Sore throat on PTU/Carbimazole: agranulocytosis - Thyroid UK

Thyroid UK

137,156 members160,846 posts

Sore throat on PTU/Carbimazole: agranulocytosis

ERSH profile image
ERSH
8 Replies

Hi again everyone

Just wondering - how many of you who are on PTU or Carbimazole actually go to A&E for a blood test every time you get a sore throat?

I've got a sore throat atm for probably the 4th time since starting my hyperthyroidism treatment. The first time I went to A&E (which was pretty stressful as I was in America and not insured for preexisting conditions - long story!), since then I've not bothered and it's always been fine.

The sore throat I have at the moment is quite annoying - painful to swallow because its very sore on one side - but I've had it since yesterday evening and it's not appearing to get worse.

So anyway, my question is, do you think it's important to be cautious and go to A&E every time you have a sore throat incase it's agranulocytosis, or do people take this with a pinch of salt?

Advice would be great!

Thanks

Written by
ERSH profile image
ERSH
To view profiles and participate in discussions please or .
Read more about...
8 Replies
Fruitandnutcase profile image
Fruitandnutcase

Well, when I was taking carbimazole a few years ago, 40mcg a day all at once, I used to get sore throats / swollen glands. First time I went to my GP and had a blood test, it was negative.

Next time it was coming up for a big holiday so I went down and spoke to the nurse who spoke to the doctor who decided we should adopt a 'wait and see' approach.

That suited me fine because deep down I had always felt that if it was agranulocytosis then I would have felt very ill, I never had mouth ulcers or any of the other symptoms listed on the PIL.

So, I would never say ignore it or even take it with a pinch of salt because agranulocytosis a really serious condition - otherwise you wouldn't be able to ask for and get an immediate blood test - I mean I didn't even have to argue my case with the receptionist when I went down the first time - but in my case after the first time I felt I knew my own body and I knew that nothing had happened after my first blood test, and apart from very slight swollen glands I felt perfectly well. I always had a feeling that if it had been agranulocytosis I would have felt extremely ill, but I'm no medical expert.

ERSH profile image
ERSH in reply to Fruitandnutcase

thanks for this. that's sort of my feeling too that surely I'd know if something was that wrong? my informal policy with myself is give it a day or two and if I start feeling a lot worse then leg it to A&E, if not then it's probably a cold that will clear up! But then I just read on the NHS website that it can be hard to spot the symptoms so who knows!

Fruitandnutcase profile image
Fruitandnutcase in reply to ERSH

That sounds pretty much like what the doctor said second time I went about my glands. Would your GP surgery not do a blood test for you? They should do.

I used to make sure my other half knew about agranulocytosis and that my glands were feeling a bit swollen and hopefully if I had keeled over he would have done something about it.

See what other people have to say about it throughout the day.

ERSH profile image
ERSH in reply to Fruitandnutcase

cheers will do!

And yeah the GP almost certainly would do a blood test actually and that's a good point, probably be quicker than A&E!

Am mostly weighing up whether to cancel work and go in today or not (I'm self employed so I'd be loosing money if I take a couple of hours out!)

helvella profile image
helvellaAdministratorThyroid UK in reply to ERSH

Usually medics say that it occurs within the first one or two months of anti-thyroid treatment. However, there is at least this case report of it at 18 months:

ncbi.nlm.nih.gov/pmc/articl...

I implore you to be careful - but is the agranulocytosis a pre-existing condition? I think of it like an anaphylactic reaction to a medicine. The only reason you took the medicine was a pre-existing condition. But the agranulocytosis (or anaphylactic reaction ) is another condition altogether and is actually iatrogenic.

ERSH profile image
ERSH in reply to helvella

thanks for this link!

Qwerty12345 profile image
Qwerty12345

I remember being worried about the gp telling me this when I was on my treatment for graves. Especially because I work with kids and I can have one sore throat after another in the winter! However, my endo emphasised that only an extremely sore throat coupled with feeling very unwell should be a concern. I think I made a nurses appointment (at gp surgery) once when a sore throat hung about for more than a week. As I expected, since I didn't feel very ill, the blood test was negative. But it put my mind at rest. I think feeling extremely unwell with a very store throat and/or mouth ulcers is the red flag. Always best to err on the side of caution if in doubt though.

ERSH profile image
ERSH

update on this - I called my GP today who said the risk is lower on PTU than on Carbimazole (not sure if that's commonly stated, hadn't heard that before!?) - he said I'm probably fine and just to call back if I start feeling worse - which I haven't done, feeling pretty much fine apart from pain when swallowing - just did 2 hours boxing training so am assuming I'm not on the brink of death!

You may also like...

Sore throat and Carbimazole

urgently if you get a sore throat etc. So I’ve come down with a raging burning and scratchy...

Carbimazole stopped due to sore throat.

was put on 10mg of carbimazole on Thursday. Saturday I started with a sore throat, Sunday I started...

Sore throat on carbimazole

that’s making it sore, the doctor really scared me about carbimazole and sore throats. I’m sure...

Just started on 10mg carbimazole and now suffering from sore throat but worried

I've just started on 10mg of carbimazole and I'm now got a sore throat and m gp said I should go...

sore throat on Carbimazole

getting a sore throat, it’s still there now. It’s pretty mild but it’s still there. Does a mild...