|
(Feb 2010 Updated replacement for the Pituitary Patient Fact File) To download a pdf copy please click here (because of the size, the pdf is in two parts):  Patients Handbook - part 1.pdf (1.4MB) Patients Handbook - part 2.pdf (1.9MB) Pituitary Patients Handbook
For those seeking diagnosis, the newly diagnosed & diagnosed patient
Written by patients, for patients Contents Introduction For All Patients Part 1: For Those Seeking a Diagnosis Part 2: For Those Newly Diagnosed Treatment if a Pituitary Condition is diagnosed Emotional Issues For Those Facing Surgery Medication Names of Various Treatments Questions You may want to Ask when You Start your Treatment An Explanation of Hormones
Part 3: For Those Diagnosed Pituitary Function Tests Explained Recognising Practical & Emotional Issues The Patient & Doctor Relationship Physical Appearance Going to the Hospital for Tests Holiday & Travel Information
Important Information for Patients on Hydrocortisone When would I need to take more Hydrocortisone? How to give an Emergency Injection of Hydrocortisone How do I cope if I'm Travelling away from home with Hydrocortisone? When do I know that I would need an Emergency Injection?
Contact Details for Other Organisations Membership & Donation Forms
Introduction Perhaps this is the first time you have heard the word ‘pituitary’, or maybe you are already on your journey, knowing a certain amount of pituitary knowledge 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 it 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 and questions faced by pituitary patients remain the same. This Handbook has been produced to help you better understand your needs and entitlements, providing information to help you from pre-diagnosis onwards.
To help you find information quickly and relative to your stage of your pituitary journey, there are easy to find, clear sections, from seeking a diagnosis, through to being newly diagnosed, and then for all patients who are diagnosed and on their journey.
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 family and friends. The Pituitary Foundation offers a range of services and information to support patients and their carers: - HelpLine: 0845 450 0375 - Monday - Friday, 9:00 - 5:00
- Endocrine Nurse HelpLine: 0845 450 0377 - Scheduled hours only
- Website: www.pituitary.org.uk
- Forum (for subscribed members)
- A variety of information leaflets & GP Fact File
- Pituitary Life newsletter (for subscribing members)
- Regional Conferences
- Local Support Groups
- Trained Telephone Buddies
FOR ALL PATIENTS The Pituitary Patients Charter The Pituitary Patients Charter This charter informs you, as a pituitary patient within the UK and Republic of Ireland, about what The Foundation 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 access 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 journey will have heard of or seen the symptoms of pituitary disease during his/her career, this does not mean the effects are not genuine and deserving of medical care, together with further and appropriate investigations and treatment. The Pituitary Foundation expects all patients with pituitary disease to receive equal treatment regardless of age, gender or geographical location within the United Kingdom and Republic of Ireland. 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 coordinating all treatment, both to ensure proper diagnosis is made and for long-term care. 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 & CT scanning) should be performed in a centre where pituitary scans are carried out regularly by experienced professionals.
- Vision and visual field testing are readily available.
- Pituitary function testing to be carried out in a fully equipped investigation unit by experienced personnel, including specialist endocrine nurses where available. 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 either 'non-functioning' or 'hormone secreting' tumours.
- An experienced histopathologist, with a specialised pituitary or endocrine interest, should perform laboratory testing.
- Access to a 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 patient support organisations, such as The Pituitary 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 the criteria for social benefits, for example: free prescriptions.
PART 1 - FOR THOSE SEEKING A DIAGNOSIS Seeking a Diagnosis You might have been suffering from unexplained symptoms for some time, which you believe might be linked to a pituitary problem. Your GP will probably be the first point of contact, but in some cases your optician, dentist or other clinician may have been consulted and referred you to your GP for further tests. As pituitary conditions are considered quite rare, your GP may not have come across another patient in their practice and may investigate other more common conditions (for example: diabetes mellitus, migraine, and menopause) before considering pituitary. You might have visited your GP already, on a number of occasions, and perhaps have been told that your symptoms are, or could be, due to more common illnesses. The suggestions given below could be helpful for you when approaching your GP. General suggestions when seeking a diagnosis Write down a list of your symptoms as they present, and dates if possible that they began, and take notes of the outcome of your visit. If you can draw a simple graph, showing months down one side and symptoms along the bottom, it gives an obvious and speedy indication to your doctor of how often and when the symptoms occur. Take photos of how you were/looked before you became ill, to show the doctor of physical effects and changes as a comparison. Take a friend or family member with you to your consultations, so they can give the doctor any information you may not recall. Also, they may remember more of what the doctor says and could take notes. Make a list of any medicines you take - including alternative therapies and vitamins. List any family illnesses or conditions e.g., TB, heart disease, diabetes, etc. Have an eye test with your local optician. Be positive about your visit. The GP is there to help you and good communication is essential.
If you are dissatisfied, it may be possible for you to see another GP within your practice.
Suggested Questions to Ask Your GP As my periods have stopped (and I’m not pregnant / breastfeeding / menopausal) could you test my Prolactin level? Mention also if you have any loss of libido or crusting and/or milk production from your nipples. I’m feeling cold, tired and gaining weight, even though I’m not eating more, could you test my thyroid levels? I have flu-like symptoms, sometimes suffer a ‘hangover’ type feeling and suffer minor infections regularly; is this related to my Cortisol production and could you test my cortisol? My joints are aching, my family have noticed an increase in the size of my hands and feet and I have facial changes " could I possibly have excess Growth hormone? (It is a good idea to show your GP a series of photographs of yourself over a period of years, if you feel your features have altered considerably.) The headaches I experience are not of the type I’ve ever had before. I don’t believe they are migraine, as they feel like…(explain where the pain is, how long it lasts, and if it makes you feel, or be, sick) I am passing urine every (however many) minutes, and cannot quench my thirst that is present 24 hours. My mouth is parched - please look at my tongue / lips. I don’t have a water drinking habit. If you test for Diabetes Mellitus and this is clear, could you consider Diabetes Insipidus? I realise that I am consulting you on a regular basis and would understand if you felt my symptoms were ‘in my mind’, as they are varied and could be matched to many common conditions. I’m struggling with daily life as I’m feeling so unwell and I would appreciate some pituitary hormone testing, as these tests haven’t been carried out to investigate the cause of my problems. My vision is unusual - I’m having difficulty seeing out of the sides of my eyes. I don’t wear glasses, nor have optical checks, so should I see an optician and report back to you? I’m putting on weight, have excessive facial hair, have a fatty hump at the top of my back, have stretch marks and suffer awful mood swings - could this be Cushing’s, and could this be checked with a cortisol blood test?
If your GP has a computer in their examination room, you may wish to direct them to The Foundation’s website: www.pituitary.org.uk.
Along the left side menu is a section called, ‘For Medical Professionals’ with a sub-section entitled, ‘Medical Information’.
In this section is our GP Fact File which is written by endocrinologists for GPs, it is easy-to-read, to-the-point and thorough. It includes presenting symptoms, investigations, possible treatments, management, watch points and questions patients may ask. It also includes links and references to more specialist information. This could be an excellent resource for your GP to use as they are assisting you with diagnosis. |
Check List of Symptoms Associated with Pituitary Conditions This isn’t a guide to self-diagnosis; it is a list of symptoms which other patients have experienced. You may suffer from none of these, a few, or many of them. Once you are diagnosed, it may help you to know about other symptoms which you might experience that are associated with your condition. Please make sure you tell your doctors about all symptoms that you experience. This will help them to treat you. Acromegaly - Increased shoe size, gloves, hats, shirt collar, over months or years
- Headaches
- Joint pains
- Facial pain - changes to bite as the jaw moves forward and/or spacing of teeth may change
- Sweating
- Increased weight
- Mood swings
- Tongue grows
- Speech differences- i.e., deeper voice, with possible lisping sound
- Sleep apnoea - snoring with episodes of interrupted catching of breath
CUSHING’S Weight gain to trunk of body, plus rounding of face Fatty hump at top of spine/back Flushed appearance and roundness of face Low mood, can feel depressed Loss of bone density (if left untreated over time) due to excess cortisol Extreme mood swings Weakness, possible muscle wasting Darkening of skin pigmentation Dark purple striae - similar to stretch marks on abdomen and tops of thighs Hirsutism (extreme hairiness)
DIABETES INSIPIDUS (DI) - Passing excessive urine much more than usual during the day and frequently through the night
- Urine is very pale, possibly clear and doesn’t concentrate
- Extreme thirst, which cannot be quenched
- Preference of icy cold drinks
- Headaches (which may be due to dehydration)
- Exhaustion
- Shivering
- Nausea
- De-hydration symptoms - parched mouth, cracked lips, coated tongue, dry eyes and dry skin
- Most foods intolerable with a preference to drink fluids
- Weight loss
HYPOPITUITARISM (can include cortisol, growth hormone and thyroid deficiencies) Flu type feelings - low or no cortisol in body, regular colds and/or infections ‘Hung over’ type feeling without having drunk alcohol No body temperature control - either feeling too hot, or too cold Nausea Mood swings - feelings of depression, apathy or low mood Joint aches and pains, and/or poor muscle tone Exhaustion Constipation Difficulty finding words Poor sleep patterns Low blood pressure - feeling light-headed Pale pallor
Prolactinoma Loss of periods (female) Infertility Low or lack of libido - prominent symptom, often not mentioned by patient Weight gain - bloated stomach Lethargy/exhaustion, falling asleep during day Headaches Milk/fluid excreting from nipples when not pregnant (males can have this too)
Referral to an Endocrinologist (a consultant who specialises in hormones) If your GP suspects a pituitary problem, he/she should refer you to an endocrinologist for further investigations. It is very important and we strongly recommend that you be referred to an endocrinologist who specialises in pituitary conditions. At your first appointment with an endocrinologist, it is usual for the following things to happen: A full medical history will be taken - lots of general health questions e.g., 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 tests are 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 for his files. 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 or friend with you to this, (and any future) appointments. It is also a good idea to jot down (and take with you) notes of symptoms you wish to discuss in case you forget during the consultation.
Please note: - Almost all pituitary tumours are benign - they are not cancer - however, many still require treatment
- It is highly unlikely that any visual problems will deteriorate further, and it is more likely for your sight to improve following treatment.
PART 2 - FOR THOSE NEWLY DIAGNOSED 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 treatment (if any required) will be started. This may include any of the following: - Hormone treatment - sometimes medication and/or replacement hormones are given, and the
endocrinologist will monitor your levels with regular blood tests. - Surgery - the endocrinologist works in conjunction with a neurosurgeon (usually based 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 recuperation period afterwards. You will be able to discuss any problems or fears you have at this time.
- Radiotherapy - this may be given instead of, or following surgery - or later if it is necessary. This is procedure carried out at a specialist centre (nearest to your home) and can be used to complement surgery. Having radiotherapy does not mean that your Pituitary tumour is malignant (or cancerous).
Emotional Issues - For Those Newly Diagnosed Being diagnosed with a pituitary condition can sometimes take months or even years, causing suffering physically and emotionally. Although rarer, there are some people who might be diagnosed suddenly due to a much more rapid and dramatic onset of symptoms. A sudden diagnosis (and possible emergency treatment) can of course cause shock and trauma. Often, the word ‘tumour’ will be used when you are diagnosed - this term can be a great shock, unless it is explained to you properly. Hearing the words ‘brain surgery’ or perhaps ‘neurosurgeon’ may be very frightening for you. Add to all of this, learning that you will have a long-term (or life-long) condition, which may mean you having to take medication for the rest of your life, this could all very well have an immense impact emotionally on you and your family. Clinicians may not always understand, or recognise, the possible trauma experienced by a patient who they have recently diagnosed. They may simply not have the time within the clinic to address your fears, or perhaps because they are familiar with pituitary disease, they don’t think of a diagnosis as being something that anyone should be unusually traumatised about. However, feeling shocked, frightened or anxious are common experiences which many others felt when they were newly diagnosed. You even might be feeling so shocked that you just want to get out of the clinic, without attempting to ask any questions. We recommend that you read our leaflet Psychological Impact of a Pituitary Condition: Diagnosis and Treatment which aims to offer strategies to deal with these emotional issues. For Those Facing Surgery The mere thought of having to have surgery in their brain can of course be concerning for many patients. From what we hear from other patients, who have had their surgery, is that generally the operation and the experience surrounding it, was not anywhere near as awful as they had anticipated. A specialist pituitary surgeon will be operating on you (a surgeon who is used to carrying out pituitary surgery) plus a team of nursing staff, who are expertly trained, to care for you before and after your surgery. If you have any questions about your operation, the surgeon or nurses will answer these. Please see our leaflet called Surgery & Radiotherapy too. Some patients mentioned that following their surgery, a few things which concerned them were: Fear of damage to the head (banging it or dropping something on it). Questions such as, can you get water up your nose (in the bath, or shower); can you swim, and how soon; can you fly abroad; can you resume your usual sports? Fears that any headache, even a twinge, may be a sign of re-growth of tumour. Reaction of others to you (knowing that you’ve had a ‘brain operation’) - are you ‘all there’; will you look or act differently? There may be problems within your relationship, due to one or more issues (e.g., loss of libido, lack of energy, physical changes).
You can contact The Pituitary Foundation for help at every stage of your journey. We have a list of trained ‘Telephone Buddies’ who are patients (or carers) and so have direct, personal experience of your particular condition. Some patients find it helpful to attend a local support group meeting so they can talk to fellow patients who also have personal experience. The Foundation also has a ‘Well-being’ series of leaflets. As mentioned above, for those newly diagnosed, having or, just had surgery or beginning treatment, we recommend our leaflet called The Psychological Impact of a Pituitary Condition: Diagnosis and Treatment. Medication Names of Various Treatments If you have been given medication to take, this section explains the various names of medication; for what pituitary condition they are given and how they are taken, i.e., tablets, injections, patches, gels, etc. Please Note: A more comprehensive list of treatments is available on our website. Questions You May Want To Ask When You Start Your Treatment (...and Who to Ask) It can be difficult to know what questions to ask, or who you ask, especially as you might not have much information about what is going to happen to you at this point. The questions below will be a guide for you to begin discussion with your endocrinologist and/or GP. Do I have a choice of surgery, radiotherapy or medication and what do you believe would be the best course of action for my particular condition/tumour? (to endocrinologist) Do I have any choice of hospital, surgeon or radiotherapy department? (to GP, endocrinologist or Pituitary Foundation) Will I remain on replacement hormones for life and how often will I be monitored? (to endocrinologist) What part will my GP play, with regard to carrying out tests, prescribing my medication and caring for me post surgery? (to endocrinologist) Will my GP receive my results from your clinic and in what time frame? (to endocrinologist) If you are taking hydrocortisone: I have heard about a ‘cortisol day curve’ test; is it appropriate for me to have this test to make sure that I’m on the correct dose? (to endocrinologist) Note: this applies if your levels of cortisol are monitored by blood tests only. I haven’t felt much benefit from my current dose of thyroxin (after 3 months) can I be tested in case the levels aren’t correct? (to GP or endocrinologist) If you are a DI patient: Could I have regular sodium (and possibly potassium) tests - 6 or 12 monthly? (to GP or endocrinologist) I still experience extreme headaches since my surgery; can you investigate these as I’m taking strong painkillers regularly? I’m having problems with my jaw, these may be related to my headaches; could I see a maxillofacial consultant (a specialist in face, jaw mouth & neck problems) and have an x-ray? (to GP)
An Explanation of Hormones - where they are secreted from and what they do The Pituitary Gland 
The Endocrine system 
Hormone Anterior (Front Part) | Target | Function | Adrenocorticotrophic Hormone (ACTH) | Adrenals | Stimulates the adrenal gland to produce a hormone called cortisol. ACTH is also known as corticotrophin.
Cortisol promotes normal metabolism, maintains blood sugar levels and blood pressure. It provides resistance to stress and acts as an inflammatory agent. Cortisol also helps to regulate fluid balance in the body. | Thyroid stimulating hormone (TSH) | Thyroid | Stimulates the Thyroid Gland to secrete its own hormone called Thyroxine (T4). TSH is also known as thryrotropin. Another hormone produced from the thyroid is called tri-iodothyronine or T3. Thyroxine controls many bodily functions, including heart rate, temperature and metabolism. It also helps metabolise calcium in the body. | Lutenising Hormone (LH) And Follicle- Stimulating Hormone (FSH) | Ovaries (females) Testes (males) | Control reproduction and sexual characteristics. Stimulate the ovaries to produce oestrogen and Progesterone and the testes to produce testosterone and sperm. LH and FSH are also known collectively as gonadatrophins.
Oestrogen helps with growth of tissue of the sex organs and reproductive parts. It also strengthens bones and has a positive effect on the heart.
Testosterone is responsible for the masculine characteristics including hair growth on the face and body and muscle development. It is essential for producing sperm and strengthening the bones. | | Prolactin | Breasts | Stimulates the breasts to produce milk and is secreted in large amounts during pregnancy and breastfeeding. It is however present at all times in both males and females. | | Growth Hormone (GH) | All cells in the body | In children this hormone is essential for a normal rate of growth. In adults it controls energy levels and well-being. It is important for maintaining muscle and bone mass and appropriate fat distribution in the body. | Hormone Posterior (Back Part) | Target | Function | | Antidiuretic Hormone (ADH) | Kidneys | Controls the blood fluid and mineral levels in the body by affecting water retention by the kidneys. This hormone is also known as Vasopressin. | | Oxytocin | Uterus Breasts | Affects the uterine contractions in childbirth and the subsequent release of milk for breast feeding. |
Once you are diagnosed, or have been a patient perhaps for some time, you should find the following sections helpful on your journey. Pituitary Function Tests Explained At the start and throughout your journey, your hormone levels will be monitored through various tests. By regular testing, your clinicians are able to understand how your hormones are working (or not) and ensure you are appropriately treated. The following sections shows all of the usual tests carried out, but please note that you might not require all of these tests. Name of Test | What Hormone
it Tests? | Condition it
is Tested For? | How the Test
is Given? | What do the
Results Mean? | How Might I Feel? | Regularity of
this Test | ACTH | ACTH tested
directly | Cushing’s (excess
cortisol)
Or
Hypoadrenalism
(low cortisol) | Blood sample
taken first thing
in the morning | Deficiency
of ACTH;
underactive
pituitary;
raised/ over
production | Normal.
Blood test
but needs to
be done at
hospital | When
endocrinologist
feels it is
necessary | Dexamethasone
Suppression | Cortisol | Excess cortisol
production | Tablet taken at
midnight; blood
test the following
morning | Normal
individuals
suppress
cortisol levels | No side
effects | To aid diagnosis | Synacthen
(stimulation test) | Cortisol | Low levels of
cortisol | An intravenous
injection, then a
blood test | Poor response
shows cortisol
deficiency | No side
effects | Varies as to how
often repeated.
6 monthly,
annually
dependant
on individual
circumstances | Day curve | Cortisol and
other hormones
e.g., growth
hormone | Those on
hydrocortisone,
test done to assess
adequate levels
achieved pre and
post medication | Taking your usual
doses, blood is
taken several
times a day | Shows under
or over
replacement
with
medication | No side
effects | Varies. Dependant
on your centre/
consultant | FSH | Follicle
Stimulating
Hormone | Stimulates
production of
sperm in men;
stimulates follicle
development
in the ovary for
women | Blood Sample | Depends on
age and timing
of menstrual
cycle ( pre/
post/ mid) | No side
effects | Varies | Glucose Tolerance | Growth
Hormone | To diagnose
Acromegaly | After a sugary
drink, bloods
are taken at 30
minute intervals
for 2 hours | Normal
Individuals
suppress GH
levels | Nausea,
Headache -
although
not always! | To make diagnosis
and for review
purposes; timings
vary in centres | IGF-1 | Synthetic
growth hormone
replaced
patients.
Tests IGF1 | To monitor
baseline and
reviews for
patients on
replacement GH | Blood Sample | Guide to overall
circulating
levels of GH
in the bloodstream | No side
effects | Varies but at least
annually when
established on GH
replacement | Insulin Stress | Gold Standard
Test to assess
pituitary
function for
cortisol and GH | To assess correct
levels of cortisol
and GH | After an injection
of insulin, blood
is taken every
30 minutes for 2
hours | Body should
respond when
under stress
by secreting
cortisol and GH.
Lowering the
blood sugar
causes stress | Because
blood sugar is
lowered you
may feel dizzy
and nauseous,
sweaty, clammy
disorientated,
heart racing.
These effects
are short acting | Post operative:
To assess pituitary
function.
Diagnosis GH
deficiency | LH | Luteinising
Hormone | Acts on testes
to stimulate
testosterone
in men; acts
on ovaries
to stimulate
oestrogen in
women | Blood Sample | See FSH | No side
effects | Varies | Oestrogen | Oestrogen
(females) | | Blood Sample | See FSH | No side
effects | Varies | Testosterone | Testosterone
(males) | | Blood sample:
Morning sample
most accurate | Diagnosis
deficiency | No side
effects | Varies, but
required for
review purposes | Water
Deprivation | ADH
Anti Diuretic
hormone
Serum and
Urine Osmolality
(ability to
concentrate
Urine) | Diabetes
Insipidus | Patient deprived
of any fluids for
approx 8 hours.
Blood is taken,
weight checked
and urine tested
at regular
intervals | Specialist
Interpretation
Required | If you have
DI this test
can be very
uncomfortable
as you cannot
drink anything | Diagnostic only |
Preparation for Blood Tests I am often asked for advice on the HelpLine regarding whether or not to take medications prior to a clinic visit. In most cases you should continue to take your medications as normal but, if in doubt, check with your own clinic to be on the safe side. General Guidelines If you are told to FAST prior to your test, this is usually from 10:00pm the night before. Usually, this means plain water only but this should be clarified with your nurse/doctor Routine testing of Pituitary Hormones, e.g. thyroid function and prolactin, etc., does not require any special preparation prior to blood samples being obtained. Post-Pituitary Surgery Testing Usually, you will be called back to your Endocrine Clinic approximately 6 to 8 weeks after surgery to assess pituitary function and the production of your hormones. If you are on hydrocortisone replacement therapy, we have to assess whether you need to continue with this medication. Some centres will require you to be an inpatient for a couple of nights to carry out this assessment; others simply see you as an outpatient. When carried out as an outpatient you will probably be advised to stop your steroid medication from teatime the night before your appointment and to omit your morning dose. This enables assessment of your body’s ability to naturally produce its own cortisol.
Men who are on testosterone replacement gels are advised to omit their gel the morning that they are going to attend the clinic; this enables us to get a clear picture of the trough levels of testosterone prior to application. It is often helpful for men on Nebido or Sustanon injections, to have their blood levels taken PRIOR to some of the injections. This is to assess that you have adequate circulating levels of testosterone in the bloodstream. The frequency of the blood testing will be advised by your consultant. Day Curves and Profiles These tests can be carried out on occasions to assess the levels of a certain drug or hormone in your bloodstream. The time interval for this can vary from a few hours up to 12 hours. Generally when this is carried out, the procedure is to have a blood sample obtained prior to consuming your medication and then timed intervals thereafter e.g. ½ hourly or hourly. Then again, prior to the next dose and so the procedure continues. This allows us to assess if the circulating blood levels are within a therapeutic range or not. When attending for lengthy or prolonged tests e.g., Insulin Stress Test, it is advisable to get driven to and from the hospital. Again, individual centres will advise you on this. PLEASE! PLEASE! Do ask at your own clinic for advice pertaining to your own personal tests. One simple phone call can often prevent a wasted appointment for you or the doctors and nurses involved. Recognising Practical and Emotional Issues The Patient and Doctor Relationship 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 patients experience some of these problems too. This relationship can feel unequal to many people. Being a patient and realising you need medical care can be distressing for an individual. You may also feel powerless and you could have expectations that the doctor becomes the powerful one in the relationship. When the doctor is thought of as powerful, the patient’s expectations, both realistic and unrealistic, can develop. Remember that the doctor may know more about medicine than you, but you know more about your symptoms and the difficulties that you are experiencing than the doctor. If you do have unrealistic expectations, you may think that the doctor should realise your concerns, needs and symptoms without you having to communicate these. If the doctor doesn’t meet these unrealistic expectations, you may then feel ignored, misunderstood and alone. However, if you have realistic expectations together with feeling able to assist the doctor in your care, this can achieve benefits for both of you to pave the way for good relations and exchange of information. It is good to remember that the doctor is a human being too. Although patient care is improving, there may still be problems for some patients. Issues include non-continuity of care, i.e., the patient may be seen by a different doctor at each clinic visit. Patients can, however, request to be seen by a particular consultant upon arrival for their appointment. This might not be possible or this may mean you will have a longer wait, so be prepared (i.e., bring a book or magazine to fill your time). For many, the regular check up can be unnerving (memories of being told you have ‘a brain tumour’, re-visiting the hospital site, etc.). It could be helpful (both to you and the doctor seeing you) if you briefly explain why you are anxious or upset at attending clinic. 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). It is helpful if your blood can be taken 3 or 4 weeks prior to your hospital visit so that results will be recent and in front of the consultant or doctor at your visit. Ask your consultant for a blood test form before you leave the clinic. Access to a clinician can be difficult if you need urgent advice. If there is an endocrine nurse at your endocrine clinic you can contact her/him or contact your GP. Physical Appearance Some patients suffer side effects from their condition or treatment. Your clinician may suggest that weight gain is due to overeating, which can be distressing if you are eating a healthy diet. Discuss possible causes (e.g., steroid medication or thyroxin doses) with your consultant. Acromegalics may experience problems with clothing and/or footwear. There are specialist retailers who can provide extended size ranges (you can contact The Foundation for information on retailers). Radiotherapy may cause temporary hair loss in small areas but most hairdressers are experienced and empathetic in restyling for hair loss so don’t be afraid to explain to your hairdresser what your needs are. GPs and consultants can help you to access counseling 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. For more information on these and other organisations, please see our links at the end of this Handbook. The Foundation has a wide range of leaflet available, including our Well-being series; the leaflets below could be of help to you: Going in to Hospital for Tests Short stay tests
Some tests are carried out over several hours during the day and would usually begin in the morning. There will be a bed or comfortable arm chair provided for you, and you should be allowed to take someone with you for company. For these tests you won’t need to take your nightwear with you, as you’ll stay in your clothes throughout. Comfortable clothing is advised, with something to read. Refreshments and drinks are provided as the test allows, and certainly at the end of the test. If you are having a more intensive test, you might not feel like driving or getting public transport home - ask someone if they can pick you up. At least the day before you go, it is advised to ask the endocrine unit who will be testing you, if you should take your usual medication at home, for the evening before and on the morning of the test. Also ask if you can eat and drink normally prior to the test; if you aren’t allowed to, ask for specific times you should not eat and drink and when you can start eating and drinking again. For in-patient stays
Patients shared their tips on things to take with them to make the experience as comfortable as possible. These included: Three pairs of pyjamas or nightdresses,
and/or tracksuit bottoms and loose tops
for comfortable day gear | Lots of drinks (non-alcoholic naturally, Lucozade
or squash) | Lightweight dressing gown | Soft / balm tissues - LOTS - “the hospital will
provide but they are a bit rough” | Slippers with non-slip soles | A cheap pair of flip flops for use in the shower | Toothbrush and toothpaste | Cardigans are better than over the head sweaters
- in case it gets a bit chilly | Brush or comb | Nibbles that don't make a mess in your bed | Face, or baby wipes | Sweets / mints | Earplugs (wards can be noisy) | Books / puzzle books | Eye mask (keeps the bright ward lights out) | Two or three pens | Notebook and pen | List of phone numbers | Change for buying newspapers, drinks, etc. | MP3 or an old CD player and two or three
of your favourite CDs | Small tin of Vaseline or balm (for the lips) | A couple of cuddly teddies (optional) | Sanitary items (for ladies only), if required | Don't take jewellery (including wedding rings) |
And some suggestions from other patients: “Go out and buy a nice light perfume or body spray. Not your usual one, because you will probably always associate it with your stay in hospital, so if you throw it away afterwards, it doesn't matter. It makes you feel so much better having a quick 'spritz'. The other daft things I did were things like taking a face pack in with me for when feeling better post-op. I could convince myself it was a spa not a hospital. Being in my own room helped with that one!” “Designate one person to ring the ward and have a cascade system for letting people know how you are doing. Organising things like that before hand can give you a sense of control.” “Plan something for afterwards. After my hysterectomy, a dear friend came to visit. I was two days post-op and feeling awful and she TOLD me I was going on a trip with her school to a Tapas bar in five weeks time. Seems an odd school trip, but they had been taking Spanish lessons!! Seemed impossible, but I was determined. I went, had a great time with all the children and was so glad I had set myself an achievable target.” “If someone says 'can I do anything?' say yes!! Helps you and makes others feel very worthy. A friend cleaned out my rabbits - just what I needed!” “I had one day when I was visited by work mates, friends and family - not a good idea and hubby was annoyed as it completely tired me out - stagger the visitors!!! DEFINITELY needed a couple of pens and someone bought me a beautiful journal to keep notes in which were handy when the numerous consultants bombarded me with info.” “I took a photo in of the family and had it on my bedside trolley which was nice to look at.“ “Don't wear nail varnish to theatre as the nail bed gives a good indication of the circulation, especially immediately post-op as you are waking up. Face make-up is not a good idea either. The anaesthetist needs to see your normal colour. It has been known for patients to come to theatre with the full works, including hair spray!! Someone forgot to tell them it was an operating theatre they were going to!!” Holiday and Travel Information It is important that you are able to enjoy a holiday without having undue concern about your pituitary condition. These are some tips to help you whilst travelling: When going on holiday, especially abroad, it is important that you obtain from the hospital, or your GP, a letter of confirmation that you are carrying medication, including hydrocortisone for injecting, needles and syringes for your own personal use in an emergency situation relating to your medical condition. This should be on the hospital or GP’s letter headed paper. Do not place your hydrocortisone emergency kit, Growth Hormone, or any of your medications in your hold baggage - always carry them in your hand luggage. Make sure that you carry your medication in the original pharmacy container it was given to you in by your chemist - with your name on any separate container. Tell the check-in staff and also airport security personnel before passing through security (after Passport Control) that you are carrying necessary medications. Have your letter of confirmation available to show them and also have it ready upon arrival at your destination. It is important to note that airport policy takes priority over airline policy, i.e., if the airline check-in counter personnel tells you that you can carry needles, etc. the airport security may have an issue with this. Be certain to make sure you are covered for both the airline and airport policies by checking their websites or phoning. Take sufficient supplies (7 to 14 days extra amounts) of your hydrocortisone to allow for any increase should you feel unwell, journeys are delayed, or (rarely) if luggage is mislaid. Also take spare supplies (several days) of any other medication you take. Be certain to take disposal container for any needles you use. Have a written checklist to remind you of the hydrocortisone emergency injection procedure - please see our Hydrocortisone Advice Leaflet below. If you take Growth Hormone, you can store this quite safely whilst travelling in a cool bag with frozen blocks inside until you reach your destination. It is advised to ask if there is a refrigerator in your holiday accommodation, or if there isn’t, could you store spare freezer blocks in a hotel freezer (for example). If you can use a freezer, it is best to take spare freezer blocks in your luggage, for rotating the blocks in order to keep your medication cool all of the time in your cool bag. Again, it is recommended that you arrange this before travel. Carry a Toilet Access Card with you if you have Diabetes Insipidus (these can be obtained from The Pituitary Foundation). Take and wear your medical information talisman at all times during your journey and stay. For further information about medical talisman, and companies providing these, please click here. The Foundation provides a Patient Care Card which will be helpful too. Please contact us at helpline@pituitary.org.uk or 0845 450 0375 for your card.
PART 4 - FOR THOSE PATIENTS ON HYDROCORTISONE IMPORTANT INFORMATION FOR PATIENTS ON HYDROCORTISONE HYDROCORTISONE Advice for the Pituitary Patient What is Hydrocortisone? Hydrocortisone is a steroid hormone produced by the adrenal gland. It plays a complex role in regulating body functions and is essential for survival. Hydrocortisone is taken as a replacement for the natural hormone where this is deficient, either because there is a failure of hydrocortisone production by the adrenal gland (Addison’s disease), or pituitary deficiency of ACTH (the hormone that stimulates the production of hydrocortisone by the adrenal gland). Replacement therapy is also required for people
who have congenital adrenal hyperplasia, which is a birth defect. Hydrocortisone is available as tablets under the trade name Hydrocortone, containing 10mg or 20mg. An injection containing 100mg Hydrocortisone is available for emergency situations. For children there are lower dose emergency injections available. How do I take it? The usual dose is 15 - 20mg orally split over two or three times daily, and depending on your individual endocrinologist’s recommendations. For example: 10mg before rising, 5mg at mid-day and 5mg no later than 6pm. How can I let others know I take replacement hydrocortisone? When you are prescribed your medication you will be given a ‘blue steroid card’ from the hospital to carry. The Pituitary Foundation suggests that you purchase and wear a medical necklace or bracelet, such as MedicAlert to show your cortisol replacement therapy. Further, The Pituitary Foundation has a Patient Care Card which is small enough to fit in your bag, or pocket and displays your hydrocortisone needs and information on emergency replacement should you need this. Please contact us if you would like a Care Card; an A5 size SAE with a second class stamp would be appreciated. Emergency Injections - should I have these at home? The Foundation does recommend all patients taking hydrocortisone to have a 100mg injection kit in their home for emergency use only. If you don’t have one of these already, you can ask your GP, or endocrinologist if they will prescribe this for you. If you have difficulties in obtaining a prescription, we have information available to help you. Please check regularly that these preparations are not expired. Below are clear instructions on how to inject yourself, or for a relative to do this. Some endocrine clinics will help to show you how to inject, in an emergency. If you are in an emergency situation and need an ambulance or medical help, we advise that you (or your carer) use the words ADRENAL CRISIS about your HYDROCORTISONE needs. This term is more widely understood and acknowledged within the medical community. When would I need to take more Hydrocortisone? If you become ill then the body would naturally increase the output of steroid from your adrenals. Therefore if you are taking replacement steroid (hydrocortisone) it is essential to mimic the natural response by increasing your dose appropriately. | Illness or Stress Situation | Increase of Usual Dose | For how long? | Is this an emergency, or when do I seek help? | | Cold with no fever | None Necessary | | | Vomiting - more than once Also, diarrhoea and severe illness | Emergency 100mg injection if extra dose of 10mg-20mg tablets can't be kept down | For duration of fever | See GP if still unwell after 48 hours | | Surgical Procedures | - Minor (e.g. tooth extraction) 20 mg before procedure
- Small op (e.g., hernia) 100mg injection every 6 hours for 24 hours
- Major op (abdomen/chest) 100mg injection or iv every 6 hours for 24-72 hours depending on op, or at least until patient adequately eating and drinking but in any doubt continue for 72 hours
| (Minor/Small op) Resume on usual dose immediately after (Major Op) Reduce rapidly to usual dose | Phone GP, or go to A&E. If you have injection at home, you, a relative (if able) or GP can adminsiter this. Also an anti-sickness injection may be needed | | Colonoscopy and Barium Enema | Double your usual dose the day before, when the bowel is cleaned out. For colonoscopy only - 100mg injection 30 minutes before procedure to be given by doctor. Double dose day after. | Take usual dose on morning of procedure | Drink lots of water to prevent dehydration. Tell the doctor before procedure that you take hydrocortisone | | Cystoscopy | Double your usual dose day of procedure | Resume as normal | Tell the doctor before procedure that you take hydrocortisone | | Severe shock, (e.g. bereavement or road traffic accident) | 100mg injection, or take 20mg as tablets if able | See GP or hospital for further advice | Sudden and severe shock may be classed as emergency - seek medical attention if in doubt | | Long haul flight over 12 hours | Double usual dose on day of flight | Extra dose every 6-8 hours when day is lengthened / Usual dose in timing with sleep/wake cycle when day is shortened | We suggest you speak to your consultant before travel | | General stress, exams, etc. | Not usually required | | As GP if concerned |
How do I cope if I'm travelling away from home with Hydrocortisone? If you are going on holiday abroad you should ask your GP or Endocrinologist for a letter about your medication and your doses prescribed. This letter will be helpful should you become unwell and have to see a doctor. It is also useful for you to have this letter whilst going through airport security, in the event that they question your medication. If you have a repeat copy prescription this can also be shown. It is suggested that you have a 100mg injection kit (see above) whilst you are travelling abroad, in case of emergency. This injection should be placed in a small cool bag, labelled with your name and kept with you at all times during your journey. At check in they will ask if you are carrying anything sharp (i.e. needles) please mention if you are carrying injection needles for your medical condition. At your destination if there is no refrigerator in your accommodation, the hotel may freeze your freezer blocks for you, so do take some spare in your luggage to change around regularly in your cool bag. It is wise to take an extra 2 weeks supply of hydrocortisone tablets with you in case you need to increase your usual dose whilst away. All medication should be kept in your hand luggage. If you have any doubts whatsoever regarding airline or airport security and procedures, please telephone the airport or airline before you go. When do I know that I would need an Emergency Injection? If you cannot absorb your tablets, or your usual replacement wasn’t sufficient for an acute shock or illness, then gradually or perhaps quite quickly you would feel weak, sickly and light headed. The cortisol clock below gives approximate times of need for emergency medical help and replacement. 
Please click here for the Contact Details of Other Organisations.
The information provided throughout this handbook is general information only. All patients
are different and if you have any questions, please contact your consultant or GP. This leaflet was funded through generous donations given in memory of Sally Joshua ©2010 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.
Did you find this information useful? This information has come to you through the kind support of our donors, many of them pituitary patients and carers of pituitary patients. If you would like to help to ensure that this service continues to be available, please contribute by clicking on the button: 
Your donation will be secure and GiftAid will be assessed for UK taxpayers, increasing your donation by up to 28%. Or send a cheque, payable to The Pituitary Foundation, to: The Pituitary Foundation, PO Box 1944, Bristol, BS99 2UB. Please help us continue to provide crucial information to the pituitary community by donating today. [back to Leaflets menu]
aaa
|
