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Standard protocol is to start with a 24-hour urine free cortisol (UFC) Depending on the results of the UFC your physician will order test accordingly. 24-hour Urine free cortisol (UFC) identifies the amount of cortisol in the body during a 24-hour period. It is very important to catch all urine for the 24-hour urine test (If you spill even a small amount the test is void). It is recommended that a urine collection hat or urinal be used. Also, urine should be kept refrigerated and directions followed exactly as your lab or doctor instructed. ( Directions for collecting 24-hour urine.)
If the physician suspects Cushing's, it's not usual protocol to search for a tumor on MRI or CT scan prior to having other diagnostic tests. The reason for this is because non-producing (produce no excess hormones) endocrine tumors may be present and these tumors can be harmless. A surgical procedure could be performed to have a non-producing tumor removed and the patient would remain with Cushing's if the ACTH or cortisol producing tumor was located elsewhere in the body.
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If Cushing's Syndrome is a side effect of taking high doses of steroid hormones, withdrawing these medicines will allow the body to go back to normal.
Cushing's disease is best treated with the surgical removal of the pituitary tumor, usually by minimally invasive endoscopic surgery (through a nostril) or some physicians still prefer to use the sublabial transsphenoidal resection (cut under the top lip). When pituitary surgery is not successful, radiation such as gamma knife and photon knife radio surgery is sometimes used as a second choice of treatment.
Ectopic ACTH producing tumors are often malignant. Removing this cancer or treating it with radiation or chemotherapy may help in improving the Cushing's Syndrome. If the tumor is benign, or it can be completely removed, surgery may be a cure. Most of the time, reduction of the cortisol production from the adrenals with medication is useful while the ACTH-producing tumor is being treated.
Adrenal adenomas are almost always treated by surgically removing the adrenal gland that the tumor is located on. Adrenal carcinomas can be cured if removed early. Unfortunately, if they have already spread beyond the adrenal gland and are not curable, chemotherapy and other medicines are often used to try to control the tumor but do not cure it.
There are medications available that can be used to treat any form of inoperable or incurable Cushing's but they can have side effects in some patients and require monitoring. Surgical cure for the primary cause of the Cushing's is always the best, if possible.
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Recovery from the actual surgical procedure to remove a Cushing’s causing tumor is basically like any other corrective surgery. There will be limitations with such things as lifting, bending, driving, and returning to work, etc. the surgeon should make the recommendation for such limitations depending on your individual needs.
It's not uncommon for patients who have had pituitary surgery to experience headache, facial, and/or sinus pain. The pain and discomfort should improve on a daily basis following surgery. If your pain or discomfort should get worse contact your neurosurgeon immediately.
Headache, chills, fever, yellow or green nasal discharge, and a stiff neck may all signify an infection. You should notify your physician if you notice any of these symptoms. If you experience a persistent nasal discharge whether it be clear watery, bloody, or yellowish green you should call your physician immediately. Also, if you develop abnormalities in your vision you should call your physician.
If you experience excess thirst or urination it could be a sign of developing diabetes insipidus. This disorder could cause dehydration and you would need immediate evaluation. Therefore, contact your physician imminently.
Sometimes after pituitary surgery and even more common after surgery for Cushing’s disease a disorder of salt and water metabolism can occur (low blood sodium levels) causing nausea, vomiting, confusion, poor concentration, headache, and muscle aches. This usually occurs between 7 to 10 days after surgery. Contact your physician immediately if you experience these symptoms.
After adrenal surgery you should notify your physician if you should notice any redness or increased discharge from the surgery site or an increases in pain as this could be an indication of infection.
If you were prescribed replacement hormones at the time of discharge you should take these medications, without interruption, as prescribed by your physician. Your glucocorticoid hormone dosage may require adjustments. However, always consult your physician before making any adjustments in your medication.
Some symptoms that may represent complications after any surgery may include but not limited to shortness of breath, swelling in one or both legs, unusual pain in an area of your body, chest pain, or dark stool. If any of these symptoms occur contact your physician.
Contact your physician if you experience any of the symptoms mentioned in this publication or if you develop any additional or unusual symptoms. If you can not reach your physician then as always proceed to the nearest emergency department or call 911.
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After pituitary and adrenal surgery, adrenal insufficiency often occurs as replacement steroid hormones are tapered and adrenal hormone production slowly improves toward normal. If hormone production does not return to normal then replacement hormones will be needed on a permanent basis. Symptoms of adrenal insufficiency are dizziness, weakness, nausea and loss of appetite.
As the cortisol declines the body will start to go into a withdrawal process due to craving the cortisol it has been used to. This is a good thing! One may ask “How can this be a good thing?” Well…..if the cortisol is declining or absent then it’s an indication that your surgery was a success!
After pituitary surgery some physicians prefer to give the patient cortisol replacement and gradually withdraw them. While other physicians prefer to let the patient drop to a very low level or what we know as “crash” usually within 24-48 hours after surgery. Obviously, various physicians believe that both methods of preference have advantages and disadvantages. However, this does not indicate that one method is the correct method and the other incorrect. It is a matter of preference. In some cases the method of withdrawal that the physician prefers could depend upon the individual circumstance. Such factors as the physical condition of the patient, how long the patient has had Cushing’s, how high the cortisol level was prior to surgery, etc. could effect the decision that your physician makes. Your physician can make the best decision for your withdrawal based on your individual needs.
Whether your physician prefers to let you crash immediately after surgery or do it gradually, at some point you will need to start working toward decreasing your glucocorticoid hormone replacement. This is in an effort to see if the remaining pituitary gland will wake up and start working again.
As you start to decrease your glucocorticoid hormone replacement you will most likely start to notice some withdrawal symptoms if your surgery was a success. You will most likely experience some symptoms similar to those you experienced with Cushing’s and sometimes it’s hard to distinguish between the two. Muscle aches and pains are very common with withdrawal. Fatigue is a common symptom, also. It is very important to learn the difference between withdrawal symptoms and an adrenal crisis.
When returning home after your surgery a nice quiet atmosphere with loving support of family and friends will be most helpful in achieving a speeding recovery.
Disclaimer: Cushing’s Understanding Support & Help Org. We're a non-profit organization. We're not a medical authority, therefore we do not claim to have medical knowledge. Always consult your doctor or healthcare provider with any medical questions that you have concerning tests, treatment, advice, etc. This information is provided as a service to Cushing’s patient's their family and friends and should never be considered as medical advice. It can be printed from this site for personal use only. The information is not to be edited. Using the information for any other reason than mentioned above requires prior written authorization from CUSH.