Immune system post-TT or RAI?

[Arrigo]

If you 'resolved' Graves with TT or RAI some time ago - do you feel like your immune system calmed down after? Or do you feel it got worse? In theory thyroid antibodies should decrease after thyroid removal, but I wonder if an immune system messed up enough to attack one organ might just pick a different organ to mess with once the thyroid is gone? (And i put 'resolved' in quotes because TT or RAI hardly seems to me like it solves a problem, you just trade one problem for another...)

[bantam12]

RAI certainly solved my problems, after 30+years of Graves and a partial thyroid op it was so good to finally be rid of all the hyper stuff. I don't believe it has messed up my immune system, I rarely catch anything despite my Vitd and most other vits on the floor 🤷‍♀️

[Arrigo in reply to bantam12]

Thanks for the reply, bantam12. So Graves for 30+ years? Were you on ATD meds all that time? My endo is pushing me to a definitive resolution of Graves after only 5 years... He says you should not be on ATDs long term for some reason. I am not sure I'm ready to do TT, so hearing that someone lived with Graves for 30 years sort of gives me hope I don't have to pull the trigger on the TT just yet... Any details you can provide would be helpful - appreciate it.

[bantam12 in reply to Arrigo]

No I was euthyroid after partial thyroid op in my teens but then Graves returned in my 40s and when meds didn't control levels I asked for RAI, best decision for me.

Why would you want to live with Graves for years, it left me with heart problems which I'm now struggling with. My sister had a TT in her teens and she's had absolutely no health problems since. If I could rewind the clock I definitely would have a TT asap.

[Arrigo in reply to bantam12]

I'm terrified to let go of an organ that controls so much in the body, to be honest. The procedure is irreversible, so if I don't do well on replacement hormones, there's nothing to do. Plus, outside of some heart palps every once in a while, I don't really feel bad... Hence the reluctance. So glad I found this forum though, very helpful reading other folks' experiences and advice!

[bantam12 in reply to Arrigo]

The vast majority do very well on replacement hormones, you can't assume because some have issues you will as well, reading negative messages on a forum doesn't give a balanced view. It's your choice at the end of the day but whichever way you go there's no guarantees it's the right way.

[greygoose]

Grave's is an autoimmune disease. And, autoimmune diseases tend to hunt in packs. So, you might well develop another, different autoimmune disease. But that will have nothing to do with the Grave's itself - it won't be because you have Grave's, you have Grave's because you are predisposed to autoimmune diseases. And, it won't have anything to do with the Grave's antibodies, either. Antibodies are very specific, they don't go around attacking body parts willy-nilly.

That said, not all people with one autoimmune disease develop another. I've had Hashi's for years, but don't have any other AI disease - and at 75, I've not go much time left to develp one, either!

[pennyannie]

Hey there again

I only have Graves Disease - no other autoimmune diseases, diagnosed at 56 in 2003.

Obviously on this forum you will be reading of those not well and looking for answers, as generally well people aren't spending their time congratulating their medical care and treatment.

However it is worth fishing out the full article that Professor Toft wrote in 2017 in his retirement year as the eminent endocrinologist who was implemental in making some of rules we now take as " gospel " and are written in the BTA and guidelines - not that I'm a fan of either :

Thyroid Hormone Replacement - a Counterblast To Guidelines : in which he states :-

" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine 1-31 or surgery in patients with Graves disease irrespective of age or number of recurrences of hyperthyroidism "

The whole article is on this website somewhere, but I'm sorry I can't do that bit for you:

The whole article is very interesting and I would think this man ( check out his career ) has seen and knows a bit more than most of us put together.

There are people on here who have stayed on AT drugs long term : it is and does get offered :

I think it all comes down to pot luck, but it's not a game of billiards but people's lives and surely you would expect to be properly informed of all the treatment options, and the possible consequences so to be allowed to make an informed decision.

[Arrigo in reply to pennyannie]

Interesting point re people who are well - that is correct, but hadn't occurred to me. Thanks for the article ref, will google it.