Cortisol through the roof !!! Please help - Thyroid UK

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Cortisol through the roof !!! Please help

Can someone please help me understand my latest adrenal saliva test results, it's scaring me!

I've been ill for almost a year, I have a sore throat and I can only swallow liquids and therefore have lost a lot of weight. I had an endoscopy but everything looked normal. I've suffered with tinnitus (ringing ears) for years but the past year it is especially loud and unbearable at times. The doctor blamed my sore throat on acid reflux (even though I don't actually get heartburn, just burping and occasional stomach pain) and I've been taking 40mg omerprazole daily for about 6 months.

In the past few months I seem to have become hypersensitive to chemicals/scents : if I smell perfume or cleaning products it seems to make my throat/symptoms worse.

39 Replies
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When was last time full thyroid and vitamins tested?

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. Add results and ranges if you have them

Omeprazole is a PPI and lowers stomach acid

But when hypothyroid (as your previous results suggest) LOW Stomach acid is often the problem...not HIGH acid

Very similar symptoms, but very different treatment

Omeprazole will almost certainly be lowering your vitamin levels, especially B12 and magnesium

However you can NOT just stop any PPI.

Read up thousands of post on here about low stomach acid

healthunlocked.com/search/p...

pulsetoday.co.uk/clinical/m...

Tinnitus is common symptom of low B12

gov.uk/drug-safety-update/p...

Cortisol may be high to try to counter low vitamins and or being hypothyroid

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Hi, thank you for your reply, I will get my thyroid and vitamins tested. I will show my GP the results but I doubt he will take them seriously! I feel very lost and confused, I have had an ultrasund scan, endoscopy and sigmoidoscoy, all clear. Done stool testing which showed medium to high candida, could that cause high cortisol like this? I have never had a result like this before, its frightening, but I do feel dreadful!

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Hi, just remebered the last B12 test I had at the doctor's was low, 177, but the GP said it was fine but I thought it was low because the range was starting at 100. What do you think?

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Yes any B12 under 500 can be too low

Candida linked to being hypothyroid

thyroidpharmacist.com/artic...

verywellhealth.com/candidia...

naturalendocrinesolutions.c...

I think considering you have been taking HC in some form the adrenal test doesn't necessarily reflect true results

Next step I would suggest is full Thyroid and vitamin testing but probably make sure no HC for at least a week before, longer if possible

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. £99 or Both companies often have money off offers.

Make sure to do it as early as possible in morning and fasting

Come back with new post once you have results and ranges

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

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I have ordered the blood test for £99 for thyroid and vitamins and will put up the results when I get them. I have a feeling I should not have taken omeprazole as the GP may have been wrong and it wasnt high acid but low! Now I cant get off them, when I reduce the dose I feel worse! What I cannot understand is when I was on 40mgs of H C and I had a saliva test before I never had high cortisol, now I dont take it my result is through the roof! The advice from Genova is to take H C or Prednisone, surely that is wrong!?

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Hi, I have done the tests you have suggested and posted the results but no one has commented, sorry to bother you but can you help me please?

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hebbyh

Two things come to mind. Cushings Syndrome or you've been taking something to raise your cortisol level.

I think you should make an appointment to see our GP, take these results with you, point out your exceptionally high levels of cortisol throughout the day and your almost non-existent level of DHEA.

Be totally honest if you've been taking something. If not then ask for investigation into possible Cushings Syndrome.

You should be referred to an endocrinologist for further testing.

nhs.uk/conditions/cushings-...

pituitary.org.uk/informatio...

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Hi, I havent been taking anything but I have suddenly got piles, never had them before and have been using HC suppository but only once a day and they are anusol 10mgs hydroocortisone acetate, Could that be the cause? I have had several tests but all have been clear, endooscopy, sigmoidoscopy, ultrasound of kidneys, liver etc. Stool test and saliva test showed medium to high candida? could candida be the problem?

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Yup hydrocortisone will definately send your cortisol levels spiralling to the clouds and beyond and so will oestrogen -HRT or oral contraceptives -definately see your Dr about this if they have any sense they will take you off the suppositories for 6-8 weeks then retest! I share your worry my serum cortisol recently came back at 857mmol on a range of up to 537 tops! Luckily I’ve seen a brilliant endo in London who has stopped my HRT and back for testing in 6 weeks, it will be fine :-) just hang in there!!

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Hi, Thanks for your reply. I do not see an endocrinologist, I used to see Dr Peatfield but he only treats a few people now so I feel I'm on my own with this, its awful! Do you know of any endocrinologists in the Hull area? There doesnt seem to be any one in this area who deals with these problem! GP and the Gastroenterologist who I've seen keep saying its just anxiety but I know it is not!

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Hebbyh,

Have I got this right that your Gp is saying your high cortisol levels are due to anxiety ???? Nuts - it’s the hydrocortisone likely to be the main cause here, I think you need to see another Gp in your practice and take the results with you, I’m in London so not too up on Hull endos but will look for you, in the meantime see another Gp who will take you seriously and remind them that you have the hydrocortisone suppositories ongoing - xxx

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Hebbyh

Looking back at your previous post a few months ago you said

"On my last adrenal saliva test I had very low dhea and normal cortisol on the first and last sample and too high on the second and third samples. Dr P advised me to keep on supporting the adrenals which I do with 25mgs of hydrocortisone per day but he didnt advise anything for the very low dhea."

How long were you taking 25mg hydrocortisone daily, did you check your adrenals whilst you were taking it? When did you stop taking it? At what stage did your cortisol level increase to this level?

I remember many years ago Dr P had me on hydrocortisone or Prednisolone (can't remember now) and eventually I ran out of money for private consultations, meds and testing, and I saw an NHS endo. When he knew I had been taking the hydrocortisone he went berserk, telling me I had "buggered things up", etc.

I think you should discuss all this with your GP especially as you're now taking HC suppositories.

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Yes I had hydrocortisone for 10 years 25-40 mgs a day, but when I got poorly in January and the GP said it was acid reflux I spoke to Dr Peatfield on the phone a couple of months later and he said to stop the hydrocortisone as it can make the acid worse so I havent taken any for months now only what is in the suppositories for piles 10mgs which I dont use everyday. I have become allergic to every thing and have high candida is this due to stopping HC abruptly?

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Hebbyh

"have high candida is this due to stopping HC abruptly?"

Sorry, I have no idea.

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Hi

I had high cortisol readings in the morning and 12pm (not as high as you) and my DHEA was low.

I’ve been advised to have a 8am blood cortisol test as this is more accurate.

It’s all connected to the adrenal gland, someone recommended taking Ashwagandha to reduce high cortisol levels, but until I have my blood test I’m not taking anything, other than my Thyroid medication.

As others had advised it maybe a good idea to see what your GP says or ask to see an Endocrinologist.

Hopefully this may explain a bit more.

healthline.com/health/high-...

Best wishes

Peanut31

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Hi, Thanks for your reply. I had a morning blood test for cortisone a couple of months ago, it was 500, but I dot know what that means? I tried ashwaghanda once but it sent my tinnitus in to orbit so never again! I am sensitive to salicylate so it might have been from that? I jst feel terrible! Mythroat is so dry and sore and when I drink water it swells up! I am really suffering but my GP and Gastroenterologist can find nothing wrong!

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Hebbyh, if it was a U.K. test the ranges here usually top out between 537 or 600 mmol depending on the lab, it’s supposed to be at its highest first thing in the morning so 500 is fine - although if you can get a serum dhea level that would be helpful too :-))

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So should I ask the GP to retest the cortisol and also do a serum dhea test?

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By the way the 500 was midway between the range.

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Excellent that’s ‘ok’ although they like it to be highest first thing midway is not the highest, what was the range just out of interest?

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Hi Hebbyh, Yes definately do- but first you need to consult with a decent Gp there’s no point getting your serum cortisol checked until you’ve been off the hydrocortisone suppositories and it’s out of your system :-))

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I think the range was something like 100 - 1000? I thought it was quite low for a morning test, I was probably doing the hc suppositories then too! How long should you be off hc before the blood tests?

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Hebby was that a serum cortisol test, ? there are no U.K. ranges with such a wide scope ! Maybe ask for a copy of the results from then the Gp receptionists will do a photocopy for you to pick up and it should show the range as well :-))

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Yes it was a nhs test. I'm sure it was 100 - 900 as I know I was in the middle and I thought it was low for a morning test.

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ebmconsult.com/articles/lab... Hebby this gives you the ref ranges more usually used in the labs in the UK, you might find it helpful I’m genuinely puzzled as I work in the NHS and have not come across such a wide range as you were given being applied - that said some labs maybe are working to different measures being used for the calculation - either way hope the above helps!

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Taking hydrocortisone can mess up adrenals for some months after.

You should ween off any medication that affects adrenals incredibly slowly.

Like SeasideSusie I too got in a right pickle taking prednisone under Dr P about 15-20 years ago.

Took months to sort out with my NHS endo's help.

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The reason I stopped the hydocortisone is because I thouht it was making acid reflux worse, but since stopping I have become more ill. I have very high cortisol but the symptoms of adrenal fatigue! Have lost loads of weight and am very thin, have no cushings symptoms.

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One thing that can affect cortisol that nobody has mentioned as far as I can see is that getting any blood, even the tiniest speck, in the saliva samples can massively increase the results.

The amount of cortisol in blood is naturally many, many times higher than is found in saliva.

So, if your gums bleed, then your saliva cortisol results might not be accurate. (One thing I've found that stops gums bleeding very quickly is vitamin C supplementation.)

If you suspect blood specks might be getting into your saliva samples then you could do a urinary cortisol test. It tells you the (free) cortisol you excrete in 24 hours, but obviously tells you nothing about the circadian rhythm of your cortisol output.

You'd have to do research into what you might gain from doing the urine test. I've never read of anyone on thyroid forums doing it, nor have I done it myself.

medichecks.com/cortisol-tes...

Don't forget you can get 20% off all tests from medichecks throughout October by using the MED99 discount code :

healthunlocked.com/thyroidu...

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Hi, I don't think there would be any blood in my saliva, my gums are not bleeding, but you never know? I spoke to my GP about the result this morning and he is going to ask an endocrinologist about it. My GP seems to think its all from anxiety but Ihink that is wrong as my Secretory IgA is 726! Surely anxiety cant make it that high! I think I have inflammation or a bacteria or candida somewhere? What do you think? I wish someone could help my throat is agonyand I can't eat or drink properly!

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I don't think anxiety - even severe anxiety - would give you results as high as yours. But hydrocortisone taken in any form or for any purpose could really screw up your results.

I think you really need to find some other way of managing your piles other than using something containing HC. Have you tried eating more fibre or less fibre or different types of fibre to soften things up and move things on more quickly? There are so many sources of fibre you can try. If you were to try fibre supplements, I would suggest sticking to soluble fibre - it's much kinder to the gut than insoluble fibre.

For help on dietary fibre see this article from wikipedia. Someone has really gone to town on it since I last looked at it - it used to be a whole lot shorter!

en.wikipedia.org/wiki/Dieta...

You really need the help of an interested endocrinologist (if there is such a thing).

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Yes, I agree I need the help of an endocrinologist, I'm just worried that a NHS endo won't take saliva test results seriously! I am really suffering and getting worse, all the GP does is insist its anxiety, well if his throat was swelling up and so sore it feels like its bleeding with ears that are painful and screaming with tinnitus everyday and night for 9 months he'd be anxious! But that's not what caused it, all this happened after a stomach bug I caught after christmas. I just feel I have never got over it, and funnily enough other people who had it are still having acid reflux although not as bad as me, I think we all have a bacteria that amoxicillin which we all took didn't and couldn't kill it!

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After receiving cortisol saliva results which were through the roof, i have now tested my thyroid and received these results (I couldn't upload a picture so had to copy / paste) can someone help me understand them please?

ENDOCRINOLOGY

Thyroid Function

THYROID STIMULATING HORMONE 3.37 mIU/L

FREE THYROXINE 12.700 pmol/L

FREE T3 4.38 pmol/L

THYROGLOBULIN ANTIBODY <10 IU/mL

THYROID PEROXIDASE ANTIBODIES <9.0 IU/mL

HAEMATOLOGY

Vitamins

ACTIVE B12 77.300 pmol/L

FOLATE (SERUM) 13.51 ug/L

25 OH VITAMIN D *37.3 nmol/L

BIOCHEMISTRY

Inflammation Marker

CRP - HIGH SENSITIVITY 0.17 mg/l

Iron Status

FERRITIN 149 ug/L

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You need to put these on a new post for members to see and comment

Please add ranges too

Obviously your vitamin D is very low

Will add full comments to new post

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Okay, Thank you.

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Okay you need to get an am blood cortisol test done to see what your cortisol levels are, the reference range is usually from 200-590nmol/Ls for the Uk depending on the reference range used by the laboratory doing the testing. If you are on HRT or the pill then this will affect your results. The fact that you are losing weight rather than gaining doesn't suggest Cushing's syndrome as it is virtually impossible to lose weight with Cushing's! An Endocrinologist will do further tests rather than go on the tests you have had done. Using a hydrocortisone suppository for your pies may well have affected the results. Taking large amounts of Hydrocortisone or Prednisilone when you may not need it puts you at huge risk of causing either Cushing's syndrome or secondary adrenal insufficiency where you adrenals glands stop working to produce cortisol because you are supplementing it. however even if you stop taking steroids then your adrenal glands may not start producing cortisol again so you will need to take steroids in order to live - this becomes a life threatening situation. I have a lot of experience with both Cushing's & adrenal insufficiency as I had cushing's (due to a tumour) & am now steroid dependent as I don't make my own cortisol.

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Thank you for your reply. You dont think I am hypothyroid then? I had a blood cortisol test in June, it was 461, the range was 200 - 700. My GP said he knew an endocrinologist friend and he would write to him for advice. When I used to take hydrocortisone at 40mgs a day I never had a saliva cortisol like that! A couple of readings may have been slightly raised but that is all. When I did this latest test I had been using hydrocortisone suppositories but only once a day and not everyday and not when I did the test and they were only over the counter.

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I don't know about the hypothyroid. Your cortisol of 461 if that was done around 8-9am is fine. The reference range they give is for the whole day cortisol levels change throughout the day so they are at the highest levels first thing in the morning 7 then go down during the day. I think wait & see what an am blood cortisol comes back as & go from there.

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I read your post from last month regarding sore throat, normal findings with endoscopy, tinnitus (ringing ears), no heartburn, burping, stomach pain sometimes, and hypersensitivity to chemicals/scents.

Your symptoms are 100% like mine! The burping is less that it was when this started 9 months ago, but now my throat and nose burn like crazy. It's such an awful feeling. I, too, am having issues eating because of this.

This is a tough condition and no one understands us when we describe it. Also, many doctors don't seem particularly knowledgeable about LPR reflux. I'm waiting to schedule a 24-hour pH impedance test to confirm this. Apparently the lower & upper esophageal sphincters are loose, which results in acid/pepsin/bile getting into the throat & larynx area. (I have burning in my nose now, too.) Not fun...my heart goes out to you.

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Thank god you have got in touch with me, I feel so alone with this! I have been wondering if all this could be lack of digestive enzymes? Have you pursued that route at all? At the moment I am existing on porridge and rice pudding as my throat is so bad I can hardly swallow! Even water swells it so I can't drink it! Its ridiculous1 I have no life at all and weigh only 6 stone now and GP cannot help me at all. Gastro found nothing wrong on endoscopy and sigmoidoscopy and signed me off saying I'm fine, but I am so not!

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