Viewing 15 posts - 1 through 15 (of 95 total)
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  • Anonymous
      Post count: 93172

      I have started a support group for people with Graves
      disease. Graves disease is a autoimmune disease of the
      thyroid gland. We are sponsered by the National Graves
      Disease Foundation. We meet every fourth Wednesday
      starting 24 July at Holmes hospital in auditoriums B
      and C. Drop an E-mail and give your e-mail address or
      phone number and I will contact you.
      Jake George

        Post count: 93172

        My brother John has been diagnosed with Graves Disease. I would be interested in discussing his situation to see if you have information that may help him. He lives in upstate New York and does not have convenient access to the internet. I can be his messenger for the time being.

          Post count: 93172

          My phone number is 408 241-3231
          Where is Holmes Hospital? I live in Santa Clara, CA
          I was told in June I have Graves and am currently
          on PTU and would love to be a part of this group.

            Post count: 93172

            My mother was diagnosed with Graves Disease last year and has ungone the RAI
            treatment. Of Course, after that they put her on thyroxin (synthoid) since, then
            they seem to continually be changing her dosing regimen. I am a HIV+ male and I truly understand dosing. She is suffering, and miserable.
            Is this normal. One question is the activity of a person affect doses of the drug? Better yet, how will excessive exercise, and lack of exercise
            react with throsyn dosage.
            If you can help me find the answer to these I will report back with our findings.
            Ron Sageser
            Richland, SC 29675-0120

              Post count: 93172

              Recently diagnoised. Interested in asking questions.

                Post count: 93172

                Does your Mother have eye problems also ?
                I had a thyroidectomy last November and developed double vision in January. There are so many different problems related with Graves.
                I have not been able to find anyone that has
                double vision.
                Be patient and understanding. It is frustrating to everyone involved… Dot

                  Post count: 93172

                  An eye specialist is 99% sure that I have a mild case of Graves Disease. My left eyeball is not permanently bulging but I have occasional “attacks” when my eyeball becomes extremely prominent, the eye waters profusely and is extrmemely painful This symptom occurs sometimes once or twice in a period of six weeks and lasts approximately 24 hours. Do any members of your support group suffer similar symptoms? I would be extremely grateful to hear from you.

                    Post count: 93172

                            What you discribe is very common in Graves patients. I suggest you get to an endocricologist
                    to have your tsh and Th3 TH4 levels checked.
                    Send me an E-mail and I will send you some further information
                    Jake George

                      Post count: 93172

                      Dot, The address is NC not ND,
                              I have double vision as well> it is a very common problem with Graves. I run the Support group
                      in Melbourne Fl. Most of the group has had problems with double
                      vision. Send a self addressed stamped envelope to the Nation Graves Disease Foundation,
                      2 Tsitsi Court, Brevard, NC 28712 and we will get an info packet out to you in the mail.
                      Jake George

                        Post count: 93172

                        Do you know of any support groups in the Marin
                        county area? Marin County is just north of San
                        Francisco. I not only have Graves’ but am also
                        finishing up my dissertation in Clin. Psychology
                        on Graves’ disease and stress. As a psychologist
                        I am interested in perhaps (one day) starting up
                        a support group, if there isn’t one now in the
                        area. If there is one, they might be interested
                        either a presentation or perhaps participating
                        in the study (which is supported by the largest
                        HMO in California, Kaiser Permanente.).
                        Hope to hear from you. Ann

                          Post count: 93172

                          I was recently diagnosed with Graves Disease.
                          Previously I was being treated by a dermatologist
                          for a terrible skin rash. After $100’s and much
                          frustration, I switched Drs. The new Dr. said it
                          was thyroid right away.
                          Has anyone else had the problem with a rash? I
                          know they talk about problems on the lower legs
                          but mine extended to almost every part of my body
                          but my face.
                          I know of no support groups in our area; South East
                          I also seem to have some vision problems although
                          not bulging eyes as is common.
                          Please E-mail.

                            Post count: 93172

                            I don’t know of any support groups but would be interested in participating in one if the overall interest is there.
                            I’m in the East Bay I have graves ophthalmopathy and believe I am still hypothyroid,
                            I’m also in the Kaiser system.
                            Let me know if you have any further information.

                              Post count: 93172

                              Tell me more about your support group. I have a neighbor with Graves disease. Where are you located? We are in Alexandria, VA.

                                Post count: 93172

                                please send info packet and info on nutrition and diet. i have severe graves opthalmopathy and have 5 surgeries and radiation treatments. more surgery is indicated at this time. have gained lots of eight with long term prednisone treatments. i need information. thanx

                                  Post count: 93172

                                  Thanks for the response. Its good to know I’m not
                                  the only one out there (I was beginning to worry)!
                                  You said you were diagnosed 3 years (?) ago? Its
                                  been almost a year since the rash started. It never
                                  totally clears up but has its good and bad times.
                                  I’ve been using kenalog cream/ointment with pretty
                                  good results. Some of the things you can’t use for
                                  extended periods of time (more than 2 weeks). My
                                  first dermatologist didn’t tell me that though. The
                                  second one did and the endocronologist. I’m due to
                                  go in on the 30th. I don’t feel sick though. All
                                  the literature they give me tells me a few weeks
                                  after starting the Tapazol you should feel better,
                                  my initial complaint is still the rash although they
                                  tell me my blood counts are WAY WAY out of wack.
                                  Keep in touch!

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