Preparation for RAI (Radioactive Iodine) Therapy

hazard-poison-radioactive 2

Fast forward to mid-April 2011…… we now have a plan in place to finally do RAI. The endocrinologist explained about the LID (low iodine diet) and the requirements for isolation. I looked on the ThyCA (Thyroid Cancer Survivor’s) website for information on the LID and found a cookbook which was a lifesaver for me! I started prepping ahead by making meals and freezing them. I had to be on the LID for two weeks before receiving the RAI.   Once again I developed another sinus infection and unfortunately since I am prepping for RAI, I can’t even do my normal sinus rinses due to the ingredients in the rinse as it can cause a problem with RAI. I was feeling so horrible during this time, but at least my doc was able to give me some meds which helped to clear up the infection some.

While I was prepping to receive my RAI treatment, I was able to occupy my time with a few things while I was staying at my parents. I created a scrapbook of various newspaper clippings of all the events of the Japan Earthquake – something to remember what happened. In addition, going to the gym was another thing to keep myself busy. It was hard for me having to rely on other people, and felt like I was being a burden to my parent’s in having to take me to doctor appointments, taking me to the gym every day and so forth. To solve that problem or alleviate that a bit for them and me I went out and bought myself a bike. I am very independent and don’t like relying on other people as I like doing things for myself. It was great as I would ride my bike each morning to the gym, but it was actually another added bonus as a way in getting more exercise into my day. I loved doing those rides each morning and it was a really great way to start out the day.

Prior to receiving my radioactive iodine treatment I was able to visit with another familiar face from Misawa that is now living here in Utah. My friend, Ginger Anderton came to visit with me and we went to lunch at one of my favorite restaurants, Paradise Cafe and that really cheered me up. It felt so wonderful visiting and catching up with her and hearing of what has been happening with her family.

Another great thing that uplifted my spirits was receiving a care package from the students in the youth group before I received my RAI. Each one of them wrote me a letter explaining everything going on in their life and the things that they were learning. There are eighteen students in the group and I couldn’t have a better group of students; they are truly amazing and they teach me as well! It was such a joy reading each of their letters and I really needed that encouragement to keep moving forward in my treatment. In addition, they also sent me a variety of items from the 100 yen store. I love that place! It is the equivalent of a dollar store, but so much more; a lot more quality merchandise than you would see at dollar stores in the U.S.

Then, it was time to start the withdrawal off of my thyroid meds; at first they switched me from my Levothyroxine to Cytomel for a few weeks and then absolutely no thyroid meds whatsoever! Now the ensuing problems began when you are considered as being in a hypothyroid state which is low thyroid; it causes extreme fatigue, brain fog and pretty much an inability to really function. I woke up one morning and passed out, found myself on the floor of the bedroom; my face must have hit the dresser as my eye was bruised and I had a huge fat lip. I looked like someone had beaten me to a pulp. I passed out a few more times and was feeling really horrible and my blood pressure plummeted to very low levels as well. I was feeling so dizzy and lightheaded and my head felt like it was going to explode! I called Dr. Bentz’ nurse who suggested that I go see my PCP doc which would have been a bit hard being that my PCP is over five-thousand miles away! The alternative would be to go to the ER; however, I didn’t want to go and spend hours in the ER just for them to tell me to put a darn ice pack on my eye and lip!

The passing out continued over the next two weeks. I found myself on the floor several times a day not knowing how I got there, or even how long I was on the floor passed out. After the first incident my parents never found me and I never mentioned this to them either. Thank God it happened where there were no obstacles to cause any more injuries. Although I called the endo about it many times, he didn’t offer much help and said that it wasn’t related to the withdrawal off my meds. However, I really think it was the combination of things: being on the low-iodine-diet, the withdrawal of meds and all the changes my body was going through – my body was just in major overload and I believe was just shutting down. That was truly the most miserable two weeks of my life and it was much worse than going through the surgery. I would not wish anyone to have to go through that hypo hell ever!

I have a friend who I met from the online support group, Inspire, who recently went through RAI and she wrote a poem about our medications which I thought was pretty talented and she has allowed me to post this in my story:

Ode to My Thyroid Medication

Thyroid medication, thyroid medication
Oh how much I have missed you,
I never realized how much you did
Until the lack of my thyroid tissue.

Thyroid medication, thyroid medication
There has been too much lack,
All I have done since you’ve been gone
Is lie on my back.

Tired, brain fog, I’ve been a mess,
And a ton of other symptoms
I must confess.

You are so small
I never would have thought,
That not taking one little pill
Could make my life so distraught.

Now you are back
I’m happy to say,
So please work fast
And don’t delay.

I know it takes time
For you to do your thing,
So looking forward
To the good things you bring.

Thyroid medication, thyroid medication
I have one thing left to say,
I promise to take you
Every single day.

                                   — Gina Froment