Cortisol Scare been on it 1yr 1/2, low dose

Discussion in 'Fibromyalgia Main Forum' started by lillypad2, Nov 5, 2006.

  1. lillypad2

    lillypad2 New Member

    Does anyone know if this is bad for you if you have taken 10 mgs a day for a long time? I get it from FFC but I still worry about it even though they say it won't hurt me.

    Anyone take cortisol all the time? Oh it also helps my asthma! The breathers with cortisol cause me to get thrush all the time in my throat.

    I'm only 41 and don't want to start getting plastic hips. But this stuff helps.

    Any advise?

    Lisa
  2. lillypad2

    lillypad2 New Member

  3. lillypad2

    lillypad2 New Member

  4. alaska3355

    alaska3355 New Member

  5. TXFMmom

    TXFMmom New Member

    You don't say why you are on it, other than your asthma.

    I just learned that I am in adrenal exhaustion, probably because of my pituitary failing. My cortisol levels are so low, the endocrinologist said IT SCARED HIM.

    I had one of my doctors, whom I explained the fatigue, infections, the utter drop in feeling human, AS BEING UNLIKE ANYTHING EXPERIENCED WITH 15 YEARS OF FIBRO, AND HE DID THE CORTISOL LEVEL AND "FORGOT" TO ALERT ME FOR SIX MONTHS, UNTIL MY NEXT SCHEDULED APPOINTMENT.

    If I live, I am going to get even with him.

    If you have demonstrated cortiaol deficiency, then this is a very small dose, AND IF YOU DON'T TAKE IT, YOU SHALL HAVE PROBLEMS WORSE THAN SHAKY HIPS.

  6. Jillian40

    Jillian40 New Member

    Hello Lisa -

    I too have been Rx low dose cortisol by my (Wholistic)MD.
    I go to a Fibro-Fatigue Clinic out of state and she did a
    saliva test on me and my cortisol bottoms out around noon each day with a (less) low reading in the AM.

    What I find is that if I'm in a stressful situation, like getting dental work done or taking an exam, then I shake and it exhausts me by the time I get home.

    This to me is a clear indication that my adrenal gland is producing very low levels and supplementing with a small dose of cortisol is doing some good. Just like anything,
    thyroid for instance, if you are low, then your body isn't
    able to compensate without it, as it would be able to,
    if you had the appropriate production.

    Plus when I got my compounded T4 (Thyroid medication) I read on the pamphlet and it recommended that if the patient is low in cortisol production to first rectify this before administering the thyroid med as they work in tandem.

    I have to admit that I am very very cautious about taking this long term as you are. I think what I've decided is that I will take the 10mg per day in 1/2 doses, AM and noon, with an extra 5mg at noon when I am anticipating an extra stressful situation. Like yesterday I had to sit for a 4 hour exam, so I took a 10mg tablet ahead of time, and found that I didn't shake or feel the usual stress.

    I am going to ask my doc to re-do the test soon so I know if continuing is recommended. I've only been on it about
    4-5 months so far.

    I wish you the best. Asking continued question is what makes you an active part of your health care team. Many folks just passively do what a doc tells them to. Keep asking questions and keep researching and you'll be just fine.

    Warm Hugs,
    Jillian
  7. redhowdy222

    redhowdy222 New Member

    I ahve been taking 10 mg. of cortisone for 15 years. Scary, huh? But, it is the only way I stay walking and talking and not being in bed for 24/7. Thank God it has not harmed me. The doctors are amazed that I have no side effects, and even have had to bump it as high as 60mg. in a bad flare. I definately want to get off of it, and am trying all sorts of alternatives, but so far I have not been able to. As I said, I thank God for His protection in this cortisone situation.
    Cyndee
  8. Slayadragon

    Slayadragon New Member

    10 mg of cortisol is a very small amount. The studies that show that cortisol is bad for you usually refer to using many times this amount (as found in prednisone....isn't that the name of the prescription compound?).

    I don't know if this is confirmed, but my belief is that cortisol tends to repress the immune system some. (Decades ago, I read that Neil Diamond had a cold on the day he was supposed to perform, and got a high-dose cortisol shot for that one night so that he wouldn't have to cancel the show. That's not my only source of evidence by far, but it's interesting to recall.)

    It takes a lot of energy to fight germs. Maybe the cortisol moves that energy to "functionality" instead? Just a guess.

    If it does repress the immune system, I'm not sure it's a good idea for people with CFS to take it regularly. It's becoming increasingly clear that immune problems are at the heart of this disease, and so weakening the immune system further could be counterproductive in the long run.

    My doctor suggests "up to" 20 mg of cortisol per day. I've decided to take it only on days that I know will be stressful, though. Stress forces your adrenals to churn out more cortisol of its own, which is just as repressive of the immune system (if you believe this theory) as obtaining it externally.

    I find that if I do this proactively, I feel much better during the following days (since presumably my adrenals are not as "worn out" from the extra effort). Taking the cortisol after the fact seems to do me little good, however. My theory here is that the adrenals make many hormones in addition to cortisol, and if they're worn out they are less able to make any of them.

    This theory is grounded in some research, but still very much up for debate.

    My new goal is to work as much as I can to improve my immune system or reduce its load (e.g. by getting rid of yeast and maybe bacteria), so that energy is available for other things. Strengthening the adrenals (so that they are able to produce a variety of hormones--in addition to cortisol--relatively easily--is another thing I've tried hard to work on.)

    My observation is that CFS requires trade-offs in every area. I guess this shouldn't be any dfferent....

    Does this make any sense? I could be totally wrong here.
    [This Message was Edited on 11/05/2006]
  9. lillypad2

    lillypad2 New Member

    Alaska3355
    TxFmmon
    Jillian40
    Lisapetrison
    Redhowdy222

    Thank you for all your replies. They are very helpful. Its hard to believe some of you have taken it for 15 yrs.

    I got so bad with fatigue I couldn't get out of bed and yes I am low on Cortisol and more. I go to the Fibro and Fatigue Center in Atlanta. I have to take a lot of pills and I hate it, but I still am working, but I wonder how much longer I can.

    I have good and bad days. My diagnosis are anxiety, depression, fibro, chronic fatigue, and asthma. I would say the WORST thing is the Chronic Fatigue. It really gets me even with drugs.

    I guess I will continue the cortisol and not be afraid. The reason I got scared was my regular Dr. made me take a bone density test as soon as I told him I was taking it. The results haven't come back yet.

    Good luck to everyone with this awful disease and thanks again for replies
    Lisa