The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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High Cortisol Levels - HELP needed

Discussion in 'General ME/CFS Discussion' started by gregh286, Sep 27, 2014.

  1. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    Hi,
    Having been a CFS sufferer for a year the only results I have that show any sign of abnormality is high cortisol and high DHEA, i attached the results.On average my cortisol is around 75-100% higher than the median target over 4 samples.
    I wonder if high readings like this are enough to create adrenal exhaustion and CFS thereafter.
    I am not a stressed person, so no idea why readings are so high.
    Is there any natural supplements to combat this and maybe restore my energy.
    I normally wake up totally exhausted and tend to improve marginally during the day, seemingly relating to my cortisol reducing.
    The longer I sleep, I tend to get worse, which it totally contrary to CFS belief, and with most CFS folk, they have low cortisol so Im totally baffled.
    Any one with help or opinion, it would be very much apppreciated.
    Maybe its a symptom of the real cause, or maybe it is part of the cause.

    Also, when I'm having a real bad spell, i get very thirsty, quite unusual.
    All kidney function tests and blood sugars are normal.
    What a bewildering condition.

    Thanks



    Screenshot (4).png
     
  2. chipmunk1

    chipmunk1 Senior Member

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    do you feel better in the evening or at night?
     
  3. A.B.

    A.B. Senior Member

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    Have you done an MRI of the pituitary?
     
  4. gregh286

    gregh286 Senior Member

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    Evening. Wake up feeling totally wrecked and unrefreshed and gradually improve during day.
    I say improve but thats in context as a cfs person.
    Id go from feeling a 2/10 energywise when I wake to 6/10 by bedtime.
     
  5. gregh286

    gregh286 Senior Member

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    Never had mri no.
     
  6. liverock

    liverock Senior Member

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    Cortisol gets elevated in response to stress or inflammation when there is no regulatory problem such as the pituitary gland or tumours. You should get a CRP test from your doctor to check inflammation level.

    A more mundane reason can be over consumption of tea,coffee and alcohol.
    Try taking 400mg magnesium citrate for a month.
     
  7. *GG*

    *GG* Senior Member

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    Just breaking this up to make it easier to read, lots find this helpful. FYI

    GG
     
  8. Tammy

    Tammy Senior Member

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    Initially, I had high cortisol.........I don't remember how long the levels stayed high..........but eventually they went from too high to too low. I couldn't say if CFS always starts with high cortisol...........I know a few friends who started with high levels as well and then over years are low. There is tons of info here about it.............just off the top of my head.........I've heard that holy basil and phosphitidylserine is good for high cortisol. It's weird about your DHEA levels..............my Dr. actually had me take DHEA to bring down my cortisol levels..........and I've always been confused about that.
     
  9. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    DHEA eventually suppresses cortisol, that's why your doctor had you take DHEA.
     
  10. Sing

    Sing Senior Member

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    ME/CFS has low cortisol. Depression and sometimes FM have high. Just because you have fatigue doesn't mean it is ME/CFS. It could be something else. It is only a hypothesis that ME/CFS starts with high cortisol leading to adrenal fatigue. No proof and one I do not accept. The indicators are that there is a problem with the hypothalamus which passes on the messages to the pituitary and adrenal gland. In ME/CFS there may be nothing whatsoever wrong with the pituitary or adrenal gland themselves. Other illnesses, however, may have the kind of results you are getting on your tests. It sounds to me as though you could benefit from much more of a workup.
     
  11. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Is your blood pressure normal? Have you gained weight recently? Those are signs of Cushing's disease and it could be an explanation for your high cortisol levels. I don't know how sensitive an indicator your midnight salivary cortisol level is. It shows the reference range for a midnight salivary cortisol to be 1.0 - 3.0. Your midnight salivary cortisol is 4.0.

    The midnight salivary cortisol level is a first-line lab test for diagnosing Cushing's disease, along with a lot of other indicators such as weight gain and hypertension. Your endocrinologist would have to see a lot of other stuff happening to you and not just an elevated midnight cortisol to give you that diagnosis.

    IMHO,primary care docs usually don't suspect Cushing's disease to show up, so they may not be thinking of it in your case. Endocrinologists will notice it right off and get to work ordering more tests (and there will be more) in order to see if you have it.

    You can have more than one disease. Even if it's entirely unrelated to CFS/ME, you can have any other disease. You don't become immune to other diseases just because you have CFS/ME. "The patient can have as many diseases as they pleases." Hopefully you don't have this but maybe it's something to consider.
     
  12. gregh286

    gregh286 Senior Member

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    Thanks for that, but no, i dont have cushings symptoms, BP is normal steady 130/75 and weight static.
     
  13. gregh286

    gregh286 Senior Member

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    @Sing according to info on this site, low cortisol is not a precursor to CFS, """Hypocortisolism and CFS: the EvidenceWith 23 studies on it and counting cortisol is certainly the most well studied substance in CFS. The evidence for hypocortisolism in CFS is, however, hardly overwhelming. Of the 23 studies done since 1991 that have measured urinary, salivary or plasma cortisol levels only just over 50% (n=12) have found low cortisol levels. The evidence for low ACTH – the second stage in the cortisol production pathway – is even poorer; only 3/8 studies found low ACTH levels in CFS.

    http://phoenixrising.me/research-2/...gue-syndrome-mecfs-artifact-or-central-factor
     
  14. Sing

    Sing Senior Member

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    I saw that article, which was undated and unsigned. I thought the initial statement about cortisol being certainly the most well studied substance in CFS sounded like hyperbole. Also, what are the quality of those studies, their designs and numbers of patients? A lot of CFS studies have only a handful of patients. And even more basically, who is counted as having CFS? By the overly broad definitions of the CDC, those considered to have CFS are as apt to be suffering from Depression as not, and with depression, the findings on cortisol are the opposite, as this article notes, so the implication is that the overall results would cancel each other out, or at least blunt the findings for people with ME.. How many studies just use the morning blood test, which does not track the functional level? I have heard that the latest big CDC multi-site study does just this--again!

    I didn't say or mean to imply that low cortisol is the cause of ME/CFS. If it were, then the illness would be some degree of Addison's instead. However, hypocorticolism is very apt to accompany it. Using cortisol is not a complete cure for all the many symptoms either, just an improvement.

    There is a later, more thorough article by Andrew Gladman in the section on Phoenix Rising Articles, "In Brief: The Adrenal Glands and ME" from April, 2014.
     
    Last edited: Nov 28, 2014
  15. Valentijn

    Valentijn Senior Member

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    @Sing - Most cortisol studies have been by BPS psychobabblers. They are small trials, with no or inappropriate controls, inappropriate CFS definitions, and heavy spin. They primarily seem to study it as a way to show that CFS is a distinct psychological problem, by comparing it to depression where high levels have supposedly been found. They also ardently advocate against treating ME/CFS patients with hydrocortisone, but have provided one or two weak studies claiming to show some improvement in cortisol levels following CBT. There are no objective outcomes regarding physical ability, of course.

    You're never going to find anything useful in those studies. They start with a conclusion: "CBT is the cure." And then they work their way backward to find or create support for that conclusion. These are not scientific research papers, but rather opinion pieces which take a great deal of artistic license and are always intended to be persuasive, not informative.

    Unless/until some real researchers do some proper cortisol research in ME/CFS patients, I'd consider it to be a dead end. Maybe an interesting subject to ponder, but I don't think there's enough quality data to reach even a tentative conclusion yet.
     
    Last edited: Nov 29, 2014
  16. Sing

    Sing Senior Member

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    I am so grateful to you for your explanation and view! This had been my impression. The article struck me as coming from the Wessaly school of thought, actually. He has been so reviled in this forum that perhaps that is why no attribution was given to this article, if indeed so. Weak science to support a psychiatric orientation.

    Andrew Gladman's piece on The Adrenals and ME in the Articles section was much more informative and helpful. I like the quote which is given in Ema's comment, post #6, from W.M Jeffries, M.D., the author of Safe Uses of Cortisol, who did a number of small studies on low dose cortisol treatment for various conditions including our own.

    I feel very frustrated by the lack of intelligent, larger scale research on this subject. Simply a blood draw for the cortisol level first thing in the am is not conclusive as the problem many of us has shows up during the day with an underperforming HPA in response to physiological need. The fact that once again the CDC has designed their multi-site study to include only an am test for cortisol is to me exactly analogous to their inclusion of only one exercise test, rather than also including a follow up test. That is, however, where the Lights research and our own experience often that our systems will fall down. Over and over again in our history, inappropriate or inadequate tests are given to us, and then when "nothing wrong" is found, they conclude that nothing is wrong, without ever considering that their test designs might have been unsuitable.
     
    Last edited: Nov 29, 2014
  17. Mary

    Mary Senior Member

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    I do have CFS - have suffered from "post-exertional malaise" for the past 16 years. I'm stating this because I tend to have high cortisol - it is possible to have high cortisol and CFS. Some 12 years ago an adrenal stress index showed high cortisol at night, which caused severe insomnia. I also had had severe stress for many years, so it was no surprise for me. What helped normalize my high cortisol was Seriphos (phosphorylated serine), which started to help almost immediately. It's best taken in the morning on an empty stomach. I ended up having to take 8 capsules a day (in divided doses in the morning). It's great stuff.

    Now - as to your morning fatigue which gets marginally better during the day - you very well might have low potassium problems, which tend to be worst in the morning or even middle of the night. I had had low potassium problems for several years without knowing what it was, and it wasn't until I started Freddd's B12 protocol (on this board) and learning about low potassium that I discovered that low potassium was the cause of this bewildering fatigue which was different than PEM. And it. was relieved by taking potassium. When I started taking folate, my energy initially picked up markedly, and then a couple of days later tanked very badly - which was low potassium.

    On blood tests my potassium was always in the normal range, though on the low side.

    I've since found that a number of things tend to deplete potassium for me, primarily things which help me. They just cause my body to use and consequently need higher levels of potassium.

    Most recently I was feeling quite achy in the middle of the night and still quite achy (and tired) in the morning and finally sussed out that my potassium was tanking again - this time from taking copper and DMG and BCAAs, all of which seem to be good for me.

    So if I were you I would try taking potassium. Last night I took some in the middle of the night, was not quite as achy when I woke up but still quite tired, took more potassium every couple of hours and now my energy is better than it has been for several days, and the achiness is gone. Ordinarily I take 400 mg. a day as a maintenance dose, but at times of greater need take up to around 1200 mg. a day. I take potassium gluconate - potassium citrate irritated my bladder.

    Also - thirst can be a sign of potassium deficiency - it really all seems to fit.

    Some years ago I read that in order to have proper potassium levels, our bodies need to move. So the enforced inactivity of CFS would naturally lead to low potassium. I've had to use my self as a lab experiment, but this has been working for me.

    Mary
     
  18. Butydoc

    Butydoc President

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    Hi gregh286,

    How do you know that you don"t have Cushings syndrome?

    Best,
    Gary
     
  19. gregh286

    gregh286 Senior Member

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    hi gary,
    i dont, but dont have typical symptoms associated with it.
    according to most sites, moon face, weight gain, fat around neck and shoulders, high blood pressure.
    I dont fit any of these, exception of fatigue.
    Blood cortisol is fine, saliva is around X2 higher than optimal.
    I think they look for X4 to make a conclusive diagnosis.
     
  20. gregh286

    gregh286 Senior Member

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    @Mary thanks Mary, appreciate it.
    400mg, its like 1 banana worth? Or maybe 400mg in tablet form is much more powerful.
    find it strange max tablet is 99mg, 4 tablets = 1 banana?
     

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