Do the TPO antibodies ever change?: Is it... - Thyroid UK

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Do the TPO antibodies ever change?

KatyMac68 profile image
14 Replies

Is it something that can alter or change or it a straight forward yes/no your whole life

It was tested in 2021 with these results:

TPO Antibodies 9 U/ml; TPO reference interval: <34 U/mL = Negative

34 U/mL = Borderline

>34 U/mL = Positive

TPO antibody negative.

And everytime the gp has sent for a blood test they say look at 2021 results

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KatyMac68 profile image
KatyMac68
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14 Replies
greygoose profile image
greygoose

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.

helvella profile image
helvellaAdministratorThyroid UK

Unless you were born with positive TPOab, then yes, of course, they can change!

There is probably more of an argument that once positive, you know, so many argue there is no point in re-testing.

And also it is rational to consider some people have Thyroglobulin antibodies but not TPOab.

Also to realise that once the thyroid gland is pretty much destroyed, TPOab are very likely to drop substantially.

KatyMac68 profile image
KatyMac68

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)

greygoose profile image
greygoose in reply to KatyMac68

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:

healthunlocked.com/thyroidu...

HealthStarDust profile image
HealthStarDust

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.

Hope that helps.

KatyMac68 profile image
KatyMac68

And I got a result for a test I hadn't had before!

TSH receptor antibody level < 1.10 iu/L; Healthy individuals upper limit of normal : 1.22 IU/L

Thyroid disease upper limit of normal : 1.58 IU/L

HealthStarDust profile image
HealthStarDust in reply to KatyMac68

TSH receptor antibody level

What is that? I’ve never come across it before.

helvella profile image
helvellaAdministratorThyroid UK in reply to KatyMac68

TSH receptor antibody level

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.

A TSI test only detects the stimulating type.

HealthStarDust

HealthStarDust profile image
HealthStarDust in reply to helvella

Thank yous.

radd profile image
radd

KatyMac68,

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?

thyroiduk.org/testing/priva...

KatyMac68 profile image
KatyMac68 in reply to radd

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!

SlowDragon profile image
SlowDragonAdministrator

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

SlowDragon profile image
SlowDragonAdministrator

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

nice.org.uk/guidance/ng20/c...

Or buy a test online, about £20

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

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

nuclmed.gr/wp/wp-content/up...

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

restartmed.com/hashimotos-g...

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

Post discussing gluten

healthunlocked.com/thyroidu...

KatyMac68 profile image
KatyMac68

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

Was this the current coeliac blood test?

Anti-tissue transglutaminase level 0.4 U/mL [0.0 - 6.9]

Saving up for blood tests

Auto immune is a call, my brother has RA diagnosed from an initial stool sample (but they do things different in Sweden)

Ibs/me/cfs/fm/hm they all are ai

If I get pip the things on my list are more acupuncture, more blood trots, therapy & getting the dishwasher fixed!

I take spray vit d/k and I have good levels

I inject b12 and I have ridiculous levels - I think I have a storage problem with that tbh

I also take magnesium, zinc, methyl folate, ubiquinol, probiotic and twice weekly organic iron (when I remember to take them)

Last tested in Feb

Serum 25-Hydroxy vitamin D3 level 118.0 nmol/L; <25 nmol/L deficient

25-50 nmol/L may be inadequate in some

>50 nmol/L sufficient for most people

Please note updated reference interval as of

18th April 2023

Serum vitamin B12 level > 2000 pg/mL [197.0 - 771.0]; Above high reference limit

I promise I'll prioritise paying for tests as soon as I can but I can't yet

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