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Symptoms Not Yet “In the Science”

Question:  I get frustrated when my doctor says there’s no science to back up certain symptoms I am convinced are part of Cushing’s – either I have had them or I know someone who has.  I feel certain that in time, lots of things that have no science behind them now WILL have science behind them.  Why do these patient-reported symptoms not get treated seriously sometimes?

Answer:  Because of the tremendous amount of overlap with other conditions, and the unfortunate inability of some physicians to put it all together, symptoms alone are not enough.  So we try to depend on laboratory tests to clinch the diagnosis, and avoid dangerous and fruitless medical or surgical therapies.  The lab tests, however, are difficult to perform properly, vary in accuracy from one lab to another, and may not be conclusive, either.  We need to be sure that there is excess cortisol being excreted, and that it is coming from excess ACTH. Dexamethasone suppression is not totally reliable, salivary cortisols may be variable, and fasting blood cortisol and ACTH are really important, along with 24 hr UFCs which can also be difficult to perform with total reliability.  The symptoms should trigger a consideration of the diagnosis of Cushing’s Disease, and a referral to an endocrinologist with experience with pituitary and adrenal disease.

By Dr. Edward Laws, Brigham and Women’s Hospital, Boston, MA (Summer 2018)

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