Cushing's Info

Hello my name is Holly; I am 30 years old and have been battling health problems since 2001. I was working for a local Plastic surgeon and loved my job while attending nursing school which was my childhood dream. I was also in an abusive marriage which did NOT help matters at all. Since childhood I was always healthy and very active, I stayed busy with dancing, gymnastics, and pageants. I was never overweight and obesity doesn’t run in our family. Throughout my teenage years I maintained an average size of a 3/4 or 5/6.

Shortly before graduating high school, I developed severe anxiety and panic attacks. I was put on several medications, two of which were Prozac and Xanax which relieved some of my anxiety symptoms. After about two years, the anxiety became worse and I then developed severe depression along with OCD. Things quickly began to go downhill at this point. I noticed I was fatigued most of the time, and couldn’t do things that a “normal” teenager my age was doing. I felt extremely isolated and alone.

I never realized exactly how much weight I gained until looking at my wedding pictures, I was shocked! I married in May of 2006 and from that point on my life took a complete turn around for the worse. In September I noticed I had gained even more weight. Never having weight problems I decided to get a personal trainer and was determined to get back to my original size. My marriage was already not doing well which didn’t help matters at all. I was exercising seven days a week, counting and logging every bite of food that I put into my mouth. I lost a grand total of 5 pounds in 5 months. My trainer accused me of lying on my food chart. I was so distressed! Why would I lie to myself when I was vigorously trying to shed weight? My joints and muscles never overcame the exhaustion of the strenuous work outs which is so unlike me. I kept thinking in another week it will be better but that week never came. In January of that next year I developed the flu and bronchitis. This turned into pneumonia. This was the first in many series of bouts with such ailments. I was told that my immune system was shutting down. I scheduled an appointment with an Internal medicine doctor and was told that my metabolism was slowing down. In my late 20’s…I don’t think so!!!  I was prescribed Byetta which did absolutely nothing but made me feel worse, not to mention I still didn’t lose a pound. All of my other symptoms were never addressed.

Now comes the insomnia…I was no longer sleeping at night and was getting whatever sleep I could within the day. I developed edema in my legs, hands, and feet. Then came the night sweats and spontaneously, my libido was nonexistent.  More prescriptions were given…diuretics and more antidepressants. Also, my marriage turned into a mentally abusive nightmare which of course made matters even worse. I had absolutely NO support from my husband.

Over the year, new symptoms began arising; I developed persistent diarrhea, migraines, menstrual irregularities, breast tenderness, recurrent upper respiratory infections, low back pain, dry itchy thin skin and new stretch marks. I was having memory lapses, forgetfulness, irritability, flushed face and neck, exercise intolerance, abdominal pain, throbbing flank pain, extreme sudden crashing fatigue, difficulty concentrating, trouble finding words to express myself, chronic sinus infections, a hump on the back of my neck, high blood pressure, high cholesterol, periods of rage followed by inconsolable crying, and frequent burning headaches. I then made an appointment to see an Endocrinologist and was told there was nothing wrong with me, except that I had Hypothyroidism. After much persistence he ordered blood work and a 24 hour UFC, which came back at 89 (upper limit 50) and an ACTH level of 133 but still didn’t believe that I had Cushing’s. It was too rare! He did agree to retest in about a month and my UFC then was in the normal range therefore Cushing’s was ruled out.

More symptoms began to appear such as hair growth on my face, I developed infections; my scalp, neck, and face were extremely oily while the skin on the rest of my body flaked off with ease. I had excruciating joint and muscle pain, muscle twitching and tremors, I was gaining more weight although I had persistent nausea and no appetite. I gained 70 pounds in two months. I became socially isolated, depressed and lethargic. My quality of life was failing quickly. Many days, I felt as if I just couldn't go on feeling so sick all of the time.  I was so ill with infection after infection and unbearable pain. What did I have to live for?

Almost overnight I developed a severe case of heartburn; it became so bad that I thought I was having a heart attack. I made an appointment with a GI doctor…after a colonoscopy and EGD I was diagnosed with acid reflux and gastritis, I was given Zegrid and a few other medications, and had my gallbladder removed which did little to no help. I contacted my Endocrinologist to let him know that after the surgery I still had no relief and was told that he didn’t know where to go from here. I was in complete shock and disbelief.

By word of mouth I heard about a doctor in Minnesota specializing in Internal medicine and out of desperation I called and scheduled an appointment with him.  Two weeks later I was on a plane anxiously awaiting a diagnosis. After reviewing all of my labs and progress notes and an in depth exam he seemed to think that it was indeed Cushing’s disease, I was referred to the Mayo Clinic. Two weeks later I was on another plane headed to the Mayo Clinic to see an Endocrinologist there. I thought that I was FINALLY being heard and getting closer to a diagnosis. I stayed in MN for two weeks of constant testing including an overnight sleep study and left with a diagnosis of Restless Leg Syndrome, asthma, and sleep apnea, I was given a CPAP machine to sleep with and told that I would soon feel better and there was no need to come back. I did NOT have Cushing’s. This was the longest trip home and I was completely devastated, how do I explain to my family that I went to “the best of the best” and there is nothing wrong with me. At this point I just gave up on going to doctors all together; I didn’t want to pursue with any other doctor to just be told that I was fat and there was nothing wrong with me. For a full year I did not test and stayed home in bed severely depressed.

My life began to change when I “accidentally” ran in to Jada; who is also on the board. She was my angel sent to me directly from heaven. She gave me hope that was once lost and introduced me to Dr. Ludlam. Not long after meeting Jada I scheduled a phone consultation with him and scheduled a visit to Seattle for an extensive 5 day workup. I had some really high numbers while I was there and also had a few lows however Dr. Ludlam does believe in cyclic Cushing’s. I believe this is a direct indication that pituitary tumors can cycle, or turn on and off, just as every other endocrine system in the body does. While in Seattle I had the IPSS done and the results tend to lead to the left side of the pituitary. Currently I am doing at home test kits to get a few more high numbers before my surgery is scheduled.

No matter where you are located; nor what reputation local doctors have; you MUST seek help from a pituitary specialist!!! I have every confidence in Dr. Ludlam and his staff. They are the experts! Being located in Baton Rouge, Louisiana we are “supposedly” known for excellent specialist in their particular fields. I BEG TO DIFFER! It’s a shame people have to travel from other areas to see these doctors. To me…you are strictly a “number” here. They await you with their prescription pad in hand and on to the next “number”. I am sure that some of you…like me…are already wondering about the expenses you’ll incur with travel, etc. for a trip to Seattle. With the help of my family and supportive friends, we had benefits, etc. to help with expenses. Do what you have to do! Get where you need to be.

In closing, unfortunately I can't remember exact dates, but I can assure you this has been on-going for at least five years. With my friend Jada's help, I've started a journal of sorts with pictures and notes accounting my experiences. It's important to provide pictures as your weight has increased, document progression of your symptoms, and finally, your mental state as time progresses. Please feel free to write me as I would be happy to correspond with you.

Wishing you well and the best of luck...Holly!

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