Question re Cortisol saliva test?: Hello i did my... - Thyroid UK

Thyroid UK

137,814 members161,641 posts

Question re Cortisol saliva test?

GreenTealSeal profile image
27 Replies

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

Written by
GreenTealSeal profile image
GreenTealSeal
To view profiles and participate in discussions please or .
27 Replies
TiggerMe profile image
TiggerMe

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🤗

GreenTealSeal profile image
GreenTealSeal 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!

GreenTealSeal profile image
GreenTealSeal 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 profile image
TiggerMe in reply to GreenTealSeal

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

GreenTealSeal profile image
GreenTealSeal 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 profile image
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!

GreenTealSeal profile image
GreenTealSeal 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 profile image
FallingInReverse in reply to GreenTealSeal

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!

GreenTealSeal profile image
GreenTealSeal 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 profile image
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.

GreenTealSeal profile image
GreenTealSeal 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 profile image
caledoniancat in reply to GreenTealSeal

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.

GreenTealSeal profile image
GreenTealSeal 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 profile image
caledoniancat in reply to GreenTealSeal

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 profile image
HealthStarDust

Have you asked GP for blood cortisol?

GreenTealSeal profile image
GreenTealSeal 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 profile image
HealthStarDust in reply to GreenTealSeal

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.

GreenTealSeal profile image
GreenTealSeal 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 profile image
HealthStarDust in reply to GreenTealSeal

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.

GreenTealSeal profile image
GreenTealSeal 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 profile image
HealthStarDust in reply to GreenTealSeal

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.

GreenTealSeal profile image
GreenTealSeal 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 profile image
HealthStarDust in reply to GreenTealSeal

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

GreenTealSeal profile image
GreenTealSeal 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 profile image
HealthStarDust in reply to GreenTealSeal

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 profile image
HealthStarDust

Bu the way which saliva test did you go for?

GreenTealSeal profile image
GreenTealSeal in reply to HealthStarDust

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

You may also like...

Adrenal Saliva Test - question

those 4 years ...... I did try LDN for a while around the time of the first 2 tests, and then had...

24 hour Adrenal test (saliva) - High cortisol

story is in my first thread. I did a private adrenal stress test in September this year and I have

Morning saliva cortisol test

I recently posted a saliva cortisol test from medichecks and dont have the results yet. But does it

Cortisol Saliva test results

Hi, I’ve done the cortisol saliva test result shown in the photo below. it advises adrenaline...

Cortisol saliva test results

I’ve just had my third cortisol saliva test done and am interested to get advice from the experts on