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  • Anonymous
    Participant
    August 11, 1996 at 11:43 pm
    Post count: 93172
    #1169001

    I am interested in any information regarding the eye disease associated with graves. I know about the surgery but I am interested in any alternative treatments. Thanks

    Anonymous
    Participant
    August 12, 1996 at 5:16 pm
    Post count: 93172
    #1169002

    Would like contact at national Graves Disease organization – address and phone no. – and also any info on support groups in the Seattle, WA area. Thanks!!

    Anonymous
    Participant
    August 12, 1996 at 11:47 pm
    Post count: 93172
    #1169003

    My sister was recently diagnosed with Graves. The most major symptom she has experienced as been a rash which includes her face. She went to more that one dermatologist before getting the thyroid diagnosis. She was even diagnosed with lymphoma and then a panel of 35 AMA doctors said “no” to that diagnosis. She has just begun the treatment for Graves. She has no eye symptoms at present and the Endocrinologist said she won’t get it since treatment has started. She also has joint pain and fluid retention in the ankles. She thinks that with the treatment it’s all going away, but from what I’m reading, she’s not out of the wood yet. Is there a cure?

    Anonymous
    Participant
    August 13, 1996 at 12:59 am
    Post count: 93172
    #1168990

    IN MUCH NEED OF A SUPPORT GROUP !!!I HAVE HAD
    RADIOACTIVE IODINE.NOW FEELING QUITE SLUGISH AND
    POOR. I WOULD APPRECIATE ANY FEEDBACK.

    Anonymous
    Participant
    August 13, 1996 at 2:40 pm
    Post count: 93172
    #1168991

    What have you learned about the surgery for
    orbital decompression? Do you know of any
    doctor or hospital that is specializing in
    this? Thanks in advance for any information
    you can provide.

    Anonymous
    Participant
    August 13, 1996 at 7:58 pm
    Post count: 93172
    #1168992

    The surgery for orbital decompression involves removing the bone between the eye orbit and the sinuses is removed. For more information go to: http://WWW.mayo.edu/Mayo_Ophtho/Graves_info.html
    Has your disease been in remission for a while? They say the eye disease burns out after a while. Mine hasn’t. But now I am sick again after my first radioactive iodine treatment and they won’t touch my eyes until I am in remission again for at least 6 months. The procedure I am interested in is the x-ray aimed behind the eyes to reduce the swelling. Barbara Bush has had this and she looks a lot better. If you find out anything else, please let me know. Good luck and I hope the url helps some.
    Denise

    Anonymous
    Participant
    August 13, 1996 at 8:17 pm
    Post count: 93172
    #1168993

    I know just how you feel. Don’t worry, you will start to feel better. How many rads did they give you? How long ago did you get the treatment? I had mine in January and it didn’t quite stck so now I must have another one. I am not looking foward to it but I know it does work and I will eventually feel better. I am sure you will as well. Good luck and write back if you like.
    Denise

    Anonymous
    Participant
    August 13, 1996 at 10:56 pm
    Post count: 93172
    #1168994

    Hi Denise! A big THANK YOU !!!for your follow up
    letter. Just having some support makes a person feel quite
    better. Unfortantly, being a person of little medical
    knowledge I paid no attention to the rad. rate. I
    Had the treatment done last Nov. I’m sorry to
    hear that you”ll have to do it again. Hopefully
    this time it WILL work for you. Please keep in touch,I’ll
    I’ll keep you in my prayers. P.S. How are your eyes ??
    Again thanks for your support!
    Katie

    Anonymous
    Participant
    August 14, 1996 at 10:30 am
    Post count: 93172
    #1168995

    Dear Katie,
    Maybe you have become HYPOactive now. Have you asked your doctor? I know the chances are quite high, as a matter of fact the doctors kind of expect it. Hypothyroidism is easier to treat as well.
    As far as my eyes are concerned, they were getting better but now that my levels are back up again they are worse. The doctors won’t touch them til my thyroid is under control, for a period of time. This disease sure does suck huh! Do you have the eye disease?
    Thank you for your prayers. Your in mine as well.
    Take care, Denise

    Anonymous
    Participant
    August 14, 1996 at 11:27 am
    Post count: 93172
    #1168996

    I would appreciate any information about orbital decompression surgery – particulary from anyone who has had it.Also, is there an online opthamologist who specializes in this area that is willing to answer general questions.I have a good doctor at UCLA but still am a bit wary about the surgery – I’d rather have good sight than risk potential double vision for mostly vanity reasons – However, I admit if it was being done successfully I’d probably try it. Please e-mail me

    Anonymous
    Participant
    August 14, 1996 at 11:55 am
    Post count: 93172
    #1168997

    Hi Denise!Once again, thank you for your message.
    Yes, I do have the “bugged”eye look,and my doctors
    like yours would rather wait and try to control
    my disease first.In my drivers license picture I
    look like a monster !!!
    Have you taken the radioactive iodine yet???
    I’m on my way to the doctor this afternoon,so
    I’ll let you know how it goes! Best wishes always,
    Katie

    Anonymous
    Participant
    August 15, 1996 at 6:52 pm
    Post count: 93172
    #1168998

    Ann,
    Call Dr. Nancy Patterson at 704-877-5251 or write her at the National Graves Disease Foundation
    2 Tsitsi Court, Brevard NC 28712. I told her you would be giving her a call.
    She will be able to help you out and she is
    interested in talking to you.
    Regards,
    JAke George

    Anonymous
    Participant
    August 15, 1996 at 7:06 pm
    Post count: 93172
    #1168999

    Katie and Denise,
    I am glad the two of you helped each other. I too
    have had the bug eyed look. I have gone through
    orbital decompression on both eyes. Send a self
    addressed envelope to the National Graves Disease
    Foundation/I at 2 Tsitsi Court, Brevard NC 28712.
    You can E-Mail me or call me at 407-254-9719 and I
    will try to answer your question or put you in
    touch with a support group in your area
    Regards,
    Jake George

    Anonymous
    Participant
    August 15, 1996 at 9:04 pm
    Post count: 93172
    #1169000

    Hi, I was diagnoised in March 96 with graves. It’s really
    sucked since then. I have done the radioactive iodine
    and I am now taking a synthetic hormone called
    levothroid. I’ve been taking it since June. I feel really
    tired a drug out now, and I have gained alot of weight
    I contacted my doctor last month ( July) and told him
    how I felt. He checked my blood and said my levels
    are within normal limits.??? I am contacting another
    doctor for a second opinion just so know that I’m doing
    everything I can for my health. I noticed that alot of
    diet pills can’t be used by us. I was also told that it
    might take 12 weeks or more for this med, I’m taking
    ( levothroid )to work is that true? I live in Bakersfield , Ca. and
    I don’t know anyone who can relate to this stuff, I am
    sure glad I found this spot!!!!!!!! Thanks Gail.

    Anonymous
    Participant
    August 16, 1996 at 10:33 pm
    Post count: 93172
    #1168988

    Tim,
            I answered you message a while ago but it
    does not seem to be in cyber space anywhere so lets
    try again. There is a support Group in upstate NY.
    Call Susan Salerno 315-682-5149. She runs the
    National Graves Disease support group in that area.
    Regards,
    JAke George

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