noobie - just got cortisol blood test results

Posted , 5 users are following.

Hi everyone, 

After being sick for the last 3 years, I paid to have some very expensive blood tests done since the NHS were not willing. I have a history of constant headaches/migraines everyday, extreme fatigue, loss of feeling in some of my extremities, as well as a myriad of loads of other symptoms too long to bore you with. 

I was told my cortisol blood levels were high at 9am at 655 with the specific range given by the lab as 166 - 507

Does this look abnormally high? I have to say the only stress in my life is being chronically unwell and I don't think i was particularly stressed that early in the morning when I had this done. Also I am not on and haven't been on any kind of medication around that time or within a year and a half of it. 

Did any of your GP's follow through either with more tests or a referral to an Endo after a result like this? Or did you get dismissed?

I'm under a new Neuro team i am meeting on Monday after being handed around different places because no one could figure out these constant extreme headaches every day. 

Any advice or experience would be so appreciated.

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4 Replies

  • Posted

    I am in the same boat as you I have been ill for years I no long go out as I feel so unwell and I trouble walking.. I was diagnosed with Parkinson’s and treated for a year then told I didn’t have Parkinson’s then told I had FND  also wrong. I now have a great doctor who said he would help me through my journey and get a diagnosis so feeling more positive.. I had blood test last week waiting for results.. look forward to hearing how you get on.
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  • Posted

    My gp laughed at me and told me I couldn’t have Cushing’s. It was an a&e referral to haematologist and they are the ones that figured out it was Cushing’s. But u will need more than one test done. I done three 24hr urine tests and then blood tests with hydrocortisone and with out etc. But I looked like a Cushing’s patient also with all the random symptoms. The problem they had with me was figuring out where my source was. PET scan confirmed it in the end. U will have quite a process to go through. But fight for it if u have to an if u know u have it. Cause getting some docs to listen is the worst part cause they think it so rare. An it is rare but it’s not that rare. 

    If u have high blood pressure, I can see why u have headaches. But u may need an endocrine referral too? 

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  • Posted

    Wish you all the best with your appointment today will be thinking of you. 
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  • Posted

    Hey

    Im so sorry to hear this. How did the appointment go? What did the doc say?

    I have bilateral adreanl adenomas. Meeting the surgeon tomorrow to see if we can schedule the surgery on wednesday.

    Sending you loads of positive energy.

    Keep me posted.

    xx

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