Myth: Cushing’s Syndrome/Disease can be healed or cured

MaryO Cushing's Awareness Challenge, Cushing's Myths and Facts , , , , , , , , , , , ,

Myth: Cushing’s Syndrome/Disease can be healed or cured through change in diet or exercise.

myth-busted

Fact: NO! Caloric intake or lack of exercise has NO impact on weight gain and/ or loss in persons with Cushing’s.

Saying that someone “cheated” on their diet may seem reasonable to some as a reason for weight gain but I assure you that a candy bar or a piece of pie does not make a person with Cushing’s gain weight or get sick. Excess cortisol is the reason for Cushing’s symptoms. Treating the disease is the only way to alleviate symptoms.

The first line of treatment with the highest rate of remission is currently surgery to remove the tumor (s) from the pituitary, adrenal gland, or ectopic source.

🌈 It’s Harvey’s Birthday!

MaryO Cushing's Awareness Challenge ,

3117422_yjbm_84_2_91_g10

Harvey Cushing (April 8, 1869 – October 7, 1939) is considered to be the father of modern neurological surgery. In the early part of the 20th century, he developed basic techniques and instruments for operating on the brain and, as a result, founded the discipline as a distinct surgical speciality.

Cushing’s name is commonly associated with his most famous discovery, Cushing’s disease. In 1912 he reported in a study an endocrinological syndrome caused by a malfunction of the pituitary gland which he termed “polyglandular syndrome.” He published his findings in 1932 as “The Basophil Adenomas of the Pituitary Body and Their Clinical Manifestations: pituitary Basophilism”.

Before Cushing began his career, brain tumours were considered to be inoperable, and the mortality rate for any surgical procedure which involved opening the skull was around 90%. Early in his career, Cushing dramatically reduced the mortality rate for neurosurgery to less than 10%, and by the time of his retirement in 1937, he had successfully removed more than 2,000 tumours.

 

🦓 Day 8: Cushing’s Awareness Challenge

MaryO Cushing's Awareness Challenge , , , , , ,

It’s Here!

Dr. Cushing was born in Cleveland Ohio. The fourth generation in his family to become a physician, he showed great promise at Harvard Medical School and in his residency at Johns Hopkins Hospital (1896 to 1900), where he learned cerebral surgery under William S. Halsted

After studying a year in Europe, he introduced the blood pressure sphygmomanometer to the U.S.A. He began a surgical practice in Baltimore while teaching at Johns Hopkins Hospital (1901 to 1911), and gained a national reputation for operations such as the removal of brain tumors. From 1912 until 1932 he was a professor of surgery at Harvard Medical School and surgeon in chief at Peter Bent Brigham Hospital in Boston, with time off during World War I to perform surgery for the U.S. forces in France; out of this experience came his major paper on wartime brain injuries (1918). In addition to his pioneering work in performing and teaching brain surgery, he was the reigning expert on the pituitary gland since his 1912 publication on the subject; later he discovered the condition of the pituitary now known as “Cushing’s disease“.

Read more about Dr. Cushing

Today, April 8th, is Cushing’s Awareness Day. Please wear your Cushing’s ribbons, t-shirts, awareness bracelets or Cushing’s colors (blue and yellow) and hand out Robin’s wonderful Awareness Cards to get a discussion going with anyone who will listen.

And don’t just raise awareness on April 8.  Any day is a good day to raise awareness.

harvey-book

I found this biography fascinating!

I found Dr. Cushing’s life to be most interesting. I had previously known of him mainly because his name is associated with a disease I had – Cushing’s. This book doesn’t talk nearly enough about how he came to discover the causes of Cushing’s disease, but I found it to be a valuable resource, anyway.
I was so surprised to learn of all the “firsts” Dr. Cushing brought to medicine and the improvements that came about because of him. Dr. Cushing introduced the blood pressure sphygmomanometer to America, and was a pioneer in the use of X-rays.

He even won a Pulitzer Prize. Not for medicine, but for writing the biography of another Doctor (Sir William Osler).

Before his day, nearly all brain tumor patients died. He was able to get the number down to only 5%, unheard of in the early 1900s.

This is a very good book to read if you want to learn more about this most interesting, influential and innovative brain surgeon.

What Would Harvey Say?

More than 80 years ago renowned neurosurgeon, Dr. Harvey Cushing, discovered a tumor on the pituitary gland as the cause of a serious, hormone disorder that leads to dramatic physical changes in the body in addition to life-threatening health concerns. The discovery was so profound it came to be known as Cushing’s disease. While much has been learned about Cushing’s disease since the 1930s, awareness of this rare pituitary condition is still low and people often struggle for years before finding the right diagnosis.

Read on to meet the man behind the discovery and get his perspective on the present state of Cushing’s disease.

* What would Harvey Cushing say about the time it takes for people with Cushing’s disease to receive an accurate diagnosis?

Cushing’s disease still takes too long to diagnose!

Despite advances in modern technology, the time to diagnosis for a person with Cushing’s disease is on average six years. This is partly due to the fact that symptoms, which may include facial rounding, thin skin and easy bruising, excess body and facial hair and central obesity, can be easily mistaken for other conditions. Further awareness of the disease is needed as early diagnosis has the potential to lead to a more favorable outcome for people with the condition.

* What would Harvey Cushing say about the advances made in how the disease is diagnosed?

Significant progress has been made as several options are now available for physicians to use in diagnosing Cushing’s disease.

In addition to routine blood work and urine testing, health care professionals are now also able to test for biochemical markers – molecules that are found in certain parts of the body including blood and urine and can help to identify the presence of a disease or condition.

* What would Harvey Cushing say about disease management for those with Cushing’s disease today?

Patients now have choices but more research is still needed.

There are a variety of disease management options for those living with Cushing’s disease today. The first line and most common management approach for Cushing’s disease is the surgical removal of the tumor. However, there are other management options, such as medication and radiation that may be considered for patients when surgery is not appropriate or effective.

* What would Harvey Cushing say about the importance of ongoing monitoring in patients with Cushing’s disease?

Routine check-ups and ongoing monitoring are key to successfully managing Cushing’s disease.

The same tests used in diagnosing Cushing’s disease, along with imaging tests and clinical suspicion, are used to assess patients’ hormone levels and monitor for signs and symptoms of a relapse. Unfortunately, more than a third of patients experience a relapse in the condition so even patients who have been surgically treated require careful long-term follow up.

* What would Harvey Cushing say about Cushing’s disease patient care?

Cushing’s disease is complex and the best approach for patients is a multidisciplinary team of health care professionals working together guiding patient care.

Whereas years ago patients may have only worked with a neurosurgeon, today patients are typically treated by a variety of health care professionals including endocrinologists, neurologists, radiologists, mental health professionals and nurses. We are much more aware of the psychosocial impact of Cushing’s disease and patients now have access to mental health professionals, literature, patient advocacy groups and support groups to help them manage the emotional aspects of the disease.

From http://www.jsonline.com/sponsoredarticles/health-wellness/what-would-harvey-cushing-say-about-cushings-disease-today8087390508-253383751.html

 

 

🍰 Harvey Cushing: The father of modern neurosurgery

MaryO Cushing's Awareness Challenge, Cushing's Awareness Challenge ,

3117422_yjbm_84_2_91_g10

 

Harvey Cushing (1869-1939) is considered to be the father of modern neurological surgery. In the early part of the 20th century, he developed basic techniques and instruments for operating on the brain and, as a result, founded the discipline as a distinct surgical speciality. Before Cushing began his career, brain tumours were considered to be inoperable, and the mortality rate for any surgical procedure which involved opening the skull was around 90%. Early in his career, Cushing dramatically reduced the mortality rate for neurosurgery to less than 10%, and by the time of his retirement in 1937, he had successfully removed more than 2,000 tumours.

🦓 Day 7: Cushing’s Awareness Challenge

MaryO Cushing's Awareness Challenge , , , , , , , , , , , ,

 

Uh, Oh – I’m nearly a day late (and a dollar short?)…and I’m not yet sure what today’s topic will be.  I seem swamped by everything lately, waking up tired, napping, going to bed tired, waking up in the middle of the night, starting all over again…and my DH was diagnosed with cancer which makes everything more hectic and tiring.

It’s been like this since I was being diagnosed with Cushing’s in the mid-1980’s.  You’d think things would be improved in the last 38 years.  But, no.

My mind wants things to have improved, so I’ve taken on more challenges, and my Mom and DH have provided some for me (see one of my other blogs, MaryOMedical).

Thank goodness, I have only part-time jobs (5 0f them!), that I can mostly do from home.  I don’t know how anyone post-Cushing’s could manage a full-time job!

I can see this post morphing into the topic “My Dream Day“…

I’d wake up refreshed and really awake at about 7:00AM and take the dog out for a brisk run.

Get home about 8:00AM and start on my website work.

Later in the morning, I’d get some bills paid – and there would be enough money to do so!

After lunch, out with the dog again, then practice the piano some, read a bit, finish up the website work, teach a few piano students, work on my church jobs, then dinner.

After dinner, check email, out with the dog, maybe handbell, balalaika or choir practice, a bit of TV, then bed about 10PM

Nothing fancy but NO NAPS.  Work would be getting done, time for hobbies, 3 healthy meals.

Just a normal life that so many take for granted. Or, do they?

 

me-tired

Behind High Blood Pressure and Anxiety, a Hidden Diagnosis: The Overlooked Rise of Adrenal Disorders

MaryO Helpful Doctors , , , , , , , , , ,

April marks Adrenal Awareness Month, a national initiative focused on a group of hormonal disorders that are frequently overlooked, often misdiagnosed, and in some cases life-threatening if left untreated. Many adrenal disorders present with symptoms that mimic common conditions—such as high blood pressure, anxiety, weight gain, or fatigue—leading patients to go undiagnosed for years.

Adrenal Awareness Month expands its focus to spotlight a broader range of adrenal disorders, including Cushing’s syndrome, pheochromocytoma, Conn’s syndrome, and adrenal cancer. Each condition will be featured throughout the month, offering targeted education, resources, and increased visibility for these complex and often overlooked diseases.

Cushing’s syndrome results from prolonged exposure to elevated cortisol levels, often caused by adrenal or pituitary tumors. Symptoms can include rapid weight gain, particularly in the face and abdomen, thinning skin, muscle weakness, and high blood pressure—features that frequently overlap with more common conditions, delaying diagnosis. Pheochromocytoma is a rare but potentially life-threatening tumor of the adrenal glands that causes excessive release of catecholamines, including adrenaline. This can lead to sudden episodes of severe high blood pressure, headaches, rapid heart rate, sweating, and anxiety or panic-like symptoms. Because these episodes can occur unpredictably, diagnosis is often challenging. When properly identified, however, pheochromocytoma is highly treatable, particularly with specialized surgical care. Conn’s syndrome (primary hyperaldosteronism) is a leading but often unrecognized cause of secondary hypertension. Studies suggest that up to 10% of patients with high blood pressure may have an underlying hormonal cause such as Conn’s syndrome—yet many remain undiagnosed. The condition occurs when an adrenal tumor produces excess aldosterone, causing the body to retain sodium and lose potassium. This imbalance can lead to persistent high blood pressure, fatigue, muscle weakness, and increased cardiovascular risk. Because these symptoms often overlap with more common conditions, Conn’s syndrome is frequently overlooked or misdiagnosed.

“Adrenal disorders often present with symptoms that overlap with more common conditions, which is why they can go unrecognized for years,” said Tobias Carling, MD, PhD, FACS. “The challenge is that these are not just complex conditions—they can be serious and even life-threatening if missed. The good news is that many are highly treatable, and in some cases curable, when diagnosed early.” Early diagnosis and expert surgical treatment can be life-changing—and in many cases, curative.

Dr. Carling and his team operate at the Hospital for Endocrine Surgery, home to the highest-volume endocrine surgery program in the world.Adrenal conditions are frequently overlooked, leaving patients to manage symptoms such as hypertension, fatigue, anxiety, or metabolic changes without identifying the underlying cause. Increasing awareness and encouraging appropriate screening are critical steps toward improving diagnosis and treatment outcomes.

Individuals experiencing persistent high blood pressure, unexplained weight changes, episodic anxiety, or abnormal potassium levels are encouraged to speak with their physician about further evaluation. Direct-to-consumer testing options, including specialized adrenal panels, are also available through providers such as Any Lab Test Now.

To further elevate awareness and bring a human perspective to these conditions, former patients of the Hospital for Endocrine Surgery are invited to share their personal stories. By visiting:
https://hospital-for-endocrine-surgery.boast.io/form/conns-awareness-day
patients can contribute their experiences—helping others better understand symptoms, treatment journeys, and life-changing outcomes associated with adrenal disorders.

“It is our hope to amplify the voices of those who have experienced these conditions firsthand,” Dr. Carling added. “By sharing these stories, we can help others recognize symptoms earlier, seek appropriate care, and ultimately improve outcomes for patients worldwide.”

Throughout April, patients, providers, and advocates are encouraged to participate, share information, and help bring long-overdue visibility to adrenal health.

About the Carling Adrenal Center
Founded by Dr. Tobias Carling, a global leader in adrenal gland surgery, the Carling Adrenal Center is an international destination for the surgical treatment of adrenal tumors. After nearly 20 years at Yale University—including seven years as Chief of Endocrine Surgery—Dr. Carling founded the center in 2020. Today, it performs more adrenal operations than any other hospital in the world. Learn more at www.adrenal.com or call (813) 972-0000.

About Hospital for Endocrine Surgery
The Hospital for Endocrine Surgery, a campus of HCA Florida South Tampa Hospital, specializes in the diagnosis and surgical treatment of thyroid, parathyroid, and adrenal tumors. The hospital is dedicated to compassionate, patient-centered care and is recognized as the nation’s highest-volume center for endocrine tumor treatment. Learn more at www.hospitalforendocrinesurgery.com.

Information contained on this page is provided by an independent third-party content provider. XPRMedia and this Site make no warranties or representations in connection therewith. If you are affiliated with this page and would like it removed please contact pressreleases@xpr.media

From https://www.registerguard.com/press-release/story/51335/behind-high-blood-pressure-and-anxiety-a-hidden-diagnosis-the-overlooked-rise-of-adrenal-disorders/

🦓 Day 6: Cushing’s Awareness Challenge

MaryO Cushing's Awareness Challenge , , , , , , , , , , , , , , , , , , ,

 

Way back when we first got married, my husband thought we might have a big family with a lot of kids.  He was from a family of 6 siblings, so that’s what he was accustomed to.  I am an only child so I wasn’t sure about having so many.

I needn’t have worried.

In January, 1974 I had a miscarriage.  I was devastated. My father revealed that my mother had also had a miscarriage.  I had no idea.

At some point after this I tried fertility drugs.  Clomid and another drug.  One or both drugs made me very angry/depressed/bitchy (one dwarf I left off the image)  Little did I know that these meds were a waste of time.

Eventually,  I did get pregnant and our wonderful son, Michael was born.  It wasn’t until he was seven that I was finally, actually diagnosed with Cushing’s.

When I had my early Cushing’s symptoms, I thought I was pregnant again but it was not to be.

I’ll never forget the autumn when he was in second grade.  He was leaving for school and I said goodbye to him.  I knew I was going into NIH that day for at least 6 weeks and my future was very iffy.  The night before, I had signed my will – just in case.  He just turned and headed off with his friends…and I felt a little betrayed.

Michael wrote this paper on Cushing’s when he was in the 7th grade. From the quality of the pages, he typed this on typing paper – no computers yet!

Click on each page to enlarge.

When Michael started having headache issues in middle school, I had him tested for Cushing’s.  I had no idea yet if it could be familial but I wasn’t taking any chances.  It turned out that my father had also had some unnamed endocrine issues.  Hmmm…

I survived my time and surgery at NIH and Michael grew up to be a wonderful young man, if an only child.  🙂

After I survived kidney cancer (Day Twelve, Cushing’s Awareness Challenge 2015) Michael and I went zip-lining – a goal of mine after surviving that surgery.  This photo was taken in a treetop restaurant in Belize.

For the mathematically inclined, this is his blog.  Xor’s Hammer.  I understand none of it.  He also has a page of Math and Music, which I also don’t understand.

I know it doesn’t fit into a Cushing’s awareness post but just because I’m a very proud mama – Michael got a PhD in math from Cornell and his thesis was Using Tree Automata to Investigate Intuitionistic Propositional Logic

These days, he’s working on Wall Street, running a Math Meetup, still playing the piano…

proud-mom

🦓 From a Past Blogging Challenge: Cushing’s Awareness Challenge ~ Danielle, Day 5

MaryO Cushing's Awareness Challenge, Other Bloggers

From Danielle’s Cushing’s Awareness Challenge Blog

Social media dominates most people’s lives these days. You see what everyone you know is up to, but the problem is, most people only post about the highlights of their lives.

You don’t get to see the low points, the every day struggles. You don’t see what keeps them up at night with worry.

Read more at http://www.lifewithcushings.com/2017/04/cushings-awareness-challenge-day-5.html

🦓 Day 5: Cushing’s Awareness Challenge

MaryO Cushing's Awareness Challenge , , , , , , , ,

 

The above is the official Cushing’s path to a diagnosis but here’s how it seems to be in real life:

Egads!  I remember the naive, simple days when I thought I’d give them a tube or two of blood and they’d tell me I had Cushing’s for sure.

Who knew that diagnosing Cushing’s would be years of testing, weeks of collecting every drop of urine, countless blood tests, many CT and MRI scans…

Then going to NIH, repeating all the above over 6 weeks inpatient plus an IPSS test, an apheresis (this was experimental at NIH) and speciality blood tests…

The path to a Cushing’s diagnosis is a long and arduous one but you have to stick with it if you believe you have this Syndrome.

 

 

🦓 From a Past Blogging Challenge: Cushing’s Awareness Challenge ~ Danielle, Day 4

MaryO Cushing's Awareness Challenge, Other Bloggers

From Danielle’s Blog:  http://www.lifewithcushings.com/2017/04/cushings-awareness-challenge-day-4.html

I have often said, I wish I had cancer instead. Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?

It is another common thread tying people with chronic illness together. If my disease was cancer, everyone would know what it was. I wouldn’t be questioned by my boss when I called in sick. My friends and family would be more supportive. My doctors wouldn’t question my symptoms.

Maybe my life would be easier.

Read the rest of the post at http://www.lifewithcushings.com/2017/04/cushings-awareness-challenge-day-4.html