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I'm a new member of CSRF, and this is my Cushing's story! I had always been an active person. I danced, was in the marching band's color guard, participated in school musicals. I had lots of energy, and a very fast metabolism. I could eat whatever I wanted and at 5 feet 9 inches, stayed at 130 pounds. I slowed down a bit in college. They didn't have a marching band, and it was harder to get into the drama club. I gained the typical "Freshman 15," and then some. After college, I joined a gym. My boyfriend and I started a diet together, in which we cut out refined sugar and carbs. I got back down to 145 pounds. And my boyfriend proposed in November of 2003.
In June of 2004, I started to experience what I would later learn was depression. I didn't want my fiancé to touch me. My skin would crawl. I lost interest in things I had loved, including my job as a graphic designer. I quit and enrolled in culinary school. The doctor put me on Lexapro. In July of 2004, at my lowest weight of 140, I ordered my wedding gown, a beautiful strapless dress that my mother-in-law said was "made for me." But as fall started, I lapsed in my diet. Being around sweets all day at school didn't help. I was exhausted all the time, and rarely made it to the gym. My dress arrived in January of 2005, and I went and tried it on. I was a bit tight. But it looked fantastic. By then, hair had started to grow on my chin. At first, I ignored it. My hair was such a light reddish blonde that I thought nobody would notice. Later, my mom asked when I was going to do something about it. I shaved it off. It came back, darker and thicker, and spreading each time.
Around October of 2005, I started to have trouble sleeping. I thought it was the stress of the wedding. I would take a double dose of sleeping pills every night. I continued to gain weight. My mom even asked if my dress was going to fit. I went to try it on in November, three weeks before my wedding. They couldn't close the zipper -- there was a 4-inch gap between each side. They had to rush-order extra fabric to altar my dress so it would fit. I was so embarrassed. After the wedding, my periods stopped coming. I consulted an ob-gyn. After she ruled out pregnancy, she commented that I might have Poly cystic Ovarian Syndrome (PCOS). I went to a reproductive endocrinologist in April of 2006, and he confirmed it.
After reading up on PCOS, I asked to be tested for diabetes (which is a common side-effect of PCOS). Before even testing me, the doctor told me I didn't have it. I insisted. The test confirmed I was pre-diabetic. He put me on Metformin.
In September of 2006, my dad had on the Channel 10 news. It wasn't his station of choice, but nothing else was on. They were airing their nightly Health Report, which my dad usually ignores. But they were talking about a woman who had Cushing's. Dad looked at the woman, and at the list of symptoms they had on-screen. He called me into the room. "She looks like you. I think you should see a doctor." I went with my husband to a new primary care doctor that he was going to meet. The doctor saw my husband first, and then called me in. I showed him my list of symptoms (a full page long), and told him my concerns. "Oh, you don't have Cushing's. That's so rare." He did an exam, and diagnosed me with depression and anxiety, and high blood pressure. I had not known my blood pressure was high. It was yet another symptom of Cushing's. He put me on Diovan and Toprol. I saw this doctor every two weeks for 4 months -- "for a blood pressure test," he said -- and he diagnosed me with every other disease under the sun -- Metabolic Syndrome, Exhaustion, Thyroid disease, even Early-Onset Parkinson's. He also pushed me into a study by a hospital on Depression and Anxiety. They did a urine test to make sure I was healthy. It showed high levels of cortisol. They admitted me to the study anyway. They took me off Lexapro. They put me on an anti-psychotic called Geodon.
In November of 2006, he ordered an ultrasound of my adrenal glands. Nothing there. The primary care doctor sent me to a neurologist in early December of 2006 to rule out Parkinson's. The neurologist talked to me about my symptoms and said, "He doesn't know what he's talking about. Get thee to an endocrinologist." The endocrinologist couldn't fit me in until late January of 2007. In the meantime, the conductor of the study was weaning me off of the Geodon, so that I was not on any medication to control my anxiety or depression. I relapsed SEVERELY, and truly wanted to die. I thank God I was too frightened of pain to do anything to myself. They quickly put me back on Lexapro AND Geodon.
When I finally saw the endocrinologist with my list of symptoms, he cut me off before I finished. "You have Cushing's." I wanted to either slap myself or the primary care doctor, or both. He told me I should see an endocrinologist at one of two hospitals. Ironically, I chose the one that had conducted the Anxiety and Depression study. The doctor ordered a battery of blood and urine tests. They came back indicative of Cushing's. So he ordered me to do them again, as well as saliva tests. I was very upset that I had to go through so many rounds of testing. An MRI in April of 2007 was inconclusive. There was no tumor evident. So the doctor recommended that I have a procedure called Inferior Petrosal Sinus Sampling. The Wednesday after my best friend's wedding, I went to the hospital. I don't remember any of the procedure, except for a nurse repeatedly telling me to lay still. I laid flat on my back for four hours afterward while my husband fed me Cheetohs.
The results came back that I had a tumor on the right side of my pituitary. And in fact, upon much closer inspection, there was a tiny shadow there on the MRI. In June of 2007, I met with the neurosurgeon, who scheduled my surgery for the end of July. He went over his role in the surgery. It went in one ear and out the other. OK, you're going to operate. No big deal. On July 3, 2007, after Bob and I signed some paperwork, and gave our realtor the first $1,000 towards our first house, we came home. I came up the steps, and felt dizzy. Before I could sit down, I collapsed. I fell down the stairs. My mother called 911, and they took me to the local hospital. We told them that I had Cushing's disease, but they said it had nothing to do with my blackout. They did a CT scan of my head, looking for damage from when I fell. They tried to take blood 12 times, but nothing would come out. I finally had enough. They told me I had "exhaustion," and to stop taking my blood pressure medicine.
On July 5th, I met with the ENT who would assist in the surgery to remove the tumor. For some reason, I listened to him a bit more closely, especially when he said that there is a risk of death. I asked how many had died. He told me that he and the neurosurgeon do this surgery together many, many times each year, and had done so for four years. The only patient they ever lost was a man who had undiagnosed blood clots in his lungs. OK. I felt better. That following Monday, I went to work. Again, I felt dizzy, and before I could sit down, I collapsed. They called 911. This time, I turned noticeably blue. When I came to, I couldn't catch my breath and was coughing. I was taken to a different hospital since I worked in another state from where I lived. These doctors were informed that I had Cushing's, and they called my doctor. At his request, they did a CT scan of my chest -- and found massive blood clots. Hmmm.... the same thing that killed the man on the operating table. I was admitted to the Critical Care Unit and put on Heparin. They ultrasounded my legs and my heart. No clots in my leg, but my heart looked "stressed." They told me my only option was a drug called TPA - tissue plasminogen activator. A "clot-buster" that could also potentially cause serious internal bleeding, leading to paralysis and death. I decided to request a transfer to the hospital that was treating the Cushing's disease. They told me that TPA was NOT a good option. Once I was strong enough, they wanted to discharge me with blood-thinner injections and allow my body to clear the clots on its own. In the meantime, my surgery was cancelled.
My "team" of doctors - my endocrinologist, neurosurgeon, pulmonologist, and hematologist - discussed my case. The endocrinologist and the neurosurgeon believed I only needed 3 months of blood thinning therapy. The pulmonologist and the hematologist believed I needed 6 months. Nobody could agree on what caused the clots. I had no genetic disorders that would cause them. I was not on birth control pills, I did not smoke, I was not entirely sedentary, and I had not taken any long flights recently. The doctors finally agreed on 3 months of blood thinning therapy. At which point, 4 months had passed. They scheduled my surgery for December 17, 2007.
Looking back, I'm almost glad this happened to me. I had such a carefree attitude about my surgery. I didn't understand the seriousness of it. The waiting from July to November gave me time to read about the surgery process, and talk to others about their experiences. I found a Cushing's Support Group in my city. I stopped injecting myself with blood thinners on December 15th. On the 16th, I was admitted to the hospital, had an IV placed and was started on a Heparin drip. The drip was stopped at 6 a.m. My surgery was scheduled for noon. I was wheeled down at 11:30. I remember being placed on the table, and sticking my arm out to the side for them to place more IVs for surgery (all in all, I had four). I didn't have a CSF leak, so I didn't get a fat graft. During surgery, the neurosurgeon found a "suspicious mass" on the right side that he sent to Pathology. He went to the Family Waiting area to tell them what he found, and what would happen next. He explained to them that having Cushing's is like being on speed, and I would go through very real withdrawal. My parents looked at my husband and said, "Have fun with that."
I don't remember anything after I went under that until the middle of Monday night, when I woke up with packing in my nose, having a panic attack because I couldn't breathe. They kept me on Xanax for most of my hospital stay. I don't remember being in much pain. I think having the packing out was the worst. So much fluid came out behind it, I nearly threw up. I was discharged the Thursday following my surgery. I wasn't allowed to bend over, blow my nose, or pick up anything heavier than 5 pounds. Two weeks later, the day I had my stitches and stents taken out, I drove myself to the ENT's office. They pulled out the stents - OUCH! - and then suctioned out my nose. Then they started to take out the stitches. And I started to get dizzy. I almost fainted. My blood pressure was very low. When it took a long time to come back, and then dropped again when I sat up, they sent me downstairs to the emergency room. I was there for two hours, refused IVs and fluids, and it gradually came back up on its own. My hands were still sore from the four IVs from surgery. They started me on 50mg of hydrocortisone 3 times a day. I very gradually stepped down, by 2.5mg at a time, and was still severely nauseous. I had to re-start injecting myself with blood thinners on Christmas Eve. On New Years Eve, I was working on a wedding cake for a client (I had agreed to bake the cake before I had even collapsed, by which point, it was too late for her to reschedule with another baker). I was so caught up in the cake that I forgot to take my steroids. I felt so ill I thought I was going to die. My doctor never warned me about Adrenal Insufficiency, or else I might have known that I COULD have died. By February, I looked less "puffy." In March, my period returned. By April, I had lost 40 pounds. My blood pressure was much lower, and I stopped taking Diovan. By May, I stopped taking Metformin. My ACTH levels and thyroid tests were normal. But I wasn't making any cortisol. In June, I had a follow-up MRI, which looked normal (but then again, so did the initial one). I had lost another 20 pounds. In July, I was allowed to stop the blood thinner injections. I think this made me the happiest of all. I also started to wean off the Geodon. In September, I weaned off the Lexapro, and stopped taking sleeping pills every night.
In early December, I finally had a detectable cortisol level: 3.2 (the doctor said 18 is ideal). A Dexa scan showed that my bones were still not optimal. In February, the cortisol was 6.5, and in May it was 14.8 and a second Dexa Scan showed that my bones were thickening. I'm also down to 158 pounds. I thank God every day for the little miracles that helped me discover what was wrong with me, for my friends and family who supported me, and for the fact that I survived this ordeal.
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