Hashimoto's testing information

[Sneedle]

Hello,

Could someone provide me with links to posts or information on Hashimoto's testing, and how a diagnosis is arrived at?

As I understand the antibodies test is not conclusive?

Thanks 😊

[Jaydee1507 Administrator]

There are 2 types of antibodis to test - TPO (NHS& private) and Tg privately. If they are negative each time you test them then you can have a thyroid ultrasound which would show typical changes of autoimmune thyroid disease.

I believe its around 5-10% of Hashi patients are seronegative.

[Regenallotment Ambassador]

Hi

Someone will correct me if I am wrong about this but the way I understand it is…

If you have identifiable TPO or TgAb over range you can be certain you have Hashimoto’s. However you can have a negative result and still have Hashimoto’s identified by an ultrasound scan.

I have high TPO but the ultrasound showed a small thyroid so still autoimmune but probably the Ord’s form.

🌱

[tattybogle]

if both TPOab and TG are within normal range, then an ultrasound of the thyroid can show the characteristic damage from Autoimmune Thyroid Disease AITD ~as long as enough damage has already occurred for it to be visible ..

autoimmune damage to the thyroid happens very slowly .. and even very high antibody levels do tend to reduce over the years .

So you may get 1 person with lowish antibodies who's had AITD for decades (who may have originally had high antibodies but no one tested ) , and who now has damage that is visible. .. so you can diagnose them from the ultrasound (or biopsy for research purposes .. this is how they found it is possible to have AITD and negative antibodies )

and you may get another person with negative antibodies who only recently developed autoimmune thyroid disease, in which case it is more or less impossible to prove the cause of their hypothyroidism is autoimmune ..... you'd have to wait till their thyroid was damaged enough to see the damage on ultra sound in order to prove their hypothyroidism was caused by autoimmunity.

[jade_s in reply to tattybogle]

Hi tatty. Does taking thyroid meds, levo or t3, stop the damage in someone in that last scenario? I ask for myself.

Antibodies always below range. I had an ultrasound but couldn't really interpret the comments and they didn't say normal or abnormal, just measurements ( which i couldn't figure out myself either, looking at the literature). Think i posted it here once & can't remember the replies now, doh.

Still hypo but don't know why. I don't think about it anymore but this question made me curious again.

[jade_s in reply to jade_s]

Huh, turns out i never posted my ultrasound here. Maybe i should if that's not frowned on! tattybogle

[tattybogle in reply to jade_s]

do it .. i think a couple of people on here can translate the technical gobbledegook for you ........not me though lol

[jade_s in reply to tattybogle]

Awesome thanks! lol it's very niche stuff

[tattybogle in reply to jade_s]

i cant see how replacing thyroid hormone would stop the immune system damaging the thyroid , so i'm saying no ..

[Sneedle in reply to tattybogle]

Hello Tattybogle, Regenallotment and Jaydee1507 ,

Thanks for your answers.

So how do you start to try to rule out Hashi's?

My results above are low in range and I thought that meant I couldn't have it, but it seems I could have it ie. anyone with in range results could have it in theory? If you always have 0 as a result, does this rule it out completely?

you'd have to wait till their thyroid was damaged enough to see the damage on ultra sound in order to prove their hypothyroidism was caused by autoimmunity.

What would be a catalyst for this happen?

I'm losing the thread here a bit!

Ok, my question is- is there a difference in treatment or any kind of implication at all, between having Hashi's and hypothyroidism from a different cause?

I appreciate your taking the time to answer.

[tattybogle in reply to Sneedle]

so even if antibodies are always normal, it's never possible to totally rule out 'early' autoimmune disease. (when it has not done enough damage to be evident on a scan ) because we know a few people with hypothyroidism were found to have typical autoimmune damage (by scan , confirmed by biopsy)in research, and yet they had no history of raised antibodies .

..... so longstanding autoimmune thyroid disease would presumably be evident on a scan even (if antibodies had never been found to be raised).

i have no idea of the timescales involved for 'early' / 'longstanding'

'Time ' is the key ... over time the immune system cases more damage... eventually it would be possible to see this damage on a scan (it is lymphocytes in the immune system that do the damage . not the antibodies themselves, they are just a clue that it has happened) ... i have no idea how long 'eventually' is... it depends on how fast/ how often the immune system is attacking the thyroid .

From NHS point of view , there is no difference in their treatment of autoimmune hypothyroidism or hypothyroidism from any other cause ..

with the exception that if it they know for sure it is autoimmune , they will expect it to be a life long condition.

and as they have no treatment for the autoimmune aspect of it (the part that is causing the ongoing damage) , they don't expect the thyroid to get any better.

So once thyroid hormone levels are low enough to need treatment with autoimmune hpyo, then lifelong thyroid hormone replacement is expected to be needed. .... whereas hypothyroidism from some other causes ( eg de quervains / post partum thyroiditis/ etc) can be temporary and will often get better, meaning levo isn't necessarily needed for life ... but they can't be sure if post partum thyroiditis /etc are going to be temporary/ permanent ,so they just have to wait and see if it gets better.. if antibodies are raised in post partum , then it is 'more likely' to be permanent , but that's not a definite either .

other implications ... autoimmune thyroid disease has the potential to cause random periods of high thyroid levels (when the thyroid tissue is attacked , it can sometimes dump a load of ready made T4/T3 into the blood, causing temporary 'hyperthyroid like' blood tests and symptoms.. but not as severe as true hyperthyroidism ) . so some autoimmune hypothyroid patients can have weird things going on with bloods/ symptoms , and can be harder to keep onto a stable dose .

other implications ...... some say that that AIP (Autoimmune Protocol) diets / lifestyle changes which can improve the autoimmunity aspect and calm it down so it does less damage to the thyroid in future (but it wont fix any damage that has already happened ..so you'd still need thyroid hormone replacement anyway).. but there are probably other benefits to the rest of the body~ lower inflammation etc ~so it's not waste of time trying to improve things using AIP etc...... but NHS won't be interested in any of that ...as far as they are concerned they have no treatments for autoimmune thyroid disease, all they can do is replace the resulting low hormone levels.

Gosh that got a bit waffly ... sorry for the long read round the houses

[Sneedle in reply to tattybogle]

No no that was fantastic thank you! Great outpouring of knowledge 👏 helps a lot😃

[Regenallotment Ambassador]

Do you or other family members have other autoimmune conditions? We have a few with psoriasis, colitis, one just developed what looks like vitiligo to me. One with Reynauds, Aunty had a goitre removed etc. increases the likelihood for you of AI.

[Sneedle in reply to Regenallotment]

No there isn't, as far as I know, any autoimmune illness - we seem to be more allergic to all sorts across the family, and have asthma.

[Sneedle]

My Gran had her thyroid removed although I don't know why.