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  • Anonymous
      Post count: 93172

      Glad you found us,

      We all have been there done that, and forgot what if was along the way.
      Please read the NGDF homepage at the top of the BB. There are lots of
      links to other Graves sites. I am a southerner (Although Dianne says I
      still have a NY accent). Have lived in Fl for 10 years. I run the support
      group here in Melbourne FL. Feel free to drop a note to my e-mail or the BB
      and I will try and answer.

      Jake (Achgook)

        Post count: 93172

        Thrilled, at last, to find you ! My 25 year old daughter has been diagnosed
        with Grave’s disease and is experiencing all of the expected symptoms.
        She has had one RAI treatment and her heart rate is down from 110 to
        77 but thyroxin levels (what are they called?) are up. The doc, a small
        town MD, recommends another RAI treatment when he returns from the
        Holy Land in three weeks. I am deeply concerned that he has not referred
        her to an endo but want to give her good information as she is also dealing
        with some in-law resistance to anything other than the family doctor who
        has treated all of her husband’s family for generations.
        I have an auto-immune liver disease, PBC, and have been going to the
        Mayo Clinic for years, belong to an on-line support group, and would love
        to connect with folks like you who have “been there, done that” with the
        GD thing. Have read posts from the last three days, have printed out many
        to send along to my daughter, and would really appreciate any hints on
        seeking out info on the net. I am a relative newbie and have limited time
        to spend on-line so any short-cuts would be most valuable.
        My daughter is very open to alternative therapies so pour forth!
        She has severe swelling behind her eyes, is extremely light-sensitive,
        has developed a case of severe acne after an adolescence with a lovely,
        clear complexion, has two or three head-aches a day (she takes Goody’s
        Powders — are any of you Southerners? — which seem more effective than
        anything else she has tried), does not take birth-control pills, is definitely
        an insomniac, has lost weight even though she eats well (she has always
        been thin so it is not so obvious with her), and experiences all the usual
        signs of depression/stress/feeling unsupported: highly sensitive, easily
        hurt feelings, anger, fearfulness. She is hyperactive when she is awake
        and tired even though she sleeps many hours. She is a full-time college
        student so at least she has the advantage of pacing herself on a schedule
        that works for her. Oh, and her temperature gauge is certainly off kilter:
        hot flashes constantly, going to the thermostat several times an hour to
        try to find the magic number. Her heart pounds so that you can actually
        see it under her clothes.
        Sorry for going on and on. Will be lurking here, hoping for some magic,
        and eager for any information/experience/suggestions you GD angels
        can supply. BTW, I am hypothyroid, have been since cancer/hysterectomy
        at age 38/PBC diagnosis in 1985. I am somewhat confused about your
        comments about the dangers of going from hyper to hypo ??? The little
        blue Synthroid pill I take every day seems so innocuous and I have never
        worried much about it: it relieved the symptoms of the hypo and my tests
        remain right where they are supposed to be? What’s up with the concerns
        about going hypo? Given a choice I would choose it over hyper any day?
        Do you know something I don’t or it the concern specific to GD ? So many
        questions, so little time….
        Many thanks for listening.

          Post count: 93172

          Dear Liz’s Mom:

          I’m glad you chimed in with your experience on being hypo and getting thyroid replacement hormone. It is a topic about which many of us have a large fear, but I think it is just that, a fear and not necessarily a reality. From postings to the board particularly, there seem to be some individuals who do not feel the way they want to feel on hormone replacement. There is also, apparently a small percentage of people for whom the replacement hormones do not work well. So this possibility enters into our thinking when we contemplate going for RAI and deliberately making ourselves hypothyroid. We don’t, unfortunately, have accurate numbers, percentages to go by, but instead the anecdotal accounts of people who have problems balancing out on the replacement. When you are sick as a dog hyperthyroid, the very thought of trading one set of problems for another that might seem equally bad, makes the decision very, very hard. But, like you, my experience being hypo and on replacement has been relatively easy.

          I have a number of thyroid site addresses in a file, so I’ll email you with some of them, so you can do more research for your daughter. I would also suggest that if there is a good endo around you, that you seek a second opinion, if your daughter is willing to do that. It has to be difficult to have various people giving her added stress about who should treat her. If she is not comfortable about her treatment so far, she has the absolute right to seek help from another, perhaps more qualified doctor.


            Post count: 93172

            RAI or any other treatment for hyperthyroidism will not necessarily
            bring you into the realm of hypo. There is some controversy over
            whether the normal course of GD eventually reaches hypo stages, as if
            the thyroid finally ‘burns out’ from overwork.
            I had surgical treatment for hyperthyroidism and was not hypo until
            after my second thyroid surgery over ten years later.
            Most people do well on any of a large variety of thyroid replacement
            preparations, if they need them at all.
            The most commonly used during the last few years is levothyroxine or T4
            which is one of five hormones the thyroid makes on its own.
            T4 is not the biologically active form of thyroid hormone and your body must
            convert it to T3 which is the hormone which is actively works in the cells
            of your body.
            No one is checking to see if that is happening and for some of us it is
            not. That leaves us with the misleading situation of great TSH and T4
            blood tests but no response to the hormone in our bodies.
            Unfortunately, there is no recognition among physicians that this can
            occur and therein lies the danger. No recognition means no tests, no
            treatments, no research, no doctors, no help at all.
            However, this form of thyroid disease is rare, but then again no one is
            looking for it.
            Severe hypothyroidism results in premature death; from clogged arteries,
            diabetes II, strokes, heart attacks, and a variety of mental and physical
            illnesses. And I assure you that this is not our imagination or just –
            anecdotal stories.
            I don’t mean to scare you because the majority of people can get a replacement
            dosage that gives them a normal life.

              Post count: 93172

              Bobbi – Can you share these thyroid sites with all of us?

                Post count: 93172

                My 18 year old daughter has been diagnosed w/hyperthyroidism but we haven’t yet learned what’s causing it. She has her first scan & uptake this Mon/Tues. The doctor hasn’t said Graves Disease but she has the bulging eyes. Is bulging eyes exclusive to Graves Disease? She hasn’t had her period for 6 mths. either. My biggest concern is she is one of those that gains weight w/hyperthyroidism. We’ve been to see a nutritionist and she’s not taking her diet serious. She thinks if she eats lots of salad and fruit she’ll be fine. She’s not eating enought carbs to help her energy level. She’s also wanting to stay out until midnight or later every night. What’s the general consenses on sleep and how it does/doesn’t affect symptoms? Particularly emotions. She was emotional to begin with now she’s driving us all crazy with the tears and ‘end-of-the-world-and-life’ reactions. The doctor says he believes she has lymph-nodes and he suspects we’ll to iodine treatments. Any advise … I believe we really haven’t been told to much until he has these test results. Thanks & God bless.

                  Post count: 93172

                  I was dignoised with Graves disease when I was 20 years old, I’m now forty years old. Let me tell you it was a scary time for me and my family, so I can understand what you and your daughter is going through right now. I just wish I have someone I could talk with then, just to know what may happen and for the moral support.

                  My best advise for right now is to take it one day at a time until your daughter has had all the necessary tests to see if it is Graves Disease. One thing is your daughter must eat correctly and get her needed rest, because if she does have Graves her body is already working overtime as it is.

                  Let me reassure you and your daughter that Graves is treatable and you can have a normal like. When I say normal, she can attend college, hold down a full-time job, marry and have a family, and just have all around good time and have fun. Your only limitations is that you have to be careful in what you can take for a cold/flu, etc., but your family doctor should be made aware when she has a confirmed dignosis of Graves.

                  If your daughter, or you, would like to correspond with me, I encourage you to feel free to contact me at I will be glad to answer any and all questions you or your daughter may have.

                  I wish you and your daughter good luck in her tests and there are many out here that give you the support you need at this time.

                    Post count: 93172

                    Bulging eyes used to be specifically associated with Graves’ disease. But doctors have recently started thinking of it as a THYROID disease issue rather than a HYPERthyroid disease issue. So you can have the eye disease without having Graves.

                    Your daughter’s eyes may not be bulging, however. With too much thyroid hormone, the upper eyelids tend to pull tight, and retract. That can give the impression of bulging without there being actual protrusion of the eyes from the eye socket. Only an ophthomologist can tell you for sure what is going on.

                    Regarding sleep. You cannot sleep when you have too much thyroid hormone coursing through your body. Insomnia is a VERY common symptom. You will be dead tired, but if you do fall asleep, odds are that you will wake up in an hour or two, and not be able to get back to sleep for a while. So your daughter simply may not be able to sleep, even though she may be tired.

                    I cannot imagine having to deal with a teenage child having this disease. My heart goes out to you. Your daughter is undoubtedly on the verge (if not already there) of thinking of herself as an adult. So how much of your input will be received, and acted on, is really a big question mark. I do with you both good luck, and good health for your daughter, soon.l

                    Bobbi — NGDF Asst. Online Facilitator

                      Post count: 93172

                      I am worried about her eyes because about 2 weeks before she was diagnosed her eyes were severely bloodshot for about a week. I thought it was conjunctivitis although there wasn’t all the puss/crusty stuff that usually comes with it. I don’t see any lid retraction yet – Is this the beginning of that progression?

                        Post count: 93172

                        Do watch her eyes, and get a baseline exam with an ophthy specializing in Graves, but don’t panic. Few people get terrible involvement, most just minor problems. Redness from dryness is easily helped with artificial tears.
                        Good luck,

                          Post count: 93172

                          my 21 yr old who is 3.5 mo. pregnate has just been diag w/hyper thyroid her blood test came back at .7 so they put her on ptu 2x a day with more tests to follow her heart rate is what got ob eye plus she only weighs 126 @5’8″ she has just put 6 pounds on in 2 weeks she had lost weight first 2 months the constant sick feeling got the best but she seems better now heart rate is down at last look. dr worried about graves but looking at symtoms oh my Im sure she has this. I will get readin on this and go to Dr. appts with her she is feeling very overwelmed right now she has had 2 miscarrages and is very worried about graves. this is all new to us so any advice would be great.

                            Post count: 93172

                            dear ammom: I wish your daughter well! This must be a scary time for you, too. I your daughter does not mind, going to her doctors visits will help you understand what is going on and what types of treatments and things she may go through. It may also help her to keep it together knowing you are listening and understanding what the doctors are saying. I have found that this bulletin board and the facilitator have been a tremendous help. Good luck to you and your daughter.

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