A recent Cushings Board post, I kind of like the analogy, so I am sharing here:
The problem lies "in the nature of the beast". I love the Michigan Frog analogy I read yesterday, where the frog performs when no one is LOOKING. In my 16 years from initial symptom, it was rarely the same symptom twice. Even when there were multiple symptoms, you couldn't tell when they would be consistantly active.
Our little beast, will lie dormant for a long while, then awake & growl, take a turn out of it's lair, then come back in and lie down for another nap. This is when we have the "occasional" symptom. After a long while, it'll get hungry and decide to awake and feast. This is when we have the multiple and escalating symptoms. But you gotta catch the beast WHEN IT IS AWAKE, to get those positive test results.
You have to be like the hunter. Waiting, watching, taking notes of the beast's activities. The waiting is the hardest part. You have to be ready to get a picture of the beast, when it finally leaves it's lair, which is also very hard, because it is highly camouflaged. This is a thing to be studied, with great patience, in order to get the "greatest prize", A DIAGNOSIS!
YOU ARE THE EXPERT when it comes to knowing and studying your own body. NO ONE will ever know it better.
The tests DO work, in time, over time, when the beast is only occasionally awake. It'll leave behind it's spoor, the occasional symptom, but you won't be able to see the beast (test positive), because it is already back in the lair napping again. You have to learn to recognize when it may be preparing to come out again, be ready to take that picture (test) when it is AWAKE.
Most everyone here has been working on studying "the beast" and have become pretty proficient at it. I am amazed by all the clinical detail I still don't quite understand, because my testing was less than 3 months when my surgery was set. I got the generic interpreted results from my endo, not all the lovely detail they go into here. And they have been doing it for a while.... those diaries must be getting pretty full, and file folders of lab results? I am impressed.
The newbies just gotta learn to be patient. While the internet was new, and I was searching for my "package" of symptoms, I was usually led toward menopause. Most of my stuff filled that list nicely, but I was only 30 something and I wasn't buying into that one yet. I didn't even HEAR of Cushings until 15+ years into my search.
So if YOU SUSPECT you have Cushings, you're in for a long bumpy ride. It is NOT A QUICK FIX, until it is VERY LATE in the process, like mine was. It WILL WEAR YOU DOWN, emotionally and physically. IF YOU DO have the ACTH producer, the cortisol will push your limits of endurance.
For All.... God Bless you in your search for answers. May He give you strength to endure what MUST be done, and Rest for the weary.