TSI antibodies

[Kari55]

Hello, I would like my husband to have his TSI antibodies levels checked. His doctor won’t refer him and I can’t see such tests on Medichecks or Blue Horizon. Any suggestions please?

[SeasideSusie Remembering]

Medichecks do TRAb test (Thyroid stimulating hormone receptor antibody) which is for Graves disease

medichecks.com/thyroid-func...

Not sure if they TSI but you could enquire.

[Kari55 in reply to SeasideSusie]

Thank you!

[shaws Administrator]

This is a link I found. I'd never heard of TSI before but this is an explanation:-

healthline.com/health/tsi

[asiatic in reply to shaws]

The article says "Your doctor will typically order a TSI test if you are showing signs of hyperthyroidism and they suspect that you might have Graves’ disease. "

It has been my experience that doctors very rarely ask for this test. If you are lucky they will measure Trab. However this doesn't tell you which antibodies are dominating - stimulating (TSI ) ,neutral or blocking. My Trab are still high after 4 years on ATM but it is possible I could be in remission with blocking antibodies dominating. Without a TSI test we just don't know. I wonder why docs don't ask for it. Is it cost ?

[Kari55 in reply to asiatic]

He had TRAb test 1,5 years ago privately and diagnosed with Graves. He is now under the NHS endo and he won’t do any tests for antibodies.

[asiatic in reply to Kari55]

I was told by endo they would only measure antibodies if I was pregnant. I am 73 so no chance then and no chance for your husband either !

In the absence of having TSI measured and because I feel well I have decided to stay on low dose block and replace as there is evidence the longer you stay on meds the more chance you have of remission. In a couple of years I plan to titrate off meds to see what happens.

[Kari55 in reply to asiatic]

I guess he will stay on his low dose for a while. We are moving house and having twins this autumn so he needs to watch his thyroid even more. Maybe next year when things settle down, he will be able to try and come off them.

[Kari55 in reply to shaws]

Thanks. I haven’t heard of these either. It was Elaine Moore who suggested to have them checked to see if my husband achieved remission. He was diagnosed with Graves through TRAb test.

[ling]

Why TSI?

TRAb was the one previously tested?

[Kari55 in reply to ling]

Hi ling, yes he was diagnosed with TRAb test. I have emailed Elaine Moore as my husband has been on meds for 1,5 years and has very good levels and she suggested to check TSI to see if he achieved remission. She didn’t mention TRAb.

[ling in reply to Kari55]

Would you ask her if TRAb will do as well?

Your previous post made mention of antibodies level having come down by a lot - is that TRAb?

Given your husband's previous experience bordering on thyroid storm and the pseudo heart attack, trying for remission, ie. stopping carbimazole, if going ahead, should be very carefully considered and handled.

Please note also that coming off carbimazole when antibodies level is positive, can cause eye problems to significantly worsen or trigger a relapse.

[Kari55 in reply to ling]

No, it wasn’t TRAb. Here are his latest results:

TSH - 2.3 mIU/l (0.27-4.2)

FT4 - 17.9 pmol/l (12-22)

FT3 - 3.54 pmol/l (3.1-6.8)

Thyroglobulin antibodies - 12.1 kU/l < 115

Thyroid Peroxidase antibodies - 10.1 kU/l < 34

Elaine explained that measuring these antibodies only indicates the level of thyroid inflammation which we didn’t realise. I don’t think he will be able to do TSI antibodies as I think even privately he would need to be referred. As there is a TRAb test on Medichecks, he could do this one but I will ask Elaine if it gives us the same information as TSI.

Either way, I think he will remain on a low dose until next year as there are too many things going on in our lives now. Apparently he doesn’t have signs of thyroid eye disease but he had been struggling with dryness for the past few years. Also, after his thyroid has gone off last year, he developed a posterior cataract which could have been triggered by steroid eye drops given by his ophthalmologist but since he was only taking them for few weeks, we cannot be sure what actually has caused that. He had his cataract op 4 weeks ago. Due to that I think his only option is thyroidectomy but we would need to revisit this option next year.

[ling in reply to Kari55]

Thank you. Lots of information there. Will read it again.

But am confused. If neither TRAb nor TSI were tested, how was the Graves diagnosis made?

What were the initial levels of TG and TPO antibodies? These are antibodies for Hashimoto's, though TPO could mean either Graves or Hashimoto's, and a positive TRAb or TSI test would confirm if it's Graves ...

[Kari55 in reply to ling]

Sorry, when his thyroid flared up he had TRAb tested and confirmed Graves (January 2018). As no doctor would test the antibodies again, he has been doing Medichecks tests himself. The Medichecks test however only Thyroglobulin antibodies and Thyroid Peroxidase antibodies which don’t really tell us much about Graves. There is a separate test for TRAb on Medichecks so if Elaine says it would be useful to do instead of TSI, he would have it done.

[ling in reply to Kari55]

Just to clarify - which was the high antibodies that had come down?

[Kari55 in reply to ling]

Definitely Thyroglobulin antibodies and TPO antibodies. They were tested also in January and he had them tested again in February and now in August (recent results above). His TRAb have not been tested since January 2018.

[ling in reply to Kari55]

So TG and TPO antibodies were positive but have since come down to normal levels.

As earlier mentioned, TG and TPO antibodies are markers for Hashimoto's.

It is possible to have both Graves and Hashimoto’s.

Having previously tested positive for both TPO and TG antibodies, means your husband has risk of developing Hashimoto's.

Re autumn. Take care with the house moving and twins coming. These sorts of "big" life events happening at the same time, can make for HUGE stress and trigger a relapse.

Congratulations re your twins : )

[Kari55 in reply to ling]

Yes, I suppose he can develop Hashimoto too. He was told that TPO tends to be higher at people with Graves.

I’m getting really scared of our big events that are coming our way. It’s exciting but I’m worried how we will both cope and in particular how he is going to cope with being sleep deprived which will put more pressure on me to look after twins. The good thing is that my mum is coming over and will stay for 3 months. Thank you for your kind words 🌸

[ling in reply to Kari55]

If at all possible, you should separate the house moving from the birth. It would be best for your husband and you can stress less during this important pre-birth period and focus on taking good care of yourself.

What was the steroid eye drops for?

(Please let me know if I should stop bothering you)

[Kari55 in reply to ling]

Yes, I’m going to chase the solicitors like crazy this week so they set the date of exchange soon. Hopefully it all works out ok.

His ophthalmologist thought my husband had some inflammation in his eyes and prescribe him prednisolone drops for few weeks which brought the inflammation down. But that wasn’t the end of his eye problems and he started complaining about his vision. It took a few visits for him to be finally diagnosed with a cataract.

[ling in reply to Kari55]

Yes do that.

My Graves was pushed into full blown after a period of severe stress nursing my father in the hospital.

What were the eye inflammation symptoms?

[Kari55 in reply to ling]

It was dryness and grittiness.

[ling in reply to Kari55]

That is one symptom of thyroid eye disease.

All the best.

[Kari55 in reply to ling]

Yes but his ophthalmologist still wasn’t convinced that he has got TED. His eyes are not bulging. We just stopped trusting anyone especially that his ophthalmologist is well known and recommended on this forum many times.

[pennyannie]

Hello Kari

I think one of the biggest problems we have here is that the NHS do not bother about the antibodies. The NHS can't, or doesn't know, how to control the auto immune aspect of thyroid disease so whether it's Hashimoto's or Graves the treatment is the same.

With Hashimoto's the disease eventually destroys the thyroid gland all by itself and with Graves the NHS destroy the thyroid gland for you. The NHS "solve the problem " by rendering the patient at the other extreme of the condition, hypothyroidism, and requiring thyroid hormone replacement for life.

The NHS give a 15-18 month window on ATD to attempt to bring the thyroid back into range, but do they ever check the antibody levels when adjusting ATD ? Is there any monitoring of the antibodies as to when is the appropriate time to try for remission ?

It's pointless taking people off ATD if their antibodies are high and out of range -

I would imagine it's also pointless giving RAI when antibodies are high and active -

From memory I was never told about antibodies or anything I could do to help myself -

I don't think the knowledge is there - I was earmarked for RAI at 56 and was told this at my very first hospital appointment - here was no discussion on anything - I was over the hill and not worth the investment of any time or money - I knew nothing and was in a state of shock and simply trusted that the doctor had my best interests at heart - I was fine on the Carbimazole and if I had my time again, I would want to say on ATD until such time as it wasn't an option and not just because " my time was up " - sorry, rant over :

I am now with Graves Disease, post RAI, and with thyroid eye disease and hypothyroidism, and self medicating as I am unable to access the full spectrum of thyroid hormone replacement on the NHS.

[Kari55 in reply to pennyannie]

You are right, there is no knowledge about the antibodies on the NHS but also privately my husband was told there is no point to test antibodies as they would always be there. If we didn’t read about it ourselves, we would have never known what autoimmune illness is.

He is constantly worried about having a heart attack if his thyroid flares up though so perhaps with thyroidectomy he would removed this risk. Not sure however what impact on heart hypothyroidism has.

I’m sorry you had no help and struggling with this illness but at least you took it in your own hands now.

[pennyannie in reply to Kari55]

Yes, I see the predicament and the added stress isn't good for either of you.

Well leave the RAI in the box, and if it is a thyroidectomy, please try and ensure that your husband has an endocrinologist who acknowledges that both T3 and T4 need to be on his prescription for if, and probably when, T4 - Levothyroxine isn't " doing it " for him. The thyroid may only give you about 10 T3 a day, but it's mighty powerful and without full thyroid hormone replacement, the patient has been down regulated by approximately 20 % of their overall well being.

[Greekchick in reply to Kari55]

Hi Kari,

The antibodies will always be there but it is how many you have and how they change with treatment. You should know what they are before any procedure. I am 6 months TT with Graves and just had a full antibody panel. I have trace levels of Tg, lowest level in range of TPO (which also picks up Graves, which I have), and trace levels of TRAb antibodies (Graves). My antibodies for TRAb were very high before my procedure.

If it were me, I would get my husband tested (Medichecks) so you will know before and after any procedure.

Wishing you all the best.

[Kari55]

I’ve received this message from Elaine Moore in case someone is following this post:

If TRAb is low, like below the range, then this would confirm remission. However, if TRAb is elevated, it could be from either blocking or stimulating TSH receptor antibodies. Most of us with Graves' continue to have some TSI and blocking antibodies for some time even after remission so the TRAb result, when high, can be misleading.