Cushing's Info

Cushings certainly changed my life.  I went from being very healthy and in shape to wondering what was happening to me!

My first symptom was the weight gain.  I noticed in 1993 that I had gained about 15 pounds even though I was continually counting calories. I went to my primary care physician to voice my concerns, and was basically ignored.  I was told to eat less and informed that I couldn't possibly be eating 1200 calories.  I waited another two years to go back.

At this time, I am 50 pounds heavier and eating around 1000 calories per day.  Again, the same physician told me to eat less, exercise more, and see a nutritionist.  He had done blood tests during visits, and I was told I would only get a call if anything was wrong. Besides the weight gain, the only other medical issure were my eyes.  My vision was changing quickly.  I was being sent from opthalmolgist to opthamologist to retina specialists.  In 1996 my left retina tore and was repaired.

In 1997 my right retina tore and was repaired, and in 1998, my left eyelid dropped and had to be repaired.  The opthalmolist told me something was seriously wrong as I was 48 and people didn't have the problems I was having until they were 70 or 80.  By this time I was 120 pound heavier than when I had started gaining weight.  I was so tired all the time, but I blamed it on all the weight.  I am a teacher and it was becoming increasingly difficult to do my job.  I was exhausted all the time.  I also had three children, a husband,  and a household to run.  I had acne, severe memory problems, very thin skin that would bleed easily, high blood pressure, high white cell count, muscle and bone weakness, depression, and fluid around my heart.  I was so disgusted with myself and I couldn't understand what had happened to me.  My family, especially my husband was also thoroughtly repulsed by the way I looked and made mean comments almost daily.  My children were ashamed of me.  I had always taken great care of by body, and I had totally lost control.

My opthalmologist referred me to a neurologist.  He ran some tests, sent for all my records from Cigna and found out my white cell count had been running very high since 1993.  He referred me to a hematologist.  The hematologist was the very first doctor who actually listened to me.  He asked me to tell him everything that had changed. When I told him, he said he thought that I had a very rare disease which was making my cell count high.

He said I needed to see an endocrinologist  to determine if I did have this condition.  He did not give me the name of the condition.  I saw the endocrinologist in October of 1998. After two dexamethasone tests, one 24 hour urine cortisol test and a 72 hour urine cortisol test, I was told 2 days before Christmas in 1998 that I had Cushing's Disease and it was probably a pituitary tumor.  I was told I would die without surgery.  I had to have a cat scan and an MRI.

Even though the MRI showed the tumor, Cigna Insurance also required the Petrosal Sinus Sampling.  That was a very scary test.  The doctor preforming the test informed me that I was the second person he had ever administered the test to,and he said he had many difficulties administering the test.   It took five hours.  I also had to see a neurosurgeon and he had to recommend that I have a pituitary expert perform the surgery out of network.

I was sent to Dr. Rhoton at Shands Hospital in Gainsville, Florida.  He was wonderful.  He scheduled to surgery for May 31,1999.  I went back for my pre-op visit on May 27th.  I informed him that the insurance had denied my surgery.  He told me not to worry becuase Shands Hospital had lawyers who would sue the Insurance.  He said he would be preforming the surgery on Monday whether the insurance approved the surgey or not.  He told my husband and I to not worry about the coverage.He said I had to have the surgery. He said that he would be calling the insurance company that afternoon. The next day, my husband received a call from the insurance company saying the surgery had been approved.  Shands and Dr. Rhoton were wonderful.  I can not say enough wonderful things about both.

Surgery went smoothly.  I was in the hospital for five days.  I never received a bill from Shands so I have no idea how much that surgery did cost.  Recovery was not easy.  I was very sick for several months.  I remember that my entire body hurt, and I would throw up and have diaahrea almost daily.

However, by August, I was better and began teaching.  I only taught half days that year, but I began teaching fulltime the following year and I am still teaching fulltime.

My growth hormone levels are low so I participated in a study at Boston Massachusetts Hospital on the effects of Growth
Hormone in patients who had low growth hormone levels due to pituitary tumors.  The doctors told me if I participated in this study, my insurance company would cover growth hormone.  My metabolism went from burning 1300 calories per day to burning 1900 calories by the end of the study.  I also had much more energy.

However, Humana turned down the request for Growth Hormone.  Consequently, I am still very heavy from Cushings, and now my metabolism is very low.  Otherwise, I feel well.  I do get tired by evening, but I feel I am very lucky.    Last year I had severe aches in my arns and legs, and I found out my Vitamin D was extremely low.I don't know if this  has something to do with Cushings or not.  This is a disease that often takes years to find, like it did in my case.

However, surgery can save you and restore your life.  I only wish I could lose the weight Cushings added on me.  It is very difficult to be so overweight.  My husband left me two years after surgery as he said he couldn't take the extra weight.  My children beg me to lose the weight.  I would give anything to lose the weight!

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