"I am an adult who is panhypopituitary (PHP) (no endocrine function), including growth hormone deficiency (GHD). This was caused from TBI when I was 18 & hit by a drunk driver. It was 1967, and I spent most of my adult life never knowing another person with my condition. It is the "invisible illness" and most of my friends & family did not understand my challenges.
The MAGIC Foundation changed everything for me when I went to my first Adult Convention for people who are PHP & GHD. I was surrounded by people who understood the challenges and were willing to listen, share and support one another. The MAGIC Foundation is so well respected that it is able to enroll outstanding Endocrinologists to speak at the conventions. I have gained so much information & knowledge to improve my life. I try to pass it on.
The MAGIC Foundation offers and monitors Facebook Groups where people can get support from the experience of others. Magic continues to improve my life and the lives of both children and adults with endocrine disease. Thank you MAGIC!" Anonymous
Adults Need Growth Hormone Too!
Almost everyone understands that children need growth hormone to grow taller. For children with short stature and are not growing due to underlying growth hormone deficiency, this medication is available for treatment to promote growth and achieve normal height. Since the 1990s, it has also been discovered that adults can develop growth hormone deficiency and the need for growth hormone treatment for a number of very important reasons has now been established. Thus, it appears that adults with growth hormone deficiency do indeed need growth hormone too!
Where Does Growth Hormone Come From?
Growth hormone is a small protein produced by the pituitary gland, a small dime-sized gland that extends from the base of the center of the brain located right behind the eyes. In addition to growth hormone, the pituitary gland also produces a number of other important hormones as well, such as prolactin, thyroid-stimulating hormone, luteinizing hormone, follicle-stimulating hormone, adrenocorticotropic hormone, oxytocin, and vasopressin. The part of the brain just above the pituitary called the hypothalamus produces two hormones called growth-hormone-releasing hormone and somatostatin that plays an important role in controlling the amount of growth hormone released by the pituitary.
The amount of growth hormone released by the pituitary over our lifetime changes with increased amounts released during childhood, especially during the pubertal growth spurts, and decreasing amounts, as we get older.
When growth hormone is produced by the pituitary gland, it is released into the bloodstream that then stimulates the liver primarily to release another hormone called insulin-like growth factor-I or simply known as IGF-I. IGF-I can be measured in blood by taking a blood sample. As IGF-I levels do not fluctuate greatly throughout the day for an individual person as much as growth hormone, IGF-I is used by physicians as a screening test to assess for growth hormone deficiency or excess in conditions such as acromegaly and gigantism. Both growth hormone and IGF-I acts on many tissues in the body, including brain, bone, fat and muscles, to name a few.
What Does Growth Hormone Do?
Growth hormone helps to regulate body composition, body fluids, muscle and bone growth, mental function, and possibly heart function. On the other hand, deficiency of growth hormone in children is easy to recognize. Children with low levels of growth hormone have difficulty growing without treatment and remain short. In adults, growth hormone deficiency is not easy to detect since adults have achieved adult height and have fused their bones, thereby preventing further growth in height. The deficiency of growth hormone in adults can be most appreciated by assessing the body composition. These important parts of our bodies are not nurtured properly in growth hormone deficiency, resulting in an abnormal metabolism. With this deficiency, fat tends to be deposited more easily, especially around the central part of the abdomen. Since growth hormone can affect muscles, they also change for the worse, which means there is less muscle strength and less ability to exercise. Bones, too, are affected by becoming weaker with low bone mineral density, increasing the risk of osteoporosis as we get older. This combination of more fat, less muscle and less bone mineral density represents the abnormal body composition changes as the result of growth hormone deficiency affecting adults.
Adults with growth hormone deficiency also experience adverse effects on cholesterol and glucose metabolism. These changes result in a higher overall cholesterol level in blood, which is undesirable. The “good” cholesterol also changes. We want this “good” cholesterol level to be as high as possible. This good cholesterol (also referred to as HDL cholesterol) changes to a lower level as the result of growth hormone deficiency, which is the opposite of what we want to be healthy. In addition, because of the increased risk central fat deposition associated with adult growth hormone deficiency, the risk of developing diabetes and heart disease increases significantly as well.
What Are Some Symptoms of Growth Hormone Deficiency in Adults?
Adults who develop growth hormone deficiency may report central weight gain, difficulty to lose weight, dry skin, fatigue, and often do not feel their usual selves. Most notice a decrease in their physical energy level and endurance for exercise. Some may avoid social contact or avoid socialization with their friends and family members, and may develop anxiety and depression. Other people with growth hormone deficiency think they feel normal, but do not remember the way they felt before they developed the growth hormone deficiency. These people may feel a dramatic improvement only after growth hormone therapy is started.
Causes of Growth Hormone Deficiency in Adults
Most children who develop growth hormone deficiency do so because the hypothalamus, for unknown reasons, fails to function and does not produce sufficient amounts of growth-hormone-releasing hormone to stimulate the pituitary gland to release growth hormone. There may not be a visible cause of pituitary damage on MRI in most children with growth hormone deficiency. This deficiency may continue into adulthood. Adults, however, who develop growth hormone deficiency usually do so because of some damage to the pituitary gland and hypothalamus. This damage results in an inability of the pituitary gland to make growth hormone in sufficient amounts needed by the body. The most common cause of pituitary and hypothalamus damage in adults is a tumor in the pituitary gland and hypothalamus. Either the tumor itself, or the treatment in the form of surgery to remove the tumor or radiation therapy of the tumor can cause adult growth hormone deficiency. Other recently described conditions that can cause adult growth hormone deficiency include head injury, stroke, bleeding in the base of the brain and infections to the brain, such as meningitis. Some adults may also have persistent under-active hypothalamic drive (activity) as a cause of growth hormone deficiency similar to the most common reason for children to develop low growth hormone, but this is rare.
What Methods Are Used to Detect and Confirm Growth Hormone Deficiency?
Your doctor will choose an appropriate test to detect and confirm if you have growth hormone deficiency or not. Since measuring growth hormone in the blood is hard to interpret because growth hormone secretion fluctuates throughput the day and often can be low in normal individuals, a low level in blood does not confirm growth hormone deficiency. Your doctor will choose a stimulation test that will cause growth hormone to be released by your pituitary gland into your bloodstream. By measuring your blood at intervals after the stimulation using a medication, your responses to the stimulus can be obtained by measuring growth hormone levels in the blood. In normal individuals there is a rise in blood growth hormone levels after the stimulus but in deficient individuals, there is either no rise, or a minimal rise, which will then confirm that you are growth hormone deficient. The commonly used medications to stimulate growth hormone secretion (growth hormone stimulation tests) include insulin and glucagon. In December 2017, the United Stated Food and Drug Administration has approved the use of a medication called macimorelin, which can be taken by mouth, as the test that can be used to test for adult growth hormone deficiency. All of these growth hormone stimulation tests requires you to be fasted and an IV line to be placed in your arm for and the multiple blood draws for growth hormone measurement to be performed. Your doctor will choose one of these that best fits your situation.
How is Growth Therapy Administered?
Growth hormone is administered by injection. It is administered daily underneath the skin into fat tissue. Most individuals give it to themselves in the fat in the lower abdomen. Previously, needles and syringes were used that is similar to those used by diabetic patients. Nowadays, many easy-to-use pen delivery devices are available to administer growth hormone more reliably and some pen devices can hide the needle so well that you cannot even see it when you are giving the injection. You will need a special “sharps container” for disposal of the needles. Your doctor will calculate the dose of growth hormone appropriate for you. The dose may change depending upon your responses and blood tests taken to monitor therapy. It is important to note that growth hormone cannot be administered orally because it is digested in the stomach before it can be absorbed into the bloodstream.
What Symptoms Suggest Taking Too Much Growth Hormone?
If you are receiving too much growth hormone, you may develop side-effects such as swelling of the ankles, aching in your joints, pain in your hands or rise in blood glucose and blood pressure. If these symptoms do occur, you should notify your physician immediately. Usually side-effects subside when your dose of growth hormone is decreased or the treatment is stopped temporarily. Once the side-effects have resolved after stopping treatment, you can discuss with your physician to see if you can resume at a lower dose. It is important to note that not every patient feels better immediately being on growth hormone treatment, which is why you should be on growth hormone for at least twelve to eighteen months as your doctor slowly increases the dose to the right level for you.
Adults need growth hormone all of our lives, not only as children for growth purposes. Without growth hormone as adults, there is an increased risk of developing abnormal body composition, increased central fat deposition, increased risk of cardiovascular disease and diabetes, increased risk of low bone mineral density, and reduced physical and psychological energy and well-being. Growth hormone replacement in adults with growth hormone deficiency often improves most, but not all, symptoms associated with this condition, and should be continued lifelong, if possible.
Growth Hormone Deficiency Can Affect Your Life Quality
If you have been diagnosed with growth hormone deficiency, you may experience a number of different physical and emotional symptoms. Patients often report feeling low in mood, tired, listless, easily fatigued and having a lack of motivation. Some individuals also report feeling anxious, depressed, irritable, losing interest in sex and a pervasive sense of gloom and pessimism about their lives. Because of these effects, adults with growth hormone deficiency may tend to avoid contact with others, show signs of stress in their marriage and experience a gradual decrease in their productivity at work resulting in some being laid off from work. Quality of life begins to decline gradually and the affected individual often suffers in silence. This brochure is provided to help you understand these feelings and what actions you can take to improve your life.
How Growth Hormone Can Cause Moods and Emotions to Change
Although we refer to it as “growth” hormone, the hormone and insulin-like growth factor-I (IGF-I) that it stimulates actually have many other functions besides helping growth to occur. Growth hormone is a powerful brain hormone that is believed to play an important role in stimulating and controlling areas of the brain that regulate moods and emotions. Certain chemicals in the brain, called neurotransmitters, are dependent on the effects of growth hormone and IGF-I to help them carry their messages to other brain centers. If growth hormone is deficient, these functions may not occur appropriately and the result can be uncontrolled decline in psychological functioning. Individuals may feel anxious, depressed or worried for no apparent reason when this happens, and this may cause changes in behavior or a decline in social functioning. Negative and sad feelings may dominate your mood and positive or joyful feelings can be dampened. An affected individual could feel unable to enjoy life and lack the motivation to make change in their circumstance. It is important to remember that these emotional changes are not usually directly related to actual life events and therefore are difficult to anticipate. Research has shown that many patients suffer these symptoms privately as they may not relate these symptoms to being caused by growth hormone deficiency and some may perceive these symptoms as a social stigma resulting in them not reporting to their doctors. This is unfortunate because there are several treatments available to help manage these problems.
Growth Hormone Deficiency in Childhood vs. Adulthood
Children who are growth hormone deficiency often grow up with problems related to being small, feeling unhappy with their self-image, lacking in self-confidence, having few friends, and, perhaps also not doing well in school both in terms of academically and socially. Many short children are teased, bullied and are even called cruel nicknames. These difficulties can have a huge negative impact on self-esteem and social skills, and if these effects are carried into adulthood, quality of life may be more complex and therefore difficult to change. In contrast, adults who develop growth hormone deficiency later in life may be surprised by their emotional changes and psychological symptoms, but because of their previous life experience and maturity, they are better prepared to find a solution. In either case, consultation with your doctor can lead to appropriate treatment options.
The Special Problems of Short Stature
Short stature in childhood may be corrected by growth hormone treatment, but above average height is not achieved in all patients. Feeling "short" and therefore different from others may lead to secondary adjustment problems, which can compound the biological effects of growth hormone deficiency mentioned earlier. If a poor self-image develops, lowered self-esteem, anxiety, pessimism or even depression may arise. Common signs of this are: feeling isolated from others, "left out" or shunned, becoming sarcastic or cynical, being overly sensitive to criticism, or lacking ambition and drive. No one has all these symptoms at the same time, but any one of them, or a combination of such symptoms indicates you should seek help, either from a counselor or your doctor.
What Can Be Done to Help You
Once your diagnosis is confirmed, you should feel entirely comfortable speaking with your doctor about any problems you have regarding your feelings or emotions. In some instances it may be that growth hormone replacement treatment will make a significant difference in your sense of well-being, and nothing further is needed. In others, medic
ation to control anxiety or depression can be beneficial. Certain forms of counseling also alter anxiety and depression by modifying negative and dysfunctional beliefs and thought patterns. This is called cognitive-behavior and is usually carried out by a specially trained psychologist. All these options can be discussed with your doctor who will help you make the best decisions with your treatment plan.
The Transition from Child to Adult
Growth Hormone Therapy
Growth hormone (somatotropin), a principal stimulator of body growth, is produced by the pituitary (or master) gland, a small structure located at the base of the brain. Insufficient production of growth hormone in children causes growth to be slow. Because growth hormone deficiency produces striking effects in children and has been a recognized condition for many years, we usually associate the term growth hormone deficiency with children and with the process of statural growth. Growth hormone, however, is also secreted in adult life, and adults need GH to maintain health. Adults who produce insufficient growth hormone also are designated as growth hormone deficiency, or can be called adult growth hormone deficiency.
Causes of Growth Hormone Deficiency
Growth hormone deficiency in some adults is due to the continuation of a process that began in infancy or childhood, or it may have its onset after adulthood is reached. The most common form of growth hormone deficiency beginning early in life is termed "idiopathic", meaning that the cause is not known. Known causes beginning in childhood include developmental defects in the region of the pituitary gland, genetic abnormalities with the production of growth hormone, damage to the pituitary area resulting from tumor, surgery, irradiation, etc. The most common causes of adult-onset growth hormone deficiency are tumors in and around the pituitary gland and hypothalamus. Such tumors may compress and damage the remaining pituitary gland, or growth hormone deficiency may follow efforts to surgically remove the tumor. Other causes of damage to the pituitary gland in adults include irradiation, infection, bleeding in the skull base, bleeding into the tumor and head injury.
The Adult Who Was Growth Hormone Deficient During Childhood
In the many decades that growth hormone has been used as treatment, the emphasis has been on treating the short stature in GH deficient children. For the most part, these patients have been led to believe that the only purpose of growth hormone therapy was to promote their growth so that they would achieve an acceptable adult height and that therapy would not be needed once they reached their final adult height. Experience, however, has led to the conclusion that a substantial number of adults who were GH-deficient during childhood need to continue GH therapy in adult life due to persistence of growth hormone deficiency.
Several findings have led to this conclusion:
When growth hormone deficiency therapy is stopped, the young GH-deficient adult tends to gain weight and become relatively obese. This excess of body fat tends to accumulate around the abdomen.
This relative deficiency of muscle mass results in diminished strength and physical performance, changes that may be manifested as decreased ability to perform tasks such as lifting heavy loads or to sustain physical tasks for long periods of time. Adults with growth hormone deficiency have impaired ability to consume oxygen and expend their body energy, both at rest and at work.
Adults with growth hormone deficiency also may have lower mineral content in their bones, predisposing them to fractures in their later years in adulthood. All of us lose bone mineral and have increased tendency to fracture our bones as we age, but this natural process may be accelerated by GHD. Additionally, if the growth hormone deficient adult had insufficient growth hormone during childhood, when bones normally accumulate mineral, he/she is likely to begin adult life with low bone mineral content. This, superimposed on the loss of mineral during adulthood, eventually results in lower-than-normal bone mineral content and a greater predisposition to fractures.
Blood lipid profiles in adults with growth hormone deficiency are such that they are likely to be predisposed to develop atherosclerosis in later years of adulthood. Their blood levels of total cholesterol, low-density lipoprotein cholesterol, and triglycerides are higher than individuals who have normal growth hormone secretion, suggesting that these findings are significant in contributing to the shorter lifespan seen in adults with hypopituitarism (growth hormone deficiency associated w
ith deficiencies of other pituitary hormones). This is because, despite treatment of the thyroid, adrenal and gonadal hormones, the excess death rate is due mainly to cardiovascular problems of the type commonly resulting from abnormal lipid profiles.
Young adults who were growth hormone deficient during childhood may have signs and symptoms of impaired physical and psychological well-being. These include feelings of depressed mood, emotional instability, social isolation, anxiety, low self-esteem and reduced vitality.
Treatment of the Growth Hormone Deficient Adult Who Had Growth Hormone Deficiency in Childhood
Although children who have growth hormone deficiency may continue to be growth hormone deficient in adulthood, the capacity of some patients to secrete growth hormone improves over time. Some patients, therefore, will not need growth hormone therapy in adult life. This is why it is very important that as each GH-deficient child that reaches adulthood, growth hormone treatment should be stopped and GH stimulation testing performed at least 1 month after stopping growth hormone to determine the need for continuing therapy in adulthood. The extent and nature of testing needed for this purpose will vary from one patient to another. During this time, the patient may switch over from seeing a pediatrician to seeing an adult endocrinologist. This time is crucial for the pediatrician to prepare the patient to transition over his/her care with an adult endocrinologist.
If treatment is needed, a variety of beneficial effects can be anticipated:
Effects on Body Composition and Bone Mineral Content
Growth hormone therapy may decrease body fat, with the greatest reduction occurring in the region of the abdomen. Concurrently, the reduced lean tissue mass is increased by treatment with growth hormone. This change is reflected in large part by improvement in muscle mass. The improvement in body composition may help in reducing the risk of developing future diabetes. Although improvements in bone mineral density would be an anticipated effect of growth hormone replacement therapy, systematic studies have not shown that this occurs. This may be because bone changes can take a long time to observe. Therefore, longer periods of observation are needed to assess changes in bone mineral density.
Effects on Physical Performance
Probably because of its beneficial effects on skeletal muscle, heart muscle and metabolism, treatment with GH improves exercise performance, oxygen consumption and cardiac output.
Effects on Blood Lipids
The blood lipid profile has been shown to improve with growth hormone therapy, especially when combined with a statin. Specifically, total cholesterol and low density and lipoprotein cholesterol are reduced and high-density lipoprotein cholesterol (good cholesterol) is increased. The extent to which these changes decrease the development of atherosclerosis are not yet known.
Effects on Psychological Well-Being
One of the striking effects of growth hormone therapy in adults with growth hormone deficiency is the improvement in psychological well-being reported by these patients. Some, but not all, patients experience an improvement in their psychological well-being. Improvements in mood and in the level of perceived psychological distress also have been documented.
Treatment with growth hormone requires that the hormone be injected daily into the fat tissue beneath the skin usually at bedtime. This is made relatively simple by the need for small volumes of growth hormone and the availability of fine, small-bore needles with a pen device. In the hierarchy of treatments used for patients with various illnesses, growth hormone is relatively safe. Over 20 years of experience with growth hormone therapy in adults has uncovered few adverse effects of the hormone. In adults who are treated with a smaller weight-related dose, edema (collection of fluid in tissue) and discomfort in the joints are sometimes reported. Decreasing the dosage temporarily can relieve these. Because growth hormone antagonizes the action of insulin, high growth hormone doses can raise blood glucose levels, although this has not proven to be a significant problem in adults if blood glucose levels are monitored and lower growth hormone doses are used. Because growth hormone can cause tumors to grow, this raises the concern that long-term growth hormone treatment might promote the development of tumor growth. These concerns, however, have been unfounded as it has not been observed to be the case with long-term growth hormone therapy in adults.
Adults still produce and need growth hormone. It is just that they do not need as much growth hormone as children.
Adults who are deficient in growth hormone accumulate excess fat, have deficient lean tissue, have lower bone mineral content, have an unfavorable blood lipid and glucose profile, and experience undesirable psychological effects.
Treatment with growth hormone reverses/attenuates many of the effects of growth hormone deficiency, and may lead to better physical performance and a healthier psychological status.
Use of growth hormone in adults and children for over 20 and 40 years, respectively, indicate that it has a high degree of safety.
Evaluation Process of Adults with Growth Hormone Deficiency
You have been referred to an endocrinologist, a doctor who specializes in the diagnosis and treatment of disorders of the endocrine glands. Endocrine glands release chemicals into the blood, which tell parts of the body to do certain jobs. These chemicals are referred to as hormones. Endocrine disorders can be in the form of too little or too much hormones being produced. A deficiency exists when there is not enough of a hormone in the body. In order for your doctor to make an accurate diagnosis, testing may be necessary, and some of the testing can be quite complex. This section was written to help you and your family understand the evaluation process of hormone deficiencies.
Control of Hormones/Hormone Deficiency
The hypothalamus controls the pituitary gland; both are located in the brain. The pituitary gland releases or controls many hormones in the body. The hormones are released in very small amounts into the bloodstream and then travel to parts of the body (referred to as target organs) to perform a specific job. These hormones control many of the body's functions, which are the following: Thyroid Stimulating Hormone (TSH) turns the thyroid gland "on" in order to control your metabolism. Adrenocorticotrophic hormone (ACTH) stimulates cortisol production to assist your body in daily function and stress. Vasopressin assists in the salt and water regulation of the body. Gonadotropins (FSH, LH) stimulate the ovaries (in women) or testes (in men) to release "sex" hormones (estradiol or testosterone). Growth hormone is released from the pituitary gland to cause growth in children and affects fat metabolism, bone density, lipid metabolism, and muscle in children and adults.
Deficiencies of these hormones may occur alone or in combination with one or more other hormone deficiencies. The hormone(s) deficiency may be congenital, resulting from a defect in the brain. The deficiency may also be acquired, stemming from the damage to the brain after a severe head injury, serious illness (such as meningitis or encephalitis), brain tumor and/or radiation. Sometimes no cause for the hormone deficiency can be identified.
Evaluation and Testing
In order to confirm or determine the possibility of hormone deficiencies your doctor will perform an examination and ask you some questions. Past records may have to be reviewed. Screening blood tests will usually be done. These blood tests will check the secretion of the pituitary hormones and their target organs.
Possible tests that may be done are listed:
ACTH/cortisol (to test adrenal function)
Free T4/TSH (to test thyroid function)
FSH/LH and estradiol or testosterone (to test stimulation ability of the ovaries or testes)
IGF-I (an indirect measure or screening test for growth hormone production)
Electrolytes (measures water & salt balance)
You may need to have a picture of the brain; this is done by an MRI scan (a CT is done for those who have a pacemaker and cannot undergo an MRI scan). These tests are not painful but you will have to hold still for approximately one hour during the test.
If there is a possibility that you have growth hormone deficiency, more testing will have to be performed. Growth hormone is secreted by the pituitary gland in quick bursts and does not last long in the blood, so checking a single blood sample for growth hormone will not be helpful. Deep sleep, vigorous exercise, and certain drugs are known to stimulate the secretion of growth hormone. The amount of growth hormone in the blood is measured by taking blood samples over a period of time. This is done by performing a "stimulation test." This refers to drawing baseline hormone levels, stimulating growth hormone release by giving a drug, drawing intermittent growth hormone levels for one to four hours. Your doctor will determine the specifics of the tests, such as type of drug, length of test, and amount of the samples.
Once the diagnosis of adult growth hormone deficiency is confirmed, your doctor will need to make sure you are on adequate hormone replacement for other hormone deficiencies prior to stimulation testing. You will be given instructions. You should not have anything to eat or drink, except for water, after midnight the night before the test. You should have minimal activity before the test (no exercise that morning). An indwelling venous line (IV) will be started and baseline hormone levels will be drawn. You will be given a medication. Your doctor or nurse will review your medications, the medication to be used and its effects. Growth hormone levels will be drawn intermittently from the IV at specified times for a period of two hours. If the IV stops working during the test, it is important that it be restarted so the samples may be obtained at the specified times.
The purpose of the testing is to determine if you are growth hormone deficient and/or eligible for growth hormone therapy. In order to start growth hormone treatment you will have one, sometimes two simulation tests to be performed. Your doctor will decide the number of tests and will interpret the test results for you. It may take several weeks for your doctor to receive and review the test results. You should discuss the results and the possibility of growth hormone treatment with your doctor.
Your doctor will prescribe growth hormone replacement and other hormone replacement if you are deficient in growth hormone and other pituitary hormones. Remember that each hormone has a specific function in your body. Replacement medication is very important, and so is your compliance with the medications. If you have any questions don't hesitate to call your doctor, nurse, or the MAGIC Foundation for resources.
Contributing Medical Specialist:
Kevin Yuen, M.D.
Professor of Medicine
Medical Director, Barrow Pituitary Center and
Barrow Neuroendocrinology Clinic