Monday, June 21, 2010

Phil's journey with Cushing's Disease (a guest post)

by Philip Butler

Just thought that I'd provide a little synopsis and timeline of my journey with Cushing's disease.

I have suffered from terrible cluster/migraine headaches since early childhood. Satanic type pain that made me pound my head on the floor or walls. Many times I prayed for death to end the pain. Thankfully I never moved to end it all and now, post-pituitary surgery I have not had much more than sinus or allergy related headaches. Terrible and painful in their own right, it is really not the same.

During my teen years I was active with some sports, soccer and baseball and motocross. I had trouble with electrolyte deficiency and was under doctors' orders to drink a lot of Gatorade and to not push myself.

Very frustrating to a young guy. I was also always underweight and physically weaker than my peers. This despite trying to work out and eat alot of food to gain weight. It never worked.

Later, as I entered my 20s, the headaches continued and strangely I developed some angry dark purple stretch marks on my inner thighs. Still my doc told me that it was from being physically active, motocross and weekend soccer matches.

I did not begin to gain weight until my middle 30s, I was always a seemingly fit 160lbs and active until some point when I put on 30lbs very rapidly. Initially I was appalled but then felt that it was just time for my body to fill out and truthfully, 190 was a good weight for me. In 1998, while on a scuba trip to Bonaire one of my friends pointed out some little purple stripes on my belly. "what is THAT?!" she asked. I hadn't noticed but there on my little floppy belly ( that was new too ) were purple stretch marks.

I began to gain weight, innocently enough it came a few pounds at a time. At 207lbs I began to feel frustrated. I had been going to a gym for a long while and spent my weekends on my dirtbike logging many miles offroad. Salads and lean meats for lunch and dinner and still the weight came. Frightening to me even more so was the weakness and pain in my legs and lower back.

It may seem that the physical aspects of Cushing's disease are terrible, and they are. But worse for me was the change in emotion. I have always been a happy, outgoing and friendly person who enjoys meeting new people. This changed in a way that frightened me. Suddenly I was angry at friends and could fly into a rage for no reason. I began to dwell on perceived slights or mal-intentions. In my head I would argue and tear people apart. I became very jealous of time that my wife spent with other people and became very distrustful. The rage would come and go and despite trying to be rational ( I knew there was something wrong- I didn't want to be angry ) I had no control over the emotion.

In the spring of 2000, I began a new job and after only a few weeks I became very ill. Low fever, cold sweats and unable to sleep for days at time. My doctor ran a blood test and called it Epstein Barr. I missed 9 weeks of work and lost the new job. Later I learned that it was not EBv but rather it was adrenal insufficiency related to a terrible and "rare" disease.

In 2003 I raced my dirtbike for the last time, I was so weak and a new symptom had arrived. Sweat. Profusely. I would perspire to the point of saturating my clothes. During the 1st lap I was so fatigued and saturated with sweat that I crashed. After regaining my composure, I restarted and rode my bike to a spot in the woods where nobody could see me and I stayed there recovering for well over an hour.

The sweat as a symptom was terrible. Night or day, in my sleep I would wake up pouring sweat from every pore. I carried extra shirts and underwear in my car, my truck and in my locker at work and changed frequently. At times to gross out co workers, I would wring the sweat from my underwear like a wet dish towel.

One Saturday morning I was sitting at my desk chatting with some dirtbike buddies on the internet, I looked at my purple stretch marks that had spread to look like purple claw marks from a huge cat and googled "abdominal stretch marks". What I learned changed my life forever. The images that I saw in front of me on the computer were nearly identical to what I had on my legs, belly and sides!

As I researched "Cushing's disease" I happened across a support group website ( Cushing' ) and began a quest. (Thank you MaryO for this wonderful resource and support!)

What I learned is that excess cortisol ( a hormone that is necessary for life ) destroys muscle, causes obesity and affects mental health, specifically causing anger and rage in men.

There are many difficulties in actually getting a diagnosis from the medical community. An amazing and disturbing lack of education, prejudice against overweight people, and ego is prevalent.

I did try to get help locally, as my family and friends all seem to question why I ended up in California and Texas for diagnosis and surgery.

However, after 5 endocrinologists who told me that I wasn't fat enough, wasn't sick enough or that Cushing's is "too rare" and I couldn't have it, I listened to advice from those who took this journey before me and went to a doctor who understands and specializes in the disease. It takes months of testing and many multiples of various serum, saliva and urine tests to prove or disprove cortisol excess. Most doctors, even endocrinologists who claim to diagnose Cushing's will not do this. Many times sadly, one test result that shows normal and they will tell you that you do not have it and now go away. Eat less and exercise.

Ultimately I ended up in Los Angeles, California to see Dr. Theodore Friedman, professor and endocrinologist who runs a clinic for difficult to diagnose endocrine cases one night a week, in addition to his day job as professor and lab rat.

9/01/06 - 1st appointment Dr. F in LA

11/06/06 - 1st high, 24hr. UFC 878 normal <105

17-OHC 13.8 normal <10.0

12/07 thru 7/07 - 2nd high, 24hr. UFC 585 normal <105

- multiple highs 17-OHC 11.0 - 19.8 normal <10

4/23/07 - Pit MRI read by Dr. McCutcheon at MD Anderson - abnormal pit showing evidence of right sided tumor

8/22/07 - 2nd appointment Dr. F in LA- cleared for surgery

8/24/07 - 2nd pit MRI

8/27/07 - IPSS at UCLA

10/29/07 - MRI at MD Anderson shows possible left sided tumor

10/31/07 - pit surgery with Dr. McC. at MD Anderson, Houston, Tx. Removed 2mm and 3mm adenomas, (1) left side and (1) right side.

10/31/08 - 35lbs weight loss, feeling much stronger and looking like a cure!

4/14/09 - GH and testosterone replacement

10/31/09 - 40+ lbs weight loss, still looking like a cure!

5/15/10 - still replacing GH and testosterone, weight loss from 266lbs to 223lbs. Physically and emotionally stronger and getting better every day!

UPDATE:  Phil had a recurrence and had a BLA (bilateral adrenalectomy) and is doing well.

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