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The Pituitary Foundation Information Booklets Living with hypopituitarism For young adults and teens

The questions you ask about diagnosis, treatment and replacement

Working to support pituitary patients, their carers & families About this booklet Why me; did I do anything wrong? This booklet offers answers to common questions about living with hypopituitarism as a teen and young adult. We hope it will help you to better understand your condition and support you in talking about this with your family, friends, and health care It’s quite normal to ask these questions. Diagnosis can seem a bit overwhelming team. Some pituitary conditions can be and you will be confronted with all these Understanding your condition and taking congenital (you were born with it) whilst new medical terms. Remember, your family an active part in its management can help others can occur during childhood, in and friends will be learning with you too. It’s you cope with any health issues you might your teens or as an adult. You certainly bound to feel a bit strange at times but just encounter. wouldn’t have done anything wrong to take one day at a time and remember that cause your condition. you’re not the only one going through this and that help and advice is available. Why me; did I do anything wrong? 3 Where is my ? 4 Effects of having hypopituitarism 5 What causes hypopituitarism? 6 Treating hypopituitarism 7

Treating your tumour 9

Managing hypopituitarism day-to-day 11

Social life 15

Sex and relationships 17 Membership form 19

2 Living with hypopituitarism for young adults and teens Living with hypopituitarism for young adults and teens 3 Where is my pituitary gland? Effects of having hypopituitarism

The Pituitary & Hypopituitarism means that one or Symptoms can include, over a variety of more of your pituitary hormones is deficient hormones: not working (deficient). The amount of l Growing less well Cerebrum deficient hormones will vary between l Putting on weight despite eating the same individuals. l Feeling cold when everybody else is warm The of hypopituitarism l Generally feeling a bit tired depend on which of the pituitary gland l Feeling sickly, weak or light-headed hormones are involved, to what extent and l Weeing and drinking a lot, even through for how long. Symptoms may be slow to the night and your wee is always pale appear and vague, which may also mimic l Starting puberty before age nine or you Hypothalamus other more common illnesses. have no signs of puberty at age 13 l Fertility problems Pituitary Cerebellum

Brain Stem The pituitary gland and other glands

Cerebrum

Pituitary The pituitary gland sits in a bony gland hollow called the pituitary fossa. This is behind the bridge of the nose and gland below the base of the brain, close to the optic nerves. It is usually about the size of a pea and consists of two parts (often called lobes) - a Adrenal front part, called the and a glands back part, called the posterior pituitary. Kidneys It is often considered the most important part of the endocrine system because it produces hormones that control many functions of other endocrine glands. Testes

4 Living with hypopituitarism for young adults and teens Living with hypopituitarism for young adults and teens 5 What causes hypopituitarism? Treating hypopituitarism

There can be several causes, which are occurring in children under 16 years. All of the hormones produced by the having hypopituitarism. Replacement is explained below: : Although these are the pituitary gland (e.g. growth with to relieve symptoms, and least common cause of hypopituitarism in and anti-diuretic hormone) and those young adults often use DDAVP Melts. Congenital hypopituitarism childhood and adolescent age groups. produced by the glands controlled You might have been diagnosed with Surgery or radiotherapy: This treatment by the pituitary gland (e.g. , Thyroid stimulating hormone (TSH) - A hypopituitarism as a baby. This could be is given to young people who have brain thyroxine and sex hormones) can be hormone released by the pituitary gland, a generic cause or an unidentified cause. tumours away from the pituitary gland but readily replaced. Each one is discussed telling the thyroid gland to release thyroxine. One of these condition can be septo-optic the radiation can affect the pituitary and below. This is one of the released dysplasia. cause hypopituitarism. by the thyroid gland. It is important for heart Severe head injury: This is a rare cause of Cortisol: Cortisol is a hormone released and muscle function and the development Acquired causes the pituitary not working, resulting in a lack by the adrenal glands. It is important for and maintenance of bones. If deficient, : This is a type of slow of production of one or more hormones. a variety of functions, but is particularly metabolism is affected - your body will run growing, benign brain tumour with 50% important for helping the body respond ‘slowly’, feel cold, gain weight and you may feel to stress. is the medication depressed. is the medication used to replace cortisol. used to replace thyroid hormone. Our booklets Hydrocortisone Advice for Patients, and Hydrocortisone Advice for The following hormones will be tested, Parents can be downloaded or ordered free once the dust has settled, following of charge from our website. These booklets surgery/radiotherapy: explain sick day rules, when and how much to increase your tablets, when an emergency (GH) - A hormone injection is needed and when to seek released by the pituitary gland which medical help. controls the rate of growth. Even after you’ve finished growing, growth hormone has Insipidus - A condition many important effects during adult life, characterised by great thirst and the constant such as affecting your muscles, bones and need to pass . It is caused by a reduction energy levels. Your GH levels will be checked in, or lack of response to antidiuretic through transition and longer term where hormone. It is an entirely different disease to appropriate. The deficiency in GH is treated Type I or II Diabetes Mellitus, which has to do with GH injections under your skin (in your with and blood sugar levels. Having thigh or tummy), given through a very thin DI is probably the most difficult part about needle at night. See diagram on page 8.

6 Living with hypopituitarism for young adults and teens Living with hypopituitarism for young adults and teens 7 Treating hypopituitarism Treating your tumour

The Pituitary Foundation Information Booklets

Skin Surgery or radiotherapy

Tumours are one of the causes of For teens and young adults hypopituitarism in young people. Most pituitary tumours (they can also be called lumps or a growth) are benign - which means they are not cancerous Subcutaneous fat Muscle - but could still require treatment. It is most likely that the tumour you had has Follicle Stimulating Hormone (FSH) - A Oestrogen - A female hormone which is been operated on, and you may also hormone released by the pituitary that produced and released by the ovaries. It is have had radiation treatment. Hopefully, contributes to sexual development. It works important for female sexual development – that means these treatments will control alongside LH in both men and women. making a girl’s body into a womanly shape, and any further problems with your tumour.

In women, it controls ovulation and so is causing breasts to grow. It is also important Working to support pituitary patients, their carers & families important for a normal in the development of an egg during the Just been told I will need an Teens DI booklet.indd 1 13/04/15 10:20 AM and for fertility. In men, it tells the testes to menstrual cycle. Oestrogen treatment can be operation on my pituitary - I’m produce sperm. as pills or patches put on the skin. afraid! eyesight, the aim of surgery is to improve your Your endocrinologist will work in a team sight or at least not make it any worse. (LH) - A hormone - A steroid hormone from which includes a neurosurgeon (usually released by the pituitary gland that the androgen group of hormones. In men based in the same hospital or nearby). The Why do they keep checking my contributes to sexual development. It works it is produced by the testes (). It is neurosurgeon will see you and your parents sodium? alongside FSH in both men and women. important for the development of male to discuss the type of surgery he/she will Sometimes, pituitary surgery affects your In females it controls ovulation and so is sexual characteristics (like growing pubic hair perform, how long it is expected you’ll be in ability to retain urine - this condition important for a normal menstrual cycle and developing a deep voice), and plays a hospital and recovery time afterwards. You is called (please see and for fertility. In men it stimulates the key role in reproduction. It is also important and your parents will be able to discuss any our booklet - above - called Living with testes to produce sperm. In women, the for the maintenance of bone density and questions or fears you have at this time. Diabetes Insipidus for young adults and combined action of FSH and LH on the strength and for muscle growth and strength. teens). If this occurs, it usually settles down ovaries leads to production of oestrogen. Testosterone treatment can be given as Will brain surgery affect me in after a few days. However, it may last longer In men, LH stimulates the testes to produce injections, gels or tablets. other ways? and you would need hormone replacement testosterone. If you are given replacement hormones, No, the pituitary is safely enclosed and tumours medication called desmopressin. Blood your endocrinologist will regularly check or surgery don’t impact on the rest of the tests are a fairly quick way of checking your your hormone levels by blood tests. brain. If you have had any problems with your sodium balance.

8 Living with hypopituitarism for young adults and teens Living with hypopituitarism for young adults and teens 9 Treating your tumour Managing hypopituitarism day-to-day

Surgery may cause secondary adrenal Transition from paediatrics to Travelling insufficiency (AI) which should be explained adult to you, although you may not feel up to ‘Transition’ is the process of getting ready to I’m worried about going away from taking this information in if you are suffering be looked after by adult doctors and nurses home with my medication from AI. The symptoms of AI to be aware of where you’ve previously been looked after You should be able to go on holidays after your surgery can include feeling sick, by children’s doctors and nurses. and travel, as you did before. Taking your dizzy and very tired. Your bloods will be Transition is a time when you, rather hormone medication with you might feel a being tested whilst in hospital and would than your parents, begin to take control of burden at first, but this is easily carried with pick this up, but if you have these symptoms managing your hypopituitarism and care you in your hand luggage, or can be safely once back home and you aren’t taking – some things will happen naturally, whilst stored in the car. Some forms of GH will need hydrocortisone, you or your parents should others you may have to work through a plan to be kept in cool temperatures. Purchase or contact the ward quickly. with your parents or doctors and nurses. borrow a small cool bag with several freezer Our Post-surgery fact sheet is also Adult clinics can have some small blocks. Most GH companies will also supply available to answer questions you may have differences but on the whole are very similar, you with a cool bag free of charge. following your operation. and there may be things that you prefer Before you travel, call your accommodation about the adult clinic! Some young people (hotel, bed and breakfast) and ask if they I’ve been told I need radiotherapy (and parents) see going to the adult clinic have refrigerators in the rooms or, if not, if – why? as a new start. Adult doctors and nurses are one can be hired for your room. If they do This may be given instead of, or following just as happy to take time and explain things not have refrigerators, ask if they have a letter about your medication and your doses surgery, or later on if it is necessary. This is and be contacted in between clinic visits. freezer where they can place your freezer prescribed. This letter will be helpful should a fairly common procedure carried out at a You can also still take your parents to adult blocks on a rota in order that you can keep you become unwell and have to see a doctor. specialist centre (which would be nearest to clinic visits if you want until you get used to your cool bag cool. It is also useful for you to have this letter your home) and can be used to complement the new clinic. During travel, place your medication into a whilst going through airport security, in the surgery. Having radiotherapy does not mean Transfer to adult services should happen cool bag with both frozen blocks - the blocks event that they question your medication. that your pituitary tumour is cancerous. when you are well, and at a time which fits in should keep cool for around 12 hours. If you If you have a repeat copy prescription this Radiotherapy may make you feel a bit sick or with you. You may want to plan a time which need to use the hotel’s freezer, on arrival, can also be shown. It is suggested that you tired. Proton beam therapy, which has only is not too close to doing exams, leaving give them one block labelled with your have a hydrocortisone100mg injection kit been an option abroad for treating patients, school or college, going to university and name. Twelve hours later, swap the blocks to whilst you are travelling abroad, in case of will be available in Manchester in 2018. starting your first job. So make sure you tell ensure you continually have a frozen block emergency. If you are to travel to an area Our Surgery & Radiotherapy booklet your doctors and nurses if you are ready or to use both day and night in the cool bag. where the emergency injection kit may be is available from our website and can be not. Transfer will usually happen between 16 If you are going on holiday abroad, you subject to temperatures exceeding 25°C, ordered or is free to download. and 19 years of age. should ask your GP or endocrinologist for a then it should be placed in a small cool bag.

10 Living with hypopituitarism for young adults and teens Living with hypopituitarism for young adults and teens 11 All of your medication should be labelled you can request by emailing helpline@ attend part-time instead. It is important to with your name and kept with you at all pituitary.org.uk or calling our Helpline on get a note from your doctor if you are not times during your journey, as part of your 0117 370 1320. Your endocrinologist or GP feeling well, especially if it means that you hand luggage. can complete this letter for you. can’t hand work in on time. Your tutor may At check-in they will ask if you are carrying be able to email or record lectures for you or anything sharp i.e., needles and you should Working shifts give you extra time to complete coursework. mention if you are carrying injection The Pituitary Foundation’s School Care needles for your medical condition. If you I work night shifts – will this affect Guide is helpful for teaching staff at your have any doubts whatsoever regarding my medication? school or college to understand your airline or airport policies and procedures, This will cause a change in the times you specific needs if you are ill (also emergency please telephone the airport or airline well need to take your medication. You can for contacts and hydrocortisone emergency in advance of your departure. It is wise to discuss how to do this with your endocrine advice) and what they need to be aware of take at least an extra two weeks supply of specialist nurse or call The Foundation’s and do for you. hydrocortisone tablets with you in case Endocrine Nurse Helpline who can assist For school, college and starting work, you need to increase your usual dose whilst with this. Tel: 0117 370 1317 (scheduled School, college and work we do recommend that you have a buddy away. hours -see our website for times) Living with a pituitary condition can who can support you if you are unwell and Travel insurance of course is recommend- sometimes be challenging with regard to could be trained to give you an emergency ed and our website has details of companies going to school, homework, exams and injection in crisis situations. that other patients and their families have starting work. used successfully. Your parents may be able to go to Sport and physical activities your school to talk to your teachers and Regular exercise can help reduce negative Camping – how do I keep my classmates about your condition. There may feelings such as depression, tension, medication cool? be a nurse who could go into school to confusion and . Benefits can include You could use your cool bag as above, but explain about your treatment and also what increased self-confidence and improved most sites now have electric hook-ups for teachers might need to do in case of illness self-esteem. Starting exercise can produce tents and camper vans or caravans usually or an emergency. You could find out about a a real mental boost, doing something you have fridges. There is a GH injection that support worker to help you in school or for didn’t necessarily think you’d be able to. That doesn’t need to be stored in a fridge, called occasions such as exams. gives you a self-confidence that transfers Genotropin Miniquick, by Pfizer. You could Going to college or university can be a into other aspects of life, and can feed into ask your endocrinologist if this could be big change in your life, but can be a positive your self-esteem and self-perceptions, which prescribed temporarily for your holiday. experience. If full time study isn’t appropriate is very important for your mental health. The Foundation has a template travel letter for you, there may be the opportunity to The physical benefits of regular exercise

12 Living with hypopituitarism for young adults and teens Living with hypopituitarism for young adults and teens 13 Social life

of course can help weight managing, sleep Meeting other people with patterns and help to maintain strong bones, hypopituitarism particularly in adolescents. It can also lower Young people mostly like to spend time stress levels, and can maintain good heart with people their own age for obvious health. reasons, more interesting, more fun etc. Fatigue can be a real barrier. You might Finding somebody your own age with a feel worn out, but you might just be similar condition can be a very positive experiencing mental fatigue. If you do go thing although not for everybody. The out and even gently exercise, you’ll find good things that it might bring are sharing you’re invigorated and it will give you more stories, asking and giving advice and even energy. Exercise can help relieve tiredness. just relaxing and having a good time. It also For people who haven’t exercised for lets you know that you are not the only one! some time – or if at all – they don’t think of The Pituitary Foundation have an online themselves as someone who exercises or a Younger People’s support group, for peer sporty person. But there are so many ways support – see www.pituitary.org.uk/ I take hydrocortisone and I’m take your hydrocortisone as normal. If you of being active; it’s just a case of finding support-for-you/peer-support/younger- worried about drinking alcohol; all oversleep and have a hangover, then taking something you enjoy. As well as walking, it people-parents-support-group-uk/ my friends drink and I feel like the your hydrocortisone later than normal will could be swimming, tennis or badminton; it You could also ask the doctors or nurses odd one out only make things worse. might be cycling, aqua aerobics or spinning. at your clinic if they run a group for young You do need to stay safe when you are Often, people don’t want to exercise because people, or if they could introduce you to out socialising. Always ensure the people I have DI, should I take my they think that its hard work or they start out somebody who has a similar condition to you are out with know that you are steroid desmopressin before I go out for and feel it’s too hard and so they give up. It you. dependent and explain to them what it the evening instead of bedtime? is much better to start slowly and build up actually means if you become unwell. It is If you are drinking, you should wait until you gradually. advisable to stay within the recommended get home to take your dose of desmopressin. safe drinking limits which are 14 units per Alcohol is a diuretic, which means it acts week for males and females. For example, on the kidneys to make you pee out much ½ pint of 4% standard beer or 250ml of a more than you take in – which is why you 275 bottle of 4% Alcopop is one unit. Do need to go to the toilet so often when you call and chat with our Endocrine Nurse for drink. Alcohol reduces the production of practicalities around this. your hormone, which tells your If you do overindulge, please ensure you kidneys to reabsorb water rather than flush it have your alarm set for the morning to out through the bladder. This is of course the

14 Living with hypopituitarism for young adults and teens Living with hypopituitarism for young adults and teens 15 Sex and relationships

hormone (desmopressin) you’ll and have had enough is quite Will having this condition stop me take for your DI. It might seem fine; you should go home having sex or finding a partner? silly not to take your dose even if it’s earlier and rest. Some young adults might have to overcome before going out drinking, particular barriers because of their condition but it would cause you How can I help myself as it could be harder to get to meet potential more problems if you did. feel safe? partners and difficult to know when (or if) to With fluid leaving your Young adults want to be the tell them about their condition. Confidence body so quickly, same as everyone else and do might be affected by your condition and you can be a big problem. Though it not often wish anyone to know may prefer meeting those you already know, might seem like even more liquid is they have a medical condition but rather than having to meet new people. You the last thing you need, when you’re regularly if you have steroid dependency/adrenal may also face practical issues about getting having to dash to the gents/ladies, regular sips insufficiency and/or diabetes insipidus, tired, lacking confidence and having to be of water during and after drinking are what it is imperative you share this important near toilets, for example if you have DI. you need to keep yourself hydrated and safe. information with your friends. Wearing Having a pituitary condition does not in Please do discuss this with your endocrine your medical talisman and carrying your itself stop a young person from wanting, or department to advise you more on how to emergency hydrocortisone and/or diabetes having sex. Hormones and the effects of your medication to get through puberty and are deal with this situation. insipidus card will help others or medical condition and hormone replacement (such as still on them you may need to talk through personnel understand your condition and tiredness, body image concerns and lack of options available. There are always options! I’ve had a long day and going out needs. ) may be another matter though; it’s very Anovulatory failure (a menstrual cycle until late at night; I will be exhausted Attending college/university/ or starting reasonable to discuss any concerns you may during which the ovaries do not release but don’t want to have to stay in! a new job for the first time and educating have with your endocrinologist or nurse. an egg) or ovulation disorders can be the This can be a time when you struggle the people who are involved with you on If you are in a relationship and have main causes of in the female. with energy levels, for example going a day-to day-basis really does reassure you concerns, it may be a good idea to discuss This is usually caused by an imbalance of to music festivals and parties. In these that in the event of an emergency/illness, this with your partner, who, if they truly care hormones - including conditions of the situations, providing you are not doing it help should be available without delay. about you, will do their best to understand pituitary gland, thyroid gland and raised on a regular basis, then an additional dose Discussing your condition with friends and support you. prolactin levels. of hydrocortisone 5mg can be beneficial at and colleagues is imperative from a safety Treatment for these conditions is relatively around 9-10pm. This will help maintain your point of view when socialising and at your I’m not sure if I’m fertile because of simple and effective at restoring normal energy levels and ensure you are safe until place of education or work. Its a good idea my condition? ovulation. Before any treatment can be the morning. You should be able to enjoy a to have a ‘HC buddy’ - a good friend who can Thinking about having children of your own offered, it’s very important to perform certain social life like any of your friends and family, be shown how to give you an emergency can be important at this time of life although tests in order to establish the actual cause. but knowing that when you are very tired HC injection if needed. not for everybody. If you needed oestrogen These tests include an ultrasound scan of

16 Living with hypopituitarism for young adults and teens Living with hypopituitarism for young adults and teens 17 Please support The Pituitary Foundation

Join the The Pituitary Foundation today and enjoy the benefits of membership!

✔ Receive our members’ magazine, Pituitary Life, three times a year full of the latest information, updates and patient stories, to help you better understand, or manage your pituitary condition. ✔ Become an important part of the only charity in the UK providing support to pituitary patients. ✔ Receive a welcome pack and a membership card and enjoy discounts to Pituitary Foundation the ovaries and womb, and blood tests to events, such as our conferences. measure a range of hormones including ✔ Give us a stronger voice to raise awareness, and understanding, of pituitary disorders. thyroid, prolactin, follicle-stimulating hormone (FSH), luteinizing hormone (LH), Individual membership costs £20.00 for a full year, which is only £1.66 a month! testosterone and other androgens (male (Family, concessionary and life membership rates are also available). hormones). To become a member, please complete the form below and return to us with your payment If you went through puberty on your own (cheques made payable to The Pituitary Foundation) to: and are not on oestrogen medication you The Pituitary Foundation, may need to take care not to get pregnant 86 Colston Street, Bristol, BS1 5BB if you don’t want to. The advice is always to practice safe sex. This is not only for If you would like to pay for your membership by standing order, prevention of (if appropriate) please contact 0117 370 1333, or to join online visit www.pituitary.org.uk but also for your safe sexual health and the prevention of sexually transmitted diseases. I wish to become a Member of The PiTuiTary FoundaTion If you are taking a contraception pill, Title: First Name: Surname: it is important that if you have trouble remembering to take this, please do discuss Address: this with your endocrinologist/Endocrine Postcode: Specialist Nurse. Also to note that whilst Telephone No: Email: taking the combined pill, this can affect serum Please tick (✔) the type of Membership you require: cortisol levels, so it can affect test results if you are also taking hydrocortisone/ have Individual £20.00 (annual) Family £35.00 (annual) AI. Contraceptive information and help is Life Membership £250.00 Concessionary* £10.00 (annual) available at: Additional donation (optional) £

www.brook.org.uk/ *(Concessionary rate for people on a state pension, in receipt of state benefits, on low income, students, and under 18s only). www.nhs.uk/Conditions/contraception- Gift aid: I am a UK Taxpayer. Please treat all membership payments and donations I have made for 6 years prior guide/Pages/contraception.aspx to this declaration and all that I make from this date, until I notify you otherwise, as qualifying for Gift Aid (please tick) You must pay an amount of Income Tax and/or Capital Gains Tax for each tax year (6th April one year to 5th April the next) that is at least equal to the amount of tax that the charity will reclaim on your gifts for that tax year.

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18 Living with hypopituitarism for young adults and teens Living with hypopituitarism for young adults and teens 19 Helpline Monday - Friday 10:00am-4:00pm 0117 370 1320 Endocrine Nurse Helpline 0117 370 1317 (scheduled hours) Administration line 0117 370 1316

Reference material used in this booklet © 2016; The Pituitary Foundation version 1. To be with permission from University of reviewed July 2018. This material may not be Manchester (www.explain.me.uk) stored nor reproduced in any form nor by any means without the permission of The Pituitary The Pituitary Foundation Foundation. 86 Colston Street, Bristol, BS1 5BB Disclaimer: All information is general. If you or your www.pituitary.org.uk carer, have any concern about your treatment or any side effects please read the Patient Information booklet enclosed with your medication or consult your GP or Company Limited by Guarantee endocrinologist. Registered in England and Wales No. 3253584 Supported by a charitable donation from Pfizer Limited Registered Office: 86 Colston Street Bristol BS1 5BB Registered Charity No. 1058968

Working to support pituitary patients, their carers & families