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  • Anonymous
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    Post count: 93172

    Hi Jim,

    Yes, I had to take a second dose of RAI. My second dose was almost two years after the first. I really resisted the idea. My endo took one look at my initial dose (on my first follow-up appointment) and said “he didn’t give you enough!” We weren’t in touch with the doctor who chose the dose, so he thought he might experiment with me to see if he could make me “perfect” without making me hypo. My T4 came down, but my TSH never came up. Eventually, my doctor put me on a very low dose of Tapazole, in his words, “to kickstart your pituitary,” and that worked, the TSH came up. Then I said to him, let’s stop the Tapazole (because I specifically took RAI to avoid it), and he told me no, I was going to have to take it for one to two years, just like someone who had chosen it for a treatment option. I said NO, I won’t, let’s stop it and I’ll do another RAI if I must. Well, eventually I had to admit that I knew something was amiss when my TSH would never rise on its own, so I agreed to a second RAI.

    I tell you all these details because there are many different reasons for doing a second RAI. It is VERY rare, however, so I don’t want anyone to think it’s inevitable, or even likely to happen to them. My particular situation can be avoided by making sure that everyone has communicated and agrees on what kind of dose you want — one that will completely destroy the thyroid, or one that will bring you “down” but not out. (Personally, I think the low-dose is a fantasy, but some doctors still try to make it work.)

    Let me share a couple of very important facts with you. First, the RAI does *most* of its work inside the thyroid in the first six weeks, but it takes six MONTHS for the RAI to have done everything it is capable of doing. Granted, after that first six weeks, the changes will be smaller, but you can still expect changes to occur in those first six months. There is also the element of the destructive qualities of the antibodies themselves. Every Graves’ patient will have a “dead” thyroid if they live long enough. The antibodies artificially age the gland and kill it, left to their own devices. This action will also be going on during the first six months after RAI. Both of these things will contribute to the possibility that the first RAI *could* be enough to get you where you’re going.

    I wouldn’t rush into a second RAI after two months. I realize it SEEMS like a long time to have waited, but as you can see, there’s still more that could happen to bring you into normal range.

    If you do go for a second dose of RAI, it will probably be larger than the first, but let me explain that as well. When you did your uptake/scan, the doctor got a percentage of iodine that would be taken up into your thyroid. Typically, when we have Graves’, that number is fairly high (I think mine was 88%). That means that if there was a dose of 10 millicuries (with my uptake percentage), the thyroid ultimately “took up” 8.8 millicuries, and the body flushed the rest out. Now that you have had one RAI, your uptake is likely MUCH lower (mine was at 24% by then). That would mean you need to take in more in order to keep the same amount (or the lesser amount they figure you need to finish the job) in your thyroid. My first dose was 10 millicuries, my second was 22, but based on my uptake, I only retained about 5 millicuries the second time around, where it was closer to 9 the first time. So you may TAKE more of the RAI, but that doesn’t mean there’s more in your body after the first few days. The body flushes the excess in the first 48 hours, and after that you are only talking about whatever ended up in the thyroid.

    If you do take a second RAI, though, the probability is much higher that you’ll end up hypo quickly, mostly because so much damage has been done before you even take it, but also because, with a second dose, they typically “overdo” it to be sure of success.

    Everything considered, if I were you, I would give it some more time at this point. If the doctor can put you on a tiny dose of Tapazole or PTU in order to make your levels normal FOR NOW, you may find that you end up going hypo completely on your own, without the help of a second RAI. You can see that I waited a very long time — in retrospect, maybe I wouldn’t have given it two whole years, but I’m still glad I was *certain* I needed to do it, that nothing was happening quickly enough on its own.

    I hope that helps! Feel free to ask me any other questions you may have!

    ~Ski
    NGDF Assistant Online Facilitator

    Anonymous
    Participant
    Post count: 93172

    Has anyone had to take a second dose of radioactive iodine?
    If so, how long after the first dose was the second one taken? Was the second pill the same dosage? Might it work faster than a typical first dose?
    I’m 2 mos. since RAI, still hyper, and I might be facing this prospect.
    Any insight will help.

    Thanks, Jim

    Anonymous
    Participant
    Post count: 93172

    Hi Ski,

    Thanks for your detailed reply. Lots of info there that I couldn’t get elsewhere. Very Helpful!

    Thanks again, Jim

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