I had a TT done Aug and went back to the endo today. The surgeon led me to believe that I would need a low dose RAI for ablation of thyroid cells. After doing an ultrasound, he told me he saw several suspicious lymph nodes and I would certainly require a higher dose of RAI and perhaps more surgery...I asked if this saga ever ends, he replied that it is very treatable, but I had another YEAR of treatment to go probably. Of course he wouldn't commit to anything certain, but how could this be??? How often can they give you RAI? Does the RAI work for lymph nodes too? The pathology report showed that there was "no tumor on the surgical margins." Has anyone else had this experience? How bad is RAI? He was very lax about the low iodine diet saying I only need to avoid seafood, multivitamins with iodine and iodized salt.
I only had RAI for my graves disease. I only had the low dose I131.
Had to go on a low iodine diet two weeks before the RAI. After I took it five hours later my stomach was a little queasy and gas. Had to flush the toilet two times , eat out of paper plates and plastic silverware. Had to stay away from babies and toddlers for 3 days. No kissing
That is all I can remember. If you are getting a higher dose, you will probably have to do it a little differently.
I had a TT followed by a VERy high dose of RAI. They usually want to give you a high dose as my Dr put it do overkill! Like lady said you have to follow the rules, some Drs are very strict others.....lax. I would personally error on the side of caution. 2 weeks of LID will not kill you, so do it, it increases the chance of only having to do this once. As far as I know you can have RAI several times, so don't stress out about that. I'm due for my follow up scan next month, and I will be going on the LID just in case I may have to redo RAI. Hoping to not have any tissue, but you never know! Good luck, and just read as much as possible and be prepared, have lots of sour candy! Ask any qs you want.
thanks for the advice...I am just concerned that RAI will not be enough to zap these "suspicious" lymph nodes (since the endo said it may require MORE surgery- UGH)...the others that they removed did have papillary cancer. I am very angry that these were missed. Since I have never had RAI, is it usually more effective the first time? I have been to Whole Foods to shop for lots of salt-free products and I am prepared for the LID...I eat fairly healthy anyway, so it's just cheese and milk chocolate that I'll miss the most!
I feel for anyone who has to go through all the confusion. It seems everyone is on a difference surgery-RAI plan. How does one gauage the best thing to do? Too much RAI might be really bad, too littly might be bad. How does one really know?
Good luck to you all. I know its gutwrenching. You all sound so brave.