If you are still hyper at this point, then thyroidectomy should be considered. Agree that additional RAI is not best choice. The eye disease is difficult to manage and should be handled by an ophthalmologist with expertise in thyroid eye disease (usually a neuro-ophthalmologist and/or orbital surgeon). Sleep with elevated head of bed (or on many pillows) - that will help the am eye swelling. Use lubricants (eg lacrilube) at night to protect your eyes from drying out.
I'm so sorry you are going through this. I have graves & thyroid eye disease too. I wouldn't wish it on my worst enemy.
If you have active thyroid eye disease, please, do not have any more RAI, it will worsen you eyes. You have a complicated case due to Graves & toxic nodules. The Graves may be treated with the RAI but the toxic nodules can still be excreting thyroid hormone keeping you hyper.! Are you seeing an endocrinologist or a thyroid specialist? In my opinion you really need to be seeing a thyroid specialist. And a good opthalmologist who works with thyroid eye disease. Have you had a catscan of your eyes yet to make sure your optic nerve is ok?
I hope Dr Mark can give you some more information because it sounds like you really need some expert advice. Are you from the US.
God Bless, TJ
You are saying that after tow RAIs and almost a year after the last RAI, you are not on thyroid medication(?) Aren't they getting the RAI dose right(?) Although I have heard of up to 5 RAIs done safely - must be a tough thyroid. ;)
Thyroid eye disease, like Graves' hyperthyroidism and Hashimoto's thyroiditis, is an autoimmune disorder. It is caused by the reaction of antibodies and certain white blood cells called lymphocytes. Usually there is nothing done about TED, even if with the early signs, but to wait and watch until the hot phase is over. Although, there are things that can be done that you might already know, to help ease the symptoms of TED, however, to long to go into here.
Sleeping pills or sleeping aids, proper diet and exercise (one that fits and works for you) is the best and probably only solutions.
The sleeping aids may only be temporary but diet/exercise might be life long situations, so pick a diet and exercise program that you can live with for life, especially if weight is genetic predisposition. I only gained back half of what I lost pre RAI, where now I weigh what I should for my height, however I do watch my diet. Good luck!