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Despite strict attention to my diet (about 1000) calories) and three or four days a week in the gym, I fought weight gain since my late 40s, the better part of 20 years. I was eventually told that I had hypothyroidism. Cushing's was mentioned in passing about 15 years ago, but there was no follow-up. During that period I would gain some weight, maintain it for months, and then gain some more. I began to feel fatigue and general malaise.
Then about three years ago I began to add weight at an alarming rate. I went to a dietician and really followed a rigid diet. The weight gain continued. My primary physician, as usual, advised eating less and exercising more. He never really believed that I was maintaining a strict diet. After all, I was getting older and it is to be expected to find it difficult to maintain weight. I had wild mood swings. My hair began to fall out, and I developed a skin rash and blemishes all over my body. They itched like mad. My face became puffy. No one yet noticed the hump on my back. I was exhausted, and having trouble walking. I labored to walk up stairs, despite the fact that until recently I had worked out 30 minutes, three or four days a week, on an elliptical and another 30 minutes on a treadmill. I began nightly episodes of vomiting, even when I didn't eat that evening. That likely resulted from Barrett's Esophagus, which is spillage of gastric juices into areas where they don't belong. Excess pounds on the upper body are probably not helping matters. Undetected was a return to anemia, which had been borderline condition for a number of years. I'm currently undergoing tests to find out where I'm losing blood, since I depleted my body's entire store of iron. I'm on iron therapy until the situation is resolved.
Along the way, my primary care physician advised that I see a psychiatrist. Like a dutiful daughter, that's precisely what I did, even though I felt frustrated, not depressed. The sessions didn't help. Friends advised gastric bypass surgery, standard and esoteric diets, natural herbs and who knows what all. Finally, I went to a physician who specializes in weight management. After a month of diet supervision, she announced that she has a sister who has Cushing's and there was every indication that so did I.
She sent me to an endocrinologist, who tried several drugs to no avail. Then he, too, mentioned Cushing's, and saw to it that I had an early appointment at the Lahey Clinic in Burlington, MA. For the next six months I underwent a battery of tests, and on May 11, 2006 I had 50% of the left side of the pituitary and 25% of right side removed. There was not tumor, but there were considerable amounts of abnormal material to warrant their removal.
The operation went well, and I was home five days later. I was put on high doses of cortisol, which, over time, was reduced somewhat. I'm currently taking 15 mg in the morning and 10 mg at night. I've lost 20 pounds, but few recently. I still watch what I eat, and often do not feel hungry. The rash, vomiting and mood swings have recently returned, but I have more energy than I've had for years. I've been going shopping, much to the horror of my husband, who, by the way, is my hero for the way he has always taken care of me. Overall, I'm feeling better than I have for years.
I also must acknowledge the extraordinary outpouring of help from our church and local community. For the first six weeks following surgery, there was not a day that passed without somebody dropping by to chat, prepare meals, or just be there for me. I'm still in awe of their love and concern.
While doling out kudos, I'd be remiss if I didn't mention that the staff at the Lahey Clinic is wonderful. My endocrinologist, the lead player on my medical team, returns calls within a day, even at night. I feel very well informed by all members of the team, and without exception, each takes time to keep me well informed of my medical situation.
My goal, first and foremost, is to fix my body. I'm making progress, but there's along way to go before I feel normal again. But I also want to educate the local medical community about Cushing's Disease so that others do not have to go through the misery I did before a proper diagnosis is made. Along the way, I'd like to be able to share my experiences with other Cushies, and perhaps lend them a hand.
Cushing's Disease is a strange and debilitating affliction. It changes our outside appearance and raises havoc with our insides. But in my case, there is a positive side in that the love and understanding and care I received from my husband of 48 years, and my friends, was simply wonderful. I never knew anyone cared that much about my well-being.
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