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#1 June 3, 2021 16:57:46

SueAndHerZoo
From: New England
Registered: 2013-03-27
Posts: 439
Profile  

What do you think of this theory?

Been a looooooong time since I posted…. so grateful Kimberly is still here keeping this board alive! Quick overview: diagnosed with Graves in 2012, had a TT in 2013, and have been riding the TSH rollercoaster ever since. My levels keep changing and I am apparently very sensitive to Synthroid/Levo because even the tiniest dose change swings my levels in the the opposite direction. I've been riding the waves and changing doses pretty much every 6 months and finally went to a new endo to see if he could tell me why this keeps happening. He had two things to say:

I am one of the 5% of patients who are SUPER SENSITIVE (his words) to Synthroid and advised that I keep making the dose changes in very small increments.

His second theory was that because I am gluten intolerant (I can eat it occasionally with no issues but if I have too much too often, it causes gastrointestinal distress (which is not great since I already have colitis). He thinks that if I completely stopped eating gluten and kept my gut in a healthy state that the TSH fluctuations would stop. I didn't think to ask this until after I left his office, but I'm guessing he means that I absorb the Synthroid differently depending on the state of my gut?

Does that sound like a feasible explanation / solution to anyone here? And if so, when would I absorb more of the Synthroid: when my gut is torn up or when it's healthy?

I've pretty much accepted that I'm going to be on this rollercoaster forever but if there is a chance that never eating gluten again would stop this madness, I might try. 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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#2 June 4, 2021 04:03:13

Liz1967
Registered: 2014-02-25
Posts: 305
Profile  

What do you think of this theory?

This makes sense. Mast cells, which secrete histamine, affect T3 and gluten intolerance also has a histamine connection. It could be the histamine levels and activation of mast cells that cause your problem. It could also be an absorption issue. Also there is a seasonal variation in TSH levels most people are unaware of, trends higher in winter and lower in summer, which might cause a seasonal, maybe unnecessary, shift in your dose - unnecessary because people with normal thyroids see this same seasonal variation. Certainly worth a trial of total gluten elimination.

Edited Liz1967 (June 4, 2021 06:23:13)

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#3 June 4, 2021 09:08:30

SueAndHerZoo
From: New England
Registered: 2013-03-27
Posts: 439
Profile  

What do you think of this theory?

Wow - thank you for that info. I really know very little about mast cells and histamine but it's definitely something I should learn more about as apparently it affects my TSH and my colitis. I also had no idea there were seasonal fluctuations with thyroid levels - very interesting!

That information will definitely be helpful the next time I see my levels are only a little off and I'm not really experiencing any symptoms, at that point perhaps I'll wait to stay at the same dose with the expectation that it will regulate as the year goes on. So now to be MUCH more careful with gluten and see how it goes. Thanks again for the reply!
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 June 4, 2021 16:59:59

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4245
Profile  

What do you think of this theory?

Great to see you!

I've not seen research on gluten intolerance and absorption, but there *have* been studies on celiac and poor absorption of levothyroxine:

http://www.thyroid.org/wp-content/uploads/2012/07/clinthy_v243_4_5.pdf

https://www.thyroid.org/patient-thyroid-information/ct-for-patients/vol-5-issue-6/vol-5-issue-6-p-3-4/#:~:text=In%20many%20patients%20with%20celiac,a%20diagnosis%20of%20celiac%20disease.

One question you might ask your doctor is if there is any concern that you have celiac. If so, your doc might want you to wait on going gluten free until after you've gone through testing (as that can affect the results).

Take care!



Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#5 June 6, 2021 08:48:09

SueAndHerZoo
From: New England
Registered: 2013-03-27
Posts: 439
Profile  

What do you think of this theory?

Thanks for the links, Kimberly….. I'll go check them out right now. Actually I don't have celiac disease, I am only “gluten intolerant”. I've been tested for all types of sensitivities and I'm not severely intolerant to gluten - it just becomes a problem if I ingest a lot of it over a short period of time.

My colitis has been in remission for 9 months (meaning I'm off all colitis meds at the moment) and as long as I behave with my foods, the colitis is manageable. And since I seem to be “hyper” more than “hypo” it seems, if anything, I'm absorbing my Synthroid TOO well. (shrug)

Lucky me for being “super sensitive” to everything that goes into my body, as well as super sensitive to every tiny side effect and symptom. I so appreciate being able to come here to get valuable information and helpful resources….. thanks to everyone for being here.
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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#6 June 6, 2021 10:10:46

giannam
Registered: 2021-06-03
Posts: 1
Profile  

What do you think of this theory?

Hi Sue, and hello everyone!

This is my first ever post and I'm happy to be here! I was diagnosed with Grave's a couple years ago and received the radioactive iodine treatment so now I am hypo and currently taking Synthroid.

This post was very fascinating to me; thank you Sue for sharing! I also deal with sensitivity to dosage and frequent gastro issues. I tried a gluten free diet for a couple weeks and felt a little bit better but did not notice any drastic improvements or changes with my thyroid levels or overall. It is definitely worth researching as it is an interesting topic.

Thank you Kimberly for the resources as well! It's comforting to know there are others that go through the same issues throughout all of this!

-Gianna

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#7 June 10, 2021 18:39:07

Meredith2021
Registered: 2020-11-08
Posts: 5
Profile  

What do you think of this theory?

Gianna—
Hi, I'm trying to decide on treatment for Graves.
Can you tell me— how was your radioactive iodine treatment?
What side effects if any did you have? How did you tolerate it? How long did you take it for?

Why did you decide on RAI instead of anti thyroid drug, like Methimazole?
And did your doctor discuss taking ATD before RAI as -pretreatment, which some experts recommend, apparently?

I keep reading that RAI is more successful at remission and with less side effects. Yet, a couple of doctors told me they use mostly ATD. I don't know if this is a trend or what. I may look for a new specialist.
Any feedback from you on your experience is appreciated.

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#8 June 11, 2021 15:52:54

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4245
Profile  

What do you think of this theory?

Hello and welcome!

First, do you mind if we work with you to update your screen name to avoid confusion with our admin, Ellen_B?

Hopefully, you will get some personal experiences here. You might also join our closed Facebook group, as that is a lot more active these days.

I suspect that what you've read is that RAI is successful in dealing with the hyperthyroidism, as opposed to bringing about remission from Graves'. The goal these days with RAI is to completely knock out all thyroid hormone production, so you *aren't* likely to have a recurrence of hyperthyroidism. All three treatment options have risks and benefits.

If you are considering antithyroid medications, you might be interested in this recent webinar that the GDATF hosted: https://www.youtube.com/watch?v=WJjSzjFyNU4&t=945s

Take care!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#9 June 17, 2021 12:32:48

Meredith2021
Registered: 2020-11-08
Posts: 5
Profile  

What do you think of this theory?

Hi Kimberly—thanks for your reply June 11. Per your advice I’ll update my screen name, ellenb. Do I just log out, and then re-register, or what?

Re treatment– you wrote:
‘I suspect that what you've read is that RAI is successful in dealing with the hyperthyroidism, as opposed to bringing about remission from Graves'.

Could you clarify that? I’ve read that RAI does in fact cause remission from both H. Thyroid and Graves’.

And I have a question on GDATF’s interesting February webinar that you mentioned— ‘The Long Term Use of Antithyroid Medication’.

Two experts spoke on the advantages of anti-thyroid drugs as the best treatment—including Dr. David S. Cooper – professor Johns Hopkins, past President ATA, editor of endocrinology journals, etc.

They showed statistics that ATD was better than RAI, but also they showed that it led to actual remission in only 50% of cases. And said many patients prefer ATD, so doctors go along with patients’ preferences, if possible.

But the surprise was that towards the end of the webinar on ATD, Dr. Cooper said he himself took radioactive iodine (RAI) for his own Graves Disease. Said he’s doing fine, and he said so do most people who take it!

What did you think about that? I don’t get why Dr. Cooper would give a lecture promoting ATD, then tell us he used the other treatment, RAI, for his own Graves Disease.

GDAFT recently had an article explaining RAI advantages, written some years ago:
“Treating Graves' with radioactive iodine– Treatment of Graves’ Disease by the “Atomic Cocktail” by Malcolm R. Powell, M.D

So why do patients or doctors choose ATD (Methimazole) with frequent relapse rates? And mainly, the side effects can be so much worse.

Also, some doctors say to use ATD as pretreatment for RAI. But, an article in Medscape Medical News said:
Radioactive Iodine Can Be First-Line for Hyperthyroidism (in the UK)

Thank you for any feedback. It's a confusing matter.

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#10 June 17, 2021 13:57:40

Liz1967
Registered: 2014-02-25
Posts: 305
Profile  

What do you think of this theory?

https://pubmed.ncbi.nlm.nih.gov/31482765/

2019 study, another perspective on ATD treatment. Note especially the “conclusion” section.

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