From the Message Boards:
My GP has suspected Cushings for a while now. I have the extreme fatigue, muscle weakness, round face, facial flushing, Buffalo hump, weight gain right in midsection – all the alleged tale-tell signs. However, I’ve had to urine tests and one blood test and they are always normal.
I’m seeing a third endo now and she agrees with my GP and plans to do another series of blood tests.
I guess my question is has anyone else out there ever had initial normal cortisol test results only to later find out it’s Cushings?
Please comment here and I will get your answers to Lizzy or on the boards directly.
Thanks!
I had the same symptoms mentioned and an MRI confirmed a 5mm pituitary tumor and still had varying tests-normal then elevated. Endocrinologists (military) had to run tests for six months. He then requested Inferior Petrosal Sinus Sampling and levels were off the chart. Then finally diagnosed as Cushing’s disease.
I have a confirmed Cushing’s recurrence but have had two 24 hour urine cortisol tests that come back normal because of my diet. Are you on a diet when taking the tests?
From Facebook:
I have normal
Quite often as I was diagnosed cyclical Cushings. Had surgery 4 years ago and am back to testing again. I did get a high 24hr but need more to confirm they say.
Also from Facebook
It took me 2 years to confirm!!!!
Another 3 from Facebook
Meeee! I had the surgery was great for a year. Then slowly symptoms returned… all test negative and finally 3 years post surgery and full Cushing symptoms I have a new tumor. Why don’t they believe us! We know what we feel!!
It took me 2 years to confirm!!!!
I have normal
Quite often as I was diagnosed cyclical Cushings. Had surgery 4 years ago and am back to testing again. I did get a high 24hr but need more to confirm they say.