Do I have Hashimotos? I consistently have high levels of anti TPO antibodies in my annual bloods. Around the 500 mark. TSH and T4 normal.

[Fee52]

Decades of bother with idiopathic ulteceria. Can go for a while then come back. I've had these high levels of anti tpo antibodies highlighted in my bloods since 2018. Other levels within normal range. My own research shows me links between ulteceria and hashimotos. I would like to know if I definetly have Hashimotis. GP thinks all of the above is nonsense and the high levels of antibodies are irrelevant.

[SlowDragon Administrator]

welcome to the forum

Yes, high antibodies confirms autoimmune thyroid disease

UK medics very rarely call it Hashimoto’s

Please add most recent results

Do you have symptoms

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Are you currently taking any vitamin supplements

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

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

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

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

[Fee52 in reply to SlowDragon]

Thanks so much for your reply. These are my results. These are the only thyroid tests I had. The gp said he was angry i was pushing to have the antibody test again. He said they know I'm positive for antibodies so there is no point retesting. He said all the antibody result means is i may develop problems in the future. These antibodies have been on my results for several years. Why does no one actually give this a name? The only symptom i have is the ongoing idiopathic ulteceria which is driving me to figure out what is going on. The gp dismisses this too. He has prescribed iron tablets as my ferritin was low at 12. Should I be on medication? Thank you.

Results

[SlowDragon Administrator in reply to Fee52]

NHS won’t retest thyroid antibodies

Suggest you get FULL thyroid and vitamin testing at least annually

Come back with new post once you get results

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

1.1 Recognition of coeliac disease

1.1.1 Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

[SlowDragon Administrator]

Do you have gut issues

Ever had coeliac blood test

Urticaria and Hashimoto’s

thyroidpharmacist.com/artic...

[Jaydee1507 Administrator]

So the positive antibody test confirms Hashimoto's, no need to repeat the test as your levels will fluctuate quite naturally over time.

The way to monitor your thyroid is to run bloods for thyroid hormone levels. Many NHS areas only test TSH, some will also do FT4, almost none will test FT3 the active thyroid hormone. This is why many members here buy private tests to be able to properly assess their thyroid function.

You haven't included the ranges for each test in the image you posted. We do need to know what these are as ranges vary from lab to lab.

I'd recommend getting your thyroid tested every 3-4 months to keep an eye on things. Book your blood test for 9am when TSH is at its highest, it runs on a circadian rhythm. Only drink water and don't eat anything before the test that day. This gives consistency in results. If you are taking any supplement that contains Biotin then stop that 3-5 days before the test as it may interfere with the results.

What time of day was the test done where you have posted the results?

It would seem that you are in the earlier stages of Hashimoto's and doctors will not begin treatment until you have 2 TSH results above range, 3 months apart.

To help things at this stage you can try a gluten free diet, also some Hashi people benefit from a dairy free diet.

You can also test and supplement vitamin levels - ferritin, folate, B12 & D3. Your GP might be kind and test these levels for you, post the results here for comments. Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Keep a spreadsheet with your results to make easy comparisons.

[Fee52 in reply to Jaydee1507]

Thanks for your reply. The main thing which is confusing me is my gp has not given this a name. No one has called this hashimotos or auto immune thyriod disease. I've just been told everything is fine, it just means you may develop thyriod disease in the future. Is this just wrong? I plan to challenge again. I've been showing these antibody results since 2018.In these most recent results, my T4 was 15.7 with a range of 11-21.2, my TSH was 2.51 with a range of 0.27-4.2 & my thyriod antibodies were 546 with a range of u35.

Tests were done at 5pm. Thank you.

[Hidden in reply to Fee52]

To be fair, most GPs are pretty useless. I had symptoms for years and they told everything looks fine, they never tested my thyroid and even had the guts to tell me everything is in my head.I eventually educated myself, even did a Masters in Human Nutrition and Metabolic Disorders, and with access to increasingly more research I decided to test my thyroid, a full panel, privately, outside the UK. My TPO were above 1000 and when I showed my UK GP they retested me, got the same results and then said it is autoimmune thyroiditis...

It will depend on the knowledge of the GP and how much they keep up to date with their knowledge unfortunately.

I went private and now know I have Hashimoto's and secondary hypothyroidism; I am not under any treatment because the stats of taking synthetic hormones do not give me hope, but mostly because in the UK the GPs and Endo told me they will only give me T4 and only if I want to get pregnant - if I don't plan to get pregnant then no treatment for me 😂

I am sorry you have this, it is a nasty disease. I am managing mine with diet and trying to relieve stress - stress is your biggest enemy.

[Jaydee1507 Administrator in reply to Fee52]

I've just been told everything is fine, it just means you may develop thyriod disease in the future.

That's pretty standard for the NHS and also what I was told many years ago. It seems to be the way doctors are taught, but thyroid patients view it differently and talk about it differently too.

In that getting a diagnosis hinges around a raised TSH level it would pay you to always insist on an early blood test at 9 am or sooner. TSH varies throughout 24 hours and is highest at that point of the day. See attached graph.

The best thing you can do is push for regular monitoring every 3-4 months and also vitamin testing. Post results here for comments when you have them.

Hashi's can simmer for quite some years before your TSH goes above range and supplementing vitamins can really help symptoms.

TSH 24hr rhythm

[JoJoloveschocolate in reply to Fee52]

I felt the same as you. I’ve had loads of hypo symptoms for years. My tsh only recently went just above hospital testing range at 4.7 and my t4 was low in the hospital testing range at 9. My Tpo test was normal, but when I had antibodies tested privately I was positive for elevated Tg antibodies. The Doctors comment that came with the blood results said this could be related automimmune thyroid, especially Hashimotos. I showed the results to my own doctor who waffled on a bit about antibodies possibly pointing to “degree of autoimmunity” but it was fine and to basically forget about it and not to worry about it. It feel like I’m being held in an odd kind of void of “un-diagnosis”. It made me wonder and worry why everyone seemed reluctant to make a definite diagnosis. I think it is important to know these things for sure as my mother has autoimmune illnesses too. The doctors were quick enough to diagnose me with Chronic Fatigue Syndrome/Fibro when there were no actual definitive markers/tests for that, but seem reluctant to diagnose something else based on actual blood test results. I find it all very strange, especially when I find out this happens to other people too.

[Fee52 in reply to JoJoloveschocolate]

Omg same! Why won't they just say what it is! I am so confused. My mum has MS so I too am mindful of auto immune diseases. I feel like they're basically saying wait until enough of your thyriod is destroyed to merit treatment. Even that's a push because no one has given this a name. I am so frustrated. Yes I'll probably look into paying now but it seems ridiculus.

[RedApple Administrator in reply to Fee52]

'Why won't they just say what it is!'

In the UK, the name hashimotos isn't generally used by medics. That name seems to have perpetrated the patient community from the USA. Here, it's just called auto-immune thyroid disease (AITD).

'they're basically saying wait until enough of your thyriod is destroyed to merit treatment'

Yes, that is effectively how it works, although that's not how your GP sees it. Your GP just goes by the TSH number being out of range, and maybe FT4 if you're lucky.

I think the theory is that out of range antibodies doesn't always translate into a need for replacement thyroid hormone.

[JoJoloveschocolate in reply to RedApple]

I do find it very strange that the term Hashimotos isn’t used by medics in the UK as it does appear on the NHS site, Patient UK, Thyroid UK, BTF. My Gp wouldn’t even say I had AITD. When I asked him he just skirted around it all and said don’t worry about it. I’m not worried about the antibodies as such, but I am concerned about something that may be autoimmune in origin as my mother has R.A and I believe that once you have an autoimmune disease you can be susceptible to others.

[helvella Administrator in reply to JoJoloveschocolate]

The definition of Hashimoto's is often taken to include having a goitre.

There is another named disorder, Ord's, which is pretty much Hashimoto's without a goitre. And that form appears more common in those with genetic backgrounds from northern Europe - Scandinavia, the UK, Ireland and maybe some other close places.

We have seen at least a few people told that they categorically did not have Hashimoto's simply because there was no current or previous evidence of a goitre.

In my book, I'd rather refer to autoimmune thyroid disease - even if then divided into two or more forms. For example, "with goitre" and "without goitre".

But we do absolutely need to be aware of all the names.

[JoJoloveschocolate in reply to helvella]

Thank you for clarifying. I think I may have also read a description somewhere of Hashimotos as being either goitrous or atrophic…both conditions under the same umbrella term. I might also be getting confused! My first gp didn’t explain anything and said just start a trial of levothyroxine (raised tsh/symptomatic/low in tange t4). The second gp I saw and asked about the positive antibodies didn’t call it AITD/Hashimotos/Ords or anything. He just said the antibodies might suggest a degree of autoimmunity…but that statement isn’t the same as a giving a diagnosis. It’s as if no one wants to say out loud what it is! lol… That which must not be named 😆😆

[helvella Administrator in reply to JoJoloveschocolate]

Lack of a definitive "dictionary" of medical definitions is a genuine problem.

There are things like SNOMED - but they are hardly simple to use for ordinary folk like us!

digital.nhs.uk/services/ter...

[JoJoloveschocolate in reply to helvella]

Blimey! I had no idea…

[RedApple Administrator in reply to JoJoloveschocolate]

Old school medics tend not to use the term hashimotos because it wasn't used here in their day. At diagnosis many years ago, my GP confirmed that I had autoimmune thyroid disease, and that's likely what was recorded at the time.

' I believe that once you have an autoimmune disease you can be susceptible to others.'

Treating or not treating AITD isn't known to have an effect on susceptibility to other autoimmune conditions. You'll either get them or not (hopefully not of course 🙂)

[JoJoloveschocolate in reply to RedApple]

That’s exactly what I would like - for the Gp to actually confirm that it is auto immune thyroid disease…to acknowledge that. I sort of feel in a strange way like I have diagnosed myself!! Thank you for your reply. Very glad to know I’m not at higher risk of getting any other autoimmune issues than anyone else. That puts my mind at rest as my mum has R.A.

[RedApple Administrator in reply to JoJoloveschocolate]

My mother had RA too. Keeping fingers crossed I won't!

[JoJoloveschocolate in reply to RedApple]

Sorry to hear that. My mum had a lot of pain in her wrists and shoulders and eventually had to have a wrist-replacement and steroid injections. She then started on weekly injections to slow the process down. One problem I had before I started the levothyroxine was the joints at the tips of my index fingers becoming painful and swollen. It seems to have settled down now and I’m wondering/hoping that it might be more hypo-related.