Very High Cortisol, what should I do? - Thyroid UK

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Very High Cortisol, what should I do?

Crazy_CatLady profile image
26 Replies

I did the 24 hour saliva test for Cortisol this week. I thought I should check it out as I don't seem able to go above a certain dose of Levo (100mcg) or D=NDT (1.5 grains), even though my blood tests seem to indicate I'm not optimally medicated. Also, over the last week I've started to suffer on and off with insomnia, waking at 3am and not being able to fall back to sleep

I just got the results back, and I'm shocked! They're so high above the normal ranges!

CORTISOL (SALIVA) WAKING *37.400 nmol/L 6.00 - 21.00

CORTISOL (SALIVA) 12:00 *92.900 nmol/L 1.50 - 7.60

CORTISOL (SALIVA) 16:00 *100.000 nmol/L 0.00 - 5.49

CORTISOL (SALIVA) BEFORE BED *6.440 nmol/L 0.00 - 1.99

Now, when I did this test, I'd suffered with a particularly bad night of insomnia the night before, I probably had about three hours of sleep and felt pretty terrible the next day at work. Would this cause my cortisol levels to be so high throughout the next day? Could this just be a temporary thing, a snap shot from a bad day? With hindsight, maybe I should have done the test when I was feeling a bit more normal on the day.

Anyway, I'm looking for advice on what to do now. Any recommendations for lowering my cortisol? I've been reading around the forum, and it looks like Holy Basil is a common supplement used by people to lower cortisol.

Is it even worth going to see my GP? Do they take much notice of these privately done tests? I've heard that they are only interested if you have Cushings or Addisons Disease, Adrenal fatigue etc is not really a thing for them. I think I'd probably rather do another test before I did see a doctor, make sure it wasn't a weird off day.

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26 Replies
humanbean profile image
humanbean

Do you have bleeding gums? If any specks of blood gets in to the saliva test it will give crazily high results, because the amount of cortisol in blood is naturally many, many times higher than the cortisol in saliva.

Do you take any prescription meds or supplements? There are a lot of things that can affect cortisol. Two lists I know of are :

stopthethyroidmadness.com/s...

rt3-adrenals.org/does_it_af...

The STTM link suggests that people give up as many of the things on the list for two weeks before testing as possible. But for some things this may not be possible. When I did cortisol testing I decided not to give up 5-HTP, which I take as an anti-depressant. I didn't think a test was worth the depression I would inevitably have developed. And besides, many anti-depressants are not safe to give up cold turkey. The same comment applies to several other things on the lists.

And of course, the final suggestion is that perhaps you do have Cushing's Disease or Cushing's Syndrome.

en.wikipedia.org/wiki/Cushi...

If you believe that is a possibility then you must see your GP and ask for testing.

Edit : When I said that a lot of things can affect cortisol and linked those lists, it isn't mentioned whether a particular thing raises or lowers cortisol. If you take any of the listed things you would have to research whether they raised or lowered cortisol.

Crazy_CatLady profile image
Crazy_CatLady in reply to humanbean

I haven't noticed any bleeding gums, although maybe a speck of unnoticeable blood could greatly affect the results. I do take sumatriptan for migraine, and I did suffer a bit last week, but I don't think I took any on the day of the test. I think I perhaps really just chose a bad day for testing, although those values are through the roof, and really don't seem right to me.

I don't have the typical symptoms for Cushing's Disease, so I would hope I don't have that. I think I'll take some holy basil for a few weeks, wait for my thyroid symptoms to recede somewhat (hopefully by stumbling across the right dose of NDT/levo combo), then test again.

Thank you for replying and your suggestions :-)

humanbean profile image
humanbean in reply to Crazy_CatLady

I use Holy Basil for high cortisol - although mine was a tiny fraction of what yours is - and I've found this one works for me :

healthmonthly.co.uk/swanson...

The official dose on the bottle is 2 capsules twice a day. When I first started I found that had no effect. I briefly spent time on 2 capsules 4 times a day but felt that was too much, then reduced to 2 capsules 3 times a day. I stayed on that dose for quite a few weeks, until I again felt I was on too much. Then I reduced to 2 capsules, twice a day, then finally reduced to 2.

When I ran out I tried going without for a while but rapidly found I was reverting to "normal for me". So I'm back to taking 2 capsules twice a day again. I need to take them early evening then at bedtime in order to a) fall asleep, and b) hopefully stay asleep, but (b) doesn't always work.

Sometimes I can't get to sleep even with the Holy Basil so I have bought some 3mg melatonin which I've cut into halves or thirds, and I take one piece if I need it.

There are lots of other supplements you can try for high cortisol if the Holy Basil doesn't work for you.

elaine2447 profile image
elaine2447 in reply to humanbean

I was thinking of doing the same with the HB and started taking a capsule with my dinner in the evening. I got some organic ones but it says on the bottle to take with meals. I just wondered if you take two early evening and the two before you go to bed does it upset your stomach at all.

humanbean profile image
humanbean in reply to elaine2447

No, I don't get an upset stomach. But I have been, intermittently, trying to improve my gut for years, and compared to how it was a few years ago there has been a huge improvement.

Perhaps if I'd tried Holy Basil a few years ago I wouldn't have tolerated it.

I did try ashwaghanda some years ago and it made me feel terribly sick, and so did milk thistle. Perhaps I should try them again, and see what happens now.

elaine2447 profile image
elaine2447 in reply to humanbean

Having seen ashwagandha is one of the nightshade family, it has put me off a bit as I am desperately trying to reduce my antibodies. Have you tried relora and this jujube (forgotten the proper name) that many people take for high cortisol.

humanbean profile image
humanbean in reply to elaine2447

No, I've heard of them, but never tried them. HB is working for me, so I don't want to buy something else until or unless I have to.

QUE6T-33 profile image
QUE6T-33 in reply to humanbean

Hi Humanbean - if you stop taking HB, does your Cortisol elevate again !

humanbean profile image
humanbean in reply to QUE6T-33

I start feeling anxious, getting jitters and have severe insomnia again, so yes, I think it does.

I've decided I really need to get a proper test done again - not looking forward to coming off HB for two weeks first though, so I will probably procrastinate for ever.

QUE6T-33 profile image
QUE6T-33 in reply to humanbean

Odd isn't it - would have thought if HB had a stress reducing affect, that the benefit of lowering Cortisol (as believe it does) would last ! Well, at least short term. Yes, you you should have a test I guess (more money). Hope you get a better result.

humanbean profile image
humanbean in reply to QUE6T-33

Unfortunately, with hindsight, I think I've had high cortisol since childhood. It has become "normal" for me. So, when I stop supplementing to reduce my cortisol, it increases straight back to "normal for me" again.

QUE6T-33 profile image
QUE6T-33 in reply to humanbean

Yep, get that. Obviously tests have confirmed high cortisol ?

humanbean profile image
humanbean in reply to QUE6T-33

Yes. But I need to re-test.

QUE6T-33 profile image
QUE6T-33 in reply to humanbean

What symptoms did you experience when taking too large a dose of Holy Basil?

humanbean profile image
humanbean in reply to QUE6T-33

I only took too high a dose for about a week, and this happened about 7 years ago so I can't remember the details now. But I vaguely remember feeling more lethargic than usual, had headaches, and felt rather sick.

Simba1992 profile image
Simba1992

Go on Ray Peats diet😊

elaine2447 profile image
elaine2447

I only just saw your post. Oh dear you sound a real worry wart like me. I was convincing myself that I might have Cushings but then I realised that was not possible. I have a friend who had that and had to have an adrenal gland removed. She was going through a very rough time with a dying sister in law and coping with the two little girls so ignored her symptoms for years. She had the typical puffy face and lots of other symptoms including the "buffalo hump" so try and put that out of your mind.

Sometimes I don't sleep all night and I am so anxious that I find I am even worse if I know I am doing a saliva test in the morning. My last set of results done with Regenerus was completely opposite and low, low, low high compared with Medichecks six weeks previously very high high high and very high.

I personally wouldn't take any private tests to the GP, not if he is like my surgery, they tend to scoff at them but they have no idea about adrenals, thyroid or parathyroid come to that. Humanbean posted up some good links on my last post which might help you.

healthunlocked.com/thyroidu...

Crazy_CatLady profile image
Crazy_CatLady

I've just noticed these new replies :-) I tried holy basil for a week or two, and it seemed to cause my stomach to produce excessive acid. I've got my NDT dose sorted a bit better now, so I think that has contributed to me generally feeling better and sleeping well without the need for holy basil now. I haven't done another cortisol test, not sure I want to after the crazy high results of the last one!

QUE6T-33 profile image
QUE6T-33 in reply to Crazy_CatLady

Hi Crazy Catlady - Which laboratory did you use for cortisol test ?

Crazy_CatLady profile image
Crazy_CatLady in reply to QUE6T-33

It was Medichecks

QUE6T-33 profile image
QUE6T-33

Yes, thought it might be. They have just done mine - Urine Cortisol & that has come back very high too.

Crazy_CatLady profile image
Crazy_CatLady in reply to QUE6T-33

Was it ridiculously high, like mine?

QUE6T-33 profile image
QUE6T-33 in reply to Crazy_CatLady

Can't directly compare as yours was Saliva I believe & mine urine, but, yes, crazy high !

QUE6T-33 profile image
QUE6T-33

Crazy catlady, if you do pluck up courage to do another Cortisol Test, especially if use a different lab, grateful to hear what results are.

Crazy_CatLady profile image
Crazy_CatLady in reply to QUE6T-33

Will do, although I have no plans to at he moment- I've been feeling ok and sleeping ok :-)

QUE6T-33 profile image
QUE6T-33 in reply to Crazy_CatLady

Good to hear. Keep well

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