to your son on the NP program!

My endo appointment is on February 3rd.  I've starting watching my food intake.  I've definitely gained weight.  I think 90% of it is my fault and maybe 10% is due to being on a lower dose of Synthroid.  I'm going to give it a good effort the next 3 weeks and see if the weight will budge.  If it does not, it could be time to increase it slightly.  

My menopause hot flashes are still ongoing.  They backed off a little bit but in the last 2 weeks they seem like they are strong again.  That's really the only menopause related symptom I can complain about.  If it wasn't for them, I'd feel perfectly fine.


----------



## macraven

LMP
hooray for DS3
oh no for DS1

hopeful for both to have successful news soon

i'm so far behind in the real world, don't know where to begin.
and i'm sorry i have not been posting on here regularly.

somedays i don't know where to begin as i'm lagging in getting organized with all i need to do.

have completed the things that had deadlines but all else way behind.

had to get a Ga drivers license before the end of the 30 day period of moving here came up.
well, Mr Mac and myself did get in under the wire on the 29th day .....
then to have our car insurance transferred to an agent in this state.
after that, car plates.

this took up hours of one day.
each step followed by the next for car processing, etc

was shocked on how expensive it is to transfer this all in Ga.
plates/title ended up costing us over $2400. and that is with the $53. charge of using a cc to pay for it all.
unbelievable....
but, in the long run, we do think it was worth it to make this move.

still trying to find furniture we need and other furnishings for the house.
some furniture that was ordered came damaged so another wait is in play.
flooring installer comes in another week and will be glad for that to get done.
all the wood is in boxes in the dining room so we just walk around it......
wood was delivered day after christmas time but the installer had no openings until later in January.

my one hurdle now is finding doctors and dentist and car mechanic.

i swear, i never knew it would take this long to set up a house 
of course, we lived in our last house for 30 years plus so my experience of constant moving was long over after we did buy one back in the stone ages.

Chrinstine, I wish you the best with the dosage change of medicine.
i know how hard that is on you.
some months before our move, my dosage was changed 3 times/every 6 weeks.
but it sounds like you need a higher dosage by what you have mentioned on how you are feeling at this point.

if i can't find an endo by end of feb, i will be calling my old one in chicago and beg for a script i can use for synthroid.
i'll be completely out of all and any meds by that time period.

hope this new year will be a great one for all of you.
so far i have avoided any snow so i know it will be a good year for me.


----------



## SingingMom

luvmarypoppins said:


> singing mom - I am sure you are looking forward to your trip to see your dd. Hope you have good weather.



I am! Miss her like crazy!  She's doing very well, so we are very happy for her. Her apartment is adorable and she gets along well with her roommate.   Hubby and I are enjoying our "couple time", but we both miss her - especially her wit & humor.
  I'm lucky that we text several times a day, so I'm still involved with her daily life.  She was able to take a few days off while I visit, so we will have fun.  She's coming home in March to surprise my niece, who has the lead in her high school's spring musical and then we'll go to see "She Loves Me" on Broadway.  I think she misses NYC more than she misses Mom & Dad! 

Hope everyone is feeling well.  I have yearly followup with my internist this week and repeat bloodwork for the endo to see if the new synthroid dosage is good.  Never ending, huh?!


----------



## luvmarypoppins

Christine - how is your weather?

singing mom - with this snow coming I bet you wish you were on the plane now! When you said Broadway my ds2 told us that his girlfriend bought them tickets to go on sat. for his b day. I dont know how they will ever get there. She wouldnt say what they are supposed to see. I dont know if she could exchange the tickets for another time etc. 

macraven - how is the endo search and the script stuff coming along? Did you look at any reviews on healthgrades etc?

Well I sent dh to the pharmacy. I hate going out in the cold at night. Of course the wonderful new plan wont pay for one med - its the vitamin pill from the hematologist. Then I had to have him argue with them since I already did on the phone to no avail about them filling the wrong old script for my vit d which she doubled the dose. They finally found the new script and filled it correctly this time after our insistence they look for the new order etc. 

Now with all this bad weather I am gong to look into the three month thing and especially at vacation time too, guess it could come in handy. 

We are getting ready for the storm here. Glad ds3 does not have to work at the hosp. this week end. We might go out for ds2 b day dinner tomm. before the storm and messy roads etc.


----------



## Christine

Just in waiting mode now.  We are set for 18-24 inches the last report said.  Can I admit that I'm a little scared?  I *really* don't want to lose power.  Historically, we have never had much of a problem as the majority of our lines are underground, but besides the heavy snow, we are supposed to get severe winds.  I think I can deal with anything but a loss of power for an extended period of time.


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## macraven

Hope you survive this snowfall that looks like will be hitting your area. 

One of my sons lives in the school area so I have been watching it


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## SingingMom

My flight leaves first thing Monday morning. I'm praying everything is cleaned up by then! I miss my girl!


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## macraven

Crossing my fingers you will get that flight on Monday!


----------



## macraven

Christine, loss of power during any storm is miserable 
My son in the school area has been sending me pictures......
As if I don't remember what the streets look like during a snow storm

I suffered through many power failures  so Ido understand your concerns
Hope you don't lose any power


----------



## Christine

So far, so good.  No loss of power but the winds have been ferocious over the last 4 hours.  They keep telling us it is going to end around 7-10PM.


----------



## luvmarypoppins

singing mom - have a great trip. So wonderful you are leaving all this snow behind for sure. 

Christine - saw your snow pictures. What was your total?

We had 18 inches of snow I think. The 3ds and dh cleared the driveway. It took all of them and the snowblower over 3 hours, that was the cars too. Ds1 went to visit a friend in the hospital. He said our main road in the development is terrible as well as another road we use alot but the main roads are fine. 

Lets just say after this weekend I really want an empty nest for sure. I so value peace and quiet. I am sure ds3 made my blood pressure go up but I dont want him taking it. I need him to be as far away from me as possible. 

I did manage to read a book and I enjoyed Texas Roadhouse for ds b day dinner. Too bad its so far away from our house.


----------



## MommaoffherRocker

I just came across this thread and wanted to say Hi, we just found out DS  9 has an over active Thyroid. His growth has slowed down and they became concerned so they tested him for a bunch of things and everything else was normal except his thyroid. I am waiting for the endocrinologist to call me back to get an appointment and I am getting anxious reading horror stories on the Internet.


----------



## Christine

MommaoffherRocker said:


> I just came across this thread and wanted to say Hi, we just found out DS  9 has an over active Thyroid. His growth has slowed down and they became concerned so they tested him for a bunch of things and everything else was normal except his thyroid. I am waiting for the endocrinologist to call me back to get an appointment and I am getting anxious reading horror stories on the Internet.




What sort of horror stories?  Probably best to stay away (although it is good to educate yourself).  Remember, the internet is the only place where a hangnail could possibly kill you!


----------



## Christine

luvmarypoppins said:


> Christine - saw your snow pictures. What was your total?



We ended up with about 26 inches.  Cleanup is ongoing and government was shut down today.  I think it will open tomorrow as the subway seems to be almost at 100% now (I think).  Commute will probably be nasty on local roads though.  Lots of water that will, for sure, freeze tonight and you're just driving along and you lose a lane.


----------



## macraven

Stay safe


----------



## MommaoffherRocker

Christine said:


> What sort of horror stories?  Probably best to stay away (although it is good to educate yourself).  Remember, the internet is the only place where a hangnail could possibly kill you!


you're probably right, I need to stay away from the internet! I was coming across stories of misdiagnosis and medications with bad side effects.  Once we find out what the endo has to say I think then I will do more research. He has an appt. on wednesday to see what steps to take next.


----------



## Christine

MommaoffherRocker said:


> you're probably right, I need to stay away from the internet! I was coming across stories of misdiagnosis and medications with bad side effects.  Once we find out what the endo has to say I think then I will do more research. He has an appt. on wednesday to see what steps to take next.



Let us know how that goes. I wonder just how "over active" it is?


----------



## MommaoffherRocker

Christine said:


> Let us know how that goes. I wonder just how "over active" it is?


I wonder that myself, it was his pediatrician that used those terms and they said they don't deal with it and just referred us on. I will let you know the outcome Wednesday.


----------



## luvmarypoppins

Welcome momofftherocker

Wishing your son all the best tomm.


----------



## MommaoffherRocker

So we went to the endo and she thought it was crazy we were there, she said his growth did slow but still within a normal range and she also said the test that came back elevated was just slightly elevated and if they tested him again it could be normal now. So they are testing for antibodies now just to be sure their isn't a problem. I'm happy that there seems to be nothing serious wrong with him but man that doctor gave us a scare.


----------



## macraven

I'm glad you were able to get the news so quickly !

What a relief to learn he is okay


----------



## Christine

MommaoffherRocker said:


> So we went to the endo and she thought it was crazy we were there, she said his growth did slow but still within a normal range and she also said the test that came back elevated was just slightly elevated and if they tested him again it could be normal now. So they are testing for antibodies now just to be sure their isn't a problem. I'm happy that there seems to be nothing serious wrong with him but man that doctor gave us a scare.




Oh, such good news.  I'm glad the endo seems to be on the ball and, I definitely agree with the antibody tests.  Hopefully everything will be normal (and even if it's not, it's all treatable).


----------



## luvmarypoppins

MommaofftheRocker - glad to hear things went well for your son. Its good your ds is getting the other tests too. Sounds like the dr. is very thorough. 

A new name I just read about:  Daniel Norris of the Detroit Tigers. MLB has a little article about him and thyroid cancer. I am glad as any press brings more awareness.   Interesting he went to MSK (NY center) and said they only took out half his thyroid. 

Its a special day tomm...can you all guess what it is???


----------



## luvmarypoppins

What, what is this lol, yes its my special day, today is my 7 year cancerversary!! God is so good for sure. From almost dying and being in the coma to still being here. Dh said - why are we celebrating this, wth??? Well he is taking me out for dinner tonight only he doesnt know it yet. But I know he will be fine with it. 

I told ds3, yeah and now you are working at the place where I almost died, hmm.

And in the more good news dept. ds3 told me last night that he is officially going on days the end of March, So happy!! 

And in the sad news dept. my cousin told me that his step brother , my cousin died. I really didnt know him well but know his twin sister. Our family is not close sad to say. He was younger than me and had a stroke. He had 4 kids, 7 grandkids and a great grand child. Wow. 

Well in the next few weeks I will be having blood tests and the sono to get ready for the endo appt. 

Have a great week end everyone!


----------



## macraven

Happy day for LMP

Have a great celebration today!


----------



## Christine

Congrats LMP!!  Enjoy your dinner.


----------



## SingingMom

Back from my visit with my DD.  Stayed at Beach Club - room was lovely, but I prefer Yacht Club.  Just too spread out to get to the transportation, etc.  Was very thrilled to leave the 30 inches of snow!!  Weather was great Monday & Tuesday, Wednesday was rainy but we spent it doing errands for DD's new apartment.  Thursday was miserable.  It poured and poured.  We did make it around the World Showcase, but threw the towel after that!  Later we had dinner reservations at Narcoosee's to meet her friend, and the weather cleared, so we were able to watch Wishes from the restaurant's porch.   Friday & Saturday were much better.  Flight home was late and I didn't land until 1am.  God bless DH, he was waiting at the airport with a smile on his face.  Next time we see DD will be for a long weekend in March - she's flying home to get her Broadway/NYC fix..  lol

Had regular bloodwork done - still have to get my thyroid levels checked.  I have a call in to my internist - she called while I was away and left message that my cholesterol was too high and I have to start Lipitor.  I have to talk to her about that, since during my visit she said it was last resort.  Guess my level was bad.  I think its hereditary, my brother has the same trouble.  My food choices aren't typically high cholesterol -  rarely eat red meat, hardly ever eat eggs, don't add butter... not sure what I can change yet.

Back to the laundry - and then to plan my next visit to see DD!


----------



## Christine

Just got back from my twice-a-year endo appointment.  Bad news:  the lab that was down the hall from the doctor is no longer there so I'll have to add yet another stop to this stupid appiontment!  (Can you sense my frustration?).  Drove to another lab and had it done just to get it done with.  They are testing my thyroid levels (obviously), Vitamin D, thyroglobulin, and a CBC.  The doctor also gave me an order for a neck ultrasound (once very 5 years for me).

I did talk to my doctor about the recent reports that have come out about RAI therapy.  I had about a total dosage of 330 mci on a VERY low-level cancer.  He seemed bothered as to why I had so much and I told him it was the way things were in the 90s.  So my concern is for the secondary primary cancers that are apparently "statistically significant" in people who have had RAI therapy.  He told me that they mostly worry about leukemia and lymphoma.  The studies say that the risk is "double" in irradiated people but that I needed to remember that in non-irradiated people the risk is 1%.  So for me, the risk is now 2%.  He basically told me not to worry and that we would do a CBC annually.  

So that appointment is done for 6 monhts.  I just need to make the ultrasound appointment and wait for the lab results.

It feels so good to have it over with, mostly.


----------



## SingingMom

Christine said:


> Just got back from my twice-a-year endo appointment.  Bad news:  the lab that was down the hall from the doctor is no longer there so I'll have to add yet another stop to this stupid appiontment!  (Can you sense my frustration?).  Drove to another lab and had it done just to get it done with.  They are testing my thyroid levels (obviously), Vitamin D, thyroglobulin, and a CBC.  The doctor also gave me an order for a neck ultrasound (once very 5 years for me).
> 
> I did talk to my doctor about the recent reports that have come out about RAI therapy.  I had about a total dosage of 330 mci on a VERY low-level cancer.  He seemed bothered as to why I had so much and I told him it was the way things were in the 90s.  So my concern is for the secondary primary cancers that are apparently "statistically significant" in people who have had RAI therapy.  He told me that they mostly worry about leukemia and lymphoma.  The studies say that the risk is "double" in irradiated people but that I needed to remember that in non-irradiated people the risk is 1%.  So for me, the risk is now 2%.  He basically told me not to worry and that we would do a CBC annually.
> 
> So that appointment is done for 6 monhts.  I just need to make the ultrasound appointment and wait for the lab results.
> 
> It feels so good to have it over with, mostly.



And, I DIDNT have the RAI therapy in 1992 and the radiologist had a hissy fit because I refused it!  He went ballistic in the middle of the hospital.  I've never met a ruder doctor in my life!  Fortunately, my endocrinologist supported my decision.  Now that's not now it would have been treated anyway.  Don't you want to scream?  I think you just have to educate yourself and try to follow the best advice that makes the most sense.   Don't worry about the statistics, Christine.  It could drive you crazy.

I have to get my thyroid labs done this week to see if the new synthroid dosage is correct.


----------



## Christine

SingingMom said:


> And, I DIDNT have the RAI therapy in 1992 and the radiologist had a hissy fit because I refused it!  He went ballistic in the middle of the hospital.  I've never met a ruder doctor in my life!  Fortunately, my endocrinologist supported my decision.  Now that's not now it would have been treated anyway.  Don't you want to scream?  I think you just have to educate yourself and try to follow the best advice that makes the most sense.   Don't worry about the statistics, Christine.  It could drive you crazy.



Yeah I always feel like I'm the wrong end of everything.


----------



## macraven

christine,


----------



## Christine

Good morning all.  Called my endo today for results.  I don't have anything in hand (that will come later when the lab posts to their site), but all is good/normal.

Thyroid levels are very stable, CBC is very good, thyroglobulin is negative.

The best news is that after supplementing each day with only 1000 mg of Vitamin D, I've gone from 24 to 35 on my Vitamin D levels.  I didn't think I'd get such a good response since I was as low as I was.  I'm pretty happy about that!  I may increase my dose of Vitamin D just to get it into a more optimal range.

Glad to have that over with!


----------



## macraven

That's very good news !


----------



## luvmarypoppins

Christine - so happy for your great test results. That was great about the Vit D. I have to take 50,000 twice a week now, gheesh.  I am sure the rai is always in the back of your mind. I didnt read the new info. What does it say? I look at it like they had to do it since mine was so aggressive and already spread and made a new tumor etc. I am still here and loving life, except when the ds drive me crazy so its all good and I thank God each day. 

macraven - Just saw your moderator status. Hmm, did I miss something. What are you the moderator of? I am sure you will do a great job and congrats!!! Did you find a new endo yet? I hope you can find one you can be comfortable with. Maybe there is a group so if you dont like one you can use another in the group. 

singing mom - glad you had a great time visiting your dd. I like the Yacht Club better too. Quieter, you get a balcony, you get on  the bus first and its closer to the boat dock etc. 

I am sick of the snow. It snowed almost a foot on friday, now 4 inches today and 2 tomm. Ds2 hurt his foot at work. He is following up with the ortho on thurs. So far the er said nothing was broken but he is limping.

I got a nice $800 bill from the lab. Seems they dont have my new ins. info so I will have to send it to them. I guess the hematologist didnt bother to do that, sigh. 

Dreaming of Flower and Garden. May cant come fast enough!


----------



## macraven

What a pain to sort out insurance issues LMP
You would think your doc included that info when he has you do the labs

Ouchie for your son
Glad no broken tootsies

Thanks for the vote of confidence on my mod job

I'm at the 4 darkside forums
Universal Orlando parks, etc, hotels, trip reports and discovery cove/sea world forums

It's a calm part of the disboards with many nice posters

I feel your pain with the snow you are having
Snow was the main reason we moved from the north to the South


----------



## Christine

luvmarypoppins said:


> Christine - so happy for your great test results. That was great about the Vit D. I have to take 50,000 twice a week now, gheesh.  I am sure the rai is always in the back of your mind. I didnt read the new info. *What does it say? *I look at it like they had to do it since mine was so aggressive and already spread and made a new tumor etc. I am still here and loving life, except when the ds drive me crazy so its all good and I thank God each day.



The data suggests that those of us that have RAI after thyroid surgery have a "statistically signifiant' risk of developing secondary cancers due to the RAI.  It seems that thyroid patients WITHOUT RAI have a higher chance too, but it is a noticeable difference if you had radiation.  This has caused the medical field to pause and decide whether it's worth it to treat less risky thyroid cancers with RAI.  In your case, I'd say it was a definite "must do."  In mind, most likely not; however, my endocrinologist said that while mine was small, I had the "multifocality" feature which makes it more tricky.

Anyway, he tried to calm me by saying that for instance for leukemia or lymphoma, the risk is double if you've had RAI.  BUT....the risk of leukemia/lymphoma is 1% in the general population so if you've had RAI, the risk is now 2%.  So it's not like it goes from 1% to 70%.  Most of the secondary cancers appear within 10 years of RAI treatment.

So I do feel better.  He said he's treated patients since 1988 and he has never had one thyroid cancer patient treated with RAI come back with second primary cancer.  So while the risk is "statistically significant" (which means it's measurable), it's very small.


----------



## SingingMom

Christine said:


> The data suggests that those of us that have RAI after thyroid surgery have a "statistically signifiant' risk of developing secondary cancers due to the RAI.  It seems that thyroid patients WITHOUT RAI have a higher chance too, but it is a noticeable difference if you had radiation.  This has caused the medical field to pause and decide whether it's worth it to treat less risky thyroid cancers with RAI.  In your case, I'd say it was a definite "must do."  In mind, most likely not; however, my endocrinologist said that while mine was small, I had the "multifocality" feature which makes it more tricky.
> 
> Anyway, he tried to calm me by saying that for instance for leukemia or lymphoma, the risk is double if you've had RAI.  BUT....the risk of leukemia/lymphoma is 1% in the general population so if you've had RAI, the risk is now 2%.  So it's not like it goes from 1% to 70%.  Most of the secondary cancers appear within 10 years of RAI treatment.
> 
> So I do feel better.  He said he's treated patients since 1988 and he has never had one thyroid cancer patient treated with RAI come back with second primary cancer.  So while the risk is "statistically significant" (which means it's measurable), it's very small.



And I think the main thing you have to embrace is that you most likely were treated with the best trends of the time.  We'll go crazy if we second guess ever decision.  And each situation is different.  You both sound like you still might be treated the RAI now, considering your circumstances.  My situation was a little different - my arrogant radiologist actually said that he only wanted to do RAI on me as an "insurance policy" - my after surgery body scan came back as "just over" the 2% that they used as their benchmark for doing RAI in 1992.  When DH & I explained that we'd take our chances, as we hadn't had children yet and didn't want the RAI in my system if it was only an "insurance policy" , but that I'd continue to be under the care of an endocrinologist to check status, the radiologist went ballistic.  How DARE I question HIM!   However, if my body scan had shown significantly over the benchmark, I am sure we would have agreed at that time.   

I guess the best rule is to be educated and understand so that you are a partner in the medical care of YOU.   (and I always add God to my medical team!    )


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## Christine

SingingMom said:


> And I think the main thing you have to embrace is that you most likely were treated with the best trends of the time.  We'll go crazy if we second guess ever decision.  And each situation is different.  You both sound like you still might be treated the RAI now, considering your circumstances.  My situation was a little different - my arrogant radiologist actually said that he only wanted to do RAI on me as an "insurance policy" - my after surgery body scan came back as "just over" the 2% that they used as their benchmark for doing RAI in 1992.  When DH & I explained that we'd take our chances, as we hadn't had children yet and didn't want the RAI in my system if it was only an "insurance policy" , but that I'd continue to be under the care of an endocrinologist to check status, the radiologist went ballistic.  How DARE I question HIM!   However, if my body scan had shown significantly over the benchmark, I am sure we would have agreed at that time.
> 
> I guess the best rule is to be educated and understand so that you are a partner in the medical care of YOU.   (and I always add God to my medical team!    )




I was told that RAI was "icing on the cake" for me.  The cake was good but the icing made it so much better.


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## luvmarypoppins

Well its been crazy here. 

So much crazy weather here last night. Felt like the house was shaking the winds were so strong. At least by the front door anyway. 

Sickness is going on here. I finally caved and had dh take me to urgent care as the regular dr. group is not there on wed. And you dont get an appt. the same day anyway. I have been miserable for 2 weeks. They said I have a sinus and ear infection so its an antibiotic for 10 days. No dairy 2 hours before or 2 hours after you take it. Oh and now with my nice new ins. that cost $50, before it was free.

Ds2 is the sickest. On top of the foot which is getting better he went to the urgent care and they tested him for strep and flu and said he had something viral. He insisted on going out to valentines dinner with his girlfriend. He could hardly eat or walk. We talked him into going to the emergency room. They have him 2 liters of fluid and said he has mono. He had spots all over like a dalmatian and of course he refused to stay home from work and rest. Now he has a cold too. No one ever stays home when they are sick where he works. They all keep getting each other sick. 

I made the appt. for the sono for next friday and will probably do the blood tests on next sat. Forward motion. I am sure I will feel better by then. My endo appt. is March 13 or 16. Somewhere around there. 

I am in desperate need of a dental apt. I didnt go because of the blood thinner and my constant bleeding gums but its going to be something bad I am sure. I have the worst teeth. They always crack etc. This will be costly I am sure. 

Check in when you can.


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## luvmarypoppins

Well I caved in and am going to the dentist tomm. I can't take the pain anymore. She said since its an emergency visit they are only going to take an xray and see what is wrong. 

Its a group and I dont know what dentist I will get. 2 of the ds have been there and said its an ok place.

Also I am wondering if this antibiotic is strong enough. I woke up this morning crying in such sinus pain, glad dh is back from Boston. I asked him to go get me 2 tylenol. If this does not improve I will go see the regular internist. 

I am sick of feeling sick, sigh.


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## luvmarypoppins

Well I am back from Doogie Howser dentist, lol. So young. He graduated from the Univ. Hosp. dental school. 

I knew it would not be good news and it wasnt. At least it is only one tooth in question. 

He said basically the tooth is dead but if I want to try and save it I would have to go to a root canal specialist who would have to use special things/procedures to try to find the root if it can be found since its hard to see on the xray and appears calcified and it seems there is an infection on top.

Then option 2,  I could go to the oral surgeon and most likely they will pull the tooth completely out and I would have a hole in my mouth until the implant is done which takes 3 months???

He said I should discuss the rai issues with him since I said what would happen etc. 

Ds2 has been to the oral surgeon and they are highly respected and well known, the group I specifically asked about before they tried to refer me to a different group. 

So decisions, decisions. I did have a root canal before and it was really painful. I am thinking should I just get it pulled and done with???


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## Christine

luvmarypoppins said:


> Well I am back from Doogie Howser dentist, lol. So young. He graduated from the Univ. Hosp. dental school.
> 
> I knew it would not be good news and it wasnt. At least it is only one tooth in question.
> 
> He said basically the tooth is dead but if I want to try and save it I would have to go to a root canal specialist who would have to use special things/procedures to try to find the root if it can be found since its hard to see on the xray and appears calcified and it seems there is an infection on top.
> 
> Then option 2,  I could go to the oral surgeon and most likely they will pull the tooth completely out and I would have a hole in my mouth until the implant is done which takes 3 months???
> 
> He said I should discuss the rai issues with him since I said what would happen etc.
> 
> Ds2 has been to the oral surgeon and they are highly respected and well known, the group I specifically asked about before they tried to refer me to a different group.
> 
> So decisions, decisions. I did have a root canal before and it was really painful. I am thinking should I just get it pulled and done with???



I would probably consult with the root canal specialist before I made that decision.  My friend had to have one done and went to the specialist and apparently it was a fantastic experience.  I would do that before deciding on losing a tooth.


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## SingingMom

I had a root canal and ended up having to have a dental implant two years later.  The implant procedure is very long and drawn out.  It was a very annoying experience, to say the least!   Mine included some bone grafting, which was painful.  The root canal was a breeze.  Too bad that didn't take care of it.

My bloodwork came back where she wanted it, so endocrinologist is keeping me at the current level of synthroid.  My internist did not like my cholesterol, so now i'm on Lipitor.  Since my diet really isn't cholesterol high, she feels it is hereditary.  Hopefully this will take care of that.  I feel too young to have to use this dang daily pill box!  lol

DD is coming home for a quick visit next week, and then I'm flying back with her to spend a few days at POFQ.  DH and I have a week planned at the end of April - four nights in Tampa area on the beach and four nights to see DD, staying at Animal Kingdom Lodge.  I find I can deal with DD being in Florida as long as I have one trip always planned for the future before the last one is finished.  LOL


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## macraven

I've had 3 root canals and one extraction

Would do the root canals again if needed

The molar that was pulled was because it cracked and part fell out
I went with a bridge for it
Cheaper and not time consuming

My husband had the dental implant when his molar was pulled and it took one year, lots of money and a lot of visits

I vote for the extraction


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## macraven

singing mom, glad your thyroid level stayed acceptable


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## luvmarypoppins

singing mom - happy for you that your levels are good and hope you enjoy your visit with your dd

OK my thyroid peeps, we have some special guests here tonight, Anna, Elsa come join us...queue music...For the first time in forever....
I had to have more pictures done at the sonogram today. I did tell my favorite songrapher that I had been sick and I thought my R neck felt "puffy"
She was taking a lot more time than her usual and I did hear her say..you have some large lymph nodes here. So she of course showed it to the radiologist who wanted more pictures which I had to do. 

Tomm. I am going for the blood test so I am hoping the numbers are all good. We shall see.

If I do have to have a biopsy in the future my endo does them so I would rather probably have her do it than go see dr. who almost killed me etc. 

Dh was sweet and took us out for a late lunch/early dinner after that one.


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## Christine

LMP--it's always very nerve wracking, isn't it, when you feel like YOU know how the sonogram should go and then they start taking more pics.  I feel that way when I get my mammogram done.  I'm always looking at the expression on their faces, how many pics they take, etc.   I still have not scheduled my sonogram for my neck.  I haven't had one since early 2012 and I'm on a 5 year plan with those, so my doctor just said "sometime this year, I guess" and gave me the order.  Fortunately, it's been so long, I won't know what's normal and what's not but you've reminded me to make sure that I don't go if I've been sick.  No need to muck of the results with glands that are swollen due to illness.


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## luvmarypoppins

Well I threw in the towel and called the pcp group today. They said come in an hour. I got a resident but I didnt care. She was really nice and I was glad to just get in there.

They said the ear infection was gone but the sinus infection is still there. So now its another antibiotic and some cough pill I never had before.

She also wants to do a a chest xray because she says she hears something in my r lower lung. I told her my r lung doesnt work that well anyway.

I also asked her for another mammo script because I dont know what I did with the other one, so that is another thing on the to do list.

So its another week of antibiotics, we shall see. I am so sick of being sick. I feel lousy with a capital L.


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## macraven

I hope you start feeling better real soon


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## squeegee

Sorry it's been so long since I've checked in, y'all. Time has just gotten away from me. Things are going okay, health-wise. I'm due for a neck ultrasound in a few weeks, and am getting an MRI on my pituitary this week, to screen for a "harmless" pituitary tumor. 

Just wanted to let folks know I'm still alive-and-kicking. I finally started my trip report from December, too.


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## macraven

_I think about all the posters here a lot.
I might not be posting a lot here, but all of you are on my mind.

Wish you the best squeegee on the ultrasound you will soon be having.
Want to read you had great results!_


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## luvmarypoppins

squeegee - glad to "see" you. Wishing you all the best with the mri and hope you get a good report!

Well tomm. is my endo visit and of course I have butterflies. I wouldnt even think so much about it but today was the last day of the antibiotic #2 and I can still feel the lymph nodes popping out by my R collarbone. I am not a medical professional nor do I claim to be, lol, but wouldnt it make sense after all the meds that they would go down etc. I know when I have an infection in the lymph node on my L side it went down after the antibiotic and it itched. 

This is not itching and still puffed out so I am concerned. I will see her opinion on the subject.


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## luvmarypoppins

Well I went to the endo. It was good, bad and ugly, lol.

The good:  tsh is below one aka undetectable

The bad: She reviewed the sono and says to get it done again in June. She feels the enlarged lymph node is due to the infections I have.
She also said my liver enzymes are elevated so in 2 weeks I need to have a repeat blood test, She said it could possibly be due to the antibiotics

The ugly: First time this ever happened to me. She said the lab did not do 2 of the tests she ordered. They completely did not do the Tg test and the Vit D. WTH??? She said she would call them but I dont know if she really will because she told me to go back in 2 weeks and get those done along with the liver enzyme stuff. I watched the lab tech and she took 3 vials and some white tube. I questioned her about the white tube because I said I had never seen that before. She did explain it to me. I am not blaming her exactly. Maybe someone at the processing center did not process it correctly etc. But gheesh!!! 

They are really good at sending me bills but maybe they can get the test right. 

So she said she will call me and discuss all this when the results come back and just come back for the normal 6 month check up again.


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## luvmarypoppins

squeegee - any results from the mri yet. I hope they are good!

Christine - how are you feeling? I am sure this took its toll on you.

Well I will probably go for the blood test Sat. 

I also noticed that on my 6 month future blood tests she did  not order the tg again. Is this normal? I thought she usually always orders it. 

Starting to think of a May trip. Dh now has a new assignment in Boston, so I dont know when he has to go there or how frequently. He is going to the west coast the end of the month. And he now has some new bosses so I hope they will let him have the vacation time. I am still looking at a split stay between the Swan and the Yacht Club. I just love swimming in Storm Along Bay. I like the S/D pool too but its harder to get too and the water always seems a little cold. 

Check in when you can.


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## Christine

LMP, thanks for asking.  Not feeling great still.  Haven't totally gotten rid of the temperature.  Thought I was getting there but went back up to 100 about an hour ago.  My cough seems worse today also.  I just hope this improves. I don't have a primary care doctor anymore so that is part of the problem.

You should ask your doctor about the tg.  Sometimes I think they forget.  As low risk as I am, I still have it done every 6 months and I don't think that will ever change.  But maybe they have a reason for it and it doesn't hurt to ask.

I was planning a trip to WDW a week or so ago when I realized we all might be able to get away the week after my son gets out of school and before he starts summer school.  The airfare looked really affordable.  But then I got this stupid flu and I can't do anything.


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## squeegee

luvmarypoppins said:


> squeegee - any results from the mri yet. I hope they are good!
> 
> Christine - how are you feeling? I am sure this took its toll on you.
> 
> Well I will probably go for the blood test Sat.
> 
> I also noticed that on my 6 month future blood tests she did  not order the tg again. Is this normal? I thought she usually always orders it.
> 
> Starting to think of a May trip. Dh now has a new assignment in Boston, so I dont know when he has to go there or how frequently. He is going to the west coast the end of the month. And he now has some new bosses so I hope they will let him have the vacation time. I am still looking at a split stay between the Swan and the Yacht Club. I just love swimming in Storm Along Bay. I like the S/D pool too but its harder to get too and the water always seems a little cold.
> 
> Check in when you can.




I'll find out about the MRI this coming Thursday. Fingers are crossed. I just don't need anything else to worry about right now. LOL. 

A May trip sounds absolutely lovely.


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## luvmarypoppins

squeegee - wishing you all the best tomm. 

Christine - hope you are on the road to recovery. I know this thing seems to be keep hanging on with you. That happened with me too. Can you still think about a trip. When does summer school start. Our colleges here usually start June 6th or close to it. 

macraven - did you find a new endo yet? Hope you are settled in and enjoying your new home

singing mom  hope you have a nice visit with your dd. How are things going at Disney for her?

Well the endo called yest and left a voice mail. She said both the tg and liver stuff was good, ptl. I also did she she ordered the tg for the next 6th month thing and then she is doing a basic met panel instead of the comp one which she usually does. ,hmm.

I am still waiting about this lab bill stuff. I finally got some papers from the ins. comp. Apparently the hematologist ordered some test or wrote a code wrong that they wont cover. I will wait as I havent called anyone yet. But if its not covered I will we about $250, good reason I am not going to these people again. Worse they are only the monopoly around here so I think you have to go to one of their 20 bazilion offices if you have a problem. I guess I am also helping fund their corporate sponsorships of events and their lovely tv commercials around here. sigh, sigh. 

Need to get in planning mode. I can never pin dh down about anything. I have been looking at dining. Sadly I am a creature of habit. Probably mostly signatures this time and of course must have Cape May for dh.


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## Christine

luvmarypoppins said:


> s
> 
> Christine - hope you are on the road to recovery. I know this thing seems to be keep hanging on with you. That happened with me too. Can you still think about a trip. When does summer school start. Our colleges here usually start June 6th or close to it.


Yeah, I still have this cough.  I think physically though, I feel normal but the cough is almost constant and tiring.

My son's summer school starts on May 16th I think.  He gets out May 6th, then has that following week off.  The the 6 week semester starts.


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## macraven

i'm so behind here, but once i read what i have missed, will be back to posting.

hope all are having a great day.

and feeling better.


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## squeegee

Well, has the doctors visit yesterday, and the news is mixed. There was no evidence of tumor on the MRI, which is great, but he still suspects a microscopic pituitary tumor, based on the bloodwork. As long as there are no symptoms from it, we'll just keep on monitoring it with bloodwork. 

Bad news is that the ultrasound found two more lymph nodes, one of which needs to be biopsied. Ugh. Doing that next Tuesday. Fingers crossed that it's nothing.


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## macraven

_squeegee, hugs...

next tuesday will come soon.

prayers for you that it will be good news for that test._


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## luvmarypoppins

squeegee - thinking of you today, sending prayers your way and hope the fna went well. Nothing says fun like getting jabbed with needles in the neck, lol! (Forgive my weird sense of humor. It kept me going lots of times on this journey)

Seriously, though, so sorry you have to go through this again. 

Still trying to work on a trip. Some of the days I want the swan are sold out as well as the yacht club. There must be some kind of convention, so I told dh we will have to change the dates either to before or after. More research, sigh.

Also looking online for a condo for ds1. He has to be out of here in 18 mos, so no time like the present. I found a great one and it sold so fast, gheesh. One floor condos around here that are not for senior citizens are few and far between.


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## macraven

i have been thinking of squeegee today also.
she said tuesday was the day and here it is.

i wlll be going out of towm in the morning for the rest of the week, not sure if i will have wifi in the area i will be going to.
will try to check back in to sww how all are doing.

LMP, hope your son will be able to get the condo.
luckily he has time on his side so he does not have to rush right now seeking a place to move to.


hope all the others here are doing fine.
i'll try to be better in checking in here more regulary once i am back home.


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## squeegee

Thank you all for keeping me in your thoughts. The Biopsy itself went okay, he feels like he got adequate samples. Now the waiting game begins. 

He did comment, though, that the consistency of what he was trying to aspirate was unusual. He said it almost appeared to be coagulated blood inside the lymph node, and it wouldn't be sucked up. I took a picture of the cystic area at work. Anyone ever heard of anything like this? Dark areas usually indicate fluid, so that's why I call the circle a "cystic" area.


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## luvmarypoppins

squeegee - you are blessed to be able to actually sono and see yourself so to speak. I did get to see the microscope pictures of my cancer. It was interesting, scary and weird all at the same time. I was thinking I am fighting you (this cancer, lol)

Your lymph node does sound a little strange and different. Did he shake your neck to get the sample?
My experience was that when the surgeon couldnt get the fna sample on me, or at least what he considered a good sample then he resorted on the 3rd time to doing a core biopsy. I remember the thing looked like a caulk gun and he said to stay real still. But I cant remember if that was for the 12.5 cm tumor or the 4 cm one or both? I dont know if that would be an option for what you have in the future.

Also my fluid filled stuff was after my stomach surgery, a seroma which is fluid filled, but that was in my stomach.  Would that happen in a neck  lymph node too? Is the questionable lymph node on your post surgery neck side?

I hope the waiting game wont be too hard on you. But your have work and your sweet dd to keep your mind occupied and I hope you didnt experience that horrible weather. Saw on facebook someone I know had 8 windows blown out in SA on their house. 

macraven - hope you have a wonderful trip 

Christine - hope you are recovering and getting back to feeling like you. Did you get to do any reading while recuperating? I just won about 4 books, so I better get busy for sure.

Well I worked on the trip planning yest. I got as far as making adrs for Cape May and Yachtsman so far. Dh said he would call tonight to make some resort plans. So far if the rooms will still be available and we had to change the dates and move it up a little.  I think 3 nights at the Swan and then hopefully at YC or BC. We will pay for 2 nights at the Swan and then 1 night free with dh ff miles which is a night that is sold out and hopefully get an ap rate at the other place. If not back t the budget drawing board.


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## Christine

squeegee--keeping good thoughts for you for the biopsy results.  I had a similar issue with a breast biopsy once.  A had a radiologist freak out on me and doom me to cancer because of what was on the ultrasound.  Turns out, I had developed a hematoma from the biopsy a year prior and the hematoma (of which they were calling a "mass") was filled with mixed stuff and she freaked out.  My doctor, because of the freakout, had to do surgery.  Basically it was a hematoma that was resolving itself and it was old blood that was breaking down.  Not quite a solid, not quite a liquid.  All very stressful.

LMP--thanks for asking about me.  I went back to work this week.  Thought I was gonna die on Monday but each day gets a little better.  I still spend a lot of time coughing, mostly in the mornings, and I feel like my sinuses are inflamed (no headaches though).  So whatever it is just lingers.  A lady I know said she had the same thing:  had a fever for 11 days, coughed for weeks.  She said I have about 3 weeks of coughing left!  I did get a lot of reading done during my illness and now I've slowed back down to my usual pace.  I have run out of things to read so am picking up older stuff from a few years ago.  Right now it's Wild by Cheryl Strayed about her lone hike out on a trail that runs from Mexico to Canada.


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## luvmarypoppins

Well we finally got the trip booked. I did the research and I had dh call and book it since he is the starwoods member and I had him use his ap to get the ap rate at the other hotel. 

So we are staying May 17-18 at the Sean and then May 19-22 at the Yacht Club in a garden view room 

Now to book the flights and the rest of the dining. I only booked Yachtsman and Cape May. I am now thinking of trying Skippers Canteen because dh always says lets try something different. I am still doing food research, hmm maybe Trattoria al forno or the Boathouse?? We shall see.

And now ds2 says he might go to Disney with his gf even before dh and I go, gheesh` I know he wants to stay at the Dolphin. He said we spoiled him. He has stayed in Caribbean Beach on his class trip before. 

No tests or drs. appt. until June, but I just got another bill from the hematologist. There is a trend at some of these places I go to to not eve have a billing dept. They only ask for payment if its your lst visit. I think places are trying to save money and cut down on staff. This has happened to me in at least 3 places. I havent heard again from the lab about that big bill and test the hematologist ordered, so we shall see.


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## Christine

lmp--Oh, how I envy your trip!! My thoughts of a trip are completely over.  As I suspected, DS *finally* got a job in the town he goes to college at.  He will be working at Chick-Fil-A.  He's thrilled.  He won't start until the very last week of April, so it was good that we don't have an early May trip planned.  He's a bit worried that the job starts the week before finals but he'll have to get through it.  He's totally out of money so he was happy to get the job.  He will end up staying at school all year so he can work the job.  I guess we will see him on his days off.  The college is only 2 hours away so it's not that hard to get home.

I think I'm finally 90% recovered from my flu!  I'm in my second week back to work.  I've tried to start exercising again and that didn't go too well.  I've lost a lot of stamina.  My coughing is down to a minimum though. 

Doctors appointments.  Do they ever end?  I had my opthamologist visit (dry eye doctor) last night.  Gosh, I *hate* when the dilate your eyes. I don't think I'm going to do that anymore.  The stuff they used really irritated by eyes this time and I'm paying for it today.  I was supposed to have this visit in February, but I got snowed out, so I had to go yesterday.  Oh, and it was the SUNNIEST day of the year.  Felt like a vampire when I left, even with the sunglasses on.

Next week it's the annual GYN and then subsequent mammogram appointment. Hope all goes well there.  THEN, I'm going to schedule my neck ultrasound.  I'm waiting until as late as I can to do that as I am concerned I could have residual swollen glands in my neck from being sick.  I know they can take awhile to go down, but I don't need that stress.

Otherwise, all is well, but I am sick of "doctoring."  I want to be 25 again and never go.


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## macraven

Christine 
Sending you hugs
Hope your month of doctoring ends soon and well.


LMP
Wonderful news you are now booked!


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## luvmarypoppins

Christine - hope your appts. and testing go well. Congrats to your ds on the job. They just opened a chick fil a around here. Found out alot of people our ds know work there.  I like the market salad and maybe another salad, cant remember. 

And in more non thyroid related news....I guess my ds2 got the disney bug from listening to dh and I book our trip. He has just informed me that he and his girlfriend are going t Disney May 7-15. They got a great deal at the Swan too. They said they got the cheap room view because they will be in the parks so much and will go to Universal one day too. She has only been to the MK for 4 hours as a child.

 I am not to thrilled about all of this but he is an adult. He also wont be here for mothers day and he is usually does the grilling.

Also just found out dh and I have to go to a business dinner the night before we leave and our flight leaves at 7 am if we book that one, so we basically will have about 4 hours sleep if that if I know dh. We will be dragging around the flower show for sure.


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## Christine

I do try to stay out of Chick Fil A, but I like the Market Salad too.  That's what I get when I'm being good.  It's going to be very hard to resist the summer peach shakes this year!!!

I'm so jealous of your trips (I know I keep saying that).  I guess I've been away from the World for too long.  I need to sneak in your suitcase!!!  Your trip sounds so wonderful.  Good for your son, but I know it will be a bummer him not being there for mother's day.  It's tough when they start branching out in their own lives but I do try to handle it with the grace that my own mother afforded me (and she's never given me any grief for leaving her on Mother's Day which I used to do often).

At least when you go on your trip, you will have the adrenaline working for you so hopefully the lack of sleep won't be noticed.  I never sleep much the night before because I'm so excited.


----------



## macraven

when we lived in the chicago area, we always loved going to a chik fil a place.

now that we moved to GA, Chik Fil A is the last place we will eat at....

since trying other places, and everything down here has the chicken joints of bojangles, jax, etc, we find that Chik Fil A is too sweet.
think it is the batter they use and it's a lot of a sugar taste.

mother's day is just another day in my household.
there have been some years i get one card from one of my boys 
not an issue so this is not a complaint.
i'm always in their hearts and they don't have to send me cards on that one day a year to let me know they are thinking of me.

same with all the other holidays.
we are just not a card exchanging family or holiday type of people.

but i know it is a very big deal for some families.

guess it is the way you are raised that tends to make you celebrate some of the designated days each year.

i'm so behind on this thread and wondered what happened to squeegee tests.
hope it was okay for her.

for all that have talked about health and other issues, they have been included in my prayers.
i think a lot of the posters here and wish i was more up on keeping up here.

i'm struggling with my thyroid and salivary health and have not found a doctor in GA i can start using.
the lists of doctors are long but not all fit my needs.
need to start with an internists and then get the ENT and the Endo docs lined up.

just kind of blah when it comes to making a decision.
my internist back in illinois has been kind enough to do refills on my scripts 
i have been taking expired meds from 2012 the past two months but now i can pick up a new synthroid today.

christine sounds like you are on top of your health needs and covering it all soon.
mlp,  to you.  your son loves you dearly and i know it will be sad for you that tradition has been broken this year for mom day.


----------



## luvmarypoppins

macraven - I hope you can find an endo who you like. Maybe your new internist can give you a recommendation or two to pick from.  That is good you got the med from your old dr. I would wonder if meds that are 2 years old are still effective. I dont have a stash of synthroid but we were talking about this once on the thread, like should we have some in case there is a crisis etc. Now I can get a three month refill at once so that might help a little. 

Well I have got some kind of little sinus thing again. I know dh was sick so I might have gotten something from him.. Its mostly mucus and post nasal drip. I make sure I use alot of vicks at night and halls during the day if needed. I am not bad enough to go to a dr. I know something is going on because I still have the sinus headache that has never really gone totally away since the 2 antibiotics and I have some issues with vertigo. Only when I turn my head to the left which is the dissection side and its usually when I am turning or getting up in bed. Annoying to say the least.

I am not all that upset about d2 being away for mothers day. Its more of the religious/moral aspect of it. He has not even told my dh about it because he knows dh will not be happy either that is why he told me first, lol.  If he didnt live under our roof I would probably not care so much. 

I dont know if the other ds will be here anyway for mothers day or at least not most of it as I am sure ds3 has to work at the hospital and sometimes ds1 has to do a basketball tournament, so we shall see. I think last year I even ended up cooking the meal myself! Dh and I are looking forward to an empty nest, but it sure is taking a long time getting here, lol.


----------



## Christine

luvmarypoppins said:


> Well I have got some kind of little sinus thing again. I know dh was sick so I might have gotten something from him.. Its mostly mucus and post nasal drip. I make sure I use alot of vicks at night and halls during the day if needed. I am not bad enough to go to a dr. I know something is going on because I still have the sinus headache that has never really gone totally away since the 2 antibiotics and I have some issues with vertigo. Only when I turn my head to the left which is the dissection side and its usually when I am turning or getting up in bed. Annoying to say the least.



Have you ever tried something like Flonase or Rhinocort?  They all used to be prescription but are now OTC and they are very effective for swollen sinuses and post nasal drip.  They take about a week to start working but they do very well on this stuff.


----------



## macraven

Agree with Christine on the Flonase 
Son that had the deviated septum surgery has been on it for months now and it is very effective


----------



## luvmarypoppins

squeegee - thinking of you and hope you got good results

Christine - hope all your visits and tests turned out well too

singing mom - hope your dd is doing well in the disney program

Well now I have a bad muscle sprain in my r shoulder/back area. Why doe these things happen to me right before a trip visions of last years blood clot dancing in my head), lol?

Just finished making all the adrs. I am sure some will change. We are going to Trattoria al Forno the lst night because that is all that we could find at a decent time. Then we are doing lunch at Tusker House (that could change) and Be Our Guest lunch because I couldnt get dinner. The rest are all dinners and so far its Yachtsman, Coral Reef, Chefs de France and Cape May. I also want to try and walk up to Skippers Canteen in MK. Also planning n the breakfast buffets at the Garden Grove and Captains Grille. 

Ds 2 is taking my suitcase. I bet I will have to get out the febreeze when he brings it back. I am telling him to put all his dirty clothes in a plastic bag too. They have only made 1 adr - Biergarten and I made them one for Be Our Guest lunch and Ohana dinner when I saw it weeks ago. I would like to hear how they do with making adrs the night or day before or just walking up. I am not that laid back for sure. 

The weather here is rainy and dreary so I will be glad to see the Florida sun and heat for sure. 

Check in when you can.


----------



## macraven

The adrs you made sound great!
I try to book my add asap
I stick more with lunch table service as I over eat at dinner time and too tied to stay very long in the parks 

Let's hope your back/muscle clears up before your flight

When do you leave!

I'm booked for sept this year for my Orlando trip
First add I made was beirgarten
I try to do this one each visit
And I always overeat there

Someday I will make two different add for that place
One will be for the food the second visit will be for only eating salads and the desserts....

I have not been successful in finding new doctors here in GA

Made doc appt with my old ones in Chicago 
Flying out for four days and have 3 doc spots lined up early June

My endo mailed me the lab requisitions for blood draws to have done here at Quest
They will fax her the results so when I see her, she will be up to date on medicine review 

It would be cheaper to get new docs here I know
I need an internist for emergency situations 

Hope all is going fine for all here


----------



## Christine

Happy Friday everyone!  Hope everyone is well.  

macraven--so what's the problem with doctors in Georgia.  Is there a shortage?  This is something my folks worry about constantly when planning to retire.  They want to be somewhere where medical services/specialties are plentiful.

Just made my appointment for my neck ultrasound.  Had my last one 4 years ago and a "regular" radiology place.  This year I'm going with my friend to the Washington Hospital Center (they have a big thyroid cancer center) so I will probably get a more thorough/expert ultrasound, which kind of scares me.  Anyway, my best friend also had thyroid cancer, though hers was "incidental" but she has to have annual ultrasounds for awhile.  I sent her up there two years ago so she does everything through them.  So we will carpool there and have our checks done at the same time!  How many best friends can say they have done that.

Everyone's ADRs are making me hungry.  I'm not sure where I'd go if I went back.  We always love Citrico's, so probably there.  Haven't been to Cape May in a long time but I always enjoyed their buffet.  The Yacht Club had a good breakfast one also a few years ago.

Weather here is AWFUL.  Rain, rain, rain but we are supposed to get some sunshine on Sunday.

Everyone have a wonderful Mother's Day!


----------



## baler31

I don't usually post on the thread but have hyperthyroidism and look over it frequently.  Came across this report on thyroid cancer and thought some might like to read it.  

http://www.businessinsider.com/thyroid-cancer-treatment-doctors-science-2016-5?r=UK&IR=T


----------



## macraven

_ baler31

so glad you stopped in to share the article_


----------



## macraven

_Christine,
there is a shortage in my area and my choices are to go to nashville which is over 2 hours away or to atlanta which is one hour or more depending on traffic.

my husband found a new internist about 35 minutes from our house but his practice is at a hospital that has no specialities.
i might have to use that internist and will assume he will prescribe my synthroid to me in the future.
but in the meantime, my endo had requested lab draws every 6 weeks with a script adjustment possibly for the next 6 months.

so i go back to her in chicago and do a visit twice a year until i can secure an endo in my area, or near area.

my endo sent me the lab requisition that i will take to quest next week.
they will fax the results to her and by the time i see her june 1st, she will know where we are starting again.

from the phone conversation, she can have me do the labs down here every six weeks and sent new scripts to walgreens.
not the ideal to work with her but it is better than nothing until i can get into a endo practice that is taking new patients.
_


----------



## baler31

macraven said:


> _Christine,
> there is a shortage in my area and my choices are to go to nashville which is over 2 hours away or to atlanta which is one hour or more depending on traffic.
> 
> my husband found a new internist about 35 minutes from our house but his practice is at a hospital that has no specialities.
> i might have to use that internist and will assume he will prescribe my synthroid to me in the future.
> but in the meantime, my endo had requested lab draws every 6 weeks with a script adjustment possibly for the next 6 months.
> 
> so i go back to her in chicago and do a visit twice a year until i can secure an endo in my area, or near area.
> 
> my endo sent me the lab requisition that i will take to quest next week.
> they will fax the results to her and by the time i see her june 1st, she will know where we are starting again.
> 
> from the phone conversation, she can have me do the labs down here every six weeks and sent new scripts to walgreens.
> not the ideal to work with her but it is better than nothing until i can get into a endo practice that is taking new patients._



My SIL is at Emory.  If it would be helpful I could get a few names for you to research.  No worries if this does not work for you.  Thanks for the welcome, it is a nice friendly thread.


----------



## Christine

baler31 said:


> I don't usually post on the thread but have hyperthyroidism and look over it frequently.  Came across this report on thyroid cancer and thought some might like to read it.
> 
> http://www.businessinsider.com/thyroid-cancer-treatment-doctors-science-2016-5?r=UK&IR=T



Hi baler31!

Yes that article has been blowing up the thyroid news lately, hasn't it?  It does concern me though because I worry that someone will downplay their thyroid cancer.  Many of us with thyroid cancer know others who've had a tough go of it with "the good cancer."  It's good to see all this new research and happy to see them drifting away from the radical treatments (which I unfortunately had even though my cancer was small), but I am concerned in going to far in the other direction.


----------



## macraven

baler31 said:


> My SIL is at Emory.  If it would be helpful I could get a few names for you to research.  No worries if this does not work for you.  Thanks for the welcome, it is a nice friendly thread.


Yes I would if it is not asking too much of you

Don't go out of your way as I'm able to wait since I will be getting some meds early June
Thank you
With some new leads, I can google and check them out


----------



## baler31

macraven said:


> Yes I would if it is not asking too much of you
> 
> Don't go out of your way as I'm able to wait since I will be getting some meds early June
> Thank you
> With some new leads, I can google and check them out



No problem, I will ask her and post back here.


----------



## luvmarypoppins

baler - welcome and so nice of you to help macraven out

squeegee  - I hope you got a good report. Wishing you all the best

This thread is quiet.

Well my ds and his gf had a good trip he said. They did so much, not like dh and I who were like two old snails. 

The weather was so so. We got beyond soaked the first day, actually night. Twice we were just about to go swimming and they closed the pool due to the incoming storms and thunder.  We didnt even see Wishes. I did walk alot. Dh pushed me about half the time when I was tired or not breathing well. 

I wanted to try Skippers Canteen but we didnt make it, oh well. The food was ok. Liked the new Trattoria al Forno. The topiaries were really nice. Our room at the Swan had a nice view and balcony. At the Yacht Club our room was of a bunch of tree leaves and branches and the parking lot and disney busses were n the other side, so unromantic. I know dh said it was our anniv. when he booked the room. The Yacht Club rooms need some serious rehab which is scheduled I think. The Swan is always now my favorite hotel. Good for our budget and nice view, service, location etc. The deluxe hotels even with a discount are getting to be so overpriced and not a good value at all. We did get to swim in Storm Along Bay twice. So much fun. 

People were asking us where the friendship boats go and how much they cost, lol, dont you just love newbies.

We went through 30 bottles of water and 4 powerades, boy was it hot!! So much humidity. 

I will try and do a dining report. 

Most annoying things - telling them I am not taking the wheelchair into the rest. but then they try seating us at some table in Neverland. sigh. A few times dh told them to seat us closer etc. One annoying server who couldnt get the hint that we just didnt feel like chit chatting with him. Delayed flight going home and the tsa in Orlando not waiting for me to get out of the wheelchair so they decide to do a pat down in the wheelchair. I am crying and telling the lady not to touch me etc. the pain just shoots through me up my neck and spine to my head etc. She says I can take you to a private room. I say let me walk through the metal detector. She says no you are on the other side and I cant take you back there, um she was the one who took me there in the first place and was bossing dh around. I told her whatever you have to do then just get it over with and do it right here in public where everyone can see it. I wanted witnesses in case I turned into one of those horror stories I have heard about. She only patted me down in the wheelchair after she got her male supervisor who stood next to her the whole time. and wouldnt let dh near me. 

Oh and to add to it, the night before I was bending over in the wheelchair to put up the foot rest and I heard/felt something pop by my left rib. Of course I am crying in pain, cant do anything. Ds said he thought I must have pulled the muscle. Took tons of tylenol, not helping. still being careful not to bend etc. So not fun and now that I am home and dont want to go to the dr. either, but if it gets worse. I hope I havent pulled the stitches etc. that are part of my stomach mesh because it is a huge thing, like a basketball size the surgeon had said and its anchored in certain places, hope this is not one of them. I also had some surgery by one of those ribs anyway and am missing some cartilage so maybe that just aggravates the situation. Also one night I had some serious gastro issues. Ugh. this is to be expected I guess since she took my one med away. No ppi means trouble at times. 

Ds2 got to have an interview where dh works, so we will see if anything becomes of it. 

Well check in when you can. Hope everyone is doing well.


----------



## macraven

Hope you feel better real soon lmp


----------



## Christine

LMP, hope things are improving and I enjoyed the trip summary.  I don't think I can go back in the summer anymore (although you went in May which is most favorite time).  I can't tolerate the humidity well either.  

This thread has been quiet and I take that as a sign that we are all doing well.  I have not posted much because I've been really busy at work and in a training class all this week.  I usually pop into The Dis during some breaks at work but I haven't had any.  Thank goodness the LONG weekend is here.

My DD (24) officially moved out last weekend.  She is renting a room (very, very tiny) in a very tiny house in DC.  She's very happy so far and has an 8 minute drive to work now.  We shall see how she does with her finances, though.  I don't believe she really makes enough to move out, but I understand that she needs to do this.  I'm still paying her car insurance and cell phone.  Fortunately, she has a 3 month lease and then it's month-to-month after that so if it gets too hard, she can get out of it fairly quickly.

My DS just finished his second week of summer school (college) plus working at Chick Fil A.  He will be home for one day this weekend (gotta love Chick Fil A for closing every Sunday), and then for the whole weekend next weekend as he is in a wedding.  It will be nice to see him a little more.

Other than that, I have passed most of my major health tests with no issues.  Next up is my neck ultrasound on 6/15 and then I will be "free" for about 2 months (oh I do need a colonoscopy but I am in denial on that).

Hope everyone has a great weekend.


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## John VN

Thanks to all for this informative thread. The information here has helped me with DW's thyroid issues and mine since my right lobe was removed 3 years ago due to a parathyroid tumor and large goiter. I just had a biopsy on lump in left side last Friday and will find out in a couple of days if the dosage of my recently refilled Synthroid script will be enough or if it will need to be increased. 

Be well all.


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## macraven

John VN said:


> Thanks to all for this informative thread. The information here has helped me with DW's thyroid issues and mine since my right lobe was removed 3 years ago due to a parathyroid tumor and large goiter. I just had a biopsy on lump in left side last Friday and will find out in a couple of days if the dosage of my recently refilled Synthroid script will be enough or if it will need to be increased.
> 
> Be well all.



crossing my fingers that the results are normal....


----------



## luvmarypoppins

John VN - welcome and wishing you all the best with the test results


----------



## macraven

_oops, forgot to give you a "proper"  to our thread here!_


----------



## John VN

macraven said:


> crossing my fingers that the results are normal....





luvmarypoppins said:


> John VN - welcome and wishing you all the best with the test results





macraven said:


> _oops, forgot to give you a "proper"  to our thread here!_



THANK YOU!!!


----------



## macraven

I have a general question about the parathyroid glands

Have many of you here had any issues with it ?

My thyroid is ok but some issue may be about my parathyroid
Just don't  know much about it


----------



## luvmarypoppins

macraven - I know there used to be a sweet poster here on this thread who lost I know at least 1 parathyroid during her thy cancer surgery, maybe it was even more than 1, I cant remember. Her name was Jenn and she lived  in NY and she has DVC at AKL. She always goes in July. She hasnt been on the boards in a few years I think. 

I know surgeons try to take great care and not damage them during surgery. 

If I remember she had to take calcitrol, had trouble with tingling in her arms and other issues. I think she said her surgeon did try to reimplant them during the surgery but it didnt work. 

I would also think an endo might want to do a dexa scan to see if the bones are affected depending on the patient age too.

And wishing you all the best with your upcoming endo visit.

I thought I was done with drs. but I forgot the endo wants me to redo the neck ultrasound this month to check on that lovely swollen lymph node on the R side. 
Oh well, sometime this month I will do it, another day, another lymph node, lol!


----------



## macraven

Thank you LMP !
I flew from Atlanta to up north to see my endo
I have had my labs done down here and the results sent to my endo
Past 3 labs have my calcium too high.
Due to the labs, I had to see her in person 
Today I had the bone density scans done and she wanted the wrists done also
Won't get the results until Tuesday but I'll be bAck home by then

I was hoping someone on here has been through the parathyroid issue

I'm hopeful that the bone density test turns out normal
If that is the case then I stop the bp meds as endo feels it is the other reason for high calcium level in my blood

In the meantime I will not be losing any sleep over this as nothing is concrete until the bone density scan comes back


----------



## Christine

macraven,

I lost one of my parathyroids during surgery.  The other three obviously function nicely and I haven't had issues for years.  My friend had thyroid surgery and it took her parathyroids about 6 months to recover.  She had tingling for awhile especially during exercise.

Your calcium is too high though, which indicates not a failure of the parathyroid gland but something else.  You may have a small, benign parathyroid tumor (99% they are benign) causing overproduction of calcium.  I actually know three people who have had that.  Generally it calls for removal.


----------



## macraven

Yea my calcium is at 10.6
Will know bone density results on Tuesday which endo will decide about the outcome 
My endo said if bone density is ok then I stop my bp med as she said it can cause high calcium levels
Then wait and do labs again to make a decision if calcium is still rising
 If so then next doc will be the surgeon

I'm wishfully hoping bone density test will be normal and I will wake up next week with a calcium level of 8.3
I'm tired of surgeries...

Thank you for sharing 
I know nothing about parathyroid glands other that what I googled until I asked here


----------



## luvmarypoppins

macraven - sorry you are dealing with this

Just curious about the bp meds.   I am taking lisinopril and tekturna.


----------



## luvmarypoppins

oops I forgot to say totally not thyroid related that I did my dining review. No pictures though.


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## macraven

luvmarypoppins said:


> macraven - sorry you are dealing with this
> 
> Just curious about the bp meds.   I am taking lisinopril and tekturna.


My bp is diazide in the generic form which is (sp) triamentrine.
A portion of it effects the calcium levels in the body or so my endo told me
If scans show more bone loss first step is to stop present bp med and try a different one
Then if after 6 months on a new bp med calcium level still high then it would be surgery
That is the plan my endo has written up

The last 18 months my calcium level has rose from 10 to what it is now
Bone pain in the hip has really increased over the past two years

LMP, my dad was on lisinopril for ten years and it worked fine for him after his bypass surgery


----------



## luvmarypoppins

I always had a problem with my bp. Its probably genetic since my whole family is dead from heart issues at a very young age.
The bad problems started after the thyroidectomy, my bp went sky high. They said it was due to the thyroid loss which helps control bp.

They had a problem giving me something because I am allergic to so many meds and had a bad reaction to one bp med before and the one they gave me next caused another bad reaction, so my endo had to go and consult with one of the cardiac drs. and they came up with the tekturna (aliskiren) and so far its o.k. Not the greatest number at times, but I have a feeling that is probably cardiac stuff I dont want to know about.


----------



## John VN

Just a drop in to say that the thyroid biopsy came back (-) so another year and another scan. 

I had a parathyroid tumor 3 years ago with calcium shooting up and causing me grief.  Turns out that I also had a goiter with the right side so both came out.


----------



## macraven

John that is good news the biopsy was negative 
Always nice to have news like that 

Did not her results back yesterday
Guessing the department is backed up and handling readings of the ones prior to me

What type of issues did you have John before your tumor was removed?

I'm trying to figure out if my symptoms are similar to yours


----------



## John VN

macraven said:


> John that is good news the biopsy was negative
> Always nice to have news like that
> 
> Did not her results back yesterday
> Guessing the department is backed up and handling readings of the ones prior to me
> 
> What type of issues did you have John before your tumor was removed?
> 
> I'm trying to figure out if my symptoms are similar to yours



Mostly being tired, weak and not understanding why. Blood test had high calcium then further testing proved the parathyroid issue. 

As always, hoping for good results.


----------



## macraven

Well my blood testing has shown calcium has been high the last 23 months
Besides the bone density test , what other test is done to prove it is parathyroid problem ?
Anything  anyone can share will be very much appreciated


----------



## John VN

I had an ultrasound.


----------



## macraven

thanks john.

i'm now looking to see if i can find an endo closer to me.
prefer not having to fly to chicago again.

i have vanderbilt and emory for the major medical centers to choose from.


----------



## John VN

macraven said:


> thanks john.
> 
> i'm now looking to see if i can find an endo closer to me.
> prefer not having to fly to chicago again.
> 
> i have vanderbilt and emory for the major medical centers to choose from.



Hope things go well.  Mine was done by a great ENT guy.  He really informed me about everything and was overly concerned about vocal cords since goiter and parathyroid were large. Took some time for voice to return but constant checking on his part, great bedside manner, and his prediction of length of time, which was longer than normal, was pretty much spot on.


----------



## macraven

since i have thyroid and salivary gland issues, i feel confident about my medical treatment with my endo.
what i don't quite grasp is the medical plan to treat my hyperparathyroidism.

labs are now back and she wants me on bisphosphonates for 6 months, retest and if still hyperparathyroid, then surgery.

does this make sense?
i have a high calcium level in the blood, what would taking a scripted calcium med do for me?

i have googled this and have not found an answer i can live with.

if you have any thoughts or knowledge of this, please share with me.
color me confused at this point.

in the meantime, i am trying to locate a new endo that will be closer to where i live.


----------



## Christine

macraven said:


> labs are now back and she wants me on bisphosphonates for 6 months, retest and if still hyperparathyroid, then surgery.
> 
> does this make sense?
> i have a high calcium level in the blood, what would taking a scripted calcium med do for me?




macraven:  I found this:

*Bisphosphanates*
Bisphosphonates (bis-fos-fon-ates) are very effective drugs for helping to get your calcium levels down. You can have some of these drugs through a drip into a vein, but others come as tablets. Which type you need depends on how high your calcium levels are. Your doctor will decide on the best treatment for you. 

As well as getting calcium levels down, bisphosphonates can help to reduce pain from bone secondaries and help to stop damaged bones breaking. You may have bisphosphonate tablets to take home to stop the calcium building up in your blood again. We have more information about bisphosphonates and their side effects. 

Bisphosphonates can sometimes make your calcium level go too low (hypocalcaemia). This should be picked up by blood tests, but also causes symptoms such as changes in sensation – for example, tingling or burning in the lips or tongue.


Read more at http://www.cancerresearchuk.org/abo...ium/managing-high-calcium#q6OQCceRVGXUjxD3.99


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## macraven

Thanks Christine for helping 
I already had the info on those drugs but might not be able to take them


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## luvmarypoppins

Hope everyone is doing well

Christine - saw your other post about an August trip. I think 2 years ago I went with ds at the end of August and all I can say was boy was it hot!! I think we finished a case of water when we were there and it was about 4 or 5 days. I think I posted that I almost passed out by China in Epcot but I didnt. Ds was sweating like crazy. Oh and I didnt have to pee all day. I asked ds about this and he said I was just sweating everything out of me so bad.

So if you are going then just be prepared to hydrate. The lines for everything were bearable. He did alot of rides himself single rider like the coasters. 

If it works out I hope you have a great time. I dont know if ds wants to go there this time again (august) or not. He was actually talking about going to Las Vegas with his friends. He will die for sure from heat but its the only time they can go and I think they are going to see their relatives too.

I know ds gets the nurses discount at the Dolphin so I am sure he will try to talk me into something sometime soon depending on his schedule, lol.

Well I feel like the witch from the Wizard of Oz....help I'm melting, melting. Going on day 7 with no central air but the guy is finally coming tomm. (earliest he could get here). I have a feeling we will have to get a new system. Its 20 years old and 2 years ago he told us it would only last another 2 years.

Ds3 had today off so he took pity on my non air conditioned state and we went to see Finding Dory and then out to lunch where we bumped into our pastor and a guy from church. It was good to be in the air conditioning and we both liked the movie. 

I havent scheduled my sonogram due to all the ac issues and who knows what will be happening, so its on the to do list just dont know when yet. 

Check in when you can everyone.


----------



## Christine

Hey LMP, thanks for the input on the August trip.  After I thought about it, I realized I probably just can't go.  I've got my 16 y/o dog to care for and nothing to really do with her if we go.  My husband would have to stay home and I don't think he's up for doing that this time.  But who knows, maybe it will work out somehow (magical thinking!).  My son pretty much can't do anything during the school year as far as travel so I'm limited to summers and holidays.

Funny about your AC.  Mine went last week too.  My unit is 22 years old and it's been cooling less and less each year.  The only upside is that I have dual zone HVAC so while my main level does not have AC now, my upper level (bedrooms) do as that one is working well.  As long as I can sleep comfortably I'm doing okay.  I was breaking out in a sweat a few times cooking this week but it's manageable.  So, next week, I'm out $8,000.  

I had my neck ultrasound last Wednesday.  I haven't heard anything so I'm thinking the doctor just won't call.  He gave me the order for it back in February so I'm thinking we will just discuss it during my next visit in August.  I'm sure if it was "bad" he would probably call.  But maybe I should check just to make sure he got the report.

Oh well, thank goodness tomorrow is Friday.  I need a weekend!


----------



## SingingMom

I feel your pain - we had to replace central air unit last year and the furnace this year!  Quick - time to sell the house!  lol

DD finished her second internship and is waiting to hear about a full time job with Disney.  Everything is pretty much on hold due to over budget of Shanghai.  She's getting frustrated.  Her managers all said they would take her back in a minute - just as soon as positions open up again.

After all the sad events the past week in Orlando, DH decided he wanted to take vacation now and had me book a 7 night cruise on the Fantasy.  He said he needed to see DD and give her a diversion.  So - we fly in on Friday and spend a night at POFQ, then catch the ship on Saturday.  British Virgin Islands and US Virgin Islands, and Castaway Cay.  Back next Saturday, one more night at POFQ and then kiss our girl and head home.  I can't wait to see her - it's been over a month.  

At least I'm feeling better - had a terrible bout of asthmatic bronchitis the past few weeks.  First time using an inhaler.  I was wheezing like crazy!  Cough is finally calming.

say a prayer DD hears about a job soon!


----------



## Christine

SingingMom said:


> gain.
> 
> After all the sad events the past week in Orlando, DH decided he wanted to take vacation now and had me book a 7 night cruise on the Fantasy.  He said he needed to see DD and give her a diversion.  So - we fly in on Friday and spend a night at POFQ, then catch the ship on Saturday.  British Virgin Islands and US Virgin Islands, and Castaway Cay.  Back next Saturday, one more night at POFQ and then kiss our girl and head home.  I can't wait to see her - it's been over a month.



Sounds like a great way to cheer up!!!  Enjoy the trip and seeing your DD.

I ended up calling my endo today to check on the ultrasound results.  He never got them so I put in a call to the radiology department and they were supposed to be sending them over.  So I guess I can't really count on "no news is good news"!

Oh well, Happy Friday everyone!


----------



## Christine

Heard from the endo and the ultrasound was good.  During the call he said "they did note some lymph nodes on one side."  I'm like "What do you mean?  Were they enlarged?"  He says "No, all normal."  I asked him why they would *note* them then.  I mean, aren't lymph nodes supposed to be in the neck.  Yes, they are he says and it's normal.  Doctors can be odd at times.


----------



## macraven

Nice to see more here and catching up on how and what they are doing

I have my diagnosis completed and now searching for a new one 

Too complicated to keep traveling back and forth to Chicago for my endo there 

I need one within a two drive from my home so starting over again in my search

Weather here is hot and humid but not an issue for me

Looking forwards for my Orlando vacation this fall
Have adr's set up just more if a wait to do fp

Hope all are doing fine


----------



## 4HOLIDAYS

hello all- I had read a good portion of this thread when I started having thyroid issues last yr and remeber seeing a ref to a good site for more info. Someone here said there was One that had forums, had nice people on it that would answer questions.kind of like here.....I am wondering if any of you might know which site was being recommended?

I am going for my 4th ultrasound, 1st and 3rd were done 5 months apart at the same place and showed no difference in growths.  I had another,2nd, done at my 2nd dr office(the first closed his door with no notice)in betwwen no change in six=ze but wanted a biopsy on the other side.  Again benign. Insurance changed and had to go to new dr-he just did an ultrasound in office and said 1 nodule has grown rom 3.5 cm to 4 cm.  wants to talk surgery or another biopsy as he said its unusual for a begeing nodule to grow that fast.  I am now going to have another ultrasound done at the original imaging center where first and 3rd were done to make sure of growth.  

Blood work shows normal thyroid function.  That is why I am looking for more info.  I want to see what experiences people have had with surgery for when a nodule is getting to large, how large until commonly taken out, see what I can expect med wise, recovery...things like that.  

Thanks again for input!


----------



## macraven

I have not experienced what you are dealing with but wanted to wish you the best in what you are going through


----------



## Christine

4HOLIDAYS said:


> hello all- I had read a good portion of this thread when I started having thyroid issues last yr and remeber seeing a ref to a good site for more info. Someone here said there was One that had forums, had nice people on it that would answer questions.kind of like here.....I am wondering if any of you might know which site was being recommended?
> 
> I am going for my 4th ultrasound, 1st and 3rd were done 5 months apart at the same place and showed no difference in growths.  I had another,2nd, done at my 2nd dr office(the first closed his door with no notice)in betwwen no change in six=ze but wanted a biopsy on the other side.  Again benign. Insurance changed and had to go to new dr-he just did an ultrasound in office and said 1 nodule has grown rom 3.5 cm to 4 cm.  wants to talk surgery or another biopsy as he said its unusual for a begeing nodule to grow that fast.  I am now going to have another ultrasound done at the original imaging center where first and 3rd were done to make sure of growth.
> 
> Blood work shows normal thyroid function.  That is why I am looking for more info.  I want to see what experiences people have had with surgery for when a nodule is getting to large, how large until commonly taken out, see what I can expect med wise, recovery...things like that.
> 
> Thanks again for input!



4HOLIDAYS:  I can't think of site that just talks about general thyroid issues.  All the ones I know of deal specifically with thyroid cancer.

I can tell you that my best friend was having an issue with a very fast growing nodule.  I swear it just popped up one day.  She ended up having several nodules but one became very prominent and noticeable.  She couldn't really feel it but the neck can hide a lot.  Some nodules grow inward.  My cousin (male) had one that grew so large it was the size of a baseball but was enlongated and growing down inside his neck.  

Both of them had the nodules removed because eventually they can obstruct breathing and swallowing and, even with a biopsy, you can't be sure they aren't "hiding" some cancer.  In my friend's case, she did have a small cancer inside the nodule that 4 biopsies did not detect.  My cousin had none.


----------



## luvmarypoppins

4 Holidays - my dh friend had half his thyroid taken out because the nodules were getting bigger and it was getting difficult for him to swallow. His was not cancerous but he had it done at Memorial Sloan Kettering Cancer Center. I think that had to do with some clotting disease he also has. He was/is a high risk patient for surgery in general. But he is doing fine now from that.

macraven - how goes the endo quest?? I just saw an old friend who was visiting at church for,the holidays.She just moved to Decater. She is a social worker for the VA in Atlanta. I thought of you when I talked to her since she is a Georgia girl now too.

When are you going to Food and Wine? We are thinking of going in Oct and staying at the Swan so we shall see. I will avoid F and W on the weekends after last year and Friday up till 3 is bearable. 

Christine - I have just experienced the Chik Fil A peach milkshake. So good!

Singing Mom - hope things work out for your dd and that you all have a great time on the cruise.

I start teaching Monday so I am up to my ears with paperwork, decorations etc. Tomm. dh and ds3 are going to help me decorate the room. It will look like the ocean threw up in there, lol. 

My R neck is really bothering me again. This is the same side with the bad lymph node that I need the repeatc sono on. Also the tooth is bothering me again, so I am wondering if it is infected again or still infected. I cant do anything about it this week coming up for sure and the next two weeks dh has lots of meeting so he cant take me. I need to do something about this sooner rather than later. 

Hope everyone is doing well. Check in when you can.


----------



## macraven

LMP hope your neck pain eases up and the tooth situation also
It takes a lot out of a person when they have constant annoying pains 

Feel like burying my head in the sand when it comes to finding a new endo 

I google who is in Atlanta but no idea if they are the one for me

I have some months left in my synthesis script so no worries with that


Hope all are doing fine this summer!


----------



## Princesca

Hey guys - just wanted to pop in with a comment since I think I posted at some point about my thyroid. TLDR: I had hyperthyroidism due to multinodular goiter, and repeated "atypical" and inconclusive biopsies. I went back and forth, tried taking alternative treatments, but in the end, I decided that the constant stress of the biopsies was worse than anything, and I had a total thyroidectomy back in January. I am so, so, so glad I had it done. I feel a million times better than I did before. The surgery was relatively painless, the recovery was super fast, getting adjusted to Synthroid was much easier than I imagined, and I now have a cool new scar.  

Anyway, I just wanted to say that none of you are alone and if anyone has any questions for me about my experience or concerns about your own, I'm happy to talk about it. Just PM me, because I can't keep up with all the threads!


----------



## macraven

Great to read it went well with you !


----------



## luvmarypoppins

Princesca - glad to hear your surgery went well and you are feeling better post op. 

Singing Mom - how was the cruise? I hope you had a wonderful time with your dh and dd. Has she heard anything from Disney yet? Wishing her all the best.

Well I survived the Vacation Bible School. Ds3 adjusted his schedule so that he could help me. We also had 2 teen helpers. The one girl is my regular girl and she is great. She is a hs junior and wants to be a teacher. We had 7 girls and 1 boy in the class. They switched the ages of the classes this year so instead of 3rd and 4th combined, I just had 4th. But I was still exhausted and took a nap every day I came home. 

Ds3 is going to Las Vegas with 2 friends the end of the month. Boy will he be hot!! 

Hoping to get a mammogram and neck sonogram scheduled soon but they will be at different places. 

I spent the last 2 days catching up with everything that I put aside during the week, lots of laundry etc. 

Dh is still asking me to go to Disney in August with his friends. It will be so hot. My ap expires before the end of the month and I looked at flights and they are so expensive. Southwest has a captive audience here in NY. I told him I already saw mostly everything (except the new soarin) and I dont feel like sweating like I did the other August with ds3 and I dont even know these people. They are our age and have never had kids and she is a disneyholic dh said. She has a dedicated room in her home and collects alot of high end disney stuff. 

Hope everyone is doing well


----------



## SingingMom

Our cruise was fabulous!  The Fantasy was a gorgeous ship and the adult only areas were terrific.  We had a lovely time together.  DD just got a job, starting next Monday, but it's not with Disney.  She is going to be front desk/concierge with Reunion Resorts - a five star, AAA 4 Diamond rated resort.  She hopes to work for Disney in the future, but this will be wonderful experience and a resume builder. 

I don't blame you about not wanting to do Disney in August.  It's just "Too Darn Hot"!  We didn't even go to the parks our last day before we flew home from the cruise - we just stayed by the pool.  TOO muggy.  Very thick air.  I'd wait until October if I were you!


----------



## luvmarypoppins

singing mom - so glad you had a wonderful trip and your dd's job sounds great. Agree that it is good resume building for sure. 

Well I told dh I am not going to Disney in August. The guy he is suppose to meet told him he just hurt his back really bad and also that his wife and him are staying somewhere offsite, so that would factor in about meeting, planning times etc, going back for breaks. And if the flight prices werent bad enough the final deal breaker was that the Swan was unavailable for the dates the other guy is going. So I am talking dh into food and  wine

macraven - when are you going to food and wine?

Christine - Doing any fun summer reading. I just won another 4 books and I am stuck in the book I am reading for over 2 weeks. I couldnt even read due to the teaching I was doing.

Oh and now in the we just cant win this summer. First it was sweating and no a/c for the week and now ds2 informs me this morning there is no hot water. The water heater is also old and I will talk to dh. So now we have 2 choices. Call our usual plumber who messed up something the last time he was here while fixing the first problem or call the a/c guy because they do water heaters too and I really love this companys work. I wont be home unless dh is here when they come. But since they took a week to get here with the a/c then I have visions of a week of cold showers might be in our future, sigh!!


----------



## Christine

Hello, luvmarypoppins!  Sorry to hear about your trip falling through but you didn't seem to be 100% on board with going anyway.  No, no fun reading here.  I had a LOT of books that I had on reserve come in at the same time so I had to not read some of them and go back on a waiting list.  It's so frustrating because I wait a long time for them and then they seem to come all at the same time, even though I'm on various different positions on the hold list.

That stinks about the hot water heater.  I think we might be on our second or third one.  We usually just go up to Home Depot or Lowe's and pick one out and then they deal with the contractor.  Having done that, I usually wait no more than 48 hours for the new install.  I've never had an issue with anyone's work so that might be an option for you.  I think most companies consider no hot water somewhat of an emergency so they will often get out there fast.  I did have to wait almost 2 weeks for my new AC to come, though.  Fortunately I have an upper floor unit so my sleep was comfortable.

Everyone have a nice weekend.  It's supposed to be 100 degrees here in Virginia.


----------



## SingingMom

Christine said:


> Hello, luvmarypoppins!  Sorry to hear about your trip falling through but you didn't seem to be 100% on board with going anyway.  No, no fun reading here.  I had a LOT of books that I had on reserve come in at the same time so I had to not read some of them and go back on a waiting list.  It's so frustrating because I wait a long time for them and then they seem to come all at the same time, even though I'm on various different positions on the hold list.
> 
> That stinks about the hot water heater.  I think we might be on our second or third one.  We usually just go up to Home Depot or Lowe's and pick one out and then they deal with the contractor.  Having done that, I usually wait no more than 48 hours for the new install.  I've never had an issue with anyone's work so that might be an option for you.  I think most companies consider no hot water somewhat of an emergency so they will often get out there fast.  I did have to wait almost 2 weeks for my new AC to come, though.  Fortunately I have an upper floor unit so my sleep was comfortable.
> 
> Everyone have a nice weekend.  It's supposed to be 100 degrees here in Virginia.


When we renovated two of our bathrooms we had a tankless hot water heater installed.  Love it.  No worries about a leak again! 

Very hot in NJ this weekend too.  Just made plans for another trip to see DD - staying at PO Riverside for a few nights   as her roommate moves out of the apartment five months earlier than she was supposed to.  @@   Added stress as she starts her new job next week, so I figured I'd go give her some "mommy support".   Was able to reserve her a nicer apartment complex for September, so I'll return then to help with the move.  Getting a two bedroom so I can stay when I visit and will be a home base while I start scoping out areas for when DH retires.  Never a dull moment!


----------



## Christine

SingingMom said:


> When we renovated two of our bathrooms we had a tankless hot water heater installed.  Love it.  No worries about a leak again!
> 
> Very hot in NJ this weekend too.  Just made plans for another trip to see DD - staying at PO Riverside for a few nights   as her roommate moves out of the apartment five months earlier than she was supposed to.  @@   Added stress as she starts her new job next week, so I figured I'd go give her some "mommy support".   Was able to reserve her a nicer apartment complex for September, so I'll return then to help with the move.  Getting a two bedroom so I can stay when I visit and will be a home base while I start scoping out areas for when DH retires.  Never a dull moment!



Never a dull moment, but fun!!!


----------



## baler31

macraven said:


> LMP hope your neck pain eases up and the tooth situation also
> It takes a lot out of a person when they have constant annoying pains
> 
> Feel like burying my head in the sand when it comes to finding a new endo
> 
> I google who is in Atlanta but no idea if they are the one for me
> 
> I have some months left in my synthesis script so no worries with that
> 
> 
> Hope all are doing fine this summer!



Sorry, it has taken me so long to post.  My SIL said Sumathi Srivatsa is very well liked by patients.  She also rec'd a Phillip Berry but does not believe he sees any new patients.  At least this gives you somewhere to start in your search, sorry for the delay.


----------



## macraven

baler31 said:


> Sorry, it has taken me so long to post.  My SIL said Sumathi Srivatsa is very well liked by patients.  She also rec'd a Phillip Berry but does not believe he sees any new patients.  At least this gives you somewhere to start in your search, sorry for the delay.


Thank you for the names!

I'll get on this today


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## luvmarypoppins

Macraven - good luck with the endo quest

Well I got a refund check in the mail today from my ins. company. They said their drug billing program was not working correctly one time and gave me a refund for $21. 

Starting to look at the Food and Wine trip. And thanks to my swan and dolphin post I found out the one time frame is the Gartner conference at the S and D. This is the same time frame as the Chew will be there and I thought maybe ds3 would like that, I dont even know if he wants to go but we shall see.

Dh is gong on another big trip sometime in Aug. He is going to Michigan and then the west coast at least for a week. More miles for another disney trip hotel. 

Just saw that our area is in a severe drought warning. Every time it storms it just seems to mostly pass over us and we get little rain. We really need it because if we dont then in Sept. they usually have the wildfires but not in our area though. Tomm. is suppose to be a stormy day.


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## macraven

Thanks LMP


We are in a drought also
Now 10 inches below normal

I need to do a rain dance


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## luvmarypoppins

Christine - sorry to hear about your nosebleeds (saw your other thread). I am sure it must be scary. I know my sister used to always have them as a child and she had to have her nose cauterized and after that she never had them again.

Also the teenage girl who helped me at the VBS this summer also had a really bad one and she had to be out of the class for over and hour one day. She came back with gauze taped to her nose. She said she gets them a lot too and they were considering the cauterizing thing for her too. 

Also I am sure the hot flashes are enough to deal with for you and now this right? I hope you can get some answers and some relief soon.

Ds3 had a great time in Las Vegas he said. He saw 2 Cirque du Soleil shows. I guess he got hooked after we saw the one at Disney. 

Dh is leaving for the west coast tomm. He said Food and Wine was good, so now we just have to work out the dates. 

We usually eat lunch at the food booths, but gosh it gets expensive. not for me because I really dont eat alot but dh. I even try to put a limit on him, not with the card but I just say heah, just get like 3 or 4 entrees or 3 desserts and if there is something I try and don't like I usually give that to him too. It really adds up. But he does what he wants, sigh. 

Anyone see the article today.....it was in my yahoo news feed from Fox Entertainment News......

Jax the 20 year old 3rd place winner from American Idol was diagnosed first with Hashimotos since she said she went to urgent care and said she had trouble swallowing. She said she had 18 nodules on her thyroid and after the biopsies 12 were cancerous, wowsa that is alot!!!!! She says....I am radioactive now.

She is from the town my aunt lived in and I know my aunt tells me about the urgent care there. I think there are two of them and the one is really good so I am glad they caught that with her. She says....I am realizing my thyroid is more important than my brain, lol!!!

Check in when you can. Happy Summer, or what is left of it.


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## SingingMom

DD is settling into her new job.  Misses working for Disney, but she's still hopeful.  She actually had an interview this week.  My visit with her was very nice - she and her roommate parted on good terms and I helped her get the apartment ready to move.  We visited her new complex to see where the actual unit is located and I'm very pleased.  If she returns to work in MK in the future, she can even WALK to work!  I'm returning next month to orchestrate her bedroom & dining furniture moved & set up, and order living room and 2nd bedroom furniture and be there for the delivery.  I told DH I may stay the winter.  LOL 

I'm getting ready to make my annual appointments.  I have a stress test & echo scheduled for November.  My internist doesn't like my BP, so added a second medication and the cardiologist didn't disagree.  The Lipitor is working very well - my numbers dropped considerably.  Since my diet is NOT high in cholesterol, dr truly feels it is hereditary.  My brother and sister are in the same boat. 

I had two little blips in my trip this past time - I forgot one of my medications!  One of the BP meds, which is super important.  I didn't have a car and DD was at work when I arrived, but a friend was in town and took me to CVS.  They were wonderful - it was my stupid insurance company that I wanted to smack.  Had to use "mail order" so they wouldn't let CVS fill it.  I said - fine - I'll pay out of pocket - it was just enough pills for the week.  They wouldn't release the prescription! Even CVS tried to convince them.  So I had to contact the doctor's office, who called CVS, and it was finally worked out.  But, I had no car and was depending on my friend, so she had to take me back and forth.  Thank goodness for good friends!  Word to the wise - triple check that you have ALL your meds and not ALL CVS locations are full pharmacies!  lol

The other blip was my 6:30 pm return flight didn't leave until 10:30pm  @@  We landed at 12:30 pm, but the gates were all busy, so we sat on the plane until 1am!  Poor DH picked me up but had to go to work the next day.  Silver lining - $75 credit from JetBlue.  I'll take it!


----------



## Christine

LMP--thanks for your encouraging words on my nosebleed.  Trying not to be a hypochondriac.  I've just *never* had them.  Hoping that I just have an incredibly dry nose...

I saw the thyroid cancer article today on my Facebook feed.  I don't watch American Idol so I don't know who Jax is but, yeah, 18 nodules.  Benign or cancerous, that thing needed to COME out!!!

I have no trips planned as everyone's schedule is just so mixed up.  My son is off next week, but I really couldn't get anything together so he will be going to Myrtle Beach with a friend.  My son, who is really a good boy  (don't I sound like one of *those* mothers?) got a speeding ticket a few weeks ago coming home from school.  Speed limit is 70 mph but he was going over 80 when he passed someone.  Anything over 80 mph in Virginia is considered a reckless ticket.  So he had to get a lawyer.  They are confident it will be reduced due to his clean driving record.

SingingMom--that's so frustrating about the pharmacy. It just should be that hard.  I also have to use CVS, which is really fine, but it should not be that hard when you forget something (realizing this is the insurance company and not a CVS problem).  I mean, it's not like you were trying to get Xanax or Oxycontin.  Don't you feel like CVS, in general, kind of drives you crazy?  Between my prescriptions and my son's asthma medications I feel like they are always texting me, reminding me, etc.  I've been calling them the CVS-Mafia.


----------



## SingingMom

Christine said:


> LMP--thanks for your encouraging words on my nosebleed.  Trying not to be a hypochondriac.  I've just *never* had them.  Hoping that I just have an incredibly dry nose...
> 
> I saw the thyroid cancer article today on my Facebook feed.  I don't watch American Idol so I don't know who Jax is but, yeah, 18 nodules.  Benign or cancerous, that thing needed to COME out!!!
> 
> I have no trips planned as everyone's schedule is just so mixed up.  My son is off next week, but I really couldn't get anything together so he will be going to Myrtle Beach with a friend.  My son, who is really a good boy  (don't I sound like one of *those* mothers?) got a speeding ticket a few weeks ago coming home from school.  Speed limit is 70 mph but he was going over 80 when he passed someone.  Anything over 80 mph in Virginia is considered a reckless ticket.  So he had to get a lawyer.  They are confident it will be reduced due to his clean driving record.
> 
> SingingMom--that's so frustrating about the pharmacy. It just should be that hard.  I also have to use CVS, which is really fine, but it should not be that hard when you forget something (realizing this is the insurance company and not a CVS problem).  I mean, it's not like you were trying to get Xanax or Oxycontin.  Don't you feel like CVS, in general, kind of drives you crazy?  Between my prescriptions and my son's asthma medications I feel like they are always texting me, reminding me, etc.  I've been calling them the CVS-Mafia.



Actually, it wasn't CVS at all - it was Express Scripts, that we have to use for mail order refills of long term Rx.  CVS was trying to get Express Scripts to release the latest Rx to let them fill a week's worth of pills.  I had used CVS when I filled the Rx the first time - but after two fills it has to go to Express Scripts.  I just hate insurance companies in general.  LOL


----------



## macraven

I hear you on hating insurance companies

I have a med that is not covered and the substitute for it is not one I will take due to its side effects

I got my script from Goodrx. Com and it was greatly discounted


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## baler31

Many studies following rise in thyroid cancer:

http://www.nbcnews.com/health/healt...r-diagnoses-rise-treatment-may-not-be-n633061


http://www.healthimaging.com/topics...ust-say-no-hypervigilance-over-thyroid-cancer
What’s more, studies from Japan have shown that immediate surgery and watchful waiting are equally effective in averting deaths from thyroid cancer, the authors note, adding that only a small minority (3.5 percent) of 1,235 Japanese patients with papillary microcarcinomas who were followed for an average of 75 months had clinical disease progression—and none died.

More things to discuss with your Dr.


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## macraven

Thank you for sharing that with us


----------



## Christine

baler31 said:


> Many studies following rise in thyroid cancer:
> 
> http://www.nbcnews.com/health/healt...r-diagnoses-rise-treatment-may-not-be-n633061
> 
> 
> http://www.healthimaging.com/topics...ust-say-no-hypervigilance-over-thyroid-cancer
> What’s more, studies from Japan have shown that immediate surgery and watchful waiting are equally effective in averting deaths from thyroid cancer, the authors note, adding that only a small minority (3.5 percent) of 1,235 Japanese patients with papillary microcarcinomas who were followed for an average of 75 months had clinical disease progression—and none died.
> 
> More things to discuss with your Dr.



Any info on regular carcinomas versus micro?  I think that makes a big difference.


----------



## SingingMom

Exciting (non thyroid) news that I had to share!  DD is now a permanent cast member!  She will be in Children's Activities and Recreation at two of the resorts!  Her current employers (high end resort) were happy for her and were very understanding - they told her she was always welcome to return!  But, DD relocated to Florida after college graduation for a career with DISNEY, so she is THRILLED!  So are we!!


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## macraven

Such exciting news!!!!



I love this message


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## Christine

SingingMom said:


> Exciting (non thyroid) news that I had to share!  DD is now a permanent cast member!  She will be in Children's Activities and Recreation at two of the resorts!  Her current employers (high end resort) were happy for her and were very understanding - they told her she was always welcome to return!  But, DD relocated to Florida after college graduation for a career with DISNEY, so she is THRILLED!  So are we!!



That's wonderful news!!!  Glad it all worked out.


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## bellanotte10

Hi all! I posted here a few years ago when they found a small cyst on my thyroid and no one thought to tell me to follow up on despite me asking.... Finally someone agrees and referred me to an endocrinologist....came out with a diagnosis of hashimoto's! No treatment needed at this time but I do have to go gluten free and lose about 10 pounds and I am so overwhelmed and I don't even know where to start


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## macraven

bellanotte10 said:


> Hi all! I posted here a few years ago when they found a small cyst on my thyroid and no one thought to tell me to follow up on despite me asking.... Finally someone agrees and referred me to an endocrinologist....came out with a diagnosis of hashimoto's! No treatment needed at this time but I do have to go gluten free and lose about 10 pounds and I am so overwhelmed and I don't even know where to start


I have this same diagnosis and was started on synthroid that day with my doc

Any reason he did not start you on any med?

My levels were not easy to get the right level in the beginning
It took three years before I was at the correct dosage and 18 years later my levels were still up and down

For some peeps it is better and the  dosage only has to be tweaked seldom

Do you have to go back in 3 months or so and have your thyroid levels rechecked ?

I would call and find out your endo's plan for you 

I started out using my internist for my treatment and he eventually referred me to a endo doc as he could not understand the great change levels on my blood work

I hope it goes fine for you and you stay with us to chat about it

The added weight happened to me but it has gone up and down based on how much synthroid dose is

I can't take the generic meds for my hasimoto


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## Christine

bellanotte10 said:


> Hi all! I posted here a few years ago when they found a small cyst on my thyroid and no one thought to tell me to follow up on despite me asking.... Finally someone agrees and referred me to an endocrinologist....came out with a diagnosis of hashimoto's! No treatment needed at this time but I do have to go gluten free and lose about 10 pounds and I am so overwhelmed and I don't even know where to start



I have not heard of going gluten free for Hashimoto's?  What's the reasoning for this?


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## macraven

I wondered if she had another condition for going gluten free

I was thinking she wanted to be gluten free to help lose the ten lbs


Not had any doc or endo talk about gf due to thyroid


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## bellanotte10

hi I'm back! was wicked busy running around grabbing records and paperwork and packing for a Disneyland trip!  Thank you for replying!

 no meds at this time because he's still doing baseline tests ( antibody tests, tsh checks, another thyroid ultrasound). he's pretty sure i'll have to go on them ,but he just wants a baseline before he puts me on them, then i'll go back in 6 months and get rechecked, and we'll decide a final course of treatment then. However if the current labs come back completely irregular then i'll get put on them immediately.  I just had my thyroid checked as part of my annual, so lots of tests to use as a data to see what's going on, then determine a dosage.

Gluten free is because a lot of people with Hashimoto's have a gluten sensitivity. I also have IBS so he thought it would help. I've seen a few people on another message board get told they should go gluten free, and there are specific Gluten free for Hashimoto's cookbooks I saw on amazon when I was looking for more information. 

So you're right, there is something else, but he also said it should help with the Hashimoto's, if anything to alleviate something until he can see me again to see whats changed.


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## macraven

This is the first time I have read those with hashimoto have a tendency to be gluten intolerant 

My endo's have not mentioned that

I'll google it and see if this is a new theory


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## luvmarypoppins

singing mom - congrats to your dd. I am sure she is thrilled! Glad her dream came true.

bellanotte - interesting about the correlation. My sons gf is gluten free and takes synthroid but I really dont know if she has hashimotos or not. 

macraven - do you do any of the F and W special events. Have you done the dining package. Last time we just stood in the back and it was like 4 deep for the concert but it was some band that was very popular, I forgot who. We just usually snack for lunches around the world.

Christine - sure your ds is back to college. Hope things are going well for you. (no neosebleeds etc)

Well I just made my blood test appt. for saturday. I have to work around dh schedule and then I made the sono appt. gheesh I cant get an appt. until Sept. 16 and I told the lady that my apept. with the dr. is the 20th. I like to get it done there since the dr. can just get the results asap but I know the nurse at the endo place usually calls like 2 weeks ahead of time and says where are your test results etc. I will just tell them when my appt. is. Usually I only have to wait a week. Looks like lots of sick people and testing. 

Our summer didnt exactly end on a good note. Last sat. we got rear ended. When dh gave me the police report I couldnt believe it was a boy ds2 went to grade school with. He had a concussion and they took him to the hosp. Now dh is trying to work with his ins. company and its not going well. The lady says we have no record of him - wth?? So strange - his father came knocking on our door asking how we were. He said he didnt remember the boys being in school together. Only dh went out to talk to him. I thought the whole thing was creepy and inappropriate. I just pray he has ins. because our van is driveable but messed up for sure. 

So I havent made any plans yet for the oct. trip to Disney. We will probably go the 3rd week and ds3 wants to go with us, um I dont know about that. He rushes all around and we like to take it easy.


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## SingingMom

Sorry to hear about your car, MP.  Never a dull moment!

We snack (and drink! lol) around the world during F & W.   This year I'm going to be extra particular on what I eat.  The strange combos did a number on my stomach last year!  I'll stick with Greece and France! 

Heading down for two weeks to help  DD move to her new apartment.  It will be the longest I've ever stayed in Florida and the longest DH and I will be apart since we're married!  Hopefully he won't starve!  He is meeting me the last weekend and flying home with me.  We need him to do some "daddy chores" for her new place!   She is SO EXCITED to start her new job!


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## macraven

Well, leaving Bushnell as the funeral for both parental units now over 

Will leave tomorrow if weather improves to return home


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## Christine

luvmarypoppins said:


> Christine - sure your ds is back to college. Hope things are going well for you. (no neosebleeds etc)



Yep, son is back in school (but he's been gone most of the summer anyway).  No more nosebleeds but I was about 7 months between the last two.  I did finally see a GP for them and he ran a battery of tests to ensure that I didn't have some underlying condition, but all checked out well, so he chalked it up to fragile superficial blood vessels in the nose probably exacerbated by menopausal changes (dryness, thinning skin).  Or it's just a fluke.  Nose looked good, no tumors or lesions there, so at least I don't have to worry about freakish things!


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## luvmarypoppins

macraven said:


> Well, leaving Bushnell as the funeral for both parental units now over
> 
> Will leave tomorrow if weather improves to return home



So sorry for your loss. Sending you my deepest sympathy and prayers


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## macraven

Thank you LMP
Still in Ga waiting for better weather so I can start the drive home


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## luvmarypoppins

Happy Thyroid Cancer Awareness Month everyone!!

singing mom - I hope you have a great trip and get your dd all settled in.

Interesting abut Bellanottes comment about the Hashimotos and gluten free. Just met ds2 girlfriend and she told me she dos has Hashi's!! and as I posted before she is gluten free!!

Going for my sono on Friday. I hope I get my usual tech. The other one I had once was a little too rough. 

The dilemma goes on about our van. The other company keeps insisting they have no record of him yet they sent out an adjuster to look t the car? Dh said this was done at his insistence. (dh). He is going to the auto body shop tomm. That is where the kids car was towed to sot they must have some record of something. I have a feeling something fishy is going on. I told dh to call up the parents of the boy as the dad didnt think anything of us and showed up on our door step. I hope he will be honest at least. I really dont want to go through our ins. as we just got that ins. and I am sure they will drop us like a hot potato if we file a claim.  I told dh if the cop saw his ins. card then the only other explanation was he didnt pay the premium of the policy perhaps. Its such a difficult situation. sigh. 

Oh and in other news dh says now he might not be able to go on the disney trip and I should just go with ds3. I said I dont want to go with him because he has been pretty impatient about things lately and has an attitude. I dont want to deal with that, its suppose to be a vacation after all!! I took so much time planning and making the adrs one day. Oh well at least we didnt book the room or do the flights yet. I dont think this will work out because the longer we wait the more expensive the flights will be, but dh has some big project deadline and must be there etc. Such is life. 

Check in when you can.


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## luvmarypoppins

Well the sono is done. I had my usual great tech G. whom I just love. She is the sweetest. She told me the lymph node is still there. I noticed she spent alot and I mean alot of time on the R side and practically ignored the L side. She said the radiologist did not ask fr anymore pictures after he/she looked at the ones she did.
So I dont know what to make of this. The last time the radiologist report said it appeared not to be cancerous. The endo thought if it was swollen /enlarged due to that infection I had then it would take up to 6 months to go away and be resolved, hello its now six months.

I told dh I notice my ear is still getting clogged and not draining right so I dont know if there are some other issues there. So maybe this is nothing, maybe its something . Such is life. 

We will see what the endo says on Tues. 

This time they made me pay $35 for the sono. Hmm, in March I paid nothing. Go figure that one. Well the hosp. is very good about giving you your money back if they have to. I wasnt going to argue with the billing lady.


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## prprincess

Joining in on the convo. I was diagnosed with thyroid cancer back in late 2010...hence my joining the boards, leaving, and coming back. I kinda became a bit anti-social after everything happened. 

Long story short, I was diagnosed with nodules and hyperthyroid back in 1992. I had numerous biopsies and was put on synthroid, and then in 2009 and 2010, the nodules that were drained kept redeveloping fluid and upon testing, I was told there was a 20% they were cancerous, so I agreed to have my entire thyroid removed. I underwent radioactive iodine treatment in early 2011. I've been clean since then, except for some enlarged lymph nodes that I have monitored via ultrasound every two years.  And of course the removal made me hypothyroid and I'm on levoxylthyrine for life. 

Not only did the entire experience change me mentally--it gave me a new perspective on life, and taught me who my real friends/family are, but it also has changed me physically. I'm on top of my game medically, where I try and take care of myself the best that I can and monitor my levels on the regular, but am living a new normal where I just don't feel 100% at all anymore. I also feel that my health has deteriorated--on top of the typical hypo symptoms, I also have two other acute conditions--sinusitis and TMJ arthralgia. It gets me down sometimes, but hey, at least I'm still here!

Just thought I'd share my story. Glad to have found this thread and to know that I'm not alone!!


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## macraven

Prprincess, so glad to have you join in and share!

We are a small group but everyone here is absolutely a sweetheart

MLP is our leader and I'm sure she will be back to welcome you also

No cancer for me yet as far as I know
Have not found an endo for the parathyroid gland issue

My head is in the sand and I have quit thinking about it 

I take my synthroid daily for hashimoto and it works for me


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## Christine

prprincess said:


> Joining in on the convo. I was diagnosed with thyroid cancer back in late 2010...hence my joining the boards, leaving, and coming back. I kinda became a bit anti-social after everything happened.
> 
> Long story short, I was diagnosed with nodules and hyperthyroid back in 1992. I had numerous biopsies and was put on synthroid, and then in 2009 and 2010, the nodules that were drained kept redeveloping fluid and upon testing, I was told there was a 20% they were cancerous, so I agreed to have my entire thyroid removed. I underwent radioactive iodine treatment in early 2011. I've been clean since then, except for some enlarged lymph nodes that I have monitored via ultrasound every two years.  And of course the removal made me hypothyroid and I'm on levoxylthyrine for life.
> 
> Not only did the entire experience change me mentally--it gave me a new perspective on life, and taught me who my real friends/family are, but it also has changed me physically. I'm on top of my game medically, where I try and take care of myself the best that I can and monitor my levels on the regular, but am living a new normal where I just don't feel 100% at all anymore. I also feel that my health has deteriorated--on top of the typical hypo symptoms, I also have two other acute conditions--sinusitis and TMJ arthralgia. It gets me down sometimes, but hey, at least I'm still here!
> 
> Just thought I'd share my story. Glad to have found this thread and to know that I'm not alone!!



prprincess, Welcome!!

I understand all of the emotions you have gone through as I did so myself.  It really did change me.  I was diagnosed and had surgery in 1995 and RAI treatments went on through 1998.  I will tell you, I didn't feel well or 100% as you say, for a very long time.  To be honest with you, it's only been since probably 2007/2008 that I actually began to feel back to my old self so you can see that it was probably more than 10 years after my diagnosis that this happened.  In looking back, I don't think I can totally blame thyroid cancer.  I was diagnosed at age 31 and I also had two small children at the time.  Once my treatments were over and I was starting to hum along, I think perimenopause may have just been starting.  At any rate, my lifelong heavy periods were getting me down and I spent most of my 40s in some sort of borderline anemia and I felt awful all the time.  Now that I am in the very last stages of this menopause thing, I am feeling much better.  My periods have pretty much stopped and my blood count numbers are looking SO much better.  Granted, the hot flashes are keeping me up at night but otherwise, I have a lot more energy and stamina.  So while I did blame a lot of my "not quite 100%" on thyroid cancer, I think it may have been other things contributing.  

I do have issues here and there with medication.  Sometimes, I'll just get too hyper for some reason.  Oh and I had a rough year when they pulled Levoxyl off the market and I had to switch brands.  But otherwise, at 52 I am feeling as normal as anyone else I know that's my age.


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## prprincess

Christine said:


> prprincess, Welcome!!
> 
> I understand all of the emotions you have gone through as I did so myself.  It really did change me.  I was diagnosed and had surgery in 1995 and RAI treatments went on through 1998.  I will tell you, I didn't feel well or 100% as you say, for a very long time.  To be honest with you, it's only been since probably 2007/2008 that I actually began to feel back to my old self so you can see that it was probably more than 10 years after my diagnosis that this happened.  In looking back, I don't think I can totally blame thyroid cancer.  I was diagnosed at age 31 and I also had two small children at the time.  Once my treatments were over and I was starting to hum along, I think perimenopause may have just been starting.  At any rate, my lifelong heavy periods were getting me down and I spent most of my 40s in some sort of borderline anemia and I felt awful all the time.  Now that I am in the very last stages of this menopause thing, I am feeling much better.  My periods have pretty much stopped and my blood count numbers are looking SO much better.  Granted, the hot flashes are keeping me up at night but otherwise, I have a lot more energy and stamina.  So while I did blame a lot of my "not quite 100%" on thyroid cancer, I think it may have been other things contributing.
> 
> I do have issues here and there with medication.  Sometimes, I'll just get too hyper for some reason.  Oh and I had a rough year when they pulled Levoxyl off the market and I had to switch brands.  But otherwise, at 52 I am feeling as normal as anyone else I know that's my age.


That's great to hear, Christine!  Promising!! Because it sounds like I'm going through exactly what you were going through. I am indeed "at that age" where I'm starting with the symptoms (flashes, yes!!), have two young, active children, a rather stressful career, etc. so it really could be a combination of everything.

According to my physicians, even though I do have a few acute illnesses and don't feel so great, I am indeed healthy in their eyes and on paper. I hope that things look up for me soon again like they did for you. Until then I'll just keep my head up and will continue to weather through it all! Thanks!!!


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## luvmarypoppins

prprincess - welcome and thanks for sharing your story! I never feel 100% but I have many multiple health issues. Wishing you all the best.

Well I went to the endo yest. Again, the lab did not do one of the tests she ordered. What is up with that place??? It was the tsh and the endo's comment, oh yours has always been fine so we will just do it next time (6 months). Tg is undetectable. The swollen lymph node is still there but has decreased in size so that is good. 

She now want to wean me off one bp med and switch to something else because there is a red warning with the other bp med I take. I said what other med are you considering since you know I have bad reactions to most everything. She said yes, I know you do and I havent figured that out yet!! (Last time she had to ask one of the cardiology drs.)

So I took half the pill and cut it with a pill cutter today. It was so bitter. I quickly swallowed some ice tea. Yuck! I also have to have ds take my blood pressure every other day and call her in a week with the readings. Oh Joy. She suggested coming in for the checks, I said um no ds works at the hosp. etc. 

And in other news the car saga continues. The ins. company gave dh the name of another company. And since the dad didnt think anything of showing up on our doorstep I told dh to call their house last night and verify what he could. The boy wasnt home and dh talked to the dad. He said the kid has no collision so they junked his car for $500. He told his father he got distracted, um yeah right. Even the father doesnt know the name of the insurance company. Its like 2 companies. I told dh I think the kid must be in the assigned risk pool. The dad didnt admit that but told dh he pays for the premium.  So now dh has to call another company (the 3rd one). 

Right now dh is away for the week again to Seattle. At east a guy is going with him for 3 days and then dh is off by himself to San Fran. and LA.

I am still trying to plan the disney trip. Now I am down to knocking one day off the trip. Having to get a limo to the airport and stating the trip a day early. Going 2 nights at the Swan with our miles, going with an ap rate at the Yacht Club for 2 days and then back to the Swan foe the last day. No I am not crazy. Its just there is no room availability thanks to Food and Wine and some big convention I am sure.  I have to verify this with dh and ds3 tonight. My head spins and now I will have to change some of the adrs. 

Trying to be more proactive with the health so I had to call the primary dr. and ask them to mail me a new mammo script since mine expired. Now I am debating whether to go to the creepy place which I can get in right away because its a ghost town there or ask them for my films and go to a better place and might have to wait for an apt., oh what to do???

Check in when you can.


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## luvmarypoppins

Still working on the disney trip. Booked all the hotel rooms and plane tickets last night. Ds got his plane ticket today. Now I need an ap and ds3 needs his tickets so we can do the fast passes.

Oh and today I get a message to call the internist and schedule an appt. I am thinking that was triggered by me requesting the new mammo script. Um, I have told them before I am not going back to that dr. in the group. They can see that in my chart, I have never gone back to her and I am hoping they are not holding the script hostage until I see her or they will get an earful from me. I already told my endo that the internist is too test happy and I refuse to have all the tests she wanted done. Got  to advocate for myself here and I guess I can tell them the truth about her again if they want to hear it.


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## macraven

I would feel the same LMP
Stand your ground on this


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## luvmarypoppins

Well I guess my endo will never learn to leave well enough alone, lol. I called in the bp readings yesterday with the half dose of the one med for a week like she wanted and she called back and left a message that my bottom bp number is too high and I need to go back on the full dose pill of the one med asap. Yes, she should know, my body likes to not get upset by med changes etc., gheesh!!

Dh is alive and well in Calif. He called ins. company #3 and of course got the run around again after holding for an hour, sigh and sigh.

Ordered the magic bands today and now I need ds to get his ticket so we can do the fp. He is resting and its his day off so I dont want to push him too much, but I dont want to listen to him say there is nothing left etc. when he wants to pick stuff. 

My cousin is in Disney now. He is at Pop and stays about 2 weeks because its free dining. He complains about things but he gets action for sure. I know George K. the president of Disney secretary calls him. Last time he told me he called them and complained that when all the family members were together they couldnt get 15 fast passes for the same time. Guess what they got 15 fast passes for the same time. Disney had to personally override something in the system.  This is spread over 3 families. (other relatives - not mine).


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## prprincess

Getting blood work done tomorrow for my yearly endo appointment next week. As always, I'm a bit nervous about the possible change in dosage. And then of course, if she feels that my lymph nodes are enlarged, here we go again with the ultrasounds!  Wish me luck!


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## macraven

Wishing you luck!


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## luvmarypoppins

prpincess - hope your testing went well.

Macraven and singing mom - What are your Food and Wine plans? I want to do a lunch at Chefs one day, DH asks why - arent we eating at food and wine? 

Christine - how are things going??

Well my only thy related news was we got my script today. Glad we have ins. Wowsa, 2 scripts, one was the bp med and the name brand synthroid for a 3 month supply of each was like $170. total. 

And in other news....
I hurt my back/shoulder.. Dot know how. Didnt want to go to the dr. So I had dh put vicks on it, I know strange but it really helped and I took some tylenol pm to sleep at night. I didnt want to go to the dr. as this has happened before and I went to the er and they did a ct scan and said it was just a pulled muscle. I feel the same as then. sigh.Also dh came home home the west coast with a nice cough and cold. He said everyone was sick on the plane, sigh.

His trip went terrible and he has to go back to the west coast prob on thurs, dont know for how long yet. He sure is living out of the suitcase lately.

So happy I didnt renew my ap because now I can and get all the new benefits!!!  Worked out great that I didnt want to bother ds that day. 

My cousin just got home from disney tonight. I am going to e mail him and ask him to tell me everything. 

We are back to ins. company number 2 and them never picking up the local phone, sigh. 

I think we all need a vacation!

Check in when you can.


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## Christine

Hello all.  I've not posted here in a bit as I've been seriously busy at work with end of the fiscal year stuff.  Still hasn't ended but such is life.  I've been spending a lot of time on the MyFitnessPal boards though because about 4 weeks ago, I realized I had just been rapidly gaining weight and it was getting out of control.  I needed to stop it and, now that I'm menopausal it is much harder.  So I've been tracking my calories religiously, eating in a deficit and just started exercising over a week ago now that I am used to the lower calories.  I am happy to say that I have lost about 7 lbs and some of my clothes are fitting better.  But I tell ya, eating better and consciously is VERY time consuming.  I don't mind it right now as it's interesting to me how much I must have been eating before (a lot) but I'm sure it will get old.  So, with the limited internet time I've had, I've been doing that.  

It's all quiet in my "thyroid" world (which is always good).  Nothing else new.  Trying to plan a short trip with my parents to Myrtle Beach.  They are looking for "active adult" communities to move to which are horribly far from me (Myrtle Beach is about 7 hours versus Florida) but we can't seem to get it scheduled.

That's about it for me.  Very boring here...


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## luvmarypoppins

singing mom - Thinking of your dd and hope all is well with her

Christine - thats good you are sticking to the weight loss. I just even havent been feeling like eating all that much lately.
Our friends moved to South Carolina to I think its the Dell Webb place. I am sure it will be hard with your parents moving. Hope they find a place they like.

Thinking of anyone that is in an area affected by the hurricane.

Dh is away on his trip and busy. We are suppose to get rain and wind from the hurricane over the week end at times. After having survived the one with the power out for 3 days I feel bad for everyone.

Just called the dr. about the mammo script. Oh gheesh. I hate dealing with the system there. They said I can only see those 2 other drs, I like if its an emergency. They have to assign me another primary dr. before they will do the script. I only got it because I asked at my ear infection appt. that time. Well I told her there is no way I am seeing Dr. H. so dont bother with her, give me someone else. They said they will call me back. And she made sure she wrote that I do not want to see Dr H. She says, yes its shows you saw her three years ago, clueless maybe??? The system stinks here to say the least. When I first got the endo and worried if I would like her, I asked, what if I dont like her can I get someone else, they said no, they learn your case and you are their patient. I think this is ridiculous. Well if I dont like who they assign me to this time I will ask to switch again. sigh. Guessing if I actually found a lump they would give me an emergency visit. Health care today, or maybe just this place.


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## SingingMom

Just back from 15 days in Orlando area, setting up DD's new apartment and experience first hand "Florida Hurricane Preparation"!  
Luckily we only saw some wind and rain, nothing like what was "expected".  DH flew in on an earlier flight Thursday to beat out the storm.  He was able to hang drapery rods, pictures, and make a major repair to a beloved easy chair DD purchased from Cast Connections that used to reside in the Beach Club! 

I arrived Sept 25 and rented a car for the first time - everything was great until I realized I couldn't lift my suitcase to get it into the car!!  Luckily an Alamo employee walked by and I asked for some help.  It is hard to be under five foot!  

DD's apartment is beautiful. I had a wonderful 2 weeks with her and got a good  feel for the area.  She's enjoying her new job in Children's Activities and hopes to be put on Full Time soon!

Blood work next month for endo appointment.  Echo and stress test also scheduled next month with the cardiologist.  Need to make annual gyno and mammo. appointments too.  Never ending!  

But, now I have to unpack to pack again - weekend in NYC for our 30th anniversary, then a November visit to DD and then she's coming home for Christmas and I'll go back with her for New Years!  DH will try if work cooperates!


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## macraven

I'm still in Orlando and arrived here early in sept 27

Spent a week at the motherland then moved to the darkside resorts

Hurricane was an event I won't forget here

Will be back to posting here after I return home

Do have a trip to Atlanta a week from Friday for 3 days

Later


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## prprincess

luvmarypoppins - blood work was clean. My tumor markers were negative, and my lymph nodes have not grown in size, so that's the biggest relief. I will be 6 years clean on 11/1!

christine - congrats on the weight loss!  And I feel your pain because it is definitely a challenge for me as well. I exercise regularly, but I feel like eating in deficit is the only thing that does it for me.

Singingmom- good luck with the blood work and the endo appt! My mammo is coming up, too.  Definitely never ending!


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## luvmarypoppins

prprincess - so happy you got great test results. That is always such a relief and answer to prayer for sure.  I celebrated 7 years in Jan, 

singing mom - glad you had a great time in Fl with your dd. What were the hurricane preparations like? Just curious? I read your car comment. My best friend is under 5 feet too. My dh and 2 of the ds are on the tall side except for ds3. Hope your dd gets to work full time soon. Have a wonderful anniversary trip! Did you have any favorites from Food and Wine?

macraven - glad you survived the hurricane. I heard food issues were a big problem. How did you do??  Hope you have a great rest of your trip and I cant wait to hear about it.

Happy news all around here today. Just talked to dh and he is getting on the plane. Just got the issues with the dr. straightened out. What a circus that was. The. one new dr. I wanted has retired. Then she told me the dr. who I dont like has to give permission to release me to another dr. gheesh. wth!!! She cant do it this week as she is off for religious observances. She will be back on Monday when I go to Fl, and the secretary says most likely she will say yes. I had only 3 drs. to pick from, then that narrowed to 2 as one was male and then it narrowed to 1 because the other one isnt seeing new patients until Dec. I said, look I need the mammo script way before that. So now she gave me a tentative appt with a dr. in about 3 weeks. I looked her up. unds like I will like her. She graduated with honors from the univ. medical school, spent 4 years in rhode island and is now back here. So she is young and hopefully not test crazy and they will do the mammo script before that, ok. 

Then dh said lying ins. company called him. I guess that  was in response to the massive questioning paper they made him fill out. We also took pictures and have those as proof if need be. But they said they will look at the car again on Monday at the collision center. He will drop it there before our trip and hopefully it will be fixed by the time we get back. This is to the ins. companys advantage actually since dh wont need to get a rent a car which they would have to pay for. So we will see how this all works out long distance from Fl, sigh. 

I still need to get my ap and ds ordered his ticket from work at a discount and it takes 3 days to get the confirmation so we are waiting for that too before the fast passes and I am tweaking all the dining. I am trying to please everyone, not an easy job for sure.


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## SingingMom

luvmarypoppins said:


> singing mom - glad you had a great time in Fl with your dd. What were the hurricane preparations like? Just curious? I read your car comment. My best friend is under 5 feet too. My dh and 2 of the ds are on the tall side except for ds3. Hope your dd gets to work full time soon. Have a wonderful anniversary trip! Did you have any favorites from Food and Wine?
> 
> 
> 
> 
> Hurricane prep at WDW was impressive.  They had everything put away and tied down within a few hours.  on the home front, we just made sure we had the cars filled with gas, some cash on hand, and water.  We also had batteries and I bought a radio.  DD thought I was nuts, but I tried to explain to her that the possibility of days without electric were not a pretty picture!  lol   Luckily it didn't hit inland.
> 
> My favorites from F & W are the chicken gyros in Greece, the potato pancake & smoked salmon (minus the sour cream) in Scotland, the potstickers in China, the lambchops in Australia, the waffles with chocolate sauce (minus the whipped cream) in Belgium, and the escargot in France.  But my FAVORITE is the Veuve Cliquot Yellow label at the "Desserts & Champagne" booth!!
Click to expand...


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## luvmarypoppins

Just looked at the weather forecast, sigh, rain most of the time again for our trip. Guess we will have to break out the ponchos, gheesh seems we did that last trip too and had to cancel our swimming plans twice, looks like we are doing a repeat this trip too. 

I think to make up for it we will have to have some food comas, lol!!


----------



## SingingMom

luvmarypoppins said:


> Just looked at the weather forecast, sigh, rain most of the time again for our trip. Guess we will have to break out the ponchos, gheesh seems we did that last trip too and had to cancel our swimming plans twice, looks like we are doing a repeat this trip too.
> 
> I think to make up for it we will have to have some food comas, lol!!



I wouldn't count on the weather forecasts. It rains most days, but sometimes a quick sprinkle and that's it.  Just go with the flow!  lol


----------



## prprincess

luvmarypoppins said:


> Just looked at the weather forecast, sigh, rain most of the time again for our trip. Guess we will have to break out the ponchos, gheesh seems we did that last trip too and had to cancel our swimming plans twice, looks like we are doing a repeat this trip too.
> 
> I think to make up for it we will have to have some food comas, lol!!


The forecast can still change. And hey, we were rained out during most of our August trip due to Hermine and still had an amazing time. I'm sure that you will, too!! Just pack a few ponchos and go with it!


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## luvmarypoppins

finally an honest to goodness tell it like it is article about thyroid cancer and radiation that was in my yahoo news feed today

I did have some issues with what the lady wrote on a few things.. I guess all doctors have different rules. She said her son was only back after 4 days. Honestly I wouldnt have had him back for a week since he was only 7. I was even telling my college ds to get away from me. Dh is familiar with everything so he knew procedures which I cant comment on because of his job as usual. 

And the dog too. They told me stay away from the pets and the pet hair etc. I think she was a little obsessive about cleaning certain things, spraying Lyol on a mattress ? My dh would laugh at that one himself.

Also she let her little boy hug her around the neck after 4 days wowsa a big no no.

And I almost cringed when she said she threw all her stuff down the garbage chute. Gosh, rad onc said it had to be kept in the garage for 30 days then thrown away, maybe more, I cant remember. 

Also she had to have scans every year. Glad my rad. onc said only 2 cleans and then just blood tests and sonos.

I almost fell on the floor when I read she said she had scoliosis surgery as a teenager and thought that was it. I had the same thing!!!! I also questioned the rad. onc and told her about this since I had so many xrays of my neck and spine since one of my curves was in the neck area, not counting the other 2 curves over 80 degrees of my spine. She said no, hmm. Too much of a coincidence here. 

Well read it and see what you think.


----------



## macraven

Back from vacation and it was not the best I have had so planning another one for early Jan/feb

Presently just planning in my mind but will check flights and hotel resort rooms after my Atlanta trip next weekend

I was at the darkside during Matthew's presence 

Rpr was a good place to be 
Staff was put up in the convention center on cots at night so hotel was not short staffed

Food went on as usual and one restaurant had buffets for all meals

The other two onsite eateries had the usual menus

Had friends at Disney resorts and they told me they bought ($15) surprise food boxes 
Some were not pleased with it

I am actively seeking new docs, especially an endo where I live 
There was one poster here that was going to give me a name of an endo In the Atlanta area
I have not seen it yet but will Reread this thread in case I missed it
Did try to contact the one endo that was mentioned here but they are not taking new patients 

Now thinking of trying Vanderbilt as they have a full department for endo 

Do have my lab requisition for early November and plan to have it done
When I switch endo, will have current labs so can try to start at that point 

Hope all here are hanging in there and doing fine!


----------



## SingingMom

luvmarypoppins said:


> Also she had to have scans every year. Glad my rad. onc said only 2 cleans and then just blood tests and sonos.
> 
> I almost fell on the floor when I read she said she had scoliosis surgery as a teenager and thought that was it. I had the same thing!!!! I also questioned the rad. onc and told her about this since I had so many xrays of my neck and spine since one of my curves was in the neck area, not counting the other 2 curves over 80 degrees of my spine. She said no, hmm. Too much of a coincidence here.
> 
> Well read it and see what you think.



Haven't read the article yet, but your rad. oncologist, I think, was misinformed.  I have read in many sources that multiple xray radiation in the area could be a prelude to thyroid cancer.


----------



## macraven

Back from Orlando vacation last Thursday night
Getting ready to leave for Atlanta weekend mini vacation Friday morning

Hope all are doing fine

I'm still googling endo docs so I can get set up locally 
Tired of communicating with chgo endo

So far all I can determine is to use Emory or Vanderbilt


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## luvmarypoppins

SingingMom said:


> Haven't read the article yet, but your rad. oncologist, I think, was misinformed.  I have read in many sources that multiple xray radiation in the area could be a prelude to thyroid cancer.



Yes I think she was. I even have 2 folders of my old xrays as a teen to prove it. Well she did write some chapter in a thyroid cancer book. I think she might have retired now. I dont know. I really didnt get along with her at all. It was like a love hate relationship. Loved it when I didnt have to see her and hated it when I had to see her, lol! She just lacked compassion. I am like a peach personality. I need the compassion and encouragement, especially when it involves the Big C word!!


----------



## luvmarypoppins

macraven - hope you enjoyed your trip and can find a endo who you can work with.

Well we are back from the vacation. All in all it was a good time. Poor ds3 went there with a really bad cold. He was miserable up until the 3rd day. He pushed me alot. I usually walk alot with dh but ds3 wanted to do so much that there was no way I could walk and keep up with him. He would go back and forth at the parks where dh and I would usually take it easy and do less things and make one loop or stay in one area. 

It was hard changing hotels 3 times but it was necessary to get a room and that conference at the Swan and Dolphin we had to deal with. Ugh. Lots of music to wake us up. Tons of people to get by if you didnt time it right etc. But we did get to swim in storm a long bay twice. 

Ate lots of stuff at food and wine. My favorite was the chocolate nitro thing and the lobster roll as usual. Eating a lobster roll and listening to Chris Cross singing Sail Away in the background - doesnt get any better than that!!

Food wise - liked the new Jungle Skippers place, ate at Ohana with perfect timing to see Hallowishes from the restaurant (not the greatest view but still great), I got sick from the food later, dont ask, the usual gastro stuff. I knew my stomach would not like the spices and I even tried to drink milk with it. Ate some pizza from the Boardwalk pizza window, first time and it was terrible! I guess we are officially NY pizza snobs! At the Yacht Club we got upgraded. I dont know if it was officially a water view or garden view, but right to the right of our balcony was the wedding area and we looked right across crescent lake, awesome room view!!  The Swan rooms were ok. An inside view of their resort and the other room I didnt get a chance to look at. They gave us a semi handicapped room, didnt ask for this but it was only for one night. It had a weird bathroom sink setup and at least it didnt have a walk in shower.

Got to ride Frozen, I didnt want to do this. It was ds insistence. It broke before we got on but we waited. Its a one and done for me. They both had to help me in and out and the plastic hurt my knees. We all loved the new Soarin and ds and I did the AK at night, loved the tree but we didnt do the night safari. Seeing all the Halloween costumes was fun. My favorite was Buddy the Elf. That guy was so spot on and funny. 

While we were there ds found out a boy in his elementary school class passed away. This is the 2nd boy from their school who passed away in the last two months. He unfortunately made some bad life choices as well as the first boy But this one was married with a little girl, just so sad. Oh and on the good news front - our van is finally getting fixed. The lst estimate was 3900 and now its over 6k. Guess it was much worse than we thought. This insurance company gets one star on yelp and they said all the stuff dh has had to deal with, lies, non return of phone calls, non picking up of the phone, getting cut off on purpose , etc. Thank God we werent injured. I cant begin to think what a nightmare that would have been. 

Well Halloween day I am getting a big treat. I have to go see the new dr. who is holding my mammo script hostage. This should be interesting. I am having dh stick to me like glue especially since I dont do well with drs. He also needs to get a new dr. He goes to another part of the univ and I dont know if he should switch to this area since they focus more on older patients. He does like one dr. there who I saw during a sick visit. 

Hope everyone is doing well.


----------



## prprincess

SingingMom said:


> Haven't read the article yet, but your rad. oncologist, I think, was misinformed.  I have read in many sources that multiple xray radiation in the area could be a prelude to thyroid cancer.


Is this article still up? I am curious because both my cousin and I had our tonsils taken out in the early 1970s as little girls. We both had several sets of xrays done and we are both the only people in our family with these issues--I had thyroid cancer and my thyroid removed, and she is in the process of having her right lobe removed due to cancerous nodules.


----------



## luvmarypoppins

The article was from Yahoo Health News but they said it was originally from Prevention Magazine.

Very interesting observation prprincess.


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## luvmarypoppins

Well Happy Halloween to all the thyroid peeps here.

I liked my treat today alot. Hmm, looks like I am really going to like this doctor for a change. She is cute, perky and full of energy and thank God not test crazy like the other dr. She does have one annoying habit, she talks pretty fast and was walking around alot.

She only ordered the cholesterol and diabetes blood test which the endo does not do. Got a flu shot and got the mammo script.

Only negative things she said was lose weight and get a pap test. Um, I think she got the message I was not thrilled to hear about going to another dr. again. I tried to tell her I avoid that dr. as much as possible and anyway the one I went to in that group left too so it would be someone who took over for her if even that person is still there. Unfortunately with the teaching hospitals I see alot of the newer drs. are just using this as a place to put on the resume and if something bigger and better comes up then they are so out of here, same with other young ones in different professions today too.

So I hope in the future I will get along with this dr. She said she will call with the blood tests results and the mammo results.


----------



## prprincess

Good afternoon, thyroid peeps! No news on my front. Just wanted to share that today marks the 6th anniversary since my cancerous thyroid was removed. My life is definitely no longer the same, but I'm grateful to still be here! Hope you're all having a great day!


----------



## luvmarypoppins

Congrats prpincess on the 6 year anniversary!  That is so awesome. I called it the cancerversary (credit to Anne from the Breast Cancer Thread). 

And in the newest treat department that dh got in an e mail yesterday. His work told him that in order to avoid layoffs and due to the reduced funding the place got they are all going to get a nice 1% raise next year. So it doesnt matter if you are a good or bad employee, work your tail off or not, that is what you get. It will probably be a negative number if our healthcare costs go up. I havent gotten or read that stuff yet.


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## Imzadi

Hi! I'm new to the thread.


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## Christine

Imzadi, that sounds awful.  Unfortunately I have no experience with a compounding pharmacy.  I thought at one point I would because I felt like I was having issues with the fillers in Synthroid.  For me, it is the povidone.  So I used Levoxyl for years, but then it was pulled off the market for awhile and I went through a series of T4 replacements and conversed with lots of pharmacies in order to find one without povidone in the filler.  It was a nightmare.  I finally did get back on Synthroid and have been absolutely fine with it.  But it is stressful not to be able to get your meds when you need them.  I assume you  have researched all brands/generics of Cytomel to see if there is someone who makes it without the acacia?


----------



## Imzadi

I have only started to research alternatives.


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## luvmarypoppins

Imzadi - I hope the new pharmacy works out for you. I know there is one her by me in LI that compounds but I only had them order a special drug for me once since they had to get it from Canada and no chain around here stocked it, but it was not a compounded drug script. Wishing you all the best.

I need to work on the mammo and blood test stuff. Maybe next sat. Add to that the eye dr. and dentist too.

Our van is finally fixed and looks great again. 

And since dh had the day off yest. we booked the disney trip for Dec. 12-17. We are staying at the Swan, of course our deluxe lite and money saver. The 14th was sold out so I had to use dh ff miles for that night. Glad I always keep some on hand. My new mindset is just to book the cheapest room. We dont actually stay in the room long enough to care about the view. 

The dining stuff was slim pickings so I just took what we could get. Early dinner Mon. at Rose and Crown since our flight arrives at 9:30 am. Tues. 13th, tues. early dinner at LTT and then going to MVMCP, wed. we are eating at 1900 Park Fare. Did this because I want to see the christmas tree and gingerbread house and didnt want to make an extra trip here just for that. Never did the dinner so we shall see. I hope its not too kid crazy but I am sure it will be. I just wasnt liking the menu at citricos all that much. Thurs. I hope we can make it to see the new show at DHS and then we will have a late dinner at Via Napoli. Not liking this too much either but the Trattoria Al Forno times didnt work out for us and then Friday we are having an early breakfast at Captains Grille and having the candlelight package so we can see the 8:15 show. Again I picked this to save the most money. The lunch options were almost $50 each and the breakfast cheapest price is $27 so we took it. I did ask dh who he wanted to see either Meredith Viera who we saw before and was good or Jim Cavezeil who played Jesus in the Passion of the Christ. He said, lets go with Jesus this time. Also the first night we are there is Robby Bensons last night, maybe we can just go by and listen. I am sure his voice will be fantastic since he did the Beast voice.  I am all about saving money these days. I got dh flight down free from Southwest points. So we shall see how all of this works out. Still need to get the christmas party tickets, renew dh annual pass and make the fp times.


----------



## SingingMom

I leave Saturday for a quick four night visit to see DD.  We are going to meet up with our ABD guide from Central Europe, who will be in town from the west coast.  We are planning on seeing the new Christmas show at HS and the new projection show at MK before Wishes.  Since DD is working on Thanksgiving and I am returning home the night before, we are going to Liberty Tavern for an early "Thanksgiving" together.  She's coming home for a week at Christmas (yippee!) and then I'll go back with her for a week.  DH is very busy with work, so I don't think he'll be able to join us for the New Year's trip.  Starting to think about Italy ABD for May/June.  Checking when DD can take the time off to accompany us! 

Echocardiogram & stress test Friday.  Endocrinologist when I return from Florida.  DH's insurance changes January 1 from United Healthcare to Aetna.  Not looking forward to switching pharmacy and mail order Rx.


----------



## luvmarypoppins

singing mom - I would like to know how the HS new show is too. Let us know. I am also wondering where a good view would be with keeping in mind we want to high tail it out of there and get in line for the boat back to Epcot. We are with you in the LTT dinner. 

We have Aetna right now too and I dont know if we will still get that in Jan. I havent read all the lovely literature that dh gave me. They are making us get the meds through cvs for 3 months. I have never done mail order with Aetna or from Cigna or any other ins. that dh had. I dont even know what ins. co.s are our choices for next year yet. The place is all about saving money too. 

Have a great trip.


----------



## macraven

Hope you have better luck with Aetna than what my son has

Since his insurance changed to Aetna, past meds are not covered by them
Makes him a cash customer for it now


----------



## macraven

does anyone here have PTH issues?


----------



## luvmarypoppins

macraven - I had to look u what that meant. I know there was a young girl who posted on here quite a while ago. She lost some of her parathyroids during the cancer surgery. I know she had a lot of issues with tingling in her hands and had to take calcitrol. 

Hope everyone had a nice Thanksgiving. We had ds2 gf over. She is quiet and nice. She is gluten free so she couldnt eat some of the food we had but she did ok. 

Think I am getting a slight cold that I probably got from ds3. He is applying for the masters program in family nurse practitinor. I hope he gets in this time. It is just so competitive.


----------



## macraven

LMP
I looked thru this thread off and on but did not notice the mention of PTH

If you find that post, please direct me to it

I know the parathyroid glands have nothing to do with the thyroid gland

Received my lab results and my dosage of synthroid is being adjusted again 
This makes it the 6 th time in the past 34 months

Since I have been unsuccessful with finding a new endo in my area, will need to stay with mine up in Chicago land until more lab tests are done


----------



## luvmarypoppins

dischick4778 said:


> I have been reading all your posts but have been in denial lately.  Since I went back to work and things have been kind of normal it is easy to pretend like this thyroid thing never happened.  And then someone asks about the scar on my neck.  Back to reality.
> 
> I had my first endo visit this past week.  She says the numbness I feel is due to lack of calcium.  She thinks the parathyroids have basically died off and apparently they control how your body absorbs calcium.  So now I am taking calcitriol (a prescription to help calcium absorbtion) along with 2,000 mg calcium every day.  Additionally she changed my synthroid dosage from 150 to 188.  I recently met someone taking natural thyroid.  Anyone have experience with this?  I asked my endo and she said it isn't controlled enough or studied enough for her to trust it.  But the woman I met who takes it swears by it.  I don't know much about it.
> 
> Anyway, hope you are all feeling and doing well.



macraven - here is something. As you see it goes back a bit. I miss Jenn and hope she is doing ok. She is from my neck of the woods.


----------



## luvmarypoppins

The whole thing is on page 54 of the thread


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## luvmarypoppins

macraven - have you checked this dr. out - Rachel Derr MD in Atlanta. She gets mixed reviews but saw she was rated a Castle Connolly top dr. and that is big around here. They extol the drs. award and virtues if they get that distinction at the university hospital and also the drs. that get that are the hardest to get into see too. A John Hopkins graduate too. 

Hmm, we all need to help you find an endo!!


----------



## macraven

So very much!

If anyone can come up with other endo, would be very much appreciated

The ones I contacted in Atlanta/Emory were not taking new patients or had no openings until late March 2017

My issue is too much calcium in the body is quickly released and my last test will be the key how I will be treated
But it is a 14 hour drive from Ga to the endo up north and I can't continue flying up there


----------



## luvmarypoppins

alrighty as ds 2 would say...here's another
Dr. Jennifer Gilligan in the Atlanta area I think


----------



## luvmarypoppins

Macraven -Any luck with the endo quest?

I finally made the mammo appt. for sat. I also tried to make a blood test appt. at 2 places, one is actually in the bldg. where the mammo is, but there are no appts. So I tentatively made one for next. sat. at our usual place. I have never seen it this busy. The only thing I can come up with is that everyone is trying to use up their health care spending accts. before the end of the year maybe?? Or if they know their ins. plans are hanging to less coverage or higher costs for tests.

Still need to get dh ap and the mvmcp tickets and the fast passes. We only want them probably for soarin and buzz.


----------



## macraven

I agree 
Many peeps do the doc appt, lab tests, etc by dec 31 each year

Lots of peeps out it off and then realize they still have finds I'm their health spending accounts

Nope, no luck yet on the endo

I had more lab requisition out in the mail last week and since I have not received them yet, called the Chicago endo

They said I should have received them by now and will resend another set

So another wait for me to get the last lab test done

I always fret about receiving important mail in December each year
The high volume of mail being sent then makes me know there can be some oops in getting it all delivered


----------



## DreamFlightCpt.

Diagnosed with papillary thyroid cancer on Halloween this year.  This was after having a nodule detected 4 years ago that grew into a cyst that was finally removed a week before haloween.  Lobectomy was done on the right side of the thyroid since the cyst was so large it was pushing my trachea over.  it was only after it was removed and biopsied that cancer was found.  Left side of thyroid was removed and tiny carcinomas were found in there as well.  Odds look good for them getting all the cancer out.  Just need to wait until my first lab in January and see what results are.  Of course, now that I'm sans thyroid, im instantly hypo and have been prescribed Synthroid.

Question is, what is the best way to take the Synthroid so it can do its job?  I'm taking it on an empty stomach first thing when I wake up with plenty of water, waiting at least an hour, sometimes more to eat anything.  I then take supplements (multivitamin, calcium) at least 4 hours after that with food.  Just want to make sure I'm doing it right now.  For a little while I was taking all supplements at once with Synthroid until my endochrinologist said to stop because it was negating the effects of the Synthroid.  I was feeling tired and weak and gained weight, but was also on a lower dosage while I was doing this.  My dosage has been upped and I've been taking everything as described earlier, been feeling better but still gaining weight even though diet has been improved and exercise upped.


----------



## macraven

Since my levels vary on draws, my endo has me take my synthroid at 10 pm
No food two hours prior and no food one hour after taking synthroid

This way of taking my snythroid has been beneficial

Been on synthroid for 28 years now

In the beginning I did take my meds in the morning and did not wait an hour before I ate
Also took other meds when I took the synthroid 

Changed to the above schedule at request of endo which helped my levels be more effect


----------



## luvmarypoppins

DreamFlightcpt. - Welcome. It sounds like you a doing a good job with your med. I have been on it for almost 8 years. I dont like water so I probably don't take enough with the med and I always wait an hour to eat unless there are extenuating circumstances. Sorry you are dealing with the tired (hypo) issues. It does take a while to find the right dose. I am on 150 mg and my endo refuses to change it. I am constantly tired but I think at the higher doses I was getting hear palps and too edgey.

macraven - sorry for all you are going through. I hope you can get an endo to work with you closer to home. I did see another one in Atlanta who is highly rated - only problem is she is with the VA Hosp. Did I mention my friend is a social worker at the VA Hosp. in Atlanta? I dont know if the drs. they have there are just exclusively for the VA?

Christine - wow you sure have a lot put on you with that party. I hope it all turns out well. I am sure you will be exhausted by the time it is done and I hope everyone appreciates all the time and effort you put into it.

singing mom - How was your trip to see your dd? I hope you had a great time. 

Well today I made the reservations for the towncar in FL and the wheelchair rental. I have to talk to dh about maybe changing some dining and then doing the fast passes. I am constantly watching the weather and of course it changes,but so far the current one looks pretty good. It is supposed to rain and snow here the morning we leave, perfect timing, but hope the roads will be o.k. The local airport is only 20 mins.  from our house and the car service is coming at 5 am.


----------



## Christine

DreamFlightCpt. said:


> Diagnosed with papillary thyroid cancer on Halloween this year.  This was after having a nodule detected 4 years ago that grew into a cyst that was finally removed a week before haloween.  Lobectomy was done on the right side of the thyroid since the cyst was so large it was pushing my trachea over.  it was only after it was removed and biopsied that cancer was found.  Left side of thyroid was removed and tiny carcinomas were found in there as well.  Odds look good for them getting all the cancer out.  Just need to wait until my first lab in January and see what results are.  Of course, now that I'm sans thyroid, im instantly hypo and have been prescribed Synthroid.
> 
> Question is, what is the best way to take the Synthroid so it can do its job?  I'm taking it on an empty stomach first thing when I wake up with plenty of water, waiting at least an hour, sometimes more to eat anything.  I then take supplements (multivitamin, calcium) at least 4 hours after that with food.  Just want to make sure I'm doing it right now.  For a little while I was taking all supplements at once with Synthroid until my endochrinologist said to stop because it was negating the effects of the Synthroid.  I was feeling tired and weak and gained weight, but was also on a lower dosage while I was doing this.  My dosage has been upped and I've been taking everything as described earlier, been feeling better but still gaining weight even though diet has been improved and exercise upped.



DreamFlightCapt:  sounds like you are now on the right track with your medication.  I always take mine in the morning.  Due to my commute, it might be almost 2 hours before I put any other food or drink in my stomach.  Of course, on the weekend, I am *bad*.  I usually take my Synthroid and then have hot tea about 30 minutes later.   Been doing this for over 20 years and I'm pretty stable so it must be okay.   Your thyroid diagnosis sounds a lot like mine.  I had one lump on one side and had a lobectomy which was found to be cancerous.  They had to go back in or a second surgery to remove the rest and small areas of cancer were found in the remaining lobe which gave me the "multifocal" diagnosis.  

LMP:  the party was a hit as was the punch recipe I got from the DIS.  I can't believe how many people specifically came up to me to talk about the punch.  I think punch is a little-done drink anymore and us old ladies miss it!!!  I am glad it is over.  My boss of 9 years has retired now so maybe things will start getting back to normal, although now we have to break in the new boss!  This week we have our bowling Christmas party which should be fun and then all the hullaballoo is overwith.  My son will be coming home on 12/17 for the break and we will spend it going to different doctors for all of his issues (pulmonologist, ENT, dermatologist) etc.  

Otherwise, not much going on.  Just trying to use up some vacation days so I have a lot of 3 and 4-day weekends up through the first week in January.  I need it.  Yesterday I spent the day wrapping gifts and today I spent hours returning things I bought on line that just weren't quite right.  I love the convenience of online shopping but I just need to look and feel something and oftentimes, it just doesn't work out.  Oh well.

I've been feeling a little heart palpy lately.  I am down to about 100 mcg of Synthroid (used to be on 125 mcg).  Menopause has caused a change for me in my dosage.  On top of it all, I have lost about 15 lbs due to actually not pigging out all the time so I think I may actually be a little overmedicated.  But I don't see the endo until early February.  It's not too bad so I'll just deal with it.


----------



## luvmarypoppins

Well we are back from Disney

First the medical stuff - mammo was good. I guess all the pain I have is still all the scar tissue wrapped around the nerve
Blood tests - Just noted the cholesterol is not great and pre diabetes as usual. hat has not changed in 3 years. The nurse called about the mammo and they sent a letter about the blood tests, Hmm, I guess this is what this new dr. means when she says I will call you with the results, one small step for non personal dr. with patients. Unfortunately this is the way with the drs . at the univ. hosp. Ds3 can now attest to that even in the hospital. I just wish these drs. would show a little compassion and try to relate or connect to their patients. Ds said the dr. even treat some of the nurses badly. He filed a complaint on one of them. 

Disney  Great weather. Unfortunately dh and I both got sick from 2 places - 1900 Park Faire and Rose and Crown. I will spare the details. I need to see the gastro. Taking away my protonix was not a good idea from the endo. 

Small world moment - we were walking around at MVMCP around 11 pm and dh commented, oh look triplets. He saw a stroller, The guy said heah are you the S's. Yes thats us. It was a friend of ds1 who was on the basketball team with him in hs. He lives down in Fl now 35 mins from Disney and they had IVF triplet boys who are about  months old I think,. Adorable. They all look like the mom. She seems sweet. I have seen pics of her before. 

Loved the candlelight processional and Jim Cavezeil. I stayed in the wheelchair because the bench hurts my back. We lined up an hour before and it paid off. We were seated front aisle looking right up at the conductor.  We didnt do all we wanted to. I liked the groups Joyful and the Holiday Voyageurs from Canada. Had good meals in Chefs de France, Cape May, although dh said the crab legs were not great this time and LTT was ok, not great. Breakfast at Captains Grill for the candlelight was crowded and we did breakfast at Garden Grove at the Swan too. 

I even got 4 mosquito bites and then we came back to snow. sigh. 

Merry Christmas and Happy Holidays if you celebrate something else.


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## luvmarypoppins

Well Happy New Year everyone

Unfortunately mine is not starting off well. My disney loving cousin called me today and said his son died new years eve. So sad. He was struggling with life for quite a while. He was around our ds age and he is the one who used to live in Hawaii that dh and the 2 ds went to visit. He just went with his family to disney in the fall. Ds3 is home today so he heard it, I will tell the others tonight. They arent having any kind of service. So hopefully we can go and visit them in the near future. I will send a fruit/plant basket I guess and I told ds to make up some kind of collage with pictures of them if he has them from their trip. My heart is breaking. I think he was about 27. Just so sad.

Also my bf from hs told me her husband was dx with prostate cancer so now they are on that journey. Maybe we can see them too. We need a long week end in NJ for sure because I want to see my aunt too.

Poor dh had a massive infection in his jaw/tooth. He was having problems before we left for Fl, in Fl he was complaining but not that bad. He went to the dentist when we got back. He said the infection was massive, in his ear canal and heading up to the brain in a short time, omg!! Did a little work, sent him to an endodontist who also commented on the massive infection. He had some of it drained out, was on antibiotics and has to go back this week for more work. They said if they save the tooth it will cost us something like $2500!! Wowsa.

Ds3 got an award for employee of the month on his floor. He works hard and deserves it. Some other nurse complained to him and said, I have been on this floor for 10 years and never got that award, oh well. Ds has had a lot of sick patients lately and some have passed away, so its been tough on him too. He is not interviewing for the pediatric position he really wanted because it turned back into a night position, oh well. 

Just trying to keep healthy because if I get a cold the coughing is just horrid on the neck dissection. 

Check in when you can.


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## prprincess

DreamFlightCpt. said:


> Diagnosed with papillary thyroid cancer on Halloween this year.  This was after having a nodule detected 4 years ago that grew into a cyst that was finally removed a week before haloween.  Lobectomy was done on the right side of the thyroid since the cyst was so large it was pushing my trachea over.  it was only after it was removed and biopsied that cancer was found.  Left side of thyroid was removed and tiny carcinomas were found in there as well.  Odds look good for them getting all the cancer out.  Just need to wait until my first lab in January and see what results are.  Of course, now that I'm sans thyroid, im instantly hypo and have been prescribed Synthroid.
> 
> Question is, what is the best way to take the Synthroid so it can do its job?  I'm taking it on an empty stomach first thing when I wake up with plenty of water, waiting at least an hour, sometimes more to eat anything.  I then take supplements (multivitamin, calcium) at least 4 hours after that with food.  Just want to make sure I'm doing it right now.  For a little while I was taking all supplements at once with Synthroid until my endochrinologist said to stop because it was negating the effects of the Synthroid.  I was feeling tired and weak and gained weight, but was also on a lower dosage while I was doing this.  My dosage has been upped and I've been taking everything as described earlier, been feeling better but still gaining weight even though diet has been improved and exercise upped.


Similar story...thyroid cancer as well, back in 2010. Full thyroidectomy and radioactive iodine therapy administered three months later. I take my Levoxylthyrine first thing in the morning and wait about an hour to eat, as well--I was told that this was the recommended way to take the medication. Once you're on the meds for some time you will feel that your weight will stabilize. With me, it took about a year for my body's changes from being hypo to kick in, so I felt great. But after a year or so things normalized, and while I did gain weight even after watching what I ate and exercising, I'm happy to say that it was a short-lived change in my body. Now I'm not down to my pre-cancer weight, but at least I've been stable for a few years now. The one thing that has never improved is my fatigue, but six years out, I've just resigned myself to it.

luvmarypoppins - hang in there!! I have faith that things will get better.

Nothing major going on here...I have some annual medical testing coming up. Hope everything is clean! I've also been concentrating on finding a new job, as I've been so unhappy at my current job and it's really starting to affect my personal life.


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## Christine

Hello, everyone.  Hope everyone is well!

Just got DS packed off and headed back to school for the next semester.  Only three more to go until he graduates.  He had an interview in Richmond for an internship for the summer.  He really liked the company and the interview went well, but we are about 2 hours from Richmond so not an ideal situation.

Otherwise things are going along well enough.  I've had a lot of time off over the last two weeks.  I had "use or lose" leave that had to be used by this past Friday so I was hardly at work in December it feel like.  Not sure that I can work a full 5 days in a row next week. It's going to be tough.  

So far we've had a pretty mild winter here as usual, but the cold snap came in over the week end and we had a dusting of snow on Saturday.  This is the time of year that I absolutely HATE.  At least 3 months now of pretty biting cold weather.  Depressing.

Thyroid-wise, I guess I'm doing okay.  Had some labs done about 2 weeks ago because my heart rate seems very low.  I'm in the normal range for thyroid and bordering on being a little hyper so it's not that.  I guess it's the weight loss and exercise but, man, seems like a big difference.  My endo seemed thrilled when I told him what my heart rates had been.

Now, I've got some rash.  It's not hives and doesn't itch but I have lots of small bumps all over my back, chest, stomach and somewhat on my upper arms.  I think it's because I bought some Gain detergent while my son was home to get the smell out of his stinky clothes, but I just really don't know.  I always have these worries that all of a sudden I will become allergic to the dyes in my Synthroid or something.  Yes, I know, I'm a hypochondriac!!! I can't help it.  

Hope everyone stays warm!


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## SingingMom

Happy New Year to all.  I haven't been getting updates for some reason, so I'm a bit behind.  LMP - I'm so sorry your husband had such a terrible infection!  Very scary!  Sad about your relative.  My heart breaks when people feel hopeless.  I hope his family is doing better.

DD flew home for Christmas and it was terrific!  She was so happy to see her puppy - 13 years old and going strong - and she hadn't seen my parents in 9 months, so that was good.  We had everyone for Christmas at our house - then to one of my brother's for the day after (dad's birthday).  She caught up with some friends; her college friend drove down from Connecticut to ask her to be a bridesmaid in her August wedding.  We went to the theatre and saw the national tour of "The Bodyguard" starring Deborah Cox.  Wonderful.  I flew back with her and spent a week in Florida.  I kept busy getting her some new furniture, having her car serviced, cooking and freezing some meals for her, visiting with some of our friends, and just enjoying a few park days.  DH wasn't able to get away from work, but he was able to take some days off while she was home.   I'm going back first week of Feb for the new Arts Festival in Epcot.

Hope all are feeling well.  My endo and cardo appointments were all good.  Have to make that dreaded gyno appt. soon!  lol   Also need to have an eye appointment, but I'm not ready for the needed cataract surgery, because I don't want to be on flight restrictions just yet.  I have plans to see DD and then we are *hoping* to do an Adventures by Disney trip to Spain this spring/summer!


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## luvmarypoppins

singing mom - Would love to hear what you think of the new arts festival. That sound different for sure. Hope you enjoy it.

Macraven - how goes the endo search? I know you were mentioning Vanderbilt. Is that a possibility or too far away??

Christine - reading anything good. I signed up for 40 on the goodreads yearly challenge. I am on book # 3 so far I think. I only average 1 a week usually.

Hope everyone is doing well. Check in when you can.


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## SingingMom

Yep - Looking forward to the Arts Festival.  Annual Passholders were able to reserve a limited available reserved seats.  I like the idea of being under the overhang if the weather changes.  We are going the night that Kevin Massey is performing -we've seen him in Memphis, A Gentleman's Guide, and several concerts.  He's married to Kara Lindsay (Newsies, Wicked) and he played Tarzan in Germany & Broadway.  Very sweet guy. 

our friend will be in Disney while I'm there so that will be fun.  Just wish DH could take some time off to join us.  But...  we are very excited about May - going to Spain with Adventures by Disney!


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## macraven

checking in !!

singingMom, i'll be there also for the Arts Festival.
have looked at some of the info and think it will be a nice thing to hit while in epcot.

LMP, have struck out finding an endo
the ones i tried to get have long waiting periods.
since i don't have an internist, i can't get a referral.
with a referral, it is much quicker.

did go to an urgent care walk in and got a referral for an orthopedics doc.
only took 2 days to get in to see  him.

looks like i might need a total knee replacement.  did the monovisc injection thursday and hope that will help or prolong having the surgery.
now to find an internist down here.

still using my endo up north and have an appointment to see her june 2.
we go back north once a year to see the kids and do my yearly check up with doctors then.

truly love the weather in Georgia!
can't believe i suffered all the years up north with cold weather, ice and snow.


hope all is going fine with everyone here!


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## Christine

Hey everyone, hope all is well.  Not much going on here to report.  Just *finally* trying to get back into a routine after all the time off on through Christmas, then the holidays, then we had an inauguration holiday and DC was in shut down mode.  NOW, things get back to normal.

LMP:  I haven't read anything interesting in awhile.  I didn't sign up for any challenges this year because I can't ever meet them anymore.  I'm also trying to do less sitting and more moving so....

Endo appointment is in 2 weeks but I don't expect anything new there as I'm not really due for anything.


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## luvmarypoppins

singing mom - I hope your trip went/is doing well. The weather is probably great

macraven - hope the inj. helps your knee and you have a good time at the festival too

Christine - hope your endo visit goes well

Well ds1 has the flu and is miserable. Ds3 took him to urgent care the other day. Of course he did not get a flu shot when he should have. Now dh is coughing like crazy and had a fever yest. He had a flu shot. I am trying to get him to go to urgent care too but so far no luck. I guess I will be in line to catch something from one of them sooner or later. I just dread coughing with the neck dissection.

We had 15 inches of snow yest. Ds3 made it to work yest before it started and said the roads were cleaned well enough when he came home but he drove really slow coming home. 

Ds3 and I went to see ds1 coach the basketball tea the last week. They lost but it was fun to watch.

No tests for me till next month, yippee!!

Check in when you can everyone. Hope everyone is doing well.


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## macraven

LMP I really hope your son and now your husband feels better and improves quickly

I know you don't want him to "gift" you with the flu....


I watch the weather channels all the time
Saw how awful it is for you and others in he NE areas

That is a lot of snow to deal with
You know it won't be all cleared right away

This is the main reason we left the North
I just could not deal with snow and sub temps any longer

Had a nice time at Disney
We rented a wheelchair everyday and son was the pusher 
I could not have stood or walked all day and evening long without it

The monovisc injection gave about 75-80% relief 
Now that I am home, only have about 50% relief
Was told by doc that some people can have relief for about 6 months but others can only go 1-2 months and it no longer be effective 
I have 5 bone spurs on one of the knees and bone on bone

The orthopedic group put me in a high risk standing and I will see another surgeon in the group end of the month

He is backed up for surgeries for 3 months at this point

My hope was to have the surgery after my booked oct 1-15 trip but think it will be earlier than that

Really dont know what to do about that fall vacation 

Christine I bet you enjoyed having lots of paid time off of work in December & days in January 

Now I bet you are back to normal and busy at work

Wish you good news with your upcoming endo visit


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## macraven

My endo in Chicago never allowed me to have the flu shot
She said those with hasimoto can't have those flu shots
  (I do have the hyperparathyroid as my primary condition but did not think that had any bearing on shots)


Have any of you been told that?


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## Christine

macraven, I never heard that you couldn't have the flu shot with Hashimoto's.  Maybe because Hashimoto's is an autoimmune disorder and the flu shot works with your immune system that they would be concerned that stressing the immune system could make the Hashi's worse?  Who knows.  

In my mind, the jury is still out on flu shots!  Of the people I know who have the flu some got the shot, some didn't.  Who knows. I think if you do well with shots and no other issues, it's probably a safe bet to get the shot.

My endo appointment was uneventful.  I had labwork done back in December so he didn't feel the need to do it again.  We did discuss me trying a dye-free, povidone free thyroid tablet due to odd skin issues I get (I am pretty sure I'm allergic to large amounts of povidone).  So he prescribed Levoxyl.  Well, can't get that.  It's on backorder with no time in sight for it to be in.  Something has been up with Levoxyl for years now.  Endo then sent a script in for Tirosint.  I've tried that before but, man, I got a lot of "rushes" on it.  I think I was on too high a dose when I tried it before. He did prescribe a lower dose for me.  I'm deciding whether I want to subject myself to the change in meds.  Doctor was VERY impressed with my weightloss.  I was surprised when he remarked as I had forgotten I was 16 lbs heavier last visit.

The weather here has been SO mild.  I can't remember a winter this mild.  60s and 70s in February---normally we are in the 30s, if not lower.  You'd think I would get outside and exercise more, but I'm as lazy as ever!!


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## macraven

Thanks for your info Christina!

When our insurance changed years back(20), I had to see a new doc

He told me he only allows Levo and not synthroid which I had been on for years

For two years I was on levo and suffered as the med was not the correct one for me

Gained 25 lbs, was depressed, body functions did not work right and always constipated and sluggish, sleep was hit or miss, etc

When his insurance changed and we went back to original bcbs, was able to go back to the endo

Went back on synthroid but it took some months for my body and mind to get back to normal functioning again

I'm afraid to be switched to another drug for my hasimoto.

Have not found an endo so still using mine in Chicago
But she is having me do labs every 3 months as she is changing the dose and watching my levels

With the vit d defiency and the hyperparathyroid as primary problem I have, my test results change each month on thyroid levels


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## SingingMom

My mom and sister are RNs and they have always been anti-flu shot, so we've never had them in the family.   Unfortunately this month, Dad came down with flu and it went into pneumonia.  Hoping we can keep him out of the hospital (he's 79 and has prostate/bladder cancer)  He's been doing so well until now.

Florida was glorious.  Had a beautiful time with DD.  Ended up extending my visit a few days because DD had a tire blow out the day before I was to leave and she was a bit shook up.  I was able to take DD to work and the car to the dealership to get fixed.  Due to the weather, JetBlue didn't charge me to change the flight.  I spent the last two days poolside while DD worked!  This North East weather is the pits.  I can't wait for DH to retire! 

Arts Festival was a bit of a dud, in my opinion.  Looked like they tried to throw something together too quickly, and it was like a "flight of ideas", not really cohesive.  The BEST part, however, was the "Disney on Broadway" feature.  We saw Kerry Butler and Kevin Massey perform.  We know Kevin through various works in NYC and were thrilled to see him.  We watched the performance twice and were able to chat with him later.  Such a talented, nice guy.

Still need to make some doctor's appointments.  I've been too busy gallivanting!


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## luvmarypoppins

singing mom - glad you had a great trip. Sounds like you are done with the weather as we are too. 

Well my dh got the flu too. I slept with a mask on for 2 days because I didn't want to catch it. He is recovered now. Glad he had 2 days off from work since it was closed due to all the snow. 

I am thinking of having our disney trip later in May so we can see the Rivers of Life possibly. It will also depend on hotel prices and flight prices as well.
Need to get in a little pre planning phase.

I always enjoy seeing the Flower and Garden festival so we could do both. 

Going to celebrate dh b day tonight. Its really the only date that worked for everyone so we will take it. 

Poor ds 3 did not get into the masters program again. last year he got an interview. This year nothing. It is just so competitive, so I dont know what he will do. He says he really doesnt care and then he says he might look at another college, we shall see.

Lost more people we knew lately, I hate cancer, dh former office mates wife, the 2 ds former teacher, they had her for different grades.


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## luvmarypoppins

Hope everyone is doing well.

After my dh recovered from the flu he got really sick again. Of course he refused to go to urgent care and kept saying his chest hurt. I finally got him to go. He really doesnt have a primary dr. and goes to dr. waste of time who couldnt diagnose my cancer only rarely like once in 5 years lol. Well urgent care took a chest xray and said he had pneumonia. He was on lots of meds and is now feeling better.  He is going to the west coast in two weeks and ds 3 is prob going with him.

I know I need to schedule my blood and sono soon. I need to dig out the papers and see when my appt. is with the endo. I really dont want to get the blood test on a week end because it seems when I do that they always mess it up and one of the tests is not processed. I even checked them last time in writing. 

Snowing now and seeing if we will get more next week, they say we are in store for lots so we shall see. 

Still working on the trip for May, dh has to see how things go at work. Our trips are usually last minute so we get what we can take, but I might just make multiple day adrs and then cancel them since I really dont know the exact dates yet. Prob. still going to do the split at the Swan and YC. 

Check in when you can.


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## macraven

Lmp, hope all gets better soon for you and family


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## SingingMom

luvmarypoppins said:


> Hope everyone is doing well.
> 
> After my dh recovered from the flu he got really sick again. Of course he refused to go to urgent care and kept saying his chest hurt. I finally got him to go. He really doesnt have a primary dr. and goes to dr. waste of time who couldnt diagnose my cancer only rarely like once in 5 years lol. Well urgent care took a chest xray and said he had pneumonia. He was on lots of meds and is now feeling better.  He is going to the west coast in two weeks and ds 3 is prob going with him.
> 
> I know I need to schedule my blood and sono soon. I need to dig out the papers and see when my appt. is with the endo. I really dont want to get the blood test on a week end because it seems when I do that they always mess it up and one of the tests is not processed. I even checked them last time in writing.
> 
> Snowing now and seeing if we will get more next week, they say we are in store for lots so we shall see.
> 
> Still working on the trip for May, dh has to see how things go at work. Our trips are usually last minute so we get what we can take, but I might just make multiple day adrs and then cancel them since I really dont know the exact dates yet. Prob. still going to do the split at the Swan and YC.
> 
> Check in when you can.


My dad had the flu and it went into double pneumonia.  I think he should have been admitted, but mom (RN) insisted she wanted to keep him home.  He's been sick over a month but now seems to be on the upswing.  Poor guy.  Had to have fluid drained he was so bad. Meds sent his other meds out of whack.  It's been quite a month!  Hope  your DH gets all the rest he needs.  Not something to fool around with.

Heading down to see DD at the end of the month.  This time DH is able to tag along, which will be nice. 

Gyno appt next week.  oh Joy...


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## luvmarypoppins

Well I dug my endo papers out and my appt. is March 31st. Now with dh going away I am scrambling to get the tests done. They are leaving wed. So ds3 offered to take me for the blood test on tues, his day off. The only appt. was 2 pm. So I booked it. Then ds said to me, is that a fasting blood test and I said, oh yeah I forgot, So now I probably cant eat till after that. Not too much of a problem. I will survive. lol.

Now the sono. The one hospital place I go to usually has a 2 week wait. But I heard they opened another place but i dont know if they do sonos and I do know they are open on Saturdays. Its a little further away so we shall see. We have a friend in the nursing home near there so maybe we an kill 2 birds with one stone and supposedly you dont kneed an appt. here but its still part of the hospital system. I guess you just sit and wait. Maybe I will give them a call and make sure they do neck sonos and maybe ask about the wait since they say we are getting more snow on sat, sigh. 

singing mom - hope you have a good trip seeing your dd

Hope everyone is doing well. Check in when you can.


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## Christine

Hello everyone!

LMP--I'd definitely check on the neck sonogram before going.  We have places that do sonograms on Saturdays and Sundays here but it is *never* the thyroid ones.  That takes a special certified sonographer (at least here), so I always have to get a weekday appointment.  I heard there was another storm on track, thankfully, not headed to the DC area and we will get some 50 degree temps this weekend.

I had my exercise stress test last week and all went well with that.  Well, I didn't properly eat or drink before the test so THAT was not good.  Had a problem recovering after ward and felt awful.  I stopped at McDonald's and that seemed to take care of it.  I think I got severely dehydrated as well as low blood sugar.  They really PUSH you on that treadmill.

Next week I'm having an echocardiogram just to finish up the cardiac studies.  I've had two before.  One showed a mild mitral valve prolapse and one didn't (this was years ago) so he just wants to get a status on that.  So not sure what's causing the palps and the low heart rate at times but he was not concerned.

I've changed my thyroid medication to Levoxyl dye free (so I take two 50 mcg tablets).  I keep getting these odd itchy bumps and small rashes at times.  I wanted to make sure it wasn't something in the Synthroid.  Synthroid has a small amount of Povidone in it and I am allergic to that, but changing meds doesn't seem to have made a difference so not sure what that's about.  I think my body is just going crazy after menopause!!

Well, everyone have a good weekend.


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## luvmarypoppins

Christine - glad the stress test was good except for the side effects. I have only had an echo once before I think. They said I couldnt physically do the stress test so I would need the nuclear one.   Hope your rash symptoms are bearable. It sounds strange and I am sure its a nuisance. Maybe a dermatologist or take a picture and show the dr. so they can see it. If it goes away and comes intermittently. 

Well the luck of the sono was with me today, lol.. I called and they said when do you want, um this is the place I have to wait 2 weeks for. They said is it a hosp. dr. who ordered your test and I said yes, So they pulled it up and said we have something tues. I said perfect! So now it will be blood, lunch with ds and then sono. Next day they are leaving for the west coast for a week.

Dh said this is the last trip he will be taking.He is sure he will most likely be losing his job thanks to our new proposed govt. budget cuts. Dont want to be political but sigh, sigh and more sigh. His place is taking a huge, huge hit. They of course will take oldest people first who are paid the most and dh boss hates him anyway. The only thing I am worried about is the healthcare. I need something really good. Our state does not do the insurance exchange, we have our own kind of thing and I dont know what is offered on it. Now I am even afraid to ask about a vacation. They also usually give an incentive to get you to retire early and dh did ask about that, they said no incentives will be offered to anyone - we have no money, gheesh! Snow tomm. oh joy!


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## SingingMom

Sorry to hear about your DH's job situation, LMP.  My brother-in-law is going through something similar.  The "waiting" is the worst.

Tuesday I have gyno.  Been having terrible back pain and uncomfortable front lower feeling.  My imagination is on overload for ovarian cancer.  Hopefully it won't be anything other than needing to lose weight.  (which, isn't happening. I hate the 50's!)

Off to see DD next Saturday.  Looking forward to sun and NO SNOW.


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## Christine

LMP, so sorry to hear about your husband.  This budget stuff is crazy isn't it.  I work for one of the agencies that will get the big boost (which is just ridiculous and I'm sure you can figure out which one it is!!).  

I hope your husband has some skills that could transfer to another agency maybe.  Where there will be a vacuum, some else will need more help.  But I'm not entirely confident that this drastic budget will make it through Congress.  It's just nuts and all very unsettling.  I keep thinking this is just some nightmare and it's not real.

Anyway, good news on the sono; it's great when you can get stuff taken care of.

SingingMom, best of luck at the gyno appointment.  Here's to hoping it's excess weight.  And don't blame your 50s!!! I was doing that but once I got serious I did drop 16 lbs.  I thought I couldn't but I proved myself wrong.  You just have to really get in the right frame of mind for it.  Don't mean to sound preachy but I thought I couldn't lose and I did (with very little exercise).  

Everyone have a nice weekend!


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## macraven

LMP so sorry to read about your husband

Scary not to have medical insurance
My husband quit his job when we moved
No insurance for him and it's a worry

 Very concerned how health care will be dealt with in the coming months

Singingmom, hope your health improves 
I hear you on the imagination 

Christine, we will call you miss skinny 

Losing weight is so uplifting


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## Christine

macraven said:


> Christine, we will call you miss skinny
> 
> Losing weight is so uplifting



Oh, well, that's probably pushing it!!!  Especially since I've been "stress" eating!  I've managed to eat quite a few boxes of Girl Scout cookies (all to myself) that has probably given me several pounds back.  If I could just stop the mindless eating!


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## luvmarypoppins

Well yest was a comedy of errors. Ds said I should just go with the flow and these things are not an issue, I said yes but there were many of them yest, so it bothered me. I am the kind of person who likes everything planned out and everything to go as planned as much as can be. 

Before I go I realized the lab script was expired yesterday so I called and they faxed over a new one right to the lab, so nice.
2. I get to the lab and some ladies say, oh the elevator is broken, the lab is on the second floor. Ds goes and scopes out the stairs. He said there are too many and I wouldnt be able to do them. He goes and gets the script. They say where another lab is. He asks them to come downstairs and draw the blood. They said they cant do that (I didnt ask about this, he did).
Meanwhile I havent eaten all day and vision of Panera Bread just passed us by
3. Get to new lab. Long walk and its hard for me to get in and out of ds car. The tech there says her computer is not working  but she wastes time trying to fix it instead of drawing my blood or using a different computer she says works. There were only 2 people waiting. She says - oh you ate right (fasting vs. not fasting). I said, I didnt eat and I am starving. This girl was not good. She tied the torniquet so tight, sigh
4. Get to sono, wait and wait. I am so exhausted I borrowed one of their wheelchairs to use like a walker. Finally tech comes, huh, not my usual girl to take me back. I go into exam room. There are 2 residents in there, a male and female. Um, huh, what. I know its a teaching hosp. but shouldnt they ask me before I even go into the room, no, surprise. I am thinking of writing a letter to the hosp. president. Ds says he hates residents and they are useless on his floor. The tech says something. I ask where is G. (my usual tech). She says, oh she just left, note to self - never have a late in day appt. Your favorite tech will have flown the coop. The residents said nothing, so much for compassion. Ds said he had to take a course on compassion. Told tech just get this over with. I was a little grumpy by this time. She pressed hard, not like my reg. tech, sigh. Didnt even ask me to wait if they wanted more pictures, oh well.
5. Ds goes to the parking gate, they make you put a token in that they give you at check out. Token does not work, guy in back of him has to back up, Ds has to go and get a new token. I am waiting near a bench for him to pick me up. Oh did I mention its 5 pm and I havent eaten all day, sigh. lol, the end. And now we wait. 
Thank heavens I only have to do this twice a year.


----------



## macraven

Now that was a long day!!!!!

Hope you got to eat once you and ds left


----------



## SingingMom

Lordy, LMP, that was an ordeal and a half!!   Hopefully all the results are good.  Keep us posted.

My gyno apt was fine - he thinks my back pain is back related, but is sending me for transvaginal & abdominal ultrasounds to rule out gyno problems.  After those results he said to follow up with primary to get an MRI for the lower back.   We are going to visit DD on Saturday.  I'll go for tests after that.  We leave for Spain in May.  Hopefully I can go with a clear mind!


----------



## Christine

Good luck to everyone awaiting test results.  I just had an echocardiogram done about an hour ago.  Won't get results until next week I'm sure.  I'm not overly worried about it (but that's probably when something bad will happen!!).

Anyway, glad I'm done testing for a bit.  My GYN and mammogram appointments start up in late April, early May.  It just never ends.


----------



## luvmarypoppins

singing mom - glad your tests went well and hope you have a great time visiting your dd and great weather too I am sure! 

Christine - hope your echo results were good

Well today was the endo appt. and things did not go as planned, sigh, should I expect otherwise lately, lol. Found the new office, they also said they are at the old office??? Its just two roads away. She also has a third office that is too far away. They are branching out for sure. The new office does not have a computer in the room so you have to go into another room for a conference. Also there is no place for the dr. to sit, crazy. She hopped up on the exam table while dh and I were in the chairs., um ok. 

The endo news was not good. My bp was good, I gained weight, yes winter,, dont go out much. She said the one thyroid number was not good so she is decreasing my synthroid. I said what -  I feel so tired and terrible already. Its just one less pill on sunday and then more blood work in two months to see how that is working out.

Worst news was that the one bad lymph node was still there. It is not popped out, just on the sonogram.  She said it should have gone away after a year. This is troubling and concerning to her. She said I need a biopsy and she mentioned in this order - cancer, lymphoma or a reactive lymph node. So now on Monday I am getting a biopsy, not by her but by a new dr. they have., a female. She looks ok online. I told her anyway I dont want to go back to Dr. who almost killed me. I did ask what if it was cancer again, I mentioned alcohol ablation, she stared at me, I am not liking the way she is looking at me. She said I will send you to another surgeon, hmm,, I guess dr. who almost killed me is off the list now??? So we will biopsy and we wait.

She says she does not understand why the cancer number is good if the lymph node is bad and if it was lymphoma I should have night sweats. I told her dr. almost killed me actually did think I had lymphoma the lst time too. 

I need some diversions this week end. A movie or some retail shopping therapy should do it. Dh hugged me twice but says I read too much into things, yeah right, its not him.


----------



## Christine

LMP--let's just hope for a reactive lymph node.  That's probably the issue and I think they can last a long time. I know it's easy to think the worst.  

My echo came out "normal."  So, despite all the weird things going on with my heart, it is OK.  

Hope everyone is doing well.


----------



## macraven

LMP


Christina 
Hooray you are normal!


----------



## SingingMom

Geesh.  When do you see the surgeon, LMP?  Will keep you in my prayers.

Transvaginal and abdominal ultrasounds scheduled for this Thursday, along with annual mammo.  Can't wait for Friday.  @@


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## luvmarypoppins

singing mom - best of luck with the testing

Christine - glad you got good echo results

Well I survived the biopsy. When I signed the papers it said - rule out thyroid cancer, gheesh. Nothing like seeing it again in your face. The new endo was nice. She does all the biopsies/fna's and also sees patients too. She explained everything to me and said she wanted to do 4 samples. I had to lay down, didnt like that. The surgeon when he did it just had me sit in a chair very still of course. She used the ultrasound to guide the needle. A nurse came in later to help. 

Dh observed from the chair. He said generally all he saw was the drs. butt lol! he did see her take the samples out of the needles. She then asks me can she do a 5th sample because the needle kept getting clogged. I said o.k. yeah like what am I going to say. She said she wanted to give it her best shot. She said I was a real trooper. I only flinched once when it really hurt during her probing around in there. . I asked her if she would shake my neck, (the surgeon had done that). She said it wouldnt make a difference, um o.k. She said she had a hard time getting samples.

So she said she is sending it to an outside lab and I should have the results on Friday and the regular endo will call me. She said this lab only does head and neck and thyroid stuff and she has more faith in them then the univ. hosp. lab. um o.k. 

She said based on the samples she got it could be a lipoma but really you have to wait for the results and they will look for any tg in the samples because that is def. the thy cancer indicator. 

She said if the testing is inconclusive because of the sample quality I could be sent to a cyto lab? or the endo may just decide to keep watching it. We shall see.

I came home, took two tylenol rested alot until now and threw in a load of laundry. I am not cooking dinner. Dh is sweet. If I turn a certain way it is really sore (my neck).

I am praying and we will see what is in store.


----------



## SingingMom

Prayers for a good report, LMP.  

I really feel for you.  I thought the biopsy was far worse than the actual thyroidectomy!  I think it was because I was "awake" and I have this thing about "personal space".  Nothing worse for me than a doctor smack in my face!


----------



## macraven

Prayers for you


----------



## Christine

LMP, hope it all turns out well and glad to hear that she is sending it off to a specialty lab.


----------



## SingingMom

Mammo good.  Trans vaginal ultrasound shows fibroids that, in the radiologist words, "No one would do anything about"  Hmm.  Guess I'll see what my gyno says after reading radiologist's report.  He seemed to think that's not where my back pain is coming from, but I wonder.  If I'm postmenopausal by a year, why would the fibroids even be there?  Such fun.


----------



## luvmarypoppins

singing mom - glad to hear your tests are over and the results sound encouraging and on a good path but wondering what your dr. will say about the pain. I have constant back pain. After 3 back surgeries and now all the osteoporosis I just try not to think about it.

Well I never heard from the endo today, sigh. Its going to be a long week end. I am hoping it is not like the post surgical biopsies where they said everyone wanted to look at it since it was so rare etc. I am praying and hope no news will be good news but we shall see. 

Started by making the adrs for the trip. So far we are eating dinner at Kona (dh), Cape May (dh crab coma) Chefs (finally got to pick something I wanted), Brown Derby (Dh asked for this) Tusker House (only picked this to see if we can get a rivers of life fastpass, if not I might dump it and Be Our Guest (we will be eating right during the fireworks so I plan to see them earlier in the week). and of course dh has to eat breakfast at the Garden Grove at the Swan.

I am still checking out the hotel prices, gosh disney is so expensive even with an ap discount. I cant even get three days in a row, so far I am looking at one day at the beach club, 2 at the yacht club and then 3 days at the Swan, dh will have a fit changing rooms three times but we have done it before and I told him that is the breaks if you cant make a time commitment which he has to see about all his projects etc.


----------



## luvmarypoppins

Well I called the dr. today since I havent heard anything.

She finally called me back and said the dreaded c word again unfortunately.

Dh and I are going to see her tomm. to discuss what she has in mind. 

I figure it will only be 3 options
a. r side radical neck since I have the aggressive variant. I already brought up I dont want the one surgeon and I dont know about the other one who saved my life so we shall see. 
b. rai only - I doubt that
3. external beam radiation, gosh I hope not
and lets throw in the lovely lid diet again. Well I always say I  would not mind doing it in the warm weather because the fruits and veg are so much better choices. lol. 

Of course I would rather have the surgery closer to home because I always have issues and ds works  there so its like a no brainer but the surgeon quality is questionable. 

Somehow I dont think we will be taking that trip to Disney and I dont think I will be able to teach this summer, such is life. 

Say a prayer.


----------



## macraven

Prayers said


----------



## prprincess

luvmarypoppins said:


> Well I called the dr. today since I havent heard anything.
> 
> She finally called me back and said the dreaded c word again unfortunately.
> 
> Dh and I are going to see her tomm. to discuss what she has in mind.
> 
> I figure it will only be 3 options
> a. r side radical neck since I have the aggressive variant. I already brought up I dont want the one surgeon and I dont know about the other one who saved my life so we shall see.
> b. rai only - I doubt that
> 3. external beam radiation, gosh I hope not
> and lets throw in the lovely lid diet again. Well I always say I  would not mind doing it in the warm weather because the fruits and veg are so much better choices. lol.
> 
> Of course I would rather have the surgery closer to home because I always have issues and ds works  there so its like a no brainer but the surgeon quality is questionable.
> 
> Somehow I dont think we will be taking that trip to Disney and I dont think I will be able to teach this summer, such is life.
> 
> Say a prayer.


I'm so sorry to hear that. You're in my thoughts and saying prayers for you, of course! And please keep us posted on what the endo says. I hope that you can get the surgeon that you wanted, and the RAI and the diet are a huge pain. But you're right the fruits and veggies will be great, and don't forget the amazing salsa recipe from the online cookbook! You can also grill your itty bitty daily meat portions on the BBQ now, and or course, we usually lose a few pounds on the diet, too. Stay positive, and thinking good thoughts. And of course we are here for you!!


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## SingingMom

Prayers storming heaven for you, LMP.  Please keep us posted.


----------



## Christine

LMP, sorry to hear your news.  I'm hoping you can get the right treatment worked out pretty quickly.  What are you "hoping" they will do?  Do you want to do surgery?  If you don't have a good surgeon in your area, have you thought about traveling to a specialist?  I know that's a pain....

I'll be thinking of you and please keep us posted.


----------



## luvmarypoppins

Well the endo visit was enlightening

She said -
The lymph node is the place where the cancer is and the tg in it is like 256!! There is also another smaller lymph node. As usual my cancer is weird since the blood tests are normal but the biopsy is terrible. She feels it has been there for a year and thought at first it was a reactive one since I had the infection in my  tooth, ear etc. It got smaller but got bigger after six months was up. So its not fast growing and more encapsulated maybe. 

Monday is a PET scan. So good bye easter dinner. Hello maybe some eggs, bacon, salad and milk, weird but I dont want to eat just meat since I will be doing that on the LID shortly and 2 of the ds will prob not be here so maybe I will make them some italian food. I cant have carbs, sugar etc for my last meal sun night and have to drink 32 ounces of water monday morning. Of course water is not my favorite. She says she is concerned about it going to the bone and lung but she does have 2 80 yo patients with lung stuff that had it for the last 10 years. Of course I ask questions like these. 

Then wed. I will be seeing the radiation oncologist. My old rad. onc. has moved to Israel. This is a new guy who took her place and she says I should like him. I said well I dont want someone who is an in your face type of person , I want more of the shoulder to cry on type. She says he is nice. I will look him up online.

Then of course LID for 2 weeks and thyrogen shots and then body scan. Depending if the scan is good there will still be a neck dissection just seeing if I am now non avid or not. If I have turned to being non avid then they will just do a neck dissection with no RAI. If the scan is good they will do RAI, oh fun!!

She agrees with me that surgeon who almost killed me is out of the question. She also feels surgeon who saved my life lacks the expertise to do this. She said she wouldnt even take her mother to this hosp. lol!!!! She mentioned 4 hospitals, all but one are in the city. Dh does not want to go to the city. The other hosp. I think she did her residency at and its also an hour away in the town that ds2 gf lives in. The endo also might be able to get me in there faster since she is familiar with the system there so to speak. She did not say that, I am just surmising that.

She said it will be a difficult surgery and I need someone who is very skilled. It will be the whole R neck dissection. Dh said - now you will have matching sides, ok dh. 

I also mentioned m R leg hurt so she got me in the hosp. to do a doppler of where I had the blood clot last year. Ds3 was able to come down and he even went to lunch with us. The endo also said she will be very happy to speak to ds3 about any test result. He said mom, she really likes you because the drs. here never say that to anyone. 

So goodbye chocolate easter bunny, jelly beans etc. Also I hope I am not figuring out the time line wrong but I hope I will not be on the LID for mothers day because that will stink big time, sigh. Bad enough easter is going out the window lol. But at least I will be in church and that is more important so I will focus on that. 

And there is your thy update of the day peeps. 

I will be lamenting my lid woes here for sure.


----------



## prprincess

luvmarypoppins said:


> Well the endo visit was enlightening
> 
> She said it will be a difficult surgery and I need someone who is very skilled. It will be the whole R neck dissection. Dh said - now you will have matching sides, ok dh.


I'm sorry, I don't know where you live. But if you aren't far from Pennsylvania, the doctors here at UPenn are amazing when it comes to thyroid surgeries and cancer. I can't complain about my own surgery, but had I known that they were so much better prior to my surgery, I would have crossed state lines to do it.

You can do dark chocolate, homemade cinnamon and sugar coated plain air-popped popcorn, and some of Dr. Oetker's cookie and brownie mixes on the LID...not sure if you knew that.

Good luck and my thoughts and prayers are with you!


----------



## Christine

LMP, sounds like you've got some good information.  I'm really glad to hear that it *sounds* to be confined to the lymph node.  I think it's generally good news that your Tg has not started to elevate.  I'm sure you're anxious to have the PET scan done.  When I used to participate on the thyroid listserv, there were several ladies there with lung mets and it was okay.  Of course, as to that, I think we're getting way ahead of ourselves but I know it's hard for the mind not to go there.

I'm not sure where you live and I know it's tough to go areas that you don't want to but I hope you go "to the city."  Get the best surgeon.  That is my one regret.  Back in the 90s, when I had mine, there was no internet and I had no way to figure it out.  I had a local surgeon (who was a lovely man) do mine and I think he did a good job, but he wasn't the most elegant surgeon and I have unusual scarring and scar tissue.  Had I known that just up the road in Washington, DC there was THE BEST thyroid surgeons I would have been there in a heart beat, even though it certainly would have been a terrible inconvenience to my family.

Anyway it sounds like you are pretty upbeat because you have a path forward and that is sometimes really what you need to get through.


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## macraven

LMP thank you for updating us

The other posters and you know more about the procedure than I do

I hope you can find your answers on where to have the surgery and pick the surgeon you connect with best!

Hugs


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## luvmarypoppins

Well the PET scan is done. It was at the same place I go for the neck sonos. DH thought it was another bldg. It was not the greatest as I was so uncomfortable on the table. Mostly back pain that was made worse by laying on hard plastic in a certain place. I kept having to pee all the time. They said its normal. They said I did good. I tried to stay as still as possible. Felt a little dizzy getting up. 

Dh was giving me a lecture on nuclear med and half lifes of doses, gheesh.

Yest in church I had a godwink. That is what the breast cancer thread girls call them. Right behind me was a teacher who used to be at the now closed school. I knew she went to Sloan Kettering and I asked her about her experience. She had endometrial or cervical cancer. She doesnt even go to our church, just showed up and just happened to sit behind me, godwink. I whispered to her and told her not to say anything that I might go there. She told me they promised her that she would have her own room and nurse. She said the room was so hot she couldnt breathe. She never saw a nurse the whole night long and she was suppose to stay there 2 days and they kicked her out after 1 day and that resulted in her going to the local ER here with an emergency. OK, all that news does not sit well with me at all. She said she did like the surgeon and the surgery was ok. 

Also looked up and yes my endo did have her residency at the hosp. that is closest and also the head dr. there that she mentioned if I have the right one did a little fellowship at MD Anderson and of course that is the top thy ca center in the us. 

So now I dont know if I am getting the PET results from the endo or will I get them from the rad. onc. I might call the endo tomm. I would rather hear bad news on the phone from her instead of hearing it from some dr. I am just meeting for the first time on wed.

Say a prayer!


----------



## macraven

Prayers said for you


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## luvmarypoppins

Well I have spoken to the endo and met the new radiation oncologist. As always it was enlightening. I think I will call it the good bad news

The best news is that the PET scan showed the cancer is confined in the one lymph node but the scan also showed some issues with my heart and gastro stuff. Hmm, ok another day and another dr but cancer is on the top right now

Loved or greatly liked the new rad onc. He did some medical school at Sloan Kettering. He said my case is very different and dh liked his new saying that his professor taught him - no tumor follows the textbook!! lol

He said some interesting things
Yes he agrees my cancer is so rare and they only get one or two pts. a year with it.
Its even more troublesome that my tsh did not rise in the blood work, so in the future determining the cancer by a blood test will not be a reliable source of checking the cancer marker numbers, sigh. He said only one of his professors at Sloan Kettering ever had a case like this that he mentioned and he learned of in his career so far, gheesh.
He didnt say this so much but the oncology nurse said - since I have had a really high dose of rai and it didnt do its job, the rai then its more probable that I will test out as non avid with the scan.

If I am non avid there was some mention of possible external beam radiation or just watching it, sigh

He said if I am avid then the rai dose will have to be high at least 150 and more than likely closer to 200. 6oo is the lifetime maximum dose and he agreed with me about my concerns of a secondary leukemia cancer, sigh.

He will confer with the endo on things.
The nurse and surgeon both mentioned Dr. S. the surgeon who almost killed me. I said, sorry there is no way I am going back to that guy who almost killed me. Nurse mentioned another dr. I called him Doogie Howser,. 
They did exactly what the endo said they would - play politics and try to get me to have the surgery there. I said I will just take it one day at a time and do this testing first, The onc. nurse then mentioned another dr. and she said, oh but he is near the city. I didnt mention him, she did and I played dumb because its the exact dr. I am thinking of, the one who had a fellowship at MD Anderson, so that seems to me that they do regard him as capable for patients,,

My head is spinning. I will do another post of the lid, that is more head spinning.

I start the lid on monday.   Keep praying.


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## macraven

LMP you are always in my prayers

I'm sorry this is all happening to you


God will never fail you

Hugs


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## The Mystery Machine

LMP, I hopped over here and I am sorry to read your diagnosis. I hope you get what you need from the docs. I understand the frustration. Sometimes it is maddening.

Gentle HUGS!


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## luvmarypoppins

Well here is my LID post

I actually started it yest and all I can say is I am glad I had the food in the house I was looking over my papers and noticed all the dates were wrong.
Well Nurse Mess Up  (wanted to say something else but I dont think its allowed) calls and says oh I must have been looking at a wrong calendar or something, so start the diet asap, tomm, at the latest, So yest. I started the diet, so now I have one less day of it, 13 instead of 14.

They seemed to have changed things and I asked her the rationale behind this. She said they follow the thyroid imagining national something guidelines. She said dont read anything on line.

I am still going to do the stricter stuff I used to do. Also some of their info seems to contradict itself, since she gave me a packet of stuff. One paper says dried fruit is ok llike raisins and then another says no dried fruit sigh,

The big thing was of course I can only have distilled water since we have an aquifier as our source here. They now no longer limit the meat to 3-4 ounces at least for this survey.  She said eat as much as you want, wth??? I am only doing about approx 4. I have to psych myself out when I look at the salad and I say "Be The Bunny!!!" loll!

I will go shopping tomm for more stuff. 

Great news is that dh found out that he is being able to keep his job for at least this new fiscal year which starts Oct. lst. That is a blessing because we really need the health ins. now for sure. They had a big meeting of course when dh was with me in the hosp. He sent someone to represent his interests and that guy told him only 4 things were approved and everyone else is not getting funded so its a gift from God for sure that we so need. 

Well ds3 just saw Aladdin on Broadway and said it was good,


----------



## Christine

LMP, don't worry too much on the length of time for the diet.  One year when I went to a thyroid cancer conference and heard Dr. Ain speak (he is a specialist on aggressive/rare thyroid cancers), he talked about the LID and said that they always tell patients to do it for 2 weeks, but it really only takes one week to decrease the iodine in your body.  He said that so many patients mess up the diet in the first week and they are "good" at it by the second week, which is what counts.  He said if you get really good with the diet, you would only have to do it for one week.  But the published guidelines all will say 2 weeks.

There seems to be some conflicting info on the dried fruit because some are preserved with sulfur dioxide and it has been confused with the sulfur used in molasses.  I think they may have that wrong, but I think if you could find some dried fruit that didn't use that (maybe Trader Joe's) you'd be fine with as much as you want.  But you know what to do!!!

That's great news on your husband's job and, hopefully, as time goes on, some of this "governmental" confusion will settle down.  It's been a mess for everyone.


----------



## luvmarypoppins

Well I am soldiering on with the diet. Almost wanted to give it to ds3 today when he was cooking bacon and eggs, sigh. 
Also found out what a package direction means when it says watch carefully. A nice explosion of oatmeal greeted me in the microwave and I found out again, I really dont like oatmeal, I am glad that there was less than a quarter of it left in the bowl. I had to drown it with cinnamon, pure maple sugar pecans and bananas.

Dh nice 3000k tooth is a mess again as the cap fell off. He is going back to the dentist tomm. I just dont know how much more to keep pouring into this thing. I dont think it should fall off.

We are going to get a lawn service. Ds1 is lazy, ds2 is always with the gf and ds3 works every other week end, so we will just divide it and charge it on their rent. The guy is giving us an estimate later today. He cuts the grass next door, well his son was and dh just went up to him and asked him while he made a quick lunch break home. 

I lost it emotionally in church yest. Our pastors wife texted me today and I explained everything to her. She is sweet but younger than us for sure. I alternate between holding it together and falling apart and of course praying alot. 

Waiting for the endos office to call me back with a followup appt so we can discuss surgeons.


----------



## macraven

Still have you in my prayers


Hope you can use the surgeon if your first choice


----------



## luvmarypoppins

Peanut butter on matzoh, walnuts, a clementine, blackberries and apple slices with cinnamon, yup that was lunch today.

I was doing a little on line research so I can be informed when I talk to the rad. onc. again. Honestly I did not like what I read at all, Particularly if I turn out to be non avid. I did read they are working on two drugs and since he was at MSK it will be nice to hear what he thinks.

The endos office never called back. You have to go to the hosp. central scheduling number anyway. I called again, said I left a message friday, no one called me back so she said ok, you can come in August, I said no, She said what are you being treated for. I said cancer and this is urgent because we have to discuss surgeons. So I am now going to see her May 9th. Yup, advocating for myself. 

Also this diet is really messing up my body. I am getting so many leg, rib cramps etc. So I have to eat alot of bananas and that helps it alot.


----------



## luvmarypoppins

Well whats new - hmm yest. I had a call via dh that the rad onc. called and said I had to call our ins. comp. I call them up and they say - oh you have to authorize us to send the thyrogen to the dr etc. I then had to answer a million gazillion questions since this is a specialty pharmacy the ins. company uses. She said ok I will have it there tues. I said, um no what. I think the test is scheduled earlier in the week. I was just saying that as I wanted it there asap. So she said I will mail it out tomm. I said ok. Then she says well we take credits cards and you owe $50, lol. I am just loving our new ins, not!!!

Then today I called the rad. onc,. just to make sure everything was ok and she said they told her that it would arrive there today, ok.

Next later on today dh proceeds to tell me the rad. onc. nurse called him, I dont know why they are not calling him. I will check this out when I get there. He says I have bad news from the nurse you dont like, lol. I freak out and ask what it is. He said they are changing all your test dates. I start to cry. Thinking I will have to be on this terrible diet even more. Dh is not the best communicator,. I like to cut right to the chase with just facts. He says they are switching your dates to a day earlier, so now I have thyrogen on Mond. thyrogen on tues. and scan on wed. because they said the nuclear med. room will not be available I did see them doing construction when we were there. So one less day on the diet for me, yippee. I feel like I am hitting the wall with the food.


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## SingingMom

LMP - Just catching up from being away visiting DD....  I'm praying that God leads you to the perfect doctors and hospital to care for you!


----------



## prprincess

luvmarypoppins said:


> So one less day on the diet for me, yippee. I feel like I am hitting the wall with the food.


Hang in there! You are almost done!


----------



## luvmarypoppins

Well today was a poop show as ds 3 would say. What was to be about 30 min turned into 1 hour and 45 min.Dh advocated for me twice. Nurse Ratchett ignored me and finally the sweet male nurse who's English was hard for me to understand and apologized for the delay. I think the onc didn't sign the med release order.He said this won't happen Tomm. I feel queasy and light is bothering me


----------



## luvmarypoppins

singing mom - glad you had a great time seeing your dd. What Disney places did you eat at? I love to hear other peoples opinions on places.

Well peeps, channel your inner Annie and sing a long with me, tomorrow, tomorrow I love you tomm. you're only a day away. The light at the end of the tunnel. Praise God.

Last night was rough. Nausea, and craziness. My body is rebelling against this for sure.

I dont know what my first real  meal will be as my stomach is queasy every time I eat lately.

Say prayers.


----------



## Christine

LMP, it's almost over and I can't wait to hear your "relief" post tomorrow.  Good luck with everything and I will be thinking of you all day tomorrow.  I know how stressful it is.


----------



## SingingMom

luvmarypoppins said:


> singing mom - glad you had a great time seeing your dd. What Disney places did you eat at? I love to hear other peoples opinions on places.
> 
> .
> 
> Say prayers.


DD and I ate a few local spots this time - Bonefish Grill in Winter Garden, Caprino's in Windermere, and then our favorites:
Brown Derby Outdoor Lounge in HS, The Wave at Contemporary, Kona Café at Poly, Grand Floridian Café, Blaze in Disney Springs, California Grill Lounge at Contemporary, and our ultimate favorite Tutto Gusto Wine Cellar in Epcot. We tend to enjoy cocktails and appetizers.  It was a very pleasant visit - we shopped, visited with some friends, I took care of "mom" things for DD.  We will see her in a few weeks when she meets us here to start our Spain Adventure!  Then she returns to Fantasyland Attractions - she's looking forward to returning to Magic Kingdom to work!

I will be praying for your health.  Be strong!  God is good.


----------



## luvmarypoppins

I just saw this printed out mostly in caps sorry just too tired to fix it all.
Well the thy carcinoma study is done. It was hell. Nothing like the pet scan and best was that the guy who did my pet scan was doing some of this scan too. He is such a nice guy. Never got his name. He said - you look familiar - did I do a pet scan on you. I said yes I think you did, then he pulled down his mask and I knew it was him. Knew his voice too.

Well the day started off in rad. onc. because I was asking about this blood test on the instructions. They never gave me a script for it. The rad. onc. is sitting there staring at his computer and ignoring me, gheesh. Then I verify with the onc. nurse, who has now earned the name Nurse Ratchett from me and said I am having an appt. with the onc. on May 9th in the afternoon, I said for what. She said to discuss the results. I said - do you mean to tell me you are going to make me wait until then to get the results. I said THAT IS TORTUROUS. She SAYS THE TESTS WILL BE OVER TODAY AFTER THE DR. GOES HOME. i sAID LOUD WELL CANT HE CALL ME AT HOME AND JUST SAY GOOD OR BAD ETC. so THEY AGREE HE WILL CALL ME. 

THE TEST WAS TORTUROUS MOSTLY DUE TO ALL MY BACK SURGERY,. tHEY DID PAUSE AND TRY TO REPOSTION ME. my r HIP HAD PAIN SEARING THROUGH IT THEN LATER MY l LOWER BACK HAD THE PAIN SEARING THROUGH IT FROM LAYING ON THE HARD PLASTIC TABLE. aND PAIN WAS SEARING ACROSS THE BAck OF MY SKULL BETWEEN MY EARS SO THEY PUT A TINY PILLOWCASE IN BACK, GHEESH. i STARTED HAVING PAIN SPASMS AND WAS MOANING BUT i GOT THrOUGH IT. aFTER IT WAS OVER i WAS SHAKING IN PAIN AND HAD A GIANT STOMACH ACHE. mORE ON THAT LATER.

wELL NO SOONER THAN THEY WHEEL ME IN THE WHEELCHAiR TO THE WAITING ROOM THEN i SEE DH ON THE PHONE WITH THE ONC. mAYBE BECAUSE i SAID LOUDLY WHAT A BUNCH OF messups  WHEN i LEFT RADIATION ONC. EARLIER IN THE DAY??? i DIDNT CARE AT THIS POINT,. i HAD IT, OH DID i SAY i HAD TO WAIT 1 1.2 HOURS FOR MY FIRST THYROGEN SHOT BECAUSE THE RAD. ONC,. DIDNT SIGN ThE RIGHT ORDERS. 

wELL AS EXPECTED HE SAID i AM NON AVID. tHE TUMOR TOOK UP NONE OF THE IODINE, SO HE SAID JUST GO GET A SURGEON AND i AM CANCELLING YOUR NEXT APPT. BECAUSE THERE IS NOTHING i CAN DO TO HELP YOU,. i SAID WELL WHAT ABOUT EXTERNAL BEAm,. hE SAID i DONT WANT TO USE THAT NOW. so THERE yOU, GO, sEEmS LIKE HE JUST CHANGED MY HOPEFuL TO HOPELESS.

So now tues. we are speaking to the endo about surgeons. Oh and the stomach ache. Yup that caused me to have 3 rounds of explosive diarrhea. I told dh I thought it was from the radiation, He said no. It woudlnt do that. Oh well 

So there is my cancer world and welcome to it. Thanks for the whine and such is life. All I know is I am so glad I have my faith right now. 

Oh and if that was not enough, last night dh work took a bad problem and now he is afraid they will get rid of him again, oh gosh.


----------



## SingingMom

luvmarypoppins said:


> So now tues. we are speaking to the endo about surgeons. Oh and the stomach ache. Yup that caused me to have 3 rounds of explosive diarrhea. I told dh I thought it was from the radiation, He said no. It woudlnt do that. Oh well
> 
> So there is my cancer world and welcome to it. Thanks for the whine and such is life. All I know is I am so glad I have my faith right now.
> 
> Oh and if that was not enough, last night dh work took a bad problem and now he is afraid they will get rid of him again, oh gosh.



I am so sorry things were so unpleasant for you.  And I disagree with your husband - I think the radiation CAN be the reason for the explosive diarrhea.  Keep that faith - it is what gets us through.  HE knows what we are going through.  Put it in HIS hands -  I pray for our dear Lord to give you strength and courage to get through this.


----------



## 3DisneyBuggs

LMP sorry you are going through all this. I don't know where you live but if you are near NYC try a hospital there. MSKCC saved my Dad and my SIL just had successful surgery there. Not thyroid but pancreatic and ovarian. Don't  feel hopeless there are other doctors out there, I pray you find an excellent surgeon.


----------



## Christine

LMP, I'm so sorry you had such an AWFUL day.  That sound horrible.  I am sorry also that you were non-avid but, to be honest, if they can visualize the offending lymph node, surgery is the best option for getting rid of it.  Do they do alcohol ablations anymore?  My coworker had that done often because she is non-avid.  Again, I'm sorry this wasn't better news for you but I don't think it's too out of the ordinary for distant nodes to become non-avid.  There are protocols in place for that so hopefully your endocrinologist knows which direction to take next.


----------



## macraven

Lmp
Wow that was an awful experience on that stinky day!!!!

Hope no more of those for you 

Keeping you on my prayer list
And all the others here are also

No one has to ask as I just pray for all of you

I am not doing well
Had total knee replacement last Thursday 
Sunday in my own bed 

But hurt so bad 

Started the next day with pt 
That was Monday repeat Tuesday 
On Wednesday pt gal hit two spots on me that made me scream and cry
Session stopped

Long story short
Ended up directly back where I left and saw doc and then had ultrasound testing
Dvt
On meds and Coumadin testing Monday as med level was increased
Was at 3 which is higher than they want so
Retesting Monday for levels and ultrasound again
If it does not show clot dissolved 
Will be admitted to hospital again

So restricted to my bed and only walk to bathroom 

Staying at home was allowed as long as I stay in bed
Prayers please


----------



## Christine

macraven, wow, sorry to hear about the DVT with the surgery.  Everyone's having a rough time of it right now...I'm here hoping that everyone feels good soon.


----------



## SingingMom

macraven - so sorry to hear about your problems, too.  It's so frustrating to be unwell.  Prayers for all of you going through difficult times right now.


----------



## macraven

Thank you and I mean that

Prayers help me


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## luvmarypoppins

macraven - I am so sorry to hear you are dealing with the dvt on top of the knee replacement. Its like being double hit on the head for sure. 

I am sorry you are in so much pain. Do you have to wear a compression stocking. They made me wear one up to the knee. 

I am sure its frustrating also to try and get the coumadin levels titered out., I was blessed that my ins. paid for the xarelto, but that is not without its own side effects like peeing out blood etc. 

Praying your pain will ease, your numbers get titered out to a good level and you dont have to go back in the hospital. I am sure you are weary and worn from all of this. Praying for strength and healing for you.


----------



## macraven

Thank you lmp!

The compression hose go up to my undies 
I wear them 23 hours a day and then back on 
Will be like this for 6 weeks

If my levels are off I go back to the hospital as impatient on Monday 

50/50 about that 

On Tuesday I have another ultrasound 
If clots have not dissolved them I am hospitalized and have surgery for their removal

In 15 surgeries.  I have never gotten a blood clot until the total knee replacement one

Was put on total bed rest with leg elevated 23 hours day due to blood clot diagnosed Thursday 

Because Coumadin level adjusted Thur, have to me on correct level for 3 days before cardiovascular doc says it is an accurate reading

Did not want to be in hospital all these days just to wait for level testing 
Waste of money and aggravation for me when I can stay at home and in bed


----------



## macraven

Christine and singing mom thank you both also

I'm having the blahs now and did not realize I didn't thank you both properly
Knowing people I have never met are praying for me is lifting to me

I buried both my parents at bushnell last fall and now only have one relative left
Since I do not family to lean on, I joined this family


----------



## SingingMom

macraven said:


> Christine and singing mom thank you both also
> 
> I'm having the blahs now and did not realize I didn't thank you both properly
> Knowing people I have never met are praying for me is lifting to me
> 
> I buried both my parents at bushnell last fall and now only have one relative left
> Since I do not family to lean on, I joined this family


----------



## luvmarypoppins

macreven - keeping you in prayer today and hoping that your numbers are good and that you did not have to have the surgery. Were they going to put a screen in you?
Whatever your treatment plan is I pray that it is not too uncomfortable for you and that your pain lessens also. Keep the faith! Hang in there!


----------



## luvmarypoppins

Well back from the always ever enlightening endo visit. Do you ever think you have a plan all mapped out and then God says heah, wait I got something else for you. Hmm, am I even allowed to type that. Well if I get banned you know why lol. Do they make cancer exceptions lol!!

Any ways - I had in my mind the surgeon who I looked up and everyone said he was so good etc. Well that went out the window, more to come on that.

Told the endo my horrible rad. onc. experience with the dept. I said I pray no one gets treated the way I was there. Just giving you a heads up. She said well actually we dont send that many people there because really most dont need radiation, great.

he said one good thing that the rad,. onc. didnt say to me. She said that the pet scan showed not a lot of activity, ie I didnt light up alot and that is a very good sign that shows the tumor is not really actively raging full force like it was before like first surgery. I questioned what the new tracking will be for me. She said most likely pet/ct scan. She wants to do at least a ct scan 6 months post op. I will talk to the surgeon and also ask his views on this eventually. 

She said each of the endos there have a least two problem/interesting cases. She didnt use those exact words but that is what she meant. She said her other patient is the opposite of me, just her cancerous tumor is the flip of mine. lol. She shows bad tg blood test and they cant find it on the pet scan. gheesh. I am of course good blood and lighting on the pet scan. So there you go.

Next we talked surgeons. She said the guy I want is out because yes he is nice and all but he is not skilled enough for this. She said she worked there. I think her residency maybe. She said there is another dr. there and I would absolutely hate his personality and she woudlnt do that to me.

So here is the godwink as the Breast Cancer sistas say. I say - do you know surgeon Dr. P. He operated on dh friend here. She said, oh do I know Dr. P. Well he just happened to work here at the univ. and we lost him to the city. Hmm, I think he left right before my surgery. She said he is the best fantastic personality, she would take all her family to him she trusts him that much and she went to med school there and knows him. When I looked him up it said that lol he went to medical school in Nj, dont know if it as in Newark or where we used to live, so its like old town day maybe, lol,. And also he did a fellowship at Sloan Kettering, so he is up on the top. He takes our ins. and so I am calling him tomm. I cant get any more overwhelmed with all of this today.

Then I said I read they want all reports, test discs etc. She printed out the reports. and this is where it gets scary. She found surgeon who saved my life operative report but she could not find or access somehow if it was even there Dr. Who almost killed me's surgical reports on me. I said and guess what you are probably never going to find it. Its in the sea of forgetfullness scrubbed nice and clean aka goodbye law suit. She said this is very disturbing and strange. I aid no it is not. Its expected. Hmm why do I feel like this is the makings of a mystery movie or book lol. 

So tomm. starts another step in the journey, This dr. is at NYU Langone. Its also right around the corner from dh bff moms condo and the best possible location for dh to safely drive to.


----------



## luvmarypoppins

sorry this is turning into a novel. Forgot to say the endo said - remember the first time and no one was giving you any hope at all (true the rad. onc. that time just said its aggressive and we will treat it aggressively, surgeon just said its one of the biggest tumors I have had etc). She said I was the only one who was giving you hope and I am telling you again that you are going to be ok. That is really comforting and an answer to prayer for sure.


----------



## Christine

LMP--thanks for the update.  It's all VERY interesting.  I hope this Dr. P is the answer.  Can't wait to see how the phone call goes.  I agree with your doctor. I think you have lots of hope here.  I would MUCH rather have your case (no Tg but identifiable tumor), versus raging Tg and they can't find it.  Your case is not that uncommon.  So hopefully it will be plucked out and that will be the end of it.

Hope everyone is doing well otherwise.  Macraven, I hope your next report here is a good one!

Not much exciting going on here.  DS is home from college and trying hard to get internships.  He and my DH are leaving tomorrow to head down to Asheville to visit my MIL for the weekend.  She has been put in an Alzheimer's facility.  Fortunately that is going well for her.  My FIL delayed doing that for a long time but it's been a really good thing.  I get a weekend alone with me and the dog and the guinea pig.  Maybe my loving daughter will stop by but who knows!! Her boyfriend is back from a month long visit to the Congo so she will probably hang out with him.  Fortunately, I'm an introvert and don't mind being by myself.  I'll probably make some plans with my own mother to do something.

Keep posting those updates!


----------



## luvmarypoppins

Hi peeps, yes its me again Chatty Cathy, oh wait I think that was a doll my sister had lol

macraven - hope you are resting and healing and recovering. Prayers fro you continue

Christine - I hope you have a great mothers day whatever you decide. Hear you about the kids. Last year ds2 was with his gf eating dinner at Ohanas on mothers day and I got them that adr too. Interesting about the Congo. A man from our church was from the Congo, Hutu tribe. His dad was the tribal leader and he let a missionary come into a tribe and years later he went to college in France and came to the US. I hope your ds finds a good internship. I know oldest ds actually had to pay to get one, it was part of a college class no less for credit and then the other one he took after he graduated for nothing just to get experience on the resume and that he got a job for 4 years out of sothey are great experience for sure. 

Anywho I called Dr. P's office. Gave the lady a little brief rundown. Told her I have stuff except the first two or reports and I asked about test cds. She said no necessary as long as I have written reports and they scheduled me for next thurs. wowsa and said they will e mail me papers. I didnt get them yet and will call tomm. She has my and dh cells too. 

I also e mail dh bff whos mom lives near the hosp. and didnt really ask but kind of hinted around when I said what good hotels are in the area because I dont want dh driving back home etc. So we shall see. I felt weird coming out and asking if dh could stay at his moms just yet because her divorced daughter and teen grandaughter are also there so dh would need an air matress or something in the living room but it is so close in case something happens to me like a few blocks away. 

Why do I have a feeling that the surgery will be before July. I dont know but I read something once that you should never have elective surgery in July because of all the new medical students etc. I am def. going to ask him if he stays in the or for the whole surgery. They just did a report on this for the tri state ny news channel about drs. leaving the room. 

Also more interesting and scary reading. One question from what she gave me. One of the new fna biopsy afirma reports said inconclusive and said something like hurthle cells present, wth??? I have always had columnar. I will ask about this and then sickening but I read it the or report when I was dying. Words like the airway could not be obtained I had to directly cut into the neck etc. Makes me thank God so much for saving my life. Had to take a break from that one. 

Happy Mothers Day to all however you celebrate


----------



## macraven

I'm in pain and still awake

It is one full week today I have been on complete bed rest 
Only up for the bathroom or when I see the doc or have labs

That's 4 days of the week

Yesterday's ultrasound sound showed both clots still in same place no movement yet 
Or any sign of dissolving 

Starting again on another round of Coumadin now

If nothing changes one doc says surgery the other something else

Feel like I am no better off than I was when this all began 

Total uncontrolled pain

Can't do surgery now as back on that med as of today
Would bled out if done now 

I spend time in prayer as all of you do when at this point

The parathyroid gland surgery on hold and no idea when that talk will resume
Same for the ent for my hasimoto

Truly appreciate yours prayers

I pray for all of you as you do for me


----------



## Christine

luvmarypoppins said:


> Also more interesting and scary reading. One question from what she gave me. One of the new fna biopsy afirma reports said inconclusive and said something like hurthle cells present, wth??? I have always had columnar. I will ask about this and then sickening but I read it the or report when I was dying. Words like the airway could not be obtained I had to directly cut into the neck etc. Makes me thank God so much for saving my life. Had to take a break from that one.
> 
> Happy Mothers Day to all however you celebrate




LMP, it's been awhile but I believe the Hurthle cells are a normal finding.  Just like follicular cells are normal.  Just as long as it doesn't say "carcinoma" or "neoplastic" next to it, then I believe it's  a normal finding.


----------



## Christine

macraven,

Hang in there.  I know you've got to be absolutely miserable.  Praying that you get some resolution of something in the next few days.


----------



## macraven

So nice to read your comments and all others to me

The only family I have
Is husband and grown kids

Kids have a busy life and don't hear from them much

I read others have suffered through that also

I was like that at times to my parental units 
Busy with my own life and cheated my time with with them

Then i grew up and changed my ways to make up from it


----------



## luvmarypoppins

macraven - you were on the top of my prayer list today!!  I am sure you must be going stir crazy, Do you have netflix? My ds are watching the OJ stuff for some strange reason. Do you like to read. I love it so that helps me. I hope you are not in too much pain. I hope the coumadin is helping the clot dissolve. They told me it could take up to 6 mos. for mine to resolve but it was really huge they said. I am sure yours will be much faster. I am sure your dh is a big help to you now too. 

I know what you mean about the kids. Mine live here and are barely here and when they are they dont even ask how I am , can I do anything to help etc. Ds1 is suppose to move out by the end of the year. Time to put the big boy pants on, lol. 

I called the surgeon office again today because I never got the forms they said they were e mailing me. Well I am trying to print them out and running into problems. I will wait for ds3 to get home and help me. Its his day off from the hosp. but he decided to go play school nurse. He hates to sit still. Its over 20 pages of forms. They will charge you if you cancel the surgery within 4 days. I think I have printed about 10 pages of billing and privacy stuff so far, sigh.


----------



## macraven

Thanks MLP
Reading is my favorite thing in life
My reading list starts with Christian books and literature and continues down to walking dead

Hahahahaha

No Netflix and would need a son to take care of that for me
Always enjoy watching movies

Still on bed rest but this week I have been able to keep up on my prayer list and not fall asleep before I have included everyone

Had doc appt today and was shown the X-ray they took this morning

Think some of the intense pain in thigh is the bone splintered during surgery

Was told they do nothing for the splint

Clots still in leg but have Coumadin level tested frequently
They removed the 34 staples
One was snagged as tissue was growing over it

They got it out but the way I was bleeding from one small staple, they realized I was faithfully takimg the blood thinners
Lol


----------



## Christine

macraven,

Well you do sound a little bit in better spirits.  Sounds like your appointment went well enough and at least you may have a reason for the pain.  It really sounds so awful.  

We've got another rainy weekend here, although things might be better for Sunday.  

As to the whole kids thing--my kids are still sort of dependent on me so I do see them enough, but I know that time is running out...my son is home for the summer but when he is at school or when things are going well for him, I don't hear from him.  I try to take that as a good thing, but it's still odd that you can go through all that intense parenting and then, poof, they are gone.  My daughter lives in the city but we work in the same field now so I do get to see her for lunch occasionally.  I saw her a LOT when the boyfriend was out of town but he's back now.  I think the both of them are coming today to do the "obligational" mother's day visit of which I'm fine if they don't.

Now, my own mother (and father) live a few minutes from me but I can go WEEKS without seeing them. Sometimes I feel bad about that, but on the other hand, both my parents are very active (my mother still works part time at 73) and they do stuff.  She also knows what it's like to work full time so she doesn't ever place a lot of demands on me for time.  But, yeah, I think I could do better.


----------



## SingingMom

Christine said:


> macraven,
> 
> 
> 
> As to the whole kids thing--my kids are still sort of dependent on me so I do see them enough, but I know that time is running out...my son is home for the summer but when he is at school or when things are going well for him, I don't hear from him.  I try to take that as a good thing, but it's still odd that you can go through all that intense parenting and then, poof, they are gone.  My daughter lives in the city but we work in the same field now so I do get to see her for lunch occasionally.  I saw her a LOT when the boyfriend was out of town but he's back now.  I think the both of them are coming today to do the "obligational" mother's day visit of which I'm fine if they don't.
> 
> Now, my own mother (and father) live a few minutes from me but I can go WEEKS without seeing them. Sometimes I feel bad about that, but on the other hand, both my parents are very active (my mother still works part time at 73) and they do stuff.  She also knows what it's like to work full time so she doesn't ever place a lot of demands on me for time.  But, yeah, I think I could do better.


----------



## luvmarypoppins

macraven - how are you feeling today? Hoping the pain is bearable even though I am sure its driving you crazy. Prayers for you! I know you mentioned reading. Do you have any favorite authors? I like lots of different genres of the christian books just not the edwardian type stuff. I find that usually boring except for one author of that. 

I am getting my disney fix by watching Monsters Univ. on tv right now lol. It was a dreary gray rainy day here. Even the weather guy said like its rains every week end. sigh. Well I got a survey about the endo. Let me tell you I gave her top marks for everything and said all the doctors need to be like her and she is an asset to the hospital. Good let them read that one. I also got a survey about the outpatient testing. I an not sure which one they meant as I was in two places and they didnt specify a date but the guy I had did both tests and he was really nice too. 

And speaking of books..one author was running a facebook contest and she asked us to comment on what our summer plans were. I said resting and recovering from my cancer surgery and hopefully reading alot. I won!! Its suppose to be random winner though. So another book for the tbr pile.


----------



## macraven

Super!!
You won
Hurray!!


Hope you get a book you have not read yet


----------



## luvmarypoppins

macraven  how are things going. Hoping today is a good day for you.

I am going to start tackling the 20 plus papers mostly rules and releases from the surgeon, only about 3 pages of medical stuff


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## macraven

To be honest, I'm not doing much better

But know I will but will take more time 


That is a whole lot of paperwork you have to complete!!

You need a secretary to handle that job for you


----------



## luvmarypoppins

macraven - sending you these to brighten your day. Are you still on complete bed rest? Thoughts and prayers for you!!

Well who wants to read a novel, because I am sure by the time I am done typing this will be one, lol,. And the avdenture continues...
The visit with a top thy cancer surgeon in NYC. Well to say we were enlightened was an understatement. This guy is fast, efficient and doesnt take much time with you. It took us 2 1/2 hours of bumper to bumper traffic just to get into the city. I called the secretary and kept begging her not to cancel the appt. We were 45 imn. late. She actually thought we were in the traffic that was caused by that guy running his car into Times Square. That was actually a few streets over I think. 

First we saw the nurse pract. She asked why are you coming here and not there again. Hmm, thats easy. I said the surgeon almost killed me and I refuse to go back to him. She asked me when I first noticed the lump, not this one, like in my 30's hmm. She said the surgeon likes history, ok. 

Did I also mention when I looked up online this surgeon is on the surgical board committee of the american thyroid association and also has a grant to study the molecular origin of thy canerr or something like that. Heavy stuff. 

Then I saw the surgeon. Dh was cracking up because the nurse practic said oh tell your son. I said no, he is my husband. I said to him, I must look like 40 miles of bad road, or you look really young. This has happened with the limo driver at disney and also when I was getting the RAI in the hosp. We see a trend here. I promised to inform all new people that dh is my dh and not my son.

Anywho the surgeon is like in a 3 piece armani suit. Hmm, its 97 degrees out. He talks to me. Then he says he wants to scope me. Yup with the suit on. I say what are you looking for. He says he has to see how my vocal chords are because if they are not good he ha to do the surgery another way. I told him one was bruised very badly during surgery. He said he saw it and its ok, not great but acceptable for him. The L side is weaker than the R Then he does his own sonogram. He sees it and says it must come out. He said he is going to do a compartmental dissection and clean out and clean up everything and feels I should not have a problem after this. He feels it was microscopic stuff that was there from the first tumor and has now grown. He said it doesnt matter how many lymph nodes he takes out and the count. Hmm, I really didnt understand what he meant by that. He said this surgery should not be anything like the last one and I should just be sore for a few days. Drain out the next day and only one day in the hosp. huh? Dh and I told him I usually do not recover well. Surgeon also mentioned when he was at the univ. hosp. that dr. who almost killed me was only doing noses and he gave me an odd look, hmm, what is up with that. I think it was a secret signal that he was not the best choice for me. Also he commented, why do you have such a big scar on your neck. I said because they had to open up most of my neck when they couldnt obtain the airway when I was dying. He said he will give me a nice 2 inch scar now on the right side, lol. We all talked about our mutual love for the np at the univ. hosp in the ent dept. At least we all like her, 

It also appears that I am going to the day surgery place. Um, they didnt say this when they gave me the papers. I guess this is how they operate in the city, get them in and get them out. He said I will stay overnight, dh cannot stay with me, sigh. Dint like that at all. The surgery date with be June 9 and I come home st. June 10th. Dh likes that because so much less traffic, but I just looked and that day is the Belmont Stakes for all your horse racing lovers. We will get stuck in that traffic, sigh. We have done that before and it could take up to an hour of bumper to bumper. Just the little part by the raceway no less. If the HOV lane is there we will luck out. Da3 says he wants to go so that would necessitate a hotel room. Dont know when the surgery time is yet but dh wants to drive in like 4 am to avoid the traffic no matter what. Also they have valet parking there. 60 bucks for 24 hours a steal in NYC. 

So now monday I am going to the pcp for the pre surgical clearance. I can only get the ekg there I think and then I have to go to get blood work and a chest xray. My head is spinning because then I have to make sure all this goes and gets coordinated to NYC. 
So I got a nice little early birthday present - a surgery date, lol. Sometime over the week end we will celebrate the b day and anniv because next week is just too crazy busy for everyone. Gotta do it when we can. 

Check in when you can.


----------



## macraven

LMP

Oh my goodness!

You now found the best doc and he listens to you 

Finally an encouragement and someone that knows how to handle the surgery for once and all

You will remember this upcoming birthday forever and be healed

Have you in my prayer list

I have a last minute squeezed in appt Monday morning with my surgeon as he needs to review my situation again

Still on bed rest and still have the two clots

If no progress is made within a specific time period, he is considering surgery to remove the clots

Right now so much is unknown and he is still baffled 

I hope to learn more on Monday his new plan of action 

Hope all are doing fine and have a lovely weekend


----------



## Christine

LMP, wow, this doctor sounds amazing.  Are you feeling good about it all?  Despite having to do surgery, it sounds like really good news.

macraven, sorry to hear that you are still on bed rest.  You must be going crazy.  Hopefully there will be some better news tomorrow.


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## luvmarypoppins

macraven - I hope your surgeon visit goes well today and that he has a good plan of action that you will feel comfortable with. Just wondering if he would consider sending you to a vascular dr. I went to one when I had the blood clot. He was really a surgeon and asked me why I was there, lol,. I said the er told me to see you for the blood clot. But they are nothing to fool around with and I hope you get the good care that you need and deserve. There will be light at the end of the tunnel. Hang on!! Prayers for you.,

Christine - I am feeling ok about it. I just am questioning some of what he says/his surgical philosophy so to speak, like what he said about the lymph nodes. I did say why arent you taking them all out, if you take them all out wont that mean there is less chance for the cancer to go places like that etc. I did emphasize that I dont want to have this surgery again. Meaning - take out everything necessary. I also am not liking the post op stuff. I havent asked and I am thinking I shouldnt because I am sure I will not like the answer and get upset. It sounds like they just keep you in a bed overnight in the holding/post op area pacu, not a real hosp. room because I read we have the ability to seamlessly take patients to the something hosp, if necessary (inpatient area). um o.k. I suppose it will be a group bathroom too, oh joy, lol!! But surgery wise he is the best, 

My new pcp did the pre op today. She talks so fast and I dont know if its a cultural thing for her or just the way she practices. Glad dh was there for another set of ears. Got the ekg there too so 2 things off the list. Ds2 is suppose to take me for the blood work and chest xray tom. He has a field trip for the school but it might get cancelled because of the rain. Its at a farm and I am picturing mud, They needed a nurse and were begging him. 

Does anyone use a patient portal. The pcp suggested I use it because she said she gets messages faster through e mail versus when I call the call center to leave a message for her. So I started the invitation process. Also the surgeon at the hosp has this too so I will check into that. Constant head spinning, paperwork etc. Sometimes its overwhelming because this stuff has not stopped since the end of March. 

Had a nice bday lunch with most of the family except ds3 and we had ds2 gf with us so it was nice. 3 days from today we were suppose to be in Disney, sch is life. I will get my disney fix with the new Pirates movie.


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## Christine

LMP--several of my doctors use a patient portal and I actually REALLY like it.  My GYN is the biggest user of it and it has been so much better just to jot off a message to him in the portal and he gets back to me right away.  I think it's faster for them to just have the doctors do emails (plus they have a record) rather than the nurse taking your call, writing down all the info, then he/she has to relay it to the doctor and back to you and so on.  I love it.  Some of my other doctors have portals but just for appointments and test results.  My endo still prefers to do the whole phone call thing. 

Hope you had a great birthday (as much as you can at this point).  I know it's a downer not to go to Disney when you had planned.  At least you haven't had to wait 4 years like me!!  I keep trying to plan a trip (with my "kids") but nothing seems to work out.  My son just got an internship so he will be working through August 11th.  I don't *really* want to go in August but the prices and air fare might be better.


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## macraven

Now how did I miss LMP birthday ?

I wrote it down being in June 


Ok here goes ......


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## luvmarypoppins

macraven - how did your dr. visit go? Hope they come up with a plan that is good for you. Thanks for the b day wishes.

Well ds3 took me for the tests yest. I lost it with him. He was mad that I temporarily misplaced some of the test papers. I looked where I thought they were. Later I found out they slipped down somewhere. Honestly he just upsets me and treats me like a patient instead of a parent. I told dh for now on only he can take me for any testing unless its an absolute emergency. Ds3 also complained that I should get a handicapped permit. I said yes, I talked to the dr. about it, Added to the list etc. I told him he just does not understand all the stress I am under with all the testing I have had, phone calls, paper work etc. He is out of patience with me for sure. I hope he treats his patients better. I honestly never ask him to take me for any tests because I want him to enjoy his days off. But this did have to get done. We went to a new radiology place closer to our home and it was ok. On the way there a car hit a deer 4 cars ahead of us. I am glad I had my eyes closed. Ds said he saw antlers fly and the side mirror fly off the car but the guy just kept driving and never stopped.  All in a day lol. 

So now I just wait for them to call me with the surgery time. Dh already asked if I could be the first one of the day, lol,. The surgeon said, it doesnt matter what patient you are, I am ready to go any time of the day,. O.K. I guess dh is having nightmares about what happened last time with the surgeon. I didnt go till 2 pm and it went down hill from there. So we shall see.


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## macraven

Hugs LMP 

Hope goes better for the upcoming surgery 
You are not alone with as adult son getting sharp tone from them

One of mine tries to educate me on my Heath issues 

I learned long ago to tune him out

Lol


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## luvmarypoppins

macraven - I hope the med is having some effect on your blood clots and that you are resting, but I am sure its driving you crazy

Yest. my pcp called me and told me all the blood tests and chest xrays were good so she is sending all my paperwork off to NYC. She was asking me about sleep apnea signs.  saw that on the paperwork and also wondered why she never asked me that in the office. 

We have sunshine today. I am enjoying it before the maybe on and off rain for the week end.  Hopefully we will see the Pirates movie over the week end if dh doesnt have a work emergency. 

Have a good week end everyone.


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## luvmarypoppins

macraven -how is the blood clot issues going? Hopefully you are feeling better.

This week is a week off for me, no drs., no tests, yippee!

Nurse from endo just called and said endo was trying to call me, never got a call hmm? Said the message was my new blood test were good with the one less synthyroid on sun days and she wanted to know my surgery date. Yes I need to sign up for the portal.

Also got some ins paperwork. The nuclear scan was like 2500! Wowsa. Glad for the ins.

Didn't see the movie. Dh work emergency sigh. Also more funding doom and gloom for him so we shall see

Check in when you can.


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## SingingMom

Wow!  I sure missed a lot!!!  I am so happy to hear you have found an excellent doctor, LMP.  Just think, next month at this time you will be enjoying the warm weather as you recuperate and all is behind you.   I will keep you in my prayers.

Macraven-  I hope your blood clots have cleared and you are on your way to recovery too.

We just returned yesterday from our Adventures by Disney Spain trip.  O.M.G.  It was fabulous.  Only problem was there was A LOT of walking, and my lower back gave me a lot of pain.  Sciatica and lower back - not sure exactly what was going on.  My feet are still killing me - SO much walking that I got blisters under my callouses! 
But, it was so worth it - I can't believe how much we experienced.  Then, we had two extra days in Madrid with DD's "friend".  suffice it to say, he is a doll and I better not lose my baby to Spain!  I told her he has to move to USA or forget it.  lol    Taxi strike happened our last day, so we had to take the metro to the airport - lugging all our luggage!  That was tough, but we survived!  Today DD is flying back to Orlando and starts her new position in Fantasyland on Friday.  She got a call while we were in Madrid that she was promoted to FULL TIME! We are thrilled for her! 

Now I'm trying to tackle laundry, mail, bills, and photos.  Pick up the dog tomorrow, my nephew's law school graduation Sunday, and then plan to fly to Orlando mid June to bring home DD's bridesmaid's gown for her friend's August Connecticut wedding.   DH & I are going to WDW in July to meet up with friends to spend a week together.  Hopefully DD will have a little time off while we are all there - she will stay with us at the hotel - she made reservations at POFQ but they called her to switch it to Boardwalk due to construction.  Fine with me!!  Excited to stay at Boardwalk for the first time! 

Feel better everyone.


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## macraven

Sad to say blood clots still there
Will be 5 weeks Thursday since knee surgery and Coumadin for clots


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## SingingMom

macraven said:


> Sad to say blood clots still there
> Will be 5 weeks Thursday since knee surgery and Coumadin for clots



So sorry!   Surgery in the future?


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## macraven

SingingMom said:


> So sorry!   Surgery in the future?



Next tests to determine that, will be done later this week

I'm sure sooner or later things will be back to normal

And then I can move on for the parathyroid surgery 

Thank you for asking singingMom

I appreciate all of you and your prayers


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## luvmarypoppins

singing mom - glad you had a great trip. Also how wonderful that your dd got a full time position. I am sure she is thrilled as you are. You are having a busy summer for sure! We stayed at the Boardwalk once. The room was huge but the place was really hard to navigate with a wheelchair. I used it for a walker and had to keep finding a place to go that was not stairs outside etc. Didnt use the pool but our room was right by one of the quiet pools. 

macraven - how did your new testing go? I hope you got a good report. They told me it could take up to 6 months for the blood clot to disappear. I think it was more like 4 but they still made me stay on the med for another 2 months, so it was six months total for the med. I hope things are going in a good direction for you.

Christine - hope your son is liking is internship

I was happy to have a week off from medical stuff. Now its the home stretch this week. I had the pastor and elders of my church pray over me yest. I have been looking at the hotels and gosh just so expensive for the one closest to the hospital, disney prices for sure for deluxe. I will look at one more. Its hard for me to figure out the maps. Ds3 says just take a subway etc. I said look the whole point of this is to be as close to the hosp. in case something happens, sigh. Wisdom def. comes with age. 

Now the bills are rolling in. Today I paid for one endo visit and one rad. onc visit. The rad. onc. charged my ins. company like $425, yes we did talk almost an hour. Oh and I was his last appt. before he went to a hosp. fund raiser where Joe Biden was speaking in the afternoon. 

And yesterday was national cancer survivors day. The hosp. always does something but I never go. Its like they treat thy ca people like second class citizens anyway. But guess who was the speaker, none other than Jenn Arnold from The Little Couple. She actually worked at the hosp. A girl from our church actually said she was mean and bossy to the people. She was only a unit clerk but heard/observed this I guess. I think Bill also grew up around here. Very interesting. 

So now the only big things left are to pick the hotel and wait for the call o wed. with the or time. It will be a good day weather wise. Thank heavens because next 3 days we are having rain. Someone send the sun up here. I think its lost!! lol.


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## luvmarypoppins

Hi Peeps who wants to hear a nice neck dissection story I know you all do so it will come momentarily lol

macraven - I hope you are off the bed rest now and able to move around a little and that the blood clot news is better. Let us know. Prayers for you

singing mom - I guess you are on your way to nice sunny Florida

Christine - glad your ds has a good internship, I am sure there is lots of news in your area today. 

Well I survived this surgery. I just wish for once I could just be a normal surgery patient but that will never happen. I told you this surgeon just does not take any time with you. I guess the top NYC cancer surgeons are very much in demand so I guess I should understand. 

Ds1 decided to come along so they had to find a room with 2 queen beds they finally did and it gave a good discount for the hospital patients which saved us a lot of money. 

We got there in plenty of time leaving at 5 am for the 830 surgery. Got there like 645. They said I would wake up with a cpap machine, fine. Then the or is so small. I felt like it was clowns in the clown car. I counted 8 people and then they were calling another surgeon to put an arterial line in me. The surgery was suppose to take 3 hours and it took 4. They didnt know if I would even get a room and I finally did on the floor. I woke up and had a terrible pain in my R arm. No one seemed concerned about this. They were concerned about this road rash burn looking type thing on my L shoulder. sigh. 

Finally got a room on the 13th floor. This is a mother and baby floor. My roomates mom was allowed to stay but dh was not, no males overnight. It was a strange floor. Ds2 saw a little boy leave with a last day of chemo shirt on and then you hear crying newborn babies. 

Sat. morning the surgical resident came in and pulled the drain, ouch, ouch and more ouch and then took the neck staples out but on surgical glue and a new bandage. Finally the surgeon came in. He was operating as he had on surgical scrubs. He said he caused the burn/road rash thing on my shoulder because of the grounding. I think from the laryngeal nerve box monitoring. It looks terrible but does not hurt. Then I said look at my arm. He got so mad and I think he was yelling at the nurse out in the hall. It really was not her fault it was the ones before her who did nothing.  He said I have thrombo phlebitis in my arm, so now I have antibiotics for 7 days, warm compresses 3 times a day and arm elevation sigh. My neck is sore and I feel week. I try to take the percocet when necessary. He also said it took longer because there was scar tissue and he had to untwist lots of veins and arteries that were in the wrong pace and we will talk about this in the office.

So my next apt. is monday and hopefully we will have the path report back by then. We are leaving at 5 am to avoid the worst traffic and will just hang out in the hosp. lobby until its time to go over to his office. 

Oh the food there was really gourmet, Too bad I couldnt eat or swallow most of it, lol. My voice was bad but its getting better. Ds2 and his gf also came sat to see me. We had 5 visitors in the room at once lol. 

Hope everyone is doing well.. Check in when you can.


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## macraven

Pray the surgery was a complete success!!

You will find out Monday
I can imagine the pain you are going through 

Let us know how visit goes

Prayers still being said



About me, another blood clot

I see a new doc tomorrow


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## Christine

LMP, glad to hear it all went well and glad it's over with for you.

How did you get the thromboplebitis in the right arm?  Is that from the IV line?  That is so weird.

Hoping for good news on Monday!


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## SingingMom

LMP - God love you!  You've been through SO MUCH!  I hope this is the LAST one!!  The thrombophlebitis angers me.  That's something that should have been noticed when you first mentioned it.  Grrrr....   I know medical staff is overworked (my mom & sister were both RN's in large hospitals) but that's just careless.  I hope you feel better.  Take it SLOW.  Can you take something other than Percocet?  I hate that stuff.  Just made me wonky - didn't help the pain, so I stopped taking it.  I like morphine.  LOL  

Enjoyed my visit with DD - did "mom stuff" like pick up her bridesmaid gown to bring home, etc. but the weather was icky.  She worked a lot, so we had a few late dinners.  I had some free time, so I cleaned her apartment (lol) met my cousin for lunch, went to noon mass on St. Anthony's day at the Basilica, and went shopping at the outlets.  DH and I are returning mid-July for a mini-vacation with our friends. DD booked us at POFQ but they called & said they overbooked & would it be ok if they moved us to Boardwalk!  Umm... YES!  Never stayed there before.  She'll stay with us, but I'm not sure of her work schedule yet.  She's been working at least 52 hours a week.  But, she loves her new spot in Fantasyland.  Keep making that magic!


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## luvmarypoppins

macraven - how did the visit with the new doctor go. I hope he had some better insight to your issues and has come up with a good treatment plan that will help you to get to feeling like yourself again. Hang in there. You are in my prayers! 

Well peeps gather round for another nice chapter in The Thyroid Cancer Story, hmm this chapter should be titled "Just because you go to a top hospital in NYC and see a top surgeon you will still shake you head and go hmmm! lol

Also I think these trips into NYC are wearing on dh,. I hope the next one in July will be the last one. We have to leave well before 5:30 am to avoid all the traffic and we just hang out there. Dh even came home and took a nap before going into work for a little while. 

I am glad we were the first appt. at 9am. Only one other guy waiting. As usual he spends very little time with you. He took the bandage off and said my choking feeling and tightness is due to all the neck swelling which will subside over time. Went over scar care. I said I am not one of those vain type people. Hello dr. - look at my neck already, lol. Then we ask about the path report,. He said he took out 18 lymph nodes and 4 were cancerous. The biggest one was 3 cm. The path report said 3 mm, huh??? Head shake. He said the best part was that there was no extranodal extension and that is all they care about. Obviously when I asked him well what about the columnar cell variant. He said its just met pap. If you want me to have the path people look at the lining for the variant I can ask them to do that. Um shaking my head. Wouldnt they do that anyway at a top place. He said the aggressive variant does not matter. Um. I know this guy is on these top boards of stuff in the country but what DOES matter??? I think what does is the production line of people he had in the waiting room when we left 45 minutes later there were another 6 people waiting. OK His surgical skills are good but everything else, sigh, sigh, and more sigh. 

Remember he said he would discuss why the surgery was longer and the tangled arteries and veins. I forgot to ask and dh says why didnt you ask after we left, sigh. The surgeon did not bring it up. Well next visit this will be asked by me for sure. 

I made him look at my arm and he said its healing well and the anesthesia people caused that. um ok.

I wanted to shake his hand and say thank you but he seemed to pull back so I ddint pursue that. Strange indeed. 

I guess I would go to him again  if I really had to because anyone is better than dr. who almost killed me. I saw his reviews on line and people wrote run and stay away from that guy lol. Dont I know it for sure!!

My neck is itchy and sore and swollen and I only had one choky feeling lately where I did almost choke on something.  So its a process. 

Later dh said lets start planning that october trip to food and wine, what a hubby! 

He did say there is a 5 to 10% chance that it will recur. I asked that. He didnt offer that info on his own. That will probably be me again with my history,

Happy First day of summer everyone!


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## luvmarypoppins

Greetings fellow thy people!!

macraven -how are you???

Well I am whiny  My neck is sore and swollen. Its like a huge lump in a certain area. I touched it a little. It seems like it would be fluid that would drain into the jp drain if it was still in maybe???

Dh is concerned about it. Ds3 said - yes its swollen. I know dh doesnt want to drive into the city, so we did talk about sending a picture to the surgeon if necessary. I know it will take a while but I just dont like the look and feel of it. My next appt is not until July 24th. So I will see if I should do anything. 

Ds3 also got a cold from a patient and ds2 has some of it plus allergies so I am telling them both not to get to close to me because I def. dont want that. 

Oh and I forgot to type last time that we did ask the surgeon about follow up testing and how the endo feels about it - pet scan. He said if she really wants the pet scan, um I dont. He said it would maybe be 3 years of pet scans once a year and then a sono also once a year. I said I currently do a sono every six months, not her recommendation, she is for a yearly one too but I told him I feel better with 6 months. He also forgot that I told him before my tg goes not register and I am non avid rai now. gheesh. Cant he review the chart again??

he said it will actually take 6 months for any cancer to grow back (thy) so that is the first time you will actually pick it up and see it on any test. He said if I am happy with the every 6 month sono then that is o.k.

And what else did I do today why pay for another endo copay. This time she charged like $225 and that was just to talk surgeons and give me all the print out stuff to take. Didnt even check my neck, gheesh. Also got some nice toll bills for going into the city, Cancer is $$ lol! Dont we know it!!

Check in when you can.


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## Christine

Hello, LMP.  Yes, you should get the swelling checked out.  Probably localized swelling but who knows and you don't want to get into an emergency situation.

Nothing much going on here.  I've been working on a replacement countertop project in my house and it's consuming.  My husband painted our 23 year old cabinets so the existing (laminate) countertop looked awful.  Moving to granite finally but wanted to keep it on the lower priced end, which has been difficult.  In the middle of it all, I've decided to remove some lower cabinets that make up a "desk" in my kitchen.  Totally useless.  So I'm going to fill that area in with some new (cheap IKEA) cabinets painted to match mine and I'm really excited about those.  But just more work!

My son is in week 4 of his internship.  He likes the job--hates the commute.  Just about 2 hours home each night.  Traffic is awful around here.  But it's not forever.  At the end of July, he goes to Charlotte, NC with the company to some big conference. He has to give some presentation there and "work" the conference.  So it's all good experience.

I'm looking forward to the July 4th holiday.  Taking off the 3rd to give myself a 4-day weekend.

Hope everyone else is doing well and, macraven, I hope things are improving for you.


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## macraven

Hello friends!!!

Well I am 8 weeks and few days out from surgery and the clots finally have dissolved
Stopped Coumadin finally

Knee double the size as I have swelling issues
Ortho doc said it should be better at the time of six months out period 

Did get established with family
practice doc as unable to get appt with any endo docs

Let's say it is out of the frying pan and into the fire

He told me I do not need t3 or t4 lab only tsh for prescribing me synthroid and he has given me a referral for a surgeon ent for the parathyroid gland issue 

Really do not think I will use this doc as he hasn't limited experience with parathyroid glands

All he is aware of my test results show I need surgery 

Thinking of checking Vanderbilt or Emory for this surgery

Had planned to redo flooring in the house for the upstairs rooms
But just looking online for supply costs and once I have that figure will seek out contractors on face book in my area

Figure one of our projects can be started on within the month

And now going to try to find someone to mow our yards
It has become to much for Mr Mac in the heat here
We have almost an acre of land and we only have the push mower
It is a weekly job

Usually late February is when we have to start mowing
Last November end of the month was last of the year for lawn care

But do enjoy warm weather most of the year

Christine, hope your remodeling goes smooth

LMP hope you can do the pics with the surgeon and do not have to make the extra drive to the city to have it looked at

Who all has trips coming up?

Mine is October but need to book a flight
Could not book until dvt issue dealt with
Now I see prices are high for my travel


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## SingingMom

Thinking of all of you and hope you are feeling better!!
Spent the long weekend in the backyard - had my family over Sunday for a pool party. 
Got back the 900 photos from our Spain ABD - waiting for a rainy day to sort through them all!
We will be in WDW a week from Friday - meeting up with friends.  DD got a great CM rate and they moved us to Boardwalk, so this should be fun!  I truly don't mind staying at DD's apartment on my monthly visits, but this is more of a "vacation", with DH able to join me.  Gives DD a change of scenery, too. She'll stay with us and go to work from the hotel.


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## macraven

Looking forwards of your pictures!

So nice for your next trip and you have a great hotel to call your home when there

Mr Mac and I ordered the flooring materials for the upstairs rooms 

Now waiting for the contractor to connect with us

Hope all have a great 4th today !


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## Hisgirl

Just to share my experience....I had a nodule that came back inconclusive. The doctor decided to operate and remove that half of my thyroid. I was put on synthroid and had pretty severe reactions to it because come to find out, I didn't need it. My other half was producing plenty and the synthroid was throwing me into unhealthy levels (I felt like I was about to have a stroke!)
The actual biopsy was painful, to be honest. They had to go back in and I insisted on heavy meds. The surgery wasn't too bad, and I had zero pain afterwards. The surgeon didn't believe me and was shocked. This was over ten years ago, and I continue to be checked out by my endo. My numbers have stayed in the normal zone and I have not had to take synthroid. I get an ultrasound once a year to keep an eye on another nodule on the other side.


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## luvmarypoppins

hisgirl - welcome! That must have been scary about the synthroid and you must have a high pain tolerance level too! Glad they are being diligent and keeping an eye on your nodule. 

singingmom - I am sure your pictures are beautiful and cant wait to see some of them too. I hope you have a great trip with your dd. We have stayed at the Boardwalk once. Not the DVC side but the Inn side. The rooms are really big. I didnt go in the pool as the clown creeped me out and we were too busy going to the parks. Cant wait for your Disney update too.

macraven - good for the home updates. We need alot and I am not doing them to the ds all move out. My top things now are a new stove and we do need the driveway looked at. Its showing alot of wear and tear. 

christine - hope you had a nice long week end.

Well here is a riddle - what is red, white and blue? 
Answer - me,. LMP. I am wearing a blue and white shirt and the red part??? Hmm, that is none other than my neck. Oh yeah, just another day in post neck dissection can anything else go wrong saga.

Dh came home monday for a quick lunch. He looks at my neck and says have you seen your neck. I said no. Honestly our mirror is up high in the bathroom. I go in the ds bathroom and look and omg my neck is so red o the surgical side. Dh takes a picture and we call the surgeon in NYC. I talk to the nurse pract. I also happened to have a picture dh took of me thurs. where I was none too happy in a rest. because he wanetd to have me look at my neck up close for some reason. It was fine then but glad we had that pict. Anyway she said she showed the pictures to the surgeon and he could see the bad difference in a few days and was very concerned about it. He said its not a hematoma, it is not a wound infection because that happens 3-5 days post op and he does not know what it is.  They said maybe cellulitis? So he put me back on a 10 day course of cipro. sigh. He said if I am having trouble breathing or swallowing I need to go to the emergency room by me. So now we will see what happens and dh marked me and outlined my neck like they did with my arm in the hospital to see if it is spreading which it is not right now. Needless to say I am staying inside right now, My neck feels tight which they said is just the scar tissue, sigh. So its wait and see right now.


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## Christine

LMP,

Oh my goodness, you are really have a fun time with this.  I hope it turns out okay.  Does it hurt or feel funny when you touch it?

I had a pretty good weekend.  It was 4 days off in a row for me so that was nice.  Got a lot of stuff done.  Went and picked out my granite and paid the deposit.  

Back to work today.  I tell you, it doesn't take but a few hours to stress me out!!  I thought it would be a quiet day but it was one thing after another.  At least the traffic was light.

@Hisgirl--that's great that you don't need to take Synthroid all your life.  When I initially started on this journey, I too, was only supposed to half of my thyroid out.  My surgeon did tell me that the remaining tissue would pick of the slack and do all the work, so I guess that's not too unusual.  

singingmom--sounds like a nice trip coming up.  I was trying to plan one over the weekend (to hit Disney/Universal/beach) on August 12th but I got overwhelmed and gave up!!


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## SingingMom

LMP - geesh - stay on top of that redness!  Praying for you to feel some relief SOON!!


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## TexasErin

Okay, since y'all are well-versed with thyroid stuff, I thought I'd post my issues here.  Sorry for the long background information, but I have read that untreated thyroid levels can cause a number of issues.

Up until beginning of May, I thought I was like one of the healthiest people on the planet. But then I got what appeared to be a stomach bug or maybe food poisoning, so I went to the doctor when I started pooping blood.... TMI, I know. The NP did a follow up to make sure I was all better.  I was still having some stomach pains, so she sent me for a CT scan with contrast on May 16 to make sure that I did not have any intestinal blockage. The results came back negative for that, but my liver is inflamed three times the size it should be. So she sent me to a gastroenterologist who finally got me in June 22.  The specialist sent me for more tests, and I had an echocardiogram on June 22; the specialist's office called back a couple of days later and said there was nothing concerning. 

Then I had a liver ultrasound on June 27. It showed the liver inflammation is likely due to right-sided heart failure. I'm very scared. The cardiologist appointment was set for July 14, but they had a cancellation and moved it up to July 12.  There is no history of heart failure or disease in my family. I am 45 years old and weighs 130 pounds. I don't drink or smoke. The gastroenterologist called me after this info about possible heart failure and mentioned that she still trusts the echocardiogram results...and that whatever I have has probably been there a long time. Cardiologist appointment coming up.

However my dad had to have part of his thyroid removed and my younger sister has to go every couple of years to have her thyroid checked because it is enlarged and she has some places that they are watching. One of the blood tests that they did only show that my Thyroid Peroxidase AB was 121; the normal range is under 9. So my PCP did a thyroid panel and levels were in "normal" range. My PCP said that thyroid levels can go up and down. She ordered a thyroid ultrasound and it was slightly enlarged. My PCP has started the referral process to an endocrinologist, but they have not called yet.

During all of this, we went to Disneyland. I had some days there where I felt kind of crummy- we even gave up FPs for Space Mountain since I just really wanted to go to bed.   This is totally not like me at all, LOL! This was when I first started really noticing my neck feeling swollen, although I had wondered about it in the shower a couple of times several months ago.  I've had various other symptoms that have made me wonder whether I have Hashimoto's or lupus.  I sure never saw the heart thing coming! 

Could heart issues and joint pain be from thyroid stuff?


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## luvmarypoppins

TexasErin - welcome, wow you have a lot on your plate for sure. I used to live in Texas for years. Still miss it. I dont really know the answers to your questions. My family also had heart issues and my sister died from a genetic syndrome which I dont have. I know with Hashi's your levels will fluctuate. I know Christine here is much more well versed on all of these things then the rest of us. Its good you are going to an endo. I think they will be a good source of information for you too and order any other tests that could be needed. Hope you start to feel well soon. 

singing mom - have a great trip. I am sure it willb e hot but then its pretty hot in the tri state area now too

Christine - your kitchen reno sounds great

macraven - your floor reno sounds greast oo. Did you choose a dark or light color.

We will probably got alot of this place again before we sell it after the ds move out. Or at least do it slowly at some point lol. 

Well guess who called me yest, well actually 7 pm at night. I didnt answer because my old hone didnt ring as usual. It was the POA from the surgeons office in NYC. She said the surgeon and then I heasrd he catch herself before speaking the message and I know she wanted to say is concerned but she said he would like to see pictures of your scar and can you send them to him. I told dh I know exactly wh they called because today actually only 1 more doe of the cipro left, So last night we e mailed him 2 picturs. I am not concerned if he does nt call me back. I figure it he will beconcerned then he will call and leave a message. Also it willb e good to see over the week end if I get worse again without the antibiotic. 

In toher news, hmm how much does a lymp node removaol cost and 1 daya t the NYC hosp. Well apparently they billed my ins. company $89,000!! Wowsa. Of course they are not getting that from them. So far I have only had to pay $100 but they said like $5k of stuff is pending so we shall see. Thank God dh has good insurance.


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## luvmarypoppins

sorry for the typos, I always have so much trouble posting stuff here


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## macraven

_LMP, I must have gotten off cheap 
My TKR was $62,000

Finally got a referral to an endo 
now I have to wait for an appointment 

My family doc has been looking for the last 4 weeks to find one taking new patients 
He sent a doctor request for setting me up with an appointment 

I assume the wait for being called with the appt date will be weeks from now

For the orthopedic surgery, first appt was January 12, first opening for that surgery was April 27

Things go slow here .....


TexasErin
Once you are working with an endo, you'll find out what your issue stems from 

I'm on synthroid for the past 30
years as I have hasimoto

My synthroid level changes frequently as my levels are always changing which is common with an autoimmune situation 
I have blood draws every 12 weeks
No issue with my other organs due to hasimoto but I also have as my main medical issue as being hyperparathyroidism_

_
Hope you are seen by the specialist soon and learn more !

Hopefully others will be able to add their knowledge and experiences as it will help you

I started to seek out info on sites as I was desperate for help and answers
Anything that another person experienced I was interested in so I could learn more than just what was on medical websites 

Some of the symptoms I get might not be the same as others experience_


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## luvmarypoppins

Hi fellow thyroidians, lol is that even a word

Well this is actually the first time I have been feeling like myself in a long while post surgery. I must have looked really bad before because people at church were saying oh you are looking good at church yest. Hmm, I guess I must have been looking pretty bad and they didnt want to say anything lol!!

Guess who sent us a nice e mail and said he liked the pictures of how my neck was looking, yup no other than Dr. P my surgeon. Hmm, I am impressed with this guys follow up for sure. He said see you on the 24th! 

Well dh is kind of bursting my Oct. Food and Wine Bubble. He has to go to South Korea for a week for business sigh. That does not even include the travel time days. And then of course there is all the prep he has to do ahead of time. So there hopefully not goes our trip. I know he will try to accommodate me. I have a feeling this will not be going well sigh.


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## Christine

LMP--so glad things are on the upswing for you!!  It's been a rough few months for you.

Not much going on here.  Just working and then working on my kitchen on the weekends.  Almost done.  I'm still trying to figure out my vacation.  It's actually cheaper for me to fly to Florida and do Universal or Disney then it is to rent a place at the beach (eastern shore) for the week.  I would go to Florida but my son (22 y/o) is whining that he has no one to ride the big rides with him.  It's true.  So, no point going when he's going to have an attitude.  I guess I'll end up doing nothing.


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## luvmarypoppins

Well I hope I didnt speak too soon because now today I noticed my neck is starting to get red again above the scar line, sigh, sigh,. Dh came home for lunch, I didnt ask him he just popped in and I did say after you eat look at my neck He said yes he notices it too. Gheesh.

I will keep an eye on it over the week end. So happy we are going into the city Monday. Because if it doesnt go away then the surgeon can see this for himself. Might take some pictures to show him just in case its something mild that goes away. 

What do they say - a picture is worth a thousand words lol!! In this case it sure might be.

These are the questions I am asking the surgeon on Mon.
1. What is the neck redness issue?
2. Explain the twisted arteries and blood vessels
3. On the path report it says one ruptured lymph node. I did look this up on line (definition). I am wondering if the ruptured one had cancer in it? Does this mean it could be there microscopically again?
4. I want a copy of the surgical report for the endo since it was done at another hospital,. I think I need a permanent record since all my stuff is at the univ. hosp. ID they charge for it, hmm?
Anything else you would ask if you were the patient? I already discussed the statistics of recurrence and the scanning protocol. Now with non avid and tg not reliable. 

Dh also informed me that he will be doing a flurry of traveling in the near future. One trip to the west coast. One trip combined to France and Milan, Italy and then of course the planned South Korea trip. In the middle of all of this I have an endo visit, blood tests, sono and I think a bone scan and then a pcp visit before Sept. 12. Never a dull moment.

I am waiting for dh to see all these dates before I start the trip planning. 

Hope everyone has a great week end.


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## SingingMom

Just back from Disney.  Hot Hot Hot!  Really heavy humidity.  Would have spent more time inside or at the pool, but we were traveling with friends who of course where there for the parks.  DD had a few days off and switched shifts with a few, so she was able to be the official tour guide.  That thrilled our friends.   Very impressed with our Disney Girl .  

Stayed at the Boardwalk for the first time.  Room was lovely.  I thought the set up of the resort is lacking however.  Had to go outside to the actual boardwalk to get to shops or any type of food.  Thought it was very inconvenient.  Only Jelly Rolls stayed open late.  The actual location is great with Epcot & Studios, but I think I'd rather stay at Yacht and Beach Club.  Went over to Dolphin for lunch at the Cabana Bar on our last day - the lobby is all covered for renovation.  Will be interesting to see what it looks like when they are finished.  

Bon Voyage Character Breakfast was adorable.  Food was excellent.  We never do character meals, but it was the 21st birthday of our friends' daughter, so we all went.  Great interaction with Flynn Rider, Rapunzel, Ariel, and Eric.  

Mess with our flights going and coming.  Thunderstorms caused lots of trouble.  But...  all in all, we had a very good time with our friends.  Lots of laughter, lots of alcohol!  

DD is coming home for a wedding in August, so I won't go back to Florida until September.  We are going to see "The King and I" at Dr. Phillips.


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## luvmarypoppins

Well I know you are all wondering how my surgeon visit went today...well it didnt happen.

Dh and I were on the road by 5:15 am. W got about 4 exits from our home, heard a dinging alarm and we pulled over to the nearest exit and gas station. Dh saw something happened to the tire pressure valve, then he tried to get the tire off but something was jammed and broken and welded or rusted on.
Oh did I mention he was doing this all in a pouring rainstorm. He was soaked to the bones like a wet puppy and then some.
We were really thankful we didnt break down by ny city because that would have been a nightmare and a half for sure. God was hearing y prayers!!

So we got a tow truck. Dh road with the toe truck, ds 2 picked me up. Ds 1 picked up dh from the tire place and now we are waiting for the call to tell us its fixed so dh can pick it up. This is costing us $$$$.

In the meantime I left a message on the surgeons answering machine since I was the first appt. So now I called them again. She says come thus. dh says no because he has meetings,.

Now the surgeon is going away and my next visit is not until Aug. 21st. Such is life. So at least I know if I have a problem I guess I will just have to go to my gp. Dread if its something worse because now before that time it will mean dr. who almost killed me sigh. I will think positive because my neck is looking pretty good right now. 

So thats life today. And poor ds1 went for an interview and the lady said she had no record of him in hr. He showed her the confirmation e mail.from someone else I think. Now he says he doesnt want to talk about it. sigh. But he is looking for another job too. 

Ugh, I need a vacation sometime.

Hope you enjoyed your cheese while I had the whine!!


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## macraven

what a day you went through!!!

you need......


car trouble are real headaches and it is always expensive


it is a darn shame that you can't connect with the specialist in NY

hope the gp can do magic with you so you have answers and help


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## luvmarypoppins

Well in the latest chapter of when is this summer ever going to end because it really has been a doozy one...

I now have an upper respiratory infection. Got this from ds3 hospital germs that he got too.
Dh took me to the pcp. I actually saw the resident and then she came in. I took what I could get. She feels I dont have srtept and just thinks its viral and does oit want to give me antibiotics unless it gets worse. So I am just takeng some coricidin hpb stuff. She heard how terrible my voice was and it seems my trachea is getting tight mostly at night. I wake up in the morning and can barely talk. sigh

So she said call her next week and she will give me an antibiotic if t is not improving.


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## Christine

LMP, hope you are feeling better by now!  I think *I* am coming down with a cold but I hope I'm wrong.  Whenever I get a cold, it seems like they hang around for about 3 weeks.  

My son went to Charlotte, NC with his job for their convention.  He had a good time and had to give a presentation, but he really enjoyed it.  But he picked up a cold on his second to last day there.  By the time he got home, it was raging.  On Saturday, we all helped my daughter move from one apartment to another and I was trapped in the car with him as he hacked away and blew his nose.  Now my throat feels a little funny...Grrrr....so I was supposed to take some time off next week.  I have nowhere to go so it would be a "staycation."  Bet I'll have a cold.  But I hope I'm wrong.

Had my 6 month endo visit yesterday.  The labs came back already.  My TSH continues to drop (right along with my estrogen I guess!!).  I'm going to hang on to the dose I'm taking because I feel okay, I just don't sleep well.  My TSH was 0.1.  Not horribly low but it is coming down.  The less estrogen your body produces the less T4 you need.

He did a CBC and cholesterol.  CBC was normal.  Cholesterol was down to 168.  Losing 16 lbs made a HUGE difference.  Last time it was over 200.  Both of these tests were done non-fasting though so they would probably be even better if I did them fasting.

Otherwise not much exciting to report here.  My son's internship is almost over and he goes back to school around the 26th.  While I really enjoy him, it will be nice to get some peace and quiet.  My kitchen remodel is almost done.  Just have to get the tile backsplash done.  Would love a trip to Disney but I just couldn't work it out. Maybe I'll shoot for mid-December!


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## luvmarypoppins

Christine - glad your endo visit went well. Hope you didnt get the cold and that your kitchen I am sure looks great

macraven - how is the endo stuff going for you with the referral? When are you going to food and wine. I think we might go Oct. 26 as dh will be in South Korea before that but ds3 is pushing me to go in sept. too.

Well I finished booking all the test appt. stuff. Gosh I will just be glad when this summer is over but then in the fall dh will be going travel crazy so I will have to deal with all that stuff.

So tomm. is sitting with the masses for the blood tests since I couldnt get an appt. 6 days out
Mon. is the surgeon IN NYC
Friday neck and thyroid sonogram
Sat. DEXA BONE SCAN
30TH ENDO

Then I have to do the eye dr. for both dh and I and me for the dentist big time and it will be lots of $$$ as I need maybe a root canal and at least a crown or they will have to pull the tooth. 

check in when you can


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## macraven

hope you both are over the colds and doing better now
and hope the infections are out of your system also.

Christine, your test scores look really good for the cbc, cholestrerol, etc !
LMP, looks like you have more testing yet to do.


i did see the new endo and have been doing labs with her.
get the results from one lab which leads to her needing a different test.
my 3rd lab appt in two weeks is this coming tuesday.

at first visit with the new endo, she had labs sent to her from past doctors and told me i need the parathyroid surgery within the next six months
(have not made a decision yet, too overwhelming right now)


either i go with the Dr Norman center in Tampa or back to my surgeon in chicago.

Tampa center only needs the past results faxed to them at this point

not sure which one to use.....

see ortho surgeon end of this month,
finally will be released from him
knee has a long way to go due to swelling
last told 6 to 12 months out from surgery is when the swelling will go down.
maybe because of the two blood clots i had is the issue?
(been 3 months and 20 days since surgery)


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## luvmarypoppins

macraven - do you lkke the new endo? Did she recommend that you go to that place in Florida or did you research it yourself? I hope things can get worked out for you and that your new tests will help get a good plan in place for you. I am sure you want to feel like you.

Well the blood tests were great. We had to go early because dh forgot to tell me he was working, so we were there before 9 am and there were only 3 people there, in and out. Dh said we have to do this again next time lol.

Then yest, was the surgeon Its no easy trip there and we left here by 5:45 am. The nurse took my bp. He came in and didnt even shut the door all the way, but most of the way, He puts on a pair of gloves and checks m neck. Said its good. Then I proceed to ask him my questions.
1. What was all that redness on my neck - answer I dont know
2. What did you mean about the blood vessels and arteries being twisted.?He said its either most likely when they fixed the L side and then my R side had to make new pathways for the blood flow since I lost that one vein. Could be I was born like that but more probably the other.
3. What does the ruptured lymph node mean that was on the path report. Not what I thought that it ruptured inside me. He said t was done doing the path report that it broke or him getting it out?
4. Asked again about testing since I am non avid and no detectable tg. He said um refresh my memory - who is your endo again. Gheesh!! This guy cant even take the time to read the chart again or even an electronic medical record.   He said sonors six month and pet scan a year if the endo wants that and if it comes back dont worrry "we will take care of it" Yeah, I guess he will since surgery is my only option if it can be done and an accessible and safely.

All of that took about 7 minutes and then he wants to see me again in 6 months. He said that will be the last time. I made the appt. Its feb. but I am calling to cancel it in the new year. Dh doesnt want to drive there again and he doesnt do anything really. I feel like a little fish in his big thyroid sea. There were like 10 people when we came out before 10 am. I am sorry but I think that place is turning inroo a thyroid mill I told dh. Just quantity but that is what you get in the city I guess. It is quality but at lightening speed. lol. 

christine - what are your thoughts on this. I didnt ask this time but last time he said when I asked him what about the columnar cell variant on the path report. It was not listed. He said if you want me to look at the lining (him asking the pathologist to do it) I will I didnt say anything yes or no. 

Now dh says I should sk the endo. Now I am worried my ins. wont pay for it. I am wondering if its that important since right now I have no spread distantly, they know I have it, it wont change the treatment since I am now non avid and tg undetectable etc. Your thoughts? I am guessing if it wont cost me anything I should ask maybe? If its thousands or something, no thanks. I think we have a good enough picture.

Ds3 and I went on a little adventure yest to a park to see the eclipse, then to the beach to eat lunch. I just stayed in the car and watched the ocean. I was just too exhausted from being in the city all morning. Then we got some ice cream at a new place. I didnt like it and didnt finish it. 

Ds1 also went into the city yest afternoon. He took the train. He went to the hospital that Bill the dad/husband from The Little Couple went to. I think its affillited with Columbia. He said he needs a hip replacement. This is the 3rd dr. that told him this. So we will see where that goes. 

More tests for me, yea!


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## Christine

LMP, I think I would ask for it and also ask on the cost.  As far as I know, further pathology doesn't cost the patient but I suppose it would come down to how it's requested from the pathologist.  I'm just one of those people that wants to know everything, but you are correct that knowing doesn't really change anything so maybe you just don't want the aggravation.  Either way you go, I think you're safe!


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## luvmarypoppins

Greetings thyroid peeps!
Yesterday was the endo visit. My testing went well as could be. I had my regular sono gal whom I just love. But when I had the dexa scan the tech had me lay on my side and I heard a pop. I was in misery for 2 days with my L ribs and even had to take 2 of the pain pills left over from my surgery. sigh. The endo ordered rib xray for me which she will call if she sees something.
My sono is clear, it better be lol!
My tsh is 2.2. Hmm, this use to be undetectable,. So she said she will have me do blood work in a month and if its still like that she will up the synthroid depending on the number. She said it could be an absorption problem or my body being wacky with all these infections, she does not know yet. Also could be stress, hmm like I havent had enough of that lately lol. 
Talked about testing and she says 6 month sonos and yearly pet scan because the sono cant see lymph nodes behind the thyroid area.
Showed her the red neck picture.
She said she does not like the path report they sent and its terrible and she is calling the pathologist in the city next week. Besides the typo of mm which should be cm, she said it does not even say pap, its just says carcinoma. Hmm I will have to loik and see if she has the same copy I have or maybe I jsus read it wrong too. She will ask the pathologist about the columnar cell stuff. Great she went to medical school there too I think so that should help. 
And ready for this one... I almost fell over when she said this. She says, oh yes I called my colleague at MD Anderson about you before I sent you to surgery.What??? She never said this before. She said she wanted to make sure everything was good and she had done everything possible or something like that. Well I almost fell on the floor that she would even do that wowsa and wowsa!!! 
And in other stress stuff, ds1 is thinking of having his hip surgery oct. 4th I think, then of course dh is on his way to South Korea soon after that and now dh is saying lets go to food and wine, huh? I dont know if ds1 can be on his own but ds3 will be around, yup life is always interesting. I did check on some rooms, cant get an ap room, cant use my miles for a room and the cheaspest room at the swan or dolphin one night that is almost booked up is like 325!! 
Check in when you can. Have a great holiday week end everyone. I will be saying au revoir and ciao to dh. I hope he brings something good back only food really.


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## macraven

How can you turn down a trip for f&w?

Go for it!


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## SingingMom

Glad to hear the sono was clear!! 
I'm heading to F & W on Monday.  Our friends are will be down for vacation and asked me to plan my monthly visit to my daughter while they are there. lol
I had already made plans for DD & I to see "The King & I" at Dr. Phillips Center, so I just added some more days to overlap.  Poor DH has to work, so I'm stocking the freezer for him.  

trying something different this time - I'm not renting a car - DD got a CM rate at POFQ for a few nights on her "off days", so I'll take Magical Express, then when she goes back to work, I'll stay at her apartment, and take her back & forth to work, using her car.  Then the night of my visit, she got one night at Coronado Springs and I can take Magical Express back to airport.  Since I'm there a total of 10 nights, it will probably not cost much more this way than renting a car.  Guess we'll see how it works out!  

Weather this summer at home has been eh - probably nicest weather was while we were away in Spain - so I'm looking forward to some Florida sunshine!


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## Christine

Hey everyone!  Happy end of summer.  I agree that the weather has been very "meh" for the last few weeks.  Glad I never planned that beach trip after all.

I'm just taking Friday and Tuesday off, trying to burn some leave.  Not doing much.  My daughter was/is here at the house today so we did a little shopping.  I finally got my backsplash tile ordered this morning so that's all set for the 9th of Sept.  Maybe then my kitchen will be together.  

Otherwise, busy time for me coming up.  I'm a financial person so it's end of the fiscal year for me.  Then all the worries as to whether the government will close down or not.  All gets very tiresome.  

Glad to hear everyone seems to be doing well.


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## macraven

Nice to have work days you can burn and be productive at home

Had to put a hold on my parathyroid gland surgery 
Still active with new endo with adjusting synthroid levels

Did my 4 month check up and X-rays on knee
All looks good

Broke left foot on Monday 
In airboot for 4 weeks and leave days after that check up for Orlando


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## SingingMom

Sorry to hear about the broken foot, macraven!  Go easy while you are in Orlando.  That vacation is always a lot of walking - hard on a HEALTHY foot!


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## macraven

Thank you


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## Christine

How did you break your foot?  Gosh, I hope it heals fast for you--you have been through a lot lately!


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## luvmarypoppins

macraven - so sorry to hear about your broken foot. You have been through so much too! I hope your foot heals and that you are not in too much pain. The food and wine trip is great to look forward to. Glad your knee seems to be improving.

singing mom - I hope you have a great trip. Have never been to either of those resorts. I think the pool at Coronado looks fun. I hope you wont be in the midst of the upcoming hurricane. Have fun and stay safe! I would love to hear about all the food and wine foods of course.

Christine - I hear you on the weather. It has really not been good weather wise here and today is stormy too. Also yes I am sure your end of the fiscal year is crazy. Dh goes through this all the time. He has to commit stuff or lose it and then they say well we are having layoffs. etc. I think this year it was 120 and they offered packages too but dh missed it and I dont think we could do it insurance wise right now anyway. 

My L ribs still hurt sigh but alot less for sure. I say ribs but its my whole L chest area. Its a soreness that wont go away.Talked to dh in France. He said there were lots of people in wheelchairs at Lourdes. Now he is in Italy. Ds1 may have his surgery Sept. 27 and ds3 and I have been talking about a trip to food and wine. He has a lot of time off soon.


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## luvmarypoppins

macraven - how is your foot doing? I hope it is healing and you are not having too much pain and not too much difficulty in walking around. 

singing mom - were you in wdw during the hurricane. I hope you and your dd made it through ok. Thinking of you.

Christine - hope you had some relaxing time off. I know about the fiscal stuff. Dh boss said he suddenly found some end of year money for dh, gheesh. 

Well I went to the pcp. She doesnt know why I am having trouble breathing and thinks also I pulled a rib muscle? She said go for a pulmonary function test. Asked for a mammo script for a few months down the road and she said I could skip the colonoscopy if I did the mail in test, hmm. 

And in the best news...ds3 and I just booked the Disney trip. We are going Sept. 19-25. Staying at the Swan but the last night at the Dolphin because they were sold out. So now we need to do dining and fast passes. I booked the town car but have to see if the wheelchair went through. There really is not that good dining times or places left. Ds said no France and that is my favorite place, gheesh. My cousin is there now and I dont know when he is coming back. His friends from England had their flight delayed until Saturday.  I hope its ok down there. I have a bittersweet feeling knowing others are pulling through this storm.


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## macraven

Hello ladies....and thank you for asking about me.
been busy doing nothing and trying to catch up here.

ok, at 4 months and 2 days from when the day i had the TKE, i felt really good that day!
first day that i was pain free and able to walk without a cane.

Mr Mac was visiting his parents out of state and due back home in 2 days.
Since i felt so much better, decided to clean the hardwood floor in the dining room.
(up to this point, he did all the housework for us)

i have an oak dining table with the pedestal and the 4 legs that come out from it.
was cleaning the space between them and moved my left foot into that hard wood 
pain was soaring in my foot.

watched it swell and turn blue over night.
went to ortho doc the next day, had xrays 
have 3 breaks 
#5 toe and side and top of foot.
he also xrayed the knee in case i hit the front of the knee when i fell down.
(knee is fine)

go back end of september for recheck and xrays again.
leave for orlando two days later.....

he told me 4-6 weeks and i should be fine with the foot and no more boot.
at this point, the foot aches and hope it improves soon.
if not, i rent a scooter for vacation.

i had not planned to tell Mr Mac i broke the foot as i wanted him to spend more time with his elderly parents.
ended up telling him and he drove 13 hours to get back home....


lmp, that is great news!
you'll hit F & W which is one of my favorite things to do
maybe your ds will change his mind and eat at France....
hope your rib pains cease soon and you get a break from your health issues...
enjoy your vacation later this month!

christine, hope all going fine for you.


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## SingingMom

*"I Survived Hurricane Irma"!*   My heart goes out to the people who truly have lost their homes & possessions.  It is heartbreaking.  But, thank the Lord, we didn't have any problems. 
Fortunately, DD's area just lost power from 2am to 7:30pm. One tree in her complex was uprooted. Lots of leaves.  But that really was it.  As we drove out the following day, we did see many trees down and standing water in areas.  Parks were closed Sunday and Monday and Disney paid the cast members who were scheduled, which was really nice for DD.  

The things I learned from Hurricane Irma:
1. *Floridians act MUCH calmer *when a deadly hurricane is about to descend on them than NY/NJ act when _*"a dusting to an inch"*_ of snow is forecasted.   I was shocked how orderly and pleasant the_ "milk & bread" run_ was at the supermarket! 

2. I will* NEVER* watch The Weather Channel or National Cable News during a storm again.  *The MASS HYSTERIA does NOT help people*.  I stopped communicating with certain family members out of the area because THEY were the reason I was getting nervous.  Mom called "THEY ARE EVACUATING ORLANDO!!!" I said, "People in MOBILE HOMES."   Fell on deaf ears.    A friend suggested two local news channels and two FB pages and I was eternally grateful.  That was where we got REAL NEWS and HELPFUL information.  

3. Everyone tells you to have a "Hurricane Kit" - batteries, flashlights, water, nonperishable foods, full tank of gas in the car, cash.  The most IMPORTANT item in *my* personal "Hurricane Kit" was a *BATTERY OPERATED FAN*.   *News Flash:  It is HOT IN FLORDIA.* *HOT HOT HOT*.  You sometimes do not realize *HOW hot* if you spend a lot of time inside.  When the electric goes off, *the AIR CONDITIONING goes off. * Wow. Just Wow.   

I'm glad I was there to keep DD company.  She slept until noon during the worst of the storm.  I put ear plugs in at one point to try to sleep a little.  DH woke me up with a text or else I would have probably slept until noon too.  We played cards the rest of the day and ate snacks until the electric came back on. 
The only real disappointment about the visit was they canceled our performance of "The King and I" at Dr. Phillips Center, which was my original reason for visiting this time.  

Food and Wine was nice - our friends were in town so we did it with them.  Some of my favorite items weren't there this year and the "Passholder Gift" was a cheap button, not a wine glass like past years - I don't need another glass- but DD liked having a little collection.  

When I get a chance, I'll update you on a few new restaurants we tried this time and my first stay at Coronado Springs.  

Stay well, all!


----------



## luvmarypoppins

sinigng mom - glad you survived the hurricane

Macraven - how is your foot?

Christine - hope you are enjoying the start of fall and doing well

Our trip was nice. Ds goes from day to night and I had him push me alot because I couldnt walk fast enough for him for sure. We like the Swan and the Dolphin was ok for one night. Didnt even have time to swim. Saw the pandora stuff. Ds went on the FOP himself. I had a hard time getting out of the river ride. 

Will update later. Ate at food and wine.

Please say some prayers for ds1 as his hip replacement surgery is tomm. Dh and ds3 will be with him tomm. and ds3 will be with him thurs. as dh has a very important meeting.


----------



## Christine

LMP, glad to hear you are doing well.  Sounds like your trip was okay?  What did you think of all the Pandora stuff?

Did Fall actually start?  It's been in the upper 80's/lower 90s for about 2 weeks now!  Still wearing those summer clothes to work and feeling funny about it (YES, I have a WHITE jacket on today!!!!).  Looks like it will break tomorrow and then get into the 70s.  Don't get me wrong, I'm fine for it to be as hot as it wants for as long as it wants.  I know what's coming when it stops....WINTER.


----------



## macraven

LMP 
How did your son's hip surgery go?


----------



## luvmarypoppins

Ds surgery went well. He came home the next night. He takes lots of pain meds and uses the walker. He needed to poop lol. 

A nurse came Sat. Ds3 helped her change the dressing. Today the physical therapist is coming.

Ds3 has been taking great care of him. Ds1 has been really moody but to be expected pain wise


----------



## andersonsc

I'm hoping someone can give me some advice.  My son is 18 and has been exhausted for 5+ years. He's passed 2 sleep studies.  Docs say labs fine except low vit D and high testosterone. I noticed on his labs though that TSH was 1.2 last year and 2.4 now.  No other thyroid tests done. The vit d meds are not helping his fatigue.  He started on antidepresssnts a couple of months ago.  He says he feels less depressed but just as tired with More brain fog and problems with memory.  

Could this be thyroid?  Do boys have hypothyroidism?  

I just wish we could find reason for his fatigue.  He's allergic to everything so did shots that didn't help.  He's had tonsils out and deviated septum fixed in case these things were affecting breathing at night.  Didnt help. 

I've read so many different things on what is considered normal TSH now.  He's doc just says he's depressed and upped his Prozac.  I don't think he's been depressed this whole time though.  Help!


----------



## SingingMom

andersonsc said:


> I'm hoping someone can give me some advice.  My son is 18 and has been exhausted for 5+ years. He's passed 2 sleep studies.  Docs say labs fine except low vit D and high testosterone. I noticed on his labs though that TSH was 1.2 last year and 2.4 now.  No other thyroid tests done. The vit d meds are not helping his fatigue.  He started on antidepresssnts a couple of months ago.  He says he feels less depressed but just as tired with More brain fog and problems with memory.
> 
> Could this be thyroid?  Do boys have hypothyroidism?
> 
> I just wish we could find reason for his fatigue.  He's allergic to everything so did shots that didn't help.  He's had tonsils out and deviated septum fixed in case these things were affecting breathing at night.  Didnt help.
> 
> I've read so many different things on what is considered normal TSH now.  He's doc just says he's depressed and upped his Prozac.  I don't think he's been depressed this whole time though.  Help!



Have you tried to get him an appointment with an endocrinologist?  A specialist sounds like a good choice at this point.  Good luck.  Hope you find answers!


----------



## Christine

andersonsc said:


> I'm hoping someone can give me some advice.  My son is 18 and has been exhausted for 5+ years. He's passed 2 sleep studies.  Docs say labs fine except low vit D and high testosterone. I noticed on his labs though that TSH was 1.2 last year and 2.4 now.  No other thyroid tests done. The vit d meds are not helping his fatigue.  He started on antidepresssnts a couple of months ago.  He says he feels less depressed but just as tired with More brain fog and problems with memory.
> 
> Could this be thyroid?  Do boys have hypothyroidism?
> 
> I just wish we could find reason for his fatigue.  He's allergic to everything so did shots that didn't help.  He's had tonsils out and deviated septum fixed in case these things were affecting breathing at night.  Didnt help.
> 
> I've read so many different things on what is considered normal TSH now.  He's doc just says he's depressed and upped his Prozac.  I don't think he's been depressed this whole time though.  Help!



Hey there.  My son is 22 and has many of the same issues.  In fact, he may be heading to a sleep study.  He feels he doesn't sleep well and that causes him a lot of drowsiness during the day.  He frequently needs naps.  He is allergic to everything out there and his allergies are also pretty intense. He's had a full ENT workup.  He does have asthma.

IMO, your son's TSH is pretty normal and a flucuation like that is also normal.  Let's just say that a 2.4 was abnormal (it's not though), I don't feel as if it would cause that sort of fatigue.

As singingmom recommended, it wouldn't hurt to seek the opinion of an endocrinologist, but I'm going to bet that much of his issues could stem from chronic allergies.  They are very taxing on the system when you have overwhelming ones.


----------



## luvmarypoppins

I might go for a blood test tomm. If Ds 1 is OK with being alone for a while. That will determine if the endo will adjust my synthroid.

Christine - do you know anything about Massey Cancer Center at VCU. One of my book Facebook friends has to go there today for a possible bone marrow  transplant eval for her leukemia. I think she lives in Glouster.


----------



## Christine

LMP, no I don't know anything about it; in fact never heard of it.  But VCU is south of me and some of the "better" cancer centers are in DC so, in my neck of the woods, we would travel to DC versus going south to VCU.


----------



## luvmarypoppins

Hi peeps
macraven - how is your foot healing?
Singing mom - what did you like at food and wine. I liked thee lobster roll and the ice cream at the almond place. The soup in  Canada was a joke portion wise.

Christine - the girl posted that she will need the bone marrow transplant. I dont know her well enough to say I wish she wouid go to a good place. Her life is depending on this!

Ds1 is doing well. He both his staples out and one was stuck. The nurse told us to go to urgent care. Dh came home after she left. Looked at her stapled remover, adjusted it with a wrench and proceeded to take out the last staple. It was twisted sigh but its out Now Ds is walking with a cane, took a shower in my bathroom because it has a walk in shower and might start out patient pt on Thurs.

Ds3 is taking me for the blood test tomm. And dh is off to Korea sat. Morning.

Check in when you can.


----------



## Louis Mason

we


macraven said:


> Hello ladies....and thank you for asking about me.
> been busy doing nothing and trying to catch up here.
> 
> ok, at 4 months and 2 days from when the day i had the TKE, i felt really good that day!
> first day that i was pain free and able to walk without a cane.
> 
> Mr Mac was visiting his parents out of state and due back home in 2 days.
> Since i felt so much better, decided to clean the hardwood floor in the dining room.
> (up to this point, he did all the housework for us)
> 
> i have an oak dining table with the pedestal and the 4 legs that come out from it.
> was cleaning the space between them and moved my left foot into that hard wood
> pain was soaring in my foot.
> 
> watched it swell and turn blue over night.
> went to ortho doc the next day, had xrays
> have 3 breaks
> #5 toe and side and top of foot.
> he also xrayed the knee in case i hit the front of the knee when i fell down.
> (knee is fine)
> 
> go back end of september for recheck and xrays again.
> leave for orlando two days later.....
> 
> he told me 4-6 weeks and i should be fine with the foot and no more boot.
> at this point, the foot aches and hope it improves soon.
> if not, i rent a scooter for vacation.
> 
> i had not planned to tell Mr Mac i broke the foot as i wanted him to spend more time with his elderly parents.
> ended up telling him and he drove 13 hours to get back home....
> 
> 
> lmp, that is great news!
> you'll hit F & W which is one of my favorite things to do
> maybe your ds will change his mind and eat at France....
> hope your rib pains cease soon and you get a break from your health issues...
> enjoy your vacation later this month!
> 
> christine, hope all going fine for you.


welcome back....


----------



## macraven

_Thank you_


----------



## luvmarypoppins

Interesting from Facebook - There is a Christian singer Natalie grant. She has over a million likes/followers. She posted that she had half her thyroid out. Will know next week if its cancer. Concerned for her voice. I don't know her music but always happy when thyroid stuff gets press.

This week is the American Thyroid Association conference in Vancouver. Dr who almost killed me has 1 paper.

My current surgeon Dr. P. has two papers and an oral presentation (more prestigious). At one time they told me I could access stuff from the univ. Health library. I will maybe check into it once it gets published. I will ask ds3.

Dh made it after about 30 hrs. He had a six hour layover in Japan.

Ds1 has pt tomm. He seems stiff and in pain today poor guy.


----------



## luvmarypoppins

Got the results of my blood test. My tsh is going down. It was 2.25 and now its 1.57 so I have to take an extra synthroid pill on sundays. Then I have to get another blood test in 2 months, yup never ending. sigh.

Dh is tired in Korea, Ds1 is doing well in pt. It will take a while I guess. Ds3 had to go walk a patients service dog at work - hmm didnt know that was in a nurses job assignments lol!

Need to tentatively look at a december trip. Dh hasnt had a real vacation all this year sigh,. He needs one for sure. 

The singer Natalie Grant posted that she did indeed have pap cancer.She loves her dr. (surgeon)

macraven - the dr. she mentions is at Vanderbilt and I know this is one place your were considering for your surgery. Seems like he is a good dr. 

Enjoy fall everyone!!


----------



## macraven

Thanks LMP 
I was informed it would be the docs in training that are doing the parathyroid gland surgery and supervised by the specialist at Vanderbilt 

Uh, no thanks don't want to have anyone in training that has not done at least 1000 of this type of surgery 
Too risky 

So I'm back to either Chicago or Tampa 

Hope your boys are doing well and you can start making plans for an Orlando vacation fair husband and you


----------



## luvmarypoppins

Happy November! We only had 19 trick or treater's. Last year it was 59. Go figure.

Planned our trip. Dec 14-20 at the Swan. I know dh will be working alot so I will people watch. Better than nothing. 
At least I won 't be eating counter service alot like I did with ds. 

We are eating at cape may, chefs, kona,brown derby and the CP package at Marrakesh to see Trace Atkins. Need to do the flights and our passes expire before the trip. 

Dh is in LA. Ds1 goes to the surgeon next week.

The left side of my jaw and mouth have been feeling weird. We shall see.

Check in when you can.


----------



## SingingMom

we had 4 trick or treaters - all at one time.  lol
Hubby had a big health scare recently - had been out of breath when climbing the stairs for a few weeks - no other symptoms.  Finally decided to go to our doctor - ended up in the hospital with two large pulmonary embolisms in the pulmonary arteries.  Vascular surgeon took a look at the CT scan and said, "This is usually fatal, so good thing you came in."     Great bedside manner.  Good thing I'm a tough cookie.  
Put a catherer up the groin directly into the embolism and used mega dosage clot busters plus sound waves - in ICU for three nights.  Tubes and machines all over the place.  Thank the good Lord we caught it in time.  He's feeling very well now.  Still no driving but he's working from home and I'm taking him to the office every few days.  Tomorrow starts all the followups.  Never a dull moment.

DD was already planned to come home for a visit, so luckily she was able to spend some time with us.  I was supposed to fly back with her to spend a week doing mom stuff, but I was able to get a refund on my plane ticket, change hers, and also get money back on two of our Broadway tickets - all with fees waived.  There still are good people in the world!


----------



## macraven

_We had a lot of trick/treaters!
quit counting after # 100 came to the door.

enjoyed seeing kids and kidlettes dressed up and having fun

Singing mom, wow!
glad it was a happy ending....he will listen to you from the start next time


lmp, you'll have a lot of fun at the Swan_


----------



## Haimia

Oh my, Singing Mom.  It is good your DH went to the doctor!  I had, what I thought, was a blood clot in my R ankle after having the vein striped on that leg.  Went to ER and found out I had blood clot there, in my R thigh and also in my lung!  I got to spend three days in the hospital and several months on blood thinners.  I ended up with an IVC filter after a hematoma with my thyroidectomy and it cannot be removed (tried and tore the vein!).  I am still on blood thinners because of the IVC filter.  Hoping your DH continues to do well after this health scare~!


----------



## Christine

Hello everyone!

Singing Mom--WOW, that sounds so scary.  Being the medical snoop/curious person that I am, did they even hazard a guess as to why this happened to your husband?  I mean, that's not just an everyday thing, right?  One of my high school friends on Facebook unexpectedly passed away on a beach vacation a few months ago and it was due to a pulmonary embolism.  I just wonder what might cause that.

LMP--your upcoming trip sounds nice and gives you something to look forward to!

Not much going on here at all.  No trips planned, nothing.  Just doing my thing: working, shopping, and trying not to eat everything in sight.  My son, who graduates college this coming May, got an amazing job offer.  Possibly he will have to work/live in Richmond, VA which is only an hour and a half from us, but not what he was expecting.  He has until 11/17 to decide.  I'll probably have the "kids" at home for a bit this weekend which will be nice.  

Cold weather is finally here.  A few days ago I was out exercising and it was 74 degrees; today, it *might* get to 40.  Brrrr.....


----------



## mrswillson

I'm so glad to see that I'm not the only one dealing with this awful disease!

I was diagnosed at 19 with Hashimoto's Thyroiditis and am 25 this year. The symptoms that took me to the doctor in the first place were chills, constantly feeling cold, the feeling of an adrenaline rush in my chest several times a day, hair loss, and heart palpitation. I was prescribed 50mg Levothyroxine and have been on the same dosage since.

Next month I am going back to the endocrinologist and hoping to undergo some more invasive testing as I have been feeling generally unwell on and off for the last year and a half despite my levels testing normal. The worst symptom that I have developed is horrible brain fog - I can't remember words (tip of your tongue feeling), plans or appointments I've made, and on bad days, feel like I can't mentally process anything. I have started to have horrible moodswings that I have been told is associated with a hormone imbalance, as well as found out my prolactin is high (that unless there is a pituitary gland tumor, is caused by Hashimoto's. I've ruled out tumors.) I have been diagonosed with idiopathic gastritis, which I have read can also be a by-product of Hashimoto's because it is autoimmune in nature, and I have also been dealing with potential interstitial cystitis which can be linked as well. Most recently I have started to develop neurological migraine symptoms - dizziness, feeling of standing on a boat, "brain zaps" - and have been wondering if these too could be linked.

I've done my best to eliminate gluten and dairy from my diet, as well as restrict soy. So far going gluten and dairy free has provided some limited relief from my GI and brain fog symptoms, but sadly it's hit or miss and not full proof.

At this point in time I'm wanting to see if anyone else has been having such extensive issues, or ask for advice on what other chances I can make myself, or avenues to pursue with specialists to try and start feeling normal again.


----------



## Christine

mrswillson said:


> I'm so glad to see that I'm not the only one dealing with this awful disease!
> 
> I was diagnosed at 19 with Hashimoto's Thyroiditis and am 25 this year. The symptoms that took me to the doctor in the first place were chills, constantly feeling cold, the feeling of an adrenaline rush in my chest several times a day, hair loss, and heart palpitation. I was prescribed 50mg Levothyroxine and have been on the same dosage since.
> 
> Next month I am going back to the endocrinologist and hoping to undergo some more invasive testing as I have been feeling generally unwell on and off for the last year and a half despite my levels testing normal. The worst symptom that I have developed is horrible brain fog - I can't remember words (tip of your tongue feeling), plans or appointments I've made, and on bad days, feel like I can't mentally process anything. I have started to have horrible moodswings that I have been told is associated with a hormone imbalance, as well as found out my prolactin is high (that unless there is a pituitary gland tumor, is caused by Hashimoto's. I've ruled out tumors.) I have been diagonosed with idiopathic gastritis, which I have read can also be a by-product of Hashimoto's because it is autoimmune in nature, and I have also been dealing with potential interstitial cystitis which can be linked as well. Most recently I have started to develop neurological migraine symptoms - dizziness, feeling of standing on a boat, "brain zaps" - and have been wondering if these too could be linked.
> 
> I've done my best to eliminate gluten and dairy from my diet, as well as restrict soy. So far going gluten and dairy free has provided some limited relief from my GI and brain fog symptoms, but sadly it's hit or miss and not full proof.
> 
> At this point in time I'm wanting to see if anyone else has been having such extensive issues, or ask for advice on what other chances I can make myself, or avenues to pursue with specialists to try and start feeling normal again.



Hi there!  Sorry you are feeling so unwell.  Unfortunately, even though this thread is titled "THYROID" we don't get a lot people in here who have Hashimoto's.  So if you don't get a response back on your issues, please don't feel we are unfriendly.  The most active posters on this thread seem to be thyroid cancer survivors and we really only know about that as well as problems from under/over medication.  Hopefully someone will chime in who has Hashimoto's experience.


----------



## mrswillson

Christine said:


> Hi there!  Sorry you are feeling so unwell.  Unfortunately, even though this thread is titled "THYROID" we don't get a lot people in here who have Hashimoto's.  So if you don't get a response back on your issues, please don't feel we are unfriendly.  The most active posters on this thread seem to be thyroid cancer survivors and we really only know about that as well as problems from under/over medication.  Hopefully someone will chime in who has Hashimoto's experience.




Oh! Well that comes as a surprise considering Hashimoto's is the most common cause of hypo/hyperactive thyroid disease, so hopefully I won't be an anomaly on the board. Thank you for the heads up.


----------



## macraven

_I have hashimoto for the past 30
years

Your symptoms sound similar to mine

I can't take Levothoraxin due to the inert materials in it so only take synthryoid

My levels have always flexuated so do lab work every 3 months_


----------



## SingingMom

Christine said:


> Hello everyone!
> 
> Singing Mom--WOW, that sounds so scary.  Being the medical snoop/curious person that I am, did they even hazard a guess as to why this happened to your husband?  I mean, that's not just an everyday thing, right?  One of my high school friends on Facebook unexpectedly passed away on a beach vacation a few months ago and it was due to a pulmonary embolism.  I just wonder what might cause that.
> 
> LMP--your upcoming trip sounds nice and gives you something to look forward to!
> 
> Not much going on here at all.  No trips planned, nothing.  Just doing my thing: working, shopping, and trying not to eat everything in sight.  My son, who graduates college this coming May, got an amazing job offer.  Possibly he will have to work/live in Richmond, VA which is only an hour and a half from us, but not what he was expecting.  He has until 11/17 to decide.  I'll probably have the "kids" at home for a bit this weekend which will be nice.
> 
> Cold weather is finally here.  A few days ago I was out exercising and it was 74 degrees; today, it *might* get to 40.  Brrrr.....



No idea what caused DH's pulmonary embolisms!  They did determine he has a few very small clots in his right leg - but the two in the pulmonary arteries were very large.  Will probably be on Xarelto for life.  We've been doing all the followup postop visits - The "no holds barred" vascular surgeon said best to stay on the blood thinner since, "one near fatal episode is enough"  This guy is a real prince.    If he says "fatal" one more time, I'm going to smack him.   
We did get the ok from all the doctors that he can fly - so we are going to Disney for Christmas to see DD.  Then we are going to Disneyland in February on the "Backstage Magic ABD". Just have to make sure he walks up and down the aisle a few times!    Oh - and the vascular surgeon told him no motorcycle racing or kick boxing.  Because.... a bleed could be FATAL.


----------



## Christine

SingingMom said:


> No idea what caused DH's pulmonary embolisms!  They did determine he has a few very small clots in his right leg - but the two in the pulmonary arteries were very large.  Will probably be on Xarelto for life.  We've been doing all the followup postop visits - The "no holds barred" vascular surgeon said best to stay on the blood thinner since, "one near fatal episode is enough"  This guy is a real prince.    If he says "fatal" one more time, I'm going to smack him.
> We did get the ok from all the doctors that he can fly - so we are going to Disney for Christmas to see DD.  Then we are going to Disneyland in February on the "Backstage Magic ABD". Just have to make sure he walks up and down the aisle a few times!    Oh - and the vascular surgeon told him no motorcycle racing or kick boxing.  Because.... a bleed could be FATAL.



Oh boy.  Well, I guess the doctor wants to make sure you're taking it seriously.  I was just wondering if your husband had been flying a lot recently or had had some sort of injury in the leg area that might explain it.  Well, maybe you can buy him some cool compression socks for Christmas!  They make them in fun patterns now. Glad to hear everything's okay!


----------



## SingingMom

Christine said:


> Oh boy.  Well, I guess the doctor wants to make sure you're taking it seriously.  I was just wondering if your husband had been flying a lot recently or had had some sort of injury in the leg area that might explain it.  Well, maybe you can buy him some cool compression socks for Christmas!  They make them in fun patterns now. Glad to hear everything's okay!


We flew to Spain in May, did LOTS of walking, then we flew to Florida July, and he flew to Detroit and Charlotte.  Those were all 2 hours or under, so the doctors don't think it was that.  Too long ago for the Spain trip to cause trouble now.  He has more bloodwork this week and then followups with cardiologist again.  Hopefully it was a onetime episode.  Too scary to think about what could have happened!!


----------



## luvmarypoppins

Info post before I forget - does anyone use levo from CVS pharmacy. I saw someone post on thy ca that her cvs changed the supplier and its not Mylin and now she is having horrible issues. 

MrsWilson - welcome. I can't comment about the hashi's but I am slowly learning thanks to my one ds gf who has it.

singing mom - that was so scary about your dh. I had the xarelto too and had issues at first with bleeding from everywhere. Even had an incident like 2 months after. Same with me, they dont know what caused it and said its very serious. Hope your dh is on the road to recovery. 

Christine - did your ds take the job offer?

macraven - how was food and wine for you? Hoping your foot is healed and you can get on with the parathyroid issues

The L side of my neck keeps pulling and bothering me. Its annoying. I am sure it must be scar itssue. Dont know about thanksgiving yet. Whoever is here gets food I guess lol. Ds1 has a gf now so maybe he will go there, who knows. 

Working on the rest of the vacation plans and now dh says oh I have a big project the week we go. I said well just fly down, check in and go I guess but he said he will stay. Yeah that translates into I will be on my phone all day and computer all night lol. Such is life. No good fast passes left. I really only wanted fop for dh. Nothing for ROL but I did get navi river one day. I want to change the time though. Renewed my annual pass and just have to get the mvmcp tickets. I did cash in my southwest points and I am going there for free one way, yay!

I will have a big announcement before the new year and I am sworn to secrecy but I am 

Thanksgiving blessings to all. After all I went through this year I sure have alot to be thankful for for sure!!


----------



## macraven

luvmarypoppins said:


> Info post before I forget - does anyone use levo from CVS pharmacy. I saw someone post on thy ca that her cvs changed the supplier and its not Mylin and now she is having horrible issues.
> 
> MrsWilson - welcome. I can't comment about the hashi's but I am slowly learning thanks to my one ds gf who has it.
> 
> singing mom - that was so scary about your dh. I had the xarelto too and had issues at first with bleeding from everywhere. Even had an incident like 2 months after. Same with me, they dont know what caused it and said its very serious. Hope your dh is on the road to recovery.
> 
> Christine - did your ds take the job offer?
> 
> macraven - how was food and wine for you? Hoping your foot is healed and you can get on with the parathyroid issues
> 
> The L side of my neck keeps pulling and bothering me. Its annoying. I am sure it must be scar itssue. Dont know about thanksgiving yet. Whoever is here gets food I guess lol. Ds1 has a gf now so maybe he will go there, who knows.
> 
> Working on the rest of the vacation plans and now dh says oh I have a big project the week we go. I said well just fly down, check in and go I guess but he said he will stay. Yeah that translates into I will be on my phone all day and computer all night lol. Such is life. No good fast passes left. I really only wanted fop for dh. Nothing for ROL but I did get navi river one day. I want to change the time though. Renewed my annual pass and just have to get the mvmcp tickets. I did cash in my southwest points and I am going there for free one way, yay!
> 
> *I will have a big announcement before the new year and I am sworn to secrecy but I am*
> 
> Thanksgiving blessings to all. After all I went through this year I sure have alot to be thankful for for sure!!



someone having a baby.......?
win the lotto.......?

lol


----------



## macraven

lmp, foot seems good, knee still an issue at times but ortho said it could take one year for all to be better.
6.5 months into healing and on schedule.
so that part of me is doing fine.

had CT of neck and ultrasound of thyroid and parathyroid yesterday.
the nuclear test for sestamibi scan is monday

Tuesday i have to pick up the tests on discs and readings on the 3 tests and send to the surgeon in chicago.

Had a trip planned for late january for seeing Mickey but cancelled it out.
Will reschedule for May when weather is better.
I always fly down but halfway thinking i will do the 8 hour drive as won't be an issue for the knee anymore.

Earlier this year I drove down but flew the second trip for this year.

Hope all is going fine for everyone here.
Wish good weather for all for Thanksgiving day!


----------



## Christine

Hey LMP, can't wait for your announcement!  I've got a few things running through my head....

My son ended up with three very good job offers.  It was a tough choice because each one had pros and cons and not one of them was decidedly better than the other.  He ended up going with Capital One and has a very good chance of having to relocate to Richmond, but he could end up being in the DC area also.  His money will go much farther in Richmond, but he wants to be in the DC area.  It was hard because the other two jobs were in the defense/intel and/or accounting industry and those would come with security clearances.  Since that industry is "home" to me, it was hard to think outside the box and give him good, objective advice, but he's hoping that going with a true private industry/Fortune 500 might be a good thing long term for him and let him do things he wouldn't get to do in government consulting.  He's still feeling like maybe he didn't do the right thing but I guess time will tell.

So CVS is no longer carrying Mylan generic?  Wonder who they are using now?  Two years ago when my beloved Levoxyl was pulled from the shelf, I was having a tough time feeling well on anything so I was trying to find a generic Levothyroxine that mimicked Levoxyl in fillers.  It was pretty hard to do and I was finding the Mylan generic everywhere, which I think is actually pretty close to being like Synthroid.  I ended up getting my generic at Costco (made my Sandoz).  It made me pretty hyper at the same dose so I ended up back on Synthroid for a year.  Levoxyl came back out and I am back on that.  It is a brand name that costs the same as the generic and I feel it gives me the smoothest ride of all.  My TSH doesn't change very much on it from Synthroid--just a tiny bit (goes up a tad), but I don't get these odd feelings on it, almost like an adrenaline rush.  It seems to have less fillers and for someone like me that seems to have reactions to lots of things, that's important.

No big plans here for Thanksgiving.  Just dinner with my parents who live close by.  I'm just happy to have the time off of work.  No vacation plans either; I just don't have it in me to plan.  Air travel and Disney and all its planning requirements now have pretty much taken the joy out of it for me, although I will go back one day!


----------



## sunb75

Hello friends! I just happened upon this thread while doing a search for February weather  

My son (18) was born hypothyroid and was on Synthroid for his first five years. At five, his doctor decided to take him off the medicine and see if his thyroid was working properly. A few blood tests later, the doctor claimed him "cured". Fast forward about 10 years and he started having many hypothyroid symptoms, which also happen to be the some of the same "symptoms" of being a teenager. I asked several doctors about it, had labs done and they were all normal, but my son wasn't. A doctor finally talked us into trying anti-depressants. In the last three years, he's been on several, seen therapists, and has struggled so much! Finally, a couple months ago we went to a nurse practitioner who tested his thyroid again, along with his testosterone. TSH and other thyroid levels were "normal", but his testosterone was extremely low. APN refers us to endocronologist, but we couldn't get in for months so I contacted another APN who specializes in "men's health". She ran more tests and was so thorough with him. She noticed a "swollen thyroid" (she thinks it's more, but we are still waiting for a scan) and finally his labs showed an elevated TSH. So, she started him on levathyroxine. 

I have searched and searched and called and called and he finally has an appointment in December with an endo. He has another appointment in March with an endo that is supposed to be the best in the area. 

My son is depressed, has no motivation, but wants to do well, brain fog (NO memory), no energy, insomnia, and is not himself most of the time. He cries and cries because he is unwell. I recently started him on Vitamin D, even though his levels were in the normal range, a thyroid natural supplement, and a quality fish oil. If anyone has any advice, I am looking for anything to help. Thank you


----------



## Christine

sunb75:  So sorry to hear about your son.  I'm sure it's very frustrating and heartbreaking to see your child feel so down.

I'm glad you are going to see an endocrinologist.  Hopefully a good one will be able to really give you thorough information about the thyroid.  My personal thoughts are that if you have the TSH levels in optimal range (1.0-2.0) and the Free T4 and T3 are also in optimal range, then you need to move on to another cause.  Many of us here have struggled with thyroid levels.  In the past, the way thyroid cancer was treated, many of us had to go severely hypothyroid to get treatment.  I know everyone is different, but I believe it takes substantial hypothyroidism to cause some of the systems your son is having.  Certainly more than even being on the "edge" of normal. 

I am a person who doesn't take the diagnosis of depression lightly because I believe doctors are too quick to throw a pill at you and move on rather than try to investigate what is going on in the body to cause this.  From what you write, it certainly sounds as if your son has something "not right" going on within his body but based on all his tests, I'm not thinking that this is a thyroid issue but you were right to investigate it (and continue to do so).  I think an endocrinologist is a good start.  Please keep us posted here on what the outcome of your visit is.  Honestly, there are so many physical issues that could cause this.  My coworkers 6 year old grandson had many of the symptoms you describe of your son (listless, no motivation, depression) and it turns out he had Lyme Disease even though they can never recall a tick bite.  There has been so much improvement with the treatment for him.


----------



## sunb75

Christine said:


> sunb75:  So sorry to hear about your son.  I'm sure it's very frustrating and heartbreaking to see your child feel so down.
> 
> I'm glad you are going to see an endocrinologist.  Hopefully a good one will be able to really give you thorough information about the thyroid.  My personal thoughts are that if you have the TSH levels in optimal range (1.0-2.0) and the Free T4 and T3 are also in optimal range, then you need to move on to another cause.  Many of us here have struggled with thyroid levels.  In the past, the way thyroid cancer was treated, many of us had to go severely hypothyroid to get treatment.  I know everyone is different, but I believe it takes substantial hypothyroidism to cause some of the systems your son is having.  Certainly more than even being on the "edge" of normal.
> 
> I am a person who doesn't take the diagnosis of depression lightly because I believe doctors are too quick to throw a pill at you and move on rather than try to investigate what is going on in the body to cause this.  From what you write, it certainly sounds as if your son has something "not right" going on within his body but based on all his tests, I'm not thinking that this is a thyroid issue but you were right to investigate it (and continue to do so).  I think an endocrinologist is a good start.  Please keep us posted here on what the outcome of your visit is.  Honestly, there are so many physical issues that could cause this.  My coworkers 6 year old grandson had many of the symptoms you describe of your son (listless, no motivation, depression) and it turns out he had Lyme Disease even though they can never recall a tick bite.  There has been so much improvement with the treatment for him.



Thank you for your response. Is there something that makes you think this is not thyroid? Any ideas as to what it could be, new avenues to explore? I'm seriously so lost and not sure where to turn. You are right, doctors simply want to medicate, medicate, medicate and not get to the root of the problem. Could it 'simply' be depression and anxiety? Possibly. 

TSH is not optimal and has been between 3 and 7 the last couple of years. About a year ago, it was 4.54 and I requested a referral to an endocrinologist and was denied. Needless to say, we didn't go back to that doctor.


----------



## Christine

sunb75 said:


> Thank you for your response. Is there something that makes you think this is not thyroid? Any ideas as to what it could be, new avenues to explore? I'm seriously so lost and not sure where to turn. You are right, doctors simply want to medicate, medicate, medicate and not get to the root of the problem. Could it 'simply' be depression and anxiety? Possibly.
> 
> TSH is not optimal and has been between 3 and 7 the last couple of years. About a year ago, it was 4.54 and I requested a referral to an endocrinologist and was denied. Needless to say, we didn't go back to that doctor.



Okay, I think I misunderstood your first post where you described him being tested and you were told it was normal all those times and then there was one time that it wasn't.  Then you state that he was put on levothyroxine by the one nurse, so I am assuming that his levels are now good with the medication yet he still has symptoms.

Soooo...if his levels are still high, then I agree that you need to do more with the thyroid.  If his levels are treated then you will have to move on to something else.  Guess I'm not clear on exactly what his TSH is after treatment from the one nurse who put him on levothyroxine.


----------



## sunb75

Christine said:


> Okay, I think I misunderstood your first post where you described him being tested and you were told it was normal all those times and then there was one time that it wasn't.  Then you state that he was put on levothyroxine by the one nurse, so I am assuming that his levels are now good with the medication yet he still has symptoms.
> 
> Soooo...if his levels are still high, then I agree that you need to do more with the thyroid.  If his levels are treated then you will have to move on to something else.  Guess I'm not clear on exactly what his TSH is after treatment from the one nurse who put him on levothyroxine.



Sorry for not being more clear. Over the years he has had many labs on his thyroid. I was told his levels were 'normal' when they were on the high end of 'normal'. Even then, I requested an appointment with an endocrinologist due to his thyroid levels at birth and symptoms. 

Just recently, about 2 weeks ago, he started levothyroxine. He has not been tested again yet. There has been no change  in symptoms, and I don't expect there to be for several weeks or months based on what I've read and heard.


----------



## Christine

sunb75 said:


> Sorry for not being more clear. Over the years he has had many labs on his thyroid. I was told his levels were 'normal' when they were on the high end of 'normal'. Even then, I requested an appointment with an endocrinologist due to his thyroid levels at birth and symptoms.
> 
> Just recently, about 2 weeks ago, he started levothyroxine. He has not been tested again yet. There has been no change  in symptoms, and I don't expect there to be for several weeks or months based on what I've read and heard.



Ah, okay, good to know.  Depending on how hypothyroid he is and what dose they gave him, the Levothyroxine can actually show some improvements fairly quickly.  It takes a total of 6-8 weeks to reach equilibrium with one dose.  If you're not very hypo, it's probably much quicker.  

Are you forced to get a referral for an endocrinologist based on your health insurance?


----------



## sunb75

Christine said:


> Ah, okay, good to know.  Depending on how hypothyroid he is and what dose they gave him, the Levothyroxine can actually show some improvements fairly quickly.  It takes a total of 6-8 weeks to reach equilibrium with one dose.  If you're not very hypo, it's probably much quicker.
> 
> Are you forced to get a referral for an endocrinologist based on your health insurance?



Yes and the doctors. I even asked if I self payed if we could have an appointment, I was told by several offices that the doctors only see patients with a referral. I'm extremely disappointed in today's "healthcare."


----------



## Christine

I hear ya!  It's a struggle.


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## luvmarypoppins

sunb75- hope your son can get some answers to his health issues. Wishing him all the best.

Well the one announcement I thought would be good turned into a giant mess. Dh was first suppose to go to Virginia weekly and then they talked about him doing work there so we would move there and just rent some place. Now Virginia decided they want to do everything themselves, gheesh. So that is now off the table. They laid off 65 people where dh works and alot from his old department. He left that place when I first got cancer so it was good. He had a horrible boss who was going to make him go to Russia alot so God worked it all out for the good for sure. 

A week from Thurs. we will be in Disney. This week I will make the town car and wheelchair reservations. Still need the MVMCP tickets. I was watching the weather first. Its on a sunday so it could sell out. I hope not. 

I have a bad infection in two of my teeth. Went to the dentist and the same endodontist dh went to. This guy is gong to Fl this week and I told him I am gong next week, so I doubt anything will happen. He gave me an antibiotic. I think this will get accomplished toward the new year. My tooth hurts on and off. Going to bring aleve, tylenol and some tooth gel with me. Dh had ambesol but I had something from walmart that worked and tasted much better. 

Hope everyone is doing well. Check in when you can, oh and the next separate post will be the big announcement!!!!!!! It deserves its own post!!!


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## luvmarypoppins

The Big Announcement!!!!!
There are just not enough smilies for this,,,

Ds2 got engaged yesterday!!!  He told us a few weeks ago and told us not to tell anyone, even his brothers. He showed us the ring. He said it cost less than a car lol. He took her to the city yesterday. She already said she never wanted to get engaged at the Rockefeller Center tree. So ds hired a professional photographer and he proposed at the fountain at Lincoln Center. He posted a few pictures and one was them kissing with the radio city sign in the background and the tree from there. Magical! and so New York of course!!

They are talking about a fall wedding but they will have to see what places are available. They like gardens and the beach. They want a small wedding party, just her two sisters and a friend, our two boys and her brother in law. 

Next year will be very busy around here for sure. I really cant do much physically and her parents are like 10 years older than dh and I and the mom is not well either, so maybe her one sister can help. She also is not well. It will be interesting.

Oh and to keep things interesting. She has hashimotos and is gluten free too!!! Yay for a girl in the family and her name is my grandmas name and my sisters middle name.


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## Christine

LMP:  Congrats to your son!! You sound very happy about it.  Sounds like wonderful news!

Sorry to hear you won't be coming to Virginia!  I thought maybe we could do a meetup if you did!

My son found out he will be working in McLean, VA when he starts work in the summer (after graduation).  We thought it would probably be Richmond, but he got his choice of McLean.  Not sure how I feel about that.  I think his money and quality of life would have gone a lot farther in Richmond, but he wanted to be in this area.   So, it's expensive and lots of traffic.  

Not much else to report.  All is very boring!


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## macraven

_LMP, congrats for your son’s engagement 

Christine I had the same situation when my son moved to VA for his job
He moved opposite of what we thought would be better

After two years of him living there, he agreed with us

Hope all are doing fine 
Everyone have their Christmas plans made?_


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## SingingMom

Congratulations on your son's engagement!  So exciting!

DH has been keeping me busy with his hospital follow ups - so far everything has been good.  Today he had an echocardiogram to check if the strain on the right ventricle has reversed after the pulmonary embolisms.  It still amazes me how blessed we are that we got him to the doctor in time.  

My yearly endo appointment was good - she says after no recurrence in 25 years, I'm good to go.  lol   Keeping me on same synthroid dosage but she wasn't happy with my blood pressure. Told me to follow up with my primary, who decided to increase one of my meds.  Never a dull moment!

Off to Disney for Christmas to spend it with our CM DD.  She's working most of the holidays, but we'll be there to take her to breakfast or dinner before or after work.  DH is returning after 7 nights - I'm staying an additional week.  We'll be at POFQ during his stay, then I'll stay at her apartment until my final two nights - where we'll stay at Coronado Springs so I can use Magical Express.  Decided not to rent a car this trip.  

Still deciding about putting up the Christmas tree this year, since we won't be home.  I've done some "decorating-lite", not my usual all out theming.  Just too tired this year.  I'm also skipping my baking this year.  I need a break!  

My parents are turning 80 (Dad this month & Mom next November.)  DH & I decided to take them on a Disney Cruise from NY to Bermuda this coming October.  I really don't have it in me to put on another massive party (I'm the one that usually runs everything) and thought this might be a better way to spend the money.  Since they have some health issues, it will be better if we are along to keep an eye on things. We told them this weekend and they were shocked and thrilled.  Hopefully everyone will stay well and we can enjoy this trip with them!


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## luvmarypoppins

singingmom - glad for your dh good reports and hope you have a great time in disney over the holidays with your dh and dd.

It was crazy busy when we were there. I had to balance doing alot with dh wanting to not do too much lol. We did the best we could as dh usually doesnt get going till at least 11 am and more like noon. This would always frustrate the ds to no end when they were with us. Sometimes I would just go with them to the park growing up.

Anyways dh was not impressed with the navi river ride. He loved his crab legs at cape may and he said his best meal was at Kona Cafe. I liked Marrakesh the best. The candlelight processional was good as always. Loved hearing Trace Atkins. We also did the MVMCP. We sure ate alot of snacks that they had. 4 types of cookies, chocolates, sparkling cider, eggnog (yuck!), sparkling cider, and snow cones/balls and snowman soft pretzels. We also did the refillable popcorn bucket. Worst meal was at Skippers Canteen.

Had some issues at the hotel mainly with housekeeping. We also got one persons suitcase that was not ours, Had to wait 6 hours for toilet paper and dh finally got some when the manager brought it to the room, the hotel manager!! gheesh! The weather was really nice. One day almost 80. Our room was on the 2nd floor. The view was ok but it was a pain to get on the elevators at busy times. You had to wait a while. I walked as much as I could. Hurt my back one night. Really more of the sciatic nerve I think. I loved the decorations and the music. 

Oh and while we were away ds1 put a bid in on a house. We kept telling him it was too much money. W kept asking him questions and all he could say was I dont know or I didn't ask this. Gosh I hope he does not get this house. He just doesnt think or ask the right questions, like when was the roof replaced, when was the cesspool pumped last, how old is the oil burner etc. We told him this is the most important financial decision of your life so be very sure etc. Also when was it painted last? The list in my mind never ends. His list has not even started. 

Today is our future dil b day. I sent her a text and said love my name, mom  last initial or whatever you want to call me etc. She texted back and said I am so glad to be part of this family, love you mom, how sweet!!

Well my tooth infection is healed I think, so next is the root canals, then I need a flu shot, mammo and blood tests for tsh and tg. I dont know why the endo is testing for tg when she knows mine shows undetectable and the cancer was still there. Any ideas oh thyroid peeps??

I also just started opening all the collected mail. Read one christmas card from my cousin and his wife wrote that he has prostate cancer like his dad did and also he had to have his bladder radically removed and is not out of the woods yet she said. Doesnt sound too great. He really doesnt speak to any of the other cousins. I am just thankful he sends a christmas card. 

Wishing you all a joyous holiday season. Check in when you can.


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## macraven

Sounds like a lot happening in your house LMP
Fantastic you are gaining a daughter!

Haven’t done anything for Christmas yet and not much time left until it is here

Cancelled my December 12 surgery as I could not get all the tests done and faxed to the surgeon
Rescheduled it for January 9

Dreading it as winter weather is always so unpredictable for travel

Hope all here have a glorious Christmas and time with their families and loved ones


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## Christine

Greetings everyone and hope you all are ready for the holidays!  I just got home from work and will be off through Wednesday!  Now I need to get my house in order.  Nothing big going on here--my parents will come for dinner (making a lot of the food) and we have a brunch planned for the morning of Christmas Eve for my son's birthday, which was yesterday.

LMP--not sure why your endo keeps testing Tg, but I guess it's just to cover all the bases just to be sure it doesn't start acting up.

Re:  the bladder stuff.  My coworker's husband was diagnosed with bladder cancer a few months ago.  It's an aggressive form so they it's likely that they will be removing his bladder in January.  They are trying some immunotherapy within the bladder first to make sure they can kill off most of it prior to the surgery.  There is an issue that it may be working it's way to the kidney.

Hope everyone has a wonderful holiday and stay healthy!


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## luvmarypoppins

Well I have the christmas crud that is going around here. Even my future dil and family have it too. Ds1 seems to sound the worst right now. I am taking mucinex and coricidin hbp. It doesnt help that the temp is like 13 either. 

Well another christmas card and another friend who's husband is having surgery today. sigh.

Also ds2 informed us that they are getting married the last sun in august. I said what, what happened to the fall. He said we dont want to wait. Then I realized my favorite cousin wont be here because he is going on a disney cruise, more sigh. Wait till he hears that because I told him it would be in the fall.

They are paying for the wedding themselves and her mom is buying her dress. She wants a memrmaid style, the one I dont care for. oh well. She is having a black and white wedding so she said she is ok with me wearing navy blue. Or I could look at something black I guess. 

The wedding is around noon. It starts with a little snack at 11;30 and it goes until 5:30 I think,. It is a beautifful place with gardens and has its own river, lake and fountain along with peacocks lol. Its not in our county so the drive will be a ways for us. I am sure it will all work out no matter what.

I resubmitted my handicapped parking application so hopefully it will be approved this time. 

Happy 2018 to everyone here!!


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## Christine

LMP, hope you feel better soon.  I've been trying to just avoid people so I don't catch anything!!!  So far, so good.  Although I did go out for breakfast this morning to the Cracker Barrel(it's my birthday today, of which I'd like to forget).  

I have to agree with you on the mermaid style wedding dress.  I've never liked that style at all, but I guess there's something for everyone!  I do like a black and white wedding though, it's usually very elegant.  

Again, feel better soon and Happy New Year!


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## macraven

_Christine_


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## luvmarypoppins

Happy Birthday Christine!


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## luvmarypoppins

Macraven - wishing you all the best with your upcoming surgery. My thoughts and prayers are with you. When will you be heading to Chicago?


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## macraven

early next week i fly out


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## luvmarypoppins

Macraven - wishing you all the best for a successful surgery tomm. Update us when you feel up to it. Hugs and prayers.


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## bluejasmine

Hi y'all I am so excited to see this thread, diagnosed hypo in 2013, 2 months ago diagnosed Hoshimotos plus they found 3 nodgles that Dr did we really have to watch. In top of that I have extremely bad gerds, my body isn't make cortisol and I'm insulin resistant but not diabetic, I have allergies and asthma, I work in an old building and it literly makes me sick, oh and Im anemic..
I'm on cytomel and synthroid,meprigane,cortissone and nexium, xyzal, singular an inhalers.. Yep Im a mess.
So far Ive had no results from any of my thyroid meds and I hate the cortisone as its a steroid and Im gaining weight, I went from a 8 to a 16, so Im very unhappy, Im short so plus size clothes hard to fit right...When I ask dr to take me off the steroids his answer is its too dangerous my blood pressure would drop if I get really sick...
We have a trip planned, I want to loose weight but I dont want to diet, I want to make some better choices and walk, I need to walk to build up to our trip in Sept.
I lost a son in 2016, my mother is in hospice and all the stress Im sure doesnt help, my husband and I dont have a day off together which is very hard as we are joined at the hip, lol

Anyway thats my story... Now Im going to read through this thread


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## SingingMom

Happy New Year to all!  We had a great visit with DD over the holidays, but Florida was only warm for about 4 days of my two and half weeks!! Still - it was great to be with DD and spend time with both the three of us, then just me & my girl.   Parks were very crowded most of the time.  Since I go so often, the crowds just make me stay away.  I'm so spoiled that I wont wait in a line longer than 15 minutes now.  LOL

We had a lovely lunch at Chefs de France and then had special seating for the 5:30 Candlelight Processional.  I  just adore that program.  SO beautiful and moving.  DD and I even sat through it another evening after DH had returned home.  We had some terrific meals this trip - and probably spent way too much money.  But, it was a really nice time.  Christmas Eve we had dinner at Paddlefish.  Food was great - our seats weren't the best, but they did seat us a lot earlier than our original reservation, so I can't complain.  Christmas night we had dinner at Brown Derby. Again - very good meal.  DD and I had Afternoon Tea at the Grand Floridian.   We also ate at Citricos, Kona Café, Tutto Gusto, and California Grill.  We tried Maya Grill at Coronado Springs our last night and it was terrific.  Service was excellent and the red snapper was delicious!  I packed away DD's Christmas decorations in new storage bins and made her an official "hurricane kit" to leave in the closet.  I cleaned, cooked, & shopped.  I get more done at her apartment than in my own home!

Spoiled rotten me is going back next Friday - DD wants me to go to the Festival of Arts Broadway concert with Kara Lindsey and Kevin Massey.  They are husband and wife team who we've had the pleasure of meeting on numerous occasions.  Kara starred in Newsies, was Glinda in Wicked, and in Beautiful.  Kevin was Tarzan in Germany and was in Memphis and Gentleman's Guide to Love & Murder.  They met in an production of Aladdin.  Excited to see them perform together.   I'll make it a mom trip by getting DD's car oil changed and cook some meals for her to freeze.


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## Christine

bluejasmine said:


> Hi y'all I am so excited to see this thread, diagnosed hypo in 2013, 2 months ago diagnosed Hoshimotos plus they found 3 nodgles that Dr did we really have to watch. In top of that I have extremely bad gerds, my body isn't make cortisol and I'm insulin resistant but not diabetic, I have allergies and asthma, I work in an old building and it literly makes me sick, oh and Im anemic..
> I'm on cytomel and synthroid,meprigane,cortissone and nexium, xyzal, singular an inhalers.. Yep Im a mess.
> So far Ive had no results from any of my thyroid meds and I hate the cortisone as its a steroid and Im gaining weight, I went from a 8 to a 16, so Im very unhappy, Im short so plus size clothes hard to fit right...When I ask dr to take me off the steroids his answer is its too dangerous my blood pressure would drop if I get really sick...
> We have a trip planned, I want to loose weight but I dont want to diet, I want to make some better choices and walk, I need to walk to build up to our trip in Sept.
> I lost a son in 2016, my mother is in hospice and all the stress Im sure doesnt help, my husband and I dont have a day off together which is very hard as we are joined at the hip, lol
> 
> Anyway thats my story... Now Im going to read through this thread



Wow, sounds as if you have a lot going on.  

So for your thyroid meds, you've seen no change in the lab numbers at all?  Or do you just not feel any different?


----------



## bluejasmine

Christine said:


> Wow, sounds as if you have a lot going on.
> 
> So for your thyroid meds, you've seen no change in the lab numbers at all?  Or do you just not feel any different?


I haven't gotten the results back but I feel no different and I still have bags and dark circles under my eyes


----------



## Christine

Good morning everyone, just checking in after a long while.  Hope everyone is doing well.  I haven't been up to much.  Just trying to avoid the noise so I don't freak out about the flu epidemic (it's not working!!).

Now that the holidays are over, I'm back to work and it was tough going in for 5 straight days.  At least I had a three day weekend this week and am hoping for a snow/telework day on Wednesday.

SingingMom, your trip sounds great.  One of my coworkers went over the holidays.  I think the week before Christmas he got a day or two in the upper 80s, but after that, the heat wave was over as it was for most of the East Coast.  It has been colder than I remember for such a long period of time.  I think I would have been bummed had a been in Florida (well, just a little bit anyway).  If I went in the winter, I'd definitely be seeking some heat.  The crowds would definitely have gotten to me.  I'm tentatively looking at an early to mid-May trip.  My son graduates college then and he doesn't start his job until August so it will be the first time that we can go when the "masses" aren't there.  But it all depends on if he finds a summer job.

Macraven, hope you are doing okay and your surgery went well.

Everyone, keep healthy!!


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## Christine

bluejasmine said:


> I haven't gotten the results back but I feel no different and I still have bags and dark circles under my eyes



I think with all of the other stuff you have going on, especially with the steriods, it may be hard to "feel" any thyroid improvements if that makes sense?


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## Pacesetter

sorry - wrong thread.


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## bababear_50

Hi Thyroid Thread friends.
I have a question for you.
History 
Hyperthyroidism Dx--ultrasound showed multiple nodules growing on the thyroid ---Sept 2002
Treated with Radioactive Iodine--no longer have a thyroid
I have been taking synthroid 100 mcg since RAI 2002

In April 2017 my blood work showed Hypothyroidism.
Doctor changed meds to 125 mcg Synthroid

Now my blood work as of last week is showing Hyperthyroidism,,,,BUT
I actually feel better than I've felt is a long time.
We agreed to wait till first week of April and recheck blood THS
She said we may need to do 125 mcg week days and 100 mcg weekend? Has anyone ever done this?
My memories of Hyperthyroidism just don't match what I am feeling right now.
Any thoughts or ideas ,discussion welcome.
Thanks and 
Hugs Mel


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## macraven

Welcome!


All I can say is my endo has had me alternate two different doses 

Went that route for 3 months before I went on one dosage level for ongoing


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## bababear_50

macraven said:


> Welcome!
> 
> 
> All I can say is my endo has had me alternate two different doses
> 
> Went that route for 3 months before I went on one dosage level for ongoing



Hi Hon
Thanks for responding, I will give it a go for a few weeks and if I start to get too many problems I head back in to see her and request we start the alternating doses early.
I am most worried about getting muscle weakness (bad memories of this from years ago) and dry skin--already have psoriasis and two types of eczema which is hard enough to treat in this darn Canadian weather we are having. 
I understand from previous posts that you are recovering from surgery and I hope all is well.
Again thanks for taking the time to help and the welcome.
Best Regards
Mel


----------



## dosekies

I'm getting a blood test done this weekend to check for hypothyroidism. Among other things, I have been ridiculously exhausted for the past year or so no matter how much sleep or caffeine I get and have gained a lot of weight over the last few years - 15 pounds even in just the last year even though I'm eating better and walking more. I in no way, shape, or form want to say I hope I have it, but I hope I get some answers at least!


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## bababear_50

dosekies said:


> I'm getting a blood test done this weekend to check for hypothyroidism. Among other things, I have been ridiculously exhausted for the past year or so no matter how much sleep or caffeine I get and have gained a lot of weight over the last few years - 15 pounds even in just the last year even though I'm eating better and walking more. I in no way, shape, or form want to say I hope I have it, but I hope I get some answers at least!



Hi Hon
I agree--not knowing can drive a person crazy.
I gained weight and should have put two and two together but I was dealing with the loss of my brother and a back injury at the time. It wasn't until my hair started to fall out in clumps that I freaked and made a quick appointment.I think I am going to have to talk to my doc about more frequent blood work. 
I hope you get some answers soon and best wishes to you.
Hugs Mel


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## Christine

I take a mixed dose of meds. No problem and it's often done.

bababear, your labs may show as slight hyperthyroid but yet you feel good.  That's perfectly fine to stay that way as long as you feel well.  Most of us thyroid cancer patients are kept slight hyper.  Just keep watching it and make sure it doesn't go too far in that direction and you should be good to go.

To dosekies:  During my thyroid cancer treatment many years ago, I was *significantly* hypothyroid for many weeks. I'm talking a TSH of 145.  I did not feel like I needed to sleep all the time or was overly tired.  My weight gain didn't amount to my and according to any endocrinologist I've gone to, hypothyroidism will, at most, cause a 5% weight gain.  

What did make me awfully tired was being low on iron (not anemic, but low iron).  This can be measured through a ferritin test.  My gosh, I couldn't do anything.  Exhausted by 9AM in the morning, lack of ambition/drive.  Once I took an iron supplement I was much better.  Once I stopped having periods and went into menopause I was TONS better.


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## luvmarypoppins

macraven said:


> Welcome!
> 
> 
> All I can say is my endo has had me alternate two different doses
> 
> Went that route for 3 months before I went on one dosage level for ongoing



macraven - glad to see you posting. How are you feeling?


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## luvmarypoppins

bababear - welcome. I don't take multiple diffferet doses but my endo has me taking an extra pill on sundays for now. That will change I am sure after my next blood test as I feel like crap.

doeskies - wishing you all the best with the blood tests and hope you get some answers for your health issues

Christine - did you enjoy the short lived almost furlough. We will see what the next couple of weeks bring. Dh just found out they got rid of another guy from his old dept. A really smart guy gheesh. 

And in my little world. I am behind on the blood tests so I actually skipped one due to being sick and dh work commitments. So in 2 weeks I will have the blood tests or maybe sooner for that and the sonogram. I also never got the flu shot or the pulmonary function test. Yup I am batting 100 these days and I am cancelling the appt. with the surgeon in NYC. Its a stressful trip there with dh driving for the surgeon to spend 5 minutes with me. He said it would be the last visit with him. If he wants to do some research or something I will just send him a picture of the scar what else would he want. He wouldnt scope me or anything. My neck has been bothering me a little but we will see. A sono picture speaks a thousand words lol. 

At church yest the pastor told us not to hug, shake hands with anyone etc due to the bugs going around. I was never so happy in my life. Last week I think some guy was miffed because I wouldnt shake his hand. Its going around here like crazy, so many sick.

Ds1 and DS2 and future dil have all been looking at houses. No luck so far. 

And in wedding planning news. Hmm, I told my cousin when the wedding was. Yup he will be on the disney cruise. The pastor cant marry them because he will be on vacation, they are asking one of ds1 friends. He is really a cop but went to Liberty to be a pastor and is ordained. We shall see. Oh and future dil went wedding dress shopping with her sister. Her mom didnt go. She showed me a picture on her phone. It was not a mermaid dress but I guess she will pick out something she likes. I dont know what wedding etiquette stuff is these days. I will be happy to show up at her bridal shower and then the wedding. I am looking online at dresses. Its not fun. I wear a big size. A few look interesting. I want something with a jacket or sleeves because I am sure the place will have ac and I will be cold. Also some have lower backs and I already have more scars there from my back surgeries so its like cover up everything lol. 

I am loving the handicapped parking permit!!


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## Christine

luvmarypoppins said:


> Christine - did you enjoy the short lived almost furlough. We will see what the next couple of weeks bring. Dh just found out they got rid of another guy from his old dept. A really smart guy gheesh.



I definitely did NOT enjoy the short-lived furlough.  It was a very stressful day and just not knowing what you are doing it tough.  But it was over and we have spent an inordinate amount of time planning for NEXT WEEK'S  potential furlough.  Such a waste for this country.  Anyway found out that now I am considered "excepted" so I will be working shutdown or not.  Which is always sort of weird/eerie.




> At church yest the pastor told us not to hug, shake hands with anyone etc due to the bugs going around. I was never so happy in my life. Last week I think some guy was miffed because I wouldnt shake his hand. Its going around here like crazy, so many sick.



So I did not get the flu shot either because I'm paranoid.  But I'm terribly paranoid about the flu (go figure).  I am have essentially been hibernating in my house whenever I can.  Our local news reported last night that churches in the area were getting rid of communion with the chalice cup.  Seriously?  It's just now occurring to them to stop that?  I have lots of shouting matches with the TV.  Personally, if I was worried about the flu or if I was compromised, I would not even go to church.  I think the large, group gatherings huddled in one place are bad news.  Especially since they are not reporting that people who aren't even exhibiting symptoms yet are exhaling the virus into the air.  The particles are so small that they just hang at face-level for hours.  Best to just be out of crowds. Period.

I have my 6 month endo check up on Monday.  Hopefully it will be uneventful.


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## macraven

Christine how was your check up Monday?

Hope all is fine

I had my surgery and was told should be feeling much better 5-10 weeks from surgery
My large tumor was 224 mm

Surgeon did a good job and stitched me up where scar will not be as noticeable 

Was stuck at ohare longer then planned but so were many others
Snow storm knocked a lot of flights out and delayed many others

I ended up at the airport for 11 hours but I did get out that night
I was one of the lucky ones that was switched and not having to sleep in the hotel by the gates 

Just had second week of labs done and working on synthyroid level

Hope all are staying well and have been able to avoid the flu


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## Christine

macraven, glad to hear the surgery is over with and all seems to have gone well.  You're a trooper.  11 hours in the airport would have had me going out of my mind.

My checkup on Monday was good.  TSH just a little low.  Thyroglobulin is undetectable.  My TSH keeps dropping without me changing my meds.  Obviously still being impacting by declining estrogen.  I may back off a 1/2 tablet a week.  I haven't been sleeping well for a few weeks.  Honestly, it's probably work stress but who knows.

I am still in "flu avoidance" mode.  Not going out a lot and trying to stay away from people.  Two people in my office got sick early in the week.  Not sure if it was the flu or not.  They did have their flu shots.  I can't wait for this time of year to be OVER with.


----------



## SingingMom

DD flies home tomorrow and then the three of us are heading to LAX for the Backstage Magic ABD!  We added one pre and one post day, so it should be fun.  Ive never been to California, so I'm looking forward to it!  DH & I packed this weekend, and now we are seeing the temps cooler in California.  I know "layers", but some things just don't go together.  LOL  Oh well.  I'm SURE we can handle it!   Just returned from DH's leg Doppler and all was good for clots.  We are going to wait on the CT with contrast until June time frame, so there's enough to time to make sure the xarelto is working and the initial damage is ok now.  Tech said he's good to fly - go have fun.  Again, we thank the good Lord for leading us to the right doctors at the right time, or we wouldn't have him with us.


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## luvmarypoppins

Just checking in thyroid peeps

macraven - was your tumor really 224 mm? That is like twice my size I think of 12.5 cm. if so, that was a huge one for sure! Wishing you all the best and hope you are well on your way to health and healing

singing mom - I hope you have a wonderful trip with your family and great to hear your dh good test results after all he went through

Christine - do you know when your May disney dates are. We will go around the 17-23 I think so far. I told ds2 not to have the bridal shower then lol. We will most likely be at the Swan or maybe some time of it at the YC or BC if I can get a good rate or cash in some of dh ff miles for it.

Well Friday I had my blood work and sono. So its wait and see. I got my great sono gal. Just love this lady. She said you are probably wondering why I am not going down the hall (after the test). I said yes as she always goes to review with the radiologist. She said the rad. is gone and she told me to only take extra pictures if I see something new etc. and I don't so you can go. I want to believe all is well but with all I have been through I really dont trust anyone or anything except God. My dh and ds3 were telling me I just need to be happy and accept it. I guess they dont know how my mind works these days lol. I just have to deal with things my own way. 

In other news. Ds3 needs a new car unless this one can get fixed. We told him just buy a used one. He has the original car we bought him for college and it was used when we got it and ts 12 years old. It doesnt pay to put money in it. He needs something reliable for when he gets married etc. Ds1 is looking at houses., ds3 is contemplating moving to Calif. to be travel nurse. I said fine, but cant you wait until after the wedding. Supposedly he is going to be the best man. Dh will probably go to the west coast next month. Always something. Hopefully this week I can schedule the pulmonary test and mammo. 

Check in when you can


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## SingingMom

Just back from our Adventures by Disney Backstage Magic tour.  Very interesting, especially since I had never been to the West Coast.  Our guides were fabulous, our group was very pleasant and small - only 17, which was great! Saw special things not open to the general public - what a thrill.  Imagineering was so surreal.  Stood at the corner of "Mickey & Dopey" - I felt like I was in the middle of "One Man's Dream"!   Unfortunately, we only had one day of warm weather - Southern California had quite a cold spell while we were there.  Didn't pack as wisely as we should have!

I will say - did not like LA as much as NYC.  TOO MUCH traffic!!!  Disney Parks are quaint - Disneyland Hotel room was fabulous, but I prefer the amenities at WDW.  The Loews Hollywood Hotel had a great view of the "Hollywood" sign and was next to the Chinese Theatre, but the area was a bit too congested & tacky.  Would have preferred staying in West Hollywood/Beverly Hills area.  The Grove was very nice.  DD and I are fans of Real Housewives of Beverly Hills and Vanderpump Rules on BravoTV (our silly guilty pleasure!  ) so on two of the evenings we were in Hollywood area we had dinner at SUR and Villa Blanca!  Both were terrific!   Best two meals of the entire trip! 

Two extra special surprises of the trip - a private tour of Walt's apartment and a special early park entrance for our group - we took pictures in front of the castle all by ourselves - AND we got to meet the new President of Disneyland Resorts!  What a magical experience!!


----------



## luvmarypoppins

singing mom - sounds like you had a wonderful trip. I would love to see Walt's apartment too

macraven - how are you feeling? I hope you are getting back to feeling great. I am sure its a slow process

Christine - have you had any bad weather down there?

Everyone else jump in and comment and update us!

Well yest. was my endo visit and it turned into an umm....ordeal to say the least. First the resident comes in. O.K. its a teaching hospital I get it. I chit chat a little with her and she is assigned to ds3 floor and knows ds. She says he is interesting or something like that. When I told ds he said she is strange and they all say she needs a makeover lol. Anyways I checked the list of questions and she asked me about my foot. I told her the left foot was swelling and one toe was discolored. So she looked at my foot, the dr. looked at  my foot and said I hate doing this but I m sending you to the emergency room, what???? What a nightmare. She said she thinks I had a blood clot. Well long story short after hours in the er and having ds come down a few times and me having the dopler stuff and a cardiac enzyme test they concluded I dont have a blood clot, dont know why my foot is like this and see a cardiologist and my regular dr. Well the endo and I barely got to discuss my cancer stuff. I remember that she said my tsh is great either 0.4 or 0.04 which is a great decrease from 1.57. She is making me take an extra 50 mg pill on sundays and going for a blood test in a month. Then when I checked out I realized that she didnt give me my 6th month test slips so I insisted the clerk go and get them which she did.

Now today I realized she never did my prescription refills, that is done electronically and then I realized we never talked about the pet scan which I should have in June. So when she calls back with the results or if the nurse does I am getting on this in a month and resolving this. My head spins. 

Now Mon. I can have the primary dr. give me the business about not getting the pulmonary function test or mammo yet good because the scripts are up so we will try again.

Ds 1 keeps getting outbid on houses, ds2 and almost dil might put an offer in on a house and they both had the flu. Ds3 is going to California on friday to visit his friend who is a travel nurse. They want to go to Disneyland and I guess he will check things out for his probable future move. My head is spinning. I am still looking on line for a gown long dress for the wedding. She told me dark colors and now ds showed me a picture of her mothers gown like a sparkly greyish white, sorry that is not my style, She can do the glitz and glam. Too bad its not something casual. Ds laughs as I said I dont think I own a dress anymore. Her dad went with her to pick out the wedding dress. She hasnt showed me a picture. I dont care about it as I have enough on my mind to deal with. Also we are dealing with the other property we own and tenant and  the never ending stuff with that. 

Check in when you can.


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## macraven

_LMP, sounds like you had a heck of a day with all that running around for the testing!
Good you did not have a blood clot, it is the last thing you need to deal with.

I ended up with two of them after the knee surgery and still get checked.
When I had the gland surgery in January, coumadin was still registered in my blood.
Long story.....

Yes, I had a large tumor removed and a parathyroid gland too.
Only have about 3 more weeks before I'm released from the doctor from that surgery.
I'm get better every day

I'm confident that all will be fine so with thinking that way, booked my Disney trip for september today.

Hope all are doing fine!_


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## SingingMom

Hit with 22 inches of snow and lost power for three days!  Just returned last night.  We have a small generator and wonderful neighbors who set the furnace up to the generator.  So, we had heat and the fridge was plugged in.  Lots of trees down - area was hit really bad!

I'm scheduled to go to see dd on Wednesday - my girl wants corned beef and cabbage for St Patricks day, so by golly, this Italian mom is flying to Florida to make it for her!   lol    Poor hubby has to stay home to work, but he's so good about knowing I NEED to get away from this cold & snow!!!!

Feel better Macraven!  You've gone through a lot.  LMP - you'll find a gown - don't fret!  Get something you feel happy in.  So what if others decide on glitzy!  You will look lovely.     (and remember the joke they say about the "mother-in-law" -  Her job is to wear beige and keep quiet.  LOL)


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## Christine

Hello everyone!  Good to read everyone's updates.

No bad weather here.  We've avoided most storms that everyone up north got hit with.  I did want just one.  We did get a "snow day" for the high winds about 10 days ago.  They were worse than most hurricanes we have and we did lose power.  

Nothing much new here.  Well, I did buy a new car.  2018 Toyota Camry.  It's very boring.  An old man car!  I've been driving a VW Jetta that originally by DD bought, then said she didn't need since she was living in the city, but now would like back.  So that swap has been done.  

DS graduates in May and still is saying he'd like a Disney trip.  I may just pay for him and his friend to go.  He'd like all of us to go but I've got the almost-18 year old dog here and she cannot be left or boarded.  I don't really want to go on my own with my son and his friend.  So that's up in the air.  I was a little bummed though that for the dates we want, the Shades of Green was all booked up (May).  I usually don't have an issue with them, even relatively late in the game.

Not sure where else I could stay and was starting to look offsite.  It's a work in progress.


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## SingingMom

Christine said:


> DS graduates in May and still is saying he'd like a Disney trip.  I may just pay for him and his friend to go.  He'd like all of us to go but I've got the almost-18 year old dog here and she cannot be left or boarded.  I don't really want to go on my own with my son and his friend.  So that's up in the air.  I was a little bummed though that for the dates we want, the Shades of Green was all booked up (May).  I usually don't have an issue with them, even relatively late in the game.
> 
> Not sure where else I could stay and was starting to look offsite.  It's a work in progress.



Have you looked at Coronado?  The prices are reasonable because they are in the middle of a big room renovation, convention center addition, and the gondola installation.   It's big and busy, but the new rooms are very nice.   Only time I deal with offsite is when I'm staying at DD's.  Otherwise, the transportation is my deal breaker.  Of course, I just rented a car for this coming week for $550 and I should just uber and borrow DD's car!


----------



## Christine

SingingMom said:


> Have you looked at Coronado?  The prices are reasonable because they are in the middle of a big room renovation, convention center addition, and the gondola installation.   It's big and busy, but the new rooms are very nice.   Only time I deal with offsite is when I'm staying at DD's.  Otherwise, the transportation is my deal breaker.  Of course, I just rented a car for this coming week for $550 and I should just uber and borrow DD's car!



I'll look into it.  I was on the WDW site today and I didn't notice that it came up but I was having terrible internet speed at work so that wasn't going well.  Thanks!

He did end up booking some flights from 10-15 May so now he's got to find a place to stay.


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## luvmarypoppins

Christine - we will miss you as we will probably do the 17-23. 

The leg/foot saga continues. PCP didn't like how it looked. Took another picture for my chart. Ordered a stat ct scan. Got that done today, last patient. With contrast. Seeing the vascular surgeon stat Thurs. I don't like him but he is good medically. Saw him 2 years ago with the blood clot. They said elevate and use the compression stockings I have.

Tomm. we are having another snow storm. Ds3 will try to make it into the Hosp. We will be hit hard they say. winds again and at least 7 inches of snow.

Oh spring where are you.


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## luvmarypoppins

Well the leg/foot drama continues. The vascular surgeon said yes he sees my feet but the tests say I have good flow so its not a vascular problem.

Could possibly be a  blood clot from the heart and that is why I have to go and have the echo. I will work that next week around dh schedule and the predicted new storms coming, sigh.  Then I will get to the mammo, pulmonary function test and oh did I mention the resident who did my mini physical said I have cataracts in both eyes. I did notice the L eye is a little blurry. Always something, sigh. Add that to the list. 

They are shipping a guy from Va up here so there is a target on dh back for sure. Supposedly this guy is the best in the world, better than dh and he does not like dh. I told dh not matter what happens we def. need good health ins. We can buy it off the state exchange but I dont know how good it is. There is also a rumor that this fall they will try to get rid of 100 people. The older you are the sooner they try to get rid of you. But dh is not ready to retire. Never a dull moment.


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## SingingMom

LMP - I just spent a week with DD - glorious weather and did NOT want to return north, but there's that pesky thing about hubby and dog still in NJ... 

Tried The Plaza in MK for the first time - they just went to reservations only.  Food was decent and better than your average but the service was TERRIBLE.  

Last time I was at the eye doctor he said I had the start of cataracts in both eyes.  I am waiting for the surgery because you can't fly afterwards and I go back and forth to visit DD every month!  lol


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## Christine

Hey everyone, hope all is well.  SingingMom, I am SO jealous of the good weather you experienced!!  I just need to be in Florida.

We finally got my son's room booked.  He's staying at Hyatt Place in the Lake Buena Vista area.  Got it on Priceline for about $30 off a night and he gets his "free" breakfast that he wanted.  If he couldn't get a Disney resort, then he wanted an easy breakfast where he was staying.  Also got free parking for his rental.  

Just after I did all that, my DD tells me she miscalculated her leave and she thinks she has enough to go so now we may add on to the trip.  Her times for flying are fairly limited though, due to her work schedule so I don't know if it will work out.  Crazy but I feel like if *I* am going, I must go to the Shades of Green and get the park tickets.  They are $130 cheaper PER PERSON.  This means I need to get over to the SoG before they close at 7PM, yet DD can't leave in the morning.  So, still working on that.

Otherwise, we finally got our snow in the DC area.  It was only 4 inches but it came right at the *right* time to close down work.  Well, I still had to work.  It's laughable, really, how little snow it takes around here to freak people out.  To think I lived in Maine one year with 200 inches of snow each winter and managed to drive around everyday.  But it was different.

Not much else going on at all.

LMP--hoping for the best on your husband's job situation.  Sounds very nerve wracking.


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## luvmarypoppins

Hi thyroid peeps, how is everyone doing?

I went for a blood test yest. Its to check the tsh level after she reduced my sunday synthroid. Then dh went to visit the univ. so I went along for a ride and then we went out for dinner at a place we like. They must have new management or a new cook because it was terrible. 

And in other news I still need to schedule the other tests I need. Coordinating this with dh schedule is next to impossible these days lol.

Ds1 I think is buying a house. He is not really speaking to us since we refuse to help give him any money for it. We have been supporting him enough. Ds2 and future diil put a bid on a house but didnt go through with it after they checked out the neighborhood at night. Said it wasnt all that safe looking, sigh.  The bridal shower is june 30 and our whole family is invited. I think its at a very fancy place and dh will be in France then. Its so far away as usual, sigh. The car ride alone is like an hour and the shower is about 5 hours. I will beyond exhausted, wilted more like it lol. 

Ds3 is off to Costa Rica and Peru for a vacation in a few weeks. I know he will not be here for mothers day and I think he gets back after my bday. Such is life. He put in and had an interview for a new neuro icu unit. He heard from a friend that they said he really stood out in the interview. But all jobs there are union and seniority, so he says if they do not offer him a day position or he might consider 11-11 then he will just stay on his floor because he wont do the night shift. 

I havent planned our disney trip yest. I just realized its my birthday with a big 0 in it and our anniversary that has a 5 in it, so I am talking dh into splurging for the yacht or beach club for some of the time, we shall see. 

Getting a new water heater next week I hope. Need to go stove shopping one day too. Dh had the flu for like 3 weeks and was miserable

Well check in when you can and hope everyone is doing well.


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## SingingMom

Been very crazy around here.  Dad had partial bladder removal due to bladder cancer secondary to prostate cancer radiation seed treatment. He is in great spirits and doing well.  Hopefully he will feel well enough to enjoy our cruise on the Magic to Bermuda in October to celebrate his and mom's 80th birthdays.

I had to add a new bp medication to my daily list, but it seems to be helping.  Had my annual gyno last week & he's sending me for an abdominal ultrasound because my muscles were so tight he couldn't do entire exam.  Said "no rush" but of course I'm freaking out now.  I need to make the appointment soon.

Going to visit DD on Sunday - spending two nights in Clearwater Beach because she needs some down time and I want to start researching "areas I like when hubby retires".  lol  I'll take her to work the other days and do mom stuff for her or walk around the parks until she is done.  I'm looking forward to Florida sunshine after this lousy northeast "spring".


----------



## Christine

Hi everyone! 

All is well here.  So not going to Disney after all.  My DD's schedule just couldn't quite work out and it was getting more annoying rather than pleasurable so I just bowed out.  Also, I've decided to go back to school and that starts on May 7th and very compressed schedules so it's just as well.  

DS graduates this coming Friday.  We went down to his school yesterday (2 hour drive) for his computer competition.  His team and another were tied for 1st place so they had a 3 hour presentation contest.  Unfortunately, my son's group came in 2nd by a very narrow margin.  He was bummed, but it was really good that he made it that far.  There were 24 teams.  He has one final on Wednesday and then he's done.  He then goes to Disney from 10-15 May.  Picked up his discounted tickets yesterday so he's all set.  It will be interesting to see how it goes for him since, IMO, the FastPass thing is ridiculous unless you are a planner.  I think impromptu trips are ruined but who knows.

Looks like we're finally getting some temps in the 80s this week.  I can't wait!


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## macraven

Christine, sorry your disney plans are off now.
You'll find another time period to go there.

Good luck on school!


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## luvmarypoppins

Christine - congrats to your ds on his graduation. It's great that you are going back to school. I hope you enjoy your classes!

singing mom - have fun with your dd and in the parks. Hope you have great weather!

macraven - how are you feeling?

Got the blood tests results, no med change as the TSH is going down. Got the new water heater installed. Booked the trip. I am a little Leary of flying southwest. We are getting double points though. Booked three days at the Swan and then three at the Beach club.May 17-23. Made some adrs. Cape May for hubs crab coma, Yachtsman because he asked for that, Chefs, Marrakesh, Brown Derby and the Plaza so far.

Going for the echocardiogram next friday.


----------



## prprincess

Hi Everyone! Been a bit MIA on this thread, but I hope that everyone's well. 

I wanted to ask if any of you who are hypothyroid or have no thyroid have experience with elevated liver enzyme levels? I went for a yearly exam last week, and the doctor sent me for testing, and lo and behold I now have to have further testing, including blood and an ultrasound of the abdomen.

I reached out to my endo for some insight, but all she said was that she agrees with my primary doctor's course of action and that I should have the tests done. As with all of my other conditions, I was hoping it was related to my not having a thyroid, but she wouldn't indicate so. Of course, I did a Google search. I'm definitely not a heavy drinker, so it can't be that. I have gained 10 pounds in the last year, so possibly fatty liver? Or even damage from medications.

Appreciate any feedback or stories. Thanks!


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## macraven

I googled that about hypothyoid and liver issues and only found articles that are 4 years old.


which means, i don't know as i have no experience with liver problems.


thyroid conditions can affect many of the organs.
My parathyroid is an issue due to being hypo

Hope you get some replies prprincess to help you


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## luvmarypoppins

prprincess said:


> Hi Everyone! Been a bit MIA on this thread, but I hope that everyone's well.
> 
> I wanted to ask if any of you who are hypothyroid or have no thyroid have experience with elevated liver enzyme levels? I went for a yearly exam last week, and the doctor sent me for testing, and lo and behold I now have to have further testing, including blood and an ultrasound of the abdomen.
> 
> I reached out to my endo for some insight, but all she said was that she agrees with my primary doctor's course of action and that I should have the tests done. As with all of my other conditions, I was hoping it was related to my not having a thyroid, but she wouldn't indicate so. Of course, I did a Google search. I'm definitely not a heavy drinker, so it can't be that. I have gained 10 pounds in the last year, so possibly fatty liver? Or even damage from medications.
> 
> Appreciate any feedback or stories. Thanks!



i had this happen to me once. The endocrinologist said it could be a few things, asked if I had been taking a lot of Tylenol and I said no. She just had me repeat the blood test and it was fine.

wishing you all the best.


----------



## Christine

prprincess said:


> Hi Everyone! Been a bit MIA on this thread, but I hope that everyone's well.
> 
> I wanted to ask if any of you who are hypothyroid or have no thyroid have experience with elevated liver enzyme levels? I went for a yearly exam last week, and the doctor sent me for testing, and lo and behold I now have to have further testing, including blood and an ultrasound of the abdomen.
> 
> I reached out to my endo for some insight, but all she said was that she agrees with my primary doctor's course of action and that I should have the tests done. As with all of my other conditions, I was hoping it was related to my not having a thyroid, but she wouldn't indicate so. Of course, I did a Google search. I'm definitely not a heavy drinker, so it can't be that. I have gained 10 pounds in the last year, so possibly fatty liver? Or even damage from medications.
> 
> Appreciate any feedback or stories. Thanks!



I know it's hard not to worry, but try not to.  Oftentimes, these elevated liver counts can disappear.  Some medications can cause this, although I'm sure your doctor went over them.  A high sugar/junky food diet can also (I'm sure you have already read about non-alcohol related fatty liver disease).  That seems to be a growing issue these days.  Hopefully it turns out to be "nothing" but I am not aware of any hypothyroid condition that causes it.  Now, having said all that, back in the dark ages when they used to remove you from your thyroid medication to have a scan, my TSH got up to about 145.  I was SEVERELY hypothyroid.  Yes, my liver bloodwork was off.  But they knew it was due to extreme hypothyroidism.  Once back on meds, my liver function quickly returned to normal.

Keep us posted on how this goes for you.

LMP:  Have fun on your trip.  I am so jealous.  One day I'll get back there!  Still going to Cape May for the crab legs, I see!  My son has a few things planned:  Boma and Sanaa.  He's also going to Biergarten for lunch one day.  I guess he has fond memories of that.  He didn't have a whole lot of luck getting fast passes but that's to be expected for a quick trip.  Man, they've taken the fun out of a Disney trip.  I like to plan, but not that much.


----------



## prprincess

Thanks luvmarypoppins and Christine! It is hard not to worry, but I can't help it. I at least got the second round of blood work done on Saturday, and then I go for the ultrasound tomorrow. I'm hoping that it's something as simple as changing my diet!! I will keep you posted on what they found as soon as I hear.


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## luvmarypoppins

Well hope everyone had a good Mother's day. Mine are always memorable . Ds2 got late to church and couldn't sit with me. But he cooked the dinner. Ds1 was his usual  unhelpful self sigh. But those two will be gone soon.
Ds3 video chatted from Lima, Peru.

Had the echo Friday. The Pcp called me and said talk to a staff member about the results so I guess I am assuming it's ok??

Not looking forward to all this rain for the upcoming trip. The wheelchair needs its own poncho lol. I am bringing books and maybe buying another pair of water shoes.


----------



## Christine

luvmarypoppins said:


> Well hope everyone had a good Mother's day. Mine are always memorable . Ds2 got late to church and couldn't sit with me. But he cooked the dinner. Ds1 was his usual  unhelpful self sigh. But those two will be gone soon.
> Ds3 video chatted from Lima, Peru.
> 
> Had the echo Friday. The Pcp called me and said talk to a staff member about the results so I guess I am assuming it's ok??
> 
> Not looking forward to all this rain for the upcoming trip. The wheelchair needs its own poncho lol. I am bringing books and maybe buying another pair of water shoes.



Yeah, there's a lot of moaning on the theme park boards about the rain.  My son is in the thick of today.  It's really just the start of it. But he's surviving.  He ended up have 3 good days.  Today and tomorrow will be awful.  I don't mind a day or two of rain, but day after day gets old and YUCK on the ponchos after an hour or so.


----------



## SingingMom

DD said it's going to rain all week.  Of course, as a CM in MK, that sometimes means less crowds.  But, the ones that DO come, complain about the weather!  She said she's amazed how many people act as if SHE has something to do with the weather, or crowds, or fastpasses, etc.  lol  She said "as if I were that powerful!"


----------



## Christine

SingingMom said:


> DD said it's going to rain all week.  Of course, as a CM in MK, that sometimes means less crowds.  But, the ones that DO come, complain about the weather!  She said she's amazed how many people act as if SHE has something to do with the weather, or crowds, or fastpasses, etc.  lol  She said "as if I were that powerful!"



They are probably complaining to her hoping for her to do something "magical" for them!

But seriously, if you only go once in a lifetime or every few years and you spend thousands of dollars (and are trying to escape the Northeast!!), it can be pretty devastating to have one week of rain.  It's always my biggest fear when I book a trip.   And if that's my biggest fear, then I guess I'm doing pretty well!!!


----------



## luvmarypoppins

Back from the trip. Rained going there in NY, rained there and more rain here lol.

The Swan was good but we didn't enjoy no friendships. We walked to Boardwalk and took it there to Epcot. 

Third day of trip we heard from ds3. He was in Lima  Peru and they wouldn't let him come to Costa Rica as he didn't have the yellow fever vaccine, could be be with us? Not too thrilled. His travel mate went to Fort Lauderdale. He came with only the clothes on his back. His bag came later and he was washing clothes at the Dolphin at 1 am. Good he has an ap.

he came in handy pushing the wheelchair when needed. I added him to most of the meals except the anniversary at the Yachtsman.

the Beach Club was great.  Loved swimming in storm along bay and our room was good. 

Food was good except Marrakesh. Went to Garden Grove breakfast, lunch at Liberty Tree. Got a golden fast pass there for our anniversary. Gave it to hubs and son to ride the mine train.The wait was 90 minutes! Changed the Plaza for Kona. Loved Chefs!

ds 1 waiting for his house closing. He is now an uber driver for extra cash. Ds 2 and almost wife still house hunting. Ds3 starts new Neuro icu job next month. 

Hubs is in Newport news till wed. Then France and Germany end of month.

still need lung tests and eye dr.

check in when you can.


----------



## Christine

Hi LMP, I was wondering how your trip was.  Don't you just LOVE the rain.

I spent the day in Harrisonburg, VA on Saturday getting my son's stuff out of his rental and it rained like I have never seen.  Torrential downpours for 6 hours straight.  This rain is depressing me.

Sounds like you had a good trip.  I still want to go!


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## macraven

_It’s been a bad time period with so many getting heavy rains_


----------



## SingingMom

Yes.... DD has been accused of ruining a number of people's vacations this past month due to the weather.....  I can't get over how crazy some people are!  Blaming a cast member for the weather....


----------



## luvmarypoppins

This thread is quiet. Dh is off to Germany for ten days. He now has to have a separate trip to France.

ds 1 house closing is this week. Ds 2 and fdil bought a house too 30 minutes from us. The shower is sat. I was told I am sitting with her mom and 2 sisters. Oh joy.

I was also informed We will be sitting with her parents at the family wedding table. Wth. I told dh after we eat move my chair so I can sit with my friends and relatives. Sigh.


----------



## macraven

When is your son's wedding?
Are you getting excited for it, I bet you are!


----------



## luvmarypoppins

macraven said:


> When is your son's wedding?
> Are you getting excited for it, I bet you are!



the last sun in aug. I want this over and I am getting frustrated not excited. Spent about three hours shower shopping with d's3 yest.

now fdil wants the rehearsal dinner at a place with a private room. No place here will do it for our amount of people.  Not enough twenty minimum. It has to be lunch and now they want it closer to her parents place. I told ds2 you said it could be near us since the wedding and shower are so far away, they must have gluten free food etc. I said what about a quick practice after our church  told him the parents aren't expected to go. Just to use the place etc. or in a park and then the nice lunch.etc. The rehearsal is a week before the wedding. In our day it was the night before and at the wedding venue. This is so strange. We can't even go to the real place.They said I can arrive way before the wedding time on that day and check it out. 

add in my cousins from Ohio booked a hotel by 
the wedding and wanted to visit and go find some relatives grave the day after the wedding. I will be so dead exhausted.  I am done before I start.

and now the endo office called and bumped my visit down two weeks so I need new scripts sent because they will be past the six month time. Had to explain that to the scheduler. Oh and did I mention it was a time I was thinking of a good food and wine disney date week lol.

enjoy your cheese because you have heard my wine everyone! Lol!


----------



## Christine

LMP,

You are right, this thread has been VERY quiet.  I've looked at it a few times and didn't see any action so I just move on.  I haven't had anything exciting to report so I'm a guilty as the next person for not being "social" here!

Weddings are great aren't they?  Especially when you don't overly feel well and have to do all these things.  I honestly don't know what gets into brides not thinking about things.  In my history, rehearsal dinners are always the night before and the groom's family calls the shots there.  I know it doesn't *have* to be that way but still.

I haven't been doing anything good.  Unfortunately, yesterday, I had to put my 18 y/o dog down.  It's always such a hard decision and I'm still not sure that I did the *right* thing but she was so old and hardly eating and drinking.  Ended up with some big mass under her front left leg/armpit then got lymphadema all down the leg.  I'm sure she was riddled with cancer.  It's so hard today not having her sitting right beside me while I'm on the computer.  She also slept in my room and I just miss her presence.  I know it's the humane thing to do but I feel like I copped out.  I've had to do this now with 5 different dogs so I know what I'm feeling today is normal and will go away.

Medically, in the last year or so, I've been getting petechiae on my lower legs.  It started abruptly after a jog one day and I chalked it up to that.  Almost like the "Disney rash" you hear about.  It then happened again this past May when I went to my son's college graduation and I was on my feet all day.  In between all that and now, I get smaller "dots" on my legs and other places.  I went to my MD about it earlier this week because I had convinced myself I had leukemia or some other blood disorder.  He did test for all those things and at least in the blood disorder area I'm good.  So it may just be due to getting older and fragile scan.  He said as you get older the venous return is not as good and, of course, you'll see the start or acceleration of varicose veins, spider veins and just vein issues in the legs.  He thinks it just might be something like that.  That my capillaries and fragile, fair skin are susceptible to small bleeds now.  So I feel better about that.  I have a dermatologist appointment in late August to get it evaluated from that angle in case it's something like lupus or what have you.  God, the internet is scary when you look it up!!!  Since having all my RAI I am always worried about leukemia risk.  I've told me endo that so he does run a CBC once a year to keep tabs on it.

On the GYN side of the house, I have sort of officially been told I have something called lichen sclerosis which is kind of like an autoimmune disorder affecting the skin of our "lady parts."  Fun times.  I think I've had it all my life but it has gotten worse in peri menopause and now menopause.  My GYN is putting me on oral estrogen to help.  I'm sort of scared because I don't do well with anything but she did say that most women she prescribes it too feel WONDERFUL after they start it and never had realized how crappy they were feelings.  So I'd be happy if it was a little magic pill.  Well that was probably more than you all wanted to know.  But I will have to watch my TSH/T4 levels with the estrogen because estrogen binds to it and I may need more thyroid medication.

Well, hope everyone has a nice rest of the week and Happy July 4th!


----------



## SingingMom

Just enjoyed a whirlwind week with DD visiting home.  We had a wedding on Sunday - dear friends of ours middle daughter got married and of course invited DD.  (two cousins had weddings in Florida right near DD and neither invited her @@)    It was outdoors under a tent - very warm but it was a lovely time.  They had an afterparty and had shuttle service, so we decided to stay over night so DH didn't have to drive.  Lots of fun.  Then Monday we went into NYC,(stayed at the Marriott Marquis, and saw The Broadway Princess Party at 54 Below.  our seats were practically on the stage - the lineup was fantastic - original Belle from Broadway Susan Eagan, who also was voice of Meg in Disney's Hercules, Liz Callaway- original singing voice of Anastasia in the animated movie & Jasmine in the two Aladdin sequels, Laura Osnes - Cinderella on Broadway (among other shows!) Courtney Reed-original Jasmine in Aladdin on Broadway, and Christy Altomare- Anastasia on Broadway.  Special guests were a bunch of Broadway princes!  Derek Klena from Anastasia on Broadway, Adam Jacobs- the original Aladdin on Broadway, Corey Cott (from Gigi, Bandstand, & replacement in Newsies) and our all time favorite Jeremy Jordan (Jack Kelly in Newsies, Clyde in Bonnie & Clyde, and Supergirl & SMASH on tv, among other things)    

We've followed Jeremy's career for years, and DD was thrilled to see him - he saw her and said "HEY SWEETIE, you're here!!!" and patted her arm.  (DH & I were at a concert the week before & he was teasing that she wasn't in attendance)  She was so excited he recognized her!  If you get a chance, look on YOUTUBE for "Broadway Princess Party" and you can see some clips!  The one with Laura Osnes and Jeremy & Corey Ten Mintues Ago/Agony mashup you can see DH & I on the right of the video. (stage left)  lol)

Tuesday we went to Afternoon Tea at The Plaza with friends - then walked in Central Park & down 5th Avenue.  It was gorgeous out!  Perfect week with our Disney Princess -  flew back to Fantasyland last night!   I'll be down in three weeks to do some "mom stuff" for her.   

Keep well, all!


----------



## luvmarypoppins

Christine - so sorry about your fur baby


----------



## luvmarypoppins

singing mom - you have such wonderful adventures with your dd. So many experiences to treasure! Sounds like you met some wonderful celebs!


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## macraven

Christine 



It is never easy to say good bye to a loved pet


----------



## Christine

Thanks for the thoughts.  Not unexpectedly, my MIL passed away yesterday afternoon while my husband was driving back from seeing her.  She has had active Alzheimers for about 6 years now and finally her body gave out after 12 days of not eating.  She lives in North Carolina about an hour outside of Asheville so we are headed down on Sunday for the funeral.   One too many tough things this week.


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## macraven

Sorry to hear that news Christine.
again, sending  you 

No matter how old the relatives are, it still is a shock when they pass.


I have very few relatives alive and one of them had a memorial service yesterday in Michigan.
I did not go but kept thinking about her .....
No big family gathering but rather quiet with just her kids, husband and brother.
He wanted it low key since it was a suicide.


----------



## Christine

macraven said:


> Sorry to hear that news Christine.
> again, sending  you
> 
> No matter how old the relatives are, it still is a shock when they pass.
> 
> 
> I have very few relatives alive and one of them had a memorial service yesterday in Michigan.
> I did not go but kept thinking about her .....
> No big family gathering but rather quiet with just her kids, husband and brother.
> He wanted it low key since it was a suicide.



Oh, wow, that's awful.  I always feels so bad when I hear about suicide because of the horrible suffering for everyone involved.


----------



## luvmarypoppins

Christine -so sorry to hear about your mother in law. Sending you my deepest smpathy. Thoughts and prayers for God's peace and comfort during this difficult time.

macraven - so sorry about your family loss too and also sending my deepest sympathy, thoughts and prayers When you live so far away you wish you could do more. When my cousins son committed suicide last year they had their own service too. I talked on the phone and emailed him and Sent him a plant and fruit basket. I felt I wish I could have done more but I respected their privacy and how they chose to grieve.


----------



## luvmarypoppins

And here is the bridal shower update. I am glad I brought the walker to use. It was a hike to our room. 

her mom was in the hospital and couldn't come. it was small as I have no family and she had some relatives. 2 girls from work and her best friend and 2 sisters sat with us. Never met her nonna. Very quiet and anti social family.one sister spoke to me. 2 little girls were there, so cute and well behaved. They did take one picture with me sitting with her and the ds. My one ds said he wanted a picture with her and the 3ds. I asked to be included.  Never once did  she ask to have a picture with me, so I don't feel bad at all when I told dh and ds I am moving my seat after the wedding meal. Lol.

Ds said I should have asked her for a picture. Um, no. I guess it just shows her true feelings, oh well. Such is life. What is the saying about not being able to choose your relatives lol. 

and we straightened out the rehearsal dinner. Practice at our church and dinner at 4:30. They only have a big lunch. Sorry take your $100 plus meal home in a doggie bag. We are just having a table because we are too small for a private room. She also had to make sure the food choices were ok for her family. They can order whatever they want. 

And this is only the first ds!


----------



## SingingMom

Christine said:


> Thanks for the thoughts.  Not unexpectedly, my MIL passed away yesterday afternoon while my husband was driving back from seeing her.  She has had active Alzheimers for about 6 years now and finally her body gave out after 12 days of not eating.  She lives in North Carolina about an hour outside of Asheville so we are headed down on Sunday for the funeral.   One too many tough things this week.



Our sympathies to your family at this sad time.


----------



## SingingMom

macraven said:


> Sorry to hear that news Christine.
> again, sending  you
> 
> No matter how old the relatives are, it still is a shock when they pass.
> 
> 
> I have very few relatives alive and one of them had a memorial service yesterday in Michigan.
> I did not go but kept thinking about her .....
> No big family gathering but rather quiet with just her kids, husband and brother.
> He wanted it low key since it was a suicide.


 Thoughts with you and your family


----------



## Christine

LMP,

That sounds like a very strange bridal shower.  I certainly hope after time passes that your future-DIL will come around a bit.  It doesn't sound like an ideal situation.  I probably wasn't the best DIL to my late-MIL.  Part of it was that early on she put a lot of pressure on us to drop any plans we had for the weekend and always "come for dinner" and sit around.  Even way back then I was working full time and my weekends were chock full of errands so we hardly ever did and I know she used to get pissed about that.  

We got back from my MIL's funeral on Tuesday night, so I had the 4th off to recover.  I'm not sure what's wrong with me but ever since I had to put the dog down and then go do the funeral stuff I have just not been mentally "right" if that makes sense.  For a few days I felt like I was in a deep depression.  That is so unlike me.  To be honest, it hasn't totally gone away.  I've had a few bouts of vertigo also which is also unusual but it has happened before.  I'm trying to eat better and get out and take a walk but I need this feeling to lift.  I'm not consciously thinking about my dog or MIL (who I never saw much anyway) but maybe that last week was just too stressful for me.  I don't know.  

In the meantime, my son has about 1 month left before he starts his career.  Now that I am home and don't have the dog issues, I've been sitting here for two days trying to plan an impromptu Disney trip for late July, early August.  For a minute it excites me, and then when I get bogged down in the details I start getting overwhelmed.  Probably just part of this weird depression.  Should I fly (but then the flights are high and the affordable ones STINK), or should I drive (uuuggghhhh 14 hours!!).  I'm afraid the time will pass and I won't do anything.  I think this will be the last time I can actually have a "family" vacation once my son starts working.  It's already impossible to get my daughter to be able to do much.  They just don't earn a lot of vacation time.

Oh well, sorry for the "downer" post.  Hopefully I will get out of this funk soon.


----------



## luvmarypoppins

Christine - sorry you are dealing with these emotional issues. It's understandable with all you have been through. Rest, heal and be good to yourself. Prayers for you.
I hope things work out for your vacation.

Well just found out the worlds expert is coming from Virginia in August. The handwriting is on the wall. i will be praying alot. This guy is the golden guy and they will treat dh like tarnished copper.  He heard the guys wife doesn't want to come. It's to be for a year but he knows they'll hire him permanently, sigh. Dh is just hoping to keep his job at this point.

made appts. for the pulmonary function test and eye dr. Now I need to do the mammo too. Need to finish by end of July because dh is heading to the west coast again for 10 days in aug. Sigh.


----------



## Christine

LMP,
Well good luck with the "world's expert from Virginia."I hope it doesn't mean what you think.  Maybe the wife will hate it there and he won't stay. 

Still working on my Disney trip.  I'm torn between a Disney deluxe resort (with a military discount) and getting a swanky place off site at the Reunion Resort.  I have to say that the overnight parking fee on Disney property is irritating me.  I know that sounds stupid, but sheesh!


----------



## SingingMom

Christine said:


> LMP,
> Well good luck with the "world's expert from Virginia."I hope it doesn't mean what you think.  Maybe the wife will hate it there and he won't stay.
> 
> Still working on my Disney trip.  I'm torn between a Disney deluxe resort (with a military discount) and getting a swanky place off site at the Reunion Resort.  I have to say that the overnight parking fee on Disney property is irritating me.  I know that sounds stupid, but sheesh!


DD used to work at Reunion Resort.  "Swanky" isn't exactly what it's cracked up to be.  There's no transportation to the parks and it's sort of a crap shoot of what you get - you could be paying the same price for the dumpster view that another person is paying for lake, pool, nicer view...

I hope you feel better - nothing is worse than that out of sorts feeling.  Plan a low stress Disney trip, stay onsite, and just relax. 
I'm heading down Wednesday for a week of "Mom stuff"  - DD will be working most of the time, but we plan on taking a day for a water park, visit a cousin with a new baby, and start looking at condo/townhouses. DH & I are thinking it might be financially beneficial to have DD paying a mortgage instead of rent.  Just want to see prices and locations for a start.


----------



## Christine

SingingMom said:


> DD used to work at Reunion Resort.  "Swanky" isn't exactly what it's cracked up to be.  There's no transportation to the parks and it's sort of a crap shoot of what you get - you could be paying the same price for the dumpster view that another person is paying for lake, pool, nicer view...
> 
> I hope you feel better - nothing is worse than that out of sorts feeling.  Plan a low stress Disney trip, stay onsite, and just relax.
> I'm heading down Wednesday for a week of "Mom stuff"  - DD will be working most of the time, but we plan on taking a day for a water park, visit a cousin with a new baby, and start looking at condo/townhouses. DH & I are thinking it might be financially beneficial to have DD paying a mortgage instead of rent.  Just want to see prices and locations for a start.



Thanks for the advice.  I think I'm set on staying at the Contemporary. I'm feeling pretty excited now.  It's really fitting.  I feel like this might be my last trip for a long time.  My very first trip was in 1975-ish and I stayed at the Contemporary.


----------



## Christine

Well, it's set.  I made my Contemporary reservations yesterday and I'm pretty excited.  Been on MDE booking dinner reservations also.  I went down to Quantico this morning to get my military salute tickets (what a deal) and they are now all linked.  Working on fastpasses now.  

Besides that, I'm still a wreck and I hope I can pull it together before this trip.  This past Tuesday night, I started having the issue of feeling like I can't get a deep breath ALL NIGHT LONG.  I've had this happen on and off over the course of the last 20 years.  Sometimes I chalk it up to GERD, sometimes anxiety.  But it is REALLY bad right now.  Last night was night number 4.  I finally had to "tranquilize" myself with some old Xanax I had.  It did help but it just doesn't make it go away.  My mind goes to all sorts of bad places as to what it could be.  The internet directs me to "congestive heart failure".  I keep telling myself that I had my heart checked with a stress test last year.  As a result, I'm working on very little sleep again.  I did call my endocrinologist (such a fabulous man) and said I was feeling "off".  He ordered a few tests and everything came back perfect.  Actually no change from 6 months ago.  But whenever I feel bad, I always make sure I rule out thyroid medication issues first.  

Anyway, not sure what kind of mental situation I've gotten myself into but it's not pretty.  I really hope it goes away so I can fully enjoy this trip.

As for the trip, I'm just grabbing some quick dinner ressies but can change at any time.  If you've got any must-do ideas, let me know.  So far I've got:
Citrico's (my son's absolute favorite--I could do without at this point)
Tiffins at AK
Teppan Edo and Epcot (we've never done this one.  I'm not wild about it because I feel like I can do this type of food anywhere)
Chef Art Smith's Homecomin'
Raglan Road (we enjoyed this about 10 years ago)

I have one more night open and I would also considered ditching Teppan Edo so if you have something that wowed you, let me know!


----------



## SingingMom

Christine said:


> Well, it's set.  I made my Contemporary reservations yesterday and I'm pretty excited.  Been on MDE booking dinner reservations also.  I went down to Quantico this morning to get my military salute tickets (what a deal) and they are now all linked.  Working on fastpasses now.
> 
> Besides that, I'm still a wreck and I hope I can pull it together before this trip.  This past Tuesday night, I started having the issue of feeling like I can't get a deep breath ALL NIGHT LONG.  I've had this happen on and off over the course of the last 20 years.  Sometimes I chalk it up to GERD, sometimes anxiety.  But it is REALLY bad right now.  Last night was night number 4.  I finally had to "tranquilize" myself with some old Xanax I had.  It did help but it just doesn't make it go away.  My mind goes to all sorts of bad places as to what it could be.  The internet directs me to "congestive heart failure".  I keep telling myself that I had my heart checked with a stress test last year.  As a result, I'm working on very little sleep again.  I did call my endocrinologist (such a fabulous man) and said I was feeling "off".  He ordered a few tests and everything came back perfect.  Actually no change from 6 months ago.  But whenever I feel bad, I always make sure I rule out thyroid medication issues first.
> 
> Anyway, not sure what kind of mental situation I've gotten myself into but it's not pretty.  I really hope it goes away so I can fully enjoy this trip.
> 
> As for the trip, I'm just grabbing some quick dinner ressies but can change at any time.  If you've got any must-do ideas, let me know.  So far I've got:
> Citrico's (my son's absolute favorite--I could do without at this point)
> Tiffins at AK
> Teppan Edo and Epcot (we've never done this one.  I'm not wild about it because I feel like I can do this type of food anywhere)
> Chef Art Smith's Homecomin'
> Raglan Road (we enjoyed this about 10 years ago)
> 
> I have one more night open and I would also considered ditching Teppan Edo so if you have something that wowed you, let me know!


I hope your anxiousness subsides soon.  It's so frustrating to go through!

Here's some of my 2 cents on your dinner reservations:  

We were VERY underimpressed with Teppan Edo.  Actually quite disappointed.  Service was off, food mediocre for the price.  Only thing good about it was we had a table at the window so could see Illuminations.  I would never return.

I'm not a fan of Raglan Road.  Very basic pub fare you can get anywhere at home.

Now, our favorites are to go to Tutto Gusto Wine Cellar in Italy,  Chefs de France, Brown Derby outside lounge, and Paddlefish at Disney Springs.


----------



## Christine

SingingMom said:


> I hope your anxiousness subsides soon.  It's so frustrating to go through!
> 
> Here's some of my 2 cents on your dinner reservations:
> 
> We were VERY underimpressed with Teppan Edo.  Actually quite disappointed.  Service was off, food mediocre for the price.  Only thing good about it was we had a table at the window so could see Illuminations.  I would never return.
> 
> I'm not a fan of Raglan Road.  Very basic pub fare you can get anywhere at home.
> 
> Now, our favorites are to go to Tutto Gusto Wine Cellar in Italy,  Chefs de France, Brown Derby outside lounge, and Paddlefish at Disney Springs.



Thanks for the advice.  I'm definitely working on ditching Teppan Edo!  Also have heard good things about Paddlefish so I'll give that a look.


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## luvmarypoppins

Christine - hope the anxious feelings are subsiding. I have stayed at Contemporary twice. 

how are the adr plans going? Chefs de France is my favorite. My cousin liked The Boathouse.

well ds1 moved into his house. Dh took his mattress over. Dh said the house needs work, is strangely constructed and he would have never bought it, sigh. He just told me that and not ds.

this week end is the bachelor party. They might go deep sea fishing and then to the Poconnos for white water rafting, paintball and some lake/beach

My neighbors dd danced in the main street disney parade the other week.She posted the video online. Fun!i

hope everyone is enjoying the summer.


----------



## Christine

Hi LMP.  Still having horrible anxiety or *something.*  My GP is on vacation and I don't want to bother with the NP for this.  Regular stuff is fine, this is just too weird.

Anyway, I'm working on ADRs.  So far I have Chef Art's Homecomin', Citricos, Tiffin's, Teppan Edo (will probably drop this one), and Raglan Road.  Not much choice out there for ADRs at this late date and my son has seafood allergies so we are a bit limited.  I am getting excited for the trip.


----------



## luvmarypoppins

Hi peeps!
this is going to be a summer to remember! 
today I was going to make a nice salad for lunch. I get a plate out of the dishwasher, reach over to put it on the table and catch my leg on the corner. Blood everywhere. I call my dh. I am applying pressure. Ds 3 comes home. I didn't call him Dh did. He was at the beach. Ds3 says we are going to urgent care, it's bad.

urgent care tried to stitch it. No luck. Go to er. Wait 3 hours. D's is now working in er for overtime money. Dr.says I am a mess and stitches me up. Said no guarantees and I might need a skin graft, gheesh.

Yup, say some prayers!


----------



## Christine

My goodness, was that a really sharp corner or what?  Hope it heals up properly.

I'm leaving for my Disney trip tomorrow morning (around 4AM) and we are driving straight through.  I think I'm mentally ready. 

I've had so much anxiety and feeling like I can't get a deep breath (due to anxiety I assume).  I've been to a few doctors who have ruled everything out and my breathing issue does seem to have calmed down. I guess I've just been really stressed.  I hope this vacation helps, although it won't be restful.  But I'm looking forward to it.


----------



## macraven

_Yikes LMP that was an ordeal!

Good thing your son was called home and off to get medical treatment

Praying it all works out and heals without the surgery and skin grafts


Christine I pray you have a safe drive down
And you can sleep most of the way on the car ride

I hear you about stress.

It is so difficult to handle and no matter who all says anxieties can be avoided, they are wrong 

Anxieties are a real bear to deal with and I hope you can relax on the vacation and have peace with everything

Sending you _


----------



## Haimia

*Wow, that really was a sharp corner, LMP.  Here's hoping all heals well!
Christine, good luck with the drive and trip.  Hopefully, even though busy, the trip will bring some peace!*


----------



## Christine

Hi everyone.  Well, we made it down here in 12.5 hours which was pretty good considering we stopped several times.  Not a stitch of traffic.

It's super crowded here.  Went to Universal today which was dreadful. I really don't do well with the heat in this park...atl all.  Always feel like I'm going to be sick.  The last time I went was MANY years ago and I had to leave early due to the heat (Disney parks I seem to be okay in).  In 2012 I didn't go but just dropped off the kids.  I had not seen Harry Potter so I went this year. Harry Potter stuff was okay.  I've just decided I really dislike Universal.  I won't ever go there again.  

Just sitting around waiting to go out dinner.  Tomorrow we check out of our off-site hotel and head over to Disney.


----------



## macraven

_Great you had no traffic and made it there safely!

It's hot in my area also.
I either venture out of the house before 10 in the morning or after the sun goes down in the evening due to the heat._


----------



## Christine

Hi everyone!  Well, I got back from Disney last night.  Long drive home. 

No surprise since it's July/August, but it was SOOOO hot and I was not used to it.  Generally before going to Disney I will "train" before I go.  Build up my walking and fitness as well as spend a lot of time outdoors.  Couldn't do that this year and I paid the price.  I was so out of shape and my feet were just killing me.  Took until my fourth day there to get the right combination of sneakers, inserts/insoles, socks and bandaids to stop the pain.  I sweat so much that I think I got some sort of rash on my face.  One day, at DHS, I just had to leave early.  Spent well over an hour in the brutal sun waiting on Slinky Dog Dash and just really couldn't recover.  I ended up spending more time in the parks at night and that was a blessing.

All our food was really good with the exception of Spice Road Table.  I had cancelled this when we got there but then my DS was really wanting to try it.  Just so happened right about the time we were walking by a massive lightning/rain storm started so we walked in and had dinner during the whole storm.  It's also not a good place for a person with a nut allergy (that's my son) so it was just a big letdown.  I can get that type of food at home and it's so much better.  Heck, my grocery store sells better baklava.

We really enjoyed everything else.  I enjoyed staying at the Contemporary too.  I would do that again.  Wasn't a fan of Disney busses (my first time) and doing the parks with my dad using the ECV could be a challenge at times with the crowds.  The bus drivers were all very courteous but the amount of time to load him up was kind of agonizing and we were getting some "stares" for sure.  

Got to right Avatar FoP twice but had to go back to Animal Kingdom twice right before closing to get that accomplished.  

Hope everyone is doing well!


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## macraven

_Glad you arrived home safely.

Yup, start training for the next trip to the motherland two months out.
It is hard on the feet and the back and hips with all day walking and standing in lines.

I'm starting my yearly walking routine this week as I go end of September to Orlando.

Hope all are doing fine._


----------



## Christine

macraven said:


> _Glad you arrived home safely.
> 
> Yup, start training for the next trip to the motherland two months out.
> It is hard on the feet and the back and hips with all day walking and standing in lines.
> 
> I'm starting my yearly walking routine this week as I go end of September to Orlando.
> 
> Hope all are doing fine._



Yes, it's l like training for a marathon!  I think the worst part is that I'm an office worker.  The AC in my office is SO cold that I have to wear heavy sweaters all day.  It's kept at about 69 degrees.  This does not do me any favors when I have to be out in the heat, but there's not much I can do about it.


----------



## luvmarypoppins

Halmla and Macraven - thanks for the good wishes.

Tomm. I get the stitches out. There is still a little blood when the bandage is changed so I dont think the wound has completely healed. The next day dh leaves for 10 days to the west coast then the rehearsal dinner is the 19th and the wedding is the 26th.

Christine - sounds like your trip went well. I would like to try Homecomin one day too. I know some people have no patience waiting for the ecv loads. I get the stares too when I ask for the ramp for the wheelchair. I was thinking of trying Spice Road someday but now I think I will wait. I like english breakfast tea too!


----------



## Christine

luvmarypoppins said:


> Halmla and Macraven - thanks for the good wishes.
> 
> Tomm. I get the stitches out. There is still a little blood when the bandage is changed so I dont think the wound has completely healed. The next day dh leaves for 10 days to the west coast then the rehearsal dinner is the 19th and the wedding is the 26th.
> 
> Christine - sounds like your trip went well. I would like to try Homecomin one day too. I know some people have no patience waiting for the ecv loads. I get the stares too when I ask for the ramp for the wheelchair. I was thinking of trying Spice Road someday but now I think I will wait. I like english breakfast tea too!



Yeah, definitely skip Spice Road Table.  Definitely a disappointment. 

As far as the ECV, we did have some REALLY good bus drivers who were out of the bus and putting down the ramp so we never had to say a word.  They were also VERY good at keeping the people in line back and away from the bus so my father could be loaded.  I think one day the bus from the Contemporary had been late anyway, it was hot, and the line was super long and of course my dad and the rest of us were loaded up first.  We definitely felt the daggers shooting in our back!!  Oh well. 

Good luck with the removal of the stitches.  Hopefully it's healed up and it's just bleeding because the stitches are irritating the top layer of the skin.


----------



## luvmarypoppins

Well I got the stitches out. My regular Dr was so rushy. She squats in a dress to take them out. Omg. I said don't you want to sit in a chair? 

the bottom is healed but not the top. I still may have to go to the plastic surgeon she said. Sigh.
she gave me a new mammo script and couldn't find my pulmonary function test results sigh. Then when I start walking it hurts and dh realized she didn't put steri strips back on. After waiting we go back again. She is too rushy and not neat sigh

now my leg hurts more. She told me not to walk or dance alot. It will take a while to heal. The leg is still swollen from internal trauma she said.


----------



## Haimia

*Wow, you really did a number on that corner edge you hit!  Sorry for the pain and trauma you are still having with the wound.  Here's hoping it heals up soon!*


----------



## luvmarypoppins

Greetings from the rainforest, well it feels like one here. I think they said the last 11 week ends had rain

ds3 changed the bandage . He took a picture and I saw it.
i am going to the plastic surgeon 2 days before the wedding. Another dr. Who looks young and inexperienced. They said she is the one who agreed to take your case, sigh.

this sun. Is the rehearsal dinner. Not holding my breath that her mom will be there. So sad.

ds2 is packing up. The closing is next week, so only one bird left in the nest lol. 

i am also dealing with a stomach bug. Also my one cousin is not doing well. He has bladder and prostate cancer. I feel bad he is suffering alot. Glad I Sent an email to him. No one in the family communicates. I always have to do it and try to keep the peace. Now I need to tell another cousin.

check in when you can


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## Christine

Happy Friday everyone.  Just got back from the dermatologist.  He was a new one that I waited about 10 weeks to see.  LMP, he was young, but he was really good and nice!  I had a suspicious mole biopsied (hope it's okay) and he removed so small facial and neck bumps (not skin tags) that are age and sun related.  I do have Schamberg's disease which is a capillary problem in the lower legs.  No reason for why and it won't kill me.  I asked if it was age related because it just started last year, but he said any age can get it.  

Also had my endo appointment last week.  That guy is always a pleasure for sure. I hope he never retires!!  All is good there.

Having a huge saga with my brand new car so that's sent me over the edge a bit. It's always something!


----------



## SingingMom

Hope all are well!!  It's been a whirlwind around here.  DD bought a townhouse and I've been back to Florida again to help her pick her finishes - it's new construction!  so exciting.  It's only 3.5 miles further than where she is now so it's a still a super quick commute.  It should be finished in February.  While I was in Florida, my dad was hospitalized with renal failure. Luckily he is doing better and was discharged today.  NEVER a dull moment.


----------



## Christine

SingingMom said:


> Hope all are well!!  It's been a whirlwind around here.  DD bought a townhouse and I've been back to Florida again to help her pick her finishes - it's new construction!  so exciting.  It's only 3.5 miles further than where she is now so it's a still a super quick commute.  It should be finished in February.  While I was in Florida, my dad was hospitalized with renal failure. Luckily he is doing better and was discharged today.  NEVER a dull moment.



Sounds fun on the new townhouse!  It's fun picking stuff out like that especially on a new build.  Hope you dad continues to do well!


----------



## luvmarypoppins

Singing mom - wishing your dad all the best. Sounds like a wonderful place for your dd. Hope she enjoys all the planning.

Christine - Glad the endo visit went well. Hope the car issues get resolved.

We survived the rehearsal and dinner yest. Sadly again future dil"s parents were a no show. My heart breaks for her. We decided if the mom even shows up at the wedding that her and I will just be seated ahead of time. Me due to my mobility issues and her due to her anxiety,  so it seens, issues. 11 at the dinner. Fun and expensive!

ds2 and fdil close on the house today. Dh is supposed to help him move in tomm.


----------



## Christine

Just checking in.  Last Friday I went to a new dermatologist and had some biopsies done.  One of them came back as severe dysplasia so I have to go back and have it removed fully.  It's in a bad place on my back so it's going to be tough keeping my movements small for at least the first of two weeks.  It's always something, isn't it?


----------



## luvmarypoppins

Hi peeps!
Christine - sorry you are dealing with this issue now. Wishing you all the best

happy d ay happy day
Ds2 changed the bandage, showed the pic to his friend the wound care nurse. She said it looks great and should close in 2 weeks so I cancelled the surgeon tomm.

loved looking at my tuxedoed penguins lol! They look awesome


----------



## luvmarypoppins

Just popping in finally

Christine -saw your other post and sorry about the dermatology issues 

where to start? My cousin just called me from Disney. He wanted to know about Christmas and  booking the free dining bounceback. In the meantime I had e mailed him that our other cousin died from bladder and prostate cancer. Those two were best friends but had a falling out. He just said, oh yeah I read it, gotta go to the grand Floridian pool bar for lunch now. I am just .

The wedding was nice. Beautiful weather. Good food. Loved seeing my relatives and friends. Finally met the mom. She def. has issues. I tried to talk to her but the music was too loud and I think she was sadly overmedicated or having some mental health issues.


----------



## Christine

LMP, good to hear the wedding turned out well!  That's awful about your cousin.  That must have been some falling out!

I had my excision surgery this past Wednesday.  I've been teleworking Thursday and Friday in an effort to keep my movements low.  I can't even change the bandage myself and can't sleep well due to where it is.  Every position is uncomfortable.  I've got 6 stitches with 3 internal stitches.  I would hope in the next day or two it will start to feel more normal as it heals.

This too shall pass!


----------



## macraven

Christine said:


> LMP, good to hear the wedding turned out well!  That's awful about your cousin.  That must have been some falling out!
> 
> I had my excision surgery this past Wednesday.  I've been teleworking Thursday and Friday in an effort to keep my movements low.  I can't even change the bandage myself and can't sleep well due to where it is.  Every position is uncomfortable.  I've got 6 stitches with 3 internal stitches.  I would hope in the next day or two it will start to feel more normal as it heals.
> 
> This too shall pass!




_Ouch !

Hope the pain leaves quickly and start to feel more normal_


----------



## luvmarypoppins

Hate typing on the kindle. The next afternoon we took my cousins from Ohio around. I stayed in the car a lot.  It was so hot. Then the next day if you saw the community board you saw about how that little girl died in the hot car. It was in our district. So sad.

the afternoon before the wedding we got test ended after taking ds1 cut up fence back to him  after he dumped it in our backyard. I honestly don't know what goes through his entitled head. No car damage but my back waa sore, Dh yelled at car 1 who hit car 2 who then hit us sigh.

i danced very little once with dh and did a little with ds2. We were both crying.

now Dh is in Massachusetts till tomm, Houston the end of The month and France in Dec.i

ds2 is having fun in his 3 week Hawaiian honeymoon. Ds1 has a new girlfriend and ds3 will be missing the beach lol. He did a great wedding toast.

oh and the thyroid stuff . Blood tests and sonogram on my to do list soon.

feel better Christine.


----------



## luvmarypoppins

Prayers for those in the hurricane path
My sonogram is tues. Yup cancer goes to the front of my mind again.
Our washer is broke, called the repair guy
Ds1 got a call back interview for next week. More money but an hour commute!
cooking Tom m for our church picnic

Christine - how is your back and the new car? Read your neighbor flower thread omg!!


----------



## Christine

luvmarypoppins said:


> Prayers for those in the hurricane path
> My sonogram is tues. Yup cancer goes to the front of my mind again.
> Our washer is broke, called the repair guy
> Ds1 got a call back interview for next week. More money but an hour commute!
> cooking Tom m for our church picnic
> 
> Christine - how is your back and the new car? Read your neighbor flower thread omg!!



The back is doing much better.  I get the stitches out on Wednesday and I can't wait.  Looks to be healing up nicely but still having a little difficulty sleeping due to the location.  Yes, the flowers were an interesting event last weekend!


----------



## SingingMom

Glad to hear everyone is feeling better!   We are still on a day by day decision if Mom & Dad will be cruising with us.  Dad seems to have good days and bad days.  Since we don't have to fly to get to the ship, I think 5 days in the sea air isn't too much even if he does feel a bit ill. I think it will do them good.  

Last night DH and I went to a benefit for the new Flamingo Exhibit at the area zoo with our next door neighbors, complete with Pink outfits and feathers in our hair!  It was a lot of fun.  They had a silent auction and we threw caution to the wind and bid on the best prize and won!  Of course, it's pricey, but we got it under the "value of package" and it's for a good cause.  We have 18 months to take the trip - Oceanfront Fairmont Miramar Hotel in Santa Monica with a Wine Safari tour at Saddlerock Ranch!  Sounds really neat.  DH will be 60 in January, so we will make it his birthday gift!  

I'm heading back to see DD next Saturday for a week.  Very proud of her - she won the Quarterly Award for Fantasyland this week!  So happy her leaders recognize her hard work and commitment!


----------



## macraven

_Good to see you all here 

I go to Orlando on the 26th

Is it too late to start my diet....lol_


----------



## Christine

SingingMom said:


> Glad to hear everyone is feeling better!   We are still on a day by day decision if Mom & Dad will be cruising with us.  Dad seems to have good days and bad days.  Since we don't have to fly to get to the ship, I think 5 days in the sea air isn't too much even if he does feel a bit ill. I think it will do them good.
> 
> Last night DH and I went to a benefit for the new Flamingo Exhibit at the area zoo with our next door neighbors, complete with Pink outfits and feathers in our hair!  It was a lot of fun.  They had a silent auction and we threw caution to the wind and bid on the best prize and won!  Of course, it's pricey, but we got it under the "value of package" and it's for a good cause.  We have 18 months to take the trip - Oceanfront Fairmont Miramar Hotel in Santa Monica with a Wine Safari tour at Saddlerock Ranch!  Sounds really neat.  DH will be 60 in January, so we will make it his birthday gift!
> 
> I'm heading back to see DD next Saturday for a week.  Very proud of her - she won the Quarterly Award for Fantasyland this week!  So happy her leaders recognize her hard work and commitment!



Sounds fun and sounds like a great trip!!!  Can't wait to hear about it.

Congrats to your daughter!! Is she actually working in the parks or more behind the scenes?


----------



## SingingMom

Christine said:


> Sounds fun and sounds like a great trip!!!  Can't wait to hear about it.
> 
> Congrats to your daughter!! Is she actually working in the parks or more behind the scenes?


DD works directly in Fantasyland in Attractions.  She monitors the efficiencies and safety of the attractions in Fantasyland West, is a Facilitator for new cast member Orientations, and is a Trainer for new cast members at Pooh and Tea Cups.


----------



## Christine

SingingMom said:


> DD works directly in Fantasyland in Attractions.  She monitors the efficiencies and safety of the attractions in Fantasyland West, is a Facilitator for new cast member Orientations, and is a Trainer for new cast members at Pooh and Tea Cups.



Cool!  Sounds like a dream job.


----------



## luvmarypoppins

singing mom - have a great trip and that is so great about your d d's job!

macraven - have a great trip too! Of course I want to hear all about the food!

Christine - how is your back?

had the sono and blood tests. The sono gal said she didn 't see anything unusual. Also said I am one of her "regulars". I said - unfortunately yes lol!

Dh leaves for Houston wed. Now d h cousins husband died. He had legionnaires disease.

Next up endo in 2 weeks and mammo when I find the script.


----------



## Christine

LMP--the back is finally doing well.  I don't need a bandage anymore but I'm supposed to have vaseline on it constantly, so at least during the day, I am globbing on the vaseline and putting a bandage/tape over it.  It's looking pretty good all of sudden.  I have 5 more days of restricted activity then I can get back to some form of exercise.


----------



## squeegee

I didn’t realize how long it had been since I checked in here. I’d never even finished my 2015 trip report! I’ll whack myself on the nose with a rolled up newspaper next time I find a newspaper. 

I’ve been up to mostly the same old stuff. Dreaming of Disney world, working, and helping friends plan their trips. 

Thyroid stuff - the doctors tried to kill me in early 2017. My blood sugars were rising, so they put me on metformin. Turns out, that binds thyroid meds, so I went severely hypo but it took them 2 months to figure it out and another month for me to recover. That was fun. 

Took the plunge last month and had a gastric sleeve done. Had to get rid of the diabetes somehow, and the sleep apnea, and the fatty liver, and a host of other problems. Down 25 pounds, and averaging a half pound a day for now. No major complications, thank goodness. When I hit goal (125), I’m going to book a trip, come h*ll ornhih water. 

Glad to see some familiar names still here, and it’s been great to read what everyone’s been up to. I’ll try to be a better DIS-er and check in more often.


----------



## luvmarypoppins

squeegee - good to see you again. Sounds like you have a great plan and are on the way to good health. That must have been scary with that med. Bet your dd must be getting big. I miss Texas. Dh just got back from a business trip to Houston. 

well my endo visit was today. Sono was great. Tg was .15. She said the lab didn't do the right tg test so she is calling them. She only wants to test for tg antibodies since my tg markers are useless.

asked me why I was using the walker. Told her I can't breathe well, had the pft test and primary never discussed it with me. Well low and behold primary dr nurse leaves me a message to call. I love my endo!!! She gets stuff done!

Dh is going to Minnesota next week and then the West coast early November. My food and wine window of opportunity is not much, sigh.


----------



## luvmarypoppins

Oops I typoed. My tsh was .15.


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## squeegee

luvmarypoppins said:


> Oops I typoed. My tsh was .15.



TSH sounds pretty low. Have they made any dosage adjustments? Or is that what they’re aiming for? Mine is kept low because of the cancer thing, but the endo plans on aiming for a more “normal” range later.


----------



## Christine

LMP, my TSH has been running at about .40 for quite some time now.  If I get any lower than that, I really don't feel well.  But my thyroid cancer was fairly low-risk/lazy type so that's why I get a little leeway there.  What is the "pft" test?

squeegee-welcome back!!!  That sounds awful about the metaformin binding to the thyroid stuff.  I had that happen many years ago with oral contraceptives.  My TSH went from it's current low levels up to 8.0 in a matter of 6 weeks.  No matter how much thyroid meds I added, it just wouldn't go down.  It's known that thyroid hormone binds with estrogen (which is why you will need a lower dose in menopause) but it seemed to bind REALLY well in me!  I'm definitely always an odd case when it comes to medication.  My doctor says I have one of those livers that is a slow metabolizer.  People can be slow, normal, high, or ultra.  With a slow metabolizing liver you feel side effects more and drugs stay in your system longer.  It's probably why I don't do well with alcohol.

Good to hear the gastric sleeve is working for you.  Based on your weight loss, it doesn't sound like you were severely overweight.  Do they do that procedure for any amount of weight?  That's awesome to lose .5 lb a day.  I'm struggling to lose .5 in 2 weeks!!  I know what to do to get there, but it's hard to only eat 1400 calories a day.  I guess the sleeve makes that more manageable?


----------



## squeegee

Christine said:


> LMP, my TSH has been running at about .40 for quite some time now.  If I get any lower than that, I really don't feel well.  But my thyroid cancer was fairly low-risk/lazy type so that's why I get a little leeway there.  What is the "pft" test?
> 
> squeegee-welcome back!!!  That sounds awful about the metaformin binding to the thyroid stuff.  I had that happen many years ago with oral contraceptives.  My TSH went from it's current low levels up to 8.0 in a matter of 6 weeks.  No matter how much thyroid meds I added, it just wouldn't go down.  It's known that thyroid hormone binds with estrogen (which is why you will need a lower dose in menopause) but it seemed to bind REALLY well in me!  I'm definitely always an odd case when it comes to medication.  My doctor says I have one of those livers that is a slow metabolizer.  People can be slow, normal, high, or ultra.  With a slow metabolizing liver you feel side effects more and drugs stay in your system longer.  It's probably why I don't do well with alcohol.
> 
> Good to hear the gastric sleeve is working for you.  Based on your weight loss, it doesn't sound like you were severely overweight.  Do they do that procedure for any amount of weight?  That's awesome to lose .5 lb a day.  I'm struggling to lose .5 in 2 weeks!!  I know what to do to get there, but it's hard to only eat 1400 calories a day.  I guess the sleeve makes that more manageable?



My BMI was 37 when I started the process. They require a BMI of 35 WITH weight-related comorbidities or a BMI of 40. 

It’s a tool to help me keep it off long-term, a forced restriction. I’m consuming 400-600 calories a day, and it’s a struggle to eat that much. Have to be sure to get 64 ounces of fluid and 65 grams of protein a day, and it’s tough when you can only manage 2 ounces food at a time. 

I’ve already come off the heart medications, and I’m no longer diabetic. So, for me, it’s about getting rid of the comorbidities, not just being thin. I’ve never cared about being thin, but the sicknesses (on top of having had cancer) were just too much. I’d tried every diet imaginable and just couldn’t keep weight off long term.


----------



## Hook326

Hello! I’m new to this thread and new to thyroid issues. I tried looking at a forum specific to thyroid issues but it got a bit overwhelming as I’m not familiar with all the abbreviations and lingo yet. I was hoping you all might be able to give me some info in a more manageable way if that makes sense 

I went to the dr because I had a lot of signs pointed towards something going on with my thyroid that started approx a month ago. I got an ultrasound last week and it shows my ithsmus slightly enlarged at 6mm and a “largely cystic complex lesion measuring at 12mm”. From what I’ve read that’s considered big and I do feel a lump when I swallow. 

I have a thyroid scan uptake scheduled in a week and a half.

I’m just wondering if anyone has an idea based on their experience on what the normal route is for a situation like mine? Is surgery pretty much a given? I’m not expecting medical advice just experiences. Thank you!


----------



## Christine

Hook326 said:


> Hello! I’m new to this thread and new to thyroid issues. I tried looking at a forum specific to thyroid issues but it got a bit overwhelming as I’m not familiar with all the abbreviations and lingo yet. I was hoping you all might be able to give me some info in a more manageable way if that makes sense
> 
> I went to the dr because I had a lot of signs pointed towards something going on with my thyroid that started approx a month ago. I got an ultrasound last week and it shows my ithsmus slightly enlarged at 6mm and a “largely cystic complex lesion measuring at 12mm”. From what I’ve read that’s considered big and I do feel a lump when I swallow.
> 
> I have a thyroid scan uptake scheduled in a week and a half.
> 
> I’m just wondering if anyone has an idea based on their experience on what the normal route is for a situation like mine? Is surgery pretty much a given? I’m not expecting medical advice just experiences. Thank you!



Welcome!!!  There's a couple of normal scenarios here but generally it could be:

1.  Watch and wait (have an ultrasound annually to see if it continues to enlarge, or 
2.  Have a fine needle biopsy of the cyst and possibly ithsmus (man, that's an awkward word).  

The thyroid uptake scan will tell if the nodules are hot or cold functioning.  Cold functioning is normally indicative of a cancer.  Honestly, I didn't realize they were still relying on uptake scans (I had one but that was back in the 1990s).

I think most thyroid experts would advice for #2 considering the size of your cyst.  Doesn't mean it's cancer but benign or not, who wants a 1 cm. lump in their neck.  

My best friend had a huge lump that came up suddenly.  They watch it for a few months.  Honestly it was just disturbing to look at.  She had a biopsy first which came back clear; however, due to it's size (and she had other smaller lumps), the doctor decided on a full thyroidectomy.  All her lumps were benign but they found some "micro" thyroid cancer in the gland so it was just as well she had the gland out.  

Feel free to ask more questions and post back when you get farther along.  Also, if you reply to this thread, be sure to quote this response so I'll get an alert.  This forum is a little slow moving so I might not check it for a few days so an alert will clue me in to come back.


----------



## siren0119

Just found this thread but don't have time to read through all the past posts yet!

I have Hashimotos Hypothyroidism, diagnosed about a year after my youngest son was born (he's now 9). But looking back over my medical records and stuff I had been dealing with prior to diagnosis, my MD and I figure things had been going south for almost 10 years before that. It's so underdiagnosed because symptoms mirror so many other things. My pet symptoms are digestive issues, hair loss, heart palpitations and fibromyalgia-like pain. 

Because my hypo is due to an autoimmune disorder, my TSH needs to be on the low end of normal for me to be asymptomatic - another reason it took so long to diagnose. My old PCP would see my TSH in a "normal" range and just call it good, even though I was on the upper end of normal and still feeling like crap. My new doctor doesn't just go by test results but asks how I'm feeling, what I'm noticing and takes into account that labs only tell part of the story. 

For now, my thyroid isn't too rigid, and if I keep my diet fairly free of grains and complex carbs my body is a lot less reactive and the immune response seems to be suppressed. No surgery needed yet (knock wood).  Every day is a learning experience!


----------



## Hook326

Christine said:


> Welcome!!!  There's a couple of normal scenarios here but generally it could be:
> 
> 1.  Watch and wait (have an ultrasound annually to see if it continues to enlarge, or
> 2.  Have a fine needle biopsy of the cyst and possibly ithsmus (man, that's an awkward word).
> 
> The thyroid uptake scan will tell if the nodules are hot or cold functioning.  Cold functioning is normally indicative of a cancer.  Honestly, I didn't realize they were still relying on uptake scans (I had one but that was back in the 1990s).
> 
> I think most thyroid experts would advice for #2 considering the size of your cyst.  Doesn't mean it's cancer but benign or not, who wants a 1 cm. lump in their neck.
> 
> My best friend had a huge lump that came up suddenly.  They watch it for a few months.  Honestly it was just disturbing to look at.  She had a biopsy first which came back clear; however, due to it's size (and she had other smaller lumps), the doctor decided on a full thyroidectomy.  All her lumps were benign but they found some "micro" thyroid cancer in the gland so it was just as well she had the gland out.
> 
> Feel free to ask more questions and post back when you get farther along.  Also, if you reply to this thread, be sure to quote this response so I'll get an alert.  This forum is a little slow moving so I might not check it for a few days so an alert will clue me in to come back.



Thank you for your response! I figured a biopsy would be coming at some point. In your opinion, is the thyroid uptake scan outdated? My cyst doesn’t protrude (yet?), I think it’s more pushing inward because I can feel it when swallowing. To remove a cyst is the only option to remove the thyroid too? They can’t just take out the cyst? Or was your friend’s dr’s concern it could be cancerous? 

I feel like a fish out of water with this so I really appreciate your responses.


----------



## squeegee

Hook326 said:


> Thank you for your response! I figured a biopsy would be coming at some point. In your opinion, is the thyroid uptake scan outdated? My cyst doesn’t protrude (yet?), I think it’s more pushing inward because I can feel it when swallowing. To remove a cyst is the only option to remove the thyroid too? They can’t just take out the cyst? Or was your friend’s dr’s concern it could be cancerous?
> 
> I feel like a fish out of water with this so I really appreciate your responses.



I’ve been dealing with thyroid cancer surgeries and treatments for the last seven years and didn’t have an “uptake” scan until after total thyroidectomy and iodine radiation, to verify they got it all out. They hopped straight to FNA/biopsy after the ultrasound. 

I know biopsy sounds scary - but it’s actually not all that painful and only takes a few seconds. Positioning your head properly is usually the most uncomfortable part (for me, anyway). 

As far as I know, they do not remove just a cyst. They can remove just half the thyroid in some cases, though, and some folks can get by with just the half left over. 

Keep in mind, too, that the vast majority of nodules/cysts are benign and it’s pretty normal for folks to have them, especially as we age.


----------



## Christine

Hook326 said:


> Thank you for your response! I figured a biopsy would be coming at some point. In your opinion, is the thyroid uptake scan outdated? My cyst doesn’t protrude (yet?), I think it’s more pushing inward because I can feel it when swallowing. To remove a cyst is the only option to remove the thyroid too? They can’t just take out the cyst? Or was your friend’s dr’s concern it could be cancerous?
> 
> I feel like a fish out of water with this so I really appreciate your responses.



I believe the uptake scan is outdated and unnecessary but it was a matter of course in the 1990s.  Are you seeing an endocrinologist who specializes in thyroid issues?

As squeegee said, you don't need a total thyroidectomy, but if you have multiple cysts (as my friend did) they generally remove the whole thing or you will just end up having more trouble down the road.  Also, if they have any suspicion it's cancer, they like to remove the whole thing.  

I had all my stuff done in 1994.  Thyroid cancer was much more rare then and no internet to learn anything.  Mine had a very rare chance of being cancerous, so I only had a lobectomy.  Even on the operating table, the biopsy came back benign.  After the full pathology was done; however, I got the cancer diagnosis.  I then had to go back in for surgery 2 weeks later to get the rest of the gland removed.  I had no more cysts in there (although maybe the early signs of one) but the remaining half also had small sprinkles of cancerous cells in it.  So had I not had the whole thing out, this would have gotten me later.

Thyroid biopsies, unfortunately, are funny things.  If a get a biopsy that is positive for cancer cells, you can consider that to be a good biopsy.  If the biopsy comes back clear, it's actually not 100% guaranteed that you are clear.  Kind of stinks, but that that's how it is.


----------



## Hook326

squeegee said:


> I’ve been dealing with thyroid cancer surgeries and treatments for the last seven years and didn’t have an “uptake” scan until after total thyroidectomy and iodine radiation, to verify they got it all out. They hopped straight to FNA/biopsy after the ultrasound.
> 
> I know biopsy sounds scary - but it’s actually not all that painful and only takes a few seconds. Positioning your head properly is usually the most uncomfortable part (for me, anyway).
> 
> As far as I know, they do not remove just a cyst. They can remove just half the thyroid in some cases, though, and some folks can get by with just the half left over.
> 
> Keep in mind, too, that the vast majority of nodules/cysts are benign and it’s pretty normal for folks to have them, especially as we age.





Christine said:


> I believe the uptake scan is outdated and unnecessary but it was a matter of course in the 1990s.  Are you seeing an endocrinologist who specializes in thyroid issues?
> 
> As squeegee said, you don't need a total thyroidectomy, but if you have multiple cysts (as my friend did) they generally remove the whole thing or you will just end up having more trouble down the road.  Also, if they have any suspicion it's cancer, they like to remove the whole thing.
> 
> I had all my stuff done in 1994.  Thyroid cancer was much more rare then and no internet to learn anything.  Mine had a very rare chance of being cancerous, so I only had a lobectomy.  Even on the operating table, the biopsy came back benign.  After the full pathology was done; however, I got the cancer diagnosis.  I then had to go back in for surgery 2 weeks later to get the rest of the gland removed.  I had no more cysts in there (although maybe the early signs of one) but the remaining half also had small sprinkles of cancerous cells in it.  So had I not had the whole thing out, this would have gotten me later.
> 
> Thyroid biopsies, unfortunately, are funny things.  If a get a biopsy that is positive for cancer cells, you can consider that to be a good biopsy.  If the biopsy comes back clear, it's actually not 100% guaranteed that you are clear.  Kind of stinks, but that that's how it is.



Thank you both for your responses! I’ve been trying to do research to educate myself more. I’m not seeing an endocrinologist yet. I haven’t gotten that referral from my dr yet, I’m not sure why. 

So basically the uptake scan is to see if there is cancer? Tonight I’ve been making a list of endocrinologists and will call tomorrow to see if I can get in without a referral and if they recommend the uptake scan. 

This is quite overwhelming to navigate, I appreciate the help!


----------



## Christine

Hook326 said:


> Thank you both for your responses! I’ve been trying to do research to educate myself more. I’m not seeing an endocrinologist yet. I haven’t gotten that referral from my dr yet, I’m not sure why.
> 
> So basically the uptake scan is to see if there is cancer? Tonight I’ve been making a list of endocrinologists and will call tomorrow to see if I can get in without a referral and if they recommend the uptake scan.
> 
> This is quite overwhelming to navigate, I appreciate the help!



No, the uptake scan really isn't done for cancer.  It used to be that, for some reason, they liked to see how the nodule was functioning.  I just don't think there's a need for that sort of information anymore and the radiation used in the scan (while minimal) is unnecessary.  It can also interfere IF you end up having thyroid cancer with the resulting radiation you might need later.  I think that's why I asked if you were seeing an endo because they are more on the cutting edge of thyroid issues where a general practictioner is probably relying on information they learned 20 years ago.  There's been a lot of changes in the past 10 years as to how thyroid nodules are assessed and treated.


----------



## luvmarypoppins

squeegee said:


> TSH sounds pretty low. Have they made any dosage adjustments? Or is that what they’re aiming for? Mine is kept low because of the cancer thing, but the endo plans on aiming for a more “normal” range later.



it needs to be close to 0 as 
possible since I have the columnar cell aggressive variant.

Also don't know if you  got a chance to read the past posts but I had a recurrence last year and had to get lymph nodes in my r neck removed. this time I went to one of the top endocrine surgical oncologists in NYC.

Oh and now I am non avid so no more rai for me, sigh.

Sounds like the sleeve is working well for you. That's great!


----------



## luvmarypoppins

siren0119 - welcome. I don't know too much about Hashimotos but I am learning quickly as my new daughter in law has it. Her symptoms and triggers are very similar to yours. 

Hook326 - welcome. Count me in with the rest about ??? The uptake scan. I would go with the fna too.

And in my little thy ca world, sadly one of the rare group members passed away. She had bad lung Mets and has a 3 year old.

New daughter in law was in hosp for  2 days. Lots of testing. No diagnosis, just hashimoto flair and symptoms

Synthroid saga - pick up and see it's the wrong dosage only 6 days, they will call md
2. No call in from md
3. Friday I call md voicemail
4. Mon. Call pharmacy and then md again
5. Call pharmacy today. Yes Dr has called in correct script but now pharmacy out of synthroid


----------



## squeegee

luvmarypoppins said:


> it needs to be close to 0 as
> possible since I have the columnar cell aggressive variant.
> 
> Also don't know if you  got a chance to read the past posts but I had a recurrence last year and had to get lymph nodes in my r neck removed. this time I went to one of the top endocrine surgical oncologists in NYC.
> 
> Oh and now I am non avid so no more rai for me, sigh.
> 
> Sounds like the sleeve is working well for you. That's great!



I hadnt read too far back, no. So sorry to hear you had a recurrence and the neck dissection. Mine was the left side, modified radical, and it was a much harder thing to recover from than the thyroidectomy. *hugs*


----------



## SingingMom

I'm going to sound like a spoiled brat - but I'm getting ready to leave for our Bermuda cruise tomorrow morning and I'm not feeling the "magic". 
 This trip was supposed to be DH & my gift to my parents for their 80th birthdays.  Sails out of NYC, so no need to have them fly - only 5 nights and easy stop in Bermuda.  Mom has mobility problems and Dad has bladder cancer, so this would be the only way they could travel - with us keeping an eye on them.  They were SO EXCITED. ….  

Two months ago, Dad had a 10 day hospital stay due to renal failure, but he pulled out of it, albeit frail.  They were still looking forward to the trip.  But, on Monday, he had a rough time at the doctor changing his tubing, and he is pretty weak.  He got on the phone & burst into tears that they were going to have to cancel.  I'm heartbroken.  First of all - my dad is not the type of person to cry, so that in of itself killed me.  But they are SO DISAPPOINTED that they are disappointing US.     I have insurance, so I'm not concerned about the money.  And let's face it, it is what it is.  But the fact that they were looking forward to this special trip and now can't enjoy it makes me SO SAD.   

DH & I are still going, because I don't want to confuse matters in trying to get both reservations refunded, etc.  Hubby could use the rest since he's been working so hard.  Our 32nd anniversary was this week, so we are trying to look at this as an anniversary trip instead.

Still..... I'm so sad.


----------



## squeegee

SingingMom said:


> I'm going to sound like a spoiled brat - but I'm getting ready to leave for our Bermuda cruise tomorrow morning and I'm not feeling the "magic".
> This trip was supposed to be DH & my gift to my parents for their 80th birthdays.  Sails out of NYC, so no need to have them fly - only 5 nights and easy stop in Bermuda.  Mom has mobility problems and Dad has bladder cancer, so this would be the only way they could travel - with us keeping an eye on them.  They were SO EXCITED. ….
> 
> Two months ago, Dad had a 10 day hospital stay due to renal failure, but he pulled out of it, albeit frail.  They were still looking forward to the trip.  But, on Monday, he had a rough time at the doctor changing his tubing, and he is pretty weak.  He got on the phone & burst into tears that they were going to have to cancel.  I'm heartbroken.  First of all - my dad is not the type of person to cry, so that in of itself killed me.  But they are SO DISAPPOINTED that they are disappointing US.     I have insurance, so I'm not concerned about the money.  And let's face it, it is what it is.  But the fact that they were looking forward to this special trip and now can't enjoy it makes me SO SAD.
> 
> DH & I are still going, because I don't want to confuse matters in trying to get both reservations refunded, etc.  Hubby could use the rest since he's been working so hard.  Our 32nd anniversary was this week, so we are trying to look at this as an anniversary trip instead.
> 
> Still..... I'm so sad.



Not at all sounding like a spoiled brat. I’d be sad, too. I think anyone would. It’s always disappointing when a much-anticipated event doesn’t come together as it should. I hope you’re able to get some rest and stress-relief while on your trip.


----------



## Christine

SingingMom, that's really tough and no, you don't sound like a spoiled brat at all.  

I'm sure it's devastating for your parents and no one likes to face their mortality in that way so I'm sure that was also playing on your dad's mind.  I hope you can still enjoy your trip.


----------



## Haimia

*So sorry for the disappointment.  Perhaps you can plan another short trip or activity when you return that your parents could enjoy - driving through the countryside this time of year is lovely?!  Stopping at a new or favorite restaurant?!  Staying at a bed and breakfast?!

Try to enjoy yourselves.  It is your anniversary, after all!  I'm sure part of your parents' disappointment is in disappointing you for being unable to go.  Wishing you the best on your trip!*


----------



## macraven

_SingingMom, sending you lots of prayers and hugs.

I know you are sad and upset of your dad's health and change of plans.


Do the cruise as an anniversary trip for you and your husband.
Act like a couple of newlyweds and have a fun time!_


----------



## luvmarypoppins

singing mom - sorry to hear that things didn't go as planned with your parents for the cruise. Hoping you can celebrate their birthdays with another event that brings them joy. 

Try to enjoy the cruise with your dh. I am sure it will be refreshing and relaxing although in a different kind of way.

And in the Life is too short department, ds2 father in law passed away suddenly today. The services start tomm. Night with a mass thursday. Everyone is beyond devastated. Prayers appreciated.

Oh and I will finally get my correct synthroid dose script. Mystery solved. Endo wrote wrong dosage frequency in her clinical note sigh. That is a first.


----------



## macraven

_So sorry to read about your son’s fil

Prayers and hugs for the entire family_


----------



## Hook326

Christine said:


> No, the uptake scan really isn't done for cancer.  It used to be that, for some reason, they liked to see how the nodule was functioning.  I just don't think there's a need for that sort of information anymore and the radiation used in the scan (while minimal) is unnecessary.  It can also interfere IF you end up having thyroid cancer with the resulting radiation you might need later.  I think that's why I asked if you were seeing an endo because they are more on the cutting edge of thyroid issues where a general practictioner is probably relying on information they learned 20 years ago.  There's been a lot of changes in the past 10 years as to how thyroid nodules are assessed and treated.



Sorry for the delay in responding but thank you again for your response. I put myself in high gear and started researching endocrinologists in my area and calling them to get info. I then picked one and started harassing my primary’s office about a referral. It finally was done today so the endo is supposed to review in 24-48 hours to schedule. I canceled the thyroid uptake and scan based on you guys, the endos offices I called and several websites. Swallowing is getting worse so I hope they can fit me in soon. I’m coughing too. All getting annoying, I just want to get it out/shrunk whatever.


----------



## Christine

Hook326 said:


> Sorry for the delay in responding but thank you again for your response. I put myself in high gear and started researching endocrinologists in my area and calling them to get info. I then picked one and started harassing my primary’s office about a referral. It finally was done today so the endo is supposed to review in 24-48 hours to schedule. I canceled the thyroid uptake and scan based on you guys, the endos offices I called and several websites. Swallowing is getting worse so I hope they can fit me in soon. I’m coughing too. All getting annoying, I just want to get it out/shrunk whatever.



I think that was probably a good move.  The endo is the best place to be and they will know the best surgeons to send you to.  Hopefully you won't have to wait long.  I know some endo offices can be pretty backed up for new patients.  Mine has a 3-4 month wait.


----------



## Hook326

Christine said:


> I think that was probably a good move.  The endo is the best place to be and they will know the best surgeons to send you to.  Hopefully you won't have to wait long.  I know some endo offices can be pretty backed up for new patients.  Mine has a 3-4 month wait.



The endocrinologist I was referred to also has that long of a wait for new clients except I guess cases like mine. They just called and scheduled me for next Tuesday. I was so relieved I cried. Thank you again for your and other posters’ direction. It helped a lot.


----------



## SingingMom

Thank you for all the warm wishes.  DH and I are just back from our cruise.  In the scheme of things, it was best my parents weren't with us - I think there would have been too much standing for both of them.  The weather the first two days was on the nasty side, so they would not have enjoyed the deck or veranda like I had hoped.  They also felt relieved about their decision as Dad still wasn't feeling well all week.

DH and I had a lovely time.  Bermuda is my favorite place on earth and we had beautiful weather while in port.  We went to Horseshoe Bay the first day and I was in the water for about 20 minutes !  We took a side trip to Swizzle Inn because it's a tradition and the following day took the ferry to Hamilton to shop on Front Street and do our own little mini pub crawl!   Food was wonderful on the ship, service excellent, entertainment top notch.  One of my favorite things was a presentation and Q & A with one of the actresses in the shows who has been on Broadway.  We really enjoyed meeting her and chatting with her afterwards.
We did the champagne tasting (my favorite) and a Mixology class, and had Brunch at Palo on our final sea day.  That meal was FABULOUS!  I'm longing for another dish of artichoke ravioli!!!  

We are going to ask Mom & Dad if there is anything particular they might need for the house or yard, or if they'd like to have a special dinner at Ruth's Chris for the immediate family and we'll pick up the tab.  I'll let you know what they decide!  lol


----------



## luvmarypoppins

Hook326 - wishing you all the best with your appointment on Tues. Let us know how things go.

singing mom - Glad you had a nice time on the cruise. Hope your dad feels better soon. 

Christine - saw your post on the bc thread. I remember her name but it was a while ago. Sorry to hear that.

It has been such a sad week. We went to dil's dad's 2 viewing days and then the mass. They held up the final service for us. It took us 1 hr. 20 min. To get there. Lots of tears. Dil was daddy's girl. She told dh  - you are my dad now. Heart breaking. Now they have to work out so much stuff.

Then we found out a sweet lady from our church died. She moved to Maryland but the viewing is tues. Night back here and we are going. She cooked food for us during my first cancer surgery.

and when it couldn"t get any worse, ds2 said he saw on facebook that one of dh uncle's grand daughter s wrote on facebook, goodbye grandpa. So it appears his uncle may have died. He was in his 90s. He lived in Washington state. My head is spinning.


----------



## luvmarypoppins

Hook326 - How did your endo visit go? I hope you liked the dr. And that there is a good plan put in place for you.

Too much sadness here. Went to that lady's viewing. Saw some old friends. Then dh talked to his cousin. Yes sadly his uncle died. No services. I know dh will miss visiting him. Then ds1 saw someone I knew in a store. She said tell your mom K. (Her son in law) has cancer. I worked with him on the school board. So sad 

ds3 quit the Neuro ICU. He said it was boring, he had issues with the boss and the people were half dead. So he is going back to his old floor.

Dh said we could go to disne y after thanksgiving. Only bad thing 2 of the candlelight narrators are Whoopi and Neal Patrick and we have seen them both.


----------



## SingingMom

luvmarypoppins said:


> Dh said we could go to disne y after thanksgiving. Only bad thing 2 of the candlelight narrators are Whoopi and Neal Patrick and we have seen them both.



We are headed down the week of Thanksgiving because DD has to work.  Our tickets for Candlelight are Thanksgiving Sunday, which is Helen Hunt.  I'm not overly excited about her. lol     DD wants me to stay and see John Stamos, but there are too many things going on at home that week for me to stay longer.  I'd really enjoy hearing him narrate!


----------



## luvmarypoppins

singing mom - hope you have a great holiday trip visiting your dd.

and speaking of trips...finally booked ours for Nov. 28- Dec. 4. We are staying 2 nights Swan, 2 nights Dolphin, then last 2 nights at Swan again. One night was sold out at the Swan. Not to mention the room prices are outrageous!

Got what I could for adr's. Chefs, Cape May for dh crab coma, Marrakech for the Candlelight with Robby Benson, Liberty Tree before MVMCP. Grand Floridian Cafe because I want to see the gingerbread house and One day open yet.

Check in when you can. A dusting of snow here tomm. I think eh and I should be snowbirds when he retires.


----------



## macraven

_LMP sounds like a lovely trip you have planned 
I’m sure you will have a fine vacation 

Watching the weather channel just reaffirms it was good we moved to Georgia than staying in the North

No snow but should get rain later tonight sometime _


----------



## SingingMom

luvmarypoppins said:


> singing mom - hope you have a great holiday trip visiting your dd.
> 
> and speaking of trips...finally booked ours for Nov. 28- Dec. 4. We are staying 2 nights Swan, 2 nights Dolphin, then last 2 nights at Swan again. One night was sold out at the Swan. Not to mention the room prices are outrageous!
> 
> Got what I could for adr's. Chefs, Cape May for dh crab coma, Marrakech for the Candlelight with Robby Benson, Liberty Tree before MVMCP. Grand Floridian Cafe because I want to see the gingerbread house and One day open yet.
> 
> Check in when you can. A dusting of snow here tomm. I think eh and I should be snowbirds when he retires.



Snowing here.  It's dark and cold.  I hate it.  I can't wait until DH retires so we can move to Florida!

Excited to be visiting on Monday - DH hasn't been to see DD in a while.  She's excited for him to see her townhouse model!  We are jammed packed for the week - three nights at Coronado then the rest with DD.  Monday evening  catching up with our CM friends, Tuesday townhouse tour and Studios to show DH Toy Story Land, Wednesday DD is off so full day at MK and Liberty Tree with her friend to celebrate Thanksgiving.  She's working Thurs, Fri, & Sat, so we'll have some free time until she gets out of work.  Then Thurs evening blue zoo (fish for Thanksgiving lol) Fri dinner in Disney Springs with another of her friends, Saturday evening mass and probably take out, then Sunday DD took off so we have late lunch at Chefs de France & Candlelight Processional - meeting up with our CM friend from Disneyland and her family for those events.  Monday back home.  ;(


----------



## j2thomason

I'm SO happy to have found this thread! My daughter & I were driving home from a week at WDW to Alabama on 9/8 when I had to pull off the road and call an ambulance. I thought I was having a heart attack; my heart was racing, my face was tingly and I was dizzy. After spending a couple of days in the hospital in Ocala they put me on beta blockers (metoprolol) sent me home to follow up with a cardiologist. While I was in Ocala they ran a head CT, an echocardiogram and a chemical stress test. After all of that testing, they didn't find anything alarming other than my thyroid levels were high (6.34) along with my cholesterol. After I got home, my cardiologist had me wear a holtor monitor for 24 hours, then a patch monitor for a month. He finally checked my thyroid TSH levels on 10/1 and they were 10.53. He had me follow up with my primary doctor who put me on levothyroxine .125 about 3 weeks ago. I'm starting to see some improvement. My heart rate had been spiking anytime I stood up for more than a few seconds. I was also continuing to have dizziness and tingling in my face. That is also easing up. I teach computer lab K-3 three days a week & work with 200+ students a day, standing almost all day, but have been unable to return to work because of my ongoing symptoms. My daughter and I have APs and were supposed to return to WDW 11/24-30, but I canceled that trip. I just don't think I can do Disney with this going on. I'm trying to get in to see an endocrinologist, but the earliest appointment I could get was 1/29. Apparently, there are not enough endocrinologists where I live. I have not read through the whole thread, but I plan to do that this week. Any suggestions or tips would be appreciated.


----------



## luvmarypoppins

j2thomason - welcome. Christine is our thyroid expert.

It sounds like you have very hyper symptoms. I am assuming the ct showed no thyroid problems. Did they rule out graves disease?

I think it takes 6 weeks for the Levo to start working because of the half life. If you have to wait that long for your endo appt. I would be asking your pcp to do 6 week blood draws as your tsh should be going down. Maybe even 4 weeks. It does take a while to get the dosage right through trial and error. Wishing you all the best.

To all - wishing you a blessed Thanksgiving. Thankful for all of you!!


----------



## Christine

Hello everyone and Happy Thanksgiving.  I've been super busy at work so haven't stopped by here in awhile.  Sounds like there's a few great trips planned!

My parents just bought a house in Florida a few weeks ago.  They are going to move to The Villages.  They have visited many over-55 communities and they LOVED it there.  I'm not wild about the location (seems to be in the middle of nowhere) but it's not about me and they really like all the amenities and the 'socialness' of the place.  So I expect I'll be visiting Florida a few times a year and can hopefully make some short trips over to Disney (about an hour's drive).

j2thomason--welcome and sorry to hear about your symptoms.  Based on your bloodwork, you are pretty HYPO thyroid (slow, low thyroid).  It does perplex me that your symptoms seem to match HYPERthyroidism which would give you a rapid heart rate.  The face tingling and dizziness could be hypo; however, you don't seem to be significantly low.  But having your thyroid not produce enough hormone can certainly throw all of your other symptoms out of whack especially as you get older and can most certainly affect the electrical impulses in the cardiac area.

An endocrinologist is definitely the right place to be to sort this out.  No area has enough endocrinologists!!  I live just outside of DC and it is about a 3-4 month wait to get into the TOP endocrinologists for your first visit.  It's a shame it takes so long because I know you don't feel well and just want some answers. 

Please keep us posted as to how you're feeling.  I'll try to stop by here more often.


----------



## luvmarypoppins

Gather round peeps, enjoy your cheese because I am going to whine
In the what can happen next department
We have not had any heat since saturday.
poor dil has the shingles
the boats to doctor will not be running when we are there. A total pain as we dealt with this in May too. 

the $900 part may get here tomm. Doubtful. Ds1 is taking us to the airport before work so we will be there 2 hours before we really have too, sigh.


----------



## luvmarypoppins

singing mom - how was your trip?

Our trip was pretty bad
They were ripping apart the Swan lobby and parking lot. Busses were at the Dolphin most of our trip.
Epcot boats stopped running before the fireworks. We got the last regular night before they started that.
So cold the first 2 nights
3 drunk ladies sat next to dh at the Candlelight processional. I wasn't impressed with Robby Benson
the Christmas party was fun
The food was good. Last night a server dumped drinks down  hubs back. He was furious but it was a supervisors fault for trying to squeeze by.

now back home. We have heat and dh is going to Massachusetts today.

hope every one is doing well


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## SingingMom

luvmarypoppins said:


> singing mom - how was your trip?
> 
> Our trip was pretty bad
> They were ripping apart the Swan lobby and parking lot. Busses were at the Dolphin most of our trip.
> Epcot boats stopped running before the fireworks. We got the last regular night before they started that.
> So cold the first 2 nights
> 3 drunk ladies sat next to dh at the Candlelight processional. I wasn't impressed with Robby Benson
> the Christmas party was fun
> The food was good. Last night a server dumped drinks down  hubs back. He was furious but it was a supervisors fault for trying to squeeze by.
> 
> now back home. We have heat and dh is going to Massachusetts today.
> 
> hope every one is doing well


Sorry to hear your trip wasn't pleasant! 

We had a busy visit - treated a few of DD's friends to a "family dinner" at various spots - Thanksgiving Eve we ate at Liberty Tree Tavern for a "traditional turkey dinner".  Thanksgiving evening after work we took DD to bluezoo - I love the renovations at the Dolphin.  That used to be our go to spot - hadn't seen it since the renovation.  

We adored the Candlelight Processional - we invited our friend from California and her family - we ate at Chefs de france and then went to the 6:45 show.  Helen Hunt did a decent job.  My favorite still has been Daniel Dae Kim - DD went back the other night to see her childhood heartthrob John Stamos.  She said he was wonderful.  

DH got to see the model of DD's new townhouse to be built.  He loved it.  We are getting excited for them to break ground soon.  

My dad is not doing well.  I'm hoping he feels up to coming to our home for Christmas dinner.  DD will be home for the holidays and we have a very busy week planned.


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## Christine

Hey everyone, it was fun reading about your trips (even though LMP had some bad experiences).  Not much going on here.  I've got my foot back in a walking boot.  I have strained my posterior tibial tendon (first injured it in 2009).  It takes a long time to get under control so I'll be in a boot for a few weeks and I hope it works.  So far no change.  Despite the boot, my DH and I are hitting the mall today.  I am WAY behind on my Christmas shopping for the "kids" and since he's home he can help carry any bags while I drag my 30 lb leg around.  DH had hernia surgery last week.  He's not an office worker so he can't really get back to work but he's okay for shopping!!

My parents are down in their home at The Villages and are enjoying getting things set up.  I think it's been cooler than they thought but I told her she didn't move far enough south to get constant warm weather.  But she's okay with having some seasons.  Just doesn't want anymore ice and snow.

I've got a wedding to go to in Blacksburg, VA next weekend so a 4 hour drive back and forth for that and then I can finally just kick back and get in the holiday mode.


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## macraven

_Hope you and your husband heal quickly _


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## luvmarypoppins

Christine - sorry to hear about your and your Dh medical issues. I hope your foot heals and he heals well post op.

I wrote a dining report if anyone is interested.

got the d's Christmas wishes
ds1 couch or microwave or vacuum
ds2 - vacuum
ds3 - go pro

I usually give money and gift cards. We shall see.

now dh and I are going to another funeral viewing tomm. It's the husband of a church member. The wife is a breast cancer survivor and they have one handicapped dd at home I think. I don't know how this sweet lady will financially be able to keep her houses. It"s so expensive here.


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## luvmarypoppins

Wishing you all a Merry Christmas or whatever you celebrate.

Celebrating ds1 and dil bdays. They are the same age. Going out to dinner sunday.

probably having a brunch Christmas as ds3 has to be at the hospital 3-11.

check in when you can.


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## Christine

Merry Christmas everyone!!

LMP, my son's birthday was yesterday but we are going into DC tonight to have dinner.   My parents are back from Florida so the four of us will meet him and his friends for dinner at a Balkan small plates type of place.  Should be interesting!  My birthday will be next week but usually by them I'm so "over" eating junk that I just sit at home.  I know this sounds weird but I just want some biscuits and gravy from the Cracker Barrel.  So I may just go for breakfast.  My kids will certainly roll their eyes at me!

Today I'm just sitting around waiting for a chair/chaise to be delivered from Wayfair and resting my ankle.  It was starting to really improve and then yesterday, for no reason that I can figure out, it just flared back up again.

Hope everyone is ready for the holidays.


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## SingingMom

Merry Christmas!  Our girl is home and all is right with the world!  We have kept VERY busy this week - saw Mary Poppins yesterday with free tickets from Adventures by Disney.  It was very charming.  I was worried, as the original is my favorite Disney movie. But, they did a good job.  Not better, just nice.

Tomorrow we have Holiday Inn tickets at the Paper Mill Playhouse, Monday I'm singing at 4pm mass and then we will go to our traditional Seafood buffet at the Conservatory of the Madison Hotel.  We've been doing it for years!  Christmas Day we will host my family.  I'm catering in and I paid our fabulous baker friends to make my cookies.  I'd rather write checks then cook this year.  lol
Day after Christmas we will head to Manhattan and a two Broadway show day!  Matinee of "American Son" with our favorite Jeremy Jordan, dinner at Tavern on the Green, and evening performance at Lincoln Center of "My Fair Lady" with Laura Benanti (who is a local girl that we first saw in a community production when she was a teenager!  We try to get to see whatever she is staring in - amazing performer)   Then DD flies back to the craziness of Disney on Thursday night.  
She's in charge of a team for "crowd control" in Magic Kingdom on New Year's Eve.  My petite girl is one tough cookie!  

I'm heading to the Festival of Arts at the end of January because we know two of the performers in the Broadway series and want to support them.  DH will join me in February - fly to Orlando to meet DD and drive up to Jacksonville for nephew's wedding.  In the meantime, ground breaking of DD's new townhouse has begun and they are anticipating a completion date of March 14!!

Peace & Joy to you & yours!  God bless!  Merry Christmas!!


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## Christine

Singing Mom - sounds jam-packed busy but fun!  I hear you on the cookies!


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## macraven

_Hope all here have a merry Christmas with family and friends

Enjoy them and hug them tight !

Family and friends are precious _


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## squeegee

Merry belated Christmas / Hapoy Holidays to everyone. Things here were happily uneventful. 

Still doing well with the gastric sleeve surgery from September 7th. Down over 50 pounds even with the holidays (and I did go a little “off plan,” but not too far). First official round of post-op bloodwork had thyroid levels in their usual ranges (still keeping TSH low-low), and my A1C was in the normal range for the first time in over 5 years! Cholesterol numbers improved too, just gotta get that LDL down 15-20 more points to hit the normal range there. 

Still trying to convince hubs we need to plan a Disney trip (maybe to DisneyLAND this time?) as a reward if I hit the doctor’s Goal for me of 135. Only 16 lbs away. Lol.


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## luvmarypoppins

Happy New Year all!

Christine - hope you had a great birthday. How is the snow there? I joined the reading challenge too. I also do some with other online groups too but some are certain genres or covers etc.

Macraven - words so true!

Squeege - Sounds like things are going well and your numbers are good. Disneyland sounds fun.

Singing mom - hope your dad was be able to be with you and is feeling well.

Cold here but at least no snow. Took ds1 gf out for lunch for her birthday. Next Sunday for ds2. Trying to coordinate a day and time is hard. Ds2 and dil couldn't be at the 
lunch.

My new challenge next week will be dealing with the insurance company. They have changed our prescription plan rules. Now we can only do mail order (never!) or CVS but it's the supply part that is confusing. Should be interesting lol!

Check in when you can everyone!!


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## Christine

Hey LMP!

So I'm sitting here with about 7 inches of snow.  They plows have done a good job so we can get around okay.  In fact, I'm getting my hair cut in a few hours.

My insurance also is mail order only or CVS.  If I am going to take a medicine just ONE time, such as an antibiotic for an illness, I can get that anywhere.  But recurring meds have to be through CVS or mail order.  I actually really like it because, prior to that, my 90 day supply meds (Synthroid) could ONLY be mail ordered which I didn't like.  Now I can get all my 90-day meds at CVS and it's so much more convenient.


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## SingingMom

Same here for mail order or CVS only.  But anything long term MUST be mail order. I personally hate it!  Oh well.

Mom & Dad did not come for Christmas day - just too much for him.  I had my sister & brother with their families and it was sad not to have my parents, but still had a nice time.  First Christmas ever that I used paper products.  What an easy clean up!  lol

Enjoyed our Broadway shows the next day, with stops at Sardi's and Tavern on the Green.  DD was thrilled to say hello to Jeremy Jordan after the show.  Loved My Fair Lady, except it was the understudy's understudy.  Laura Benanti was too sick.   I actually cried.  front row seats - $600 - no Laura.  

DD was in charge of a crowd control team for New Year's Eve in Fantasyland!   God love her!

I'm heading down for the Festival of the Arts - then DH & I are going back two weeks later to meet up with DD and drive to Jax for nephew's wedding.  Still have a California trip to finalize for DH's 60th birthday, which was this past week!


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## j2thomason

I had to cancel my Christmas trip because I was newly diagnosed and my palpitations were just too uncontrollable. I have 2 trips booked for March, one with my husband for a Herbie the Love Bug 50th anniversary and then a solo trip, which I am kind of nervous about. I have done several solo trips before, but not since my hypothyroidism diagnosis.

I got diagnosed in Oct by my primary doctor and have been on levothyroxine since 10/22. I am feeling much better, but I still have occasional palpitations and face flushing. I saw an endo right before Christmas and she tested me for a bunch of stuff I have never heard of and then dismissed me back to my primary doctor. My gynecologist got a referral to another endo that I see in a couple of weeks. I hope that he will test me thoroughly and give some instruction about what I truly need to be doing to have somewhat of a normal life again.


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## Christine

j2thomason said:


> I had to cancel my Christmas trip because I was newly diagnosed and my palpitations were just too uncontrollable. I have 2 trips booked for March, one with my husband for a Herbie the Love Bug 50th anniversary and then a solo trip, which I am kind of nervous about. I have done several solo trips before, but not since my hypothyroidism diagnosis.
> 
> I got diagnosed in Oct by my primary doctor and have been on levothyroxine since 10/22. I am feeling much better, but I still have occasional palpitations and face flushing. I saw an endo right before Christmas and she tested me for a bunch of stuff I have never heard of and then dismissed me back to my primary doctor. My gynecologist got a referral to another endo that I see in a couple of weeks. I hope that he will test me thoroughly and give some instruction about what I truly need to be doing to have somewhat of a normal life again.



Have you had your new thyroid numbers redone.  One of my "signs" that I'm taking too much thyroid medication is facial flushing.  Ears, cheeks.  It's bad.  I remember when that first happened to me.  And it would take forever to go away once it started.


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## luvmarypoppins

Hi everyone!!!  This thread is quiet so popping in to see how everyone is doing.

I am loving our barely snow winter so far!!

Medically I only have the mammo next week and then next month it's blood work and thy sono. Need to work around dh travels to Houston and France. 

Starting to think of a May Disney trip. 

Celebrated dh bday last week. Only ds1 gf couldn't make it. Didn't like it, so cold and ds2 was obnoxious. I yelled at him in the parking lot lol.  We celebrated ds2 bday last month and that place was better.

Biggest news is that ds3 has been tentatively accepted into the family nurse practitioner program. It was so competitive - 500-600 applicant and they only choose 60 students. It's a 3 year program so I don 't know if he can handle working full time. This was the 3rd time he applied. He said they even gave him a surprise test when he walked in for the interview.

Check in when you can.


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## j2thomason

I have had symptoms for years just discounting them as menopause until my daughter and I were driving home from WDW in September and my heart rate was skyrocketing. After 2 days in the hospital in Ocala, seeing a cardiologist for 2 months, my gynecologist, my primary doctor & 2 endocrinologists, I finally found and endocrinologist who ran enough tests to start getting my Hypothyroidism under control. I have an AP and usually take 4-5 trips to Disney every year. I had to cancel my Christmas trip because my palpitations were still unpredictable. I currently have 5 trips to WDW planned this year, 2 in March. I'm praying that I will up to going and have no issues while I'm there. The first trip is actually for a Herbie the Love Bug anniversery and I won't be going to the parks. Then I return for solo trip 2 weeks later. I hope I can make it. I sure have missed Disney!


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## portocall

It's been years since I've been here.  I had my thyroid taken out back in 2013. Since then, it has been a rocky road. Just before the surgery, it seemed we found the magical dose of thyroid medicine.  All the weight gain was coming off from the period where I was undiagnosed and I had energy again.  It was a fantastic few months.  Then the surgery and the ticking scale and mood swings started again.  I think we finally got a handle on it over the summer because weight is slowly starting to slide off again.  It always comes on fast but takes forever to go.  

I see my Endo this week. She is going to fuss at me but that's okay.  I'm going to be in the market for a new one this summer due to a move.  I dread that because I finally found one I like.


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## luvmarypoppins

Jthomason2 - I am glad you found an endo you like. That is so important. I hope you enjoy your trips. Dh and I will prob go in May as usual.

portocall - I hope your endo visit went well and that you find one you like in your new location.

went for the mammo today. The sweet tech said I was last there in 2016. Told her about my cancer recurrence in 2017. She has worked at the place 20 years and remembered me. Said I might need an ultrasound because she couldn't get great pictures on the L side up high. Always something.

my R hip has been bothering me a lot. I will avoid the ortho as long as possible. 

Ds3 did his official acceptance for his seat. In the future he will probably work part time because he will have to do clinical stuff for the degree at off site places.


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## luvmarypoppins

My pcp sent me an email that my mammogram was normal so that is good news!


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## macraven

Great news !


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## luvmarypoppins

macraven - how are you feeling and I bet you are not missing those cold Chicago winters at all!


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## macraven

_I do not miss Chicago winters!
A memory of the past now

Except for having another broken foot, in doing okay_


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## luvmarypoppins

Macraven- oh my! How did that happen? Prayers for a speedy recovery.

 Probably going for the blood tests Saturday since its suppose to be 40. Next up - sonogram. Glad I only have to do this every 6 months. I get too many butterflies thinking about it.

Ds1 and gf came over for a little visit. Nice to see them. I can see her being the next daughter in law.

Hope everyone is well.


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## macraven

_I was barefooted and opened the door and my foot was jammed under it

Our bedroom door has about inch and a half height above the floor 

It will my breat away when I did that

17 months ago broke the same foot in 3 places 
This time foot bones in two different places 

Just call me lucky 
Lol

LMP, hope your tests go smooth and you pass with flying colors !


Sounds like son #1 has a wonderful gf

So sweet he brought her to visit with you
_


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## Christine

Hi everyone. Haven't posted in a long time.  Not doing overly well and I won't bore you with the details.  My thyroid is okay.  I thought it was part of the problem, so lowered my dose thinking it would help.  It didn't, and my TSH went to 3.0.  So now back on my regular dose.

My mother is living in Florida right now at her new home at The Villages.  She was exercising in her home (stretching and working on balance) and lost her footing, fell back and caught herself on her wrist and now has a very complex break in her wrist.  I told her that she should just sit on the couch.  It's safer!!

I'll have to get down to see her soon.  Maybe in April!


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## macraven

Hope your mom heals soon!


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## luvmarypoppins

Christine - sorry to hear that you are not feeling well. Hope you feel your best soon. Prayers for your mom too.

Ds took me for the blood test yest. We had to wait a while. He is off for 6 days so he was fine with it. Next Friday is the sonogram.

ds2 and dil came for a visit sat. Their puppy is not housebroken. Enough said sigh. We puppy sat but we made sure she stayed in the crate while they went to a party with ds3. 

hope everyone is doing well.


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## j2thomason

Well, folks, say a little prayer for me the next few days. I will be trying a solo WDW trip.  I have done several solo trips before, but this will be the first since my Hypothyroidism diagnosis in October. My husband and I actually drove to WDW 3/14-18 for a Herbie the Love Bug anniversary, but we didn't go to the parks; we mostly drove around with the other Herbie cars. My palpitations have been acting up the past few days so that makes me a little nervous. If all else fails I will just order an ecv, but I am really looking forward to walking around in the parks so that is definitely a last resort. I will let you know how it goes. Wish me luck!!


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## luvmarypoppins

j2thomason - I hope you enjoyed your trip. How did you manage? Did you eat any good meals? I always love hearing about the food.

Christine - sorry to hear about your fil. I also hope your mom is healing and you are healing too. 

macraven - how is the foot healing?

Went for the 6th month check up at endo. All is well and God is good! My tsh is .2. I think last time it was .15. She said right where she wants it  less than 0.

I survived the week by myself while dh and d's3 were in France. Happy for dinner visits from the ds. Now dh will be off to Boston soon. This gets weary, sigh.

Need to get some major dental stuff done I am sure $$$
Also looking at disney May16-22. We shall see.


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## j2thomason

luvmarypoppins said:


> j2thomason - I hope you enjoyed your trip. How did you manage? Did you eat any good meals? I always love hearing about the food.



My trip was a success except for one HUGE mistake that I made. I get frappes from McDonald's all the time with no issue. I have been on NO CAFFEINE regimen since my diagnosis. I just wasn't even thinking when I ordered a venti caramel frappuccino from Starbucks at AK. A couple of hours later, while in bed, my heart rate shot up to 149 and stayed in the 130-150 range for 3 hours. My sweet husband stayed on the phone with me the whole time because I was panicking. I stayed in my room all day the following day. So I missed my FOP fast pass

I did try some yummy food while I was there. I am not a fancy eater. I'm a burger, fries and milkshake girl. I had the PB&J tart at Epcot that was delicious. Also, the key lime pie on a stick at DHS in Municiberg was great, too.  

luvmarypoppins maybe I will see you in May! My daughter and I are scheduled to go 5/20-26


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## luvmarypoppins

Christine - thinking of your fil. Saw your other post.

j2 thomason - glad you made it through the trip despite the bumps

macraven- has your foot healed?

singing mom - hope all is well

still working on trip planning. Now the flights we wanted are sold out, sigh. 

Also have one med issue. The pharmacy used the new script and I still had a refill in the old one but the endo wrote the new script differently so I need to look at a calendar and see if I will have enough pills before my 6 month visit. I doubt it. This is the 2nd time the endo maybe messed up my meds. I think I will verbally go over it next time with her.

Happy Spring! Probably having everyone over for Easter dinner.


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## Christine

Hello everyone.  I haven't posted on this thread in awhile.  Been very preoccupied with my FIL's passing.  Lots of paperwork to do every night and we've got a long way to go before the estate is settled.  Most of the responsibility will fall on my DH since we live in the same state as FIL.  His siblings are in Massachusetts.  They've been down all week sorting through the house but they go back home today.  We've got cars to sell, accounts to settle, a house to sell, etc. 

I seem to be doing better.  I haven't said much about it but starting in late January I ended up have diarrhea every day that lasted for about 6 weeks.  I know what started it (something very stressful to me) but the fact that it wouldn't let up just freaked me out and probably made things worse.  I sort of thought I might have been a little hyperthyroid and my endo agreed so I backed off my thyroid meds slightly.  That didn't help the intestinal issues and my TSH ended up getting to 3.0.  I am now back to normal with my TSH.  The intestinal issues have mostly resolved.  I think it is/was a stressed induced attack of colitis and not your typical IBS stuff.  I've seen two gastroenterologists.  The first one I saw was a one I had never gone to before but he was very well rated and very close to my home.  I *loved* is PA who interviewed me for about 20 minutes before he came.  When he came in (for 5 minutes and without my file in hand and wanted to know the whole story all over again) my heart sunk.  He then kind of blew me off, scheduled me for a colonoscopy (which I knew was coming) but I had the feeling that he was not going to pursue the "microscopic colitis" possibility that the PA brought up because he didn't think I had diarrhea "bad enough."  In order to diagnosis it, they have to take about 12 biopsies from different areas of the colon because it can't be seen with the naked eye.  I had no confidence he would do that.

So, I scheduled another gastro appointment with a practice I used for all my previous GI issues.  I haven't been to them since 2011 and I didn't overly want to go because they are about a 40 minute drive from my house (and it's worse in traffic).  It's not fun to have to prep for a colonoscopy and then ride up to their offices with all that pressure and get stuck in rush hour traffic.  But I did like them.  Anyway, I could only get a PA appointment there which even that took awhile.  Fortunately, the PA was able to bring the doctor in during our visit.  So I got a better feeling from the doctor and she agreed she would definitely do the colitis biopsies.  She also wants to do an upper endoscopy since I have a history of issues there.  The other doctor noted that but he wanted to do two separate procedures.  Well, even though I'm mostly better now, I still need the exams (I don't want to do it though!!).  But I could not get in until MAY 31st!!!!  This doctor is apparently popular.  Crazy.  So I now have that looming.

I feel like I've spent the first part of this year in the doctors' offices:  podiatrist, endocrinologist, 8 weeks of physical therapy for my ankle/foot, podiatrist again, labwork, the dentist, gastroenterologist (twice), oh and the dermatologist.  Once the colonoscopy is complete, it will be time for my annual GYN/mammogram appointment.  That should happen in June.  I then get the month of July off (barring any new issues) and it all starts again in August with the endocrinologist.

Whew!  Hopefully one day I will be back to my old self.

My mother's wrist healing is going well.  She has a plate and about 8 pins in her wrist.  She's in the physical therapy phase now and the PT told her she was having AWESOME healing.  Even though my mother is 75, she is very active and takes care of herself so I think having that good baseline helps.  I never did make it down to see her new house with all my problems and she is coming back up here at the end of April/beginning of May to sort out her house here.  Maybe I'll get down there in the fall!

Hope everyone has a great Easter weekend.


----------



## SingingMom

Wow, Christine!  You've been through a LOT!  Hang in there.  Hopefully you will feel better soon!

Been very hectic here - my dad is starting Hospice care at home.  So sad to see him suffer.  My mom is exhausted and heartbroken to know he is dying. All us siblings are in the area, so that helps. 
DH mom is suffering from the start of dementia and only his sister is near her - he and his brother are both out of state.  It's difficult to be of any help.  Hopefully she will be willing to sell her house and move to assisted living.   Getting old is pretty tough.

DD's closing on her new townhouse is next month.  We are making open ended flight plans now - since I'm not sure what my dad's situation will be by then.  If able, I will be staying in Florida for a few weeks to help her get moved and settled.  Hard to be sad at what should be a happy time.    

DH has MRI scheduled for some follow up to his pulmonary embolism history two years ago.  I haven't been to the gyno or cardiologist yet this year - oops....


----------



## Christine

SingingMom said:


> Wow, Christine!  You've been through a LOT!  Hang in there.  Hopefully you will feel better soon!
> 
> Been very hectic here - my dad is starting Hospice care at home.  So sad to see him suffer.  My mom is exhausted and heartbroken to know he is dying. All us siblings are in the area, so that helps.
> DH mom is suffering from the start of dementia and only his sister is near her - he and his brother are both out of state.  It's difficult to be of any help.  Hopefully she will be willing to sell her house and move to assisted living.   Getting old is pretty tough.
> 
> DD's closing on her new townhouse is next month.  We are making open ended flight plans now - since I'm not sure what my dad's situation will be by then.  If able, I will be staying in Florida for a few weeks to help her get moved and settled.  Hard to be sad at what should be a happy time.
> 
> DH has MRI scheduled for some follow up to his pulmonary embolism history two years ago.  I haven't been to the gyno or cardiologist yet this year - oops....



Thanks.  Sounds like you've got your own share of issues with the parents.  It's really hard when they get up there and things like this start to happen.  It's worse when all the relatives are scattered.  We had that last year with my husband's mother.  Dimension, but all the kids lived far away (although her second husband and their child together were close by so she was definitely not along).  But it's a huge burden on the ones close by and the ones far away feel like they want to do more.

Great news on your daughter's townhouse.  Such an exciting time; hope you get to enjoy it all!


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## macraven

_Sending many hugs to singing mom
and Christine _


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## luvmarypoppins

Just checking in to see how everyone is doing.

Christine and singing mom - prayers for both of you with all you have been going through

Going crazy here. We are still dealing with property issues from dh deceased dad so we are going out of state tomm. sigh.

Went for my drivers license yest. What a zoo! Took my walker and got the vip treatment past like 100 people, ptl!!  Did the new one. Needed birth certificate,  marriage certificate, voter notice etc. 

I am still trying to plan a disney trip frugally. Between no tax refund, major dental work needed and $$ for the fil property and more than likely dh getting laid off or fired in Oct. I am watching it. Probably going to use miles and $ for the hotels and miles for half of southwest tickets. 

Take care and check in when you can.


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## j2thomason

luvmarypoppins so sorry to hear about the dental work and your husband's job. Hopefully things will work out for your frugal trip to WDW.

I heard back from my endo this week and he is lowering my levo prescription to .88. It has gone from .125 to .112 to .100 and now .88. I see him again in June with blood draws the week before. I'm gaining weight hand over fist and my joint pain is awful But my other symptoms are lessening. 

On a happier note, my daughter and I are headed back to WDW in a couple of weeks. She hasn't been since September when I first ended up in the hospital in Ocala on the drive home. We both have APs and usually go several times each year. We had to cancel our Christmas trip because I was having too many issues with palpitations. That is normally her birthday trip because she was actually born on Christmas Day, so it was really hard to cancel that trip. She also started a new job which has made it hard for her to scheule a trip. I'm SO happy that we are going together because we have such a great time sharing the magic. I have already told her that I may not be able to keep up my old pace and she may have to do a few things alone while I rest. I will just enjoy that magic a little slower than usual


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## luvmarypoppins

How is everyone doing?

Our out of state trip was exhausting. Dh stressing over driving in the rain, dealing with his cousins and I fell in the bathroom of the hotel room. Black and blue and hurt my knees. The R one still hurts, sigh.

Decided not to take the May trip. Last time we did that was when I had my cancer recurrence 2 years ago.

I am listening to the voice of financial reason here.

Had a nice bbq for mothers day with everyone. Ds2 grilled in the rain.

Going out sun for a pre bday dinner with all of them. Going to the dentist wed. I know they will send me to the endodontist or oral surgeon.

ds3 got voted Preceptor of the Year for his unit and missed Nurse of the Year in his unit by 2 votes.

Check in when you can. Hope all are well.


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## macraven

_Glad you had a lovel Mother’s Day LMP

I get blood work done every 3 minute months and got last report a week ago
Back to the endo at the end of this month

More changes I’m sure on my synthroid levels_


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## j2thomason

luvmarypoppins said:


> How is everyone doing?
> 
> Our out of state trip was exhausting. Dh stressing over driving in the rain, dealing with his cousins and I fell in the bathroom of the hotel room. Black and blue and hurt my knees. The R one still hurts, sigh.
> 
> Decided not to take the May trip. Last time we did that was when I had my cancer recurrence 2 years ago.
> 
> I am listening to the voice of financial reason here.
> 
> Had a nice bbq for mothers day with everyone. Ds2 grilled in the rain.
> 
> Going out sun for a pre bday dinner with all of them. Going to the dentist wed. I know they will send me to the endodontist or oral surgeon.
> 
> ds2 got voted Preceptor of the Year for his unit and missed Nurse of the Year in his unit by 2 votes.
> 
> Check in when you can. Hope all are well.




Sorry to hear that you had to cancel your trip. Hopefully, you can reschedule soon. Congrats to DS2! Good luck at the dentist!


----------



## j2thomason

I had a rough week last week. My endo did blood work at the end of March but didn't change my levo prescription until last week. So I was apparently on too high of a dose and ended up in the ER last Tuesday with palpitations and basically just feeling like I was having a heart attack. They checked everything and said that I looked great except for my TSH was very low and my T4 was very high....ugh! But they were able to get my endo to get my new prescription sent to the pharmacy. The day before I tripped over a chiar at work and messed up my bad knee.....walking up/down stairs is NOT fun! And then last Friday I woke up and had pink eye....the joys of working at a school This week has been better. I leave for WDW Monday! Send prayers and pixie dust for an uneventful trip!


----------



## Christine

Hello everyone.

Things are humming along here I guess. 

I'm scheduled for a colonoscopy on May 31st.  This is to follow up on the 6 weeks of diarrhea I had in the early part of the year.

My ankle, which never really got better, flared up.  Finally went back to the podiatrist and am now scheduled for an MRI this coming Monday.  As long as there are no tears in the tendon, I will stay in a boot and be put on 2 weeks of prednisone in an attempt to get the inflammation down.  If there is any type of tear, that will not heal and I'll have to consider surgery. 

I'm trying to plan a Disney trip with my cousin and her family.  My cousin's mother (my aunt who is my mother's sister) has ovarian cancer.  She is feeling fine but undergoing chemo now.  After the chemo is done and she hopefully gets a good report, the family wants to do a big trip.  We were trying for the first week in November (aunt's birthday) but all the deluxe resorts are totally booked so we may move it back to September which seems to have more availability.  Just waiting to see.  Of course, I hope my ankle is cooperating!


----------



## macraven

_Christine, I hope you don’t get the side effects on prednisone 

I had a two round of that packet and on day 7 had tremendous swelling
start

One week off of that lost the 13 lbs of water weight

Wish you the best on your medical issues improving!

Keep us posted how you are doing

A big hello to all the other posters in this thread!_


----------



## luvmarypoppins

macraven - hope your endo visit goes well

Julia - hope you have a great trip and sorry you are dealing with all the med level issues

Christine - hope your ankle issues improve and that your upcoming tests go well and give you some answers

well I think I will call this the summer of teeth lol

The dentist said the one tooth is too far gone and can't be saved. That is the one that the cap just fell off of. So I am going to the oral surgeon in 2 weeks. Same guy ds2 had for his wisdom teeth. Everything takes so long around here sigh. Then I need to go to the endodontist for a root canal of the other tooth. Then maybe an implant at the oral surgeon and a cap at the regular dentist. Can we just say $$$ lol.


----------



## Christine

Happy Saturday everyone.  

Hope everyone is well.

I'm just hanging around the house today.  I finally did it.  I made it through both a colonoscopy and upper endoscopy yesterday.  It was not fun and I had my usual "bad luck" with having anything done.  My mother told me "Christine, you are just jinxed."

I had my first colonoscopy about 12 years ago and the surgery center cancelled my procedure the morning due to an overnight snowstorm.  I was lucky that my doctor agreed to meet me at the local hospital and do it anyway but it was without benefit of an anesthesiologist.  

I've been really putting this one off but after having 6 weeks of diarrhea from late Jan to March, I knew I had to investigate.  God, the prep was awful and I felt that I wasn't going to make it through.  The night before, there was a huge thunderstorm.  When I got to the surgery center they said the doctor was running at least an hour behind because their internet had gone down and the equipment won't work without internet.  Anyway, my 8:30 colonoscopy ended happening closer to 11:00.  But I think it all went well (biopsies back next week).  Don't feel like I ever want to do that again.

MRI for the ankle came back with about 4 things wrong with my ankle.  Fortunately none require surgery.  Haven't decided yet if I'll do the Celebrex or predisone treatment.  I've got a pretty sensitive stomach so I worry about the NSAIDS.

Otherwise not much more going on.  I feel like I've spent all of 2019 so in a doctor's office.


----------



## macraven

_Christine 
Yay for no ankle surgery
Boo-hiss for what you had to go through for the colonoscopy...

I need one and have put if off the last 25 years
Had a hemorrhoidectomy years ago and fear I’m due for another 

MLP, hope you are doing well

Sending hugs to all and that includes all our readers _


----------



## Haimia

*I, too, had a colon - and endo-scopy recently in early April.  I thought I would never be done with the prep!  However, the day of the testing went smoothly. Except for the IV.  Tried four (I think) times to start IV.  Well, you just drained me out of everything and told me not to eat/drink from midnight on!!!  No fluid left in my body!*


----------



## Christine

Haimia said:


> *I, too, had a colon - and endo-scopy recently in early April.  I thought I would never be done with the prep!  However, the day of the testing went smoothly. Except for the IV.  Tried four (I think) times to start IV.  Well, you just drained me out of everything and told me not to eat/drink from midnight on!!!  No fluid left in my body!*



Oh good, I don't feel so alone.  I forgot that part of my story.  The nurse started working on my hand to insert the IV.  I said "veins lookin' good?"  She said "Oh yeah, there's three really good ones here."  She then inserts and a few seconds later starts frowning.  She said she got it in but the vein collapsed due to dehydration.  Told me it was "common."  She then put it in my arm and that seemed to go well.  

Not a fun day.


----------



## Christine

macraven said:


> _Christine
> Yay for no ankle surgery
> Boo-hiss for what you had to go through for the colonoscopy...
> 
> I need one and have put if off the last 25 years
> Had a hemorrhoidectomy years ago and fear I’m due for another
> 
> MLP, hope you are doing well
> 
> Sending hugs to all and that includes all our readers _



I can understand why you are putting if off.  I'm in no rush to ever do this again.  The procedure was fine, really.  I just don't think I can handle the prep again.


----------



## Haimia

Christine said:


> Oh good, I don't feel so alone.  I forgot that part of my story.  The nurse started working on my hand to insert the IV.  I said "veins lookin' good?"  She said "Oh yeah, there's three really good ones here."  She then inserts and a few seconds later starts frowning.  She said she got it in but the vein collapsed due to dehydration.  Told me it was "common."  She then put it in my arm and that seemed to go well.
> 
> Not a fun day.




*Yeah, I think two of mine collapsed and one completely blew.  I hate getting IV's.  Bloodwork is usually (!) okay, but the IV's are a different story!*


----------



## luvmarypoppins

Haimia and Christine - Glad you both are doing well after your procedures
and I hope your reports come back great

macraven -I am sure it's hard to think of having to do all those procedures

going to the oral surgeon tomm. Dh is going to Boston next week so We will have work around that. Ds1 and company going to Aruba Sunday. 

Ron Darling from the NY Mets broadcasting just had thyroid cancer surgery. He does not look well.


----------



## Christine

Hello everyone!  Thread has been quiet lately; hopefully that means everyone is doing well.

My colonoscopy/upper endoscopy biopsies came back a few days after the procedure.  One very small polyp in the colon.  All the other biopsies taken to look for microscopic colitis were negative.  So it's a real mystery as to why I had 6 weeks of unexplained "IBS."  It's been 3 weeks since the procedure and I don't think they are still back to normal.  The upper endoscopy had my stomach looking better than it did back in 2011.  The doctor couldn't see evidence of reflux but the biopsies did show .  it.  She wanted me to go back on Prilosec, but I'm going to wait and discuss with her at or follow up on 7/16.  I also have gastritis but I have that every time they look.   A coworker of mine says he does too, so not sure how common that is.

My ankle is still in pain (mild).  I have hesitated to call the podiatrist back because the next step is prescription NSAIDS or prednisone.  After the colonoscopy, then messing up my eyeballs for a week trying out contacts, then cutting a small piece of the tip of my finger off chopping zucchini (which required an ER visit) and THEN having a picture fall on my big toe at Marshall's last week, I just need a break from doctors.  Also, I've been moderating my eating since the colonoscopy and have lost about 4 lbs since then.  I just don't want to get on something that might blow me up like a balloon and derail my progress.  So I'll give that some time.  But I'd like to get the ankle in better shape BECAUSE.....

Yesterday I just finished booking our big family trip to Disney (November 2019).  This is really for my aunt (I may have mentioned upthread that she was diagnosed with ovarian cancer).  We have about 12 people going and the only deluxe resort we could get was the Grand Floridian.  I'm still in shock.  We did get a military rate so that helps, but it's still pricey.  I am going between giddy and sick over the cost, but I'm leaning more towards happy!!! It will be me, DH, DS, DD, my parents, my aunt, my cousin and her DH.  Cousin's DD, DS, son-in-law, and her son's girlfriend. PLUS a 3 and 4 year old which should make for a very different Disney experience than I've gotten used to.  Obviously we can't all tour together all the time--too many people, but hanging at the pool or some dinners could be fun.

Well, I hope everyone is doing well!


----------



## PolyAddict

Great thread!

I was diagnosed with Graves disease May 2005 after feeling like I was going to die!  Heart rate crazy, couldn't walk 5 steps without being out of breath etc...  My mother had the disease around the same age.  I was treated with methimazole for years.  In October of last year I was told I had Hoshimoto's disease which is the complete opposite.  I have gained weight like crazy.  I am only taking selinium to bring the antibodies down and it seems to be working.  My question is has anyone had both of these?


----------



## Christine

PolyAddict said:


> Great thread!
> 
> I was diagnosed with Graves disease May 2005 after feeling like I was going to die!  Heart rate crazy, couldn't walk 5 steps without being out of breath etc...  My mother had the disease around the same age.  I was treated with methimazole for years.  In October of last year I was told I had Hoshimoto's disease which is the complete opposite.  I have gained weight like crazy.  I am only taking selinium to bring the antibodies down and it seems to be working.  My question is has anyone had both of these?



Wow, I don't think I've heard of both Grave's and Hashimoto's together?  Did you have your thyroid ablated for Grave's Disease?  I ask because you say you were treated with methimazole for years.  So do you no longer use that?


----------



## PolyAddict

Christine said:


> Wow, I don't think I've heard of both Grave's and Hashimoto's together?  Did you have your thyroid ablated for Grave's Disease?  I ask because you say you were treated with methimazole for years.  So do you no longer use that?


I did not have it ablated.  I basically went into remission after many many years and 13 years later was diagnosed with Hashimoto's.


----------



## Christine

PolyAddict said:


> I did not have it ablated.  I basically went into remission after many many years and 13 years later was diagnosed with Hashimoto's.



How are you thyroid numbers now?  Are you hypo, hyper, normal?


----------



## PolyAddict

Christine said:


> How are you thyroid numbers now?  Are you hypo, hyper, normal?


They are normal.  I just have the Hoshimoto antibodies.


----------



## luvmarypoppins

PolyAddict - no advice. My dil has hashimoto. Wishing you all the best

Christine - the trip sounds great. Dh and I stayed there a few days one anniversary using ff miles.

Macraven - how you are feeling well

Singing mom - prayers for your dad

Well my tooth is out. Now I have a gaping hole in my gum.


----------



## SingingMom

Greetings to all - I've been MIA due to Dad's death and the dog's death, and DD's move into her new townhouse.  I'm still exhausted.  Miss my dad and now my sister in law's dad passed yesterday and my cousin's granddaughter had a sudden malignant brain tumor with surgery, with no hope of survival, and they  will be removing her from the vent this week.  7 Years old.  I just can't believe what a sad year this has been.  

I have spent time in Florida on two separate long stays to organize DD and supervise her remaining punch lists.  I'm so much happier in Florida - I can't wait for DH to be able to retire.  He was able to come down for the long July 4th weekend and we flew home together.  Now I'm trying to catch up on mail, bills, laundry, cleaning.  Saw Mom today - she's hanging in there.  Misses Dad terribly.  They were together 58 years.    When the Florida weather cools down a bit I may try to take her down to see DD's new home.  She can't really manage the stairs, so DD will get us a room on property and we'll just drive over to see the house.  
I also threw the idea out there today that maybe she'd like to try the cruise next season (just she & I from NYC).  Guess we'll see how she feels about that much travel.

I have overdue cardiologist, eye dr, mammo,  & dentist appointments, but I just don't have it in me to start that ball rolling.  And, after hearing your colonoscopy stories - FORGET IT - I'm putting that one on the VERY BACK BURNER!


----------



## Christine

SingingMom said:


> Greetings to all - I've been MIA due to Dad's death and the dog's death, and DD's move into her new townhouse.  I'm still exhausted.  Miss my dad and now my sister in law's dad passed yesterday and my cousin's granddaughter had a sudden malignant brain tumor with surgery, with no hope of survival, and they  will be removing her from the vent this week.  7 Years old.  I just can't believe what a sad year this has been.
> 
> I have spent time in Florida on two separate long stays to organize DD and supervise her remaining punch lists.  I'm so much happier in Florida - I can't wait for DH to be able to retire.  He was able to come down for the long July 4th weekend and we flew home together.  Now I'm trying to catch up on mail, bills, laundry, cleaning.  Saw Mom today - she's hanging in there.  Misses Dad terribly.  They were together 58 years.    When the Florida weather cools down a bit I may try to take her down to see DD's new home.  She can't really manage the stairs, so DD will get us a room on property and we'll just drive over to see the house.
> I also threw the idea out there today that maybe she'd like to try the cruise next season (just she & I from NYC).  Guess we'll see how she feels about that much travel.
> 
> I have overdue cardiologist, eye dr, mammo,  & dentist appointments, but I just don't have it in me to start that ball rolling.  And, after hearing your colonoscopy stories - FORGET IT - I'm putting that one on the VERY BACK BURNER!




SingingMom, so sorry to hear about all the bad news in your life right now.  Sometimes it just seems to come in droves, doesn't it.  I'm sure it's awful having your dad gone and quite an adjustment for your mom.  Sorry also about the dog, and hope that one was at least due to the natural course of things and not a surprise.

I hear ya on the doctor's appointments.  I've been through the ringer this year and they never stop. I just finished up with my annual GYN and mammogram appointment.  I have a one month break before I go to the endocrinologist.  I am glad to get the colonoscopy out of the way.  It's definitely best to do that one when you're life is calm!


----------



## Kennywood

When I was a teenager, I had a thyroidectomy.  Only a portion of my thyroid had to be removed, and I'm fortunate enough not to have to take any medication.

A while after my surgery, the scar on my neck was pretty noticeable.  I was out shopping one day and a little boy did what little kids do;  he pointed at my neck and asked, "What's wrong with your neck??".  Having answered that question many, many times before, I thought I'd try a different answer.  I looked at the boy and said, "When I was about your age, I talked back to my mother, and......" (Insert finger slash across the throat.)  The boy's eyes got VERY big and he said, "WOW!" and ran off!  I had every intention of telling him I was kidding and to truthfully answer his question, but he was gone in a flash!  

So, somewhere in the world, there is a now a man who probably still believes that, once upon a time, a "maniacal" woman slashed her son's throat for talking back to her.  Lol


----------



## SingingMom

Kennywood said:


> When I was a teenager, I had a thyroidectomy.  Only a portion of my thyroid had to be removed, and I'm fortunate enough not to have to take any medication.
> 
> A while after my surgery, the scar on my neck was pretty noticeable.  I was out shopping one day and a little boy did what little kids do;  he pointed at my neck and asked, "What's wrong with your neck??".  Having answered that question many, many times before, I thought I'd try a different answer.  I looked at the boy and said, "When I was about your age, I talked back to my mother, and......" (Insert finger slash across the throat.)  The boy's eyes got VERY big and he said, "WOW!" and ran off!  I had every intention of telling him I was kidding and to truthfully answer his question, but he was gone in a flash!
> 
> So, somewhere in the world, there is a now a man who probably still believes that, once upon a time, a "maniacal" woman slashed her son's throat for talking back to her.  Lol



Reminds me of a guy at a party who kept an entire group of women mesmerized with his neck scar story of stopping a would be mugger from harming someone by jumping him and getting knifed.....    Ended up he fell down the stairs Christmas morning holding the cymbals Santa had given him …..


----------



## MarBee

Hello!  Was just recently diagnosed hypothyroid.  Also related, my A1C level had me at borderline diabetic.  
 My primary called in a prescription for synthroid and wants me to take it for three weeks and see how my levels improve.  I wanted to make an appointment with an endocrinologist though just to make sure they were in agreement about a course of action.  
Do any of you have advice for which questions to ask the endo or my primary when I go to see them?
Also, does anyone have any thyroid diet tips. Or any tips at all in general.  I’m going to try to read through the last 203 pages here but thought it may be easier to have a direct reply handy for my appointment if you all didn’t mind helping me.
Thanks in advance!


----------



## luvmarypoppins

Singing Mom - so sorry to hear about your dad. Sending you my deepest sympathy, thoughts and prayers. 
MarBee - I don't know what  a thyroid diet would be.
it's been a quiet summer as dh has a big project. We dog sat last 2 weekends. Ds1 got a new job. 
going for my dental implant work on friday.
hope everyone is well. Check in when you can.


----------



## squeegee

Haven’t checked in in a long time, much has happened, thyroid-adjacent and otherwise, but am still alive and kicking, and glad to see other familiar names as well. Trying to convince hubs we need to take a first-ever Disney cruise next summer. Mobility has become somewhat limited and I’m thinking a ship may be easier to get around than the parks...? Or am I totally off-base?


----------



## squeegee

MarBee said:


> Hello!  Was just recently diagnosed hypothyroid.  Also related, my A1C level had me at borderline diabetic.
> My primary called in a prescription for synthroid and wants me to take it for three weeks and see how my levels improve.  I wanted to make an appointment with an endocrinologist though just to make sure they were in agreement about a course of action.
> Do any of you have advice for which questions to ask the endo or my primary when I go to see them?
> Also, does anyone have any thyroid diet tips. Or any tips at all in general.  I’m going to try to read through the last 203 pages here but thought it may be easier to have a direct reply handy for my appointment if you all didn’t mind helping me.
> Thanks in advance!


Can’t think of any thyroid-specific diet tips, beyond just trying to eat healthfully and mindfully. For the diabetic/borderline diabetic diets, limiting carbs will be the best bet, in my experience. If it’s white, it’s probably best avoided or minimized (tortillas, rice, bread, sugar...). Fruit is also very high sugar, even though it’s natural sugars. Use a food tracker (my fitness pal is good) that will allow you to track carbs, just so you can see where you stand - even if you don’t make any conscious changes, tracking is a good idea. When I had gestational diabetes, I was told to keep it under 60 net carbs/day.


----------



## AllisonK

I haven’t checked in here in ages! I had a total thyroidectomy in March 2015 for a precancerous nodule. Since then my numbers (and my weight) have been all over the place. My endocrinologist has been of no help and I have now, thanks to my fantastic primary care doctor, fired him. I mentioned to her in June that I have just been constantly tired and run down since before my surgery. Now my endo would have brushed this off as, “You’re fine, lose some weight.” (I initially gained 20 pounds after surgery, lost 15, and gained 25 back this last year - did I attribute all of the weight gain to my thyroid? No. It was my first year of teaching and I had a torn meniscus that complete sidelined me at the gym for three months - I had surgery for that in December and have been working out regularly again, mostly classes at the small, independently owned gym I belong to with occasional cardio thrown in at a Planet Fitness).

Anyway, my endo never once entertained the possibility of switching off the generic and onto a name brand. My primary care did. When I saw her two weeks ago for a follow up, she prescribed (and gave me a one month’s sample of) Tirosint. I started on the Tirosint last Friday (just over a week ago) and I’m feeling so much better already. I’m not nearly as tired as I’ve been for the past few years and my joints have been aching a lot less. I canceled the appointment I had last week with my endo and, unless my primary care sees the need to send me to the endo again, I will not be going back. Once I began reading about the generic Levothyroxine I was horrified as the fillers that are put in the pill. I have always been sensitive to lactose (since I was a little girl) and the generic Levothyroxine contains... lactose. The dosage also isn’t as well-regulated as the name brands are, so that is another issue as well.

I go for my annual thyroid ultrasound and my follow up with my primary care in October, so we will see how things go then.

On another note, I just started a new job as a special education teacher co-teaching 11th and 12th grade English. I’m a week in and I love it so far! Teaching is a career change for me and last year was my first full year in the classroom, where I taught 7th and 10th grade English. I’ve moved to a new school this year and already feel like I have so much more support as a new teacher!


----------



## j2thomason

AllisonK said:


> I haven’t checked in here in ages! I had a total thyroidectomy in March 2015 for a precancerous nodule. Since then my numbers (and my weight) have been all over the place. My endocrinologist has been of no help and I have now, thanks to my fantastic primary care doctor, fired him. I mentioned to her in June that I have just been constantly tired and run down since before my surgery. Now my endo would have brushed this off as, “You’re fine, lose some weight.” (I initially gained 20 pounds after surgery, lost 15, and gained 25 back this last year - did I attribute all of the weight gain to my thyroid? No. It was my first year of teaching and I had a torn meniscus that complete sidelined me at the gym for three months - I had surgery for that in December and have been working out regularly again, mostly classes at the small, independently owned gym I belong to with occasional cardio thrown in at a Planet Fitness).
> 
> Anyway, my endo never once entertained the possibility of switching off the generic and onto a name brand. My primary care did. When I saw her two weeks ago for a follow up, she prescribed (and gave me a one month’s sample of) Tirosint. I started on the Tirosint last Friday (just over a week ago) and I’m feeling so much better already. I’m not nearly as tired as I’ve been for the past few years and my joints have been aching a lot less. I canceled the appointment I had last week with my endo and, unless my primary care sees the need to send me to the endo again, I will not be going back. Once I began reading about the generic Levothyroxine I was horrified as the fillers that are put in the pill. I have always been sensitive to lactose (since I was a little girl) and the generic Levothyroxine contains... lactose. The dosage also isn’t as well-regulated as the name brands are, so that is another issue as well.
> 
> I go for my annual thyroid ultrasound and my follow up with my primary care in October, so we will see how things go then.
> 
> On another note, I just started a new job as a special education teacher co-teaching 11th and 12th grade English. I’m a week in and I love it so far! Teaching is a career change for me and last year was my first full year in the classroom, where I taught 7th and 10th grade English. I’ve moved to a new school this year and already feel like I have so much more support as a new teacher!



Allison,

I'm so glad to hear that you are improving. I had the opposite experience.  My primary care doctor didn't want me to see an endo and thought they could handle it, but they couldn't. I had to beg my primary care to even put me on medication last fall when my symptoms were so out of control that when every time I stood up my heart rate went through the roof. That went on for 3 months, I could even go to work. I am a retired teacher, but I still work part-time 3 days a week at my old school. I teach computer lab K-3. Thankfully, I was retired, because I wouldn't have been able to take that much time off otherwise. My primary care doctor started me off on.125 levo and now with my endo I am down to .75 and also off of the metoprolol that I had been on for palpitations. I realize all of these experiences vary from doctor to doctor.  I'm just glad that I found a doctor that would listen to me and work with me. I'm glad you did as well.

Now I am having other weird symptoms and I have no idea what is going on. When I use my "teaching voice" at school I have a sharp pain on the right side of my head resulting in a nonstop headache for about a month. I have a new primary care doctor now that they have given me 800 mg of ibuprofen, and also tramadol. Neither has helped. She even sent me for a head CT which came back negative. I also have styes on my eyes which has been happening on and off since January. I leave on a solo trip to WDW on 9/10 and am a little concerned about how I will fair. I have done several solo trips and LOVE them, but when I am having a nonstop headache, I think it may be tough. 

Allison, I hope your school year goes well. Special education is very rewarding, but can also be very difficult at times. Teach on!!


----------



## Christine

AllisonK said:


> I haven’t checked in here in ages! I had a total thyroidectomy in March 2015 for a precancerous nodule. Since then my numbers (and my weight) have been all over the place. My endocrinologist has been of no help and I have now, thanks to my fantastic primary care doctor, fired him. I mentioned to her in June that I have just been constantly tired and run down since before my surgery. Now my endo would have brushed this off as, “You’re fine, lose some weight.” (I initially gained 20 pounds after surgery, lost 15, and gained 25 back this last year - did I attribute all of the weight gain to my thyroid? No. It was my first year of teaching and I had a torn meniscus that complete sidelined me at the gym for three months - I had surgery for that in December and have been working out regularly again, mostly classes at the small, independently owned gym I belong to with occasional cardio thrown in at a Planet Fitness).
> 
> Anyway, my endo never once entertained the possibility of switching off the generic and onto a name brand. My primary care did. When I saw her two weeks ago for a follow up, she prescribed (and gave me a one month’s sample of) Tirosint. I started on the Tirosint last Friday (just over a week ago) and I’m feeling so much better already. I’m not nearly as tired as I’ve been for the past few years and my joints have been aching a lot less. I canceled the appointment I had last week with my endo and, unless my primary care sees the need to send me to the endo again, I will not be going back. Once I began reading about the generic Levothyroxine I was horrified as the fillers that are put in the pill. I have always been sensitive to lactose (since I was a little girl) and the generic Levothyroxine contains... lactose. The dosage also isn’t as well-regulated as the name brands are, so that is another issue as well.
> 
> I go for my annual thyroid ultrasound and my follow up with my primary care in October, so we will see how things go then.
> 
> On another note, I just started a new job as a special education teacher co-teaching 11th and 12th grade English. I’m a week in and I love it so far! Teaching is a career change for me and last year was my first full year in the classroom, where I taught 7th and 10th grade English. I’ve moved to a new school this year and already feel like I have so much more support as a new teacher!



Sounds like you had a really clueless endo.  Most of them know, especially with thyroid cancer patients, never to use generic because you'll get a different manufacturer every time you fill and the dosages aren't as tightly controlled.  

I did try Tirosint once, but I couldn't tolerate it.  It was like I got this "rush" for an hour or so every morning.  I do pretty well on Levoxyl.  It's a brand name priced lower than Synthroid and seems to work very well for me.


----------



## luvmarypoppins

Allison - happy to see you posting. Glad things are going well for you and happy to hear about the teaching. Are you the poster who also has kerataconus? They are talking about some laser vitamin thing with my ds. His is slowly getting worse.

j2thomason - sorry to hear of all your health issues. Hope you can get some answers.

Christine - sorry you are dealing with all the house stuff. I am sure it's fru strating 

my daughter in law is in the hospital. They are checking things out.
Friday ds3 is taking me for the sono. One test down then and 2 to go.
we puppy sat our grand puppy Austen, the King Cavalier. He is cute but a handful about 4 1/2 months.
Would love to go to food and wine but with dh job we don't know yet.
Went to a bridal shower and a picnic. Where did summer go?
Check in when you can.


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## Christine

luvmarypoppins said:


> Allison - happy to see you posting. Glad things are going well for you and happy to hear about the teaching. Are you the poster who also has kerataconus? They are talking about some laser vitamin thing with my ds. His is slowly getting worse.
> 
> j2thomason - sorry to hear of all your health issues. Hope you can get some answers.
> 
> Christine - sorry you are dealing with all the house stuff. I am sure it's fru strating
> 
> my daughter in law is in the hospital. They are checking things out.
> Friday ds3 is taking me for the sono. One test down then and 2 to go.
> we puppy sat our grand puppy Austen, the King Cavalier. He is cute but a handful about 4 1/2 months.
> Would love to go to food and wine but with dh job we don't know yet.
> Went to a bridal shower and a picnic. Where did summer go?
> Check in when you can.



Hi everyone.  

I've been at home for about 2 weeks now (teleworking).  Took prednisone and wearing walking boot to try to get my ankle to stop hurting.  It has helped but I go back into shoes this week so I am worried it will flare right up.

Counting down the days to my Disney trip (Nov 2nd).  This will be my first ever F&W.  Very excited about EATING on this trip.  Hope it's late enough in the season to not be  plagued with storms.


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## SingingMom

Back from three weeks in Florida to settle in DD's new puppy.  It was HOT HOT HOT!  Too hot to really be out in the daytime, except the day I spent floating in the pool.  Air conditioning was a must.  I had a long list of "mom duties" to take care of, so it was a very successful visit!  Spent way too much money eating out, but DD's schedule was insane - first part of visit her hours were 2:30pm to 1 am and the second part of the visit her hours were 5am to 4pm.  I'm still tired, I don't know how she does it. Good thing it's just a temporary assignment for a year.  

Walked around Food & Wine once but ate NOTHING.  It was just too hot to eat outside.  Maybe my thyroid meds need to be adjusted, but I was unbearably hot & sweaty.   Prepped for the hurricane that never came.  More reason to only listen to the local forecasts and not the mass hysteria of national weather stations!

We were able to ride the new Galaxy Edge Smugglers run.  I admit I am not a Star Wars fan at all, but I really can't figure out the appeal.  lol  I would never wait more than 30 minutes to see it again.  Give me Big Thunder Mountain any day!  

New puppy is 10 month old (retired) show shih Tzu.  I am in love.  She is the sweetest puppy I've ever seen.  Gorgeous.  She was retired from the ring early because the breeder wasn't satisfied with her "tail arch".   We think it is the most beautiful tail in the world!!         After losing our 15 year old shih Tzu two weeks before Dad passed, it is nice to have a dog in the family again - but one I can see as I come and go - not have the daily responsibility!  She will be a good companion for DD.   They will fly home for Christmas, so I'll see what I really think of having another "dog in the house" !

Back to my regular routine and then DH & I are taking our first vacation of the year - his belated 60th birthday celebration - four nights in Santa Monica.  We have a Vineyard Safari planned in Malibu..  I just want to sit on the beach..


----------



## luvmarypoppins

Christine - hope your foot heals
singing Mom - sorry the weather was hot. Your dd's dog sounds cute

Doing the cancer testing. Ds3 took me for the sono. Had my regular tech whom I love and then a student practicing. Yest. dh took me for the blood test. Called for the bone scan appt. And the place tells me they are closing!!!What!!! They have another office too far away. I also got my mammograms there too sigh. So lucky I found another place and I am going Monday since the script expires Wed.

My dil was in the hospital. A bad one with bad drs. She is recovering slowly.


----------



## macraven

I am way behind in posting here.
I have been reading up and trying to keep current.

Was having some computer issues and finally got it taken care of before I went to orlando.
Returned home yesterday and now have doctor appointments lined up today

I was trying to read using my iphone but typing on it was an eye strain at times so kept trying to figure out the issue with the iMac.
Think I have it corrected but really need to replace it.
It is not aging well.
I'm aging faster than my iMac.
Did have an eye check up with the opthalmologist and now have glasses/bifocals.
I can read the iphone quite well now.

Christine, hope the walking boot has helped you.
When the ankle has issues, it makes you miserable.
I've got 2 of those boots and a custom made one.
It served its purpose with me.
I'm at the point of needing surgery for it but waiting until the last minute to take on that surgery.

singing mom, Florida is hot.....
It didn't affect my thyroid meds though
Georgia has been very hot this September and October but yesterday temps here have improved.
I returned home from Orlando yesterday.

LMP, how is your daughter in law now?
I know her issues happened last month but hope she is doing better now.
When will  you know if you can do food and wine?

For all the other posters here, I hope you are doing better.


----------



## Christine

All, just checking in.  It's been forever!!

The prednisone and sitting on my butt really helped my ankle, but after a few weeks of being off the meds and back on my feet, the pain came back.  Not surprised.  This will be a chronic issue for me unless I get a tendon surgery and foot reconstruction, which I won't do until I have to.

My trip is in 4 days!!!  Can't wait, although I'm so nervous about getting packed and getting 16 people there and heading in the right direction.  I sure how the weather holds out for us. I'd like some pool time.

Hope everyone is doing well.


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## macraven

Christine
It’s kind of like herding cats when you have 16 peeps to watch over 

have a great vacation and hope you don’t  have bad flare ups with your foot/ankle


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## SingingMom

16 people?!!  No thank you!   

Santa Monica was great.  Weather was lovely - no humidity.  I see why people love California.   The traffic, however, is worse than NYC.  Could never live there.   Walked on the Santa Monica Pier but didn't sit on the beach.  Slept in (had a two room suite) and sat by the pool two days.  VERY relaxing.  
We stayed at the Fairmont Miramar on Wilshire Blvd - neat location - great views, restaurants, etc.  The Malibu Wine Safari was so much fun.  Ate at FIG and Water Grille, and took an UBER to West Hollywood to have dinner & drinks at Lisa Vanderpump's TomTom.  (we're cool.   )   Went to mass at Saint Monica's and walked the Third Street Promenade.  It was a very pleasant four nights!

Heading to Disney for Thanksgiving to see DD.  She's coming home for Christmas with the pup, then I'll fly back with her and stay 1 1/2 weeks while pup is spayed.   We start the wedding circuit in April - three friend's daughter's weddings this year - DD is maid of honor at one of them.  We will be busy.  

Endo appointment before Thanksgiving.  Need to catch up on eye, dentist, gyno - left all of that this year during dad's illness.  Better get back on track.

Stay well !


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## luvmarypoppins

Macraven - glad you had a good trip. What were your food and wine favorites?
singing Mom - glad you had a great trip too. Enjoy thanksgiving with your dd!
Christine - I am sure you will have lots of stories to tell from your 16 people trip.

Went for my 6 month check up. All is well PTL!!  My end said she is moving further away to the hospitals new branch office in ds 2 town.She is only working like 1 or 2 days and sat. So we took a sat. To combine with visiting ds and dil.

Planning a wdw trip. Hope it works out. Dh and ds 3 who has some days off. He will be wheelchair pusher. Prob at the Swan Nov 20-25. So we get F&W and MVMCP. Not great adr times.

Hope everyone is doing well. Check in when you can.


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## Christine

Hi all!  Hope everyone is well.

Got back from my trip on the 9th.  It was tiring, as most Disney trips are.  Just go, go, go.  I can never eat as many things as I want.  My digestive system just doesn't like it!

The Grand Floridian was nice but probably wouldn't stay there again.  No real reason, it just doesn't wow me and I think I enjoyed our "cheapo" Garden Wing room at the Contemporary more.  Again, no complaints but ho-hum.  Not sure what I was looking for.  Weather was mostly good.  There were some periods of time it was cool, and I didn't care for that, and then two days that were blazing hot but manageable.  For the first time ever, I did one of the ticketed events (first MVMCP) and it was a total bust due to the rain.  

Otherwise, I enjoyed the trip and it was great to be there.  Already want to go back.  Really enjoyed the Food & Wine festival at Epcot.  Thought crowds might be better in November.  They were not.  Ate at:  Citricos (group of 16), GF Cafe (group of 16), Crew Club Lounge to get the Prime Rib sliders, Chef Art's Homecomin' (that Hummingbird Cake is a STAR), GF Cafe for Brunch, and Morimoto Asia.  I may have left something out....

Took me a bit to get back into the work groove, but I am back in it!  Tomorrow I go for my first ever appointment with a rheumatologist.  It's been suggested to me over the past 2-3 years that I may have an autoimmune disorder and I've had a few kind of offhand suggestions from a few doctors that maybe I could pursue it.  So I finally got the appointment.  All the paperwork I filled out seemed so geared to arthritis, which I'm pretty sure is NOT my problem, so I hope this doctor is smart about other things.

Now onto Thanksgiving!  My parents are in Florida this year, I have no interest in cooking, so my son made us reservations at a bistro type place close to DC for a Thanksgiving buffet.  I'm really looking forward to it.


----------



## macraven

Christine said:


> Hi all!  Hope everyone is well.
> 
> iTomorrow I go for my first ever appointment with a rheumatologist.  It's been suggested to me over the past 2-3 years that I may have an autoimmune disorder and I've had a few kind of offhand suggestions from a few doctors that maybe I could pursue it.  So I finally got the appointment.  All the paperwork I filled out seemed so geared to arthritis, which I'm pretty sure is NOT my problem, so I hope this doctor is smart about other things.



I hope you have more success than I did with a rheumatologist

I felt like it was a wasted visit when I saw one
Doc was more into arthritis than anything else
I went back to my endocrinologist for my autoimmune issues 

My endo I have now is taking time off from
work to have a knee replacement 
She sent all her patients to another doc for maintenance rx while she is out 
If my endo is off longer than planned, I will look to replace her as her referral doc is not a good fit for me

Its very difficult to find some specialistwhere I am

This is the only reason I miss living in Chicago...many good specialists were there

Christine I hope your new doc is skilled in all autoimmune issues

Been thinking of all in this thread and wish everyone well!


----------



## Christine

macraven said:


> I hope you have more success than I did with a rheumatologist
> 
> I felt like it was a wasted visit when I saw one
> Doc was more into arthritis than anything else
> I went back to my endocrinologist for my autoimmune issues
> 
> My endo I have now is taking time off from
> work to have a knee replacement
> She sent all her patients to another doc for maintenance rx while she is out
> If my endo is off longer than planned, I will look to replace her as her referral doc is not a good fit for me
> 
> Its very difficult to find some specialistwhere I am
> 
> This is the only reason I miss living in Chicago...many good specialists were there
> 
> Christine I hope your new doc is skilled in all autoimmune issues
> 
> Been thinking of all in this thread and wish everyone well!



That's what I'm afraid of--he'll just be "into" arthritis.  But when I made the appointment, I made mention of the website being big into arthritis and did the doctor do other things and they were like "oh YES..."  So I try to look at it like endocrinologist who seem to be overrun with diabetics but also do other things.  I *wish* my endo would treat but he is one of the doctors who suggested I go the rheumatologist route.  There seems to be a shortage of them around here.  I think I could probably get some stellar treatment at Johns Hopkins--seems they have an autoimmune clinic, but that would be at least an hour's drive from me on a GOOD day with no traffic, which never happens.


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## macraven

Sometimes you have to bite the bullet and travel an hour or two for the best specialists

Once tests and evaluations are done, you’ll have more knowledge in what you need to take and do in the future

I can go to Vanderbilt in about two hours or to Emory
Neither one is a pleasant drive due to traffic  but if I can’t find an endo replacement by early next year, I’ll be setting up an appointment with one of them

Check out Johns Hopkins
They may be aware of a specialist that is closer to your home.


----------



## Christine

macraven said:


> Sometimes you have to bite the bullet and travel an hour or two for the best specialists
> 
> Once tests and evaluations are done, you’ll have more knowledge in what you need to take and do in the future
> 
> I can go to Vanderbilt in about two hours or to Emory
> Neither one is a pleasant drive due to traffic  but if I can’t find an endo replacement by early next year, I’ll be setting up an appointment with one of them
> 
> Check out Johns Hopkins
> They may be aware of a specialist that is closer to your home.



I should but I have no way to get there.  I'm having issues with highway driving so I need to have a driver.  Since my mother decided to move to Florida, I don't have her for that stuff for most of the year.   DH is on a particular job right now where he only gets limited days off since returning from our trip.  So I'll see how this appointment goes today.  If it seems awful, I'll try to book something at Hopkins when my parents will be in town.  At least today, I'll get some preliminary testing done (just the basics I'm sure to see if any of my inflammation markers are elevated).  If they aren't, we're probably not looking at autoimmune.


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## luvmarypoppins

Glad you had a good trip Christine. 2 days more for me. Just tweaked some adr's. We are doing mvmcp too.
The ticket prices blew me away. I don't think I will renew the annual pass. We are staying at the Swan for free with dh ff miles and he flies home free thanks to southwest miles. I am doing this as cheap as possible. Ds is lamenting that I won't get a scooter. He will push the wheelchair when I am tired of walking.

macraven too. Know what you mean about a good endo.
Mine is moving to a new office (double trip time for me now (and cutting her hours), but I am sticking with her for the time being.

Hope everyone is doing well.


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## SingingMom

My endocrinologist moved too, but closer!!   I go tomorrow, so it will be interesting to see the new office.

Friday DH & I fly to spend Thanksgiving with DD. She has off an extra day, so that will be nice.  She has a "daddy do list"!  Only staying 7 nights (short trip for me) We have Thanksgiving reservations at the Four Seasons on property, so I'm hoping it's good!  Made reservations for Jingle Bell Jingle Bam Dessert Party, so we can have a Christmas event together.  DD's coming home for Christmas with the puppy and I'll return with her for New Years and two weeks.


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## Christine

Y'all are making me jealous with your upcoming trips.  I'm ready to go back.

Singing Mom -- have you ever stayed at the Four Seasons.  I'm thinking I might like to try it to see if it gives the Grand Floridia and run for the money!

luvmarypoppins--I hope you have a better MVMCP than we did.  I won't do it again (the rain didn't help).  How come you don't want an ECV?

My rheumatology appointment went okay today.  The guy seemed nice enough and I had bloodwork with about 9 different tests in it for various autoimmune disorders.  He feels that I may have Sjogren's but that it hasn't gone systemic.


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## SingingMom

Christine said:


> Y'all are making me jealous with your upcoming trips.  I'm ready to go back.
> 
> Singing Mom -- have you ever stayed at the Four Seasons.  I'm thinking I might like to try it to see if it gives the Grand Floridia and run for the money!



I've never stayed there - made Thanksgiving reservations because it sounded similar to the place we go on Christmas Eve.  I'll let you know what the hotel looks like.   Now that DD has her townhouse, we have our own room and don't stay at the resorts now.  I miss maid service.  LOL


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## luvmarypoppins

So thankful for all of you. Happy Thanksgiving.
Trying to coordinate plans for tomm. We finally had to say dinner is at 7 whether you are here or not. Ds 3 is doing most of the cooking. He wants to go to the Macy's parade too. 
Trip was ok. Will update soon.


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## Christine

Hope everyone had a great Thanksgiving.  We went out to dinner in Arlington.  It was so-so.  I've spent the last 2 days trying to find a turkey to make a quick post-Thanksgiving day dinner.  I've been to two grocery stores and they are ALL gone.  Nothing.  Weird.

Got hit with a bout of vertigo last night, oddly enough.  That was pretty awful. Spent about 12 hours in bed.  I think it's mostly over but I feel a little "off" today.

All my tests came back from the rheumatologist.  The basic "entry level" tests came back positive, but all the subsequent tests to determine if I had a disorder were all clearly negative.  I guess the basic tests can be positive for many people, especially as you age, but the further tests won't be.  So, still, no explanations for some of my weirdness!!

Enjoy the rest of your weekend!


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## luvmarypoppins

Christine - sorry your tests didn't give you all the answers you were looking for.

I am thankful ds3 did most of the cooking. We didn't eat until almost 8. Ds 2 and dil dog ate 2 turkey bones at her sisters house so they had to go to the emergency vet.

The WDW trip was ok. Ds3 was a great wheelchair pusher. There is no way I could walk with all he wanted to do. The weather was great. Did 3 days of food and wine, enjoyed the Christmas party- dh left at 10. Rode the skyliner. That is a one and done for me. Dh  and ds rode on the new star wars ride. The weekend was so crazy compared to the week day. The Swan was fine - even better because it was free! I didn't renew my annual pass because dh job situation is uncertain. Didn't like the new Epcot fireworks.


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## SingingMom

Four Seasons Thanksgiving buffet was WONDERFUL!  Pricey, but worth it.  We will definitely return.  I'd love to stay there - it was SO pretty.  Weather was beautiful all week - we only went to Hollywood Studios for the Jingle Bell Jingle Bam Dessert party and one afternoon in Disney Springs for lunch at Jaleo and some Christmas shopping.   If you have ever been to Spain and enjoyed the food, RUN to Jaleo!   It was our second visit - simply amazing.  Felt like we were back in Spain.  Stayed clear of the Disney holiday crowds otherwise.

DH had his "Daddy Do List" and was quite busy the entire week.  He also detected some car issues, so added auto shop to the list.  Happy he was there to catch that.  Hate that DD is alone 950 miles away!   We introduced him to the new pup and he fell in love with her, as she with him.  DD is flying home for Christmas with the pup and I'm going back with her for two weeks.  

This weekend we will start getting our house ready for Christmas (I'm hosting) and we have our theatre subscription tickets to Paper Mill Playhouse to see R&H Cinderella on Sunday.


----------



## Christine

SingingMom said:


> Four Seasons Thanksgiving buffet was WONDERFUL!  Pricey, but worth it.  We will definitely return.  I'd love to stay there - it was SO pretty.  Weather was beautiful all week - we only went to Hollywood Studios for the Jingle Bell Jingle Bam Dessert party and one afternoon in Disney Springs for lunch at Jaleo and some Christmas shopping.   If you have ever been to Spain and enjoyed the food, RUN to Jaleo!   It was our second visit - simply amazing.  Felt like we were back in Spain.  Stayed clear of the Disney holiday crowds otherwise.
> 
> DH had his "Daddy Do List" and was quite busy the entire week.  He also detected some car issues, so added auto shop to the list.  Happy he was there to catch that.  Hate that DD is alone 950 miles away!   We introduced him to the new pup and he fell in love with her, as she with him.  DD is flying home for Christmas with the pup and I'm going back with her for two weeks.
> 
> This weekend we will start getting our house ready for Christmas (I'm hosting) and we have our theatre subscription tickets to Paper Mill Playhouse to see R&H Cinderella on Sunday.



Sounds like a fun trip.  Thanks for the feedback on the Four Seasons T-Day dinner.  I'll let my parents know.  They might be able to do that next year!  I want to stay there as well and that may be my next option!  Hoping it would wow me versus the Grand Floridian.  As for Jaleo, I did not try the one at Disney and probably never will because we have, oh, probably 2-3 locations here in the DC area so it's a "hometown" place for us, but it's been wildly popular here for YEARS and is consistently good so I agree that if you don't have the access to it anywhere else, definitely hit it up in Disney.


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## luvmarypoppins

Happy 2020!!  Wishing you all a happy and healthy new year!
Now for a very special announcement... I am going to ...
Have another daughter in law!!!!
Ds1 got engaged. Apparently most plans are under way.
Labor Day Sunday. 10 girls in her bridal party, omg!!!I
She invited me to dress shopping Sunday at Kleinfelds, the Say Yes to the Dress place  in NYC. I said I couldn't physically handle that. She works in the city.
The wedding venue is over an hour from us again, sigh. 
They want to honeymoon in Disney for 3 days until they can go to Japan for ds anime obsession. I don't think he has vacation time just starting the new job.
Can't believe they met through an online dating site!


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## macraven

Congratulations to adding to your family!
Looks like it will be a large wedding and it will be great!
Lovely your future DIL wants to include you in her planning.

Happy 2020 to all here!


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## Christine

Congrats!  Sounds like it will be a fun wedding.  A girl in my office got her dress from Kleinfelds.  We don't live near it, but she made a special trip up there for it.


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## SingingMom

Very exciting news about the wedding!   DD hasn't met anyone yet - slim pickings of eligible bachelors at Disney! She's met very good friends, however, so that's comforting.  I spent a few weeks with her after her Christmas visit home - puppy had her spay and I "babysat"  lol   Weather was lovely.  We did Candlelight Processional and New Years Eve at Four Seasons.  Took care of some things in her home and went to the movies a few times - very nice visit.   Going back Jan 30 with hubby to see some Festival of the Arts.  He'll stay a week, I'll stay two!   Then we go back for a long weekend to attend DD's friend wedding.  It's a couple from her DCP who live in New Zealand and are having a reception in Florida.  Told hubby we HAVE to attend since they specifically asked us to come!  lol


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## luvmarypoppins

Jan 19 I almost died.
Had an aortic dissection
Surgeon operatedt and fixed the top
Tomm I am having a ct scan see if I need more surgery


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## macraven

Oh my goodness!

Dearly pray that tomorrow testing will turn out good and no more surgery needed


Hope you are not in pain and have a quick healing


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## SingingMom

luvmarypoppins said:


> Jan 19 I almost died.
> Had an aortic dissection
> Surgeon operatedt and fixed the top
> Tomm I am having a ct scan see if I need more surgery



How terrible!!!!!    Please know you are in my prayers and if you can update us, we want to know how you are doing!


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## Haimia

*OMG, Luvmarypoppins, that is awful and wonderful that you made it to surgery!  Aortic dissection usually results in the big "D"!  I hope the CT reveals no need for more surgery.  Hope you heal well!  I have an aneurysm in my upper thoractic area that is being watched.  *


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## luvmarypoppins

Hi everyone! Trying to heal, recover and get back to the land of the living.
God is so good and I am so thankful to be alive!
One nurse told dh it was very bad and they all needed to come say goodbye.
I remember everyone crying, ds3 asking my wishes. Told him what cemetery and what to dress me in. But God had other plans.
No one ever saw someone live like me. My body made all these blood clots around my aorta to protect it 
They had to put a special spinal catheter in me so I wouldn't get a spinal stroke and be paralyzed. They had to call in the head of pain management to do it 9pm. No one wanted to touch me because of all my surgical scar tissue. Right then the pastor of our church was on speaker phone praying and the  dr.said, yeah we can use all the help we can get.
Only met the surgeon before the surgery. Head of the vascular surgery dept. Very nice. It was ds2 bday and I prayed I wouldn't die on his bday.
They had this huge hybrid operating room for me with 4 surgeons, head of cardiothoracic surgery, giant tv screens.
The surgeon told dh he operated on 2 people with as much damage as me and they both died. He said I was "very impressive" . He never saw anything like this before! Only God!
The ct showed extensive damage. He most likely will repair the bottom in the future. It's less risky and no spinal drain.
They normally do follow up ct's every 6 months but mine is so bad they have to do it every 3 months.
Ds3 has FMLA and had been taking care of me. Tomm. going back to reg. dr. and wed. last day of home pt.
I feel like I am on the low iodine diet at times with the salt restrictions etc.
And in other news ds1 is going to the basketball playoffs
Future dil got her wedding dress. It's ok. A modern style. Got it here not in NYC.
D's 2 visits alot.
Ds3 is getting a job in the intensive care float pool. He had so many people visit my room.
Now they think this could be a connective tissue disease and want the d's checked out. Ds3 is good so far.


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## Haimia

*Get well soon!  Really scary stuff you mentioned above!*


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## luvmarypoppins

Just checking in. Hope everyone is well.
Christine - Haven't seen you post in a while. Hope everything is ok.
Well corona virus is alive and well here. 1 person  positive in our county. Ds3 has gotten his rules. He can wear hospital assigned scrubs, leave them there and take a shower before leaving there. Right now he is training  through the ICU's but I am sure he would be assigned to that in the future.
Dh has been sick for 2 weeks but slowly getting better. Ds3 is amazed I haven't caught it. Mostly a bad cough etc.
I always feel weak and tired. Sometimes I feel nauseous and feel like I can't eat alot. When I do some of the pt exercises I feel out of breath. I don't know if this is my new normal. Also I get pain by my heart and left shoulder where the graft was implanted. It is annoying.
Will be getting a blood test and sono for the cancer checkup in the next 2 weeks.
Ds1 has his last playoff friday. There was a little video online from the local news. Got future dil her bridal shower gifts just in case. She said the shower list is 90 ladies. Omg!  This overwhelms me. 
Got some insurance benefits statements. I am so thankful for dh working so we have good insurance. So far it's about $200k. 
Check in when you can.


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## MamaBelle4

Really glad I found this thread, I'm going to take my time and read through it. After literal months of complete exhaustion, I was just diagnosed with hypothyroidism. I don't really know what that means yet. I've been put on levothyroxine and I have to take a multi vitamin because I'm anemic. I wish I would have thought to look here when I was checking out my labs! The antibodies one terrified me! The value is supposed to be under 9, but mine was >1,000. 

I'm hoping this stuff works quickly and I get some energy back. I'm tired of being tired all the time!!


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## luvmarypoppins

How is everyone doing?
We are on lockdown here in NY until May 15
Dh working from home
Ds1 survived a 10 person lay off so far  Still wondering if the wedding will happen.
Ds2 working from home. Dil on unemployment until company reopens
Ds3 in corona central. He gets to wear a special 1500 mask because of his big nose. Everyone is jealous. It's like an astronaut helmet with battery pack.
Future dil now has 12 bridesmaids and dh is the best man.
I am sick with the bad cough. Getting meds. Phone visit with np. No video.
Need aortic ct In 2 weeks and they moved the visit to June
Haven't called endo yet


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## macraven

Do many here take synthroid or do you use the generic?

 (I had issues with the generic before.)


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## luvmarypoppins

I use the name brand. My insurance only pays for the generic. With thyroid cancer I don't want generics because you don't know what fillers are in them.


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## squeegee

luvmarypoppins said:


> How is everyone doing?
> We are on lockdown here in NY until May 15
> Dh working from home
> Ds1 survived a 10 person lay off so far  Still wondering if the wedding will happen.
> Ds2 working from home. Dil on unemployment until company reopens
> Ds3 in corona central. He gets to wear a special 1500 mask because of his big nose. Everyone is jealous. It's like an astronaut helmet with battery pack.
> Future dil now has 12 bridesmaids and dh is the best man.
> I am sick with the bad cough. Getting meds. Phone visit with np. No video.
> Need aortic ct In 2 weeks and they moved the visit to June
> Haven't called endo yet



Doing alright here, all things considered. Received new diagnosis in November, of Lambert-Eaton myasthenic syndrome, which helps explain the fatigue and weakness I’d been struggling with since the thyroid cancer. Went on FMLA in August and was let go in January. So, I guess it was good timing. LOL. Have been quarantined with my daughter for weeks. Only hubs goes out for work and groceries.


----------



## squeegee

macraven said:


> Do many here take synthroid or do you use the generic?
> 
> (I had issues with the generic before.)



I use name brand Tirosint. There’s a coupon on their website that works with my insurance and brings my cost to $25/mo.


----------



## crazylady

macraven said:


> Do many here take synthroid or do you use the generic?
> 
> (I had issues with the generic before.)


 
I take the generic with no issues.


----------



## macraven

Thanks everyone for your answers.
I’ve been on synthroid 36 years but had a two year time period of on its generic due the doctor I had at the time.

I had a dreadful time those two years so switched docs and stayed with brand name.

My insurance only knocks off $20 of the cost, rest is on me.

Guess I was hoping others were able to switch to generic without ill effects.


----------



## SamFaniam

macraven said:


> Thanks everyone for your answers.
> I’ve been on synthroid 36 years but had a two year time period of on its generic due the doctor I had at the time.
> 
> I had a dreadful time those two years so switched docs and stayed with brand name.
> 
> My insurance only knocks off $20 of the cost, rest is on me.
> 
> Guess I was hoping others were able to switch to generic without ill effects.



I had a total thyroidectomy 10 years ago, so take Synthroid daily. I did try the generics, but the challenge was that they sometimes reacted a little bit differently, the Synthroid make sure my level stays steady. Abbvie does have a coupon for Synthroid that makes it $25 a month with my insurance.


----------



## Dan Murphy

luvmarypoppins said:


> How is everyone doing?
> We are on lockdown here in NY until May 15
> Dh working from home
> Ds1 survived a 10 person lay off so far  Still wondering if the wedding will happen.
> Ds2 working from home. Dil on unemployment until company reopens
> Ds3 in corona central. He gets to wear a special 1500 mask because of his big nose. Everyone is jealous. It's like an astronaut helmet with battery pack.
> Future dil now has 12 bridesmaids and dh is the best man.
> I am sick with the bad cough. Getting meds. Phone visit with np. No video.
> Need aortic ct In 2 weeks and they moved the visit to June
> Haven't called endo yet


You have a lot on your palte there, LMP. 's  Hang in there. 


macraven said:


> Do many here take synthroid or do you use the generic?
> 
> (I had issues with the generic before.)


My endo prescribes that generic is fine but mail order (CVS/Caremark) always ships brand Synthroid, priced at generic. I've taken for about 36 years also, Mac.


----------



## Haimia

SamFaniam said:


> I had a total thyroidectomy 10 years ago, so take Synthroid daily. I did try the generics, but the challenge was that they sometimes reacted a little bit differently, the Synthroid make sure my level stays steady. Abbvie does have a coupon for Synthroid that makes it $25 a month with my insurance.



*How did you get that coupon?  Was it on their website or ??*


----------



## MamaBelle4

I was diagnosed with Hashimoto's but haven't been able to get my blood work tested again because of covid-19. The Dr prescribed 50mcg of levothyroxine. That was about a month and a half ago. I'm feeling a lot better though I'm still cold a lot and have periods of exhaustion, but I feel much more like myself than I have in recent memories.


----------



## SamFaniam

Haimia said:


> *How did you get that coupon?  Was it on their website or ??*



I think originally the information was on a sample that my physician had given me. But the information is on their website also. 

www.synthroid.com/support/before-breakfast-club


----------



## Haimia

*Thanks!*


----------



## andersonsc

Looking for guidance/advice.  My son just got labs back and TSH is 6.7 Is this that bad a result with normal being 5?  PCP said she’d order antibody test and start him on thyroid med.  is it ok to have this treated by pcp or do we need endocrinologist?  Son is 20 and has been tired for years.  Last TSH a few years ago was 2.


----------



## squeegee

Based on my experience, that’s not terrible/awfully high. It must also be looked at in conjunction with the other thyroid hormones, and other lab tests. Good that they’re checking antibodies. Has he had an ultrasound?

If your PCP is knowledgeable, they’re definitely able to manage this for you, without an endocrinologist. If you don’t think they’re up to speed, an Endo may bw useful, but finding a good doctor is trial-and-error.


----------



## andersonsc

thank you for your help.  

QUOTE="squeegee, post: 61842395, member: 397314"]
Based on my experience, that’s not terrible/awfully high. It must also be looked at in conjunction with the other thyroid hormones, and other lab tests. Good that they’re checking antibodies. Has he had an ultrasound?

If your PCP is knowledgeable, they’re definitely able to manage this for you, without an endocrinologist. If you don’t think they’re up to speed, an Endo may bw useful, but finding a good doctor is trial-and-error. 
[/QUOTE]


----------



## Christine

Hello everyone.  I can't believe I haven't looked at this thread is SO long.  I guess because I was teleworking so much that when I'm done, I can't bear being on so much.  I usually make a few posts on the community board and then I am done.  @luvmarypoppins OMG!  I'm so sorry you had to go through that and glad you made it.  My coworker had this and survived also.  Turns out she has some genetic issue that causes it.  Both her father and brother died of this.  She was in the hospital visiting her brother when she collapsed and got diagnosed with the same thing.

Just to address past posts:

I take brand name Levoxyl and have for years.  I don't know why but I like it better than Synthroid.  My TSH seems even more stable where with Synthroid, I tend to get too hyper and can't control it much with dose changes.

To @andersonsc, hope your son is doing okay.  A TSH of 6.7 is definitely too high to be living life with (although you can).  For a non-thyroid cancer person, one should aim for a 1-2 TSH level.

I've been home since March 17th.  I don't do much but go to grocery stores (probably too much).  For the first 6 weeks I was home, I just ate what I wanted and my weight started creeping up again (fast) so I'm back on a better plan of eating and it's nice that I've lost a few pounds.  Feeling better already; although eating was the highlight of my day and I don't have that anymore.  Weather around here is still funky.  Mostly cold and rainy.  I can't wait to get some HEAT!!!

My parents are down in Florida in their home at The Villages.  They left right after Christmas and they generally stay through early May.  They are holding off coming back because there's nothing to do here in Virginia.  They have a TAD bit more freedom in Florida and the weather is better.  Their restaurants are open but my parents won't go.  It's kind of ridiculous anyway, my mother says.  Low capacity, paper and plastic everything, masks.  How do you eat a steak with a plastic knife and fork!   My mom's bummed because Sweet Tomatoes is never going to reopen.  It's one of her favorite places there.

Oh well, everyone enjoy the weekend and have a happy Mother's Day.


----------



## luvmarypoppins

Checking in. Welcome to all the new posters
Squeegee - Sorry to hear you are dealing with these health issues
Christine - good to see you post!!
We haven't heard from @SingingMom 
I had a terrible reaction to that antibiotic and was practically paralyzed for 3 days. Ds said go to the hospital. I refused.
We are locked down until at least June 6. Dh does our shopping. Getting takeout next week for my bday and our anniversary.
Went for blood tests at 6:30 am. I was the only one there then 3 people came in.
Mon. I am having phone visit with endo. They insisted with no sono, gheesh.
Had phone visit with pcp. My liver and kidney are back to normal. 
I don't do the video phone just talk.
June 9 I am finally getting the neck sono and then aorta cts. They said I am suppose to be the 1st in the machine for the day.
Ds3 was doing covid patients. Very hard and emotional. He is doing surgical ICU now.
We know 4 people who have died. Saddest being our church secretary's husband. Such a great guy!
Be safe everyone.


----------



## SingingMom

macraven said:


> Do many here take synthroid or do you use the generic?
> 
> (I had issues with the generic before.)


ONLY Synthroid!   My endocrinologists have all insisted.


----------



## SingingMom

luvmarypoppins said:


> I use the name brand. My insurance only pays for the generic. With thyroid cancer I don't want generics because you don't know what fillers are in them.


My insurance changed to "generic" and my doctor personally notified them that it was unacceptable.  (been on Synthroid for almost 30 years!)  They revised their ruling.


----------



## SingingMom

luvmarypoppins said:


> Checking in. Welcome to all the new posters
> Squeegee - Sorry to hear you are dealing with these health issues
> Christine - good to see you post!!
> We haven't heard from @SingingMom
> I had a terrible reaction to that antibiotic and was practically paralyzed for 3 days. Ds said go to the hospital. I refused.
> We are locked down until at least June 6. Dh does our shopping. Getting takeout next week for my bday and our anniversary.
> Went for blood tests at 6:30 am. I was the only one there then 3 people came in.
> Mon. I am having phone visit with endo. They insisted with no sono, gheesh.
> Had phone visit with pcp. My liver and kidney are back to normal.
> I don't do the video phone just talk.
> June 9 I am finally getting the neck sono and then aorta cts. They said I am suppose to be the 1st in the machine for the day.
> Ds3 was doing covid patients. Very hard and emotional. He is doing surgical ICU now.
> We know 4 people who have died. Saddest being our church secretary's husband. Such a great guy!
> Be safe everyone.


I'm here!  lol   I haven't been on the DIS because we are living it.    DD was furloughed April 19.  After her being alone for over a month, DH and I flew down to check on her.  Try telling this Mama Bear she couldn't go to Florida from NY/NJ/CT.  I would have given Gov. DeSantis a piece of my mind..   

DH stayed a week, I stayed an extra week and DD & pup returned  with me.  She'll probably stay another week before heading back to Florida.  Thank God she has the pup.   I'll probably go back when she is called back to work because the dog will have a hard time adjusting!  

We have looked at some Del Webb communities and 4Seasons communities.  Think we like the one in Tampa area the best.  Need to get busy to sell this house and fly south!


----------



## luvmarypoppins

I had my phone visit with the endo today. She said my tsh went from .1 up.to .6 and of course with thyroid cancer thats a big no no. So instead of an extra 50Mci I take on Sunday she now wants me to take an extra 150Mci and then have a blood test recheck in a month and she will have another phone visit with me. They only give her a 2 week schedule right now. Told her the vitamin d test was not ordered.
She of course wanted to know about the surgery.
Also I told her to please call after the sono.
All this medical stuff right now makes my head spin.


----------



## luvmarypoppins

Celebrating National Cancer Survivor Day today!!!
It was definitely different celebrating my birthday and our anniversary this year. Nothing says romance like ds3 sitting at the table with you while blasting the tv.
Tuesday is my neck sonogram and aortic ct's.
The endo still hasn't sent my blood test script.Sigh. I am beginning to lose a little confidence in her. I will call I suppose to follow up with the office especially if she doesn't call with the sono results.


----------



## luvmarypoppins

Well here are my updates. My testing was a nightmare. Sitting with a beeper in a hot van for 1 1/2 hours. Dh went in 3 times. Last time he said he wasn't leaving until they called me. They said they mixed up my testing schedule. Neck sono girl was young and unfriendly. Never going to this location again.
Endo's nurse called. Said sono looked good. Told her I never got the blood test script. Said she would mail it. Nothing, sigh. Calling again tomorrow 
Saw surgeon tiday. They let dh come in with me hooray! Good and bad. One thing has healed but now I know why I am having stabbing pain in my back. My scoliosis is so bad it's pressing the aorta and graft right up against my ribs and it's causing a pool of blood behind my aorta. That is very bad.
We will do a ct in sept. And maybe surgery in Oct. Yup perfect timing because my dh is suppose to go to Germany in Oct.
Now I need to call Pcp for a follow up. Surgeon says I need to ask her for a prescription pain killer.
I am getting weary of all this medical stuff. At least he was willing to wait until after the wedding unless it turns into an emergency and I am basically not suppose to bend, stretch etc, so basically veg out lol.


----------



## luvmarypoppins

I got my blood tests last week. Haven't heard from the endo yet. This Quest lab is the biggest one around here and they had 4 or 5 chairs out. The other 25 were stacked up and roped off.
Aug. 1st is dil bridal shower. I am just so done with this already. 85 people are invited. The mom has 2 back up plans besides this restraunt. She showed me the list. My son didn't really tell me who was invited. He actually made me uninvite people to the wedding. I know 3 people invited not including other dil who is corona virus crazy and probably won't go. I told mil I will try and go and stay until I can't take the pain anymore.
Dil finally got called back to work. Future dil not until oct.
Have a great holiday and check in when you can.


----------



## Christine

Hello everyone.  It's been awhile (again).  Life is so boring, I just don't have much to say.

Still teleworking.  My area has been pretty good with the virus, but numbers are ticking up again so I think I know what we are in for.  Another rollback, I'm sure.

My parents got out of Florida back in late May some time and I think they are glad to be out of that hot mess.  Not sure when/if they will return.  

I spent the last few months catching up on my routine medical appointments.  Dentist, GYN, mammogram and all is well.  I don't have anything to do until September when I have my 6 month checkup with the endo.

I've been doing very well with my eating (after the first 6 weeks at home of eating what I want) and have managed to drop about 15 lbs.  It feels good.  I do miss just eating whatever, but eating right is probably very important now so I'm going to try to stick with it.  I don't do much exercise AT ALL due to my ankle issue so that's a drag.  I really can't even walk the dog.  

Otherwise, just trying to stay safe.  I probably go out to too many grocery stores but I'm all the time needing fresh fruit/produce.  Thought about making a quick beach trip but then put that aside:  too much money and nothing to do while there!  I'll just save up for WDW and have a great trip again ONE DAY! 

Stay well everyone!


----------



## luvmarypoppins

Just checking in. The days blur into each other lol.

I had ds print out my lab results. I misunderstood the endo. My tsh did not go up to .6. It was 6.1   The added 150Mci pill on Sundays has brought it down alot.
Dil bridal shower is Saturday at a restaurant. I am masking up. The wedding situation is fluid. They are going to Niagara Falls for the honeymoon.
Ds2 wife and now ds are corona crazy. Of course she is not going to the shower.
Ds3 is at the beach alot. He has been assigned to the Covid floor alot. There are only 8 patients and he has been getting the non vent ones.
Now they are sending dh project to Virginia. He is not included. Praying he can get with another department because we really need the health insurance.
4 houses sold on our street recently so we will see some new faces.
Going to the pcp for a check up and of Aug.
Hope everyone is doing well.


----------



## SingingMom

Well, I guess Italy will have to wait.....   Adventures by Disney cancelled our October trip.  Truth be told, I'm very relieved.  I couldn't possibly imagine touring each day with a mask on.  Luckily, we will receive 100% refund on trip and flights.  

Heading to Florida next week to celebrate DD's birthday.  We're taking her to Clearwater Beach for a few days.  She's been working as a trainer at Three Caballero's  in EPCOT Mexico.  Very uncomfortable to work with mask and face shield.  

We've had all three weddings we were invited to this year put on hold.  Two are rescheduled for next year, one couple got married with immediate family at church & was supposed to have reception this weekend in Baltimore, but had to cancel.  

My mom is in rehab due to leg problems and she's a very difficult patient.  DH has a pinched nerve in his back and is in agony.   Last year was so hard for us - we were hoping 2020 would have been more pleasant.  NOPE.    

Stay well!


----------



## luvmarypoppins

singing mom - I hope you have a great time with your dd celebrating her birthday.

I survived the bridal shower. Glad dh was with me. We were one of the few with masks on. About 60 of us squished in a room. The food was served Italian style on big platters you passed around. Everyone had to share the same serving spoon and you had to break off your own bread. Not happy with that. They did manage to take a picture with us. I took off the mask and held my breath.

Its 22 days and only 50 people allowed. They were offered a December date or postpone to next year with huge price increase. 

Ds3 was tested for covid. He was assigned there alot. PTL it was negative.

My cousin and grandkids are going to Polynesian end of the month. 

Went to church. Only like 66 instead of regular 180. I felt safe there. Temp check, mandatory mask and socially distanced rows.

The storm was bad in some places here. ds 2 and dil had no power for 6 days.


----------



## disneychrista

I was diagnosed hypothyroid this week. It came as a surprise to me as I was thinking I was dealing with a liver or gallbladder issue. I started on Levothyroxine on Wednesday. My TSH is 8.22 up from 4.02 11 months earlier. 

How long did it take to get your dosage right?


----------



## keen23

I had Hashimoto's, and wound up getting my thyroid removed. It's taken two years to get my dosage right, and it's still not perfect, but close enough. I need to be at 167.5 MCG of Levothyroxine per day, but they don't make that pill size. So I skip a day every two weeks, and that levels it out. The other option is to take 175 MCG one day, and 150 MCG the next, but my insurance balked at that prescription. Liothyronine makes me incredibly shaky and paranoid, so I can't take that.


----------



## j2thomason

disneychrista said:


> I was diagnosed hypothyroid this week. It came as a surprise to me as I was thinking I was dealing with a liver or gallbladder issue. I started on Levothyroxine on Wednesday. My TSH is 8.22 up from 4.02 11 months earlier.
> 
> How long did it take to get your dosage right?


It took about 6-7 months from the time I was diagnosed. I would go back to my endo every 6 weeks to reevaluate. I love my endo! He looks at the data, but also listens to me. Good luck DisneyChrista getting the right dosage and feeling better soon!


----------



## luvmarypoppins

It's Thyroid Cancer Awareness Month
Hope everyone is doing well.
Went to my pcp. Got a script for a pain killer for the graft issues. I had to sign papers and pass a drug swab test, gheesh. Also need blood tests, mammo and she wants me to do that cologuard test, gheesh.


----------



## Christine

Hi everyone.  Just thought I'd chime in again.

Had my latest endo appointment on Friday.  Thyroid numbers seem to be okay (TSH 1.75).  Feeling okay.  The endo was *thrilled* that I had lost 15 lbs.  My best friend also goes to him and we set our appointments at the same time.  She has lost 30 lbs and she said she thought he was happier about it than she was.  I'm sure as an endo taking care of lots of Type 2 diabetes patients, seeing weight loss makes him feel better.

Anyway, all that went well.  My Vitamin D wasn't even deficient!

I ended up going to Rehoboth Beach, Delaware at the end of August.  I think we got the last really HOT week of the summer and the weather was just perfect.  I went out to dinner twice (haven't done that at all during the pandemic).  They had two places where you could easily dine outside with lots of space, so that was a nice change.

Everyone was really good about masks in crowded outdoor spaces (boardwalk situations for instance) and it was nice to sit on a beach all day, no mask, and forget about it all.

We brought our dogs.  I have a dog and my son has a dog and they just loved the beach.

Started thinking about a trip to Disney but chickened out.  I think I'm still too concerned about being indoors for anything length of time with people bunched up (which rules out many of th ride queues). 

Bad news/good news:  found out yesterday that my son (my baby) is moving to San Diego.  His S/O got a job out there and wants to go.  My son has a great job here and is working remotely so, during this time, he can go to San Diego and do his job.  But when everyone is called back into the office, he will get 6 weeks notice, and he'll either have to come back or leave.  So we shall see.  I'm excited for him because I think it's a great thing to do while you're not tied down by anything, but I realize that I probably won't see him for quite some time and I'm really down about that. 

Take care everyone!


----------



## luvmarypoppins

Christine - glad you had a good endo visit and a nice beach vacation. I am sure you will miss your ds. Glad there is skype, what's app etc.

My cousin and grandkids went to Disney and the Poly in August. He said the cms were so nice in the parks and always cleaning everything and now they are going back Christmas day to Caribbean beach resort.

We survived the rehearsal brunch. The place was beautiful by the water. Of course no one was wearing masks, sigh.

The wedding was terrible. All my new dil cared about was taking pictures with her 24 person bridal party and her relatives. After 1 1/2 hours of me waiting my dh had it. We finally got 1 picture of our family with a terrible background. We missed the whole cocktail hour because of dil. The food was terrible. Ds offered to take a picture when we were eating and it was getting dark out lol. No thanks. I didn't say anything to him during our dance. Didn't see them cut the cake. You had to keep going to different rooms. D's friend got drunk and threw up in the dance floor. Oh we finally got another picture in the dark dance room.sigh.  At some after party that ds3 went to the said oh there was a "mishap" with your mom and the pictures . The next day was another mini wedding. None of our family went. Nice different dress and scenery at a park restraunt, totally outside.
No one wearing masks at the wedding either sigh.

Went to the vascular surgeon today. He said the ct s showed things are getting worse. So he will do the next surgery in Oct. or early Nov. They need to coordinate and have 2 vascular surgeon and 2 cardiac surgeons all in the OR with me at the same time. About 4-5 days in intensive care again and that horrible spinal drain again. There is also a problem with my r kidney that he doesn't want to deal with now.

Hope everyone is doing well.


----------



## Christine

luvmarypoppins said:


> Christine - glad you had a good endo visit and a nice beach vacation. I am sure you will miss your ds. Glad there is skype, what's app etc.
> 
> My cousin and grandkids went to Disney and the Poly in August. He said the cms were so nice in the parks and always cleaning everything and now they are going back Christmas day to Caribbean beach resort.
> 
> We survived the rehearsal brunch. The place was beautiful by the water. Of course no one was wearing masks, sigh.
> 
> The wedding was terrible. All my new dil cared about was taking pictures with her 24 person bridal party and her relatives. After 1 1/2 hours of me waiting my dh had it. We finally got 1 picture of our family with a terrible background. We missed the whole cocktail hour because of dil. The food was terrible. Ds offered to take a picture when we were eating and it was getting dark out lol. No thanks. I didn't say anything to him during our dance. Didn't see them cut the cake. You had to keep going to different rooms. D's friend got drunk and threw up in the dance floor. Oh we finally got another picture in the dark dance room.sigh.  At some after party that ds3 went to the said oh there was a "mishap" with your mom and the pictures . The next day was another mini wedding. None of our family went. Nice different dress and scenery at a park restraunt, totally outside.
> No one wearing masks at the wedding either sigh.
> 
> Went to the vascular surgeon today. He said the ct s showed things are getting worse. So he will do the next surgery in Oct. or early Nov. They need to coordinate and have 2 vascular surgeon and 2 cardiac surgeons all in the OR with me at the same time. About 4-5 days in intensive care again and that horrible spinal drain again. There is also a problem with my r kidney that he doesn't want to deal with now.
> 
> Hope everyone is doing well.



LMP, so sorry to hear that things aren't getting off on the right foot with your new DIL.  That's just terrible.  And I hate to come on here and be a judgy judger, but I'm really alarmed at the whole no-mask thing at the wedding party.  Especially for you being at increased risk of complications should you catch it.  My aunt (who is in her late 70s) has a lifelong friend (also same age) that recently attended her granddaughter's wedding in New Jersey.  I don't know what the mask compliance was like but the ceremony itself was indoors with 150 people.  Reception outside.  The wedding was in late August and now they have many members of the wedding party (including the elderly grandmother) with COVID.  So far so good that no one has gotten hospitalized but the older woman is really struggling with the illness and my aunt is afraid for her.  I just don't understand the recklessness (but off my soapbox now....).

How could they be so inconsiderate with the photos.  Just awful.

Anyway, stay healthy and best of luck getting ready for your surgery.  Please keep us posted.


----------



## SingingMom

Christine- good for you and weight loss!  I am watching what I eat, but can't seem to lose.  At least I'm not gaining! Hubby had terrible pinched nerve/sciatica from a herniated disk.  I've been busy with him getting him to various doctor appointments..    I need to make a ton of appointments for myself - mammo, gyno, cardiologist, eye, teeth, .....  Only one I have already set is endo!  

LMP- So sorry that you have to go through the surgery.  I'll be praying for you. 
The wedding sounds terrible, what a shame.  We had three weddings this year that were postponed because of COVID.  I certainly wouldn't want to wear a mask on my wedding day!    I rarely go anywhere that requires it.  The longest time I've worn one is at church.  I just can't breathe and it makes me claustrophobic !

Our ABD Italy trip was cancelled (we got 100% back) but DD still has the time off, so she's coming home with her pup for a few weeks.  We are going to Cape May for four nights, just to walk on the beach and relax.  The rest of her time off will be visiting friends  & relatives.  She's getting sentimental that we are leaving NJ.

Stay well, everyone!


----------



## luvmarypoppins

Singing Mom - I hope you have a good visit with your dd

O-21, O-21  No,it's not bingo. It's my surgery date. October 21. I called today for an update because I haven't heard from them in 2 weeks. Now they say I need a cardiac clearance. I told them before I don't have a cardiologist. So she is sending paperwork over tomm. She told me just call and take the 1st dr. they give me, gheesh. Then I have to cancel my pcp visit and make a surgical follow up visit instead. Then I need to call the endo. My head spins.  They will also call me for the pre op stuff.

I have to go in on the 20 to get the horrid spinal drain in. Visiting hours are 3-6 only. 1 person. Ds3 is working some of the time I am there. I told him send his friends to check on me. 

Dh going to Boston tomm. Until Saturday. Ds3 going to be working part time starting  Thanksgiving. It was too much with full time school and internship at the Dr too.


----------



## luvmarypoppins

Happy November everyone!
I made it through another surgery. The vascular surgeon saved my life again. I am thanking God for sure.
6 days in the ICU. They put the spinal drain in while I was awake in the operating room. I was screaming alot and they were saying I was doing great. 
the surgery was delayed several hours Because a resident ordered a med I wasn't suppose to have. I heard he got in Big trouble. They kept me in a coma overnight.
glad ds was there to check on me. One time he said I'm taking a break from the crackhead in the er. The chief of cardiac surgery came in my room and ds said no I am not her nurse. I am her son. The chief high fived ds when he told him he really works in the ICU float pool. Apparently ds thought this was totally awesome, lol.
the surgeon did some unplanned things dh said and now I think I have another stent near my liver.
I am weak and tired. He said I am healing well and I need another ct scan in a month to see if things worked. I know he was mentioning the r kidney next. I guess I am seeing what they meant by massive damage, truly remarkable to be alive etc.
I have much to be thankful for this Thanksgiving. Don't know what those plans will be yet.
check in when you can.


----------



## macraven

Have you in my prayers for a complete healing.


----------



## SingingMom

God bless you - you've been through SO MUCH!  



luvmarypoppins said:


> Happy November everyone!
> I made it through another surgery. The vascular surgeon saved my life again. I am thanking God for sure.
> 6 days in the ICU. They put the spinal drain in while I was awake in the operating room. I was screaming alot and they were saying I was doing great.
> the surgery was delayed several hours Because a resident ordered a med I wasn't suppose to have. I heard he got in Big trouble. They kept me in a coma overnight.
> glad ds was there to check on me. One time he said I'm taking a break from the crackhead in the er. The chief of cardiac surgery came in my room and ds said no I am not her nurse. I am her son. The chief high fived ds when he told him he really works in the ICU float pool. Apparently ds thought this was totally awesome, lol.
> the surgeon did some unplanned things dh said and now I think I have another stent near my liver.
> I am weak and tired. He said I am healing well and I need another ct scan in a month to see if things worked. I know he was mentioning the r kidney next. I guess I am seeing what they meant by massive damage, truly remarkable to be alive etc.
> I have much to be thankful for this Thanksgiving. Don't know what those plans will be yet.
> check in when you can.


----------



## luvmarypoppins

Happy early Thanksgiving to all!
In this crazy year I know we all can find some things to be thankful for. I know I sure am thankful for my faith, family and great surgeon.
well ds1 and probably dil are not happy we don't want them here for Thanksgiving. Ds2 and dil are totally happy to stay away from everyone.
Ds3 will probably cook most of the meal.
Working on my tests. The endo is a nightmare. 1/2 her fault and 1/2 mine. The blood text script expired 2 days ago. Then I made a sono and combined ct appt. And they tell me there is no order from the endo for the test. Gheesh. Compliments of my telehealth phone call in May with her. So they are suppose to call me and hopefully dh can pick up the paperwork at the office closer to our house next week. DEC. 3rd I am suppose to get the sono and ct and see the surgeon dec. 15. They will tell me about the endo. I really don't care about that since she is so much farther away now and she has messed up tests before too like not ordering things.
Check in when you can.


----------



## Christine

Hey everyone, checking in here!  Not doing too much.  Having a small Thanksgiving.  My parents are local in the area and we will go to their house.  I rarely go out of the house.  DD will join us and my son is in San Diego so we won't be seeing him.

My DH goes to work every day at the White House (he's a tradesman, not a politician!!).  They had an exposure early this week so they shut his job down and he had to get a test on Thursday.  We are still awaiting results.  His job won't open back up until Monday the 30th.  We aren't too concerned about being positive.  My DH has very little contact with this person and everyone wears a mask on the job 100%.  They all worked since March with no exposures/cases so that process has worked.  But this guy lives in WV (low mask compliance state) and commutes in so he picked it up at home and decided it was okay to come to work feeling sick AND having taken a test.  Stupid.  

Not sure if I've ever discussed it here but I've had issues with a tendon in my ankle since Nov 2018.  Finally went to another doctor for a second opinion and he's said I have done everything conservative that I can do to help this and it's now time for surgery if I want to improve.  Basically they have to reconstruct my foot, so I'm thinking on that.  It won't be until next year if I do it.  The guy is already booking into February so by the time I make up my mind at the next appointment, I'm sure he'll be into March or April.  It has a 3 month minimum recovery time.  Ugggh, I just want to bury my head in the sand.

Well, everyone have a great Thanksgiving and try to stay out of crowds!


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## macraven

Christine, some doctors are so good it’s hard to get a surgery set up soon rather then later 

wish you good luck you don’t have to wait until spring for your surgery


----------



## SingingMom

Happy Thanksgiving!  We are headed to spend it with DD because she doesn't really have enough time to fly back & forth.  Still waiting for her schedule to see where we are on Christmas!  
Going to Gaylord Palms for Thanksgiving Brunch.  Looking forward to it! I need a break from purging the house.  Getting ready to put it on the market!


----------



## Christine

SingingMom said:


> Happy Thanksgiving!  We are headed to spend it with DD because she doesn't really have enough time to fly back & forth.  Still waiting for her schedule to see where we are on Christmas!
> Going to Gaylord Palms for Thanksgiving Brunch.  Looking forward to it! I need a break from purging the house.  Getting ready to put it on the market!



Have a great time!  Are they still doing indoor dining there are will it be outdoors.  They've pulled us back here (we were at 100% and now down to 25%).  Weather is getting too cold for outside dining so guess I won't be doing that for a bit.

Enjoy the change of scenery!


----------



## SingingMom

Christine said:


> Have a great time!  Are they still doing indoor dining there are will it be outdoors.  They've pulled us back here (we were at 100% and now down to 25%).  Weather is getting too cold for outside dining so guess I won't be doing that for a bit.
> 
> Enjoy the change of scenery!


Still doing indoor dining - with social distancing of tables.  I'm getting very annoyed at this point.  If we don't try to accomplish herd immunity, we are bond to be on house arrest indefinitely.  We don't do this for the flu, for goodness sakes. My humble opinion is protect the elderly and compromised ill, let the rest of the public make their own common sense decisions.  That's the key - we have lost all "common sense" in this country.

off my soapbox  lol    Happy Thanksgiving!


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## Dan Murphy

Thought I'd stop by, been forever since I have.





luvmarypoppins said:


> Happy early Thanksgiving to all!





luvmarypoppins said:


> Working on my tests.


Hoping all those future tests get booked in and all go well, LMP


Christine said:


> I've had issues with a tendon in my ankle since Nov 2018


Likewise, Christine, hoping your tendon surgery, if needed, goes well and not all that long off into the future.


Christine said:


> My DH goes to work every day at the White House


   Yikes.  That has to be the #1 spreader site in the country.  I wouldn't go closer than 1400 Pennsylvania Ave. Hoping DH stays healthy.


Christine said:


> They've pulled us back here (we were at 100% and now down to 25%).


We were at 50%, now back to 0% inside.  Among other limitations, movies, museums and casinos all closed again.  10-15,000 new cases a day, over 100 dead every day.


SingingMom said:


> If we don't try to accomplish herd immunity,


  They tried that in Sweden, SM.  Saw on the news yesterday, Sweden has MORE than 4 times the total dead of the combined neighbors, Denmark, Norway, Finland. 


SingingMom said:


> Happy Thanksgiving!


In any case, Happy Thanksgiving to you, LMP, Mac, Christine and SM.  Stay safe, stay healthy.  Enjoy the holiday, different as it may be this year.  Next year will be different, better.


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## luvmarypoppins

Merry almost Christmas everyone and Happy Holidays.
Hope everyone is doing well.
I am popping in with happy news!! I went to the vascular surgeon for a check up. He said I am healing well and there is only one aneurysm left. I don't have to see him until next December. Praise God! We also saw a lady from church. I was happy to see her since we miss everyone there.
I saw my lab tests. I think I am still a little anemic.
Should I be worried about that  Last tsh was .17 and now it has risen again to .50. I see the endo on Jan. 9th. She is always obsessed with as close to undetectable as possible with my variant so wondering why she might not have added more synthroid over the phone if needed?
And in other news. Covid rates are rising and they have banned visitors at the hospital. Glad ds3 only working p/t now. He got his 1st covid vaccine. Just sore at injection site. Now his friend at another hospital has covid. They don't have separate covid units there. Also the pastor who married ds1 and dil has covid too.
My cousin is in Disney solo at Pop Century.. His dd's family is coming Christmas day and staying at Riviera until Jan.3rd or 5th.
Wishing you all a Happy and Healthy 2021.
Check in when you can.


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## luvmarypoppins

Happy New Year 2021 to everyone.
We survived Covid Christmas 2020. We gave meals to go to both families that ds3 cooked and did a gift exchange on the porch. Later we did a 3 way virtual live gift opening. That was fun.
Pcp says I am doing well and don t have to go back for 6 months
Today was the endo visit at her new office. The place reminds me of the new hospital addition. Huge and hollow. The exam room is the size of a closet.
She said I'm doing great and lost another 9 lbs. See her in 6 months.
She also broke her foot and has a boot.
Got to see ds2 and briefly dil. We had to stay in our car with masks on after the endo visit.
Ds3 had his 2nd vaccine. Day 1 was sore arm. Day 2 was back and shoulder pain with heating pad.
The pastor who married ds1 took a turn for the worse and was put on the echmo machine but he had a miracle and recovered. Still sick and weak. The d rs. said they never saw anything like that before.PTL!
I have been doing alot of reading since I can't really do much.
Check in when you can.


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## macraven

LMP lost more weight and I found it

I’ll work on getting it off soon


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## Christine

Hi all, it's been awhile.  I keep forgetting to check this thread!

Still spending my life indoors for the most part.  Haven't eaten in or outside of a restaurant since my beach trip in August.  Weather is so bad here now, there are no real options for outdoor dining. 

My parents got both doses of the Moderna vaccine so that's good.  They did better in Virginia getting it than in Florida, which while Florida has all the good press, the reality of how it's really working 'on the ground' seems to be another story with the old folks an some friends I have who live there.  So the parents arranged the vaccine here in Virginia and made sure they were here in their Virginia home for the injections.

Lord knows when I'll get it.  Probably the summer as I have no conditions which is a good thing I guess.

My foot reconstruction surgery is scheduled for March 4th.  I am so scared.  I've had the pre op physical (vitamin D low and another weird quirk on my EKG that's apparently a variant of normal now).  I have to have a COVID test 3 days before surgery.  Hopefully it will remain as an outpatient surgery but there is a chance the surgeon could admit me.  Not sure what would cause that--nothing good I'm sure.  Got the lecture from my GP on being careful about DVTs/Blood Clots so that didn't help my mood.

I see the endo next week for my 6 month checkup. Not expecting any surprises there.

Hope everyone is doing well.


----------



## luvmarypoppins

Christine - Wishing you all the best with your surgery. The covid test is a little uncomfortable. I felt stinging after. Did the dr. say anything about the low vitamin D? Wondering if an over the counter supplement is sufficient. Mine is so bad I need the prescription one. I saw your other post that it’s a tendon issue? And a 3 month recovery? I am sure you will be happy when you feel like you again! I take low dose aspirin for the day stuff but now a prescription too.  Keep us updated. Sending healing prayers to you.
I have had bad pain the last 2 days. Dj thinks my l toes are looking more purple and my r leg more swollen. I have rested, used a heating pad and muscle relaxers as my l chest and side are so painful.
The snow and cold makes thing weary and dreary here.
We dog sat the King Cavalier. He is so cute.
Thanks to ds3 and dil1 Dh and I are getting our vaccines. Dj has to go in March to a racetrack over 1 hour away near JFK airport. I go In April to the university.
Ds2, fil, her sister and bil all got appts  They opened comorbitities here. Hooray for asthma, diabetes, cancer,
Obesity, hypertension etc.


----------



## Christine

luvmarypoppins said:


> Christine - Wishing you all the best with your surgery. The covid test is a little uncomfortable. I felt stinging after. Did the dr. say anything about the low vitamin D? Wondering if an over the counter supplement is sufficient. Mine is so bad I need the prescription one. I saw your other post that it’s a tendon issue? And a 3 month recovery? I am sure you will be happy when you feel like you again! I take low dose aspirin for the day stuff but now a prescription too.  Keep us updated. Sending healing prayers to you.
> I have had bad pain the last 2 days. Dj thinks my l toes are looking more purple and my r leg more swollen. I have rested, used a heating pad and muscle relaxers as my l chest and side are so painful.
> The snow and cold makes thing weary and dreary here.
> We dog sat the King Cavalier. He is so cute.
> Thanks to ds3 and dil1 Dh and I are getting our vaccines. Dj has to go in March to a racetrack over 1 hour away near JFK airport. I go In April to the university.
> Ds2, fil, her sister and bil all got appts  They opened comorbitities here. Hooray for asthma, diabetes, cancer,
> Obesity, hypertension etc.



Thanks for the good wishes!  I actually have a foot issue that causes the tendon to be chronically inflamed.  It's called "acquired flat foot deformity" so basically my foot has collapsed over the years.  Now that it's fully flat, it strains one of the tendons that supports your arch.  So, they will reconstruct my foot which essentially "breaking" it in 3 places and resetting it to form an arch.  This will relieve the strain on the tendon.  

Good luck with the vaccine.  I'm thinking I won't get one till summer!


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## luvmarypoppins

Christine - Just wanted to wish you all the best with your surgery tomorrow. Sending you good thoughts and prayers. Keep us updated.

Ds1 told me his work is sending him to Orlando in July for a trade show. They haven’t planned anything yet but his wife will fly down for a mini vacation. Actually this is where they wanted to go for their honeymoon. I am sure they will go to Sea World too.

And my cousins daughter and family are staying at the Swan Easter week so I need to hear about that too.

Ds2 is getting his first vaccine next week so hopefully it goes well.

Everyone check in when you can.


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## Christine

Hi everyone.  Well, I'm about 5 days out from surgery and doing okay.  The pain was bad for the first few days.  I went home with a nerve block (with two catheters in my leg).  They weren't working well and the meds in them were giving me all sorts of side effects.  Something was wrong.  Removed the catheters (supposed to do so on my own).  One of them was against a vein and it was nicked. Couldn't control the bleeding so had to call 911 and go to the ER the day after surgery.  They got it stopped but that took hours.  All my pain meds wore off and I was in misery.

Things have calmed down now and pain is under control.  No need for percocet anymore.  I got to get a hard cast put on Wednesday.  It's been a wild ride.

Thanks for asking LMP.  I can hear in your writing that you are wistful to go to Disney!  I've been sitting here reading about people's tri[s and such and I'd love to go.  Maybe next year.

I did find out that my son, who is now in San Diego, is going to come home for a week in April.  It will be good to see him.


----------



## luvmarypoppins

Christine - Happy to hear that you made it through the surgery but that vein incident must have been scary!
Hoping each day is better for you as you rest and heal. It’s good that you have your sons visit to look forward to.
Dh, ds2 and I got our 1st covid shots. Ds3 got us appointments at a hospital pop up for their own patients at an indoor soccer gym. Ds2 went to the racetrack. That would have been an almost 3 hour round trip for Dh. Our combined side effects were sore arm, back, shoulder, headache and tiredness.
Just found out one of the authors I read had thyroid cancer. They only took out half her thyroid because her surgeon said the other side was fine and now finally 4 months later she is getting synthroid, Levo etc. I am almost afraid to ask her anything but her care seems...lacking??


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## Haimia

*You had to remover your own catheters!! Wow, I thought the doctor would do that in a follow up visit.  Sounds like the doctor should have done it, as you had a problem that required an ER visit.  No fun for sure.  Glad to hear you are doing better now!  Hope healing continues event-free!

Luv, yes, I agree on your author's care.  Four months after surgery and she FINALLY gets synthroid!!  That is a bit ridiculous!!  I would have had to have a second surgery to remove the other side if my removed half was cancerous.  I opted for the total removal to avoid a second surgery - other side was not working correctly, anyway!!  Hope she does well!*


----------



## Christine

Haimia said:


> *You had to remover your own catheters!! Wow, I thought the doctor would do that in a follow up visit.  Sounds like the doctor should have done it, as you had a problem that required an ER visit.  No fun for sure.  Glad to hear you are doing better now!  Hope healing continues event-free!
> 
> Luv, yes, I agree on your author's care.  Four months after surgery and she FINALLY gets synthroid!!  That is a bit ridiculous!!  I would have had to have a second surgery to remove the other side if my removed half was cancerous.  I opted for the total removal to avoid a second surgery - other side was not working correctly, anyway!!  Hope she does well!*



Yes, I had to remove them.  The catheters were designed for easy patient removal.  For the most part, that's the way it goes.  Both of them came out super easy but the one was obviously leaning on a vein.  Totally the fault of the anesthesiologist and I think he should have "redone" it when he knew it wasn't good.  Oh well.  Still have a huge bruise from it but it's starting to stop hurting.  I'll never get one of those things again even though my surgeon said he's never seen a previous issue with them.  I feel like everything happens to me!

Got an appointment for my first vaccine on Tuesday.  Getting Pfizer it seems.  I'm kind of scared.


----------



## Haimia

*Oh, Christine, I hear you about the "everything happens to me"!  I have had trouble with stitches - in particular the vicral (sp?) stitches that are dissolvable.  My body does not like them, my body spits them out and does not heal with them in me!  I have had incisions open and had to have the incision repaired because of vicral!*


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## luvmarypoppins

Christine- How was your vaccine?

Monday Dh, ds2 and I got our 2nd shots. Ds2 has had sore arm, tiredness, headache, brain fog and body aches. Dh only had a sore arm and I had headache, brain fog, tiredness and really sore arm yesterday. Today is good. Oh I also had more ringing in my ear than usual.
Ds1 has to go to Orlando in July for a trade show. Dil is going and they will make it a belated honeymoon. She doesn’t want to get vaccinated because she heard there could be fertility issues? Don’t know what ds1 is doing.
Ds3  said last weekend hospital wide they had 10 covid admissions. He is working Thursday- Friday but now I won’t feel so stressed when he comes home etc. He is going to Puerto Rico mid April.
Hope @singing mom is doing well
Everyone check in when you can.


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## luvmarypoppins

This thread has been so quiet. How is everyone doing?
I finally went to the grocery store! First time since my first aorta surgery last January. Honestly it was hard trying to walk and breathe with a mask on and I felt that I had no energy or stamina. 
Next month I have to do the blood tests and sono  for my July endo visit.
Mother’s Day we had a cookout. Ds2 and dil don’t want to be by the unvaccinated ds1 and dil. They also refused to eat any food. So they left and the other couple came in, sigh. Trying to plan my bday celebration this weekend. Think it will have to be separate etc.
Dh going to Massachusetts the first week in June. Ds3 was traveling everywhere. He hated the hotel in Puerto Rico. Just got back from a nurses wedding in Vermont. We had to find a new lawn service. What a pain.
I found out a blogger I follow got diagnosed with thyroid cancer after battling covid. She had surgery and rai. She said the surgery was difficult but didn’t elaborate.
Enjoy the beautiful weather everyone! Check in when you can.


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## MamaBelle4

luvmarypoppins said:


> Mother’s Day we had a cookout. Ds2 and dil don’t want to be by the unvaccinated ds1 and dil. They also refused to eat any food. So they left and the other couple came in, sigh. Trying to plan my bday celebration this weekend. Think it will have to be separate etc.


I'm sorry you're going through this! That's really unfortunate. Hopefully we are turning a corner soon and hopefully things get better quickly.


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## MamaBelle4

About a year and a half ago, I was diagnosed with Hashimoto's. Since then, I've been on Levothyroxine, and it's been fine. I'm definitely not as exhausted as I used to be. 

But it has impacted my cycle. It used to be every 27 days and last for 5 days. Since I've started taking levothyroxine, it's been every 21 days and lasts for at least 7. This is not great, to be honest. I'm wondering if I should talk to my doctor about alternatives. Are the alternatives as effective or more effective?


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## Christine

MamaBelle4 said:


> About a year and a half ago, I was diagnosed with Hashimoto's. Since then, I've been on Levothyroxine, and it's been fine. I'm definitely not as exhausted as I used to be.
> 
> But it has impacted my cycle. It used to be every 27 days and last for 5 days. Since I've started taking levothyroxine, it's been every 21 days and lasts for at least 7. This is not great, to be honest. I'm wondering if I should talk to my doctor about alternatives. Are the alternatives as effective or more effective?



It's trial and error.  I never had an issue with my cycle when taking thyroid meds and I changed brands several times with no change.  Generally, if your cycle is coming to often it can be due to over medication or "hyper" thyoridism.  It may take some tweaking of your dose to find the right mix of things.


----------



## Christine

luvmarypoppins said:


> Christine- How was your vaccine?
> 
> Monday Dh, ds2 and I got our 2nd shots. Ds2 has had sore arm, tiredness, headache, brain fog and body aches. Dh only had a sore arm and I had headache, brain fog, tiredness and really sore arm yesterday. Today is good. Oh I also had more ringing in my ear than usual.
> Ds1 has to go to Orlando in July for a trade show. Dil is going and they will make it a belated honeymoon. She doesn’t want to get vaccinated because she heard there could be fertility issues? Don’t know what ds1 is doing.
> Ds3  said last weekend hospital wide they had 10 covid admissions. He is working Thursday- Friday but now I won’t feel so stressed when he comes home etc. He is going to Puerto Rico mid April.
> Hope @singing mom is doing well
> Everyone check in when you can.



@luvmarypoppins somehow I missed this post from a few weeks ago.  

My vaccine went great.  In fact, I had ZERO side effects on the 2nd dose so I'm convinced I got a shot full of water!!

Otherwise I've just been hanging out trying to return to the land of upright, walking people.  My 3 month anniversary of my surgery is coming up and I am not walking on my own.  Not walking great and using a cane outside the house, but I got rid of the crutches, boots, knee scooter (for the most part) and am walking.  My foot hurts of course, because it is so weak, but I am on the road to recovery.  Starting to feel the urge to go to Disney!! But I won't.  Maybe later this year.  My son wants me to come visit him in San Diego and then I'd do Disneyland but right now that place doesn't sound like they've got their act together yet.  They need some time.

Hope everyone is doing well!!


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## luvmarypoppins

MamaB


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## luvmarypoppins

MamaBelle - Wishing you all the best. I can’t offer any advice on this subject.
Christine - Hope you are improving and walking better.

Well the vascular surgeons office called and said they changed the follow up from a year to 6 months. So I need an aortic ct. Ds1 wants to use up some of his fmla time so he took me for thyroid and a kidney blood test for the ct. Glad I had an appointment st quest. Apparently most people didn’t. What a zoo. Next Thursday is the ct and neck sono then the 29 is the vascular surgeon. I am only doing one thing a week or it gets overwhelming I


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## luvmarypoppins

Popping in with a quick update. The vascular surgeon said that the kidney aneurysm has shrunk and the mammary artery aneurysm is stable so I don’t have to see him again until next June. PTL!
Enjoy your holiday weekend everyone!


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## Hisgirl

I just now found this thread (at least I don't think I"ve ever posted here.   )
I hope my journey can encourage someone.

Had half my thryoid removed, inconclusive biopsy, and did not have to take thryoid for over 15 years.

More nodules showed up, also inconclusive, including molecular 2nd opinion, so entire thryoid came out.

Benign.

I took one year getting normalized with a combination of T3 & T4 using Unithroid and Armour thyroid. 

I feel normal. Especially after realizing the pills give me exactly 12 hours of energy and to stop taking them at 4:30am.

No hair falling out, no huge weight gain, no worsened memory. 

I do have fatigue but not more than normal I suppose.

And my scar is hardly visible.

I hope someone who is scared or worrying life will never be the same can be encouraged. It is definitely a journey that can take a year to sort out. I hope yall can find a doctor who will consider letting you use natural dessicated thryoid along with the synthetic. Peer reviewed studies do show people can feel much better.


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## luvmarypoppins

I had my endo visit. Sono showed no signs of cancer. 
She is lowering my vitamin d to once a week because it’s too high and taking away my extra synthroid on sundays. Blood tests in early September will determine what dosing will be.
Also in September I need a bone scan. She is concerned as always how the high synthroid ruins your bones.
Check in when you can.


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## luvmarypoppins

@Christine
@macraven
And everyone 
Hope you are all doing well. Thought I would pop into this way too quiet thread
Since my last post my blood tests were good.
I have had major dental issues and had to get another tooth pulled. Now I have a temporary crown and having a root canal in 2 weeks. I have a mammogram scheduled the end of the month. Still need to call about a bone scan and make appointments for the permanent crown work. Since  I have the aortic implant I now have to be premedicated  with a dose of antibiotics before all dental procedures, sigh.
Check in when you can.


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## Dan Murphy

Hi, LMP.  Good to hear your tests were good.  Best wishes on that root canal, and a good, clean mammogram.


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## macraven

luvmarypoppins said:


> @Christine
> @macraven
> And everyone
> Hope you are all doing well. Thought I would pop into this way too quiet thread
> Since my last post my blood tests were good.
> I have had major dental issues and had to get another tooth pulled. Now I have a temporary crown and having a root canal in 2 weeks. I have a mammogram scheduled the end of the month. Still need to call about a bone scan and make appointments for the permanent crown work. Since  I have the aortic implant I now have to be premedicated  with a dose of antibiotics before all dental procedures, sigh.
> Check in when you can.



Hello to all!
I check in at times to see if anyone has posted
Glad you updated us on how you are doing !

I know what you are going thru as had two molars removed this summer also
I always have to take 4 antibiotic pills an hour prior for any type of dental appointment


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## Christine

@luvmarypoppins
@macraven

Thanks for the earlier tag!  Helps me get back to the thread.  Sometimes I come over and no one has posted in so long!  I'm doing well.  It's been a long recovery from my foot surgery.  My left foot is no longer flat, my posterior tendon no longer hurts, but the outside of my foot hurts and that's directly related to the surgery.  The recovery for this surgery is 12-18 months so my doctor isn't getting too excited about anything yet but I think he also thinks this pain probably should not still be there from the surgery.  We shall see.  Anyhow, on the thyroid front, I had my 6 month check up in August.  He wanted me to do an ultrasound because it had been 5 years.  I put it off until March of next year because I'm just not comfortable going into a healthcare setting where someone is up in my face with the Delta variant surge (or at least it was in August).  Things are settling down a bit and they are mandating vaccines for healthcare workers now so March should be good.

My office made us return to work last week.  We are on a hybrid telework model so for October we only go in for 2 days per week but in November it's 3 days.  Everyone is disgruntled that they've rushed this (particularly since the vaccine mandate cannot be enforced until November 22) but I'm working in defense and our leadership is concerned about work culture now, China threats, etc.  Not that me, a financial person, makes a dent in defending against China, lol!!!  So I went to work on Monday and it was pretty empty.  Tuesday was a different story and I was around more people than I had been in 18 months so I'm getting nervous.  I had my last Pfizer dose in April (in hindsight wish I had Moderna) so it sounds like my vaccine antibodies are probably pretty low now.  I don't legitimately qualify for a booster although I'm sure I could get one without too much trouble so I'll probably do that in the next few weeks.

Otherwise, I'm pretty bored most days and longing for some sort of vacation.  The Disney crowds look insane right now and I wouldn't get near that place COVID or no COVID because of the 50th anniversary.  It might be next Fall before I get back.  I want the parks to be back to 100% normal when I go and I hope that's true for next year.

Oh well, glad everyone is doing well!


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## disneyboundteacher

I was diagnosed with Hashimotos disease 11 years ago. Does anyone else experience fibromyalgia symptoms?


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## macraven

I have not experienced fibromyalgia at all


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## luvmarypoppins

Just wanted to say Happy Thanksgiving all!
Everyone coming here tomm.

The root canal was 2 hour. The permanent crown does not fit well. I may have to go to a gum specialist.
Mammogram was good. Got a flu shot.
Getting covid booster Dec4th.
Still need blood tests, neck sonogram and dexa scan scheduled for December.
My cousins daughter and family are checking into Yacht Club today

Check  in when you can.


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## macraven

Hope all have a wonderful Thanksgiving tomorrow!


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## Ravensorrow

disneyboundteacher said:


> I was diagnosed with Hashimotos disease 11 years ago. Does anyone else experience fibromyalgia symptoms?


I have Hashis and Fibromyalgia.  Some days are so bad.


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## luvmarypoppins

Just popping in to say Merry Christmas and Happy New Year 2022 to all!
Today I got my blood tests in prep for my pcp visit and endo visit in January. My endo writes on the script for Jan or Feb. So I had to say - oh my dr. means make an appointment to see me then at the front desk. Gotta do what I gotta do. With covid numbers spiking around here there is no way I want to go back there again. My endo appointment is Jan. 20 and the pcp is Jan, 4.
Now I still need a neck sono and dexa scan.
Oldest ds just got a job offer today for a job he really wanted and yesterday he got an early bday present and saw the Dallas Cowboys game. Last weekend was his wife’s early birthday present, They went to the Amish country in Pennsylvania. He got a picture with an Amish author I follow. Sherry Gore. I even said hi on the phone to her! 
Next up I need to look into some genetic testing that could affect the ds and more dental stuff in that never ending saga.
Ds3 has been assigned to covid icu a lot. He said fully vaccinated people are getting breakthrough cases and of course he will expect the Christmas and New Years waves . Sigh.
Check in when you can!


----------



## lisaviolet

Hi all,

Need some assistance.  Had a thyroidectomy, just under two months ago.

When I first took Synthroid I felt fantastic but exhausted (I know! But so many other symptoms disappeared that I was elated hence fantastic), but my TSH rose to 29 - so a decision was made to increase dosage early (My T4 was low as well; no T3 tested).

Things went well & then suddenly about two to three weeks in I feel like the floor has dropped out. Mentally, physically, brain fog etc. I know I have to push through and  wait it out. I believe  my six week blood work is the middle of June.

But is this normal? To be such a rollercoaster? I am dumbfounded to be on both ends  - "wow" to "horrid" in such a short time. And the horrid feels like being numb. And it came quickly and has surprised & unnerved me. I believe it is the medication, meaning something not balancing,  as I felt other sudden changes as well.

My endocrinologist has asked me to wait for six to eight weeks unless I felt signs that would deem being over-medicated such as heart palpitations. I have no signs in that area. 

Thank you in advance for any insight to help me feel more hopeful about the timeline.


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## macraven

I have issues with my thyroid at times as my level can drop or rise
I have been on it for over 35 years and still have issues so it stays in a correct range

Four years ago my doc switched me to synthoid  only
I can’t take the generic meds for my issue
Even a one pinch off my needed level causes issue for me

I did improve  using brand name and not generic


----------



## Haimia

Same here for name brand synthroid.  I also needed to add T3 or Cytomel (generic is liothyronine) as I do not absorb T4 well.  It took a DO doctor who had similar problems to get me where I am at now.  It is difficult to keep on the same dose as doctors do not like my low TSH, but I have no thyroid to stimulate (the DO retired!).


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## luvmarypoppins

@lisaviolet   I hope your blood tests give you some answers. Wishing you all the best. I take name brand synthroid since I have thyroid  cancer
@Christine   Hope your trip was good 
Hope everyone is doing well. Check in when you can.
My update. Our whole family except oldest ds had covid. Ds3 had it twice and Dh had bounce back covid after his Paxlovid pills. 
Went to cardiologist yesterday. He is adjusting my meds as my bp is too high for this aortic implant. I am seeing the vascular surgeon on Tues. My l leg has a swelling problem. Between these other meds I run to the bathroom a lot. So frustrating. I don’t see the endo till sept. Might go to Disney in Oct,
Ds3 has graduated again and now he needs to take the family nurse practitioner test to be certified. He works part time in the ICU’s and picks up extra shifts. They are desperate there.


----------



## Christine

luvmarypoppins said:


> @lisaviolet   I hope your blood tests give you some answers. Wishing you all the best. I take name brand synthroid since I have thyroid  cancer
> @Christine   Hope your trip was good
> Hope everyone is doing well. Check in when you can.
> My update. Our whole family except oldest ds had covid. Ds3 had it twice and Dh had bounce back covid after his Paxlovid pills.
> Went to cardiologist yesterday. He is adjusting my meds as my bp is too high for this aortic implant. I am seeing the vascular surgeon on Tues. My l leg has a swelling problem. Between these other meds I run to the bathroom a lot. So frustrating. I don’t see the endo till sept. Might go to Disney in Oct,
> Ds3 has graduated again and now he needs to take the family nurse practitioner test to be certified. He works part time in the ICU’s and picks up extra shifts. They are desperate there.


 @luvemarypoppins--thanks for the update.  I forget to come here.  My trip was pretty good.  Still didn't feel 100% myself after my April COVID infection but I did okay.  I was feeling better by the end of the trip, but then got home and got all congested again.  Might be allergies but it seems worse.  Today, I think I might just have caught a small cold that is exacerbating my respiratory tract that was weak after COVID.  

I've heard about the rebound with Paxlovid but I still sort of wish I had taken it as my symptoms got pretty intense.  I have heard the bounce back is annoying but it never gets too bad.  
Disneyland was fun.  I still prefer Disneyworld (DL fans are not liking that!!!) but I just think its more "grand" and more "vacation/resort" feeling, not that there is ANYTHING wrong with DL.  It was SO crowded though.  I've never been in WDW with that sort of crowd density.  No wonder I have a cold!!

I go to the endo in August for my usual check up!


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## macraven

i am delighted this thread has new life in it


Hope it continues and others add to it


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## lisaviolet

Thank you so much everyone for your experience & advice. It is still awful but trying to remain optimistic. My new labs are back and still not in normal range, but better.


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## macraven

I signed up with AbbVie program for my synthroid by mail order

My insurance program did not cover brand name
I couldn’t take the generic and had so many issues with it not being at the exact level i needed daily.

What I was paying for my meds, has now dropped to $25 a month 

I found the information by google
I do hope this info will help others


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## Christine

macraven said:


> I signed up with AbbVie program for my synthroid by mail order
> 
> My insurance program did not cover brand name
> I couldn’t take the generic and had so many issues with it not being at the exact level i needed daily.
> 
> What I was paying for my meds, has now dropped to $25 a month
> 
> I found the information by google
> I do hope this info will help others



Just curious if they do anything to protect your thyroid meds from heat?  Thyroid medication is extremely senstive to heat and from May through October here, we have too many 90 degree days with, in my case, too much time with the meds sitting on the mail truck.  

I ended up switching to Levoxyl which is a brand name that is treated as a generic.  Over the past 4 years, my thyroid levels have been amazingly stable on it whichi s actually more than I can say for Synthroid where occasionally, for no known reason, I trend hard to the hyperthyroid state.  

It used to pay $20 for a 3 month supply (I get one month "free" if I do a 90 day supply) so it's generally around $10 per month.  I just picked up my latest batch and it was only $17.23 so obviously the monthly price has gone down.


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## disneychrista

I just had my annual blood work and as I suspected my TSH is high again. My T4 has always been at the low end of normal but still "normal." In addition to that my ferritin & B12 are both low. I expect the doctor to just send in a script for a higher dose of levothyroxine and tell me to take iron & B12. But I got a call yesterday that she wants to me to come in to go over the results, should I be worried? When I first became Hypothyroid, she only called and said you need to take levo, I called in a Rx. I actually found out first by having Walmart pharmacy send me a text saying my Rx was ready to pick up. 

Does this mean something more is going on? Or am I just over thinking?


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## Caseheidi

I know that my Endo likes to touch base every year and review how things are going.  He also likes to do an ultrasound each year (I had my thyroid removed due to cancer) and he gets a reading on more then just my TSH.  It could be routine, or they could want to do further testing to make sure there are not other factors. If you have not seen her in person in a while, it may just be time to meet in person.  Good luck, hope things are okay!


----------



## disneychrista

Caseheidi said:


> I know that my Endo likes to touch base every year and review how things are going.  He also likes to do an ultrasound each year (I had my thyroid removed due to cancer) and he gets a reading on more then just my TSH.  It could be routine, or they could want to do further testing to make sure there are not other factors. If you have not seen her in person in a while, it may just be time to meet in person.  Good luck, hope things are okay!


I had my regular well check on Monday last week. So this is just to discuss results. My daughter said Hopefully it is just complicated & not scary. So that is one way to look at it. To me, as a lay person. I see the results and say okay up the levo,  take iron & b12. But to a doctor it could mean something else completely.


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## luvmarypoppins

Happy Thyroid Cancer Awareness Month!
@Christine
@macraven 
Hope everyone here is doing well.
I went for my 6 month cancer check up at the endo’s Monday. I had asked the sono tech in addition to the regular stuff  to take pictures by my left jaw as it was hurting. Same side as the dissection and where he cut the nerve. Well the endo said she sees 2 lymph nodes that shouldn’t be there. They are cylindrical and too small to biopsy yet but she says they are showing fatty characteristics so she thinks it’s dental related? Dh snd I are leery of this since last time , cancer #2 she said she thought it was from a cold. Also the dr. Who biopsied me last time said she thought there were fat cells in the needle. Um no. Wrong. they were cancer cells. She said she has to tell me it could be cancer again. The plan is to have another sono in November and compare. I am sure not looking forward to round 3 but hopefully things will resolve.
The cardiologist is still adjusting meds but my bp is getting better and acceptable level for the aortic implant.
Ds3 passed his nurse practitioner boards!
My Dh is going to Germany and Sweden  on business sun.For 2 weeks. Coming home a day and going on another trip. He also has to schedule a Cali. Trip too. Somewhere in all of this we are thinking of going to Disney in October.
Check in when you can.
Wishing everyone all the best!


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## macraven

luvmarypoppins said:


> Happy Thyroid Cancer Awareness Month!
> @Christine
> @macraven
> Hope everyone here is doing well.
> I went for my 6 month cancer check up at the endo’s Monday. I had asked the sono tech in addition to the regular stuff  to take pictures by my left jaw as it was hurting. Same side as the dissection and where he cut the nerve. Well the endo said she sees 2 lymph nodes that shouldn’t be there. They are cylindrical and too small to biopsy yet but she says they are showing fatty characteristics so she thinks it’s dental related? Dh snd I are leery of this since last time , cancer #2 she said she thought it was from a cold. Also the dr. Who biopsied me last time said she thought there were fat cells in the needle. Um no. Wrong. they were cancer cells. She said she has to tell me it could be cancer again.
> The cardiologist is still adjusting meds but my bp is getting better and acceptable level for the aortic implant.
> Ds3 passed his nurse practitioner boards!
> My Dh is going to Germany and Sweden  on business sun.For 2 weeks. Coming home a day and going on another trip. He also has to schedule a Cali. Trip too. Somewhere in all of this we are thinking of going to Disney in October.
> Check in when you can.
> Wishing everyone all the best!


I do hope it is not cancer…!
Have you in my prayers


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## Dan Murphy

luvmarypoppins said:


> Happy Thyroid Cancer Awareness Month!
> @Christine
> @macraven
> Hope everyone here is doing well.
> I went for my 6 month cancer check up at the endo’s Monday. I had asked the sono tech in addition to the regular stuff  to take pictures by my left jaw as it was hurting. Same side as the dissection and where he cut the nerve. Well the endo said she sees 2 lymph nodes that shouldn’t be there. They are cylindrical and too small to biopsy yet but she says they are showing fatty characteristics so she thinks it’s dental related? Dh snd I are leery of this since last time , cancer #2 she said she thought it was from a cold. Also the dr. Who biopsied me last time said she thought there were fat cells in the needle. Um no. Wrong. they were cancer cells. She said she has to tell me it could be cancer again. The plan is to have another sono in November and compare. I am sure not looking forward to round 3 but hopefully things will resolve.
> The cardiologist is still adjusting meds but my bp is getting better and acceptable level for the aortic implant.
> Ds3 passed his nurse practitioner boards!
> My Dh is going to Germany and Sweden  on business sun.For 2 weeks. Coming home a day and going on another trip. He also has to schedule a Cali. Trip too. Somewhere in all of this we are thinking of going to Disney in October.
> Check in when you can.
> Wishing everyone all the best!


Good morning, LMP.  Wishing you the best, in my prayers. 's

Congratulations to you son on passing his boards.  Is he one of the boys I met so many years ago at the S/D?


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## Christine

@luvmarypoppins - well I had long response typed of and my wrist must have hit something because, whoosh, wiped away.

Anyway, I was just at the endo yesterday for my 6 month check.  All is well.  Wishing you the best on this health scare.  The waiting is just terrible.

Not sure when I last posted, but my son is living in San Diego and I visited him in June.  I don't think he'll ever move back and I can't even come up with a reason why he'd be better off here.  San Diego is wonderful.  I know every place has its downsides, but it was hard for me to find many faults.  Well, it was SO sunny that I got weird sunburns IN THE CAR.  Sheesh.

Otherwise, my life is peacefully dull!


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## luvmarypoppins

Dan Murphy said:


> Good morning, LMP.  Wishing you the best, in my prayers. 's
> 
> Congratulations to you son on passing his boards.  Is he one of the boys I met so many years ago at the S/D?


Yes Dan, he is the younger one you saw.
The other one you saw, middle ds, is married 4 years and an engineer .


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## Dan Murphy

luvmarypoppins said:


> Yes Dan, he is the younger one you saw.
> The other one you saw, middle ds, is married 4 years and an engineer .


   Time flies way too fast, LMP.  Seems like they were young teens back then.  Now, grown up and unrighteous citizens.


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## luvmarypoppins

Well I just saw that Sarah Huckabee Sanders had thyroid cancer surgery. She said she had her thyroid and surrounding lymph nodes taken out and now “I am cancer free”  Um her dr. said it’s stage 1 papillary and she needs rai. I think her dr. needs to educate her a little more. 
But I am glad thy cancer is getting some  publicity.


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## luvmarypoppins

And in totally non thyroid related news…
We are going to Disney World. First time back in 3 years. Not having big expectations.
Just want to get my mind off the upcoming repeat sonogram.
Dh,ds and me. Ds can push the wheelchair. There is no way with this aortic implant I am doing a lot of walking. And I get to have my own personal nurse with me if needed.
We are staying 5 nights. 2 at Yacht Club( ;fainting at the price but Swan was sold out one day) and then the Swan for 3 days. Don’t like the non Disney bus aspect there now. Going  Oct. 29-Nov. 3.


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## HeatherLassell

I just got diagnosed with thyroid cancer on Nov 2nd.  My birthday.  Yup.  I have 3 nodules.  Two on the right side (biopsy result = cancerous) and one on the left side.  I am waiting for the biopsy results of the one on the left to find out if I'm losing my whole thyroid or half.  

I'm stressed out.  I love to sing and my dr (ENT) basically said point blank I won't be able to sing again.  Yes, I am already thinking I don't want him do the surgery.  I know there are risks and I see that some people can take up to a year for their voice to come back...but he basically just said "no you won't be able to yell or sing".  Like is he just saying he is quick with the surgery and doesn't take care around the vocal nerves?  Am I overreacting?  Singing is one of my only joys in life.   I'm getting depressed just thinking about it...


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## Haimia

*Find a surgeon who will use necessary items to protect your vocal cords during surgery.  I can't think of the name right now, but it is done!  *


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## Caseheidi

HeatherLassell said:


> I just got diagnosed with thyroid cancer on Nov 2nd.  My birthday.  Yup.  I have 3 nodules.  Two on the right side (biopsy result = cancerous) and one on the left side.  I am waiting for the biopsy results of the one on the left to find out if I'm losing my whole thyroid or half.
> 
> I'm stressed out.  I love to sing and my dr (ENT) basically said point blank I won't be able to sing again.  Yes, I am already thinking I don't want him do the surgery.  I know there are risks and I see that some people can take up to a year for their voice to come back...but he basically just said "no you won't be able to yell or sing".  Like is he just saying he is quick with the surgery and doesn't take care around the vocal nerves?  Am I overreacting?  Singing is one of my only joys in life.   I'm getting depressed just thinking about it...


I would advise to get another ENT to work with.  First, you need to be comfortable with who is doing your surgery.  Second, I can't believe he would say such a thing to you.  Not a good comfort.  I had my full thyroid removed in 2019, and yes my voice was affected.  But I can still sing and yell.  Now, I have to admit that my singing register is lower then it was and my voice sometimes gets tired when singing longer songs, but I don't practice and work to build the endurance.  But I will also say that my ENT said this was unusual.  He was surprised to hear my croak the day after surgery, and at follow up.  And I have spoken to many who never had any effects to their voice.  I would ask for another opinion, and make sure the new doctor realizes that singing is important to you and you want to preserve your voice as much as possible.

Good Luck!  I hope things work out for you.


----------



## HeatherLassell

Caseheidi said:


> I would advise to get another ENT to work with.  First, you need to be comfortable with who is doing your surgery.  Second, I can't believe he would say such a thing to you.  Not a good comfort.  I had my full thyroid removed in 2019, and yes my voice was affected.  But I can still sing and yell.  Now, I have to admit that my singing register is lower then it was and my voice sometimes gets tired when singing longer songs, but I don't practice and work to build the endurance.  But I will also say that my ENT said this was unusual.  He was surprised to hear my croak the day after surgery, and at follow up.  And I have spoken to many who never had any effects to their voice.  I would ask for another opinion, and make sure the new doctor realizes that singing is important to you and you want to preserve your voice as much as possible.
> 
> Good Luck!  I hope things work out for you.


I really appreciate your kind words.  I am going to get in touch with Manitoba Cancer Care to get some resources.  I have no idea what kind of dr I am looking for or how to find one.  But you're so right, I can't believe he said it either.  I definitely want to find a dr who will do it and pay extra special attention to preserving my vocal nerves.  I don't want to just be alive.  I want quality of life.  This dr makes me feel like I *will* have vocal changes 100% and that they're permanent.  (I do know there is always a risk and that it can take up to a year for your voice to be back to 'normal')  Scared me off even having the surgery to be honest.


----------



## Haimia

*I had total Thyroidectomy, also.   I was unable to sing (I was unable to sing BEFORE the surgery!!!!!).  So, really no change for me.  I am glad you are searching for additional sources. You need an ENT to do the surgery-that's who done mine.  An endocrinologist handles the thyroid - however, my endocrinologist immediately stated I was a diabetic.  I told him "No" as my husband is one and I knew I was not.  He insisted and tested me.  I was not there for diabetes, I was there for my thyroid.  Test came back negative for diabetes.  Needless to say, I found someone else to handle my thyroid meds!*


----------



## HeatherLassell

Haimia said:


> *I had total Thyroidectomy, also.   I was unable to sing (I was unable to sing BEFORE the surgery!!!!!).  So, really no change for me.  I am glad you are searching for additional sources. You need an ENT to do the surgery-that's who done mine.  An endocrinologist handles the thyroid - however, my endocrinologist immediately stated I was a diabetic.  I told him "No" as my husband is one and I knew I was not.  He insisted and tested me.  I was not there for diabetes, I was there for my thyroid.  Test came back negative for diabetes.  Needless to say, I found someone else to handle my thyroid meds!*


That's who I have been dealing with.  An ENT.  He did the biopsy of the nodules for me.  

Drs can be pretty frustrating sometimes.


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## luvmarypoppins

Heather - I would seek another opinion too.
My experience was not normal though. After my surgery for thyroid cancer that was actually 3 surgeries in 24 hours my one vocal cord is still bruised 12 years later. I don’t have a good singing voice as my one cord is weak.
Make sure your surgeon uses the vocal cord monitoring machine. I had this during my recurrence as well.
They can also scope you while you are awake and check your vocal cords. (Only slightly uncomfortable). This can be done in surgeons office or ent if they have the equipment.
Wishing you all the best.


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## luvmarypoppins

I am having to wait to schedule the repeat sonogram as my Dh got a cold in Disney that I seemed to get a little of.
This could cause the lymph nodes to swell and give a false positive so I might send a little note to my endo on the patient portal and see what she says to do.


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## HeatherLassell

luvmarypoppins said:


> Heather - I would seek another opinion too.
> My experience was not normal though. After my surgery for thyroid cancer that was actually 3 surgeries in 24 hours my one vocal cord is still bruised 12 years later. I don’t have a good singing voice as my one cord is weak.
> Make sure your surgeon uses the vocal cord monitoring machine. I had this during my recurrence as well.
> They can also scope you while you are awake and check your vocal cords. (Only slightly uncomfortable). This can be done in surgeons office or ent if they have the equipment.
> Wishing you all the best.


Thank you for that information.  I think I will talk to my family Dr. about my concerns once I hear back the biopsy results of the other nodule.  I don't know how it works to get a referral to another ENT.


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## Christine

@HeatherLassell, While I'm not a singer, I have had my whole thyroid removed (it took two surgeries) and a lot of cleaning out.  I can sing (badly) and yell also.

There have been reports of people who have very invasive thyroid cancer and having the nerve damaged because the surgeon is trying to "scrape" so much around it.  OR, they get a very bad surgeon.  If your surgeon is telling you to expect that, he's obviously had some of this happen in his practice.

Also, sounds as if you're in Canada so I know protocols can be different, but I only had one nodule.  They thought they'd just leave the "good" half in.  After surgery upon full pathology they found microscopic dots of thyroid cancer outside the nodule so I had to go back in and get it out.

I cannot for the life me understand why they'd leave half your gland in even if the nodules on the other side are benign.  What and wait until those act up?  Nodules can grow very large over time.


----------



## HeatherLassell

Christine said:


> @HeatherLassell, While I'm not a singer, I have had my whole thyroid removed (it took two surgeries) and a lot of cleaning out.  I can sing (badly) and yell also.
> 
> There have been reports of people who have very invasive thyroid cancer and having the nerve damaged because the surgeon is trying to "scrape" so much around it.  OR, they get a very bad surgeon.  If your surgeon is telling you to expect that, he's obviously had some of this happen in his practice.
> 
> Also, sounds as if you're in Canada so I know protocols can be different, but I only had one nodule.  They thought they'd just leave the "good" half in.  After surgery upon full pathology they found microscopic dots of thyroid cancer outside the nodule so I had to go back in and get it out.
> 
> I cannot for the life me understand why they'd leave half your gland in even if the nodules on the other side are benign.  What and wait until those act up?  Nodules can grow very large over time.


From my research there is always a chance that you may have to have surgery a second time to have the other half removed.  But most women have nodules that will never actually effect your life since they are very small and benign.  Nodules apparently grow very slowly.  And once half is removed I will be monitored after for thyroid function and checking on the nodule on that side.

Mine are also very small but the one came back as papillary cancer.  Which is why they'll take one side.  From what I can tell, they do this so (hopefully) you're not stuck on meds the rest of your life as half a thyroid can take over the work of the whole thyroid.  (And sometimes it can't).

Yes I'm in Canada.  I've spoken to Cancer Care Manitoba and now I feel much better.  I am passing on the fax number to my family Dr. so he can send it in to them to get me a referral.


----------



## Haimia

*I had the choice of having full thyroidectomy or only half.  I choose to do full, as my thyroid was not working the way it should prior to having nodules.  I did not want to have the remaining half left to mess with the medication and have to keep adjusting because the other half was still there.  Also, if cancer was found, they would have had to take the remaining half out anyway and endocrinologist was betting on cancer.  Well, he got that wrong as well as my being diabetic!  And, by the time I had surgery, he had left the practice.  Grr.*


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## macraven

OMG……


----------



## HeatherLassell

Haimia said:


> *I had the choice of having full thyroidectomy or only half.  I choose to do full, as my thyroid was not working the way it should prior to having nodules.  I did not want to have the remaining half left to mess with the medication and have to keep adjusting because the other half was still there.  Also, if cancer was found, they would have had to take the remaining half out anyway and endocrinologist was betting on cancer.  Well, he got that wrong as well as my being diabetic!  And, by the time I had surgery, he had left the practice.  Grr.*


Awe man.  I was told the other day that my thyroid is working well within normal levels.  So I'm really hoping we only have to take out half.

Sorry you've had such a hard time.


----------



## HeatherLassell

macraven said:


> OMG……


Are you ok?


----------



## luvmarypoppins

Well that little cold I had landed me in the er and then overnight in the hospital. I woke up not being able to breathe well Sat. at 3am.
Ds drove me to the hospital and Dh followed.
They gave me iv steroids and breathing treatments. Tested for 17 viruses - nothing. 
Saw nodules on the ct scan in lungs so now my pcp who I saw yesterday will talk to endo about a follow up ct or pet scan. Could just be viral reaction. Also saw 2 swollen mammary lymph nodes so go get a mammogram she said. Always something,
Thanksgiving Blessings to all.


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## HeatherLassell

luvmarypoppins said:


> Well that little cold I had landed me in the er and then overnight in the hospital. I woke up not being able to breathe well Sat. at 3am.
> Ds drove me to the hospital and Dh followed.
> They gave me iv steroids and breathing treatments. Tested for 17 viruses - nothing.
> Saw nodules on the ct scan in lungs so now my pcp who I saw yesterday will talk to endo about a follow up ct or pet scan. Could just be viral reaction. Also saw 2 swollen mammary lymph nodes so go get a mammogram she said. Always something,
> Thanksgiving Blessings to all.


Sorry to hear that. I hope you start feeling better soon.


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## luvmarypoppins

Just popping in to wish you all a Merry Christmas and happy holidays to all.
Here’s to a Happy and Healthy New Year 2023.
I already have 2 appointments in January lol.


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## HeatherLassell

Small update: I'm seeing a Dr. at Manitoba Cancer Care on Friday.


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## Caseheidi

Hope things go well Heather, and that this is a Doctor who will be a better fit.

I have my annual ultra sound and blood work next week, as well as an appt. with my Endo. on January 3rd.  Not expecting any surprises, but always a little anxious to get the results.  My Mom had a relapse of her Breast Cancer last spring (stage 4) and my Aunt who had Thyroid Cancer 30 years ago had a relapse and then another kind of cancer that she died from.  This is the reason I try to keep on top of things and make sure to go annually to visit my Endo.

Anyway, I hope all of you have a wonderful Holiday Season and enjoy time with your families!


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## luvmarypoppins

HeatherLassell said:


> Small update: I'm seeing a Dr. at Manitoba Cancer Care on Friday.


Wishing you all the best


----------



## HeatherLassell

Caseheidi said:


> Hope things go well Heather, and that this is a Doctor who will be a better fit.
> 
> I have my annual ultra sound and blood work next week, as well as an appt. with my Endo. on January 3rd.  Not expecting any surprises, but always a little anxious to get the results.  My Mom had a relapse of her Breast Cancer last spring (stage 4) and my Aunt who had Thyroid Cancer 30 years ago had a relapse and then another kind of cancer that she died from.  This is the reason I try to keep on top of things and make sure to go annually to visit my Endo.
> 
> Anyway, I hope all of you have a wonderful Holiday Season and enjoy time with your families!



Thank you, I hope the same!  Hoping you get good results!  Happy holidays!


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## HeatherLassell

luvmarypoppins said:


> Wishing you all the best


Thank you so much!


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## luvmarypoppins

Caseheidi said:


> Hope things go well Heather, and that this is a Doctor who will be a better fit.
> 
> I have my annual ultra sound and blood work next week, as well as an appt. with my Endo. on January 3rd.  Not expecting any surprises, but always a little anxious to get the results.  My Mom had a relapse of her Breast Cancer last spring (stage 4) and my Aunt who had Thyroid Cancer 30 years ago had a relapse and then another kind of cancer that she died from.  This is the reason I try to keep on top of things and make sure to go annually to visit my Endo.
> 
> Anyway, I hope all of you have a wonderful Holiday Season and enjoy time with your families!


Wishing you all the best too Caseheidi


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