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  • Addison's Disease

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    Old 02-26-2014, 02:54 AM   #1
    Susanilene's Avatar
    Join Date: Feb 2014
    Location: Jacksonville, Fla USA
    Posts: 2
    Susanilene HB User
    Exclamation Addison's Disease

    Does anyone have experience dealing with Addison's Disease? I understand that there are clinics that specialize in this rare disease (1 in every 100,000 people) but I have had difficulty finding real experts in the field. I do have a wonderful endocrinologist in my hometown who finally diagnosed me after years of being ill and symptomatic. I went into adrenal crisis in January and was hospitalized for 4 days. It is my understanding that the only treatment for Addison's is a daily regiment of oral steroids. I have been struggling with fluid overload for several years now and the doctors are frustrated with my constants need for treatment related to the fluid overload! Even with my diuretics constantly being increased I continue to swell to the point of the skin breaking and cracking at my ankles and on my upper thighs. The doctors are not sure if this is primarily due to Addison's or if this is from the steroids, or perhaps both. I am also dealing with the ugly brown spots that are so common with Addison's patients. However, they are also on my face and even with makeup it is getting more and more difficult to hide these ugly brown spots with makeup. I feel the need to find more resources at this time - I heard of a clinic in New Orleans - Ochsner which specializes in Addison's. I spoke with them last week and they are #23 in dealing with Addison's; I want to know who #1 - 22 are...! Does anyone know a clinic or hospital that specializes in working with Addison's patients. By the way, President John F. Kennedy suffered from Addison's Disease!

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    Old 05-08-2014, 12:41 PM   #2
    jennrichards's Avatar
    Join Date: May 2014
    Location: Hudson WI
    Posts: 4
    jennrichards HB User
    Re: Addison's Disease

    I go to Mayo in Rochester MN.... One of the top three hospitals I the world. Love my Addison's doc there. Maybe try them.

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    Old 05-09-2014, 11:24 AM   #3
    Join Date: May 2014
    Posts: 60
    Jl925 HB User
    Re: Addison's Disease

    Cortisol binds to aldosterone receptors as well. The best choice is hydrocortisone as its bioidentical. If that is causing too much edema then you can go to the following synthetics in order of highest to lowest tendency to cause edema:


    Generally you start at the top and work down...

    Good luck.

    By the way. If you want the best, see:

    Thierry Hertoghe, MD
    Probably the most sophisticated endocrinologist in the world.
    4th generation in this field of practice.

    Last edited by Jl925; 05-09-2014 at 11:28 AM.

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