Cushing’s Awareness Challenge

🦓 Day 6: Cushing’s Awareness Challenge

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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

🦓 Day 4, Cushing’s Awareness Challenge

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This is one of the suggestions from the Cushing’s Awareness Challenge post:

“Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!”

Our “Official mascot” is the zebra.

Our mascot
Our mascot

In med school, student doctors are told “When you hear hoofbeats, think horses, not zebras“.

According to Wikipedia: “Zebra is a medical slang term for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so “zebra” is the broader concept.

The term derives from the aphorism ‘When you hear hoofbeats behind you, don’t expect to see a zebra’, which was coined in a slightly modified form in the late 1940s by Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore.  Since horses are the most commonly encountered hoofed animal and zebras are very rare, logically you could confidently guess that the animal making the hoofbeats is probably a horse.

zebra-mug
A zebra cup my DH bought me 🙂

By 1960, the aphorism was widely known in medical circles.”

Why? Because those of us who DO have a rare disorder know from personal experience what it feels like to be dismissed by a doctor or in many cases, multiple doctors. Many physicians have completely lost the ability to even imagine that zebras may exist!  Cushing’s is too rare – you couldn’t possible have that.  Well… rare means some people get it.  Why couldn’t it be me?

Although one of my signature images has a zebra, many have rainbows or butterflies in them so I guess that I consider those my own personal mascots.

I posted this in 2010 in 40 Days of Thankfulness: Days Twenty-Two through Thirty

I have a special affinity for rainbows. To me, a rainbow is a sign that things are going to be ok.

Years ago, our little family was in Florida. I felt guilty about going because my dad was terminally ill with his second bout of colon cancer. I was worried about him and said a little prayer for him.

I was lying on the beach while DH and our son were in the ocean and I looked up and saw a rainbow. It was a perfectly clear, sunny afternoon. I even called the people out of the water, in case it was something I wanted to see that didn’t really exist. They saw it, too.

Where in the world did that rainbow come from, if it wasn’t a sign that everything would be ok?

Butterflies are something else again.  I like them because I would like to think that my life has evolved like a butterfly’s, from something ugly and unattractive to something a big easier on the eye.

My Cushie self was the caterpillar, post-op is more butterfly-ish, if not in looks, in good deeds.

From July, 2008

For as long as I can remember, I’ve loved butterflies for their beauty and what they stood for. I’ve always wanted to shed my cocoon and become someone else, someone beautiful, graceful.

One of my first memories as a kid was knocking on the back door of my house and when my mom answered, I’d pretend to somehow be an orphan, looking for some kind person to take me in. And I would try to be that different child, with new habits, in the hopes that my parents would somehow think better of me, love me more as this poor homeless kid than they did as their own.

The butterfly was trying to emerge but it never got too far. Somehow, I would slip into my original self and be a bother to my parents.

Hope springs eternal, though!

Adrenal Insufficiency Common After Adrenalectomy for Mild Autonomous Cortisol Secretion

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Key takeaways:

  • Of adults who underwent an adrenalectomy for mild autonomous cortisol secretion, 54.4% developed adrenal insufficiency.
  • More than half of those with adrenal insufficiency recovered within 6 months.

More than half of adults who underwent a unilateral adrenalectomy to treat mild autonomous cortisol secretion developed adrenal insufficiency, according to data published in The Journal of Clinical Endocrinology & Metabolism.

In a retrospective study of patients who underwent an adrenalectomy at five centers in the U.S., adrenal insufficiency was diagnosed in 54.4% of the study group after the procedure. Adrenal insufficiency was more likely to be diagnosed among younger adults, and 73% of diagnosed adults recovered in less than 1 year with glucocorticoid treatment.

More than half of adults who underwent an adrenalectomy for mild autonomous cortisol secretion developed adrenal insufficiency. Data were derived from Hamidi O, et al. J Clin Endocrinol Metab. 2025;doi:10.1210/clinem/dgaf515.

“The findings support the use of both postoperative cortisol testing — basal cortisol or cosyntropin stimulation test — to accurately diagnose adrenal insufficiency and guide glucocorticoid therapy,” Irina Bancos, MD, MSc, professor of medicine and adrenal lab principal investigator in the division of endocrinology, metabolism and nutrition at Mayo Clinic, and Oksana Hamidi, DO, MSCS, associate professor in the division of endocrinology at UT Southwestern Medical Center, told Healio. “This testing approach can help avoid unnecessary glucocorticoid exposure while ensuring patient safety.”

Irina Bancos

Researchers collected data from 281 adults aged 18 years or older diagnosed with mild autonomous cortisol secretion between January 2013 and August 2024 who underwent a unilateral adrenalectomy (80% women; median age, 57 years). Patients were deemed to have adrenal insufficiency if they received a clinical diagnosis based on symptoms and results from basal cortisol and cosyntropin stimulation testing, if they had a basal cortisol level of less than 10 ¾g/dL and a stimulated cortisol level on a cosyntropin stimulation test of less than 18 ¾g/dL. If there were discordant basal cortisol level and cosyntropin stimulation test results, the decision to initiate glucocorticoid therapy was made by the treating physician, taking into account the clinical context and individual patient factors.

Of the study group, 54.4% were diagnosed with postoperative adrenal insufficiency and treated with glucocorticoids. In multivariable analysis, every 10 years of older age reduced odds for an adrenal insufficiency diagnosis by 33% (OR = 0.67; 95% CI, 0.53-0.84).

Bancos and Hamidi said they were surprised at how strong the association was between age and adrenal insufficiency.

Oksana Hamidi

“The strong inverse relationship between age and risk of adrenal insufficiency observed in our study could suggest that younger patients may derive greater benefit from adrenalectomy for mild autonomous cortisol secretion,” Bancos and Hamidi said. “Younger patients also had higher dexamethasone suppression test cortisol and lower adrenocorticotropic hormone, reflective of more severe mild autonomous cortisol secretion.”

Of the participants, 60.1% had a low basal cortisol level of less than 10 ¾g/dL, and 57.6% had a reduced simulated cortisol level of less than 18 ¾g/dL. Basal and stimulated cortisol were concordant on adrenal insufficiency diagnoses for 78% of patients. Adults who had bilateral nodules were more likely to have discordant results between the cortisol tests than adults with a unilateral nodule (32% vs. 19%; P < .001).

Of adults diagnosed with adrenal insufficiency, 70.6% recovered during a median follow-up of 15.4 months. The proportion of diagnosed adults who recovered was 41% at 3 months, 60% at 6 months, 73% at 1 year and 84% at 18 months. Median recovery time was 3 months for adults with biochemically mild adrenal insufficiency, 4.7 months for those with moderate insufficiency and 14.5 months for adults with severe adrenal insufficiency (P = .02). Recovery times were similar when adrenal insufficiency severity was assessed through clinical severity score.

Bancos and Hamidi said the study findings emphasize the importance of conducting frequent postoperative testing for adrenal insufficiency, noting that regular testing can help avoid prolonged glucocorticoid exposure for patients.

“Early recovery is common,” Bancos and Hamidi said. “Delayed testing may lead to unnecessary glucocorticoid exposure and delay recovery.”

Additionally, Bancos and Hamidi said dexamethasone and other steroids should not be given to patients during an adrenalectomy or while administering anesthesia, as they may confound cortisol testing. They said endocrinologists should work with the anesthesia and surgical teams to optimize timing of postoperative cortisol testing.

For more information:

Irina Bancos, MD, MSc, can be reached at bancos.irina@mayo.edu.

Oksana Hamidi, DO, MSCS, can be reached at oksana.hamidi@utsouthwestern.edu.

From https://www.healio.com/news/endocrinology/20251001/adrenal-insufficiency-common-after-unilateral-adrenalectomy?utm_source=selligent&utm_medium=email&utm_campaign=20251004ENDO&utm_content=20251004ENDO

Basics: What is Cushing’s disease?

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MaryO’Note:  I found this article very simplistic.  What do you think?

This article is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Contact a qualified medical professional before engaging in any physical activity, or making any changes to your diet, medication or lifestyle.

Imagine the heart-pounding rush of adrenaline you’d get while bungee jumping or zip lining — that’s what Angela Yawn felt all the time before receiving her diagnosis.

In a span of six years, the 49-year-old gained 52 kg (115 lbs) and suffered from joint swelling, headaches, skin redness and a racing heart.

“I would put my hand on my chest because it made me feel like that’s what I needed to do to hold my heart in,” Yawn, who lives in Griffin, U.S., told Today. “I noticed it during the day, but at night when I was trying to lie down and sleep, it was worse because I could do nothing but hear it beat, feel it thump.”

Yawn recalled being the most frustrated with the weight gain, as she’d put on 1 kg (2 lbs) a day while only eating 600 calories. “I was going crazy,” she said.

After dozens of doctors couldn’t piece together her seemingly unrelated symptoms, Yawn sought out the help of an endocrinologist in February 2021.

Blood tests and an MRI confirmed that Yawn had a tumour in her pituitary gland — a small, pea-sized organ at the base of the brain — that caused the gland to release excess adrenocorticotropic hormones. As a result, she became inundated with cortisol, a steroid the body  releases  in response to danger or stress. This combination of factors led to her diagnosis — Cushing’s disease.

Read on to learn more about Cushing’s disease, signs and symptoms as well as how it can be prevented.

What is Cushing’s disease?

“Cushing’s disease is a rare but serious condition that is caused by a pituitary tumour,” a specialist from the University of California, Los Angeles (UCLA) pituitary team tells Yahoo Canada. “The gland releases excessive adrenocorticotropic hormones and cortisol into the blood over a long period of time. It’s a hormonal disorder that is sometimes called hypercortisolism, and you will need to see an endocrinologist or someone who specializes in hormonal-related diseases to confirm your diagnosis and to help you receive proper care.”

Cushing’s disease is not the same as Cushing’s syndrome, which refers to elevated levels of cortisol in the blood and is much more common than Cushing’s disease. Unlike the disease, Cushing’s syndrome can be  caused  by taking medications that have cortisol such as prednisone, asthma inhalers and joint steroid injections.

Who is at risk for Cushing’s disease?

Cushing’s disease is incredibly rare, resulting in only 10 to 15 new cases per million people in the United States each year, according to UCLA Health.

“It’s most commonly found in people between the ages of 20 and 50, and affects about three times more women than men,” the UCLA source, who asked not to be named, says. “However, you might be more at risk if you have high blood pressure, if you’re overweight or if you have type 2 diabetes.”

What are the signs and symptoms of Cushing’s disease?

Although each person may have a unique combination of symptoms, patients typically experience changes to their physical appearance, according to Mayo Clinic.

“It’s very common to see rapid weight gain, red cheeks and bruising of the skin,” the UCLA source says. “I’ve also seen patients with generalized fatigue, depression, high blood pressure, a rapid heartbeat and loss of vision.”

“The symptoms can seem random or unrelated, which is why it can be so hard to diagnose,” they add.

To establish if you have the disease, your doctor will conduct a physical exam and ask you about your symptoms and medical history. Generally, the first step in diagnosing Cushing’s disease is determining the state of excess cortisol in the blood. Afterwards, an MRI will determine if a pituitary tumour is visible.

If you have symptoms of Cushing’s disease, you should make an appointment to see a doctor or endocrinologist.

How is Cushing’s disease treated?

In the last decade, treatment options have changed thanks to several breakthroughs in pituitary science.

“Surgery to remove the tumour is normally the first treatment option. It’s minimally invasive, has a fairly high success rate and it’s the only long-term cure for Cushing’s disease at the moment,” explains the UCLA source.

If surgery isn’t an option or doesn’t solve the problem, medication and radiation therapy are other ways to treat the disease.

“No matter the stage of the disease at the time of diagnosis, treating it requires an experienced specialist or team of doctors familiar with pituitary tumours,” the UCLA source adds.

How can I prevent Cushing’s disease?

“There’s no tried and true method of preventing the condition,” the source explains. “But if you’re at risk or if you think you have the disease, I always recommend having a doctor monitor your cortisol levels on a regular basis.”

The UCLA source also recommends implementing healthy  lifestyle  changes that can help prevent high blood pressure. Examples include reducing stress, getting adequate sleep, exercising regularly and eating a healthy  diet  that’s rich in fruits, vegetables and whole grains.

Adapted from https://ca.news.yahoo.com/what-is-cushings-disease-experts-warn-rare-serious-condition-120015725.html

⁉️ Myth: “All Cushing’s patients have the exact same symptoms

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Myth: “All Cushing’s patients have the exact same symptoms and the level of illness is the same for everyone. If you do not have ALL of the classic symptoms of Cushing’s, then you must NOT have Cushing’s Syndrome/Disease!”

myth-busted

Fact: Everyone does NOT have the exact same symptoms. Not all Cushing’s patients are exactly the same. This is one mistake that non experts tend to make in terms of categorizing patients by whether they meet the exact same classic symptoms or not. Experts have come to learn that each patient should be treated individually. Though there are symptoms that are more prominent in the Cushing’s population, not every patient has to meet every single symptom in order to meet criteria for Cushing’s.

For instance, not all Cushing’s patients become overweight. Everyone does not gain the same amount of weight. There are various theories as to why. One issue is that different patients are diagnosed at different stages of the illness. We know that patients tend not to be diagnosed at the onset of the illness because of doctors’ misconception that Cushing’s patients must be extremely obese to have the disease. So, patients who have not gained as much weight may not be listened to until after the weight has gotten out of control. However, there ARE patients who are diagnosed early enough where there has not been a tremendous amount of weight gain.

I (Karen Ternier Thames), for one, started trying to get help after gaining my first 30 pounds because I KNEW that something was wrong with my body. Had I received an appropriate diagnosis, I probably would not have gained the 150 pounds I ended up gaining in 5 years.

Regardless of the reason, it is a myth that all Cushing’s patients gain the same amount of weight. The following are other additional reasons that an endocrinologist gave me for supposedly not meeting the criteria for Cushing’s when I was misdiagnosed: “1. Your stretch marks are not purple enough”, 2. “Your buffalo hump is not large enough”, 3. “You are not THAT fat!”, 4. “Cushing’s patients do NOT have children”, and 5. ” your face does not look like a classic moon face”. These are some of the reasons why, 2 years earlier, this same doctor dismissed apparently high cortisol levels, and didn’t even tell me, leading to several more years of suffering!

So, not all Cushing’s patients are obese, not all Cushing’s patients gain the same weight at the same rate, not all Cushing’s patients have the same size buffalo hump or the same round moon face. There are variations in these symptoms. IF you are experiencing extreme changes in your body regardless of diet and exercise and its not influenced by external factors, then it is time to speak up!

It is important to raise concern with your doctor if you do have ANY Cushing’s symptoms. Please do not be inhibited if you do not show every single symptom!

⁉️ Cushing’s Myths and Facts

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Dr. Karen Thames shared these on her Facebook Page, Empowering People with Invisible Chronic Illness – The EPIC Foundation

She has graciously given me permission to share them here and on the Cushing’s Help message boards.

Find these pages here, under the Cushing’s Myths and Facts category.

Thanks, Karen!

ℹ️ Basics: Cushing’s Syndrome Overview

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Cushing’s syndrome is a rare disorder that occurs when the body is exposed to too much cortisol. Cortisol is produced by the body and is also used in corticosteroid drugs. Cushing’s syndrome can occur either because cortisol is being overproduced by the body or from the use of drugs that contain cortisol (like  prednisone ).

Cortisol is the body’s main stress hormone. Cortisol is secreted by the adrenal glands in response to the secretion of adrenocorticotropic hormone (ACTH) by the pituitary. One form of Cushing’s syndrome may be caused by an oversecretion of ACTH by the pituitary leading to an excess of cortisol.

Cortisol has several functions, including the regulation of inflammation and controlling how the body uses carbohydrates, fats, and proteins. Corticosteroids such as prednisone, which are often used to treat inflammatory conditions, mimic the effects of cortisol.

Stay tuned for more basic info…

🎬 Video: How the Body Works: The Adrenal Cortex and Medulla

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The adrenal glands sitting above the kidneys are richly supplied with blood and with sympathetic nerve endings. Block sections show the blood supply and cellular arrangement of the adrenals.

Two different regions are distinguishable–the cortex, controlled by the pituitary hormone ACTH, produces hormones which maintain body chemistry, and the medulla, which secretes adrenaline and noradrenaline to increase body activity.

 

ℹ️ 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/

🎥 Pituitary Tumors and Treatments

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Pituitary tumors start in the pituitary gland. They’re usually benign (not cancerous) and rarely spread to other parts of the body.

Dr. Borghei-Razavi discusses pituitary tumors and treatments through minimally invasive surgical approaches offered at Cleveland Clinic Florida.