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#1 Sept. 29, 2017 20:38:24

SueAndHerZoo
From: New England
Registered: 2013-03-27
Posts: 426
Profile  

Stored thyroid tissue after TT?

So I went to see the doc today to talk about my very high TSH. I told her I wanted to increase my Synthroid slowly and gradually since I'm so sensitive to it and she's ok with that. I asked if she thought my going gluten and soy free had anything to do with the sudden rise in TSH and she said no, she thought I probably had some remnants of thyroid tissue in my body that was providing thyroid hormone and now it's finally dead or gone. She reminded me that the average person uses about 200 mcg. of Synthroid after a TT and that me having been on only 88 mcg since my TT was kind of strange, and that my body must have been storing some hormone or tissue (think she mentioned liver?) for the past four years.

Anyone ever heard that theory? I really don't know if I'm buying that but I guess it's possible?
Sue


Goiter for 25 years, diagnosed with Graves in 2006, Methimazole with one 12-month remission, total thyroidectomy July 16, 2013.

“People don't always remember what you say or what you do, but they always remember the way you made them feel.”

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#2 Sept. 30, 2017 04:42:56

Liz1967
Registered: 2014-02-25
Posts: 208
Profile  

Stored thyroid tissue after TT?

I personally know no one on 200 micrograms of synthroid. The average for a 150 lb adult would be 100 to 125 according to Synthroid dosing schedules (1.7 mcg/kg/day). I am on 94, most people I know are at 88 to 100. Requirement also dependent on age. I have had ultrasound post TT looking for remnants and if there are any, would be microscopic! My surgeon treats every TT like you have cancer, he gets it all out, so with a TSH of 1, I know I am getting enough. It is of course possible you had remnant producing hormone all these years, but I would think hormone production would be erratic as you still have Graves. My instinct would be to find a good endo. The solution is still increasing Synthroid, but with that big a jump in TSH, I would want another opinion. You could also get an ultrasound from your surgeon, as a nonfunctioning thyroid remnant would still be there, just not working.

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#3 Sept. 30, 2017 10:44:09

SueAndHerZoo
From: New England
Registered: 2013-03-27
Posts: 426
Profile  

Stored thyroid tissue after TT?

I just went back and looked through all my notes of dosing from TT to now. It seems I've never been able to keep a stable level for more than 9 months (this latest run). Part of the appeal of choosing to have a TT was so that I could get off the rollercoaster and have a consistent level by medication only. Appears that's not working for me… at least not yet.

Probably just coincidence but the last time that I had a drastic rise in TSH was last September: I was at 84 mcg a day 7 months later shot up to TSH of 4.6. Decided to switch to brand instead of generic (thinking maybe that's why my TSH kept changing) and went up to 94 mcg. That took my TSH crashing down to .37. Went back down to 88 where I've been for 9 months.

I had been seeing an Endo up until 6 months ago. I never really liked him and it was a real hassle to get to his office every few months just to have him read me the lab result (which I already had from the online portal). Then he would pend 20 minutes telling me about his personal accomplishments. I decided since all he was doing was ordering blood labs and writing scripts, my internal medicine doc could do that so I stopped seeing him.

So you think I should look for another endo and have them look at this rollercoaster or just keep chasing the curve? Does anyone find diet changes affect your TSH? This is so maddening because I am sensitive to changes in doses and go feel badly each time I change a dose, which I seem to be doing every few months.

Thanks for your thoughts.
Sue


Goiter for 25 years, diagnosed with Graves in 2006, Methimazole with one 12-month remission, total thyroidectomy July 16, 2013.

“People don't always remember what you say or what you do, but they always remember the way you made them feel.”

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#4 Sept. 30, 2017 10:59:55

Liz1967
Registered: 2014-02-25
Posts: 208
Profile  

Stored thyroid tissue after TT?

Requirements do change, things like weight gain/loss, estrogen replacement, steroids, maybe even gut bacteria as the gut is where T4 is mainly converted to T3. I have remained stable pretty much for 4 years. TSH has never been above 4 or below 1, and that variation was because in the beginning, I did mess around with dose. I am postmenopausal, no estrogen replacement, no weight or diet changes so except for getting older, I would not expect any changes anyway. I have not changed my diet so not sure how or if that affects things. I have been on levothyroxine manufactured by Lannett all along.

I was not thrilled with my endo, found nurse practitioner in internist office can do as well, but in your case, with the sudden change, I would look for another endo. If you are near a teaching hospital, try there. Most people seem to find their dose to remain stable. I know at least three people with no dose change in over twenty years. I think I would want to know what might be going on to cause this variation. I have read articles suggesting Radiation after TT to be sure there is no thyroid left.

In any case, go slow raising Synthroid for now until you figure out what might be going on.

Edited Liz1967 (Sept. 30, 2017 11:10:23)

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#5 Oct. 5, 2017 02:04:02

emmtee
From: Phoenix, AZ
Registered: 2011-10-26
Posts: 112
Profile  

Stored thyroid tissue after TT?

The last time I saw my endo, she checked my neck even though I've had a thyroidectomy. She told me she will continue to do this because it's possible for some thyroid tissue to grow back, and it's more likely to occur in patients who were hyperthyroid.

I've never heard of anyone storing thyroid hormone. After my surgery, I was told I would use all the thyroid hormone in my system within a couple of weeks. Then again, I know they have blood tests for “Total T4,” not just the “Free T4,” so what about the T4 that isn't Free? That must be stored somewhere. Maybe that's what your doctor is talking about.

After my thyroidectomy, I was prescribed 175 mcg of levothyroxine. At 6 months post TT I was hyper, so it was effectively reduced to 150 mcg (I actually took 175, but only 6 days a week - same total mcg as 150 x 7). That brought my T4 and T3 into the normal range, but my TSH was still suppressed (as it had been for most of the time I was on methimazole before my TT). My endo wants to try to get my TSH into the normal range, so my dosage was reduced to 137. That didn't have much of an effect, so she reduced it to 125 when I last saw her in April. I see her again in a few weeks. I have no idea what my blood test results are going to be. Some days I feel a little hypo.

BTW - My dose has gone from 175 to 125 mcg and I'm significantly overweight. There's no way I believe that 200 mcg is “average.”

Edited emmtee (Oct. 5, 2017 02:17:17)

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#6 Oct. 5, 2017 09:53:19

SueAndHerZoo
From: New England
Registered: 2013-03-27
Posts: 426
Profile  

Stored thyroid tissue after TT?

Wow, that's really interesting about it “possibly growing back”… didn't know that. But it's obviously not my problem because my TSH is too high, not too low. Unless I grew one back after surgery and then my body killed it off.

I need to let go and give up on trying to figure out the how's and why's . . . my levels are just all over the place and I may never know the reasons. But wish me luck with that because I've never been one to just “accept”… I research and study and hypothesize to a fault.
Sue


Goiter for 25 years, diagnosed with Graves in 2006, Methimazole with one 12-month remission, total thyroidectomy July 16, 2013.

“People don't always remember what you say or what you do, but they always remember the way you made them feel.”

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#7 Oct. 6, 2017 12:06:46

Ellen_B
Online Facilitator
Registered: 2009-05-21
Posts: 95
Profile  

Stored thyroid tissue after TT?

Hi all,
I agree it is a difficult task– finding out the how's and why's one levels are just all over the place. Could finding out where the T4 conversion takes place tell us something about the how’s and why’s? T3 is more active than the T4. I am not sure the gut is where the T4 is mainly converted to T3. It may be just one (and only some) of the places. I have read that T4 is converted to T3 as blood containing T4 passes through the liver, kidney, muscles and other organs. Almost all tissues contain deiodinase enzymes so T4 gets converted into T3 in almost all cells.

What does this information have anything to do with finding a reason– the cause of why one's thyroid hormone levels are fluctuating? Is it even important to know what the levels are of your T3? If it is which test can be done to find out.?

I admire your (Sue and Her Zoo's) style–looking for an answer by means of research, study and hypothesizing. I do not consider you attitude of “not accepting” a fault. It's the never give up attitude of yours and others that can lead possibly to an answer and to getting and feeling better. You set a find example for all of us to follow!


Ellen B GDF Online Facilitator

Edited Ellen_B (Oct. 6, 2017 12:12:31)

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#8 Oct. 6, 2017 21:54:40

SueAndHerZoo
From: New England
Registered: 2013-03-27
Posts: 426
Profile  

Stored thyroid tissue after TT?

Ellen_B
Hi all,
I agree it is a difficult task– finding out the how's and why's one levels are just all over the place. Could finding out where the T4 conversion takes place tell us something about the how’s and why’s? T3 is more active than the T4. I am not sure the gut is where the T4 is mainly converted to T3. It may be just one (and only some) of the places. I have read that T4 is converted to T3 as blood containing T4 passes through the liver, kidney, muscles and other organs. Almost all tissues contain deiodinase enzymes so T4 gets converted into T3 in almost all cells.

What does this information have anything to do with finding a reason– the cause of why one's thyroid hormone levels are fluctuating? Is it even important to know what the levels are of your T3? If it is which test can be done to find out.?

I admire your (Sue and Her Zoo's) style–looking for an answer by means of research, study and hypothesizing. I do not consider you attitude of “not accepting” a fault. It's the never give up attitude of yours and others that can lead possibly to an answer and to getting and feeling better. You set a find example for all of us to follow!

Thanks for your kinds words, Ellen. As much as I sometimes wish I wasn't so consumed with getting the answers to some of my “medical mysteries”, I know I will never give up. Sometimes when I'm asking my Higher Powers why I have so many medical challenges and what lesson(s) I'm supposed to be learning from them, I get the feeling that perhaps it's so that I can share all I learn with others who suffer with similar challenges.

But I'm not going to let myself put life on hold while I'm searching for all the answers because I'd waste what's left of my life doing that…. I'm now determined to live life to its fullest in spite of how I feel physically because if I keep putting things off until I'm feeling great, that may never happen, so feeling “OK” has got to be good enough some days.
Sue


Goiter for 25 years, diagnosed with Graves in 2006, Methimazole with one 12-month remission, total thyroidectomy July 16, 2013.

“People don't always remember what you say or what you do, but they always remember the way you made them feel.”

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