WHEN Katelyn Bonacasa’s face got “red and burning hot” and became a “complete circle”, it was dismissed by doctors as “adult acne” and “postpartum changes”.
After being repeatedly fobbed off for months on end, she decided to do her own research – and was able to get to the bottom of what was really going on.
Katelyn Bonacasa before she was struck by strange symptoms[/caption]
At 29, her face swelled like a ‘moon’ and felt ‘burning hot’[/caption]
The first symptoms Katelyn, then 29, noticed was red, bumpy irritation across her chest.
A dermatologist said it had been hormonally triggered and gave her a wash and cream, which cleared it up.
But soon after that her face started to change.
She said: “Moon face was the first major symptom I noticed.
“My face lost all shape and became a complete circle. On top of that, it was red and burning hot all the time.”
Within weeks her hair began falling out and she lost nearly a third of it, while new hair sprouted across her face, from forehead to chin.
Acne erupted across her skin, her body bruised easily, and even the smallest cuts would take months to heal.
“I was literally unrecognisable to myself,” Katelyn admitted.
“I gained 30lbs so quickly, I couldn’t keep my eyes open from fatigue, but I also couldn’t sleep.
“I was depressed, anxious, angry, and constantly on edge. I felt like I was losing my mind.”
Her periods stopped, her thyroid became enlarged, and blood work showed her body wasn’t responding as it should to insulin.
Katelyn recalled: “The hardest part was watching how everything kept getting worse and just hoping it would be reversible one day.”
Yet for eight long months, doctors dismissed her insisting symptoms were “postpartum changes” or “normal for women.”
“I couldn’t even get a sentence out before my first endocrinologist interrupted me to say, ‘You’re fine,’” Katelyn claimed.
Katelyn said she no longer recognised herself in the mirror[/caption]
Katelyn before her symptoms[/caption]
She also gained weight, suffered hair loss and sleeplessness[/caption]
She described feeling ‘depressed, anxious, angry, and constantly on edge’[/caption]
“He told me it was probably just postpartum. He ordered the most basic thyroid test, nothing comprehensive, and wrote in his notes that he had ‘no suspicion of anything’.”
Another doctor brushed her skin changes off as adult acne. An OB/GYN told her to try running on a treadmill.
“These things are normal as a woman,” one endocrinologist said flatly.
So Katelyn, from Long Island, New York, began doing her own research.
“I realised the only thing I hadn’t been tested for was Cushing’s disease,” she said.
When repeated blood tests showed cortisol levels three or four times higher than normal, and a urine test came back at 720 when the normal range is 3 to 45, her suspicions were confirmed.
“From the very first time I had blood work done, I never once had a normal cortisol reading,” she said.
“That’s when I knew it had to be Cushing’s.”
Symptoms of Cushing’s disease and how it’s treated
Cushing’s syndrome or disease is a rare condition caused by having too much of a hormone called cortisol in your body.
The most common cause of Cushing’s syndrome is taking high doses of steroid medicine, such as hydrocortisone or prednisolone for a long time.
Sometimes, a small, non-cancerous growth in the pituitary gland (near the brain) or adrenal glands (near the kidneys) can also cause too much cortisol to be released.
These glands help control the amount of certain hormones in your body, including cortisol.
If the problem is caused by the pituitary gland it’s called Cushing’s disease. If it’s caused elsewhere in the body, it’s called Cushing’s syndrome.
The symptoms often come on gradually and include:
- Having more body fat on your neck, upper back, chest and tummy – your arms and legs may look thin compared to the rest of your body
- A red, round face – the redness may be harder to see on brown or black skin
- Skin that bruises easily and stretch marks on your tummy, hips, breasts and under your arms
- Muscle weakness, particularly at the top of your arms and legs
- Low sex drive (loss of libido)
- Changes in mood, such as feeling irritable, anxious or depressed
- Irregular periods or periods stopping completely
- Excessive hair growth (hirsutism)
Treatments can include:
- Gradually reducing how much steroid medicine you take (if steroid medicine is causing Cushing’s syndrome)
- Medicine to control the amount of cortisol your adrenal glands produce
- Radiotherapy to get rid of a non-cancerous growth in the pituitary gland
- Surgery to remove a growth in the pituitary gland or adrenal glands
- Surgery to remove your adrenal glands – after surgery you’ll need to take medicines to replace hormones made by your adrenal glands for the rest of your life
Source: NHS
Cushing’s disease is caused by having too much of the hormone cortisol in your body and can be caused by a small, non-cancerous growth in the pituitary gland.
Katelyn was sure she finally had an answer and found a neurosurgeon who specialised in pituitary and skull base tumours.
“I asked for a consultation before I even had the MRI, because I was so sure this was what I had and I was right,” she said.
When an MRI confirmed a 1.5cm tumour, she sent her labs and scans to his office. Within eight weeks of that first phone call, she was in surgery.
Katelyn’s symptoms were dismissed as postpartum related or ‘adult acne’[/caption]
She finally put the dots together herself and realised it was Cushing’s disease[/caption]
Katelyn pictured now[/caption]
Katelyn says: “I was the one who connected the dots and pushed for the right tests.
“I trusted myself, and that’s what saved me,” she said.
Now 30, Katelyn has detailed her symptoms and repeated dismissals by doctors on TikTok, reaching thousands of people.
“Since posting my videos, I’ve had hundreds of people messaging me with questions about my journey,” she said.
“It makes me sad that people have to dig through external sources and fight so hard for answers when something as simple as a blood test could change everything.
“A 1.5cm pituitary tumour absolutely wrecked me. Nothing will humble you more than living as a version of yourself you don’t recognise, with zero control over it.
“But this too shall pass. It gets better.”
