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  • Anonymous
      Post count: 93172

      Hi Angie,

      You may very well have had a reaction to the PTU. Often when we wean off our ATDs our thyroid levels go up. That is because the doctors want our thyroids producing and ingesting iodine so the RAI will work.

      Heck when I was hyper I felt great. I could work 23 hour a day, run a marathon, and still have time to paint the house, bake cookies for homeless cats etc.etc.

      Do not confuse excess hormone with good health. Because while we are hyper we are losing muscle mass, bone density, putting a strain on our hearts, etc. etc..

      If you do RAI or surgery it is up to you. I hope you choose what is best for you in the long run because you will be the one it affects.

      We are only a click away.

      On-line Facilitator
      Co-Author “Graves’ Disease In Our Own Words”

        Post count: 93172

        Just wanted to know if anyone else out there remembers stopping PTU before RAI and feeling fantastic. I have been on PTU for 3 and a half years and stopped it a few days ago, hopefully in preparation for RAI (if I don’t change my mind and opt for surgery instead). I have been regulated for quite some time right in the middle of the normal range on PTU and now that I am off of it I have found all my horrible achy joints have disappeared and my vision is unbelievably clear. My head also feels better. My skin on my legs would always feel like it was separated from the muscle by water or fluids when I walked–this is gone too! What might that medicine have been doing to me??!! I actually could run which I haven’t been able to do because my knees and ankles have been so tender and achy. All I can say is wow! It seems like someone took away the 10 extra years I have been feeling. I am typing this without glasses-something I have not ever done. I want to call my doctor and tell him this but he is out of town. I was orginally put on this medicine while pregnant and if it caused these things, well, I had no idea if it was the pregnancy, Grave’s or another immune disorder. I think back now to when they put me on PTU and remember well the horrible itching and rash it caused. Maybe my body was trying to tell me something. It itched so bad I would take my shoes off and drag them along the concrete to scratch them!

        Those of you now on PTU, please don’t think you should stop taking your medicine. I was very hyper without this medicine and it got me through a tough pregnancy which was headed for disaster without it. I just think my body must have had a hard time with this med. because of the way I am without it. Too long off of it and I will be right back in the same boat so keep taking your medicine!

        Has anyone had this experience when stopping PTU?? I am really curious to know. I also wondered if PTU might be known to cause the things I had or if anyone else has these achy joints, blurred vision, water retention things right now while being on PTU.

        Thanks for any comments. I feel so good I don’t want to go for RAI and mess it all up!


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