Going from Graves to being hypothyroid without ... - Thyroid UK

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Going from Graves to being hypothyroid without RAI or thyroidectomy

ling profile image
ling

An excellent piece about the thyroid "spectrum" from Thyroid Patients Canada's, Tania Smith.

The Spectrum of Thyroid Autoimmunity

thyroidpatients.ca/2020/04/...

“In Graves’ disease, the spontaneous change from hyperthyroidism to hypothyroidism (without ablative intervention with radioactive iodine or overtreatment with anti-thyroid drugs) may occur in two ways:

“by the unexpected development of TBAb;”

“or because the process of thyroid damage reflected in chronic lymphocytic thyroiditis overcomes the stimulatory effects of TSAb and, eventually, TSH”

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Most of our doctors are trained to focus on diagnosing and normalizing our biochemistry. They put out fires and resolve current crises. They are not trained to understand the complexity of autoimmune etiology and its variable manifestations over time–over our lifetime.

YES!!

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The common mantra doctors are told, and are told to pass on to us, is that “your antibody status won’t make a difference to your treatment.”

YES!

I DEFINITELY REMEMBER MY DOCTOR TELLING ME THIS

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A too narrow autoimmune thyroid “diagnosis” can result in blindness to “prognosis” — the forecast of how a person’s disease could develop over their lifetime.

YES!

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Undiagnosed aspects of autoimmune thyroid disease can manifest in unexpected ways or shift even while our thyroid biochemistry is being well managed ...

Knowing the full spectrum can open our minds and help us connect the dots between our thyroid status and our overall health.

WORDS OF WISDOM INDEED

10 Replies
shaws profile image
shawsAdministrator

Thanks for posting.

Thank you for sharing this, ling. This really makes me appreciate that my functional doctor and endocrinologist asked me to have my TPO and TgAB antibodies tested even though I had already been diagnosed with Graves’ Disease. I thought it was slightly silly at the time but I have a better understanding now.

ling profile image
ling in reply to Bellazzurra

Do u have your TPO and TgAB results?

Bellazzurra profile image
Bellazzurra in reply to ling

Yes, I do:

Thyroglobulin Ab: 0.44 IU/mL (range 0.01-4.11 IU/mL) Thyroid Peroxidase Ab: 0.01 IU/mL (range <5.61 IU/mL)

ling profile image
ling in reply to Bellazzurra

That's good, all in range. Rules out Hashimoto's for now. It's worth testing antibodies on off to check thyroid status.

I've been testing TRAb at every blood test since first diagnosis as my TRAb was high for a long time despite being consistently on carbimazole. This testing has helped to decide if I should try for remission.

When I asked doctors what a high TRAb meant, I was told repeatedly that it meant trying for remission would fail, and that I should just have RAI.

What I also didn't know all this time, is that the TRAb test was only testing for TRAb stimulating antibodies and not both the stimulating and blocking antibodies.

As it turns out, this was very important as the thyroid moves on a spectrum and for people with thyroid disease, thyroid conditions can shift to another or shade into another condition's territory, hence we can experience a mix of hyper and hypo symptoms.

Its next to impossible where I am, to get TRAb blocking antibodies tested, but I believe, based on symptoms, I developed these about 2 3 years ago, when my TRAb stimulating antibodies started to come down aft 3+ years on carbimazole, and eventually went down to zero. I was stupidly celebrating and the doctors were saying great your Graves is under control. Unfortunately, most doctors do not know any better.

Ya, the Graves TRAb stimulating antibodies were under control but the blocking antibodies were I suspect, developing. Over about 2 3 years, I looked aged, my hair grew a lot whiter. I didn't connect the dots because I didn't understand that the thyroid moves on a spectrum. I thought, as per norm thinking, if I had Graves, I only had Graves. How misguided this was!

Sorry to be so long winded. Its a lot to absorb when u are so new in your journey. But I believe it's important to share this with you as it might possibly help u know what to look out for.

With best wishes.

Bellazzurra profile image
Bellazzurra in reply to ling

You’re not long winded at all - I’ve gained so much knowledge from you. You are possibly more knowledgeable on thyroid diseases than most endocrinologists! Certainly, more knowledgeable than the first endocrinologist I saw (before I switched to my current endo who is a lot better). At the time, I had terrible depression and thyroid rage and the endo told me that it was impossible to experience depression and rage with Graves’ Disease and that I should get checked for an “underlying issue”.

She maintained that depression could only be an issue with hypothyroidism. Yet, from my research, I knew that depression could also be a symptom of Graves’ Disease. Moreover, as you’ve shared, thyroid diseases occur on a spectrum! How can endocrinologists be so behind on the science? Sometimes, I get so frustrated that I’ve considered going to medical school. It’ll be a little later than most but better late than never. So many endocrinologists have never had thyroid diseases and there’s a lack of understanding and compassion there. At times, the standard of care is appalling.

I never went back to the first endocrinologist after the crazy episode I described earlier. Ironically, the reason my mood was so destabilised was that she failed to acknowledge that I was sensitive to carbimazole and needed far lower doses than she had prescribed. Hence, there was a point when I went from hyper - hypo - hyper in the space of two months. Interestingly enough, my functional medical doctor was diagnosed with Graves’ Disease which switched to Hashimoto’s and that’s what led her down her own functional medicine journey. Although you shouldn’t have to go through a condition to show compassion for those who are struggling with it, the difference is clear when I’m consulting with her.

Yes, I think it’s a good idea to check antibodies regularly. I’ll have to look into whether or not I can test for TRAb blocking antibodies. I usually get tested for both TSI (Thyroid Stimulating Immunoglobulin) and TSHR (Thyroid Stimulating Hormone Receptor) antibodies. Is it possible that TSI is the same as TSAb and TSHR is the same as TBAb?

It’s always such a pleasure to have discussions with you on this forum and you’re up there on the list of people I would like to have coffee with. I always learn something new and pertinent from you. So please, write on - I’m 100% here for it!

ling profile image
ling in reply to Bellazzurra

Thank you, u are too kind 😁

Yes, I found anxiety out of my control when I was under stress. It was like looking in at someone else, and thinking I cannot understand why I simply could not get a handle on the anxiety, and surmised that it could only be some kind of chemical reaction going on in my body. Luckily my GP at the time was a professor with many years clinical experience. He talked me through the issue and assessed that I had no need for anti depressants at the time, and that instead, I should work on managing my work stress. I was very glad never to have started on anti depressants when there was no real need for them as they can be very addictive with their own side effects.

It's important at the critical junctures to have a good physician on your side. Your functional doctor sounds a marvellous fit and godsend, since she is herself a thyroid disease patient! Like Tania Smith who wrote the above article on the spectrum of thyroid autoimmunity. She knows what she's talking about first hand.

Terminology.

I must say it's pretty confusing to me.

TSI and TSAb I don't think are the same thing but both are in the "stimulating" camp.

TSHR I believe is TRAb.

TSAb and TBAb are subsets of TRAb.

Bellazzurra profile image
Bellazzurra in reply to ling

🤗

I’m also so grateful that I took the advice of people on this group and turned down anti-depressants. Doctors insist that SSRIs aren’t addictive but I’ve heard that they can be difficult to stop once you get started on them.

She absolutely is a godsend. Having someone who understands the condition from personal experience makes all the difference. Yes, I agree that TSHR Ab is TRAb and that TSAb and TBAb are subsets of TRAb. However, the terminology is pretty confusing when it comes to TSI. The first article says that TSI is TSAb while the second paper makes a distinction between TSI and TSAb. Perhaps, I’ll ask my endo - she’s usually more interested in TSHR Ab than TSI.

medscape.com/answers/121865...

ncbi.nlm.nih.gov/pmc/articl...

ling profile image
ling in reply to Bellazzurra

Yes, these papers out there make for a confusing read. If u do find out, please let me know. Thanks!

How are things with you?

Bellazzurra profile image
Bellazzurra in reply to ling

I asked a chiropractor that I’ve been following online for a while and he said that TSI is pretty much the same thing as TSAb. Still, it would be more assuring to have it expressly stated in a scientific paper. I’ll let you know if I ever find out!

I’m doing very well, thank you. Hope you’re having a relaxing weekend ✨

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