beach45
    Post count: 178

    I know what you are saying Gatorgirly. I’m careful only because on some other forums people talk like certain things are gospel and I think all of this Graves and TED experience is also based on personal experience and there are studies done out there and also on what each individual’s endocrinologist / doctor feels about how to go about this or their experiences with Graves or TED. I have been to four endocrinologists, one internist, ENT surgeon who would have done a TT for me, and a Integrative doctor (who is also a regular MD),and they all had somewhat differing opinions on Graves and/or TED treatment based on their experiences in their practices and what they learned through the years. Similar as there are standards yet different. Also the thyroid eye doctor who prior was an internist and he has a wealth of knowledge as I was kind of surprised yet he specializes in TED also so should know! Anyway, I always now back myself up with medical journals or what the AACE or ATA says because dealing with so many doctors myself, I find this works with them. So why I always also like what you are saying, I tell by experience and even if the research shows xyz, we can each experience what goes on our journeys differently. I have discussed this to the max with these doctors as when they see me coming they hide I have so many questions yet this is the only way I learn having an autoimmune disease which has affected my eyes also. Another practitioner said to me, your doctors don’t offer to you what can possibly happen post RAI or what you need to do like the hard candy thing or what happens as far as when you get signs of hypothyroid(?); no I say, I found out for myself either asking tons of questions or researching sites based on other’s experiences. In all my doctor visit experiences with this disease, sadly, no one prepped me very well and I’m still asking questions. Well in my mother’s day it was just a “trust me” thing with the doctor and just that things should be fine and go on your way and deal with whatever after! I kind of like to know why to be prepared and forums like this one is very beneficial to me and people like gatorgirly and so many others I too have learned a lot from and I keep learning! I too like to cover myself also as I’m not an MD. Only my experiences….beach