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Newly diagnosed/rai treatment soon

lesley1
Posts: 3
Joined: Aug 2013

Hi, I was recently diagnosed at the end of july, thyroidectomy 3 weeks ago yesterday. rai treatment next fri. I had some questions if anyone can answer. first, i keep asking my surgeron about the low iodine diet. He keeps shaking his head no. Never tells me why when all I read are people going on this before RAI. I am not on any replacement meds never was before surgery. Maybe this is why? He says my body will be starving for iodine before the treatment that is why he is waiting to put me on any replacement meds. I keep reading about getting your reports? which ones and why? what am I looking for? also, rai freaks me out. I have a 3 1/2 year old and he told me not to be around him for 2 weeks (he has only spent one night away from me. ever. and that was this past june) We have made plans for me to go to my dads house from fri. till wed. but when i get home. I don't want to do anything to jeopardize him. Information overload for me. This is all so confusing. Also, I am very very aware of my weight, and literally gained 5 lbs over night.  Woke up feet swollen, hands swollen and eyes puffy.  Like, crying jag puffy. Someone said that my tsh levels were rising. That isn't good is it? Sorry for sounding like an idiot. There is just sooo much info out there and it can all be very confusing.  Thanks for any help. Les

alapah's picture
alapah
Posts: 258
Joined: Oct 2009

Being off levothyroxine doesn't really translate to low iodine levels. Lots of docs seem to have differing opinions about the low iodine diet. My doc recommended it but with no severe adherence. but my take on it was why wouldnt i do it to the best of my abilities if there was any chance it would benefit me in killing cancerous cells. I downloaded the low iodine diet cookbook at thyca.org. I printed the single page reference sheet and carried it around. I think i did the diet for 3 weeks (was a long time ago so i forget). It is relatively easy to do, painless and could be a plus. 

TSH rising is what you need before RAI so dont be alarmed about that but let you doc know if you experience unusual or debilitating side effects from it. Shortly after RAi they put you back on levothyroxine (synthroid) but it dos take a few weeks for it to build up it to build up in your system.

lots of good info for new patients at that thyca.org site. I highly recommend it. 

Being away from your family will be rough but it is a short time in the big picture. RAI is creepy but it is an amazing targeted treatment. Hang in there - you can do it!

eileen

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