Photo: Blue Ridge Mountains in North Carolina.
After a few months of treatment on Methimazole, yesterday I finally moved forward with the radioactive iodine ablation. To be honest, it was very uneventful and so far I feel ok – a bit of a sore throat and my tongue feels a little funny. Other than that, nothing major to report. . . other than being very bored since I took this week off from work.
What is radioactive iodine (RAI) ablation?
It’s a very common treatment for hyperthyroidism caused by Graves’ disease and it sounds a lot scarier than it really is. It’s radioactive iodine also called I-131 that is taken by pill or liquid. It works it’s way straight to your thyroid, since your thyroid is the only part of your body that absorbs iodine. In the course of a few weeks it destroys most of your thyroid cells, and ideally makes you hypothyroid.
You’re probably asking why would you cure one disease with another? Well, since there is no fix for Graves, and since the damage done to your thyroid is likely permanent, taking you to the other extreme is a lot easier and far less dangerous to treat. RAI is also a non-invasive way to get this done.
RAI and Thyroid Eye Disease
I’m very lucky that I do NOT have any major thyroid eye disease (TED) symptoms (bulging eyes, eyelid retraction, double vision) which are common for people who are affected by Graves’. For people with TED, RAI is not the recommended course of action as it could make TED a lot worse. In my research, I also found that RAI could cause TED for those with mild or no prior symptoms, because it stirs up the antibodies that are created by the disease making them go crazy and attack the eyes.
The uncertainty of ever having TED has caused me A LOT of anxiety. It’s something I think about everyday and something that I’m terrified of. TED is unpredictable and can occur at anytime. For some, it may never happen. For some it happens and it goes away on its own. For others it happens and they have to wait until the eye disease settles down before corrective surgery can be done.
I’ve been coping with this by trying to remain in the present and taking things one day at time. But this made my decision to move forward with RAI very difficult. I was very, very nervous (I still am) going into it as I currently have very mild eye symptoms. Prior to making my decision, I went to Bascom Palmer and was examined by a neuro-ophthalmologist who said he saw no reason not to do RAI.
Prior to moving forward with RAI, I came across a study on taking Prednisone after RAI treatment to prevent TED. I shared this with my doctor, and he reluctantly agreed to prescribe it to me. Even if it does not work, it was the only thing that helped me move forward with RAI. I started Prednisone today and will continue for 6 weeks.
What to expect during RAI treatment
With all my hormone levels in range I scheduled the appointment at the Florida campus at Cleveland Clinc. Five days prior, I stopped taking Methimazole, as this could affect the thyroid from absorbing the iodine and the day before, I went for some lab work to confirm I wasn’t pregnant.
The “day of” was very simple. I could not eat 4 hours prior to taking the pill, and had to wait two hours after taking the pill before I could eat again. Because you flush the radiation out of your body through your saliva, sweat and other bodily fluids it’s important to follow all safety precautions. Note that safety precautions vary and depend on the total dosage you are given. I found a lot of conflicting information online. But the following are the instructions that the nurse gave me the “day of.” I was given 15mci, which is the highest dosage for non-cancer patients, so if you’re given the same dosage, you may find this helpful:
- Stay at least six feet away from all people for at least two weeks, this applies especially during the first week. If you have to get close, limit this time. Government recommendations say you should not share your bed with your loved one, kiss or exchange bodily fluids for at least 11 days.
- Flush the toilet twice after using it. (Use a separate bathroom if possible.)
- Shower and wash your hair often.
- Wash your sheets and clothes separately every two days.
- Cover your phone, iPad, keyboard and other electronics that you frequently use with Saran Wrap (she’s clocked phones with radiation on it.)
- Keep your distance from all children for at least two weeks. Quick hugs are ok so long as they are not near your neck.
- Wash your dishes separately, better yet, buy disposable plates, cups and utensils.
- Do not prepare food for your loved ones.
- Throw away your toothbrush after the two weeks.
- Keep the surface areas that you touch clean.
- Drink plenty of water for the next two weeks.
After she went over all safety precautions, she stepped out of the room (because she was pregnant) and another nurse came in with a metal container the size of a cup. She handed me a bottle of water, opened the metal container and pulled out a little glass vial with a little pill in it. She told me to “drink” the pill out of the glass vial so I wouldn’t touch it. I swallowed it, and was instructed not to eat for another two hours, and that I could take Advil if I got a sore throat.
And that’s it. I was sent home. I’ll continue to report my progress after RAI here. The doctor said I may go hyper again starting next week, but by the sixth week, if it worked, I should be hypo. Stay tuned.
Please share any RAI stories by commenting below.I am not a doctor and the content on this blog is not medical advice. This is simply my experience with Graves Disease, and all thoughts expressed on this blog are my opinions. Please consult a doctor if you think you have Graves Disease or prior to taking any action that may affect your outcome with Graves Disease. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this website.