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What is replacement therapy?

Replacement therapy is the name used to describe any medical treatment which replaces a hormone which your body is not making for itself, or of which it is not making enough. A number of these hormones are made by your Pituitary gland.

Your pituitary is an important gland and is often referred to as the 'master gland' because it controls several other hormone glands, including the thyroid, adrenals and reproductive glands. It is usually about the size of a pea and is situated in a bony hollow beneath the base of your brain and just behind the bridge of your nose. The pituitary in turn is controlled by the part of the brain called the Hypothalamus. When your pituitary is functioning normally it produces the following hormones:-

Adrenocorticotrophic Hormone

This may also be referred to as ACTH, or corticotrophin. This hormone stimulates your Adrenal glands (situated just above your kidneys) to produce a hormone called Cortisol. The adrenal hormones help us to cope with stress.

Anti-diuretic Hormone (ADH)

This hormone is secreted from the back part of your pituitary (or 'posterior pituitary'), and is sent from your pituitary to your kidneys to limit the volume of urine produced. It is also known as Vasopressin.

Gonadotrophins

This is a name which covers two Sex hormones made by the pituitary - Luteinising hormone (often referred to as LH) and follicle stimulating hormone (FSH). In women, these hormones are sent by the pituitary to the ovaries,where they control the production of female hormones (Oestrogen and Progesterone) and stimulate ovulation. They are thus essential for a normal menstrual cycle and for fertility. In men, the pituitary sends them to the testes, where LH stimulates the production of the male hormone Testosterone, and FSH is important in sperm production.

Growth hormone

This is often abbreviated to GH. In children this hormone is essential for a normal rate of growth. In adult life growth hormone may be important for a number of functions including normal energy levels and maintaining normal strength of muscle and bones.

Prolactin

This hormone stimulates the breasts to make milk. It is present all the time in men and women, but is secreted in large amounts during pregnancy and breastfeeding.

Thyroid stimulating hormone

You may also hear this referred to as TSH, or sometimes as Thyrotrophin. As its name suggests, this hormone stimulates your Thyroid Gland (located near your windpipe) to secrete its own hormone, which is called Thyroxine. The thyroid gland controls many body functions, including heart rate and temperature. Lack of the thyroid hormone is referred to as Hypothyroidism.

Why do some people need replacement therapy?

Considering the complex multiple functions of the pituitary, it's not surprising that it sometimes fails to work properly! If your pituitary is not producing one or more of its hormones, or not producing enough, then this condition is known as hypopituitarism. It is most often caused by a benign (ie not cancerous) tumour of the pituitary gland itself, or of the brain in the region of the hypothalamus. If you have a Pituitary tumour, it may cause pituitary underactivity by the direct pressure of the tumour mass on the normal pituitary, or by the effects of surgical or X-ray treatment which you have undergone to treat the tumour. Less frequently, hypopituitarism can be caused by infections (such as meningitis) in or around the brain, by severe blood loss (particularly after pregnancy), by head injury, or by various rare diseases such as Hypophysitis or sarcoidosis.

Coping with the stress of hypopituitarism

In addition to physical issues, many people find pituitary illness emotionally traumatic. Particularly if you were unwell for some time before a correct diagnosis was made, there may be stress caused either by specific physical aspects (e.g. loss of libido, overproduction of cortisol) or by factors such as change to body image, exhaustion, anxiety and so on. In addition, both the fear of anticipated surgery so close to the brain and the fact that, for some people recovery can take quite a while, can be stressful, particularly if it follows a long period of ill health leading up to the diagnosis. All these issues can be just as difficult for family and close friends as for the patients themselves. Your GP will be able to arrange counselling if this is required (see GP Factfile sheet 12). You may also find it useful to make contact with The Pituitary Foundation's support team in Bristol (telephone 0845 450 0375) and/or with your nearest local support group, where you will find many people keen to help and support you.

Adrenocorticotrophic hormone (ACTH)

ACTH controls the adrenal glands and steroid hormone production.

What are the symptoms of lack of ACTH?

Fatigue is a common symptom, as is a general feeling of loss of physical well-being and vigour. You may also feel dizzy. Some patients also suffer from nausea and diarrhoea.

How is it diagnosed?

If severe, ACTH deficiency may be obvious from a single blood test, but usually you will need to attend a specialist clinic as a day patient for tests referred to as 'dynamic'. This means that you will have a blood test initially and then several more after you have been given something to stimulate the hormone. Most clinics either use an artificial version of the ACTH hormone or a test which reduces your blood sugar level. The test will show how your hormone level reacts over a period of time.

How is it treated?

Treatment is by taking the adrenal hormone, cortisol, which is referred to as 'Hydrocortisone' when it is made into a tablet. It is taken in tablet form, usually two or three times daily. Your GP will prescribe these, but you will still need to see your specialist from time to time for monitoring. Some clinics take blood samples in a way similar to the dynamic tests described above, and others rely on a normal medical examination with blood pressure check and so on. Occasionally other drugs are prescribed as alternatives to hydrocortisone. These include prednisolone or cortisone acetate.

Your Endocrinologist should tell you how to increase the dose of hydrocortisone yourself during any other serious or stressful illness (e.g. 'flu', routine operations, diarrhoea and vomiting). This is very important since the body normally makes a lot of steroid hormone under these circumstances. You should also carry a 'steroid card' and/or MedicAlert bracelet to warn other doctors that you need steroid replacement during illness.

Anti-diuretic hormone (Vasopressin)

Anti-diuretic hormone controls the production of urine.

Lack of anti-diuretic hormone leads to an illness called Diabetes Insipidus, where patients feel very thirsty and are constantly having to pass urine, including during the night. This condition can be treated by use of a drug called Desmopressin, or DDAVP. This is covered in detail in another Pituitary Foundation leaflet, entitled 'Diabetes Insipidus'.

Gonadotrophins

Gonadotrophins control the ovary or testes and sex hormones.

What are the symptoms of lack of gonadotrophins?

In women, lack of gonadotrophins usually causes disturbance to the menstrual cycle or even complete loss of periods. You may find you also lose interest in sex. In men, impotence and loss of sexual drive may be experienced. Infertility can be involved in both sexes. Both sexes, but particularly men, may notice a loss of hair stimulated by sex hormones (pubic, under-arm, body and facial hair). You may also feel generally under the weather. Prolonged loss of sex hormones for many years often leads to brittle bones or Osteoporosis.

How is it diagnosed?

As with most of the hormone deficiencies, you will be given one or more blood tests. These will indicate whether your sex hormone levels are below normal.

How is it treated?

Because a lack of gonadotrophins prevents your ovaries or testes from producing the correct sex hormones, treatment is usually with these hormones. For women, this usually means taking a variety of tablets which contain variable amounts of oestrogens and progestogens, which are the main hormones produced by the ovaries. Sometimes, instead of tablets, doctors prescribe other forms of treatment such as skin patches, as some patients find they get on better with these than with tablets. For men, the main sex hormone is testosterone, and this will be replaced by one of a number of means, often by injections every two to four weeks, or by tablets or skin patches. If you are trying to have a family, extra specialist help will be needed to help eggs to mature in the ovaries, or to produce sperm in the testes. See the section on infertility in our leaflet on 'The Pituitary Gland and its Hormones'.

Growth hormone

Growth hormone controls growth in children and aspects of general metabolism in adults.

What are the symptoms of lack of growth hormone?

In children, lack of growth hormone inhibits the child's growth. The child will be smaller than other children his or her age and may look younger, but will be normally proportioned. About a third of children with growth hormone deficiency are also overweight. This is because growth hormone also controls the fat under the skin. These children are not necessarily overeating. It is important to ensure they receive a balanced diet and a reasonable amount of exercise. Further details can be obtained from the Child Growth Foundation (their contact details are included in the list of 'Useful Addresses').

In adults, growth hormone is involved in maintenance of normal body weight and energy levels and in maintaining the strength of muscles and bones. Therefore, lack of growth hormone can cause depression, loss of energy and a decrease in muscle strength in some patients (see our leaflet on 'Adult Growth Hormone Replacement)'.

How is it diagnosed?

If a child is suspected to lack growth hormone, he or she will normally be sent for tests to a specialist centre, usually as an outpatient. Very careful measurements of height and rate of growth will be taken. There are a number of possible tests to find out how much growth hormone is being produced. These include blood tests or urine tests (which may have to be carried out at specific times of the day). Some centres also use an insulin tolerance test (ITT), which may cause your child to feel a little hot and sweaty as well as hungry. The ITT test may also be used for adults.

How is it treated?

Nowadays, replacement growth hormones are produced synthetically and are identical to natural human growth hormone. The growth hormone is supplied as a powder which you mix with a liquid before use. It is normally given as a daily injection, often before going to bed, at a dose which your specialist will have calculated to take into account your size and weight (or that of your child). Be sure you have understood the specialist's instructions about quantities to be used. The drug may well be supplied on an ongoing basis by your GP.

There are various tips about the best ways to persuade a child to accept these daily injections and, again, the Child Growth Foundation is a good source of advice and support. If your child is receiving growth hormone treatment it does not necessarily follow that he or she will also need treatment to stimulate the onset of puberty, but around half of such children will need this extra treatment.

In adulthood, a growth hormone deficiency can lead to a number of symptoms which result in a decreased quality of life in some (but not all) patients. An increasing number of adult patients are therefore treated with growth hormone replacement by daily injection, and some notice a substantial improvement in their energy, strength and overall quality of life on treatment. Replacement involves daily injections, often given by a 'pen' device. Growth hormone is expensive and this often leads to discussions between your specialist, GP and Health Authority about who should prescribe the treatment (or whether it should be provided at all) - if this problem affects you then please contact the Foundation for advice.

Prolactin

Prolactin stimulates milk production - and suppresses the effects of gonadotrophins.

What are the symptoms of too little or too much prolactin?

There are usually few symptoms and few problems. The exception is after pregnancy, when a lack of prolactin may mean that the mother does not produce breast milk.

However, unlike other pituitary hormones, prolactin is controlled by the secretion of a compound by the hypothalamus which acts as a brake on the pituitary's secretion of prolactin. In the case of pituitary tumours that decrease access of hypothalamic hormones to the pituitary gland, this brake is reduced and thus the secretion of prolactin increases. This means that patients with hypopituitarism may actually suffer from excessive levels of prolactin in spite of being deficient in other hormones. A high prolactin level may decrease libido and interfere with normal sex hormone levels and periods, or erections.

How is it treated?

No treatment is usually required for a low prolactin. If you do not make breast milk after your baby is born, other methods of feeding will be recommended. Do not worry about this, as modern feeds will ensure that your baby receives all the nutrients he or she needs.

If a high prolactin ('Hyperprolactinaemia') is causing problems then it may need to be controlled by a drug such as Bromocriptine or cabergoline which acts in the same way as the brain chemical which normally switches off prolactin. These drugs may also be used to decrease the size of a Prolactinoma (see our leaflet on 'Prolactinoma').

Thyroid stimulating hormone

What are the symptoms of lack of TSH?

TSH controls the thyroid gland and thyroid hormone production.

Fatigue is a common symptom when your thyroid gland is underactive. As mentioned above, a lack of TSH from your pituitary is one possible cause of this. You may also gain weight, even though you know you are not eating more or exercising less, and you may feel listless and unwell. Your skin and hair may become dry and you may lose interest in sex.

How is it diagnosed?

If your doctor thinks you may not be producing enough TSH, you may be given blood tests either by your GP or at a specialist clinic. This test measures your level of the hormone thyroxine.

How is it treated?

If lack of TSH from your pituitary is preventing your thyroid gland from functioning properly, then you will be prescribed the thyroid hormone, thyroxine. You will normally take these in the form of tablets once daily. These tablets will be prescribed by your GP, who will adjust the dose according to symptoms and the results of blood tests.

Aftercare

It is possible that your condition will require long-term monitoring and this will be shared by your endocrinologist and GP. Because pituitary conditions are relatively rare, you might find that you will be the only patient with hypopituitarism your GP is treating and (s)he might find it helpful to have a copy of our Pituitary Disease Factfile for General Practitioners.

Common questions

Q Will I have to take my hormone replacement tablets for ever?

A Yes, most probably. The exception may be sex hormones replacement in the elderly (but there is no real 'upper age limit').

Q Are there any long-term side effects?

A Replacement therapy is a natural form of treatment and there are not usually any problems as long as treatment is monitored.

Q Do I need to keep my medication in the fridge?

A Growth hormone needs to be kept refrigerated, as does desmopressin (not the tablet form). Other pituitary hormones do not. Check with your doctor or chemist for full details. For desmopressin, see also our leaflet entitled 'Diabetes Insipidus'.

Q I've heard that the growth hormone treatment can cause a severe brain disease. Is this true?

A This is not a problem with the modern artificially-produced growth hormone which has been in exclusive use since 1985.

What hypopituitarism and replacement therapy have meant to me

Other reading material

There are a variety of booklets available from the Child Growth Foundation.  Click here for more information.

General information on lifestyle issues and useful addresses are also available on this web site.

This leaflet has been prepared for patients with hypopituitarism.  The aim of this page is to provide general information about hypopituitarism and how it is treated. It is written in general terms, therefore, not all of it will apply to you. Hopefully you will find it helps you to understand your condition better and gives you a basis for discussion with your GP or endocrinologist.

We would like to emphasise that all patients are different and you should always seek advice from your specialist or GP.

©The Pituitary Foundation.  This material may not be stored or reproduced in any form or by any means without the permission of the authors and The Pituitary Foundation.

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