Log in
Thyroid UK
100,823 members114,577 posts

Grave's disease treatment update and question about agranulocytosis

Hello everyone,

I posted on here when I was first diagnosed nearly three months ago. I was very frightened and the three treatment options offered to me all filled me with dread.

I was also worried that I would have to go gluten-free to optimise the treatments. So much has happened since then. I had the blood test for Coeliac antibodies and they were present so for a while, I had to concentrate on getting a proper diagnosis (endoscopy) and learn all about the gluten-free diet. It was a huge shock to be diagnosed with two auto-immune diseases within two weeks. I have now been gluten-free for 8 weeks and it really isn't as difficult as one might think. I think it helps that, as the only vegetarian of the family I was used to preparing different meals. There are also so many gf products available now that there isn't really anything that I now miss.

With regards to the treatment for hyper-thyroid, I switched endos as I really wasn't happy with the first consultant I had seen and he was retiring anyway. I now see a lovely lady endo (I don't think I am allowed to name on the forum?) and she is really happy with my progress. I started on 20mg Carbimazole twice daily for 6 weeks then 20mg for two weeks and my levels have dropped so low now that I am on the maintenance dose of 5mg after only 8 weeks.

Best of all is that I had lost nearly two stone. I was told by my first endo that the weight would pile back on as soon as my thyroid levels dropped. I am weighing myself daily and I have only put back on 2 lbs so far. I am hoping that the gf diet will help with this although now that I have found yummy gf biscuits it might be more difficult.

My only concern now is the possibility of agranulocytosis. It is drilled into patients on Carbimazole that you have to rush to the doctors to have a blood test if you have a sore throat, mouth ulcers or bruising. I have had a sore throat since before I started on the drug (and was the reason I had my bloods checked in the first place). I have had mouth ulcers but that was due to having very crispy gf batter on fish which ripped my mouth to shreds! I have also had two bacterial throat infections for which I needed antibiotics. My treatment plan is to be on the maintenance dose of Carbimazole for eighteen months but my question is - how quickly should I react to these symptoms? I can't keep asking for a FBC at my surgery on a weekly basis as I have been doing so far. Has anyone actually had this agranulocytosis? If so, how did you know and what happened?

1 Reply

First time I got a sore throat / swollen glands I went for a blood test straight away - it was fine. Next time I waited a couple of days to see what happened then thought that as it was coming up to a public holiday and the surgery was going to be closed for a few days it might be a good idea to get checked out.

This time the doctor though we should 'wait and see' ( I was happy with that) I didn't mention that I had already been waiting and seeing and nothing had happened. As it was I was fine.

Rightly or wrongly I was of the opinion both times that if I had agranulositosis then I would have felt very, very ill quite quickly and would have been in absolutely no doubt about what was wrong.

Probably a good idea though to speak to someone if you are worried though or if it is your first sore throat after starting Carbimazole or PTU

Dr Toft says in an article in Pulse Online he was talking about patients who want to stay on Carbimazole for many years that "people who going to have any adverse effects then it will occur within a few weeks of having started their first course of Carbimazole."

Hopefully someone who has had agranulositosis will come along and give you the answer you are looking for.

The office is closed this weekend because Louise is at the conference but you can contact Her next week and she will send you the article, you can also give her the name of your good endo for her list.


You may also like...