Antibody tests: Hello, new member here hoping for... - Thyroid UK

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Antibody tests

Bride2be profile image
11 Replies

Hello, new member here hoping for a bit of advice! I had an antibody blood test done recently as my mum has myxedema and my thyroid levels have been all over the place especially during and after pregnancy (my baby is 7months old). The blood test came back as positive anti thyroid peroxidase antibody. My GP has said that this means that I will develop hypothyroidism but I have no more information about what of this means or what I need to do/ when I need to get tested again?

Does anyone have any experience of this or any advice on what I can do. I should say that I am suffering a lot with fatigue, muscle aches and heavy periods but the GP is putting this down to post pregnancy.....

Thanks in advance!

K xx

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Bride2be
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greygoose profile image
greygoose

What the antibodies means is that you have Hashimoto's Thyroiditis. More commonly known to UK doctors as Autoimmune Thyroiditis. It is an autoimmune disease where the immune system slowly destroys the thyroid, and is very common after pregnancy.

I'm afraid there's not much you can do. There is no cure of treatment for Hashi's. By the sound of it, your doctor doesn't consider you to be hypo at the moment, but has he actually tested your thyroid hormones? Do you have copies of your blood test results? If so, post them here, with the ranges, and let's have a look. We need to know exactly what has been tested and exactly what the results were, to be able to say if your doctors opinion is correct - in that you aren't hypo yet - and what else needs to be tested. Doctors don't tend to be very good with Hashi's. And are inclined to put symptoms down to just about anything possible, rather than hypothyroidism itself. :)

Bride2be profile image
Bride2be in reply togreygoose

Wow grey goose thank you so much for the info. Really interesting. And sadly despite my mum having a thyroid illness for nearly 50 years she has never had it explained to her as I don’t think gp really understands it- they just respond to the blood test results.

My recent TSH was 0.72 mu/ L and free T4 was 8.3 pmol/ L.

They are within the nhs perimeters but both seem low to me, although I don’t know what that means.

Thank you again- it is good to find a place to talk to people who understand these things!

K x

greygoose profile image
greygoose in reply toBride2be

I don't suppose her doctor does understand it himself, not many of them do.

My recent TSH was 0.72 mu/ L and free T4 was 8.3 pmol/ L.

I did say we need the ranges to understand the results. Ranges are the numbers in brackets beside the results - usually. Ranges vary from lab to lab so we always need the ranges that went with your results. If you can add them, then we can talk about your results. :)

Bride2be profile image
Bride2be in reply togreygoose

Apologies, here they are

TSH 0.72 mu/ L ( 0.3 - 5.0 )

free T4 was 8.3 pmol/ L ( 7.9-16)

Many thanks

K

greygoose profile image
greygoose in reply toBride2be

Your FT4 is very low in range, only 4.94% through the range. And, the problem is, your TSH is also very low. Pity they didn't do the FT3, but they rarely do.

So, your FT4 does not correspond to your TSH. Your FT4 is saying you're hypo, but your TSH disagrees, and doctors only tend to look at the TSH. But, as you have Hashi's, that does tend to complicate things - especially in the beginning. Was your FT4 a lot higher at one point?

I don't really think we can conclude anything from that test because your levels are all upset. It would be a good idea if you could get them done again, in say three months time. But, if you could get private tests, to make sure you get an FT3 result, that would be even better. It would give us a clearer picture of what's going on. And, as SlowDragon says, vit D, vit B12, folate and ferritin should be tested, as well, because they could all be low and causing symptoms. :)

shaws profile image
shawsAdministrator in reply toBride2be

The fact is, in UK, doctors have been told not to diagnose patients until the TSH is 10, whereas in other countries people will be diagnosed if it is above 3+ with symptoms.

We might have lots of clinical symptoms and we used to be diagnosed upon them before blood tests and levothyroxine were introduced as being 'perfect'.

Doctors were well trained upon symptoms and we were given a trial of NDT (natural dessicated thyroid hormones) to see if it improved our symptoms and it was increased slowly.

If your FT4 is so low I think you may well be hypo. T4 is inactive and has to convert to T3 and it is T3 which is the active thyroid hormone needed in all of our T3 receptor cells.

Also - before blood tests were introduced - we were given a trial of NDT according to our clinical symptoms.

GP should also check B12, Vit D, iron, ferritin and folate. In these days I doubt any doctor knows any clinical symptoms of hypo.

thyroiduk.org.uk/tuk/testing/interpretation_thyroid_blood_tests.html

thyroiduk.org.uk/tuk/about_...

I am not medically qualified but had to learn, thanks to TUK before this forum began.

Any blood tests for thyroid hormones have to be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose and the test and take afterwards.

SlowDragon profile image
SlowDragonAdministrator

Your high thyroid antibodies confirms that you have autoimmune thyroid disease also called hashimoto’s

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Heavy periods can be due to being hypothyroid

Heavy periods will also lead to low iron levels. Ask for full iron panel test for anaemia

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamin levels

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone

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.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

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...

restartmed.com/hashimotos-g...

Bride2be profile image
Bride2be in reply toSlowDragon

Thanks for the info SlowDragon- so much to take in.

I have B12 injections every 3 months and take vit D tablets every day as it was really low back before Christmas. My ferritin levels are also regularly checked as it has been very low before and I have had a few iron infusions over the years. I have a blood test next week to check ferritin and fbc.

Didn’t think that it was all related!

SlowDragon profile image
SlowDragonAdministrator in reply toBride2be

So as you have B12 injections it’s recommended on here to also supplement a daily good quality vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low vitamin D and low B vitamins may be linked as explained here

drgominak.com/sleep/vitamin...

healthunlocked.com/thyroidu...

How low was vitamin D?

How much vitamin D were you prescribed?

GP will only prescribe to bring levels to 50nmol. But improving to around 80nmol or 100nmol may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Low vitamin levels are BECAUSE of being hypothyroid

Low vitamin levels frequently lower TSH ...so it becomes difficult to get hypothyroidism recognised and treated

Getting all four vitamins optimal can help reduce symptoms and can raise TSH

Bride2be profile image
Bride2be in reply toSlowDragon

Thank you SlowDragon that is such useful information and I am amazed at how it is linked with my low vitamin levels. My GP is great and normally so proactive but she just really thinks that my symptoms and blood tests don’t suggest anything to suggest an endocrine problem.... but has not suggested what we do about the fact that I will be hypothyroid at some point in my life?!

I can’t remember the exact number but my free t3 was low when tested 3 months ago which is why I was surprised when I was retested recently (tsh and free T4) that the free t3 wasn’t retested?! So maybe a private blood test is the way to go.

Will keep you posted!

K x

SlowDragon profile image
SlowDragonAdministrator in reply toBride2be

To be fair most medics just don’t understand the connection

Many of us ...on levothyroxine...or struggling to get diagnosed....have years or decades of low vitamin levels

Hypothyroidism causes low stomach acid

Stomach needs high acid levels to break down food into nutrients. Poor gut function as result of hypothyroidism leads to low vitamin levels

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