Table of Contents
What Is Hypopituitarism? ............................................................................................................... 2
What Causes Hypopituitarism? ....................................................................................................... 4
What It Means to You ..................................................................................................................... 4
I. Thyroid-Stimulating Hormone (TSH) Deficiency .............................................................. 4
II. Adrenocorticotrophic Hormone (ACTH) Deficiency ......................................................... 6
III. Growth Hormone (GH) Deficiency .................................................................................... 7
IV. Gonadotropin (FSH, LH) Deficiency .................................................................................. 8
V. Antidiuretic Hormone (ADH) Deficiency ........................................................................ 11
Your Future with Hypopituitarism ................................................................................................ 12
Notes about Your Care .................................................................................................................. 13
This booklet has been written for you and your family. We hope it will help you to learn about
hypopituitarism. The booklet will define hypopituitarism as well as discuss its symptoms and
There is a lot to know about hypopituitarism. Your doctor and nurse will discuss with you the
details of this condition. This booklet is meant to serve as a supplement to their teaching. We
would like you to become involved in your treatment. Please ask the nurse or doctor to explain
anything that may not be clear.
What Is Hypopituitarism?
It is a decrease or absence of one or more of the pituitary hormones. “Hypo” means “less than
normal”. The term panhypopituitarism may be used when ALL of these hormones are deficient
(“pan” means “all”).
The pituitary is called the “master” gland. It is a pea-sized gland found in the middle of the
skull. This gland will release its hormones in response to messages sent from the part of the
brain called the hypothalamus. It is called the “master” gland because its hormones signal all the
other endocrine glands to produce their own hormones.
The target glands are those glands in the body that make hormones in response to signals from
the pituitary gland. These target glands are:
- the thyroid gland
- the adrenal gland
- the ovaries in females, and the testes (testicles) in males
Hormones are the chemical messengers. They are released from a gland into the bloodstream.
The bloodstream then carries the hormones to the tissues and organs of the body that use them.
The front part of the pituitary makes many kinds of hormones that are needed for the body to
function. The hormones that come from the front pituitary gland are: Thyroid Stimulating
Hormone (TSH), Adrenocorticotrophic hormone (ACTH), Growth Hormone (GH), and the
Gonadotropins – Follicle Stimulating Hormone (FSH) and Luteinizing Hormone (LH).
The back part of the pituitary is a storehouse for the Antidiuretic hormone (ADH).
What Causes Hypopituitarism?
In many cases, we do not know what causes it. We do know that, in most cases, it is not
hereditary. Parents do not pass it on to their children.
Hypopituitarism may be congenital. This means that the pituitary or hypothalamus did not form
normally before birth. In other cases it may be acquired. This occurs if there was damage to the
pituitary or hypothalamus during or after birth. Hypopituitarism can be caused by a tumor in the
pituitary area of the brain, a severe head injury, or an infection in the central nervous system
(such as encephalitis). Radiation therapy to the part of the brain where the gland is found may
cause hypopituitarism. It also occurs if the pituitary gland is removed
What It Means to You
At this time, you may be missing one, some, or perhaps all of these hormones. You and your
family need to have some knowledge of all of the pituitary hormones. The doctors and nurses
watch for signs and symptoms of other hormone deficiencies when you are seen in clinic. But,
what you observe between visits is crucial as well.
When there are not enough of the pituitary hormones being released in your body, the target
glands (thyroid, adrenal, ovaries, or testes) are not able to get the correct messages. Therefore,
the glands do not produce their own hormones. For example, the thyroid gland is not “told” to
make thyroid hormone when there is a lack of thyroid-stimulating hormone (TSH) from the
pituitary. Without normal levels of the target gland hormones, your body is not able to function
as it should.
Hypopituitarism is almost always permanent, but it can be treated. Treatment involves replacing
the hormones with a pill, a shot, or nasal (nose) spray. Your body can use these hormones in
place of the natural ones that your body is not making. Next we will discuss each hormone and
what it means if you lack this hormone.
I. Thyroid-Stimulating Hormone (TSH) Deficiency
The thyroid is a small gland found in the neck, in front of the wind-pipe. It makes and releases
thyroid hormones (see drawing). A lack of thyroid-stimulating hormone means the thyroid is not
making this hormone.
Thyroid hormones are needed for physical and mental growth. It helps to make the body
function as it should. Some ways your doctor or nurse can figure out if you are lacking thyroid
Symptoms - (listed below)
Physical exam, which includes growth rate during childhood and adolescence
Blood tests that measure levels of the thyroid hormones and thyroid-stimulating hormone.
These tests are called a T4, T3, and TSH levels.
If your thyroid hormone level is too low, a daily pill(s) is prescribed by the doctor to replace the
hormone. The pill often prescribed is called Synthroid® (levothyroxine sodium). You will take
this pill daily. You will most likely need to take it for the rest of your life.
To be certain that this hormone is being replaced in the correct amount; you will need clinic
visits for check-ups and blood tests.
Between clinic visits, you will need to know what signs and symptoms may occur if too few or
too many thyroid hormone pills are being taken.
Too Little Thyroid Hormone or Not Enough Thyroid Medicine
- feeling cold (often when others do not feel cold)
- cool, dry skin
- fatigue and increased sleep
- slow growth in height; weight gain
- poor appetite
- calm and quiet disposition
- coarse, dry, thin hair
Too Much Thyroid Medicine
- feeling hot (often when others do not feel hot)
- moist, sweaty skin
- trouble sleeping, feeling nervous or restless, short attention span
- normal or rapid growth in height; weight loss
- increased appetite
- fine hair which can sometimes fall out
II. Adrenocorticotrophic Hormone (ACTH) Deficiency
A lack of the hormone ACTH results in a lack of cortisol. This hormone is made by the adrenal
glands. These two glands are found on top of the kidneys in the middle of the back.
Cortisol keeps the body’s blood sugar at a normal level. It also helps the body deal with physical
stress, such as fever or injury. Some of the ways your doctor figures out if you are not able to
make proper amounts of cortisol are:
Symptoms such as changes in the way you feel. This includes how well you keep up with
your daily routines and handle illness.
Physical exam, which include checking your height and weight.
Blood and urine tests to measure amounts of cortisol.
If too little cortisol is being made, hydrocortisone (Cortef®) is prescribed. Hydrocortisone is
taken as a pill. It is taken 2-3 times daily throughout life. If for any reason you cannot take the
medicine by mouth, it must be given as a shot. The dose prescribed will be enough for normal
daily tasks when you are well. It is very important that the dosage be increased with fever,
some illnesses, and injury. Guidelines for how to handle these times are outlined in a Health
Facts for You called “Guidelines for the Child Who is Cortisol Dependent.” Your nurse and
doctor will instruct you about this important information.
Again, you need to be aware of the symptoms that may suggest too little or too much cortisol
Too Little Cortisol or Not Enough Hydrocortisone
- weakness or extreme tiredness
- illnesses such as colds and flu seem to be more severe and last much longer than expected
- nausea or vomiting
- cold, clammy skin
- fast pulse
- fast breathing
- severe pains in abdomen, legs, lower back
- lower than normal body temperature
Too Much Hydrocortisone
- decreased growth rate
- increased weight, especially in face and abdomen
- increased bruising
III. Growth Hormone (GH) Deficiency
Growth hormone is a pituitary hormone. It affects the growth of bone and body tissues. Unlike
the other hormones discussed, GH does not stimulate a specific target gland. This hormone
stimulates the body's organs, bones, and tissues.
When lacking enough growth hormone, a child grows very slowly. In time the child is much
smaller and younger looking than the child’s same age peers. The child may have a slightly
chubby or “baby face” look.
Ways your doctor will decide if you are lacking GH are
Growth rate: an exam of your height over a certain length of time compared to your past
Blood test: a growth hormone test (blood samples are taken after a 6-hour fast and an
oral or injected medicine).
Bone age x-ray: a hand x-ray that tells us how slow or fast your bones are growing.
If you are found to be lacking GH, and you are not growing as you should, GH can be replaced
with a shot. It is most often given once a day. GH does not work if given by mouth. GH is
given until your growth is complete, or stopped when you reach an adult height. When GH
deficiency is severe, it may be necessary to continue GH treatment into adulthood to maintain
healthy bones, muscles, and energy level.
The clinic nurse will teach you or your parent to give the GH shots at home.
Side effects from taking GH are few and rare. Sometimes swelling may occur. This will go
away. Rarely, it can cause the blood sugar to rise to higher than normal levels. And, if you
notice headaches or pain in your hips or legs, contact your doctor promptly.
While getting GH shots, your growth rate is watched closely. Clinic visits are scheduled every 3-
6 months. During these visits, your height and weight are checked. Sometimes bone age x-rays
and blood tests are done.
IV. Gonadotropin (FSH, LH) Deficiency
Gonadotropins are the hormones that begin the process of sexual growth. In girls, these
hormones tell the ovaries to make the hormones that cause breast development, menstrual
periods, and other changes such as, rapid growth in height and change of body shape.
In boys, these hormones tell the testes (testicles) to begin making sperm. Testosterone is the
hormone that causes increased size of the penis and testes, facial hair growth, a lower voice, and
other body changes such as, rapid growth in height and muscle mass.
If you are missing some or all of the other pituitary hormones, you may be missing gonadotropin
hormones as well. We may not know for certain until you are near the teen years when puberty
should be starting. Some ways your doctor can figure out if you are not able to make enough of
these hormones are:
Physical exam of breasts in girls and genital areas in both sexes.
Bone age x-ray
If you appear to be lacking these hormones, replacement of the sex hormones is the treatment
needed to begin sexual development. Sex hormones in girls are estrogen and progesterone. The
sex hormone replaced in boys is testosterone. Now we will look at how these hormones are
taken in both girls and boys.
Treatment for Girls
Sex hormones are given either in pill (oral) or patch form for girls.
Pills: If pills are used, one estrogen hormone pill (Premarin®) is taken per day. After some
months, a second pill, a progesterone hormone (Provera®), is added for some of the days of the
month. A monthly “cycling” schedule is maintained in an attempt to mimic the way the ovaries
should be making hormones. At the end of each monthly cycle, a menstrual period or bleed will
occur for a number of days. These periods are often a bit shorter and involve less bleeding than
periods in girls who produce their own hormones.
After several cycles, your doctor may change to a single pill that combines both hormones. This
is really the same kind of tablet that is called an oral contraceptive.
Patch: Another way that estrogen is given is with a skin patch containing estrogen alone. Skin
patches are worn on the hip or buttock, and changed either once or twice a week.
Effects of estrogen are
- increased height
- a slow growth of breast tissue
- a change to a more feminine body shape
- mood changes and swings
- increased appetite
- slight changes in voice
- interest in sexual activity
These sex hormones do not cause growth of pubic and underarm hair which may be sparse in
patients with hypopituitarism.
Treatment for Boys
Sex hormones for boys are most safely given by injection (shot) or by placing a gel or patch onto
The hormone (testosterone) injections are given into a large muscle in the hip (gluteus) or the
thigh every 3-4 weeks. Most often, treatment for younger teen boys begins with these shots, and
most often the nurse or doctor in your local doctor’s office will give them. Some parents and the
boys themselves prefer to learn how to give the shots for greater ease. The clinic nurse can teach
you how to prepare and inject the testosterone, if you prefer.
For older teen boys, and grown men, a testosterone gel or patch may be prescribed instead of
the injections. The gel is applied onto the skin each day, and the patch is placed on the skin and
changed each day. Your doctor, nurse or pharmacist can instruct you about how to apply these
and about what areas of skin to use and to not use.
Effects of testosterone are
- increased height
- growth of underarm, pubic, and some body hair
- increase in the size of the penis
- beginning of penis erection and ejaculation
- increased muscle throughout the body with a gradual change to a masculine body shape
- mood changes and swings
- increased appetite
- a deepening in voice
- interest in sexual activity
The size of the testes does not change much as they are not making the testosterone.
In both girls and boys, clinic visits every few months are needed when sex hormone treatment is
started. Sometimes, doses need to be changed to assure that these body changes are not taking
place too slowly or too quickly. For the same reason, bone age x-rays of the hand and blood tests
are done at some of these clinic visits.
Once growth is complete and a dose is figured out, visits will be much less often. These
hormones are given well into adult life. While it is not life threatening to stop these hormones,
they provide a means to a normal adult life. As the teens and young adults mature, they are able
to have normal sexual function. Lack of gonadotropins can affect fertility. Since new findings
related to fertility are always being explored, you may wish to consult with fertility specialists in
the future. Later in adult life, you with your doctor’s guidance may decide to stop or decrease
V. Antidiuretic Hormone (ADH) Deficiency
The back (or “posterior”) part of the pituitary acts as a storehouse for an important hormone
called ADH. ADH helps the body to retain the water that it needs to work as it should.
When ADH is lacking, the kidneys cannot concentrate urine. The two most noted warning
- excessive thirst
- frequent urination, often very dilute, pale-colored urine
This can lead to severe dehydration if not enough fluids are taken to “keep up” with the amount
of fluid being lost as urine. Severe dehydration calls for immediate medical treatment. ADH
deficiency is also called diabetes insipidus or “D.I.” This is not the same as the more common
diabetes mellitus or “sugar diabetes”.
Ways your doctor will decide if you are lacking ADH are listed below.
Increased urination and thirst.
Loss of weight.
Laboratory tests of both blood and urine.
When the pituitary gland does not release ADH, this hormone can be replaced with a medicine
called desmopressin or DDAVP which comes either as a pill or a nasal spray. Desmopressin
helps the body in the same way that ADH does. It allows the body to hold onto the fluid it needs.
The doctor, nurse, or pharmacist will instruct you on its use. Most often, it needs to be given at
least once per day throughout life.
Listed below are signs of too little or too much ADH
Too Little ADH or Not Enough Desmopressin (DDAVP)
- Frequent and increased urination of pale-colored urine
- Increased thirst
- Dehydration, if fluid intake not enough (symptoms include dry tongue, sunken look to
eyes, tearless cry)
- If untreated, can lead to increased sleepiness and, in time, coma
Too Much Desmopressin (DDAVP)
- Decreased urination of concentrated, very yellow urine
- Decreased thirst
- Less urine output than intake of fluids
- Weight gain (puffiness)
- If untreated, can lead to confusion, increased sleepiness, and, perhaps, seizures
If these symptoms are noted, changes in the dose of medicine may be needed. Sometimes, it may
appear that the usual dose not work as well when a cold, allergy, or other cause of nasal
congestion exists. It is important to clear the nose of mucous before the medicine is given.
Adults and older children can merely blow the nose well. Infants and young children may need
to have the mucous cleared by using a bulb syringe. Your nurse and doctor will provide you with
a more complete explanation about the treatment of ADH deficiency. They will discuss with you
what you need to know about safety and what to do in an emergency.
Your Future with Hypopituitarism
There are ways you can help yourself have a healthy life with hypopituitarism. First you need to
have a good understanding of your condition. Along with this knowledge, you need to make sure
you take the correct hormone replacement treatment. Part of good health also includes regular
clinic visits with your doctor. While your treatment is prescribed by a doctor, the key to doing
well is up to you. Here are a few guidelines to help.
Know your medicines and take them as prescribed. It is vital that you do this. Talk to
your doctor, nurse or pharmacist if you are not sure how to take them. It may be helpful
to ask for ways to remember to take them on time.
For ACTH and ADH deficiencies, you need to be sure to always wear your Medic-Alert
bracelet. In case of accident or sudden illness, the information on this bracelet can be
As your life changes, you may need to inform new people in your life (teacher, roommate,
spouse) about your medical needs. This is very important if you are cortisol dependent.
If you are not sure how to explain your needs, talk to your nurse or doctor. They can help
find a good way to explain it to others. It may be helpful to use this booklet as a guide.
For further information, call your doctor or nurse or contact the American Family
Children’s Hospital Pediatric Specialty Clinic at (608) 263-6420.
Your health care team may have given you this information as part of your care. If so, please use it and call if you have
any questions. If this information was not given to you as part of your care, please check with your doctor. This is not
medical advice. This is not to be used for diagnosis or treatment of any medical condition. Because each person’s health
needs are different, you should talk with your doctor or others on your health care team when using this information. If
you have an emergency, please call 911. Copyright © 12/2017 University of Wisconsin Hospitals and Clinics Authority,
All rights reserved. Produced by the Department of Nursing. HF#4619
Notes about Your Care
Current Hormone Needs:
Medicines to Replace These
What to Watch For:
More Notes About Your Care