Savannah, a veterinary technician from Oklahoma in her twenties, was at peak fitness. As a college softball player, she was ready for any challenge on or off the field before symptoms of Cushing’s syndrome, also known as hypercortisolism, eluded her and her doctors.
When Savannah started getting fatigued during workouts her freshman year, she initially attributed the fatigue to a demanding schedule that had her going full speed 24/7.
She also started dealing with joint pain, insomnia, and weight gain despite maintaining her fitness routine. These symptoms also began to affect her mental health.
“My body felt exhausted, so I knew maybe something was wrong,” Savannah recalls. “Probably a year later is when I first went to a doctor.”
Tests revealed her hormone levels were “a little off,” but not enough to cause any concern, with her doctor attributing the weight gain to “college depression” or the “freshman 15”, even though she had gained nearly 75 pounds. She was told to diet and exercise, beginning her long and frustrating journey to a diagnosis.
It was pursuing a career in veterinary medicine that led Savannah to a revelation about her health. At this point, she was engaged to her fiancé, Steel, and wanted to lose weight for her wedding. Despite her intense efforts, she just couldn’t lose the weight.
Then, one day at work, a dog came in, and the veterinarian ordered testing for Cushing’s disease. Curious, she asked about the dog’s symptoms, which were weight gain, excessive thirst and hunger. She thought to herself, “I’m like the poster child for Cushing’s disease.”
Savannah returned to her doctor and asked to be tested for Cushing’s. Despite the doctor’s initial skepticism given that Cushing’s has historically been considered a rare disease, she was referred to an endocrinologist. Savannah recalls the endocrinologist evaluating her symptoms, reviewing her previous tests, telling her he thought she had Cushing’s and referring her to a specialist.
The specialist told her she likely had polycystic ovary syndrome (PCOS) and advised her to diet and exercise. This was mentally trying for Savannah and for her now husband, Steel, who says, it was incredibly hard to watch the person he loved suffer without answers.
“I wanted to make it very clear to her that I wanted what was best for her,” Steel shares. “I was going to be by her side through every step of it and do everything within my power to help her through it. My biggest goal was to try and keep things as normal as possible and focus on the little things that became the glue that held us together during those very hard times.”
With her symptoms worsening, Savannah returned to her endocrinologist. Finally, a test revealed that her cortisol levels – one sign of the disease – were “off the charts.” Savannah recalls, “Overall, it was five years and five doctors when I finally got diagnosed.”
Getting a Cushing’s diagnosis has been a game changer for Savannah. “When I finally had a path forward, I remember being so excited,” Savannah says.
Now, Savannah is feeling like herself again. “After everything I went through, I feel like I can just break down any wall standing in my way,” Savannah says. “When I look at the softball field now, I see great memories and I can’t wait to start a family of my own so I can teach my children how to play.”
Savannah channels the same determination she once brought to the softball field into raising awareness about her diagnosis. Her wish for others dealing with similar symptoms is to find a doctor who is willing to listen and consider every possibility, no matter how rare it may be. “My hope for other people who are on a similar path is that they get diagnosed way before I did and get the help they need.”
If you suspect you may have hypercortisolism or Cushing’s syndrome, talk to your doctor. For more information or to find a specialist near you, click here.
This article is the experience of one person and is not medical advice. Consult a medical professional for medical advice, diagnoses, or treatment.