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  • Anonymous
      Post count: 93172

      For those of us who only recently found the bulletin board, where are
      your web pages? Thanks.

        Post count: 93172

        Well, for those who were wondering about my recent visit to Mayo…
        They confirmed that I have Graves’ and they questioned a bit of how my
        endo was handling it, and they said that because he didn’t let me
        “bottom out” there is no way to know if the RAI in February did a
        complete kill-off of my thyroid, so it may grow back {pout} oh well…
        other than that, they tested for everything else under the sun and
        put me back on track in some areas and ruled out others.

        Since I got back, I sat down and learned HTML and went a bit crazy with
        my web pages (my hubby had done them before, because I didn’t know how)
        and I have massively expanded them… have a look-see and let me know
        what you think — I have a page for Graves’ Disease included in there
        with a link to as well as NGDF and a few other sites.

        Now, because I was up until the wee hours of the morning for the last
        week doing my web pages, I will be catching up on sleep for the next
        few days! {I laugh}

        Radiant (aka Donna, aka Danita)

          Post count: 93172

          This week I had my 6 weekly endo appointment. T3 and T4 levels have slightly gone up but still in the normal. My TSH is still 0.03. I am to keep taking my current PTU dose until February which will make it twelve months that I have been taking it. My endo doesn’t want me to take it after the twelve months. What are the concerns of taking PTU past the twelve month point?

          Plus my eyes for the last 4 weeks have been burning. So badly sometimes that I have to put cold water on them and I am constantly wearing my sunglasses (even inside). My endo has told me to use Liquifilm? He can see no changes to my eyes and would prefer to avoid steriods. He and I both!!! Does anyone else have the burning eyes and if so how do you handle it? Any help would be appreciated.


            Post count: 93172

            There is controversy about taking meds like PTU long-term. In many countries (Japan, and quite a few European ones), patients DO continue to take the meds for years and years and years. Here in the U.S., doctors weigh the possibility of liver damage, and other issues, against the safety features they feel are associated with RAI and usually counsel their patients not to stay on the meds if they are not showing signs of going into remission. It involves an evaluation on their part of risks vs. possible rewards. My suggestion to you is to talk with your doctor, specifically about why he doesn’t want you to stay on them, and evaluate for yourself whether you agree or not with that position.

            If your eyes are giving you trouble, see an ophthamologist, please. Endos are great at what they do, but they are not specialists at eye issues, and if you are developing eye disease you need to have an ophthamologist. An opthamologist can also tell you if you are NOT developing the eye disease right now, too.

            Bobbi — NGDF Asst. Online Facilitator

              Post count: 93172

              Hello All –
              I have been reading, posting & responding to the board for over 9 months. My son who was born with Neontal Graves Disease has just turned 9 months today – and is healthy – BIG – and happy! He has been given a clean bill of health from his Ped. Endo and should have no problems due to the temporary infant Grave’s disease. I just recently decided to go back to school to get a Master’s Degree in elementary education. I had been fighting an up and down battle with on & off symptoms since my RAI in Jan 02 – but since taking synthroid for the last 6 months – I finally feel the best Ive felt in almost 5 years. I’ve been maintaining a normal weight, and even though i do have some “bad” days – but those are becomming fewer and far in between. I just wanted to say thanks to all the facilitators for all the knowledge and to let everyone else know that there is a light at the end of the tunnel for those of us with Grave’s and those who live with us! Best Wishes All – Amy (Michigan)

                Post count: 93172

                My ins. comp. says that I can’t go to the University doc anymore. I got in to see a local doc who seems to be good, but [he] is very angry over my care. (Or lack thereof). He says that an allergy to seafood should NOT stop any further testing, that hypertention that’s persistant is NOT from hyperthyroidism and that carpal tunnel is worse in HYPOthydroidism. He said I should never have gotten the flu shot becuse I am in treatment, that I have hyperthyroidism caused by Graves disease, and that he can feel nodules on the thryoid. I had more blood work and another ultrasound today. I go back on Jan 9th to see when and where I get the uptake and he cut the propranlol in 1/2 and told me that Tapazole is SUPPOSED to be taken twice a day. I told him I feel like death and he said that once he can figure out where I am in this and hopefully nothing has gone on for too long, then he will talk about ‘feeling better’. I let him know that I fired my first endo for his lack of ‘intelligence’ and I liked that one I can’t go back to.
                I have 4 diagnoses at this time he says, hyperthyroidism caused by Graves Disease, MNG (multinodular goiter) AND something totally unrelated with my blood pressure that he is also going to, “look at, treat and fix”.
                I like him :)

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