Graves' Disease Support Group

They started me on 60mg. I had to take 2 x 10mg pills three times a day, and got a head to toe rash the first month I was on it. It made me feel great, otherwise. That combo with about 80 mG of Propanolol made me feel almost normal. Its a bummer that I got allergic to it.

Thanks so much for your response. Are you on PTU now? I'm on 80 mg of Inderal three times a day and my heart rate is still about 88. I'm so sorry you had that rash. How are you feeling? Do you have eye involvement?

Hi!
I took PTU and got a low blood count and bad infection, so they had me stop taking it. For the last 8 months I have only been on the beta-blocker.
I do have eye -involvement, so they are not going to do RAI for me. I have a choice between a thyroidectomy or letting nature take its course. After nature takes its course, i may need a thyroidectomy anyway...
But, knowing that my eyes are funky, I'd hate to have to have surgery after surgery, so my endo and I are currently just taking a "wait and see approach" and hoping for the best. Maybe it will go away?
I hope so! I hope you feel better, soon!
The Met is much, much better for you than the PTU. PTU leaves a terrible taste in your mouth, and nearly killed me. Not to scare you if you end up having to take it. That was just my bad luck. My body is odd, and I get allergic to things after awhile.
Take care!
Heather

I just got back from my eye Doc and I asked most of these questions. Im on 300mg of PTU daily. For me its been great. No side effects..so far.. Im now a bit hypo but thats a good thing because it says the drugs are working. What I need now is my drugs adjusted, which will happen next week. My eye doc said my eyes have receded another 2 points. I learned that bulging eyes and hyperthyroid stare is 2 different things. My eyes could go back to normal placement but still have that wide eyed stare look...go figure... They fix this with eye lid surgery..which is a minor thing...I do not qualify for decompression surgery because my eyes are no longer bad enough and if they did they could make the double vision worse. Which leads me to another thing I didnt know that they can not fix double vision period. They can only give you glasses with prisms in them to help correct the double vision. I was told that as long as my eyes are active at getting worse or better I cant have glasses with prisms. Your eyes have to be inactive for 6 months before I can get them. If your doc prescribed them for you while your eyes are still involved you should be able to refuse them, because your eyes can change in 6 weeks which makes them useless. If I sound intense Im sorry...but I am feeling that way. Its like you have to fight for every little tidbit of information from Docs and it really frustrates me. This is my life and this is my disease and it affects me. Aarrggg... thanks guys I feel better already...I hope this helps

Hi Heather, thanks for the info. I feel better about taking the Methimazole based on what you said. I was definitely not a candidate for RAI because of eye problems that had been with me for months before being diagnosed with Grave's and TED. I'm certainly not planning any thyroidectomy...so I too will be just waiting to see...no pun intended. You just hang in there and as you said "let nature take its course." From all my reading (with one eye closed - Ha) these problems may actually correct themselves and I'm praying to that end.

Hi dairytech, I found this info from you very interesting. Thanks so much. Most disturbing to me is the part about glasses having been prescribed while I have active eye disease. That certainly appears to be unethical. That was done by the optometrist but I intend to discuss it with my ophthalmologist when I next see her. Both of those doctors are in the same eye clinic and share charts (including mine.)The optometrist told me the double vision would not get any better. As you said, maybe they can't fix it (except prisms) but I'm reading two diff. books that state it may resolve on its own. I am livid that the doctor didn't stop to even discuss with me the possiblilty of my eyes getting worse or better before prescribing the glasses. If I had stuck to my guns about the stick on prisms - to try before ever getting the glasses - I may have been better off. Right now I'm feeling as intense as you said you are. I certainly concur with you about doctors not telling us anything and were it not for this support system there are several things I would not know. Why didn't they tell me to use cold packs on my eyes? Elevate the head of my bed? That prisms might help? All these things I've learned here and through my reading. Grrrrrrrr. Again, thank you so much for sharing this info. God bless, Fran

I should be a little bit more clear on the double vision thing. As your swelling goes down behind your eyes your eyes then recede to normal placement in the sockets. However that does not correct the double vision because if your eye recedes back but its still off to the left or right that is what gives you the double vision. The only way they can correct that is by decompression surgery. That in itself creates double vision so if its not bad enough they wont do it. Over the last 2 months my double vision has gotten better but is not and will not completely go away. It then comes down to how strong of a prism will you need. 6 weeks ago I would have needed a stronger prism than now. So 2 months from now I may need a weaker one than now. So when they cost about 800 dollars a pop I can see why we should wait. Giving me the glasses now would simply be a money grab. Still feeling a bit intense but getting over it...Thanks everyone...Kathy

Hi Kathy, thanks for your last post.I'm waiting for the call that my glasses are ready...don't see that I have any choice but to get them, because I'll have to pay for them in any case. Live and learn. Fran