Desperate for Cortisol saliva test advice. - Thyroid UK

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Desperate for Cortisol saliva test advice.

ScotsLassLondon profile image
14 Replies

Gah! Really could do with some advice. Please!

CORTISOL & SALIVA TEST

I'm seeing a private doc (he's Belgian and uses a Belgian lab) who has diagnosed me with adrenal fatigue and hypothyroidism (bloods aren't great gauge as I have one mutation on DIO2 but I have ALL the symptoms and bloods aren't optimal - at bottom). I'm negative on Thyroid antibodies. Also have low DHEA, Iron and Magnesium and other vits/minerals most likely due to gut dysbiosis that we're working on too.

He's doing all the tests, EXCEPT the cortisol saliva test. I think he's tested Cortisol in my 24hrs urine sample. Think that's the steroid-chromatography I've listed at the bottom. Would that be right? The top reading looks high. But that doesn't paint an accurate enough picture does it?

At my last appt back in Sept/Oct he found the DIO2 so prescribed a tiny amount of Armour 1/4 grain (to move up to 1/2 grain). (I went hyper on Armour at 2 grain this time last year which I suspect was flooding, and after couldn't even handle a qtr, so I've refused it for most of the year.) This time, my gut reacted to the qtr instantly and I couldn't handle it at all - almost incontinent. So I tried T3 only. That was good with my gut but within a week all my joints (ALL) were crunching and I had pain and weakness in my bones and muscles. After a break I tried the Armour again (and thanks to this site made sure I was loaded with Iron/Magnesium/zinc/D3 a few hrs before the Thyroid meds so seemed to tolerate much better with no palpitations) - and for my gut I halved and even qtrd my 1/4 grain and I managed to spread those tiny doses across the day with better effect. I felt much more energised. But when I tried to up to 1/4 & 1/8 my joints started crunching. I dropped it down to 1/8 and the crunching subsided. But easing up again to try and take a whole qtr and the crunching is back with a vengeance.

BUT! Also I'm getting palpitations in evenings.

I suspect my intolerance to the thyroid meds are Cortisol related.

So - could you give me as much info as possible on Cortisol and the negative effects it has related to taking Armour. I need to plead my case to doc as I'm not due to see him until late March.

That aside - I'm going to order the saliva test on my own from Genova, through Thyroid UK. Which one should I order? I do have low DHEA and am taking that with Pregnenelone so I don't think I need to test that.

But also part of my treatment includes Zinc and also Ashwagandha. Which I believe have opposite effects on Cortisol levels.

Could you also tell me what I need to stop taking before the saliva test so the results aren't messed up?

Sorry this is so long! And I'm asking so much, but I'm at my wits' end!

These were my Sept bloods while taking no Thyroid meds.

TSH (2.74mU/L (rnge0.3-4.5 he prefers below 2.5)

T3free 2.38ng/L (rnge2.5-4.2)

RevT3 0.51nmol/L (rnge0.14-0.54)

TBG 18.2 mg/L (14-31)

T4 free 1.01 ng/dL (0.7-1.8)

Anti-TPO Neg <28 kU/L (<60)

TSAb <0.3 U/L (0-1)

Testosterone 221 ng/L (150-600)

Pregnenelone 0.71 ug/L (0.98-7.67)

DHEA sulf 121 ug/dL (110-430)

Urine

T3 0.27 ug/L; T3 518 pmol/24h (800-2500)

T4 0.54 ug/L; T4 869 pmol/24h (550-3160)

17-OH steroids-chromatography---

Tetrahydrodeoxycortisol 0.89mg/24h (0.16-0.54)

Tetrahydrocortison 4.45mg/24h (1.39-4.69)

Allo-tetrahydrocortisol 0.59mg/24h (0.31-1.81)

Total 17-OH-steroids 7.90mg/24h 3.17-8.63

I'd be so so grateful for any advice you mights have.

Z xx

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ScotsLassLondon profile image
ScotsLassLondon
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14 Replies
Bradleyeb profile image
Bradleyeb

I've recently done the saliva tests via Genova - I have done the adrenal stress profile. Very simple but you need to have access to a freezer throughout the day. They send through all the instructions telling you what to do and how to do it.

If you are unsure which test to do, give them a call/email them and am sure they would advise you

Hope you feel better soon x

ScotsLassLondon profile image
ScotsLassLondon in reply to Bradleyeb

Thank you!

Really appreciate.

I work from home so can put straight in freezer.

Zxx

sassicat profile image
sassicat

When taking T3, are you taking split doses through the day? When I started taking it many years ago, I bought the book on Wilson's syndrome, (wilsonssyndrome.com/identif...

and it said that becsuse T3 has a very short half-life fluctuating levels of T3 can cause aches, pains and flu like symptoms - which certainly rang true for me. If you aren't splitting the dose, try halving or quartering tablets and spacing it out evenly through the day.

Regarding armour and achy joints, can you try a different brand. Sounds as though you could be having allergy symptoms - Armour has Sodium Starch Glycolate in it which is known to cause allergy symptoms. It gives me horrendously sore joints! . Could you try Westhroid-P. Just a thought!

Your cortisol results do seem quite high, and high cortisol does inhibit thyroid conversion from T4 to T3.

Also your testosterone is pretty low. Supplementation can really help with energy levels (although female my specialist gynae prescribed a very low dose, and it makes a difference).

Ring Genova, they will know best as to what to do pre test. My 24 hr saliva cortisol test showed that I'm low during the day and high late evening, so it's helpful to have the 24 hr profile.

Also sounds as though an email to your doc might be a good plan too.

Good Luck xx

ScotsLassLondon profile image
ScotsLassLondon

Sassicat,

Thanks so much! Loads of info for me to look at.

Yeah I split the T3, but maybe not into enough doses.

Although I'm suspicious that it's the T3 that's causing the joint issues (it was extreme and fast on T3 only and was almost like a build up over time with the Armour - which would fit with the lower %age of T3 in Armour). The genetic mutation I have DIO2 means my body can't convert T4 to T3 like a normal person. Although it's only on one leg of the chromosome rather than both.

Scot in London refers to me being Scottish (in hindsight rather confusing for all) so, yes, I'm female too. Apparently the DHEA I've been taking for the last two years will be used by my body to improve my testosterone. That's why doc's got me on it. Rather pathetically that low level is an improvement for me ;-) . So I'm covering that issue slowly, at least.

Thanks for the info.

I agree re the email to doc. I'm going to get as much advice as poss (The doc never once mentioned flooding to me so thank god for you wonderful people!!) and get the saliva test. Then I'll go back to doc with results.

Hopefully he won't be too cross with me for getting the test...

Yikes!

XX

galathea profile image
galathea

Here is a really brilliant site.... Its run by the people who run the adrenals forum..... adrenalsweb.org/

You should find some answers on there!

ScotsLassLondon profile image
ScotsLassLondon

Galathea,

Awesome! Thank you so much.

XX

Jackie profile image
Jackie

Hi My endo and I have found it to be true says the only test any good is a 24 hour urine test with a cortisol tablet ( script) at midnight and blood test at 9am.

Best wishes,

Jackie

ScotsLassLondon profile image
ScotsLassLondon in reply to Jackie

Jackie,

I'm afraid I don't really understand. Could you explain that more?

Jackie profile image
Jackie in reply to ScotsLassLondon

Hi You collect all the urine passed for 24 hours,in a special container during that time you have a cortisol tablet at midnight, prescribed, then at 9am you have a blood test for cortisol. I do hope that is clear.The lab analyses the urine too.

Jackie

ScotsLassLondon profile image
ScotsLassLondon in reply to Jackie

Thanks Jackie,

I understand the process you're describing. But I don't understand the purpose behind it. I've had the 24hrs urine sample many times which I assume gauges my total natural Cortisol levels within 24hrs. But I don't understand where the Cortisol tablet at midnight comes into testing natural levels.

Is the blood test in am testing your uptake of that tablet? Because the tablet would completely skew a reading of natural levels. Which is what I'm trying to ascertain...

Sorry, I'm just trying to get clear why you're taking a Cortisol tablet.

I really do appreciate your time!

Jackie profile image
Jackie

Hi Each urine collection is just for a specific thing and the cortisol must be with the other 2 tests.

Jackie

ScotsLassLondon profile image
ScotsLassLondon

Right, ok. Thanks for your time.

Ctb567 profile image
Ctb567

Hi ScotLondon, when I first had my saliva cortisol done it was below range but during this time I had a borderline b12 and it was treated with injections. After my injections I went in to have my saliva cortisol repeated and this time it was bang in the middle of normal. I suppose my advice would be to sort out all your deficiencies as this could improve your cortisol, I think just being in general not well can mess up cortisol so its something to try.

For the saliva cortisol don't eat or drink anything before you have it done (you can have some water up to an hour before the test) and don't take any supplements that help the adrenals 2 weeks before the test.

Good luck!

ScotsLassLondon profile image
ScotsLassLondon in reply to Ctb567

Thanks CarlyS123!

It could be that that's exactly what my doc's plan is. Although it would be worth having the saliva test as a baseline like you did.

Many thanks,

Zx

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