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How does the normal Pituitary gland work?

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 and 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 behind the bridge of your nose.

The pituitary gland produces a number of hormones, three of which concern us here - Prolactin, follicle stimulating hormone (FSH) and Luteinising hormone (LH). Prolactin is sometimes known as the 'milk hormone' because it stimulates milk production after childbirth, but it is also produced in men, although in smaller amounts. FSH and LH control sex and reproduction. In women they cause release of the sex hormone Oestrogen and stimulate the ovaries to produce eggs; these hormones are essential for a normal menstrual cycle. In men they cause the release of Testosterone and stimulate the production of sperm from the testicles.

What causes the prolactin level to be raised and what causes a Prolactinoma?

There are several likely causes of a high prolactin level in a blood sample, of which three are most common. The first is certain medications, particularly anti-sickness tablets such as metoclopramide (Maxolon) or tranquillisers such as chlorpromazine (Largactil) and anti-depressants such as Amitriptyline and Fluoxetine (Prozac). Make sure you tell your doctor about all your current treatments. The second possibility is an underactive Thyroid Gland, which can be diagnosed by a simple blood test and which requires treatment with thyroid hormone tablets. Once your doctor has excluded these two causes, he or she will consider the possibility of a prolactinoma.

A prolactinoma is a prolactin-producing tumour of the pituitary gland. Please rest assured that this is a Benign tumour, and not a brain tumour or cancer. Doctors use the word 'tumour' in this situation to mean a swelling. These tumours only grow very slowly and many do not seem to grow at all. We do not know exactly what causes prolactinomas, but they are the commonest type of hormone producing Pituitary tumour.

Prolactinomas come in various sizes, but the vast majority are less than 10mm (½ inch) in diameter. These are called Microprolactinoma. The rarer larger tumours are called macroprolactinomas. Prolactinomas can occur in men and women. The symptoms produced by a prolactinoma depend on the sex of the patient and the size of the tumour.

Prolactinoma in women

Most women with prolactinomas are likely to have micro prolactinomas. Your first symptoms may relate to loss of periods (Amenorrhoea) as excessive prolactin interferes with the pituitary's productions of FSH and LH which control the menstrual cycle. You may have reduced interest in sex (low libido) and experience vaginal dryness and discomfort during intercourse. You may also be infertile because of impaired egg release by the ovaries; as we shall see later, there is usually effective treatment for this problem. You may also develop excess breast milk production (called Galactorrhoea), which may leak spontaneously. This is due simply to the biological action of prolactin and is not a sign of breast disease, particularly breast cancer. Women with prolactinomas do not have any increased risk of breast cancer.

Prolactinoma in men

Men with prolactinomas usually have tumours larger than 10mm in diameter ( macroprolactinomas). However, larger size does not rule out an excellent response to tablet treatment. As in women, excessive prolactin reduces production of FSH and LH by the pituitary. This in turn lowers testosterone levels and may result in a reduced interest in sex, and in impotence. You may also have infertility due to a low sperm count. Milk production by the male breast can occur but is very uncommon even when prolactin levels are very high. In rare cases low testosterone also increases the risk of Gynaecomastia (breast tissue in men) which is treatable by surgery. Some men fear they may be changing sex due to all these changes. This is not the case: excess prolactin is the reason for the problems and they are treatable.

Large tumours

If you have a large tumour, you may have pressure symptoms such as headache or visual problems. This is because the nerves to your eyes pass over the top of the pituitary gland. In a minority of patients, an increase in pituitary size may cause pressure on these nerves and produce visual disturbance. Again, even these prolactinomas can usually be treated effectively with tablets, rather than surgery.

How is a prolactinoma diagnosed and what tests are carried out?

The tests to diagnose a prolactinoma are relatively straightforward and should not cause you too many problems. They consist of blood tests to check hormone levels and a scan of the pituitary gland to show the size of the prolactinoma. Your GP may carry out initial tests on your prolactin and thyroid levels. You then need to attend a specialist endocrine clinic as an outpatient for further tests, including any scans (see below).If the blood test shows that you have a raised prolactin level, this test will be repeated at least once to make sure it is a true result. As mentioned previously, a further blood sample will be taken to make sure your thyroid is functioning normally. The other hormones produced by the pituitary will also need to be checked; this may be done by a single blood sample, but some specialists will recommend that some patients with macro adenomas have further tests. They involve the insertion of a needle into one of your forearms, followed by the taking of blood samples after a substance (usually a hormone) has been given to stimulate the pituitary gland. The tests, which can take up to 4 four hours to complete, will be explained in detail by the doctor or specialist nurse carrying out the investigation.

A scan is usually carried out to give detailed pictures of the pituitary gland. There are two types of scan: MRI (magnetic resonance imaging, using a special magnetic technique) and CT or CAT (computerised tomography, using X-ray imaging). Both types of scan involve you lying on a moveable table and passing into a cylindrical piece of equipment. You may find the examination a bit noisy or claustrophobic, but you will probably find that it does not give you too much trouble. If it does tell a member of staff, who may give you a sedative. During the scan, the X-ray doctor may inject a special dye into your arm so that your prolactinoma can be seen more clearly. A minority of patients are allergic to this injection, so do tell the specialist if you have asthma or any allergies.

If you have any problems with your vision, you will probably be seen by an eye specialist who will check the strength of your eyesight and chart your fields of vision. Sometimes an X-ray scan of your spine and hip bones (bone densitrometry) may be recommended to see whether there is any evidence of thinning of the bones (Osteoporosis). This is a painless and straightforward test.

Women who have not had periods for a year, and male patients should be offered bone density tests to ensure that they are not developing osteoporosis.

How is a prolactinoma treated?

Whatever the size of your prolactinoma, it is likely that your treatment will be with tablets. Most patients are treated initially with cabergoline (brand name Dostinex). Women who want to conceive will usually be treated with Bromocriptine (brand name Parlodel). A third drug, which is very rarely used, is quinagolide (brand name Norprolac). All these drugs act by reducing prolactin secretion by the prolactinoma.

Prolactin levels often fall to normal within a few weeks of starting the treatment. In women, once prolactin has fallen to normal, menstrual cycles usually resume, interest in sex is regained and fertility is restored in most cases. This may happen quite quickly, so if you do not wish to become pregnant, you and your doctor will need to discuss an effective method of contraception before medication is started. In men, testosterone levels may rise, which brings an improvement in your sex life.

Nearly all prolactinomas shrink in size following treatment with the tablets. If your prolactinoma is pressing on the nerves to the eyes, there is a good chance that your vision will improve as the tumour shrinks. If you have a large prolactinoma, you may have several pituitary scans over the months and years so that the shrinkage can be measured.

Cabergoline is long acting and requires one or two doses per week. Bromocriptine is usually given twice or three times daily and quinagolide once daily. The usual dose of cabergoline is one tablet (0.5mg) once or twice a week although higher doses are occasionally required. Sometimes the dose can be reduced later during long-term treatment. The final bromocriptine dose for most patients is one tablet (2.5mg) twice or three times a day.

These drugs are safe and well tolerated by most patients. They should be taken with food to avoid the nausea which sometimes occurs if medications are taken on an empty stomach. All of these tablets can cause side effects in some patients; these are usually less common with cabergoline. Your doctor will give you instructions on how to build up the dose slowly, again to minimise any side effects, particularly dizziness on standing up and headaches. Occasionally the medications may cause slight constipation, but this can usually be cured by increasing the amount of fibre in your diet. Other side effects include tiredness, abdominal pain, breast discomfort and nasal congestion. Severe psychological disturbances, usually mental over-activity, can occur very very rarely.

The use of surgery and Radiotherapy for prolactinomas has declined in recent years, due to the remarkable effectiveness of tablet treatment. Very few patients with microprolactinomas will require these treatments, although some hospitals may offer surgery as an option most commonly for patients who are resistant to the drugs (5%) or get side-effects from them (5%). For the minority of patients with Macroprolactinoma which do not shrink following medical treatment (less than 10%), surgery may be required, particularly if your vision has not improved. However, what was previously a big operation has now been greatly simplified by a more minor procedure through the air sinuses at the back of the nose. This is known as Transsphenoidal surgery.

If a large prolactinoma does shrink effectively following tablet treatment, most specialists simply continue the drug, but perhaps in a reduced dose. General pituitary function may improve after tumour shrinkage has occurred. If you continue to have pituitary under-activity following treatment of your prolactinoma, then hormone supplements may be required. These may include steroid tablets for adrenal under-activity, thyroid hormone tablets for thyroid under-activity and, possibly, oestrogen HRT for women or testosterone supplements for men. Adult GH replacement therapy may also be required.

Pregnancy and Prolactinoma

Many women with a prolactinoma will be taking these drugs with the specific aim of falling pregnant. Your doctor will usually recommend that you stop taking them as soon as pregnancy is confirmed. Many thousands of healthy `bromocriptine babies' have now been born. There has been no increased risk of malformation and the children have developed normally. Cabergoline too appears to be safe during pregnancy but it is recommended that women with prolactinomas wanting to become pregnant should receive bromocriptine until more data is available on cabergoline.

The risk for microprolactinomas to enlarge during pregnancy is very small indeed. However, women with macroprolactinomas should defer pregnancy until the tumour has shrunk (as shown on an MRI scan). That way the chances of expansion during pregnancy are much reduced. If there is evidence of tumour expansion during pregnancy (for example, headaches or visual problems), then your doctor will probably tell you to start taking bromocriptine again.

Side Effects of Treatment

Please see the previous section and refer to your medication leaflet usually inside your medication box. Always consult your doctor or Endocrinologist if you experience any adverse side effect.

Aftercare

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

Loss of Libido, Infertility and Infertility and Relationships

You may suffer from a low sex drive, impotence or lack of self-esteem due to the imbalance of hormones and, in some cases, physical changes. This, in turn, may cause a strain on your relationship and your partner may feel neglected or hurt. There is also a possibility that you may have problems conceiving. It may help to talk to your partner about how you are both feeling and to consult your G.P./endocrinologist. You may wish to request a copy of our leaflet Psychological Issues in Pituitary Disease.

Other Factors to Consider

Returning to Work

The nurses will sort out a certificate to cover your stay in hospital and you will be advised how long you will be expected to remain off work. This usually depends on what your job is and whether you are self-employed or not.

Prescriptions

If you will have to take Hydrocortisone, Thyroxine or Desmopressin permanently you will get free prescriptions for all medicines. Ask at your GP's surgery, hospital or pharmacist for form FP92 (EC92A in Scotland).

The form (which will need to be signed by your doctor) tells you what to do. You will then receive an exemption certificate. These certificates only last for a finite period after which they must be renewed. Your health authority may automatically send out an application for renewal.

Information about free prescriptions and the full list of medical conditions which qualify for exemption from prescription charges can be found in leaflet HC11, available from pharmacies and main Post Offices or the Department of Health (click here). If you are not sure whether you are entitled to free prescriptions, you must pay for your prescription and ask for a NHS receipt (form FP57 in England, EC57 in Scotland) when you pay; you can't get one at a later date. This form tells you how to get your money back. You must claim within three months.

If you don't qualify for free prescriptions and need more than five prescription items in four months, or more than 14 in a year, ask your pharmacist about pre-payment certificates. This will be more economical way of paying for a large number of prescription items.

Driving

You have a legal obligation to advise the Driver and Vehicle Licensing Agency (DVLA) if there is any reason why you should not drive. Many patients with prolactinomas will find there are no restrictions, but you should check with your GP. The only conditions likely to affect you are problems with your eyesight. Transsphenoidal surgery does not in itself limit your entitlement to drive. Your doctor or specialist will give you full advice. You may also seek extra advice from the DVLA by consulting the Medical Adviser, The Drivers' Medical Branch, 2 Sandringham Park, Swansea Vale, Llansamlet, Swansea SA6 8QD. 0870 0600 0301. There is an out-of-hours answering machine.

Alcohol and Replacement Hormones

There is no interaction between alcohol and these drugs, and you are allowed to drink in moderation. You should restrict yourself to one to two units of alcohol a day.

Insurance

Each case will need to be assessed individually. You may find that the insurance company charges extra premiums but this should be contested if your prolactinoma is small and vision is not affected. If your condition has only recently been diagnosed, they may want to postpone a decision for a while. Of course, each insurance or pension company will have its own practices. You will need to persevere and be specific about your condition, as the people you speak to initially may not have any medical knowledge themselves. It is not unheard of, for instance, for Diabetes Insipidus to be confused with diabetes mellitus (sugar diabetes). Shop around if the first response is unsatisfactory. If you would like more information, please email us on helpline@pituitary.org.uk or telephone 0845 450 0375.

Employment Issues

If your pituitary condition is causing you difficulties in retaining, seeking, or returning to employment, contact the HelpLine or your local Citizens Advice Bureau for the most up to date information about employment rights and where to get advice about benefits. etc.

Personal Medical Identification

If you are taking hormone replacement medication, it is a good idea to wear a medical information bracelet or equivalent as the information will help the doctors if you have an accident and are unconscious. For more information, please click here.

Members have tried:

• MedicAlert®  The MedicAlert Foundation, 1 Bridgewharf, 156 Caledonian Road, London N1 9UU. Tel: 0800 581420. Website: MedicAlert
• MediTag, 37 Northampton Street, Hockley, Birmingham B18 6DU. Tel: 0121 200 1616. Website: MediTag
• Doctag, 31-33 West Pilton Drive, Edinburgh, EH4 4HS. Email: info@doctag.net. Website: www.doctag.net.

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Common questions

Q Can I drink alcohol when taking bromocriptine, cabergoline or quinagolide? 
A  Yes, in moderation, but check with your doctor for advice on your specific drinking habits.

Q Can my tablets be stored at room temperature? 
A  Yes, bromocriptine, cabergoline and quinagolide can all be stored in your medicine cupboard. However, please note that the cabergoline bottle has a moisture-absorbing gel in its cap and this should not be removed.

Q What happens if I miss a tablet or cannot remember whether I have taken one? 
A There should be no problem if you miss a tablet. If you are unsure whether you have taken one it is probably better to miss a dose. For cabergoline, a delay of one or two days will make little difference because the drug is very long-acting. If you are taking bromocriptine, just start again with the next tablet. However, in general terms, regular tablet taking is important for the success of your treatment.

Q I have heard that women with prolactinomas can sometimes develop complications during pregnancy - is that true? 
A The main worry used to be that the prolactinoma would enlarge during pregnancy. Please refer to the section headed "How is a prolactinoma treated?"

Q Do all patients with prolactinomas need treatment? 
A Most do. If you have infertility problems, problems with lack of interest in sex (low libido) or impotence, excessive milk production or a large tumour causing pressure symptoms, then there is a clear case for treatment. If not, then the need may not seem so clear. However, prolonged sex-hormone deficiency (particularly oestrogen in women) causes thinning of the bones, or osteoporosis. Therefore, most doctors believe that women without regular periods should receive treatment. The same applies to men with low testosterone levels.

Q How long will I have to taketablets for prolactinoma?
A You will probably need to take these tablets for a relatively long time, with interruption during pregnancy as described earlier. If you have a microprolactinoma, many specialists withdraw treatment for a trial period every three years or so; in some patients the problem seems to disappear during prolonged tablet treatment. If you have a large tumour, your treatment courses may last several years; tumour control is maintained and side-effects during long-term treatment are not usually a problem.

Q What are my fertility prospects as a man with prolactinoma?
A Tablet treatment alone may improve your sperm count and lead to the return of normal fertility, although this could take several months. Additional treatment with hormone injections ( FSH and LH) may also be necessary. Fertility treatment is usually attainable.

Q Is tablet treatment better than surgery for prolactinomas?
A Tablet treatment is the accepted form of treatment. Occasionally (5-010%) patients have either severe side effects or do not respond to cabergoline. In these patients surgery may be advised although it is not always curative (70-80%) and the operation may cause hypopituitarism.

Q Does prolactinoma run in families? 
A No, most cases are isolated. Vary rarely, more than one member of a family may have a prolactinoma, but this is sufficiently uncommon for you not to have to worry about it.

Q Is it safe to take the oral contraceptive pill if I have a prolactinoma?
A Oral contraceptives should only be taken by patients with prolactinoma in consultation with and under the supervision of their specialist.

Q Is pituitary tumour hereditary?
A Only in very exceptional cases, less than 1%.

Q How does high prolactin interfere with fertility? 
A It stops ovulation because high prolactin levels stop the pituitary stimulating the ovaries. This means there is no Progesterone in the circulation in the second half of the menstrual cycle.

What having a prolactinoma has meant to me

A Patient's Story 

"Kathleen"   In 1975 my husband and I decided we would like to start a family so I stopped taking the pill and waited for my periods to return. They did not materialise! A year later we paid our first visit to an infertility clinic. When the medical staff examined me they noticed a dry crustiness around my nipples, which produced a white milky discharge when squeezed. They spoke of a high prolactin level and I discovered I had such a thing as a pituitary gland.

Over the next few months I had various tests. The first treatment was the drug clomiphene which had no effect. The specialist then prescribed bromocriptine which I was told had a good success rate, although it was new (in 1976). After only a short while I heard from my doctor to say that my latest urine specimen had shown I was pregnant. I stopped taking bromocriptine and, after a normal pregnancy, I gave birth to a healthy daughter, whom I breast fed for ten months. My periods did not return. Four years later we were hoping for a second baby. I was prescribed bromocriptine again and became pregnant almost immediately, before any return of menstruation. After the birth of my second daughter, again my periods did not return.

Ten years after this I moved to Aberdeen where my GP became concerned about my lack of menstruation for sixteen years and the increased risk of developing osteoporosis in later life. He referred me to a specialist. Until this time I had not been aware of any potential danger from not menstruating and was happy enough not to have a monthly cycle, so I probably did not seem too happy at the prospect of my periods returning in my forties after such a long absence. I was told that it was possibly harmful that my body had not been producing oestrogen. I had a skull X-ray, a brain scan, several blood tests, and my bone density was measured. My consultant prescribed bromocriptine. After a few weeks I started to menstruate and my prolactin level fell. This time I did not want to become pregnant, so contraception was a major concern. With my consultant's advice, we decided that a low-level contraceptive pill was the best answer for us.

I feel very fortunate. I have a prolactinoma, but I have never felt ill. Bromocriptine gave me my two daughters and is keeping my body healthy. Hopefully it will keep me well in future years.

What having a prolactinoma has meant to me

A Patient's story

"John"   No one can be sure when the tumour started growing. It grew so slowly that I did not notice any symptoms until 8 years ago when I began to have a general feeling of lethargy and occasional migraine type headaches. When I caught a cold, my sinuses were blocked and pressure built up causing pain. Sneezing was agony. I learnt to sneeze through my mouth. My left eye became light sensitive and watery and I began to get a pain down the left side of my face to my jaw.

I had an operation to straighten my nose to help my breathing. At the same time, an allergy test was done with no positive result. I had my teeth x-rayed, eliminating the possibility of an impacted wisdom tooth.

My general feeling was of tiredness, discomfort when moving my head and weight increase. When I walked on a pavement with hard-soled shoes, I felt a it appeared to cause a jarring pain in my neck. I had physiotherapy for a damaged neck. I was taking beta-blockers, antihistamine tablets, anti-migraine tablets and inhalers. I tried a food intolerance diet and got spectacles for reading and for long sight.

The headaches got worse and became more frequent. I would sleep at night, wake in the morning, shower and have to go back to bed where I would sleep until lunchtime. Every month or two the headaches were so severe that I had to have pethidine. I tried acupuncture and homeopathy.

I could not play games with my children. My wife was stressed with the worry. I found it difficult to do simple tasks, and my work suffered.

In February 1996 I asked my ENT specialist for a CT scan. He phoned me afterwards saying that my sinuses were fine, but that I had a prolactinoma. I was so relieved that he had found something that I told him the news was wonderful.

With only two small tablets of cabergoline a week my life has completely changed. Between March and Christmas 1996, I have had filming trips to The Gambia twice, India twice and Madagascar twice. I feel 20 years younger. My weight has dropped from 12 stone to 10 stone. I have never enjoyed life so much. All the symptoms have gone.

People I meet can't believe how much I have changed. Some people that I have known for years haven't recognised me. My only regret is that at 48 years old, I am just beginning to really enjoy life.

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

This leaflet has been prepared for patients with prolactinoma. The aim of this page is to provide general information about prolactinoma and how it is treated. It is written in general terms so 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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