I’ve just had my third cortisol saliva test done and am interested to get advice from the experts on here eg the very knowledgeable humanbean !
It basically tells the story of how I feel. Unable to get out of bed without a cup of tea. Able to do some light jobs/activities in the morning. Tired after lunch to the point I could often nap at 230-3pm and I’m slowing right up. Dire by evening so I can’t go out, drive, socialise, exercise. I also have chronic insomnia and only sleep 10pm-2am without sleep aid.
Thoughts on how you’d tackle it would be much appreciated. Many thanks.
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CornishChick
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When someone has a set of six results I always cop out by sticking to the same four given in the optimal example in the above link and ignoring the others. I use the Cortisol AM 30 result (i.e. the highest result of the day), plus the Noon, Evening and Night results.
Also, I always use the Reference Intervals instead of the Optimal Ranges because I've never seen an explanation of how the optimal ranges are derived.
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A good article on the CAR (Cortisol Awakening Response) is this one :
On awakening cortisol should increase about 50% in the first 30 minutes then begin to progressively drop the remainder of the day.
Your waking cortisol (6.4 with a range of 6 - 20) rises by 150% rather than 50%, and your result is less than 3% through the reference range. This suggests to me that your adrenals are really struggling hugely to produce as much cortisol as they can on waking up but the first result is simply too low for good health. In theory your waking cortisol should rise to 30 (morning at top of range) but your waking result (6.4) starts much too low to have a hope of ever reaching 30.
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Optimal levels
• Morning at the top of the range with your ranges this is 30
• Noon approximately 75% of the range with your ranges this is 11.025
• Evening close to 50% of the range with your ranges this is 4.75
• Nighttime at the bottom of the range with your ranges this is 0.33
Your results
Sample 1 : 16 (7 - 30) 39.13% through the range
Sample 2 : 2.3 (2.1 - 14) 1.68% through the range
Sample 3 : 1.2 (1.5 - 8) Under range
Sample 4 : 1.4 (0.33 - 7) 16.04% through the range
Compare your results to the optimal levels :
Sample 1 : Optimal = 30 ; Your result = 16 ; You are producing approx 53% of optimal
Sample 2 : Optimal = 11.025 ; Your result = 2.3 ; You are producing approx 21% of optimal
Sample 3 : Optimal = 4.75 ; Your result = 1.2 ; You are producing approx 25% of optimal
Sample 4 : Optimal = 0.33 : Your result = 1.4 ; You are producing approx 424% of optimal
Totals : Optimal = 46.105 ; Your result = 20.9 ; You are producing approx 45% of optimal
Your total cortisol for the day is under half (45%) of the optimal
Your highest result of the day is just over half (53%) of the optimal cortisol for that time of day
Samples 2 and 3 are very low and must make it very hard to get through the day
Sample 4 being over 4 times the optimal would explain why you struggle to get to sleep, and if your cortisol stays higher than optimal during the night it probably explains why you wake up after limited sleep.
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Some questions...
1) What have you tried in terms of self help?
2) Have any self-help experiments actually improved things?
3) What have GPs and Endos said about your cortisol?
4) Have you had a Short Synacthen Test done?
5) Are your basic nutrients optimal? I'm talking about Iron/Ferritin, vitamin B12, Folate, Vitamin D?
6) Have you ever had tests of zinc/copper? Iodine? Selenium?
7) Do you take a magnesium supplement? If yes, what is it? What dose? How often?
8) Are your thyroid results optimal? What are your latest Free T4 and Free T3 with their ranges?
9) Do you know the cause of your thyroid problems? Is it autoimmune? I'm assuming you are hypothyroid and have Hashi's or Ord's Thyroiditis, but have you ever had Graves antibodies tested? Have you ever had a scan of your thyroid? Do you have nodules?
10) Do your kidneys function well?
11) What kind of diet do you eat? Are you constantly dieting?
12) How much exercise do you do, and what type?
13) Do you include salt in your diet? Do you restrict it?
14) Is your blood pressure high, "normal", or low?
Wow humanbean thank you SO much, your knowledge always astounds me. In answer to your questions:-
1 in terms of self help. I have been on LDN for probably 6 years. Initially I thought I’d cured everything and felt amazing, but after a few months that feeling faded.
I tried T3 as I wasn’t over range, that didn’t make me feel any different. I couldn’t add much as my levels were towards the top of range, and I’ve therefore never felt T3 was my problem.
I tried DHEA and Pregnenalone and didn’t feel any different, but i maybe didn’t try them for long enough and i am guilty of not re testing due to costs. I tried Adrenavive seven years ago but never felt any different.
For sleep I’ve tried everything from valerian, melatonin, 5HTP, L-tryptophan and immaculate sleep hygiene which does nothing.
3 My GP sent me for a short synacthen test on two separate occasions as he said my cortisol was low (220 on pre 9am blood test), but I passed both. Which presumably means my adrenals are working, and therefore the problem maybe lies in the pituitary?
4 as above
5 Most of my nutrients have always been okay since I corrected my vitamin D deficiency (22) 6 years ago and I now maintain level of 100. However, my folate is and always has been dire in the 40’s, although in range. I have eaten liver pate until I am sick of the sight of it and my levels are still rubbish.
6 I have never been tested for zinc, copper, iodine or selenium I don’t think
7 I have taken magnesium for 6 years. Currently glycinate l take 300mg of elemental magnesium at bedtime.
8 My FT4 and FT3 is usually towards the top of range and my TSH below 1 for years. However since trialling T3 a few years ago, my TSH is very suppressed and has not recovered. I recently realised I was taking old LDN, as it lasts me ages, so I ordered a new one and retested. My results are now FT4 19.2 (9-19), FT3 4.7 (2.9-4.9), TSH 0.004 (0.35-4.94). I have had the GP on my back to reduce my levothyroxine with my suppressed TSH even though my FT4 was good or a bit low. I will now reduce it.
9 I have autoimmune thyroiditis. My antibodies were quite high. I do need to retest post LDN but haven’t due to cost. I haven’t been tested for Graves, haven’t had a scan and no idea if I have nodules.
10 Kidney blood tests are always fine, I’ve never had a urinary infection, I drink lots of water and think my kidneys function well.
11 I never diet. I eat a lot of protein and good fats. I am pretty healthy although insomnia causes me to crave a sugary snack to keep me going, although I don’t always succumb. I eat healthy stuff like salmon, loads of veg, new potatoes but not heaps of carbs. I’ve been gluten free for 6 + years.
12 I used to love the gym and long walks. I now manage yoga, gentle swimming, a relaxed walk, occasionally some cardio in the gym, but nothing intense and a slow horse ride. I don’t exert myself or push myself, I don’t think it’s healthy to when I have felt low on reserves for so many years.
13 I add Himalayan salt to all my meals. I had low blood pressure and that has helped it. I am aware it’s also good for my adrenals. I sometimes make your recommended adrenal cocktail which can give me a boost mid afternoon, but not always.
14 My blood pressure is now textbook according to my GP following years when I suspect it was low, but is corrected with salt.
I have recently been given a small sum of money so am finally able to get a functional doctor to hopefully help my insomnia I fall asleep within seconds btw but just then wake at 2am for 3+ hours I would however still like advice from the forum to see what people think and check advice is similar to what I’m being told.
Thank you for being so kind in helping you really are an amazing humanbean /human being!
What dose are you taking, and how many days a week?
Bear in mind that I don't actually know much about LDN. I've never tried it myself, and haven't paid much attention to what others have said about it. I was wondering if you have ever tried lowering your dose slightly or raising your dose slightly. Ignore my comments on LDN if you think what I'm saying is nonsense.
Since LDN is "Low Dose Naltrexone" and alcoholics are given (non-low-dose) Naltrexone in "normal" doses, I'm guessing that you have a lot of leeway to raise your dose if you wanted to experiment.
It would be worth reading these entries in wikipedia and the BNF (British National Formulary), to see if any of your symptoms could be side effects of your LDN :
Low-dose naltrexone refers to doses about 1/10th the size of the dose used normally, typically 4.5 mg or within a couple of milligrams of that value.
Alcoholics start on 25mg and then raise to 50mg if they tolerate it. I'm definitely not suggesting that you try either of those doses, but it is reassuring to know that a small raise in the dose of your LDN is unlikely to be damaging if you experiment and double your current dose (for example), or halve your dose.
Naltrexone could lead to withdrawal problems, so bear that in mind if you raise your dose then lower it again.
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Regarding your Free T4 and Free T3...
Have you ever tried T3 only?
What doses of Levo and/or T3 are you taking?
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DHEA and Pregnenalone
I know very little about these.
Note that pregnenolone is required in the process of making DHEA. Pregnenolone is also required in the production of cortisol. It has other uses too.
See this link - note the author posts the first diagram then dismisses it as being misleading, so don't study it for too long! The second diagram might be useful. The last two on the page are my idea of a nightmare, so I ignored it.
There are quite a lot of posts on the forum that mention pregnenolone so it would be worth reading those to see what it does for other people. Also Dr Myhill's website gets mentioned in connection with it as well so you should search that for more info.
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5-HTP
What dose did you take and for how long? It has different effects on different people. See this link :
The interesting thing about 5-HTP is that it (eventually) gets converted into cortisol or increases the production of cortisol (I'm not sure which). I've taken 5-HTP since 2011 at very low doses (50mg per night), and I've kept my dose the same all that time because my cortisol has always been high, and I don't want to add to it. These days I only take 50mg 5-HTP 3 or 4 days a week. I've seen 5-HTP for sale that contains 800 mg of 5-HTP per capsule, which in my opinion is utter madness, but doses of no more that 100mg or 200mg per day in divided doses might suit some people.
I have often wondered if 5-HTP is helpful to people with low cortisol.
Another thing to be aware of is that too much 5-HTP (as well as many other drugs!) can cause serotonin syndrome, which can be fatal.
And another thing to know is that the risk of serotonin syndrome is increased if any of these substances are taken in combination - see the table of causes :
I actually take a tiny dose of 5-HTP and a tiny dose of tramadol (which also appears in the Causes table), but so far I'm still here. But the issues occurring with too much serotonin, and the symptoms it causes, are something that people must be aware of. There are millions of people taking SSRIs for example, then they might start to suffer if they also take some drugs for gut problems or something that allegedly helps them sleep, like melatonin.
Sorry I typed out a long reply and it has disappeared when I clicked on your link!
I’ll start again re LDN I can’t find the dose as the label has faded even though it’s kept in the fridge I take 5 drops and the max is 9, I recall 2.5 being the dose but I’ve no idea what the unit is I have dabbled with lower doses but never gone over 5 drops, maybe I should try.
Re T3, I stopped T3 around 4-5 years ago I think as I felt no different and was over range. I haven’t ever tried T3 only. I take 125mcg levothyroxine although suspect that will be reduced soon based on my bloods and clueless new GP (previous one retired).
Re 5-htp, I am going back years before I knew to record things so I can’t remember what I took, but I’d expect would’ve just been the dose advised on the bottle, which probably isn’t very helpful. It didn’t help me sleep or feel any different so I gave up after a bottle, I’d imagine 3-6 months (sorry not very helpful either!).
Thank you for your help and apologies for the delay in replying, my daughter is quite poorly.
My GP sent me for a short synacthen test on two separate occasions as he said my cortisol was low (220 on pre 9am blood test), but I passed both. Which presumably means my adrenals are working, and therefore the problem maybe lies in the pituitary?
Are you aware of the three different types and causes of low cortisol/hypocortisolism? It is worth studying this link :
Primary Adrenal Insufficiency (AI) is caused by a problem with the adrenal glands and diagnosis requires cortisol testing. (Cortisol is produced by the adrenal glands.) Addison's is the most common cause of low cortisol and is a form of Primary AI.
Secondary AI is caused by a problem with the pituitary gland and diagnosis requires ACTH testing. (ACTH is produced by the pituitary, and is responsible for triggering the adrenal glands to produce cortisol.)
Tertiary AI is caused by a problem with the hypothalamus and diagnosis requires testing of CRH (Corticotropin-releasing hormone) which triggers the pituitary to produce ACTH, which then triggers the adrenal glands to make cortisol.
Primary AI and Addison's Disease is the most common problem causing low cortisol, Secondary is the second most common problem causing low cortisol, and Tertiary is the third most common problem causing low cortisol. It is possible to have tiny tumours on the pituitary or hypothalamus which are hard to spot with MRIs.
This is a description of how the Short Synacthen Test is done :
[Note that the Endocrine Bible has recently been updated for the first time since 2018. I don't know what the changes were, but the latest version is the 2023 version.]
The official way of doing the SST according to the Endocrine Bible requires cortisol levels to be tested at various stages of the process. It also requires testing the ACTH level at the very start of the process. The NHS appears to have given up testing ACTH during the Short Synacthen Test which means that doctors can no longer reliably diagnose Secondary AI, which is caused by a pituitary problem.
Doctors will diagnose Addison's if it is found during an SST. But if they don't bother testing the ACTH they can't diagnose Secondary AI.
If you know how the body controls thyroid hormone output you'll realise that the output of cortisol is controlled in a very similar way. They are both three step processes involving the hypothalamus, the pituitary, and then the thyroid or the adrenal glands, but the hormones involved are different.
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The problem with Secondary Hypothyroidism or AI, and Tertiary Hypothyroidism or AI is that doctors dismiss such suggestions with a wave of the hand and the comment that "It's very rare". I think I've got Secondary Hypothyroidism and that was my experience when I mentioned it to a doctor.
Wow your knowledge astounds me! Thank you so much.
I do suspect I may have secondary adrenal insufficiency and you’re right, they didn’t test my ACTH levels during the short synacthen test. I did wonder how I might get one of these, is there a private option? I have been referred to a different endocrinologist and whilst I’m not expecting them to help me much, I did wonder if it’s possible to talk them into doing an ACTH test. Surely is must be available on the NHS, any idea?
If you do have Adrenal Insufficiency (AI) in any form doctors should diagnose and treat it with steroids to make up the deficit in your cortisol. Doctors "believe in" AI and are aware that people cannot repair the damage done by Addison's Disease (for example), so they treat it when they diagnose it.
However, if you have low cortisol because of general poor health then, theoretically, you might be able to repair the problem and persuade your adrenal glands to produce enough cortisol for your needs.
This problem is what patients usually call "Adrenal Fatigue" and doctors don't "believe in" it.
You can get a flavour of what this means for patients by reading the wikipedia article on Adrenal Fatigue (AF). It is very dismissive.
Suppose your Free T3 is 3.2 with a reference range of 3.1 - 6.8. Some doctors think any test with a result which is in range is absolutely fine, but you might only feel well if your Free T3 is 6.0 first thing in the morning.
You might have a 9am blood cortisol level of 200 with a reference range of 195 - 600. Many doctors will think that is fine too. But you might only feel well when your cortisol is 550 at 9am.
These beliefs about ranges are what keeps so many of us ill.
Who feels worst? I would expect it to be Person B.
Person A with hypothyroidism and optimal nutrient levels
or
Person B with hypothyroidism and low in range (but acceptable to doctors) vitamin B12 and folate?
The more conditions we stack up the worse we will feel. But if many nutrients are low then no matter how well the hypothyroidism is treated and how good the thyroid function results, the patient will still feel unwell.
On the subject of Adrenal Fatigue this website is worth browsing :
Thank you. I agree the Dr Lam website is great and I’ll re read some of those links. I used to pour over this Dr Myhill pages and I see they’ve been updated quite a bit, so thanks for that.
What is your opinion on whether DHEA or pregnenalone is best for raising cortisol? I know DHEA and presumably pregnenalone increase oestradiol and testosterone. I am very low in both of those, so hopefully taking them will help. I am currently trying DHEA again, the functional doctor said Id probably need it long term.
As low DHEA is the anti aging hormone, would it be true to say that my very low levels of DHEA could be the reason I’ve gone from looking very young for my age to rapidly aging what I think is beyond my years?
I will look at your other answers later. I need to try and get some sleep now. But thank you again, forever in debt to you!
With regards to healing the adrenals, I feel like I’ve been doing everything right for the 6 years or so when I found this forum. Ie supporting with vitamin C and I can’t remember the other one I take which was for adrenals. I don’t over do it like ever- I haven’t stayed up for New Year’s Eve in 20 years, so I am in bed asleep around 10pm (because I am shattered) and never burning the candle.
I do all the gentle exercise like yoga and gentle walking, so don’t over exert myself. But my cortisol saliva results are worse than my previous two in around 2018 and 2019 from memory. Interesting how the latest one I posted said possibly early stages of adrenal fatigue but presumably this is wrong if it’s been ongoing for years.
I’m not sure what else I can do to heal them. I have started adrenal cortex and DHEA again. But does my problem lie with the adrenals if they’re working on the short synacthen test? Is it not my pituitary that is possibly failing?
With the nhs endocrinologists I’ve seen, it’s clearly felt very black and white, you don’t have Addisons so toodle pip and on my way. I do think I probably need hydrocortisone, but am I best to ask my private doctor for that, or follow the route of DHEA, adrenal cortex and supplements to support adrenals? After 20 years of feeling like I struggle after lunch and basically can’t plan anything in an evening, I would really like to see some improvement. I haven’t tried hydrocortisone so maybe I should?
my folate is and always has been dire in the 40’s, although in range
What product(s) have you tried to raise your folate? And at what doses?
The body uses a lot of folate and it needs to be topped up regularly, either in the diet or with supplements. If it isn't used I think it gets excreted.
I don't know if you've noticed but many people seem to have low folate almost permanently. It isn't stored in the body as far as I'm aware.
People with methylation problems might have to start with low doses and then build up to a higher dose. But taking a huge dose (for anyone) to produce very high results isn't a good idea. I have never understood why doctors prescribe enormous doses of folic acid to people who are deficient or pregnant.
I am sorry, it is my ferritin which is dire. My daughter is very poorly hence my brain malfunction and delay in replying, I do apologise! All other vitamins are usually ok when tested.
Transferrin is in range - approx 26% through the range.
Ferritin is 57 (30 - 200) Approx 16% through the range.
Are you taking iron supplements at the moment? If yes, what are they, what dose are you taking, and how often do you take them. If you've already answered this, my apologies but I can't find it.
You definitely classify in those results as someone with high iron.
I can't find results for B12 or folate.
The ratio of serum iron and saturation to ferritin is not good and this can sometimes be improved with an increase in the methyl donors you have.
If you need to raise B12 then take methylcobalamin.
If you need to raise folate then take methylfolate.
If you don't need to raise B12 or folate then you can use different supplements, which can all be bought online without prescription, that raise your level of methyl donors without affecting your B12 or folate itself. They are :
You'll notice that all the supplements I've mentioned have the name "methyl" as part of their name. This indicates that they can be used as methyl donors.
I haven't done much research into DMG, TMG, or MSM so I'll have to ask you to research the benefits, side effects, and doses of these. They can all be bought on Amazon, and no doubt other sites that sell supplements. I did buy myself some TMG but it was at least 10 years ago and I can't remember how I got on with it. I think I tried MSM as well. That one contains sulphur and can be quite smelly, but that's all I remember.
I would also suggest you stop taking iron until you've seen what benefits or problems you have taking more methyl donors. The aim is to reduce your iron and saturation and increase your ferritin.
Thank you again. I stopped the iron as my blood test showed I was over range in transferrin saturation index 69% in January 2024 and serum iron 41 (9-30), Taking iron did at least finally shift my ferritin out of the 40’s. I have struggled to get my ferritin any higher even with a diet of liver pate several times a week. I am now sick of pate!
My folate was 15.9 (31-20) and my B12 559 (190-883) in June 2023. I can’t remember what dose of B12 I take without getting out of bed to check (it’s 4am) but I do recall buying that form of B12 as it’s been drummed into me on here. Does taking B12 not skew your results?
I don’t think my B12 or folate have ever been that bad, I just take B complex as advised on here. I will re read your post and all those helpful links, thank you for those.
I do recall on a previous post I think you talking about a possible gene defect when you can’t raise your ferritin, so I will try and find that information as there is clearly a problem with my ferritin.
Also, regarding DHEA or Pregnenolone, a search on the forum came up with this reply which suggests that DHEA is less likely to cause side effects than pregnenolone :
Thank you. I didn’t have side effects from either so hoping I’ll be okay. I know Dr Myhill used to recommend DHEA but now recommends Pregnenalone as its upstream of the hormones.
I understand DHEA will increase oestradial and testosterone and as all three of these are low for me, I’m hoping trying it again will help me in that department. Taking the maximum 3 sprays of Lenzetto HRT since around May 2023 for my oestrogen hasn’t raised my oestrogen enough.
I use 4 sprays of Lenzetto split 2 in the morning 2 in the evening, you need what you need and it depends how well you absorb it so I wouldn't worry about the 3 max bit.
I can't be bothered to educate them on this too! They never test my levels I do so I know that 3 squirts = 180pmol/L still have symptoms and 4 squirts = 232pmol/L happy place, interestingly there has been no change since adding DHEA
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