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  • Anonymous
    Post count: 93172

    Thank you both for the very insightful posts, Bobbi, that stuff on doctors, etc was incredibly to the point.

    I know what you mean, Caroline about the frustration of treatment. We just have to make a choice and own that decision. Hell, won’t be too many years we’re all gonna bite the big one and no little pill will help us anyway. This stuff is just another pothole in the road.

    Bruce

    Anonymous
    Post count: 93172

    I’m with you. Just as I was diagnosed with Graves, a very good friend of ours was diagnosed with BREAST CANCER! Kind of puts it into perspecitve doesn’t it?

    Anonymous
    Post count: 93172

    HoHoHo Bobbi, I read your message about “what to do” with all the RAI info on it. I’m 47 and also was very sick when I was first diagnosed with graves. It’s been a year now and I do feel much better. But I have been discouraged with the fact that I am not “alot” better by now. I’m curious as to your experience. How long has it been and how do you feel? I’m going to a new endo in Feb. (first appt I could get) because my internist really doesn’t know what else to do with me. I should have been seeing an endo all along I guess, but there aren’t many around here. Anyway my blood levels he said were normal. I just got a copy and it shows that I am just on the border of hypo and normal. My guess is that I need an increease in my relacement hormones, but he disagrees. It also shows that I’m anemic…what a jerk! Well, thanks for listening. I’ll be eager to hear from you. Trish

    Anonymous
    Post count: 93172

    Hi, Trish:

    I can’t be of much help. I’m new to Graves — I got sick in July and was diagnosed sometime in early October, I think (memory does not serve me well these days). I had the RAI the week before Thanksgiving, and have not yet been placed on synthetic thyroid hormone. I have an appointment with my endo on the 30th of this month. So you’ve been a lot further down the road than I have. In the post you were talking about, I was simply trying to point out the factors that led me, in my circumstances to choose RAI as a treatment.

    One thing, though. I do feel better now, than I have felt since coming down the the bad hyper symptoms. But I suspect that this is going to take a lot longer than I would like to feel “normal” again. First off, since the thyroid has a role in every single body function, having it out-of-whack must play havoc with your body. I think it’s going to take a while to get the balance back. I’m also not sure what “normal” IS. How long have I been “hyper”, and thinking that is “normal”??? Before the symptoms got horrendous, that is. So maybe, part of the process is learning to accept a different “normal”? I don’t know. This is one of the questions I’m asking myself these days.

    Anonymous
    Post count: 93172

    Thanks for all that information! I like your logic!

    Anonymous
    Post count: 93172

    You know, when you get to be my age, and it’s cold (34) and windy outside, you sit inside and read and you think about things you don’t normally have time to think about.

    The NGDF home page says that 13 million Americans have Thyroid Disease and that 1/4 of 1% have Graves disease. While that doesn’t sound like a lot of people, it’s 32,500 of us and that’s a lot of sick people!

    There are 100 senators and I believe 496 representatives in the United States Congress. What if each of us that are on here started a letter writing campaign and sent a letter to each of our own senators and all of the representatives from our own state? Can you imagine the amount of mail that would generate? A lot of them have e-mail so that would eliminate stamps! I am willing to do the research to find the addresses, are the rest of you warriors willng to join me in this? If we raise enough noise, maybe someone will hear us! We need funding, and we need research and most of all, we need to be listened to!

    Are any of you willing to join me in this? I am willing to take any flak it might cause. Just give them my name and e-mail address! I just can’t sit idly by and let this disease totally control my life and have so many of my friends in the same boat.

    What do you say, warriors?

    Red Cloud and Crazy Horse and Gall used to get up on the morning of an impending battle and say “You know, this is a good day to die!” Well, we need to change that to “You know, this is a good day to live!” and no one can change it but us!

    Join me warriors!

    Mitakuye Oyasin
    Val

    Anonymous
    Post count: 93172

    sounds quite interesting, i would also like to find out exactly
    how many people have graves in each state! justy curious hope

    Anonymous
    Post count: 93172

    Val,
    I for one am willing to stand side by side with anyone willing to go with the letter writting, to get the attention of the health officials and “the powers that be”. We need help in this battle…I started in a small way by sending an email to a local Doctor who appears on an independant T.V. station here in Phoenix. He has done several stories on people with GD, all of whom did the atomic shake and now “Take One Little Pill” per day and are “Just Fine”. I told him it wasn’t fair to the rest of us suffering from this to tell the rest of the worl that this disease is no big deal. I haven’t heard from him yet, but I only wrote him on Saturday, and it was his “Work Address”, so we will see…

    Pat

    Anonymous
    Post count: 93172

    I’m from Oklahoma……Lisa

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