Cushing’s Disease is Tough to Diagnose, but Help is Available

The pituitary gland is a pea-sized gland that acts as the body’s “master control” and governs the functioning of almost all of the other endocrine organs in the body.

These are called “glands” and they produce hormones that target specific tissues in the body.

When a person has Cushing’s disease, their pituitary gland is not producing enough of the hormone called adrenocorticotrophic hormone, or ACTH. That sounds simple enough, but the truth is Cushing’s is hard to diagnose.

Like many rare diseases, symptoms vary from person to person. Usually, the tumor on the pituitary gland, (remember—think pea-sized gland) may be too tiny to show up on an MRI, and it may intermittently release cortisol making the tumor “inactive.” Cushing’s is frequently misdiagnosed as:

  • depression
  • alcoholism
  • uncontrolled diabetes
  • obesity caused by overeating

Cushing’s affects women five times more than men and is found in all corners of the globe.

But a correct diagnosis is crucial to getting the appropriate treatment, and testing is usually conducted by an endocrinologist. It’s a frustrating reality for Cushing’s patients that tests must be repeated a number of times because cortisol levels fluctuate.

The Cushing’s Support and Research Foundation is working hard towards funding research for better treatments. They are an excellent source of information and welcome inquiries about Cushing’s. In fact, part of their mission statement says, “…Patients and families can benefit from support from others who have walked their steps before them. For this reason, patient and family support is paramount. The CSRF strives to put patients in touch with others who have experienced Cushing’s. Let us know how we can help!”

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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