What are growth disorders?
Growth hormone (GH) is secreted from the anterior pituitary gland, which is located at the base of
the brain. GH signals tissues to grow the liver and other tissues to release Insulin-like Growth
Growth disorders are usually due to the body’s inability to make or use GH. Many conditions causing growth disorders are present at birth, and are the result of genetic mutations. Growth disorders can also be acquired as the result of pituitary damange from trauma, radiation, infection, or tumors. Sometimes, growth hormone deficiency (GHD) or short stature responsive to GH treatment may have no known cause and improve after childhood.
Short stature may occur whether or not there is growth hormone deficiency. Examples include
Idiopathic Short Stature and Small for Gestational Age. Some congenital causes of short stature with
or without growth hormone deficiency include Turner Syndrome, Russel-Silver Syndrome, Prader-Willi
Syndrome, Noonan Syndrome, and SHOX deficiency.1
Growth hormone deficiency can be treated with injections of growth hormone, usually given daily. Treatment usually lasts until growth stops. In patients with continued growth hormone deficiency treatment continues into adulthood.
Growth hormone insensitivity can be a result of IGF-1 deficiency. This can cause severe short
stature, disproportionate body features, and developmental abnormalities. It can be treated with
mecasermin, which is a twice daily injection.2
How common are growth disorders?
Short stature occurs in about 2.5% of children. Growth hormone deficiency is diagnosed
occurs in approximately 1:4,000 to 1:10,000 children. Adult GH deficiency affects approximately
1:100,000 people per year, with approximately 6,000 new adult cases being diagnosed each year in the
Questions about your growth hormone disorder therapy?
You can reach the Accredo growth hormone disorders care team, anytime, day or night, seven days a week.
24-hour Customer Service Center
1. Cook, David, et al. "American Association of Clinical Endocrinologists medical guidelines for clinical practice for growth hormone use in growth hormone-deficient adults and transition patients-2009 update." Endocrine practice (2010).
2. Human Growth Foundation. (last updated 2015) Epidemiology of Growth Hormone Deficiency. Available at: http://hgfound.org/resources/adult-growth-hormone-deficiency Accessed December 3, 2016.
3. Bamba, Vaneeta. Pediatric Growth Hormone Deficiency. Medscape. Last Update November 15,2016. http://emedicine.medscape.com/article/923688-overview Accessed February 19, 2018.
What are the symptoms of growth hormone disorders?Childhood-onset Growth Hormone Deficiency:1 2
- Immature facial features
- Slow tooth eruption
- Delayed lengthening of long bones
- Fine hair
- Poor nail growth
- Truncal obesity
- High pitched voice
- Bouts of hypoglycemia
- Low growth velocity
- Delayed puberty
- Low birth weight
- Relative increase in fat mass (especially abdominal and visceral)
- Decrease in muscle mass
- Decreased energy levels
- Anxiety and/or depression
- Increase in LDL cholesterol and triglyceride levels
How is it diagnosed?
Growth hormone deficiency is diagnosed using bone age scans, lab tests and MRI’s. Children with GHD
have delayed bone age. The wrist or hand is accessed to see how much growth is left. Laboratory
tests include IGF-1 level, IGFBP-3 level (insulin growth factor binding protein-3), thyroid hormone
level, and insulin tolerance test (ITT). The MRI is performed to rule out a tumor or other
Other considerations with GHD are growth charts to determine the growth percentiles and growth velocity (cm/year). Medical history of the patient and their family is accessed to see if there is a history of hypothyroidism, chromosomal abnormalities, craniofacial disorders, and intrauterine (in utero) growth restriction or infection.
Sometimes, parents try to get growth hormone for their children to grow a “few more inches” even if their child does not meet the requirements for treatment. Or, adults will try to be prescribed GH to “lose some weight” or “get more energy.” These are not valid diagnoses for treatment, and can lead to the abuse of GH. In some states, growth hormone is scheduled as a controlled substance to deter possible abuse.
1. Bamba, Vaneeta. Pediatric Growth Hormone Deficiency. Medscape. Last Update November 15,2016. http://emedicine.medscape.com/article/923688-overview Accessed February 19, 2018.
2. Rieser, Patricia A. “Pediatric Growth Hormone Deficiency. Human Growth Foundation. Last Update 2015. http://hgfound.org/resources/pediatric-growth-hormone/ Accessed February 19, 2018.
3. Cook, David, et al. "American Association of Clinical Endocrinologists medical guidelines for clinical practice for growth hormone use in growth hormone-deficient adults and transition patients-2009 update." Endocrine practice (2010).
4. Human Growth Foundation. (last updated 2015) Epidemiology of Growth Hormone Deficiency. Available at: http://hgfound.org/resources/adult-growth-hormone-deficiency Accessed December 3, 2016.
The following specialty medications are available at Accredo, a specialty pharmacy for Growth Hormone.
Growth Hormone used for growth disorders:
|Increlex® (mecasermin [rDNA origin] injection)||Ipsen|
|Norditropin® (somatropin [rDNA origin] injection)||Novo Nordisk|
|Nutropin AQ® (somatropin)||Genetech (Roche)|
|Zomacton® [somatropin for injection]||Ferring B.V.|
Growth Hormone used for other conditions:
|Serostim® (somatropin)*||EMD Serono|
|Zorbtive™ [somatropin (rDNA origin) for injection]*||EMD Serono|
*Serostim® is only indicated for HIV cachexia and Zorbtive™ is only indicated for short bowel syndrome in adult patients receiving specialized nutritional support.
Financing Your Care
Financial assistance may be available to help with your medication costs, including manufacturer and community programs. Accredo specialists are available to help find a program that may work for you.
- Genotropin® Savings Program | 800-645-1280
- Humatrope® Copay Program | 866-923-1953
- Increlex® IPSEN CARES® | 866-435-5677
- Norditropin® NordiSure™ | 888-668-6444
- Nutropin Copay Card Program | 866-688-7674
- Omnitrope® Copay Support | 877-456-6794
- Serostim® Copay Assistance Program | 877-714-2947
Life-saving specialty medication can be expensive. Learn how the Accredo teams help individuals find ways to afford the medication they need to survive in this video.
Growth Hormone Disorders Organizations
There are many organizations that support research and advocacy for Growth Hormone Disorders. See below for a few of those organizations.
- National Organization for Rare Disorders (NORD)
- Child Growth Foundation
- Human Growth Foundation
- MAGIC Foundation
- Genetic and Rare Diseases (GARD) Information Center
- NIH/National Institute of Child Health and Human Development