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

Cushings Syndrome/Disease can be healed or cured through change in diet or exercise

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.

What Causes Overweight and Obesity?

Health Conditions

Some hormone problems may cause overweight and obesity, such as underactive thyroid (hypothyroidism), Cushing’s syndrome, and polycystic ovarian syndrome (PCOS).

Underactive thyroid is a condition in which the thyroid gland doesn’t make enough thyroid hormone. Lack of thyroid hormone will slow down your metabolism and cause weight gain. You’ll also feel tired and weak.

Cushing’s syndrome is a condition in which the body’s adrenal glands make too much of the hormone cortisol. Cushing’s syndrome also can develop if a person takes high doses of certain medicines, such as prednisone, for long periods.

People who have Cushing’s syndrome gain weight, have upper-body obesity, a rounded face, fat around the neck, and thin arms and legs.

PCOS is a condition that affects about 5–10 percent of women of childbearing age. Women who have PCOS often are obese, have excess hair growth, and have reproductive problems and other health issues. These problems are caused by high levels of hormones called androgens.

Read the entire article at http://www.nhlbi.nih.gov/health/health-topics/topics/obe/causes

Research Study: An Open Label Study to Assess the Safety and Efficacy of COR-003 (2S, 4R-ketoconazole) in the Treatment of Endogenous Cushing’s Syndrome

Objectives:         

The purpose of this study is to test the effects of different doses of COR-003 on people with Cushing’s syndrome (CS) primarily by measuring the cortisol levels in urine and secondarily by measuring other health parameters such as blood pressure, weight, and liver function. This study is also being conducted to see if there is any harm caused when using COR-003.

This study is an open label study. That means both the health providers and the participants in the study are aware of the drug or treatment being given.

Eligibility:

Adult Subjects (18 years or older) with elevated levels of cortisol due to endogenous CS.

Confirmed diagnosis of persistent or recurrent CS (with or without therapy) or newly diagnosed disease, if subjects are not candidates for surgery. CS will be defined according to the criteria in the guidelines for diagnosis of CS (Nieman 2008).

Women who are pregnant or lactating are not eligible for this study.

Individuals with other health conditions or diagnoses may not be eligible for this study.

These and other eligibility criteria are best reviewed with a doctor who is participating in the study. You can also get more detailed eligibility information about the study by clicking here to visit http://www.clinicaltrials.gov.

Study Design:

  • The study will begin with a screening period to make sure subjects are eligible to participate in the study.
  • After the screening period, subjects who are eligible for participation will each be given several different doses of COR-003, to be taken orally in tablet form.
  • After an individualized dose has been selected, participants will take COR-003 for six months.
  • Finally, participants will continue in the study for an additional six months at doses to be determined by the study doctor.

 

Throughout the study, participants will meet regularly with a study doctor and will take part in a variety of medical tests to make sure they are doing well and to see if COR-003 is working.

Participants in the study should be sure they have the time to participate. Participants will generally be followed for over a year:

Study Locations

The study is currently taking place in several places around the world (United States, Belgium, France, Israel, Netherlands, Spain, and Sweden).
Additional information on the study can be found at clinicaltrials.gov through this link.

Study sponsor: Cortendo AB

For more information, please contact:

Jim Ellis at Cortendo AB tel: +1 (610) 254-9245 or jellis@cortendo.com

 

Call for Papers: Cushing’s Syndrome: New Evidence and Future Challenges

Call for Papers

Cushing’s syndrome is a rare and potentially lethal disease which still represents a challenge for the endocrinologists, being characterized by elevated morbidity even long-term after the remission of hypercortisolism. Several diagnostic issues prevent an early recognition of the disease and rate of recurrence is significantly high after surgical, medical, or radiotherapy management.

Recent advances of biology and medicine are improving our knowledge on genetics and pathophysiology of this disease, both at the pituitary and adrenal level. New therapeutic agents are currently under investigation and an impelling need for efficacy and safety studies is rising in the endocrinology community. At the same time, the role of the “old” agents in the clinical practice is under debate and deserves a thorough analysis on larger series than those currently available. Likewise, the need for specific treatment of comorbidities is a clinical question which still remains unsolved.

We invite authors to submit original research and review articles that will stimulate the continuing efforts to understand the molecular pathology underlying Cushing’s syndrome, the development of strategies to diagnose and treat this condition in adults and children, and the evaluation of outcomes.

Potential topics include, but are not limited to:

  • Advances in genetics of Cushing’s syndrome
  • Diagnostic issues in Cushing’s syndrome
  • Novel paradigms for treatment of Cushing’s syndrome
  • Role of the “old” pharmacological agents in the treatment of Cushing’s syndrome
  • Persistent increased mortality and morbidity after “cure” of Cushing’s syndrome
  • Role of inflammation in the pathogenesis of Cushing’s syndrome
  • Cushing’s syndrome as model of metabolic derangements
  • Challenges in the diagnosis and treatment of paediatric Cushing’s syndrome
Manuscript Due Friday, 8 May 2015
First Round of Reviews Friday, 31 July 2015
Publication Date Friday, 25 September 2015

Lead Guest Editor

  • Elena Valassi, Autonomous University of Barcelona, Barcelona, Spain

Guest Editors

From http://www.hindawi.com/journals/ije/si/156126/cfp/