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Old 05-27-2013, 07:38 AM   #13
Linda1652 Linda1652 is offline
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Join Date: Apr 2008
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Re: Am I the Only One With Unsuppressed TSH?

I forgot to mention that RAI is not effective for eradicating thyroid cancer in the lymph nodes. Your primary was quite small, so I can truly understand their thinking.

The treatment has really evolved since I was first diagnosed in 2005. I didn't mention my sister had it in 1997. She had to be hospitalized for her first treatment. At that time, the low iodine diet prior meant eating very few items, for 6 weeks. It was total torture. Now, we basically avoid dairy for 10 days. We can eat most things that don't have salt added. They've come a long way, but I feel bad for the folks who were guinea pigs. There was a doctor who was the main advisor to the largest group of thyroid cancer patients. His big push was repeated RAI's at the largest dose possible. Can you imagine the people with the fried tear ducts and salivary glands? Finally, they stopped quoting him in that group, due to my constant argument that he did not participate in their conferences or agree with the doctors who advised at conferences. So, from the beginning, I started to question RAI,particulary when it's not effective for lymph nodes. They can tell from a person's tg level where the thyroid cancer is hiding (microscopic). With low level, that means lymph nodes. I have read about many people out there who have had repeated RAI's---which of course didn't work to lower their TG to undetectable-- because the cancer was in their lymph nodes! There are guidelines that the Doctors follow, so they can't be completely blamed. I do like how USC is thinking outside the box. You are not crazy...you are saving your salivary glands and tear ducts. I don't know if I told you my neighbor had to have surgery on her tear ducts, due to an additional RAI. The weird thing is, her endo is my husband's DR. I asked him if he would retreat me, and he said it would take a nuclear bomb to get rid of what was left in me, after the first RAI. Then, he eats his words and retreats my neighbor. I will probably never know if it did work this time, because she doesn't know her levels---ever!! Glad I could help....that is why I am here. I know what it's like at the beginning!

 
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