Cushing's Syndrome & Disease - After Treatment

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How Can I Expect to Feel After Treatment for Cushing’s Disease?

Most people will start to feel gradually better after surgery and the hospital stay may be quite short if there are no complications. It can take some time to feel completely back to normal, to lose weight, to regain strength, and to recover from depression or loss of memory. It is important to remember that the high cortisol levels physically change the body and brain, and that these changes may reverse quite slowly. This is a normal feature of the recovery period and patience is definitely a virtue here.

Following Pituitary Surgery
After successful pituitary surgery, cortisol levels are very low. This can continue for 3–18 months after surgery. These low levels of cortisol can cause nausea, vomiting, diarrhea, aches and pains, and a flu-like feeling. These feelings are common in the first days and weeks after surgery as the body adjusts to the lower cortisol levels. Doctors give people a cortisol-like medicine until recovery of the pituitary and adrenal glands is either well under way or complete.

Hydrocortisone or prednisone is usually used for this purpose. Doctors monitor the recovery of the pituitary and adrenal glands by measuring morning cortisol values, or by testing the ability of the adrenal glands to secrete cortisol in response to an injected medication similar to ACTH.

Until the pituitary and adrenal glands recover, the body does not respond normally to stress – such as illness – by increasing cortisol production. As a result people who suffer with ‘flu’, fever or nausea may have to double the oral dose of the glucocorticoid when they are sick. However, this increased dosage should only be used for 1–3 days. On occasion, people can suffer vomiting or severe diarrhea that prevents them from absorbing the glucocorticoids taken by mouth.

In this situation, it may be necessary to receive injections of dexamethasone or another glucocorticoid, and seek emergency medical care. Patients should wear a MedicAlert bracelet until glucocorticoid replacement is stopped.

If it is necessary to have a prolonged increase in hydrocortisone, a doctor should evaluate this need, and a ‘tapering’ regimen may be needed to reduce the dose back to the daily requirement.

Following Adrenal Gland Surgery
People who have had their adrenal glands removed will have to take a glucocorticoid (like cortisone) and mineralocorticoid fludrocortisone (brand-name Florinef) for the rest of their life. There may be a concern that the pituitary tumor will enlarge, so MRI imaging of the pituitary gland may be done after this surgery. People whose adrenal glands have been removed may have initial symptoms that are similar to those after pituitary surgery, and they should take extra glucocorticoid during illness as described above, and wear a MedicAlert bracelet.

It is important to note that, if you are taking replacement cortisol, there may be a number of occasions when you need additional replacement. This can include stressful situations, such as surgical procedures – whether or not related to Cushing’s syndrome – dental procedures, and so on. You should discuss your specific condition with your endocrinologist and ensure you know what situations to look out for and what action to take.