Adrenal saliva test back- cortisol high all day- what does this mean??

Hello again, I have just had my saliva cortisol test results back. I was expecting it to show low functioning adrenals/low cortisol. The results show the opposite of this. I'm really quite worried as all 4 show high out of range throughout the day. What does this mean? I'm currently on no medication other than some vitamin supplements. I will post the results below and would appreciate any help/suggestions as to what is going on.I have also included my first post underneath it as it explains how I came to do this test. Results are as follows:

Reference Range (nmol/L)

Sample 1 Post Awakening 34.49 H range: 7.45-32.56

Sample 2 (+ 4 - 5 Hours) 16.26 H range: 2.76-11.31

Sample 3 (+ 4 - 5 Hours) 16.82 H range: 1.38-7.45

Sample 4 (Prior to Sleep) 5.70 H 0.83-3.86

Sum cortisol 73.3

DHEA Mean: 0.93

DHEA cortisol ratio: 0.033

Hi all, I'm new to all this so please bear with me! Apologies it's a bit long! A bit of background info might be helpful (or not!)I an female , 42 years old . My mum and my sister are hypothyroid.I have been very ill for approx 2 years. It began when I was hospitalized in 2014 for 4 weeks with a serious kidney infection and sepsis . When I left hospital I was unable to walk or eat. I believed (was told) that I would slowly get better with time. I continued with these symptoms along with nausea, dizzyness, hair loss for the next 6 months. I lost 4 stone in weight and was unable to work for the whole year due to chronic fatigue. Anyway I have improved in terms of being to eat again, but lots of symptoms persist including chronic fatigue, dizzyness, brain fog, dry skin, 4 stone weight gain, constipation, cold feet, low body temp, leg weakness. After 6 months of not recovering I was diagnosed with M.E. as they said they had tested me for everything else and all results were in the normal range. Stupidly it didn't occur to me ask what these ranges were.I am now barely functioning and am about to lose my job (and a 20 year career)due to absence.Having done some research and chatting with my mum it occurred to me I have many hypothyroid symptoms (and maybe adrenal insufficiency-I'm waiting for results on the saliva test) so i had blood tests done by horizon-Any advice/interpreting would be helpful . Many thanks.

Biochemistry CRP H 6.40 Range <5.0 mg/L

Ferritin 88.9 range 20 - 150 ug/L

Thyroid Function TSH 1.06 range:0.27 - 4.20 IU/L

T4 Total 130.8 range 64.5 - 142.0 nmol/L

Free T4 21.58 range 12 - 22 pmol/L

Free T3 4.25 range 3.1 - 6.8 pmol/L

Immunology Anti-Thyroidperoxidase abs 8.5 range <34 kIU/L

Anti-Thyroglobulin Abs 11.3 range <115 kU/L

Vitamin B12 374 Deficient <140 pmol/L Insufficient 140 - 250 Consider reducing dose >725

Serum Folate 29.29 10.4 - 42.4 nmol/L

13 Replies

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  • OkI'm not an expert but have Cushing's disease, it's looks like you are not adrenal insufficient but rather the opposite with Cushing's, you have a lot of symptoms for that, including the rapid weight gain. Your original symptoms of weight loss point towards insufficiency but it sounds as though your body has gone into overdrive. Do you have a round face which has got bigger, is it red? What is your blood pressure like? Have a google of Cushing's, to see if you have the symptoms. So many doctors are not informed enough about this "rare" condition so label you as a secret eater or like you diagnose ME - which really means they have no idea! If you are on Facebook there is a Cushing's UK group also there are Addison groups. These may help & support you.

  • Hi Paulines thank you so much for your reply. I was just really shocked it's high- I was convinced it was low. Yes face is rounder and often red (look like Iv been drinking-but don't drink these days). I have looked at Cushing's symptoms and i have many including weight gain, purple stretch marks, fatigue, muscle weakness, increased trips to loo, borderline blood pressure, headaches , the list goes on....question is how do I tackle this with a doctor?If they see these results would they automatically test for Cushings, or would they just dismiss them?Having been diagnosed with it how do you deal with it?. Thanks xxx

  • Forgot to say that I thought high cortisol was due to anxiety/stress. I wouldn't consider myself particularly stressed just seriously pi**ed off that all tests seem to come back normal and I'm no further forward than I was 2 years ago.

  • Who did the saliva tests for you. The fact that your sister has a genetic condition should make them take you seriously. Do you have photos of the difference in weight gain especially in your face? You have to be "pushy" with the doctors, sometimes the younger doctors are better as they aren't long out of training so will remember it better than other older doctors! Good luck!

  • It was done by Genova diagnostics-have lots of before photos-tend to avoid cameras these days. Got appointment with doc a week on Monday so will be pushy. Forgot to ask how high do your cortisol levels have to be to get a Cushings diagnosis?x

  • I think that in Cushing's the graph would be close to being a high level horizontal straight line, and yours isn't that bad yet, although it is bad enough.

    Can you see a reference range for DHEA anywhere on the page of results? Is it 0.25 - 2.22 ? Assuming that is the reference range then middle of the range would be approx 1.25 and yours is lower than that.

    Look at this page

    stopthethyroidmadness.com/s...

    and take a bit of time to work out what you are looking at. The ideal results would have your salivary cortisol line between the two dashed lines with pluses.

    Your cortisol is way over that though, and your DHEA may be in range but it is in the lower half of the range.

    I would suggest your results most closely resemble Stage 3 - Maladaption Phase 1. What might happen at any time is your adrenals give up the ghost and cortisol levels start dropping into your boots.

    You might get some ideas of what your options are if you read all of this thread :

    healthunlocked.com/thyroidu...

    Good luck. High cortisol is awful and is very stubborn. I believe that it is easier to raise low cortisol than it is to lower high cortisol.

    By the way, I still think you should see your doctor about your results but don't be surprised if they dismiss you totally and tell you saliva tests are rubbish. If they do, you could put a copy of this under their noses :

    nhs.uk/Conditions/Cushings-...

    Also on that link, look at the two External Links on the right of the page. Go to each of them and do a search for "saliva". Both sites mention it as a valid test and you may want to print some of the info out. Show that to your doctor as well if they choose to scoff at your test results.

  • Hi Human bean, thank you for all your help.

    I forgot the DHEA ref range in previous post-its :

    DHEA Sample 1 (am) 1.14 (0.25-2.22

    )

    Sum of Cortisol

    DHEA Sample 3 (pm) 0.71 (0.25-2.22)

    Will research as much as I can before docs appointment and get my ducks in a row. Fingers crossed he will investigate why it is so high:)

  • With all your symptoms plus you're sister's history & the fact that your results are outside of the normal range they should test you! The biggest problem is getting to accept the labs findings. They should do other tests as well, an early morning cortisol, 24 hour urine; a low dose Dexamethasone & high dose Dexamethasone blood tests. It's a long slow journey once they decide to test a they want to make sure they know where the source of the excess cortisol is.

  • Have read back through my cortisol results today -although cortisol is high all day, the DHEA cortisol ratio is in range 0.033(range 0.015-0.50). Can you have Cushings if this is the case?In my notes it says "The ratio of DHEA to cortisol is normal. This ratio indicates a relative balance of the adrenal output of androgens and

    cortisol. Both of the hormones are released in response to ACTH from the pituitary and a normal ratio indicates a balanced function of the hypothalamic-pituitary-adrenal axis." I have no idea what this means?? Any ideas??

  • I don't know but I do think it's worth pursuing on account of your symptoms & your sister's history!

  • Your cortisol is high, but not high enough to raise the spectre of Cushings. With Cushings the most noticeable thing in the weight gain is that it is centred around the middle of the body - like a balloon with stick limbs. And Geneova's testing is regarded as really reliable.

    My curve looked very much like yours, except that I was high in the morning too, and my levels were similar. My main problem was sleep, and the fact that I was, and still am, totally unable to deal with the slightest stress. Its particularly bad with some sudden shock, like a near miss in the car, and then I am a wreck for the rest of the day. I haven't re-tested, because I don't think it would make any difference to how I manage my situation.

    I am back on ARD and losing slowly. This is 'The Adrenal Reset Diet' by Alan Christianson.

    Just losing sleep is enough to make you ill and gain weight. And that was my main problem. On the rare days that I slept properly I would feel fantastic. Its early days yet, but the thing that seems to have made the most difference to me is dealing with Candida and parasites. Until I dealt with the Candida I couldn't keep away from the sugar and carbs. But dealing with the candida has also helped with sleep (and fatigue, brain fog, motivation) - none of which I was expecting.

    Your thyroid numbers don't look too bad - did you have the test done early in the morning? However your free T3, while in range, could be higher and it might (but only might) indicate that you aren't a good converter. I don't suppose you have historical thyroid tests by any chance? Recent research has shown that we all have a natural thyroid set point, with some of us just running higher than others. At the moment those results don't look low enough to justify supplementation, and nor do they look low enough to explain your illness.

    Have they tested blood sugar and Hba1c?

    To be fair to the doctors, ME is not an unreasonable diagnosis in your case. The annoying thing is the way they use it to get rid of patients that don't have anything obvious wrong with them. But there most certainly is a syndrome of fatigue following illness, even when the original illness is resolved. However, they should be offering you CBT if that is what you have, because it really has been shown to be effective. Having lived with someone with ME, I know that psychological intervention can make a huge difference, even though there is nothing obviously 'wrong' to start with. And at the very least it teaches you some strategies for dealing with your condition.

  • Hi Ruthie thanks for that. I'm quite happy if it isn't Cushings- read a bit about it this morning and it doesn't make happy reading. I have put weight on around the middle but then I have put it on all over!!

    The weird thing is I don't feel particularly stressed and have always been good with stress management. I eat carefully and meditate which I find helps. I suppose over time I have come to terms with this new "normal". I don't have too many problems sleeping either, although regardless how much I sleep I am permanently knackered! I will have a look at the ARD diet -I haven't heard of it . When you say you dealt with candida and parasites how did you find out this was the problem and what did you do? I avoid sugar and don't eat a diet heavy in carbs so could I still have candida?

    I'm having a 24hr urine thyroid test done to check T4-T3 ratio. The only historical thyroid levels I have are TSH ones-anything I posted on here has been done privately.

    TSH below

    09 Jun 10Serum TSH level2.01 mu/L0.35 - 5.5mu/L

    06 Jan 11Serum TSH level1.37 mu/L0.35 - 5.5mu/L

    04 Feb 15Serum TSH level2.16 mu/L0.35 - 5.5mu/L

    09 Nov 15Serum TSH level0.88 mu/L0.35 - 5.5mu/L

    23 Mar 16Serum TSH level1.74 mu/L0.35 - 5.5mu/L

    27 Sep 16Serum TSH level1.65 mu/L0.35 - 5.5mu/L

    Blood sugar has been checked -usually on admission to hospital-hasn't shown up anything. I have had CBT but can honestly say I didn't find it too useful.

  • I came to parasites because I was suffering from TMJ (jaw clenching) and it was suggested that it might be linked to parasites, so I bought a herbal parasite cleanse. I had mild die-off symptoms, and nothing much interesting came out, but my TMJ is almost gone. However my sugar cravings, which I have had for a long time, went wild and more googling led me to candida (which I had known about, but ignored). Here's the link to my story

    healthunlocked.com/thyroidu...

    So now i am most of the way through a candida cleanse, and my sugar cravings are down to normal most of the time - ie I can resist even my son't home baking, but it does take some resisting. And I am sleeping better, less brain fogged, more energetic and motivated.

    I don't know enough about Candida, but suspect that diet alone can't eradicate it, although it probably can control it. Oh, and the stool tests are notoriously unreliable.

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