Freaked Out By Endo

I had my TT June 2007 papillary 3cm well contained no sign of spread. Afraid of RAI and the effects and with the opinion of my surgeon that I was low risk etc did not do RAI. So there may be residual thy tissue. My endo has been playing with my meds and allowing me to initially to take ,25 cytomel and 100 synthyroid. My levels were fine last appointment but he wanted me off the T3 and tols me just to take synthroid . I went for blood work and got a call from my endo saying that the tests show my thyroid levels are three times what they should be that I have been on insufficent meds and that I have not been supressed. He told me that this could be a reoccurrence or the thyroid trying to regenerate due to not being suppressed . He said sorry to be the bearer of bad news and that he was referring me for RAI .   Can anyone help me understand this ? Why or how would it change in two months ?

Take a deep breath and do not assume the worst!  RAI is nothing to be scared of and I would not hesitate for a minute to have it done again.  Like all cancer (and any other disease) things can change in a minute.  However, the good news is that it sounds like any change has been caught very quickly.  Just keep focusing on the fact that thyroid cancer is the most treatable form of cancer.  However, at the end of the day......it IS cancer!  So, get your treatment as soon as possible and you should be fine!

I agree whole heartedly with the last poster (gj4csmom). Have the RAI. I know two other folks (besides myself) who have had it and we all just complain about the diet and being a little tired (from the hypo -- not the RAI). It's an inconvenient piece-of-cake that will most likely alleviate any problems down the road. The RAI part gave me no effects whatsoever. Wouldn't have known it was RAI unless someone proved it on paper. The LID and isolation is a logistical pain, but is a pebble on the beach compared to what the benefits are. The 99% of the rest of the cancer world patients who would "kill" to have the almost guaranteed solution to rid themselves of their cancer like we have with RAI. And without the physical effects of chemotherapy (!!) For three weeks I couldn't eat a lot of usual food, I stayed a little isolated for three days (and careful for a week), and now I'm getting stronger daily as I get un-hypo. It's worth the small effort. The RAI will wipeout any remaining thyroid/cancer thingees and you'll have finished the job. I'm surprised that your endo let you skip it the first time. My tough love suggestion -- take your medicine and get better. You won't regret it. RedStar

I just had another call from my endo saying that the lab has made a mistake in the blood work and that my TG was NOT 350 but 35. As he said this is a little high but not in the crisis range. He increased my  throid hormone meds and told me to come back in August and have new blood work done then. So I am now releived that this is not the crisis he thought and that if I do chose to have the RAI then I can likely use throgen shots etc. I had a meeting with my surgeon yesterday . Unlike most surgeons he is very good at explaining matters and calmed me down .