Relapsed after 2.5 years in remission – feeling anxious about going through it all again (UK)
Hi everyone,
I was diagnosed with Graves' disease in 2022 and have just relapsed after around 2.5 years in remission.
My first episode was severe — my resting heart rate reached around 170 and I felt horrendous. I was eventually started on 40 mg carbimazole and beta blockers, then gradually tapered down to 5 mg over about 20 months before coming off treatment in early 2024, although I've remained on a low dose beta blocker ever since.
I've been monitoring my TSH since then, and it had been gradually falling but remained in range. After a particularly stressful period recently, it suddenly became suppressed. My bloods last week showed FT4 around 23 (only slightly above range) and FT3 around 6 (still in range), so thankfully I'm nowhere near as hyperthyroid as I was initially.
Yesterday my GP sent me to the hospital for an ECG and repeat bloods. The ECG was fine and I've been given 5 mg carbimazole to take while I wait for endocrinology. I'm starting it now, but I'm a little worried because 5 mg was the maintenance dose I was on towards the end of my previous treatment, rather than the dose that brought my levels down initially. I'm waiting for yesterday's results to come through tonight.
I think what's making me anxious is remembering how quickly things deteriorated last time. Going from feeling relatively normal to a resting HR of 170 and feeling incredibly unwell within a couple of weeks was terrifying, and I'm scared of going through that again while waiting for endocrinology. I also have three important job interviews this week after months of (unexpected) employment, so the timing couldn't be worse.
My previous endocrinologist recommended radioactive iodine if I relapsed. I'm honestly not very keen on that and would much rather explore going back onto carbimazole, particularly as it worked brilliantly for me previously and I had no side effects. Obviously I'll discuss all the options properly with endocrinology.
I'd really love to hear from anyone who's been through a Graves' relapse:
- Did you go back onto carbimazole rather than having RAI or surgery?
- Were you given a low dose initially, such as 5 mg?
- How quickly did your levels change after relapsing?
- Was your second episode different from your first?
- And did anyone else have that horrible "oh God, I have to go through all of this again" feeling when they relapsed?
I'm also curious about stress. I've had a very stressful period recently and wonder how much others felt this contributed to their relapse.