Hi I'm new here and would like some advice inte... - Thyroid UK

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Hi I'm new here and would like some advice interpreting some results please? Thyroid Peroxidase antibodies +ve

akrlon profile image
10 Replies

Hi I'm new here and would like some advice interpreting some results please?

I've been severely ill with suspected ME-CFS for 9 months (mostly housebound / bedbound). Recent appointment with Rheumatologist involved antibody testing.

Amongst the results in the clinic letter were the following:

"Thyroid Peroxidase antibodies +ve (new finding), TFTs are unremarkable.

TSH 0.29 (borderline low), Free T4 13.2 (normal)"

Dr Google says Thyroid Peroxidase is indicative of autoimmune Hashimoto's or even Graves. Is this always the case?

Do the other more 'normal' results outweigh this?

Many thanks in advance for your commentary.

Stay safe.

PS No further detail (yet) such as reference ranges.

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akrlon
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greygoose profile image
greygoose

Hi akrlon, welcome to the forum. :)

Dr Google says Thyroid Peroxidase is indicative of autoimmune Hashimoto's or even Graves. Is this always the case?

Yes, it is.

Do the other more 'normal' results outweigh this?

I'm afraid not.

Hashi's is a disease where the immune system slowly destroys the thyroid, mistaking it for the enemy. With Hashi's, thyroid status can swing between hypo and false hyper, as the dying cells dump their stock of hormone into the blood.

Grave's is where the patient is permanently hyper with a suppressed TSH and very high FT4 and FT3. So, looking at your results, it's more likely you have Hashi's because the TSH is not suppressed and I would imagine the FT4 is low. However, as you haven't given the range for the FT4, it's difficult to say how low. Please, always give ranges with results, because they vary from lab to lab.

Your results are saying that you are not hypo or 'hyper' at the moment. But, it rather looks as if you have been 'hyper' recently, and your TSH hasn't yet recovered. Are these the first thyroid labs you've had? If you've had others, can you post the results and ranges for comparison? You can expect levels to jump around a bit, with Hashi's.

Marz profile image
Marz

Although you have not posted ranges youd FT4 does look low - this is an inactive hormone which needs to convert into the Active T3. So that too could be low in the range. It is low T3 that can be the cause of symptoms and be linked to ME/CFS.

Vitamins and minerals need testing too - B12 - Folate - Ferritin - VitD. When low in range than cause you to feel unwell.

SlowDragon profile image
SlowDragonAdministrator

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

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)

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

20% of Hashimoto's patients never have raised antibodies so an ultrasound scan of thyroid can be helpful

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

akrlon profile image
akrlon in reply toSlowDragon

Thank you.

It sounds like I do have TPO antibodies though?

Noted about the vitamins and minerals - as per my reply to @Marz -

I had very severe Vitamin D deficiency diagnosed in January just after I first became ill.

Apparently B12 and folate were 'normal' 3 weeks ago (but I've been on a mixture of Dr Myhill and Nancy Klimas' vit and min supplements for 7 months and keto diet).

SlowDragon profile image
SlowDragonAdministrator in reply toakrlon

Always get actual results and ranges on all tests

Normal, just means within range...often at bottom of range

How low was vitamin D

How much vitamin D did GP prescribe.

Presumably you have retested vitamin D since?

Vitamin D

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing 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. There’s a version made that also contains vitamin K2 Mk7

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

Calculator for working out dose you may need to bring up to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

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

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

What was actual TPO result?

akrlon profile image
akrlon in reply toSlowDragon

Thanks - what a wealth of info!

My Vit D was very severe - 15. (in Jan).

It was retested about 8 weeks ago and it had gone up significantly after a course of Vit D and some sunbathing - but I need to check what it had gone up to as I can't remember (I've just moved, changed GP and can't access records due to changeover ...)

It still wasn't where it needed to be though.

Don't know TPO result - I'm just recounting what was in the Clinic Letter which has taken me 3 weeks to extract from them - as mentioned in reply to Grey Goose, I need to chase this Rheumatologist ... and this was the first face to face appointment at a hospital since December due to the pandemic ...

I think what I'm getting from this forum is that I might have a thyroid problem and I need to press the NHS docs because they are being lax. Or go to a private Endo to get properly checked over.

SlowDragon profile image
SlowDragonAdministrator in reply toakrlon

First step is to get full thyroid and vitamin testing...either via GP or privately

Come back with new post once you get results

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

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.

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

HLAB35 profile image
HLAB35

This is a very common phenomenon for someone with ME/ CFS. In addition to Hashi's symptoms you may also have other problems which overlap with thyroid problems. These can include food intolerances, fibromyalgia, IBS, adrenal exhaustion, anxiety, yeast overgrowth in the gut, sensitivity to environmental toxins, noise and light sensitivity etc.

A useful resource for ME/CFS is Dr Sarah Myhill's website (if you have not already discovered her). She talks about the thyroid connection, essential vitamins, minerals and amino acids.

She's also pretty keen on promoting a paleo diet with as little processed food and added sugars as possible. Personally, I find this a tad too restrictive. Going gluten and (mostly) dairy free pretty much did the trick for my gut issues with the addition of some key vitamins and minerals. I also have about a third of the sugar I used to have (too much sugar leads to yeast overgrowth).

It's not unusual with CFS to have a 'misleading' TSH (it really cannot be trusted as a guide). Dr Myhill explains this. Be guided by your symptoms and your Free T4 and Free T3 levels instead.

akrlon profile image
akrlon

Thank you. I need to go back and re-read Dr Myhill info.

I went on her regime (supplements and keto) in February and have recently fine tuned it with a few recommendations from Nancy Klimas.

I've recently come off the keto because I just moved and something had to give ... and after having enjoyed indulging a bit, I'm thinking of doing something similar to what you are saying. e.g serious moderation.

In terms of the ME-CFS, I've seen some improvements recently (less POTs, less fatigue) - able to leave the house in the last 6 weeks and stay upright, but other symptoms have come to the fore in their place - more brain fog, headaches, facial tremor, droopy eyelids, memory loss etc.

HLAB35 profile image
HLAB35 in reply toakrlon

A lot of your current symptoms sound like Hashi's, so you must try and get this resolved asap with your GP. Dr Myhill also recommends adrenal supplements as well as thyroid to many of her patients. If you find you're not tolerating the Levo, you may benefit from adrenal support as well (too low or too high cortisol disrupts thyroid hormone conversion). Given your P.O.T.S diagnosis as well it'd be worth asking your Endo to investigate your cortisol and dhea levels.

P.O.T.S is often worsened by low electrolytes, so it's a good idea have some soluble minerals with vitamin C on hand to prevent those symptoms.

Low Vitamin D is very common, and as Slow Dragon says, you may find you're still low unless you've been prescribed proper loading doses with Magnesium and Vitamin K2. Have a look at Seaside Susie's responses on getting vitamin D levels up.

As well as being gluten free (actually I don't find it that restrictive really) do you take Selenium to reduce antibodies? It's worked for many here.

Memory issues or tremors could be low b12, so I hope your levels are not just 'in range'. The Myhill supplements are good, but with Hashi's you'll probably have low stomach acid and enzyme disruption. B12 is the hardest vitamin to absorb (it's a massive molecule) and some of us need injections. Double check your levels. Magnesium, Zinc and p5p are also required for good cognitive function. My son takes a tablet from Igennus that combines all three. It is both calming and helps focus.

The muscle twitching could also be low Calcium (due to low vitamin D). You could ask to get this checked as well.

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