My TED went from mild (only noticeable to me and my specialists and immediate family members), to moderate the same week I went hypO six months after RAI. I posted on here that week, because I was scared and feeling awful. Kimberly told me:
Hello - There was a study done in 2005 out of the UK that concluded that for patients with minimally active TED, RAI was *not* associated with a worsening of symptoms *if* T4 was administered early to prevent hypothyroidism. To my knowledge, this study hasn't been replicated, but it will be interesting to see if you receive other responses from people who have had this same experience.
I was almost annoyed at first (since my endocrinologist never started me on T4 - why would he? I went from euthyroid/slightly hyper to seriously hypo within a week or two, no warning, very sudden) but later appreciated her comment. I think Bobbi chimed in that this research was never replicated or something to that effect. Either way, MY TED became quite bad the same week I went hypo. Whether or not the two were related…we'll never know but I suspect they were.
I think your best bet is to see a neuro-ophthalmologist or an ophthalmologist who treats TED before you make a decision on RAI. Your endocrinologist should not be the one making decisions about your eyes. Pain and pressure can be just as serious as external swelling where TED is concerned. Your endo and ophthalmologist need to be in communication about your eyes and what, if anything, RAI could do. For me, the RAI had no effect on my eyes but the wacky thyroid levels did.
As for the RAI, I have a small dog who went to his sitter for a long weekend (Friday morning to Monday evening) as I had my RAI on a Friday afternoon. Can you do this instead of going to a hotel? Either way, it might be a nice getaway to spend a weekend on someone else's maid service! But yes, you definitely don't want your cats around you for a few days. Just send them to a sitter or nice boarding facility (I sweat - the place my dog is going this weekend while I'm at an out-of-state wedding is nicer than my hotel!). Or splurge and let them stay at home while you go to a swanky hotel.
What the patient probably meant is that your endo is good at determining how much RAI to administer in order to kill your thyroid…but I wouldn't listen to other patients in that arena. It's too vague. My endocrinologist's office was licensed to administer nuclear medicine, including RAI. However, I was working for the hospital and my insurance required me to go to the hospital's nuclear medicine department to take the pill. It is not uncommon for endocrinologists' offices to administer the RAI, but I was under the impression that - if I had done it at the office - a nuclear medicine specialist would be the one actually handing me the pill, not my endo. Ablation is not really a procedure - it's the act of taking a capsule of I-131 to destroy the thyroid tissue. By the way, I received 10 mCi (considered a small dose) and it did the trick. I am 18 months post-RAI and have no remaining thyroid tissue.
When you say you are in pain, are you referring to more than your eyes? RAI was painless for me except for the strep throat feeling that started on day two post-RAI and lasted about 36 hours. For that, I just took Tylenol and drank lots of broth, tea, and sucked on hard candies round-the-clock. No biggie at all.
I'm not at all familiar with how or if Graves reoccurs after RAI. I know this is some disagreement about whether or not we have Graves once we are treated, but I prefer to tell people I'm in the Graves club rather than the hypothyroid club to avoid as much judgement as it seems nowadays everyone likes the blame their laziness and obesity on “a thyroid problem.”