hypothyroidism but NO anti TPO antibodies. What... - Thyroid UK

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hypothyroidism but NO anti TPO antibodies. What else can be the cause?

Chelle1097 profile image
31 Replies

Hi everyone, I need help please.

My TSH is 11 [0.3-5.5]

My T4 is 12.4 [10-22]

anti thyroid peroxidate antibody is 0

Since Hashimoto/autoimmune thyroiditis is ruled out and i have not be referred for further testing.

What else can be the cause?

What should I request from my doctor please?

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31 Replies

Tg antibodies could still be possible, but also you might just be sero-negative. I was initially diagnosed as sero-negative (hashimoto’s but no antibodies showing up) your TSH and low T4 are demonstrative of overt hypothyroidism. Do you know your T3? 😊

Chelle1097 profile image
Chelle1097 in reply to

Thank you for reply. I was not tested for T3. Did you eventually test positive for Anti-TPO/TG antibodies?

in reply to Chelle1097

You will definitely need your T3, that is the active hormone. T4 is just the storage form. Yes, about 12 years after onset I had some antibodies show up but nothing dramatic.

Chelle1097 profile image
Chelle1097 in reply to

Thank you, I will request T3👍

Sparklingsunshine profile image
Sparklingsunshine in reply to Chelle1097

Hi

I've had two lots of antibody tests, once privately, once by NHS, both negative, done 4 years apart. So I can only conclude my hypothyroidism isn't caused by Hashimotos. Some with Hashis apparently don't have antibodies.

There are other causes of hypo, problems with pituitary gland, pregnancy can be anothercause, lack of iodine in the diet. It's much rarer to have non autoimmune hypothyroid.

Ultimately though the treatment is the same, irrespective of the cause. Replacement thyroid hormones, either by Levothyroxine via NHS or NDT, or just replacement T3. Or a combination. It's very hard to get NDT on NHS or T3 for that matter. However your TSH is over 10 so you should be offered Levothyroxine. Was this your first abnormal blood test?

Chelle1097 profile image
Chelle1097 in reply to Sparklingsunshine

thank you for reply🙂, this was first abnormal test. I started on 25mcg

greygoose profile image
greygoose

How many times have you been tested for TPOab? One negative result does not totally rule out Hashi's because antibodies fluctuate. Or, as Hidden says, your TgAb could be high. But, even if that's negative, there's a certain percentage of Hashi's people that never even have over-range antibodies, and they are diagnosed by ultrasound of the thyroid.

If it turns out that you don't have Hashi's - and not all hypos do - there's not much chance of finding out why. There are so many possibilities. Could be a pituitary problem - although that would have showed up on diagnosis - or an accident, like whiplash. Or endocrin-disrupters in cleaning and beauty products. Or eating disorders. Or certain medications, like lithium. But, whatever the cause, as the treatment is always the same, doctors really aren't interested in finding out why. And, in any case, the chances of being able to reverse it are minimal. So, one has to ask: does it really matter?

And, even if you do find you have Hashi's, there then arises they question: why did I develop Hashi's? And, your chances of finding an answer to that are pretty slim, too, because there are many, many possible causes. But, once again, whatever the cause, the treatment is the same, so... :)

Chelle1097 profile image
Chelle1097 in reply to greygoose

Thanks for the info. very helpful. This was my first test and will request an ultrasound.

greygoose profile image
greygoose in reply to Chelle1097

You're welcome. :)

Jaydee1507 profile image
Jaydee1507Administrator

Welcome. Have you been started on treatment yet?

Hashimoto's isn't ruled out. A percentage of Hashi's people never show positive antibodies so you could still have it. get GP to retest when you can and if you do any private bloods.

Chelle1097 profile image
Chelle1097 in reply to Jaydee1507

thank you for the advice I will do so 👍

SeasideSusie profile image
SeasideSusieRemembering

Chelle1097

I was diagnosed hypo back in 1975, 2 years after first becoming unwell and a clueless doctor. I have had quite a few antibody tests over the years, all private and many part of a test bundle, each time antibodies very low in range. I don't have Hashi's and I've never had the swings that Hashi's causes.

Although Hashi's is the most common cause of hypothyroidism. Other causes, as listed by Dr Peatfield in his book "Your Thyroid and How to Keep It Healthy:

Genetic - thyroid gland may not develop properly in the womb, may be totally inactive or partially inactive.

Environment - iodine deficiency, selenium deficiency, environmental poisons such as mercury, fluoride (not naturally occurring fluoride but the toxic waste fluoride added to toothpastes, water, etc).

Thyroid suppressing drugs - eg Lithium, Amiodarone

Glandular fever/Epseine-Barr virus

Major Trauma

Thyroid Trauma

Surgery

Pregnancy

So I wouldn't worry about the cause, nothing to request from your doctor, whatever the cause the treatment is the same.

helvella profile image
helvellaAdministratorThyroid UK

I don't know why I am hypothyroid.

Would I like to know? Yes.

But what difference would it make? If there is no known way of treating the actual cause, it wouldn't actually make much difference!

That isn't to say you shouldn't look, and try to identify causes and contributory factors. Just that it is likely more important to consider what to do.

SlowDragon profile image
SlowDragonAdministrator

Significant minority of Hashimoto’s patients only have high Thyroglobulin antibodies

NHS only tests TG antibodies if TPO antibodies are high

So you need to test both TPO and TG antibodies tested privately

If both antibodies are negative

20% of Hashimoto's patients never have raised antibodies 

healthunlocked.com/thyroidu...

 

Paul Robson on atrophied thyroid - especially if no TPO antibodies 

 paulrobinsonthyroid.com/cou...

Absolutely essential to test vitamin D, folate, B12 and ferritin

Have you had these tested

What vitamin supplements are you currently taking

CKD and low GFR can be CAUSED by being hypothyroid and significantly improved by correct treatment of hypothyroidism

ncbi.nlm.nih.gov/pmc/articl...

The GFR is reversibly reduced (by about 40%) in more than 55% of adults with hypothyroidism[40] due to several reasons

academic.oup.com/jcem/artic...

Thyroid hormone therapy not only preserved renal function better, but was also an independent predictor of renal outcome in chronic kidney disease patients with subclinical hypothyroidism.

Standard starter dose of levothyroxine is 50mcg

Bloods should be retested 6-8 weeks after each dose increase

Likely to need several further increases in levothyroxine over coming months

Chelle1097 profile image
Chelle1097 in reply to SlowDragon

This was very informative . Thank you. I will definitely test for anti TG. i do not take any supplements so i will test for vitamins listed. Hopefully my GFR will improve as I dont have diabetes or hypertension. Thanks again

SlowDragon profile image
SlowDragonAdministrator in reply to Chelle1097

Looking at your profile, you have dark skin

Are you based in U.K.

Low vitamin D is extremely common across the U.K. population, but especially with darker skin

Request GP test vitamin D BEFORE you start supplementing

If extremely low you will need high dose vitamin D prescribed via GP

NHS Guidelines on dose vitamin D required

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...

nhs.uk/conditions/vitamins-...

Low vitamin levels are also very much more common when hypothyroid, especially with autoimmune thyroid disease (hashimoto’s)

Chelle1097 profile image
Chelle1097 in reply to SlowDragon

ohhh thats interesting. I am darkskin and based in the UK. thanks again👍

SlowDragon profile image
SlowDragonAdministrator in reply to Chelle1097

UK Government guidelines are that everyone should supplement vitamin D between October and April

gov.uk/government/publicati...

All Patients with autoimmune thyroid disease should have vitamin D tested annually 

pubmed.ncbi.nlm.nih.gov/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

pubmed.ncbi.nlm.nih.gov/273...

Vitamin D insufficiency was associated with AITD and HT, especially overt hypothyroidism. Low serum vitamin D levels were independently associated with high serum TSH levels.

pubmed.ncbi.nlm.nih.gov/300...

The thyroid hormone status would play a role in the maintenance of vitamin D sufficiency, and its immunomodulatory role would influence the presence of autoimmune thyroid disease. The positive correlation between free T4 and vitamin D concentrations suggests that adequate levothyroxine replacement in HT would be an essential factor in maintaining vitamin D at sufficient levels.

ncbi.nlm.nih.gov/pubmed/300...

Our results indicated that patients with hypothyroidism suffered from hypovitaminosis D with hypocalcaemia that is significantly associated with the degree and severity of the hypothyroidism. That encourages the advisability of vit D supplementation and recommends the screening for Vitamin D deficiency and serum calcium levels for all hypothyroid patients.

Same applies to low B12 - extremely common in hypothyroid patients 

All patients who are hypothyroid should have B12 tested 

ncbi.nlm.nih.gov/pubmed/186...

There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms, although a placebo effect cannot be excluded, as a number of patients without B12 deficiency also appeared to respond to B12, administration.

ncbi.nlm.nih.gov/pubmed/169...

ncbi.nlm.nih.gov/pmc/articl...

Levothyroxine can decrease serum homocysteine level partly; still its combination with folic acid empowers the effect. Combination therapy declines serum homocysteine level more successfully.

Low ferritin frequent in hypothyroidism endocrineweb.com/profession...

SlowDragon profile image
SlowDragonAdministrator

PCOS and Hashimoto’s strongly linked

endocrineweb.com/news/thyro...

palomahealth.com/learn/pcos...

Chelle1097 profile image
Chelle1097 in reply to SlowDragon

This was the reasoning behind why my doctor had tested my thyroid, but i never understand why so thank you for the articles.

Brightness14 profile image
Brightness14

None of my family have ever had antibodies but 5 of us have thyroid problems. Two without a thyroid the rest just on medication. My partner has antibodies but no symptoms apart from a high TSH reading. I have been tested many times, so has my sister both have no antibodies.

Chelle1097 profile image
Chelle1097 in reply to Brightness14

Did your ultrasound or family's ultrasound eventually show changes consistent with hashimoto?

buddy99 profile image
buddy99

My TPO is normal, but my TgAb is high. When I was only tested for TPO I was told I did not have Hashimoto's. Fortunately, I knew already that I do because TgAb had been tested before and was high. Just to be on the safe side I tested for it again privately and it was still high. So, contrary to what I was told, I was not in remission (sadly). You should not rule out Hashi just yet. Most importantly, I would think, is to get your hormone levels in order for now, though.

buddy99 profile image
buddy99

Furthermore, the Hashimoto's had been diagnosed by ultrasound which showed significant destruction of the thyroid and consequent atrophy. So, to be "diagnosed" with no Hashi was just based on that specific doctor's complete lack of knowledge. This is a good place to come to and collect as much knowledge as you can because many doctors sure don't have it.

Miffie profile image
Miffie in reply to buddy99

I am interested in your comments regarding Hashimotos and atrophied thyroid. It has, for many years, been my understanding that Hashimotos cause destruction of the gland but not any atrophy and that most Hashi patients retain full sized thyroid gland throughout adult life.

Indeed in my case it was believed my thyroid was destroyed by radiation therapy in the early 1950s. I had a scan about 10 years ago and was told I had the smallest thyroid he had ever seen. I was diagnosed sixty years ago and at the time of the scan I was advised it confirmed no Hashimotos. I have always had negative antibodies. There was some discussion of Ords if any autoimmune cause, however they decided the originally suggested cause was correct.

Where can I learn more about Hashimotos as the cause of atrophy please. It makes no difference to me now but I’d be interested to learn more. Thank you.

buddy99 profile image
buddy99 in reply to Miffie

Ord's is actually the correct term for thyroiditis causing atrophy, but I have learned to just use the term "Hashimoto's", which is already enough of a challenge for many doctors I encountered (let alone most "ordinary" people). Hashimoto's is thyroiditis with a goiter. So, I too, have Ord's.

Maybe this will shed some light: ada.com/conditions/thyroidi...

Miffie profile image
Miffie in reply to buddy99

I questioned why you called atrophied thyroid Hashimotos it seems you just prefer to use the wrong terminology. Had you said the scan you had confirmed autoimmune thyroiditis that would have been clearer in my opinion.

There really was no need for you to go to the trouble of providing a link to confirm something I had known for many years.

buddy99 profile image
buddy99 in reply to Miffie

You are absolutely right. Thank you for the correction. I'm hoping to be more precise with my words in the future. It certainly is a very worthy goal.

As far as the link goes, I apologize for misinterpreting your post and providing information that you have been aware of for many years. While it merely reiterates knowledge you already have, I hope that the link may be at least of some use to somebody else, as I perceive it as very comprehensive.

Thanks again for taking the time to set me on the right path. All my very best wishes for health and happiness.

Dizzy444 profile image
Dizzy444

I had subacute thyroiditis supposedly caused by a virus. My antibodies are normal and I’m on levothyroxine, for all the good it does.

I often wonder if the advice given to those with Hashi’s is relevant, such as gluten free diet etc

My t3 has never gone above the bottom range despite my t4 being slightly over the top range. Also there is little information regarding the cause, although mine started a few days after my first flu jab. Doctors dismiss this as a cause but my own research shows there are some links

Dizzy444 profile image
Dizzy444

I would add that I’ve not had any significant weight gain. My cholesterol is high and also I’m pre diabetic despite a very healthy diet.

JackieVest profile image
JackieVest

I've been on thyroid meds for nearly 40 years and I've never had antibodies. Mother and grandmother also hypothyroid. Idiopathic? Don't know.

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