Question: I have a 4mm tumor on my pituitary gland and have had numerous tests showing high cortisol. An IPSS test confirmed that the pituitary gland is the problem. Unfortunately, my last several 24hr urine tests have been in the normal range. I am very symptomatic and am being told that the tumor cannot be removed until it is active again. I don’t understand why. 

Answer: As is the case in other patients with Cushing’s disease/syndrome, definitive therapy in patients with cyclic Cushing’s disease/syndrome involves surgery to remove the underlying tumor (once the condition has been diagnosed and the tumor localized with reasonable confidence). The reader is wondering why she was advised that pituitary surgery be delayed until the condition is shown to be active (i.e., a recent “cycle” of cortisol excess is documented).
Documentation of postoperative remission of Cushing’s disease rests on measuring very low cortisol levels (in morning blood, 24 hour urine, and late night salivary specimens) early postoperatively. This is anticipated to occur after successful tumor resection, since normal ACTH-producing pituitary cells typically take many months to recover and start functioning normally. Patients with cyclic Cushing’s who are not experiencing cortisol excess right before surgery are less likely to show very low cortisol levels right after tumor resection, which can make it very difficult for their physicians to know if they are truly in remission postoperatively.

By Dr. Nick Tritos, Massachusetts General Hospital, Boston MA