I don't have Hashimotos...... so how come I am ... - Thyroid UK

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I don't have Hashimotos...... so how come I am hypothyroid?

Gilly-F profile image
23 Replies

Seemingly daft questions, but I'm curious (and confused) -

If I didn't test positive for Hashimotos (and I didn't) what else causes UAT ??? Hashimotos is definable with the TPO test and not everyone has it, but if all thyroid disease is classed as autoimmune then what else is it that makes the body attack the thyroid ? Or does it simply stop working for no known reason ? Is it possible that everyone has hashimotos as a starter 'event' ?

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Gilly-F profile image
Gilly-F
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23 Replies
HarryE profile image
HarryE

You need thyroglobulin antibodies tested too, you can have one without the other - I do.

Gilly-F profile image
Gilly-F in reply toHarryE

Thanks Harry ! What is the test for Thyroglobulin antibodies ? Is that different to the TPO test ? I know that you can have one without the other - a lot do, and my question was really HOW do you get it if it's not Hashimotos ?

HarryE profile image
HarryE in reply toGilly-F

Yes it is different. And I don't know the answer to your other question, I was just pointing out that you may still have Hashi's if they haven't tested TgAb

Clutter profile image
Clutter

Gilly-F, 90% of hypothyroidism is due to autoimmune thyroiditis (Hashimoto's). The other 10% is congenital, due to thyroidectomy or RAI, injury, and idiopathic (unknown cause).

As HarryE says, you can't rule out Hashimoto's unless you have thyroglobulin antibodies tested but you'll have to do that privately as NHS just does TPO.

Gilly-F profile image
Gilly-F in reply toClutter

I did see an endo privately and he requested a full screen (via my GP) and I THINK he asked for (and got) thyroglobulin. I will check.

So - if thyroglobulin is the definitive test and Hashimotos is the cause in 90% of cases WHY don't the NHS do the thyroglobulin test ??? What is the 'NHS test' for Hashimotos ??

Sounds like another catch 22 like the 'we don't test T3' protocol.

Clutter profile image
Clutter in reply toGilly-F

Gilly-F, the majority of people have thyroid peroxidase antibodies so TPO is seen as the definitive test. Probably all comes down to cost. Most things do :(

Thyroglobulin and thyroglobulin antibodies are tested by NHS but usually in thyCa patients post thyroidectomy when they are used as cancer markers.

helvella profile image
helvellaAdministrator in reply toGilly-F

Careful. You might realise, but in case not, there are two entirely different tests:

Thyroglobulin antibodies

Thyroglobulin

labtestsonline.org.uk/under...

Gilly-F profile image
Gilly-F in reply tohelvella

Thank you Helvella. So the thyroglobulin test isn't really used/necessary for anyone other than those who have had thyroid cancer ? The link above says "The thyroglobulin blood test is primarily used as a tumour marker to determine the effectiveness of thyroid cancer treatment and to monitor for recurrence. "...... so that would lead me to the conclusion that the TPO test is the definitive one for people like me - yes ?

helvella profile image
helvellaAdministrator in reply toGilly-F

Thyroglobulin antibodies (TGab) AND Thyroid Peroxidase antibodies (TPOab) are both worth doing.

But Thyroglobulin itself is pretty much only used in relation to thyroid cancer.

Gilly-F profile image
Gilly-F in reply tohelvella

That would explain why it is not a 'standard across the board' test on the NHS.

HarryE profile image
HarryE in reply toGilly-F

I would suggest it's because TgAb testing is much more expensive than TPO. But both or either are indicative of Hashi's

galathea profile image
galathea

The uk soil is iodine deficient, along with several other countries. Maybe you simply dont have enough iodine so the thyroid gland has nothing to work with? it needs iodine as a raw material to start making thyroid hormones.

You can buy iodine otc.... Bobbys healthy shop is one online place which sells it too.

G xx

sa1234 profile image
sa1234

I dont have thyroid antibodies as well but I am hypoT.

I read that there are many things that effect thyroid because thyroid is a very sensitive gland.It can easily go under active if you have a lot of stress (environmental,oxidative,emotional).My dr said that I need to keep myself stress free if i want a properly functioning thyroid.Adrenals and thyroid go hand in hand.when cortisol is high ,its suppresses thyroid.I worry a lot abt everuthing.So this might be true in my case.Sugar imbalances also effect cortisol levels which then effect our thyroid.High estrogen also effect thyroid.

Basically a poor digestive system is behind all hormanl imbalances.chronic stress effects our digestion and causes all sort of problems.

My sis was diagnosed hypoT.4 years ago.She was under a lot of stress those days.She started taking t4 but it didnt help her much.So she went on a long holiday with her husband,after coming back she went for her check up and the dr lowered her dose bcz she didnt needed much levo.Anyway,I remember that she took that for couple of months and then the dr said that she dont need it anymore.So she stopped taking it.

Its been 4 years now since stopping her levo and she has not any symptom at all.She has 2 lovely boys and had her second baby 5 months ago.She does go for her thyroid check up and its perfectly Ok.

So i believe that doctrs really need to look at the root cause before treating any disease.But unfortunately,that dont happen :(

Gilly-F profile image
Gilly-F in reply tosa1234

That's interesting ! Yes - I'm pretty certain that extreme and sustained stress over the 5 years before I was diagnosed was highly significant - that stress has been resolved and I feel better now, but I'm still medicated at 150 mcg, but weight loss (hard work!!!) may well now result in the next bloods showing I am over medicated and a reduction of the dose, but if I feel well and my BP and heart rate are fine then I'd resist that. I'm surprised that your sister was taken off T4 and that she no longer needs it as I had been led to believe that medication is for life - but if her blood tests are good, and she is too, then she's lucky - but I think she might be a rare individual !

sa1234 profile image
sa1234 in reply toGilly-F

My sis is not the only one who is lucky.There are many who are not on life time medication and my doc tild me this.....lol

My sister's mom in law was also on levo before but she doesnt take it anymore.

She is also very healthy,happy and so energetic.I couldnt believe it when my sis told me that her mother in law was on levo before.

Anyway,I think doctors need to dig deep and find out the root cause instead of treating us all same.

Im planning to visit my grandmom in US and will visit a functional med doctor there.Im sure that I hv heavy metal toxicity and there is too much bromine,chlorine,fluoride in our food & water.maybe this could be effecting our thyroid.

There are ppl who hv reversed hypothyroidism by eating raw organic food.I talked to a girl in sweden who did that.But eating organic food daily for long is so expensive and I cant afford it right now...lol.

galathea profile image
galathea

Are you a bear getting ready to hibernate? They have low thyroid levels.... :-)

bioone.org/doi/abs/10.1638/...

X. G

Marz profile image
Marz in reply togalathea

...and so do pandas I believe. Hence their mating probs and low birth rate !!

:-)

sa1234 profile image
sa1234 in reply togalathea

Im sorry but I didnt get you.

Im not talking about low thyroid levels but low thyroid function or under active thyroid.So that means high TSH values not low.

galathea profile image
galathea in reply tosa1234

I rather think that bears manage to switch off the pituary response, so the low thyroid levels put them into hibernation and the pituary doesnt increase tsh until its time to wake up.

G x

humanbean profile image
humanbean

If you want 22 different reasons you could read this thread from another forum :

forums.phoenixrising.me/ind...

It is very heavy going and I only understood one or two little bits here and there. :(

It helps if you realise that all the numbers are referring to references that haven't been included in the post. Remove those, and it seems to be a smidgen less confusing.

Gilly-F profile image
Gilly-F in reply tohumanbean

Thanks !! Bedtime reading lol....

humanbean profile image
humanbean in reply toGilly-F

Good for insomnia... :D

Gilly-F profile image
Gilly-F in reply tohumanbean

Can't wait for bedtime lol

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