Director of Strategic Planning, Pituitary Network Association
For many patients with Cushing’s syndrome, a delayed diagnosis of six to 10 years is not uncommon. It’s hard to believe this is possible considering the information age in which we live.
Why is Cushing’s so difficult to diagnose? The answer is almost as elusive as diagnosing Cushing’s itself. There isn’t just one reason for a delayed diagnosis; there are many factors that come into play, all of which work against the patient.
It helps to understand that the glucocorticoid hormone cortisol controls nearly every organ and tissue in the body, and too much cortisol has an adverse effect on every organ and tissue. Cortisol production is regulated by the hypothalamic-pituitary-adrenal axis in the body. Causation factors for hypersecretion of cortisol can be within the axis, but it can also be ectopic or can be caused by taking corticosteroid medications.
As this hormone ravages the body, the clinical manifestation of nonspecific symptoms that overlap with other diseases begin to appear. Complicating diagnosis, often times Cushing’s patients’ symptoms are not textbook. As the illness progresses, it causes a decreased quality of life, hopelessness, and depression.
It is believed the average primary care doctor has probably never diagnosed a Cushing’s patient, and the training provided by most medical schools on pituitary-related illnesses is a distant memory to these physicians. Even some endocrinologists can miss the signs of this rare, complex disease.
Physicians are often taught to focus on the likeliest possibilities instead of looking at the whole constellation of symptoms. The symptoms are treated while the disease does untold damage. Patients see many doctors and are given multiple medications. If diagnosed and treated at this point, recovery will be a long road and some symptoms may be irreversible.
Improving the process
There is not one definitive test used when Cushing’s is suspected, which further complicates diagnosis. Physicians often run multiple tests depending on causation, which can include MRI, blood assays, urine test, CRH and ACTH stimulation tests, saliva test, dexamethasone suppression test, and the more invasive Inferior Petrosal Sinus Sampling.
Future research and development is needed to simplify this process. Ultimately, awareness in the medical community is key to earlier diagnosis. The Pituitary Network Association produces monthly webinars presented by pituitary specialists that are posted to our website, as well as to an educational platform for doctors with over 250,000 subscribing physicians.
We also have a Continuing Medical Education program for nurses on our website as we know nurses are the first person to see the patient. Our goal is to help every Cushing’s patient who may be forgotten, abandoned, or, worse yet, undiagnosed after many years of suffering, find the answers they are looking for. Knowledge is the best defense.