Do we have Graves antibodies forever, even after RAI?

[TaraJR]

I was hyper in 1987, and in my medical records one endo mentioned Graves, and one mentioned Hashimotos thyroiditis. There's no record of any antibody tests, just high T4 and low TSH. I had carbimazole and PTU, but relapsed afterwards, so was given RAI in 1989, and have been very hypo ever since.

I really want to know what I had eg could it have actually been a Hashi's early swing to hyper, and not Graves.

So I've just had a TRAb antibody test and it was <1.1 IU/L (range: <1.75)

In recent years, my TPO are approx 48 (0-34)

and TGAb approx 55 (0-115)

My main question is: do you have the antibodies for Graves for life, even after RAI? Did I have RAI that I didn't need??

[Valarian]

There are various articles on this (search TRAb post RAI). The consensus appears to be that TRAb (also TPO and TGAb) often increases above pre-treatment levels immediately post RAI, then decreases over time, so thirty years later, it isn’t surprising that your results are within the reference range.

Most people become hypo after RAI as the treatment destroys the thyroid.

[Parsley23]

I had RAI 5 years ago, regret it really but the treatment I was getting was terrible and I just couldn’t continue with the Graves being so poorly controlled.

Anyhoo recently had a baby and my endocrinologist had me tested throughout pregnancy for Graves antibodies because they can cross to the foetus, and they were still there at higher levels than normal. She said they could still flare following stress etc even after RAI.

[TaraJR in reply to Parsley23]

Thanks Parsley23 . I'm sorry you've had a rough time. There are so many people suffering, or who have suffered, too much.

That's interesting info - I'd like to ask an endo if it's still possible after many years (I had my RAI 30 years ago!) I won't see him for a few months, but I'll try to remember to ask him.

I hope all goes well with your new baby. Make the most of it all - the time flies by, and they're only babies for a short time. I know lots of people say this, but it's TRUE! If you have any thyroid queries, make sure you ask on HU for support.

[LiliAmsterdam in reply to Parsley23]

May I ask why you regret the RAI therapy? It is actually saver to not have a functioning thyroid when you are pregnant.

[Parsley23 in reply to LiliAmsterdam]

Yes, I ended up getting the RAI because my care controlling the Graves was abysmal and I figured for the future it would be better regarding pregnancy. I still ended up having a huge secondary haemorrhage but nobody can tell me why that was so maybe it was a better outcome than it might have been! I still had to have Graves antibodies and foetal growth monitored through pregnancy as my current endocrinologist informed me that they don’t go away just because you have RAI, which wasn’t explained to me at the time I chose to have it done.

I regret it because now I’ve moved to a new area, my endocrinologists are great and I realise that with proper care controlling an overactive thyroid would have been fine and efforts to reset it might have worked (it was never properly monitored so I never really had a chance at that). I felt so hopeless and scared and alone and like RAI was my only option at the time but really it wasn’t, and in the UK it’s not the default treatment as I know it is elsewhere. It just seems very drastic now looking back, and it sucks to have to take medication every day for forever. I’ve also started to develop other autoimmune symptoms in the years since that are associated with low thyroid function even though my levels are normal, and I occasionally worry about cancer from the RAI even though I know it’s a negligible risk. If it was that low though, they wouldn’t make you sign all the forms right?🤣

Also I know it shouldn’t matter but the weight gain does really bother me, I now naturally seem to settle about 2 stone heavier than I did before all of the thyroid stuff, and I’m like 4 stone heavier than I was at the peak of my Graves (felt like crap but damn it I looked fabulous haha). I have to work out like an absolute beast to control it and since having my daughter that just isn’t possible anymore to the level I’d like and I guess metabolism slows as we age too. Obviously I’d rather be a bit fat and actually healthy than very thin and feeling like crap but hey, societal beauty standards are stupid right. I just thank god I’m very tall because on my frame the big fluctuations in weight don’t have as extreme of an effect on my appearance. It must be even more of a pain for people on the shorter side!

[LiliAmsterdam in reply to Parsley23]

No you are connecting the wrong dots. Low acting thyroid won't be causing other auto-immune diseases. Once you have one auto-immune disease you are more likely to develop another. The fault lies in your immune system not your thyroid function.

[LiliAmsterdam in reply to Parsley23]

It really sucks that you didn't feel like you had other options! If you get a Graves relapse during pregnancy however, you cannot take high dosis of the anti thyroid drugs . I am on the maximum dose of strumazol/methamizol and I could never have a healthy baby on that dose (its highly teratogenic at that dose). So I don't have any options. It is actually easier to supplement levo during pregnancy then to control out of control Graves. I have a Graves disease heavy family history.

Funny enough I actually gained weight with my Graves! I am losing weight now on the gigantic dose of strumazol/methamizol. Mostly because I finally realise that eating isn't supplementing my energy so I have just cut my calory intake.

[Parsley23 in reply to LiliAmsterdam]

Yeah I was always on crazy high doses of carbinazole (I’m in the uk, that’s the preferred drug here) and that was a major contributor to the decision for RAI. There’s an alternative drug they can switch you to in pregnancy I believe, I can’t remember the name off the top of my head, but I imagine it’s still far from ideal at high doses. I guess you’ll always wonder what might have been when things seem less than ideal, but I did have a relatively stress free pregnancy (until the birth anyway 🤣) and my daughter is fine so perhaps I shouldn’t complain. I hope it all works out for you whatever you decide to do!

[LiliAmsterdam in reply to Parsley23]

Yeah carmibazole is the prodrug to methamizole. What is a crazy dose then? I am on the maximum allowed dose. The next step would’ve been prednisone. But I am not up for that.

[Parsley23 in reply to LiliAmsterdam]

It was usually 40mg, I was on the block/replace method for most of the time so it was obviously a high dose of the carbimazole and then a high dose of levothyroxine to get to normal rather than titration to try and hit the right mark. Always much preferred the block replace because they were really not monitoring me enough to get titration right, always got left for ages and then ended up on beta blockers until they sorted it out. Propylthyouracil is the drug I believe they would switch to in the U.K. during pregnancy, had to google the name or it would annoy me😄. Eep steroids always sound so stressful, I don’t blame you for avoiding! Do you have eye involvement then? I was always glad to avoid that. Still have really dry eyes though even years after the RAI that hasn’t gone away.

[LiliAmsterdam in reply to Parsley23]

40mg is quite a normal dose. The maximum dose of Carbimazole is 150mg (as it’s a prodrug it works slightly differently so the dosages are different)

We can also have Carbimazole but my endocrinologist prefers Thiamazol. I’m on the maximum dose 90mg (technically the drug I’m on os more equivalent to the American drug but still different) so it’s not a prodrug like carmibazole. I’m supposed to have replacement too but my own T4 and T3 is still too high for that. My thyroid has been growing alongside the block therapy even after dosage increases. I started on 30mg which is the more normal dose. It was slowly increased but was never fully blocking my thyroid.

[Parsley23 in reply to LiliAmsterdam]

Well I hope it all gets sorted for you one day, I’ll keep my fingers crossed!

[LiliAmsterdam]

Hmm not really. They reduce over time if your thyroid has been completely obliterated. BUT if you get pregnant or sick the antibodies can increase again. The antibodies are created by your immune system and unfortunately our immune system has immunological memory cells (so unfortunately more antibodies will be produced during times of stress, sickness of pregnancy)