I’ve been on carbimazole 20mg for 5 weeks.
I’ve been itching for the past couple of weeks but the last few days I’ve had severe itching and a nettle type rash. I’ve been taking antihistamines which help a little but I’m waking during the night scratching.
I’ve looked online and this seems to be a side effect. Should I continue taking carbimazole?
If this is severe and antihistamine don’t help, discuss with doctor.
There is an alternative you can try, an older drug called PTU (Propylthiouracil).
Thanks for replying. I’ll see how things are tonight and call my GP tomorrow if I have another night like last night
Hello Chi :
Reading your story, if you have the infamous PIL to hand you will see that this itch is a side effect of the Carbimazole.
Please contact your doctor and ask if you can be switched to Propylthiouracil - PTU - for short - it is an " older drug " and likely better tolerated. though it's likely to still have a " scary PIL " that you should find within the boxed medication.
I'm with Graves post RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease and hypothyroidism and self medicating with full spectrum thyroid hormone replacement.
Thanks for replying. Carbimazole seems to be working as symptoms have reduced. Goiter also smaller. Happy to stay on carbimazole as long as the itch is normal and manageable
Well PTU does the same job but if you prefer stay on the Carbimazole some people are also prescribed an antihistamine which should alleviate the itch.
I was on only Carbimazole and found my symptoms of exhaustion, insomnia and dry gritty eyes alleviated within a week.
Graves is an auto immune disease and something has happened to trigger your immune system to attack your body and Graves is said to be stress and anxiety driven.
The thyroid is a major gland responsible for full body synchronisation, including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
The thyroid is the body's engine so we don't really need it running too fast or too slow.
The Carbimazole is an anti thyroid drug and prescribed to block your own T3 and T4 thyroid hormone production so your T3 and T4 levels do not rise any higher and slowly these should drop back down into range and your symptoms ease with you feeling more comfortable.
Your levels were not very high to start with so the AT drug will likely be titrated down otherwise you run the risk of being " slowed down " too much and risk experiencing hypothyroidism, which is equally disabling.
There is also a tendency for our core strength vitamins and minerals to " fall through the floor " so it will be prudent to arrange for your ferritin, folate, B12 and vitamin D to be tested as these need to be maintained at optimal levels to help you through this phase of the treatment.
You might like to dip into the Thyroid UK website as this is the charity who support this forum where you can read all around all thyroid health issues.
I found the Elaine Moore Graves Disease Foundation an excellent adjunct - and just wish all that I now know I has known back in 2003/4 when I was diagnosed.
Thanks. I’ve to have a blood test next week and hopefully my carbimazole dose will be reduced
I think it would be a good idea to collate copies of your blood test results as you go through this first phase of the disease.
In this way you will be able to track your T3 and T4 down from your first set of results and get an understanding of what level of AT medication suits you best.
The NHS generally allocate a 15-18 month window with the AT drugs with the aim being for you to find " remission " and come off the drugs within this time period.
However if your antibodies are still " raging " and your immune system still on " the attack " a longer period of AT medication can be considered, in fact there are forum members here who have been on AT medication for years, and monitor themselves as " life stressors " get in the way.
The thyroid is the victim in all this and not the cause :
The cause is within your own immune system and currently mainstream medical do not really know or understand how to manage this component of this disease.
The British Thyroid Association have a research arm and there was/is a trial of a Graves vaccine, a year or two ago now, called the Daviad Project, but I haven't seen anything on this front for several months.
I had a similar experience but antihistamine did keep it under control. It was the hay fever season, so I was taking tablets every day. At the end of the hayfever season, when I stopped taking the antihistamine, I found the reaction to carbimazole had also gone. Most hay fever tablets these days are the ‘once a day’ type, which are fine for hay fever but probably not so good for something you will experience 24/7. You could try asking your pharmacist to recommend alternative antihistamines.
Hi I have been on Carbimazole since 2006 with about 4 breaks in between, but my thyroid doesant want to stable it self so I have to go back on Carbimazole again, thankfully I have not any side effects, I agree with pennyannie keep track of your thyroid blood results, it has helped me to understand what dosage is good for me, I only take 5mg per day, I do hope you get the problem sorted
I had a horrendous rash mostly round my neck and my chest. I felt everytime I took a tablet it was feeding it and making the rash errupt even more. Just by chance I forgot to take one due to lack of sleep and the rash wasn't so bad that day. Did an experiment over the weekend after ringing 111 and managing to speak to a GP he suggested taking another the next day see what happened. Yes it started errupting again and to ring my GP on the Monday I stopped it for two weeks my skin gradually improved. After the two weeks I was put on propylthiouracil I've been on 2 X 50mg tablets for the last 10 month. My bloods are now back in normal range so they are going to try and wean me off next March. Hope this helps don't suffer in silence.
Thanks. My GP has told me to stop it for now and has arranged blood tests on Monday. She also gave me a different antihistamine
Just to say - if your antibodies are still over range next March it's pretty pointless thinking of coming off the AT drugs - the longer the treatment with the AT medication, the more chance there is of remission.
Graves can take it's time, it's an auto immune disease, it's a genetic malfunction, and once triggered, you are more prone to further attacks.
Without a thyroid, your symptoms are not considered life threatening and the hospital discharge you as hypothyroidism is treated in primary care and not " life threatening " :
Having had RAI for Graves in 2005 and knowing nothing I simply trusted the system.
I deeply regret this treatment I was given, and I find hypothyroidism much worse to live and manage and am now forced to self medicate with NDT if I'm to get back to better health.
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