TSH receptor antibody result high: Hi I’ve been... - Thyroid UK

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TSH receptor antibody result high

Clauds123 profile image
15 Replies

Hi I’ve been told by my endo that they need to keep a watch of my TSH antibody receptor levels as a recent blood test indicated that they were high (0.8 normal range 0 - 0.4 )

Tests also showed the TPO and TgAb levels as normal:

TgAbTPO 10.3 (normal range <34)

TgAb <15 (Normal range: 0 - 34 IU/mL )

Apparently high TSH antibodies can be indicative of Graves? Anyone have any knowledge on this?

Thanks

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Clauds123 profile image
Clauds123
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15 Replies
pennyannie profile image
pennyannie

Hello Clauds :

I'm a bit confused as looking back you are being treated for hypothyroidism and already taking T3 and T4.

An over range TSH Receptor antibody reading is indicative of Graves Disease which is a multi organ Auto Immune disease and generally only gets diagnosed when the thyroid and or eyes are attacked from your immune system.

Do you have any blood test results or symptoms that prompted your TSH receptor antibodies to be tested ?

Quite what you can do to manage this antibody yourself - I do not know -

what did your endo suggest you could do - and mean by saying you should keep an eye on it ?

tattybogle profile image
tattybogle

your TSHReceptor antibodies (TRab) could be the stimulating sort of TRab which cause graves/ hyper .....

or ....... they could be the blocking sort of TRab which cause hypo...

or .......they could be a balance of both (meaning the effects can cancel each other out )

TRab test does not tell you which sort you have .

So having some TRab doesn't mean they are the kind that will cause hyper / graves.

but yes , it would be smart to keep an eye on them , as levels of these antibodies are known to fluctuate ..... and can be responsible for sending patients between hypo hyper and back again with periods of euthyroid in between.. which confuses everyone ....

There is a test that just measures the stimulating ones (TSI~ thyroid stimulating immunoglobulins) .... but unless you are hyper / high T4/T3 there is probably not much point at the moment.

Apparently, quite a few hypo patients do have some TRab ..... but most of us never know about it cos we don't have an endo that is interested enough ( or confused enough) to test for them . ThyroidPatients canada website has lots of info about TRab of all sorts

thyroidpatients.ca/2020/04/... overlooked-how-many-hashimotos-patients with TSHRab ?

thyroidpatients.ca/2020/04/... remissions-and-fluctuations-trab/

thyroidpatients.ca/2020/04/... the-spectrum-of-thyroid-autoimmunity/

thyroidpatients.ca/2018/12/... the-third-type-of-autoimmune-thyroid-disease-atrophic-thyroiditis/

HealthStarDust profile image
HealthStarDust in reply totattybogle

That’s interesting. I thought TRAb were exclusively present in Graves? But, us Hashi could have them too?

How is anyone ever supposed to know if they have hypo or hyperthyroidism with such overlapping antibodies?

Antibodies are such a mystery.

HealthStarDust profile image
HealthStarDust in reply toHealthStarDust

Actually I think this shows it better from thyroidpatients.ca/2020/04/...

Antibodies graphic overlap in hypo and hyper states
tattybogle profile image
tattybogle in reply toHealthStarDust

How is anyone ever supposed to know if they have hypo or hyperthyroidism with such overlapping antibodies?

By their action,

if someone has high T4/T3 / low TSH and positive TRab , then stimulating TRab must be at play.

if someone has low T4/T3/ high TSH and positive TRab, then blocking TRab must be at play (lots of these cases are assumed to be bog standard autoimmune hypo or hashimoto's , because it's very likely they will also have positive TPOab , and because if someone is hypo , no one usually tests TRab so they don't know they have them ~ but if their TRab then change from mainly the blocking sort to mainly the stimulating sort , then they will go hyper (high T4/T3 low TSH) and this will confuse everyone.

HealthStarDust profile image
HealthStarDust in reply totattybogle

So, the any of us with trab can swing from hyper to hyper and vice versa then? Have I understood that correctly?

Also  tattybogle is there a way to Keko which much type of grab are either stimulating or block are “at play”?.

tattybogle profile image
tattybogle in reply toHealthStarDust

So, the any of us with trab can swing from hypo to hyper and vice versa then? Have I understood that correctly?

Yes ,it's relatively uncommon to go from hypo to properly hyper, but it does happen.

Blocking TRab do cause thyroid tissue to atrophy, so if someone's thyroid had already been damaged enough by these, then even if they later changed from having less blocking ones to more stimulating ones, their thyroid may no be able to go really hyper , if it was already too shrivelled up to make much T4/T3.

Also it's possible to have Hashimoto's damaging the thyroid and have TRab .... same thing could happen here , ie. if thyroid is already to damaged / fibrosed, then no amount of stimulating TRab can make it produce enough T4/T3 to make the body hyper.

what happens in an individual all depends on the levels and balance of the relative antibodies and on the amount of damage done to their thyroid at that time.

tattybogle profile image
tattybogle in reply toHealthStarDust

Also tattybogle is there a way to Keko which much type of grab are either stimulating or block are “at play”?.

lol . can i have that bit again in english ?

HealthStarDust profile image
HealthStarDust in reply totattybogle

I shall try again a bit later.

HealthStarDust profile image
HealthStarDust in reply totattybogle

So, in essence, I was trying to find ask if there is a way for people to distinguish which type of trab, stimulating or blocking, via a bloood test for example?

It seems very likely that when we are talking about ‘hashi swing’ or someone spontaneously transitioning from a hypothyroid to hyperthyroid state it is as these trabs are at play.

tattybogle profile image
tattybogle in reply toHealthStarDust

Stimulating TRab can be tested for , by TSI test , (thyroid stimulating immunoglobulins)

Blocking TRab are more tricky to test , TBI test is technically possible ( thyroid blocking immunoglobulins) in research settings , but as far as i know there is not a commercially available test for them .

TRab tests count stimulating and blocking ( and neutral) forms together , but can't tell you how much of each .

most cases of 'hashi swings' are probably going to be just that ( dumping of pre formed T4/T3 as a result thyroid tissue is being damaged by immune system )

cases of people transitioning from hypo to properly hyper ie. thyroid continually producing high enough T4/T3 to need Carbimazole to reduce T4/T3 production do seem to be relatively rare.

but obviously there is nowhere near enough research done on these interesting antibodies ,,, and as hardly any hypo patients ever get TRab tested , there is bugger all data to look at .

HealthStarDust profile image
HealthStarDust in reply totattybogle

Agreed. We really do need much more research on thyroid, and especially the antibodies. I do believe they tell a story if only researchers were bothered to look!

HealthStarDust profile image
HealthStarDust

P.S. thanks tattybogle

HealthStarDust profile image
HealthStarDust

Hi Clauds, reading the comments form the more experience people on your post suggest people with both hyperthyroidism as well as hypothyroidism have TRab (TSH receptive antibody).

I hope you let us know more when you know more about it from your Endo.

Clauds123 profile image
Clauds123

Thanks everyone. Wow it’s complex! I’ll let you know what the outcome is. I wouldn’t say I’m ever anything but hypo though..

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