Antibodies fluctuate all the time. But, yours being so low probably aren't ever going to be over-range - i.e. positive.
That said, some Hashi's people never have over-range antibodies and are diagnosed by a thyroid ultrasound. So, I'm wondering why you're asking this question. Do you have reason to believe you do have Hashi's.
And, of course, they have only tested one of the Hashi's antibodies - which is typical of the NHS. There are also Tg antibodies, which would indicate Hashi's if positive, even if the TPOab are negative. But you'd probably have to get those tested privately.
So, all in all, you cannot 100% rule out Hashi's on the basis of one negative antibodies test, I'm afraid.
I guess I was wondering why the test kept being asked for (in case it changed)
Whereas the results keep coming back saying we already told you that, implying it was unchangeable
Mind you I'm not even sure I know what the antibodies are for 🙄🫣
The GP got herself in a loop, because I had thyroid tests on 11th June to check levels, then because I was unhappy at my level of levothyroxine at a face to face appt requested them again
They came back saying there wasn't enough blood to test so she resent them (Multiple requests for this patient received with insufficient samples to process separately. In order for us to complete all requests, these have been amalgamated. A copy of the results have been sent to all requestors)
So I have a tsh/t4 from 11th & 21st refusal from 19th
A Serum free triiodothyronine from 19th & 21st
A Serum creatine kinase from 19th & 21st
A Anti-tissue transglutaminase & a plasma glucose from just 19th
3 TPO refusals 11th, 19th & 21st
No additional levothyroxine (current dose 50) but a referral to an endocrinologist....and apparently ipswich hospital actually have a thyroid specialist (if I read the website correctly)
Mind you I'm not even sure I know what the antibodies are for
The same could be said for the whole of the NHS and the medical community at large! None of them really understand what antibodies are or what they do or what they signify.
TPO and Tg antibodies are tested to see if you have Autoimmune Thyroiditis - aka Hashi's. And that's probably as far as their understanding goes. But, if you have a positive result - i.e. levels over the top of the ranges - there is no point in retesting because antibodies fluctuate all the time, but even if they go back into range, you will still have Hashi's, that doesn't go away. So, he actual levels of antibodies, once you know they are positive, is irrelevant.
However, if they are negative, it doesn't prove that you don't have Hashi's, because they fluctuate. You should have at least three negative tests before you can even think about ruling it out. And that's what they don't understand. And, as I said above, even with three negative test results, you could still have Hashi's.
As to what they do, they clean up the blood - nothing sinister - as I explain here:
The only real thing to know about TPO and NHS is that when you have the antibodies it gives doctors more confidence in treating you when you have subclinical hypothyroidism, especially if trying to conceive or pregnant.
Yes, the levels fluctuate. Mine have been tested twice on the NHS (unusually as first test result was over range anyway) and it seems there is much more that needs to be researched about antibodies as when mine were off the scale over range, this coinciding with increased FT4 and FT3 levels when I had actually reduced dose and swapped to liquid levothyroxine.
We often see on the forum that the TPO confirms Hashimoto. However, the antibodies are present in both autoimmune hyperthyroidism as well as hypothyroidism. So, your other levels are more indicative of whether it’s hypothyroidism or hyperthyroidism that you are dealing with. The important point here is the antibodies are not exclusive to hypothyroidism and in some people who are initially diagnosed as hypothyroidism will later develop hypothyroidism and vice versa.
As I shared, a lot more research needs to be done on antibodies.
This is also called TRab. This is a test for antibodies that directly affect the TSH receptor.
There are three sorts - stimulating, blocking and (more or less) neutral.
The stimulating type, which are also calls Thyroid Stimulating Immunogobulin (TSI), are what causes the thyroid to over-produce and release thyroid hormone in Graves' Disease. Resulting in hyperthyroidism.
Immunogobulin another name for an antibody. Effectively, it is the name a biochemist might use - whereas antibody is more associated with immunology.
Blocking and neutral are almost never considered. However, a TRab test detects all three types. Most often, it is used to confirm a diagnosis of Graves' Disease when there is already hyperthyroidism so the distinction isn't that important.
Yes, TPOAb are extremely variable and dependant upon the extent of the autoimmune attack. They also encourage other inflammatory cytokines (chemical messengers) that result in chronic inflammation that can impair our thyroid hormones from working well.
If NHS won't retest, why don't you have them retested privately?
No money atm, radd , I'm working less so barely keep our heads above water on my husbands pension. I mean we can pay the bills and eat but there is no spare, I'd started to save up, then the car service came in at over 700 a couple of weeks ago so back to the beginning.
I'll get there, applied for pip (who knows if I'll get it) & I'm getting access to work which is starting to help me be more effective at work
I'd give up self employment and get an employed job, but I'm pretty poorly atm so that's a non starter
But I recently started baby sitting and that's good money but not frequent!! Onwards and upwards!
Looking at your profile you have EDS (hyper mobile) so yes this is likely autoimmune thyroid
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
As your TPO antibodies are negative NHS won’t test TG antibodies. You will have to test privately
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
When were vitamins last tested
Exactly what vitamin supplements are you taking
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Many (most?) EDS members on here with Hashimoto’s find significant benefit from strictly gluten free diet
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Thanks SlowDragon I've had 2 or 3 colonoscopies which showed I wasn't coeliac; I have also twice gone Gluten free for 4 then 6 months (I think in the 90s - not immediately before the colonoscopys, as at least one of those was in the 00s)
I'd be scared to go Gluten free right now as I eat very little variety root veg, meat and bread
I am intolerant to dairy, egg, coconut, almond and soya - my guts are a disaster zone with pulses and green veg being expelled before digestion
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