Hypopituitarism

Hypopituitarism occurs when the anterior (front) lobe of the pituitary gland loses its ability to make hormones. The resulting symptoms depend on which hormones are no longer being produced by the gland.

The good news is that treating the underlying condition that’s causing your child’s hypopituitarism often leads to a full recovery.

• Hypopituitarism is also called an underactive pituitary gland.
• The loss may be partial or total.
• Because the pituitary gland affects the other endocrine organs, symptoms and effects of hypopituitarism may be gradual, or sudden and dramatic.
• The most common pituitary hormone deficiency is growth hormone deficiency.
• Hypopituitarism is rare in children.
• Its various symptoms can usually be effectively controlled with medication.

Symptoms will vary depending on two things: which hormones are lacking and your child’s age. Symptoms that newborn babies may have include:

• A small penis
• Jaundice (a condition characterized by yellowing of the skin)
• Evidence of hypoglycemia (low blood sugar), such as sluggishness, jitteriness or seizures
• Excessive amounts of urine

Older infants and children may have these symptoms:

• Short stature and slow growth (children who fall off their growth curve in height)
• Weight gain that’s out of proportion to growth
• Absent or delayed puberty
• Delayed tooth development and delayed tooth eruption
• Increased thirst and urination
• Fatigue

Because the symptoms of hypopituitarism may resemble other conditions or medical problems, you should always consult your child's physician for a diagnosis.

Hypopituitarism in children may be caused by:

• A genetic condition that affects the development of either the pituitary gland or the hypothalamus (a part of the brain that sends signals to the pituitary)
• Pituitary tumors or other tumors that infringe on either the pituitary or the hypothalamus
• Radiation to the head
• A head injury
• An infection
• An autoimmune process

Hypopituitarism can also be idiopathic, meaning that no exact cause can be determined.

At the appointment, it can be easy to forget the questions you wanted to ask. It’s often helpful to jot them down ahead of time so that you can leave the appointment feeling like you have the information you need.

If your child is old enough, you may want to suggest that she write down what she wants to ask her health care provider, too.

Some of the questions you may want to ask include:

• What’s causing my child’s hypopituitarism?
• How serious is this condition overall?
• What are the most common treatment options?
• How long will my child have to be on medication?
• Are there any side effects or potentially dangerous risks to treatment?

When your child has hypopituitarism, indicating multiple pituitary hormone deficiencies, tell-tale symptoms alone may help your child's physician make a diagnosis. In addition to a complete medical history and physical examination, other diagnostic procedures may include:

• Blood tests to measure hormone levels
• X-rays of the hand and wrist to determine bone age
• Magnetic resonance imaging (MRI) of the head, which uses a combination of large magnets, radiofrequencies and a computer to produce detailed images of organs and structures within the body

After we complete all necessary tests, our experts meet to review and discuss what they have learned about your child's condition. Then we will meet with you and your family to discuss the results and outline the best course of action.

A diagnosis of hypopituitarism is a starting point for long-term healing: Now that your child's condition has been positively identified, your child's doctor will begin the process of returning your child to good health. From your very first visit, you'll work closely with a team of professionals who are committed to supporting your entire family's journey through treatment.

Treating hypopituitarism depends both on its cause and on which hormones are missing. The goal of treatment is to restore normal levels of hormones. Treating the underlying condition that's causing your child's hypopituitarism often leads to a full recovery.

Since your child's body is unable to make some or all of these missing hormones, life-long hormone replacement therapy is necessary. Replacement therapy needs to be monitored and adjusted, but the extent of your child's pituitary deficiency will determine how often he will need to see his doctor.

• Growth hormone is replaced with man-made growth hormone that's administered by an injection.
• Adrenocorticotropin deficiency results in cortisol deficiency, which is replaced with a glucocorticoid, generally in pill form taken two to three times a day throughout your child's life. If your child has a fever, serious injury, or needs surgery, the dose is increased temporarily and the medication may be given more often. If the medicine cannot be taken orally in an emergency, it must be injected or given rectally.
• Thyrotropin (TSH) deficiency results in thyroid hormone deficiency, which is replaced with levothyroxine. It is available in pill form and is taken daily throughout your child's life.
• Gonadotropin deficiency requires the replacement of estrogen or testosterone, timed with the onset of puberty. Adolescent girls are given estrogen replacement by patch (applied weekly or twice weekly) or pill (taken daily); progesterone is added after about two years. These hormones mimic the way the ovaries would produce hormones and will generate a menstrual period at the end of each cycle. After periods start, sometimes girls change their treatment to oral contraceptive pills. Males are given testosterone replacement by an injection every two to four weeks; by a gel applied to the shoulders, upper arms, and/or abdomen; or by patch.
• Antidiuretic hormone(ADH) or vasopressin is replaced with desmopressin (DDAVP), which can be administered by tablet or inhaled through the nose.

While there are many potential side effects, researchers generally agree that hormone replacement therapy is safe and effective.

Your child will be cared for by knowledgeable physicians who’ve devoted their careers to understanding this condition. We treat children with hypopituitarism in our Division of Endocrinology. For these children, our dedicated team of doctors, nurses, and other caregivers offer hope for a healthier future.

You may have a lot of questions when your child is diagnosed with hypopituitarism. We've tried to provide some answers to those questions on this site, but there are also a number of other resources to guide you and your family through diagnosis and treatment.

Patient education: From the first office visit, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have. They will also reach out to you by phone, continuing the care and support you received while at Children's.

Parent to parent: Want to talk with someone whose child has been treated for hypopituitarism? We can often put you in touch with other families who have been through the same treatments that you and your child are facing, and can share their experience .

Social work: Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such as stresses relating to hypopituitarism and dealing with financial difficulties.

On our For Patients and Families site, you can read all you need to know about:

• Getting to Boston Children's
• Accommodations
• Navigating the hospital experience
• Resources that are available for your family

At Boston Children’s, we’re known for our science-driven approach and our intense culture of innovation — a philosophy that pushes the boundaries of pediatric care. We’re often ranked as one of the top pediatric hospitals in the United States.

Our Division of Endocrinology operates one of the nation's most extensive research programs focused on pediatric endocrine disorders. With more than 50 basic science and clinical researchers, we are attempting to unravel the genetic and biochemical underpinnings of the endocrine system.

Over the past few decades, Boston Children's researchers have learned a lot about how the pituitary gland itself develops, which, in turn, aids general understanding of how to better treat hormone deficiencies. Our knowledge about hypopituitarism is constantly evolving. Read about our endocrinology research.