My Cushing’s story seems to be a little different than most others that I’ve read about. Not in the sense of the disease itself, but the process of diagnosis. Being that I’m not quite sure when exactly I acquired it, I might as well just give some background of my life as to what probably contributed to its existence. I have been no stranger of chronic exposure to stress. I married a Marine when I was 19 years old and endured the heart wrenching lonesome months of his 2 Iraqi War deployments during our first 4 years of marriage. While he was gone, I stayed focused on being both a full-time college student as well as full-time Certified Nursing Assistant. After he returned home the second time, we decided that it was time for him to separate from the Marine Corps and I could chase my dream of becoming a Dentist. The next 6 years were chalked full of classes, tests, applications, interviews and board exams! Not to mention the normal life stresses of finances, chores and other family issues. Also, during this time I had a close cousin murdered.
I managed to always stay pretty thin by being relatively obsessed with diet and exercise. I have always loved to run and would jog for miles and miles at a time especially to take breaks away from studying!
Looking back, it was about my 2nd year (age 26) of Dental School when I believe my little tumor friend started coming out of its closet within my pituitary. This is when I really started having problems sleeping, hair thinning, feeling more tired, more irritable, menstrual irregularities, etc. Of course, I just figured it was the stress of graduate school! I just tried to work out more, but that didn’t stop the roundness of my face. It was my mom that pointed out that my face was looking puffy. She was brutally honest because she was worried that I was becoming hypothyroid like her! Little did she know that I had already had my thyroid hormone levels checked and knew that I was normal there!
Almost immediately after graduating Dental School, I was off to Commissioned Officer Training for the Air Force for almost 5 weeks to start the beginning of my 4-year commitment! I had received their scholarship, accepted their Advanced Education in General Dentistry residency program and was ready to be a Captain in the Air Force when my symptoms seem to have exploded! At first, I thought my anxiety, nervousness and depression was all because of the massive life changes, but I could sense it was more than that!
Right before Thanksgiving 2011, I finally made an appointment to see my Primary Care Manager, P.A. Sarah Berger. Upon our first meeting I found myself apologizing for the unexplainable/uncontrollable tears that interrupted our consultation! I tried to explain my new lack of motivation to exercise, eat right, feel happy and accomplished, etc. I was extremely impressed with her compassion and willingness to start to help me! My vital signs showed that I was also having hypertension that needed to be addressed. I was started on medications for blood pressure, depression, anxiety and sleep while we started the broad spectrum of blood tests.
I waited out the next month hoping the medications would kick in and solve my issues, but during my Christmas break from the stressful residency program things got worse. By the time my husband and I returned home from visiting our family for the holidays, I had convinced myself that I needed to try to resign from the residency and try to finish my commitment as a General Dentist. My commander was shocked with my request and asked for me to take the weekend to reconsider. When I met back with him the following Monday, he had a wonderful, less stressful curriculum proposition for me, which I accepted. Oddly enough, within this meeting of what was supposed to be a positive situation, I had my first anxiety attack! Yes, embarrassing, but I had no idea what was happening at the time! Unexplainable high blood pressure, heart pounding and extreme fear just flooded my body! My commander saw first-hand the physical evidence that there indeed was something wrong! From that point on, he allowed me to make any doctor’s appointment that I needed in order to figure out just what was happening to me. He even talked with other medical professionals within our hospital to get their opinions on a possible diagnosis.
Rewind a couple of years to dental school, I had briefly learned about Cushing’s Disease and remember talking amongst friends that it was one disease that would “suck” to have because of the physical characteristics! So while standing in front of the mirror January 2012, I put denial aside and thought to myself “I think I have Cushing’s.” My next appointment was a Cardiologist consult. While ruling out any heart pathologies, I asked him if my round red face could be from my high blood pressure. Before he gave me an answer, I interrupted him by pointing out my “buffalo hump” to which he asked if I’d ever heard of Cushing’s disease. I smiled and said “That’s exactly what I was thinking!”
By the time I had my next follow-up appointment with my PCM, the Cardiologist had already spoken with her and she had gotten in touch with my future Endocrinologist, Dr. Nick Vernetti! So, walking into P.A. Berger’s office with my list of highlighted symptoms off the Mayo Clinic website for Cushing’s, she’d already put in a lab order for me to do a 24hr Urine cortisol analysis and get a CT/angiogram done. We were on the same page! Needless to say, I’ve been very blessed in my diagnosis process!
Within the first minute of meeting Dr. Vernetti, he stated that he saw my lab results as well as now seeing me personally and thinks I have Cushing’s disease. He was adamant about finding a highly experienced Endocrinologist and Neurosurgeon that specialized in pituitary disease and surgery for my future procedure. Shortly thereafter, I came in contact with Dr. Katznelson, Dr. Dodd and Dr. Nayak at Stanford Medical Center! I cannot be more thankful for each one of them and their roles in getting me to today!
It feels like it was within a blink of an eye that I got an outrageously positive 24hr urine cortisol analysis, positive low bone density test, negative MRI pituitary scan, positive IPSS towards a left-sided pituitary tumor, and scheduled for March 21, 2012 transphenoidal pituitary tumor removal surgery! I was informed that during my surgery they did multiple biopsies because they didn’t find a definitive tumor. The right side ended up looking “more suspicious” than the left (opposite of the IPSS results). It wasn’t until post-op Day 3 that we were certain that surgery was successful because we waited out multiple blood draw results and horrible symptoms due to low cortisol levels to really see that indeed my levels plummeted! I almost bottomed out but with tears of joy because “they got it!” I was started on steroids by Day 3 and discharged from the hospital on Day 4.
I admit that recovery is a rollercoaster ride, but I’m determined to make it as speedy as I possibly can! It’s been almost 2 ½ months since surgery and I’m still learning to not push myself so much! I’ve lost about 10 lbs and am gaining my energy and strength back day by day. Tapering down the hydrocortisone doses is coming along also! Again, I say that my story is different than most because I found my diagnosis somewhat early and don’t have as much ramifications as many others did! I’ve found myself to be extremely fortunate and blessed by the people in my life that helped me through this process! It’s definitely not over but there is a light in the distance as I get to celebrate my 30th Birthday next weekend!
Thank you for letting me share my story!
Newsletter: Summer, 2012