Good for you! We need to start standing up for our rights and let them know it is our bodies-we make the decisions. If they had to go through the RAI and have the side effects, maybe they would think twice. Hope you start feeling better on the lower dose and research all you can.

I second that. Good for you! Why are most docs so hung up on RAI anyway? My endo (who's leaving) is from Africa, but did most of his training in Europe and told me from the beginning that I had more than 1 option. He gave me the pro's and con's of each. In Europe the primary treatment is TT, they rarely do RAI there. Here it sometimes feels like they push it as the only option, I don't get it. Unless it has to do with cost.

Hi Snippy,
I still think you are on a dose too high for you at this point. You really need to push for the "free" testing when you go back. The doc needs to see just where you are in the range and if your levels are too low, you are probably over medicated.The cheapest route is the RAI in the U.S. They figure they don't have to monitor closely, like with Graves and that a patient is safer hypo than hyper.. but if a doc keeps you over medicated on anti thyroid meds, they will keep you under medicated on replacement for sure. Then you have all these symptoms and they say,"oh it's not your thyroid now." I've heard this so many times before. It's sad.. Don't let them talk you into that. Do you have any labs that show what your levels were when on different doses?

OK went to the medical clinic today because my legs are giving me such a fit. Since i can't seem to get the endo clinic to listen to me. Today they seem to think I was setting up myalgia because they said it went with the graves. My cbc and bmt was good so he seems to think it is my thyroid medicine. He told me to go with the lower dose she put me on today and tale naproxen twice a day cause i had to take the meds. So I'm just screwed. When i go back to UAB in July I will have a new doc and we are gonna sert down and have a heart to heart talk.

I have been on 50,000 units of vitamin D for a month now. Other than my hips and bursitis most of my pain is on the lower part of my legs. They just give out throughout the day. About 4 days after taking a dose the pain comes back strong. It feels like I should be taking it sooner. One more pill and they are lowering it to 2000iu. I am curious to see what will happen. My test results were 19

I agree with brans....I think you are overmedicated

I agree with all here. RAI is lower cost and safer for the doctors and I was told of the other options but discouraged and told RAI was the best for me. My gut instinct was to walk out and oh how I wished I had listened. To late now and the nightmare has begun.

I do not intend on going the RAI route. I will fight tooth and nail here if I have to. We talked bout this befor when you don't have insurance it is hard to fight back ellymae

Don't let it be a nightmare elly.If you stay on top of your labs and know what they mean, you won't sink too low, hopefully. It's just that docs will talk you into this if you don't research it first and see how it can be very iffy with the wrong doc. I think a doc who would try to talk you into this isn't the right doc anyway. They have to listen to what treatment route the patient wants or you fire them and on to the next like most of us have done. Of course it's quite hard if you don't have insurance like Snippy, but she must have enough anti thyroid meds to carry her through for a long time. She can split those babies and have more than what she needs.LOL!

I go back to the endo July 20 and I'm gonna make sure I get a three month supply at her dosager and then baby I'M ON MY OWN.

yes, If you don't have insurance-then you don't get half the tests that are needed. I had been going to a sliding-scale income clinic and seeing an endo-whom told me there was not relation between Graves' and ocular diseases.!! When I went back last time to see her(forced to) They said did you know she is no longer here-dont know where she went! so I had to see a regular md from India! Won't go back now.

We'll ellymae I'm going to university of Alabama under a program for people with no insurance but they are so frigging big there. I got a letter the other day and the doc I was seeing will be gone July and so I will be starting over. Maybe this one will be Carter but I doubt it.

I am also very glad I didn't get radioactive iodine treatment or surgery for my Graves' disease, and if I understand correctly, those treatments are no longer being recommended for patients with Graves' Ophthalmology, like I have.

One thing I would think would help to look into, is research studies that may be happening in your area.

In any case, don't submit to anything that could do permanent damage without checking out all alternatives first. That said, I really hate taking the Methimazole, but at least it is something that I know won't really hurt me if I fail to take it once or twice. [I am on one 5mg tablet per day 6 days per week.]