Good Morning all! I'm not here very often these days because largely thanks to the advice and support of the superstars here, my thyroid medication has been under control for a few years now. I hope this is a beacon of hope for those of you still battling through. I take my NHS t4 and I supplement it with T3 from Turkey or Greece, which I buy in person from a pharmacy. My dose is stable but I take more t3 in the winter because I'm outside a lot in the cold of the mountains, and I find it helps.
Scrolling through for the first time in a long time I noticed that Seaside Susie's comments were noticeable in their absence, after which I learned that she had sadly passed away last year. She helped me a great deal, and I'd like to extend my belated sympathies to her family and friends.
The reason for my visit here today is just out of interest really. My TSH has been suppressed since mid 2019, co-inciding with me starting t3. (Yes, my GP just loves that!!)
At this point, my TPO ab levels were at their highest recorded at 243 kIU/L. From this point on they began to fall and have now been in 'normal' range since mid 2021.
I'm curious to know what has caused the immune response to have gone away. Does suppressing the TSH take the thyroid gland out of the loop as it's not being stimulated? Does the suppression cause the thyroid tissue to wither? Has my immune system actually destroyed it all?
I don't and never had a goitre, never had a scan of the thyroid and I can't feel anything obvious where it should be. An endo once palpated it and showed me a slide of someone else's with half the tissue dead in there and said that's what mine was like. I guess that saved on an ultrasound 😂
Any thoughts welcomed.
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Laundretta
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I'm curious to know what has caused the immune response to have gone away.
It hasn't gone away. Antibodies fluctuate all the time, but even if they disappeared altogether you would still have Hashi's because the antibodies are not the cause of the disease. They are the result of it.
Does suppressing the TSH take the thyroid gland out of the loop as it's not being stimulated?
That is one theory, yes. But difficult to prove, and not every so-called specialist agrees on that one. And your thyroid was probably well out of the loop before your TSH got to suppressed. So, who really knows?
Does the suppression cause the thyroid tissue to wither?
I don't think so, no.
Has my immune system actually destroyed it all?
That is a possibility, yes. But you can't prove it without coming off your thyroid hormone replacement for a couple of months, to see if your thyroid rallies round and produces any hormone.
I was told my thyroid was dead/completely destroyed when I was 60. At 65, for reasons I won't go into here (see my profile) I stopped my THR for six months until I began to feel hypo - well, actually until I started putting on weight. And when tested, although my TSH was about 45, there was some T4 and T3 in my blood. So, my thyroid wasn't completely dead, after all. Just sleeping.
I don't and never had a goitre, never had a scan of the thyroid and I can't feel anything obvious where it should be.
So, you have Ord's, not Hashi's. Same thing but without the goitre.
If you have Ords, then you would be looking for TRAb's (TSH Receptor blocking Ab's), not TPOAb's (which denotes Hashi.)
These are different antibodies and many people have a mixture of both, they are just never tested for as our autoimmune diagnoses are neatly slotted into either Hashi or Graves. Hashi generally generates a goitre where as Ords blocks TSH from entering the receptors so unable to encourage more thyroid hormone, and the gland loses volume and shrinks. Both result in hypothyroidism.
Many people find their antibodies drop once optimally medicated as this reduces thyroid gland activity.
greygoose May I just jump in this. Once the antibodies are in normal range, does that mean we are no longer hashi? Daft question I’m sure. I guess I’m wondering if antibodies go up and down all the time, then how can they be relied upon on comfirming diagnosis of hashi?
They can't be relied on to prove we don't have it, but if the antibodies are positive then we definitely do have it.
Yes, they fluctuate all the time, but whatever the level we still have Autoimmune thyroid disease.
Which is why it's always said on here that you cannot discount Hashi's on the basis of one negative blood test. You should have at least three. And even after three negatives it's not certain because not every Hashi's person ever has over-range antibodies. So, if Hashi's is still suspected, and ultra-sound should be done.
However if we know we have Hashi's, we've had it for a long time, and then the antibodies keep coming back negative, it probably means there's no more thyroid left for the immune system to attack and destroy.
BUT if, one day in the future, they discover they can transplant thyroids, and did so on someone whose thyroid has been destroyed by Hashi's, it's pretty certain that the immune system will start attacking the new thyroid, just like it did the old one, because it never completely disappears.
I could go on and on on that subject but don't want to bore you.
Well, it's very kind of you to say so. But that's not everybody's opinion! lol
Well, it's not just a theory. Antibodies are at their highest just after an immune system attack, when they have cleaning up to do. Once the blood has been cleaned, they have nothing else to do so their numbers diminish. That's well known. So, there's no more attacking going on, there will be no more excessive numbers of antibodies.
it probably means there's no more thyroid left for the immune system to attack and destroy.
Where has the thyroid gone? 🫣 you shared this part isn’t a theory, or at least that’s what I took from it. Is this not just a theory that we somehow lose our thyroid or is this actually a medical fact?
It's a medical fact. But, no, I don't have any links that prove it.
The thyroid itself doesn't go anywhere. With Hashi's, the cells within the thyroid that make the hormone, are all destroyed, even if the thyroid itself doesn't shrink. But, with Ord's, the thyroid shrivels up to a tiny pea-like object, incapable of making any hormone. As seen on an ultrasound. That's what mine was like at the time of my diagnosis - I had my last 'hyper' swing at the age of 50, and I was diagnosed at age 54/55 when I was just coming down from that swing - TSH only 13. The technician that did the ultrasound said 'it's very small', with an air of saying 'too small to be causing any problems'. But I guess he didn't know about Ord's. But it was still there. And my endo said she could feel it. It just wasn't working very well. And has probably stopped working altogether, now, as I haven't had a 'hyper' swing since then.
So, we don't 'lose it' as such, it just becomes obsolete, so to speak.
There are many things governing the immunesytem. Even immunologists find it complicated. I have read in many other forums that people's TPO has gone down when they are on T3. HOWEVER, it is impossible to follow people over time in such forums so there is no way to tell if their TPO goes high again later. As with other autoimmune diseases, the immune system will not constantly be on attack. There will be ups and downs. It is also possible fir the immune system to attack whatever it attacks once and never again. It might have been temporary unbalanced by an illness. One can never know. Many people do spontaneously heal almost immediately or over time when the immune system attacks the thyroid. This is why there is such a wide scope for quackers within the hypothyroidism field. Many heal spontaneously which means every quacker can have a large hord of witnesses testifying that their diet/meditation/magic healed them for sure. I can only sincerely hope that you are healed. No one can know for sure.I would also like to tell you that there is no more T3 in Greece. They have stopped selling it completely. The pharmacies recieve no T3 at all. There is only T4 now. Which is useless. So I need to ask you hiw recently you were in Turkey and if you had success there. I have been relying on Greece and have 1 month's supply left. I'm severely hypothyroid without T3.
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