And It's About Time There Was Some Support For Cushing's!
After lurking on this site for a few weeks, I’m ready to introduce myself as a possible Cushing’s patient. I feel sick, crazy, and desperate, and it’s just getting worse. I pray every day, almost every hour, that I can find out what’s wrong with me.
I began having irregular periods in 2000 at age 25. In 2001, I had a miscarriage, and from that point my body has never been the same. Prior to the pregnancy, I weighed 120 lbs. I gained around 10 pounds during the pregnancy, and after the miscarriage continued to gain. A year later, I was 150 lbs., even while dieting, training, and running a half marathon and several 5Ks. A few doctors mentioned hypothyroidism, but no one felt it necessary to test me.
In 2003, I suffered a back injury, and met up with a doctor who actually payed attention to how I felt! He suggested hypothyroidism, which test results confirmed. By that time, I was 165 lbs., but with medication and a strict low carb diet I was able to get down to 140 lbs. (even down to 130 with Phentermine). My periods returned to normal, my blood pressure lowered, and I was able to maintain this for about two years, feeling pretty good, basically normal. In 2004, I began having irregular periods again, which were more painful than normal. A pelvic ultrasound revealed PCOS, but starting on birth control seemed to help.
In November 2005, I began gaining weight. My husband was deployed in the military and I was working with the military families of his unit, so it was a very stressful time, and I attributed some of my worsening symptoms. By December of 2007 I had reached 215 lbs., after many diets and a great deal of exercise. Over the course of this weight gain, my PCP had run a few sets of blood tests, and the last ones performed in November 2007 finally prompted him to refer me to an endocrinologist. I am insulin resistant, have high cholesterol, have had consistently elevated AM cortisol levels, elevated DHEA, slightly elevated hematocrit and hemoglobin, and was slightly elevated on a 24 hr. UFC. I also had an MRI of both my pituitary and adrenals; no adenomas were identified, but the pituitary scan was suggestive of empty sella syndrome and a smaller than normal pituitary gland. Along with the weight gain, I have developed truncal obesity (my abdominal measurements get bigger even without weight gain!), a buffalo hump, subclavicular fat pads, a slight moonface, high blood pressure, extreme fatigue, and just a general sick feeling. My endo is still somewhat skeptical of Cushing’s, but he has referred me to Dr. Kennedy at Shands; my first appointment is next month.
I know something is wrong with me, and sometimes I feel so bad that I’m afraid I could be dying! I work 20 hours a week and go to grad school part time; not a terribly taxing schedule, but I am exhausted, and it’s increasingly difficult to function. I am not the same person I was just a few years ago, and NOT the same person my husband married. He has been understanding so far, but I sometimes feel that he is skeptical of my weight and symptoms—or is it me that is skeptical? I’ve felt so lost, but am now gaining the determination to push for answers, no matter what the diagnosis.
I’m glad this site is here; it’s provided me with a lot of information and answers not found elsewhere.
