HEALTH

What you need to know about Cushing’s syndrome

5 March, 2024 . 0

Actress Amy Schumer recently shared her Cushing’s syndrome diagnosis. Here’s what you should know about this rare but serious hormonal disorder.

Weight gain, fatigue and a rounded face are some of the common but easily overlooked signs of Cushing’s syndrome.

This was the case for actress Amy Schumer, who was oblivious to the hormonal disorder until fans pointed out the symptoms.

“(My face) is puffier than normal right now,” Amy acknowledged on Instagram, weeks before her Cushing’s diagnosis.

“There are some medical and hormonal things going on in my world right now but I’m okay.”

She’s since shared her diagnosis of Cushing’s syndrome, an often chronic disease that can be hard to diagnose.

What is Cushing’s syndrome?

Cushing’s syndrome occurs when the body is exposed to high levels of cortisol.

According to endocrinologist and Associate Professor Ann McCormack, of St Vincent’s Hospital Sydney, it’s often caused by a pituitary tumour.

“Approximately 70 per cent of Cushing’s cases will come from a tumour in the pituitary that results in excess cortisol from the adrenal glands,” Assoc Prof McCormack says.

Once a pituitary tumour is identified, the condition is reclassified as Cushing’s disease; all other types of Cushing’s are referred to as Cushing’s syndrome.

“Cushing’s can also be caused by an adrenal tumour, or a tumour somewhere else in the body,” Assoc Prof McCormack says.

The prolonged use of steroid medications can also cause Cushing’s syndrome.

“There are a number of steroids we use in medicine generally for treatment of inflammatory conditions,” Assoc Prof McCormack explains.

“They can effectively act like cortisol.”

What are the symptoms of Cushing’s syndrome?

Common signs and symptoms can include:

Muscle loss in the arms and legs
A rounded face
Increased back fat between the shoulders
Fatigue
High blood pressure
Skin problems
Mood swings
Increased facial hair in women
Weakened bones

And while Cushing’s can present in men, a 2019 study noted that women are up to five times more likely to experience it.

The condition can present differently in everyone, which Assoc Prof McCormack says makes it difficult to diagnose.

“People respond to the hormone (cortisol) differently, and if you’ve had Cushing’s for longer, then you’re more likely to notice the visible symptoms,” she notes.

“For instance, having red-purple stretch marks on the skin, easy and excessive bruising, or really fragile bones may indicate something more.

“But not everyone will have these symptoms and that’s why it’s so hard to diagnose”

How is Cushing’s syndrome diagnosed?

Due to a lack of awareness and the insidious nature of Cushing’s, Assoc Prof McCormack says diagnosis is often a lengthy process.

“It’s one of the hardest diagnoses to make in medicine,” she says.

Diagnosis can involve a series of medical tests and scans to identify the source of the body’s increased cortisol.

“Biochemically, it can be really difficult to pick, because we’re looking at a stress hormone which naturally fluctuates,” Assoc Prof McCormack says.

Around 300 to 1,600 Australians are living with Cushing’s disease, according to the Australian Pituitary Foundation (APF) – one of whom is Malini Raj.

“I was diagnosed in 2013 with Cushing’s and it took me 20 years to get diagnosed,” Malini, who is a co-chair of the APF, says.

“I was feeling generally unwell, I was putting on weight and had low energy.

“My blood tests were showing different things, but they just couldn’t pinpoint what it was.”

What is the treatment for Cushing’s syndrome?

For Cushing’s disease, surgery is required to remove the tumour.

“Sometimes it’s hard to pinpoint where the tumour is but if a pituitary tumour is suspected, then pituitary surgery can be successful,” Assoc Prof McCormack says.

“If surgery is unsuccessful, we have radiation or medications that can block the production of cortisol from the adrenal glands (to) try to reduce the effects.”

She says when Cushing’s syndrome is caused by steroid medication, treatment can vary. While some people can wean off cortisol-raising medication and find alternatives, others may still need it to manage a separate, underlying condition such as arthritis or lung disease.

“Unfortunately, some people live with being on steroids to manage their underlying condition and will live with a degree of Cushing’s syndrome,” Assoc Prof McCormack says.

Read more on health conditions:

Written by Hayley Hinze.