My recent saliva test showed low DHEA (91 - range 106-300) and low cortisol levels (Diurnal cortisol pattern is consistent with evolving (Phase 2) HPA axis (adrenal gland) dysfunction.)
I passed an SST, but my endo didn’t seem interested in helping me further (too focused on supressed TSH) so I’d like to try and help myself by supplementing.
I have a few questions if anyone can help please?
Is it okay to take a DHEA supplement at the same time as an Adrenal cortex supplement? If supplementing with one would increase the other, then I suppose it could be better to do one at a time.
Is there any chance of either being prescribed on the NHS?
How quickly have people found a benefit in these supplements (i.e. do I have to budget for taking them for months/years)?
I’d love to hear from anyone with experience of the NHS process for dealing with low cortisol and for anyone who has taken these supplements. I feel a bit nervous about going it alone.
Thank you for reading.
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Andie222
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What do you mean by 'passed'? It isn't a pass or fail test. If you have low cortisol the test is supposed to tell you if it's an adrenal problem or a pituitary problem.
I was told my cortisol rose as it should so I don't have Addisons. No other information given. I'm assuming this means it's not primary adrenal insufficiently, but could be secondary.
Yes, that's what it means: there's nothing wrong with our adrenals themselves, they're just not getting the necessary stimulation.
I don't know much about adrenal cortex. My cortisol was so low, a doctor put me on HydroCortisone for a couple of years, and they recovered. He also prescribed me DHEA, because that was low, but I couldn't take it. It all converted to testosterone! Couldn't even take the 7keto DHEA, which isn't supposed to do that, but it did. But I was fine with just the HC.
If your cortisol isn't too bad, you could just try giving your adrenals some TLC: high protein breakfast on rising (take levo later); plenty of vit C and B vits; lots of rest and as little stress as possible; and make sure you get enough salt - no low-salt diets!
Hello greygoose. What is the logic of taking levo later in the day? Is that just to keep it away from the protein or is there another benefit? Sadly no chance of lots of rest and little stress for me. But taking c and b vits and upping my salt intake. I'm not convinced that alone will be enough.
Well, as we don't know exactly how low your cortisol is, it's impossible to say if that would be enough. And, of course, you do need optimal levels of FT3 for the adrenals to start working again.
I don't think it has anything to do with protein in particular, but levo should, of course, be taken two hours after a meal for maximum absorption. I don't think much if any research has gone into finding exactly which foods affect absorption. Maybe all of them do. But certainly caffeine does, so you do have to keep it away from tea or coffee. Better to be safe than sorry, I always say.
So, your doctor gave you HC for a couple of years...? Did he measure your cortisol levels regularly? I am asking because I have been using Dr. Peatfield´s books as some kind of guide, and he recommends trying to get off HC after a couple of months (while stressing you may need to go back on it if you crash). Just interested in various options as I am currently trying to find the best solution for me, so trying to find out as much as possible about other people´s experiences (good or bad). Can I ask how much HC your doctor put you on, and how many doses a day? How did you eventually wean off it? Sorry for all the questions, but I have not found many posts here by people on actual prescription HC (most only mention adrenal glandulars or cortex).
Well, when I say he put me on it for a couple of years, I actually mean that he put me on it and told me to stay on it until my levels rose and I felt better. That took a couple of years. He didn't specify a time limit.
Yes, he tested my cortisol levels regularly.
For me it was a very good experience. I felt almost instantly better.
I'm afraid I really can't remember how much he put me on, it was about 15 or so years ago. But, we started out low and increased as necessary. He even precribed more than I actually needed so that I'd have extra to fall back on if the need arose.
I took it in two doses: one first thing, the other around 12-1 pm. He said never to take it after 1 pm if I hoped to come off it some day. He said that if you take it throughout the day, mimick adrenal out-put, the adrenals will shut down. And, if they shut down, they won't start working again. Dosing throughout the day is for people adrenal insufficiency, not people with adrenal fatigue like me.
I weaned off it by slowly reducing my dose, but I can't remember the details, I'm afraid.
Do you know how low your cortisol levels need to be to get hydrocortisone prescribed please? I have low cortisol and all they symptoms, but passed the short synacthen test. Am wondering if hydrocortisone would help.
I have no idea how things are done in the UK, I don't live there. My HC was prescribed by a French doctor.
As I said above, the short synacthen test is not a pass or fail test, it's to find the reason for your low cortisol. Adrenals or pituitary? But most doctors don't even seem to know why they're doing it. I never had that test, just an 8 am blood test.
If by 'passed', you mean that your adrenals responded to stimulus, then you don't have an adrenal problem, and further investigation should be carred out. But doctors just don't seem to understand the need for that. But if you do have a pituitary problem, the HC is most certainly necessary. I just don't understand the logic in doctors' heads surrounding all this. Have you asked questions?
Hello greygoose and CornishChick. It seems to me that having ruled out Addisons, the doctor is no longer interested. I couldn't tell whether this was because he knows nothing about it or just wasn't interested. It was a phone call so no body language to interpret. He just asked me to get more thyroid Nd b12 bloods and come back in 6 weeks.
I am not really sure what to ask for when I go back.
But in the meantime (can't wait forever!) I decided to try ACE and I think it is having a positive effect. I'm not sure if I want to tell the Endo what I'm doing though.
I think it's more likely that he knows nothing about it. His reaction just isn't logical otherwise. He's proved that there's nothing wrong with your adrenals - and he calls that a 'pass'! - they just lack stimulation. So, the pituitary must be at fault. And, if the pituitary is not firing on all cylinders, the next question should be: what other hormones are you low in apart for ATCH? The pituitary makes lots of hormones.
Also, you cannot function correctly with low cortisol, so logically, something needs to be done about that. You cannot continually stimulate the adrenals to make cortisol, so the next logical step is to supplement it, as you would thyroid hormone when the pituitary is not making adequate TSH, making you hypo. Obviously a complete lack of knowledge and logic. I cannot for the life of me imagine what they think is acheived by doing this test in the first place.
Therefore, my first question would be: why did you do this test? Second question: what are you going to do about my low cortisol? And, carry on from there.
That seems very logical. I’m not sure how an endocrinologist doesn’t know this stuff, but perhaps they are too busy to care. I am going to be more assertive at my next appointment.
They don't know it because they didn't learn about it in med school. As far as the endocrin system goes they only seem to learn about diabetes, and most of them are diabetes specialists. They've been lead to believe that the rest is unimportant. Don't be fooled by their title! For most of them, the bulk of the endocrine system is a complete mystery!
Thank you for your reply. I did pass the SST (8.55am 245 nmol/l, 9.25am 592 nmol/l). However I have not had any further investigation by the endo. I am not sure what else to do about my low cortisol, I have tried Adrenavive, DHEA, pregnenalone and T3- my T3 has always been top of range.
I’ve heard nothing from the endo since. What further tests should people be asking for please? I have more frequent days feeling wiped out and it definitely feels adrenal related, not just tired. The adrenal cocktail used to give me an instant perk up, but isn’t working now.
I wish I had some answers for you. Sounds like we are in a similar place. I feel like there should be some test for the pituitary to see what's going on, but I haven't heard of one.
This is an old thread so it might be worth you posting your question as a new post.
Thank you. I did post not so long ago on similar lines but still feel like I don’t know what to do next for help. It ruins your life doesn’t it? I’ve got two young children and at the minute have no energy to do much with them. Some days I’m not too bad and I wonder why the rollercoaster?
Yes it makes life very difficult. I don’t do much with the children. Just managing with the stuff I have to do, there is no energy left for nice to do’s. Need to try and make a birthday cake today. Huge temptation to go to the shop instead!
Ahh bless you, we are definitely in the same boat. So seems from what GG said, we need to ask for pituitary tests. Let’s research and request them. If you want to support each other and share notes, feel free to pm me and we can both try to get help.
I am fairly sure my endo has signed me off after my SST, so might be back to square one with the GP!
With the ATCH test, would this have to be done alongside the SST to check the response? I don’t fancy another SST and wondered if the GP can just do an ATCH blood test?
I am not sure what else to do about my low cortisol, I have tried Adrenavive, DHEA, pregnenalone and T3- my T3 has always been top of range.
But, if the problem with the adrenals is that they lack stimulation to make cortisol, none of these supplements are going to do anything. It's the same as the thyroid when there's a pituitary problem, without the TSH to stimulate the thyroid, it's not going to make hormone whatever supplements you take.
It's the other pituitary hormones that need testing: HGH and the like - can't remeber them off the top of my head but you can google pituitary hormones. Did he actually measure your ATCH during the SST, before or after?
I don’t think my ATCH was tested either but I’m going to ask at my next appointment, and if it wasn’t then I’m going to ask them to do it. No harm asking!
Hi Andie, my saliva test gave the same result and I've just started on ACE. For me, it had an effect on day 1 or 2. I hope to take it for a few months then wean off, but to early to say. I had to stop my NDT for a few days as my FT3 was too high and starting ACE or HC in that situation can be uncomfortable.
I'm going it alone too and totally agree, it's not a comfortable place to be but the results for me are encouraging so far Dr Peatfield's book is helpful, also STTM though not universally popular here, and Dontforgetcortisol's bio and posts on this forum have all been really helpful.
Thanks for your reply. That's great that you felt such a quick response to ACE. Which brand and strength are you taking? I've been following Dontforgetcortisol's posts and they have given me the confidence to get this far. Not sure where I'd be without this amazing group.
Are you using HRT? If you are going to add DHEA it can effect your sex hormone levels as GG says so you'd need to keep an eye on them, my DHEA is about the same as yours and I use HRT to sort my individual levels out.... DHEA is a bit unpredictable and is banned here and can get stopped at customs if you can find someone to send from abroad apparently 🤷♀️
Hi Eeyore. Yes I've been on HRT patches for 3 years. I've not had my sex hormone levels measured, but assume that as my DHEA is low that the HRT isn't helping.
Do you know if DHEA levels fluctuate over time, or if it is a downward trajectory as we age?
I did look into this before and probably forgotten half of it 😬 downward trajectory is right... but I think you can have low DHEA (precursor to hormones) and still have good levels of the individual hormones if you supplement them? So I opted for the individual route 🤷♀️
My DHEA is now 71 (thinking it panned again due to a time on reduced T3/4 and adrenal fatigue which I'm now supporting.... but my estrogen and testosterone are at good levels... never tested progesterone?
Saliva DHEA Jan 2023 91pg/ml and by Aug 23 71pg/ml sex hormone levels stayed the same
Interestingly looking at Medichecks levels both at 7.5 first one considered 68% second one a year later 138%... I'm guessing a birthday made the difference and I changed range 😕
Bit from Medichecks...
About
DHEAS is the sulphated form of DHEA, a hormone which is produced by the adrenal glands and is responsible for male characteristics in both men and women. DHEAS gradually declines from the age of 30 onwards.
What might a low result mean?
DHEAS gradually declines from the age of 30 onwards.
Low levels of DHEAS may indicate adrenal dysfunction and could contribute to a low libido, fertility problems and in women, osteoporosis.
What might a high result mean?
A raised result in women may contribute to hirsutism (excess hair) as well as male body characteristics. It can also be raised in polycystic ovary syndrome.
In both sexes raised DHEAS may indicate Cushing's disease (when the body produces too much cortisol) as well as a possible adrenal tumour.
Raised levels are often seen in individuals who supplement with DHEA.
Do you think the patches are doing the job or do you still have symptoms? I didn't get enough of a hit from the patches... probably because the GP only hands out 50's... I found if I stuck 3 on at a time BINGO!... off to a menopause clinic to get some proper advice... I like the individual hormones as I have more control
Just had a look back at previous posts... your Endo said not to use adrenal cortex? Can't imagine why as it certainly helps, I started on them and having retested my cortisol saliva have swapped to hydrocortisone support which has been great so far, I'll give it a couple of months and then drop back onto cortex is my thinking... we seem to be walking the same path with very similar issues
Don't expect any help from the NHS as they don't think adrenal fatigue is actually a thing... bit like yuppy flu
Yes I think the patches are working for me. They dealt with the nighttime hot flushes. But when you have lots of symptoms it’s difficult to know what to blame…thyroid or menopause.
I really don’t know why he is against adrenal cortex. It was a message via his secretary so I couldn’t question him. I hoped to speak to him at my appointment at the end of august, but unfortunately I only spoke to his colleague and he was not very helpful. I can’t wait until the next appointment without doing anything.
I’m curious, if you don’t mind me asking, how long did you take adrenal cortex (what strength) and how soon did you retest saliva cortisol? It’s an expensive test and so I couldn’t do it too often. Presumably your cortisol levels had risen so why did you switch to HC?
I was on cortex for 6 months gradually building up to max 550mg per day and my cortisol was still on the low side when tested so I swapped to hydrocortisone which has been a great help and considerably cheaper than cortex... whilst on cortex I had a SS test which showed my adrenals we able to react, though cortisol still low.
Hi. Thanks for sharing. 550mg sounds expensive! Is hydrocortisone a tablet or cream? I sometimes use cream (1%) for my eczema but assume it’s not the same thing.
You could ask your GP to test your sex hormones. I have low DHEA, testosterone and cortisol. My GP said if you take HRT it should increase your testosterone. So I’ve started it although I don’t have menopause symptoms yet.
Also, have you read Dr Myhill’s website about DHEA? She used to prescribe it, but now uses pregnenalone to increase DHEA as it’s more effective. I have tried both and neither made me feel any better.
A few months ago she said she would test female hormones, but then forgot to write it down so it didn't happen. I probably need to chase up. I have been on HRT for 3 years so on that basis my testosterone should be ok! No I haven't seen Dr Myhill's website. I will have a look.
I am interested in finding out more about DHEA myself. I know some doctors recommend it if you take cortisol for adrenal fatigue. But it seems to have quite a lot of side effects, especially if you take too much. Many doctors seem to prescribe 25-50 mg daily, while I read that a more physiological dose would be closer to 5 mg daily. I don´t know much about it, but read an article about DHEA being ( over)prescribed by anti-aging doctors in Belgium and causing quite a few nasty side effects, especially when combined with pregnenolone which apparently can be converted to the same sex hormones as DHEA.
I think that is where I got to with it... bit of a loose canon, you can't really know what it will do till you try it... which made separate hormone more appealing... not quite sure why it is so popular elsewhere but banned here?
I agree. I don't think I feel confident to try it without medical support. I do worry though because I've read that low DHEA can cause osteoporosis in women.
I wouldn’t bank on any help from an NHS Endo regarding low cortisol or DHEA. My cortisol was low and my DHEA was <10 on my Regenerus saliva test. Not only was I refused T3 but was told he would be happy to monitor me if I bought my own!! but with regards to my dire, unmeasurable DHEA, his response was “that would mean you taking steroids and we don’t want that “ so, in other words - you’re on your own.
I’m afraid I had to go “private”. I couldn’t tolerate Uni Pharma or Tiromel and I paid grossly inflated prices for the usual T3 brands doled out by NHS if I’d been fortunate enough to be given a prescription. I now take T3 in compounded capsule form (currently from Roseway Labs) on a private prescription.
As to the cortisol/DHEA, still no real help although my private Endo wrote to my GP asking him to prescribe testosterone which I can’t tolerate either (it makes me dizzy). I’ve been taking Adrenavive adrenal cortex supplement and it seems to have brought my daily temperature up from mid 34 to low 35’s, so there’s a way to go yet.
I can’t tell you how badly I’ve been treated on NHS and, when I’m up to it, I’ll be updating my profile.
I’m sorry to hear how unhelpful the NHS has been. it’s a familiar story on here. I have been looking for UK suppliers of Adrenavive II and haven’t been able to find any. Do you get yours in the UK?
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