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  • Anonymous
      Post count: 93172

      Thanks for your reply! I was wondering before your RAI if you had been on PTU and if so, how long? My main concern about RAI is that I have been on PTU for so long (3 1/2 years) that the RAI may not work. I have read in several books PTU makes the thyroid resistant to RAI and I have had a long run of PTU! The more I think about it, it just seems like surgery is so much more clear cut. I have not seen a surgeon but know the risks. There are phenomenal surgeons where I am at.

      Thanks
      Angie

      Anonymous
        Post count: 93172

        Angie,

        Admin asked me to respond to your post. It seems they deferred a few of your posts where you said “Long term use of PTU, makes the thyroid resistant to RAI” We have sent this to our medical board for an answer. We have not received an answer yet but I may be able to give some insight.

        Both antithyroid drugs work by either preventing the thyroid from making too much hormone or by blocking the hormone it makes from being absorbed. That is why the doctors want us to stop taking ATDs before RAI so the drugs are out of the system and the thyroid will absorb the radioactive iodine.

        We will post the answer once we hear back from our medical board. They too are all volunteers here and sometimes it takes time to get a response back from them.

        We are only a click away.

        Jake
        On-line Facilitator

        Anonymous
          Post count: 93172

          I was on the PTU for only about 2 months before my 2nd kill. One of the things that they did with both kills is that you had to be off the PTU for at 5 days prior to and 5 days post. That was the hardest thing for me because it really turned the thryoid hormornes loose in my body and then doubled them when the radiation started killing it off. They do a thryoid uptake scan prior to giving you the RAI treatment to see how quickly or if your thryoid will take up the radiation. This lets them know if they need an increased dose or possibly if there will be a problem with it not working. My uptake was 80 percent in 3 hours and dumped do 30 percent after 24 which told them that it absorbed it very fast but didn’t hold it long which is why they think the kills weren’t very effective. They also recommend avoiding for as long in advance as possible iodized (sp?) salt. It is actually the sodium that the thryoid craves and so the irradiate salt (it’s more complex that that but basically) and that is why the thryoid takes it in. So it’s really a combination of starving the thryoid of sodium and then stopping the PTU. If you have access to skilled surgeons. The other thing that I caution against is many doctors try and just damage the thryoid so that it is not horribly underactive. This can cause problems because after my second kill at 3 months my levels were very very low but when I reach 7 post RAI my thyroid had found a way to bounce back and was on the grow again and my levels were climbing again. I’ve been told that is not the norm but it can happen and then if you are already on synthroid it can really screw up your levels. I had/have a great Endo that really did not want me to go through surgery which I don’t completely understand other than the risks that are involved. Make sure you don’t get a surgeon that cuts blindly. Make sure they are going to map the nerves and the vocal cords before they start in after the thyroid. Also make sure they have a plan to transplant the para thyroid glands.(I think that too is why it’s still a little sore. They sliced the para glands and stitched them into the neck muscle so that they will continue to help regulate the Blood Calcium levels.) If you have a good skilled surgeon consider it as an option.

          Anonymous
            Post count: 93172

            Thanks you everyone for helping me with my questions. I saw my endo on Friday and she still thinks I should do the RAI procedure instead of surgery. Her reason is because I have Lupus and I’m in a flare. Her concerns are going to sleep and not waking up and possible complications during surgery due to Lupus. So, I reluctately agreed to go with the RAI procedure. My Lupus doctor is for the RAI procedure as well. So, you can’t fight doctors. And, by the way, they are both extremely good doctors. Before they do the procedure they have to do some sort of uptake procedure. What’s that all about?

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