I've been using Carbimazole for 6 weeks for over active thyroid. Rash has been getting progressively worse through December.
80 percent of my body is covered in a rash. After mistakingly missing my Carbimazole on Thursday morning I noticed the following afternoon the rash round my neck area had eased considerably. I took Carbimazole the next morning and by late afternoon my rash was up again around my neck. Hoping to speak to GP today. Anyone else had experience of rashes after longtime use of Carbimazole.
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Cookingongas4
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I developed hives/urticaria around 6 weeks after starting carbimazole, mostly on arms and legs and extremely itchy. Went to gp who telephoned my consultant. They couldn’t know for sure if it was due to the carb but I was switched to the second choice drug for overactive thyroid - ptu - which worked fine.
Have you tried taking antihistamine tablets? I had a rash (not as bad as yours) when I first started taking carbimazole, but it was kept under control by antihistamine. When I stopped taking the antihistamine at the end of the hay fever season, the rash didn't recur.
As Querty12345 has suggested, you could also ask to be switched to PTU, the alternative anti-thyroid. It does carry a greater risk to the liver, although this rarely materialises, and at higher doses especially may need to be split into multiple doses over the day which can make compliance more difficult. However, it's considered safe enough to prescribe to women in the first trimester of pregnancy.
Hi thank you. I've seen GP he's spoken to an Endocrinologist who advised stopping Carbimazole and going over to PTU we agreed to let my skin heal first for 1 - 2 weeks. Then start the PTU, changed my antihistamine from ceterizine to fexofenodine. Just happy I seem to have found what caused this awful rash fingers crossed it's on its way out albeit slowly. My daughter came with me who suffers from Graves disease she tolerates Carbimazole just fine.
The Patient Information Leaflet for carbimazole says:
Allergic reactions
If you have an allergic reaction, stop taking Carbimazole and see a doctor straight away. The signs may include: sudden rash, swelling or difficulty breathing. Stop taking Carbimazole and see a doctor straight away, if you notice any of the following side effects:
• Any infection such as a sore throat or mouth ulcers
• Fever
• Unusual bruising or bleeding
• Feeling unusually tired
• You are feeling generally unwell or think that you may have an infection. Your doctor may need to do some tests to check for something called ‘bone marrow depression’ before you start your treatment again.
Later, they just list skin rashes as another side effect that sometimes happens. Which leaves you having to assess whether it is a sudden rash or just a skin rash. Not very helpful.
I urge you not to leave it any longer than today.
Also, regardless the outcome, please make a Yellow Card report.
Hi. I want to try PTU. GP is not recommending any chances so I have become non compliant and my bloods are way off the charts. I usually feel sick with nausea and get terrible headaches plus lose my sense of taste. In October I got flu like symptoms, fever, mouth ulcers and was very sick with sore throat. Ended up in ED with a heart rate of 180bpm and supra ventricular tachycardia. Here I am in December non complaint. T4 is >100 range 10-22. And my T3 is >50 range 2.0-6.0. I don’t see my Endo until March. I see dr this week and I have to ask to be out on PTU. Why is it so hard? 😞 sorry
It could well be the Carbimazole as I was told on collecting my prescription that if a rash appeared I had to go straight to A & E : but that was way back in 2003 ;
There is an alternative referred to as PTU - Propylthiouracil : both these AT drugs have side effects and you should have been given a Patient Information Leaflet with the medication.
Have you been diagnosed with Graves Disease and do you have the medical evidence showing over range TSI ( a stimulating ) and or TR ab ( a blocking ) antibody ?
I hope your symptoms have eased since being on the AT drug and that your T3 and T4 numbers have reduced from when first diagnosed - keeping a record of your blood test results will help you understand better what's currently going on and these can be explained to you, on this forum, if it's all going over your head, which is normal, when first diagnosed.
I don't know if you are aware of the Elaine Moore Graves Disease Foundation.
Elaine has Graves and went through RAI treatment and finding no help with her continued symptoms decided to start researching this poorly understood and badly treated autoimmune disease herself.
Elaine has now published several books on thyroid and autoimmune issues and her website also offers an open forum where anybody can ask a question and be answered by other forum members, or Elaine herself.
There is many sections and much research into the autoimmune component of this disease which current mainstream medical have no answers.
Alternative and holistic options are detailed and these need understanding and consideration as Graves does tend to be a stress and anxiety driven autoimmune disease.
You might also like to read further on the Thyroid UK website wo are the charity who support this amazing forum where you can read of other people's experience and offer support and advice.
Sadly I found out about my situation, back to front, several years after diagnosis and RAI thyroid ablation when I became very unwell and found very little help nor understanding in the medical mainstream.
I now manage lingering Graves, thyroid eye disease and hypothyroidism and source my own thyroid hormone replacement as currently, routinely, the NHS does not offer any alternative thyroid hormone replacement other than T4 - Levothyroxine.
I'll take a look at that thank you. Yes I need to understand this situation I'm in have no idea about it all. I was symptomless it was picked up on routine blood test. My daughter has Graves so I'll get her to talk me through it all. Thank you.
If you have no symptoms I think it imperative to ask for the medical evidence unique to Graves which must show over range TSI ( a thyroid stimulating ) and / or TR ab ( a thyroid blocking ) antibody blood test :
Do you have any details of your TSH, T3 and T4 blood test results and ranges at diagnosis :
Graves generally shows symptoms some of which are considered " life threatening ' - so being symptomless is a little disconcerting.
I've only been on this med for a few weeks and due next blood test soon, they said they will review dose and may change dose. As you have been 6 weeks which is longer than me have they advised about any change in dose or sent you for a new blood test?
I came out in a rash when I took Carbimazole so my doctor changed me to PTU which suited me a lot better. What were your levels when you were first diagnosed? You need to have regular blood tests because my useless Endocrinologist overdosed me on PTU. When I told him how ill I felt he offered me counseling so I left his clinic never to return. Not that I would suggest anyone should do that but not a lot of doctors know how to treat Graves' One of the first things he suggested was I had either RAI or my thyroid removed and I am glad I ignored his advice because here I am 10 years later still with my multinodular goiter. I do realize that some people have no choice but to have their thyroid removed.
Elaine Moore helped me get diagnosed and here is a link to her site.
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