Cortisol brought me back to life.

[Wayne]

If cortisol doesn’t, or can’t, apparently treat the problem of chronically low endogenous cortisol, what will?

Yes, from my understanding of the literature and testimonials is that low-dose cortisol replacement for ME is just a temporary bandaid that works for a while but then eventually stops working, causes a number of long-term side effects, and turns into this monster your have to wean off of.

@gm286 -- Supplementing with low-dose cortisol (Cortef) has been a godsend for me. I've been taking it (~20 mg/day) for probably 20 years now. The benefits have been steady, and there have been no side effects (as far as I know).

The body normally makes about 40 mg. of cortisol per day, so as long as a person supplements with less than that on a daily basis, the adrenal glands won't shut down their own production to zero. So many of the side effects from cortisol supplementation of 40 mg. or more can for the most part be avoided.

That said, even low-dose supplementation can be a problem for some people. Fortunately, it wasn't for me. It took me from about 4% functionality to around 25%, which is about where I've been at the the past many years. I have little to no concern about my continued use of low-dose cortisol supplementation.

 

[gm286]

@Wayne I will be weaning off cortisol (prednisone) soon and will be put on HC at the same dose (so your 20mg HC).

By early next year, I will normally be stopping HC as well. Two doctors have already insisted (i.e., they probably wouldn’t prescribe a refill of HC if I asked).

I’ve basically been on low dose prednisone for at least half of the second part of 2020, and pulses of prednisone before that.

If I see that my functionality is worse after I have entirely quit cortisol, I suppose I will know that it has been helping me, even at 5mg prednisone a day.

Will document this / mention it on PR.

 

[Wayne]

Two doctors have already insisted (i.e., they probably wouldn’t prescribe a refill of HC if I asked).

@gm286 -- Most doctors know little to nothing about low-dose hydrocortisone therapy. You may want check out the most authoritative book on the subject entitled:

• Safe Uses of Cortisol by William McK. Jefferies

After reading this book, I highlighted certain sections, and showed them to a couple of different doctors. One who saw the logic decided to give me a prescription for low-dose Cortef, even though it was not a well known therapy at the time. But if you make a good presentation to a doctor, your chances of getting what you need improves.

Jefferies' bottom line on whether or not a person needs supplemental cortisol: If you try it, and you feel better, then you likely need it. If you try it and you don't feel better, then you probably don't need it. It's really pretty fundamental in his mind. He was not a big believer in cortisol level tests, which he felt were too unreliable.

Interestingly, Jefferies himself started noticing symptoms of low cortisol as he approached retirement. Once he started taking low-dose hydrocortisone following his own outline, his health improved, and was apparently doing quite well going into his 80's.

 

[thingsvarious]

If someone's "CFS" is due to low hormone levels then they were misdiagnosed with CFS and actually are suffering from their actual hormonal deficiency.
Not uncommon but that means they have a treatable condition and suffered for god knows how long with the wrong diagnosis.
As a medical student i assume you are familiar with the possibility of misdiagnosis.

Having two or more comorbid conditions is not uncommon, myself being an example, but if you have low hormone level that is not CFS. Taking the hormones i am deficient in has helped resolve those deficiencies but has not fixed the CFS.

I am saying a subsection of patients that think they have CFS actually have unrecognized hormone deficiencies that are treatable.

 

[Alvin2]

I am saying a subsection of patients that think they have CFS actually have unrecognized hormone deficiencies that are treatable.

This is correct. In fact everyone should be tested for hormone deficiencies. If they were misdiagnosed they will be cured, if they have comorbid hormone deficiencies in most cases its treatable.

 

[Jjnz]

Super interesting.
I have normal cortisol clinically and normal ACTH but something is up, I have severe osteoporosis and I'm not losing calcitonin. So I assumed too much stress = too much cortisol = blunted responses.
One of the things my doctor tried me on since I wasn't making any common inflammatory markers was 20mg cortisol.
I wondered about pulse dosing it once a week because there's one study that showed it actually increase bone density, with a condition that has osteoporosis as a cmorbidity
It was extremely potent.
I felt fantastic
Here's the summary I wrote at the time

This is a trial I did on prednisone about a year ago.
It caused me to think I may not have ME and its some sort of inflammation condition.
I was amazing until I exercised for 2 days in a row, or was it the timing, Ill let you judge.

I still take prednisone when I really really struggle, usually just for 1 or 2 days, Im very wary of it.
Its cruel, I swear I could live on this stuff


Summary:
Significantly better cognition, better mood, better physical strength, better physical recovery, better Heart Rate Variability, better exercise tolerance.


Prior to this
I had a sore/red throat for nearly 2 weeks ( especially at night) and what I now think is brain stem inflammation which takes me horrible places and causes minor but concerning balance issues

Day 1 40mg ( too intense by end of day)
Day 2 0 mg
Day 3 20mg
Day 4 20mg
Day 5 20mg (post exercise inflammation continues for 2 days)
Day 6 20mg
Day 7 20mg


Day 2
Improvements are everywhere

Cognitive capability+++
Better word finding ability, by about double
Typing is faster / more accurate
Mental stamina and ability to keep focussed has increased.
Image processing : Vision=> cognition
eg driving ( can instantly recognise hazzards), easy to find place when looking back and forth between screen/keyboard
Cognition is much quicker, I can answer questions much more rapidly
Much better/faster memory recall of names
Thinking takes a lot less effort and intention

Neurological
Muscle twitching : 1 short episode in sauna, normally fairly constant
Tremor that occurs when moving muscles is still there but not as significant
Balance when walking around in the dark at night is much enhanced
Treadmill at gym ( no balance issues when dismounting)
1 leg balance test 47 secs (LHS) !! ( normally 3-5)
Tinitus (subjective, but seems quieter after exercise where it's usually greater)

Light exercise ( pegging out washing or turning compost) used to be a moderate effort met with high HR ( 100-125) light headedness, fatigue, ectopic beats and easy sweating
All of these symptoms have gone, completely hr 80 after washing line

POSTURAL CHANGES
Standing up from a seated/Lying position often causes temporary lightheadedness
Bending over forwards always caused ectopics and a strong sensation of fluid pulled by gravity around chest/head, now it has gone, completely

Legs
Purple knees: now white and don't change colour when Knees are pressed (no fluid?)
Muscles feel great, predictably they hurt when exercising, but they are not full of fluid,

Wrists
Still sore when bones pressed but 100% freedom of movement
Tendons seem visibly smaller ? certainly not painful at all

Area under ribs/torso
Virtually no pain at all now in torso that was around the ends of the ribs and tissues around back of hips.
can lean back on a chair without the area being sensitive
Sleep: No pain in chest when lying on side

Skin
Blotches on face have cleared (as they do sometimes)
No redness in nose/cheeks

Head
Prickly sensation in back of neck/skull : gone
"Much" more resilience to mental stress

Heart:
I can no longer feel every single beat of my heart through my chest
I seem to have no ectopics
there is no pressure in the middle of my chest when breathing in
Heart rate variability metrics are excellent, best ever sdnn and pnn50

Glands under Jaw
No sensitivity at all,
reduction

SALIVA/MUCOSA
More saliva in mouth especially when exercising /breathing(WHM)
saliva is self generating in times of depletion

Relaxation
HRV is 62 ( normally around 20-25)
Whislt mind is more active and usable , I am much more relaxed
Easy to relax when I breath deeply now.
Whilst breathing and meditation has had a minor effect on HRV, now it's really dramatic. The peaks and troughs on my hrv meter were never possible like this before

Sleep
Shorter ( 5 hrs vs 9-10) but rock solid sleep,
greater deep sleep ( oura ring)
feel refreshed

Exercise
Incredible stamina- Just dont get tired, everything recovers
I can get hot but it doesnt seem to kill me, my functioning does not suffer like it used to.
My chest is free open and light, exercise used to aggrivate it and pressurise it
HR is significantly lower for same exertion
recovery rate is fantastic,
2 min cardio recovery normally 170-125, was 160-96

Sauna
- Heat stress much more tolerable
- Body gets hot but I don't feel it internally
- Doesn't compound my thinking
- Heat does not stress me like it has previously

Urine
Still foamy at times but much less dark,

Bowel/Stomach
Some changes

What hasn't Changed
- Joint soreness in RH ankle in mornings (OA?)
- Bone pain when pressed hard
- Feet still tingle after exercise
- elbow sore after sleep
- some sjogrens type dryness in eyes/nose upon wakening
- minor tendon/ligament pain occasionally


Overall
everything is much much easier, I feel 15 years younger, Nothing hurts, I don't need to budget my energy , I feel fitter, I dont get dizzy, I have massive endurance and resilience, I am much much more capable, I dont feel that horrible fluid that permeates every cell of my being and makes me want to lie down and die.

DAY 5 20mg ( noted change after exercise)
After gym ( 15 min run and 20 min sauna)
Fine, until 9.30 pm
mild heat felt around the ends of ribs
tingling in both knees and feet ( possibly treadmill related)

Day 6 20mg
Woke with sjogrens type dryness
dry bloodshot eyes, lower/slower cognition
hot knees and ankles, back of ribs/kidney area
less memory speed
later in day dull pain on LHS of chest, got worse till 7-8 pm
mood

Day 7 ( NO prednisone)
Woke 4am, hot feet ( tops of metatarsals and tendons) ( better when elevated)
dry eyes, nose
Fluid in bottom of right foot under metatarsals

 

[thingsvarious]

Super interesting.
I have normal cortisol clinically and normal ACTH but something is up, I have severe osteoporosis and I'm not losing calcitonin. So I assumed too much stress = too much cortisol = blunted responses.
One of the things my doctor tried me on since I wasn't making any common inflammatory markers was 20mg cortisol.
I wondered about pulse dosing it once a week because there's one study that showed it actually increase bone density, with a condition that has osteoporosis as a cmorbidity
It was extremely potent.
I felt fantastic
Here's the summary I wrote at the time

This is a trial I did on prednisone about a year ago.
It caused me to think I may not have ME and its some sort of inflammation condition.
I was amazing until I exercised for 2 days in a row, or was it the timing, Ill let you judge.

I still take prednisone when I really really struggle, usually just for 1 or 2 days, Im very wary of it.
Its cruel, I swear I could live on this stuff


Summary:
Significantly better cognition, better mood, better physical strength, better physical recovery, better Heart Rate Variability, better exercise tolerance.


Prior to this
I had a sore/red throat for nearly 2 weeks ( especially at night) and what I now think is brain stem inflammation which takes me horrible places and causes minor but concerning balance issues

Day 1 40mg ( too intense by end of day)
Day 2 0 mg
Day 3 20mg
Day 4 20mg
Day 5 20mg (post exercise inflammation continues for 2 days)
Day 6 20mg
Day 7 20mg


Day 2
Improvements are everywhere

Cognitive capability+++
Better word finding ability, by about double
Typing is faster / more accurate
Mental stamina and ability to keep focussed has increased.
Image processing : Vision=> cognition
eg driving ( can instantly recognise hazzards), easy to find place when looking back and forth between screen/keyboard
Cognition is much quicker, I can answer questions much more rapidly
Much better/faster memory recall of names
Thinking takes a lot less effort and intention

Neurological
Muscle twitching : 1 short episode in sauna, normally fairly constant
Tremor that occurs when moving muscles is still there but not as significant
Balance when walking around in the dark at night is much enhanced
Treadmill at gym ( no balance issues when dismounting)
1 leg balance test 47 secs (LHS) !! ( normally 3-5)
Tinitus (subjective, but seems quieter after exercise where it's usually greater)

Light exercise ( pegging out washing or turning compost) used to be a moderate effort met with high HR ( 100-125) light headedness, fatigue, ectopic beats and easy sweating
All of these symptoms have gone, completely hr 80 after washing line

POSTURAL CHANGES
Standing up from a seated/Lying position often causes temporary lightheadedness
Bending over forwards always caused ectopics and a strong sensation of fluid pulled by gravity around chest/head, now it has gone, completely

Legs
Purple knees: now white and don't change colour when Knees are pressed (no fluid?)
Muscles feel great, predictably they hurt when exercising, but they are not full of fluid,

Wrists
Still sore when bones pressed but 100% freedom of movement
Tendons seem visibly smaller ? certainly not painful at all

Area under ribs/torso
Virtually no pain at all now in torso that was around the ends of the ribs and tissues around back of hips.
can lean back on a chair without the area being sensitive
Sleep: No pain in chest when lying on side

Skin
Blotches on face have cleared (as they do sometimes)
No redness in nose/cheeks

Head
Prickly sensation in back of neck/skull : gone
"Much" more resilience to mental stress

Heart:
I can no longer feel every single beat of my heart through my chest
I seem to have no ectopics
there is no pressure in the middle of my chest when breathing in
Heart rate variability metrics are excellent, best ever sdnn and pnn50

Glands under Jaw
No sensitivity at all,
reduction

SALIVA/MUCOSA
More saliva in mouth especially when exercising /breathing(WHM)
saliva is self generating in times of depletion

Relaxation
HRV is 62 ( normally around 20-25)
Whislt mind is more active and usable , I am much more relaxed
Easy to relax when I breath deeply now.
Whilst breathing and meditation has had a minor effect on HRV, now it's really dramatic. The peaks and troughs on my hrv meter were never possible like this before

Sleep
Shorter ( 5 hrs vs 9-10) but rock solid sleep,
greater deep sleep ( oura ring)
feel refreshed

Exercise
Incredible stamina- Just dont get tired, everything recovers
I can get hot but it doesnt seem to kill me, my functioning does not suffer like it used to.
My chest is free open and light, exercise used to aggrivate it and pressurise it
HR is significantly lower for same exertion
recovery rate is fantastic,
2 min cardio recovery normally 170-125, was 160-96

Sauna
- Heat stress much more tolerable
- Body gets hot but I don't feel it internally
- Doesn't compound my thinking
- Heat does not stress me like it has previously

Urine
Still foamy at times but much less dark,

Bowel/Stomach
Some changes

What hasn't Changed
- Joint soreness in RH ankle in mornings (OA?)
- Bone pain when pressed hard
- Feet still tingle after exercise
- elbow sore after sleep
- some sjogrens type dryness in eyes/nose upon wakening
- minor tendon/ligament pain occasionally


Overall
everything is much much easier, I feel 15 years younger, Nothing hurts, I don't need to budget my energy , I feel fitter, I dont get dizzy, I have massive endurance and resilience, I am much much more capable, I dont feel that horrible fluid that permeates every cell of my being and makes me want to lie down and die.

DAY 5 20mg ( noted change after exercise)
After gym ( 15 min run and 20 min sauna)
Fine, until 9.30 pm
mild heat felt around the ends of ribs
tingling in both knees and feet ( possibly treadmill related)

Day 6 20mg
Woke with sjogrens type dryness
dry bloodshot eyes, lower/slower cognition
hot knees and ankles, back of ribs/kidney area
less memory speed
later in day dull pain on LHS of chest, got worse till 7-8 pm
mood

Day 7 ( NO prednisone)
Woke 4am, hot feet ( tops of metatarsals and tendons) ( better when elevated)
dry eyes, nose
Fluid in bottom of right foot under metatarsals

Thank you for sharint!
This is was also my experience although with much lower dosages of glucocorticoids.
Did you experience any crash from the prednisone?

 

[Jjnz]

Thank you for sharint!
This is was also my experience although with much lower dosages of glucocorticoids.
Did you experience any crash from the prednisone?

I've only ever done short doses of prednisone, I did this again a few months later and I tapered the dose off down to 3mg. I can't say the benefit occurred even at 10mg but for a few months afterwards there was less inflammation and the whites of my eyes were actually white. (clue there I think). My doctor did say that post prednisone there is often a longer term supression in some people. I think crashes occur when you go perhaps 7+ days and stop suddenly, without tapering, as the body down regulates its natural production of cortisol. Cox2 inhibitors are not anywhere near as effective as prednisone, fir me anyway

 

[thingsvarious]

I've only ever done short doses of prednisone, I did this again a few months later and I tapered the dose off down to 3mg. I can't say the benefit occurred even at 10mg but for a few months afterwards there was less inflammation and the whites of my eyes were actually white. (clue there I think). My doctor did say that post prednisone there is often a longer term supression in some people. I think crashes occur when you go perhaps 7+ days and stop suddenly, without tapering, as the body down regulates its natural production of cortisol. Cox2 inhibitors are not anywhere near as effective as prednisone, fir me anyway

I´d highly advise against taking prednisone. It is very suppressive. Much more than HC-equivalent doses

 

[lenora]

In both January and then again in April I was on weeks of prednisone due to Autoimmune Encephalitis and seizures that lead to being unconscious two days each time.

You're quite right, I felt heavenly on the first round of prednisone and I almost floated along the corridors of the hospital as I raced along with the MT woman trying to catch up.

I was tapered off over two weeks, I should also mention that I started gaining weight during this period.

So, an instant reply in April, except that I also had a mild heart attack. (Only found that out last week). This time, as before, I was so exhausted that I thought I'd never walk alone. I kept falling and the last fall, probably #11, resulted in my back hitting the piano bench and a lot of pain associated with it. So I did get a script for PT (myofascial therapy only) and headed back....a good thing as the exercises were extremely painful at first, but I was ready for that and worked through it. Unfortunaely my knees are still swollen and sore, but everything else feels better. Still without energy, though, but an interesting thing did happen...my swollen glands like nuts under my chin disappeared

 

[lenora]

Hi Again....I didn't have a chance to proofread the above...apologies! Indeed my swollen glands which were also swollen under my arms and had been that way for 35 yrs., did disappear, until I had a carotid stent inserted just last Monday. Unfortunately, they back although not under my arms.

My sleep has been seriously impaired by either the Encephalitis or the steroids...I don't know which. I did fall 11 times and ended up seriously hurting myself on the last one. The extreme weakness from stopping the cortisone. I should also mention that I had hallucinations during the second round...and all in all, it was a terrible experience. Medicine changes didn't help, and I guess a lot of things didn't. Over and done.

Still I hope the sleep improves. I've been getting 2 hrs./night if I'm super lucky and this has been going on since April. A long time, but I'll tell you that my average is about 4 hrs./night. Also, just fyi you can't have the new vaccines if you've had Autoimmune Encephalitis. It will bring on another attack and a different part of the brain may be affected.

I'm glad that you're doing well, Wayne, and I think all of us can have different responses to the exact remedy. Oh, out of interest, I've gone from an x-small, small to a large in clothing. This is directly due to the steroids and I'm not happy about it. Any ideas? My rather small diet is the same as before. Stay well....Yours, Lenora

 

[thingsvarious]

I think all of us can have different responses to the exact remedy

Sooooo true

 

[lenora]

Hi Everyone....I still need your very knowledgeable input about losing weight after steroids (if you ever do!). It is mainly around my waist, which is now a middle and my stomach which is horrid. It's embarassing and it seems that every lump and bump shows up. Anyway, I've cut my food intake even more, am loony from so many meds, but I need them b/c of new heart & BP problems and I'm not going to bore you.

So give it a good think and let me know if you've found anything that works in this regard. Instead of going down with new stent, my BP is higher than ever. Systolic was below 80 before a very early menopause. Now it's just the opposite. Somehow I think we're always going to have problems! Stay well. Yours, Lenora.

 

[Guwop2]

I’m not going to pretend I can follow much of these studies (I’m not a science person), but I was under the impression that some of us cannot regulate cortisol production properly and produce too much, which has a damaging effect (an autoimmune issue). 3 years ago I got my ears pierced and within a few hours I noticed a tingling feeling all over my body (especially my head) and a sensation of what I understand (perhaps incorrectly) to be a huge ‘rush’ of cortisol. This continued and I realized I’d triggered something potentially bad, I panicked and in order to try and mitigate this I did a weird thing (that I never do) and went for a run to try and expend or redirect this cortisol elsewhere. It worked for the time I was running and the cortisol (or whatever it was) ceased in the rushing sensation in which it presented itself. However, this was only a short term relief and within a few days I realized I’d damaged myself quite badly and some of the advances in my health had been set back - it took another year to get back to where I was before the ear-piercing. Because of this I also developed a total intolerance to black tea, which I had been fine drinking up until this point and I’ve since read that new intolerances are easily adopted by ppl with ME/CFS. I put that down to tea having been brought into association with the piercing ‘trauma’ and treated as a threat henceforth...basically just wondering whether supplementing cortisol as OP suggests might be potentially bad for me?

 

[lenora]

@Guwop2 ....Hello. I replied to @pattismith earlier about the body and how it so individual to all of us. Yes, your run helped in the short term, but b/c you have ME it caused problems in the long term.

The good thing about what happened (and I don't mean this in a nonsensical way) is that you learned something very important about your body. Going at a slow pace is not a bad thing at all, and you'll be forever wary of treatments that may/may not help you in the long term. That's not a bad thought to develop at all. Sadly, we can only push our bodies so far b/c we receive a huge push-back in return. It's against everything we've ever been taught or learned, but it's an invaluable lesson. Yours, Lenora.

 

[Wayne]

just wondering whether supplementing cortisol as OP suggests might be potentially bad for me?

Hi @Guwop2 -- That's quite a story you tell about your ear piercing experience. I can see how that could easily happen with someone getting a tattoo as well. -- Regarding your possibly supplementing with cortisol, I don't know the answer. But if you did "try" it, I would suggest proceeding extremely cautiously. And then tune into your intuition the best you can every step of the way. I did this over 20 years ago now, and I discovered I needed it, and did well with it. But others have not. So it's a very individual thing. -- Take care!

 

[lenora]

No, @Guwop2, I'd never have a tattoo because even today they don't know how they work in relation to the body. And please follow the advice given by Wayne....listen to your body, and go cautiously. L.

 

[Guwop2]

Hi @Guwop2 -- That's quite a story you tell about your ear piercing experience. I can see how that could easily happen with someone getting a tattoo as well. -- Regarding your possibly supplementing with cortisol, I don't know the answer. But if you did "try" it, I would suggest proceeding extremely cautiously. And then tune into your intuition the best you can every step of the way. I did this over 20 years ago now, and I discovered I needed it, and did well with it. But others have not. So it's a very individual thing. -- Take care!

Since then ive regarded tattoos as a definate no no, simply not worth the risk. Not really the needles, but that the ink contains heavy metals which may trigger an autoimmune response - removing my amalgams helped uniquivocally, so theres no way id put more toxic stuff back into my body.
All the succesful treatments ive come accross do require patience, so yeah if i do try cortisol then id start at a super low dose and slowly up it, and listen to my body. Thanks for the advice, I will certainly take care if i try it! -)

 

[Guwop2]

No, @Guwop2, I'd never have a tattoo because even today they don't know how they work in relation to the body. And please follow the advice given by Wayne....listen to your body, and go cautiously. L.

Yes, solid advice all around. Thank you

 

[AwakeButAsleep]

What do you think is the most common hormone affecting ME/CFS?