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  • Anonymous
      Post count: 93172

              Been there done that! This must be some new record! I
      answered your mail in 10 min. I have had 12 eye
      surgeries for Graves. Orbital decompressions on both
      eyes strabismus, lid retractions Etc Etc. We do
      bot have a Support Group in MN but… Send a self
      addressed stamped envelope to the National Graves
      Disease Foundation/I at 2 Tsitsi Court, Brevard
      NC 28712 and we will be a info packet out to you.
      I just started a support group in Melbourne FL.
      Send me an e-mail or give me a call at 407-254-9719.
      We will talk. Or call Dr. Nance Patterson at the
      Graves foundation. She also has Graves and is a
      good egg. Nancy can be reached at 704-877-5251.
      Jake George

        Post count: 93172

        Hi Jake! I’ve been a member of the NGDF for two years and have received many helpful bulletins from Nancy. Thanks for the info, though. Question: At what point do you say quits to surgeries and live with how your eyes are? As good as Mayo Clinic is, I sometimes feel like they’re just guessing at how much to tuck, scrap, etc., etc. I guess my goal is to be able to sleep at night with my eyes fully closed (without goop and bandanas) and not look like I’ve been up all night drinking!
        By the way, I was on line reading other messages when your reply came up on the screen! :)

          Post count: 93172

          I finally found what I was looking for – a Graves’ Disease support group!! I live in the middle of a cornfield in SW MN where we mainly worry about how much rain we got overnight or whether the new teacher in town is married or not! I never imagined dealing with a disease that would distort my facial features, force me to use “eye goop” and tape my eyes shut at night, and make me embarrassed to be seen in public places.
          When I was diagnosed with Graves’ Disease in Feb. 1990 I had never even heard of the name. Since then I have had a radioactive iodine treatment, orbital decompression surgery, extraocular muscle surgery, and eyelid retraction on both eyes. Today I am still fighting the effects of this disease that has completely changed my life. Just this June I had another lid retraction surgery on my left eye. The doctors say I’ll probably want to have my right eye done this fall in order to make my eyes look more aligned. Now you know how I’ll be spending my MEA vacation this year. Also, getting my Synthroid medication regulated has been tricky; every time I’ve had my TSH checked they’ve changed the dosage.
          I have done all of my doctoring at the Mayo Clinic in Rochester, MN. I put my complete trust in their hands, and don’t hesitate to recommend their services: Dr. Colum Gorman, Endocrinology, Dr. James Garrity and Dr. George Bartley, Ophthalmology.
          Even though I look back on past pictures and remember the “good old days,” I have been able to live a happy, normal life with the support of my patient and supportive husband. I am willing to correspond with anyone about their condition, in hopes that I can help make their day a little easier. I wouldn’t wish this disease on anyone, but feel comforted in knowing that I am not alone.

            Post count: 93172

            I said quits after twelve surgeries. My eyes still don’t
            close completely and I have permanent double vision but
            it is corrected with ground in prism’s in my glasses.
            Look for an online NGDF chat room coming to you soon.
            Working out the datails with Pat right now. Good
            talking with you. Give me a call sometime.
            Jake George

              Post count: 93172

              Hi Debbie
              Please tell me more. What were your symptoms at the
              onset of your diagnosis? Did it progress rapidly or
              how did it progress?
              I was diagnosed in June of this year and quite honestly
              some of the messages (yours especially) scare the tar
              out of me.
              I don’t know what lies ahead. I have a Dr’s apt.
              the end of the month, I just had blood work done today
              for that appointment.
              I was never “sick” .. it all started with a nasty
              rash (more like dry patchy skin) that spread over
              my entire body with the exception of my face.
              I was doctoring with a dermatologist for 8 months and
              had been referred to a specialist in that field.
              Their diagnosis was a sensitivity to nickel.
              I changed Drs. after some of the things he told me
              to do made no sense. The 2nd Dr. told me from day
              1 it was Thyroid. She was right. The rest is history.
              I’ve been on Tapazol since June.
              I think the worst at this point has been the emotional
              roller coaster I’ve been on although I do have vision problems.
              Some days I can’t read anything from time to time.
              I guess I wonder if I’m headed for major problems
              down the road. I don’t have the double vision many
              people experience but I’m scared of what may lie ahead.
              Please, tell me all about your symptoms and progress to where you
              are now.
              Best of luck to you, thanks for being there. Nice to know
              there are others in the same boat.

                Post count: 93172

                Hi Debby…It sounds like you’ve been thru alot with your eyes with this disease. I’m only diagnosed now for 2 months. At what point do you start thinking orbital decompression and lid retraction surguries and how beneficial have they been for you? My goal is the same as yours, to sleep all night and wake up without this stabbing pain in my left eye, as well as the swelling that truly does make you look like you tied one on the night before. . It just keeps getting worse and it’s really scaring me. My eyes preoccupy my mind so much it drives me crazier than I feel already…Does this really end?

                  Post count: 93172

                  SEP 12, 1996


                  IS REALLY SUFFERING. THANKS!!!


                    Post count: 93172

                    My mother has been having problems with her eyes to the point where she stopped driving. She was diagnosed with fibromylagia earlier but has just been diagnosed with Graves as well. I told her that this combination seems to be somewhat common after reading this bulletin board and am lobbying to get her online quickly so she will have some support.

                      Post count: 93172

                      I have just been diagnosed with Thyrotoxicosis. Symptoms include eye disease and goitre (present since 1989, checked for thyroid problems 1989 – 199, and told ‘no problem there – eye disease and goitre occur independent of abnormal thyroid actvity & this is what happened you!’ and therefore ignored problems until now. I have –
                      – muscle weakness in my legs
                      – tremor in hands
                      – exophthalmus (proptosis) more prominent in one eye than the other but present in both
                      – extreme heat intolerance
                      – ‘itch’ or ‘pins and needles’ in ankles
                      – frequent palpitations
                      – severe marital problems (but I am never irritable or unreasonable!)
                      – extreme tiredness but inability to sleep restfully
                      – occasional eye irritation

                      can anyone reassure me that I am still sane, and can have a normal life? I have started treatment on carbimazole to ‘flatten’ the thyriod functions. I am cncerned about progression of symptoms, but although I believe the thyroid functions can be controlled, I understand that nothing can be done to stop the eye disease. Is this true?

                      Why could my problem not be diagnosed at the onset of the eye disease?

                      Any information gratefully accepted.

                        Post count: 93172

                        Hi Maura! Welcome. What’s a normal life anyways? :) I think many of us have had to make changes in our lives to accomodate this disease stuff.

                        They were right, the eye disease can be independant of the thyroid levels. I have no major thyroid problems (yet) but have gone thru the severe eye problems.

                        You aren’t going crazy (probably anyway, I don’t really know you, hehe) but this disease can make you feel like you are at times. This does often affect the emotions and can cause depression.

                        All the best, Bruce

                          Post count: 93172

                          I looked for this for years.Before I was 44 I had 3 major attacks of hyperthyroidism that went undiagnosed.These were each followed by periods of hypothyroid. I am also bi-polar, so was crazed during periods of hyper.The last 2 attacks were about 6 months apart and the first lasted for 2 years. I lost about 100 lbs. the first 3 months and gained 95 in the year between attacks; 45 in the final month prior.I spent 6 months on medication with no real changes.I was irradiated 6 years ago and spent the first 2 years with no immunity to anything: yeast infections, pneumonia etc.In fact pneumonia preceded the final hyperthyroid attack.I developed osteoporosis as a result of the years of hyper, and have two thoracic compression fractures and severe lumbar stenosis too. All the pneumonias have left me with scar tissue in the lungs and pulmonary hypertension that went undiagnosed for long enough to cause me to have congestive heart failure.I am the text book case of what can happen when your Dr. thinks you are a fat, lazy, middle aged hypochondriac. Right now I am hypo as a new Dr. reduced my dosage. Feeling like death warmed over and very depressed. Glad to have found you all..most people don’t know what their thyroid gland does.

                            Post count: 93172

                            Your post is PERFECT testimony as to why treatment should be swift, even when you feel OKAY!!!!!!The course you outlined is truly textbook. Many Graves sufferers ( and I was one of them ) think that ” if it ain’t broke, don’t fix it “. I thought that if I felt ‘okay’, then I would be ‘okay ‘. I postponed active treatment for my ” mild Graves ” ( diagnosis was ‘subclinical’) until I began experiencing symptoms, which, by the way, hit me like a ton of bricks ( last semester while I was carrying 15 credit hours and an Honors student ). Seems the symptoms became apparent because of the very high stress…I am also a single Mom, and I work . If I had it to do over…I would have done RAI a year earlier. Hope this helps. Lin

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