The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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CFS - A Moving Target - Unable to be Hit

Discussion in 'General ME/CFS Discussion' started by gregh286, Oct 5, 2016.

  1. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    Hi All,
    Its no wonder they can not find a diagnostic marker for this fiasco of an illness...its so diverse in manifestations and it seems to circumnavigate any "direct" treatments you apply for improvement by decreasing other key bodily functions.
    This year I had massive improvements using No2 black, then I starting going down quickly.

    I discovered AAKG lowers cortisol quite considerably, so stop NO2 black and started small dose Pred (5mg)

    5mg Prednisone worked a treat, full energy again,,,,until.....voila......my old friend low aldosterone returns (very dry mouth, urinate quickly after drinking, unable to retain fluids...high fatigue.) Obviously the prednisone suppressing adrenal function aspects including aldosterone.

    So, the search for a cure all is still delayed......

    I will start only pregnenolone now,,,,,surely this mother of steroid hormones will ensure an equal delivery of raw material to avoid hormonal unbalance.

    Keep the faith!
    greg
     
    Last edited: Oct 5, 2016
    Jennifer J, ErdemX, TiredSam and 3 others like this.
  2. Mary

    Mary Senior Member

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    @gregh286 - I found the same thing with arginine - after 3 days I was completely wiped out and then discovered it lowered cortisol. I remember your posts about No 2 Black, that's what got me trying arginine.

    I've been taking pregnenolone for many years, I guess it's been helping.

    One other thing - you might try licorice. It helps regulate cortisol metabolism and for me a small dose is very effective for raising my cortisol when it goes too low (I go by symptoms). e.g., I respond to half a capsule, and I think after the arginine I took a whole capsule which was a lot for me. It can raise blood pressure but sometimes that's a good thing. I would go slow with it if you try it.
     
    ErdemX likes this.
  3. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    thanks @Mary ....what does low cortisol feel like when you have it.......
    Licorice is a good one but i tended to avoid it as my BP is 130/80-140/85, so I am on the high side if anything....

    I found eating a high carb meal pre bed means I awake much better than without food before bed. I think the higher blood sugar during sleep is keeping cortisol release restricted......as we all know it rises when blood sugar falls. I think this "rest" from cortisol production allows my adrenals to produce other essential hormones, so you dont get cortisol "steal"
    Same thing happens if I wake at 4am........tired that day but not CFS'd fatigued....again I guess adrenals got a short vacation that day....as much of our cortisol released 4-7am...

    I guess rest and "adrenal" rest are far from the same thing.....
     
  4. Mary

    Mary Senior Member

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    For me, low cortisol equals more fatigue first thing in the morning. It's generally not a problem for me (and maybe the pregnenolone I've been taking for so long has helped with this!), but e.g., the arginine really wiped me out, and once in awhile something else will have a similar effect, and I've learned that it generally responds to licorice. I also take an adrenal glandular and found with the arginine (and other things though nothing comes to mind right now), I need more of the glandular.

    Interesting about the high carb meal before bed! I've just discovered the same thing myself the last several days, for sleep. I've had middle of the night insomnia for years, and have been eating very low carb for years (no carbs with dinner) and just found out a couple of days ago that eating potatoes with dinner helps me a lot with the middle of the night insomnia. I'm finally realizing that the insomnia is related to blood sugar and cortisol production - I never realized that before. Now I'm wondering after reading your post that maybe the potatoes will help my adrenals overall - very interesting idea!
     
  5. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    low carb diet will wreck havoc with adrenals. It promotes cortisol release. I never understood why paleo diets are suggested....fair enough they maybe anti inflammatory..but makes adrenals work hard.If you visit TCM (trad.chinese medicine) with weak adrenals they put you on 80% high carb diet so adrenals can rest from cortisol production.

    Insomnia most likely caused by cortisol spikes as your blood sugar drops during night.....thereby wakening you up at silly o'clock. Large bowl rice...potatoes etc pre bed will eliminate that.

    i dont think that morning fatigue is the result of low AM cortisol. its the result of your adrenals pumping out cortisol during night as your blood sugar drops. you will soon see after eating potatoes before bed. this should leave you fresher in the morning as your cortisol production was kept low during sleep cycle.....so your adrenals did not have to work hard.
     
    Last edited: Oct 5, 2016
  6. gregh286

    gregh286 Senior Member

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    also i found the hard way eating sugar not have same effect as glucose increase by metabolism of food. ie. bottle of fanta not same as bowl of rice...even though end result similar...i.e.a rise in blood sugar.
     
  7. Mary

    Mary Senior Member

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    Hi Greg - I agree with most of what you say - I wish I had known this years ago! But I do think for me the morning fatigue is due to low cortisol - first, I usually don't have morning fatigue in particular (unless I'm crashed, which is different from adrenal fatigue). But after taking arginine for 3 days, I was wiped out in the morning, well wiped out all day - and then I found out it lowers cortisol. So even though I've had middle of the night insomnia for years, if I managed to get back to sleep, I would feel okay in the morning (relatively speaking of course!)

    Having said all that, it sounds like eating carbs is good for the adrenals for all the reasons you state - again, I wish I had know this before!

    I've avoided sugar for years - no question, it's not the same as eating a bowl of rice!
     
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  8. mermaid

    mermaid Senior Member

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    I too, after several years of eating low carbs, then read that it wasn't good for people with underactive thyroid as I have. I also had taken a cortisol test a couple of times and it showed low cortisol most of the day. I also read that getting migraine aura as I was getting first thing could be due to low blood sugar issues. Also changing onto T3 only means that my adrenals are under more of a hammering anyway than on T4.

    So now, I too have added in more carbs, though I try to eat healthy carbs most of the time - I have Teff grains made into a porridge for breakfast with plenty of fruit and nuts, and then potato with salad for lunch with some protein, and a warm cooked meal in early evening again with potato or rice. I also eat something around 9ish, usually some more Teff grains with nuts and yogurt or kefir, and some pumpkins seeds. That keeps me going until morning.

    I was on a little Pregnenolone for a while too, but generally don't go on it now unless I get very low in energy (often around February time). It does tend to give me lots of dark facial hair as a side effect! Ha ha! Not such a nice look on me (female).

    I go to a medical herbalist who gives me a useful mix which includes Liquorice and some other things to help generally and with specific issues.
     
  9. valentinelynx

    valentinelynx Senior Member

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    You might try replacement with hydrocortisone (same as cortisol) in physiologic doses (15-20 mg/day perhaps). The problem with prednisone is it does not replace your mineralocorticoid need, thus leaving you with your low aldosterone. So, you might not be dealing with suppression (unlikely at 5 mg/day prednisone) but rather just lack of replacement mineralocorticoid.

    Hmm. Everyone is different. I do much better on low carb. If I eat carbs before bed - which I crave when on a high carb diet, then I just stay hungry all night. Plus my GI tract is unhappy and I gain massive poundage.
     
  10. gregh286

    gregh286 Senior Member

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    thanks but pred and HC have same mechanics of action i thought. taking one is same as the other dose adjusted. like 5mg pred for 20mg HC.
    true we are all different i do x10 better on high carb. just have to listen to our bodies eh.

    cfs is always a dabble in the dark.
     
  11. valentinelynx

    valentinelynx Senior Member

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    FYI, the chart on this page illustrates the differences in actions among the steroids. (I tried posting the chart, but the formatting was lost).

    Specifically the "anti-inflammatory" to "mineralocorticoid" potency of hydrocortisone is 1:1, while the same ratio of for prednisone is 4:0.6.

    So, no they are not equivalent. You lose the mineralocorticoid effect with just prednisone. If you have adrenal failure, you need both corticosteroid and mineralocorticoid activity replaced.
     
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