Help Please...Carbimazole, Widespread large Hives, A&E... Stuck....

[wildpoppy]

Hello again

Quick history, diagnosed in A&E HYPER with tachycardia, 8th August 2016, 3-4 weeks ago. TSH<0.01 T4 51... Carbimazole 40mg daily taken all at morning (not spread out)

Last week (3 weeks into Carbi)... Small isolated itchy hives... Arms & hands mainly

Throughout week, increase in size and quanitiy... And some on hips

Today... Took pills as usual, hives in big clusters on back... hives moving around, really itchy and hot... Progresses badly, arms, neck, head, ear, torso front and back, chest, bum....Super itchy and red and hot welts...all over body and swollen...so went to A&E...

Doctor there gave me Piriton, told me to see GP but continue Carbi with Antihistamine...

My dilemma:

Since getting home, hives (although initially got better) started coming back before the dose of Antihistamine ran out... So the antihistamine is not getting rid completely...

Tomorrow... What on earth do I do??????? Take Carbimazole again?? I am super frightened This was really severe.

I had bloods taken, Liver normal etc, white count ok...

TSH still <0.01 T4 42 (so its come down 9 points in 3 weeks)

He said a rash was common on Carbimazole (this isn't just a rash, it was/is a RASH!! Similar to my son when he had anaphylaxis)

Seriously though... Is this really common?? Hives that bad?

Should I split my 40mg dose tomo and take 20 in morning and 20 in evening? Would it possibly help? Dose taking on empty stomach make worse?

They said there was another drug but it has worse side effects?

I'm really stuck here, I don't know what to do??

I would love to hear from anyone that has had similar, or any advice.

I REALLY do not want to take these meds tomo Feeling pretty down about the whole thing.

[Qwerty12345]

Hello. I was diagnosed with graves and I was started on carbimazole. My graves symptoms came under control very quickly but 3-4 weeks in I was covered in angry, itchy hives on my arms, legs and torso. I saw my gp who called my endo for advice. I had to stop the carbimazole and change to ptu. They could not say if it was the carbimazole for sure, or the change in thyroid levels (I became hypo, initially, after I started treatment) or something unrelated that caused the hives. However, they did not want to chance that it was an allergic reaction to carbimazole, hence my treatment was changed. No hives since by the way!

[wildpoppy in reply to Qwerty12345]

Hi Qwerty

Thank you for answering. Yes, I am feeling better, resting heart rate down to 90 from 115 in 3 weeks, but still a bit to go. Glad to hear you recovered fast!

May I ask if you had any side effects from PTU... I have heard the horror stories but it would be nice to hear from someone that has taken it...

So they think it may have been an allergic reaction? How long did you have the hives, did they come on all of a sudden? Or gradually? Glad the hives have gone, must be the Carbi, I am sure it is for me.

Someone on here said that after a few weeks their hives disappeared. It really is hard to know whether to take the risk with continuing it

Thank you for you help

[Qwerty12345 in reply to wildpoppy]

As far as I remember I had one or two small, isolated hives that came and went without much notice and then a few days later and much more suddenly, over the course of a morning I developed hives that were fiery and extensive and impossible to ignore. I stopped the carbimazole as instructed and also took antihistamine from the gp and the hives were gone next day I think, certainly very quickly for sure. I had no side effects from ptu. I would ask for your endos opinion and go with that. I went to the gp with my hives and they weren't sure what to do so phoned the endo team at the hospital for advice. My gp phoned me later in the day to tell me what I should do after speaking to an endo.

[wildpoppy in reply to Qwerty12345]

Thank you... Thats really helpful. I will go to GP tomorrow... Or perhaps ring my Endo's secretary.

I took half my dose of Carbimazole today (20mg instead of the usual 40mg), plus I split the dose....had less hives today because of that, much less... Ones that didn't bother too much.

Thanks for answering