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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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I am having the best day...

TiredBill

Senior Member
Messages
335
I am also starting to learn about adrenals, after a test with ZRT labs showing high cortisol, low testosteron. It was the analysis from ZRT labs that recommended Cortisol/DHEAS Saliva Test. There is some info here. http://adrenalfatigue.org/saliva-testing-for-adrenal-hormones

The lab also recommended the book "Adrenal Fatigue: The 21st Century Stress Syndrome",
https://www.amazon.com/Adrenal-Fatigue-Century-Stress-Syndrome/dp/1890572152

For a deeper understanding of adrenal hormone regulation check out articles on HPA axis, I havent had a chance to look into it yet. One interesting thing I have read. though, is that the adrenal hormones might also inhibit the thyroid, by causing "reverse T3" (rT3) to be made instead of T3.

"Wired and tired" is supposed to be a symptom of adrenal issues. Feeling stressed out for nothing, is definitely a big part of my symptoms too. Also have that same challenge of being unable to wind down, somehow, always too tense, almost never really relaxed. I link it to a head injury in my teens (PTSD). Have you had stressors earlier in life that might have caused a sustained output of cortisol, hence keeping your ANS in a more or less constant state of sympatic activation ("fight & flight")? The body needs to be in parasympatic mode ("rest & digest") to recover and rejuvenate, if I understood it correctly. Would not surprised if good sleep is a big part of that...

I played American football for 10 years (and 3 years of rugby). It does cross my mind at times--given the flood of research--that my brain was likely subject to a lot of sub-concussive hits. What role this might play in all this is beyond me.

Avoiding "fight or flight" is an imperative for me beyond a certain hour in the day. Paradoxically (or maybe not) a certain amount of positive stress can help me get through a day. But when it comes at 9 or 10 PM, there is a guarantee of no refreshing sleep and a wipe-out day to follow.

Thank you for the links!

Bill
 

Wayne

Senior Member
Messages
4,308
Location
Ashland, Oregon
I'll also need to look more into DHEA. My hormone levels all seemed poor and my very weak understanding of DHEA is that it plays a role in proper hormone production. I need to learn more.

Hi BIll,

I only have a limited time right now, but did want to mention that I supplement both with Cortef (prescription bio-identical cortisol) and DHEA. I would like to point you in some specific directions on this--but don't have the time right now. The reason I'm making this quick post is because I think it would be very good for you to research pregnenolone as well.

It's the body's "master" hormone, from which many other hormones are derived, including cortisol and DHEA. If the body has enough pregnenolone, then it has a chance to "decide" how much of it to convert to other hormones. If you don't have enough, then you're body is not going to be able to adequately regulate your other hormones. I'll try to post a link to a good article later.
 

TiredBill

Senior Member
Messages
335
Hi BIll,

I only have a limited time right now, but did want to mention that I supplement both with Cortef (prescription bio-identical cortisol) and DHEA. I would like to point you in some specific directions on this--but don't have the time right now. The reason I'm making this quick post is because I think it would be very good for you to research pregnenolone as well.

It's the body's "master" hormone, from which many other hormones are derived, including cortisol and DHEA. If the body has enough pregnenolone, then it has a chance to "decide" how much of it to convert to other hormones. If you don't have enough, then you're body is not going to be able to adequately regulate your other hormones. I'll try to post a link to a good article later.

I appreciate the heads-up. This is an area of near total ignorance for me. It does seem to me that whatever interplay of CFS, sleep disruption and all the other assaults on health have messed with testosterone, thyroid, D3, and B12. I think it stands to reason these things are interlinked--and doctors have agreed when I've asked.

I would be unsurprised if there weren't common links.

When you have the chance I'd appreciate links.

Bill
 

Wayne

Senior Member
Messages
4,308
Location
Ashland, Oregon

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
I am also starting to learn about adrenals, after a test with ZRT labs showing high cortisol, low testosteron. It was the analysis from ZRT labs that recommended Cortisol/DHEAS Saliva Test. There is some info here. http://adrenalfatigue.org/saliva-testing-for-adrenal-hormones

If you're going to purchase a saliva test, you will save money by going through the Canary Club which uses ZRT labs. The Canary Club https://www.canaryclub.org/ is free to join. Here is the cortisol + DHEA profile (Adrenal Stress Profile) people are talking about for $155:
https://www.canaryclub.org/adrenal-stress-cortisol-dhea-hormone-profile.html

It will cost you $170 if you buy it from the ZRT Lab website:
https://store.zrtlab.com/index.php/adrenal-hormones

Here's a sample report:
http://www.zrtlab.com/images/documents/adrenal-stress-sample-report-2015.pdf

I've bought the Adrenal Stress Profile from ZRT Lab twice by going through the Canary Club and have been very happy with the response time. All postage is included both ways.

IMHO tinkering around with your hormones should be supervised by an MD (who might call themselves an integrative or functional medicine doctor) or a naturopath who specializes in hormones. A web search should bring up practitioners in your area.
 
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liverock

Senior Member
Messages
748
Location
UK
I think about this more and more these days.
I think thats wise. Sleep apnea can also be involved in cancer.
I had a conversation with Rich Van Konynenberg a few years ago about the dangers of sleep apnea and how it can increase the size of cancer tumors through increased VEGF
(VEGF increases the blood supply to tumors).

Thank you for sending me this. I think it's really interesting. And I see your point about the VEGF and cancer.
http://www.sleep-journal.com/article/S1389-9457(12)00322-X/fulltext

Another thing that occurs to me is that sleep apnea also raises the blood pressure. I know that because it happened to me when my APAP machine was wearing out, and I didn't realize it. This can cause a stroke. I know that because it happened to a friend of mine, who didn't get diagnosed with sleep apnea, but had it, and his blood pressure was not controlled by the drugs his doctor gave him. And he's pretty old, too.

Rich's point about the dangers of sleep apnea and not being aware, where personally highlighted when I was in hospital last year during a conversation with another patient. He complained that he couldn't understand how he had to have a coronary bypass operation the previous year,after being very careful about diet, weight and exercise etc.

I couldn't sleep one night and heard him have several interruptions in his breathing over an hour. This can cause BP spikes and damage arteries over time. Unfortunately he had checked out before I remembered to tell him to get a sleep test.:bang-head:
 

pattismith

Senior Member
Messages
3,946
Hi BIll,

I only have a limited time right now, but did want to mention that I supplement both with Cortef (prescription bio-identical cortisol) and DHEA. I would like to point you in some specific directions on this--but don't have the time right now. The reason I'm making this quick post is because I think it would be very good for you to research pregnenolone as well.

It's the body's "master" hormone, from which many other hormones are derived, including cortisol and DHEA. If the body has enough pregnenolone, then it has a chance to "decide" how much of it to convert to other hormones. If you don't have enough, then you're body is not going to be able to adequately regulate your other hormones. I'll try to post a link to a good article later.

@TiredBill

yes everything is interlinked, thyroid/mitochondria functions/energy/steroid and sexual hormons

Pregnenolone is synthesized in mitochondria from cholesterol. If mitochondria are inefficient, many functions can be affected, especially energy production and pregnenolone production.
Mine is affected too!
 

perchance dreamer

Senior Member
Messages
1,699
Hi, @TiredBill. It's so great your sleep has improved this much and that you've figured out how to address the central apneas. Thanks for telling us about it.

You asked earlier what's to be done if your cortisol is too high at certain times. Although it's somewhat controversial, I do a 24-hour salivary test each year and have for a long time. For several years my 4:00 a.m. cortisol was sky high.

I do bioidentical hormones under the guidance of my P.A. at an integrative medicine clinic, and I also take Gaia Herbs Sleepthru before bedtime. This seems to have helped me with the inappropriately high cortisol levels in the middle of the night. Other people do well with Cortisol Manager or Seriphos.
 

echobravo

Keep searching, the answer is out there
Messages
137
Location
Norway
For several years my 4:00 a.m. cortisol was sky high.
Did that cause you to wake up at 4 AM? It happens to me a lot, I wake up between 03 and 04 wide awake with a racing pulse. Maybe it is high cortisol?

Did you ever figure out why your body decided to pour out max cortisol at a time that should normally be peaceful & deep sleep?

Cortisol is the major fight & flight hormone, so I am wondering what might the perceived stressor..or threat..that makes the body want to go into full alert?

Since I have circulation issues - OI, POTS, dizzyness - could it be that the blood pressure goes so low during night that it causes an adrenalin burst to increase heart rate and constrict blood vessels?
 

Diwi9

Administrator
Messages
1,780
Location
USA
Even one day feeling "normal" is amazing. It gives me hope. It has been a very long time coming, but I had a day where I felt human again. Incredible!

Bill
The big take-away from this experience is that we can get better, we have that potential. Ron Davis talks about a "switch"... We are not necessarily degenerating, like with some diseases. There is a mechanism that is keeping us in an altered metabolic state, which is probably a normal human state, but not when it is chronic. No wonder it's so difficult to understand this disease.
 

HelloHere

P.o.t.s, brugada,and now high Tsh or ME/CFS?
Messages
12
Location
south east coast US
I am also starting to learn about adrenals, after a test with ZRT labs showing high cortisol, low testosteron. It was the analysis from ZRT labs that recommended Cortisol/DHEAS Saliva Test. There is some info here. http://adrenalfatiguedotorg/saliva-testing-for-adrenal-hormones

The lab also recommended the book "Adrenal Fatigue: The 21st Century Stress Syndrome",
https://www.amazon/Adrenal-Fatigue-Century-Stress-Syndrome/dp/1890572152

For a deeper understanding of adrenal hormone regulation check out articles on HPA axis, I havent had a chance to look into it yet. One interesting thing I have read. though, is that the adrenal hormones might also inhibit the thyroid, by causing "reverse T3" (rT3) to be made instead of T3.

"Wired and tired" is supposed to be a symptom of adrenal issues. Feeling stressed out for nothing, is definitely a big part of my symptoms too. Also have that same challenge of being unable to wind down, somehow, always too tense, almost never really relaxed. I link it to a head injury in my teens (PTSD). Have you had stressors earlier in life that might have caused a sustained output of cortisol, hence keeping your ANS in a more or less constant state of sympatic activation ("fight & flight")? The body needs to be in parasympatic mode ("rest & digest") to recover and rejuvenate, if I understood it correctly. Would not surprised if good sleep is a big part of that...
I did at 12... and now at 40 I found myself with P.O.T.SYNDROME, a mild brugada ,and like since 10 days a 15 TSH.... and yet i haven't seen an endocrinologist cause i suspect he will not know that p.o.t syndrome may cause this adrenal fatigue . My t4 and 3 within range....i m 're edit. This is a link I suspect some would want to banish...i m.sorry about these rules although sometimes they do are excessive in both ways. It actually does not force to buy anything and can help.about a subject.
 
Last edited:

HelloHere

P.o.t.s, brugada,and now high Tsh or ME/CFS?
Messages
12
Location
south east coast US
Did that cause you to wake up at 4 AM? It happens to me a lot, I wake up between 03 and 04 wide awake with a racing pulse. Maybe it is high cortisol?

Did you ever figure out why your body decided to pour out max cortisol at a time that should normally be peaceful & deep sleep?

Cortisol is the major fight & flight hormone, so I am wondering what might the perceived stressor..or threat..that makes the body want to go into full alert?

Since I have circulation issues - OI, POTS, dizzyness - could it be that the blood pressure goes so low during night that it causes an adrenalin burst to increase heart rate and constrict blood vessels?
Yes tendencies to bradycardia....it seems logical .. I wake up at 4/5 or 6. Not necessarily though with heart racing at all. As in no.... but my case is pbbly different. Not new that depression does that. As hypothyroid sets in maybe. My high tsh were taken from blood drawn not in the morning.
 

TiredBill

Senior Member
Messages
335
How did yesterday go, & how are you doing today @TiredBill?

Yesterday was good to fair. I felt the CFS lurking yesterday, so I decided to take it really easy. Then last night I couldn't sleep. Bad insomnia. And today I'm back in the land of the undead.

I wasn't too confident that a once-in-a-decade type day streak would continue unbroken.

I'm both a little disappointed and VERY GRATEFUL to have had a day where I felt refreshed and CFS was so far in the background that I had to search for it.

It gives me hope that we are not permanently broken, even after--in my case--more than three decades.

I wish I had better news. But as we all know this is an insidious illness.

I'm still hoping to dial-in my sleep. The ASV machine has shown it can help (understatement of the year), but there is still a problem in the man.

I remain optimistic.

Thanks for asking (and thanks to all for the information on Cortisol (et al). I'm not feeling the mental energy to dive into the links today, but I will soon.

Best to all,

Bill
 

TiredBill

Senior Member
Messages
335
Good morning all,

I realize I've painted myself into a bit of a corner--as a thread about my nightly sleep quality would be quite boring--but I didn't want to end on a bad note.

So, let me report that last night was another good night. Not a "rainbows and unicorns" type night, but I'm definitely feeling the marked impact that refreshing (or semi-refreshing) sleep has in pushing CFS symptoms towards the background.

I also know what a challenge it is for us to get that restorative sleep.

My hope is you all enjoy some really restorative sleep soon!

Best,

Bill
 

TiredBill

Senior Member
Messages
335
@TiredBill, as someone with decades-long sleep problems, I'm interested in hearing about your sleep! Glad you had another good night. Insomnia is a tough dragon to slay.

My best advice to you (as stated in another thread) is to use the (free) software called "Sleepyhead" so you can see all the data graphs that your APAP/CPAP machine puts out to an internal SD card on your computer.

By monitoring what is going on (and with help from others) it is possible to either dial-in your current machine, or--in rarer cases like mine--learning the type of machine isn't suited to solving the problem.

PM me if you want a link to a great support forum where Sleepyhead data can be used to customize and analyze your therapy. I would still be using the wrong machine (for me) if I relied on my sleep doctor alone, even though I had the (arguably) best APAP machine. And, while I used APAP, I was able to get the most from it by optimizing the setting vs leaving it wide open (4-20) in full-auto mode.

Bill