Cushing's Info

I hope my story will help some of you understand what symptoms you might face and how to seek medical attention--go to those with EXPERIENCE!

In May of 2003 I graduated from college with a degree in computer engineering and a commission in the United States Army Reserve as a 2nd Lieutenant.  I was in great shape and scored the maximum score on the physical fitness test. My cholestoral and blood pressure often tested high in Army physicals and I was given warning. After graduation, I began work as an engineer and put on a few pounds.  This seemed fine because I was no longer in Army ROTC and excersized as often.  Over the next few years insomnia set in, 4 to 0 hours of sleep (Benedryl helped with this).  At work, my arms would become numb from leaning against my desk.  Later, I noticed a numb, twitchy area on my face that seemed to grow.  Additionally, I began to form a huge moon face and buffallo hump back.  This caused much anxiety as I was horrified by being so ugly.  Dizzyness, lack of coordination, and a fainting spell or two occured.  Although It's hard to admit, my personality and cognitive abilities probably suffered too.  I began to tell my friends I was just getting older and feeling older.  I'd lose hair and it wouldn't grow back.  My skin began to hurt when manipulated. No longer able to pass the physical fitness standards for the Army, I was medically dischaged.

At a family reunion, my mother complained to my uncle (an MD and family practitioner) about my moon face.  He noted that it was characteristic of Cushing's disease with the rest of my body being relatively thin.  He suggested I go to my physician for a cortizol test as soon as possible.  Since I was thinking I felt OK most of the time and work was just so busy, I neglected to do this for about 6 months.  Yep, it was a big mistake.

Finally, I began to have so many shaking and weakness episodes, I saw my regular MD and got a cortizol blood test.  It was really high.  Soon afterward, the symptoms were taking me down fast.  My libido vanished (my poor wife) and nothing would make me feel happy.  My brain was always in a dismal fog.  Blood sampling and blood pressure cuffs were causing dark bruises.  I drew up a list of about 25 symptoms of classic Cushing's syndrome.  I hated it and wanted to move fast to fix it.

My Endocrinologist ordered up a dexamethesone suppression test that suggested a pituitary source.  I was refered to a nurosergeon who could not see me for about a month.  No way! I felt I'd die sooner than that (I was starting to have a hard time swallowing food)  I elected to get into the first nuerosurgeon who would take me, a young guy just out of school who had never treated Cushing's before.  A few weeks later, I had an MRI.  No tumor found.  I had a petrosal sinus sampling that determined an ACTH producing adenoma likely on the right side of my pituitary.  This surprised the surgeon and the radiologist who suspected the left side.  I had another MRI, but the results revealed nothing to them.  I was so eager to move on, I had the young inexperienced surgeon go into my pituitary to find this mysterious adenoma.  I knew there would be a chance of failure under these circumstances and that's just what happened.  Only healthy tissue was removed.

After this first surgery March 26, 2009, I suffered severe panic attacks, diabetes insipitus, high blood sugar, hot flashes, and emotional swings in the hospital for about 5 days.  Recovery was horrible. The neurosurgeon ordered up another MRI.  Fortunately, the healthy tissue he removed revealed a dense area that he and the radiologist suspected was the missed target.  In fact, going back to the original MRI, you can see evidence of it, but it isn't very obvious at all.  Anyway, they offered to try again, but my wife decided we needed an experienced surgeon who would more likely be successful for the second attempt.  We went to UC San Fransisco, one of the few Cushing's specialists in the nation.

Strangely, the surgeons there disagreed about whether the post operative MRI revealed a likely location for my adenoma.  Besides the uncertainty, I did like that they named other places I could go for treatment, but they did suggest I don't try another inexperienced surgeon when it comes to these search-and-destroy surgeries.  I chose them, but since I'm not the only Cushing's disease patient screaming for help, I'd have to wait for this surgery.

While waiting and doing my own research, I came accross a drug called Ketoconazole that's often used to treat Cushings disease in dogs and had mixed results in people, expecially failing in men.  I told my endocrinologist I wanted to try it and showed him the research.  It worked!  My Cortizol was brought down to almost normal levels, and that was at the lowest dose.  If the second surgery failed, I had a good plan B.

I took Ketoconazole for 3 weeks before my final surgery.  I noticed sudden improvement loosing that strange fog in my head, sleeing OK, and a return of libido, and most symptoms began to slowly retreat.  When I went for surgery at UC San Fransisco June 2nd, 2009, they used a procedure that kept me hospitalized for only one day.  I had none of the previous surgery's problems except for headache and nausea.  I discontinued Ketoconazole and slept like a baby without Benedryl.

Since then, I've been watching my body return to age 30.  My hair is growing back, cholestorol and blood pressure are normal, appetite decreased, and I'm loosing weight withouth exercise.  I have not execised much because I've developed some strange cortizol withdrawl symptoms to include severe joint pain and hot restless legs at night.  I've kept these under control with cortisol replacement drugs.  Hopefully, I'll be off of these whith the 6-18 month recovery time others claim.  Oh, and I love the fact I'm starting to look normal again within about 3 months.  I'm enjoying life so much better now being able to physically do what I want.

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Listen to Jon's interview September 17, 2009