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Why So Long to Get a Diagnosis?

Question: Like others, it took me a long time to obtain a correct diagnosis of Cushing’s. Why does it take so long before a doctor thinks of Cushing’s and is there anything that we can do so we are taken more seriously?

Answer: There are several factors that contribute to the difficulty of a Cushing’s diagnosis. First, Cushing’s is a rare disorder with an incidence rate of 5 cases per million. In contrast, diabetes is a very common disorder. Many physicians in private practice will never encounter a patient with Cushing’s, whereas most will see a number of diabetic patients. Thus, doctors are inclined to diagnose the most common disorder and in most cases, that diagnosis will be correct. The second reason for the difficulty in diagnosis is the minimal amount of training on Cushing’s that MD’s receive during medical school and their internships. This relates to the fact that Cushing’s is a rare disorder. Patient groups, such as yourselves, can be instrumental in increasing the awareness of Cushing’s in medical schools and teaching hospitals by sponsoring physician speakers who are experts in Cushing’s. A third reason for the difficulty in diagnosis has to do with non-specific symptoms. In other words, the symptoms associated with Cushing’s are symptoms that are also associated with more common disorders such as diabetes, high blood pressure, depression and obesity. There are other rare illnesses that are easier to diagnose simply because the symptoms are more specific.

As far as being taken more seriously prior to a diagnosis, I would highly recommend showing old pictures of yourself to your physician. A photo from several years before can illustrate a rapid change in appearance. Relatively rapid changes in appearance, without dramatic changes in lifestyle, usually indicate medical problems that warrant further evaluation.

By Dr. David Orth MD (Fall, 1996)

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