Diagonosed with Adrenal Failure information anyone with info.?

Discussion in 'Fibromyalgia Main Forum' started by app5775, Apr 18, 2007.

  1. app5775

    app5775 New Member

    Well as they say if it ain't one damn thing its another. Although I guess its good I suggested to the doctor to test me for adrenal function a few weeks ago. Much of the information I found about those of us with fibro/ CFIDS and adrenal problems I read right here on the board. We are very blessed to have such a wide range of information here and great people. I told my doctor of my symptons on top of the usual fibro/CFIDS problems I also usually feel extra crappy in the morning and have as of late been very sluggish, more usual. He had blood test run at 8:00am and 3:00pm. The results came back that my adrenals were bascially nonworking..... zilch...Within the last week I've gone downhill rapidly. This may or may not have been an ongoing malady since I've had very bad physical and emotional tragedies over the course of years. I had almost died from a drug reaction to antibiotics called Stevens Johnson syndrome some 20 years ago along with emotional tragedies. So I wonder if over the course of years the adrenal issue had been adding up, sort of depleting and destroying the adrenal gland gradually so to speak. My doctor also tends to blame the Epstein Barr virus. I've just started my treatments of cortisol. My questions are to those of you with adrenal problems. How are you doing with your cortisol prescriptions? How much have you been prescribed, how long have you been on it, can you be weaned off so to speak and how are you doing overall? Can a normal healthy life be expected living with adrenal problems? thanks for any suggestions.
  2. Waynesrhythm

    Waynesrhythm Member

    Hi app5775,

    I’ll refer you to a recent thread I started entitled “Low Dose Cortef/Hydrocortisone Experience – Jeffries Protocol”. A good number of people contributed and made excellent comments on it. It’s basically a therapy (I feel a very safe and effective one) to address adrenal insufficiency/failure. Many good points were also made about hypothyroidism. Many (most perhaps) of us with CFS/FM have one or both of these conditions.

    To answer some of your specific questions: I have been doing really well with my low dose supplemention of cortisol for about 8 years now; I take about 20-25 mg./day of Cortef (bioidentical cortisol); Some people can wean themselves off of it, though not everybody can; Can a normal healthy life be expected with adrenal problems??? I don't know the answer to that one, but I surely remain optimistic and feel I will one day again reach that lofty plateau.

    Best, Wayne[This Message was Edited on 04/18/2007]
  3. TXFMmom

    TXFMmom New Member

    Could you have been given steroids, unwittingly?

    I had cortisol levels of exhaustion last year and we traced it to facet joint injections. However, it took five months more for my levels to reach anything nearly normal.

    It is ironic, however, to hear you speak of Stevens Johnson syndrome, as I too, had one, and they are rare.

    I was a medical professional and when I awakened with hives over nearly my entire body, I was rushed to the hospital and started immediately on massive doses of steroids and antihistimines IV and I did not loose my vision or develop the sloughing, but I was desperately ill for nearly a month.

    It took me nearly another month to ease off the steroids and the antihistamines, and even then, my muscles ached and ached and I was exhausted, and I felt as though I had overexercised immensely. I now have FM, and my muscles feel very similar to what occurred then.
  4. app5775

    app5775 New Member

    Thanks all for the replies. Yes I do remember your thread some time ago, Wayne. I had started to read it but at that time I wasn't sure if my adrenals were exhausted. I just asked my doctor to check and see my what my cortisol levels were a few weeks ago. Low and behold there was no registered cortisol level in my blood. My symptons were getting very bad. I just started on cortisol yesterday. I do feel some better already but I don't like being on anything any longer than I have to. So I guess I'll have to take things as they come. As for the other responses about Stevens Johnson syndrome. Yes I was quite fortunate that I'm not blind let alone still living. Yes indeed there were angels there. I was in the hospital for a month. It took me a year to recover but I've always thought alot of my issues stem from the nightmarish episode. I had sloughing, major inflammation, growthes over my eyes, extreme 105 temp. I lost my fingernails and toenails twice just to name a few maladies. I was a medical marvel at the Medical College of Ohio. I did not have the outer skin lesions thank God. We really should start a thread on that awful syndrome. Although its rare, it can happen to anyone. Interesting foot note. My grandmother died in 1937 from at the time "unknown causes" due to a scarelet fever plague so to speak and whatever she had been given as a medication to "fight the disease". She died from some rash and it was labeled "malignant eryothymia ( not sure of spelling)......today it is called as we no it, Stevens Johnson Syndrome. It is and can be genetic to be predisposed to it. I just found that out this year. It was so interesting for us to learn she died from what I had also encountered.. Drug reactions and the like are very dangerous. I wonder too along with my Epstein Barr, just how much damage was left because of it. Perhaps over the course of years my adrenals slowly stopped working. I don't know.