Hi, so I'm somewhat reposting but also rephrasing. I respond to others on here but rarely post. I have had graves for 12 years and been in a flare up relapse for the last 3.5 years. For 2 of those years I have been keeping it in control with very low dose carbimazole. Then this year something changed.
In about Feb/March I started getting more cold and struggling to lose weight. I didn't have time to do anything about it so waited til April. When I got a blood test my ft4 was okay at 15 but my ft3 had dropped to 3.4 and for the first time in over 3 years my tsh was increasing and within normal range at 0.5.
Considering the mildly hypo style symptoms i decided to titrate carbimazole and agreed with my doc and Elaine Moore to drop to 1.25mg every day. 2 months later the hypo symptoms continued. As it got warmer outside I noticed that I couldn't feel the heat. I wasn't cold per say but others would comment on how hot it was and I had no idea, other times I'd be layering up as others were stripping down. I continued to struggle to lose of keep my weight down. Then about 3 weeks ago I started getting these really bad days. It wouldn't be everyday but when it hit I would be totally, totally exhausted and slightly dizzy/feeling unbalanced. There would be a horrendous brain fog and I would often feel very angry/low. It was so bad that I had to leave work more than once and would have to sleep for the day.
I got my bloods done and this time ft4 was borderline and tsh had jumped up but they didn't do the ft3.
Now I'm getting even more annoyng symptoms - my hair has started falling out again, it did this when I went hyper but not in a long time and my nails are peeling on the edges. The days of complete exhaustion are continuing and unpredictable.
Has anyone titrating off carbimazole had this? I am off it all together now but am wondering how long it will take to come up enough for the symptoms to stop. It is driving me mad.