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Cherri's Story

My name is Cherri Simonds and I live in Huntsville, Alabama. I am currently 36 years old, married for 14 years – without children. My odyssey with Cushing’s started when I was approximately 27 years old. Once upon a time I was a happy, normal person. At 5’5” I weighed 112 pounds and was a swimsuit model (the kind of person I hate to see these days). I was active, I could eat whatever I wanted (though I opted for a “clean” diet) and was rarely sick. I did some personal training and was taking nutrition classes as I wanted to be a personal fitness trainer in addition to working my regular full-time job.

Then something strange happened. My skin (which had always been practically flawless – see “before” photo) became dry and itchy. I went to a dermatologist and she said I had the worst case of eczema she had ever seen. I was literally scratching myself bloody. Soon the eczema was followed by swelling, bad acne, dry hair, fatigue and nausea. When my period stopped I made an appointment with my gynecologist. He said nothing was wrong, prescribed some hormones to get my period jump-started and changed my birth control pill prescription (I had been on “the pill” for 6 years prior without a single problem). Within 6 weeks my weight rapidly increased by 30 pounds (needless to say my modeling days were over). I couldn’t figure out where I had gone wrong in my diet and exercise program to cause the weight gain. So, I doubled up my exercise time and decreased my calorie intake but the weight did not come off. I then tripled my exercise time and was down to 800 – 1,000 calories per day and still had no weight loss. I started trying OTC diet pills and I still didn’t lose weight. I then began researching different diets. I tried high protein diets, high carb and low fat diets, Slim Fast, the grapefruit diet, the Hollywood diet, the diabetic diet, the allergy-free diet, the blood-type diet, etc etc. Nothing worked. Then I thought maybe the new birth control pills caused the weight gain – so I went off the pill. Still, no weight loss.

Thus began my trips to one doctor after another in a fruitless search for answers. The first doctor said, “Well, this is all part of getting older” (27, old!?!?) and said that my metabolism was just slowing down. “Get used to it, you’re not 18 any more,” I was informed. However, I could not accept this answer. I became more and more obsessed with food, calories, and weight loss. I counted every calorie, every fat gram, sodium intake, weighed my food, kept a food diary, etc. However, after all the effort my weight stayed the same.

Then came new problems – increased swelling (I couldn’t just label it “bloating” any more), inability to tolerate hot or cold temperatures (I blacked out in a hot shower), the inside of my mouth would swell up and feel like I had a Novocain shot, hair started breaking off and falling out, my periods got extremely heavy or very light, my bowel habits changed drastically, I began to bruise easily, I got skin tags, brown spots started appearing on my shoulders and chest, I had blood pressure spikes, trembling, and started having muscle and bone pain. I had to have knee surgery when I tore cartilage from a slight, accidental twist. My phases began to “cycle” – good phase, bad phase, good phase, bad phase…. I never knew how I was going to feel from day to day. I would go for weeks with extreme fatigue, abdominal pain, muscle aches, nausea, loss of appetite, strange neck sensations, and choking bouts. Then the pain would disappear, I’d get energetic, the swelling would increase, I’d get voraciously hungry, my blood pressure would increase, I’d have acne breakouts, and my face would turn pink (especially at night). My weight began increasing every few months. I went to another doctor and he seemed concerned at first. He said something was definitely wrong – until my standard blood tests came back within the normal range. He then told it me I must have been “meant to be fat” and sent me to a nutritionist. I was told to write down everything I ate and drank and to record the time and mood I was in when I consumed said items. A week later I took my “diet diary” to the nutritionist and was told there was “no way I could be eating like that all the time and still not be able to lose weight.” I was then accused of being a “closet eater” and said I needed to see a psychiatrist. She felt I was probably using food as a “crutch.” A crutch for what? She said I must be suffering from depression and I was overeating because of that. The only thing that was depressing in my life was all the health crapola! Every thing else was “peachy.”

As time passed, my weight kept increasing and each time my weight increased I tried a new diet. Each new diet only brought more frustration – as I gained even more during a diet. Why could I not lose ANY weight? Finally I was sent to an endocrinologist for a check-up. During this check-up the doctor asked me if I had ever been tested for Cushing’s. I had never even heard of Cushing’s – so obviously the answer was “no.” His reply: “Well, Cushing’s is rare so I wouldn’t worry about it.” However, he did one cortisol test and a complete hormonal work-up. A week later I had a follow-up appointment where he told me that nothing was wrong that a diet wouldn’t fix. However, he noted that I was in a state of “alkalosis” and proceeded to ask me if I was anorexic. Excuse me? There I was, 50 pounds overweight and being asked if I was anorexic while at the same time being told I needed to go on a diet. He then said he wanted to discuss diet and weight loss strategies with me – I left and never returned. A couple of years later I requested copies of those test results. I found out that my cortisol level was 3x below normal!

Since, I had again been told by another doctor that I just needed to go on another diet I decided to take drastic measures. I opted for plastic surgery. I had liposuction and a tummy tuck. Six months later you could not tell I had even had it done – all the fat came back. All I had to show for it was an abdominal scar and surgery payments. A year later I tried a new diet drug – Phen-fen and my weight started dropping like crazy. I went from 162 to 129 in two months. I thought a miracle had occurred! When I was taken off the diet pills I was afraid the weight would immediately increase but it didn’t. My weight remained steady at 129 – 135 pounds for several months….until my period stopped again. I was then put back on birth control pills and in less than 3 months my weight was up to 170. So, I took myself off the pill again and begged for another Phen-fen prescription. This time was different – I didn’t lose a single pound! Why had I lost so much weight the last time, and after so many failed diet attempts, and not be able to lose weight again? I finally assumed that I had messed up my metabolism and had no one to blame but myself.

More time went by and my weight shot up to 182. Once again, I went back to OTC diet pills, speed walking, plain salad, SlimFast and Lean Cuisines. Nothing happened (except the diet pills made my skin feel like it was burning). Then I entered into a stressful situation and I didn’t handle the stress as I had before. In the past I had always faced any stressful situation head-on and had always “kept my cool.” I believe that everything in life happens for a reason, so I had never “stressed out” before. This time I became very agitated, my short-term memory started failing, I started having trouble sleeping, I started getting very hot at night, I paced, my heart would race, I couldn’t keep food in my system, and I shook a lot. My weight dropped to 159 without any effort from me. After the stressful situation had passed it took a few months before my weight started increasing again – before the blink of an eye I was up to 190. The problem was (in addition to more added pounds) more “symptoms” were added. My toes started going numb, my shoulders started aching and going numb too (like I had a pinched nerve), and my hair became knotted severely on the right side of my head. I started having trouble with pain in my jaw and cheekbones and thought maybe I was grinding my teeth in my sleep. I went to the dentist and he looked at my teeth but said I didn’t have any extra wear to the teeth so I was not grinding them after all. I started back on yet another diet and exercise program but it was very apparent that something was wrong. I could not walk around the block without getting out of breath. It felt like I had an elephant sitting on my chest -- my lungs would ache. I would force myself to walk around the neighborhood but I would come back feeling utterly exhausted. This made me angry at myself – how could I have gotten so wimpy? On Easter I decided to wear my hair up for the first time in a long while (my hair had become so dry and unmanageable that I had stopped trying to do much with it). My Mom noticed I had a hump on my back. I had not noticed it before because I always wore my hair down and thus it was always covered up. I decided to go see another endocrinologist and made a two-hour trip to see one. He took one look at me and said I had all the clinical symptoms of Cushing’s. However, after tests were done I was told (yet again) that nothing was wrong. My plasma cortisol was a 14 (normal 2-12) and my ACTH was 51 (normal 10-52). It was then suggested that I make an appointment with their in-house nutritionist. I never went back.

Several months later I started getting more new “symptoms.” Crushing rib pain, back aches, headaches that never wanted to go away, severe leg cramps, bouts of bronchitis, swelling so severe that I couldn’t put my feet into my shoes, migraines, visual and olfactory disturbances, strange red splotches on my skin, facial numbness, and an unusual skin odor (smelled like wild onions). For some reason I thought of the word I had heard years before – “Cushing’s” and I started doing research on the internet. I was floored. I had ALL the symptoms! Then I found this website and started reading the bios of those diagnosed with Cushing’s and it was just like reading my own life history. There was no doubt in my mind – I knew I had Cushing’s. I started doing research on hospitals and doctors familiar with Cushing’s and decided to make an appointment with the Pituitary Center at Vanderbilt. I was given three tests – the 24hr UFC, the dex-CRH suppression and the salivary cortisol.

The first two tests came back normal but my salivary cortisol came back showing that I had lost my diurnal rhythm – a hallmark of Cushing’s. A month later (November, 2002) I had an MRI and it showed a 3mm pituitary tumor. I was diagnosed as having Cushing’s disease on January 3, 2003. My pituitary surgery was at Vanderbilt on February 18, 2003.

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