Addison's Disease Support Group

Addison's disease (also known as chronic adrenal insufficiency, or hypocortisolism) is a rare endocrine disorder. It is estimated that it affects about 1 to 2 in 100,000 people. It occurs when the adrenal glands, seated above the kidneys, fail to produce enough of the hormone cortisol and, sometimes, the hormone aldosterone

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  • TwoBoyz

    Trial of cortisone

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    Hi all,Based on my symptoms that I've been dealing with for years, all of my doctors think it is my thyroid or adrenals, but then they run the tests and all is perfect.  A new doctor today wants to try me on cortisone for a week.  She said if it helps then we know it is my adrenals.  She said lab tests and acth stim tests aren't always the defining answer.  I'm really scared to take steroids...
  • AndreaVF

    Addison's and Type 1 Diabetes

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    Hi all. I'm glad I've found this support group forum. I'm a 28 y.o. female who was recently diagnosed with Addison's and who has had type 1 diabetes for 16 years now. Two full time autoimmune diseases but hey, what can I do. It would be nice to speak to someone, anyone with similar conditions or the dual diagnosis that I have. Generally I'm optimistic (or in denial) because I find it a burden to...
  • deleted_user

    Idiopathic Isolated Acth Deficiency

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    *I have posted this here as well as my journal in hopes that it may be happened upon via the magic search engines!*Isolated Idiopathic Acth Deficiency is a very rare condition; one of which I've researched extensively but have found few that personally have a grasp of it. I have compiled this post in hopes that I may be blessed with input from others who have any knowledge or experience with this...
  • spadeweb

    Dominos

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             Seems that I am falling apart, every time I go to the Doctor they say; the test shows that your body not producing enough of this or too much of that... This last week it was low testosterone and Diabetes to add to the list.  Your Hydrocortisone levels need to be raised but your blood sugar level is at diabetic levels so let’s get that down before we do that. We will raise the...
  • learningtolovemack

    New diagnosis

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    I am 16 and my doctor thinks I have Addison's disease.  He is starting me on fludrocortisone to help me retain sodium.  I am passing out too frequently so I am really hoping this works.  Has anyone else been on this med and how well did it work for you?
  • Hey folks!Thought I would bounce this off of ya'll to see what your thoughts are: I'm a 21yo with numerous health problems, some diagnosed some undiagnosed. I've dealt with severe chronic fatigue for the past year, and have been to the ER numerous times within the last several months, more recently for not having the energy to eat/drink or take care of myself properly. Anyway!My doctor ordered a...
  • JudithPoodith

    Is it harmful to take a.m. dose early afternoon?

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    Hi,I'm a very late riser in the morning, I always have been. I do not sleep well for various reasons (reflux, respiratory, etc.) and I absolutely need the morning sleep. When I started on HC, the doctor didn't warn me not to go back to sleep after I took them, and so I would awaken early, take them, and they made me nice and drowsy, so I'd fall back to sleep. Well, I ended up with a very bad...
  • Darla40

    Scared to take solu-Cortef shot

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    Hi, this will be my first time taking solu-Cortef shot( that large of amount) plus I will have to double my Cortef, ( currently take Cortef 35 mg daily) I'm scared to be honest, I've never taken this much b4, what's ur experience with having to take so much, plus doubling my dose, I'm scared it's going to make me feel bad and give me side effects, although I'm sure il need it. Thanks in advance...
  • iwontbackdown1

    IS ANYONE POSTING, VIEWING, SOMETHING NEW HERE???

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    I see "10 months ago".....blah, blah, blah....the same thing Months with numbers in front....I have Addison's Disease. I'd like to listen, talk, learn, be here, be heard..IS ANYONE OUT THERE AND WILL ANYONE COME IN FOR THE "NOW?"Thanks....
  • Summertime003

    Increasing meds

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    HiIve had addisons for 9 years and generally stay well now, with daily doses of hydrocortisone and fuldrocortisone , together with thyroxine for my low thyroid levels. However when I get an illness it hits me hard and I have to double up quickly my hydrocortisone. But how long do I need to stay doubled up for ? It's a tricky process of coming down off them to the normal level again. Just...
  • Rhondafaye42

    Adrenal insufficiency

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    Hello all, I have a questionHow hard is it to get on disability with adrenal insufficiency ?I have only been diagnosed for two months but this has been going on a lot longer, I know at least 2 years probably longer than that. I have not worked much throughout my life I was very blessed to be able to stay home and raise my two boys , now 20&23I went back to school and am now a CNA, PCT and...
  • deleted_user

    I am writing an essay.....

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    And my goal is to get the voices of others into my paper. I am a young woman and have Addison's Disease. I am in college full-time and I find living "normal" to be impossible for reasons I will get into after I hear what others have to say. Would you say you can live "normal" with Addison's disease? If so, why? and if not, what is making it difficult for you to feel "normal"? Any input would...
  • Hi. I have a question which may have already been addressed. I was diagnose with Addison's Disease in 2003 after nearly dying. I was put on Prednisone (5mg) and Fludrocortisone (0.1mg) and have taken that every day since the diagnosis. I am trying to find information on joint and bone pain associated with Addison's Disease. I was told I have severe osteoporosis, caused by the many years of...
  • deleted_user

    Severe burning hands?

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    I've got a new problem that I haven't a clue what to think about. I have an appointment with a neurologist soon, on the 27th. Hopefully he can figure this body out. I sure can't. I wake up at all hours in the night with horrifically severe hand numbness, tingling, and like my hand/s are literally on fire. It feels like somebody is torturing me by burning my hands. Along ith the burning feeling my...
  • deleted_user

    Very low cortisol, and fatigue

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    Is there anything else that can cause low cortisol? My cortisol is always very low at 0.7 ug/dL AM but I cannot seem to get a diagnostic. Any advice? Do you have to have visible damage to the adrenal cortex to have addison's or is a low production of cortisol enough? I have all the symptoms, and the rest of my hormone levels are normal.