I use to wonder how many diseases it would take before I’d be placed into The Guinness Book of World Records. In nine years, I’d been diagnosed with clinical depression, high blood pressure, type II diabetes, PCOS, endometriosis, obesity, adult cystic acne, ocular hypertension leading to possible glaucoma, sarcoid uveitis, metabolic disease, and panic attacks. This is the same person who just a few years prior had been a cheerleader, worked out sometimes twice a day, taught Jazzercise, and used free time biking, walking or roller blading along the lakefront downtown Chicago.
When I was thirty, I was the healthiest I had ever been. That next year, I sold my Jazzercise franchise and just thought I was gaining a little weight because I wasn’t working out as much. As the weight continued to advance, I rationalized that it was only because it was winter in Chicago and I wasn’t as motivated to work out as hard. During the next year, I was sleeping all of the time and when I wasn’t sleeping I was crying for no reason. I made my way to a psychiatrist and was diagnosed with clinical depression. She said it must run in my family somewhere and I should combine medication with talk therapy. I was given a prescription and sent to a recommended psychologist to talk. After three or four sessions, it was evident I was not hiding any dark secrets and I was sent on my way being told I was the “happiest depressed” person she had ever treated.
In the meantime, I was developing cystic acne all over my face, chest, and back. I went to a dermatologist and he said even though I had rarely had acne as a teen, it was very common among “middle aged” women. He prescribed antibiotics and again sent me on my way, but I could never get over the fact he thought thirty-two was middle aged. My periods came multiple times a month, or not at all but always with intense cramping. I have no idea how many different Ob/Gyn’s or just doctors and specialists in general I have been to in nine years; it’s just too numerous to count. I do know I’ve been on every birth control pill and shot there is to regulate me, and had two surgeries for endometriosis that found nothing. Also, I was now on high blood pressure medicine because one of my Ob/Gyn’s said my numbers were so high she was afraid to let me leave her office. She encouraged me to try harder to lose the weight so it would get back to a normal range.
I was using my doctor of internal medicine as my GP, and I was always sharing my concern about my weight and all of my problems. Every time he would run my A1C to check my blood sugar it was getting higher and higher and I would tell him I had not changed anything. He always said it was just a “high normal” and we would watch it. Again, I was encouraged to work out and really watch my diet. What diet? I didn’t know barely eating and still getting bigger was considered a diet! I remember telling my family and friends over and over that no one was listening to me and everyone was just treating the symptoms and not looking at the big picture. No matter what type of doctor I went to, I was told to lose weight, try harder, and I may have to accept my “problems” and just live with it. Every office I left, I could tell they had summed me up as a premenopausal female who was a “closet “overeater, and unwilling to accept I wasn’t a teenager any longer.
My hair was coming out in handfuls, and my acne was so bad I decided to go on Accutane to try and clear up my face. A few months later I was hospitalized for what I thought was a heart attack because I was having palpitations that were so hard I could not catch my breath. It was the beginning of the panic attacks that my psychiatrist said was due to my history of depression and probably brought on by the Accutane. I was referred to my first endocrinologist who told me I had Metabolic Disease, I would not lose the weight and he would just have to control my symptoms the best he could. Needless to say I was not going back to him, but when I went to my parents for the holidays his office called and said this Dr. insisted I be placed on blood sugar medicine immediately because my numbers were so high, and he could not believe I had not been placed on it sooner.
I began to see articles about a syndrome called PCOS. When I researched it, I thought I had found my answer to ill health. By now I was exhausted at the thought of telling my story again to yet another doctor. I called the endocrinology dept. at a major teaching hospital and they did not hesitate on whom to recommend. The head of the dept. specialized in PCOS. It took me six months to get in for my first appointment, but like all of the times before I had a renewed hope someone would not only listen, but also hear what I was saying. I was now becoming very weak, and had many other symptoms. I had electrical pulses that would go up my legs and twice my feet swelled so badly I could not stand on them. Two eye doctors were treating me and a retina specialist for what I was told was sarcoid uveitis, and ocular hypertension, which was high pressure behind my eyes. My ophthalmologist said the sheathing she saw around my eyes was what she might see in an eighty or ninety year old. I constantly had a dizzy/ vertigo feeling but always read 20/20. I didn’t even recognize the person looking back at me in the mirror and was trying to work full-time and over-time as an international flight attendant, which is an extremely physical job not to mention the sleep deprivation. I assumed the reason I had only slept a few hours a night for years was because I was constantly messing with my circadian rhythm. I was tired and fatigued all of the time but knew I had to work.
My appointment finally came, and she concluded I did have PCOS and put me on yet another pill for the abnormal hair growth I was now having in places I didn’t know a female could grow hair. I was now taking eleven pills a day and placing drops in my eyes for ocular hypertension to hopefully prevent nerve damage and stop me from developing glaucoma. I didn’t really “click ” with this doctor’s ego, but surely the head of the dept. would figure it out. After about eight months I was not getting any better and was convinced there was something more. She sent me to a diabetic nutritionist, and also had me do a sleep test for possible sleep apnea. I kept getting bigger and bigger, and she suggested at one visit I might want to consider weight loss surgery. I then flew with a colleague who suggested I do a saliva test because it was more accurate in hormone levels. I did my own saliva test and when I got the results, everything was abnormal. However, the hormone that was off the charts was, you guessed it, the cortisol. I presented this to my doctor and she somewhat dismissed it but agreed to rule it out. I now began the series of cortisol testing, and after researching this hormone I came up with Cushing’s Disease. Not once in nine years had one doctor even mentioned this was a possibility. At each visit I would bring up Cushing’s and she said I most likely didn’t have this because it is so rare, and my cortisol tests were probably coming back abnormal because I was a flight attendant.
I was becoming very panicked now because I could tell I was getting very sick fast. I had developed a buffalo hump, my skin was bruising very easy, and my face looked like I had a third degree burn. I returned for a visit and she took a tissue to my face and had the audacity to ask me if I just had a lot of makeup on! I had been complaining for years about sweating and she said it was because I was obese. When I told her it was just my face, she said I was just hot natured. The cup size of my bra stayed a small B, yet I was now a 42 around. She and her student didn’t seem to find this odd. I again really pushed the idea of Cushing’s and she literally snapped at me and said, “Cushing’s is not a disease you want to have. It is very serious.” I explained I didn’t want to have any disease but I had every symptom. After two years with her, and a total of nine years later, I demanded she do an MRI. She crossed her arms and said yes as if to prove me wrong. I had a brain and abdominal MRI in July of 2006, and have never heard from this doctor again! She had her intern leave the information on my answering machine that indeed a tumor was found on my pituitary. No matter how unprofessional this was I have never felt so validated in my life.
I then went to Milwaukee to see Dr. James Findling. When he walked into the room he said he was 99.9% sure I had Cushing’s just by looking at me. I was terrified to have the Petrosal test because my doctor had told me it was highly invasive and had a high risk of having a stroke. Who would ever want to sign up for this? When the surgical radiologist came in to greet me, he said he knew of no one having had a stroke. The IPSS test was not fun, but at this point I could not stand from a sitting position or walk up stairs because I had pretty much lost all of my muscle and soft tissue. The test was successful and finally two weeks later I met with neurosurgeon Dr. Ivan Ciric. He was very comforting and said he had a good feeling about my surgery. He promised me he would do his best to get just the tumor and leave the pituitary. Finally, on November 16, 2006 I had an 8mm tumor removed from my pituitary gland, and yes I still had my gland. He is truly my first hero who gave me a second chance at life. My second hero is definitely Dr. Peter Kopp who is now my endocrinologist. He did an amazing job of weaning me down off of the oral cortisol and constantly reassured me to be patient and everything would slowly get better. He is so supportive, and is the first doctor I’ve had who actually listens to me and hears every word! My pituitary began to function after nine months and I am now off all medication. I am now fourteen months post-op, and I have lost all of the weight plus more. I am 5’1 and at the time of surgery weighed 206 pounds and was a size 22. I now weigh 124 and I am back to a size 5/6. I feel pretty good except for some aches in my lower back that don’t want to subside, still have cloudy thinking, and my muscles don’t seem to want to get stronger no matter how much I work out.
I know we all have similar stories, and it is so important to be an advocate for your own health. However, when ill health lingers for years, and you are made to feel “crazy” by so many professionals who are suppose to be helping you, it is sometimes hard to find strength to keep fighting. I am amazed that more doctors are not screening people for this disease. If it were not for this support group most people would not know it exist, which is why it is so important to get the word out to doctors and the public. No one I know had ever heard of this disease including myself. It took away a total of ten years of my life, and I hope this story can help others not give up and find a renewed sense of hope. I know my life is changed forever, but I truly feel I am better and stronger for this. I definitely don’t sweat the small things now!
Newsletter: Spring, 2008