My Story by Louise Pace
When I was forty-two years old, I was living in an affluent Florida community, working successfully at a career in real estate that I enjoyed, traveling, exercising daily, eating well, and socializing with friends and family. I was happy and content, living a lifestyle anyone would envy. I felt like I was on the top of the world. There was nothing that I missed or needed; I had it all! I never dreamed that life as I lived it at that time could change so dramatically and so irrevocably. The next four years would prove to be a living hell.
Change came gradually and insidiously at first. During one of my workouts, for example, I noticed large black and blue marks on my legs. I ignored them until my trainer noticed them as well. I then consulted an internist who kindly told me not to worry. He felt that because I was “thin skinned,” my strenuous workouts, especially on the nautilus machine, were no doubt responsible. When the black and blue marks persisted for months, I consulted another physician because I had read that bruising may be a symptom of leukemia. Fortunately, the tests for leukemia were negative, but the physician suggested that I was being beaten and abused and suggested that I seek help from a shelter. I denied abuse of any kind, but the physician kindly said, “All women deny it initially.” Because the physician could not be dissuaded, I consulted yet another internist who suggested that I had a vitamin K deficiency. Vitamin K therapy was instituted; however, the bruising not only persisted but worsened.
During this same period, I became amenorrheic and complained of hot flashes, mood swings, and insomnia. Because my mother experienced early menopause (in her forties), I assumed that I was beginning “the change.” My gynecologist prescribed estrogen replacement therapy because he was confident that “I was exhibiting all of the signs and symptoms of menopause.” I bled for six weeks, in addition to feeling severely fatigued, emotionally drained, and increasingly incapable of following my normal routine. I returned to the gynecologist complaining of feeling worse not better. “Calm down,” he said, “you are being overly dramatic. It merely takes time for the estrogen to kick in.”
After several more months, I became increasingly despondent over my loss of physical well-being. I was tired and irritable most of the time and was experiencing minor depression and confusion. It is at this time that I developed reddish-purple linear markings on my chest and arms. Some days these markings were remarkably bright, while on others, they were somewhat faded. The markings never seemed to appear in the same spot but travelled from place to place on my arms and chest. A dermatologist suggested that I had abused my skin by sunbathing for twenty years. Although admittedly a sunbather as a young woman, working long hours allowed very little time for that kind of activity in the recent past.
At a friend’s suggestion, I consulted a tropical disease specialist since I had travelled to China, Nepal, and Africa within the past two years. The specialist was confident that I had contracted a skin parasite indigenous to the areas I had visited. I refused the treatment that was suggested as I was not convinced that I had contracted a parasite, and the treatment seemed too invasive.
Another troubling symptom appeared which merely compounded the despondency that I was experiencing. I began to gain weight, a most unusual event for someone who had maintained a trim figure at 124 pounds for thirty years and who maintained such a vigorous diet and exercise routine. A new gynecologist told me that I looked pregnant and ordered a pregnancy test, even though I protested that my tubes had been tied and I was not currently sexually active. At this point, I began to travel back and forth to Boston to be with my family. My work suffered. Months had gone by, bringing a worsening of both physical and emotional symptoms. I continued to gain weight, and at times, experienced extreme paranoia and confusion, bordering on psychosis. My hair began to thin to the point at which my scalp was showing. My body hair disappeared completely. I cried every day when I looked in the mirror at my fat, ugly, balding self, for which no one had an answer. I felt as if someone had put an air hose in me and blew me up.
Back pain and stiffness began to plague me, making exercise impossible. I went to an orthopedist who concluded that my back problems stemmed from the recent weight gain. He suggested exercise to build muscles and reduce fat. The weakness in my back eventually became weakness in all of my muscles, rendering me incapable of any physical activity. I had difficulty getting in and out of a car and simply walking. I became very clumsy, frequently tripping. I had a very hard time holding my head up. Another internist ruled out multiple sclerosis and lupus and suggested that I needed a psychiatrist.
Mental confusion, forgetfulness, and an inability to concentrate had an obvious effect on my career. Sales were off, as were commissions, contributing to my chronic state of anxiety. Many friends stopped calling me, often intimating that I was a hypochondriac or that I was drinking heavily. I then embraced the idea of a psychiatrist as perhaps a solution to my current mental state. The psychiatrist concluded that I, having been previously a striking-looking woman, was obsessed with how I once looked and implied that my emotional immaturity was not allowing me to accept gracefully the natural aging process. He stated, “You cannot be beautiful forever.” I protested that I had not only lost my looks but also my mental acuity and my ability to work, exercise, or sleep; and I was suicidal. The psychiatrist prescribed prozac and told me I would feel better within three weeks. Unhappy with this diagnosis, I consulted another psychiatrist who surmised that I was suffering from a somatic disorder and was obsessed with my body. I continued with the prozac to help with my depression, but I did not return to either psychiatrist.
Gastrointestinal bloating led me to the office of a very prominent gastroenterologist to investigate the possibility of Crohn’s disease. Highly recommended as a great diagnostician, I felt certain that the end of the road was in sight. This physician suggested a daily food diary to determine which foods were likely to be causing the bloating. I followed his instructions to a “T” but to no avail.
Having exhausted most medical avenues and having exasperated both friends and family, I became seriously depressed and suicidal. I began to write notes to my family and to call friends to say goodbye. One of these friends was my college roommate, Jane, who I had not seen in two years because of distance, but with whom I spoke regularly by phone. Jane felt for some time that I had a serious problem. As a medical editor, she had spent years researching and reviewing many medical conditions, often diagnosing cases described by her physician husband. Blessed with a logical and critical intellect, she now began to concentrate on my symptoms. When I called to say goodbye, she pleaded with me “not to give up because there had to be something the physicians were missing.” Jane asked me to list all of the symptoms I had experienced over the past three years. Knowing the fragility of my mental state, she promised to call back in twenty-four hours. She then consulted a major internal medicine text (Harrison’s), following up on all the symptoms through the index. Then remembering that I had remarked in our last conversation that “friends did not recognize me in the parking lot this morning,” she sought out the pituitary chapter knowing that pituitary problems can “change your looks.” She then found a small table listing all of the possible symptoms of Cushing’s disease and compared it to my list.
I had eleven of the possible thirteen symptoms of Cushing’s disease. When Jane excitedly told her husband, she was sure she had discovered my problem, he told her, “You have medical student’s disease and should not get Louise worked up over nothing.” Ignoring her husband’s snide remark, she called me and told me that she was sure I had Cushing’s disease, as I that so many of the possible symptoms. She told me to go at once and have my cortisol level checked as I possibly had a tumor somewhere in my body (e.g., pituitary or adrenal gland, lung, or optic nerve) that was producing too much cortisol and causing ALL of my symptoms.
My internist was entirely skeptical saying, “So your roommate says you have Cushing’s disease?” However, he allowed the test to be performed. My cortisol levels were off the charts. My very surprised internist sent me immediately to an endocrinologist who was positively “shocked” by my appearance and stated that “I was a textbook case of Cushing’s disease.” He informed me that the good news was if they could successfully locate the tumor, I would be cured. (However, sometimes it is impossible to find the tumor that is secreting too much cortisol [ectopic tumors]) A twenty-four hour urine free cortisol was measured and an overnight dexamethsone suppression test was performed confirming the diagnosis. A computed tomography scan and ultrasound determined that the adrenal gland was the location of the tumor. A right adrenalectomy and months on replacement steroid therapy until my left adrenal gland, at first atrophied by the overproduction of the right adrenal, began to again produce normal steroid hormone, brought me to the end of my medical nightmare.