Dismissed as Post-Pregnancy Changes, a Woman’s “Moon Face” Led to a Rare Diagnosis
Katelyn’s journey to a diagnosis of Cushing’s disease was marked by frustrating dismissals of her increasingly alarming symptoms. Initially, her concerns – including a noticeable puffiness and redness in her face – were attributed to normal post-pregnancy changes. However, she persisted, ultimately uncovering a hidden pituitary tumour.
Cushing’s disease is a rare disorder, affecting only one to two people per million each year, meaning many doctors may encounter only one or two cases throughout their careers. This rarity contributes to diagnostic challenges, as symptoms frequently enough overlap with more common conditions like polycystic ovary syndrome, menopause, or typical post-pregnancy fluctuations.
“Cushing’s can be arduous to diagnose because many of teh features-weight gain, mood changes, acne-are so common,” explains Professor Ashley grossman, an endocrinologist at the University of Oxford. “but when they occur together, and in a relatively short space of time, it should raise a red flag.”
For Katelyn, the delay in diagnosis was deeply distressing.”The hardest part was watching how everything kept getting worse and just hoping it would be reversible one day,” she recounts.
Eventually, a brain scan revealed a 1.5cm tumour on her pituitary gland. Surgeons successfully removed the tumour through a delicate operation performed via her nasal cavity. While most patients respond well to surgery, some require medication to suppress cortisol production, and in severe cases, adrenal gland removal may be necessary.Recovery is frequently enough a lengthy process, perhaps taking months or even years for cortisol levels to normalize and the body to heal.
Now in recovery, Katelyn is using TikTok to share her experience, connecting with thousands who recognize similar symptoms. She emphasizes her role in advocating for her own health. “I was the one who connected the dots and pushed for the right tests,” she stated. “A 1.5cm pituitary tumour absolutely wrecked me. Nothing will humble you more than living as a version of yourself you don’t recognise. But this too shall pass-it gets better.”
Katelyn’s videos have prompted hundreds of messages from individuals concerned about potential Cushing’s symptoms, highlighting a gap in awareness. “It makes me sad that people have to dig through external sources and fight so hard for answers when somthing as simple as a blood test could change everything,” she saeid.
Experts emphasize the importance of considering Cushing’s disease in patients presenting with a cluster of characteristic symptoms. Professor Grossman advises, “If you have rapid, unexplained weight gain, thinning skin and bruising, irregular periods and psychological changes, it is indeed vital to ask yoru GP for comprehensive hormone testing. A simple blood or urine test can give the first clue, and early diagnosis makes treatment much more effective.”
Key symptoms to watch for include rapid weight gain concentrated around the trunk and face, thinning skin, purple stretch marks, easy bruising, excessive hair growth on the face and body, muscle weakness, fatigue, depression, anxiety, high blood pressure, and diabetes.Untreated, Cushing’s disease can be life-threatening.
Driven by her experience, Katelyn is dedicated to raising awareness. “I trusted myself, and that’s what saved me,” she says. “For months I was told it was all in my head. but I knew my body, and I kept pushing. If my story helps just one person get diagnosed earlier,it will have been worth it.”
