Viewing 15 posts - 31 through 45 (of 95 total)
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  • Anonymous
      Post count: 93172

              There are two support groups in PA. Give me a E-mail and I will give
      you the phone numbers. Or you can send a self
      addressed stamped envelope to The National Graves
      Disease Foundation/I at 2 Tsitsi Court Brevard, NC 28712
      Jake George

        Post count: 93172

                We have three support groups in CA. one in Berkely (Susan Calico 510-540-8640)
        one in Santa Cruz (Deborah Simms 408-479-0559 and
        one in Cypress CA (Tina Shiflett 714-952-0976. We
        all know life can be a bummer after Graves but it
        can be good again. Send a self addresed stamped
        envelope to the National Graves Disease Foundation/I
        at 2 Tsitsi Court Brevard, NC 28712 and we will
        get a info packet out to you.

          Post count: 93172

                  Send a self addressed stamped envelope to
          the National Graves Disease Foundation/I at 2 Tsitsi
          Court Brevard, NC 28712. Or give me a e-mail or call.
          My phone number is 407-254-9719. There is help
          and info available out there.
          Jake George

            Post count: 93172

            Dear Jake,
            You say you HAD the bugged eye look, so I guess that means the orbital decompression worked for you. Would you mind giving more details like, did it only take 1 surgery? Was your eye sight affected in any way? How long did you have to wait, as far as the disease being in remission was concerned? Do you look like you did before you got sick? Please excuse all the questions but if one more person looks at me, giving me an extra wide eye expression I’m gonna kill em!
            Thank you so much, Denise

              Post count: 93172

              Dear Katie,
              How did that doctor visit go? I am still waiting for an appointment to be set up as far as my next radioactive iodine treatment is concerned.
              My drivers license picture would not go in Elle magazine either let me tell you! Isn’t it funny how you can’t see it in the mirror but take a picture and watch out! Oh well.
              Just out of curiosity (bad spelling) how old are you?
              Hope everything went ok. Let me know.
              Take care, Denise

                Post count: 93172

                I had the radiation treatment done on my eyes.
                I had it done at UC Davis, in Sacramento, CA.
                I had been seeing the DRs. at UCSF Medical Center.
                The treatment definitely improved the movement of
                my eyes, and my double vision is much better.
                It also relieved some of the pressure and watering.
                My eyes still protrude, which I’ve gotten used to.
                I was lucky that my eyelids still closed so I avoided
                that complication.

                  Post count: 93172

                  Dear Mary, Thanks for the reply. I think the radiation for the eyes would be a much better option since everyone in this group who has gone for the decompression surgery has had it 5 or 6 times without great results. Thanks again, Denise

                    Post count: 93172

                    I’m not sure if there’s a cure. I’m new in this
                    ball park. I was just diagnosed the end of June.
                    I have another appointment on Aug. 30. I’ll know
                    more then.
                    They keep saying after 8-10 weeks on the Tapazol,
                    I’ll feel better, but I was never sick. It all
                    started with this stupid rash. We went the whole
                    rehlm of testing. First they thought it was my dog,
                    then our hot tub, and finally my dermatologist sent
                    me to a Major Medical Center (Hershey, PA) to a
                    dermatology lab for testing. The guy there is a
                    world-renowned specialist in the field. BUNK!!!
                    After five days of testing, the only thing they
                    could come up with was a sensitivity for nickel.
                    So I switch dermatologists and immediately she said
                    it was not a nickel rash, she thought it was my
                    thyroid. My blood counts were so far out of wack,
                    I’m anxious to see what they are now after being on
                    the medication. They insisted I had to be sick.
                    The only symptom I had that I could see other than
                    the horrible rash was I was super irritable. Bless
                    my husband and my son for their patience! I don’t know
                    if that irritability was part of the disease or just
                    the stress of the rash and the long ordeal (it started
                    last November).
                    Plese stay in touch and let me know how your sister
                    is progressing.

                      Post count: 93172

                      I’m new to the internet, and new to this diagnosis of Graves Disease…I was diagnosed in June, had RAI once with no appreciable change in labs yet. I’m having alot of eye involvement, which is discouraging. My emotions are on a roller coaster…Do you all out there work at regular jobs with this. I’, off duty for now and concerned I may never return due to this lingering dis-ease. I, too, live in a rural part of Northern California, up in the redwoods, and there are no endocrinologists in the area. I plan to see one from San Francisco, in September. I’m quite concerned about my eyes so if you know anything that helps, let me know. I would like to talk to anyone who has this disease and share experiences. My home phone is (707) 668-5541

                        Post count: 93172

                        Hi Rachel!
                        I’m new at this too. I too was diagnosed in June.
                        I have an appointment on the 30th of this Month.
                        I don’t have any eye involvement at this time but I
                        do have vision problems. From what I hear most people
                        experience double vision but that’s not the case
                        with me. I have difficulty reading which scares me
                        I am working full-time currently and hopefully I
                        will remain doing so. I know I’m fortunate from
                        many people I’ve talked to. I hope it doesn’t get
                        worse but I don’t know. I have many questions to
                        ask when I go in next week.
                        I understand there’s a CHAT room opening up soon
                        for Graves Disease which I think will help a lot.
                        I know I would like to talk to others with the same
                        problem. Its scary.
                        I know they say after I’ve been on the medication
                        for about 10 weeks I should feel better, but I don’t
                        know that I ever really felt sick. It scares me to think
                        that I may be sick. I do tire easily and my
                        emotions were on a roller coaster too. I’m thankful for
                        my patient husband and son.
                        My doctor put me on Zoloft for the emotions and it really
                        helps. Its also not one of those antidepressents
                        that puts you in la-la land.
                        I’m also on Tapazol for the Graves Disease. I’ll
                        be anxious to see what my blood work shows. I have to go
                        today for the bloodwork so they have the results
                        by the end of next week. Modern technology is so slow
                        Keep in touch, good luck. OK?
                        PS I’m new on the internet too and was very glad
                        when I found this BBS.

                          Post count: 93172

                          Hi. My name is Bernadette and I was diagnosed with Graves in April. I was very thin up until January. Then I noticed my weight has started to go up. With the PTU, my weight continues to climb!! :-). My doctor said that I am in the 10% who will gain weight. Anyone else with the same problem!!! Please Help!!

                            Post count: 93172

                            I’ve been reading with much interest the stuff on radio active iodine treatment. My sister was recently diagnosed and when she returns to San Diego next week she is scheduled to start those treatments. While she’s been in Virginia I’ve been letting her look up info in Graves’ on the Net (she doesn’t have a computer). I had asked about a local support group for her, but the one suggested was in Berkley (500 miles away near San Franscisco). She’s at the southern most part of California – almost to the Mexican border. Any support group there?

                              Post count: 93172

                              The irritability is DEFINITELY a part of the disease. It’s a symptom I keep seeing come up over and over again. I’m glad I found that out about my sister. She’s sometimes like a time bomb. She has some added stress in her life right now in addition to Graves because of a recent death in the family. I’ve never seen her this close to the edge though, even when our Father died two years ago. She too had a lot of mis-diagnosis of the rash, including being told she had lymphoma – that sure added some stress. One dermatologist told her it was a fungus and of course she had all the allergy testing and was allergic to everything. The Graves’ diagnosis is the first that encompasses all of the symptoms she has and a few she hadn’t connected to illness – like the irritability. She also got tremors in her extremities, heat intolerance, hair loss. The only major symptom she hasn’t displayed is the eye bulge. Keep in touch and I’ll pass on comments to her.

                                Post count: 93172

                                I’ve been diagnosed since June, had one dose of RAI with no results as yet. I live in a remote part of Northern California, no endocrinologists in area…planning to see one from San Francisco, in Sept. ..I’m on inderal and ativan, not working, feeling crazy alot of the time, and lots of eye involvement, swelling, rednedd, bulging proptosis. We need to establish a support group in this area and I would be glad to facilitate this effort. I’m a RN,PHN, but I need lots of help understanding this disease.
                                Please add me to the list of those interested in being part of this support group. Also, feel free to contact me by phone @(707) 668-5541. I’d love to talk,

                                  Post count: 93172

                                  Thanks Joann, for responding on the internet. I wasn’t sure I ended up on the message board or not, so I tried again, so you may see a 2nd entry from me there. I’m eager to hear how your labs turn out…My thyroid hormones are still up in the 20’s, and without drugs ( I’m on inderal, ativan, and trazodone) I’d be even more a mess. My partner, Ernie is patient and kind, but my emotional hyper-reactivity bothers me too. I still see no end in sight with this. I wonder how long before I feel normal again…? I will keep in touch and please, you do the same. Good luck with your labs…

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