Hi all. I'm a relative newbie to this but was diagnosed with Grave's Disease four months ago after a chance blood test, I never suspected anything to do with thyroid.
My initial levels were very high - T4 in the 80's and TSH <0.01. I was put on 40mg carbimazole and 4-6 x 40mg propranolol each day. I had regular blood tests and there wasn't much improvement so I went up to 60mg carb, later going back down to 40mg.
I have found the drug very difficult to tolerate and have experienced muscle weakness, severe nausea, itching and rashes. My blood levels started to come down but only slightly, my best score after three months was T4 in the 60's. For some reason my thyroid decided to go into extra overdrive and my latest blood test two weeks ago shows it back into the 80's!
I have now reached a point where my body cannot tolerate the drug with the side effects, and it doesn't seem to be helping much with the thyroid either!
My very kind endo, who is head of the department, has told me I am one of the worst cases she has ever treated! I have been put onto propylthiouracil for the time being but she is not 100% convinced and wants to book something in very soon to treat it. She doesn't think my levels will come down enough for RAI soon - she said T4 needs to be 25 - and seemed keen to move forward with the surgery quickly.
Personally I would like to get back on with my life and have gone from having a successful career and being extremely active to being very unproductive! I would like an improvement soon too.
I am looking for anyone's thoughts or opinions on this. Anyone been in a similar situation? Anyone not responded well to carb? Experience of propylthiouracil? Had surgery etc?
Many thanks in advance.