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I was 28 years old, a newlywed, and in my third year of nursing school (my second bachelor’s degree), when I finally found a doctor that believed my feeling that something was wrong with me. I had spent nearly 7 years listening to my family doctor tell me that there was nothing medically wrong with me; his exact words were, “I know your family, everyone tends to gain weight when they get older. It’s just your turn now.”
| Before Cushing's |
With Cushing's |
8 months Post Operation |
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I knew it was NOT my turn. I had spent my life as an athlete, playing sports year-round through junior high and high school, and even continued playing volleyball in college. By age twenty, I had injured my back and was instructed by my physical therapist not to play volleyball my junior year. I was so depressed that I was no longer able to play, I gave up on working out completely, and so, it was no surprise to me that I had started to gain weight. But, by the end of my senior year, I had started to work out again, and closely watched what I was eating. Still, I continued to gain weight. I went to my family doctor once a year, and each time, they tested my thyroid and it came back with normal results. He tried to convince me that it was all in my head. “What do you expect?” he told me on one visit. “You are under a lot of stress and you are in nursing school now, you just keep thinking you have all these problems.” And so the more I tried to ignore the signs, the worse they became.
By early 2007, I was engaged, and my fiancé and I were planning our wedding, it was almost time for second year finals, and my symptoms were progressing. Besides the weight gain (over 100 lbs in 8 years), I had severe insomnia, despite my constant fatigue; I had crazy mood swings, crying at a commercial on television and fighting with my fiancé over the kind of turkey that he bought; I was losing the hair on my head and eyebrows, while I was growing it in “unflattering” places; I had joint problems in my hands, and such extreme foot pain, I could barely walk; I had red, round cheeks, stretch marks on my stomach and thighs, and bruises that appeared out of nowhere; and I was only 28 years old. Yet, because of what the doctor had said so many times, I just believed that all the problems were related to my weight, and due to my genetics, I was doomed to be like this forever.
Preparing for my wedding, I joined a program at my gym, where I attended one meeting a week with a nutritionist and sessions twice a week with a trainer, in addition to the 4 days I worked out on my own. After 8 months, I lost only 5 pounds. The nutritionist suggested that I meet with an endocrinologist and when I went home, and discussed it with my fiancé and parents, they agreed completely. My mother, who has a great sense of “medical intuition”, had always suspected an endocrine disorder. But, since I was in nursing school, and not yet married, my basic insurance did not cover visits to specialists. So I continued to work out and diet, and married Dan in June, 2007.
When we returned from our honeymoon, I called the number that my nutritionist had given me. The doctor she recommended was not available until the week after Thanksgiving, but he had a new partner in the practice who had availability in the second week in September, so I made an appointment and as it turned out, that appointment changed my life.
I sat in his office, and he looked me up and down, asking questions like “Has your face always been rounded? Have you always had a lot of hair on your face? How long have you had that lump at the back of your neck?” The more questions he asked, the more I became embarrassed to know that someone could pick those features out at first glance. But by the end of the visit, he had an answer. He was going to start testing me for Cushing’s Disease.
After months of blood work, dexamethasone suppression tests, 24-hour urinalyses, and a brain MRI, he said that clinically, I had Cushing’s, but the MRI was inconclusive, so I would have to meet with a neurosurgeon to go further. He sent me to his colleagues at Mount Sinai Medical Center in New York City, luckily, just twenty minutes from my home in northern New Jersey. I met with a neurosurgeon and a vascular surgeon on December 18, 2007, who told me about the IPSS (petrosal sinus sampling) test, that I had to undergo, and scheduled me right away. As we left the office, I cried in the elevator, thankful that we finally had an answer, and a solution.
The IPSS was scheduled for December 27th, and they called me 2 days later with the results. They had found the ACTH secreting pituitary tumor on the left side of my gland, and we could schedule surgery for early January. My pre-op blood work indicated that my serum cortisol was 38.1 (normal high is 22.0) and my ACTH was 44 (normal high is 27.0), and my blood pressure, which had always been low, was now up to 178/118.
On January 11th, I had transsphenoidal surgery to remove the tumor, and stayed in the hospital for two days, making it home that Sunday just in time to watch the Giants defeat the Cowboys in the playoffs. I was sent home on Decadron, but weaned down to 20mg Hydrocortisone daily within 4 weeks. Some symptoms disappeared right away; I lost 10 pounds in the first week home from the hospital, my appetite decreased dramatically (I lost the cravings for salty chips and chocolate that ruled my life for years!), and my blood pressure was immediately back to normal, 120/75.
It is now 6 months post-op, and I am getting better everyday. I am a much calmer person now, almost back to my normal self. Although I have not lost all the weight yet (only about 25 pounds to date), my gym schedule has changed drastically, so I am not expecting miracles. I still have foot pain, and find it difficult to walk in the morning and late at night, but I have learned that some of the symptoms that accompany the disease itself, remain in your system as your body goes through cortisol withdrawal. I am even participating in a Cushing’s research study at Mt Sinai Hospital, hoping to help others who have not yet discovered their diagnosis.
While the recovery is not easy, I am thankful everyday that I had a wonderful husband and family who supported me, and some of the world’s best doctors to treat me. I know that I will be better someday, and I look forward to the day that I will be my old self again.
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