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  • Anonymous
    Participant
    Post count: 93172

    It might help if you tell us where you are located ;)

    Anonymous
    Participant
    Post count: 93172

    Hi,

    Your letter points out the importance of not just selecting an Endocrinologist but one who SPECIALIZES in Graves. I’ve found that these days, even G.P.s will occasionally try to treat Graves. They seem to tend to the more drastic kinds of regimines. I was lucky enough to find a Graves specialist in northern CA, where I was living at the time. If you go through the list of Graves specialists in our website, I’m sure at least one of them could recomend someone in or near your area. Don’t give up the ship.

    Anonymous
    Participant
    Post count: 93172

    Hi Midge,

    Wish I could tell you what you want to hear. I have also gone
    through exactly what you talked about in your post. Now your
    post is one I wish there was an e-mail address on. The one
    year I came off the prednisone I saw like four endos and they
    all said the same thing. If my numbers were OK then it must be
    something else. I even had to get pretty upset and proactive to
    figure out what was wrong with me. None of those endos seemed
    interested in helping me get to the bottom of the reason why I
    was so fatigued out. This BB gave me the insight to the reason
    I was going through the fatigue problem. Someone else was able
    to share their experience and knowledge about the prednisone.

    I have been reading the BB for almost two years. There was even
    some chat one month (when I can’t remember) about questions a
    person came up with to use to interview endos. I don’t even
    remember if it worked for her. Another tip shared on the BB is
    to actually make an appointment to interview the doctor before
    they decide whether or not to use their services.

    When I get frustrated I think about how the doctor at the NGDF
    conference said last year how they could write two pages on what
    they do know about Graves’ Disease and volumes on what they
    think. In my case I get more feelings going on because I have
    the Fibromyalgia (FM) and Thyroid Eye Disease (TED) autoimmune
    stuff in addition to the Graves’ Disease that I had treatment
    for by having the RAI.

    Send me an e-mail and maybe we could chat a bit more.

    Take Care,
    Michele B. :)

    Anonymous
    Participant
    Post count: 93172

    Right now I’m going through the process of trying to find a new doctor (before I do RAI, since I want to find a doctor I’m happy with before I destroy my thyroid, and become dependent on them for the rest of my life).

    I decided that I want a doctor who only treats thyroid disease, because I hope they’ll be more expert and interested in fine-tuning my treatment beyond just getting me into the “normal” range (I’ve been “normal” for 6 months, but I still feel bad).

    I started by calling physician referral services for the local hospitals, and asking for the names of doctors who only treat thyroid conditions. From that, I got 2 names. I checked them out at the AMA website, and discovered that one had graduated from med school in 1947, which would make him nearly 80 years old. I ruled him out, but made an appointment with the other doctor.

    Meanwhile, I’ve also been looking through medical journal articles, to see if any of the study authors are local. Turns out that the doctor I have an appoinment was cited in a footnote for some of the work that he’s done (encouraging).

    I did a web search on the same doctor’s name, and he came up listed as being on the editorial board of a thyroid journal. Also on the editorial board was the name of another local doctor. I’ll be trying to track her down.

    I’m hoping that I can find 4 or 5 doctors within a reasonable distance, and making an appointment with each, to see which I like best.

    I also asked a hypothyroid friend for a recommendation — she loves her doctor, but to me he sounds like just another endo, so I think I’ll pass on him.

    Hope this gives you some ideas of ways to try to identify a doctor. Good luck.

    Anonymous
    Participant
    Post count: 93172

    Hi all,

    I can’t seem to find an endocrinologist in my area
    who is supportive. My experience has always been
    a negative one with endocrinologists:

    1) They spend all of about two minutes (not including
    the quick physical assessment of the patient
    at hand), discusses the issues with a student doctor
    as though the patient were not there (or doesn’t understand
    what they’re talking about).

    2) They ask you to enumerate symptoms (some of which
    have been quite frustrating for a while and that you’d
    hope there’s an explanation for) in under 10 seconds
    or you get the ignorant nod and a patronizing “umhm”
    and a quick change of subject. Huh? It is their job
    to help. If I were to do that at my work (a public service
    oriented position) I think the director would give me
    an unceremonious boot out the door.

    3) I’m afraid to ask more of their time (how much time
    does an average patient have for an appt. anyway?)
    to discuss however briefly my desire to get better
    and my wish for them to participate in my achieving
    this.

    I go from endocrinologist to endocrinologist hoping
    to find somebody who’s going to be actively interested
    in helping his/her patients get better. Consequently,
    I receive not this but just another disappointment
    that signals me to move on in my search.

    Sorry this is so long. I appreciate any help
    you might be able to give! Thanks!

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