[kmb113]

#1019875

Hi…I was wondering if anyone had to have a second dose of RAI. I am a 44 yr. old female and was diagnosed w/ Graves back in 2005. Had RAI, then went hypo very quickly. I was then put on Synthroid and was stable for about 2 years. Approximately a year ago I started having hyper symptoms again. The synthroid was gradually reduced to the point where I stopped taking it altogether. Blood work still showed high end of normal readings. Dr. then prescribed Tapazole, which in turn, caused me to become hypo. Finally, I stopped all medication for about 8 months. Felt fine up until about a month ago, then the hands started shaking, which was followed by the heat intolerance. I have always felt much warmer than the average person, but this is unbearable. Sweating in the middle of winter in NYC…..not much fun when you’re wearing a coat on a crowded subway.

I have an appt. w/ my endo in a few weeks and I know he is going to suggest RAI again. This is a big decision to make because I am not sure how safe this is.

Your thoughts are appreciated.

Karen

[Bobbi]

#1074725

Ski — one of the facilitators here — has had RAI twice. She should be getting home from her holiday vacation soon, and she can write you her experiences. In her case, the first treatment did not render her hypothyroid, so a second was required. And I do know that thyroid cancer patients often receive multiple treatments of RAI, and this is after they’ve had most of their thyroid surgically removed! I recommend that you do discuss things carefully with your doctor, but I know of no reason for you to fret…..other than that you are hyperthyroid again, which is definitely a bummer.

[Ski]

#1074726

Hi Karen,

I did have two RAI doses, and finally got healthy as a result. The only thing I would point out is that your second dose will likely be much higher than your first, but not for the reason you may think. The first RAI, even though it (apparently) did not completely destroy your thyroid, still did some damage to it. The RAI dose is calculated partly on your uptake, which is a percentage figure they get when they do the uptake/scan. (In the scan, which I’m sure you recall, they give you a measured dose of a non-destructive RAI isotope and then measure, 24 hours later, how much of it remained in your thyroid.) The RAI dose, when we are first diagnosed, is typically calculated from a very high percentage of uptake, because that goes with active Graves’. What they try to do is determine a figure that they want to eventually stay in your thyroid, and work backward to that. You can see that if you want 5 millicuries to remain in the thyroid, and you are at an 80% uptake, then you must take around 6.5 millicuries to allow for the 20% that will be flushed from your system. If your uptake is more like 50%, then you must take 10 millicuries to end up with 5 millicuries in your thyroid. Your uptake at this point is likely much lower than it was when you were first treated, so your RAI dose may be higher, but the effective dose (the amount that remains in your body after 2 days) is typically similar to your first dose.

If you’re truly uncomfortable with the idea of a second RAI, you can still choose ATDs or surgery at this point. Whatever it takes to get your levels to normal, that’s the goal. The means are entirely up to you (with certain rational restrictions, such as not doing surgery on a hemophiliac).

[Author]

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