High or Low Cortisol

Discussion in 'Fibromyalgia Main Forum' started by TerriM, Feb 5, 2003.

  1. TerriM

    TerriM New Member

    Another question for everyone . . . do you have high or low cortisol levels? I keep reading that in CFS people have very low cortisol levels, but mine are very high. I know they vary by the time of day, event going on, etc. But I was just curious . . . Thanks! Terri
  2. TerriM

    TerriM New Member

    This was not the blood cortisol but the urine 24 hour cortisol test.

    The normal range was 2.9 - 34.0 and mine was 60.6 . . . my endocrinologist seemed to think that was quite high. Afterwards he had me do a blood dexamethasone suppression test and I did suppress it which I was told indicates that I do not have pituitary or adrenal tumors which would cause me to be unable to suppress it. Also, they told me that people with clinical depression can't suppress dexamethasone either.

    I was interested in looking more into the cortisol issue, but my endo. said it is a secondary problem coming from the glutamate/gaba imbalance . . . if that could be balanced the endocrine stuff would right itself also. ??

    Does this sound high? From what I've read many CFS people have very low levels . . . I've also heard that over time the adrenals can overproduce and then burnout.

  3. TerriM

    TerriM New Member

    I saw your WOW comment . . . I know that doesn't seem to be a good thing . . . they say extremely high corisol over years and years can actually cause brain damage in and of itself. Also, high cortisol can produce the brain fog symptom all by itself from what I understand. This all gets much worse for me around my period . . . I guess other hormones come into play and make things worse.

    The glutamate/gaba thing that my dr. finally figured out seems to be explained by Dr. Cheney int he library document on Klonopin. My doctor explained that excitotoxicity is caused by too much glutamate/not enough gaba . . . the other term (i forget what it was) that Cheney mentions is N... something which I found out is glutamate receptors, so it is basically the same thing. My dr. just tried me on Ativan vs. Klonopin which sounds like it was the wrong move . . . he is no CFS expert though, but he's really trying to help me. Although he says (and he seems to be a very reliable dr.) he has actually cured some patients with CFS/Fibromyalgia by figuring out the underlying problem . . . maybe most of us are multiple problems, but some just have one?? I don't know . . . also maybe some people are misdiagnosed with CFS when it is actually something else.

    Anyway, I did a lot of research on things in my career and try to find anything I can to help all of us . . . will keep posting whatever I learn . .. that reminds me I need to post the number for the nicholson lab and contact name for finding drs. to perform the mycoplasma/virus testing.

    Take care, Terri
  4. teach6

    teach6 New Member

    After I was denied my disability retirement all due to the bogus report of a psychiatrist the state sent me to my doc was so angry he decided to show him (and them) he was wrong. The bozo claimed my depresssion was worse, but since he only saw me once I fail to understand how he could compare it to anything!

    My doc told me that cortisol runs low in PWC's and high with depression. Mine was also done through a 24 hour urine test and my level was 2. The range for normal according to my lab is 0-50.

    So far we haven't done anything to address this low cortisol, but I do have it on my list for my next appointment.

  5. klutzo

    klutzo New Member

    .....have said that one of the differences between FMS and CFS is that FMSers have high cortisol output in response to stress, and CFSers have low cortisol output in response to stress. Of course, this difference may just be an aspect of a change that takes place during the progression of one illness;I don't know.
    My 24 hr. urine cortisol was normal, but I know for sure that I put out too much over time. How do I know? Because before FMS, I had an hourglass shape, and now I look like I am permanently pregnant. The presence of out of proportion belly fat is almost always tied to overproduction of cortisol.
    [This Message was Edited on 02/06/2003]
  6. TerriM

    TerriM New Member

    I have symptoms of CFS, but not really others associated with FM. I have the high cortisol level, but I know they change throughout the day & the month for everyone. Mine was done around my period when my symptoms are the worst, so that may be was it was extraordinarily high. Per some other posts, I have heard that early in these illnesses cortisol can run high, but then can taper off later to almost nothing. I have read that long-term high cortisol can be dangerous to the brain (almost like an acid over many years) and I have also read that low adrenal output is very dangerous, but that it can be controlled with meds.

    I have not heard the cortisol related to the belly fat issue, but another issue that my doctor said can cause that is insulin resistance. Evidently that is a characteristic sign that doctors see with people who have insulin resistance. Something about your food being stored vs. actually burned as energy. I have been diagnosed with insulin resistance (evidently with the brain issues in CFS/FM) you also get a lot of endocrine issues -- ie insulin, cortisol. From what I've been reading the neurotransmitters in the brain via the HPA Axis control so many things in the body -- temperature, blood pressue, blood sugar, obviously the list goes on and on.

    I have gained a little weight over the course of my illness, but don't have the characteristics they usually see in insulin resistance. Even my initial blood testing showing high triglycerides was thought to be an anomaly (sp?) until bloodwork from an internist a year earlier showed the same level (which incidentally he had said was normal also . . . on that test I showed high glucose as well and he blew that off as normal).

    My endocrinologist has found several tests that other doc's just passed over as normal that were out of the reference range . . . back then I didn't get copies of all of my test records and didn't know much so I took their word for it.

    Thanks! Terri
  7. TerriM

    TerriM New Member

    Good grief . . . how can the reference ranges vary THAT much???? I'm sure it happens all of the time, but it doesn't make sense to me.

    I've also had a problem with labs screwing up tests. When the dr. found out I had insulin resistance he put me on Glucophage (later I became unable to take it because my blood sugar drops low on it -- possibly the hypersensitivity thing). Anyway, he did follow-up blood testing. I got a copy in the mail and he got one at his office. We had a phone consult & started to go over the number. The blood work info. he had was completely different than the one I had . . . the one the dr. had indicated I was in lactic acidosis (a deadly side effect of glucophage) and he had me rush back out to get my blood taken again (only to wait another WEEK for the results). I was fine and the copy I had ended up being correct. My name was on the other one also . . . WONDER WHOSE BLOODWORK THAT WAS . . . scary because they were in trouble!

    In conjunction with the urine cortisol test, my doc had me do another 24 hr. urine test for ketosteroids/ketogenic steroids which has something to do with the breakdown products of cortisol in the urine. The lab took a week getting me the container the first time (needed some special type of acid), then it took two weeks to tell me they screwed up the test and another two weeks getting me another container & another two weeks to process it. My test was fairly normal, but my dr. said it should have been done the day after the other, so at that point it told him nothing . . . WHAT A HUGE PAIN and very distressing.

    I guess these things must happen all of the time . . . Terri
  8. klutzo

    klutzo New Member

    I am so sorry you had to go through all that. It certainly ruins our trust in our doctors and the labs that do the tests.
    Do you have Metabolic Syndrome by any chance? It is also known by Syndrome X or Insulin Resistance Syndrome? There are many previous posts here about Syndrome X and how much diet can help correct it.
    I have been dx'd with it, and have been on a high protein low carbohydrate diet for 4 months now. My triglycerides dropped 239 pts. and my cholesterol dropped 25 pts. in the first 2 months. I also lost 17 lbs., most of it off my oversized tummy.
    I have read that tummy fat can cause insulin resistance, but not the other way around. The way it happens in FMS is the excess cortisol causes tummy fat, which then causes insulin resistance if other conditions are ripe for it (ie. the person eats a high carb diet, or eats a lot of simple carbs, or has a genetic tendency to high triglycerides and low HDL. Of course, the drop in estrogen at menopause can also lead to a dramatic increase in belly fat, and that is when it happened to me.
    It becomes next to impossible to sort all these influences out from one another and figure out what caused something.....it's like watching a dog chase his tail...you just end up dizzy!