Growth Hormone Deficiency What is growth hormone deficiency? 1,2 Growth hormone deficiency is when your body doesn t make enough growth hormone. Growth hormone is one of many hormones made by the pituitary gland. The pituitary gland is located in your brain. Hormones are chemical messengers carried through the bloodstream that cause changes in different areas of your body. In children, growth hormone is mainly responsible for development and growth. In adults, growth hormone helps to keep your muscle, bone, and fat tissues in healthy balance. Who has growth hormone deficiency and what causes it? 1-4 Growth hormone deficiency can occur at any age. Over 50,000 adults have growth hormone deficiency in the United States. Growth hormone deficiency affects between one in 4,000 to one in 10,000 children. A child may have growth hormone deficiency for many reasons. Some children are born with conditions that affect their ability to make growth hormone. Other children experience an illness or injury that damages part of their pituitary gland or another part of the brain. Many children have growth hormone deficiency for unknown reasons. Growth hormone deficiency can range from partial to complete lack of growth hormone. Some children who take growth hormone don t have a growth hormone deficiency. They may have another condition that results in slow growth. These conditions include long-term kidney disease, SHOX (short stature homeobox gene) deficiency, Turner syndrome, Prader-Willi syndrome, Noonan Syndrome, and children born small for gestational age. Adult growth hormone deficiency occurs when the pituitary gland doesn t release enough growth hormone. Common causes of growth hormone deficiency in adults are brain injury, a tumor in the pituitary gland, damage in the pituitary gland due to surgery or radiation, or prior childhood growth hormone deficiency. Page 1 of 6
What are the symptoms of GHD? 5 Children with growth hormone deficiency may have any of the following symptoms: Slow growth Low blood sugar levels Very short height Emotional symptoms like difficulty coping with their slow growth and physical development or feeling as though they are different from their peers Adults with growth hormone deficiency may have any of the following symptoms: More fat in their bodies Less muscles, strength, or energy Poor sleep Weaker bones High cholesterol levels Thin, dry skin Emotional symptoms such as depressed mood or social withdrawal What treatments are available for growth hormone deficiency? 6-12 Growth hormone deficiency can be treated with growth hormone replacement therapy. A medication called somatropin is available for use. There are many brand names for this medication including Genotropin, Humatrope, Norditropin, Nutropin, Omnitrope, Saizen and Tev-tropin. How should growth hormone be given? Growth hormone is usually given as an injection under the skin or in a muscle. It depends on which product you use. Injections are usually given every day. Taking your dose at night is preferred because it most closely matches when your body normally makes GH. Your doctor will adjust the dose of your medication based on body weight, lab tests, and any side effects you may have. Rotate the injection site of your medication every day to avoid creating a dimple or bump in one specific area. Page 2 of 6
What other conditions are treated with growth hormones? 4,13-15 Some children who take growth hormone don t have a growth hormone deficiency. They may have another condition that results in slow growth. These conditions include long-term kidney disease, SHOX (short stature homeobox gene) deficiency, Turner syndrome, Prader-Willi syndrome, Noonan Syndrome, and children born small for gestational age. Certain growth hormones are also used to treat other conditions such as Short Bowel Syndrome and HIV-associated wasting. Short Bowel Syndrome is when your bowel (or intestine) is shorter than normal or when it doesn t work as well. As a result, you can t get enough nutrients from food into your body. Growth hormone, when used with a special diet, can help your bowel take in more water, electrolytes, and nutrients from food. The growth hormone for the treatment of Short Bowel Syndrome is called Zorbtive. HIV-associated wasting is when you lose too much lean body mass or body weight without meaning to. Lean body mass is the total body weight minus body fat. Normally you use your body fat for energy. But people who have HIV tend to use their lean body mass for energy instead. If you lose too much of your lean body mass, you can become weak and your organs may fail. Growth hormone has been shown to increase weight, physical endurance, and lean body mass in people with HIV-associated wasting. The growth hormone for the treatment of HIV-associated wasting is called Serostim. What are some side effects of growth hormone? 6-12 Some common side effects include: Muscle or joint pain Headaches Pain at the injection site Water retention or swelling in the body Pain and stiffness in arms and legs Side effects usually occur when treatment is first started or when the dose is increased. Older, obese, or female adults are more likely to experience them. Side effects tend to go away after several weeks of treatment. If side effects continue, please talk to your pharmacist or doctor. If your child has knee pain, hip pain, or frequent headaches while taking growth hormone, notify his or her doctor right away. These may be signs of a more serious problem. Adults taking growth hormone who are obese, have diabetes, or have a family history of diabetes should be monitored closely. If you have cancer, you should not receive growth hormone therapy. Page 3 of 6
How long do I need to take growth hormone? 13,16,17 The length of growth hormone therapy differs in each individual child. Your child's doctor will determine how long treatment should continue. Growth hormone therapy is generally continued until a child reaches his or her adult height and has stopped growing. Some patients with growth hormone deficiency may need to continue therapy as adults to get the best results in physical development and heart function. Many adults on growth hormone therapy may be treated long term. The amount of growth hormone your body needs may change as you get older. Your doctor will monitor your needs and adjust your dose as needed. What if a dose is missed? If you miss a dose of growth hormone, take it as soon as you remember. Don t try to make up for a missed injection by giving a double dose or two doses in the same day. Occasional missed doses are not dangerous. However, it s very important to continue taking this medication every day. A child may not grow as tall if doses are continually missed. And if an adult stops treatment, symptoms of growth hormone deficiency will return in a few months. Make sure to keep track of missed injections so your doctor can monitor the therapy's effectiveness. How should growth hormone be stored? Each growth hormone product has different storage requirements. Most products need to be kept in the refrigerator. Even when kept cold, growth hormone products are stable for only a short period of time. Be sure to read the manufacturer's growth hormone medication directions regarding proper storage and use. Therapy may be continued when you travel as long as the growth hormone is properly stored. Please follow specific manufacturer directions for handling during travel. Some growth hormone products may need to be refrigerated. If the growth hormone that you are using needs to be refrigerated, you can keep it cold (but not frozen) in a cooler with ice packs. Keep the cooler with you on a plane or in a car, but don't check it as baggage when flying. Contact your pharmacist if you have questions on how to store the medication at home and when you travel. Page 4 of 6
What other resources are available? For more information, please contact the following resources: OptumRx Phone: 888-702-8423 Website: www.optumrx.com Human Growth Foundation Phone: 800-451-6434 Website: www.hgfound.org The Magic Foundation Phone: 800-3MAGIC3 Website: www.magicfoundation.org The Hormone Foundation Phone: 800-HORMONE Website: www.hormone.org References: 1. Adult Growth Hormone Deficiency General Information. The Magic Foundation Web site. http://www.magicfoundation.org/www/docs/105/adult-growth-hormone-deficiency-adults. Accessed June 29, 2010. 2. Growth Disorders Overview. The Hormone Foundation Web site. http://www.hormone.org/growth/overview.cfm. Accessed June 29, 2010. 3. Adult Growth Hormone Deficiency (AGHD). The Human Growth Foundation Web site. http://www.hgfound.org/res_aghd.explained.html. Accessed June 29, 2010. 4. Molitch ME, Clemmons DR, Malozowski S, et al. Clinical Practice Guideline: Evaluation and Treatment of Adult Growth Hormone Deficiency: An Endocrine Society Clinical Practice Guideline. J Clin Endocrinol Metab.2006; 91(5):1621-1634. 5. Growth Disorders Symptoms. The Hormone Foundation Web site. http://www.hormone.org/growth/symptoms.cfm. Accessed June 29, 2010. 6. Genotropin Prescribing Information. New York, NY: Pharmacia & Upjohn Company; 2009. 7. Humatrope Prescribing Information. Indianapolis, IN: Eli Lily and Company; 2009. 8. Norditropin Prescribing Information. Princeton, NJ: Novo Nordisk Inc.; 2008. 9. Nutropin Prescribing Information. South San Francisco, CA: Genentech, Inc.; 2006. 10. Omnitrope Prescribing Information. Princeton, NJ: Sandoz, Inc.; 2009. 11. Saizen Prescribing Information. Rockland, MA: EMD Serono, Inc.; 2007. 12. Tev-Tropin Prescriping Information. Sellersville, PA: Gate Pharmaceuticals; 2007. 13. Wilson TA, Rose SR, Cohen P, et al. Update of guidelines for the use of growth hormone in children: the Lawson Wilkins Pediatric Endocrinology Society Drug and Therapeutics Committee. J Pediatr. 2003; 143:415-21. 14. Serostim Prescribing Information. Rockland, MA: EMD Serono, Inc.; 2007. 15. Zorbtive Prescribing Information. Rockland, MA: EMD Serono, Inc.; 2009. Page 5 of 6
16. Cook DM, Yuen KC, Biller BM, et al. American Association of Clinical Endocrinologist medical guidelines for growth hormone use in growth hormone deficient adults and transition patients - 2009 update. Endocr Pract. 2009;15(Suppl 2):1-29. 17. Growth Hormone Research Society. Consensus guidelines for the diagnosis and treatment of growth hormone (GH) deficiency in childhood and adolescence: summary statement of the GH Research Society. J Clin Endocrinol Metab. 2000;85(11):3990-3. The information in this educational handout doesn t substitute the medical advice, diagnosis, or treatment provided by your doctor. Always seek the help of your doctor or a qualified health provider for any questions about your medical condition. 2012 OptumRx, Inc. Page 6 of 6