🦓 Day 26: Cushing’s Awareness Challenge 2019

People often ask me how I found out I had Cushing’s Disease.  Theoretically, it was easy.  In practice, it was very difficult.

In 1983 I came across a little article in the Ladies Home Journal which said: “If you have these symptoms…”

I found the row with my symptoms and the answer read “…ask your doctor about Cushing’s”.

After that article, I started reading everything I could on Cushing’s, I bought books that mentioned Cushing’s. I asked and asked my doctors for many years and all of them said that I couldn’t have it.  It was too rare.  I was rejected each time.

Due to all my reading at the library, I was sure I had Cushing’s but no one would believe me. My doctors would say that Cushing’s Disease is too rare, that I was making this up and that I couldn’t have it.

 

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

So, doctors typically go for the easily diagnosed, common diseases.  Just because something is rare doesn’t mean that no one gets it.  We shouldn’t be dismissed because we’re too hard to diagnose.

When I was finally diagnosed in 1987, 4 years later, it was only because I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker so my leg looked like a cut log with rings.

When I went to my Internist the next day he was shocked at the size of the rings. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist.

Fortunately, that new doctor ran a twenty-four-hour urine test and really looked at me and listened to me.  Both he and his partner recognized that I had Cushing’s but, of course, couldn’t do anything further with me.  They packed me off to an endo where the process started again.

My final diagnosis was in October, 1987.  Quite a long time to simply  “…ask your doctor about Cushing’s”.

Looking back, I can see Cushing’s symptoms much earlier than 1983.  But, that ‘s for a different post…

 

👥 Stanford Pituitary Patient Education Day

The Stanford Pituitary Center invites patients with pituitary disease, their family and friends to Stanford’s Pituitary Patient Education Day!

May 18, 2019 at the Sheraton Palo Alto Hotel
625 El Camino Real
Palo Alto, CA 94301 
USA

Registration Contact:

Jennie Visitacion
E: JennieV@Stanford.edu
Ph: 650-725-4715

Topics and Breakout Sessions:

  • Function of the pituitary gland
  • General review of pituitary tumors
  • Endoscopic endonasal surgery for pituitary tumors
  • Quality of life after endonasal surgery
  • Radiation therapy for pituitary tumors
  • Cushing’s Disease, prolactinoma, and acromegaly
  • Hypopituitarism therapy and growth hormone deficiency

Speakers:

  • Olivia Chu, NP, Nurse Practitioner
  • Robert Dodd, MD, Associate Professor of Neurosurgery
  • Juan Fernandez-Miranda, MD, Professor of Neurosurgery
  • Andrew Hoffman, MD, Professor of Medicine
  • Peter Hwang, MD, Professor of Otolaryngology
  • Laurence Katznelson, MD, Professor of Neurosurgery and Medicine
  • Erin Wolff, NP, Nurse Practitioner

Course Directors:

Dr. Juan C. Fernandez Miranda

Juan C. Fernandez-Miranda, MD, FACS
Professor of Neurosurgery, and by Courtesy, of Otolaryngology – Head & Neck Surgery
Co-Director, Stanford Skull Base Surgery Program

Dr. Laurence Katznelson

Laurence Katznelson, MD
Professor of Neurosurgery and of Medicine (Endocrinology)
Medical Director, Pituitary Center

🎬 Video: Cushing Disease & ACTH-Secreting Pituitary Tumors

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.

👥13th Annual Conference for Adults with Endocrine Disorder

 

13th Annual Conference for Adults with Endocrine Disorders
in Partnership with Barrow Neurological Institute Pituitary Center

February 28th, 2019 – March 3rd, 2019

Phoenix, Arizona

Schedule of Events
Thursday
5:00 pm – 7:00 pm Welcome Reception, Wyndham Garden Phoenix Midtown

Friday
9:00 am – 4:00 pm Exhibitors, Barrow Pituitary Center
10:00 am – 12:00 pm Educational Segments, Barrow Pituitary Center
12:00 am – 1:00 pm Lunch (included)
1:00 pm – 3:00 pm Educational Segments, Barrow Pituitary Center
5:00 pm – 8:00 pm Group outing to Scottsdale Waterfront
Saturday
10:00 am – 12:00 pm Educational Segments, Barrow Pituitary Center
12:00 am – 1:00 pm Lunch (included)
1:00 pm – 3:30 pm Educational Segments, Barrow Pituitary Center
Sunday
9:00 am – 1:30 pm Educational Segments, Wyndham Garden Phoenix Midtown

**********************************************************
Friday Educational Segments at Barrow Pituitary Center

10:00 am Managing Cushings: Navigating Through the Maze, Yuen
or
10:00 am Managing AGHD: Daily and Beyond, Knecht
11:00 am Hypothalamic Obesity: Not Just Calories In, Calories Out, Connor
12:00 pm LUNCH (included)
1:00 pm Me, Myself and My Adrenal Insufficiency, Yuen
2:00 pm Navigating the Medical Maze, Herring

Saturday Educational Segments at Barrow Pituitary Center

10:00 am Beyond AGHD and Cushings: Familial and Genetic Factors, Stratakis
11:00 am Q&A, Stratakis
12:00 pm LUNCH (included)
1:00 pm Tools for Coping with my Endocrine Disorder, Jonas
2:00 pm Finnigan and Friends: A Year in AI Training, Palmer
2:30 pm Quality of Life Study, Cushings, Edgar & Keil
or
2:30 pm Life is What You Make Of It, Jones

Sunday Educational Segments at Wyndham Garden Phoenix Midtown

9:00 am Preventing Muscle Wasting and Nutrition, Fine
10:00 am Nuances of Treating Hypothyroidism, Friedman
11:00 am Macrilen Stimulation Test for Growth Hormone Deficiency, Friedman
11:45 am The New and The Old for Diagnosing Cushing’s Syndrome, Friedman
12:30 pm Ask the Wiz, Friedman

Location
Barrow Neurological Institute at St. Joseph’s Hospital and Medical Center
Goldman Auditorium and Sonntag Pavilion
350 W. Thomas Rd.
Phoenix, AZ 85013

Transportation will be provided on Friday and Saturday between the Wyndham Hotel to Barrow for an hour prior to the segments and an hour after close of the segments. The hotel is approximately 1/2 mile away from Barrow Pituitary Center if you choose to walk or travel there on your own.

Hotel Room Rates and Reservations
Wyndham Garden Phoenix Midtown
3600 N. 2nd Ave.
Phoenix, AZ 85013

$109 per night + tax. Includes free wifi, parking and buffet breakfast

To make hotel reservations call 602-604-4900 and ask for The MAGIC Foundation guest room block. Refrigerators are first come so be sure to request one when making your reservation.

Airport Transportation
Transportation is not provided to/from the hotel from the airport. The Wyndham is approximately 9 miles from the airport. Preferred airport is Phoenix, AZ – PHX – Sky Harbor Intl.

Deadline to Register and book your hotel is January 28, 2019

View the entire PDF Program

📞 Webinar: Cushing’s Disease: Recent Advances in Medical Therapy

Presented by

Eliza Geer, MD
Medical director, Multidisciplinary Pituitary & Skull Base Tumor Center
Associate Attending, Endocrine Service
Memorial Sloan Kettering Cancer Center

After registering you will receive a confirmation email with details about joining the webinar.

Contact us at webinar@pituitary.org with any questions or suggestions.

Date: Wednesday, July 18, 2018
Time: 10:00 AM – 11:00 AM Pacific Daylight Time 1:00 PM – 2:00 PM Eastern Daylight Time

Webinar Description:

Learning Objectives:

Review Cushing’s disease treatment guidelines

Evaluate currently available medical therapies for Cushing’s disease

Discuss new therapies in clinical trials

Presenter Bio:

Dr. Geer is an endocrinologist who specializes in caring for people with pituitary and neuroendocrine diseases. She is the Medical Director of Memorial Sloan Kettering’s Multidisciplinary Pituitary & Skull Base Tumor Center, located at Memorial Hospital in Manhattan. Their multidisciplinary pituitary team provides personalized surgical and medical treatment for people with pituitary and skull base tumors, including prolactinomas, growth-hormone secreting adenomas (acromegaly), and Cushing’s disease. Their overall goal is to improve and advance the care of people with these conditions.

Dr. Geer’s research interests focus on achieving a better understanding of how and why pituitary tumors develop, and characterizing long-term outcomes in patients with Cushing’s disease. She has conducted a number of studies investigating body composition, adipose tissue regulation, and appetite in patients with Cushing’s disease, and she is involved in clinical trials investigating new medical therapies for patients with Cushing’s and acromegaly.

Dr. Geer completed her internship and residency at the NewYork-Presbyterian Hospital/Columbia Medical Center. She was a fellow in endocrinology and metabolism at the Icahn School of Medicine/Mount Sinai Medical Center, after which she was a member of the faculty for ten years. She is currently an associate professor of medicine and an active member of the Endocrine Society, the Pituitary Society, the Pituitary Network Association and the American Association of Clinical Endocrinologists.

🦓 Day 27: Cushing’s Awareness Challenge 2018

People often ask me how I found out I had Cushing’s Disease.  Theoretically, it was easy.  In practice, it was very difficult.

Ladies Home Journal, 1983In 1983 I came across a little article in the Ladies Home Journal which said: “If you have these symptoms…”

I found the row with my symptoms and the answer read “…ask your doctor about Cushing’s”.

After that article, I started reading everything I could on Cushing’s, I bought books that mentioned Cushing’s. I asked and asked my doctors for many years and all of them said that I couldn’t have it.  It was too rare.  I was rejected each time.

Due to all my reading at the library, I was sure I had Cushing’s but no one would believe me. My doctors would say that Cushing’s Disease is too rare, that I was making this up and that I couldn’t have it.

 

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

So, doctors typically go for the easily diagnosed, common diseases.  Just because something is rare doesn’t mean that no one gets it.  We shouldn’t be dismissed because we’re too hard to diagnose.

When I was finally diagnosed in 1987, 4 years later, it was only because I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker so my leg looked like a cut log with rings.

When I went to my Internist the next day he was shocked at the size of the rings. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist.

Fortunately, that new doctor ran a twenty-four-hour urine test and really looked at me and listened to me.  Both he and his partner recognized that I had Cushing’s but, of course, couldn’t do anything further with me.  They packed me off to an endo where the process started again.

My final diagnosis was in October, 1987.  Quite a long time to simply  “…ask your doctor about Cushing’s”.

Looking back, I can see Cushing’s symptoms much earlier than 1983.  But, that ‘s for a different post…

 

🎤 Surgical Management of Cushing’s Disease

Presented By:

Russell Lonser, MD, FAANS
Professor and Chair
Department of Neurological Surgery
Ohio State University Wexner Medical Center


After registering you will receive a confirmation email with details about joining the webinar.

Contact us at webinar@pituitary.org with any questions or suggestions.

Date: April 10, 2018
Time: 10:00 AM-11:00 AM Pacific Daylight Time, 1:00 PM – 2:00 PM Eastern Daylight Time

Learning Objectives:

  1. To define clinical features of Cushing’s disease.
  2. To describe management paradigms for Cushing’s disease.
  3. To understand the evaluation of Cushing’s disease patients.

Presenter Bio:

LonserRussell R. Lonser graduated with a B.A. in economics from Andrews University in 1990 and received his M.D. from Loma Linda University in 1994. He completed his neurosurgical training at the University of Utah in 2001. During his residency, he performed a 2-year research fellowship under the mentorship of Edward H. Oldfield, M.D., in the Surgical Neurology Branch at the National Institutes of Health (NIH). Upon completion of his residency, he joined the staff of the Surgical Neurology Branch at the NIH. He was Chief of the Surgical Neurology Branch at NIH before becoming Professor and Chair of the Department of Neurological Surgery at Ohio State University in 2012. He holds the Dardinger Family Chair in Neurosurgical Oncology.

Dr. Lonser’s research interests include development of drug delivery paradigms for the central nervous system pathology, as well as investigation of tumor pathogenesis and biology. Specifically, his scientific efforts are directed toward studying convective delivery and neoplasia pathogenesis/propagation in familial tumor suppressor syndromes, including von Hippel-Lindau disease. His clinical and surgical interests are centered on the treatment of brain, temporal bone and spinal cord tumors. He is an author on over 300 scientific and clinical publications. He received the Tumor Young Investigator Award from the American Association of Neurological Surgeons/Congress of Neurological Surgeons Section on Tumors in 2001 and Mahaley Clinical Research Award from the American Association of Neurological Surgeons/Congress of Neurological Surgeons Section on Tumors in 2013. He was the 2017 American Association of Neurological Surgeons/Congress of Neurological Surgeons Section on Tumors Bittner Lecturer. He is a co-inventor on a patent for methods for convection-enhanced delivery of therapeutic agents.

His contributions to organized neurosurgery include membership on the Executive Committee of the Congress of Neurological Surgeons. He was the Treasurer of the Congress of Neurological Surgeons and is President of the Congress of Neurological Surgeons. He also served on the Executive Committee for the American Association of Neurological Surgeons/Congress of Neurological Surgeons Section on Tumors. He has served on a number national committees for organizations involved in neurosurgical research. He is head of the Research Subcommittee in Head, Neck and Spine Injury Committee for the National Football League. He has been actively involved in the mentoring and training of over 40 neurosurgical fellows. He is on the Editorial Boards for NEUROSURGERY, World Neurosurgery and Journal of Neurosurgery. He is an Academic Editor for PLoS One and Science Reports. He is Consulting Editor for Neurosurgery Clinics of North America.

Dr. Lonser is married to Carolyn. They have 3 daughters, Hannah (born 2001), Sarah (2004) and Alicia (2007).