Has anyone taken Propylthiouracil PTU rather than Carbimazole?

[Janemariaclark]

Hi I'm wanting to hear from people who changed from carbimazole to PTU because they had side effects from it. Carbimazole causes joint pain and lead legs for me also headaches when I first started taking it I've been on it for around 5 years and just started PTU a couple of days ago and am worried about my liver. I am wanting to hear your stories good and bad! Thanks :).

[Kari55]

Hi, my husband had to switch to PTU as he developed neutropenia on Carbimazole. He is on a quarter of a tablet every other day now. His endo isn’t sure if such a low dose is doing anything at all.

[Qwerty12345]

I was changed to ptu when I developed hives (which may or may not have been due to the carbimazole I had been taking for around 1 month after graves diagnosis). I personally didn’t experience any side effects from ptu. I was on it for around 14 months in total before stopping, around 4 years ago. Haven’t needed treatment since.

Good luck

[dusty2]

Hi, when I had side effects on Carbimazole (Liver) my Endo told me PTU would not be suitable for me as it would cause the same side effects as Carbimazole to my liver.

[twinkiegal]

I was diagnosed with graves about 14 years ago. They started me on Methimazole (the US version of carbimazole) and I got hives. I was on and off PTU for several years until about 3 years ago. About 6 months after starting it my hair started falling out like crazy. My levels were fine. Doctor took me off and hair stopped falling out. After about 6 months I went hyper again and went back on PTU, 3 months later hair started falling out. It was horrible. Seems like I lost about half my hair. When I went hyper again, I started back on a low dose of Methimazole and took an antihistamine along with it. I've been on it for about a year now and it's going fine. Don't need the antihistamines anymore. I refuse to get RAI.

[Jon-R]

I know this thread is old, but I’ve just been switched to PTU after having a reaction (hives) to carbimazole.

First day today, so will report back. I’m on 300mg (6 tablets a day). Pharmacy only gave me a box of 56 tablets though, which will only last a week ish 😬

[Lora7again in reply to Jon-R]

You need to start your own thread and add something about yourself etc.