Cushing’s Disease

💉 Helpful Doctors: California

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Dr. Daniel Kelly, a board certified neurosurgeon, is Director of the Pacific Neuroscience Institute and Professor of Neurosurgery at the John Wayne Cancer Institute.

Considered to be one of the best neurosurgeons in the US and a multiple recipient of the Patients’ Choice Award, Dr. Kelly is internationally recognized in the field of minimally invasive keyhole surgery for brain, pituitary and skull base tumors.

He has one of the world’s largest series in endonasal surgery with over 2000 procedures performed including over 800 endonasal endoscopic surgeries, and over 2000 craniotomies for brain and skull base tumors. His current surgical practice encompasses the full spectrum of brain and skull base tumors, both benign and malignant, treated with minimally invasive and conventional approaches.

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Basics: What Causes Abnormal Cortisol Levels?

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Cortisol isn’t bad; you need it to help regulate your responses to life. Regulation involves a very complex interplay of feedback loops between the hypothalamus, pituitary gland, and adrenal glands, says Dr. Singh.

“In general, cortisol levels tend to peak in the late morning and gradually decline throughout the day,” he explains. “When a stressful event occurs, the increased cortisol will work alongside our ‘fight or flight’ mechanisms to either upregulate or downregulate bodily functions. [Affected systems include] the central nervous system, cardiovascular system, gastrointestinal system, or immune system.”

In addition to normal processes that trigger or suppress cortisol release, levels can also be affected by different medical conditions, Dr. Singh says. For example, if someone has abnormally high levels of cortisol, this is called Cushing’s syndrome, which is typically caused by a tumor affecting any of the glands that take part in the process of cortisol production.

When people suffer from abnormally low levels of cortisol, it’s called Addison’s disease. It generally occurs due to adrenal gland dysfunction, but could also be the result of abnormal functioning of any of the other glands in the cortisol production process.

Finally, if you use corticosteroid medications such as prednisone or dexamethasone, prolonged use will result in excessive cortisol production, Dr. Singh says.

“If the medication is not adequately tapered down when discontinued, the body’s ability to create cortisol can become permanently impaired,” he says.

From https://www.yahoo.com/lifestyle/manage-pesky-stress-hormone-cortisol-184900397.html

 

Research Study for Patients Diagnosed with Cushing’s Disease and Their Caregivers

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We’re looking for caregivers to loved ones diagnosed with Cushing’s Disease or patients diagnosed with Cushing’s Disease to participate in a research study.

✅ Who: Patients and caregivers of loved ones

⏳ What: 30-minute Online Survey

💰 Compensation: $60.00

Sign up here: https://rarepatientvoice.com/CushingsHelp/

 

🎬 Video: Taylor Davis Spreads Awareness about Cushing’s Disease

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FLORENCE, SC (WBTW) – 21-year-old Taylor Davis, spent nearly three years battling a mysterious illness called Cushing’s Disease.

“I could barely walk to class anymore. I was in pain. I gained like 70 pounds, despite extreme dieting and exercising,” said Davis.

When Davis enrolled into her spring semester classes at USC, she started experiencing several symptoms.

“I noticed my grades started to take a fall and I was like ok something is seriously wrong here because I’ve never had trouble in school and I could stay up studying all night long and not remember anything the next day,” said Davis.

Davis went from doctor to doctor, but no one could figure out what was wrong with her.

“I thought I was going crazy. Every doctor would say keep trying to diet and exercise and we’ll get you on some medication for your depression and your anxiety,” said Davis.

After dropping out of USC and spending time in the emergency room, a Cushing’s Disease Facebook group led her to a research doctor in California.

“Around October is when the doctor officially diagnosed me and within a month I had my brain surgery scheduled,” said Davis.

Fast forward a couple months later, Davis is thankful to share her experiences on social media and help others going through the same disease.

“I post about it all the time and by using the hashtags for Cushing’s disease, I probably get three to four messages a day from people all over the world. I’ve had people message me in Spanish and I have to use google translate to try and help them,” said Davis.

From https://www.wbtw.com/news/a-woman-in-the-pee-dee-spreads-awareness-on-mysterious-disease/

😳 A *Bit* Misleading

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Headline: “‘I gained 10st due to a rare condition – I lost it again by doing a simple daily exercise’
Hannah Mai, 37, managed to lose the weight in two years by doing a simple daily exercise”

She did lose the weight but, reading the article, also “Following her diagnosis, Hannah underwent brain surgery in February 2021 to remove the pituitary tumour causing her condition and was prescribed steroids to manage it.”

Just a bit of a misleading header.

Here’s the whole article.  And it was a bit more than a “simple daily exercise” and removing a pituitary tumor!

A woman who piled on 10 stone due to a rare condition has shed the weight in just two years, thanks to a daily exercise routine.

Hannah Mai, 37, was diagnosed with Cushing’s disease, a hormonal disorder caused by high cortisol levels, in October 2020 after gaining 10 stone in just two and a half years.

Following her diagnosis, Hannah underwent brain surgery in February 2021 to remove the pituitary tumour causing her condition and was prescribed steroids to manage it.

In April, 2023, Hannah was taken off her steroid medication and was determined to shed the 10 stone she gained due to the disease – who weighed 20 stone 5lbs and was a size 26.

Through a combination of high-protein meals and daily pilates sessions, Hannah impressively slimmed down to 10 stone 4lbs, fitting into a size 10, all within two years.

Hannah, from Coventry, Warwickshire, said: “Once I started losing the weight, I just kept going.

“It isn’t easy, you really have to push yourself, and focus on who you want to be and think about who you want to be.”

When she turned 30, Hannah noticed she started gaining weight and went from nine stone to 16 stone in a few months. She revealed that despite frequent doctor visits, she was constantly asked if she was expecting or if her weight gain was due to hormonal changes.

Hannah shared: “I was always around nine stone, but I noticed how I started to gain a bit of weight. I knew there was something wrong with me, but people around me thought I had changed my diet and asked if I was eating more.

“I was asked if I was pregnant six times, and told that my weight gain could be caused by hormones. I went up to 20 stone at my heaviest.”

In October 2020, over two years since her weight began to increase, Hannah woke up one day with a hunched back.

After a quick Google search suggested Cushing’s disease as a possible cause, and noticing the other symptoms including weight gain, she immediately sought medical advice.

She was referred to University Hospital Coventry & Warwickshire, where an MRI scan and blood tests confirmed she had Cushing’s disease.

Hannah added: “I printed off the list of symptoms and took them to my doctor, who then referred me to the hospital.

“There, I had an MRI scan and blood tests, which confirmed that I had Cushing’s disease.

“I was relieved but scared when I got the diagnosis. I had been saying for years that there was something wrong with me.”

Five months post-diagnosis, in February 2021, Hannah underwent brain surgery to remove the pituitary tumour causing the condition, and was put on steroids to manage her symptoms.

After battling with her health and spending two years on steroids to manage her condition, Hannah came off the medication as her health improved.

After she came off her medication, Hannah said she knew she was better and became determined to lose weight.

She said: “It wasn’t easy to lose weight whilst I was still on steroids, as soon as I came off them, I knew this was my body and I was a lot better.

“I really pushed myself, I worked super hard, cut out all sugar, cut out dairy, and gluten after I was diagnosed with celiac disease.

“I have a low-carb, high-protein diet with lots of vegetables, and I do pilates every day.”

Her commitment paid off as she impressively slimmed down from 20 stone to 10 stone within two years. She went from wearing a size 26 clothes to wearing a size 10 – back to where she was before Cushing’s disease.

Hannah said: “I am super proud of myself, I am always worried that the weight will come back.

“I feel so much happier. When I look back at myself, I just can’t believe I was that size.

“When I look back at old photos, I feel very sad about what happened to me, but it makes me think that I need to be proud about how far I have come.”

Adapted from https://www.mirror.co.uk/news/health/i-gained-10st-due-rare-35432462

â„č Basics: Cushing’s Syndrome vs Cushing’s Disease

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What is Cushing’s syndrome?

Any condition that causes the adrenal gland to produce excessive cortisol results in the disorder Cushing’s syndrome. Cushing syndrome is characterized by facial and torso obesity, high blood pressure, stretch marks on the belly, weakness, osteoporosis, and facial hair growth in females.

Cushing’s syndrome has many possible causes including tumors within the adrenal gland, adrenal gland stimulating hormone (ACTH) produced from cancer such as lung cancer, and ACTH excessively produced from a pituitary tumors within the brain. ACTH is normally produced by the pituitary gland (located in the center of the brain) to stimulate the adrenal glands’ natural production of cortisol, especially in times of stress.

When a pituitary tumor secretes excessive ACTH, the disorder resulting from this specific form of Cushing’s syndrome is referred to as Cushing’s disease.

As an aside, it should be noted that doctors will sometimes describe certain patients with features identical to Cushing’s syndrome as having ‘Cushingoid’ features. Typically, these features are occurring as side effects of cortisone-related medications, such as prednisone and prednisolone.

📚 A Cushing’s Collection: A Humorous Journey Surviving Cushing’s Disease, Diabetes Insipidus, and a Bilateral Adrenalectomy

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The author of this book (A Cushing’s Collection: A Humorous Journey Surviving Cushing’s Disease, Diabetes Insipidus, and a Bilateral Adrenalectomy) has submitted a bio and is a member of the Cushing’s Help message boards.

From Amazon:

Diagnosed with a rare disease that only affects between two and ten people per million, Marie Conley used emails to communicate with family, friends, and co-workers to keep them apprised of the diagnosis and prognosis of Cushing’s disease and the many complications she experienced on this journey. Her ironic humor and raw, emotional approach helps bring hope to those touched by this rare and unrelenting disease.

In her mid-thirties, Conley, who strived to keep herself healthy while maintaining the delicate balance of raising a young child, keeping a home, and a demanding career, began to experience a variety of unexplained maladies inconsistent with her life style.Because of the elusive nature of Cushing’s disease, the treatment is a long and complicated process of trial and error.

At this time, there is no cure, largely due to the fact that Cushing’s disease is considered an “orphan disease.” As is her nature, she has decided to “adopt” this “orphan” and is doing everything she can to bring awareness to this disease.Conley’s tenacious spirit and determination would not allow this insidious disease to triumph over her life. Armed with her laptop as the only weapon available in the sterility of the recovery room, the author attacks the keyboard with a vengeance to let friends and family know that in this battle, there is no surrender.

🎬 Video: Cushing Disease & ACTH-Secreting Pituitary Tumors

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Irina Bancos, M.D., an endocrinologist at Mayo Clinic in Rochester, Minnesota, and Jamie J. Van Gompel, M.D., a neurosurgeon at Mayo Clinic’s campus in Minnesota, discuss Mayo’s multidisciplinary approach to adrenocorticotropic hormone (ACTH)-secreting pituitary tumors. Pituitary tumors are common and often don’t cause problems. But some pituitary tumors produce the hormone ACTH, which stimulates the production of another hormone (cortisol). Overproduction of cortisol can result in Cushing syndrome, with signs and symptoms such as weight gain, skin changes and fatigue. Cushing syndrome is rare but can cause significant long-term health problems.

Treatment for Cushing syndrome caused by a pituitary tumor generally involves surgery to remove the tumor. Radiation therapy and occasionally adrenal surgery may be needed to treat Cushing syndrome caused by ACTH-secreting pituitary tumors. Mayo Clinic has experience with this rare condition.

â„č Precision One Health Initiative

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It took Yana Zavros 16 years to get diagnosed with a disorder called Cushing’s disease.

Sixteen years of a demoralizing condition that causes muscle weakness, mood changes, and weight gain, among other symptoms, because the patient’s adrenal glands produce too much of the stress hormone cortisol.

By the time Zavros received her diagnosis, she was an accomplished researcher at the University of Arizona who focused on gastric and pancreatic cancer. Cushing’s is rare in humans, and Zavros was frustrated by how long it took to diagnose and that the only treatments available to her weren’t even specific to her disease.

Then, she remembered that she was qualified to start a research program and do something about it.

“It was a turning point in how I viewed research and what we do as scientists,” she says. “I found my purpose.”

In fall 2024, Zavros joined UGA’s new School of Medicine as Research Center Director and Georgia Research Alliance Eminent Scholar in Molecular Medicine. Already, she is partnering with scholars on campus to find new answers for Cushing’s while continuing her cancer research.

Zavros believes the solution for better diagnosis and treatment for Cushing’s disease in humans is first understanding how to cure the disease in dogs through an approach to research called One Health. This concept looks for health solutions beyond the human by also considering animal and environmental health. In the last five years, UGA has invested in the One Health approach as part of a broader effort to bring interdisciplinary research teams together to tackle complex 21st century challenges.

While Cushing’s in humans is rare, that’s not true for canines. About 100,000 dogs are diagnosed with the hormonal disorder each year. Like their human counterparts, dogs with the disease suffer from weakness and weight gain. They also lose their fur, gain pot bellies, and can have a shorter life span.

The fact that both humans and man’s best friend share the disease (which, to be clear, is not contagious) might be the key to finding better treatments or perhaps even a cure for Cushing’s for both species.

“One Health is all about the intersections between humans, other animals, and our environment,” says Jon Mochel, director of UGA’s Precision One Health Initiative. “What can we learn about similarities in diseases, such as cancer or cardiarenal and metabolic diseases, that are shared by humans and other animals? What conditions lead to disease transmission between animals and humans? What role does the environment play in all of this? And how can we create better conditions to optimize human, veterinary, and environmental health?”

One Health has been practiced at UGA for over a decade, but the concept accelerated with the launch of UGA’s Precision One Health Initiative, supported by a hiring initiative in 2021. With UGA’s new School of Medicine, UGA is one of 13 universities in the nation with schools of veterinary medicine, human medicine, and agriculture on one campus. Add these to UGA’s other strengths, which range from pharmacy and engineering to public policy, law, and business, and UGA is positioned to make a unique impact.

“By working together, we can accelerate the discoveries of cures and then speed up the translation of discoveries to bedside practice,” said Jack S. Hu, senior vice president for academic affairs and provost at UGA’s One Health Symposium in November.

This interdisciplinary approach is being targeted at Cushing’s disease. UGA researchers are trying to understand, on a molecular level, the tumors that often cause the condition. And since the disease is much more common in dogs, researchers are collecting tumor biopsies from canine patients at UGA’s Veterinary Teaching Hospital.

“From those biopsies,” explains Mochel, who is also a co-investigator on the Cushing’s project, “we’ve created mini-tumors in dishes to screen for thousands of molecules in the cells. This process will allow us to determine which drugs could be safe and effective in fighting the disease.”

Researchers hope to customize optimal treatments for individual canine patients. If the trial treating dogs for Cushing’s is successful, then the next step is studying treatments in humans.

The research project could help with other applications as well. For example, Karin Allenspach, a clinician scientist and professor of pathology in the College of Veterinary Medicine, is a co-investigator on the Cushing’s research, helping create the mini-tumors called organoids, which serve as three-dimensional models of diseased tissues. These organoids can also be used in cancer research to help try out more drugs more quickly and pinpoint which ones should be tested in clinical trials. If this approach works, it means better treatments delivered to patients faster and cheaper.

UGA’s Precision One Health Initiative is just getting underway, but there’s already momentum toward making an impact.

“We have the resources, the talent, and the expertise to move this field forward,” Mochel says. “Our next step is to effectively translate these efforts from the lab to the patient’s bedside.”

–Aaron Hale, University of Georgia

From https://www.morningagclips.com/one-health/

đŸ–„ Cushing’s Slideshow

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Cushing’s Help message board member sherryc presented this PowerPoint at pioneer Pacific College. It took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.

She says that it took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.

Note that Sherry died on this date in 2020.  Here’s her bio.