Cortisol testing

Cortisol testing

Hi all,

I had my cortisol tested with Genova in January, a 24 hour saliva. All 4 results came back slightly over range. Ever since I have been very worried I have cushings disease. My gp has told me to repeat the test to reassure myself or he can refer me to an endo for the 24 hour urine but I'm too afraid to do that.

I suffer from an under active thyroid and I've been on Levo almost a year. I'm up to 75mg so far. Since being on Levo my face has been quite puffy and red. Again cushings symptoms so I've become obsessed checking my face and colour. I suffer from anxiety too and stress as I have ptsd.

I was told by Genova my test in January looked like a stress profile and my gp seems more worried it could have dropped low now.

The reason I worry about cushings is the face a bit puffy and red. My periods have lightened to barely anything (since Levo too). I've got acne on face and chest but I have always had adult acne. Only thing reassuring me is I don't have any rapid weight gain and no hump on my back. I also still have awful chronic fatigue the last year despite on Levo and tsh has dropped to 1.7 from 9.28 and ft4 is almost 20 and ft3 5. All a good level in range. I am sensitive to bright lights they make me feel very unreal and woozy. Woozy giddy feeling in head as I walk, had that over a year and gp done some tests and puts it down to anxiety. I just feel I have a lot of head and eye symptoms due to the bad fatigue I have in my head and eyes. The fatigue is what prompted tests 18 months back.

I want to repeat my cortisol but I'm not sure which was is most accurate. 9am bloods? Saliva or 24 hour urine? I can test these private myself but would like advice on which to use.

Thank you

Julie

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7 Replies

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  • Blood is simple way to rule out cushing. If it's not high then it's not cushing. You need that bloodtest anyway if your saliva test comes back high.

    Tho. As you are afraid of getting your blood drawn it will probably affect the level of cortisol which can shoot high just because one if afraid of needles.

    Mine was slightly over the range as I was nervous of getting 16 tubes drawn lol. My doctor agreed a bit high cortisol isn't reason to worry as I was nervous.

    You should talk with your GP which he consider would be the best option in your case to get as accurate result as possible.

  • That's what I thought Justina. If I get anxious doing the test cortisol is bound to raise high. Where as doing saliva or urine it be less likely to raise.

    My gp just said do blood but I know I'd get very anxious.

    Thank you for replying.

  • Oh ok he doesn't get the problem then.

    Well urine test is the best option as saliva cortisol alone can't be used to diagnose cushing.

  • Jingyd35

    You don't have Cushings!

    Yes, they are a bit over range – but that test looks almost perfect...ish.

    The morning cortisol reading [sample 1] - is hardly out of range, then the sweep down during the rest day shows that your body is clearing the cortisol - as it is supposed to.

    If you had Cushings, the numbers would be much higher and remain elevated throughout the day [i.e. samples 2, 3 and 4 as well].

    4th sample / late bedtime is over-range, but not scarily so.

    You could try some simple lifestyle changes to reduce stress and over-stimulation, and try to make time to wind down much earlier in the evening before you go to bed / and go to bed earlier.

    e.g. have a relaxing bubble bath; switch off your computer / phone. Don't eat too late or too heavily; no caffeine [I'd give up caffeine altogether], alcohol. Avoid 'toxic' people, situations etc.

    There's a whole science to sleep in itself.

    A good night' sleep is really important for your / everyone's health, even more so if you have anxiety and ptsd. Keep to regular sleep patterns [bedtimes and risings].

    Sleeping in total darkness is also healthier [light stimulates cortisol production].

    The body has a lymph system that carries away toxins from your body, but not the brain. The brain has its own separate lymph system that washes out its own waste materials / toxins, this is carried out during uninterrupted and restful sleep.

    During sleep, your brain also manufactures certain hormones for growth and repair while others need to be degraded.

    theconversation.com/chemica...

    newscientist.com/article/dn...

    That's every night's sleep.

    If it was me, I'd try 100mcgs to see if that alleviates the woozy giddy feeling. [possibly 125 or even 125/100 alternate days to see if this helps].

    Just to check - perhaps a blood glucose level test and also an Hbac1 test – similar to the blood glucose test...but different. You could ask your GP for these.

    Do you do a lot of computer work? The sensitivity to bright lights might be eye muscle strain from staring at a computer screen while also being indoors too much [...then pasted more www links for you above!].

    Think of any practical things you can do to reduce stress levels - stress raises your cortisol levels. Unwind with good music, good company, go dancing, a favourite film, a walk in the park, a swim...

    J

    p.s.

    Rather than retest with a 24 urine test, an overnight Dexamethasone suppression test is easier – you pop a pill and have a blood test the morning after.

    But you don't need to, as you don't have Cushings. [I'm not a medic]

  • Thank you so much for your reply.

    So reassuring. I've been worried as I've had crippling fatigue for a year. Yes I do have hypothyroidism but my chronic fatigue doesn't lift. My fave is puffy in the cheeks and jawline which started after on Levo. My skin colour changed from pale to light red/orange. Bad spots on fave and chest, periods really lightened since on Levo... I was worried I had a cushings fave and symptoms so I did the saliva test. It's reassuring you say it's not that high because I did hat test during a very stressful time.

    I have SADs and I get very bad anxiety and depression every winter the last 5 years. Since my brother attacked me and winter always seems to be a low time for me. So I was just coming out of a bad time when I did the saliva test in January this year. I imagine my cortisol was high during a SADs period and my anxiety so high.

    I'm now much calmer and relaxed despite my health worries. I do have ptsd and anxiety but they're doing well with therapy and I'm currently weaning off my anti depressant I've been on for 4 years.

    I had a full blood test in March. Hba1c was checked last year and it was 36, this time 34. So all ok there.

    My full bloods though showed my neutrophils count as a little low at 1.6 (range 2-7.5) I re tested 2 weeks ago and it had gone up to 1.79. My lymphocytes were 3.98 in march (range 1-3.65) and 2 weeks ago had risen to 4.45. Gp isn't worried about the lymphocytes but says he's worried about my neutrophils. My total white cell count and rest of fbc is fine. It's set my anxiety worrying I've cancer or something if he's written to a haemotologist for advice. He says he doubts they'll want to see me but he's written to ask. I explained I've awful acne on my chin as he knows I suffer cystic acne, and in the last I've had low neutrophils when my acne has been bad but he said my neutrophils have been fine for years so he wants to double check with a specialist.

    So I've some raised anxiety at the moment. I have agoraphobia agin the last year since my health issues began. The ill health re triggered my ptsd and with it the agoraphobia and anxiety. I experienced it in 2013 after the attack but overcame it within a year but all of it returned so referrals to a hospital scare me as I am still working on my anxiety and getting to appointments. My gp comes to my house because my anxiety was too high attempting them due to ill health last year. It's been a nightmare and it's effected me getting out with my family. The fatigue caused so many problems in my life

    I have therapy, do gentle yoga, meditation, I like to read and I have had to work on cutting out toxic family. I was still making myself see my mum and sisters since my brother attacked me as I thought I had to. I'd been rejected by them as I'd not forgive my brother, and alienated but they would ask to see my children so I'd allow my mum and sisters to visit which cauSed me severe anxiety and last year I experienced crashes like you'd have with cfs. They'd happen after every visit from my mum and sisters, I'd be bed ridden for days with weakness and crippling fatigue and anxiety. This year I've put a stop to it and I've refused any visits from them but I've encouraged my mum to still see my children at her house or neutral place so that I can avoid emotional pain. She's rejected me since the attack and refused to support me with my health issues so seeing her causes me so much pain and anxiety. I'm finally brave enough to do what's right for me and my health. Maybe that'll help my results.

    Your advice has been great. Thank you so much.

    Julie

  • Higher levels of cortisol and low thyroid often go together. If you drink coffee that will increase cortisol as will sugar.

  • Thank you.

    I little a low sugar diet I'd say and I don't drink coffee.

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