My story starts a little differently than most I’ve read. In 2000, we moved to California. I’d always been a walker, but in CA, my route was a three mile loop I liked to do and the first mile went straight up a very steep hill. This became my choice for a daily walking spot. Shortly after starting the hill walking, I had horrific pain in my leg and could hardly put any weight on it. I thought it was a groin muscle pull, but it turned out to be a fracture at the top of my femur bone in my hip. I thought it was from walking the hill since I did not fall. I was only 44 yrs. old, so what followed was 3 years of all types of Calcium testing with an endocrinologist. Then the weight started, which I naturally attributed to not walking as much while I was healing. I started walking again, but the weight remained. My primary care physician told me that if I didn’t lose some of the weight, I’d be a disaster in 10 years and that I needed to walk 6 days a week, not five, he said with walking five days a week I was just maintaining my weight. So, I joined Weight Watchers and continued walking every morning at 5:30 AM before I went to work and did loose 35lbs.
Then, I had weird tingling and numbness in my arms and legs. My sister has MS and when I talked with her I felt like we had similar symptoms. That led to a visit to a neurologist who ruled out MS. I explained to the neurologist that I was a Weight Watcher member and walking daily and still putting on weight. The neurologist actually told me that he was glad to see that I was gaining weight, otherwise, the cause of this would most likely be cancer! An MRI revealed about 3 compression fractures in my back. These were never painful, but quite odd for a pre-menopausal woman?? About this time, because my insurance changed, I went to a new primary care physician and a new endo. They noticed that my blood pressure was high, so I was started on blood pressure medication. I’d never had high blood pressure, even during 3 pregnancies. Still no one figured it out.
Then in 2005 my husband brought home a puppy! We’d always had dogs, so I was more than happy to bring this little guy into our home. But with the sharp puppy teeth and puppy nails, every time I got close to him, he’d get my skin. This had never bothered me before, but this time, each and every little nick turned into a large ugly blood blister or a skin tear. So, I went to the doctor again, only to be told that I was probably allergic to my dog. They gave me a Tetnus shot and said not to let my puppy bite me. But why now, when I’ve never been allergic before? That led to more tests for lupus and celiac disease, but those were negative. I started to think that my skin problems were from spending so much time in the sun when I was younger.
In 2006, I was in our pool and when I went to get out, I couldn’t put weight on my leg enough to climb the small steps to get out of the pool. I literally crawled inside the house to find my crutches from my last fracture becausethe pain was so intense. An x-ray didn’t show anything but an MRI three weeks after the fact, showed a significant fracture at the top of my other femur in my hip. I was walking and again, I told my physician that walking up the hill was probably the cause. He told me, “Cindy, you don’t break bones by walking up a hill”. So I was placed on Fosamax for my bones and since they’d found that my cholesterol was high, I also started Lipitor.
Even though I was still in Weight Watchers and carefully following the program, the weight continued to come back on after losing it, particularly in my abdomen. My daughter actually said “Mom, your arms and legs are so skinny”. Thanks a lot! Then my hair started to fall out and when thyroid tests were normal, I started reading the side effects of the medications I was on. That had to be it! So, while I probably shouldn’t have, I stopped all of the pills. I was still gaining weight, was depressed, and on top of all my other problems, I developed an embarrassing “fur” on face. I was still walking and developed one foot fracture and then another one. When I developed bumps on my neck, almost like swollen glands, I went back to the endo and actually saw the Physician Assistant. I told her “look at me, you can’t tell me this is normal, I’ve had three fractures in the past year and a half, all without falling down, and I look like a puffer fish, this can’t be normal.” She started to get a little curious and said she wanted to do 24 hr urinary cortisol test. I’d done the 24 hr urine tests before for calcium, but not for cortisol. Well, that test came back with an extremely elevated urinary cortisol. That led to MRI’s of both my pituitary and adrenal glands. The doctor actually told me that it was not a good thing to have Cushing’s, gave me some CSRF literature and told me to call these people. I started calling and texting everyone in the CSRF that I could and that was really helpful and at the same time a little frightening. One time a pituitary patient called and left a message on our recorder about his experience with pituitary surgery. My kid’s and my husband listened to the message before I did and when I got home they were pretty freaked out that I might have a “brain” tumor. Instead, my results came back that I had a 4mm tumor on one adrenal gland.
I was finally scheduled for surgery! The surgeon told me that after the surgery I’d “instantly feel better” and in my mind, instantly, meant instantly. This nightmare wouldn’t go on any longer! I had my pre-op meeting with the anesthesiologist and they found that my blood pressure was now 250/120. He told me we couldn’t proceed with surgery until my bottom number was under 100. It took a whole month of trying different medications and weekly visits to my primary care doctor to get my blood pressure down. Then there was the scheduling issue. My surgeon refused to schedule it without having another surgeon there. I remember being at an appointment when he said, “Where’s your husband? This is a serious surgery.” I hadn’t really thought much of it, considering I’d had 3 children, so it couldn’t be much worse than that, right? He explained that he would try to do it laparoscopically, but he’d be very close to the vena cava that carries a lot of blood. If he happened to nick that, he wanted someone else there to help him convert to an open surgery. Boy, this was more serious than I thought.
Well, surgery was finally scheduled in March of 2008 and it went just perfectly, only 4 small incisions and no large open procedure! I was in ICU for about two days and was home in three days. My sister came to help out and I really did great the first week. Right after she left, I started feeling miserable with vomiting and a horrendous headache for a couple days. It turns out that this was the start of an adrenal crisis and increasing my replacement dose helped quickly. About this time, I began to realize that I wasn’t feeling better “instantly” as promised. That led to more phone calls and texts to others who had been through this and I was somewhat assured that feeling lousy was pretty normal. But, that certainly wasn’t what I expected. I connected with Chris, who’d had an adrenal removed about a month before I did, and I honestly don’t know what I would have done without his support. We’d email often and compare notes on what each of our doctors were saying about tapering down the replacement medicine and how we were feeling, which was tired, not hungry, and the aches and pains.
I went back to work 3 weeks after my surgery, which in retrospect, was probably too soon. I lost all the weight without any trouble; I just wasn’t hungry. It took a full year and a half to stop the replacement meds. It took a long time for my pulse to go back to normal. It was always around 100 for about six months after surgery. I really didn’t feel myself and was so very fatigued until I was able to stop the meds. After that, it was like I had a new body, my skin cleared up, my hair grew back, my “fur” went away, my blood pressure is back to normal and best of all the fatigue improved dramatically and I am not on any medication at all!
I’m now 4 years past my ordeal with Cushing’s and I’m doing really well. I have not had a fracture since my surgery. My osteoporosis is now osteopenia and what used to be osteopenia is now normal! I’d always been a walker, but started running and found that I really enjoyed it. So far, I’ve been in a number of half marathons and am currently training for my first full marathon this June in Utah. I’m biking and hiking and I really feel fabulous.
I am so thankful for the CSRF. It helped me through the recovery process, and it is a process. Chris helped me so much by just being there and understanding. My husband was wonderful through this, but I don’t think anyone that hasn’t been through Cushing’s can truly understand the toll it takes on you and some of the scary things you think when you think you are all alone in this. A few good things did come out of this. My kids all made presentations to their school classes on Cushing’s, so I’d like to think that at least a few more people know about Cushing’s. My niece is studying to be an MD, so my experience has made her much more aware of looking at the whole picture.
I still boggles my mind that the cortisol test is relatively inexpensive compared to every other test under the sun I had. All someone had to do was to order it many years before they did!
Please let me know if I can be of help to anyone!
Newsletter: Spring, 2012