Urgent - some carbimazole advice please!

[MistyD]

Hi All,

Been taking carbimazole just over 4 weeks now.

Yesterday I was feeling a bit unwell and have a dry throat, sore goiter, tight chest. The throat isn't sore, it's dry and tickly. I have less saliva. It's bit more difficult to swallow. Kind of feels like a cold coming on. Feel foggy.

Now when I look up carbimazole it says

"Important: if you develop either of the following contact your doctor straight away:

An infection, sore throat, mouth ulcers, high temperature, unusual bruising or bleeding, or if you generally feel unwell.
Jaundice (yellowing of the skin and whites of the eyes).
If you experience any other symptoms, which you think may be due to this medicine, discuss them with your doctor or pharmacist."

and somewhere else it says
"Carbimazole is a drug that is used to treat an overactive thyroid gland. If you are taking carbimazole and develop a sore throat then you should have an urgent blood test. This is because a sore throat may be the first warning of a serious side-effect to carbimazole (agranulocytosis - which is a low level of white blood cells). This serious side-effect needs urgent treatment. Agranulocytosis can occur as a side-effect of various other drugs.

The 'take home' message is ... see a doctor if symptoms of a sore throat are severe, unusual, or if they do not ease within 3-4 days. In particular, seek urgent medical attention if you develop: difficulty in breathing; difficulty swallowing saliva; difficulty opening your mouth; severe pain; a persistent high temperature; a severe illness, especially when symptoms are mainly on one side of the throat."

Now I know I can feel unwell with Graves, and I know I can be paranoid/hyperchondria with Graves. I've actually been feeling much better in the last week, then this starts. I don't know if it's just a cold, but I do feel unwell.
 I don't have a temperature, or ulcers and like I say throat isn't sore just incomfortable.

My question is how bad do you need to feel to worry about it? Also because it's the weekend, shall I just wait till monday and if still feeling unwell, go to my docs? Will a couple of days matter? Has anyone here had to stop carbimazole? Shall I carry on taking my carbimazole? If it is the rare side effect, is it treatable? Can it kill you? Should I ring an out of hours doctor? I'm supposed to be going to a gig tonight (seats in disabled section so not standing) and if I start calling doctors today my husband will ban me from going tonight.

Sorry, I'm just worried, and I don't want to disturb/call out docs unnecessarily if this is just a cold.

Thanks
Dxxx

[anita]

hi misty !!! Its so awful when you are worried is'nt it ?

I personally dont know enough about being treated with the carbimazole !!

BUT hey if you are feeling up to going to a gig tonite then I would say its not that urgent to call a doc out

why dont you ring nhs direct and have a word if its ok to wait till monday as you feel ok but anxious about reading the side effects on the tablets !!

      take care misty luv anita H xxx

[yorkylass]

Hi Misty, I was warned by my endo if I developed any sore throat OR sign of infection to stop Carbimazole immidiately and get a full blood count.

I did this about 3 times during treatment.

Stopped Carb straight away, phoned my endo, he arranged a blood test a.s.a.p and he called back next day with results.

Luckily everything was fine, the problem with white blood cells that Carb can cause is very rare.

Each time I "bothered" my endo, he told me I did the right thing and praised me for being so assertive.

It does sound like a common cold that you have, when I had the fbc and stopped my meds I was running a fever.

First thing Monday if you feel the same and still unsettled about it, call your gp/endo and ask advice.

What gig is it you're going to? Are you still going??

Yorkster xx

[MistyD]

Hi Both,

Thank you for easing my mind.

I called the out of hours doc and had a good chat. He said he thinks it sounds like a cold. He said it is very common that carbimazole can suppress your immune system a bit and you can pick up colds etc easily. He said it might be that I need to change my dose slightly. He said to go tonight if I feel up to it and it might do me good. He said if I'm worried to call the number again and if I want to I can go in tomorrow to get my throat and bloods checked. Or wait till Monday. He said not to worry.

I will see how I feel tomorrow and go in or wait till monday.

I feel pretty rough but really want to go to the gig tonight. Its Queens of the Stone Age. I'm in Sheffield and it's in manchester, I have a lift there and back. I am a bit apprehensive travelling but I really love the band. I have no energy to dance and the venue have been great making sure I have a seat in the disabled section. I am still going. I should probably be in bed resting but don't want to miss them.

I don't have a fever currently.


Strange that doc said it is common for side effect of carbimazole but yours says its rare. Unless mine meant it's common to make you a bit poorly and rare for full on bad effect. I would have thought if this drug was that bad they would test your fbc regularly! Maybe I should anyway for peace of mind. But will wait till tomorrow or monday.

Thanks both xxxxxxxx

[anita]

hiya misty !!! I am glad you rang at least you got peace of mind !!!

and do enjoy queens of the stoneage and as the song says GO WITH THE FLOW

Have a good night 

luv anita H xx

[Rosemary]

Your endo should have given you a sheet of paper with all the info on about what Carbimazol can do. Mine did and it said you should go straight to A & E even if it's middle of the night if you got sore throat.I went to the A & E department one day and they hadn't heard anything about this and said they couldn't do a blood test without authorisation from the doctor so good job it wasn't serious. I had to contact the endo department and got it done but suppose it had been in the night. I think it must be quite rare for something serious to happen or surely they would have been aware of it. Hope you are OK.

Rosemary
x

[MistyD]

Hey there!

I did enjoy the gig. I had access to the diasable area so was able to sit down. I still find I am extremelly fatigued with this Graves disease. I wouldn't have been abe to tolerate the hot crowd either.

Rosemary, it is interesting what you say. I have never been given an info sheet with my carbimazole. My first lot was given to me in hospital, I asked where the info sheet was and they said they didn't have one. Second lot was given to me in a bottle, so no info sheet. My husband picked them up so he didn't ask for one. I would have!  Guessing that's quite bad really! They even spelt my name wrong on the bottle.

I still feel groggy, but I suspect it is a cold. My throat isn't sore, just dry. I'm feeling a phelmy swallowing sensation. My goiter is really annoying me and feels a bit sore, so my neck is uncomfortable.

I haven't been to the docs for bloods. Do you think it is worth it? I am very surprised they don't just do it as standard when I had my T3, 4 and TSH tested last week. I don't want to have unecessary injections but also don't want to take a risk if it is one. If my throat was sore, I'd go down straight away. What do you think? I'd prob have to go tomorrow now as it would be too late to get an appointment.

I do think I will get my husband to take me back to the pharmacist and ask for a leaflet. Is there a number on the leaflet to ring if you have issues? My endo last week just said to go see my doc if I get a sore throat, he didn't say in the middle of the night or seem that worried.

btw another question not related to the above, am I ok to drive short distances? I haven't driven since being diagnosed and forgot to ask the endo!

Thanks xxxxx

PS they didn't play Go with the flow! boo!

[MistyD]

Feeling worse. My goiter is hurting and my voice is hoarse so I rang my endo. He rang back and says I should go for a blood count urgently. So I've booked in for tomorrow. He said I have to go for gp for it but prob won't be able to today so tomorrow morning will have to do! He's told me to stop carbimazole until we know what my white blood cells are doing. He said if they are ok I can go back on the carbimazole. He said it might be thyroiditis. My thyroid is already large but it might have got more imflammed and we need to know the cause. 
fed up
I assume whatever it is can wait till tomorrow or he would have told me to go to A&E

[MistyD]

Been to gp, had bloods, now waiting. Interestingly I do now have a temperature and my throat is red. Doc said I've done the right thing. Should find out wbc this afternoon.

I asked doc and she didn't know....does anyone here? How long after stopping carbimazole do you start making thyroid hormones again? Just wondering if I'll end up increasing my levels again?!!

This Graves' disease SUCKS 

[tasukete]

Hi, sounds like you're doing the right thing, I was on PPU and was told to look out for mouth ulcers and sore throats. I got a mouth ulcer a few weeks ago, which never happens so I phoned the docs and they told me they were'nt worried but I should get a blood test anyway. Turns out my blood count was slightly low, but nothing to worry too much about, so they stopped my meds. I'd gone hypo anyway because I was over medicated.

I'm telling you this because now I'm in the position that I'm not on medication and am supposed to be getting blood tests done every 2 weeks, but my endo has been away so I can't get my results. Now I'm feeling hyper again, or hypo, I can't quite work out which, but I don't feel great anyway. I'm not due to see him again until June, and he doesn't want another test until just before I go. so now I'm left feeling weird and not being able to do anything about it until June. So if they do stop your medication, you need to make sure they are going to closely monitor you every two weeks or even more frequently.

As for how long you start making them again, I went off the medication at the start of April when I was hypo, never really felt normal again but then I'm sure I went hyper at the beginning of this month, so I guess a month.