WHAT YOU SHOULD KNOW:
- Cushing syndrome is also called hypercortisolism (hi-per-KOR-ti-sol-izm). It is where your body has too much of a hormone called cortisol. Cortisol is made in the adrenal glands, and the amount of cortisol to be made is controlled by the pituitary gland. Your adrenal glands are located above each kidney. The pituitary gland is located at the base of the brain. You are at a higher risk of having Cushing syndrome if you have a pituitary gland cancer. Using steroid medicine for a long time also increases your risk for having this syndrome. The most common symptom of Cushing syndrome is the sudden onset of weight gain. You may also have more fat in the trunk or puffiness and roundness of your face.
- Cushing syndrome is diagnosed by having a saliva (spit) test or a urine test to measure cortisol levels. Blood tests, a computerized tomography (CAT) scan, or a magnetic resonance imaging (MRI) test may also be done. Treating Cushing syndrome depends on what caused it, and the problems caused by the condition. Treatment may include changing your steroid dose, surgery, radiation, or chemotherapy. If the cause of Cushing syndrome is discovered, and treatment begins as soon as possible, Cushing syndrome can be cured in some people.
AFTER YOU LEAVE:
Take your medicine as directed.
Call your primary healthcare provider if you think your medicine is not helping or if you have side effects. Tell him if you are allergic to any medicine. Keep a list of the medicines, vitamins, and herbs you take. Include the amounts, and when and why you take them. Bring the list or the pill bottles to follow-up visits. Carry your medicine list with you in case of an emergency.
- Your caregiver may change how much steroid medicine you take to treat other conditions.
- If you are using chemotherapy, take your medicine exactly as you are told.
Ask for information about where and when to go for follow-up visits:
For continuing care, treatments, or home services, ask for more information.
- Manage your stress: Stress may slow healing and lead to illness. Learn ways to control stress, such as relaxation, deep breathing, and music. Talk to someone about things that upset you.
- Good nutrition for your heart: Get enough calories, protein, vitamins, and minerals to help prevent poor nutrition and muscle wasting. You may be told to eat foods low in cholesterol or sodium (salt). You also may be told to limit saturated and trans fats. Do eat foods that contain healthy fats, such as walnuts, salmon, and canola and soybean oils. Eat foods that help protect the heart, including plenty of fruits and vegetables, nuts, and sources of fiber. Ask what a healthy weight is for you. Set goals to reach and stay at that weight.
- Cushing syndrome can cause blood sugar changes. A dietitian may work with you in choosing the best foods to control your blood sugar. You may need to eat certain amounts of these foods at specific times during the day. Ask caregivers how your favorite foods may fit into your diet.
For support and more information:
Cushing syndrome is a life-changing condition for you and your family. Accepting that you have Cushing syndrome is hard. You and those close to you may feel scared, angry, or sad. These are normal feelings. Talk to your caregivers, family, or friends about your feelings. You may also want to join a support group. This is a group of people who also have Cushing syndrome. Contact the following for more information:
- National Digestive Diseases Information Clearinghouse (NDDIC)
2 Information Way
Bethesda , MD 20892-3570
Phone: 1- 800 - 891-5389
Web Address: www.digestive.niddk.nih.gov
- Cushing's Support and Research Foundation
65 E India Row, Suite 22B
Boston , MA 02110
Phone: 1- 617 - 7233674
Web Address: http://csrf.net/
CONTACT A CAREGIVER IF:
- You cannot make it to your radiation or chemotherapy visit.
- Your pain is worse or does not go away even after taking your medicines.
- Your symptoms are getting worse.
- You have questions or concerns about Cushing syndrome, medicine, or care.
SEEK CARE IMMEDIATELY IF:
- You are having trouble staying awake or are confused.
- You have a very bad headache, or you feel dizzy.
- You have blurred or double vision.
- You have chest pain.
- Your breath has a "fruity" sweet smell.
- Your breathing is shallow.
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The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.