• 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 (FM), 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.

Adrenal Issues and treatment problems

caledonia

Senior Member
I started on the modulating Adrenal Cortex Extract over the last week or so. I started with one drop at noon. My noon cortisol is really high, causing anxiety. The drop made me fuzzy for several hours. This has faded out the longer I take it. It's been very helpful for the anxiety, I would say about 80% resolved.

I've worked up to 3 drops at noon, increasing every 3-4 days. The goal is 4 drops at noon, as long as it's tolerated. Then I will start the same process at 3pm, then eventually the same in the morning.

However, I'm still sleeping til noon, so I'm not sure what I'll do about the morning slot right now. I'm hoping my sleep cycle will resolve itself by the time I get to that point.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Caledonia and others, I saw Neville as well. I was on all that you are. I think it depends on where everyone is. Having high cortisol changes everything. I had high for years than it shot over to low. When you get into the low end of cortisol, what you can take and tolerate IMHO, becomes less.

ACE worked at one drop but then the more I added, I couldn't get out of bed. After ACE, DHEA, pregnenelone, and I am sure there was some other concoction, he said to me; you are better with nothing. I crashed for months. I feel that all of these hormones become like a soup and no one really knows what does what.

Pregnenelone and DHEA, can offshoot into making several hormones. If you have biochemistry that allows you to make one thing over another, this can be a real problem. I made a ton of estrogen on DHEA. Wasn't good and killed my adrenals. I was out for months.

Sometimes I think it's good if these docs give you guidance, but follow your own instincts and the more you add to the mix, the soup starts becoming less flavorful and confused.
 

caledonia

Senior Member
I'm very sorry it didn't work out.

To clarify my history, my cortisol and DHEA were very low for at least 5 years, based on testing (probably more like 10 years based on symptoms). I've only been able to raise the cortisol over the past year, so now it's high/normal. DHEA is still very low, and since I don't tolerate direct supplementation with DHEA, I'm trying the pregnenolone.

If anything starts getting worse, I will discontinue, get back to a baseline and restart at a lower dose. I'm not a fan of pushing through. We are so sensitive, a lot of times less is more. I have had a lot of success with micro-doses.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Very wired, but very tired...?

Hi Spitfire,

Would you consider yourself part of the very wired, but very (VERY) tired subset?

Is it hard to shut your mind off? Even though you're beyond exhausted, do you still feel restless, irritable, and worry a lot about the future?

Dan

p.s. also...another odd question: Looking at the big picture, what kind of diet do you tend to eat...more meat, or more vegetarian?
 

Cindi

Senior Member
Messages
229
cortisol b12 relationship

Hi all

This question is for the ones who had taken Asi test and test gave a result of low cortisol for most of the day.
I am trying to find out if there is any relationship between low cortisol and high serum b12.So, could you please post your serum b12 test results?Mine was above top limit.Thanks.
 

john66

Senior Member
Messages
159
Hi Spitfire, I read the whole thread, sorry you are having such a rough time. I seem to have a similar reaction to vitamin D, dhea. I just went to Greece for family reasons and have been in a crash for almost a month. Tried LDN as a kick start, just made my bp spike and made an already bad situation worse. Going there, on a plane from NY to Germany, the person next to me was sick and I'm pretty sure I wound up with what ever he had in Greece. Had to have a doctor come to my room a few times for fluids and to bring anti-emetics and pain killers. It is terrifying getting hospital sick away from home. I regret going, I had somehow let my wife guilt me into going and I know I would pay in spades. I dont seem to handle any prescription well. I find if I think too far out into the future, it becomes overwhelming and I get frustrated.
 

caledonia

Senior Member
The pregnenolone, which at first was helping, has now turned into this horrible overstimulating thing causing anxiety, depression and feeling like I'm jumping out of my skin. This was at a dose as low as 1/4 of 10mg (2.5mg). So I've discontinued and am waiting to get back to baseline, which believe me, can't come soon enough.

The plan is then to try some Seriphos to calm down additional anxiety I'm having at noon from high cortisol. The modulating ACE is helping some there, but not totally. I've done Seriphos in the past and it was fine, so I'm expecting to still be able to tolerate it. It's supposed to be well tolerated anyway.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
The pregnenolone, which at first was helping, has now turned into this horrible overstimulating thing causing anxiety, depression and feeling like I'm jumping out of my skin. This was at a dose as low as 1/4 of 10mg (2.5mg). So I've discontinued and am waiting to get back to baseline, which believe me, can't come soon enough.

The plan is then to try some Seriphos to calm down additional anxiety I'm having at noon from high cortisol. The modulating ACE is helping some there, but not totally. I've done Seriphos in the past and it was fine, so I'm expecting to still be able to tolerate it. It's supposed to be well tolerated anyway.

That was similar to my reaction with pregnenolone as well as alot of anger. my doc said that u just dont know what hormones and neurotransmitters pregnenolone will hit, for some it works and other it doesnt, frustrating as those first few days on it you feel like you have found the cure for cfs but like u say it turns nasty. Sorry to hear it didnt work out for you but thanks for sharing your experience as im sure it will help others.

cheers!!!
 

Cindi

Senior Member
Messages
229
The pregnenolone, which at first was helping, has now turned into this horrible overstimulating thing causing anxiety, depression and feeling like I'm jumping out of my skin. This was at a dose as low as 1/4 of 10mg (2.5mg). So I've discontinued and am waiting to get back to baseline, which believe me, can't come soon enough.

The plan is then to try some Seriphos to calm down additional anxiety I'm having at noon from high cortisol. The modulating ACE is helping some there, but not totally. I've done Seriphos in the past and it was fine, so I'm expecting to still be able to tolerate it. It's supposed to be well tolerated anyway.
Hi
May i ask you if you had your dhea-s checked before starting it.Was it low?. It could be that you did not need it. I am on about 25 mg of pregnenolone and have no problems with it.my dhea-s is on low side of normal with this dose. best wishes.
 

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
Yes, I get all of my hormones checked. I also do not take plain DHEA, I take 7 Keto dhea. Pregnenalone has been great for me. I get it all compounded, nothing over the counter.

Do you get it all compounded?
 

Cindi

Senior Member
Messages
229
Hi

I am not using compounded form. I use products with safer fillers. Like Pure Encapsulations,Karuna,etc..best wishes.
 

Cindi

Senior Member
Messages
229
Hi
I have not read your story so not sure if you are taking cortisone support.Could it be that you need cortisone?best wishes.
 

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
So is a doctor not guiding you with the testing and compounding? If a doc. does it, then he knows what exatly you get when compounded. Amounts can be easily changed up and down when all hormones are balanced with someone that knows how. It isn't easy without a great doctor.
 

caledonia

Senior Member
Nine days off pregnenolone. Started Seriphos yesterday. It's helping to calm things down, although it's making me kind of foggy. Hopefully this will wear off as time goes on. Been having a lot of problems with no appetite, weak shaky legs, low energy, messed up sleep, along with the nervousness, but every day is a little better.
 

Cindi

Senior Member
Messages
229
I used Seriphos for many years Seriphos. It always made me foggy. That was why i never was able to use it fully.At this moment my brain is in awful situation so i can not even evaluate how a supplement effects me most of the times.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Danny, you asked a question that I never saw. It vascilates for me. (sp) Sometimes, like right now, I am so wired and tired. Over the winter, I am exhausted. The lack of sun kills me and the adrenals. I remember a doctor said something to me a long time ago. "The adrenals don't just become overstressed on their own. Something makes them that way. A virus, yeast, CFS, lyme, etc. As long as you have those factors going on the adrenals will always be unwell. You need to treat the other illnesses to help the adrenals."

I have done a lot for the adrenals, and I can honestly say, I think she is right. Something else is putting pressure on them and until that is addressed, they are going to be low and weak.

I am a protein, meat eating person. I can't not have meat. I get sick.

Sometimes I think all of these concoctions, are like hormonal soup for people. You may feel better because they are actually pushing the adrenals. With me, I felt good on ACE and DHEA in the beginning and then I crashed for months. It was awful. And, I wasn't even doing anything. I was resting constantly.
 

alice1

Senior Member
Messages
457
Location
Toronto
Spitfire i'm sorry to read you're still feeling awful.
i had a big surgery 2 years ago and after i wasn't picking up at all.in the new year i developed such extreme allergies my eyes were always watery and hurt like hell.after several allergist(that took months)i find that my allergies are dustmites,dust,pollens,mold and ragweed along with nightshade and mold related foods and most sugars.diets for me are easy i can control that.it was suggested i do shots.i was terrified because we're so sensitive but i had to try as i couldn't leave the house without being in hell,a different kind of hell besides cfs..they started to work.relief.this is on 1 shot only for dustmites.when i tried to add a couple of the others i crashed.so back to only the dustmites shot.i also found a doc who does,hormones,cortisol,adrenals etc..he called me last wed; and asked how i was even standing..i was flatline on everything.he also said you have such bad allergies because you have no adrenals.he put me on a low dose of cortex.5mg am 2.5 afternoon..hormone creams estrogen,testosterine and progest also dhea.my second day of taking the cortex and i felt so good.what i am doing though as most docs don't get it is taking half of the low dose of everything.it's so good to come and read what all your experiences have been.extremely helpful.not sure how long i'll stay on the cortex but when i feel strong enough i'll be doing the licorice extract,ldn and ala.slowly to be sure.for me it was the surgery.i always had low adrenals but this was a whole new ball game which some of you know all too well.thank you all for sharing such important info.pray i don't tank and i'll keep you posted.i hope all of us find some relief in one form or another.