Sore throat on PTU/Carbimazole: agranulocytosis

[ERSH]

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

[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 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 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 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 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 in reply to helvella]

thanks for this link!

[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]

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!