Cushing's Info

For years I've had extreme anxiety... my body trembles, I have heart palpatations, and I sweat like crazy b/c of my nerves.  I've been on anti-anxiety and andi-depressants for the past 15 years (increasing dosage each time I go in for a check-up).  Add in Xanax for the past 7 years and Ambien CR for the past 5 years; I should be a walking zombie.  But I'm still a nervous wreck to the point that I've lost several pesonal relationships and almost my job.  I can't concentrate, my memory is about that of an 80 year old, and I get fired up over things for no reason at the strangest times.  It feels like an electric current of energy is running through me that I can't turn off no matte what stress management technique I try.  I haven't slept a full night's sleep for the past 8 or 9 years; even with Ambien.  I'm exhausted!

No one figured out what was wrong with me until I mentioned to my doctor that I gained 40 pounds in 7 months (awesome that he didnt notice that on his own!).  FINALLY someone checked my cortisol.  It was through the roof.; 3 times the top number of the high range.  My regular doctor checked it about 10 times before sending me to an endocronologist.  This was the best part.... this doctor told me that I seemed like a nice person, but probably needed some serious psychotherapy.  Oh, and here's a prescription for phentermine.  What doctor in their right mind gives an anxious person an upper?????????  Any idiot with access to WebMD knows better than that. I went to several other doctors who all said I had really really really high cortisol, but didnt know why.  I had CAT scans, MRI's and sonograms... no tumors on my andrenal or pititutary glands.  Although I have  a tumor on my pineal gland since I was a child.  My doctor doesnt think its related... but I find it weird that its not.

These pointless and frusterating doctor visits went on for 6 months until I found a really great doctor who did the full gammet of tests on me.  She diagnosed me with Cushings, but can't find the cause.  Unfortunately, I can't find an endocronologist in my area who can treat me.  The crazy doctor who gave me "fat pills" is a part of the largest Endocronology group in Jacksonville, and I refuse to go back there.  The doctor who ran all the tests on me was an OB/GYN; so she can't help.  I tried to get approval from my insurance to go to Mayo Clinic b/c there is a specialist there, but I can't get approval.

So, now I know I have Cushings, I have $20,000 worth of tests all showing whats wrong with me...... and noone to help me.  I am so frusterated!!  I'm mad that I wasted my 20's fat and stressed out and all along there was a biological reason for it.  How could so many doctors miss this for so long?  I started doing extreme bootcamp to lose weight and lost about 20 pounds.  The problem is that every time I work out... it triggers my adrenaline, ACTH, and cortisol.  After working out I start crying and have a panic attack for a few hours until all my chemicals get under control.  My doctor suggested I stop working out b/c its making things worse.

What can doctors do for someone with Cushing's that isnt' caused by a tumor?  Will I ever get to stop taking anti-anxiety and sleeping medications?  Will I ever stop feeling crazy?