Dear Arielle

This message is for Arielle of Illinois... who will soon take her first radioactive Iodine treatment. She had asked some questions about my I131, and since I can't find her email or blog address, this post is her answer.

The first and most important thing I want to tell you is that if you have any questions about your treatment, call your endocrinologist's office and ask them. Make a list and leave a long message. You have a right to know about all aspects of your treatment, including what to expect. Don't think that it will make you look silly for not knowing -- really they're the silly ones for not telling you important things from the start.

I say that because my RAI treatment was different from what you will be expecting because in Oklahoma, ablation doses can be given on an outpatient basis. I stayed in my apartment in an extra bedroom, away from my husband and the cat. You mention that you're going to be hospitalized for your ablation dose; their rules will more than likely be more strict than mine were. (That's why it's a good idea to go ahead and ask them what you should expect.)

I'm supposed to be on the low iodine diet two weeks before the RAI and the week of the treatment. I'll stop taking my short-acting thyroid medication when I start the diet that I lovingly refer to as 'sticks and twigs'.

If your treatment is like mine, your first "dose" will be a scanning dose. Mine was 4 millicuries, which is just a spit in the bucket compared to the ablation dose (my first one was 100 millicuries, and I think the next one will be 200 mci.). I'll still be able to work until I get the ablation dose, but I'll have to stay away from pregnant women, babies, and my cat for five or six days. That's my best bet why you have to be away from your kids as of the 17th... and why you'll be hospitalized on the 22nd. (My test dose is on September 11th, and I'll return on the 13th for my scan and ablation dosing.) In short, you might be getting the small "scan" dose on the 17th, and your ablation dose on the 22nd... but like I keep saying, just call and ask them.

Our ablation experiences will be different if you'll be hospitalized for yours. They will want you to take multiple showers each day and clean your own bathroom, since the radiation will get out of your system through your sweat, saliva, and urine... probably breast milk, too, since you'll have to, as you so eloquently put it, "pump and dump". You won't be able to have any visitors for several days, so go ahead and make a list of people who can call you to entertain you. You'll have a television, but that gets old after a while. If you bring books or magazines, there's a chance they'll make you throw them away when you are discharged from the hospital... which is why it's a good idea to call your endocrinologist and ask what you can expect. If they won't let you take magazines home, they probably won't let you take a cell phone or your laptop, either. I don't know if they'll let you take your pump - or maybe the hospital has one you can use? ... just ask them what they expect you to do in a room for several days by yourself.

That was probably the hardest part for me -- just being by myself. I'm not exactly a social butterfly... but I have a social job, and The Hater and I really like hanging out together. Being alone in a room got old. Bleh.

Since you take the RAI by mouth, some of the radiation can get into your salivary glands. I've read some poor research saying that you should frequently eat sour candy to help excrete the radiation from your salivary glands... I had lemon drops and sour gum that I tried to nibble on for a few days. You should also drink lots of water to try to flush it from your system.

I didn't know what to expect as far as the radiation went... but it was really not halfway as exciting as I thought it would be. Sometimes in the mornings I'd wake up and have a funky taste in my mouth, but it would generally go away after I brushed my teeth and ate something. I had only a little nausea, but it was super minimal, to a point where I could will it away and never actually threw up. Most people don't have any nausea or problems with it.

Let me know if you have any other questions or need anything!

PS: Have you been to the thyroid cancer webpage? They have some information about what you can expect with a hospitalized RAI, but again I'd like to stress that you should ask your endocrinologist about what you can expect. We pay them enough, the least they can do is answer some questions!

PPS: I was really confused about my first RAI treatment, too. This is a link to a post I wrote back in May during my first RAI treatment. It's about how crazy it was that I never knew what to expect. Just know you're not alone in your bewilderment...

PPS: You're officially EMPOWERED. Go forth and make a list so that your foggy brain doesn't get lost when you ask your endocrinologist those questions! Make them earn that copay...