The THYROID Thread - Page 136 - The DIS Discussion Forums

SingingMom · 06-25-2012, 11:10 AM

Quote:

Originally Posted by luvmarypoppins

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 · 06-25-2012, 05:49 PM

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 · 06-25-2012, 06:30 PM

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 · 06-25-2012, 10:45 PM

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 · 06-26-2012, 10:41 AM

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 · 06-27-2012, 11:34 AM

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 · 06-27-2012, 12:15 PM

Quote:

Originally Posted by jepressley

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 · 06-30-2012, 05:59 PM

Thanks, Christine.

Mariep26 · 07-01-2012, 05:36 PM

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!!

cm8 · 07-04-2012, 10:55 AM

Quote:

Originally Posted by luvmarypoppins

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

Quote:

Originally Posted by SingingMom

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 · 07-04-2012, 11:18 AM

Quote:

Originally Posted by cm8

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 · 07-05-2012, 11:16 AM

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 · 07-06-2012, 03:06 PM

Quote:

Originally Posted by 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

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!

dischick4778 · 07-06-2012, 05:18 PM

Quote:

Originally Posted by luvmarypoppins

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 · 07-10-2012, 04:16 PM

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.

06-26-2012, 10:41 AM	#2030
becky_AK DIS Veteran Join Date: Jul 2006 Location: Boise, ID Posts: 1,217	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 __________________ "All our dreams can come true, if we have the courage to pursue them." --Walt Disney www.facebook.com/bburchwhite

07-01-2012, 05:36 PM	#2034
Mariep26 DIS Veteran Join Date: May 2011 Posts: 541	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!! __________________ June 2010 - Swan & Dolphin, March 2012 - ASMo Toy Story room, December 8-15, 2012 - AoA Cars Suite, Feb 25 - Mar 1, 2013 - BLT LV Studio, May 9-13 - AoA Cars Suite, August 19-23, 2013 - BLT TPV Studio - Jax's 5th Birthday!!! - Nov 2-9, 2013 AoA Nemo. Me: Marie (33), DH: Neil (41), DS: Jax (4), DD: Presley (3) New DVC Owner at Bay Lake Tower and Animal Kingdom!

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06-25-2012, 05:49 PM	#2027
jepressley Earning My Ears Join Date: Jun 2012 Posts: 4	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

06-25-2012, 06:30 PM	#2028
mrsklamc I apologize in advance, but what is a click clack? Join Date: Oct 2006 Location: Husker living in Hoosierland. Posts: 8,312	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.

06-25-2012, 10:45 PM	#2029
luvmarypoppins I am debating whether to put a new one back on his O.K. who is the sista here right now? ((Hug)) Join Date: Aug 2003 Posts: 9,299	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.

06-27-2012, 11:34 AM	#2031
jepressley Earning My Ears Join Date: Jun 2012 Posts: 4	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

06-30-2012, 05:59 PM	#2033
jepressley Earning My Ears Join Date: Jun 2012 Posts: 4	Thanks, Christine.

07-05-2012, 11:16 AM	#2037
luvmarypoppins I am debating whether to put a new one back on his O.K. who is the sista here right now? ((Hug)) Join Date: Aug 2003 Posts: 9,299	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

07-10-2012, 04:16 PM	#2040
luvmarypoppins I am debating whether to put a new one back on his O.K. who is the sista here right now? ((Hug)) Join Date: Aug 2003 Posts: 9,299	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.