🦓 Day 15, Cushing’s Awareness Challenge

Today’s Cushing’s Awareness Challenge post is about kidney cancer (renal cell carcinoma). You might wonder how in the world this is related to Cushing’s. I think it is, either directly or indirectly.

I alluded to this a couple days ago when I said:

I finally started the Growth Hormone December 7, 2004.
Was the hassle and 3 year wait worth it?
Stay tuned for tomorrow, April 15 when all will be revealed.

So, as I said, I started Growth Hormone for my panhypopituitarism on December 7, 2004.  I took it for a while but never really felt any better, no more energy, no weight loss.  Sigh.

April 14 2006 I went back to the endo and found out that the arginine test that was done in 2004 was done incorrectly. The directions were written unclearly and the test run incorrectly, not just for me but for everyone who had this test done there for a couple years. My endo discovered this when he was writing up a research paper and went to the lab to check on something.

So, I went off GH again for 2 weeks, then was retested. The “good news” was that the arginine test is only 90 minutes now instead of 3 hours.

Wow, what a nightmare my arginine retest started! I went back for that Thursday, April 27, 2006. Although the test was shorter, I got back to my hotel and just slept and slept. I was so glad that I hadn’t decided to go right home after the test.

Friday I felt fine and drove back home, no problem. I picked up my husband for a biopsy he was having and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps.

There were signs all over that no cellphones were allowed so I sat in the restroom (I had to be in there a lot, anyway!) and I left messages for several of my doctors on what I should do. It was Friday afternoon and most of them were gone 🙁  I finally decided to see my PCP after I got my husband home.

When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok – Tom couldn’t drive because of the anaesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom’s doctor followed us to the ER and instantly became my new doctor.

They took me in pretty fast since I was in so much pain, and had the blood in my urine. At first, they thought it was a kidney stone. After a CT scan, my new doctor said that, yes, I had a kidney stone but it wasn’t the worst of my problems, that I had kidney cancer. Wow, what a surprise that was! I was admitted to that hospital, had more CT scans, MRIs, bone scans, they looked everywhere.

My new “instant doctor” felt that he wasn’t up to the challenge of my surgery, so he called in someone else.  My next new “instant doctor” came to see me in the ER in the middle of the night.  He patted my hand, like a loving grandfather might and said “At least you won’t have to do chemotherapy”.  And I felt so reassured.

It wasn’t until later, much after my surgery, that I found out that there was no chemo yet that worked for my cancer.  I was so thankful for the way he told me.  I would have really freaked out if he’d said that nothing they had was strong enough!

My open radical nephrectomy was May 9, 2006 in another hospital from the one where the initial diagnosis was made. My surgeon felt that he needed a specialist from that hospital because he believed preop that my tumor had invaded into the vena cava because of its appearance on the various scans. Luckily, that was not the case.

My entire left kidney and the encapsulated cancer (10 pounds worth!) were removed, along with my left adrenal gland and some lymph nodes. Although the cancer (renal cell carcinoma AKA RCC) was very close to hemorrhaging, the surgeon believed he got it all.

He said I was so lucky. If the surgery had been delayed any longer, the outcome would have been much different. I will be repeating the CT scans every 3 months, just to be sure that there is no cancer hiding anywhere. As it turns out, I can never say I’m cured, just NED (no evidence of disease). This thing can recur at any time, anywhere in my body.

I credit the arginine re-test with somehow aggravating my kidneys and revealing this cancer. Before the test, I had no clue that there was any problem. The arginine test showed that my IGF is still low but due to the kidney cancer I couldn’t take my growth hormone for another 5 years – so the test was useless anyway, except to hasten this newest diagnosis.

So… either Growth Hormone helped my cancer grow or testing for it revealed a cancer I might not have learned about until later.

My five years are up now.  When I was 10 years free of this cancer my kidney surgeon *thought* it would be ok to try the growth hormone again.  I was a little leery about this, especially where I didn’t notice that much improvement.

What to do?

BTW, I decided to…

Myth: “All types of Cushing’s are the same”

Myth: “All types of Cushing’s are the same”

myth-busted

Fact: In the words of our dear friend and advocate, Robin Ess, “There are many genetic varieties with quite a few discovered in the past couple of years. Plus, there are several types such as adrenal, ectopic, and pituitary. And so on”….Amazingly, some doctors do not realize that there are different varieties of Cushing’s and that the symptoms can come from a different source.

For instance, a doctor might rule out a pituitary tumor and completely dismiss the patient, even with biochemical evidence of Cushing’s. That doctor, instead of dismissing the patient, should thoroughly look for other potential sources, such as an adrenal tumor, or yet another source. Did you know that tumors on one’s lungs can even cause Cushing’s? Most people don’t know that.

For more information about the different types of Cushing’s, please read: http://www.mayoclinic.org/diseases-conditions/cushing-syndrome/basics/causes/con-20032115

Another great article regarding ectopic Cushing’s can be found here: http://www.nejm.org/doi/full/10.1056/NEJM199809243391304#.VH-80v5f2s8.facebook

MaryONote: Folks might be interested in listening to this podcast episode with Jayne, a Cushing’s patient who had pituitary surgeries and a bilateral adrenalectomy before finding the true source of her ectopic Cushing’s – lung tumors.

http://www.blogtalkradio.com/cushingshelp/2008/01/31/tentative-date-an-interview-with-jayne-cyclical-cushings-patient

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

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.

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

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/

ℹ️ Basics: What is Cortisol?

Cortisol is a hormone which produced by the adrenal gland (cortex) to control blood sugar. The production of cortisol is triggered by the pituitary hormone ACTH. Cortisol is a glucocorticoid which stimulates an increase in blood glucose. Cortisol will also stimulate the release of amino acids from muscle tissue and fatty acids from adipose tissue. The amino acids are then converted in the liver to glucose (for use by the brain). The fatty acids can be used by skeletal muscles for energy (rather than glucose) thereby freeing up glucose for selective utilization by the brain. Cortisol levels are often measured to evaluate the function of the pituitary or adrenal glands. Some of the cortisol is metabolized by the liver to produce 17 hydroxycorticosteroids, which is then excreted in the urine.

The primary stress hormone. Cortisol is the major natural GLUCOCORTICOID (GC) in humans.

Synthetic cortisol, also known as hydrocortisone, is used as a drug mainly to fight allergies and inflammation.

Physiology
The amount of cortisol present in the serum undergoes diurnal variation, with the highest levels present in the early morning, and lower levels in the evening, several hours after the onset of sleep. Information about the light/dark cycle is transmitted from the retina to the paired suprachiasmatic nuclei in the hypothalamus. Changed patterns of the serum cortisol levels have been observed in connection with abnormal ACTH levels, clinical depression, psychological stress, and such physiological stressors as hypoglycemia, illness, fever, trauma, surgery, fear, pain, physical exertion or extremes of temperature. There is also significant individual variation, although a given person tends to have consistent rhythms.

Cortisol also inhibits the secretion of corticotropin releasing hormone (CRH), resulting in feedback inhibition of ACTH secretion. Some researchers believe that this normal feedback system may break down when animals are exposed to chronic stress.

In normal release, cortisol has widespread actions which help restore homeostasis after stress. It acts as a physiological antagonist to insulin by promoting gluconeogenesis, breakdown of lipids, and proteins, and mobilization of extrahepatic amino acids and ketone bodies. This leads to increased blood glucose concentrations, resulting in increased glycogen formation in the liver (Freeman, 2002). It also increases blood pressure. In addition, immune and inflammatory cells have their responses to stress attenuated by cortisol, and the hormone thus lowers the activity of the immune system. Bone formation is also lowered by cortisol.

These normal endogenous functions are the basis for the physiological consequences of chronic stress – prolonged cortisol secretion causes muscle wastage, hyperglycemia, and suppresses immune / inflammatory responses. The same consequences arise from long-term use of glucocorticoid drugs.

Also, long-term exposure to cortisol results in damage to cells in the hippocampus. This damage results in impaired learning. However, short-term exposure of cortisol helps to create memories; this is the proposed mechanism for storage of flash bulb memories.

Pharmacology
As an oral or injectable drug, cortisol is also known as hydrocortisone. It is used as an immunosuppressive drug, given by injection in the treatment of severe allergic reactions such as anaphylaxis and angioedema, in place of prednisolone in patients who need steroid treatment but cannot take oral medication, and peri-operatively in patients on long-term steroid treatment to prevent an Addisonian crisis.

It is given by topical application for its anti-inflammatory effect in allergic rashes, eczema and certain other inflammatory conditions. It may also be injected into inflamed joints resulting from diseases such as gout.

Compared to prednisolone, hydrocortisone is about 1/4th the strength. Dexamethasone is about 40 times stronger than hydrocortisone. For side effects, see corticosteroid and prednisolone.

A certain amount of cortisol is necessary for life. Without cortisol even a small amount of stress will kill you. Addison’s disease is a disease which causes low cortisol levels, and which is treated by cortisol replacement therapy.

Cortisol…

  • helps maintain blood pressure and cardiovascular function;
  • helps slow the immune system’s inflammatory response;
  • helps balance the effects of insulin in breaking down sugar for energy; and
  • helps regulate the metabolism of proteins, carbohydrates, and fats.

 

Helpful Doctors: Dr. Ricardo Correa

Ricardo Correa, MD, MEd, has been recognized as a 2023 Castle Connolly Top Doctor — the first time he has received the prestigious Top Doctor honor.

CLEVELAND, OH, October 19, 2023 /24-7PressRelease/ — Ricardo Correa, MD, MEd, has been recognized as a 2023 Castle Connolly Top Doctor — the first time he has received the prestigious Top Doctor honor. Only about 7 percent of the nation’s licensed physicians are selected annually as Castle Connolly Top Doctors in their regions for their specialties.

Dr. Correa is an endocrinologist, Endocrinology Fellowship program director, and Health Equity and Inclusive director with the Cleveland Clinic Endocrinology & Metabolism Institute.

He has special expertise in transgender medicine; neuroendocrinology; and caring for adults with adrenal disorders, such as Cushing’s syndrome, Addison’s disease, primary hyperaldosteronism, neuroendocrine tumors, and rare endocrine conditions.

Dr. Correa is certified by the American Board of Internal Medicine, with subspecialty certification in endocrinology, diabetes, and metabolism as well as nutrition. In addition, he is board certified in medical quality.

Dr. Correa is a Fellow of the American College of Physicians, the American Association of Clinical Endocrinology, the Academy for Physicians in Clinical Research, and the American College of Medical Quality.

In addition to his clinical activities, Dr. Correa serves as a clinical professor of medicine, director for longitudinal didactics, and director for mentoring and belonging — among many other roles — for the Lerner College of Medicine and the School of Medicine at Case Western Reserve University. He’s also a volunteer researcher at the Phoenix VA Medical Center and director of the Health Equity Fellowship at Creighton School of Medicine in Phoenix.

He leads Cleveland Clinic’s Endocrine Health Equity Initiatives and focuses on decreasing disparities among underrepresented minorities with diabetes, obesity, and rare endocrine conditions and health care.

Dr. Correa is a major and battalion surgeon with the U.S. Army Physician Reserve, 492nd CA Battalion.

Dr. Correa is involved in many local and national organizations and efforts related to caring for underserved communities and gender-diverse communities and promoting diversity, equity, and inclusion and volunteerism.

He speaks Spanish and English.

Dr. Correa earned his medical degree at the Universidad De Panama Faculty of Medicine in Panama City. He completed a three-year internal medicine residency at Miami’s Jackson Memorial Hospital, followed by a three-year fellowship in endocrinology, metabolism, and diabetes at the National Institutes of Health, where he focused on neuroendocrine disorders. He further trained with a one-year nutrition fellowship. He has completed multiple leadership fellowships including the Presidential Leadership Scholar Fellowship, NHMA Leadership Fellowship, and Climate Change and Health Equity Fellowship, among others.

He also holds a master’s degree (EdD) in education from the Universidad De Panama. He has published more than 100 articles in highly quality peer-reviewed journals and he is very involved in research with several grants and awards that he has earned.

Dr. Correa maintains active profiles on Instagram, Facebook, X (Twitter), and LinkedIn – offering valuable insights and updates to his professional network.

Top Doctors are nominated by peer physicians and selected by the physician-led Castle Connolly research team.

About Castle Connolly
Castle Connolly publishes its Top Doctors list at castleconnolly.com and in a variety of print and online partner publications. Nominations are open to all board-certified MDs, DOs, and DPMs. The Castle Connolly team chooses honorees based on nominee criteria that includes their medical education, training, hospital appointments, and disciplinary histories.

Doctors do not and cannot pay to be selected as a Castle Connolly Top Doctor.

Basics: The Role of Endocrinology in Managing Polycystic Ovary Syndrome and Diabetes

Introduction to Endocrinology

Endocrinology is a medical specialty that focuses on the diagnosis and treatment of diseases related to hormones. Endocrinologists are experts in managing and treating diseases related to the endocrine system, which includes the thyroid, pituitary, adrenal glands, and pancreas. Endocrinologists are trained to diagnose and treat conditions such as diabetes, thyroid disorders, pituitary disorders, and other conditions related to hormones. Endocrinologists also specialize in reproductive health and fertility issues, including PCOS.

Endocrinology is a complex field that requires a deep understanding of the endocrine system and its role in regulating the body’s hormones. Endocrinologists must be able to interpret laboratory tests and understand the underlying causes of endocrine disorders. They must also be able to develop individualized treatment plans to address the specific needs of each patient.

Diagnosing PCOS and Diabetes

Endocrinologists are experts in diagnosing and managing PCOS and diabetes. PCOS is a hormonal disorder that affects the ovaries, and it is characterized by irregular menstrual cycles, excess facial and body hair, and infertility. To diagnose PCOS, an endocrinologist will perform a physical exam and order laboratory tests to measure hormone levels. The endocrinologist will also ask the patient about her symptoms and family history to determine if PCOS is the cause.

Diabetes is a chronic condition that affects the body’s ability to process sugar. To diagnose diabetes, an endocrinologist will perform a physical exam and order laboratory tests to measure blood sugar levels. The endocrinologist may also order imaging tests to check for signs of diabetes-related complications.

Treating PCOS and Diabetes

Once the endocrinologist has diagnosed PCOS or diabetes, they will develop an individualized treatment plan to address the patient’s specific needs. For PCOS, the endocrinologist may recommend lifestyle changes such as weight loss, exercise, and dietary changes to help manage symptoms. The endocrinologist may also prescribe medications to regulate hormone levels and improve fertility.

For diabetes, the endocrinologist may recommend lifestyle changes such as weight loss, exercise, and dietary changes to help manage blood sugar levels. The endocrinologist may also prescribe medications to help regulate blood sugar levels. In addition, the endocrinologist may recommend regular check-ups to monitor the patient’s progress and to adjust the treatment plan if needed.

Conclusion

Endocrinology plays an important role in managing PCOS and diabetes. Endocrinologists are experts in diagnosing and treating these conditions, and they are trained to develop individualized treatment plans that address the specific needs of each patient. By working with an endocrinologist, patients can get the help they need to manage their PCOS or diabetes and achieve their health goals.

Endocrinology is a complex field that requires a deep understanding of the endocrine system and its role in regulating the body’s hormones. An endocrinologist can help patients with PCOS and diabetes manage their conditions and achieve their health goals. By working with an endocrinologist, patients can get the help they need to manage their PCOS or diabetes and achieve their health goals.

From https://www.diabetesincontrol.com/the-role-of-endocrinology-in-managing-polycystic-ovary-syndrome-and-diabetes/

Basics: Diagnostic Procedures in Suspected Adrenocortical Carcinoma

Webinar: “Navigating Adrenal Health”

 

Join NADF for the first annual virtual conference for patients and caregivers, “Navigating Adrenal Health”. With talks on topics ranging from research updates to accessing patient resources to EMS standards and expectations, participants can prepare for a wealth of information for patients, caregivers, and clinicians alike.

​Register today – FREE for all!


CALENDAR OF EVENTS

THURSDAY, OCTOBER 2ND

NADF at 40 Years
Paul Margulies, M.D., FACP, FACE
NADF Medical Director

Adrenal Crisis and EMS: Standards and Expectations
Joshua Stilley, M.D.
Emergency Medicine
Chair of the Missouri State Advisory Council on EMS

Recreating Human Adrenal Gland In Dish: Toward Endocrine-Level Reconstruction
Kotaro Sasaki, M.D., Ph.D.
Associate Professor at The University of Pennsylvania
Member, Institute for Regenerative Medicine, University of Pennsylvania

Resources & Tips for Navigating Insurance, Financial, & Legal Issues
Joanna Fawzy Doran, Esq.
CEO, Triage CancerÂŽ

Imaging adrenal adenomas with [68Ga]Ga-PentixaFor
Liza Lindenberg, M.D.
Molecular Imaging Branch
National Cancer Institute

My AI Registry and Emerging Trends in Treatment Strategies
Elizabeth A, Regan, M.D., Ph.D.
Physician-Researcher at National Jewish Health
Principal Investigator, My AI (Adrenal Insufficiency) Registry
 

FRIDAY, OCTOBER 3RD

Adrenal Insufficiency: An Overview
Smita B. Abraham, M.D.
Endocrinology, Diabetes and Metabolism
Montefiore Medical Center

Emergency Preparedness: Solu-Cortef Injections for Adrenal Crisis
AJ Connor BSN, RN, BME
Addison’s disease patient
NADF Pennsylvania Support Group Leader

Everything You Need to Know about Adrenal Insufficiency in Youth in 30 Minutes or Less
Mitchell E. Geffner, M.D.
Professor Emeritus of Pediatrics
Keck School of Medicine of USC
Children’s Hospital Los Angeles
Ron Burkle Chair in the Center for Endocrinology, Diabetes, & Metabolism

Cushing’s talk – details forthcoming

Introduction to Congenital Adrenal Hyperplasia: Daily and Emergency Treatment
Selma Feldman Witchel, M.D.
Professor Emerita University of Pittsburgh
UPMC Children’s Hospital of Pittsburgh

NADF Resources for patients and caregivers
Vanessa O’Rourke
Community Engagement Manager
NADF

💉 Helpful Doctors: Ohio

 

Many people on the message boards see Dr. Kirschner.  Here’s a short adrenal video:

 

 

When it comes to adrenal cancer care, expertise is critical. The James at Ohio State expert Dr. Lawrence Kirschner explains what you should look for and why.

The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute is located at 460 W. 10th Ave. on the Ohio State campus. (43210). To learn more about the OSUCCC – James visit: https://cancer.osu.edu/

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