Lorraine, I am coming up on 48 and have had a roller coaster ride with Graves for just over 10 years now.
I had nothing but trouble for 3 months while first taking PTU and MET. Terrible side effects, constant roller coaster rides with my chemistry levels. I stormed in to my endo’s office and said ENOUGH! He scheduled RAI right away. I guess that patented Graves stare, and the mood swings convinced him that dealing with me was not the way to spend his afternoon! But the story doesn’t end there.
Next friday I have finally been scheduled for a total thyroid ectomy. Strangely enough, When I had the RAI 7 years ago, I felt ok for about 2 years…since then, its been up and down. I wish I had known then what I know now and I would NEVER had agreed to the RAI, but would have pushed for surgery right off the bat.
It worsened my Thyroid Eye Disease, and as of Sept 2004, I have been in a continuous active phase with it.
I noticed one post suggesting Orbital Radiation as a treatment. Am not sure where about they are still doing it, but current research is starting to retract their opinions on it. In most cases it is totally ineffective, and in some cases, can actually make it considerably worse. Steroids as well are under question as a viable option, because typically when the steroids are stopped, the disease comes back with a bang. There is research being done right now by a group that is suggesting that early and total removal of the thyroid could actually help in reducing the severity, and longevity of the eye disease. This is the other reason why my doctor finally suggested removal. In truth, I can hardly wait, as this has to have been the worst 10 years of my life.
