I’m a 70-year-old retired female from North Carolina (just outside Asheville), and this is my Cushing’s story. Over the last 2 years, my husband noticed a change in my behavior, as well as some physical changes. We both thought these health issues were related to diabetes 2 (non-insulin) which I’ve had for 6 years. I was on medication for diabetes and my hemoglobin A1c number kept increasing, but was not yet at a level of major concern. My husband suggested that I establish a relationship with an endocrinologist (other than my primary care physician) who could monitor my diabetes.
As it turned out, I was very fortunate to have made that decision, especially after reading other people’s stories and their difficulties getting a Cushing’s diagnosis. At the end of our first meeting, the endocrinologist said he suspected that I might have Cushing’s and wanted to do some tests. This meeting didn’t include a physical exam, and I didn’t list my various Cushing’s symptoms. I also never mentioned Cushing’s but when he brought it up, I was slightly familiar with it having read an article about it the year before. At that time, I thought this sounds like me but it’s so rare, it’s probably not the case. I didn’t even bring it up during my annual physical examination. I attributed my ailments to aging and genetics (my mother was asthmatic and had been on cortisone for several years, hence she had some of the same symptoms as Cushing’s).
My symptoms included: hair loss, diabetes, moon face, fatty deposit on sides of neck to the collar bone, buffalo hump, enlarged abdomen, muscle loss (especially the thighs), two unexplained foot fractures, osteoporosis, emotional outbursts, depression, bruising, thin skin, sleep disruption, frequent urination during the night, inability to lose weight, and weight gain in spite of regular exercise and a healthy diet. Last April I stopped going to the gym although I had been exercising regularly for over 20 years and never had been overweight. My exercise schedule up to that point was 4-5 days a week, at least 90 minutes each day (including an hour of swimming laps 2 days a week). I was getting weaker and having difficulty walking up stairs, and my abdomen was getting so big that I no longer could fit into my swimsuit even if I went to a larger size. I couldn’t understand why this was happening and convinced myself that I was getting old and just had to deal with it so why should I bother exercising. I now know this was depression created by the disease.
A series of tests began in August, 2016 and Cushing’s was confirmed in September. Finding and joining CSRF shortly thereafter has been extremely helpful. The MRI brain scan showed a small tumor (3 mm) on my pituitary. Successful transsphenoidal surgery (through the lip) to remove the tumor took place on January 5, 2017 out-of-state at the University of Virginia by a highly experienced neurosurgeon. I was in the hospital for 3 days. The first 48 hours after surgery were the toughest. I was experiencing cortisol withdrawal, which caused major headaches, nausea, and acid reflux. The sinus pain was substantial as well. Once I was home, I only had one setback about a week after surgery. My local endocrinologist had reduced my hydrocortisone because he thought the dosage originally prescribed might be too high. I woke in the middle of the night, and it felt as if I’d just come out of surgery – same symptoms plus out-of-control emotions. I called the neurosurgeon’s office at UVA, who said I should go back to the original dosage, and I’ve been fine ever since. I’ve also learned since that episode that’s the reason some patients have a lot of difficulty with recovery; the hydrocortisone dosage is not adequate.
My recovery to date has been tolerable. I’m just tired (usually have a one-hour nap per day), am weak, and occasionally have a mild headache which only requires a Tylenol, unsteady on my feet but just slightly, and depressed but knowing it’s chemical makes it easier to control. Each day I feel a bit stronger, and I started driving this week.
I’ve been fortunate to have the wonderful support of my spouse and friends. It certainly helped with my pre-surgery fears and recovery. It appears no permanent damage has been done and perhaps my recovery time will not be as long as it is for many. The doctors think I’ve probably had it for 6 years, roughly the same time I was diagnosed with diabetes. I’m also hoping my Cushing’s symptoms will be reversed in time, although I’ve read it’s different for each person. I will keep you up to date with my recovery, which some have said can be worse than the disease. I also hope that my story is helpful to someone, as others’ stories have been for me. Any thoughts or information you can share that might help me prepare for the unexpected regarding recovery are appreciated. Thanks to those who have shared their experiences through CSRF; you have been a lifesaver.
State: North Carolina
Newsletter: Spring, 2017