How to prepare for cortisol saliva test - Thyroid UK

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How to prepare for cortisol saliva test

35 Replies

Hello lovely people,

I have ordered a Regenerus saliva cortisol test to try and work out why t3 disagrees with me so much.

I wanted to ask if there is anything I must avoid outside of caffeine, strenuous exercise and any kind of steroid medications/cortisol supps (which I don’t take anyway)?

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35 Replies
SeasideSusie profile image
SeasideSusieRemembering

Just follow what it says on their instruction leaflet which is included in the kit.

in reply toSeasideSusie

Yes will do, nothing outside of what I state above. I thought in the group I’d seen a more extensive list of different foods to avoid also for cortisol reading, but wasn’t sure… I’d imagine dark chocolate for instance might be a poor choice?

SeasideSusie profile image
SeasideSusieRemembering in reply to

It just says to not consume food or drinks that contain caffeine on the day of collection.

in reply toSeasideSusie

Oh I must have misread, I think I was just thinking about drinks. Thank you

Hedgeree profile image
Hedgeree

Hi Relentlesssearch,

As SeasideSusie says follow the instructions carefully. I had to keep re-reading to make sure I'd understood them properly. Also if you're a tea drinker don't forget about the caffeine in regular tea.

Good luck.

in reply toHedgeree

thank you!

Jefner profile image
Jefner

I feel it doesn't agree with me either. Can you tell me why you think the same about you and how does it make you feel

in reply toJefner

hey :) yeah I have been doing a lot reading about why I can’t tolerate thyroid meds. A lot of sources seem to suggest that very low (which I have) or very high cortisol will stop us using thyroid hormone appropriately. And then there are cofactors, so I’ve basically got this list of things so far that seemingly need to be optimal as a minimum, I’ve put next to them the best ways to test them.

B12 (blood draw)

Folate (blood draw)

Vitamin D (blood draw)

Iron (blood draw)

Cortisol (saliva + pre-9am blood draw)

How I feel -

When I try to raise my dose of t3 medication I feel suicidal anxiety, flu-like, screeching tinnitus.

Jefner profile image
Jefner

so glad you posted thank you because I don't feel adding ANY T3 has made me feel better. I have so many questions because your response was relevant to me. When I obsessed over my Hashi's, and testing like mad, my cortisol levels were extremely high, mainly in the mornings. Think they have settled down a bit since then but I find I cannot tolerate the slightest bit of stress anymore.

May I ask how long you have been on T3 and what dose are you taking and how do you dose ie. split dosing or whole amount once daily?

Are you a bad converter like me which is why you added it? I am assuming your levels are below par like mine which is why you added some? Do you only experience those awful symptoms when you try and raise your dose and by how much? Do you have anxiety anyway which just worsens with the T3?

Apologies for so many questions but I feel they may be relatable to me

in reply toJefner

hey :) no worries! I know the feeling. If you read my bio I have a lot of information listed there about my history that might be of interest. But in a nutshell I don’t take any thyroid medication at all at the moment as I removed it so as to take cortex so I could reintroduce the thyroid hormone - I am following Barry Peatfield’s book’s recommendations. I love the adrenal cortex extract supplement, I take 600mg of that a day and I’m starting on progest-E soon too! X

Jefner profile image
Jefner

I am still interested in knowing what dose T3 you were on and how much you increased by when you had that awful symptoms which I am experiencing right now, although I have had anxiety for most of my life but it's particularly bad today because I got very stressed yesterday in having to go to the dentist which I fear so much. I have been messing with my T3 dose recently and missing some doses out and wonder if I am experiencing side effects from it.

Feeling so on edge and panicky right now and just want to end it. Fatigue is bad too along with all the anxiety symptoms. I just don't know what to do with myself or even how to help myself anymore

in reply toJefner

😞 I’m so sorry you feel so unwell. For me the T3 as I mentioned above gave me suicidal anxiety and flu-like feelings if I was ever on it with t4. I can’t easily tolerate any T3, whatever dose you like I can’t do it - whether that’s 5mcg or 50mcg.

How long have you been on the T3? Is it liothyronine? How much are you taking?

Jefner profile image
Jefner in reply to

been on 10mcg Liothyronine in one dose for about 4yrs and my levels are still lowish in the range from what everyone says on here but because I was messing with hrt I never changed my dose as changing too many things at once you lose track of what and what isn't working. I tested recently and still lowish so was recommended to split dose and increase by 5mcg but just can't help thinking it worsens my already present anxiety so missed a few doses recently to test the water and I felt slightly better but NOW, I feel worse than ever, probably because I have messed with it and misses doses. I would like to come off it totally to see what happens but missing my doses may have worsened things and apparently you have to wean off it somehow and I don't know how

in reply toJefner

OK, so you might have withdrawal from the T3 as it sounds like you have dropped your dose? I also have experienced this, Paul Robinson advised me to drop 72mcg of T3 with no taper and I have never ever been so mentally unwell in my life, I was hospitalised. But it passed. Is that possible?

Jefner profile image
Jefner in reply to

but it's only such a small dose 10mcg. Missed it for a couple of days but started to split dose ie. 2 x 5mcg a day and then introduce a further 5mcg but missed a few of my split doses so wasn't getting the full 10mcg let alone being able to up it to 15mcg

in reply toJefner

So for example, what have you taken today?

Jefner profile image
Jefner in reply to

i changed my sleeping patterns some months back which is pretty bad in that I don't go to bed until around 3am and get up lunchtime because of building works next door that have been going on for nearly 2yrs now. I can't bear the noise every day which has worsened my anxiety and depression, so my theory was the later I woke up the less time in the day I would have to tolerate the noise.

I do however set my alarm for around 10am and take my 125mcg levo and whereas I would take 10mcg with it, since my recent test results and on suggestion by SeasideSuzie, a couple of weeks ago I decided to split dose and take 5mcg with my Levo and then another 5mcg early evening. I go back to sleep for a couple of hours and then take around 10mg Propanolol which I am trying to wean off and replace with just under 1mg Diazepam as the Propanolol doesn't give me the mental relief the Diazepam does.

I have just read your profile and omg you have been through it like me trying to find the right route in feeling better but I just feel I have just messed things up totally in the last couple of weeks and I am paying for it. I am desperate for help that my GP can't give me

in reply toJefner

oh goodness your sleep cycle is really in a bad way! That could cause medication tolerance issues alone! Your circadian rhythm is extremely important - I can send you some good podcasts on it if you like?

Jefner profile image
Jefner in reply to

I know it's completely knocked out and they are supposed to finish the works by the end of the year. I just never feel well every waking hour of the day except late at night when most of the time I feel normal and have no symptoms whatsoever. It's like I could climb a mountain, I can think straight, I have energy BUT as soon as I wake up my head if flooded with negative scary thoughts that come out of nowhere and just fuels my anxiety. I live on my own, rarely speak to or see anyone because I get agoraphobic as well. I just can't get off this cyle of despair and negativity which has plagued me for years. I was thinking of finding a private therapist but maybe I need to search for a decent Endo?

The one I saw about 4yrs ago was a German Professor, top notch. He got me scans on the NHS on my adrenals and pit gland as my cortisol levels were so high. I gave him every test result I had, which were so many. My rt3 showed above range which told him I didn't convert well so I mentioned the T3 to him from advice here. He was reluctant to give me any because he said it might worsen my anxiety especially with my cortisol levels so high and basically told me to go home and get my stress levels down and that was it. I was gobsmacked, he was supposed to be the best. He just referred me to a psychiatrist and all she did was hand out anti depressants and there was no therapy.

I noticed you tried Seroxat/Paroxetine, which I have been on for 15yrs and it helped me tremendously and after a month on it my anxiety symptoms completely disappeared for the first time in 25yrs. It was amazing and I was so well until I hit peri menopause and then discovered I was hypo. It's been downhill all the way since especially when my body crashed about 7yrs ago and I was in 24hr panic attack mode and I didn't know why.

When I came to this site I was told to test for Hashi's and I did and my antibodies came back at 4,000 which would explain why I was feeling that way. Went gluten free etc after that and for a couple of years they hovvered around 2-300 mark and 12 months ago and my recent test showed them at the lowest they had ever been.

These are my recent ones

Ferritin 101.0 13 - 150 ug/L

Magnesium 0.91 0.66 - 0.99 mmol/L

Cortisol (Random) 235.0 6am - 10am 166 - 507 nmol/L New range

4pm - 8pm 73.8 - 291

TSH L 0.04 0.27 - 4.20 mU/L New range & unit

T4 Total 124.0 66 - 181 nmol/L

Free T4 18.3 12.0 - 22.0 pmol/L

Free T3 3.89 3.1 - 6.8 pmol/L New range

Anti-Thyroidperoxidase abs H 48 <34 IU/mL New units

Anti-Thyroglobulin Abs 56 <115 IU/mL New units

Vitamin D (25 OH) 60 Optimal 75-200 nmol/L

Adequate 50-<75

Vitamin B12 H 704 145 - 569 pmol/L

Serum Folate 35.20 8.83 - 60.8 nmol/

As you will see my T3 is still low in the range and just keeps being that way on every test hence others on here saying I need to increase which I did a couple of years ago and when I tested I went over range, although I didn't feel any different. At that time, being post meno, I tried hrt hoping that it would help the anxiety as I was desperate. I just went back down to my 10mcg T3 and stayed there ever since and have just struggled on. The hrt patches, after a blood test, weren't working for me so the Meno Specialist I was seeing changed me to gel which worked better but when she told me to up it again as my levels still weren't quite there, it made me so ill I nearly topped myself. So I stopped it, went back on the patches so at least I was still getting some hormone with a view to probably coming off it altogether and never went back to that so-called Specialist again. He nearly made me kill myself.

A few months ago I decided to gradually wean off the patch but cutting a bit off it every few weeks to see whether I felt better or worse on it and tbh it didn't seem to make much of a difference so I am back on the whole patch (which isn't enough) and I am in talks with my GP as to her finding me something with just a bit more estrogen in to see if that makes a difference.

At this point I just don't know what to do. I have been trying to find the route cause of my severe anxiety and just can't and I just exist every day now. If I could get rid of the anxiety I could function again and get out and about and have a life but I am just sat at home all alone on the internet all day with no-one to talk to, on a vicious destructive cycle.

I am wondering whether it may be time again to try and find another Endo that I can work with remotely? I just don't know what to do, apart from die

in reply toJefner

I really really feel for you, I’m so sorry that you’re going through this. Those antibodies dimension are absolutely insane, they are incredibly high you must’ve felt dreadful. I definitely think investing in an Endo as opposed to a therapist would be a good idea, this forum I think has a list of reputable ones that they do recommend but I’m not sure how to find them. You could perhaps create a new post asking for recommendations? It does sound like your mental health is suffering a lot, and I’m not quite sure what medication you are on at the moment… Was it propanolol/diazepam? How about going back on the paroxetine to get you stable? I’m not very good at reading vitamin levels to be honest but there are people on this forum who are really good at it.

I would recommend that you make a new post and you publish all of your results asking whether they are optimal/in range or not, as this can sometimes be the difference between tolerating T3 and not tolerating it.

Have you ever looked into progesterone? It can really ease menopausal symptoms.

Jefner profile image
Jefner in reply to

propanolol is a better blocker and helps with anxiety. Diazepam is basically Valium, I try not to take too much, just enough to take the edge off. I am still on the Paroxetine and upped my dose from 20mg to 30 some months back but makes no difference so I will be on it for the rest of my days because it's the worst one on the planet to come off, even done slowly of up to a year. I read up and people are still suffering withdrawal from it years later.

I did a post with my latest results on as requested by Suzie and she just replied in upping my T3 by 2.5mcg or 5mcg and taking in split doses. No-one else replied :(

My meno specialist and GP said no more progesterone as that worsened things for me and you only need enough to line the uterus anyway. I am 60 now and not even sure I still get symptoms, I am just a complex case, as called by many

in reply toJefner

no - I don’t believe it! You just need the right people. Someone who is incredibly knowledgeable is this guy - linktr.ee/TommoL, I think it’s worth contacting him for a consult.

Did you post your vitamin levels or just the T3 when only susieseaside replied?

Jefner profile image
Jefner in reply to

put the whole lot of results in

in reply toJefner

hmm not sure why that happened. The guy I linked above is worth a shot for sure 😊

Jefner profile image
Jefner in reply to

I used to work with a Functional Nutritional lady in London and she was good. I had so many tests but I can't afford it now and this guy looks to be a similiar thing and not an Endo

in reply toJefner

in my experience he’s much better than endo as his advice is much better and root cause based, and much less expensive but I know what you mean x

Jefner profile image
Jefner in reply to

is he familiar with women's hormones and meno though lol

in reply toJefner

he is a PhD researcher in T3, but his area of expertise is female hormones so I’m sure he understands meno :)

Jefner profile image
Jefner in reply to

very interesting thank you, I think I will approach him

Heloise profile image
Heloise in reply to

Hi Relentlesssearch, I wanted you to read the response I posted to Jefner below.

Heloise profile image
Heloise in reply toJefner

Have you thought about what you are eating? You know that neurotransmitters are made in the gut and if you have major dysbiosis things go wrong. Even parasites can have an effect, giving off toxins. Have you tried any kind of detox? There are herbs like berberine which so many functional doctors put their patients on. Eating whole foods may help your microbiome balance itself. It will help your liver which is where most conversion takes place and be the reason why you don't. You have to work from different angles.

This woman has been on a few Summits I've watched and a real guru when it comes to female hormones. theshiftclinic.com/podcast/...

Jefner profile image
Jefner

he has got back to me already with 3 different plans he offers but unless he agrees to an initial consultation, from reading and watching his youtube vid, there isn't enough one to one support, it's like he gives you certain plans to follow and you are left are your own to do it. I need one to one help with my anxiety/agorap[hobia issues and I don't think he can offer me that

in reply toJefner

maybe you need to get some additional psychiatric support from the GP/NHS for the short term approach and then use his plans for the long term gains

Jefner profile image
Jefner in reply to

i was assessed for it and can't get it despite being suicidal a couple of years ago and went into hospital. NHS are crap

in reply toJefner

but you’re not even on anything additional. Have you ever tried quetiapine? It has saved me one more than one occasion. I think the premise that you need short term support, whatever works, but still to implement some long term plan is the way to go x

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