Thursday, March 26, 2009

Jada (Jada71), pituitary bio

My name is Jada, I have been married to a wonderful man for 10 years and we have 4 beautiful children, a daughter who is 17 and three sons ages 12, 7, and 5. I have been an ER / ICU RN for 16 years and loved my job. Since childhood I was always healthy and active, I was never overweight and there was no obesity anywhere in our family. I maintained an average weight of about 98-102 pounds until my last child was born (I weighed in at 112 pounds at my first pregnancy checkup with my fourth child). I had always gained more than the reccommended weight in each of my pregnancies, but bounced right back into shape within 5-7 months. I maintained a healthy diet and was always active, but I never had to work at maintianing my weight.

Shortly before I became pregnant with my fourth child, I developed severe anxiety and panic attacks. I was put on benzodiazpines which relieved most of my anxiety symptoms. After I gave birth in February 2004, the weight quickly began to fall off but I noticed I was fatigued most of the time, I associated this with being a new mom again and having 4 children to look after. I also had no libido, and when I mentioned these problems to my doctor he said it was normal hormonal chages after having a baby.

In September of 2005, we were moving into a new house and I noticed that I was having a difficult time carrying even the lightest boxes and I had also developed very large supraclavicular fat pads. I had also gained 45 pounds over a four month period even though my eating patterns and activity had not changed. My fatigue was getting worse and my libido had still not returned. I was having hot flashes and night sweats,my face shape was beginning to change, my anxiety became worse and I was feeling depressed. I made an appointment with my primary care physician and was told that I need to go on strict atkins diet and to excercise regularly, then I was handed a prescription for Lexapro.

By 2006 I was excercising religioulsy, counting every calorie and resorted to diet pills. Then I began experiencing joint stiffness, pain, nausea, and recurrent yeast infectons. I made another appointment with my OB / GYN and was told I was getting older and my metabolism was slowing down - I was only 33. My other symptoms were dismissed and never addressed. By mid 2006, I had ramped up my exercise regimen and developed shin splints. I also almost overnight devloped a severe case of heartburn, it became so bad I had to sleep sitting up. After another visit to my doctor I was given Nexium, which did little to help. By this time, despite dieting and intense exercise I had only lost 25 pounds. My abdomen was so round and flabby, I decided to have a tummy tuck with full muscle repair. I was able to maintain this weight loss for about 7 months, then it all quiclky piled back on. By January 2007, I was no longer sleeping at night, however I was sleeping almost all day, I developed edema in my legs and hands, I sweated profusely and spontaneously, and my libido was nonexistent. I went back to my OB / GYN and was given diutetics, more antidepressants, and birth control pills, even though my tubes were tied. I was told, at the age of 36 and no previous reproductive health issues, and 4 healthy pregnancies, that I had PCOS. It seemed like an odd diagnosis for someone with my history, normal laboratory findings and no cysts found on my ovaries via ultrasound, but I trusted my doctor and continued to follow his plan.

Over the year, new symptoms began arising; I developed persistant diarrhea, a severe skin rash accompanied by urticaria, migraines, menstrual irregularities, breast enlargement with constant tenderness, plantar fascitis, recurrent upper respiratory infections, low back pain, dry itchy thin skin and new stretch marks. I was having memory lapses, forgetfulness, irritability, flushed face and neck, excercise intolerance, abdominal pain, throbbing flank pain, extreme sudden crashing fatigue, difficulty concentrating, trouble finding words to express myself, acne, chronic sinus infections, a hump on the back of my neck, kidney infections, high blood pressure, periods of rage followed by inconsolable crying, and frequent burning headaches. I went back again to see my OB / GYN and was told there was nothing wrong with me, except that I had PCOS. I decided to get another opinion. After spending about an hour with my new doctor and going over each of my symptoms, she said , "I think you may have Cushing's Syndrome". I immediately went home to begin research and identified with each and every characteristic of this disease. It was a relief to finally feel validated and to have someone believe that, in fact, I was not well. She ordered a 24 hour UFC, which came back at 44 (upper limit 50), but we both were not ready to give up on this diagnosis.

I was sent to a local endocrinoligist for further evaluation. I had made a binder with my medical history, symptoms, before and after pictures, and lab results I had done over the last year. He came into the room, and before examining me or seeing any labs, told me "You don't have Cushing's Disease, you have psuedo- Cushing's caused by insulin resistance." I asked how he knew this and he replied, "Because it's too rare and too hard to diagnose." I asked him to take a look at my before and after pictures, my stretch marks, my fat pads and my humps, he then conceded it could be a possibility but highly doubtful and to not waste my time researching Cushing's. He gave me a presciption for Byetta injections and I was able to talk him into giving me a lab requesition for a midnight serum cortisol. The Byetta injections did nothing for me, but my midnight serum cortisol came back at 9.3 (range <0 -3). He declined to see me again and I promptly made a phone appointment with Dr. Ludlam in Seattle after reading some of his articles on Cushing's Disease.

During this time, my life became almost unbearable. I could no longer do the things I used to do. Each and everyone of my symptoms worsened. I would sweat so profulsely that I could not put make-up on (which is pretty important to us southern women). Climbing stairs became a daunting task, my muscles became so weak that I could not lift laundry baskets, or lift loads of clothes to the washer or dryer, I couldn't open jars, climb on a step stool, my legs would become fatigued when I tried grocery shopping I couldn't push the cart, I couldn't hold the hair dryer long enough to dry my hair, standing for even short periods of time made my lower back ache terribly. I couldn't push the vacuum cleaner or mop, using the bathroom was difficult because my legs were too weak to stand up (and using a public restroom was impossible since I no longer had the strength to "hover"). Climbing into my bed or getting up from a chair required help from my husband, even lifting my binder I had made for my medical information took the effort of both arms. Most sadly though, I couldn't pick up and carry my children to bed or to give them a hug. I couldn't sit on the floor to play with them because getting back up required more strength than I had.

More symptoms began to appear such as hair growth on my face, I developed infections with high fevers, my scalp, neck, and face were extremely oily while the skin on the rest of my body flaked off with ease. I had excruciating joint and muscle pain that left me bed bound for days, muscle twitching and tremors became severe, I was gaining more weight although I had persistent nausea and no apppetite. I became socially isolated, depressed and apathetic. My quality of life was failing quickly and my marraige and home life was under so much strain. I couldn't attend school functions with my children, cook meals, or just enjoy spending time with my family. Many days, I felt as if I just couldn't go on feeling so sick all of the time. I even had to suspend testing for Cushing's for 8 months because I was so ill with infection after infection and unbearable pain.

Once I was finally feeling as if I could test, I began getting some high numbers on my ACTH, serum cortisol, salivary cortisol, and most importantly 24 hour urinary free cortisol collections. I had some that were low, and I had some that were extremely high. I realize that some doctors do not believe in cyclical Cushing's, or that you can have high 24 hour UFC's interspersed with lows. I firmly beleive that one can have some lows along with some high results and still have Cushing's Disease. I believe this is a direct indication that pituitary tumors can cycle, or turn on and off, just as every other endocrine system in the body does.

I am grateful to finally have a firm diagnosis and am preparing for surgical treatment to remove my tumor. I am ready to recalim my life and return to being the mother and the wife I once was. This disease has the ability to destroy so many aspects of one'e life. The fight to prove your diagnosis and recieve the treatment is long and arduous, but in the end it's worth every ounce of energy you can invest to prove, it is, afterall, "all in your head".

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