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Queensland woman with rare hormonal disorder shares story after she was misdiagnosed and dismissed by doctors

Shari Dawson was in her early twenties when she noticed her shoes didn’t fit quite right anymore.

She usually shared footwear with her mum, who was also a size seven, but her feet were now noticeably bigger.

Shari was many years past puberty, so surely she couldn’t still be growing?

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It also wasn’t the first thing she had noticed was different with her body at that time.

In 2013, when she was 22, Shari was on a holiday in Europe with friends when a selfie she took made her look twice.

Her jaw looked larger than normal, and her top and bottom teeth were touching, when usually she had a slight overbite.

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“I looked at it and thought, ‘It’s just so strange, my mouth and my smile are just so different than what they used to be’,” the now 32-year-old from the Sunshine Coast told 7NEWS.com.au.

From this point, Shari’s jaw continued to get bigger, and she began noticing a host of odd symptoms.

She had severe joint pain, was inexplicably gaining weight and, like her feet, her hands were getting larger — the rings she used to wear no longer fit.

Shari was 22 and on holiday in Europe when she noticed she looked slightly different in a selfie. Credit: Supplied

Doctors told her it was nothing, that she wasn’t a teenager anymore and that her body was changing.

She was just putting on weight due to a poor diet and parts of her body looked larger due to fluid retention.

Shari knew something was wrong, but began to doubt herself – was this all in her head?

“There were moments and I was like, ‘Is this actually happening to me or am I just thinking this is happening?’,” she said.

“It was really, really frustrating.”

With her appearance changing, her self-confidence also took a significant beating.

“I always was naturally quite small and looked a certain way and then over time, I just changed so much,” she said.

“It’s quite a surreal thing.”

At this point, Shari was now wearing shoes that were either a size 10-and-a-half or 11.

Shari before the symptoms of acromegaly (left) and after (right) when it was still undiagnosed. Credit: Supplied

In 2014, Shari’s symptoms peaked. She was particularly having issues with severe, debilitating migraines.

During a bad episode, she couldn’t go to work and would be vomiting nonstop.

Shari suffered in silence with these migraines for several years until one day in March 2020 it became so bad she self-presented to hospital.

With her history of migraines, doctors gave her some fluids and medication and sent her home, telling her to come back if it got worse.

It did.

“At this point, I was like, ‘Something is wrong’,” Shari said.

“Normally when they (the migraines) last this long, the pain sort of eases as the days get on, but this pain just wasn’t easing.”

A few days after her first hospital visit she went back, underwent some scans and was told she needed emergency brain surgery.

She had a tumour on her pituitary gland, and it was bleeding.

It had been silently growing for seven years.

The tumour on Shari’s pituitary gland had silently been growing for several years. Credit: Supplied

The pituitary is a small, pea-sized gland found at the base of the brain. It makes several different hormones, such as the growth hormone, and is also in charge of the other glands in the body – telling them what to do.

It was at this point, just before she was wheeled into the operating room, that Shari received the diagnosis that would explain everything.

She had a rare disorder called acromegaly.

Doctors told Shari the tumour on her pituitary gland was causing it to secrete too much of the growth hormone into her body, which led her to develop acromegaly.

The disorder causes adults to grow abnormally and affects their metabolism.

It’s estimated between 715 and 3,500 Australians are impacted by the disorder each year, according to the Australian Pituitary Foundation.

For Shari, everything now made sense.

“I had this neurosurgeon asking me all these questions about my body, about my feet growing,” she said.

“(He said) ‘Do rings not fit your fingers anymore? Do you have skin tags on you?’

“Everything he said, every symptom I just was like, ‘Yes, yes, yes’, I could tick every box.”

Shari and her mum before Shari suffered from acromegaly. Credit: Supplied

Shari said the diagnosis was an “overwhelming sense of validation” — she wasn’t crazy, and it wasn’t all in her head.

“I finally knew what had been happening to me for all these years,” she said.

“I could finally forgive myself because I thought I was doing something wrong this whole time.”

Doctors were able to remove most of the tumour, but some was left behind due to being in an inoperable spot.

Shari commenced a treatment of medication but due to unpleasant side effects she stopped — and instead underwent a second brain surgery in 2021 to remove the residual tumour.

It was successful, and, for a period of time, Shari said she felt “normal”.

“All of my symptoms started reducing,” she said.

”My joint pain went, the swelling went, all the liquid, all the extra fluid I had in my body went and I dropped a lot of the weight that I put on.

“The structural things and the structural changes to my bones and things like that, that will never reverse, but a lot of soft tissue reversed.”

Shari and her husband Chris after her first surgery. Credit: Supplied

Shari married her now-husband Chris, and they went on a long and well-deserved honeymoon and began their IVF journey.

Sadly, this sense of normalcy was short-lived.

During a round of IVF in January this year, a blood test revealed the worst.

“My heart sank,” Shari said.

Her growth hormone levels were raised – the tumour was back.

At this point, Shari is weighing up treatment options, with her main focus still on starting a family, and getting through the IVF process.

She now works as a general manager for the Australian Pituitary Foundation after getting in contact with the organisation for support when she was first diagnosed.

She is passionate about sharing her story, particularly because of the fact the disorder is so rare, and so often misdiagnosed.

Shari wants more health practitioners to be aware of acromegaly and its symptoms, with the disorder often masked by other conditions such as diabetes and high blood pressure, which commonly occur alongside it.

“(I want) doctors to sort of look deeper and know that there are these conditions that are masked by other things, and for patients and people to not be afraid to advocate for themselves,” she said.

“I wish I didn’t just start accepting, you know, everyone telling me that everything was OK.

“Even if I can help one person get that earlier diagnosis and better outcome, then I would be a very happy girl.”

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