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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Cortisol and corticoids - a question

Discussion in 'General Treatment' started by JaimeS, May 7, 2015.

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Did you ever take therapeutic corticoids / cortisol?

  1. No; never.

    13 vote(s)
    32.5%
  2. I did, and it made me feel far less fatigued.

    8 vote(s)
    20.0%
  3. I did, and it has helped somewhat.

    6 vote(s)
    15.0%
  4. I did, but it didn't do much of anything.

    2 vote(s)
    5.0%
  5. I did, but I had a worsening of symptoms with cortisol.

    11 vote(s)
    27.5%
  1. JaimeS

    JaimeS Senior Member

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    I had such an atypical response to cortisol that I'm wondering if anyone else has experienced the same thing.

    When I took oral hydrocortisone (10mg), I felt a rushing sensation that yanked downwards, like I was a bathtub and my stopper had just been pulled.

    Put less colorfully, I felt a very fast-approaching episode of more severe POTS than I'd ever had before. This was followed by two days of barely being able to stay upright or complete sentences or move, much - like PEM. For those of you who don't know my activity level, I can usually totter around just fine, so not being able to stand upright for more than a few seconds at a time was terrifying.

    After reading Dr Lam's site, I came across a quote regarding a 'paradoxical' reaction to cortisol, and I wondered if anyone besides me had actually experienced this.... or had any theories as to why this should occur.

    -J
     
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  2. Sushi

    Sushi Senior Member Albuquerque

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    I answered though my bad reaction was very different from yours. I had done a 4 times a day saliva test for cortisol and it was unbelievablely low. So, you'd think I'd feel better if I tried replacing it, just a bit? I got hyperstimulated with high BP and then crashed feeling absolutely ghastly. My doc thought I had probably been low for a long time and had become hypersensitized to it. Who knows?

    Sushi
     
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  3. JaimeS

    JaimeS Senior Member

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    @Sushi - that's like my serotonin. It's naturally quite low (which is apparently just how my body likes it)! If I do anything - and I mean anything - that affects serotonin, I get hyperstimulated and then crash. It's above and beyond the wired-but-tired thing... I get seizures in my larger muscles and twice lost the feeling on one side of my face.

    The neurotransmitters... they are fierce.

    My cortisol is low-normal, but I don't increase production during times of stress, as my ITT test informed me. Thanks very much for clarifying the difference between my reaction and yours. :)

    -J

    [Edit: Also, I had a saliva test and my cortisol was super-low as well. However, no blood test has ever been able to replicate that 'super-low' value. I'd heard that saliva tests were unreliable, but thought they'd been improved. Evidence doesn't seem to support what I'd 'heard', however. ;)]
     
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  4. Ema

    Ema Senior Member

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    Dr Lam also thinks it is possible to become addicted to cortisol which puts everything else he writes into question for me.

    I think most paradoxical reactions are as @Sushi describes when the HPA axis becomes hypersensitive to minute amounts of cortisol after being low for prolonged periods or as a result of the negative feedback loop and suppressing more cortisol than you are replacing.

    Dosing HC can be super tricky but I'm glad I stuck with it. And am still hopeful that I will be able to wean off again someday.
     
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  5. JaimeS

    JaimeS Senior Member

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    'Addicted' as in 'dependent'? Or addicted as in jonesing for, ready to do whatever it takes to get your fix? If the former, I don't see what's wrong with that idea. Certainly the body downregulates the production of other chemicals if they're supplemented from the outside. Why should cortisol be any different?

    (I feel like I must be missing something, or misinterpreting you, @Ema.) :)

    There is no way I could take cortisol. My doc - although I now view her as highly untrustworthy - said she was starting me off on the smallest dose she had. It put me flat on my back for days, as previously stated... NOT gonna try it again.

    Which she immediately suggested.

    -J
     
  6. Ema

    Ema Senior Member

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    Exactly.

    Addiction and dependence are two different concepts.

    No one is addicted to cortisol any more than one could get addicted to estrogen and as a doctor, he should understand that distinction. Instead he goes on about withdrawals like cortisol is some Class A drug.
     
  7. JaimeS

    JaimeS Senior Member

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    Well... regardless. I did have a paradoxical reaction to cortisol. And more than once; it's not a fluke. I should add that this was not following a liberating rush of energy. It was the opposite, and it was practically instantaneous.

    Even a broken clock is right twice a day. ;)

    -J
     
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  8. Ema

    Ema Senior Member

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    If you've been low in cortisol for a long time, you're going to be running on adrenaline as a subpar replacement. This is a vastly more stimulating state than an appropriate cortisol level.

    Many people find that instead of perking them up like an amphetamine, replacing cortisol actually allows them to wind down and then perk up as our circadian rhythms intended. That's a more natural, physiological state than a constant state of arousal due to adrenaline.
     
  9. adreno

    adreno PR activist

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    I had a somewhat similar reaction to cortisol. My own little theory is that since cortisol targets not only glucocorticoid receptors, but also mineralcorticoid receptors, too much cortisol with too little concomitant aldosterone can lead to an OI crash.
     
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  10. justy

    justy Donate Advocate Demonstrate

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    I have never taken HC but have taken prednisolone a corticoid for asthma/lung exacerbations and had a really werid response. Firstly I became almost psychotic (steroid psychosis is common) that was at a dose of about 30mg a day. My GP dropped the dose as I was having severe trouble breathing, but also felt like I was disconnected from reality quite seriously so had to take it.

    At 20mg a day I spoke to the pharmacist about side effects who said I would feel lots of energy and hungry and not to worry I would proabbaly feel the best I had in my life and get lots of stuff done.

    Instead I was exhausted and could barely stay awake - I was even taking it at night because the breathing worsened then and it still didn't keep me awake. I also developed a severe aversion to food and couldn't eat - even watching other people eat made me feel disgusted - I just couldn't understand how you could put stuff in your mouth and eat it - it was an awful experience and I lost quite a bit of weight over the few weeks I took it. My GP claimed never to have seen a reaction like this before.

    Once tapering and down to about 5-10mg a day is started to quite like it and didn't want to come off. Last year I had another asthma issue and started again on only 5 mg I became extremely agitated and suicidal and was advised not ever to take it again - a real problem for someone with lung problems!

    BTW I also have severe issues with SSRI's - had relentless akasthesia and anxiety for two and a half years following just two doses of one.
     
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  11. justy

    justy Donate Advocate Demonstrate

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    I forgot to add my saliva cortisol test was normal on waking, but then dips very low by midday, then slightly perks up a little in the afternoon, but npot into normal ranges and then drops way below normal at bedtime. My DHEA was VERY low, but I don't tolerate supplementing it - made me feel very weepy and aggressive at tiny crumb doses.
     
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  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Have a google of thyroid storm. Hc can increase the effects of t3 that has built up. Something along those lines.

    Others here might be able to explain it better like @Ema ??
     
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  13. JaimeS

    JaimeS Senior Member

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    @Ema, absolutely. Again, my cortisol isn't low on a day-to-day basis... I just don't make more in response to stressors. So when something bothers me - even a little - for more than an hour or so - I get the jitters. It's infuriating, because my emotional upset:body response ratio is really skewed. It's a good thing I don't have a 'nervous temperament' or I think I would be adrenaline-infused 24/7.

    But still, we're not looking at a 'little' understimulation. Cortisol cut me off at the knees. I think we're in "it's good it's helped you - it's not going to help me" territory here.

    @adreno - I had the same thought, myself.

    @justy - that sounds like a nightmare! I take Vitex for breathing issues. It's in my blog post about what I take. Again, what works for me may not necessarily work for you; but there it is.

    I hope more people reply! The number of us who've had issues with cortisol is approaching significance, but I still think I probably need to see more responses before drawing conclusions. For Science!

    ;)

    -J
     
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  14. Tammy

    Tammy Senior Member

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    First time I took it I got dizzy............I told my naturopath at the time and he just said keep taking it. Took it a second time and got dizzy again............so that was that........never tried it again.
     
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  15. minkeygirl

    minkeygirl But I Look So Good.

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    @JaimeS can you briefly explain your breathing issues? ( I can't manage reading a blog)

    How does Vitex help? It's for hormone balance from what I read

    Please tag me so I get an alert.
     
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  16. JaimeS

    JaimeS Senior Member

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    @Tammy - did you vote? If you don't want to, that's okay. :)

    -J
     
  17. JaimeS

    JaimeS Senior Member

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    @minkeygirl -

    To characterize one: I keep feeling as though my oxygen is low, as though there isn't enough oxygen in the air. "Air hunger" feels accurate. I take bigger and deeper breaths (not faster - it's not hyperventilation in that sense). However, the sensation that I'm not actually processing oxygen only grows stronger. During my worst episode, I began to lose feeling in my arms and legs and could not sit up.

    * I had an episode while hooked up to an oxygen monitor, once. My oxygen levels dropped to 78%. It was a mild episode.
    * It's worse premenstrually and menstrually.
    * It's worse on hot days.
    * It's worse on wet days, and right before a storm.
    * It's worse in places with poor air quality (for some reason, home improvement stores with their enormously tall ceilings are absolute death traps for me. I feel ridiculous even writing that down, but when the symptoms come on that fast, and six times in a row in the same location, ignoring it is just plain foolish.)

    Many of these (hot days, wet days, before storms) are documented to increase any breathing difficulty.

    So, Vitex. It IS for hormone balance. I started noticing that my worst breathing difficulties were almost always menstrually and premenstrually. I started looking at which hormones dropped the week before menses and seeing if I could correlate any of them to respiratory distress.

    Lo and behold, low progesterone is often involved in breathing difficulties.

    Vitex increases LH, which then has a progesterogenic effect. Stopped one of my breathing episodes in its tracks. Today is the first time I've had a breathing episode since I started taking Vitex regularly (last December). (Conditions are, unfortunately, perfect for one right now.)

    I take the powder in caps, 1200mg per day now that it's summer. Dose is about 1-g, but it's a flexible herb and very forgiving. I seriously have trouble with tons of stuff, but Vitex didn't cause a blip. It also seems to help my digestion, actually.

    In emergency situations, I'd take more - just brew the powder as a hot tea, or with coffee (makes it more palatable). Drink up until the symptom goes away. Then wait 20 minutes and have another sip or two. Repeat a few more times until you're sure it's gone.

    I also found out that drinking something basic can help curtail them. I found that out just today! This implies that what I'm experiencing has to do with acidosis. Not good news.

    Hope that's not too long!

    -J
     
    Last edited: May 8, 2015
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  18. minkeygirl

    minkeygirl But I Look So Good.

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    I have that same feeling. Like I'm not using enough of my lungs and not getting oxygen.m. I don't struggle to breath, just feel I need more.

    I had relief using roxithromycin. I stopped it for a few days and can't get back to where I was. But this is why I think mine is infection. I really noticed a difference when I felt like I was getting more oxygen

    I'm Years post menopausal. I have almost no progesterone and slightly more estrogen. Not sure how that would affect me. Don't think it's what I want. If mine is hormone related.

    I can barely read right now so I'll go back and read this again another time.

    Thanks for the info.
     
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  19. JaimeS

    JaimeS Senior Member

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    Sure, @minkeygirl. I wouldn't say my issue is caused by hormones necessarily. Progesterone makes more oxygen available, is anti-inflammatory especially to the spine and nerves, and is in general an awesome thing for people with ME's symptom-picture (in low doses). Did a bunch of research before taking, as I react to serotinergic and (obviously) corticotrophic stuff very dramatically.

    Vitex is gentle-gentle, though, and I tolerate it just fine. If you're concerned, I would do low-and-slow (try 200mg, or even a pinch of pdr on the tongue) and just see how you feel.

    If you have almost no progesterone, it could be a good thing. And that is all I shall say on the matter. :)

    -J
     
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  20. Ema

    Ema Senior Member

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    Vitex does increase progesterone by stimulating the formation of the corpus luteum but this actually inhibits the release of FSH from the pituitary. Vitex can increase or normalize the production of LH.
     
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