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Old 07-18-2013, 11:54 PM   #2446
angwill
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Originally Posted by mrsklamc View Post
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.
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Old 07-19-2013, 12:03 AM   #2447
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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
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Old 07-21-2013, 09:54 PM   #2448
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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.
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Old 07-22-2013, 01:20 AM   #2449
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Originally Posted by luvmarypoppins View Post
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.
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Old 07-22-2013, 05:36 AM   #2450
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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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Old 07-22-2013, 10:00 AM   #2451
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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.
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Old 07-23-2013, 11:42 AM   #2452
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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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Old 07-26-2013, 04:12 PM   #2453
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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.
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Old 07-26-2013, 07:34 PM   #2454
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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.
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Old 07-26-2013, 08:44 PM   #2455
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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.
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Old 07-26-2013, 11:19 PM   #2456
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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...

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Old 07-26-2013, 11:36 PM   #2457
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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.

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Old 07-26-2013, 11:42 PM   #2458
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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
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Old 07-28-2013, 07:05 AM   #2459
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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!
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Old 07-28-2013, 01:01 PM   #2460
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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.
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