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  • Anonymous
      Post count: 93172

      I have been taking PTU for about 4 months now. I feel better, however, I’m thinking about taking the RAI route. I used to be very active and would like to get back to near normal. Gail Devers story is an inspiration.

      The question I have to anyone who has gone the RAI way, what can I expect? How long did it take for you to get back to feeling “normal” after taking thyroid supplements?

      Any information would be greatly appreciated.

        Post count: 93172

        Hi, Derek:<BR>
        The return to normal after RAI varies from one individual to the next. GENERALLY speaking, it can take from three to six months to get the replacement hormones balanced out, once you start them. There is a time lag required with each dose change between blood tests, due to the fact that the pituitary’s response to hormone level changes is not instantaneous, and the endos prefer to wait until the TSH reading has had time to settle in before considering a change in dosage. This is not to say that you will spend months feeling bad, but you may not be quite “normal” yet, for you. You have to add to this timing, the amount of time after RAI that it takes for you to go hypo, or normal, which also varies with the individual. Your endo would have the most educated guess about timing potential for you, because some of it depends upon your own particular level of disease, and some of it depends upon the amount of RAI administered in the treatment ( i.e. whether you decide to “ablate” or try for euthyroid).

        With my own RAI treatment, going for ablation, it took one month for me to go hypo and begin hormone replacement therapy. Personally, I felt GOOD at that point, despite being slightly hypo (TSH of about 12), although others here have reported that they felt lousy at that level of hypo. But I had more energy, was sleeping better than I had in about eight months, and that includes the time I was on ATDs. It’s all relative, perhaps. And the replacement hormone worked. One year later, I still have dose changes, though, because five months after my RAI, what was left of my thyroid became hyper enough to throw the replacement needs out of whack. My own situation, though, is not what happens for the majority of people who opt for RAI. I think I’m in the “Top Ten Percent” or something. Or would it be the Bottom? ; )

        Wishing you good luck. And if you have any other questions you’d like to ask me, you can email me, if you’d prefer. Please put Graves in your subject heading, though, if you do.

        Bobbi —

          Post count: 93172

          I am a newcomer to the Bulletin Board and truly look forward to communicating with people who know what I am talking about. First of all, I am a forty-eight year old woman who was diagnosed with hyperthyroidism and Graves’ Disease about four and a half years ago. I went to my doctor initially because I was sure I was having a heart attack. Well, he took one look and knew exactly what the matter was. I immediately received treatment/meds. Nothing worked well, so I had the radioactive iodine treatment – twice! I have been on synthroid for several years now, having just had my dosage increased twice in the last three months. The disease has affected my eyes in a very profound way. I have had orbital decompression surgery done on both eyes, two strabismus surgeries on both eyes, upper eyelid surgery on both eyes and I am having my third strabismus surgery done on both eyes on February 11. I then must have both lower lids done. I have been through alot and have felt all alone thus far. I have a
          wonderfully supportive husband and children, but it is not the same as talking to people that have been through some of this too. I am very grateful that my doctors (all of them) are willing to stick with me and they are not going to settle for anything less than the absolute best they can do. I have been discussed (more than once) by opthalmologists all over the country via the internet and they have all helped with my treatment. I guess what I am trying to say is that it is good to be here and if there is anything I can do to help anyone in a similar situation, just ask. I am more than willing to share my experiences in hopes that it will help someone else to not feel quite as alone. I look forward to hearing from anyone. I still need support and I look forward to giving as much support as I can.

            Post count: 93172

            Welcome Jules!!!!
            You will find a very caring and sympathetic group of people here. All of
            us have had one or some ar all the problems you describe.
            Everyone here is very very helpful and will try and answer or discuss any or
            all of your problems. you must join us for Chat night on Wednesdays as well.
            We love to have fun as well as get serious. We all have lots of laughs,
            giggles, hugs etc. to go around. We also have a very sympathetic ear when
            I am 50 years old and was diagnosed 2 years ago October and have been on a real
            roller coaster ride since. I had RAI 1 year ago and am on medication now. I also take water pills for
            swelling of legs and hands. I have a little bit of problems with my
            eyes but no surgery yet (fingers crossed) .
            So enjoy our little corner of heaven on the net and I look forward
            to chatting with you soon
            LynnthePB from Toronto.

              Post count: 93172

              Thank you!

                Post count: 93172

                Hi Jules and welcome.I haven’t posted for awhile but the people here are a wealth of information. I have had Graves for 15 yrs. and all the related eye problems as well. RAI, strabismus surgery, several lid surgeries and it looks like decompression to come. With that will be more strabismus, eye lid surgery, etc. If possible, can you e mail me? I would like to hear more about the decompression. Thanks. I’m glad you found the BB. Try to make it to Chat on Wed.

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