With Cushing’s

It was spring of 2011 when I started to notice a change in myself. Clothes were fitting tighter and my appetite was out of control. I’ve always been a thin gal, weighing 125lbs. I was 39, so I thought, “guess this is part of growing old”. It wasn’t until the following year (2012) that everything seemed to hit me. I felt like I woke up one morning 50 pounds heavier, looked in the mirror and didn’t recognize myself. My face and neck were extremely puffy. Over the course of the next year all the other symptoms followed; stretch marks, insomnia, stress fractures, the hump and more. Again, I dismissed them, even though my mom would constantly tell me “you look swollen and sick”. I shrugged my shoulders and ignored it.

In August of 2013 I went for a yearly physical, which is required by our health insurance. My white blood cell count (WBC) was elevated, my vitamin D was almost non-existent, and I had high BP and glucose. I was told to have everything repeated in a month. The next month my lab results were even worse. I feared cancer!

It was the holiday season and I didn’t want bad news around the holidays, so I refused to make an appointment until after the first of the year. On Christmas Day, 2013 I ended up in the hospital with a severely infected abscess (septic cellulitis) which required emergency surgery and a 5 day hospital stay for IV antibiotics. The doctor told me “you are lucky to be alive. You were a very sick lady when you got here”.  “THAT IS IT” I said and made an appointment with a new doctor.

Since I’d always been healthy, I never went to the doctor, so I didn’t know what to expect now that something was wrong with me. Five minutes into my visit he said “you look like you have Cushing’s syndrome”. I had no idea what he was talking about; I’d never heard of Cushing’s. I left with some lab orders and 3 days later, the doctor called confirming a Cushing’s diagnosis. As scared as I was, I was relieved that I finally had an explanation for all these weird symptoms I’d been having!

After seeing an endocrinologist, I was told that my ATCH was suggestive of a pituitary tumor and an MRI was ordered. The following day my endocrinologist called and told me “there was a small, 2mm tumor found on my pituitary gland” and scheduled me for an IPSS procedure. I think I cried non-stop for 2 weeks. By this time I was sleeping 2-3 hours a night, working full time and being a wife and mother of 2. I feared that life as I knew it was over.

June 2013, 3 mo post-op

While awaiting my IPSS appointment, my endocrinologist wanted to repeat my ATCH test. Two days later she called and said, “Something is not right. These numbers must be wrong. This is not possible”. She asked me if the lab technician drew my blood in a chilled tube. I said “No”, and everything was immediately put on hold until I had an ACTH test done at a more reliable facility. This time my ATCH was non-detectable. She called and told me she wanted a CT scan of my adrenal glands absolutely as soon as possible. I had the scan done and afterwards, the technician told me the radiologist reviewed my images and was calling my doctor. “NO NO NO!!!” This cannot be happening. I knew he wasn’t calling her with good news. The next day she called. The CT showed a tumor on my right gland. I was beside myself. I never understood depression until I went through this. It turned out that the pituitary tumor is non-secreting but the adrenal tumor was causing my Cushing’s. Surgery was scheduled for March 26, 2014, and that day couldn’t come soon enough. That was the day that George, what I named my tumor, was gone forever!

I’m now 8 months post-op and I feel GREAT! I’ve lost 43 of the 50 pounds I gained and I look like myself again.  The excess cortisol caused my left adrenal gland to atrophy, so I was adrenal insufficient for a while, but my remaining adrenal is now functioning! Some days are hard, but those days are getting to be fewer and farther between. Cushing’s syndrome has changed my life and in a way, for the better. I realize how tough I am and how hard I’m willing to fight for my life. If I can do it, so can you!

Member: 142247

Newsletter: Winter, 2014

State: Indiana