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My experience with Cushing's is very similar to many I have read. My entire adult life I had always been very active, working out every day and very conscious of the foods I ate. In fact, I had gotten quite in shape my first year of college, dropping 40 pounds and becoming frightened of gaining weight to the point of obsession with staying slim. I always had minor Cushing's symptoms such as hair loss, irregular cycles, etc. - but I had been told as a teenager I had polycystic ovaries.
I stayed very active and remained a size 6 or 8 until about 2 years ago, when I began to notice I was gaining weight and had a lack of energy for exercise. I had mistakenly left a job I loved and had new stress in my life, so I figured I just needed to eat healthier and cut back more on food. This made no difference, however, and I grew increasingly moodier and unhappy about the fact that I had gained some weight. As more months passed my condition grew worse. As I noticed my stomach becoming quickly distended, I thought it could be possible that I was pregnant. I thought that might explain the purple lines beginning to develop on my abdomen. When I learned I was not pregnant, I became convinced that I had a hormonal imbalance, and decided to visit a doctor to have a blood test. By August of this year, my whole face looked puffy and I felt unrecognizable to myself when I looked in the mirror. I was depressed, anxious, and very weak. I had one doctor tell me to calm down and that being 30 now, my metabolism had just slowed down. Another shared her weight gain story with me and told me the South Beach Diet would work. I thought that I just had to try harder. By now I was down to 1000 calories a day, no more than 500 mg of sodium, and walking 3 to 4 miles each night after trying to get through what was now an exhausting day. (I had to stop working out due to fatigue and muscle weakness.) Finally, after being told I did not need to see an Endocrinologist, I got a referral due to some abnormal findings in a basic hormone test. I did not give up because I know my body, and I knew something was not right.
By early October, the first Endocrinologist had determined that I had Cushing's - and I was a classic case having nearly every symptom. Believing that I could just take a simple pill to regulate my hormones, I was extremely upset when I began to research this disease. For a person who is overly concerned with their weight and staying in shape, Cushing's disease feels like a cruel and ironic sentence. I had gained nearly 40 pounds, and felt like I had all but lost my happy, energetic, fit self.
My first round of tests showed the problem stemmed from a Pituitary tumor, but one was not found in my MRI. I had a very strong feeling that the MRI was wrong, but went through with yet another round of tests. I even dreamt that they had missed it; I know now to always pay attention to your instincts. The next step was an MRI of my Adrenal Glands. A small "nodule" and thickened lining was found on my left adrenal gland, and I was ready immediately to get it out of my body. But my Endocrinologist at that time told me that he was very confused; my test results still pointed to a tumor elsewhere besides my Adrenals. He recommended I visit a colleague of his in Miami who had treated more cases of Cushing's. I was very lucky that he persisted in helping me, and he got me in with a brilliant Endocrinologist named Dr. Karl at Jackson Memorial Hospital in Miami. Dr. Karl was convinced that I had a pituitary tumor, and ordered a dynamic MRI. The day my husband and I were told that I did in fact have a small tumor on my pituitary gland, I cried tears of joy that we found the source of what, I felt, was stealing my identity. After MANY tests and re-tests, 3 MRI's, an X-Ray, 2 CAT Scans, 3 doctors, 40 new and un-welcome pounds, losing my hair, losing my ability to concentrate, and struggling just to get through routine physical activities, I had found my source.
I quickly learned that with Pituitary Cushing's, it is crucial to find the best Neurosurgeon you can. His or her experience in removing these tumors is directly tied to ensuring that they get it all out. My husband and I joked about it, but it's true - this is your brain. I was blessed to be referred to Dr. Jacques Morcos, also at Jackson Memorial. On January 5th of this year, I was given a surgery date of Jan. 24th. I underwent Transphenodial Surgery via the upper gum line to remove my tumor, and thanks to my excellent surgeon my Cortisol dropped to below a 1 shortly after my surgery. They found that I actually had 2 small tumors that had grown together, and I am so thankful that my doctors were as aggressive as they were in surgery. I did develop Diabetes Insipidus that seems now to possibly be permanent, but it is easily controlled and a small price to pay for hearing that you seem to have been cured of Cushing's disease.
I am currently about 2 months post-op, recovering slowly but surely. I have weaned down from 60mgs a day of Hydrocortisone to 20mgs. I am learning a great deal about my views of myself and my self worth; that my identity was not just what I looked like on the outside but a smile, being kind, and having a sense of humor. The scale seems determined not to budge, but I can see my waist again, and every day I see more of my old face in the mirror. And yes, you do cry the first time you are re-united with your self! Of course we loathe what Cushing's does to our bodies and minds, but we must try to keep it from breaking down our spirits. It's not easy. I remind myself that in most cases Cushing's can be cured, and there are many diseases out there that do not come with that gift. I do admit that I still have fears and insecurities, but I am very fortunate to have an amazing husband, parents, family and friends - and a job that supports me and gives me all the time and space I need. I was also helped tremendously by a member of this support group, Christine Greco, and if I can be a friend to anyone going through Cushing's then I would love to help.
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