re: CFS and severe adrenal insuffficiency or addison's

Discussion in 'Fibromyalgia Main Forum' started by pinkrainbow, Jun 13, 2006.

  1. pinkrainbow

    pinkrainbow New Member

    i was diagosed with addison's disease, my body is not producing cortisol, and is so low i could die, if the replacement hydrocortisol steroid hormone doesn't get absorbed!..dr. says he believes cfids and adrenal exhaustion are one and the same..i am also hypothyroid, and most cfr's are on thyroid meds..but is anyone been told they have ADRENAL INSUFFICIENCY?...i want to know if my situation is atypical, or if there is some commonality with other's with cfs/fm,etc.
    pinkrainbow
    p.s.-dr's opinion motly based on a book called adrenal exhaustion..thanks!
  2. Juloo

    Juloo Member

    I'm on cortisol through the FFC. In the past, working with a naturopath, I've been on licorice and many other adrenal-supporting supplements.

    Since I had ASIs (adrenal stress index tests) over the course of a few years, I could see my cortisol supply heading south. Now I'm pretty much flatlined, but not enough for true Addison's.
  3. pinkrainbow

    pinkrainbow New Member

    i had the acth stim test, and almost arrested..cortisol baseline was 12, then 8(1/2 hour later)..then got the acth stim. and the peak levels were 140,142, 140..instead of the expected 500-900!..
    i saw an endocrinologist, she told me to stop the advair 500mg inhaler, as it could affect adrenal function(nothing in the pamphlet about that!)..but i have, and am having trouble breathing now! and a productive cough...
    i have not heard of the test you speak of..i live in canada..i have heard of the protein binding test, but the endo said 60% of the time it is inaccurate..this morning i will get the test she orderered:
    TSH, FT3,FT4,LH, FSH, ESTRADIOL, PROGESTERONE..
    she didn't specify fasting or not..fasting i am very low, after the cortef(taking it for six months), i am just starting to get into the low normal..they had to adjust the thyroid meds too..i hope other's respond, as this is very important.
    i was diagnosed in 1990..6 years in bed..told every visit i had a low cortisol, low magnesium, etc.,...took mag/cal supplements, but she didn't treat the low cortisol..now i am in the process of getting my old charts, to see how long this has gone on!..could it be since the beginning?..if so i would like to sue her(kidding!..maybe not!!!)
    i hate it when these dr's disagree with each other, have tunnel vision, and don't communicate with each other, and my holistic, gp is moving to israel, have my last visit next week..after 12 years together..he has me on bioidentical hormonal therapy, and i have no replacement, the only gp i can find, knows nothing about cfids or fm, etc. but does the physicals, and deals with the asthma..duh!!!!!!!!!!!
    off for blood work..have a great day!
    pink
  4. WendyC

    WendyC New Member

    I have every symptom of Addisons (Dark skin, teeth, no eyebrows or body hair) but I passed the cort stimulation test. Doctor didn't tell me levels. Very common in cfs I think.

    wendyc
  5. pinkrainbow

    pinkrainbow New Member

    in all my research, the physiological blood levels, are lowest at night when you sleep...so never take cortisol beforre going to sleep if you want to sleep!..then it starts producing around 4 am, peaks by 8-9, decreases in the afternooon, and then almost nothing by bedtime..
    This is the same pattern as my energy, but either the addison's or the cortef(cortisone replacement steroid hormone)..keeps me awake the entire night several nights a week...i also find i have adrenal, get reved up, but no cortisol to calm down, have to take extra when stressed, sick, dental surgery,etc..there are some good support group where i learned a lot at yahoo...only recently occured to me that it mine by a common factor with cfids!
    pinkrainbow
    sleep when you can girl..screw the statistics..wish it worked for me!
    hugs pink

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