Question re Cortisol saliva test?

Hello i did my 4 point cortisol saliva test on Sunday and I am worried…

I was advised to avoid any caffeine or chocolate on the day so complied. I normally have 2 coffees in the morning and not a huge choc fan anyway so didn’t seem like a big deal to me.

I felt okayish when I got up and did my first test, then within an hour I could feel a flare up coming on…(see prev post for deets)

• I spent the day completely white with a yellow tinge.

•constant nausea and nearly vomited several times

•I felt unsteady and weak

•Faint/semi conscious

•My speech was muddled and I was easily confused

• had a cracking headache all day that was worse when moving around.

This all got increasingly worse as the day went on, I almost felt drunk tbh.

I slept ALL day with my partner waking me to do my tests on time- last one had to be done sitting on the kitchen floor because it was too hard to stand. When it was complete I keeled over on the kitchen floor and slept because I felt too unwell to move from there.

My partner managed to move me to the sofa and I slept there till 2am. He stayed by my side all that time cos he was worried by my breathing.

The only thing I did different was not have my two coffees- could that be the cause?

I’ve skipped days without coffee before and never reacted like this so it seems really odd? Is what happened normal?

Have I messed up my test?

It takes around 20-25 days to come back so am worrying I’ve mucked it up!

Thanks for listening!

GTS

[TiggerMe Ambassador]

That all sounds a bit grim ☹️ it would suggest that your system relies on the stimulation from the caffeine to increase your cortisol levels

It won't have messed up the test but it will give you a better view of what is going on without other stimulants

I've never managed to do any of the tests without feeling weird, I think it is just the stress of performing

They often turn the results around faster than that🤗

[Hidden in reply to TiggerMe]

SO grim- I’m still recovering 2 days on!

I’m so relieved to hear I haven’t stuffed up the test- phew! They’re so expensive so that’s a relief!!

Oh I do hope so- 2 weeks kinda feels like forever when you’re waiting on results!

Thanks for your reassurance Tiggerme!

[Hidden in reply to TiggerMe]

Oh also just quickly o had one other Q which I hope is okay to ask…..

You said you tried adrenal cortex supplement and then went onto hydro- did you self treat or was this prescribed NHS/private?

I’m just not sure I have it in me for another almighty fight with NHS!

[TiggerMe Ambassador in reply to Hidden]

Self treated, I couldn't face the prospect of dealing with the NHS and couldn't afford the private route

[Hidden in reply to TiggerMe]

Interesting, thank you! Getting way ahead of myself but I may come back to you in the future with more questions if I need to self treat!

I just started working with a new Dr and although they seemed very clues up about adrenals, I’m not sure what their stance is on how it should be treated. Especially as I’ve been doing all the life style and diet changes recommended for years but now am too unwell to keep up with it all. Currently surviving on orange juice and soup because I can’t stomach anything else, my weight has always been on the

low side so keen to get treated asap before I become a stick person!

[FallingInReverse]

How did you fill up the tube all the way? I’m trying my cortisol test today and it’s way harder than I thought, taking way longer than I thought, and I still didn’t reach the half way mark!

[Hidden in reply to FallingInReverse]

Mine needed it to be 3/4 full and tbh that was a real struggle!

It was suggested sniffing a cut lemon/lemon juice or apple cider vinegar to make you salivate more - which helped...still took me like half an hour per tube though!

Good luck with the rest today!!

[FallingInReverse in reply to Hidden]

The problem was with the morning ones

First - upon waking

Second - 30 min later

Third - 30 min after that.

Like…. How?!!!

I’m going to call the company later, as since it indeed takes at least 20 min, how do I know when one ends and the other begins!

[Hidden in reply to FallingInReverse]

Ah that sounds impossible!! - mine was 30 min after waking-midday-late afternoon- bedtime so i had a few hours in between to recover!

The leaflet in mine did say it can take 5-30 mins to fill each vial!

Not sure if they're recommended on here but you can get ones with a chewable swob thing which sounds a bit easier - I think Medichecks does one!

[caledoniancat]

Hi GreenTealSeal, cortisol helps you deal with stress. It may be that doing the tests was making you more anxious and stressed and if your adrenal glands are struggling there would not be enough cortisol to help you cope. The symptoms you list are a typical response to low cortisol in a stressful situation. Hope you get your results soon.

[Hidden in reply to caledoniancat]

Hello! Thank you for your reply!

Weirdly I didn’t feel stressed at all- I’d decided to set alarms for my test and then have an entire day watching my favourite shows and playing video games. I was really looking forward to having a nice relaxing day but when things took a turn early on I didn’t manage any of that, just sleeping! I barely even ate either 🤦‍♀️

I definitely agree that low cortisol may be to blame - I had a quick look at the symptoms and they sound familiar! It’s scared me that I am so dependent on coffee to prevent this! It’s so weird cos I’ve never been a huge coffee addict and would often skip days not drinking it, but now I’m scared to stop it!

I will be so intrigued to see my results from this (and I hope they are no errors cos I’m not sure I could bear to do it all over again right now!)😬

[caledoniancat in reply to Hidden]

Hi GreenTealSeal, you don't necessarily need to have felt stressed but if you did and have poor cortisol levels, you likely would have felt even worse and the lack of coffee would add to that too. It is physiological stress, so even having a wonderful or exciting time can add 'stress'. Yes, you need your results, fingers crossed they can give some insight into how to help you feel better.

[Hidden in reply to caledoniancat]

Ah okay, that makes more sense. Tbh I feel like my body craps out on me when i do much of anything really, even activities/hobbies i love!

Thanks for your reassurance, I'm so tired of being told by GP's that what i'm dealing with is a mental health issue when i know it isn't. You're right it's defo physiological not psychological.

If I may ask and if you're comfortable to answer... have you had adrenal issues too? What was the outcome and how did you get better?

I'm genuinely starting to think that I've been misdiagnosed and that it's my adrenal crashes that are causing my TSH to jump up high out of range as my other thyroid levels have always been pretty okay and any thyroid meds are just making these symptoms so much worse.

[caledoniancat in reply to Hidden]

A related teenager was exhausted, sore muscles, headaches etc and originally diagnosed as hypo but her health deteriorated really quickly on levothyroxine. This resulted in dizziness, vomiting, more exhaustion, headaches and lots of worry. She took to her bed after watching Andy Murray winning his first Wimbledon and ended up in A&E 3 days later. Diagnosed with Addison's disease within 20hrs (all a shock and a steep learning curve). Out of hospital 5days later on daily hydrocortisone and fludrocortisone (no levo). Her hypothyroid results were decided to be secondary to the Addison's disease, but I suspect she will eventually need thyroid hormones when older (hypothyroidism runs in family). She leads a relatively normal life, gym, nights out, full time job, own house etc, but had to learn how to recognise when she needs more hydro due to 'stress'.

[HealthStarDust]

Have you asked GP for blood cortisol?

[Hidden in reply to HealthStarDust]

Not just yet but I have an appointment next Tuesday so going to ask cos this just doesn’t seem right to me at all!

I’m very surprised given my symptoms and flare ups that no dr suggested it before

[HealthStarDust in reply to Hidden]

It had been suggested by a professional in my care (not a GP or endocrinologist) but it came back quite high in range so no further action. Although, accepted guidance state it doesn’t necessarily rule it out.

[Hidden in reply to HealthStarDust]

That interesting. Tbh if they won’t do it I’ll just pay for one privately if I must!

Do you have the flare ups like me?

Ive done a saliva test and waiting on results right now 😬

[HealthStarDust in reply to Hidden]

What do you mean by flares?

Re blood cortisol, GP has done mine twice. No issues getting in. The issue is if it comes back in range like mine have it seems nothing more is done.

[Hidden in reply to HealthStarDust]

Ah so I’ve been getting flare ups of those listed symptoms in my original post for years- it’s the reason I went to dr and it was all put down to being subclinical hypo but I’m honestly not convinced it can all be put down to thyroid 🤔

Yeah I fully expect it to come back as normal but no harm checking

[HealthStarDust in reply to Hidden]

Ah. I see. I know what you mean but it’s so hard to say which symtoms are from which disease or from both or neither.

[Hidden in reply to HealthStarDust]

That’s true.

sometimes I even question if I have a thyroid issue and it isn’t my adrenals driving up my tsh randomly. Such a minefield!

[HealthStarDust in reply to Hidden]

Sometimes I wonder if the levothyroxine hasn’t poisoned me along with my adrenals and other hormones!

[Hidden in reply to HealthStarDust]

I hear ya! I’ve given up on thyroid meds again for now - I just can’t manage to take them without it making everything else so much worse.

[HealthStarDust in reply to Hidden]

As someone has has now twice stopped taking Levothyroxine (due to overmedicated symptoms) and now so keen to go back on it, I completely understand.

[HealthStarDust]

Bu the way which saliva test did you go for?

[Hidden in reply to HealthStarDust]

I used nordiclabs through a dr but tbh if I have to do another I think id use regenerus- cheaper!

[caledoniancat]

Just a few weeks. She was started on 25mcg levo and after 4wks that was upped to 50 mcg then around 2wks later she ended up in A&E.

[caledoniancat]

Symptoms as described in response to GreenTealseal above (dizziness, vomiting, more exhaustion, headaches) but in retrospect after finding out she had Addison's it was clear she had other Addison's symptoms e.g. muscle and joint pains, craving salty food, hyperpigmentation of skin but also on toenails, brain fog and more dizzy when standing after sitting also, some weight loss.

[humanbean]

With regard to blood cortisol and saliva cortisol...

They don't actually measure the same thing, and of course, blood cortisol is generally only done once at around 9am when it is hoped or assumed that cortisol is at its highest, whereas saliva cortisol is done 4 or more times in the day so you find out what your output of cortisol is like throughout the day. (Cortisol has a circadian rhythm.)

Are you aware of the difference between Total T3 and Free T3?

Free T3 tells you the level of T3 that is available for immediate use in the blood, and the body can use it without any conversion to something else. Total T3 tells you the total amount of T3 in the blood and it must be converted to Free T3 before it can be used. Total T3 is T3 that is attached to transport proteins, and before use the transport proteins must be stripped off before the T3 can be used.

If you think of cortisol the same way I've just described Total and Free T3, then blood cortisol is Total Cortisol, and Saliva Cortisol is Free Cortisol, although that terminology isn't used. Instead the terms used are Bound and Unbound Cortisol instead of Total or Free.

One of our members had normal levels of blood cortisol, but very, very low levels of saliva cortisol. The solution for her was taking T3. Her saliva cortisol rose dramatically to normal levels.

So, it is worth having a saliva cortisol test done (despite the fact the NHS doesn't use them), but it is also worth having a blood cortisol test done. If one is good and the other is not, it actually gives you valuable information about what might be a problem.

If you do get a blood cortisol test done, make sure to get it done at around 9am, assuming your waking time is fairly normal. The test is supposed to tell you what your maximum blood cortisol is. If you get blood cortisol tested at a random time then the reference ranges are utterly absurd and the results are meaningless for most people, unless the random cortisol is very, very high or very, very low.

I'm never sure what time someone should get a blood cortisol test if the patient is a long-term insomniac or shift worker.

[Hidden in reply to humanbean]

Hi thanks for your reply:

I made a post w my saliva cortisol test results and have also had a 9am blood cortisol: 359 (133-537)

T3 seems to make my problems a thousand times worse and makes me severely ill. So I’m not really sure what the answer is for me?

I have an NHS endo referral but this is 6 months away and seeing as I can’t tolerate any thyroid medication, I’m not sure what to do?

My latest TSH was 8.5 (0.27-4.2).

I suspect I have some kind of adrenal issue that is significantly worsened by thyroid medications. Or perhaps I should consider a heart issue?

I’m upset NHS are happy to leave me collapsing on the floor w these symptoms for 6 months. It would be laughable if it wasn’t so serious.