And It's About Time There Was Some Support For Cushing's!
I am a 46-year-old female, married with two children, one grandson, and a Cavalier King Charles Spaniel named Gizmo who rules the household.
I started experiencing symptoms in 1997. I was always a very thin person, and at times even bordered on anorexia (size 2-4). It was during one of these periods when I was not eating much and exercising excessively (for me, anyway) that I first got sick. One night I told my husband that I couldn't sleep because the pounding of my heart was shaking the bed so badly it was keeping me awake. He said "THAT is not normal" and so off I went to the cardiologist. After hearing my other symptoms -- tachycardia, panic attacks, shortness of breath -- he did an echocardiagram. That showed mitral valve prolapse; but as he put it "a beeeautiful heart"! I was put on a beta blocker to slow my heart rate (120 resting; 150 during episodes), Effexor (to combat the anxiety, depression, and panic attacks), and Xanax (as needed during panic). I was just one of those unfortunate few to have symptomatic MVP. I could live with that -- it wasn't something that would kill me. I noticed a creeping weight gain then, but chalked it up to the beta blockers.
Within the year, I started having extreme back pain and what I thought was intestinal problems. I went to doctor after doctor, who suggested everything from IBS to UTI to ovarian cancer! Finally, I was diagnosed with kidney stones. Two were found on ultrasound, and they suggested I have the "sonar blast" to break them up. Since I was living in Japan at the time and wasn't so keen on being in a Japanese hospital, I declined and was going to wait until back in the U.S. six weeks later. I passed the stones two days before going home. Unfortunately, some pain lingered. I blew it off thinking that 3 months of stones in my ureter probably irritated my whole system and it would just take time to heal. Several months later I when the pain got worse I was diagnosed with an inguinal hernia. Surgery to repair that was successful and recovery quick. However, I gained a significant amount of weight during this time. That was discounted as being due to my lack of exercise while in pain and recovery.
When we moved back to the U.S. permanently I joined a gym to get rid of the 15-20 pounds I had gained. I was very motivated (remember the anorexic tendencies) and went several times a week. I never lost a pound. I finally gave up after several months; but at least the weight had stabilized. I was diagnosed with high cholesterol and put on medication, which didn't work and the meds were increased.
The weight started climbing again for no apparent reason. I went to my PCP and asked him for diet pills. Fortunately, he wouldn't even consider it (heart issues, past anorexia) and sent my to a psychologist to deal with my body image. (I thank him every day for this, as this process led me to another psychologist who literally saved my life in dealing with a bipolar teenager, a personality-disordered spouse, and my own boundary issues.)
In 2004, I went to my gyn and explained that I had not had a "real" period in six months. I thought I was premenopausal. He did all the hormone tests and assured me that was not the case. He asked if I had noticed any weight gain - uh, yeah, I was heavier than I had ever been - so he tested me for insulin resistance. Sure enough. I had that, too. He started me on metformin. In the first three months, I lost about 10 pounds, but the insulin numbers stayed high. We upped the metformin, and I lost another couple of pounds. It didn't stay off, though. I weighed more than I had when I was pregnant, and actually FELT pregnant, because none of my waistbands fit, and my shirt buttons strained. My face and neck carried a huge amount of the weight; and I felt like someone could pop me with a pin. The doctors' answer -- you are just getting older, everyone gains weight as they age, time to start Atkins, South Beach, something diet. My husband was more and more critical of my looks, and declared that we would have a "platonic" marriage. It was the worst period of my life. I sunk to new lows of depression and began to isolate myself. Fortunately, this was the time I started seeing a new psychologist and he whipped me into shape mentally!
Finally, this year, although I was happier with myself, I knew that something was terribly wrong with my body. By chance, I had the TV on when Medical Mysteries came on, and the story was about Sharm! I sat with my mouth open saying -- THAT'S ME! I made an appointment with my PCP for the next week, and went armed with my list of symptoms and pictures of me over the last six years. He was taken aback by the photos, but still wasn't sure. "Cushings is very, very rare." He offered diet suggestions. That's when I said "Look, I don't think I'm just fat. I don't think everyone who gains weight feels like they are living in an alien body, and that they coud pop out of their skin any minute. I don't think they feel like they are choking to death. I will watch my diet (even more than I already do) but can we at least rule it out?" He ordered an 8am cortisol level, just to prove me wrong, I think. Surprise! That was high. So then he ordered hormone levels. They were all at undetectable levels. He ordered a pregnancy test - because I just couldn't have those levels if I were not pregnant. Nope. Then he threw up his hands, said I was "out of his paygrade", and referred me to an endo.
I thought long and hard about seeing this endo here in Colorado (I had lots of time since I couldn't get an appointment for over a month) and finally decided, after reading on this website, that I needed a specialist. I just couldn't stand the thought of wasting another year or more with an endo who might or might not understand Cushings. I chose to go see Dr. Friedman in LA, and I am so glad I did. He immediately ordered MRIs and CAT scans based on my earlier lab results, and added a bunch of his own.
At this point, my MRI (which was originally read as normal by the radiologist) shows some inconsistensies in shading, suggesting the possibility of a small tumor (as read by neurosurgeon Ian McCutcheon at MD Anderson). I am in the process of testing, which is long and frustrating. So far, I have no high UFCs and no high salivaries, but high serum levels (day and night). I know Dr. Friedman will hang in there with me until we find the real source of all my problems.