Graves disease sufferers - can carbimazole make you feel like sh*t?!

[MrsMiniversCharlady]

Recently diagnosed as hyperthyroid which was a bit of a surprise as I felt absolutely great! No bothersome symptoms, sleeping well, heaps of energy etc.

I started carbimazole about a week ago and now I feel pants! Really, really tired - falling asleep on the sofa, struggling to stay awake driving home from work, exhausted at work. I also have had a headache for a couple of days that I can't seem to shift and I feel achey. Basically I feel as though I'm about to come down with something, but nothing has materialised!

Could this be the carbimazole? I go back to the endo in 10 days, but so far I'm wishing I'd never been to the doctor in the first place If it's the carbimazole will I start to feel better at the some point?! Today's my day off from work and I'm dreading going back because I feel so awfully tired.

When she saw the Endocrinologist in September 2015, he increased the Carbimazole immediately to 20mg per day because of how ill she was, and then he spoke to the Consultant Endocrinologist whom put her dose up to 80mg Carbimazole per day (40mg twice a day).

This statement was incorrect, it should have said the Endocrinologist increased her Carbimazole dose to 40mg per day (20mg twice per day)

I was diagnosed with Graves’ disease 4 years ago and had no symptoms what so ever so I declined medication. I had a bout of vertigo in May 2019 which lasted for 4 months and my GP felt it was caused by hyperthyroidism and put me on carbizimole, 20mg. In December my endocrinologist put me up to 30mg and I have never felt so unwell. I have gained 2.5 stone and just about manage to stay awake in work. Once home I have no energy to do a thing and am usually asleep by 7.30pm! I cant even walk more than 20 mins without my muscles being in excruciating burning pain. I only have to bend and I’m in pain. My hair has been falling out by handfuls and I cry all the time. My gp said I am now suffering extreme hypothyroid symptoms and over 2 weeks dropped my dose to 10mg. Getting an endro appointment is virtually impossible. I am dis to see him on 26 March but frankly I’ve had enough of feeling so unwell so made the decision 2 weeks ago to come off carbizimole all together. I had been on it for 9 months of hell. I am still tired but as extreme as it was. My hair is no longer coming out but I cannot lose weight and still ache too much to work out. I hope this will get better as it’s only been 2 weeks.
I feel like it’s too easy to put us on medication without really treating the root cause. I am just another middle aged woman with thyroid issues to the doctors. I am a fun, bubbly, energetic, mum, wife and friend. I was none of these things taking carbizimole. If I had continued to gain weight I would have ended up diabetic. Quality of life must be more important. Rant over - not sure what the future holds for me but I refuse to take that poison again!