Help needed interpreting saliva cortisol results - Thyroid UK

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Help needed interpreting saliva cortisol results

J972 profile image
J972
26 Replies

Hi everyone,

I’d really appreciate your help interpreting my recent cortisol results. I posted them last month but I’m still unsure about what to do in terms of addressing.

I’m still incredibly symptomatic and can tick off many of the symptoms listed on the link at the foot of this post. I would also add that I’m extremely sensitive to light - feeling pretty ridiculous wearing sunglasses on overcast, November days tbh - and extremely sensitive to odours. In addition to this, I’m finding it difficult to tolerate levothyroxine- can’t get past 62.5mcg and recent bloods suggest that I’m a poor converter from T4 to T3.

healthunlocked.com/thyroidu...

I’ve started to incorporate T3, starting v low and v slow and am currently on 9mcg. I feel no improvement.

At night in bed I feel jittery and always wake at around 2am, finding it difficult to drop off again. Getting out of bed in the mornings is a huge struggle.

humanbean I really hope that you don’t mind me tagging you here. I’ve trawled through historical posts on the forum and the help you’ve provided to folk in terms of interpreting their results, and suggestions for next steps, has impressed me.

Thanks for reading 🙏

Symptoms of low cortisol;

stopthethyroidmadness.com/a...

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J972
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26 Replies
Peril1504 profile image
Peril1504

I’m no expert and just learning things myself but the sensitivity to light sparked a memory in me. I used to work with some sales reps who shovelled down vitamins and they were the same, needing sunglasses even on dull days and after investigation, it was found they were overdosing massively on vitamin A. Once they stopped it they were fine x

J972 profile image
J972 in reply to Peril1504

Hi thanks Peril, interesting story, I don’t think I’ve been ingesting an excess of Vitamin A…

I was really hoping to have had more responses to my post, I’m genuinely struggling, so thank you for taking the time to reply.

Not really sure what to do next tbh.

Take care x

TiggerMe profile image
TiggerMe

If you are looking to support your adrenals, having covered the basics of Vit C and salt, I'd suggest you take a look at adrenal cortex supplements 🤗

J972 profile image
J972 in reply to TiggerMe

Thanks Eeyore.

That’s the thing, I’m not sure whether my results suggest that adrenal cortex supplements would help or whether I should follow things up with my GP. I simply don’t know.

In the meantime I’ve started making adrenal cocktails.

🙏

TiggerMe profile image
TiggerMe in reply to J972

Adrenal cocktails are a great addition, you'd be wasting your breathe talking to your GP I'm afraid, it would likely just stress your adrenals even more 🙄

See how you do with the cocktails and have a read about adrenal cortex as they are the next level of support you can give your adrenals 🤗

J972 profile image
J972 in reply to TiggerMe

I know exactly what you mean about speaking to my GP, sadly. I have an appointment next week anyway, I’ll ask about getting a serum cortisol blood test.

Part of the reason for my equivocation is that some quarters recommended hydrocortisone as the first port of call with adrenal insufficiency. I’m reluctant to go down that route unless there’s a demonstrable need.

Which is why I was seeking detailed interpretation of my results.

Do you have any experience of taking pregnenalone to support DHEA? I’ve tried to read widely on the subject, I know Myhill is an advocate, whilst others say that it’s perhaps not the best course of action because you can’t be sure which hormone it will convert to. I’m currently not on HRT, for info.

J9

TiggerMe profile image
TiggerMe in reply to J972

I would think hydrocortisone is a bit heavy handed as your levels aren't so bad.... many say that we should treat the adrenals before thyroid but as most of us just get Levo thrust at us with little information 🤷‍♀️

I started on glandular and have swapped to hydrocortisone for a few months along with DHEA 15mg just to see if I can give my adrenals a lift as they really suffered when my Endo insisted on a drop in T3/T4 dose to start with 😕 I then plan to drop back to glandulars.

I like Dr Myhill's attitude but I opted for smallest dose I could find of DHEA rather than Pregnenalone.... I am on HRT and since adding DHEA I have lowered my estrogen dose... yet to retest levels as I'd need to drop the cortisone first 🙃

J972 profile image
J972

Really interesting, thanks Eeyore. My hunch too is that my levels aren’t particularly dire, so I’m grateful to you for confirming that.

Sorry for the bombardment of questions, but, did you start on glandulars following a saliva test? Which glandular did you opt for?

J9

TiggerMe profile image
TiggerMe in reply to J972

Sorry only just spotted this, it wasn't aimed at me so no notification 🙃

I've tried a mixture as they offer differing doses, Adrenavive, Pure Encapsulations, Klaire Labs... yes after a saliva test... my results were much like yours... I swapped to a little hydrocortisone 5mg as it was a cheaper option rather than taking lots of glandular which being bovine tends to give me 💨💨😏

This was my post... an excellent graph from Radd... healthunlocked.com/thyroidu...

I'd done another saliva test since this January one and levels had dropped further due to first NHS Endo appt and reduced T3/4 😠 since increased, but it put me back to bed for February, so this is when I swapped to HC and DHEA

TiggerMe profile image
TiggerMe in reply to J972

Couldn't add it to previous reply...

July 2023
J972 profile image
J972 in reply to TiggerMe

Thanks for spotting and responding to my mis-fired reply! 🫣

All really helpful info, thanks. I’ll check out/search for posts on those glandulars you mention.

I’m interested in the fact that you’re taking hydrocortisone. This might be impossible to quantity, but, do you find it more effective than the various glandulars you took? And are you planning to phase it out at some point, once your adrenals are in better nick? I’ve seen so much about the long-term (negative) effects of taking hydrocortisone, it’s tricky to know what to do for the best.

Really frustrating to see what happened with the Endo in February, I trust you’re feeling a bit better now?

J9 🙏

TiggerMe profile image
TiggerMe in reply to J972

A necessary blip it would seem to get the Endo onside 🙄 I've been ok since early May and feeling really pretty good since around July ( it always takes longer to crawl back up than to slide down ☹️) certainly the HC gave a quick uplift, I'm not sure how much glandular you would need to compare to 5mg of HC it has a fair bit more poke to it... They talk about building up to 6-8 tablets a day of glandular.... £££!

I take my T3/4 between 4-6am which should help with the morning cortisol and 5mg HC mid morning to stop the slump, this has allowed me to walk or row so I'm reaping the benefits of more activity on body and mind, thinking I'd give it 6 months and review, I'm now thinking I'll stick with it till spring... I occasionally take an extra 5mg at lunch if I have to up my game in the afternoon.

I'm thinking supporting longer at a lower dose is a more gentle approach 🤷‍♀️ like you say scary things steroids but I'm viewing it much like HRT I'm only topping up what's missing until my adrenals hopefully are restored 🙃 and the marvellous thing is I function acceptably well for the first time in 4 years🚣‍♀️

  greygoose used them for a few year and found them helpful and without issue... though the details have been lost in the mists of time she is still going strong 😉 so I took the plunge

greygoose profile image
greygoose in reply to TiggerMe

What did greygoose use? I took HC for a couple of years, that's all. And it helped enormously.

J972 profile image
J972 in reply to greygoose

Cheers, greygoose.

J972 profile image
J972 in reply to TiggerMe

So heartening to hear that you’ve improved and what an absolute bonus that you’ve been able to resume some of your favourite activities. My aim is to be able to do the same. I feel bereft and directionless of a Saturday after c.35 years of playing hockey every weekend.

It’s no exaggeration to say that my chances of getting back some semblance of my old life back would be zilch if it wasn’t for the generosity and wisdom of this forum. Thank you 🙏

TiggerMe profile image
TiggerMe in reply to J972

🤗 this forum saved me that's for sure... Have you checked your sex hormone levels?

J972 profile image
J972 in reply to TiggerMe

I was going to mention that, once/if I get my adrenals & thyroid sorted, I’ll look at reintroducing HRT. I’ve gone through 5 different regimes and became known as a pro-HRT advocate/zealot when, earlier this year, it became apparent that despite 3-4 years of pursuing HRT I still felt 100% 💩 . In fact, I felt much worse than previously. It was at that point that the proverbial penny dropped and all those ‘borderline’ and ‘sub-clinical’ thyroid results needed my full attention. Which led me here.

I found every progesterone I took completely ghastly. The worst of the bunch was utrogestan, the only bio-identical and therefore most highly regarded. It sent me dangerously loopy. I now wonder whether this was because of my underlying thyroid and adrenal issues. I should also say that I went through menopause early - 45 - but now I also wonder whether that was due to untreated, under active thyroid. I even tried testosterone (from Superdrug), that gave me no relief (& made me jittery, even in small doses).

TiggerMe profile image
TiggerMe in reply to J972

It's the hardest bit trying to balance all of our hormones, I started as we all do on the basics with both and have tweaked both over the last year along with the cortisol issue... then as I've started doing more I've needed to tweak all again and not all upwards 😵

T3 and testosterone were big players and a decent amount of estrogen, progesterone can be a funny one for some, I found Utrogestan vaginally got me over that hump.... but I'm levelling out it would seem as some systems are benefitting from the new regime 😏

It seems it's much like following a recipe without the method, instructions or quantities! 😅

J972 profile image
J972 in reply to TiggerMe

Re: utrogestan, tried all methods of delivery too….😬

Yes, it’s a minefield but, fortunately we no longer have to rely solely on (and sorry to be predictable), so-called experts and can share our lived experiences, as well as researching widely. The scales have certainly fallen from my 👁👁!

J972 profile image
J972 in reply to TiggerMe

And, yes, I’ve recently used Randox to check my sex hormones. Oestrogen was low, progesterone high, prolactin high, testosterone low in range. I’ve got another one if those tests and plan to use it in a couple of months because when I previously did it I hadn’t long been off HRT. Plus I’m interested to see what effects T4 & T3 are having on the results, particularly the elevated prolactin.

TiggerMe profile image
TiggerMe in reply to J972

So that makes sense of the reaction to progesterone, your body telling you it wasn't needed and more of the other two would help... if only GP's were more on it eh

J972 profile image
J972 in reply to TiggerMe

Exactly! x

humanbean profile image
humanbean

I'm going to use the standard reference range rather than the optimal range given because I don't know how the optimal results were arrived at.

Your results:

Sample 1) 15 (7 - 30) --- 35% of the way through the range

Sample 2) 3.7 (2.1 - 14) --- 13% of the way through the range

Sample 3) 1.1 (1.5 - 8) --- Under range

Sample 4) 1.1 (0.33 - 7) --- 11.5% of the way through the range

...

Optimal results for saliva cortisol are given at this link (see Example 1) :

rt3-adrenals.org/cortisol_t...

• Morning at the top of the range --- 30 with your range

• Noon approximately 75% of the range --- 11.025 with your range

• Evening close to 50% of the range --- 4.75 with your range

• Nighttime at the bottom of the range - 0.33 with your range

...

We need to compare your results to the optimal results and see what comes out of it.

Sample 1 : Optimal = 30 --- Yours = 15 --- You produce 50% of the cortisol you should.

Sample 2 : Optimal = 11.025 -- Yours = 3.7--- You produce 34% of the cortisol you should.

Sample 3 : Optimal = 4.75 --- Yours = 1.1 --- You produce 23% of the cortisol you should.

Sample 4 : Optimal = 0.33 --- Yours = 1.1 --- You produce 333% of the cortisol you should.

Totals : Optimal = 46.33 --- Yours = 20.9 --- You produce 45% of the cortisol you should.

DHEA 64 (106 - 300) Under range

...

Please note if you research DHEA that supplements are not sold in the UK and cannot be imported from elsewhere. DHEA is on the controlled drugs list in the UK because it has been classified as an anabolic steroid. My knowledge of biochemistry and steroids is practically non-existent so I don't know if this is justified or not. Personally, I suspect it isn't. DHEA is available as an over-the-counter supplement in the USA, while the UK has banned it. And DHEA is one of the most abundant hormones in the body.

You might come across DHEA-S when researching DHEA. DHEA and DHEA-S are not the same substance.

en.wikipedia.org/wiki/Dehyd...

en.wikipedia.org/wiki/Dehyd...

You might come across the theory of "pregnenolone steal" when researching DHEA and cortisol. This theory is losing ground but there are still new articles mentioning it being produced.

zrtlab.com/blog/archive/rea...

DHEA decreases with age.

Just as an observation... I have noticed that low in range or under range DHEA often appears in conjunction with deteriorating cortisol.

I think, at the moment, that you are suffering from Adrenal Fatigue. Be aware that you should never mention adrenal fatigue to a doctor. Many doctors simply don't believe in it and think this condition is pseudoscience, and only believe in adrenal insufficiency, which you definitely don't have.

To explain the difference between adrenal fatigue and adrenal insufficiency (all numbers are fictional)

Adrenal fatigue : Suppose cortisol measured in the blood at 9am gives a result of 200 with a reference range of 180 - 500. This is extremely low in range, but doctors think this is absolutely fine because the result is in range. And since anything in range is considered to be "normal", the patient is fine and complaining about nothing. They are often assumed to be depressed and offered anti-depressants. But this condition of low cortisol in the blood is often referred to as adrenal fatigue. The adrenals do function, and with the proper care the adrenals can be made healthier. If that can be achieved the cortisol levels will improve.

Adrenal insufficiency : Suppose cortisol measured in the blood at 9am gives a result of 100 with a reference range of 180 - 500. This is well below range. This could be caused by autoimmune destruction of the adrenals. No amount of optimal nutrients or optimal anything else is going to regrow or repair the adrenals. Cortisol levels will drop and drop and drop until the patient has levels which are so low they could cause an adrenal crisis and possible death. Surprise, surprise, doctors believe in this.

en.wikipedia.org/wiki/Adren...

en.wikipedia.org/wiki/Adren...

With adrenal fatigue, patients have to do what they can to improve the health of their adrenal glands. Optimal results for saliva cortisol are given earlier in this reply.

Note blood cortisol and saliva cortisol are not measuring the same thing. Blood levels can be normal while saliva cortisol could be low. Other combinations of results are possible.

I'll post this, so I don't lose it. I'll write more later.

J972 profile image
J972 in reply to humanbean

Thank you humanbean, you’ve been very generous with both your time and knowledge. I’m very grateful.

There’s a lot to digest! I wonder why my cortisol appears elevated at the end of the day? I certainly don’t feel any increase in energy levels of an evening, as occasionally reported by others. Nor do I have any problem dropping off to sleep; the problem always comes in the early hours.

Thanks for the overview of DHEA, I understand what you are saying. I’m considering trialling pregnenalone, as per Dr Myhill’s website. I’ve started making adrenal cocktails. Do you think I’d benefit from adrenal cortex extract? I’ve looked into Adrenavive II and have read about others’ experiences of that.

Thanks again 🙏

humanbean profile image
humanbean in reply to J972

Optimal for the last cortisol of the day is described in the link I gave above as :

Nighttime at the bottom of the range

For the range you've been given (0.33 - 7) the bottom of the range is 0.33, and your actual result is 1.1. Almost every set of results I've seen for saliva cortisol has a last test result which looks high compared to the optimal levels suggested. I wouldn't worry about it. The actual amounts involved for test 4 are absolutely tiny.

Optimal for the first result is roughly 90 times higher than the optimal for the fourth result. It is quite common for some companies that do saliva tests to give ranges that include zero at the bottom for the last test. This is absurd, in my opinion, because I don't think that having zero cortisol would ever be healthy, at any time of the day or night. The fact that zero is included in ranges from some companies doing saliva cortisol tests suggests to me that it is difficult to measure accurately. So, I wouldn't worry much about that last one.

...

Some years ago I replied to another member about her cortisol and her results are not wildly different to yours. I threw everything I could think of into my replies, and the thread might be helpful for you :

healthunlocked.com/thyroidu...

Since the thread is now old, there might be some broken links. I hope the thread is helpful to you too.

J972 profile image
J972 in reply to humanbean

What you say about the nighttime range makes sense, thanks for addressing that.

I’ve previously ‘saved’ the post you responded to 3 years ago, it’s a good ‘un 😊 Thanks for directing me towards it, I’ll go through it with renewed interest.

Huge thanks. 🙌🏼

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