Home

Ania, Cyclical Pituitary BIo

September 15, 2025

MaryO Cyclic, Ectopic, News Items, Pituitary, Success Stories, Treatments , , , , , , , , , , , , Leave a comment

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.

From https://www.hormones-australia.org.au/ania-vs-cushings-disease-a-patients-story/

Hanna, Adrenal Post-Op

August 24, 2025

MaryO Adrenal, Adrenal Surgery, News Items, Success Stories, Treatments , , , , , , , , , , , Leave a comment

Hanna Pierce didn’t expect to learn she had a tumor on her adrenal gland during a CT scan. Just two weeks after delivering her second child and recovering from COVID-19, she went to urgent care with concerns about a possible blood clot. Instead, imaging revealed a tumor in her adrenal gland. “I didn’t have symptoms,” she said. “They were checking for something else and just happened to find it.”

That unexpected discovery in 2021 launched Pierce into a years-long journey that ultimately led to robotic surgery at Baylor Medicine with Dr. Feibi Zheng, an endocrine surgeon who specializes in treating adrenal tumors.

“Many people haven’t heard much about the adrenal glands,” said Zheng, assistant professor in the Division of Surgical Oncology. “They sit on top of the kidneys and produce hormones like cortisol that regulate everything from metabolism to the body’s stress response. If a tumor is overproducing cortisol, it can silently wreak havoc on the body over time.”

Doctors told Pierce that her tumor was consistently producing slightly elevated cortisol, a red flag. “My doctor told me if we left it alone, it could develop into diabetes or full-blown Cushing’s syndrome. At first, we just monitored it,” she said.

In the months and years that followed, Pierce did experience symptoms but attributed them to the demands of motherhood. “After my second child, I couldn’t lose weight no matter what I did. I had anxiety, constant fatigue in the afternoons, and I wasn’t sleeping well,” she recalled. “But I just chalked it up to being a mom of two.”

By 2024, her endocrinologist said it was time to act and referred her to Zheng, who confirmed the tumor was still producing excess cortisol. “Dr. Zheng told me I was going to feel so much better and explained what she was going to do,” Pierce said. “When I went to see her for the consultation, she was very informative. She didn’t pressure me to have surgery but explained everything to me.”

The Baylor Medicine endocrine surgery team, including Zheng and supported by physician assistant Holly Clayton, provided a seamless and collaborative care experience. “Our team-based model allows for better coordination and patient support,” said Clayton, who helped manage Pierce’s preoperative workup and performed her postop visit via telemedicine. “It was clear she wanted answers and a plan, and we were glad to be able to guide her through this process together.”

Zheng performed the adrenalectomy robotically, using a posterior approach — an advanced technique that involves going through the back instead of the front of the abdomen. “It’s a less common approach, but for the right patients, it can reduce pain and speed up recovery,” Zheng said.

Pierce said she felt calm going into the procedure. “Usually, I have white coat syndrome and feel anxious, but this time I didn’t. Everyone gave me step-by-step instructions, and Dr. Zheng explained everything clearly. I really felt like I was in good hands.”

Within a week or two of her June surgery, Pierce noticed changes. “I dropped four pounds almost immediately,” she said. “My face wasn’t as puffy. I felt less anxious and more like myself. Even though I was still recovering, I had more energy, and my body felt like it had reset.”

“Surgery to correct cortisol-producing tumors can make a major difference in quality of life, even if patients don’t meet the full criteria for a Cushing’s diagnosis,” Zheng said. “Mrs. Pierce’s case is a perfect example. She didn’t feel well, but she didn’t know why. Her endocrinologist saw [that] her metabolic parameters were getting worse. Now that the tumor is gone, her symptoms are improving, and her health trajectory is back on track.”

Just a month after surgery, Pierce says she has more energy and is continuing to lose weight. She’s relieved that a straightforward procedure made such a noticeable difference in how she feels.

From https://blogs.bcm.edu/2025/07/23/patient-finds-relief-after-adrenal-gland-tumor-removed/

Taylor D, Pituitary Bio

August 3, 2025

MaryO News Items, Pituitary, Pituitary Surgery, Treatments , , , , , , , Leave a comment

 

FLORENCE, S.C. – After struggling with a mysterious illness for nearly three years, Florence resident Taylor Davis is using her diagnosis of Cushing’s disease to raise awareness.

Davis was a healthy young adult when she started as a student at the University of South Carolina in the fall of 2015, but soon into her college career, she began experiencing several symptoms, such as weight gain, insomnia and panic attacks. Davis spent the next three years going from doctor to doctor trying to get a diagnosis for her symptoms.

Since her diagnosis, she has been trying to raise awareness through social media about her experience with Cushing’s disease.

Cushing’s disease is a hormonal disorder caused by high amounts of cortisol, or the stress hormone, in the body, according to the Mayo Clinic website.

During her freshman year, Davis began struggling with insomnia and started gaining weight. At the time, Davis brushed them off. Davis’s symptoms progressed to having panic attacks during her sophomore year.

“I’d be driving down the road, and my whole body would start freaking out,” Davis said. “I’d get heart palpitations, my heart rate would go crazy. I felt like I couldn’t breathe. It was intense panic attacks.”

In addition to the onset of panic attacks, Davis’ insomnia got worse, and she continued gaining weight. Davis also began losing clumps of hair, but she searched the internet and thought it was just normal.

The summer after her sophomore year, Davis said. she went to the doctor for answers with little luck.

“My doctor just kind of like brushed it off,” Davis said. “She told me it was probably just stress from school and stuff like that, and that I needed to diet and exercise more, but I was like, ‘A girl can only diet and exercise so much.’”

As Davis started her junior year, she said. her symptoms progressed to losing larger amounts of hair, which left bald spots that she tried to cover with extensions. At the time, Davis attributed the hair loss to bleaching her hair.

Then Davis began craving copious amounts of salt and large amounts of water.

“I started drinking water bottles by the case each day” and having to go to the bathroom frequently, Davis said. “It would just run straight through me.”

By the time the spring semester came, Davis’ panic attacks began causing blurred vision, nausea and dizziness. She said they felt like heart attacks.

Davis’ mother, Amy Lewis, got her admitted to McLeod Regional Medical Center for testing over spring break. Her kidneys were tested. An MRI and other tests were conducted, but Davis received no answers except that she was fine.

Davis’s panic attacks continued to get worse, so she and her mother began researching all of her symptoms for answers. Their research pointed them toward Cushing’s disease.

After another episode that caused Davis to pass out, her family took her to the emergency room. This time, the doctor had an answer: a brain tumor on her pituitary gland.

“It was so crazy the feeling I had at that moment,” Davis said. “I was so relieved, because I was so terrified for months at that point, and no one was going to help me because I had all of these problems.”

After the emergency room visit, Davis had to wait weeks for an endocrinologist appointment in Florence, but the doctor said she didn’t know enough to diagnose her.

She and her mom found an endocrinologist and neurosurgeon in Chapel Hill, North Carolina. The encodrinologist told her Cushing’s disease is too rare for her to have and said Davis needed to lose weight. The neurosurgeon told Davis an endocrinologist would have to prove that the tumor was causing Cushing’s disease before he would take it out.

By this point, Davis medically withdrew from USC because she could barely walk to class.

Determined to get answers, Davis joined several support groups on Facebook for Cushing’s disease.

The Facebook group led her to make an appointment with Dr. Theodore Friedman in Los Angeles, who was able to diagnose her with Cushing’s disease in October of 2018. In November of 2018, Davis had surgery to remove the tumor from her pituitary gland.

Since the surgery, the tumor removal has caused adrenal insufficiency, so Davis has to take a steroid-replacement medicine. She has been weaning herself off the medicine so that her pituitary gland will begin making cortisol again.

Davis has been using social media, especially Instagram, to post updates on her journey with Cushing’s disease. While she was at USC, she was a public relations major, and she has always loved telling stories.

“It just came natural to me as it (Cushing’s disease) started happening to start sharing my story,” Davis said.

Davis said she receives a few messages with questions about her experience every day from people who see her posts.

“ That (Cushing’s disease) really gets to me sometimes, but talking to those people, helping other people and sharing my story, that brings me back up,” Davis said. “That’s what keeps me happy and keeps me from getting to that dark depression.”

Davis said she is also in the process of starting a YouTube channel to document her experience with Cushing’s disease, because she wants to help others as they go through the process of a diagnosis.

This bio is from https://www.scnow.com/news/local/article_9c54e1e6-9615-11e9-84d3-8ff51e77dc88.html

From Misdiagnosis to Mission: How One Man’s Ordeal Became a Blueprint for Perseverance

July 26, 2025

MaryO book, Male, News Items, Pituitary , Leave a comment

When Dean Gregorie first developed a small hump below his neck at age sixteen, few paid it any mind. His mother, though, saw more. Weight gain. The round face. The bone-deep fatigue. To her, it spelled something far more complex: Cushing’s disease. But when she voiced her concerns, doctors smiled politely and waved them off.

“Teenagers gain weight,” they said.

What followed was not just a lapse in judgment; it was a decades-long system failure. Dean became the unseen patient. The ignored anomaly. No one had time to read the story. But like any great founder building something against the odds, he—and his tenacious family—refused to give up.

The early symptoms were dismissed with lazy diagnoses: poor diet, lack of exercise, and normal adolescence. But Helen Gregorie was relentless. She scoured medical journals. Dug through case studies. Her instincts shouted, “Cushing’s.” But doctors, operating within conventional playbooks, refused to explore a rare diagnosis. In startup parlance, they ignored the outlier data, clinging to averages instead of curiosity.

Dean was a patient who was overlooked not because of ambiguity, but because of predictability. If he had been a product, he would’ve been shut down in beta without anyone reading the specs.

The Burn Cost of Delay

Over the next two decades, Dean cycled through over fifty medical professionals. His symptoms worsened: purple striations, skyrocketing blood pressure, relentless fatigue. And yet the narrative never changed. “Lifestyle,” they told him.

Imagine pitching the same idea to dozens of venture capitalists, each one dismissing it for a reason you know isn’t true. Dean wasn’t lazy or noncompliant. He was fighting a disease no one bothered to look for.

Still, he climbed the corporate ladder in the automotive coatings industry. He earned promotions. He delivered results. But his body was breaking. And behind every workday win, there was a night spent battling exhaustion, shame, and the creeping belief that maybe it really was his fault.

A Systemic Breakdown

By 2013, his body sent a blunt memo: collapse. Dean landed in the ICU with diabetic ketoacidosis. An endocrinologist was consulted, but not to solve the underlying mystery—just the emergency. Despite glaring signs—signs his family had documented in detail—no one ordered a test for Cushing’s. Even after introducing a second endocrinologist, even after infections ravaged his system, even as his skin tore in a workplace fall, nothing changed.

It wasn’t until 2019 that a single primary care physician broke the inertia. He reviewed his whole history, acknowledged the pattern, and ordered the cortisol tests that would finally unveil the truth: Cushing’s disease. Twenty-three years after it all began.

Recovery Is Not Linear

The tumor was removed in 2020. But there was no triumphant return, no swift rebound. Recovery was glacial. Dean’s body, once flooded with cortisol, was suddenly starved of it. Cortisol had to be administered by medication. Energy flatlined. Nights stretched long and restless. Then came the back pain, unrelenting and tied to years of untreated structural damage.

“There wasn’t a morning I woke up feeling better,” Dean says. “There were just mornings I woke up and decided to try again.”

Sound familiar? Founders know this rhythm. Recovery isn’t always exponential growth; it’s the grind. The grit. The decision to show up despite the metrics still being red.

Turning Pain into Platform

This book, Surviving Cushing’s Disease: A Young Man’s Journey, is Dean’s first act of advocacy. Not a TED Talk. Not a foundation. Just this: a deeply personal, unapologetic account of what it means to be invisible in a system designed to treat averages, not anomalies.

In its pages, the symptoms of Cushing’s—unexplained weight gain, thinning skin, recurrent infections—are given shape and language. Not to diagnose, but to awaken awareness. Dean’s story is not a callout. It’s a call forward.

Startups, Survivors, and Second Opinions

Entrepreneurs can draw from Dean’s journey as much as patients can:

  • Follow the fringe data: When something feels off—even if others don’t see it—pursue it.
  • Pressure test the system: Experts are invaluable. But they are not infallible.
  • Leverage the pain: Your hardest chapters may become your most powerful pages.

Because sometimes, the most resilient visionaries don’t wear lanyards or give keynotes. They survive in silence for years. Then one day, they write.

And someone else learns how to speak up.

From https://www.entrepreneur.com/en-in/news-and-trends/from-misdiagnosis-to-mission-how-one-mans-ordeal-became-a/494902

About Dean’s Book

This narrative nonfiction novel chronicles my son’s twenty-year journey to get his Cushing’s disease diagnosed—a journey that took far too long. Throughout the book, I highlight opportunities for testing that could have been done according to endocrinologist guidelines. The core message is clear: early diagnosis is crucial for people to live vibrant lives.

Just When The Caterpillar Thought The World Was Over, It Becomes A Butterfly

In “Surviving Cushing’s Disease: A Young Man’s Journey,” author Chuck Knueve shares the compelling story of his son’s 20-year struggle for a correct diagnosis of Cushing’s disease.

As a Doctor of Pharmacy, Knueve offers a unique blend of medical insight and personal reflection set against the practices of endocrinologists in the US and UK. The book explores the challenges within the healthcare system, the relentless quest for answers, and the strong family bonds that support his son throughout.

This narrative highlights the technical aspects of dealing with a complex medical condition and celebrates the spirit of resilience and hope. Readers will find inspiration in this testament to enduring love and unwavering determination.

Pituitary: We Thought Dad Would Be Alright But We Were Wrong

April 5, 2025

MaryO In Memory, Male, News Items, Pituitary, radiation, Recurrence, Treatments , , , , , Leave a comment

The pituitary gland

A loving dad with ‘boundless energy and positivity’ died unexpectedly of a rare condition. Dave Whitfield was 59 when he died in December 2023.

His son Archie, 23, explained that his dad had been diagnosed with several brain tumours throughout his life but they had always been treatable by doctors. This changed in early 2023 however.

Another brain tumour led to Dave being diagnosed with Cushing’s syndrome, a rare condition caused by excessive cortisol in the body. Often this overproduction is due to a benign tumour in the pituitary or adrenal glands.

Cortisol helps the body cope with stressful situations, as well as reducing swelling and fighting off infections. Cushing’s syndrome is also much more common in women than in men.

Because of this, Archie and the wider family were taken aback about what happened to Dave. Speaking to the ECHO, Archie said: “Dad had brain tumours come and go over the last 15, 20 years.

“He was always able to either get the tumour operated on or have radiotherapy to have them removed. However, a couple years ago, a tumour came back, causing Cushing’s syndrome.

“As we’d obviously experienced him having brain tumours in the past, it was a case again of thinking, ‘ah it’s alright, he’s had them before, overcome them and life has carried on as normal.’

“This time with Cushing’s though, it affected him a lot more. Life was getting more and more difficult for him. They weren’t able to operate on the tumour due to the scar tissue. It was much harder to remove, so there was just a slow deterioration in his condition.”

Dave’s death was a massive loss to Archie and everyone who knew him. Archie said: “Dad had a boundless amount of energy and positivity. He was a very positive man.

“He would make everyone in the room feel like the most important person there. As a dad, he was an endless source of advice and support. He worked as a teacher. He loved getting the best out of his students and seeing the best in people generally.”

Football was a shared passion between Dave and Archie, who are both from Thirsk in North Yorkshire. Dave was a huge Arsenal fan which he passed to his son, who played for York City at youth level.

After his dad died, Archie started to think about doing something related to this passion in his dad’s memory. He said: “I’m a big believer in the fact that football unites more than it divides.

“Of course it has its divisions because it’s a massive game and people feel so passionate about their football clubs, but you go to a bar anywhere, and if you find two people interested in football, they’re gonna chat about it and in a friendly manner.

“After dad passed, I thought, I’d love to do something in his memory and spread the word about his life and his condition. I thought about running the length of the country from Land’s End to John O’Groats but it didn’t have that personal aspect.”

Archie then had the idea of an epic 800-mile run between all 20 Premier League football stadiums. He started his challenge yesterday at St James’ Park in Newcastle on April 2 and will finish at Arsenal’s Emirates Stadium on April 26.

Archie will reach Merseyside this weekend on Sunday April 6 to run past Anfield and Goodison Park. The following day, he will stop off at the headquarters of the Brain Charity on Norton Street in Liverpool city centre.

Archie will be raising money for the organisation during his run, which specialises in supporting people with neurological conditions. Archie said: “I think there’ll be some good support when I get into Liverpool.

“There’s obviously a rivalry between Arsenal and Liverpool and we’ve got many friends who are Liverpool fans. I have lots of memories of watching both Liverpool and Everton games with my dad over the years.

“We didn’t know about The Brain Charity while dad was still alive. But one thing we found with dad was that we were lucky and had such a big support network of friends and family.

“With him being so popular, so many people helped us out. So many people with these brain conditions don’t have that support network.

“That’s something The Brain Charity helps massively with. It’s been amazing to visit them and see the work they do. That was the main factor in us going with them.”

The Brain Charity’s CEO Pippa Sargent said: “Archie’s challenge is an incredible tribute to his dad, and we are so grateful for his support. Losing a loved one to a brain condition is devastating, and the money he is raising will help The Brain Charity support more families facing similar challenges. We’ll be behind him every step of the way.”

You can find out more about Archie’s challenge via his website. More information about The Brain Charity is available here.

Adapted from https://uk.news.yahoo.com/thought-dad-alright-were-wrong-030000141.html?

Danielle G, Pituitary Bio

July 28, 2018

MaryO News Items, Pituitary, Pituitary Surgery, Treatments , , , , , , Leave a comment

The pituitary gland

 

During pregnancy it’s expected for women to gain weight and sometimes struggle to lose it after giving birth.

Danielle Gselmann felt her health dramatically deteriorate five years ago, soon after she found out she was pregnant.

The Gold Coast mother had suddenly gained more than 20kg, found herself losing hair, constantly breaking bones and struggling to sleep.

Making matters worse, the young mother became severely depressed and noticed an unusual-looking ‘hump’ on her back.

Danielle went with her personal trainer husband Dean to get checked out and doctors assured her she was fine, claiming the symptoms were related to her pregnancy.

However, Dean was not convinced of the diagnosis because Danielle continued to eat healthy and work out but was still feeling terrible.

After piecing her symptoms together and doing extensive research, Dean believed Danielle was suffering from Cushing’s disease.

They went to a specialist to confirm Dean’s hunch and their worst fears were realised.

According to the Healthline, Cushing’s disease is caused by a tumour on the pituitary gland in the brain. This tumour then produces an abnormally high level of the hormone cortisol.

It is an extremely rare disease, affecting 10 to 15 people per million each year.

Speaking to Sunshine Coast Daily, Danielle said the disease affected her everyday life and took a dramatic toll on her family, causing her to miss out on watching her son grow.

‘Physically my body broke down…mentally I went numb,’ she said.

‘It affected everything…I missed so many moments because I can’t remember any of it’.

On July 19 Danielle had brain surgery and had the non-cancerous tumour successfully removed.

However, it will take two years for her pituitary gland to function on its own once again, and is warned she may continue to experience the harsh symptoms.

She was prescribed steroids to help manage the dramatic change her body has to cope with low cortisol levels, the publication reported.

The Gselmann’s now hope to raise awareness of the rare disease.

They have also launched a GoFundMe page requesting support for the family to look after Danielle as she recovers.

From https://en.brinkwire.com/news/gold-coast-mother-diagnosed-with-cushings-disease/

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Woman with hump on her neck diagnosed herself with Cushing’s disease

March 3, 2018

MaryO News Items, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , Leave a comment

Jennifer Trujillo, 33, noticed she was mysteriously gaining weight and losing muscle despite training for an athletic event in 2012

A woman who lived with unexplained weight gain and debilitating symptoms is finally getting her life back after diagnosing herself with a rare hormonal condition.

Jennifer Trujillo, 33, noticed she was mysteriously gaining weight and losing muscle despite training for an athletic event in 2012. She consulted doctors, but they were unable to identify the cause.

As time went on, the music consultant and video director,from Santa Fe, New Mexico, noticed that her hair was falling out, her skin bruised to the touch, her face was increasingly round, and her bones were becoming more fragile, with her foot breaking unexpectedly.

Her anxiety increased, and Jennifer, who also suffered from debilitating migraines, consulted her doctors again. Experts told her she might have a thyroid problem, bad genes or the start of osteoporosis.

‘I was training for an athletic event and started noticing that I was gaining weight, not losing it. I was losing muscle, not gaining it,’ Jennifer said, recounting her symptoms. ‘Shortly after that my blood pressure shot up through the roof.

‘My face was taking on a moon shape, very round and chubby. My anxiety was so high. Unbelievable migraines. I’d explain all these things to doctors for years and nobody would listen to me.

‘They said I may have a thyroid problem, or I may be getting osteoporosis, or I just had bad family genes and I would have to struggle to stay a good weight. But none of it made sense. I was even referred to a therapist because they said I was making up too many symptoms to make sense.’

To Jennifer, none of these explanations seemed plausible because she was working out twice a day and eating a vegan diet.

It wasn’t until she noticed a hump growing on the back of her neck, known as buffalo neck, that she googled her symptoms and found they matched those of Cushing’s disease.

Jennifer had always thought the bump was due to her ‘terrible posture’, but she discovered the hump was in fact a symptom of the condition.

‘One night I was looking at it and I was so disgusted so I googled the words “fat on back of neck”, and this thing called buffalo neck came up,’ she said. ‘From there, everything unfolded. I found Cushing’s disease and it was every symptom I had to a T, everything down to my foot breaking out of nowhere.

‘I took this information to my doctor and he was the only one who listened to me. He helped me and the rest is history. He himself was amazed I diagnosed myself with such a rare disease.

‘In my best description I would say Cushing’s slowly attacks different areas of your body. You literally experience pain and symptoms from head to toe, and it felt like each week I was waking up to something new.

‘I was able to maintain a somewhat tolerable weight before this because I became obsessed with working out and eating healthy because all this time I just thought I couldn’t lose weight. My doctors mentioned that if I hadn’t done all of this activity then I would have been in much worse shape. I’d easily be over 200 pounds, may have diabetes, osteoporosis, the list goes on.’

Cushing’s disease develops when the body makes too much cortisol. The condition often develops as a side effect of treatments for inflammation and autoimmune conditions, but can also develop as a result of a tumor inside one of the body’s glands.

The main treatment is to stop taking the medication causing it or to remove the tumor. If left untreated, the condition can cause high blood pressure, which can lead to heart attacks and strokes. It affects about one in 50,000 people.

Jennifer found out she had a tumor on her pituitary gland that caused the body to overproduce cortisol.

Thanks to her active lifestyle, Jennifer’s weight gain, which saw her going from 105 pounds to 145 pounds was not as significant as it could have been.

Jennifer had surgery in August last year to remove the tumor on her pituitary gland and has been rebuilding her life ever since.

For Jennifer, recovery has been more difficult than living with the condition itself. She sometimes struggles to get out of bed as her body adjusts to producing less cortisol, meaning she feels less energetic.

However, her symptoms started to disappear almost instantly after the operation.

‘After surgery my symptoms quickly started to disappear like rapid fire. It was crazy,’ she said. ‘My weight dropped. I stopped bruising. The hump on my neck went down. My bones healed. My hair grew back. My face returned to its normal shape, and the best part, my blood pressure returned to normal.

‘My friends and family are amazed. Every time I see someone new they say I look like a completely different person.

‘Recovery is hard. I’m still going through it. Believe it or not it’s been harder than the actual disease. When your body is used to producing so much cortisol to all the sudden be producing nothing, your body crashes.

‘Some days it’s hard for me to get out of bed and move, I’m tired all the time and have zero energy. I’m only able to walk at the gym maybe two days a week. I’m currently on cortisol replacements so that my body levels out. Every two weeks I reduce my medication because the goal is to be completely off it and have a normal functioning pituitary gland.

‘However, every time I reduce my body crashes all over again, so it’s like a never-ending cycle. But I know that someday it will get better so I’m getting through it.’

Jennifer, who has been charting her progress on Instagram, shared her advice to others who might be suffering from similar conditions.

‘Never give up trying to find an answer and push your doctors to listen to you,’ she said.

‘If I hadn’t discovered this on my own I’d probably still be suffering.’

Read more:http://www.dailymail.co.uk/femail/article-5450135/Woman-diagnoses-rare-hormonal-condition.html

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Year End Report

December 31, 2015

MaryO News Items Leave a comment

Screenshot 2015-12-29 19.42.02

 

Read the whole report here (Looks like I need to add some December bios!)

After gaining 120 pounds in 1 year, rare diagnosis saves man’s life

June 20, 2015

MaryO Male, News Items, Pituitary, Pituitary Surgery, Success Stories, Treatments , , , , , , , , , , , Leave a comment

Donelle Trotman was only in his 30s when his health suddenly took a strange and frightening turn.

He was rapidly gaining weight — more than 100 pounds in one year. His upper torso was getting bigger, but not his legs. And he felt overwhelmingly tired.

“My body just started changing,” the Staten Island, New York, native told TODAY as part of a three-day series, “Medical Mysteries,” looking at people who have recovered from rare diseases.

Donelle Trotman, right, reached 366 pounds at his heaviest.

It was especially puzzling because Trotman had never had weight issues before.

In school, Trotman was never a skinny kid, but he wasn’t overweight. He loved sports, playing both basketball and baseball.

So as he entered adulthood, he was active and in good shape. Then, three years ago, he suddenly began to gain weight.

“It was just specific places: My stomach, under my arms, my back of my neck, my face, the bottom of my back,” Trotman said. “My legs stayed the same for a long time.”

To lose the extra pounds, Trotman began running, working out and lifting weights. Nothing worked.

In the span of one year, Trotman gained more than 120 pounds, topping the scale at 366 pounds, twice the amount he weighed at 18.

“I doubled, like, I got a whole person on me,” he said.

There were other alarming changes. Trotman became so easily tired that he’d get out of breath just by chewing food. When he woke up seeing double three months ago, he knew it was time to go to the hospital.

Doctors ran a flurry of tests, but the results offered few clues, leaving everyone puzzled. Then one day, an intern noticed stretch marks all over Trotman’s body, a telltale sign that solved the mystery. Trotman had Cushing’s disease, a rare condition that affects fewer than 50,000 people in the U.S. every year.

Trotman’s weight gain was being caused by a tiny tumor at the base of his brain, prompting his body to produce too much of the hormone cortisol. He had some of the classic symptoms: major weight gain in his upper body, skin problems and acne, plus fatigue.

Dr. John Boockvar and Dr. Peter Costantino at New York’s Lenox Hill Hospital discovered Trotman had steroid levels ten times higher than normal.

“In Cushing’s disease, the pituitary gland has a small growth that releases a single hormone that causes the body to live with very high levels of steroids. The skin becomes very thin. You get increased acne. You can grow hair. You start sweating. You gain a lot of fat,” Boockvar said.

There was no time to lose: Untreated, Cushing’s is a fatal disease. Trotman was getting close to the point where doctors would not be able to reverse the changes, Costantino noted. He underwent surgery two weeks ago and had the growth successfully removed.

“The tumor was no bigger than the size of the tip of my pen,” Boockvar said. “And that something so small can cause a man to grow to 350 pounds and absolutely destroy his life is rather remarkable.”

These days, Trotman is feeling much better. His main focus now is to lose the weight he gained and regain an active lifestyle. He hopes to play basketball with his son soon.

“It’s wonderful. Every day it’s just like I feel a little stronger,” he said.

Doctors say Trotman will continue to lose weight and can shoot hoops with his son in about three months. There is an 8-10 percent chance the disease could come back, but Trotman said he knows what to look for now.

One of the reasons Trotman wanted to share his story is so others might recognize the symptoms of Cushing’s, although doctors stress it is a very rare illness.

via After gaining 120 pounds in 1 year, rare diagnosis saves man’s life – TODAY.com.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Brain tumour survivor draws comfort | Toronto Star

June 16, 2015

MaryO Adrenal, Adrenal Surgery, News Items, Pituitary, Pituitary Surgery, radiation, Treatments , , , , , , , 1 Comment

Erella Ganon has a brain tumour, and she wants everyone to know about it.

The 56-year-old woman has had brain surgery three times, had both of her adrenal glands removed and been through multiple bouts of radiation.

Ganon chronicles her health journey through a series of images in what she calls a “graphic autobiography.”

It’s a habit she got into as teenager. Every day she uses fountain pens to draw a picture of what she’s experiencing.

For the past decade those pictures have illustrated her battle with Cushing’s disease, a rare disorder that makes her pituitary gland release too much ATCH (adrenocorticotrophic hormone), stimulating the production of cortisol, a stress hormone, creating tumours.

Ganon shares her images on an online blog that in turn offers inspiration and comfort to others struggling with illness.

The hand-drawn pictures present an open and often humorous look at life with disease. The images are instantly relatable and depict everything from hair loss to hospital food.

“Everybody who’s touched by catastrophic disease… has a feeling of powerlessness, but the artwork and putting it out there is the opposite of that,” said Ganon.

via Brain tumour survivor draws comfort | Toronto Star.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Older Entries Newer Entries