What is the purpose of re-testing Thyroid antibody levels ??

[pgdw]

Hi does anyone happen to know or have been advised on the following: once one has established one has raised TPO & Tg antibodies ( like me, I am Hashi too) do you need to then test TPO/Tg periodically thereafter? And if you do, are the raised or falling or fluctuating antibody levels indicative of anything with regards to the current state of the condition? i.e getting better, worse etc...? What is the benefit of retesting Thyroid antibodies?

[greygoose]

Once you have established that you have Hashi's, there is no point. The level of the antibodies has absolutely no bearing on the state of the condition. They fluctuate frequently, and are not responsible for the damage done to the thyroid, anyway.

[pgdw in reply to greygoose]

Thank you very much for this! So in terms of re-testing, what should be on my periodic re-test list: TSH, T4, T3, D, B12, Ferritin...??

[greygoose in reply to pgdw]

and folate.

[Chippysue]

It is a very good question and I strongly disagree with greygoose. My thyroid antibodies were off the scale and with diet and toxin free lifestyle my thyroid antibodies were down at 60 over a year ago when I last had them tested. Conventional doctors have not been taught about antibodies and autoimmune diseases. We can reduce the chances of having other autoimmune diseases by lessening the amount of endocrine disrupters and mimickers. When you reduce the amount of antibodies then you reduce the chances as the multiple antibodies are not aimlessly attacking. So, yes I would always have your thyroid antibodies tested and if you want to work at reducing them there is information available. I know of around 7 people who do not take thyroid medication but were diagnosed with hashimoto's as they have reduced their antibodies and their diet and lifestyle.

[pgdw in reply to Chippysue]

There is a big debate about the validity of your comments, which where I was sort of getting at with my question. I saw a leading endo professor specialising in Thyroid and he told me the same as GreyGoose. He said if there was something out there that existed to support what you are saying, he would be the first to tell me about it. He told me to lose weight and that apparently one could only blame hypothyroidism for (2-5 kg weight gain) :(( Anything over this is due to lifestyle ! While there may be an emerging strong case for the indirect role of food intolerance in all of this, he did not seems to acknowledge it as relevant and let alone a deal breaker... I asked what impact issues with the gut have on the endocrine system but I was not graced with an answer, just referred to a gastroenterologist who said this is only relevant if you have conditions as Graves etc.. The fact for me is that a personally feel much better without carbs (weight loss apart) and other foods that very obviously and very immediately upset my stomach or the way I feel in general (especially carbs). I have been tested + colonoscopy + endoscopy + biopsies for gut issues that can only be diagnosed via lab test etc. Have B12 antibodies but levels OK for the moment...

[Chippysue in reply to pgdw]

sorry, am I being slow? a big debate about the validity of my comments - please explain.

I have seen 4 Endocrinologists, 2 of which were Professors and I have found from my own research that Endocrinologists do not know everything about the thyroid and autoimmune disease.

If you are happy with what an Endocrinologist says to you then that is fine but the experts in autoimmune diseases and antibodies say differently.

Autoimmune diseases are on the rise at an alarming rate which some experts have learnt of the reasons.

[pgdw in reply to Chippysue]

Sorry I think I am coming across the wrong way. By the idea of validity I mean the wider debate and confusion over what to test or not to test. The role of "endocrine disrupters and mimickers" etc Are they or aren't they? Are antibody levels really indicative of improvement of your condition etc etc.... As you say "experts in autoimmune diseases and antibodies say differently. So why the gap between endos and autoimmune experts etc etc... By me mentioning that I saw supposedly one of the best, one would have hoped that this newly emerging findings would have come across his path (just because he may have not seen them or indeed chosen to disregard them etc, it does not make these claims or findings less valid!) . Since you have seen a few, what was the outcome for you ? Did any of them acknowledge in any way any of the points you are highlighting or indeed the questions I am raising in my message etc... Does this make batter sense...?

[Chippysue in reply to pgdw]

I have heard many times that it takes around 15 years for new scientific findings to reach conventional doctors.

To learn more I would look at Dr Zach Bush an Endocrinologist and Dr Tom O’Bryan - his books are excellent - the autoimmune fix being one of them. Then dr Izabella Wentz website, books and documentary series, dr Amy Myers, the autoimmune solution and other books. There is so much that can be done. Dr Rangan Chatterjee in the UK is o’fay with it all too, especially microbiome significance.

[greygoose in reply to Chippysue]

TPO and Tg antibodies don't attack anything. They just clean up the traces of TPO and Tg that leak into the blood during an immune system attack on the thyroid. They certainly do not increase your chances of developing another autoimmune disease. All antibodies are very specific in what they do. They don't just randomly roam around the blood vessels looking for something to attack, like a band of sanguine bovver boys. They just do their job and go away.

[Read58 in reply to greygoose]

I too have puzzled over antibodies and their significance after initial diagnosis of Hashi’s. Mine have been tested three times so far ( twice NHS, once medicheck. On the last check they had completely gone down, virtually nonexistent. Not gluten/dairy free. My thyroid results too were okay, so i assumed that was because antibodies had gone.

[greygoose in reply to Read58]

There is no direct association between TPO/Tg antibodies and thyroid results. They don't link in any way. These particular antibodies react to traces of TPO or Tg in the blood. Nothing to do with your hormone levels.

[Read58 in reply to greygoose]

Sorry if this sounds stupid greygoose, but do you know what reasons would result in them resolving? . Chippysue mentions above, of people coming off meds when antibodies have dropped, would love to be able to do that! Hate how Levo makes me feel.

[greygoose in reply to Read58]

Nothing that I know of. Given that antibodies fluctuate and are unpredictable, and reduce as the thyroid reduces in size, and with age, how can you possible prove that any one thing has caused them to go away? They could just as easily come back again. Maybe not tomorrow, but at some point between now and the end of our days.

And TPO/Tg antibodies, even if they disappeared completely, would not in themselves allow us to come off our 'meds'. Having high antibodies does not force you to take thyroid hormone replacement, so why would you be able to come off them if they went away?

This is based on the misconception that it is the TPO/Tg antibodies that attack the thyroid. They don't. It is lymphocytes produced by the immune system that do the attacking and destroy the thyroid. I have never seen any proof that convinces me that these can be got rid of, and even if they could, it would depend how much damage has already been done to the thyroid, whether or not you could come off your hormone replacement. There are far too many variables to be able to say anything with any certainty.

Hashi's is a disease that can go into remission, for whatever reason, sometimes for years. And, that's when people start talking about having 'cured' their Hashi's, by whatever means. But, sooner or later, it comes back. On another forum, there was a girl who swore she had 'cured' her Hashi's with iodine (!) and had been off her 'meds' for months. She was urging every one to start taking iodine. It wasn't long after that that she posted again with her labs, and said she was taking x amount of T3. So, that was hardly a 'cure', was it, just a period of remission. Sorry.

[Read58 in reply to greygoose]

Thank you for reply greygoose. As much as i’d love to stop taking the vile pill, i now it would be a very silly move to make. Thanks for explaining, really appreciate it.

[greygoose in reply to Read58]

You're welcome.

[greygoose in reply to greygoose]

Just out of interest, why is it a 'vile pill'?

[Read58 in reply to greygoose]

Although my TSH was in the high 20’s when i was diagnosed, i actually didn’t feel unwell, went to docs with low HR and requested thyroid bloods myself as read could cause low HR. Since starting levo i have felt ill, fatigued, depressed and absolutely no inclination to enjoy life. Hence the vile pill

[greygoose in reply to Read58]

I see. Well, there could be all sorts of explanations for all that - or none at all! But, would need more details. Why not start your own thread so that we can leave pgdw in peace?

My apologies, pgdw, for squatting your thread.

[pgdw in reply to greygoose]

No need to apologise! It has been most informative and most of all objective. I have read it all with utmost interest. It has been very refreshing to hear some logical explanations and put things in perpective, as It is very easy and tempting to jump up on a bandwagon that promises to change things for the better without looking into the fuller picture. I guess it is a fact that hormone study is still in its infancy in comparioson with other areas of medicine. It is complex and not always possible to simplify/boil down to what we think we want to hear. I am badly trying to do just this and reman objective but wish there is someone out there to try and answer these questions when we attend appointments or get bogged down in it all. It is important for patients to hear this and I only wish endos have more time and desire to explain and spell it out. For me the "vile pill " brought my life back to what it was. I feel normal again but it took more than one year to adjust the dose etc... Just really regret the years I had to suffer needlesly... The system should be more helpful and transparent.

[greygoose in reply to pgdw]

The system would have to start with better education for doctors on hormones. The most important life force and they only do one afternoon in 7 years on the whole endocrine system! That's a lot of hormones. So, you can imagine how little attention the thyroid gets. It's not just lack of time that stops endos explaining things, it's also lack of knowledge.

[pgdw in reply to greygoose]

At least one of the GPs I when to see a few months ago, had the common diecency to tell me that she actually knew nothing about Thyroid or anribodies and dully agreed to do all the blood tests (the private endo ordered) on the NHS...

[greygoose in reply to pgdw]

Well, that was good of her.

[helvella Administrator in reply to pgdw]

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