My story began in February 2015, or so I thought. I woke up one morning with my legs swollen again and it felt like my heart was racing. I made a doctor’s appointment that day. My blood pressure was out of control. My primary care doctor requested some blood work, and when my test results came back, I was able to review them online. There were a few test results that were either a little too high, or a little too low, but nothing significant. I did some research on my own and asked my doctor to request a test to check my cortisol level because I thought I had Cushing’s disease.
My story began in February 2015, or so I thought. I woke up one morning with my legs swollen again and it felt like my heart was racing. I made a doctor’s appointment that day. My blood pressure was out of control. My primary care doctor requested some blood work, and when my test results came back, I was able to review them online. There were a few test results that were either a little too high, or a little too low, but nothing significant. I did some research on my own and asked my doctor to request a test to check my cortisol level because I thought I had Cushing’s disease. He kind of laughed at me and said that he has never seen a case of Cushing’s in his 29 years of being a doctor, and that it was extremely rare, but he would request the test. The test results came back and my cortisol level was more than double the normal limit. My doctor said that my cortisol level was a little high but not to worry about it. I sent an email asking him, how can it be double the limit but “not to worry”? The next day I had an appointment with endocrinology. I was very fortunate that I could review my blood test results online. If not, I might still be very sick or worse.
At my first endocrinology appointment, the endocrinologist took one look at me and said that I was a textbook case for Cushing’s. Like any other “Cushie”, the testing began to confirm I had Cushing’s. Once it was confirmed, I was referred to Massachusetts General in Boston. This was the best thing my local endocrinologist could have done for me. The Endo team at Massachusetts General in Boston was awesome. I could not have asked for better care. After several trips from my home in Central PA to Boston to confirm my Cushing’s again, additional tests were run to identify the cause of the higher cortisol levels. I was diagnosed with Cushing’s with a pituitary tumor.
I had surgery in September 2015 to remove the pituitary tumor. During this entire time frame, I was trying to complete my final year at Penn State University. Fortunately, I was able to graduate in December 2015.
After surgery in Boston, my local aftercare was less than desirable. My endocrinologist prescribed 20 mg of hydrocortisone (later, I learned that this was a maintenance dose, not for someone in recovery). Over the next eight months, she cancelled or pushed backed my follow-up appointment three times.
I was having cortisol withdrawals, but never knew that until I found the support group organized by The Conley Cushing’s Disease Fund and went to a meeting. I found out through my support group that the initial dose should have been about three times the 20 mg initially prescribed. I wish I would have found the support group earlier. I thought what I had been experiencing was “normal” symptoms of recovery.
That was the longest eight months of my life. Most days the only reason I got out of bed was to take care of my dogs. They probably saved my life during that time.
Eventually I was prescribed the right dosage and diagnosed with a thyroid issue that I didn’t know I had. Cushing’s either hid my thyroid issue or caused it. I managed my daily life the best that I could. After two years, I finally weaned off of hydrocortisone by myself since I had no endocrinologist at the time. I got my cortisol level checked every three months until it was back to within the normal range. My new local endocrinologist said that my cortisol test results were in the low end of the normal range, that I could stop taking hydrocortisone, and that I didn’t need any follow up. I went a year of feeling OK, but not quite right.
I finally found another local endocrinologist (third one) that was experienced with Cushing’s patients. She ordered several blood tests and an MRI. These results came back normal but indicated that I needed to take calcium and vitamin D. I told my endocrinologist that I still felt exhausted most of the time. She ordered a Cortrosyn Stimulation Test to be done and the results came back that my adrenal glands were working but not quite right. If I just sat at home doing nothing, I would be okay. If I wanted to live somewhat of a normal life, I had to start taking steroids again. My body cannot produce enough cortisol during stressful situations. Of course, with taking steroids again, it didn’t take long for some of the weight to come back. This is my current state of health.
During my recovery, one of the hardest struggles was talking to family and friends about my Cushing’s. They asked how I was feeling but as soon as I started to talk about more of the details, they would change the subject. It seemed they cared, but they really didn’t want to know or couldn’t handle the details.
Eventually I just put on my happy face and try to act as “normal” as I could and stopped talking about my condition. I started telling everyone I was feeling OK. Even now, my parents don’t want to talk about how sick I really was.
Looking back, I probably had my pituitary tumor over 15 years if not more. I had high blood pressure for over 12 years (gone after tumor was removed), a hump on my back that was removed but came back, lacked energy all the time, gained over 40 pounds, had lasting brain fog, and osteoporosis, just to name some of the issues. While I was in the Air Force I had numerous tests done, but never for Cushing’s Disease. I was tested for sleep apnea, but when the results came back, the doctor told me that nothing was wrong with me, and that I should just get more sleep. I tried taking at least five different medications for high blood pressure. All that the doctors could tell me was that my high blood pressure was hereditary and the purple stretch marks on my stomach were normal. Over the next decade, I slowly got worse until February 2015 when I finally had enough.
It’s hard not reflecting back to what my quality of life could have been if my condition would have been diagnosed earlier. Without having a positive attitude most of the time, my wife Krystal’s support, and Jasper and Lexi (my two dogs) to keep me going, I might not have made it to where I am now. I can’t thank Krystal enough for being by my side through all of my issues; she is the love of my life. One thing that I have gained through my experience is to truly understand what it means to not judge anyone. I always tried to be that type of person, but I truly understand it now. Just by looking or talking to someone, you have no idea what they are experiencing in their life and on the inside. Be kind to everyone.