Side effects of Carbimazole or just a cold

[Trying-To-Juggle]

At what point should I be worried about feeling crap and assuming it’s a cold and moving on to it being side effect of Carbimazole? In the little leaflet it says to speak to GP if you have a sore throat/temp etc.

[Rmichelle]

If you have a bad sore throat with high temperature youust get a urgent blood test done to check your white blood cell count, it is difficult as you can spend a lot of time getting blood tests done especially in winter time when there is a lot of viruses going around, if its going to happen it usually happens within the first 3 months of taking carbi, it can be accompanied by mouth ulcers too, rule of thumb is ......if your are worried get your full blood count done asap. Better to be safe than sorry.😀👍

[Fruitandnutcase]

First time I got a sore throat after I started carbimazole I went to our surgery and had a blood test. I didn’t have to wait or anything - didn’t even have to argue to get it either - really unusual!

Fortunately my white blood cell count was ok so I carried on as normal. Next time I got a sore throat I saw a practice nurse who consulted with a doctor and we decided on a ‘wait and see’ approach which I was happy with. I didn’t have mouth ulcers and I didn’t feel terribly ill. I felt, rightly or wrongly that if I had agranulocytosis I would have felt incredibly ill. As it was it all blew over.

If you are feeling rough and have a sore throat if I were you I’d want to have a wbc blood test to be sure. It’s not worth taking a risk. I was warned by everyone from the consultant who prescribed carb to thepharmacist who dispensed it that I needed to read the patient information leaflet and do exactly what it said.

[Millea]

I’ve been on carbimozole for several years now and during that time I’ve had several sore throats - it’s never been due to low white blood cells however I agree with the two other posts. Pop down to your GP - talk to the reception and get the blood tests. If all is well (which it prob is) at least you are reassured and can stop worrying. But don’t ignore all the advice to get it checked. Let us know how you get on.

[Rmichelle in reply to Millea]

Wow several years of carbi!!and I cannot wait to get rid after 14 months, hope you're OK💛

[Millea in reply to Rmichelle]

Yes - thank you was diagnosed with Graves in 2015 then developed TED - put on carbimozole and propranolol initially. As hormones levels dropped I came off propranolol and think I’ve now found a good control level of carb at 25mg per day. Of course that all sounds very simple but it’s been a journey and it took three endos before a found one that actually knew more than I did and didn’t dismiss me a lunatic. 🤪 But TED is in remission - yay and goitre has settled down now - double yay!

[Rmichelle in reply to Millea]

Yes its a rollercoaster nightmare isn't it😬 its been hard for me , I'm on 2.5mgs every other day at moment so a tiny amount for me, still symptomatic with some things, I have been blessed with hashi too!! Aaw I'm glad you have found a happy medium....long may it last for you, good luck🍀

[Millea in reply to Rmichelle]

2.5mg seems low if you are still suffering symptoms. When did you last have bloods done and do you have the results including the ranges in brackets? If so, post in a new post and you’ll get sone feedback from members to discuss with endo.

All best. I know it’s a real journey and it doesn’t help that there are so many hurdles to jump when you feel least able to do anything.

[Rmichelle in reply to Millea]

I do have bloods regular every month, I'm better than I was last year, I due to see Endo on Tuesday, I have hashi/graves and dire iron def which is getting sorted, I'm in range but not optimol for me as I need to raise my frees as they need to be higher end of range but have been stuck for the last few months at the same level,bi need to go to every two days to try and kick them them up to feel better, thankyou I'm abit of a regular here over the last year, I will definitely be posting after Endo appt on Tuesday as I always hace something to say but thankyou👍🌟

[Millea in reply to Rmichelle]

Sounds like your doing everything you can and your well on top of your care. Good luck at your next appt. All best.

[Rmichelle in reply to Millea]

Thankyou millea but it is hard, but I will get there, symptonfree one day hopefully. Bless you. Goodnight. Good luck🌟

[Brackenholme21 in reply to Millea]

I was diagnosed with Graves at start of 2016, I had TED too. Put on carbimazole etc and slowly improved in July 2017 came off all medication but unfortunately relapsed in Sept. End then said couldn't continue on carbimazole and putting me forward for thyroidectomy as due to TED did not recommend RAI.

Am now only on 5mg carbimazole and feel loathe to have this surgery when spoke to Endo said as relapsed last time highly likely to happen again so should continue on thyroidectomy route . Any suggestions thoights would be appreciated .

[Rmichelle in reply to Brackenholme21]

Hi there just to say that a year later my Endo says I will probably end up having surgery next year even if my levels stay in range as you can still be symptomatic , I am going ahead with it if the offers there!!👍😀

[Valarian]

This question comes up a lot, and most of us have been there, but as Fruitandnutcase suggests, the lack of argument once they’ve had the situation explained shows how seriously they take it.

Take the leaflet with you - given that we’re referred straight to specialists, they don’t have a lot of experience of treating Graves’ in GPs’ surgeries.