Our Picks

Dr. Theodore Friedman hosts Jay Khorsandi, DDS and Barbara Burggraaff, MD from Snore Experts for an important webinar on insomnia

Topics to be discussed include:
• What are the causes of insomnia?
• How do hormone imbalances lead to insomnia?
• What lifestyle changes can you do to help with insomnia?
• What supplements are helpful for insomnia?
• What medicines are helpful for insomnia?

Sunday • June 2nd • 6 PM PST

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Click here on start your meeting.or
https://axisconciergemeetings.webex.com/axisconciergemeetings/j.php?MTID=m2f7d9547a80ec47e43869517ef006f34
OR
Join by phone: (855) 797-9485

Meeting Number (Access Code): 807 924 444
Meeting Password: hormones

Your phone/computer will be muted on entry. There will be plenty of time for questions using the chat button.

For more information, email us at mail@goodhormonehealth.com

Cushing's syndrome is a rare disease which affects 65 patients in one million inhabitants of the EU. Cushing’s syndrome is a state where the body is chronically exposed to a high concentration of cortisol.

The signs of the disease are often overlooked. It took 14 years to diagnose Ida with the disease and to start treating it successfully. On Cushing’s Awareness Day, Ida emphasizes the importance of communication between the patient and the doctor.

 

The 11th annual Pituitary Day will take place on October 19, 2019  Patients living with pituitary disorders can hear lectures from our pituitary specialists, see movies of pituitary surgeries and hear from other patients about their experience living with pituitary disease and undergoing surgery.

Attendance is free, and patients can bring one guest.

Call 410-955-3921 or reserve your spot by email at pituitaryday@jmhi.edu

More information at www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/pituitary_center/index.html

Metoclopramide, a gastrointestinal medicine, can increase cortisol levels after unilateral adrenalectomy — the surgical removal of one adrenal gland — and conceal adrenal insufficiency in bilateral macronodular adrenal hyperplasia (BMAH) patients, a case report suggests.

The study, “Retention of aberrant cortisol secretion in a patient with bilateral macronodular adrenal hyperplasia after unilateral adrenalectomy,” was published in Therapeutics and Clinical Risk Management.

BMAH is a subtype of adrenal Cushing’s syndrome, characterized by the formation of nodules and enlargement of both adrenal glands.

In this condition, the production of cortisol does not depend on adrenocorticotropic hormone (ACTH) stimulation, as usually is the case. Instead, cortisol production is triggered by a variety of stimuli, such as maintaining an upright posture, eating mixed meals — those that contain fats, proteins, and carbohydrates — or exposure to certain substances.

A possible treatment for this condition is unilateral adrenalectomy. However, after the procedure, some patients cannot produce adequate amounts of cortisol. That makes it important for clinicians to closely monitor the changes in cortisol levels after surgery.

Metoclopramide, a medicine that alleviates gastrointestinal symptoms and is often used during the postoperative period, has been reported to increase the cortisol levels of BMAH patients. However, the effects of metoclopramide on BMAH patients who underwent unilateral adrenalectomy are not clear.

Researchers in Japan described the case of a 61-year-old postmenopausal woman whose levels of cortisol remained high after surgery due to metoclopramide ingestion.

The patient was first examined because she had experienced high blood pressure, abnormal lipid levels in the blood, and osteoporosis for ten years. She also was pre-obese....

You do have one, right???

I loved the one that Natalie had and, after her death, I bought the same style as a way to honor her memory.


There's room for 5 lines on there - not enough for everything but enough to get me through an emergency...and I have had some.

 


 

There's also a line with my info number so when the EMTs call the tollfree number, they can get right to my complete info.

So - what do you have on yours?  Please share!

Rushworth RL, et al. Clin Endocrinol. 2019;doi:10.1111/cen.13985.

Only 4.8% of patients with adrenal insufficiency who use medical identification jewelry clearly indicate on their emblem the need for urgent parenteral hydrocortisone in the event of an adrenal crisis, potentially jeopardizing the ability to receive proper assistance in an emergency, according to a cross-sectional analysis published in Clinical Endocrinology.

“Although the use of medical identification jewelry is recommended for patients with adrenal insufficiency to assist in the prevention and treatment of an adrenal crisis, the results of this study indicate that this advice is taken up by only a modest proportion of patients,” R. Louise Rushworth, MBBS, PhD, FAFPHM, an adjunct professor and medical epidemiologist at the School of Medicine, Sydney, and the University of Notre Dame Australia, told Endocrine Today. “Patients with secondary adrenal insufficiency have a lower uptake than those with primary adrenal insufficiency despite their risk of an adrenal crisis approaching that people with primary adrenal insufficiency.”

In a cross-sectional analysis, Rushworth and colleagues analyzed data from 1,955 patients with adrenal insufficiency aged at least 20 years with an active subscription to a large medical jewelry provider (MedicAlert) as of September 2018. The researchers calculated subscription rates by adrenal insufficiency subtype, geographic area, age and sex using relevant population data.

In this video exclusive, Endocrine Today Editorial Board Member Maria Fleseriu, MD, FACE, professor of neurological surgery and professor of medicine in the division of endocrinology, diabetes and clinical nutrition in the School of Medicine at Oregon Health & Science University and director of the OHSU Northwest Pituitary Center, discusses why mild Cushing’s syndrome matters.

In the past mild autonomous Cushing’s has been referred to as “subclinical Cushing’s syndrome.”

“What is subclinical about a patient that has, for example, cardiovascular disease and osteoporosis?” Fleseriu said.

She describes how to screen for and treat mild Cushing’s syndrome in patients with adrenal incidentalomas.

Watch the video for more.


From Helio

"The Shattered Oak: Overcoming Domestic Abuse and a Misdiagnosis of Mental Illness," by Sherry Genga is based on a true story.

The story ends well through the interventions of a therapist, a very sharp nurse and the National Institute of Health (NIH). Or. as the story's hero describes it, "a little slice of heaven carved out just for me." This is a story of straight-forward disclosure in the first-person narrative that informs, inspires and provides one person's path through the wilderness of family dysfunction, abusive hardships in the extreme and extraordinary insights.

In spite of the kindness of a therapist and a courageous divorce in which she attains freedom from abuse for herself and her daughters, Barbara cannot shake a profound depression that leads to three suicide attempts. Deeply religious and spiritual, Barbara prays for enlightenment, or at the very least, a release from mental torment. But when she is committed to a mental hospital, she experiences a jolting loss of personal freedom and brutal treatment. It seems that she has gone from a life of torment to a life of torment in a new kind of hell. But through the attentive and kind professionalism of a nurse named Nancy, who notices markings on her body that seem to indicate Barbara has an undiagnosed medical condition, just recently discussed in medical journals, Barbara is released on medical advice to an NIH hospital in Bethesda, Md. It is at that point that her story mercifully changes for the better in her climb to effective treatments for Cushing's disease, pituitary cancer and a chance to recover her life.

In her post script, the author writes, "Some stories are meant to be a secret and some stories are meant to be forgotten. Some stories need to be heard to help the survivor live. There is help for women battling domestic violence, child abuse, suicide and Cushing's disease." There are links and resources for that kind of help at the end of the book.

LOS ANGELES — More than a century has passed since the neurosurgeon and pathologist Harvey Cushing first discovered the disease that would eventually bear his name, but only recently have several key discoveries offered patients with the condition real hope for a cure, according to a speaker here.

There are several challenges clinicians confront in the diagnosis and treatment of Cushing’s disease, Shlomo Melmed, MB, ChB, FRCP, MACP, dean, executive vice president and professor of medicine at Cedars-Sinai Medical Center in Los Angeles, said during a plenary presentation. Patients who present with Cushing’s disease typically have depression, impaired mental function and hypertension and are at high risk for stroke, myocardial infarction, thrombosis, dyslipidemia and other metabolic disorders, Melmed said. Available therapies, which range from surgery and radiation to the somatostatin analogue pasireotide (Signifor LAR, Novartis), are often followed by disease recurrence. Cushing’s disease is fatal without treatment; the median survival if uncontrolled is about 4.5 years, Melmed said.

“This truly is a metabolic, malignant disorder,” Melmed said. “The life expectancy today in patients who are not controlled is apparently no different from 1930.”

The outlook for Cushing’s disease is now beginning to change, Melmed said. New targets are emerging for treatment, and newly discovered molecules show promise in reducing the secretion of adrenocorticotropic hormone (ACTH) and pituitary tumor size.

“Now, we are seeing the glimmers of opportunity and optimism, that we can identify specific tumor drivers — SST5, [epidermal growth factor] receptor, cyclin inhibitors — and we can start thinking about personalized, precision treatment for these patients with a higher degree of efficacy and optimism than we could have even a year or 2 ago,” Melmed said. “This will be an opportunity for us to broaden the horizons of our investigations into this debilitating disorder.”

An investigational therapy improved quality of life and reduced disease symptoms for patients with endogenous Cushing's syndrome, according to new findings from the phase III SONICS study.

Patients taking oral levoketoconazole twice daily had significant reductions in mean scores for acne (-1.8), peripheral edema (-0.4), and hirsutism (-2.6), all secondary endpoints of the pivotal trial (P<0.03 for all), reported Maria Fleseriu, MD, of Oregon Health and Science University in Portland.

"We're looking forward to see the results of further studies and to add this therapy to the landscape of Cushing's," Fleseriu said here during a presentation of the findings at AACE 2019, the annual meeting of the American Association of Clinical Endocrinologists. "We have a newer medication and still we cannot make a dent in the outcomes of Cushing's, especially for patient-reported outcomes."

Free testosterone levels significantly decreased in women taking levoketoconazole (a ketoconazole stereoisomer and potent steroidogenesis inhibitor), from an average of 0.32 ng/dL down to 0.12 ng/dL (0.011 to 0.004 nmol/L, P<0.0001). Men had a non-significant increase: 5.1 ng/dL up to 5.8 ng/dL (0.177 to 0.202 nmol/L).

There were no significant changes from baseline to the end of maintenance for other secondary endpoints in the analysis: moon facies, facial plethora, striae, bruising, supraclavicular fat, irregular menstruation, and dysmenorrhea. However, significant improvements after 6 months of therapy were seen in patient-reported quality of life compared with baseline (mean 10.6 change on the Cushing QOL questionnaire) as well as a significant reduction in depressive symptoms (mean -4.3 change on the Beck Depression Inventory II).

The open-label, multicenter SONICS (Study of Levoketoconazole in Cushing's Syndrome) trial included 94 adult men and women with a confirmed diagnosis of Cushing's syndrome and elevated 24-hour mean urinary free cortisol (mUFC) levels...

Corcept Therapeutics is recruiting participants for its Phase 3 clinical trial evaluating relacorilant as a potential treatment for Cushing’s syndrome-related side effects such as high blood pressure and impaired glucose tolerance.

Also, findings from the study “A Randomized-Withdrawal, Placebo-Controlled, Phase 3 Study to Assess the Efficacy and Safety of Selective Glucocorticoid Receptor Antagonist, Relacorilant, in Patients with Cushing Syndrome (GRACE Study),” were presented at the 2019 Annual Meeting of the Endocrine Society (ENDO), in New Orleans, Louisiana.

In endogenous Cushing’s syndrome there is an “internal” culprit — usually a benign tumor — that makes the body produce too much of the hormone cortisol. The excessive amount of circulating cortisol can lead to serious problems, such as type 2 diabetes and high blood pressure.

...

Researchers plan to enroll 130 people in these U.S. cities: Indianapolis, Indiana; Metairie, Louisiana; Jackson, Mississippi; Albany, New York; Jamaica, New York; Wilmington, North Carolina; Miami, Florida; Summerville, South Carolina; El Paso, Texas; Oklahoma City, Oklahoma, and; Aurora, Colorado. More detailed information is available here.

The use of an insulin pump to deliver continuous pulsatile cortisol may be a viable treatment option in patients with severe adrenal insufficiency who are unresponsive to oral corticosteroids, according to study results presented at the 28th Annual Congress of the American Association of Clinical Endocrinologists, held April 24 to 28, 2019, in Los Angeles, California.

According to the investigators, increasing oral steroid doses may be required to prevent adrenal crisis in patients with adrenal insufficiency. However, in light of the associated side effects of long-term use of steroids, an alternative treatment method is needed. Insulin pumps, typically used to treat patients with diabetes, can be used to deliver steroids and may provide symptom control, prevent adrenal crisis, and lower required corticosteroid dose.

The current study enrolled patients with adrenal insufficiency who could not absorb oral corticosteroid treatment or were not responding to treatment. Of 118 patients with adrenal insufficiency, 6 patients were switched to pump treatment.

The results indicated that the use of cortisol pumps was associated with a 78.5% risk reduction for adrenal crisis compared with oral corticosteroids. As hydrocortisone dose was gradually tapered using the cortisol pump, there was a mean dose reduction of 62.77 mg compared with oral corticosteroid therapy.

The researchers noted that in addition to reducing the number of adrenal crises, use of a cortisol pump was found to be associated with better symptom control and quality of life.

“Continuous pulsatile cortisol replacement via pump is an option for management of severe adrenal insufficiency in patients unresponsive to oral therapy,” concluded the researchers.


From https://www.endocrinologyadvisor.com/home/conference-highlights/aace-2019/cortisol-pumps-may-be-viable-option-to-reduce-adrenal-crisis-in-severe-adrenal-insufficiency/

Increased cortisol secretion may follow a cyclic pattern in patients with adrenal incidentalomas, a phenomenon that may lead to misdiagnosis, a study reports.

Since cyclic subclinical hypercortisolism may increase the risk for heart problems, researchers recommend extended follow-up with repeated tests to measure cortisol levels in these patients.

The study, “Cyclic Subclinical Hypercortisolism: A Previously Unidentified Hypersecretory Form of Adrenal Incidentalomas,” was published in the Journal of Endocrine Society.

Adrenal incidentalomas (AI) are asymptomatic masses in the adrenal glands discovered on an imaging test ordered for a problem unrelated to adrenal disease. While most of these benign tumors are considered non-functioning, meaning they do not produce steroid hormones like cortisol, up to 30% do produce and secrete steroids.

Subclinical Cushing’s syndrome is an asymptomatic condition characterized by mild cortisol excess without the specific signs of Cushing’s syndrome. The long-term exposure to excess cortisol may lead to cardiovascular problems in these patients.

While non-functioning adenomas have been linked with metabolic problems, guidelines say that if excess cortisol is ruled out after the first evaluation, patients no longer need additional follow-up.

However, cortisol secretion can be cyclic in Cushing’s syndrome, meaning that clinicians might not detect excess amounts of cortisol at first and misdiagnose patients.

In an attempt to determine whether cyclic cortisol production is also seen in patients with subclinical Cushing’s syndrome and whether these patients have a higher risk for metabolic complications, researchers in Brazil reviewed the medical records of 251 patients with AI — 186 women, median 60 years old — followed from 2006 to 2017 in a single reference center.

Sharmyn McGraw searched for answers for seven years for whatever it was that was killing her; finally she diagnosed herself via the Internet with Cushing's disease, caused by a pituitary brain tumor. www.hormone411.org

Read Sharmyn's bio at https://cushingsbios.com/2019/03/16/sharmyn-in-the-media/

In: Pituitary, ISSN 1386-341X, E-ISSN 1573-7403, Vol. 22, no 2, p. 179-186Article in journal (Refereed) Published

Abstract [en]

Background: Studies on the incidence of Cushing's disease (CD) are few and usually limited by a small number of patients. The aim of this study was to assess the annual incidence in a nationwide cohort of patients with presumed CD in Sweden.

Methods: Patients registered with a diagnostic code for Cushing's syndrome (CS) or CD, between 1987 and 2013 were identified in the Swedish National Patient Registry. The CD diagnosis was validated by reviewing clinical, biochemical, imaging, and histopathological data.

Results: Of 1317 patients identified, 534 (41%) had confirmed CD. One-hundred-and-fifty-six (12%) patients had other forms of CS, 41 (3%) had probable but unconfirmed CD, and 334 (25%) had diagnoses unrelated to CS. The mean (95% confidence interval) annual incidence between 1987 and 2013 of confirmed CD was 1.6 (1.4-1.8) cases per million. 1987-1995, 1996-2004, and 2005-2013, the mean annual incidence was 1.5 (1.1-1.8), 1.4 (1.0-1.7) and 2.0 (1.7-2.3) cases per million, respectively. During the last time period the incidence was higher than during the first and second time periods (P<0.05).

Conclusion: The incidence of CD in Sweden (1.6 cases per million) is in agreement with most previous reports. A higher incidence between 2005 and 2013 compared to 1987-2004 was noticed. Whether this reflects a truly increased incidence of the disease, or simply an increased awareness, earlier recognition, and earlier diagnosis can, however, not be answered. This study also illustrates the importance of validation of the diagnosis of CD in epidemiological research.

Place, publisher, year, edition, pages

SPRINGER , 2019. Vol. 22, no 2, p. 179-186

Keywords [en]

Cushing's syndrome, Epidemiology, Incidence, Validation

In this video exclusive, Maria Fleseriu, MD, professor of neurological surgery and professor of medicine in the division of endocrinology, diabetes and clinical nutrition in the School of Medicine at Oregon Health & Science University and director of the OHSU Northwest Pituitary Center, discusses management of hypopituitarism during pregnancy and an upcoming study of effects of growth hormone supplementation.

Successful in vitro fertilization and even natural pregnancy are possible for women with hypopituitarism, according to Fleseriu.

“Our job as endocrinologists is to make sure that we’re focusing on replacing all the pituitary hormones at the right level,” she said.

Fleseriu outlines considerations for assessing hormone levels and determining which should be supplemented — before, during and after pregnancy — for a healthy delivery and healthy baby. GH may be one of these, she said, despite its off-label use.

NEW ORLEANS — The investigational drug osilodrostat (Novartis) continues to show promise for treating Cushing's disease, now with new phase 3 trial data.

The data from the phase 3, multicenter, double-blind randomized withdrawal study (LINC-3) of osilodrostat in 137 patients with Cushing's disease were presented here at ENDO 2019: The Endocrine Society Annual Meeting by Beverly M.K. Biller, MD, of the Neuroendocrine & Pituitary Tumor Center at Massachusetts General Hospital, Boston.

"Osilodrostat was effective and shows promise for the treatment of patients with Cushing's disease," Biller said.

Osilodrostat is an oral 11β-hydroxylase inhibitor, the enzyme that catalyzes the last step of cortisol biosynthesis in the adrenal cortex. Its mechanism of action is similar to that of the older Cushing's drug metyrapone, but osilodrostat has a longer plasma half-life and is more potent against 11β-hydroxylase.

Significantly more patients randomized to osilodrostat maintained a mean urinary free cortisol (mUFC) response versus placebo at 34 weeks following a 24-week open-label period plus 8-week randomized phase, with rapid and sustained mUFC reduction in most patients.

Patients also experienced improvements in clinical signs of hypercortisolism and quality of life. The drug was generally well-tolerated and had no unexpected side effects.

Please be advised that this video contains graphic footage of surgery.

This video depicts an endoscopic transsphenoidal pituitary approach for a patient with a non-functioning macroadenoma. The surgery was performed by Dr. Garret Choby (Otolaryngology) and Dr. Jamie Van Gompel (Neurosurgery).

 

 

James Findling, MD, is a veteran of the endocrinology field, a clinical practitioner and a Cushing’s syndrome expert. For his efforts in these areas, particularly clinical practice, the Endocrine Society is honoring him with its Outstanding Clinical Practitioner Award at ENDO 2019 in New Orleans.

James Findling




Findling, who currently serves as director of community endocrinology services and clinical professor of medicine at the Medical College of Wisconsin in Milwaukee, has made his clinical practice a national one as, according to the Endocrine Society, he receives referrals from across the U.S. In addition, he has played an important role in Cushing’s syndrome research, including breakthroughs that the Endocrine Society has incorporated into its own clinical practice guidelines.

In a conversation with Endocrine Today, Findling discussed his serendipitous entrance into endocrinology, his own experience with medical history and his dream of playing golf with Barack Obama.

What was the defining moment that led you to your field?

Findling: In 1977, I was a resident in internal medicine at what was then the Milwaukee County General Hospital, which doesn’t exist anymore. I did an endocrinology rotation, and my attending physician was James Cerletty, MD. Endocrinology was the farthest thing from my mind as something I would be interested in, but I was assigned to do this rotation and it changed my life. I thought, “Oh my goodness. This is fascinating.” Dr. Cerletty was a fabulous teacher and great mentor. The reason I chose endocrinology was because of that 1-month rotation. I had never done it previously, and I just fell in love with it. It was primarily because of this one man, who just died recently. He changed my life.

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

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:

 



 



 







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

 



 



 



 



 



 







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

 

A possible Helpful Doctor.  Anyone have any feedback?

 

Little Rock-based Arkansas Neuroscience Institute Co-founder and Director Ali Krisht, MD, received the 2019 Herbert Olivecrona Award for his neurosurgery work, Arkansas Money & Politics reports.

What you should know:

1. Dr. Krisht earned the honor — sometimes known as the Nobel Prize for neurosurgery — for his cerebrovascular, pituitary and skull base tumor surgery work.

2. He will receive the honor at the Scandinavian Neurosurgical Society meeting, May 19-20 in Stockholm, Sweden, where he will also deliver the conference's Olivecrona lecture.

3. Dr. Krisht is a renowned neurosurgeon. He earned his medical degree from Beirut, Lebanon-based American University of Beirut and completed a residency at Atlanta-based Emory University.

4. He is Contemporary Neurosurgery's chief editor and served as Pituitary Disorders: Comprehensive Management's main editor.

5. Dr. Krisht has written 20 book chapters and 50 peer-reviewed manuscripts. He has delivered more than 170 lectures and has directed more than 40 workshops and hands-on courses.

I plan to do the Cushing's Awareness Challenge again. Last year's info is here:  https://cushieblogger.com/2018/03/11/time-to-sign-up-for-the-cushings-awareness-challenge-2018/

The original page is getting very slow loading, so I've moved my own posts to this newer blog.

As always, anyone who wants to join me can share their blog URL with me and I'll add it to the links on the right side, so whenever a new post comes up, it will show up automatically.

If the blogs are on WordPress, I try to reblog them all to get even more exposure on the blog, on Twitter and on Facebook at Cushings Help Organization, Inc.  If you have photos, and you give me permission, I'll add them to the Pinterest page for Cushing's Help.

The Cushing’s Awareness Challenge is almost upon us again!



 



Do you blog? Want to get started?



 



Since April 8 is Cushing’s Awareness Day, several people got their heads together to create the Eighth Annual Cushing’s Awareness Blogging Challenge.



 



All you have to do is blog about something Cushing’s related for the 30 days of April.



 



There will also be a logo for your blog to show you’ve participated.



 



Please let me know the URL to your blog in the comments area of this post, on the Facebook page, in one of the Cushing's Help Facebook Groups, on the message boards or an email  and I will list it on CushieBloggers (  http://cushie-blogger.blogspot.com/ )



 



The more people who participate, the more the word will get out about Cushing’s.

Written by Kathleen Doheny

With Oskar Ragnarsson, MD, PHD, and Tamara Wexler, MD, PhD

Adults with Cushing's syndrome, also called hypercortisolism, have a three-fold higher risk of dying from heart disease compared to the general population,1 according to findings reported by a Swiss research team. Although the researchers found that the risk drops when patients are under care, receiving treatment, and are in remission, the risks don't disappear completely.  For some perspective, heart disease is common in the United States, affecting, one in four adults, regardless of health status.2
"Patients with Cushing's disease have excess mortality [risk]," says Oskar Ragnarsson, MD, PhD, associate professor and a senior consultant in internal medicine and endocrinology at Sahlgrenska University Hospital in Gothenburg, Sweden. He is the author of the study, which appears in the Journal of Clinical Endocrinology & Metabolism.

Having Cushing's Requires Vigilance Beyond Disease Symptoms

Still, the news is not all bleak, he says. Simple awareness of the increased risks can help individuals reduce their risk, just as following your doctor’s treatment plan so remain in remission, Dr. Ragnarsson tells EndocrineWeb. In addition, patients who received growth hormone replacement appear to have better overall outcomes.1

Cushing’s syndrome occurs when your body is exposed to high levels of the hormone cortisol over a long period of time. This can be caused either by taking corticosteroid medicine orally, or if your body just makes too much cortisol.

Cushing’s disease patients in Sweden have a higher risk of death than the general Swedish population, particularly of cardiovascular complications, and that increased risk persists even in patients in remission, a large nationwide study shows.

The study, “Overall and disease-specific mortality in patients with Cushing’s disease: a Swedish nationwide study,” was published in the Journal of Clinical Endocrinology and Metabolism.

The outcomes of Cushing’s disease patients have improved with the introduction of several therapeutic approaches, such as minimally invasive surgery and cortisol-lowering therapies. However, mortality is still high, especially among those who do not achieve remission.

While currently patients in remission are thought to have a better prognosis, it is still unclear whether these patients still have a higher mortality than the general population. Understanding whether these patients are more likely to die and what risk factors are associated with increased mortality is critical to reduce death rates among Cushing’s patients.

A team of Swedish researchers thus performed a retrospective study that included patients diagnosed with Cushing’s disease who were part of the Swedish National Patient Registry between 1987 and 2013.

A total of 502 patients with Cushing’s disease were included in the study, 419 of whom were confirmed to be in remission. Most patients (77%) were women; the mean age at diagnosis was 43 years, and the median follow-up time was 13 years.

During the follow-up, 133 Cushing’s patients died, compared to 54 expected deaths in the general population — a mortality rate 2.5 times higher, researchers said.

The most common causes of death among Cushing’s patients were cardiovascular diseases, particularly ischemic heart disease and cerebral infarctions. However, infectious and respiratory diseases (including pneumonia), as well as diseases of the digestive system, also contributed to the increased mortality among Cushing’s...