Positive thyroid antibodies: Hello! I have... - Thyroid UK

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Positive thyroid antibodies

ClarissaN profile image
19 Replies

Hello! I have recently been told I have positive thyroid antibodies. I appreciate this isn't as serious as most other thyroid conditions but I wonder if anyone could help me with suggestions to alleviate the tiredness. I am told there is no treatment and vitamin D3 which the GP suggested hasn't made any difference. Thank you.

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ClarissaN
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19 Replies
Regenallotment profile image
RegenallotmentAmbassador

Hello and welcome! How high were your antibodies? Which type do you have?

Did they measure your TSH, FT4 and FT3?

If you post those here with ranges folks will share their knowledge and personal experience.

I have TPO antibodies ( 255 with range <34 which confirms Hashimoto’s Thyroid Disease and have hypothyroidism. I take daily Levothyroxine (have gone up from stater dose 25mcg to 100mcg over the last 12 months).

my symptoms were tiredness heavy periods, ache, pains, hair loss, digestive trouble etc.

I was advised to privately test my vitam levels for D, B12 Ferritin and Folate and supplement accordingly. D3 took months to improve and I needed almost triple what the doctor prescribed to get it to rise and to take as an oral spray as my gut health is so poor I wasn’t absorbing). That might explain why it’s not working for you.

Loads more ideas for you but don’t want to overload, it would be helpful to know your results to tailor the answers.

🦋💚🦋

ClarissaN profile image
ClarissaN in reply toRegenallotment

Many thanks for your reply. You are suffering with lots of symptoms.

I am still finding my way around the terminology but I think I was tested for the things you mention. This was my test result! Hope no-one minds me posting it. I am taking Vitamin D3 1000iu and I was prescribed a course of folic acid earlier this year. I also had stomach troubled earlier this year but it seems to have gone now. I am convinced all this was a result of having covid. I'm not sure if others have found this but I will do a search.

Values and Investigations (Latest Value)

09-Sep-2022

! THYROID PEROXIDASE IGG AB - (Mark16311) - Abnormal - patient contacted

! Thyroid Peroxidase IgG Ab

153

kU/L

0.00 - 33.00kU/L

09-Sep-2022

Thyroid function test - (Mark16311) - Normal - No further action

Serum free T4 level

14.8

pmol/L

10.50 - 24.50pmol/L

Serum TSH level

3.89

mU/L

0.27 - 4.20mU/L

Regenallotment profile image
RegenallotmentAmbassador in reply toClarissaN

results here SlowDragon

So antibodies confirm autoimmune thyroid disease also know as Hashimoto’s.

TSH tends to be used for diagnosis nowadays (historically it was symptoms and low body temperature) normal people have a TSH around 1. For context my TSH was 4.8 and then 5.5 (6 weeks later) which got me started with treatment. Testing early morning 8-9am fasting, no biotin supplements for 3-5 days before to get highest likely reading. I use Monitor my Health and Medichecks for private finger prick testing.

Once on medication TSH should pretty much be ignored but unfortunately the medical profession are obsessed with it.

Regular testing will help you monitor what’s going on. With Hashimoto’s we have occasions in life when our thyroid is over active, we get a bit jittery and lose weight seemingly effortlessly, then over time these episodes reduce and we turn hypothyroid get tired, gain weight seemingly unrelated to diet and exercise. So don’t be surprised if when you test the results differ from time to time.

Most useful (aside from this forum which has been the number 1 help) has been Izabella Wentz books, Have a read, you’ll be able to do a lot to help yourself 🦋💚🦋

ClarissaN profile image
ClarissaN in reply toRegenallotment

Thank you Regenallotment. I have noted everything you have said.

SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

First thing is, do you have any actual blood test results?

if not …….You are legally entitled to printed copies of your blood test results and ranges.

ESSENTIAL to see exactly what GP has tested

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

 

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

plus both TPO and TG thyroid antibodies tested at least once

High thyroid antibodies confirms you have autoimmune thyroid disease

What were thyroid antibodies results

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

Low vitamin levels are EXTREMELY common with autoimmune thyroid disease

How low was vitamin D

How much vitamin D are you currently taking

Vitamin D needs retesting 2-3 months after starting supplements

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 (Hashimoto’s or Ord’s thyroiditis)

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 on here that all thyroid blood tests early morning, ideally just before 9am

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

was your test done early morning?

How high was TSH?

Retest again 2-3 months after improving low vitamin D

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...

cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

monitormyhealth.org.uk/full...

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

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...

ClarissaN profile image
ClarissaN in reply toSlowDragon

Many thanks for your very detailed and informative reply. My blood test was done at 9.50 so maybe too early. Could I please refer you to my reply to Regenallotment? I will ask my Gp for a blood test to retest the various vitamins etc. but will go for private one and thanks for the links. I am bewildered about the possibilities but joining this forum was a good idea! Plenty of info to look at!

SlowDragon profile image
SlowDragonAdministrator in reply toClarissaN

So TSH might be a little higher at 9am

You need to know how low vitamin D was

And essential to test folate, ferritin and B12

How long since you finished folic acid

You should have had B12 tested at same time that low folate was diagnosed

ClarissaN profile image
ClarissaN in reply toSlowDragon

I am sure I was tested for pretty much most things in February and only folic acid was low then. I finished that a few months ago. I think I should get myself tested again. Thank you SlowDragon

SlowDragon profile image
SlowDragonAdministrator in reply toClarissaN

Check your results from Feb

We need OPTIMAL vitamin levels

NHS only tests and treats vitamin deficiencies

Optimal vitamin levels are

Vitamin D at least over 80nmol

Serum B12 at least over 500

Active B12 at least over 70

Folate and ferritin at least half way through range

ClarissaN profile image
ClarissaN in reply toSlowDragon

Thanks SlowDragon

SlowDragon profile image
SlowDragonAdministrator

Vitamin D

NHS Guidelines on dose vitamin D required depending on what result was

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

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

Some areas will prescribe to bring levels to 75nmol or even 80nmol

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...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

Also with autoimmune thyroid disease it’s very common to need higher dose vitamin D to improve low levels

pubmed.ncbi.nlm.nih.gov/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 NHS private testing service when supplementing 

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. 

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

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

Vitamin D and thyroid disease 

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease 

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

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...

Lulu2607 profile image
Lulu2607

Hi Clarissa. My results were similar to yours in 2014 and no action was taken as T4 and TSH were in range. Drs won't give levo for results that are in range, but as you have antibodies they should check your TFT regularly as this can change. My TSH went sky high during lockdown (161) and no detectable T4. Lockdown had meant no proper testing and phone appointments only so my awful severe symptoms weren't seen. I am now on levo of course. Your Dr should investigate your tiredness which can be due to many reasons. Could it be long covid as you initially suspected? I also take D vitamin as I was told recently my level was 30 but a hospital Dr told me many many people are deficient but probably don't know it ie not just hypothyroid patients who are more vulnerable to poor vitamin levels generally. My advice would be to keep an eye on your TFT results as the antibodies will continue to attack your thyroid and at some point you will probably be prescribed levo. I'm not as wise about the complexities of thyroid complaints as others on here but I can only tell you my own experiences. This forum is a lifeline for queries as I haven't met a Dr yet who is particularly knowledgeable, or interested about thyroid beyond treating it as a numbers game.

ClarissaN profile image
ClarissaN in reply toLulu2607

Hi Lulu2607, I'm sorry you have been having a hard time with this. I initially went to the GP for fatigue and stomach trouble, thinking it was long covid and they investigated quite well, I think. So I'm thinking the fatigue is due to the thyroid issue. Thank you for your insights, I honestly think my GPs are doing what they can (even though my surgery is now under special measures!) and the best thing I can do is keep myself tested as you and others here have suggested. Thanks very much!

SlowDragon profile image
SlowDragonAdministrator in reply toClarissaN

Poor gut function is extremely common hypothyroid symptom

Bloating, acid reflux, indigestion etc etc

Many medics aren’t even aware that autoimmune thyroid disease and gut issues are closely interconnected

Extremely common to develop gluten intolerance/dairy intolerance with Hashimoto’s

GP should do coeliac blood test BEFORE considering trial on strictly gluten free

ClarissaN profile image
ClarissaN in reply toSlowDragon

Oh my goodness all this is a revelation! Thanks SlowDragon.

SlowDragon profile image
SlowDragonAdministrator in reply toClarissaN

Thousands of posts on here about low stomach acid 

healthunlocked.com/search/p...

Web links re low stomach acid and reflux and hypothyroidism 

nutritionjersey.com/high-or...

stopthethyroidmadness.com/s...

thyroidpharmacist.com/artic...

 How to test your stomach acid levels 

healthygut.com/articles/3-t...

meraki-nutrition.co.uk/indi...

huffingtonpost.co.uk/laura-...

lispine.com/blog/10-telling...

But never assume you have low stomach acid 

healthygut.com/4-common-bet...

Dandelions profile image
Dandelions

I wonder what makes you say it isn't as serious? It's hard to get taken seriously by medical professions when you have thyroid disfunction. And I wonder if you just got send home (like me) with the message 'It's nothing really. Don't even think about it'.

And although it's not something to panick about, your antibodies confirm that you have Hashimoto's. I have found symptoms debilitating at times. Do you feel very tired? Feeling tired like can be really debilitating, but it's easily dismissed by a doctor. And it messes with your mental health.

So I'm glad you've found this forum . Through this forum I'm finding out ways to learn about my condition and manage my health. I wish the endo had started that conversation with me when I was diagnosed. But taking it seriously now is making a massive difference to me already.

So I just wanted to leave you a message to say, that there's lots of help on this forum. Lots to learn about your condition. And it's well worth it to make sure you or doctors don't easily dismiss your experience. And there are things you can do to feel better.

Best wishes!

ClarissaN profile image
ClarissaN in reply toDandelions

Hello Dandelions. Thanks very much for your reply! I'm grateful for all the replies I have had. Having a label on the condition now is a bit scary but actually it's a good thing as I haven't had much sympathy so far because I have been vague about it and people only usually know about hypo and hyperthyroidism so they can be dismissive. I will also be a bit more assertive about asking for another blood test. But I will do private if I have to. Yes I am so tired for much of the time. I like self-help and am glad you have benefitted from the forum, clearly an excellent resource.

Dandelions profile image
Dandelions in reply toClarissaN

Yeah, it's strange what a label does to your thoughts about it and people's perception of it. Isn't it. But from here...upwards and onwards! 🙂

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