And It's About Time There Was Some Support For Cushing's!
In 1989 I met and married my husband, Hilary. We have no children. Shortly after we were married, we began infertility testing and discovered I had fibroid tumors. The doctor scheduled Laparoscopic surgery to remove them, but then I got pregnant. We were so excited – I was 37 years old. 8 weeks into the pregnancy I miscarried and was devastated. Also, by that time we discovered that the insurance we were on wasn’t paying for all the medical treatment I was getting, and with the loss of the baby and the bills coming in at the same time, I just gave up on any more treatment.
By the time I was 38, my periods, which had always been regular enough to set my watch on, started to get funny. I would miss 1 or 2 months at a time. I kept running out and getting pregnancy tests. My husband brought home a book from the drug store on perimenopause and it described some of the symptoms I was having, so I just dismissed the sweats and irregular periods and didn’t worry much about it. Around this time my skin began to show changes. I had always had oily skin, and now it was dry and flaky. Then psoriasis. First just a few patches on my legs – then it went into full bloom over all of my body. At least 60% of my body was covered with plaques at all times. I looked like I had leprosy. I was having occasional palpitations and dizzy spells - sometimes a lack of coordination and balance. My mind was getting fuzzy. My back hurt all the time.
Having always battled with my weight, I had just lost nearly 75 lbs. with Weight Watchers, and for a short while maintained at around 130. But as always, the weight began to creep up on me again and I went back to WW for awhile. Then, in 1994, I quit smoking and gained 40 lbs. in 4 months. In December 1994 I weighed 195 and was 40 years old. It took little time to cross that 200 mark again, and back to WW I went, but this time is was a terrible struggle to lose 20 lbs. – it took forever - and I got discouraged. For the next 5 years, my weight fluctuated between 205 – 215.
My blood pressure at some point began to go up, as well as my cholesterol. I ate lots of fruits and vegetables, skinless chicken, turkey masquerading as other forms of meat, tofu, fat-free whatevers, olive oil only, diet this-and-that. I ate high-carb lo-fat, and high-protein lo-carb. I did Atkins, Sugarbusters, and something called the DASH diet. As I pointed out to my MD a short time ago while reviewing my chart, my average weight for the past few years was 208.
In 1997 I began noticing I was getting "Jowly". Just another sign of approaching menopause I figured. The jowls began to grow and felt "funny". Sometimes I felt tingling or numbness in my face.
My feet hurt. I wasn’t able to wear regular shoes because no matter what I put on my feet, they hurt. My toenails suddenly were ingrown and painful. My feet were swelling up. I didn’t notice the swelling at first, but I think that’s what made my toenails ingrown.
Early in 1998, my mother suddenly and unexpectedly died. The following month I had to hospitalize my husband, who is bi-polar, for suicidal depression. When he returned to work in April, he worked three days and then quit his job of 23 years. Shortly thereafter he applied for and got on SSDI, leaving me the responsibility of bringing home the bacon as an administrative assistant for a CPA, as well as taking care of most of the responsibilities of running the house and handling the finances. My stress, fatigue, and resentment levels were running high. I was more easily agitated and getting bitchier all the time. We stopped sleeping together. And my face just kept getting fatter.
Later that year, during a visit to my bother’s house in Denver, I stepped off into his sunken living room and broke my right foot and fell. I was really tired. My foot wasn’t healing very fast, and I barely had the strength to use the crutches. You really don’t know how much you really weigh until you have to use crutches. I kept working, though. Had no other choice. Around this time my psoriasis suddenly disappeared. Now I was getting these funny bruises and blood spots right under the surface of my skin on my forearms. They would just appear – sometimes if I rubbed up against a doorframe, or the strap of my purse would rub it, or from reaching into a paper bag. Sometimes they would bleed through the surface. I developed a red "V" on my chest.
In September of 1999, while beginning my day at work, I was hit with severe chest pain. The office called 911 and I was rushed to the hospital, where they did a series of tests to see if I was having a heart attack. I wasn’t, but they kept me monitored overnight and scheduled a stress test for the following day. My blood pressure was really high. It was a teaching hospital, so there was always a steady stream of Doogie Howsers coming through asking me all the same lame questions. After the x-rays and scans and the stress test which I couldn’t complete because I couldn’t keep up with the treadmill, they gave me a turkey sandwich and told me I could go home. While waiting for the "official" discharge, another doctor came in to see me. He asked me if I always had these "chubby cheeks". I told him no, and he never elaborated on why he asked. I left the hospital with some medication for my asthma, and an order to lose some weight.
When I saw my doctor after that, she put me on medication for my blood pressure – atenolol and hydrochlorothorazide. She ordered an upper GI where they found duodenal ulcers and a hiatal hernia and gave me Prilosec. She gave me the DASH diet. I tried Weight Watchers once again.
Approaching 2000, I was feeling so old. I could barely walk sometimes. I had two toenails removed. My back felt like it wanted to collapse. I was in constant pain every day, and somewhere along the line I realized I couldn’t get up if I squatted down. I could no longer sit on the floor to watch TV, or get on my hands and knees for anything. And while I wasn’t gaining any weight, my clothes weren’t fitting right. I couldn’t button my jackets or blouses. I couldn’t suck my belly in anymore. And this face. What started as jowls and a double chin now seemed so huge. And I could feel it. Sometimes it felt like a sponge. And I had trouble looking up – all this fat on the back of my neck. I was getting disgusting. Then one night it felt like the skin on my belly was ripping. My feet and ankles were swelling up more often. I was having palpitations again, and the doctor ordered a 24 Holter monitor. There were only 2 little episodes that they told me not to worry about. Throughout 1999, I think I had 2 periods, but then in 2000 I started having some irregular bleeding – nothing scary – just annoying. So in May I had a D&C that seemed to take care of the problem. My GYN put me on estrogen and Provera. I immediately gained 10 lbs. I started to have daily sweats – profuse. Like rain it would just pour off my head.
Then I broke out in shingles. The doc put me on several medications, one of them being prednisone. I blew up like a balloon! Plus, I got just about every side effect you can think of . I would rather have had the pain of shingles (which in my case wasn’t very much) than what I went through with the prednisone. I started having the chest pains again. The pain that started in the center of my back through to the front and radiating out to my shoulders, and I asked the doctor if maybe I should have my gallbladder checked out, so she sent me out for an ultrasound, where nothing unusual was found. But when I came back for a follow-up visit, along with the usual blood tests, she ordered a 24 hr. urine free cortisol test to rule out Cushing’s. I didn’t know what she was talking about and she didn’t elaborate. She just handed me the jug and gave me some instructions. A few days later she called me to tell me she was referring me to an endocrinologist. I had a month before the appointment. One month to find out what Cushing’s was all about. I started to surf the Web – something I had never done – to find any site that could offer me any info. I found enough to realize I was pretty sick and to make some sense of all the things that had been happening to my body. I wasn’t imagining all this and I wasn’t a hypochondriac. By the time I got to see the endo I had developed the purple racing stripes. First on my belly, then under arms, then breasts. She was concerned about my high blood pressure and the heavy sweating (she claimed the sweating wasn’t typical of Cushings) so she ordered a 24 hr urine (actually, 2) for pheocromocytoma, and also the 48 hr. dexamethasone test. The hospital she works with is small and she claimed couldn’t really handle a case like mine, so she wanted to start me on the urine tests and refer me out to someone in one of the larger Boston hospitals for all the imaging and major treatment. I preferred not to go with the doctor she suggested, which I think ticked her off, because she still has not called me to discuss the results of the tests I took (which were in September), and decided to make an appointment with Dr. Beverly Biller at Mass General Hospital. I don’t think I ever looked forward to a doctor’s appointment so much in my whole life.
I met with Dr. Biller and Dr. Alexander November 20th, 2000. They spent a good 1 ½ hrs. with me and were very thorough. After doing some blood work, they sent me off with a jug for 2 24 hr. urine free cortisol tests and an appointment for an overnight dexamethasone test so I could get some of the diagnostics out of the way that week (it was Thanksgiving week and I was on vacation). I had to re-take the ACTH test (because the lab may have flubbed it), and I had a CT Scan of my adrenals. The scan revealed a tumor on my right adrenal gland. I was scheduled for a laparoscopic adrenalectomy, on January 9th, 2001 .
I was in constant pain, could barely walk, felt like I was wearing a backpack, had constant edema. Eating caused pain and bloating, my eyes were always bloodshot, I didn’t get enough sleep, my ribs hurt, my teeth hurt and are all loose, I had a steady wheeze, I sometimes had difficulty speaking, I had bladder control problems, and I gained over 20 lbs. since I found out about the cushing’s.
The surgery was a success. The right adrenal and tumor were removed, along with my gallbladder, due to an injury during surgery. I noticed changes right away. First, the blood pressure went down. Within two weeks of the surgery I had lost about 25 pounds of water and bloat (which had accumulated just prior to and during the surgery). I no longer had pain and bloating after eating. My appetite has also changed to what I would call "normal". I now can eat according to my hunger and not just to mealtime. I really notice the skin changes. The bruising is gone and the "spots" are no longer a problem. The redness in my face is fading, and the redness on my arms and chest has disappeared. The dry, gray patches on my elbows are now smooth and pink. Much of my concentration has come back. At 6 weeks post-op I returned to work.
UPDATE May 28, 2003: After 1 year post-op I attempted to go off prednisone. My serum cortisol was around 9. I lasted with that nonsense for about 6 months when my levels didn’t get any higher, so I resumed taking prednisone at lower levels (2mg). Now, 28 + months post-op, I’m finally off prednisone. The aches and pains are gone, I’ve lost 64 lbs., and I’m living a fairly normal life. Recovery does come! The down side is that I will be loosing my teeth from the damage of years of excessive cortisol.
Lynne's photos. Click any thumbnail to view the larger image.