I am a 26 year old female with stage II papillary cancer. Two years ago I had a total thyroidectomy (with several infected lymph nodes included). I followed that up by doing the RAI 131 ablation. During the next two years my numbers, including thyroglobulin, have all been perfect. I just went in for my next scan and it came up totally clean, not sign of even a little uptake anywhere after two days of scans. However my TSH is over the roof and my thyroglobulin came back 3.26. They want to treat me with another dose of RAI 131. I am confused by that. If there was no RAI uptake in my neck or anywhere in my body how will this big dose kill anything???? The RAI couldn't find anything. Shouldn't an ultrasound be done and try to see where this cancer (like an enlarged lymph node or something is hiding) or if it could possibly normal thyroid activity due to how high my TSH is. I should have asked these questions earlier at the radiologists but I was in shock because of my clean scans and the thought of being separated from my baby. Am I just not getting this? Should I get a second opinion? They only gave me one day to decide and now I am thinking all these questions. PLEASE HELP!!!!!!!!
Talk to your endo or oncologist ASAP. You may have a variant of papillary carcinoma that doesn't take up iodine or you may have a secondary thyroid cancer (which also doesn't take iodine). There are other treatments for thyroid cancers that don't respond to I-131. Just giving you a bigger dose of an ineffective radiation won't do anything but expose you and your family to unnecessary radiation.
An ultrasound won't show anything but a PET scan might. Also ask your endo (or whomever) to check your calcitonin levels. Calcitonin levels should be at zero for you - if they are higher then they need to be looking for medullary thyroid cancer (which will not take up iodine).
Your right though, with a TSH that is "over the roof" and a thyroglobulin level like that (if it has been lower before) you have some very active thyroid tissue *somewhere* that needs to get nuked.
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