Reaction to carbimazole? Graves disease

[G172125]

Posting for some advice. Was admitted to hospital Three weeks ago for three days after feeling poorly for a few weeks. I was diagnosed with grave’s disease and started on 60mg of carbimazole to be taken in one dose on a morning and 40mg of propranolol three times a day. My symptoms have started to ease apart from itchiness which became really intense yesterday. Today I woke up just as itchy but with small patches of a nettle like rash. I contacted my gp and she has told me to stop the carbimazole completely but says she can’t prescribe an alternative only the specialist can do that. I don’t have an appointment until November for the specialist. Does this sound right ? I don’t want to end up in hospital again. My symptoms when I went to hospital was tachycardia, shortness of breath, hair loss, sweating, weight loss, decreased sleep, and palpitations. My free t3 levels >30.8 pmol/L , free T4 80.2 and TSH <0.01.

Yep. I was given too high a dose of carbimazole and was then allergic (same reaction as you) which meant I couldn't very have it again so then had to have a thyroidectomy. They are right to stop it and perhaps you have a chance to start again - with a lower dose and it can then increase. My dad was diagnosed with graves about 10 years after me and his was managed with carbimozole to the point that his levels balanced and he didn't take any meds again. Good luck OP!

Did they not try you on a different medication first ? When I was in hospital they said they won’t do a thyroidectomy unless I had a goitre and I couldn’t have the radioactive drink because I have a six month old.

60mg of carbimazole is a high dose, I was started on 40mg initially. The propranolol will help with your symptoms, particularly the palpitations which are horrible and make you feel so ill. I would try calling the hospital and asking if you can be prescribed PTU which is the alternative drug to carbimazole.

I'm sorry to hear this OP, sounds horrible. Lots of similarities here (but without the hospitalisation): I was also diagnosed with GD 6 months after having a baby (likely triggered by pregnancy/childbirth). I also couldn't tolerate carbimazole and it made me horribly itchy. Carbimazole didn't actually work on my thyroid, it made minimal difference to my blood results and the consultant actually asked me if I'd taken the tablets! I was switched onto propylthiouracil (PTU) and have been fine on that ever since.

I think you need to insist on being put on PTU now. Your numbers sound high and it sounds like you have been really unwell. Unfortunately I've found that a large part of my care for GD on the NHS has had to be self-driven because the hospital doesn't give appointments as often as they themselves say I need them and the GPs don't like to mess with the meds. I have to make a nuisance of myself.

Good luck!

@Constantgraving I’m 6 months postpartum aswell maybe that’s what triggered mine. Im going to phone the hospital and see if anyone will prescribe me the ptu.

My GP wouldn't even prescribe carbimazole so I had to wait from May until September to see the consultant. Your levels are very high so if you can get hold of the consultant secretary's number I would chase up for a sooner appointment.