Please can I ask if anyone knows where you can get TSH blocking antibodies tested privately?
I have always assumed that I had Hashimotos, but have an atrophic thyroid and negative thyroglobulin and TPO antibodies so am curious.
This forum is an amazing resource of information and support. I would be very grateful for any pointers/ info!
Thanks
I am interested to see replies to this as I think I have blocking TRAb dominating at the moment. My understanding is that there is no readily available test. The TRAb test measures both stimulating and blocking AB and doesn't distinguish between them. The only way I can see to gauge blocking AB would be a low result from TSI test against a low TSH characteristic of my Graves. However TSI is seldom measured here in Scotland. Tania Smith writes about Atrophic Thyroid in Thyroid Patients Canada.
Thank you for this….. it seems that it is an emerging area.
I think it so that you can’t get a test for blocking one’s alone, but there is a test for stimulating ones with medichecks. I have auto immune atropic thyroiditis and was told on here by a knowledgable member that this test would still tell me if there was antibody activity again. I have got signs of TED and pretibial myxodema again 11 years since I was diagnosed and my ultrasound scan showed a tiny thyroid unlikely to have any function. It is very unusual but it can happen. They can still attack the tissue behind the eyes and cause the problems in the shins. They can’t cause any more grief to the thyroid though, well not to my crisp of a thing as the endo called it.
Link to the test:
medichecks.com/products/tsh...
That is really helpful…. I think I will do the test to see if I can get a clearer idea. I know it doesn’t actually make any difference to treatment but really want to understand what is happening. So interesting that it can still cause damage despite such a small thyroid. Thanks!
The short answer to your question is that you can’t - well not in this country anyway. I did a lot of research into this a year or so ago with the help of a Lab and found that the only place we found with a commercially available test was in the USA. The Lab I was talking to could have arranged to send my blood but the cost was prohibitive!
TSH-binding inhibitor immunoglobulin or TBII is an older version or TRab (TSH receptor antibodies) but both tests measures - blocking AND neural AND stimulating. ie ALL the antibodies affecting the TSH.
Usually TRab is tested if Graves hyper is suspected but many hospital now favour TSI (Thyroid-Stimulating Immunoglobulin) as a marker for Graves, but TRab is often said to be a better biomarker for TED thyroid eye disease (most doctors say this only occurs with Graves).
There a confusing overlap with antibodies as it quite possible someone who is obviously hypothyroid (with only a residual level of functioning thyroid) has stimulating antibodies but without a working thyroid they would never have hyper levels & therefore would never have full antibody testing.
It’s interesting to know the cause of the issue & exactly what antibodies are influencing what aspect but as antibodies fluctuate so greatly and treatment is based on what thyroid levels need replacing - having the answer of blocking antibody level might not help guide to better treatment.
But it might have helped me when trying to explain my hypo symptoms to my GP who wanted to lower the Levo part of my B&R from 100 to 75 mcg. recently because TSH was below range . He couldn't understand the concept of Hypo Graves. Luckily he contacted Endocrinology who did.
Did your endocrinologist test TRAb & TSI and treat based on antibody results or were they going by FT4 & FT3.
Only TRAb was tested not TSI. I have updated my bio. It is a grey area who oversees me. Last saw Endo 4 years ago. GP tests full thyroid panel twice a year. Post covid it seems I am now called annually to see practice nurse. I am confident enough now to do my own thing adjusting to keep fT3 half way through range where I feel well. I have slowly become more and more hypo over the years requiring my Levo to be increased which I think can only be explained by a shift from stimulating to blocking TRAb. I have not had antibodies checked recently. Depending on thyroid test results my plan is to reduce my 5mg.Carbimazole over the next couple of years and eventually stop. Before stopping I would ask to have TRAb tested . Like tattybogle it gives me a headache trying to understand what is going on with those antibodies. I try to keep things simple focusing on keeping my fT3 where I know it needs to be. I would like to know if anyone else has had a similar hypo journey with their Graves and what the final outcome was - did they achieve a lasting remission ?
Sorry Hedgeree - I seem to have hijacked your post 🤔
Hi PurpleNails,
The test that Medichecks do; the TSH receptor stimulating antibodies test is this a different test again?
I find antibodies a confusing area!
medichecks.com/products/tsh...
The test is for “TSH receptor antibodies” (presumably all of them) but for some reason they emphasised “stimulating” as this if the element which causes the hyper in Graves.
Unless medichecks are testing TSI (stimulating only) either the description or test name isn’t accurate.
I know members who have ordered this test & not had clear results - having no antibodies is normal but a small number healthy as “background noise” it when it reaches a certain level it’s considered to signify autoimmune & therefore antibodies ranges are always (0 - X ) or (< X) & above the limit is positive.
They have sent results back with a higher starting range which mean 0 to lower reference is also abnormal & that’s not accurate.
It’s an expensive test & has has be venous draw so additional fee.
£100 + blood draw c £40
I think it tests all the antibodies but just calls it stimulating as mentioned in the thread. tattybogle has a good handle on all that side of it which is murky waters for my mind not her clear crystal stream
lol you should be here to see "my chrystal clear system' ... imagine a pissed juggler , for a brief moment in time it looked like i was juggling all the balls ... i've dropped them all over floor now and have given myself a headache 
So it’s all an illusion! I’m shocked 🤣🤣🤣 get this tat I couldn’t even get more than two balls in the air let along juggle them - just catching them would be an achievement! And that’s sober 😁
🤣
Thanks… I find it very confusing! I have been hypothyroid for over 30 years and am only just reading about and trying to understand all this. That is very helpful.
most doctors are wrong it (TED) occurs with AAT at the same rate as Graves, sometimes in Hashimotos and even in people who are euthyroid. A range of antibodies are involved in all the autoimmune thyroid disorders which are not mutually exclusive to any of them. Fuzzy edges I say. I’d guess most medics couldn’t even name the antibodies involved but perhaps I’m too cynical, after my experience.
I know I have hyper but not autoimmune. I’m routinely dismissed over my eye issues can’t get help anywhere.
it’s a bad scene isnt it. I just hope mine never gets really bad and just waxes and wanes, but a diagnosis would mean you got some support it’s not a very nice condition to have to deal with mentally. A lot of my ancestors on my mother’s side went blind so you always have that in the back of your mind, some had glaucoma but theres also thyroid disorder lurking in the shadows who knows if some of it wasn’t down to TED. I’m lucky it’s just low level.
as other replies~ as far as i know, you can't (unless you have friend who works in thyroid research)
The presence of blocking TRab has to be deduced from a positive TRab ( which shows all 3 kinds~ stimulating g, blocking .and neutral( nueral ?) then compare those findings to the presentation/ symptoms and TSH/ fT4/ fT3 levels.
....comparing a strong positive TRab result to a 'relatively' low TSI (which only shows the stimulating ones) might also give you a clue to their existence, but i have no idea how you work out what 'relatively' is)
If 'blocking' TRab are actively dominating in an UNMEDICATED patient , then you would expect a positive TRab result , with a hypothyroid presentation, with a high TSH (possibly 'unusually' high), and low T4/T3 .
The blocking TRab stop the TSH getting to the TSH receptors on the thyroid ~ so no stimulation (therefore low T4/T3) and because the hypothalamus / pituitary detect continuous low T4/T3 levels, they will chuck out increasingly desperate amounts of TSH.. hence the potential for unusual high TSH levels.
(and i think ? there might be involvement from TSH receptors/ sensors? in the hypothamus / pituitary too ? .. which would mean the hypothamus / pituitary are unawase of how high theTSH has got because they to may be blocked ....and this may have some connection to the TSH going higher than expected.. but i could have imagined/ misremembered that bit )
I am struggling to get my head round how blocking TRab would present in someone ALREADY taking thyroid hormone though . .. the TSH wouldn't rise unusually high (because T4 was being replaced exogenously ) .. the thyroid wouldn't be being asked to make any extra T4 because TSH wouldn't be high, and you wouldn't have the benefit of a high TSH boosting the thyroid to increase it's ratio of T3:T4 production (becasue the TSH 'can't get in' becasue the blocking TRab are blocking the TSH receptors on the thyroid .. and presumably blocking any TSH receptors anywhere else in the body) .
FlUCTUATING amounts of stimulating vs blocking TRab over time ,would lead to fluctuating TSH/ fT4/ fT3 levels , with potential for apparent 'remission' (euthyroid periods of not needing any thyroid hormone replacement) , and the potential to swing from hypothyroidism to actual hyperthyroidism (needing carbimazole), which is very unusual in 'normal' hypothyroidism that does not have significant involvement from stimuating TRab .
So ... now i've confused myself and everyone else , i'm going to go for a walk to confuse some seagulls instead
Go here ..... tania s. smith writes about it a lot cos she believes she has issue with blocking TRab : thyroidpatients.ca/home/sit...
Thank you tattybogle . Very comprehensive analysis which really shows how complicated it all is. The textbooks say what “should” happen in a perfect world, but our bodies haven’t read them. In the presence of blocking antibodies the TSH “should” be high ( or very high), but as you say, on treatment for hypo this will not happen. If you are diagnosed during a hypo phase the possibility of TSH blocking antibodies would be overlooked. It is unlikely that they would be tested and you are even lucky to get thyroglobulin or TPO tested!
I am coming to the conclusion that in a perfect world every new patient should have full testing done. It may not immediately affect treatment but would help the patient (and GP) understand what might be happening. Why are other auto immune diseases like rheumatoid arthritis treated and researched so much better?
Also, if the level and effect of TSH can be affected so severely by the antibodies, how on earth can it be considered to be the one and only important test?
I thought I had read somewhere that if blocking AB's are dominating ,TSH is low which is what is happening with me. It is beyond my level of understanding but possibly to do with us having receptor sites for TSH in our Pituitary. I read this paper for clues but had to give up. If you are up for the challenge can you read it to see if it adds anything to our understanding 😆 ncbi.nlm.nih.gov/pmc/articl...
it only makes a brief mention of TRab here " It has also been suggested that TSHR autoantibodies can suppress intrapituitary TSH levels independent of circulating thyroid hormone levels, suggesting that these receptors are functional (19).
But there they are referring to the action of mostly stimulating TRab ~ taken from graves patients.. (where they must be 'mostly stimulating' TRab , otherwise they wouldn't be 'graves patients' . if they were 'mostly blocking' they would be hypothyroid patients)
19 is this : academic.oup.com/jcem/artic... Suppression of Serum TSH by Graves’ Ig: Evidence for a Functional Pituitary TSH Receptor.
Which is a paper explaining how stimulating TRab have a continuing suppressive effect on TSH, (via TSH receptors in the pituitary that influence an ultrashort feedback loop which limit's TSH level ) and how this supressive effect is unrelated to high levels of T4/T3 .. thus explaining the delay for TSH to rise even after T4/T3 levels have been reduced by carbimazole.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
image below pinched from one of tania's thyroid patients canada articles ..( can't remember which one )
Stimualting TRab are the agonist antibody.. they act on the receptor just like TSH does, (they mimic TSH) ~and cause the thyroid to produce more T4/T
and ~ via TSH receptors in the pituitary , they activate the ultrashort feedback loop in pituitary (which i think means TSH itself actually limits/ lowers more TSH production ), so they can also cause the TSH to remain low for a long while even after T4/ T3 are lowered with carbimazole)
Blocking TRab are the antagonist antibodies .. they block real TSH getting to the TSH receptors... and as far as i know (at the moment, lol) they don't have any effect on the TSH receptors, they just plug them up to stop TSH getting in and having it's effect. So the thyroid doesn't get stimulated to make more T4/T3 no matter how high the TSH goes .( so you become hypothyroid low T4/T3~ unless you are taking thyroid hormone replacement )
and ~ because they also block the TSH receptors in the pituitary , the real TSH can't get in there to activate the ultrashort feedback loop.. and so there is no lowering/limiting effect on TSH.... so as far as i can get my head round it ....blocking antibodies do not cause low TSH.
However .. "getting my head round it" is a very fluid concept , one minute i see it all clearly, the next it is all swirling round again.. so don't take my word for any of this
Thank you. I am amazed how your brain can logically work through this. It is now wine o'clock for me so I will wait till tomorrow to try and get a handle on it all. I appreciate your efforts .Namaste
Great link for info. Thanks 😎
really interesting. Boy did I have some swings from hyper to hypo with AAT
Today on the Elaine Moore Forum, she states that TSAb/Neutral/TBAb ALL cause low TSH - unfortunately she doesn't explain why. I reread Tania Smith noting that we can have Stimulating and Blocking at the same time causing a tug of war between SOME AB's that block some TSH Receptors while other AB's stimulate OTHER TSH Receptors. I think TBAb is causing my low TSH at the moment but after all my reading today I still can't come up with a watertight explanation....................TBAb can affect some of the people all of the time and all of the people some of the time but not all of the people all of the time 😂😂😂
That is really interesting…. Where do I find the forum? I would love to read more.
elaine-moore.com/Forum/Acti... need to join for full access
Found this ....relatively easy to understand ~ bit of a slog to get through as it repeats itself a lot, presumably translated from japanese ~ but worth getting to the end. ncbi.nlm.nih.gov/pmc/articl...
"Changes of TSH-Stimulation Blocking Antibody (TSBAb) and Thyroid Stimulating Antibody (TSAb) Over 10 Years in 34 TSBAb-Positive Patients with Hypothyroidism and in 98 TSAb-Positive Graves' Patients with Hyperthyroidism: Reevaluation of TSBAb and TSAb in TSH-Receptor-Antibody (TRAb)-Positive Patients"
Nobuyuki Takasu * and Mina Matsushita (Journal of Thyroid Research 2012)
~ Gives some technical information about how they measured blocking TRab in japan (says they couldn't get a commercial lab kit to measure blocking TRab there in2012 ) ,
~ Says several times throughout the paper that:
Blocking TRab (TSBab) = high TSH.
Stimulating TRab (TSAb) = low TSH.
~ Gives individual results for 2 patients which showing how high their TSH went when blocking antibodies were dominating their picture (before their hypothyroidism was treated with levo, then TSH lowered as expected due to T4 replacement ) .
Figure 2 ~ ( hypo patient due to blocking TRab dominating , who later switched to Hyper, due to stimulating TRab dominating).
...... See the TSH level at the beginning (2b) ~ before levo is started ... Blocking TRab are dominant and TSH is 400 / 550 , it goes down to 300 on first starting levo , then lowers further (also due to levo )
Figure 4 ~ ( hyper patient due to stimulating TRab dominating , who later switched to hypo, due to blocking TRab dominating).
......See the TSH level rise after the blocking TRab start to dominate (4b) ... TSH gets up to approx 95 before levo is started.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
the earlier (2001) study mentioned in the above paper , done by the same person (Takasu) .
(haven't read it , but i think they were comparing their 2 different methods for measuring blocking TRab).
pubmed.ncbi.nlm.nih.gov/113...
TSBAb (TSH-stimulation blocking antibody) and TSAb (thyroid stimulating antibody) in TSBAb-positive patients with hypothyroidism and Graves' patients with hyperthyroidism
N Takasu 1, K Yamashiro, Y Ochi, Y Sato, A Nagata, I Komiya, H Yoshimura
stumbled upon this ... no use to us but ..... a test kit for specifically testing blocking TRab (research test only ) from Hachioji lab (Tokyo) ...... test-guide-en.srl.info/hach...
You are truly amazing….. how on earth do you find all this? Thank you so much, I will read it all and try to get my head around it.
Googled "TSBab TSH "
I have now looked at my results over the last few years with fresh eyes. On B&R, Carbimazole dose between 5 and 10mg. didn't appear to make a difference. Levothyroxine part however needed increasing to keep fT3 half way in range. On 50mcg. Levo TSH slowly rose 0.09/0.17/0.27/0.5. Levo increased to 75mcg. TSH 0.07/0.05/0.45/0.29/0.38/1,18. Levo increased to100mcg. TSH 0.06. So this would fit in with the paper you found saying TBAb cause TSH to increase. I was " masking " this increase by increasing my Levo. I am so grateful for your efforts and persistance. Wouldn't have surprised me if you had read the paper in the original Japanese. 😂😂
Good luck trying to get your head round the combination of carbimazole +Levo +Blocking TRab ! ... i tried briefly... and dropped all my juggling balls. My Japanese is not very promising , since i managed to fail French (CSE!)
Re blocking TRab causing high TSH .. see also this : kjim.org/journal/view.php?d... The Korean Journal of Internal Medicine 1989 doi.org/10.3904/kjim.1989.4...
"Role of Blocking TSH Receptor Antibodies on the Development of Hypothyroidism and Thyroid Atrophy in Primary Myxedema"
Bo Youn Cho, M.D., Young Kee Shong, M.D., Hong Kyu Lee, M.D., Chang-Soon Koh, M.D., Hun Ki Min, M.D., In Sohn, M.D.
( see Table 3) baby born with blocking TRab (passed from mother), causing transient hypothyroidism in baby .... TSH was 200 at birth ~ when blocking TRab were still high, before levo was commenced.
Hi
I have Hashimotos and recently had a blood test for TRab as my Thyroid levels have been all over the place with heart palpitations, shaking, high blood pressure and not feeling well. My blood test was done via a private Endocrinologist. It came back negative. I was certain it would come back positive!!! Seems mine is due to Hashi flare.
I have not seen a test you can buy privately but not 100% certain. No doubt someone with more knowledge than me on here will know.
I sympathise…. This is exactly what is happening to me. I have been on the same medication for 2 years and have suddenly started feeling hot and my pulse can suddenly increase from 68 to 140 at rest for no reason. I have an atrophied thyroid gland on ultrasound so am surprised there is enough thyroid tissue left to increase my levels that much. I have bloods tomorrow and will do private TSH/T4 and T3 at the same time as I am not confident the NHS will do everything for me.
Incidentally, this all started after a sore throat in January.
Anyone else had similar issues with an atrophied gland?
Thank you all so much for your input…. Sorry for delay in replying, all family with babies here eating pizza yesterday so taking advantage of them being in bed!
make sure you also test vitamin D, folate, ferritin and B12
Could sore throat have been covid?
Thank you…. I tested for covid twice…. Both negative. I test my vitamins regularly and supplement folate and vitamin D. I will check them again but think they are OK
I would second everything in SlowDragon's reply. A sore throat was a particular symptom of recent Covid cases, and could well explain your subsequent symptoms.
I’ve definate my got some strange things going on 11 years after my diagnosis with AAT and a non functioning atrophied thyroid gland. My eyes look awful typical graves pop eye, even my friends and relatives have asked what’s a wrong with them so it has to be bad! I kept thinking I was just imagining it because my horror story with thyroid disorder made me so paranoid about my health and involved so much gaslighting too you begin to doubt your own judgement…I also have dreadful itching shins which I had towards the latter stages of my very miserable journey before diagnosis with AAT. I thought this is very odd how can this lot have returned with no thyroid? So I did some research and sure enough it can happen even decades later if the relevant antibodies gather pace. I keep hoping mine will go back into remission I think it is improving the itching has lessened thank god it’s been about two years of the bug eyes. It’s just a darn menace thankfully my eyesight is still ok. The opticians are not interested they just like to blame dermodex mites so I’ve given up on raising TED as a possible cause of my eye issues it’s like howling at a brick wall. Reminds me to much of when I kept asking were my multiplicity of health problems something to do with my thyroid. Why was I seeing double and having such painful dry eyes Oh of course they weren’t related to my thyroid - my backside they weren’t!
That sounds really awful…. I hope it settles soon. I feel like I am having a hyper swing ( can you even call it that when you are on medication?) which I am surprised by as my thyroid is so atrophic. Clearly not completely destroyed yet!
Did they say how atrophied? Sometimes they give a weight or volume. I got the impression mine was a hopeless case just a crisp of fibrosed junk . Maybe the antibodies (if you have any) are still interfering with the thyroid tissue that’s left, which has some function.
I worked out the volume from the reported measurements and it was 2.4 ml. This is clearly low but maybe not “low enough’”! I have no idea how much function there is left, but had assumed very little.
7 - 10ml is normal so that’s quite an atrophy.
Dr Tania Smith gave her volume I’ll try and find it to see how it compares
….ooh it’s small, very small!
“0.5 mL, a size that is found in less than 2% of autoimmune thyroid patients, according to Carle et al, 2009.”
I’d think mine must have been of a similar order because the endo did say mine was very small indeed and was highly unlikely to have any function. I don’t think I was ever given a volume or measurements but it might be in a report about the scan and it didn’t register. My TSH was 0 one week and 110 the next and I was eternally hypothyroid there on in .
It’s hard to work out if your volume would still allow some function from the Carle et al paper. If it could still get smaller it ought to be possible it’s still doing something. Mine was highly erratic towards the end yo yoing between hyper and hypo I was not on any thyroid medication I think it died completely before I got any diagnoses or meds.
wow! Sounds like a real rollercoaster. I think I have been more stable than that for many years ( although kept pretty hypo by TSH obsession!). Recently the rollercoaster has started and I feel that the infection in January was responsible.
With all the wonderful advice and information from you and everyone else on here I feel I have a way forward to investigate and hopefully explain it to my lovely GP as well as sort myself out.
Thank you!
yes I self medicate with NDT I felt awful on Levothyroxine t3 was rock bottom basement on it. Glad I switched over been on NDT for about 7 or 8 years now feel pretty well on it bar the odd niggle plus these bug eye shin itch problems
I am glad you find NDT better. Maybe this is something I should consider.
At the moment my pulse is swinging suddenly from 70 to 140 for no apparent reason. It is not pleasant as you know.
I bet your thyroid is dumping stores of thyroxine now and again and causing these vacillations. As it atrophies away it does that as it can’t hold on to it. It was a rocky experience for me I can tell you. Quite horrible. Hopefully if you’re on thyroid hormone therapy it won’t be as marked. I found NDT was my saviour I feel so much better on it. Levothyroxine left me feeling quite dreadful. Annoying as close relatives found it excellent and fast acting to ameliorate all their symptoms I knew something was wrong when I still fell felt terrible after 9 months on it and the endo was a better one where optimisation was concerned.
That would make sense! I feel pretty bad when my pulse shoots up, sometimes as high as 145 in bed at night. I have resorted to taking my Fitbit off to try to get some sleep! I am so glad you have found NDT helpful. Maybe things improve when the thyroid is completely dead?
I hope so. Perhaps it’s better to have a little still working if the atrophy can be halted but I don’t think it works like that.
I had a lot of heart pains it wasn’t very nice. They got worse on Levothyroxine e but have gone away on NDT. It also stopped the really awful depression I suffered from so in many ways I felt better than I did for decades on it. I never expected that to happen. I must have had low t3 got for a very long time whe I was younger I think I was mildly hyper all the time, hardly slept 5 hours was a lie in, had so much energy it would drive me nuts trying to dissipate it, I was exercising non stop cycling, running, swimming, aquajogging, badminton, gym it makes me exhausted just listing them ! I was thin as rake and could go days without eating and never even felt hungry I’d just forget to eat at all . I just though I was a high energy person 🙄
Hi
Just read your reply Mollyfan, that is strange as mine started late Nov/Dec last year. At first I thought I was going to get a cold as I had slightly sore throat but it never came to anything. I was negative for Covid. Everything went downhill from then. I have spent last 3 months trying to get to bottom of it all. I had ultrasound on my Thyroid a week ago which showed a very tiny Thyroid gland and the Consultant said Thyroid showed all the signs of typical Hashimoto Thyroiditis. Endo says a virus will set off attack on Thyroid and you get temporary Hyper symptoms.
I was unwell for a good 7 weeks. My thyroid levels have gone right up and then right way down. Now stable but have definitely changed. I am being monitored.
All very confusing and hard to keep up with.
Yes, this is exactly what has happened to me. I have felt unwell since a bug in mid January. A scan last week also described sun clinical/ chronic thyroiditis and I also still had reactive cervical lymph nodes. I am having my bloods done tomorrow….. I think I should have had them done much earlier. 🤦🏼♀️
I hope you feel better and your levels settle soon.
there’s this one
very true. Three members of my family had strep infections at the same time so I suspect it was probably bacterial.
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