Introduction

To All Pituitary Patients:

Perhaps this is the first time you have heard the word 'pituitary', or maybe you are already an old hand with a certain amount of pituitary knowledge under belt already.  Or perhaps you are somewhere in between; being at one stage or another of your own pituitary journey.

Whatever stage you have reached, the Pituitary Foundation realises that this can be a bewildering and sometimes isolating experience.

Research and progress can, of course, slowly change treatments but we strongly believe that the fundamental issues, tests and questions faced by pituitary patients remain the same.  This 'Fact File' has been produced to help you better understand your needs and entitlements, the why's and wherefores of pituitary function testing and also, when to increase your steroid dose if this is appropriate to you.

Fellow patients have thought long and hard about the many presenting symptoms of pituitary disease and also considered the relevant questions you may like to ask your GP and/or consultant.  We've considered and included the problems that we, as pituitary patients, have experienced through our own particular journeys and included as much information as possible to best support you and those who care for you - your partner, family, friends...

The Pituitary Foundation offers a range of services and information to support patients and their carers:

• Telephone HelpLine 0845 450 0375
• Endocrine Nurse HelpLine 0845 450 0376 (open Tuesday mornings 9:30 to 12:30; Thursday evenings 6:30 to 9:30)
• A variety of information leaflets and GP Factfile
• National newsletter
• National and regional conferences
• Local Support Groups and Networks

"Remember, don't feel alone.  We are here to help."

1. Pituitary Patient's Charter

This charter informs you, as a pituitary patient within the UK, about what the Fuondation currently identifies as best medical practice.  By understanding what is available you can be confident that you, and your medical management team, are doing the best in your interest.

This is a living document.  We are striving towards ensuring that all patients have acces to the correct and best possible treatment, together with the earliest achievable diagnosis.

WE ALL HAVE THE RIGHT TO BE TREATED WITH RESPECT

Although not everyone you meet on your pituitary jounry wil have heard of or seen the symptoms of pituitary disease during his/hjer career, this does not mean the effects are not genuine and deserving of medical care, together with further and appropriate investigations and treatment.

An affirmation for a pituitary patient

The Pituitary Foundation expects all patients with pituitary disease to receive equal treatment, regardless of age, gender or geographical location within the United Kingdom.  This statement should enable its user to gauge his or her satisfaction with their treatment and empower them to ask for a second opinion if they don't believe they are getting the support to which they are entitled. 

Once diagnosis is suspected, patients should be referred to a specialist endocrine centre with a full range of expertise available, for further assessment and treatment.  An accredited clinical Endocrinologist should be responsible for co-ordinating all treatment, both to ensure proper diagnosis is made and for long-term follow up.

At the centre it is vital that the following expertise and services are available:

• Endocrinologists, pituitary neurosurgeons, radiotherapists and other specialists as needed agree management of the patient's condition whilst in close communication with the patient
• Pituitary imaging (MRI and CT scanning) should be performed in a centre where pituitary scans are carried out regularly by experienced professionals
• Vision and visual fields testing are readily available
• Pituitary function testing (see section 7) to be carried out in a fully equipped investigation unit by experienced personnel, including specialist endocrine nurses. It is important for both diagnosis and future treatment that the full range of tests are carried out
• It is essential that surgery be performed by surgeons who specialise in pituitary surgery and so are able to choose the most appropriate method of operation for patients with both ‘non functioning’ and ‘hormone secreting’ tumours
• An experienced histopathologist, with a specialised pituitary or endocrine interest, should perform laboratory testing
• Access to specialist endocrine nurse who can offer support, educational information, advice and guidance

For your longer- term care it is important that the following should happen:

• All patients should have access to, and receive detailed explanation of their condition and treatments plus emotional care by professionals conversant with all aspects of their condition - including immediate and long-term outcomes.  Patients should be informed of self-help groups such as The Pituitary Foundation and Child Growth Foundation.
• Literature relative to pituitary conditions, treatments and lifestyle issues should be available in clinics, investigation units, and in-patient wards
• Introductions and referrals should be provided, where necessary, to other specialists such as gynaecologists, for infertility and hormone replacement therapy, psychiatric services for counselling and educational psychologists for child patients
• Agreed management of care between the specialist centre, GP and more local clinicians to enable some aspects of long-term care to be provided more locally to patient
• Patients should be offered access to a second opinion, either through their GP or endocrine specialist if they are unhappy about any aspect of the management of their condition
• Patients should receive regular checks where their condition may affect other aspects of their health in the longer term.  For instance, Osteoporosis or visual problems
• Advice should be given in respect of criteria for social benefits, for example: free prescriptions

The Pituitary Foundation will promote the essence of this Charter within both the medical and patient communities.  It is The Foundation's hope that the above services, together with any necessary medication and specialist treatment are available to ALL patients regardless of the area in which they live.

2. Pituitary Patients' Guide

A step by step practical guide for patients who might have a pituitary condition

Firstly

Consider and write down all of your questions and don't be hesitant about asking them, for example: a time span for each procedure; how long you may be off work; what medication you will be taking, etc.

Diagnosing your condition

You may have been diagnosed already and be receiving your treatment, so please also refer to our leaflets for full information on your particular condition.

Your GP will probably be the first contact, but in some cases your optician, or other clinician may have been consulted and referred you to your GP for further tests.

As pituitary conditions are quite rare, your GP may not have come across another patient in their practice and may investigate other conditions (e.g., diabetes mellitus, migraine, menopause) prior to possible diagnosis and referral to an endocrinologist (a consultant specialising in hormones).  At your first appointment with an endocrinologist, the following will usually happen:

• A full medical history will be taken - lots of general health questions and when you experienced your symptoms, how they felt, and your family history of general health.
• You will probably be given a physical examination - blood pressure, pulse, chest and heart checked.  The doctor will look into the back of your eyes and may check your 'fields' of vision (how far you can see to each side without moving the eye).
• Blood should be taken to test relevant hormone levels (this is quick and quite painless).  The results usually take 2-3 weeks, a copy of these should be given to your GP
• The endocrinologist may want you to have a scan of the Pituitary gland using an MRI, or CT scanner - the waiting list can be more than several weeks/months in some hospitals.  Having a scan is painless and will not harm you.  An MRI offers a much clearer picture and involves being in a more confined space than a CT scanner.
• If you are concerned about this or suffer from claustrophobia, please let your GP know as he/she can offer a relaxant, which does help.
• You can take along your partner / relative / friend with you to this (and any future) appointments.  it is also a good idea to jot down and take with you any matters you wish to discuss which are relavant, in case you forget.

Please note: almost all pituitary tumours are benign - they are not cancer - however, may still require treatment.

An  important point - it is highly unlikely that any visual problems will deteriorate further, and it is far more usual for your sight to improve following treatment.

Treatment if a pituitary condition is diagnosed

Once you have had your blood test results and your scan (if needed) and returned to see the endocrinologist, your treatmetn (if any required) will be started.  This may include any of the following:

• Hormone treatment - sometimes medication / replacement hormones are given, and the endocrinologist will monitor your levels carefully and regularly.
• Surgery - the endocrinoogist works in conjunction with a neurosurgeon (usually basked within the same hospital or nearby).  The neurosurgeon will see you to discuss the type of surgery he will perform, how long he expects you to be in hospital and the recuperation period afterwards.  You will be able to discuss any problems or fears you have at this time.
• Radiotherapy - this may be given soon after surgery or within the following months.  It is a procedure carred out at a specialist centre (nearest to your home) and is used to complement surgery.  Having radiotherapy does not mean that your Pituitary tumour was malignant.

Support

Through the initial stages of diagnosis, treatment and ongoing care, we can offer vital emotional support, informaiton and general advice to help you.  We provide:

• Local support groups (there should be one near to you).  Here, you'll meet and talk with patients and carers who have been through similar experiences.
• The Pituitary Foundation National Support Office - we have a HelpLine with caring and experienced staff to offer help and further contact, provide leaflets, newsletters, etc.  An endocrine nurse HelpLine is also available six hours a week.
• Website - this holds an enormous amount of information, with many contacts, and news of local groups and meetings.
• Telephone Buddies - trained and experienced, they provide a listening ear and emotional support.  The National Support Office holds their contact details.

3. Checklist of symptoms associated with pituitary conditions

This isn't a guide to self-dianogis.  Once you are diagnosed, it may help to know other symptoms which you might experience that are associated with your condition.  Please make sure you tell your doctors about all symptoms you experience.  This will help them to treat you.

General symptoms across all conditions

• Fatigue / lack of stamina 
• Headaches  
• Low libido 
• Menstrual problems (female)
• Mood swings
• Visual Problems

Prolactinoma

• Loss of periods (female)
• Infertility
• Low or lack of libido – major symptom, often not mentioned by patient
• Weight gain – bloated stomach
• Lethargy / exhaustion, falling asleep during day
• Headaches – pressure, forehead and top
• Milk/fluid from breasts/nipples when not pregnant (male & female)

Hypopituitarism

• Most of the symptoms for Prolactinoma & DI, plus
• Flu type feelings – low or no Cortisol in body, regular colds / infections
• Hungover type feeling due to low cortisol levels
• No body temperature control –sometimes hot / cold – thyroid disruption
• Vomiting – particularly with headaches
• Mood swings – feelings of depression, or continual low mood
• Joint aches and pains – non specific
• Nightmares – poor sleep patterns
• Low blood pressure – feeling light headed
• Dislike of bright lights (with headache)

Non-functioning Adenoma (Tumour)

• Headache / head pain
• Hungover type feeling, generally feeling unwell
• Low libido / vaginal dryness
• Loss of hair / pale skin
• Sense of negativity / lack of enthusiasm
• Menstrual problems

Acromegaly

• Larger shoes, gloves, hats, collar size over time – gradual
• Headaches – crushing
• Joint pains (hips, knees etc.)
• Facial pain – changes to bite as jaw moves forward / spacing of teeth
• Sweating
• Increased weight
• Mood swings
• Testosterone / Oestrogen imbalances
• Tongue swelling / growth – speech differences -deeper voice, with possible lisping sound
• Sleep apnoea – tissue swelling in throat and snoring

Cushing's

• Weight gain to trunk of body, plus rounding of face
• Fatty hump at top of spine / back
• Flushed appearance to face and/or moon face
• Low mood, often depressed
• Loss of bone density (if left untreated over time) due to excess cortisol
• Extreme mood swings
• Weakness, possible muscle wasting
• Changes in skin pigmentation e.g., darker
• Purple striae (similar to stretch marks) on abdomen
• Hirsutism (extreme hairiness)

Diabetes Insipidus (DI)

• Passing approx 1/3 to ½ pint of water more than 6 times per day and frequently at night
• Urine is very pale, possibly clear and not concentrated
• Extreme thirst, which cannot be quenched –only momentarily
• Preference of icy cold drinks – if not preferred before
• Headaches (muzzy and ‘background', ongoing)
• Exhaustion
• Shivering and nausea
• De-hydration symptoms – parched mouth / cracked lips / discoloured tongue, dry eyes, drier skin
• Most foods intolerable with a preference to drink fluids
• Weight loss

4. Helping others to help and treat you

General Advice

Diagnosis and ongoing questions

Treatment (and who to ask)

Remember

The Pituitary Foundation is here to support you - feel free to contact us.

5. Recognising some common issues

the following issues (in no specific order of importance) may or may not relate to you, but will possibly help you in knowing that other patietns experience some of these problems too.

Consultant / Patient Relationship

Although improving, there may still be problems for some patients.  Issues include non-continuity of care; the patient may be seen by a different doctor at each clinic.  Patients can, however, request to be seen by a particular consultant upon arrival for appointment.  There may be few (if any) constructive or helpful answers to the patient's questions about their conditions.  For many, the annual check up can be unnerving (memories of being told you have a brain tumour; re-visiting hospital site, etc.), this should be recognised as 'normal' by clinicians and dealt with in an appropriate manner.

Some clinicians seem to practice 'text book medicine' and may not deviate from the general average or 'normal range' of hormone levels.  Ideally each patient should be assessed as an individual, with negotiation on both sides.

Blood test results may be delayed for an unacceptable time, and sometimes aren't acted upon as quickly as they should be (if hormone levels suggest change of dosage for instance).  Blood should be taken 3 or 4 weeks prior to your hospital visit, so that results will be recent and in front of consultant / doctor at your visit.

Access to a clinician can be difficult if you need urgent contact.  Often the carer / patient spends a frustrating amount of time phoning secretaries / GP receptions with little positive outcome.

Physical Appearance

Some patient suffer side effects from their condition or treatment.  A clinician may suggest that weight gain is due to over-eating, which can be distressing if you are having a healthy diet.  Discuss possible causes (e.g., steroid medication) with your consultant.  Acromegalics may experience problems with clothing / footwear - there are specialist retailers who can provide extended size ranges.  Radiotherapy can cause temporary hair loss in small areas - most hairdressers are experienced and empathetic in restyling for hair loss.

GPs and consultants can help you to access counselling / therapies that help overcome physical and emotional change.  The charity, Changing Faces, advises on physical appearance issues.  The British Red Cross can provide camouflage make-up for initial scarring post surgery.

GP / Hospital Communication

Patient blood test results should be conveyed to GP from hospital within 3 weeks of results being received.  This may not happen at all and your GP will have no update on your records.  GP's may not be aware of the basic hormone tests that they can carry out, to save you a journey to hospital.

Emotional Issues

Clinicans may not always understand, or recognise, the possible trauma expereinced by a patient who has recently undergone pituitary surgery.  The emotional effects can last for several years, and these can include:

• Fear of damage to your head (banging it or dropping something on it)
• Can you get water up your nose (in shower)?  Can you swim / how soon?  Can you fly abroad?  Can you resume sports / aerobics?
• Fears that any headache may be a sign of re-growth of tumour
• Reaction of others to you (knowing you've had a brain operation) - are you 'all there'; will you look different?
• There may be a problem with your relationship, due to one or more issues (e.g., loss of libido, lack of energy, physical changes)

Clinicans may not necessarily have answers to these questions.

Don't be afraid to ask for counselling or contact The Pituitary Foundation for help.  We have a list of trained Telephone Buddies who are patients (or parents or carers) and so have direct, personal experience of your particular condition.

Local Support Groups

These provide an opportunity for patients and their families / friends to chat to others and to gain useful information on services available.  Most otehr members of these local groups have probably been through similar experiences to you and can offer much support.  An endocrine nurse support HelpLine is also available.

6. Pituitary Function Testing

7. Contact Details for Other Organisations

Please see our Useful Contact Information section.

8. Important informatinfor patients on steriod medication

If your doctor has discovered that you are deficient in a hormone called cortisol and you have been prescribed hydrocortisone tablets, it is important for you to be aware of the following:

• Cortisol plays an important role in the body's response to infection, illness and stressful situations.
• Your hydrocortisone tablets must not be discontinued or omitted without appropriate medical advice.
• If you suffer any illness such as flu, a urinary tract infection or bronchitis, you need to double your dose of hydrocortisone for a few days whilst symptoms are severe and then revert to your normal dose.  Typical examples of illness or situations when doubling your steroid dose is necessary, could include:
  • Fever / flu / vomiting / diarrhoea
  • If prescribed, antibiotics
  • Dental treatment - see below
  • Surgery
  • Accident
  • Stress / Bereavement / Shock
• You may be advised to treble the dose if the illness is more serious, but this should only be under medical supervision.
• When undergoing a potentially stressful procedure such as a tooth extraction, it is also advisable to double your steroid dose on the day of the extraction and the day following.
• If you have an operation, it is very important for medical staff to be made aware you take steroids and will require a higher dose for additional cover.  They will then recommend an appropriate dose.
• If you vomit soon after taking your hydrocortisone orally, try taking the dose again.
• If you continue to vomit and are still unable to take your oral steroids, you may require an injection of hydrocortisone and you should seek help from your GP without delay - it should be stressed to the GP that you take steroids as replacement therapy.
• It is important to carry a steroid card (available from hospitals, pharmacies and area Health Authorities) and also to wear a MedicAlert bracelet or necklace in case of any medical emergency.

If you are in doubt or feel unsure whether you need extra steroid cover, ask your GP, endocrinologist, a medical staff member or contact the Pituitary Foundation's Endocrine Nurse.

How you could possibly feel if an injection of hydrocortisone is necessary:

• A general weakening throughout the body
• Unable to think clearly and rationally
• A feeling of gradually slipping away
• Light-headed and generally not 'with it'

Pituitary Foundation Recommendations

Make an appointment with either your endocrine or practice nurse for yourself and also your partner / carer, if possible, to learn how to self-administer an injection of hydrocortisone.

Holiday Time:

• When going on holiday, especially abroad, it is important that you obtain from the hospital or your GP a note / letter of confirmation that you are carrying hydrocortisone, needles and syringes for your own personal use in an emergency situation relating to your medical condition.  This should be on letterhead paper.
• Do not place your emergency kit in hold baggage, carry it in your hand luggage and tell the check-in staff and also personnel before passing through security (after Passport Control).  Have your letter of confirmation available to show them and also upon arrival at your desitation.

Take with you:

• Sufficient supplies of your regular medication to allow for any increase should you feel unwell.
• Your Emergency Kit with injectable hydrocortisone, needles and syringes (check the hydrocortisone is in date).
• Disposal container for needles
• Written checklist to remind you of the injection procedure

Please do not be unduly concerned.  It is very probable that you may never need an emergency hydrocortisone injection but The Pituitary Foundation strongly believes that you should be aware, as a last resort, of what to do if the situation should arise.

For information on how to give an emergency injection of Efortesol (liquid) or Solu-cortef (powder), please click here.

To download a Pituitary Patient Care Card that you can complete with important Emergency Medical Information and carry with you, please click on the file below:

 Pituitary Patient Care Card.pdf (99.90 KB)

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