Living with Cushing’s Disease

Cushing’s disease is caused by a tumor in the pituitary gland which raises cortisol to abnormal levels in the bloodstream. Cortisol is a steroid hormone that regulates a number of processes in the body, such as immune response, metabolism, and helping the body respond to stress.

Because the onset of the disease is gradual, affected people experience slow-developing symptoms that can eventually be debilitating. Diagnosis, treatment, and recovery can take an exceptionally long time, so the methods that clinicians use to deal with symptoms may vary throughout the progression of the disease.

Symptoms of Cushing’s

People with undiagnosed Cushing’s disease may experience incapacitating physical and emotional changes without explanation. If anyone has common symptoms of Cushing’s disease, such as rounding of the face, growth of fatty tissue between the shoulders, thin skin with bruises and stretch marks, or changes in mood or emotions, they should contact their doctor immediately.

Diagnosing Cushing’s disease is challenging and can take several months. Some people with Cushing’s may withdraw from family and friends. It may be difficult for others to understand what someone with undiagnosed Cushing’s disease is going through. Having to deal with the effects of the condition alone may result in depression. Individuals and families who are affected by the disease should work together with a clinical team to correctly diagnose the disease as quickly as possible.

Treating Cushing’s

Once the underlying cause of the symptoms has been identified, patients and their families can join support groups to get to know other families coping with similar challenges. Clinical teams should be able to recommend support groups in the area where the patient lives. The patient’s physician may also recommend dietary changes, such as reducing sodium consumption, taking vitamin D and calcium supplements, and limiting or even discontinuing the use of alcohol and tobacco products. If surgery is recommended to remove the tumor, the clinical team will also prepare the patient by providing information about potential risks of the operation.

After surgery

Following the procedure, patients may experience abnormally low cortisol levels for weeks, months, or even years. Most patients need to take replacement cortisol tablets until the pituitary gland recovers and can resume regular cortisol production.

If the tumor was exceptionally large, the pituitary gland may permanently lose functionality. In this case, patients might need to take synthetic supplements of the following hormones: cortisol, thyroid hormone, growth hormone, testosterone (in men), estrogen (in women), and vasopressin.

Patients should resume physical activities gradually, as it will take time to build up muscle that was lost during the illness. Physicians may also recommend low-impact exercises to reduce joint pain that may persist after treatment.

Patients are encouraged to continue monitoring their mental health after treatment, as they are still at risk of depression and emotional changes. Mental health symptoms should not be ignored. If patients experience mood changes or feelings of being overwhelmed, they should reach out to a physician or therapist.


Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.