Hi all, please forgive me as I've not been online for a while, I'm, having a third or 4th dose of radioiodine on the 16 of December, my consultant told me if I don't respond to radioiodine this time he will not treat me until my cancers get bigger. I'm a bit confused as why he wants to stop giving me radioiodine if that's the only treatment for my cancer and why would he let it get larger, he has already told me that the mets in both lungs are incurable,i seem to have put on weight and have type diabetes and this low iodine diet gets me down, he also kept my thyroxine dose 50mgs higher than my normal dose of 200mgs which I have been 250mg for nearly a year, I am just off all thyroid hormone until after my treatment, trying to remain positive but finding it a little depressing..
Hi Tomo, sorry to read your post. I have no direct experience of RAI to help you as my variant doesn't respond to it but hopefully others with more relevant experience will pop on and help.
It does sound confusing (and I'm sure very worrying for you) as to why your consultant would want to wait until it's larger, could you phone and get more clarity from him on that? Or from your CNS? Altering your thyroxin dose and now of course being off it altogether will make you feel awful too. I would definitely ring for a better explanation. If they can give you clearer reasons for postponing the RAI, then it might help you put up with what you're having to go through to get there.
Medullary Thyroid cancer dx May 2023
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