Thyroid Cancer and Me Part 2 – RAI Treatment

RAI – Radioactive Iodine – treatment is a common way of treating Thyroid cancer and used after surgery to kill any left over thyroid tissue, which is what my situation is. I had a total thyroidectomy in November, but it wasn’t enough. I ended up needing the radiation treatment too. It wasn’t fun, but it was manageable. So, let’s start from the beginning.

About 2-3 weeks before taking the RAI pill, to prepare the body to make the most of the radioactive iodine, I am on a diet. This Low Iodine Diet is one of the most complicated diets out there. It restricts the intake of iodine which is found in salt (except non iodized salt), which is in EVERYTHING! And it restricts the intake of dairy. Grocery shopping takes 3 hours now because I stop and read every label and I mean this very literally. I’m used to hot pockets and pizza which I cannot have for 3 weeks. Luckily, I found 1 recipe that I really enjoy – a fajita recipe that I am going to eat a lot. I make my own salad dressing and pasta salad. (Try the Low Iodine Cookbook for here - http://www.thyca.org/Cookbook.pdf).

I’m a junk food-aholic. I love ice cream and chocolate – but it’s off limits. I am not a cook, and it’s difficult learning how to cook in such a short time frame (meaning tonight because I’m starving). One of the first challenges during the initial weekend on the diet is a catered engagement party and a bridal shower – both of which I can eat nothing. It is tempting and I complain a lot (thank you to my friends and family who put up with me!). And the bridal shower is embarrassing because I am the pale skinny quiet girl who isn’t eating the nice delicious food. Goodness knows what the girls (none of whom I know) think of me by the end of the afternoon. For someone who enjoys eating, this diet is torture. My energy level is dropping, my brain is getting foggy (I also stop taking my Thyroid hormone to force the body into hypothyroidism which is no fun at all). So the whole situation stinks and is difficult for others to understand.

On Monday, 5 days before I’m to take the radiation, I get blood work done. My doctor has to make sure my “levels” are low enough for the treatment. I’m not sure what levels he’s talking about, I just know I’ve tried my hardest not to have iodine, so I will be very very mad if my “levels” aren’t right. Plus, I’ve already filled out the medical leave paper work at my office to take the allotted time off for the RAI treatment and I’m not sure what to do if I have to reschedule. So I go to the lab in the morning and by the end of the day my Endocrinologist calls to tell me my levels are …(drum roll please) at the right level. Everything can go as planned.

Friday (the day of) I’m taking a half day at work. I arrive at the hospital to receive the radiation pill. There’s another girl here about my age and we talk. This is her second time doing the RAI, her thyroid cancer came back a little. The lab tech reassures me he doesn’t see many patients of my Endocrinologist come back a second time. The other woman wasn’t a patient of my doctor’s during her first RAI treatment, but now she is. Then I find out I am taking not one radioactive pill, but two. Yes two! When my Endocrinologist arrives the technician gets the other woman’s pill first. It’s in a weird lead space capsule thing and they put it in one of those plastic pill cups because it’s dangerous to touch with the hands, yet ok to be swallowed. I take both pills. My doctor warns there may be some nausea, my taste buds might go a little dead, and of possible swelling in the neck because the radiation comes through the saliva glands.

Oh! Did I mention that I’m in isolation for a week? Yep! Another huge chunk of time away from work and people – everyone – at least 6 feet at all times. But I get to do this at home and not in the hospital.

Once I take the pills I head home and call my folks to tell them I feel fine, which I do. I’m surprised. 24 hours later though I’m singing a different song. I feel awful. All I want to do is sleep. And that’s all I do – for 4 days. I sleep through the Superbowl. The only way I eat is when my poor mother comes over and makes me food. By Tuesday I’m also drinking Ensure, but that’s all I do because I just can’t do anything else. Monday I get my first scan. I’m exhausted. A shower wears me out and I fall asleep on the way to the hospital. Thank goodness my mom is driving. The scan takes forever and it’s a little scary. Parts of the scanner come very close to my face and stay there for about 20 minutes.

4 days later I finally feel alright to do some of the things I had planned for my time away from work. I planned a lot of tasks not knowing the radiation would wipe me out. No one prepared me for the complete exhaustion and sickness I would feel. But thankfully it’s over now and I re-arrange my closet.

Another odd side effect I’m discovering is that my taste buds are a little stunned or asleep or something. This is disappointing considering the bland diet I was just on. I was excited about the idea of being able to eat my favorite foods again only to find that I cannot fully taste their deliciousness. Finally on the last day of isolation I have another scan. This one is more annoying because I am not as tired and begin to get anxious.

Once the 7 days of isolation are over I clean everything, particularly the kitchen, which I share with a roommate. I used gloves to reduce contaminating things (even though my doctor said it was ok if I touched something and then my roommate touched it). I do a thorough cleaning then go out with a friend to celebrate. And that is the end of that.

I have a checkup at the beginning of April – 4 and ½ months after my surgery. So who knows what the future holds, but I will definitely update you all when I find out.

Thanks for reading.

Have you had to take the RAI treatment? Are you about to do it? On the Low Iodine Diet? Tell me your stories!

This post is dedicated to Maria a mom of 2 who is about to have her surgery and then receive the RAI treatment. Good luck my new friend and keep us posted!

“Basically, I'm for anything that gets you through the night - be it prayer, tranquilizers or a bottle of Jack Daniels.” – Frank Sinatra
So may the prayers, tranquilizers and JD be with you and see you next time.


Anonymous said...


Hi! I just got home from the hospital. I am glad to have that bad stuff out of my body!! I will write more later. Just wanted to let you know all went well.


Anonymous said...

Hang in there girl. I have been treated twice with RAI therapy. The first time I spent 3 days in the hospital and 5 days the second time, all in isolation. You were fortunate to be home! My biggest complaint is my taste buds. They are totally fried, food taste like cardboard. Let me know if I can help in any way.

thyroid cancer said...

I and 3 other family members that have low thyroid and all have found this works best. However at this time we are unable to get any and have been put on Synthroid.