Carbimazole Tablets

[Tinjo]

Hello everyone, I have been on carbimazole for nearly three years now for an overactive thyroid but my results have never produced a positive stable result, improvements but not cured. My Consultant wants me to have radioiodine treatment but I am very reluctant too, has anyone else been on these tablets long term ? and resisted radioiodine treatment.

[Ansteynomad]

My friend refused surgery and RAI. In the end she was on Carbimazole for five years. Her condition has now settled and she is on no medication.

[Karen321]

I’ve been on carbimazole for just over 3 years some good improvement but not right yet. It can take a long time but long term low dose carbimazole is safe and I too have refused RAI or TT as I have Graves’ disease and will always have it so I’ve no wish to swap one condition for another. There are new treatments undergoing human trials so there is hope on the not too distant horizon. Hang in there and don’t be bullied into doing something you don’t want to do.

[Samru24]

Hi Tinjo, I was on carbimozole for 4 years and twice tried to ween off them but each time my levels would creep up again. A year ago I finally stopped medication and although my levels have gradually dipped again I am hanging on by a thread at a level just above intervention and amazingly have no symptoms. Over the course of the 4 years of treatment each time the dosage was lowered and my levels would take a dive my endo would talk about RAI. Each time I would refuse. To be honest they cannot force you to have RAI. My endo has changed 3 times over the course of my treatment & luckily my current endo has agreed that there is no issue with continuing carbimozole treatment indefinitely. You just have to be aware of the risk and be sure to discontinue use and get bloods tested anytime you get a sore throat.

As I say I have been off meds for just over a year now and get bloods tested every 3 months. Fingers crossed I'll keep teetering on the edge & hold off going back on Carbimozole for a while longer.

Don't be bullied into anything. Once the meds are working and keeping you symptom free and able to function stay on them.

Good luck.