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What to Expect During Recovery, Tapering and Follow-up

Patients always ask “how long does it take to recover normal adrenal and pituitary function?” and unfortunately, there is absolutely no way to know. There is a wide variation in the severity of disease and each person has a very different recovery experience. Recovery involves two aspects, recovery of the biochemical aspects and physical recovery.

Dr. Mary Lee Vance, Endocrinologist at University of Virginia, Charlottesville, VA

Biochemical Recovery

After surgery, all the pituitary hormones (thyroid, growth hormone and the male and female hormones) should be checked to ensure normal levels. After 8 weeks, patients are evaluated for ACTH and cortisol after being off hydrocortisone replacement for 2 days to determine if replacement is still required. It usually takes from 2-9 months to discontinue replacement, but every patient is different. Low cortisol 2 months after surgery is a very good sign of a sustained remission.

Physical Recovery

Dr. Vance then discussed most of the particular symptoms of Cushing’s and what resolves, pointing out that recovery takes time. For example, high blood pressure and diabetes can resolve completely and if not, become easier to manage. Also, with normal cortisol levels, appetite does decrease, but losing weight does require calorie restriction. Osteoporosis will improve, but again, it takes time and if Cushing’s is the cause of kidney stones, they usually don’t recur. Dr. Vance discussed the very real problem of blood clotting issues, having seen this post op, thus oral contraceptives should be avoided before and for several months after surgery and a daily aspirin after surgery is a good idea. Patients normally experience muscle and joint pain, weakness, fatigue and memory and concentration issues, which are part of a steroid withdrawal syndrome. Gradual improvement can be anticipated, but these things do not resolve over night. Regrowth of hair is gradual because the hair cycle is 6 months, fine facial hair resolves, but the darker hair, while it improves, may require a cold laser treatment. For dry skin, she recommended application of lotion after a shower without drying off so that moisture gets trapped in your skin. The red face and skin darkening resolve and stretch marks may remain, but their color becomes normal. Sexual function and fertility usually resolve if normal pituitary tissue remains.

Mental Recovery

Depression takes a while to resolve and patients on antidepressants should not stop their medication immediately after surgery. In regards to memory and concentration, it has been reported in the literature that Cushing’s patients do show a decrease in brain volume and since cortisol acts on the brain, this also influences function. Brain volume has been shown to increase following successful treatment, but again, this takes time. 

What you can do

As for what patients can do to help themselves, she recommended good nutrition with calorie restriction for weight loss, moderate, non-traumatic exercise like swimming and strength training, continuing antidepressants and getting support, be it family, friends or other support groups. She pointed out that family and friends may not be aware of the long recovery time, which why family should be involved before surgery.

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