Cushing's Info

December 31, 2009

Happy New Year's Eve everyone.  It's just a couple hours before 2010 rolls in... the year I am going to take control of my healthcare and get that diagnosis of Cushings that I so well-deserve.  I have finally had an MRI of the brain last week, but won't get the results until January 7th.  My neurosurgeon and his office staff took a week and one-half off for Christmas, which was fine with me.  I too am in the healthcare industry and know how important it is to have time off to refresh and renew.  My results can wait and, of course, they ensured me they would call during the holidays if anything presented as life-threatening.  I have waited 20 years, I can wait a few days more.  :)

My history is very long and I'm sure a familiar story many of you have heard before.  My goal is to share my information with you in hopes that it will help someone else to obtain their diagnosis and treatment early on, to gain knowledge myself, and to receive and provide support.  I live in a suburb of Dallas, Texas and, like many, struggle of find that special endocrinologist who is not only open-minded, but has experience treating Cushings, goes above and beyond and does NOT give up on you...

Born in 1954, I enjoyed a healthy, disease-free life until I was 17,  at which time I passed a kidney stone.   For many years after, I took Grantrisin and Azo-Gantrisin for presumed pyelonephritis.   I had a continuous, low-throbbing pain in the lower back where the kidneys are located.   I would eventually develop hyperaldosteronism (Conn's disease) and will always wonder if that was the beginning of my adrenal dysfunction.

1972-1987:
During my twenties and early thirties I struggled with severe heat interolance, with embarrassing flushing of the face.  Dallas is not a very good place to live when you can't handle the heat :)  When I was approximately 32, I remember my hairdresser mentioned that my v ery THICK hair was thinning in the front.  During those years, I also had four emergency room visits for severe pharyngitis and strept throat.  The episodes were so severe, I was provided viscous xylocaine (a liquid form) to numb my throat enough to eat and drink fluids.

1986:
Suffered an extreme form of stress when my son's 10-year-old best friend was killed by a speeding motorist who came through our neighborhood going 80 miles per hour. The speed limit was 35....  And my son was with his dear friend when it happened.   I was very lucky my son had crossed the road before this mad man changed our lives forever.

1987:
All my life, I had been thin - a normal weight, but on the lean side for my 5' 6" frame.  You know, the days when you can get into those really skinny jeans...  I had even had two children, who were now 13 and 7, and had never been overweight.  Suddenly, without any change in my eating or exercising habits, I began to rapidly gain weight and feel ill - very tired, insomnia, dry, thinning hair, dry skin, cold and heat intolerance, etc. - the typical indications of hypothyroidism.  My internist did the standard thyroid tests and when they came back normal, she pronounced me depressed and the anti-depressant drugs began.   My son was due in court soon to testify at the criminal trial of his friend's death and he too was having a hard time coping, so I believed my internist when she made her quick decision.  That year I went from 120 to 180 lbs. in a few short months.

1988:
As if it were magic, my body suddently dropped from 180 lbs. to 140.   I was excited about the quick weight loss, but I knew that was very odd and I felt like I was on a rollercoaster.   Continued with severe depression and a general feeling of being ill.   Not sure how I continued to work and take care of my children...

1989:
Thyroid symptoms returned, worse than ever, with weight beginning to increase again.   Depression worsened and my husband and I separated.   Another year of extreme stress to follow with eventual divorce in May, 1990.  More thyroid tests, all negative.

1990:
Thyroid symptoms worsened....  Being in the healthcare field, I decided that enough was enough and I called and made an appointment with an endocrinologist and when they asked "who is referring you" - I knew the ropes and gave them my internist's name.   They day I arrived, I was desperate and hoping for a miracle.  When my appointment began and I started telling the endo my story, he immediately said "you don't have to convince me, I can see that your thyroid is enlarged while you talk."  He asked if I would be willing to have a nuclear study performed and I agreed.  They injected me with the nuclear dye and I had to wait two hours in his office before the exam could be performed.  The result was a 2-3 x enlarged thyroid gland.  Perhaps, the four episodes of pharyngitis and stret throat had damaged my thyroid gland?  My physician went on to explain to me in great detail how complex hormone-related illnesses are to diagnose and that you can have a disease and it never show up on a blood test.  He was my savior that day and I will always be grateful to him - if only because he didn't make me feel like I was crazy, but he also gave me a false sense that taking thyroid replacement would help me to return to "normal."   That was not to happen...

1992:
Suddenly developed hypertension and hypokalemia (low potassium) and prescribed Aldactone (spironolactone).   This was the beginning of hyperaldosteronism and the diagnosis of Conn's disease.   My body was now producing too much aldosterone.   CT with contrast of adrenals indicated no tumor, but did show hyperplasia (or enlargement) of the glands.  By this time, I was a single mom and did not have the "time or money" to be sick.   I had to just take my maintenance meds and get on with it...  This also began my journey with Cushings.  Every doctor I was to meet from here on out would begin their conversation with "has anyone ever tested you for Cushings?"  Dexamethasone supression at that time was normal, so, again, according to the doctor,  no need to test further...

1992-1996:
Hair continued to thin and one day I woke up and realized I was not the person I knew.   My face was round, red and puffy.  My thin, lean body was now heavy in the middle.  I developed a buffalo hump.  My personality had changed.  I was tired all the time, but life went on.   Around 1995, I placed myself on a very strict diet and managed to lose 20 lbs.  Even though my weight was down and surely that is healthier than being overweight, I was starving myself to maintain my size.  I literally ate rice and small amounts of protein most of the time.   During these years I lost count of the number of tests performed to rule out Cushings...

1996:
In August of 1996 I met the love of my life....  John of Scotland.  Literally, John was born, raised & living in Scotland and we met on the Internet!   The internet was brand new to the public  back then and, being in healthcare IT, it did not take me long to realize you could search AOL member profiles and contact people in other COUNTRIES!   How cool was that???  OK, I realize you young folks are thinking this is really dumb, but back then there were only THREE people online in Scotland.  This is a whole other, wonderful story, with a happy ending that I won't share you at this time, but needless to say we are the couple who lived and inspired the movie "YOU'VE GOT MAIL..."  :)

1997:
John moves to the U.S. and we marry.   We will celebrate our 13th anniversary on January 20, 2010 :)   OH, by the way, HAPPY NEW YEAR 2010!!!!   It's now 12 PM.

1998-2009:
By this time, I am beginning to realize that my condition is "cyclical."   I have periods when I feel fairly "normal" and when I think I'm about to go right on over the edge.  Hot flashes and flushing worsen and at the age of 43 I rapidly go through menopause and my periods completely stop.  I too thought I was pregnant and actually took a pregnancy test, even though I had had a tubal ligation in 1980!   I could not possibly be so young and go through menopause!!!!   More tests, another CT of the adrenals, no diagnosis...  kept myself busy with work, my wonderful new life with John and completed a degree in health information management (how, I do not know....)

2009:
OK, we are finally in the present and I'm sick..........   I had an acute episode in October that was the worst ever.   I developed panic attacks, depression returned, weight gain of another 15 lbs.  I'm now at 194 lbs.   Things got so bad, I signed up for "intermittent" leave of absence from work.   This allows me to take time off whenever needed if I feel ill or have doctor visits/tests without it counting against me at work.   I guess I should be glad for the dx of "hyperaldosteronsim" and cyclical Cushings provided by internist, which secured the intermittent leave for me.  Finally, 20+ years later, I am at a point in my life where I have enough insurance, time off and money in savings that I can pursue a diagnosis and treatment of Cushings - which will happen in 2010.  I will travel, I will seek out the best endocrinologist, and I will have tests & until it's DONE.

However, I was devastated, again, when my current endo called to state that my recent tests were "normal" again, that she had spoken with her senior partners and they agreed that I have no endocrinology issue, and that she wished me well....  Two weeks before this call, she had told me that if we did not receive a definitive diagnosis with this round of testing, which included 24 UFC and two rounds of PM salivary cortisols, that she would refer me to the Mayo Clinic for inpatient testing!  Needless to say, I'm looking for another doc...  I did, however, smile to myself during this conversation.  I had recently seen my neurosurgeon for followup, having increased pain with my buffalo hump and severe fatty pads developing around my neck.  Again, with my healthcare background, I knew when I updated him on my condition he would want to pursue a head MRI to go along with same of the neck.  I also informed him that I have now lost all my armpit hair and most of my pubic hair is gone - a sign of hypopituitarism.  He smiled and said "you look very cushingoid - let' scan everything and get that tumor out of there."   Let's hope he's on the right track....

I also have a wonderful physician assistant in my internist's office who agrees that I have cyclical Cushings and provides me with the best physical and mental healthcare...

I hope no one ever has to go through the years of pain and frustration that I have endured to obtain this diagnosis and that youreceive the treatment you need in a timely manner.  Money, work, time off and physicians should not be our enemy....  but unfortunately, YOU are your best ADVOCATE.   Don't give up and demand that your rights to choose your healthcare path are honored.

As I said earlier, I had the MRI of the brain recently and will receive the results on January 7th.  My birthday is on the 5th - let's hope my visit with the neurosurgeon will be the best present I have ever received!  I will keep you posted...

No matter what I have been through, I am the luckiest person in the world to have John in my life.   He is my shining star who lovingly takes care of me every day.  Without him, I am only one-half of a whole and would not survive.   Thank you, my love, for all you do - WB

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