• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Very low pregnenolone & DHEA, normal cortisol

Hope78

Senior Member
Messages
112
Location
Germany
Hi,

I did a pregnenolone and DHEA-testing and both came back really low:

Pregnenolone-S 13,7 ng/l (70-250)
DHEA-S 49 ng/dl (100-300)

Cortisol 103 ng/ml (50-250)

My sex hormones are also normal (estrogene, progesterone), testo is always in the more lower to very low range.

I consulted 2 doctors and both were shocked about the numbers as I am only 38 years old (female).

They say these values are only seen in very old and aged people.

One of the doctors suggested failure of the adrenal cortex, but the other one told me the cortisol level is still in the normal range, so no adrenal failure.

I suffer from extreme exhaustion and I am never tired. But my body feels broken and injured. And I cannot sleep, no single night.

So doctor told me to take preg and dhea but is also afraid of making my insomia worse as pregnenolone is a potent gaba-antagonist and insomnia and headaches are common due to activation of certain receptors.

As pregnenolone is manufactured in the mitochondria, can this be the problem? Pregnenolone steal does not seem the cause because I have no elevated cortisol and my sex hormones are all in the low-normal range.

Also I am afraid of getting addictec to pregnenolone as several members reported some kind of "withdrawal".

I am not a typical cfs sufferer (no viral onset), but share many symptoms like bone crushing exhaustion, insomnia, food intolerances, mast cell activation, intolerance to most medications and supplements, temperature dysregulation and other things.

If anybody has some suggestions, informations/experiences in this topic, I would be so grateful. I really feel a bit lost on this.

Thank you!
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I am a Male and recently started testing low in pregnenolone, been taking DHEA for years now via my specialist, also take clomid due to low Testosterone, been on that for years as well!

My Dr had me do bloodwork (before 10am) recently, and my Cortisol tested fine, although I have done the saliva testing in the past, and my cycle is opposite of what it should be. Think that is High at night, low in the morning, or perhaps vice versa.
 
Messages
88
My partner Elle had an Adrenal Stress Profile test which indicated very low DHEA (around 10% of the minimum expected range!) & normal Cortisol.The test didn't measure Pregnenolone.

Her result was: DHEA 0.03 nmol/l (Ref range 0.25 - 2.22 nmol/l)

Simplistically (probably!) the way we understand this is:

Pregnenolone's
- a precursor of progesterone, which is a precursor of Cortisol
- a precursor of DHEA

Under stress, Pregnenolone is 'stolen' from making DHEA, into making Cortisol. If your low Pregnenolone makes Cortisol but not DHEA then maybe that could be why your DHEA's low.

We tried to find other people with very low DHEA & it doesn't seem very common among people with cfs - it seems more usual to find abnormal levels of Cortisol.

Elle has unexplained weight loss, which we think may be related.
 
Last edited:

Sancar

Sick of being sick ~
Messages
98
Location
So Cal USA
@Hope78 ~ I had low DHEA. I read and article on how low DHEA is caused by a drain from the immune system when it is overloaded. It is noted to be especially low in Lupas patients. They were recommended to take as much as 200mg a day under the supervision of thier Doctor. My Dr had me start out at 25mg which did nothing. So I was to titrate up to 75mg. I noticed a bit more strength/energy. I then went up to 150mg, taking 75mg Am and PM. It has made a difference for me.
I am very fortunate that I have an Internist MD that is "very good" at balancing out my hormones. I hope you are able to find a Doctor that will work with you to balance out your hormones. I know it's challenging. It's took me years to find one. It has taken a year to get mine as 'balanced' as they are now. My basic ME symptoms ar still there, awful. But ~ that being said I'm very grateful to has the issue with my hormones being taken care of.

I hope the helps some...:music:
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,099
Location
australia (brisbane)
Supplementing with dhea and pregnenolone could help but need to start low and slow. What i did was start with recommended dose but was too much and overstimulated me badly. What i found helped was to start with 5mg dhea first as dhea is important to help balance the effects of cortisol. I slowly increased to 25mg and then small doses at night and slowly increased to 25mg. So daily total 50mg which is whats usually recommended for males. Females usually is about 5 to 10mg so maybe require 1mg increments.

Once stable on dhea id retest pregnenolone and other adrenal hormones. 50mg of pregnenolone is the normal recommended dose but again i found starting with 5 to 10mg and increase in similar increments up to 50mg. If overstimulated by a certain dose than back down for awhile. I only used pregnenolone in the morning so no sleep issues from this accept when i started to high a dose at the bery beginning. Slowly tapering up low doses helped alot.

Thats basically how i ended up taking these hormones.

Good luck.
 

Hope78

Senior Member
Messages
112
Location
Germany
Hi, thanks for your replies!

We tried to find other people with very low DHEA & it doesn't seem very common among people with cfs - it seems more usual to find abnormal levels of Cortisol.
PeeWee: I thought my problem is cortisol, too. Because 4 years ago I had very low saliva testing. But cortisol normalized and now my precursors went down. I think it will really become a problem when I enter menopause!

I hope you are able to find a Doctor that will work with you to balance out your hormones. I know it's challenging. It's took me years to find one.
Sancar, oh yes, it really ist. Because in CFS it's so complex and there are so many other things going on. I saw a new doctor and he seemed a bit overwhelmed but willing to give it a try with me (most doctors are happy when I am out of their office)

Supplementing with dhea and pregnenolone could help but need to start low and slow.
Heaprsreal: the doses my doctor suggested were way too high as I am among the ultra sensitive folks. So I convinced him to start with 2.5 mg DHEA instead of 25 and the same for pregnenolone. The pharmacy is now manufacturing the pills for me and I will receive them at the end of the week.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,099
Location
australia (brisbane)
Heaprsreal: the doses my doctor suggested were way too high as I am among the ultra sensitive folks. So I convinced him to start with 2.5 mg DHEA instead of 25 and the same for pregnenolone. The pharmacy is now manufacturing the pills for me and I will receive them at the end of the week.

Good stuff. Good luck.

Keep searching for abnormalities, infections and immune dysfunctions etc.