What if I really dont have Adrenal Insuffiency or Addisons?

Discussion in 'Fibromyalgia Main Forum' started by shellydp, May 27, 2010.

  1. shellydp

    shellydp New Member

    Hello all,

    I started this journey six years ago and still have questions. I was diagnosed last month with Addison's by the ATCH / Stim test. However, my doc tested me while I was taking cortef. Now, I am questioning my diagnosis because of that. I hate to think that I am taking Cortef if I dont need it. My symtpoms are difficult and some respond to the cortef on some days then not on other days. It is still really up and down. Which also has me questioning that.

    Can anyone tell me what I would feel if anything if I am taking cortef and don't need it?
  2. SnooZQ

    SnooZQ New Member

    Hi Shelley,

    Adrenal Insufficiency/Addison's is a pretty major DX, not a small thing to live with, and requires a fair bit of adjustment.

    You seem to be questioning your DX -- do you think there were irregularities with the test? I suppose you could ask for a second opinion on the test results. At the very least, obtain the hard copy test results for yourself & study them.

    Stim test result interpretation can be fairly complex, with different degrees of Adrenal Insufficiency (AI) possible -- Primary, Secondary.

    When people take Cortef & do not need it, they may feel the symptoms of hypercortisolism, which you can research.

    Note that, depending how severe the AI is, some people dose Cortef 4X per day, others just 2X or 3X per day (with different dosing schedules for trauma, stress, illness, etc.).

    Are you on any other meds/replacements? Sometimes people with AI do better with a combination of DHEA (another adrenal hormone) plus Cortef. DHEA increases feelings of well-being, and in some types of AI, DHEA is low as well as the cortisol.

    Not everyone with Addison's does best on Cortef. Some people do better with other cortisol-related meds/formulations.

    I WOULD caution you to not go off your Cortef cold turkey, nor to do so without further medical consultation & supervision. Usually cortisone-type meds are slowly tapered down.

    To balance out your concerns that you could be getting a med that you don't need, be sure to research what happens in Addison's disease when appropriate meds are NOT taken. Adrenal insufficiency crisis can be life-threatening.

    Best wishes.
  3. gapsych

    gapsych New Member

    What kind of Doctor are you seeing? You really need to see an endocrinologist to determine whether you have Addison's or not. It is not something to be taking lightly, as I am sure you are aware.

    The ups and downs are worrisome.

    Keep us informed.


    ETA This looks like an informative website.

    http://endocrine.niddk.nih.gov/pubs/addison/addison.htm[This Message was Edited on 05/27/2010]
  4. shellydp

    shellydp New Member

    I am seeing an Endocrinologist. He performed the Stim test and detemined that I wasnt producing any cortisol. I do have copies of all my tests for the last year and I looked at the results as well. My cortisol level didnt move at the 30 or 60 minute mark.

    I'm just questioning how definative the ACTH Stim test is though. I thought it was absolute. That is what I was hoping too. I don't want to question if I might have something else. With Addison's or Adrenal Insuffieceny, the cortef isnt a magic pill that makes anyone feel like a new person when they start taking it. So, since I have been taking it I see some improvements but I am definately not feeling optimal or even well. Which makes me start questioning my diagnosis again.

    I went for a second opinion but it was to a mainstream endo who stated that if my thyroid labs and my cortisol labs were a low normal that she wouldnt treat me. She also stated that the Stim test was done incorrectly in her opinion and I should wean off HC and redo the test. But, I read on another forum that it didnt matter if you were on HC at the time of the test because the drug they inject you with was enough to get a dead horse moving so it should show on the stim test. Which is what my current endo said as well. I just don't know who or what to believe.