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High cortisol result

Discussion in 'General ME/CFS Discussion' started by Jemima37, Jun 8, 2017.

  1. Jemima37

    Jemima37 Senior Member

    Has anyone had high blood cortisol results?

    I had a saliva test in January and all 4 samples were slightly elevated but my GP wasn't worried. I have an underactive thyroid but it's within range now I am on thyroxine the last 13 months. I do have PTSD and agoraphobia as a result of being attacked in 2012 but that was all better until my ill health began 18 months ago, when i started with chronic fatigue, crashes and weakness. My GP a few times suggested CFS but now won't diagnose or refer me to be diagnosed as he doesn't believe CFS is a proper diagnosis, he says it's just a diagnosis of exclusion so we have to keep repeating all my tests time and time again with no further answers and at 37 I am still unwell with daily fatigue, weak thighs, crashes etc...

    I had a private test for my thyoid as usual every 3 months so added cortisol on as my GP wanted morning cortisol but I can't get to the clinic and he can't come here before 9am to take my blood so I did it private. It came in today very high and it's sent me terrified as it suggests cushings disease. The range was up to 537 and mine was 1192.

    I am now terrified to even send the results to my GP, I don't know how I will cope going ot a hospital, let alone needing MRI, brain surgery etc... I feel my world has fallen apart this morning and all my fears coming true as I have been worried it was something serious for a long time with how fatigued I am, but hoped it was CFS (wrong I hoped that but I did over anything like a brain tumour).

    Has anyone experienced such high cortisol?

    lauluce likes this.
  2. KME


    First can I say that I'm so sorry you were attacked in 2012 and suffer from PTSD and agoraphobia. My understanding is that elevated cortisol could be explained by your existing conditions of PTSD and agoraphobia. It sounds like anxiety has taken over today (I hope you don't mind me saying that), and that is enough, by itself, to raise cortisol. I think the most likely outcome is that your elevated cortisol is explained by your existing conditions, and you won't need to do anything, or worry about anything like Cushing's disease. The sooner you talk with your GP, the sooner your fears can be allayed or dealt with.

    If you have a professional who you find helpful for managing your PTSD, it may be helpful to talk with them too, as they will be familiar with elevated cortisol, and may be able to set your mind at ease. An elevated cortisol finding in a blood test is only one of many other signs and symptoms that would need to be present for a diagnosis of Cushing's to be considered. Talk to your GP. Rather than being a cause for worry, your elevated cortisol level may be the result of worry/anxiety/stress/trauma, and you may be able to get more help for that.
    TenuousGrip likes this.
  3. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    Most GPs don't know how to diagnose Cushing's properly since they rarely see it. You're best in the hands of an endocrinologist who will do the proper workup which will likely include a 24-hour urine collection for cortisol or 2 midnight saliva collections. They will also do the physical exam to look for things to check for Cushing's.

    I would recommend taking whatever steps necessary to secure a referral to an endocrinologist.
    belize44 likes this.
  4. lauluce

    lauluce as long as you manage to stay alive, there's hope

    I'm to tired now to elaborete, but your doctor ahoul look for adrenal gland tumours and if found, give you a test to determine if the tumour is the source of the high cortisol. I recently took a ct scan that found an anonaly on one of my adrenals, and I too have high cortisol
    here is my post on the issue.:

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