(BPT) – The endocrine system is a collection of glands that secrete hormones to regulate key functions in the body, including mood, growth and development. When one of the glands in the endocrine system is not functioning properly and the body produces too much or too little of certain hormones, health complications may occur.
In 1932, Dr. Harvey Cushing discovered a rare but serious endocrine disorder called Cushing’s disease. Cushing’s disease is caused by a noncancerous tumor on the pituitary gland in the brain, which ultimately leads to high levels of a hormone called cortisol in the body.
Following diagnosis and subsequent surgery to remove the pituitary tumor, regular monitoring of cortisol levels is critical to ensure the disease is under control, help prevent serious health consequences, and identify recurrence or persistent disease. As signs of recurrence or persistent disease may be difficult to recognize, it can be challenging for patients to manage Cushing’s disease over the long term.
Let’s take a hypothetical look at how Harvey Cushing might advise patients on the long term management and monitoring of Cushing’s disease, based on the Endocrine Society’s Clinical Practice Guidelines.
What would Harvey Cushing do…
…if patients insist they feel fine during a checkup six months following pituitary surgery?
“I would run through a comprehensive wellness check-list to determine whether the patient might be overlooking a symptom.”
Signs and symptoms of recurrence and persistent disease are difficult to recognize and can easily be mistaken for other diseases so regularly following up with an endocrinologist is recommended for timely detection and optimal treatment. Discussing symptoms with your health care provider and testing your hormone levels every six months is critical to ensure the disease is under control, even if you have not noticed signs of a recurrence.
…if after a pituitary surgery a patient reported experiencing insomnia, weight gain and muscle weakness?
“Insomnia and muscle weakness are classic signs of Cushing’s disease so I would immediately check the patient’s cortisol levels to determine if they were experiencing persistent disease or a recurrence and if so, re-evaluate their current treatment plan. I would also encourage them to come in for routine testing to monitor their hormone levels.”
Approximately one third of patients experience a relapse even after pituitary surgery. Regularly monitoring hormone levels can help identify recurrence or persistent disease early and enable prompt treatment adjustments to help minimize serious health complications.
…to help patients dealing with persistent disease?
“I would coordinate with other members of the patient’s multidisciplinary team to ensure there is consensus on the patient’s individualized care plan and that we are appropriately managing all aspects of the patient’s health.”
Keeping track of the way your disease evolves is essential because your treatment plan will evolve as well. Open and honest communication is key among the patient and endocrinologist, as well as among the multidisciplinary team, to ensure proper management of the disease and to identify and treat related health consequences.
…if a patient was suffering from emotional instability or severe depression?
“I would encourage my patients to join a support group and maintain an open dialogue with their friends and family about their journey with the disease.”
Living with Cushing’s disease can be overwhelming and feel isolating. Joining support groups, both online and in person, can help patients and caregivers share advice and resources while providing support to each other throughout the entire journey. Communicating openly with friends and family members can also be helpful, not only emotionally, but also in identifying physical problems that may indicate persistent disease or recurrence.
Novartis is committed to helping transform the care of rare pituitary conditions and bringing meaningful solutions to people living with Cushing’s disease. Recognizing the need for increased awareness, Novartis developed the “What Would Harvey Cushing Do?” educational initiative that provides hypothetical responses from Dr. Cushing about various aspects of Cushing’s disease long term management based on the Endocrine Society’s Clinical Guidelines.