Post count: 326

    I’m not an expert, just a patient who went through RAI. My uptake scan was done at my endocrinologist’s office. There is a nuclear medicine department within the office, since the facility houses internal medicine, endocrinology, rheumatology, infusion therapy, laboratory, physical therapy, sleep studies, and of course, radiology (under which nuclear medicine falls). So although you say this is highly unlikely, that was the case at this particular office. It was like a mini hospital. The only reason I couldn’t have my RAI there was because of my insurance – I worked for the hospital and my endocrinologist’s office was not affiliated with the hospital, although the physicians had practicing rights there (you as a nurse will understand this, others may not – semantics). As we know, medicine is practiced differently all over the country. I think you are the one who posted that your oculofacial surgeon ran all of your TED tests, when usually a neuro-ophthalmologist does that. In Florida, where the RAI was given, I had my choice between having it at my endo’s office or the hospital. There wasn’t much of a choice between paying out-of-pocket and letting insurance cover it, but it was a choice nonetheless. In Florida, I had a neuro-ophthalmologist. Here in MA, I do not. My TED is stable and in the cold phase, so my surgeon is handling all testing leading up to my OD.

    My endocrinologist recommended 10 mCi to the nuclear radiologist. The radiologist refused to give me anything until he spent two hours reviewing my full medical history. It was frustrating and a long wait in the hospital, but I’m glad he reviewed everything before giving me the pill that would destroy my thyroid. Like you said, there was probably a bit of discussion between he and my endo during those multiple phone calls back and forth. My endo felt I only needed a small dose based on my uptake results, and the radiologist agreed in the end.

    I don’t think I said anything about a standard of care for people with TED. I only gave my personal experience. I forgot to mention that I did take prednisone a few days before and after RAI to reduce the likelihood of a sudden TED onset, and it worked for that time period. My TED was very mild before RAI, and that’s why my team decided to proceed. I did not want surgery for a multitude of reasons, and remission via ATDs was not happening – we tried.

    As I stated, there is no evidence that suggests being hypo caused me to develop moderate TED. Also as stated, I felt it did because the timing was simply just too close in my case. Again, I’m a patient and not a doctor, but I know my body. The same week I started feeling all those hypo symptoms was the same week my eyes swelled out of my head with extreme pain. I got labs done that week confirming hypo and also had an MRI that week confirming TED.

    I’m offering VanIsleGal my personal experience as that’s the best I can do without being a physician. I know for me personally, this board has provided first-hand knowledge of Graves and related procedures and issues that my physicians can talk to me about, but not having lived it, they don’t always provide the entire scenario. For example, no one from the endo’s office or the hospital’s nuclear med dept ever told me to suck on hard candies after RAI, but multiple people on here did. It helped a lot. And no one from my surgeon’s office told me about sleeping with my head elevated after surgery, but I think it was you and someone else who did.

    I didn’t think we needed to provide full disclosure in every post that we are speaking from experience rather than medical expertise, but here is that disclosure: I am speaking from experience rather than medical expertise.

    I hope that Kimberly will provide the study she referenced in my post from last summer.