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