• I am wondering what to expect to feel like during my RAI treatment isolation days? Do I still follow the low iodine diet ?

    Asked by Grammyof3 on Friday, January 24, 2014

    I am wondering what to expect to feel like during my RAI treatment isolation days? Do I still follow the low iodine diet ?

    8 Answers from the Community

    8 answers
    • donnatu9122's Avatar

      Everyone is just a little different. I was just plain tired. I rested and then rested some more. NO diet to follow. My neck swelled Quite a bit, but was not uncomfortable. I wanted to eat foods that were off my list from the diet. I lost all sense of taste by day three. It took three weeks for the tastes to gradually return. The hardest part was staying away from family and my kitty cat. Although, it was summer time and the weather was perfect. I spent the three days outside in a screened in tent, in my PJ's, with a lot to drink. You need to flush the RAI out of you.

      almost 7 years ago
    • jake0900's Avatar

      I stayed with the low iodine diet throughout. The first time, I was in isolation in the hospital, but that was back in 2002 when they wouldn't let you do it at home. The second time was at home and it was for 5 days. Drink lots of water to help flush it out faster. Flush the toilet twice to make sure it all goes down the drain. Just rest, also either get sour balls to suck on or chew gum, keep the salivary glands working so they don't stop. I hope this helps. As donnatu9122 stated, everyone is different, so you will be able to figure out what's best for you. I made up some dinners prior to the RAI treatment so I could just pop them in the oven or microwave so I didn't spend much time in the kitchen. I also had a friend take my cat because the cat I had at the time loved to sleep with me and I didn't want to take any chances with him. Good luck!

      almost 7 years ago
    • cam32505's Avatar

      As soon as I receive the therapeutic dose of rai, I didn't have to stay on the diet. Of course, by then everything tastes funny anyway. I only received 50 mcg of rai, which I think is a low dose. I only had to stay away for a couple of days, so a good time to read, rest, watch TV. It will take some time for the taste to come back. I was back at work eating a sour apple one day when I commented about how sour the apple tasted, then I realized I could taste again.

      almost 7 years ago
    • spunky's Avatar

      I did not have to follow the low iodine diet. But I received a very high dose radiation, over 200 (whatever the dosage is). I ended up with no appettite. for about 5 days. Made myself eat. Was lonely. I'm used to having the grandkids around. Couldn't cuddle the dog. Daughter-in-law brought the kids over and they stood on the front lawn and blew me kisses! Suck on those hard sour candys a lot. It keeps your salivary glands working. I did not and now have dry mouth, which has led to poor dental checkups. Other than loss of appetite, I felt tired. Read a lot. Layed on couch and watched TV. Kept telling myself, this too, shall pass!

      almost 7 years ago
    • Carolina18's Avatar

      I did not have any great side effects from the RAI treatment. I did everything I was instructed to do. I also remained on the LID for 4 or 5 more days until I went back for my post scan. I did not like the idea of the isolation, but I was willing to do whatever it took to maximize the results. You can do it.

      almost 7 years ago
    • Tracy's Avatar

      I had it in 2005 and just had a restful weekend reading and sleeping away from family in my bedroom. The reason you are doing the low iodine is so that any thyroid cells (which love iodine) will suck up the radioactive iodine that you are given. I did not have to follow a special diet while having the treatment itself but I think that may be up to your doctor.
      When I had this treatment in the mid 1970's it was experimental. I was placed behind a big lead shield for 3 days and tested with a geiger counter before I was allowed out. It was a very strange experience for a teenager.
      This treatment has improved so much in 40 years - Tracy

      almost 7 years ago
    • Corri's Avatar

      The first time I did RAI, the doctor gave my Thyrogen shots (which are expensive, and the insurance only covered part). I was probably overzealous, but prepared foods ahead of time (from the downloadable cookbook on ThyCa). I set up my bedroom with a small table so I could eat, and had a pile of books to read. It was a great weekend off!

      The second time, I had changed doctors (long story, way better doctor!), and they wanted me to do the whole 6 week process (diet and off my meds). The diet wasn't bad at all. Really. Again, I prepared foods ahead of time, because I read that most people are very tired. I didn't want to risk eating something quick because I was too tired to cook. By the time I did the RAI, I was sleeping 18+ hours a day, couldn't think and actually gave up driving. I began to get depressed (being tired does that to me). However, the doctor was able to get a very accurate reading of the left-over thyroid cells and knows how to continue my treatment.

      during treatment, my doctor (both times) said to stay on the diet, just to be sure.
      Foods that I really enjoyed were: sweetened nuts, spicy nuts, fresh ground peanutbutter (at Fred Meyer if you have that near you. Winco does it too). jambalaya, meatloaf (I made this up and used muffin tins to cook it in), chicken soup, what are those egg white cookies--those are amazing! I made bread and fried slices in a little olive oil spray and made toast every morning.

      No milk products--even soy, almond, and the others have carnageenan in them (seaweed). That part was difficult, because I need something in my coffee. Cocoanut milk worked.

      If you're able to prepare a little ahead of time, it won't be bad. Really. And its worth it for an accurate reading. (there's a spot on my liver. I wouldn't have known if I had not been following the diet.)
      Best of luck to you!

      almost 7 years ago
    • Corri's Avatar

      I want to echo the fluid intake recommendations. If you don't drink enough, you could lose salivary gland function. I drank a case of water in two days. Another case in the following three. Plus orange juice. (Watch labels)
      Lots and lots of water. My mother lost salivary function. She was miserable. It doesn't return once it's gone, and it's the radiation that does it.

      almost 7 years ago

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