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| My story begins a lot like yours. After my 5th child was born, I lost little of the weight. A few months later, my cheeks started turning red. I went to a dermatologist who first thought I had windburn, then dry skin, and finally rosacea that didn't respond to treatment for two years. I finally told him I wanted laser surgery to get rid of my red face. The second dermatologist said, "What did the other doctor say you have?" Summer came and I got chest pains from the heat. I went to my primary doctor and my blood pressure was 190/90 and was never elevated before. After several checks, my doctor decided it was "nerves!" I switched clinics because I knew it wasn't "nerves." I ended up with a new doctor who went ballistic over my blood pressure, which was now 200/100. He didn't care about the "trivial" infections, the weight gain or red face. But, since he was very concerned about the blood pressure, I kept going. He sent me to a cardiologist, Dr. Gregory Schuchard from St. Lukes Medical Center. He told me that this pressure was way too high for a 37-year-old. He noticed the other symptoms and suggested I do a salivary cortisol test done by Dr. James Findling at St. Lukes. He mentioned Cushing's Disease, and when the results came back, it was so elevated, I had to look it up in my medical book. Unfortunately, I couldn't see Dr. Findling, an endocrinologist because of my HMO. I got sent to an endocrinologist in my plan who did a 24-hour urine test that came back negative. He told me I did not have Cushing's (it's too rare) and to go back to my primary doctor. Well, I switched clinics again. I couldn't get it out of my head that this salivary cortisol test was so elevated and I had all these symptoms. I kept praying for answers and I would not give up until all the doors were closed. I went to another endocrinologist who knew Dr. Findling and said this test is accurate. So we did another 24-hour urine and it came back negative again. I was so upset and he told me my infections were because I got too upset and my blood pressure was high because of nerves. I asked, "Why then do I have black hair on my chin? Why do I have sores and bruises all over?" He was really annoyed that I was still there. I asked for another 24 hour urine and another salivary cortisol test and he ordered them with my insistence. I really was losing hope. A nurse told me one elevated test doesn't matter, so I was losing it all. I went back a few weeks later for the test results. My salivary cortisol was the highest they've ever seen. He asked me bluntly if I was using Prednisone. He told me to admit it! After that, I knew I couldn't go back to him. I went to my new primary doctor, Steven Holcomb. I explained my situation and I felt he really believed me. He said to let those others run their tests and the truth will be known. He gave me a referral for Dr. Findling. I was so happy to finally see the endocrinologist where this salivary test came from. I was also scared. I would finally know if I did have Cushing's. I met Dr. Findling at St. Lukes Medical Center on Sept. 30, 1998. When he came in, he made small talk but looked right at my face. He told me he thought I had Cushing's, but more tests were needed. The 24-hour urine came back positive and they think I have a defect in my salivary glands making the salivary cortisol so high. My first surgery was on Jan. 7, 1999. Since my petrosal sinus showed pituitary, I saw Dr. Ed Laws in Virginia. I had to go before a board to convince my insurance that he is the best neurosurgeon for me. Dr. Laws found what he thought were two tumors, but my cortisol levels still remained high. So, on Jan. 14th, he removed my whole pituitary. Numerous infections and adjusting to all my hormonal drugs have made this eight months very long. I find that I still get sick easy and stay sick longer. I am very tired. I have lost 50 pounds and have the other 50 to go. My face seems not so red, and at least I'm not Cushingnoid anymore, although some of my symptoms seem to be returning. I'm on Cortef 20mg daily, Synthroid, and just started my growth hormone Genotropin. I'm having some trouble with the female hormones. Being cortisol dependent takes a lot of readjusting. I find I have to educate doctors who don't know the endocrine system. It's hard after these surgeries. Everyone thinks you're well. You want to scream and say "This isn't appendix surgery!" I'm a believer that things happen for a reason and God must think I can handle all this or it wouldn't have happened. I'd like to thank Dr. Schuchard for seeing something in me no one else had seen, Dr. Holcomb for believing in me and Dr. Findling for helping me through this long road, as he calls it. Without these doctors, I'd still be searching for answers. I also want to thank Louise Pace and the Cushing's Foundation, for if not for her, I'd still be listening to those other doctors who said I had everything but Cushing's! Remember that you know your own body. Don't ever let anyone tell you there's anything wrong when you know there is. I would really like to hear from anyone who can relate to my story. |
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