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Welcome to the new Cushing's Help and Support FAQ (frequently asked questions) page. This new area will be a compilation of our visitors most frequent questions. Questions and answers are still being added.

Please select either a category on the left, or type in a keyword to search the database of questions and answers. Please note that there are several questions waiting to be answered at this time. Your question will be answered as soon as possible. If your question is very urgent, you might want to check the message boards to see if your question has been answered, or add it yourself.

IMPORTANT: The information and material posted on this Web site is intended as general reference information only. Specific facts and circumstances may alter the concepts and applications of materials and information described herein. The information provided is not a substitute for professional advice and should not be relied upon in the absence of such professional advice specific to whatever facts and circumstances are presented in any given situation.



Treatments     List of Categories

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  • What happens if Cushing's is left untreated?

    If untreated, Cushing's Syndrome will cause continued weakness of the muscles, fatigue, poor skin healing, weakening of the bones of the spine (osteoporosis), and increased susceptibility to some infections including pneumonia and TB.

    Written by: Paul Margulies, M.D., F.A.C.P., F.A.C.E. Medical Director of NADF Clinical Associate Professor of Medicine, Cornell University Medical College and posted at http://www.medhelp.org/www/nadf4.htm

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  • Is there medical treatment for a craniopharyngioma?

    No, there are no medicines to treat this type of tumor. Most patients do have to take hormone replacement because of damage to the normal pituitary gland. Surgery is the first choice. Some patients also require radiation treatment.

    The answer to this question about pituitary tumors was developed by Mary Lee Vance, M.D., Professor of Medicine and Neurosurgery at the University of Virginia. Dr. Vance is an endocrinologist specializing in the treatment of pituitary diseases.

    For more information from Dr Vance, see Pituitary Tumors Frequently Asked Questions

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  • How is adrenal carcinoma (cancer) treated?

    Adrenal carcinomas (cancer) can be cured if removed early. Unfortunately, they are usually discovered after they have already spread beyond the adrenal gland and are then not curable. Chemotherapy and other medicines are often used to try to control the tumor but do not cure it. The excess cortisol production can be controlled with chemotherapy or by other medications like those mentioned for ectopic ACTH production: metyrapone, aminoglutethimide and ketoconazole. These medicines can be used to treat any form of inoperable or incurable Cushing's Syndrome, including Cushing's disease, but they can have serious side effects and require very careful monitoring and balancing with steroid hormone replacement therapies. Surgical cure of the primary cause of the Cushing's Syndrome is always the best, if possible.

    Written by: Paul Margulies, M.D., F.A.C.P., F.A.C.E. Medical Director of NADF Clinical Associate Professor of Medicine, Cornell University Medical College and posted at http://www.medhelp.org/www/nadf4.htm

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  • How is iatrogenic Cushing's treated?

    If the Cushing's Syndrome is a side effect of taking high doses of steroid hormones (iatrogenic), withdrawing these medicines will allow the body to go back to normal. The ability to taper or stop the steroids, however, depends on the type of disease being treated and the pattern of response. Sometimes, steroids cannot be totally stopped or may be reduced only to a limited degree because the illness being treated would worsen. In that case, some degree of persistent Cushing's Syndrome would remain as an unwanted side effect. Treatment of the effects of steroid excess would include management of high blood sugar with diet and medications, replacement of potassium, treatment of high blood pressure, early treatment of any infections, adequate calcium intake and appropriate adjustments in steroid doses at times of acute illness, surgery or injury.

    Written by: Paul Margulies, M.D., F.A.C.P., F.A.C.E. Medical Director of NADF Clinical Associate Professor of Medicine, Cornell University Medical College and posted at http://www.medhelp.org/www/nadf4.htm

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  • How is craniopharyngioma treated?

    The initial treatment for a craniopharyngioma is usually surgery. The goal of surgery is to completely remove the tumor while improving or at least preserving pituitary, visual and brain function. Depending upon the location of the tumor, several approaches may be utilized. If the tumor is predominantly above the pituitary fossa (suprasellar), a craniotomy is generally required for optimal exposure and tumor removal. In a minority of patients, the tumor is relatively small (less than 3 cm) and located primarily in the area of the pituitary gland (intrasellar). In such patients, a transsphenoidal route can be used. When the tumor cannot be completely removed, radiation treatment generally offers some degree of tumor control and prolonged survival. Both conventional (external beam) and stereotactic radiosurgery are effective in controlling growth of craniopharyngiomas, but stereotactic radiation delivers a higher radiation dose to the tumor more safely. Consequently it is the preferred radiation technique. Because hormone deficiencies can develop many years after radiation treatment, all individuals treated with radiation should have periodic evaluations by an endocrinologist throughout their lifetimes. Additionally, because of the tendency for craniopharyngiomas to recur, repeat MRIs or CT scans should be obtained at least once a year for the first several years after surgery or radiation therapy.

    More information on craniopharyngioma is available at Other Pituitary Tumors.

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  • Why consult an endocrinologist?

    Iatrogenic Cushing's Syndrome is generally managed by the physician prescribing the steroid hormones for the primary illness, such as asthma, arthritis, or inflammatory bowel disease. Sometimes physicians are able to decrease steroid doses by using other drugs in the treatment of these diseases.

    All of the types of spontaneous Cushing's Syndrome should be carefully evaluated by an endocrinologist (a specialist in hormonal disease) who has the knowledge and experience in choosing the correct diagnostic studies and evaluating the results. Finding the correct diagnosis often requires prolonged testing and even repetition of tests. Quick shortcuts can be misleading. Referrals for surgery or radiation should be coordinated by the endocrinologist, who will also be directly involved in managing the patient afterwards.

    Written by: Paul Margulies, M.D., F.A.C.P., F.A.C.E. Medical Director of NADF Clinical Associate Professor of Medicine, Cornell University Medical College and posted at http://www.medhelp.org/www/nadf4.htm

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  • I have been cured of my Cushing's - why don't I feel normal, 6 months after my surgery?

    This is a common question. Cushing's affects every system of the body; it causes problems gradually, particularly its effect on muscles and body fat. With Cushing's, muscles become thin and weak. It takes a long time for the body to "repair" itself, usually 9 to 12 months. It is quite common for patients to still feel weak several months after successful surgery. Also, the excess weight does not "magically" disappear - it takes time and a weight reduction diet to return to normal body weight. The important word here is: patience.

    The answer to this question about pituitary tumors was developed by Mary Lee Vance, M.D., Professor of Medicine and Neurosurgery at the University of Virginia. Dr. Vance is an endocrinologist specializing in the treatment of pituitary diseases.

    For more information from Dr Vance, see Pituitary Tumors Frequently Asked Questions

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  • Is growth hormone important in adults?

    Yes. Growth hormone (GH) does more than stimulate growth in children. In adults, growth hormone affects all aspects of metabolism and affects body composition. Adults who are growth hormone deficient may have an increased amount of body fat and decreased amount of muscle. Bone density may also be lower in adults who are growth hormone deficient. In addition to physical features of GH deficiency in adults, some patients experience symptoms of fatigue, loss of energy and social isolation. Growth hormone replacement is relatively new; it has been used in Europe for approximately 11 years and in the U.S. since 1996. Studies of GH replacement demonstrate that muscle mass increases, fat mass decreases, and after 18 months, bone mass increases; weight does not change (it is not a weight loss hormone). Growth hormone caused a preferential reduction in fat within the abdomen (visceral fat). Some patients had improvement in exercise ability and muscle strength. Questionnaires to assess GH's effects on psychological measures revealed that GH treated patients had improvement in energy level and an overall sense of well being.

    Growth hormone deficiency must be diagnosed with a stimulation test (blood test after receiving a stimulating medication). The most common stimulation tests include: insulin to lower the blood sugar, L-dopa, arginine and growth hormone releasing hormone. The maximum GH level after the stimulating medication is used to determine if a patient is growth hormone deficient.

    Growth hormone must be administered by an injection under the skin once a day. The needle used is a very tiny insulin needle (GH deficient children give themselves this injection daily). Growth hormone replacement must be monitored by assessing the clinical response, assessment of side effects and by measuring the blood IGF-1 level to determine if the dose is correct for a patient (one dose doesn't fit all when it comes to hormone replacement therapy).

    Growth hormone replacement is FDA approved for patients who have pituitary disease and who have an abnormal stimulation test. It is expensive, usually more than $10,000/year. Thus, most insurance companies require documentation of the need for this medication and the results of the stimulation test before agreeing to reimbursement.

    The answer to this question about pituitary tumors was developed by Mary Lee Vance, M.D., Professor of Medicine and Neurosurgery at the University of Virginia. Dr. Vance is an endocrinologist specializing in the treatment of pituitary diseases.

    For more information from Dr Vance, see Pituitary Tumors Frequently Asked Questions

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  • What is the goal for Medical Treatment in Pituitary Tumors?

    Any medical therapy for a pituitary tumor should reduce hormone overproduction by the tumor, and, ideally, decrease the size of the pituitary tumor so that any visual abnormality is corrected. Reduction in tumor size should improve or relieve headache associated with the tumor. Since not all pituitary tumors produce an excessive amount of a hormone or hormones, the only measure of successful medical therapy for the non hormone producing tumor is the effect on tumor size and clinical symptoms (visual problems, headache).

    The answer to this question about pituitary tumors was developed by Mary Lee Vance, M.D., Professor of Medicine and Neurosurgery at the University of Virginia. Dr. Vance is an endocrinologist specializing in the treatment of pituitary diseases.

    For more information from Dr Vance, see Pituitary Tumors Frequently Asked Questions

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  • What are the side effects of radiation?

    The most common side effect is loss of pituitary function. This may occur within a year or many years after treatment. One study reported that 50% of patients treated with conventional radiation developed deficiency of one or more pituitary hormones within 2 years of treatment. Although development of a pituitary hormone deficiency is not desirable, hormone replacement therapy is available. An uncommon side effect is damage to vision. These risks must be weighed against the risk of tumor re-growth.

    The answer to this question about pituitary tumors was developed by Mary Lee Vance, M.D., Professor of Medicine and Neurosurgery at the University of Virginia. Dr. Vance is an endocrinologist specializing in the treatment of pituitary diseases.

    For more information from Dr Vance, see Pituitary Tumors Frequently Asked Questions

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