Anonymous
Hi there. I’m not a facilitator, but I just went through RAI so I might be able to talk it a bit. You may or maynot (depending on your doctor) be told to go on a “low iodine” diet for two weeks prior to the procedure. I was, and although it was a bit limiting on what you could eat, it certainly was do-able. I then had a radioactive uptake test which is a two part test that is used to determine what the “best” dose for you of radioactive iodine is. There is some fasting involved with the test which gets tough when you are hyper and hungry all of the time, but again it is certainly do-able. For the test, you will be given a very LOW dose of a slightly different type of radioactive iodine (not I131, but a similar compound). This allows for equipment to track the uptake of your thyroid gland and to measure exactly what size your gland is and what the tissue makeup is (it is my understanding that most of us with Graves have alot of pretty smooth tissue in our thyroid gland–the gland may be larger than normal but it is “uniform” in its largeness). From this information, and from your history (whether or not you have ever been on anti-thyroid hormone drugs) your dose of RAI is figured. Most Graves patients have a pretty high uptake which means that the thyroid gland sucks up iodine very quickly from the body. This is beneficial for the procedure b/c it allows a smaller dose of RAI to be used. If you do not have a very high uptake, then your dose will be larger (my uptake was relatively slow and my gland was relatively large so I recieved a much higher dose of RAI than the “typical” graves patient). The uptake test is a very important tool for doctors to use and allows them to treat you most effectively with as little radioactive iodine as possible. I believe that the uptake test must be done within 1 month of the RAI procedure (mine was done the day before b/c I had to travel 3 1/2 hours to the medical center from my home so I had it all done at the same time).
After your dose is figured, then the nuclear medicine doctor will talk with you about what your dose is and what the restrictions will be for you to be around other people for several days after the procedure. The larger the dose, the more restrictions for more days. At my medical center the equation was 9 feet for 20 minutes in 24 hours for X amount of days (depending on the dose). That means that you cannot be within 9 feet of anyone for more than 20 minutes in 24 hours for the specified amount of days which is dependent on your dose. If you have small children or someone close to you is pregnant, then there are additional restrictions. I was told to spend 48 hours in isolation while the radioactive iodine was “systemic” b/c that is when you are shedding it into your sweat, saliva and urine. After 48 hours, then I could move back home but I had quite a few restrictions b/c of the age of my children. If you live alone, or don’t have young children in the house it really isn’t a big deal. Even with young kids, I just made sure that they understood what was going on and stayed consistent with the rules and they really got along pretty well with it. I also had strict instructions as to what and when I could eat or drink for 24 hours after the procedure to maximize what went to my thyroid and minimize what was “lost in my system”. After 24 hours I was told to drink ALOT of water to expel what was still circulating from my body to safeguard my body outside of my thyroid gland.
Bobbi mentioned a “leaking of hormone” about a week following the procedure and I think that is a very important thing to be aware of (especially since you have not been on medicine for a while). Your thyroid gland stores extra hormone and depending on your gland, there can be quite a bit stored. Please ask your doctor about this so that you can be properly prepared, and your doctor is sure that you can physically withstand the hormone leaking safely. I had some trouble with this. I was a very extreme case, but please ask your doctor about this in detail to make sure that you are prepared and in a good place physically to withstand the exacerbated hyper thyroid that you could have following the procedure. As Bobbi said, that typically only lasts a few days. My case was extreme and please do not think that this is necessarily going to happen to you, but mine lasted for more than 6 weeks. You did not mention the “state of your health” in your email, so I don’t know how stable you are right now. I do think that it is important to be as physically stable as possible going into the procedure; and that may entail taking anti-thyroid hormone medicine for several months prior to going off of the medicine in order to have the procedure. It is very important to SET YOURSELF UP FOR SUCCESS with this procedure.
I found out yesterday (9 weeks post procedure) that my gland is in fact dying off and my levels have come way down. That is a tremendous relief for me.
I would suggest asking your doctor to check your thyroid hormone levels in addition to doing the uptake test prior to the RAI to make sure that you know “the whole story” going into the procedure. There is nothing that is 100% in medicine, so there is a risk to everything but RAI is a good option for most Graves patients. Do not be scared of the radiation, when dosed properly (using all of the tools that the doctors have) it can be very effective. That said, it is very important that you be a proactive patient that is prepared with lots of good questions and that you stand up for yourself and make sure that your doctors do a good job. I believe that for the RAI to be done the most effectively and with the least amount of “side effects” for the patient that it is important to have a good picture of what is going on inside of your body prior to the procedure and to be well educated as to what to expect following the procedure. Make sure that you have a good way to get ahold of your doctor following the procedure if you have continuing questions and/or things happen that you are not expecting.
There are alot of good posts regarding RAI on this website and if you search those words then you can access them. Study up so that you have a good understanding of what is going on (the Thyriod Sourcebook is a great book, and then book Graves Disease In Our Own Words is good also). If you are informed, then you can be your own “advocate” with your doctors and make sure that you are in a good place to go through whatever procedure that you choose.
Good luck to you.
Anne