Cortisol questions: As I've just done my cortisol... - Thyroid UK

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Cortisol questions

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As I've just done my cortisol tests I've been pondering things.

1) How quickly do cortisol levels change? I know they change throughout the day but do they change week to week? Could my cortisol, for example, come back ok this week but if I do it next week the results would be dreadful?

2) if my results come back low or high (but not Addison's or Cushing's) is there anything can be done about it?

Thanks!

🧹🐈‍⬛

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28 Replies
ColdBanana profile image
ColdBanana

I'm waiting for my Cortisol test kit and those thoughts crossed my mind too. If I had to guess, as long as your life style hasn't changed significantly since your test, and your day to day stress levels remain the same, they should be relevant for awhile? I hope so anyway. My AM cortisol was on the lower end of the reference range the last time I had it tested, so I figured I'd try again.

humanbean profile image
humanbean

How quickly do cortisol levels change?

Theoretically, cortisol could change within seconds. It is one of the stress hormones. So, in a healthy person their cortisol could be normal, then they might be late waking up and might get stressed about catching their bus to work. Then they just manage to catch their bus and get to work on time after all. Their stress levels go down again, and within a few minutes of sitting on the bus their stress levels will go down to normal again.

They might have a stressful afternoon because they've been given a task which will tax them and cortisol will rise again.

While all this is going on, someone might burst a balloon behind you, and cortisol will rise dramatically then drop again just as quickly once you find out what the noise was.

I have read very little on the subject of adrenaline (another stress hormone) in relation to cortisol, mainly because I've never had my adrenaline tested, nor do I know how one could get it tested.

I've done a very quick search and found this link that explains the differences in what cortisol and adrenaline do. I'm not making any claims it is a good link.

healthfully.com/adrenaline-...

...

One of my pet peeves is that the medical profession has a woefully inadequate idea of what stress is, and they usually blame a mental health problem that is the fault of the patient (particularly if patient is female). But this is a stupid idea - or at least an unnecessarily very restricted idea. There is far more to stress than that, in my opinion.

1) Being in pain increases cortisol. If pain or the cause of the pain isn't treated within a reasonable time (whatever that is) then cortisol could end up staying high permanently.

2) Being bullied or abused - at home, at school, at work - will raise cortisol. Giving the sufferer an anti-depressant or a beta blocker doesn't stop the bullying or the abuse so the raised cortisol will probably become permanent.

3) When the body is short of thyroid hormones it will replace them with cortisol - and it is a poor substitute but it will help to keep patients alive. Being low in thyroid hormones is stressful.

4) Low levels of one or more of the vitamins or minerals or nutrients makes life harder, causes the body to work harder to achieve the same goal, and could well increase cortisol and/or adrenaline.

5) During World War 2 there were very high levels of stress for entire countries for years. I don't know if statistics were maintained of heart attack and strokes during the war but I suspect they weren't kept very reliably if they were kept at all. After the war ended rates of heart attacks and strokes were at epidemic rates in many countries. If everyone has developed a high "normal" level of cortisol as a result of the stress of war, then this isn't surprising. Of course, doctors looked at people's diets and blamed people for eating the wrong food, and ignored the biggest elephant in the room (stress of war) as a possible cause.

The idea that being stressed is caused by the patient's mental health is grossly unfair to the sufferer, and blaming the patient does nothing to reduce the stress.

The other thing of course, is that if cortisol stays high for a very long time, then even when the patient is relaxed their cortisol might remain high and this becomes the patient's new normal level.

...

Another feature of high cortisol is that people's adrenal glands can't necessarily maintain high levels of cortisol production permanently.

Anything which reduces the overall health of the body (e.g. low thyroid hormones, low nutrients) could also make the body less efficient at producing cortisol.

So sick people might end up with low cortisol. Do people with low or high cortisol produce more adrenaline? Less adrenaline? I don't know. But I would guess they might be related somehow.

...

Going back to your original questions...

How quickly do cortisol levels change?

Once someone starts changing their thyroid hormone levels and their mineral/vitamin levels it will change their cortisol levels too. I would suggest making a start on fixing thyroid hormones and nutrients before testing cortisol. But the symptoms of low cortisol and high cortisol have a lot of overlap so I would also suggest never just guessing whether cortisol is high or low based on symptoms. Always test, at least once.

[When I was new to thyroid and nutrients over ten years ago I came a cropper on this. I guessed my cortisol was low when in fact it was very high, but not high enough to count as Cushing's. Until I realised I was going wrong I had a very unpleasant few weeks.]

The best test is a saliva test (although most doctors would disagree). If I put it into terms people are familiar with from thyroid treatment...

Cortisol is moved around the body via the blood stream, attached to transport proteins

Levels of cortisol in blood can be thought of as testing "Total Cortisol" i.e. the cortisol is still attached to transport proteins and is not yet active and won't be of use in the cells - or can't get into the cells(?). (But doctors don't use that terminology either.) So Total Cortisol is "Inactive".

Levels of cortisol in saliva can be thought of as testing "Free Cortisol" i.e. the cortisol has been detached from transport proteins and is available for use in the cells without further processing (although doctors don't use that terminology). So Free Cortisol is "Active".

Just like testing Free T3 and Total T3, Free Cortisol is a more useful test than Total Cortisol (although doctors would disagree).

Instead of using the terms "Total" and "Free" for cortisol doctors use "Bound" and "Unbound" for cortisol. Medicine / biochemistry is not consistent in its naming conventions.

Just like Free T3 and Total T3, Total or Bound Cortisol can be low, normal or high while Free Or Unbound Cortisol is low, normal or high in any combination.

...

Regarding the treatment of low cortisol (but not so low it could be Hypocortisolism e.g. Addison's Disease which are serious and left untreated are life threatening) you might find this link of interest. I covered everything I could think of at the time - some links might be broken because it is an old thread...

healthunlocked.com/thyroidu...

Continued in next reply...

humanbean profile image
humanbean in reply tohumanbean

One member has been diagnosed with Addison's directly as a result of doing a saliva test for cortisol :

healthunlocked.com/thyroidu...

...

High cortisol can be stubborn. There are various possible OTC treatments.

1) Phosphatidyl Serine (PS). Expensive, but works for many people. Can't be taken long term.

2) Phosphorylated Serine - biochemically related to PS. Expensive, but works for many people. Sold as a supplement called Seriphos. I don't have proof of this, and I could easily be wrong, but I think that Seriphos works more quickly than PS. Can't be taken long term.

3) An Adaptogen - there are many to choose from, and trial and error is usually required to find what can be tolerated and what works. They work more slowly than PS and Seriphos but can be taken much longer term. Some of them are much cheaper than PS or Seriphos.

I wrote a thread about adaptogens and asked for people's experience of them a few years ago.

healthunlocked.com/thyroidu...

Good luck.

in reply tohumanbean

I'll have to read these a few more times to process it fully!

Ah, humanbean . You're an absolute gem. 🤗

I've finally caved and got cortisol tested because after almost 3 years I've yet to find my stable dose and I want to rule out (or in!) a broader issue.

I fear there may be something amuck with my adrenals and/or cortisol. At 37 I've yet to have a single year without a significant stress or trauma there has always been something. Some more distressing than others but always something.

I also had a close maternal relative who died from adrenal cancer; unrelated but it still makes me wonder if we have a faulty endocrine gene somewhere in our family.

humanbean profile image
humanbean in reply to

You're welcome. :)

I have similar questions about my family - not in relation to adrenals but in relation to iron absorption. Seven of us have had repeated and almost permanent problems with iron and anaemia and I think that it is probably genetic.

in reply tohumanbean

It's interesting, isn't it? My mum and maternal grandmother both had hormonal breast cancer too so it looks suspiciously like we've got dodgy endocrine and immune systems.

I'd like to think so decent genes got passed down too but as yet I'm not sure what they are. 😂

Wua13262348 profile image
Wua13262348 in reply to

I have a reason for asking you this. Did you post that you are 6 feet tall? Are you hypermobile? If the answer to both questions is yes, I'll explain the significance.

in reply toWua13262348

6'1"! Not hypermobile as far as I can tell but my kids are.

helvella profile image
helvellaAdministrator in reply to

You might find it worth having a look here:

Jessica Eccles - Hypermobilty/Ehlers-Danlos

helvella.blogspot.com/p/jes...

Wua13262348 profile image
Wua13262348 in reply to

Ah! Google "Walker Murdoch Thumb Sign" and "Steinberg Wrist Sign". Can you or your children do them? Do you have very long legs and arms? I can change a king size duvet cover, and hold both opposing corners to shake it out. Bet you can too.

I think you and I are in the same boat. Your height was the give away for me. I'm 5 feet 8 and a half", but at 65 years old , for someone of my generation , considered very tall.

I have been ill with a diagnosis of CFS/M.E. since 1987. In 2013, convinced I had Marfans Syndrome, as opposed to Ehlers Danlos Hypermobility type, I was referred to NHS Genetics, via Rheumatology. NHS genetics didn't blood test me for Marfans and didn't think I had it from examining the little scar tissue I have . They said I didn't have flat feet, when I actually do. My feet do not look visually flat. I have an arch. She and the rheumatologist are ignorant of the fact that it is common for hypermobile people to have flexible flat feet. They look normal, but the arches collapse when walking, resulting in flat feet. A specialist in orthotics/ biomechanical issues would identify this. Flat foot deformities are often present with "too many toe signs". Google this, and see if you have it. They also said I wasn't positive for "Walker-Murdoch Thumb Sign" and Steinberg Wrist Sign", when I am positive , and have both. I had a measurement done from an x ray of my hands, and my reading used to be accepted as a marker for Marfans Syndrome. The goal posts now are more extreme now than my reading. A highly arched foot , pes cavus, is sometimes seen as opposed to pes planus .(flat feet)

Last year, a leading expert said I most likely have Ehlers-Danlos Hypermobility type, the only one of the 13 EDS types that there is no genetic test for. Marfans and EDS will overlap, and can present in a very similar way. There is, however, a genetic test for Marfans.

I am hypothyroid and my blood readings are consistent with Central Hypothyroidism. I only started Levo 8/3/22. Because I have lots of eye problems with it, including swelling under the eyes , I started supplementing selenium 1/8/22 at 200mcg daily. As brazil nuts are mega high in selenium , and they are one of my food intolerances, I was suspicious I may have some kind of problem re. selenium. After 120 tablets my selenium levels were 441.18% through the range. I stopped selenium 1/12/22 amd retested 20/3/23. Unsupplemented, it is 142.86% through the range. I googled for the cause of up-regulated selenium to find that Dr.Lam, an adrenal specialist and Izabella Wentz, both state that a CBS mutation up-regulates selenium. I had genetic testing done privately in 2021, and there were supplementary pages to the testing which I wasn't given access to. I e-mailed the genetics lab a couple of months ago and asked if the supplementary pages had shown a benign CBS mutation. It turns out that I do have a CBS mutation, considered benign. It is benign in the sense that it is not considered that I have the disease associated with it, which is homocysteinuria. I have a homozygous (both parents) CBS mutation, one of the most common, present in 27.6% of the population. It is one of the most researched, but the gene was only fully cloned in 1998. It up -regulates selenium, among lots of other things, like giving you a leaky gut and an inability to absorb nutrients from food. You cannot properly process proteins. IT CAUSES HYPOTHYROIDISM. You will likely have problems with folate and Vitamin B12. VITAMIN B6 is of particular importance, among other things like betaine and carnitine etc.

MOST IMPORTANTLY, a CBS MUTATION and MARFANS SYNDROME, are so similar that only genetic testing can differentiate between the two. I was a hair's breadth away from cracking what was wrong with me in 2013, when I thought I had Marfans Syndrome. I had never heard of a CBS mutation and that it presents in an all but identical way to a CBS mutation which causes hypothyroidism, but am batting my head off a brick wall to get both the hypo and the CBS mutation taken seriously.

I have an amino acid blood test in a lab in Germany at the moment, which may give me more proof and ammunition to pursue my situation.

Google, DR.LAM, adrenal specialist,CBS mutation for info.

I believe that you too, have hypothyroidism , caused by either Marfans Syndrome or a CBS mutation. The Ancestry.com or 23andme test ,where you then run your raw data through a different website ,would tell you if you have a CBS mutation, according to Izabella Wentz. I think Ancestry is more likely to list it for UK residents.

It would be worthwhile for all hypermobile forum members who have run their raw data from Ancestry.com to check their CBS status.

I read back a lot of your posts, and I think you have, or have had , high antibodies. I have not tested positive for either TPO or TGAB antibodies. I have high , over range selenium and selenium is supposed to deter or discourage said antibodies. I wonder, then, if you do not have up-regulated selenium, and because of this, may have Marfans rather than a CBS mutation.

If you google Marfans you can judge whether you think it likely that you have it or not.

It is very difficult to get a diagnosis for it.

As far as cortisol goes, I was tested by the NHS at 9a.m. for cortisol which was significantly over range. Five minutes later, I was back in bed and out like a light for 4 hours. Without testing cortisol, I know that I have a "flipped" cortisol rhythm. I have been a night owl my whole life. I sleep properly from about 7a.m. onwards. If I rise at 9a.m. I can't function.

Hope this information is useful for you. It has taken me 36 years to find this out.

radd profile image
radd

Witchinghour,

Eliminating disease based adrenal issues such as Addisons, cortisol levels are always variable but large changes in base levels take years to manifest as result from signalling changes in the HPA axis. Because cortisol responds to stresses, even exercising (for example) will make a difference as is released to mobilise more glucose for fuel. Cortisol also changes into inactive metabolites that can switch back and forth as a part of the equilibrium balancing process. 

A saliva test taken over 24 hours considers the amount available for use at certain times which as long as nothing hugely stressful happens in your life since (such as a death or divorce), your base time levels and circadian patterns will remain roughly identical. 

Both levels high or low cortisol levels can be manipulated to improve by factors such as improving effectiveness of thyroid meds, possible lifestyle changes and supplementing adaptogens that aim to re-normalise the HPA axis. Different adaptogens generally lean one way or the other but also have different effects on different people so sometimes it’s a case of trying out several. 

in reply toradd

Thanks Radd.

With a bit of luck my cortisol will come back 'optimal' and I won't need to refer back to this thread...!! The universe has to come good for me at some point... Let's hope this is it! :D

Ajva profile image
Ajva

where did you get your cortisol kit from? I really need to get one. Thank you

in reply toAjva

I got mine from regenerus. Was £96 all in, I think.

Ajva profile image
Ajva

that is great thank you so much. Have been looking for a saliva one online for a while as medichecks stopped theirs

BreatheHelen profile image
BreatheHelen in reply toAjva

I've just received a medichecks cortisol saliva test. I think it only does a one time total dhea though. I'd forgotten about the regenerus test which iirc also measures dhea four times through the day.

Shellian profile image
Shellian

Hi Witchinghour, I recommend reading the book, Adrenal Fatigue the 21st Stress Syndrome by James L Wilson. Its available on Amazon but expensive on there, cheaper from other sellers.

I bought this book after being diagnosed with low cortisol. It wasn't low enough to be Addisons so would not have been treated on NHS. I followed the advice in the book and still do, to become healthier. To get thyroid meds working properly it is essential to have all vitamins and minerals at optimum levels and to improve cortisol levels first. Good luck.

in reply toShellian

I will add it to the list. Thank you. My concentration isn't great at the moment but I persevere!

radd profile image
radd in reply toShellian

Shellian,

I have mentioned this book many times as t'was my bible when younger for many years. In fact I still dip in and out and feel it was well ahead of it's time 😊

Shellian profile image
Shellian in reply toradd

I dip into it all the time too. Especially to get back on track after a virus or a stressful time.

radd profile image
radd in reply toShellian

First published 2001 😊

BB001 profile image
BB001

You might find the information in here useful. I searched for cortisol on paulrobinsonthyroid.com and it gave these resultspaulrobinsonthyroid.com/?s=...

HotelHurricaine profile image
HotelHurricaine

I have a saliva test kit waiting to be done.

I was wondering if anyone here has tried body based interventions like meditation, Yin Yoga or Breathwork to reduce cortisol / andrenal fatigue? I understand cognitive / thought based interventions might help too.

Just wondering if medication / supplements are the only way or whether these methods might be helpful for some.

Hhhhhhh18 profile image
Hhhhhhh18

what are your symptoms? My cortisol was checked for my fasting bloodwork I do not take my cortisol or fludrocortisone until after. My cortisol reads <0.05 when I was first checked in 2020, I was told to immediately have someone drive me to the pharmacy or go to er, as my endo thought I could die at any moment. I was 123lbs, just bones, cried 96% of the time, always nausea, dizzy, migraine, reactive hypoglycemia, etc. I wish my 1st endo would have seen if my glands were to recover....but she never tried. I was Negative for the testing, endo has no clue how I got this. Emotional stress and too much exercise; hot yoga 7-14 x’s a week!!!!! Now I am better I guess, but every day is a hassle/struggle. I hope you Don't have it!!!! Prayers to you!!! If you do you need to be your own advocate! I just now got my rd for emergency injection of cortisol And it's not available!!!!

in reply toHhhhhhh18

Oh bless you. I'm so glad they caught it though. You must have been feeling so dreadful.

I am 99% certain I don't have Addison's. My symptoms aren't that severe, just an annoyance really in comparison to your story. Thank you for sharing.

mnlott profile image
mnlott

I learned from Dr. Platt that, "A high cortisol always indicates adrenaline dominance. Saliva tests are not recommended when a person has excess adrenaline, because adrenaline acting as a survival hormone cuts off blood supply to various areas of the body not needed for survival. This includes the salivary glands which often shows low cortisol levels in the a.m. when they should be high. This has resulted in the misdiagnosis of an entity called adrenal fatigue."

Have had excellent results from progesterone therapy.

plattwellness.com/collectio...

jrbarnes profile image
jrbarnes in reply tomnlott

This is great. I bookmarked it. I think excess adrenaline is my problem. My brother and father had these symptoms especially the restless leg syndrome and teeth grinding. Makes me wonder if we all have some genetic issue that causes increased adrenaline. Obviously my hypothyroidism plays a big part.

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