While other journalists might be on the hunt for a cushy job, Ania Stepien is on a different mission—she’s searching for a Cushing’s job.
Cushing’s disease is a rare condition that can take years to identify. For patients, the path to a diagnosis is often less of a hero’s journey and more like a Christopher Nolan adaptation of a Kafka novel.
After spending her 30s in a quagmire of maddening misdiagnoses, debilitating symptoms, and disastrous side-effects, Ania is now a postgraduate researcher in journalism aiming to change Australia’s healthcare system for the better.
The ups and downs of cortisol levels
The inside of Ania’s head was remarkable even before the pituitary tumour. The child star of 2001’s teen drama Cybergirl, Ania had since gone on to work with traumatised children with a number of international NGOs.
Shortly after returning from a job helping underage asylum seekers in Nauru, she began to fall ill. She gained half of her body weight in just a few weeks, and her face became swollen and pockmarked with sores. She became so foggy-headed she couldn’t keep up with her job.
Concerned that Ania had contracted a mysterious tropical disease, her GP referred her to a dermatologist, a tropical disease specialist, and an immunologist – and then retired.
In reality, Ania was suffering the first symptoms of a tumour in her pituitary gland that was causing an overproduction of cortisol. This hormone is well-know for its role in stress, but also assists in the day-to-day running of organs. Having its fingers in so many of the body’s pies means that when cortisol goes wrong, all sorts of seemingly unrelated effects can happen.
Unfortunately for Ania, all her tests came back normal and the specialists all agreed that she was a perfectly healthy person who had just coincidentally put on a lot of weight and developed unexplained lesions. Her new GP accused her of causing her own wounds and referred her to a psychiatrist.
This experience was repeated when she sought out other GPs and dermatologists. She was prescribed antidepressants and weight loss regimes, and refused further referrals. Her own family began to doubt that her illness had a physical cause.
A vicious cycle
And then, suddenly, Ania got better. The weight fell off, her face healed, and she got a new job.
Cyclical Cushing’s disease is thought to happen when pituitary tumour causing Cushing’s disease changes or haemorrhages, or levels of other regulatory hormones fluctuate. This creates an even bigger challenge for patients and doctors to understand what is happening.
When symptoms returned a few months later, Ania received the same sceptical treatment from GPs. In desperation, she turned to alternative medicine. She went on fasting retreats, accepting blessings from holy figures, and was prescribed hundreds of dollars of herbal tea.
Eventually, Ania found it difficult to walk and breathe. When nurses at the ER thought she was having a panic attack, Ania insisted on seeing a doctor, who discharged her with a letter suggesting she be checked for Cushing’s disease.
Another new GP gave her a 24-hour urine test for cortisol – which came back normal. Unable to get a referral to an endocrinologist but desperate for answers, Ania began to dive into online research, reading medical journals, patient stories, and treatment protocols. She even contacted an animal scientist who specialised in testing farm animals’ hair for cortisol.
Months later, an old family friend in the medical field moved back to Ania’s home town, and Ania convinced them to write a referral.
The impatient patient
At the first appointment, the endocrinologist ordered a dexamethasone suppression test (which measures how easily a person’s cortisol level can be suppressed), 24 urine tests (to measure excreted cortisol over a period of days) and an MRI. The tests read between normal and high – but the MRI revealed a 6mm tumour in her pituitary gland.
However, as pituitary tumours can sometimes be benign and the cortisol tests came back with mixed results, her doctor wanted to continue testing before giving a definite diagnosis.
Over the next few months, Ania deteriorated. She found it difficult to take a shower, let alone work, but Centrelink didn’t accept Cushing’s disease as a disability. She moved back in with her parents.
As cortisol levels are constantly in flux, continually changing according to the time of day and in response to stressful events and other hormones, defining a normal level and an abnormal level is actually quite a difficult task. Because of this, cortisol testing usually involves performing many different kinds tests over a period of days or weeks to figure out longer-term trends.
The monthly cortisol blood tests Ania was doing showed alternately normal and high cortisol levels. She read about a specialist lab in Europe that tested hair for long-term cortisol trends and her endocrinologist agreed to send over a sample – but it was lost in the post.
Having read about more frequent testing protocols overseas, and becoming increasingly frustrated, Ania began photocopying her pathology referrals, testing her cortisol more than monthly, and requesting the results to be sent to her as well as her doctor.
But building up reams of results did not help her endocrinologist make a diagnosis. Instead, she suggested Ania get a second opinion – but feeling this might just be a flex on behalf of the doctor and not wanting to question her authority, Ania refused.
However, experiencing relentless symptoms and after months of fruitless testing, she secured an appointment with Associate Professor Ann McCormack, a specialist in pituitary diseases (and senior staff specialist at Sydney’s St Vincent’s Hospital, head of the Hormones and Cancer Group at the Garvan Institute of Medical Research, chair of the St Vincent’s Campus pituitary multidisciplinary team, founder of the Sydney Pituitary Collaborative Group, co-chair of the Australia and New Zealand Pituitary Alliance, and a board member of the International Pituitary Society.)
Faced with Ania’s folders of results, A/Prof McCormack diagnosed Ania with Cushing’s disease on the spot and immediately booked surgery to remove the pituitary tumour.
The stressful hormone
The surgery was a success – in some ways. While the tumour was successfully removed, her hormones nosedived. Rather than producing too much cortisol, her body refused to produce enough. After five years of constant nausea, fatigue and paralysis, Ania is now just beginning to emerge.
The cortisol expert
Now completing a Master’s of Journalism, Ania’s next mission is to raise awareness about pituitary disorders among doctors and patients, and address social media misinformation about cortisol.
Having suffered from excessive and insufficient hormone levels for almost a decade, Ania knows more than most what an abnormal cortisol level feels like. So when TikTok influencers blame their problems on adrenal fatigue – the idea that constant stress can send adrenal glands into a hyperactive or hypoactive state – Ania has years of research and personal experience to add to the discussion.
Her message for doctors is clear: be aware that you’re a gatekeeper. Start by believing patients, and try to see the bigger picture.
She has similarly strong advice for patients: you are your own best advocate, and the more you know about your own condition the better. A good GP is essential to have on your side, and be wary of alternative medicine practitioners promising to know more than Western medicine. Importantly, superannuation often comes with income protection insurance that can be called upon if government services fail to step up.
