Issue 31

Autumn 2015 edition 

Issue No: 31 

£5.00 inc P&P 

for non-members 

National Pituitary Conference 

April 2016 

Dealing with the guilt of passing 

on a long term condition 

Winter vaccinations 

Foundation update 

Art as therapy 

Christmas merchandise 

Pituitary life | autumn 2012 

www.pituitary.org.uk

2 

news News 

Help us raise awareness 

this October 

contents 

The focus for Awareness Month 

2015 is our Get Red Flagged 

campaign. 

Do you have adrenal insufficiency, or 

are you a pituitary patient who takes 

hydrocortisone? 

If the answer is yes make sure you 

contact your local ambulance trust to Get 

Red Flagged on their system. 

This means if you ever call 999, you 

will be flagged for priority attendance 

by a vehicle carrying emergency 

hydrocortisone. 

Adrenal crisis is life threatening and 

getting red flagged is an important safety 

precaution. 

What you can do: 

• Get yourself Red Flagged - Email us 

for a factsheet that explains how to do 

this. 

• Take information to your local clinic 

- This will encourage other patients with 

Adrenal Insufficiency to register with 

their Ambulance Trust. Email us to ask 

for a pack to take to your clinic. 

NB: Red flagging is available across most of the 

UK, although London and Yorkshire have some 

stipulations which are explained in the fact sheet. 

Red flagging is not yet available in the Republic 

of Ireland. 

We want the pituitary community to be 

bombarded by red flags and pictures of 

supporters wearing red during October, 

we want to make sure everyone takes 

notice of this important message. This is 

why we are also encouraging supporters 

to hold Go Red days to raise awareness 

and funds. You will see the staff ’s very 

own Go Red day in Bristol in the photo 

below. Ask your company to allow a Go 

Red Day at work, or how about organising 

a Go Red Day coffee morning? An easy 

way to raise money is to charge a small fee 

to those wearing red, and you could even 

bake iced red cakes to sell. Get in touch 

News 2-8 

Local Support Group news 6 

Professional articles 9-13 

Patients’ stories 14-18 

Raising awareness 19-21 

Wall of thanks 22-23 

and we’ll send out your red flags and a 

resource pack to help you celebrate going 

red in style. 

Other ways supporters are getting 

involved this awareness month is by 

holding an awareness stand in their local 

community, giving a talk about pituitary 

conditions, or donating to help fund our 

awareness work. See our website for full 

details. 

Let us know which activity you are 

getting involved in and we will send you 

the resources you will need. To do this just 

contact our Assistant Administrator, Emily 

Graham, at emily@pituitary.org.uk or 

ring 0117 370 1310 ■ 

Pituitary Life | autumn 2015

news News 

3 

National Pituitary Conference 2016 

Don’t miss our biggest event of 

the year for pituitary patients 

and their families! 

We are delighted to announce our next 

National Pituitary Conference which will be 

held in central Leeds on Saturday 23 April 

2016. Inside this copy you will find the flyer 

and booking form containing full details. 

This Conference will offer new 

workshop topics that were suggested by 

delegates at our last Conference. There 

will also be specialist medical speakers 

from across the UK, and speakers from 

the local Leeds endocrine team. Everyone 

will attend the morning session, of a 

pituitary conditions introductory session 

by Prof John Newell-Price, followed by 

psychologist Dr Sue Jackson, giving a talk 

about the psychological impact of pituitary 

conditions. During the afternoon there 

will be two sets of workshops covering 

many condition-specific and new topics. 

These will include weight, diet and fatigue, 

plus Cushing’s, acromegaly, prolactinoma 

and DI, all run by expert clinicians. 

There will be sessions for younger 

patients and parents and our popular 

adrenal insufficiency and hydrocortisone 

injection workshop. (Where possible we 

have ensured workshops will run twice 

so delegates shouldn’t miss out). This 

year we are also offering an optional 

social evening from 7.30pm after the 

conference! It will be a great chance to get 

to know other patients and families. We 

will have private dining for a two course 

set meal, with a bar and table service. 

Confirmed medical speakers so far 

include Prof John Newell-Price, Dr Steve 

Ball, Dr Rob Murray, Dr Steve Orme, Dr 

Sue Jackson, and Specialist Endocrine 

Nurses Alison Milne and Julie Andrew. 

More will be announced shortly! 

affordable rates 

Leeds was chosen as the location, due to 

the excellent conference rates compared 

with other northern cities we researched. 

We have therefore been able to keep the 

rates affordable, even though we needed 

a venue where we could hold increased 

numbers of workshops. The Foundation 

varies the conference location to try and 

please all our members and cover new 

areas. We are therefore pleased to say 

we have not had to increase our prices 

I got to meet other people with the 

same conditions as myself. I came 

away buzzing with knowledge and 

the feeling I was not alone – it is 

an enjoyable, informative and an 

enlightening experience and I am 

really looking forward to the next 

one. (Quote from previous 

conference delegate) 

Our Conferences are very popular so 

to avoid disappointment please book 

early. 

from our last Conference. Rates for our 

members are subsidised to the greatest 

extent with the early bird rate being just 

£30, available until 31 December. Our 

members’ rate is £34, after this date. 

There is also a special offer for 13s - 25s 

of only £20! 

The Conference is being held at 

The Hilton Leeds City Hotel, (4* star, 

newly refurbished with a Fitness Centre, 

indoor swimming pool, sauna and steam 

room) which is only two minutes’ walk 

from Leeds central station. The hotel 

is close to central attractions in Leeds, 

such as museums and the large Trinity 

Leeds shopping Mall. We recommend 

booking your travel early as advanced 

fares offer value for money, weekends 

also mean cheaper train travel. First 

come, first served onsite parking is also 

available at the hotel. A comprehensive 

travel information leaflet will be sent to 

all delegates. The Foundation has been 

given a set rate for our delegates for B&B, 

which is £89 single, £99 double. For the 

optional meal and social evening, tickets 

are £20 per person, or £30 for two, if 

you are sharing a room at the hotel. If 


4 News 

you have dietary requirements you must 

speak to the hotel directly to opt out of 

the set menu. If required, there are also 

budget hotel options nearby, including a 

Travelodge. We are able to offer three, 

free bursary places for people who 

are unemployed and most in need of 

information and support regarding their 

pituitary condition. Please note, these free 

places are for patients who have not been 

able to attend a previous Conference. 

Please contact us for a bursary application 

form on 0117 370 1310. The deadline for 

this is 1 March. 

At the last conference 100% of our 

delegates said the day had improved or 

partly improved their understanding 

of pituitary conditions, and 99% 

of delegates said they would attend 

another conference! 

Please book your place by 

completing the enclosed booking 

form and returning it to us by the 

deadline of 15 April 2016. You can 

also book through our website shop, or 

to book over the phone or for further 

information, please call 0117 370 1310 

or email enquiries@pituitary.org.uk 

However, you have to contact the hotel 

during working hours by 25 March to 

book the social evening & B&B. When 

booking, you must quote the correct 

booking code (see enclosed booking 

form for details). Only telephone The 

Foundation if you are booking just for 

the social evening ticket with no B&B. We 

appreciate there is a lot of detail on the 

booking form, but please do read all the 

information carefully before booking ■ 

The Pituitary Foundation News 

In the last edition of Pituitary Life 

magazine we shared with you the 

progress we had made as a charity 

during 2013 -14. We talked about 

increasing demand for our support 

services, how we are helping an 

increasing number of patients, and we 

shared with you that it was a recordbreaking 

year for fundraising. 

With this backdrop in mind, 2015 has 

been a busy year of planning for The 

Pituitary Foundation, as we have been 

undertaking a comprehensive review of 

the charity, looking at where we are going 

in the future and how to get there. The 

past few years have been very positive 

for the charity in many ways, in terms 

of our financial position, running of the 

organisation, reaching and supporting 

more patients and families. We have seen 

growth in many areas of the charity and 

now we are considering how we can 

effectively support and sustain the growth 

in the future, so we can ultimately make 

more of a difference to pituitary patients. 

There is much more work to do to: 

improve awareness; improve quality of 

life of patients and their families; reduce 

isolation; reduce diagnosis times and 

reduce preventable incidents of death 

amongst pituitary patients. 

Over the past four years, with thanks 

to you, our generous members, and our 

supporters, we have generated surplus 

Menai Owen-Jones 

funds each year. This means we are now in 

a strong financial position to invest for the 

future. The Board of Trustees approved 

an Organisation Review Proposal in July 

2015, which means from September 2015 

we will start expanding our charity across 

key areas, using some of our financial 

reserves to support the expansion. The 

changes that will take place aim to provide 

a strong and sustainable organisation 

for the long-term, which will meet both 

current and future growth demands. This 

means that there will be changes to the 

roles of some of our current staff and 

we will also be recruiting new staff to join 

our team over the next twelve months. 

By summer 2016 we will have a new 

organisational structure in place. The 

benefits of these changes and the new 

structure are that we will be able to 

increase the number of people we help; 

we’ll be able to expand current patient 

Jenny West 

and family services; we will be able to 

introduce new services; we’ll be able to 

increase our support of young people 

and their parents; we’ll be able to improve 

health care professionals’ engagement 

and education; and we will be able to 

increase awareness of pituitary conditions 

and patients’ needs through more 

campaigning work. 

We are ambitious for the future of the 

charity and ambitious in our aims to do 

more to help pituitary patients and their 

families. We thank you for your continued 

membership, it’s thanks to everyone’s 

contribution that we are now in such a 

positive place looking forward to the future. 

We hope that you will continue supporting 

us towards doing more to improve the lives 

of pituitary patients and their families. 

Menai Owen-Jones, Chief Executive 

Officer, & Jenny West, 

Chairman of Trustees ■ 


News 

5 

Campaigns and policy work update 

The Foundation campaigns 

on key issues facing pituitary 

patients to improve care and 

services and we now have a Campaigns & Policy 

Strategy in place for the first time. We run three regular 

campaigns each year, one of these is in conjunction with 

Awareness Month. We are also delighted to have a team of 

Volunteer Campaigners who are helping us raise awareness 

in their local communities, giving us a greater reach. The 

Foundation is gradually becoming involved with greater 

amounts of policy work too. This includes such activities 

as responding to government consultations, surveys, policy 

briefings and position statements. Equally, policy work can 

involve social research, participation in reference groups, 

and supporting other organisations’ activities. 

This update will be a new, regular article in the magazine to 

keep our members informed about our recent activities. The 

main highlights to report on for this issue include: 

l Adrenal crisis proposal: The Foundation is currently a 

partner organisation in a project proposal to NCEPOD 

(National Confidential Enquiry into Patient Outcome and 

Death) led by Dr Petros Perros a Newcastle Endocrinologist. 

The proposal focuses on preventing cases of fatal adrenal 

crises and has recently been resubmitted for the second time. 

l The Foundation is currently involved with the Scottish 

Medicine Consortium’s assessment of pasireotide 

(Signifor®) a new medicine for acromegaly. We have been 

involved through completing a patient group submission 

report and we took part in the PACE meeting in Glasgow, 

putting forward the patient perspective, case studies, and 

information about Acromegaly. The decision regarding 

whether Pasireotide will be made available on the NHS in 

Scotland will be announced during the autumn. 

l Our General Election (Rare Disease Strategy) Campaign 

and Save Our Loos Campaign have both seen supporters 

writing to politicians and local councillors. 

l Social research: The Foundation is currently supporting 

a PhD research project which is looking at issues faced by 

younger pituitary patients. 

l Independent Patient Funding Request (IPFR) work: We 

attended a lecture in London about this application process 

which was given by the previous Area Head of Specialist 

Commissioning in North West London, Alistair Whitington. 

The event allowed us to put together help notes for pituitary 

patients who are facing the IPFR application process; these 

are now available on our website. 

l The Foundation often helps to publicise research studies that are 

being undertaken by external parties, recent examples include a 

Bangor University research project looking into NHS funding 

of expensive drugs for rare diseases, and some market research 

looking into injection devices for Acromegaly patients. 

For any queries relating to campaigns and policy work please 

call 0117 370 1316 or email campaigns@pituitary.org.uk and 

Rosa, our Campaigns, Volunteers & Events Manager, will be 

happy to help. To find out more, or to see how you can get 

involved you can also visit the campaigns section of our website ■ 

Changes to our telephone numbers 

From 1 July 2015 our new contact numbers are: 

• Patient Support & Information Helpline – 0117 370 1320 (was 0845 450 0375) 

• Endocrine Nurse Helpline – 0117 370 1317 (was 0845 450 0377) 

• Administration main switchboard number – 0117 370 1333 (was 0845 450 0376) 

Calls to all of the 0117 numbers will be charged at geographic rates. This means your call 

charge will be set by your telephone company, with no extra service charge. 

For further information, please see: www.pituitary.org.uk/news/information-briefingchanges-to-our-0845-telephone-numbers/ 

Our email addresses (which have not changed): 

• Patient Support and Information helpline@pituitary.org.uk 

• General enquiries enquiries@pituitary.org.uk This email is for general non-patient 

support related enquiries. 

• Membership enquiries membership@pituitary.org.uk 

• Fundraising enquiries fundraising@pituitary.org.uk ■ 


6 Local Support Group News 

This section contains some 

brief updates from a few of our 

Support Groups around the 

UK. For information about our 

groups’ meetings and to see 

if one of our Support Groups 

meet near you, please see our 

website, contact Rosa Watkin 

on 0117 370 1316, or email 

helpline@pituitary.org.uk 

Birmingham 

Sadly, during September we have to 

say goodbye to Birmingham Area Coordinators, 

Pat and Tony Prince. The 

Foundation would like to say a huge 

thank you for all the time and hard work 

they have put into running the group; 

they have done a really wonderful job. 

Luckily, two new volunteers, Nigel 

and David, have kindly come forward 

to keep the group running which is 

great news. The official handover will 

be at the group’s next meeting on the 

26 September. New members are 

always welcome to come along, and 

we imagine many current members will 

want to attend the September meeting 

to thank Pat and Tony. Group contact 

details are on our website or just ring 

the Helpline. 

York – new Group launch 

We are delighted to announce a brand 

new Support Group that is launching 

in York. The Area Co-ordinator is a 

pituitary patient called Dominika, who 

works at the nearby university. She 

is looking to organise the first group 

meeting for 3 October and details will 

be confirmed on the website. If you 

live within travelling distance of York 

please do support this new group by 

going along. Meetings will be a chance to 

support each other and learn more about 

pituitary conditions. You can be added 

to the group email loop by contacting 

Dominika on 07825 769082 or emailing 

dominika.butler@yahoo.co.uk 

Bristol 

A big thank you to The Bristol Group 

who donated £200 to The Foundation 

in the summer. These funds are truly 

appreciated. The group have a short 

break from meetings during the summer 

but will be meeting again in October 

and November. For details of all of 

our Support Groups, please visit the 

website or ring our Helpline ■ 

In Memory 

Aidan Pennington 1966 – 2015 

Aidan died peacefully on 8 August 

with his family at his bedside. 

He first joined The Pituitary Foundation 

in 1996 and later became a Trustee. As a 

pituitary patient himself he was easily 

able to empathise with other patients 

and this was displayed at the numerous 

conferences and meetings where members 

and patients had the opportunity to meet 

him. When The Foundation found itself 

in need of a Company Secretary, Aidan 

was happy to step forward and offer his 

legal knowledge and training to the benefit 

of The Foundation, a post that he held 

until his recent illness. His background, 

working with IBM for many years as a 

Test Architect and software engineer, 

brought analytical and procedural skills 

to The Foundation which at a time of 

restructure was a valuable asset to add to 

the portfolio of The Board. 

Aidan was always an advocate of optical 

health and would regularly lobby the 

board on the benefits of including visual 

health professionals in issues of pituitary 

healthcare. He was an active Board 

member who rarely missed a meeting 

and his contribution and character will be 

greatly missed at the Trustees Meetings. 

He was a regular participant in fundraising 

events and despite admitting to being 

scared of heights he bravely took part in 

the zip-slide at Chepstow last year raising 

valuable funds for The Foundation. 

We will always be very grateful for his 

long-standing support and contribution. 

The Foundation and all who knew Aidan 

are very much the richer for having 

known him. 

Eileen Bowbrick, 

Solent Support Group 

The Group are so very sorry to lose 

their friend, Eileen Bowbrick, who 

Pituitary life | autumn 2015

News 

7 

passed away on 19 July. Eileen had been 

attending our meetings for many years 

and then joined our Committee taking 

on the role of Treasurer for seven years. 

She stepped down as Treasurer but 

remained on the Committee and we will 

always remember Eileen with her smiling 

face, laughing and being very cheeky - 

with a naughty sense of humour. She 

missed very few of our get-togethers and 

was always sitting at the door meeting 

and greeting and making sure everyone 

bought a raffle ticket. Eileen and her 

granddaughters also came to our yearly 

Isle of Wight meetings and lots of her 

family supported us by raising funds at 

our quiz evenings. 

Eileen and her husband Fred opened 

up their home for us to hold our 

Committee meetings, where we have 

always had a laugh and usually digressed 

from matters in hand, whilst enjoying 

coffee & cake! Fred has even insisted 

we still hold the Committee meetings at 

their house because that is what Eileen 

would’ve wanted. Bless you Fred. Eileen, 

we will miss you loads. 

David Brazendale and Mo, 

members of Liverpool Support 

Group (left & below left) 

David passed away in May; he was known 

for supplying members with his legendary 

home-grown rhubarb! David and his 

widow Marj, have been members of the 

group for many years, supporting others 

with their warmth and kindness. 

Eddie Shaw’s partner Mo passed away 

earlier this summer, she had only been ill 

for a few months. Mo was normally by 

Eddie’s side when he came to our meetings 

Our thoughts are with Eddie, Marj and 

their families 

Mrs Mary Furmedge 

We were saddened to hear of Mary’s 

passing. Mary’s husband, Stan, and 

daughter, Maria, told us that Mary had 

lived with her condition for 15 years and 

were grateful for the support and comfort 

that The Foundation gave to her. A very 

kind donation of £100 has been received 

from her family, which we do appreciate. 

Our condolences and sincere sympathy 

to all of these families ■ 

Christmas merchandise 

Enclosed you will find our new 

Christmas catalogue and you 

will notice that we have some 

fabulous new Christmas card designs. 

On top of this we have also introduced 

many new items including pill boxes, 

a branded memory stick, coasters, 

new Bags for Life and T-shirts ■ 


8 News 

Art for wellbeing 

Pat McBride, Distinction in Art & Design; 

Foundation Art Therapy BAAT 

Over recent years, there has been a growing 

understanding of the impact that taking part in 

the arts can have on health and wellbeing. By 

supplementing medicine and care, the arts can improve 

the health of people who experience emotional or physical 

health problems. Engaging in the arts can promote 

prevention of disease and build wellbeing. 

You do not need to have any art skill or previous experience of 

the arts in order to benefit from art for wellbeing, as the aim is 

not to produce a wonderful work of art but to use the art form 

to understand yourself better. Art can sooth, calm and relax you. 

How can this apply to pituitary patients? 

Art can be a voice or form of communication. It is a nonjudgemental 

therapy offering a safe outlet for your emotions or 

distress. It can help you to express things that you might find 

hard to put into words, perhaps about any of the following: 

• Diagnosis: shock, anger (why me?) family upset, life changes, 

loss of employment and friends 

• Tests: strange surroundings, medical terminology, anxiety 

about results 

• Treatment: Invasive, uncomfortable, physical changes that 

might have happened to you 

What materials should I use; 

how do I start? 

You can use anything that makes a mark: 

paints, pens and pencils, felt tips, pastels, 

crayons or charcoal. 

Doodling is a good place to start. This 

is a simple exercise for problem-solving 

in general. Doodling spontaneous marks 

actually helps you think while you are doing 

something else or it can be used as a place 

of escape, for example whilst waiting in the 

dentist. In art therapy sessions, people often 

find self-soothing in their doodling marks. 

Zentangle® is a self-help art therapy 

practice to enhance relaxation and focus. It 

has multiple benefits including calming an 

anxious mind, increasing self-confidence, 

and cultivating moment-to-moment 

awareness in a similar way as mindfulness 

or meditation. 

Unlike random doodling, it’s a specific 

way to draw images, and most often drawn 

in black pen on white paper. The traditional 

practice of Zentangling uses 3 ½ inch 

square tiles drawn on special paper, but 

you can use your own choice of paper, 

marked into squares. There are a number 

of magazines out now which are useful 

to start you off and cost about £5 - The 

Mindfulness Colouring Book; Art Therapy 

- An Anti-Stress Colouring Book 

Some other ideas you may 

want to try: 

Put together a journal or scrapbook: 

Journals don’t have to just contain 

words. You can make a journal that lets 

you visually express your emotions with 

doodles, or drawing. 

Design a postcard you will never send: 

Are you still angry or upset with someone 

in your life? Create a postcard that expresses 

this, though you don’t have to ever send it. 

Paint to music: Let your creativity flow 

in response to music; it is a great way to let 

out feelings and really relax. 

Draw a bag self-portrait. On the 

outside of a paper bag, or cardboard box, 

create a self-portrait. On the inside, you can 

fill it with things that represent who you are. 

Finally…. 

There is a ‘child artist’ in all of us. Do you 

remember the sheer joy of seeing lots of 

crayons, paint and paper at school and 

making your art innocently and bravely? 

As we grow up, we become self-conscious 

and critical, comparing our work to others. 

A pity, because art is in the eye of the 

beholder - some will love a piece of art, 

whilst others will hate it; it actually doesn’t 

matter, it is precious to you. Allow your 

inner child to be free and love making the 

art you want, for your wellbeing. 

If anyone would like help or more information, 

please contact Pat on 0117 370 1315 

or email pat@pituitary.org.uk 

Art Competition 

Would you like to donate a painting 

for The Pituitary Foundation’s 

summer 2016 garden party auction? 

We are looking for a winning painting 

to be auctioned in June 2016, with 

proceeds to The Foundation. Entries 

can be in watercolour, acrylic, oil or 

printmaking and not framed please. 

Your painting should be sent to us as 

a jpeg attachment, emailed to pat@ 

pituitary.org.uk by no later than 1 

April 2016. Please include your phone 

contact details in your email. 

The winning painting will be selected 

from three finalists, whose work 

will need to be sent to our National 

Support Office by post. 

Entry fee is £5 per painting with a 

maximum of two paintings per person. 

This competition is open to patients 

and their families only. Good luck! ■ 


news Professional articles 

9 

Dealing with the guilt of passing on a 

long term condition 

Dr Sue Jackson 

When I talk to patients with 

long term conditions (mental 

or physical), many of them 

tell me that they have significant 

concerns about what it means for 

their family, particularly in relation 

to passing the condition on to future 

generations. While there is increasing 

evidence of a genetic component to 

pituitary conditions, more research is 

needed for us to properly understand 

the causes and relative risks (i.e. the 

likelihood of other members of the 

family to develop the condition) for 

the various pituitary conditions. 

Appropriate support 

Many long term conditions (such as 

pituitary conditions) are “invisible”, i.e. 

you can’t tell just by looking that there’s 

something wrong with the person. People 

with such invisible conditions often 

report a lack of understanding from 

others, and this, perhaps unsurprisingly, 

is associated with a reported lack of 

appropriate support. The various pituitary 

conditions are associated with a variety of 

symptoms which can be difficult to live 

with, and which may vary over time. In a 

society where employers are significantly 

lacking in tolerance for those with chronic 

conditions (there are countless anecdotes 

of people with mental and physical 

problems being discriminated against by 

employers), the welfare budget is being 

steadily eroded, and the health service is 

struggling to cope, is it any wonder that 

individuals with long term conditions 

can be very worried and feel guilty about 

passing their condition to their offspring? 

For conditions where we know there 

is a genetic component, such as some 

cancers, genetic counselling is offered 

by the NHS. This is aimed at helping 

the family members to understand the 

condition, to identify who in the family 

has the condition, who might be at risk 

and to help families to make decisions 

about screening and genetic testing. 

Genetic counselling does not address the 

psychosocial aspects of the condition 

though, so there is no discussion of, for 

example, the anxiety, depression or guilt 

associated with the possibility of other 

family members having the condition. 

While lots of people diagnosed early in 

life decide to have a family, many decide 

not have any children. While many of this 

latter group are happy with their decision, 

many are not and they grieve for the 

family that they feel their condition has 

denied them. However, many long term 

conditions (pituitary conditions among 

them) are not diagnosed early, with the 

result that the adults may already have a 

family. In such cases, it is not uncommon 

for parents to express serious anxiety 

about the likelihood of their children 

developing their condition. For many 

parents, the guilt is associated with their 

perception that they are responsible 

for the suffering that their child will 

experience if they do go on to develop 

the condition. Debating the rights and 

wrongs of having children in such a case 

is beyond the scope of this article. 

New research 

So, what do we know about how parents 

deal with passing on a genetic condition? 

Research suggests that in 60% of affected 

families there is no discussion of the 

heritable condition either in relation to 

how the parent is experiencing it, or in 

relation to what it might mean for the 

children in future. Qualitative research 

has indicated that this “closed book” 

policy has serious consequences for the 

mental health of all concerned, and can 

lead to such tensions within the family 

that serious rifts develop between family 

members in some cases leading to family 

disintegration. Clearly, not talking about 

the issue seems to cause significant 

problems, but part of the problem is 

that families often do not know how to 

have the conversations. It is a far from 

straightforward issue comprising many 

aspects, such as; is there an ideal age for the 

younger family members to be introduced 

to the topic? Should you start with the 

parent’s condition (i.e. the facts and what 

is known), and, if so, in how much detail? 

How do you have the conversation such 

that the younger members are not made 

overly anxious? How do you deal with the 

questions that might be asked to which 

there might be no easy answers? 

Why and how? 

It seems to me that the guilt stems in 

part from how we tend to engage with 

the problem of the condition. It is 

common for people diagnosed with a 

condition to want to know what caused 

it and why it has happened to them. The 

historian, Christopher Clark, talks about 

the important distinction between asking 

“why” and “how” questions. He says 

that when we ask why something has 

happened, we are searching for the basic 

cause, often with the intent of fixing 

the problem, or, if that is not possible, 

to prevent it occurring again. But often 

inherent within such a search for causes 

is the apportioning of guilt; not only do 

we ask why something happened, but 

also who was to blame. Clark argues 

that it is better for us to ask “how” 

questions because they tend to lead us in 

the direction of interventions, ideas and 

possible solutions to enable us to work 

with a situation constructively, as well as 

helping us to avoid the blame game. So, 

part of the solution to dealing with the 

guilt can be reframing the why questions 

(why me?) to how questions (how does 

this condition develop? How can it best 


10 Professional articles 

be dealt with?). 

But what about the element of guilt 

known as responsibility (or blame) – as 

in, I’m the one in this family responsible 

for passing this condition on? Taking 

responsibility for the mistakes that we 

make is generally seen as a good thing. 

It’s part of the social oil that keeps our 

society working. It’s entirely appropriate 

to feel guilty about breaking someone’s 

window, and subsequently apologising and 

offering to organize and pay for the repair. 

But I’m not sure it’s all that relevant or 

helpful when you’re talking about health 

conditions, where all it actually seems to 

do is increase the anxiety and depression 

in the person with the condition. It’s only 

relatively recently that we have had any 

indication of the heritability of pituitary 

conditions, and our knowledge on the 

subject is far from complete. Ascribing 

responsibility or blame seems harsh and 

inappropriate, although I acknowledge 

that while this is easy to say it can be 

very difficult to shake off the feeling of 

responsibility. 

Overwhelming feelings 

The diagnosis of pituitary conditions can 

take a very long time, so the likelihood of 

an adult having a child (or more) before 

knowing they have such a condition is 

quite high. Surely you cannot be blamed 

and should not feel guilty for passing 

along a condition you had no idea you 

had. But that begs the question: if you 

chose to have a child after you were 

diagnosed, then surely you are guilty for 

the suffering that child experiences if they 

go on to develop your condition. This is 

another aspect of guilt; that I have caused 

hurt to someone else - and when that 

someone else is your child, the feelings 

can be particularly powerful, and in some 

cases, overwhelming. 

To this I would say, firstly, you cannot 

be sure that the child will go on to develop 

the condition. Secondly, if they do, you 

cannot be sure that the symptoms they 

experience and the treatment they receive 

will be the same as yours. Our knowledge 

changes all the time, and new treatments 

are found and developed. So a child’s life 

with a condition can be very different to 

their parent’s. Thirdly, even if they do 

have the same condition, symptoms and 

treatment, how they feel about it might 

be very different to how you felt about it. 

In psychology we say that “perception is 

everything”. So, what I identify as being 

the worst thing about my condition, 

someone else with the same condition 

would likely disagree with and identify 

something totally different. Finally, our 

society is fixated on curing (e.g. broken 

legs and tonsillitis), rather than healing, 

and there is a big difference between the 

two. For a child to inherit a condition that 

cannot be cured is seen as a terrible thing. 

The biomedical model used in Western 

medicine encourages us to believe that 

our body could (and should) be fixed. 

This can lead us to experience frustration 

at being expected to suffer with a 

condition, and the distress associated 

with this can be even greater when it is 

our children that are affected. For me, this 

highlights our lack of understanding of 

healing. If illness is described as a form of 

brokenness (language many of my clients 

use) and experienced as being shameful 

(as in, “there is something profoundly 

wrong with me”), then healing, at least 

as I understand it, refers to the process 

of acceptance and becoming a whole 

person again despite, or in the face of, 

the chronic condition. To be healed is to 

have good self-esteem, to see yourself as 

being worthwhile and making a valuable 

contribution to the world (regardless of 

the form that it takes). 

Relationship with yourself 

Sadly, it is not uncommon for people with 

a long-term condition to tell me that they 

hate themselves and/or feel ashamed 

of their body. While I can understand 

the unhappiness and suffering, it is not 

good for anyone to hate and constantly 

feel ashamed of themselves. Neither is 

it good for children to be shown that 

such feelings are an appropriate way 

to live with a condition. Again, easy to 

say, but not so easy to address. In his 

book “The Compassionate Mind”, Paul 

Gilbert shows how self-hatred keeps 

destructive feelings alive, whilst stifling 

enjoyment, learning and creativity. The 

most important and enduring relationship 

you have through your life is the one with 

yourself. If that relationship is full of 

hatred and shame, then the implications 

for other relationships are serious. Selfhatred 

and shame prevent effective selfcare 

and inhibit the ability to appropriately 

self-sooth in stressful situations. Paul 

Gilbert’s book has many good ideas and 

exercises aimed at helping people to learn 

how to like (and ultimately love and care 

for) themselves. The booklet “Relationships 

& communication: with yourself and with 

others”, available from The Pituitary 

Foundation, details the commonest 

difficulties reported by individuals with 

a pituitary condition, in relation to their 

relationship with themselves and with 

others. The booklet also contains a variety 

of suggestions on how to improve selfesteem 

(your relationship with yourself), 

as well as practical advice on dealing with 

various relationship difficulties. 

Healing, or the process towards selfacceptance 

when you have a condition 

that makes you different to others, is not 

easy. I would argue that (self) tolerance 

is the key (just as it is an important 

ingredient in successful marriages!). 

Children, young people, and even some 

adults, need good role models who show 

how to tolerate our humanity, accepting 

the strengths and weaknesses that we 

each have to work with. It is the hardest 

thing in the world (particularly as a young 

adult) to be significantly different from 

your peers. Conformity is valued, while 

difference is scorned and belittled. And 

yet, if everyone is the same, from where 

do we get the “outside view”, the fresh 

pair of eyes? If everyone thinks the 

same, where are the new solutions and 

fresh ideas going to come from? In order 

for a society to grow and develop, we 

need variety. I know both from personal 

experience and from working with my 

clients, just how difficult it is to walk 

the path of being different from others, 

whatever the cause of the difference. 

Learning to value yourself, appropriately 

caring and looking after yourself and 

working with the difference, can take a 

lifetime to learn, although some people 

learn how to do it more quickly ■ 


Professional articles 

11 

Winter vaccinations 

Alison Milne, Endocrine Specialist Nurse 

Hello everyone, 

I 

can hardly believe that we have 

reached our autumn edition of 

Pituitary Life and along with that 

comes the thought of dark nights and 

winter stretching ahead. This seems 

to have come around so quickly this 

year, especially when we have had 

such a variable summer regarding our 

good old British weather! 

I am often asked about whether it is 

advisable and safe to have the winter flu 

jab and vaccinations so with that in mind 

I thought I would give you some pointers. 

Vaccination against pneumonia and 

influenza is commonly given to groups, 

such as the elderly or very young, or those 

who are most at risk. 

The flu vaccine changes every year to 

fight the latest strains of flu, so even if 

you had a jab last winter you need another 

one this year to stay flu safe. The jab 

doesn’t contain the ‘live’ virus so it cannot 

give you the flu. 

The flu vaccine is available for free on 

the NHS for: 

• Anyone over the age of 65 

• Pregnant women 

• Anyone who is very overweight (with 

a body mass index over 40) 

• children and adults with an underlying 

health condition (particularly longterm 

heart or lung disease) 

• Children and adults with weakened 

immune systems 

• An annual flu vaccine nasal spray is also 

now offered to healthy children aged 

two, three and four years old, and to 

children in school years one and two 

Although steroid dependent patients, 

(whether primary Addison’s or secondary 

pituitary) are not mentioned in these lists, 

you definitely fall under the umbrella of 

requiring the vaccinations. 

Remember, your steroids are a 

replacement therapy and therefore will 

not cause any interaction or problem with 

the vaccines. 

When should I have it? 

The best time to have the vaccine is in 

the autumn, between September and 

early November. There is no actual 

deadline but, where possible, should be 

vaccinated before flu starts circulating in 

the community. 

Will I have any side effects? 

Serious side effects of the flu vaccine 

are very rare. You may have a slight 

temperature and aching muscles for a 

couple of days after having the jab, and 

your arm may be a bit sore where you 

were injected. It is unlikely that you will 

need to increase your steroids during this 

time unless the symptoms persist and you 

are becoming increasingly unwell. 

Some flu facts: 

• The flu jab can’t give you flu 

• The flu jab is perfectly safe 

• The flu virus changes, so you need a 

flu jab every year 

• If you’re pregnant, the flu jab doesn’t 

harm your unborn baby. In fact it can 

protect your baby from flu for the first 

few months of life 

• The flu jab also protects against swine 

flu 

• The flu jab isn’t just for older 

people – pregnant women, 

those with health conditions, 

carers, and those with 

weakened immunity should all 

get the jab 

• The flu jab protects people 

of all ages 

• Flu isn’t just a cold, it can be 

a really serious illness 

Who should have the 

pneumococcal vaccine? 

A pneumococcal infection can affect 

anyone. However, some people need 

the pneumococcal vaccination (pneumo 

jab) because they are at higher risk of 

complications. 

These include: 

• All children under the age of two 

• Adults aged 65 or over 

• Children and adults with certain 

long-term health conditions, such as a 

serious heart or kidney condition 

• Please seek advice from your GP or 

endocrinologist if you are unsure 

whether or not you should have it. 

• This vaccine is not given annually, like 

the flu jab. 

• People with a long-term health 

condition may need just a single 

one-off pneumococcal vaccination or 

five-yearly vaccination depending on 

their underlying health problem. 

The aim when you are steroid-dependent 

is to protect yourself against illness if at all 

possible and therefore this is where getting 

vaccinated gives you the best chance of 

avoiding infections. Your recovery, if you 

succumb to a serious infection can be 

longer and more complex when you are 

steroid-dependent. 

Top tips: Basic hygiene plays an important 

part in preventing the spread of infection 

• Washing and drying your hands properly 


12 Professional articles 

• Use of hand sanitisers especially when 

out and about in the community 

• Use disposable tissues instead of cloth 

handkerchiefs 

Please feel free to contact me on the 

Endocrine Nurse Helpline (0117 370 

1317) if you wish me to give a refresher 

of the sick-day rules and when you should 

increase your steroids. 

NB: The Endocrine Nurse Helpline is available 

on Mondays, 10:00am to 1:00pm and 6:00pm 

to 9:00pm, also on Thursdays 9:00am to 

1:00pm 

For more information, speak to your 

GP or local pharmacist, or visit www. 

nhs.uk/conditions/flu/Pages/ 

Introduction.aspx ■ 

Summer edition: 

Understanding Cortisol Tests 

We are grateful for the feedback by our readers on this article and 

would like to remind people that no test can be 100% reliable. The 

main message to remember is, if symptoms persist and/or there is a 

high clinical suspicion of pituitary failure, then referral and assessment by an 

endocrinologist is required ■ 

Amdipharm Mercury (AMCo) Group 

Hydrocortisone sodium phosphate 

100mg/ml and 500mg/5ml solution for 

Injection will now be available from 7 

September 2015 at the distributor for 

sales. Please note Hydrocortisone sodium 

phosphate 100mg/ml (and 500mg/5ml 

solution) for injection replaces the brand 

Efcortesol Injection. This is marketed by 

AMCo and is generic equivalent to brand 

Efcortesol ■ 

An interview with Youlie, 

a diabetes insipidus (DI) patient 

1. How long have you had DI? 

Since 1990. 

I can’t be sure about when my DI 

first started but I can remember that 

by the time I sat exams at the end of 

my first year at sixth form college I 

was desperate to go to the loo well 

before the end of a two hour exam, 

despite the fact I had gone to the loo 

right before the exam started. 

2. Did it take long for you to be 

diagnosed? 

I wasn’t diagnosed until November 

1995 when I was in hospital having 

my pituitary tumour removed. Even 

then it took until the day of discharge 

for my DI to be acknowledged This 

was despite the fact that I had been 

keeping a fluid balance chart since I 

was admitted, which showed that I 

was going to the loo at least once an 

hour during the day and about once 

every two hours during the night and 

I was constantly making trips to the 

kitchen to refill my water jug. 

I’d also visited the GP several times 

during the five years before diagnosis 

and mentioned my increased thirst 

and need to constantly go to the 

loo, but each time I’d been tested for 

diabetes mellitus and, of course, the 

test came back negative. 

3. What was your experience of the 

Water Deprivation test? 

I’ve been lucky enough never to have 

had to have one! Even now (i.e. 20 

years after diagnosis), I can remember 

very clearly how I felt on occasions 

prior to starting treatment when I 

hadn’t been able to get any fluid to 

drink for some reason (and the relief 

when I did eventually manage to get 

a drink) so I’m relieved that I didn’t 

have to go through that again for a 

formal water deprivation test. 

4. Did you find fast relief from your 

first dose of desmopressin? 

Very (see answer 6). 

5. What type of desmopressin were 

you given at the start? 

Desmospray. 

6. How did you manage this new 

medication– was it easy or did 

it take a while to manage your 

symptoms? 


Professional articles 

13 

I struggled to get used to the 

medication at first. I think that it was 

because it was such an extreme from 

going from needing the loo pretty 

much constantly to not at all and the 

corresponding change in my thirst/ 

drinking patterns and to a certain 

extent it felt abnormal after so many 

years of having untreated DI. 

7. Does your GP understand DI and 

support you? 

Apart from the visits to a GP 

between 1990 and 1995 when I was 

tested for diabetes mellitus, my local 

GP has had no involvement with the 

DI-aspect of my pituitary condition. 

8. How does having DI impact on 

your life now? 

I still rarely leave the house without 

a full water bottle and am aware 

when I’m away from home of the 

availability of toilets. If there’s any 

doubt where/when I’ll next have the 

opportunity to fill the water bottle/ 

visit the loo then I’ll take whatever 

opportunity presents itself. For 

example, I always go to the loo just 

before I’m due to get off a train 

or just before the seat belt sign is 

illuminated on a plane when coming 

in to land. Just yesterday evening I 

had to change my route back home to 

stop at a supermarket on the way so 

I could use the toilet because I knew 

that if I held on until I got home I 

would have been in considerable 

discomfort by the time I arrived back. 

In particular, unexpected traffic jams 

always have the potential to cause 

problems when travelling. 

The impact on my life now though 

is negligible compared to what it was 

before diagnosis/treatment. 

9. Have you tried or used another 

type of desmopressin medication 

at any time? 

Yes, I’ve used tablets in the past and 

for a while was prescribed the non- 

Ferring desmopressin nasal spray. 

10. Was this better for you? 

No, I found that the tablets took 

much longer to start working than 

Desmospray and also didn’t last as 

long so I was needing to get up to go 

to the loo during the night and then 

take more tablets during the day. I 

went back to using the spray and used 

to keep some tablets to use during the 

day if the spray ran out, especially if 

I was in a situation where it wasn’t 

convenient to keep going to the loo. 

Whilst I was using the non- 

Ferring nasal spray I found that the 

problems with dose inconsistency 

were even more pronounced than 

when using the branded Desmospray. 

In particular, my usual dose wouldn’t 

get me through the night so I was 

having to take additional doses to try 

and manage my DI symptoms. 

11. Is there anything you do or eat 

for example which makes your 

normal dose less consistent? 

I tend to find that the normal dose of 

spray that I take doesn’t last as long 

when I’m on holiday in a hot country 

and I need to “top it up” mid-late 

afternoon. 

I also find that having a cold or 

bad hay fever can make the spray less 

effective, although I heard from a 

pharmacist that it can also have the 

opposite effect because hay fever can 

make the inside of the nose more 

sensitive to the spray. 

Different foods don’t seem to affect 

the consistency of the dose for me. 

I did try an alternative medication 

(under the guidance of a qualified 

practitioner) and that caused 

havoc with the effectiveness of the 

desmopressin medication. Since this 

experience I am very cautious of 

trying alternative medications. 

12. Do you feel that our free 

resources to help DI patients 

have been valuable; have you used 

any of these in public places to 

access a toilet or shown a medical 

professional? 

The DI patient booklet was very 

useful when I got together with my 

partner – I gave him that to read and 

it saved me having to explain as much 

about the condition. I just “topped 

up” the booklet by explaining how 

DI affects me personally. 

13. Although you’ve had DI for some 

time, would you say that you find 

it a part of you now - easy to deal 

with or not? 

Yes, it’s just something that’s become 

part of my daily life and on a whole it 

doesn’t have too much of an impact. 

DI doesn’t stop me doing anything 

that I want to do although it may need 

a bit of consideration in advance. 

14. What is the worst part of this 

condition, for you? 

The varying effectiveness of the dose 

and the inability to predict/control 

this. Generally this doesn’t cause too 

much of a problem but it can make 

things a bit uncomfortable/awkward 

when the medication runs out. Whilst 

at home or out with friends/family 

who are aware of my condition, 

frequent trips to the loo go almost 

unnoticed, but if I’m working at a 

customer’s premises I tend to feel a 

bit self-conscious if I keep having to 

excuse myself to go to the toilet or 

ask to get a drink ■ 


14 Patients’ stories 

Gail Weingartner, 

Area Co-ordinator Solent Support Group 

I’d like to tell readers about how 

attending a meeting entitled 

‘Getting Steroid Replacement Right 

& Minimising the Side Effects’ has 

changed my life. This was run by 

Professor Peter Hindmarsh in London 

in March this year. As the title says, 

this was about getting our steroid 

replacement right for us as individuals 

and has totally turned on its head, 

how we as pituitary patients have been 

advised is the optimum methodology 

for our daily hydrocortisone 

replacement. 

I have been a pituitary patient since 

diagnosing myself in November 1992 

and subsequently became a founding 

member of The Pituitary Foundation at 

the launch in 1994. Many readers know 

of my struggle over the years with what 

I have called my ‘blip’ days, which can be 

described as my body saying “enough is 

enough, I need to recharge my batteries”. 

I experience total fatigue together with a 

massive hangover-type feeling, without 

the enjoyment of a glass or two the night 

before! The only thing I can do is sleep, 

sleep, sleep (with a desire to keep eating) 

for anywhere between one day (best 

scenario) and four days (worst). 

This has affected my life hugely, with 

time off work and being so unreliable 

socially, but most significantly, this has 

also had such an emotional impact. The 

frequency of this scenario had worsened 

over the years; sometimes weekly, 

fortnightly or if I was lucky, once a month. 

For many years I have taken my 

hydrocortisone three times a day; the 

biggest dose (approx. 65%) immediately 

upon waking, 20% at midday and the 

final 15% at 5.30pm. I frequently had 

to increase the dose on a blip day, which 

sometimes helped, but at other times, 

that was me wiped out in bed yet again. 

I would still plan a social life with friends, 

partner and family but they increasingly 

realised that I quite often wouldn’t make the 

event, because of my blip days. I’ve missed 

out on lots of special occasions, but I’m 

preaching to the converted aren’t I? Lots 

of you understand exactly what I’m saying 

here. Apart from feeling bloody disgusting 

(excuse my language), this has made me 

feel worthless, useless and as if I should be 

trying harder to ‘keep going’. Of course 

I’ve tried to work through it lots of times, 

which occasionally has been successful but 

invariably, it’d be back to bed to yet again, 

sleep, sleep, and more sleep. 

Any improvement on the above would 

have been welcome but I couldn’t have 

imagined my quality of life could actually 

improve so much. 

So, back to that amazingly interesting 

day with Prof Hindmarsh, which was 

about exploring the side effects of steroid 

therapy, how cortisol replacement can be 

measured and methods for improving 

treatment. From when I first heard about 

this meeting, it was stressed that this was for 

congenital adrenal hyperplasia, Addison’s 

and pituitary patients and importantly, for 

Graph showing circadian rhythm is similar in adults & children 

ADULTS as well as children. I want to 

reiterate that this is for both children and 

adults, because approximately 18 months 

ago, when I only had a little information 

about this methodology and shown it to 

an endocrinologist, she dismissed it very 

condescendingly saying it was only for 

children! 

new regime 

I have described my old hydrocortisone 

replacement routine and will come to my 

new regime shortly. Firstly, I want to make 

it absolutely clear that there is of course, 

the science behind this “working towards 

a single gold standard care protocol for 

all (including adult care) with adrenal 

insufficiency”, which was fully explained 

by Prof Peter Hindmarsh during his 

presentation. But, I won’t be attempting 

to do that here because I’m not qualified 

or indeed informed enough, to do so. 

Here though is a circadian rhythm 

graph showing how cortisol production 

is similar in both adults and children who 

produce the hormone in the normal way 


news Patients’ stories 

15 

(lucky them!) You will see from this that in 

the early hours of the morning (1am) the 

production of cortisol starts to steadily 

rise with it peaking at approximately 

6.30am. Wouldn’t it be fantastic if we 

could truly mimic how our bodies would 

naturally produce cortisol with our doses 

of hydrocortisone? At the presentation we 

learnt that, and I quote, “Hydrocortisone 

has a quick onset and the cortisol peaks 

to the highest level usually around one 

to two hours after being taken. The 

cortisol obtained from the tablet lasts in 

the blood circulation between four to six 

that the cortisol would have been slowly 

depleting in my blood circulation and 

then from perhaps 11.30pm onwards, 

there would be little, if any cortisol, in 

my body until taking my morning dose 

around 6am. Is it any wonder I was 

getting up, feeling like a zombie until the 

hydrocortisone kicked in and then quite 

often, probably because I was so depleted 

anyway, the hydrocortisone never actually 

managed to bring my cortisol up to the 

level required to make me feel anywhere 

approaching normal. Below is a further 

graph showing this. 

Bearing in mind and I quote once again 

“The cortisol obtained from the tablet 

lasts in the blood circulation between 

four to six hours” and also taking into 

account that we learnt how cortisol is 

inactivated by chemical changes that 

generate removal from the body in urine 

and faeces, my normal hydrocortisone 

dose is now split into six doses over each 

24 hour period. I have NOT increased 

my daily dose, I am just taking the same 

overall daily dose more frequently; I view 

this as a drip feed effect, which is shown 

in approximate percentages below: 

3am = approx. 22% 

7am = 42% 

11am = 15% 

3pm = 7% 

7pm = 7% 

11pm = 7% 

Are you wondering if taking 

hydrocortisone at 7pm, 11pm and 3am 

in the morning is affecting my sleep? I 

would say my sleep is probably better, 

even though it is a pain in the botty woken 

up by alarm at 3am, I usually turn over 

and go straight back to sleep. 

Graph showing circadian rhythm with superimposed example of the cortisol levels achieved in an individual taking 

two doses of hydrocortisone a day 

hours.” Research has also shown that the 

range for 50% of the dose to be used 

up in different people can be anywhere 

between 40 - 225 minutes. So, just having 

a single blood cortisol measurement or 

the cortisol day curve taken over several 

hours in hospital (not even over 24 hours) 

is unlikely to show where the individual 

falls between these two extremes. Dosing 

needs to be tailored to the individual and 

cortisol lasts differently depending upon 

the time of day. 

With my old hydrocortisone routine, 

where I was taking my final dose at 

approximately 5.30pm, it makes sense 

larger amounts than necessary 

This is quite a complicated graph, 

but it does illustrate the fact that for 

considerable periods of time the patient is 

either receiving larger amounts of cortisol 

than is necessary or there are periods of 

time when the individual is under-replaced 

or totally cortisol-deficient. 

After leaving the meeting, my sister 

Joy and I took the Underground to 

Waterloo to travel home and, using this 

remarkable information presented to us 

by Prof Hindmarsh (which now makes 

total sense), Joy devised my current 

hydrocortisone regime. 

postives 

The positives of my new regime far 

outweigh the one negative 3am dose, in 

that I have more energy, stamina and my 

quality of life has improved far beyond 

my expectations. Yes, I still experience 

blip days but they are not so frequent and 

(I hardly dare tempt fate by saying this) 

are only lasting for a single day before I 

bounce back. Writing this makes me feel 

quite emotional because life has improved 

so much and it is all down to that meeting 

presented by Professor Peter Hindmarsh 

back in March ■ 

Copyright graphs reproduced with kind 

permission of Professor Peter Hindmarsh 

& Kathy Geertsma 

References: www.cahisus.co.uk 

www.cahisus.co.uk/leaflets.htm 


16 Patients’ stories 

Chris’s story 

Unlike so many patients who 

struggle to get a diagnosis 

of hypopituitarism, mine 

was instantaneous. 46 years ago, 

whilst serving in the Army, I had a 

disagreement with a hand grenade 

causing a piece of shrapnel (about the 

size of my little fingernail) to enter 

my head via the tear duct in my right 

eye. It severed the central optic nerves 

of my left eye, caused a spinal fluid 

leak, damaged my hypothalamus 

and destroyed my pituitary gland. It 

also caused meningitis. I’m almost 

embarrassed to say that this was not 

in some international conflict but on 

a training exercise near Portsmouth! 

My accident did however warrant a 

short report in the Daily Telegraph! 

Very sadly for me, it destroyed most 

of my childhood memories. 

weeks in a coma 

I was rushed to the neurological ward 

of Southampton General Hospital, 

where I spent a number of weeks in a 

coma followed by further time on the 

metabolic ward to assess my replacement 

therapy. I do remember that after I was 

spotted enjoying the company of a 

nurse, my consultant added a tablet to 

my prescription. Being rather naïve, I 

asked the Sister what this was - to which 

she replied “it’s like a tot of brandy to 

make you randy!!” It was a testosterone 

tablet! Over the years this changed to an 

injection, (which my poor wife Judy had 

to administer every four weeks) to the gel 

I now use. 

When I reached the age of 40, I 

presented my endocrinologist (Dr Richard 

Buckle) with a bottle of champagne to 

celebrate the fact that I had, due to him, 

then lived as many years before, as after 

my accident. Amazingly, after another 26 

years I am still going strong. 

A number of years ago I had an MRI 

scan on my knee due to a torn cartilage. 

I advised the nurse that I had a piece of 

shrapnel in my head but she said this 

wouldn’t be a problem. As I was moved 

into the scanner feet first, I could feel a 

strange feeling in my head. This turned 

from strange, to then painful as I moved 

further in to the scanner. It took me a 

while to realise but I finally worked out 

that the magnets were trying to pull 

the shrapnel out of my head. A most 

unpleasant experience and one I shall not 

be repeating! 

I’m an eternal optimist and a great 

believer that there is always someone 

worse off than me and this gets me 

through the occasional “off day”. An 

accident like mine makes you realise how 

fragile life can be and so I have tried many 

things – a bungee jump, a reverse bungee, 

two parachute jumps, a day’s rally driving, 

a day trip on Concorde and I also became 

a “born again biker” to name but a few! 

delirious 

One of my worst pituitary-related 

incidents was when I was under so much 

stress at work that I became very run down 

and wasn’t eating or sleeping properly. 

Being a bit of a poser, I said to the girl I 

had just started a relationship with “I’m 

doing some presentations in London, why 

don’t you come down and stay in the hotel 

with me?” It didn’t quite work out the way 

I hoped, as she had to call the emergency 

doctor out at 4.00am, as I had a very high 

temperature and was delirious. She was 

told that I needed to go home and see 

my GP and/or endocrinologist urgently. 

When she got me home, my GP said that 

I couldn’t be left on my own so her only 

option was to take me back to her house! 

To cut a long story short, I never went 

back to my own place and six months 

later we were married and are still very 

happy 17 years later! I don’t know where I 

would be if it were not for Judy. 

About 15 years ago my endocrinologist 

suggested I try growth hormone 

injections. Unfortunately, the only effect 

was that my joints became swollen so he 

agreed that I should stop it. 

eye problems 

In August 2001, I awoke one morning 

and had this strange “curtain” in my right 

eye – had it been in my left, I probably 

wouldn’t have noticed! This turned out to 

be a small tear in my retina which, using 

a laser, was skilfully stitched back into 

place. Unfortunately, a more major tear 

occurred three months later, as a result 

of which, I had to endure two, four-hour 

operations and a number of smaller ones. 

During this very difficult time we went to 

a local Spanish property exhibition and, to 

cut another long story short, we ended up 

going on an inspection tour and bought a 

villa – that’s a danger in a relationship of 

both partners being impulsive! 

I then discovered that I was covered 

by my employer’s permanent health 

insurance scheme so that if I was unable 

to continue in the same job, I could stop 

work but still be paid a good proportion 

of my previous salary. That silver lining 

meant that Judy and I could afford to 


Patients’ stories 

17 

go and live in Spain, which we did for a 

wonderful 10 years until we returned to 

the UK last year. 

too much indigestion 

As a War Pensioner I was fully covered by 

the Spanish Health Service. On one of my 

first visits to the GP I was asked why I did 

not take a stomach protector considering 

I took steroids which are known to cause 

indigestion. For more than 30 years 

I had lived on indigestion tablets and 

never went anywhere without them. She 

prescribed me a suitable tablet and I have 

not taken an indigestion remedy from that 

day to this. 

more tablets 

On another occasion I went to see a 

consultant to see if anything could be 

done about my arthritis and the way some 

of my finger joints were fusing together. 

He couldn’t do anything about the arthritis 

but he did diagnose extremely high blood 

pressure, so I started on another tablet! 

One further story from Spain is that on 

my last visit to my endocrinologist, she 

diagnosed Type 2 Diabetes - so more 

tablets! 

We are now firmly settled back in 

Shropshire with our four Spanish rescue 

dogs. My replacement therapy has been 

pretty settled for some time and my sight 

is also stable. I still try to treat every day 

as if it were my last, as you never know 

what’s round the corner ■ 

Who wants a simple life anyway? 

Alastair’s story 

My life was very normal: I was a 

15 year old who had joined a 

new school the previous year 

and enjoyed everything one would 

expect of someone this age. I’d had 

my fair share of accidents including 

two broken arms, a cracked skull due 

to a stray golf club and operations 

on both knees. However, these were 

about to become minor in comparison. 

always feeling cold 

My mum noticed things were not quite 

as they should be: I was drinking an 

inordinate amount, I was always cold and 

she thought my body was not developing 

properly. Luckily somewhere deep down 

she knew something was wrong and, 

thankfully our GP trusted her instincts 

and pursued the results from a blood test 

earlier in the year. 

under-functioning thyroid 

Two months later I had my first 

appointment with a paediatrician at our 

local hospital. Blood tests suggested 

my thyroid was under-functioning which 

led to further tests over the following 

months. In July 2002, I was referred to Dr 

Liz Crown, a paediatric endocrinologist 

at Bristol Children’s Hospital. Following 

even more tests I was diagnosed with a 

craniopharyngioma and started thyroxine 

and hydrocortisone. From birth, I had 

always been big for my age so it was 

suggested that I see Mr Rick Nelson, a 

Consultant Neurosurgeon at Frenchay 

Hospital as it was thought my skull 

may be large enough to undergo transsphenoidal 

surgery – a type of surgery 

that none of the paediatric neurosurgeons 

could perform. Luckily, it was and the 

tumour, which was the size of a satsuma, 

was excised in August 2002. I returned 

to school at the end of September with 

the aim of finishing my GCSEs and 

undergoing radiotherapy in Bristol in 

parallel. The fact I was able to do this 

and succeed in completing my exams was 

only made possible due to my parent’s 

determination and willingness to spend 

months of their life in a Travelodge! 

Over the following months I 

started desmopressin, Genotropin 

and testosterone injections. I found 

Genotropin difficult to self-administer at 

first and my testosterone injection is not 

the most enjoyable thing to have every 

three months, even if I do get some time 

off work! 

I believe that due to my age at the time, 

the criticalness of my illness rather passed 


18 

Professional Patients’ stories articles 

This is not to say I haven’t had to adapt 

my lifestyle due to certain constraints, I 

certainly have and at times have found 

this hard to do. An example of this is my 

body shape and weight. When I started 

taking medication I noticed that I put 

weight on easily. To solve this I have 

become very hard on myself over both 

my food intake and also the amount of 

exercise I do. I don’t get annoyed about 

the need to do this although it has been 

difficult accepting that, however hard 

I work-out, it is impossible for me to 

become toned! 

me by and I mainly felt annoyed that it 

stopped me playing sport. However, I did 

go on to lead a relatively normal school 

life, albeit with a few ups and downs 

linked to my medication and learning 

what I could and, more importantly, could 

not do. One event that will always stick 

in my mind was learning that drinking 

alcohol whilst being low on sugar was not 

the best idea. My mum came to collect 

me from a school dinner to find me on 

my own, lying unresponsive on the grass 

with little on! As soon as she had given 

me Sprite and a banana I came to, but the 

worst part was that I couldn’t remember 

what had happened to get me there. I was 

lucky, but learned that I must always let 

people I socialise and work with, know 

that I have a medical condition and what 

to do in an emergency, no matter how 

alien it feels to do that. 

gap year adventures 

After leaving school I, like many others, 

wanted to go on a gap year. Although the 

list of countries I could visit was heavily 

restricted, I was allowed to visit Fiji for a 

few weeks at the end of a trip to Australia 

and New Zealand. The fact I started 

the journey carrying six months’ worth 

of medication and needing to haul this 

around all three countries without losing 

it or letting it get too warm was something 

of a challenge. It was definitely a year 

where I learnt a lot about myself and my 

limitations and I am still not sure whether 

not being able to do a bungee jump was a 

blessing or curse…..! 

I have had fantastic support all the way 

through my journey from family, friends, 

doctors and many others. At 

the beginning, I found it hard 

to both accept my illness and 

also tell others about it and 

this hit home when I realised 

my older brother had told all 

his friends about it before I 

had said anything to mine. 

However, over time I have 

become much happier talking 

about it and now mention it to 

pretty much anyone, including 

telling my girlfriend on our 

first date! 

After my gap year, I 

completed a five year Master’s 

degree and now hold down a 

full-time job in London for 

a company specialising in 

natural catastrophes. There 

have been many struggles 

to get where I am today; 

however, I firmly believe that 

these have helped shape me 

into what I am, a person who 

rarely regrets and always looks 

to the next adventure and what 

else there is to achieve in life. 

lead a great life 

If I can ask you to take one thing away 

from my story, it is that there is nothing 

you can do to change the fact that 

you have a pituitary illness but it is still 

possible to lead a great life and one that 

has many more ups than downs. I realise 

the future will hold further challenges but 

from where I currently stand, I wouldn’t 

change anything about my past ■ 

If you are a patient, family member 

or friend and would like to share your 

story in a future Pituitary Life please 

get in touch with Pat: 

pat@pituitary.org.uk 

or 0117 370 1315 


Raising awareness 

19 

Wow! What an amazing year 2014 - 2015 proved to be. We were truly overwhelmed 

by your incredible, continued support! Thanks to your efforts we comfortably 

smashed the half a million pounds barrier for the first time in our 20 year history, 

which means more amazing work we will be able to do as a result! Let’s see if we can now 

repeat the feat for 2015 - 2016. We want to thank each and every one of you for making the past 

year so special ■ 

Christmas 

Raffle 

Included in this issue of 

Pituitary Life you will 

find two raffle books, 

if you would be willing to sell these book on our 

behalf it would be most appreciated. Thanks 

to your support, our Annual Christmas Raffle 

continues to go from strength-to-strength and we 

are delighted to say that in 2014, we raised £6400. 

Let’s see if this year we can exceed £7000 for the first 

time ever. 

We have some fantastic prizes: 

1st Prize – Apple iPad 

2nd Prize – A luxury hamper, ideal for the festive period 

3rd Prize – £50 cash 

If you feel that you can sell more than the two books 

enclosed, please e-mail jay@pituitary.org.uk to request 

additional books ■ 

Team Pituitary 

How would you fancy joining ‘Team Pituitary’ at the 

Brighton Marathon in 2016? We have guaranteed 

spaces and would love YOU to join us. E-mail jay@ 

pituitary.org.uk if you fancy the challenge. All we ask is for 

£35 registration and a minimum sponsorship of £350 ■ 

Pituitary Life life | autumn 2015

20 Professional Raising awareness articles 

Pituitary Skydive 

On Sunday 9 June, 20 daring participants from all over 

the UK travelled to Swindon to take on the “Pituitary 

Skydive” and between them they managed to raise a 

staggering £15,000 for The Foundation. 

The sun shone; it was a beautiful day for all of our skydive 

participants. Many took on the challenge for the pure adrenaline 

rush, whilst others were taking it on to conquer a fear of heights. The 

common denominator after everyone had jumped was that every single 

person wanted to go straight back up. Our thanks go to each and every one who 

took the plunge but we have to give a special mention to Graham Galley. This incredibly 

dedicated fundraiser cut short a family holiday by two days so that he could join us, then 

after the 12,000 foot jump he faced a seven hour drive home to Sunderland! Commitment 

to the cause to say the very least. 

The Pituitary Foundation would like to say a huge thank you to everyone who took on this daring challenge…The question 

remains, who will be joining us at next year’s Pituitary Challenge event? ■ 

Pituitary Foundation Orbit 

(London) Abseil - June 2016 

Are you brave enough to take on this challenge? Situated on the Queen Elizabeth 

Olympic Park in London and standing at 262 feet, the ArcelorMittal Orbit is 

the UK’s tallest sculpture and the UK’s highest freefall abseil! 

This is an unmissable way to see the city skyline! Go over the edge - on an adrenalinefuelled 

ride down to the ground. You’ll take in the breath-taking views 20 miles across 

London, including iconic buildings such as The Gherkin, St. Paul’s, Canary Wharf and 

Wembley Stadium, as well as the world-famous sporting venues in the Queen Elizabeth 

Olympic Park. 

Registration cost £35 

Suggested Minimum sponsorship £350 

To register your interest in this high octane challenge then please e-mail 

jay@pituitary.org.uk 

*Note the exact date for this event will be announced in November as bookings for 2016 

are not taken until then* ■ 


news Raising awareness 

21 

Edinburgh to Paris - A tale of two legends! 

Two guys, two cities by 

pedal, paddle and puff from 

Edinburgh Castle to the Eiffel 

Tower. Geordie Tulloch and Patch 

Russell, both students at Edinburgh 

University, who share a love of sport 

and supporting the underdog, took on 

this truly epic challenge to raise funds 

that were to be split between three 

charities. They chose to support The 

Pituitary Foundation for their close 

friend, Rory Landale, a long-term 

member of The Pituitary Foundation. 

The challenge saw them cycling 550 

miles from Edinburgh to Dungeness, then 

kayaking 22 miles across the Channel, 

before finally running five marathons 

in four days - all the way to the Eiffel 

Tower in Paris! These two remarkable 

teenagers managed to raise a staggering 

£27,000 in the process, with The Pituitary 

Foundation receiving just over £9000. 

We cannot thank them or commend 

them enough for this absolutely incredible 

achievement! To do just one leg of this 

journey would have been a huge feat, to do 

all three is phenomenal. They should both 

be incredibly proud of your achievement. 

Patch Russell said: “We chose The 

Pituitary Foundation because of the 

amazing work it does to help people like 

Rory; the work they have done has helped 

him and his family beyond what they 

thought it ever would, and if we can raise 

even a little amount to say thank you and also 

to help others in similar situations then that 

is great. The charity is small in comparison 

to others but it certainly punches far above 

its weight, making lives better and putting 

smiles on peoples’ faces.” ■ 

Gifts in Wills 

During the last financial year (end June 2015), we are thrilled to 

announce that we received a staggering £199,185.50 thanks to 

the generosity of supporters who have dearly departed. 

We were very fortunate that two supporters alone left hugely 

substantial amounts but what we should also point out is that a gift 

in a will does not have to be substantial. We appreciate any amount 

whatsoever, whether that is a few pounds or several thousand 

pounds. The important thing is that every gift left to us in wills 

goes towards the purpose that it was intended and that is providing 

support to more and more pituitary patients in their hour of need. 

On that note, we would like to take this opportunity to 

thank the late Mr Martyn Chatterley Coak for leaving us a very 

generous gift of £5000 in his will. We received notification of 

this gift recently. 

As part of our Legacy Strategy we still have limited FREE Wills available to you, our valued members. 

These Wills are worth £100! 

Please help to inform our Legacy work! 

(All information to be treated in strictest confidence – please cut out this slip & return in the freepost envelope provided) 

If you already have your Will drafted and have included a gift to The Pituitary Foundation would you please let us know? Unlike 

many charities who have well-established legacy programmes in place, The Pituitary Foundation currently has a very limited 

understanding who has pledged a gift in their Will. We can assure you that all information will be treated in strictest confidence 

and is purely to help to inform our legacy strategy. 

I already have a Will drafted and have pledged to leave The 

Pituitary Foundation a pecuniary legacy (a specific gift) of 

Name: 

Address: 

I already have a Will drafted and have pledged to leave The 

Pituitary Foundation a residual legacy (a percentage of my 

Estate) of 

I have drafted my Will but have chosen not to leave a gift 

to charity 

I have not drafted a Will but would be interested in The 

Pituitary Foundation’s FREE Will offer. Please contact me 

for further details 

Telephone Number:

22 wall of thanks 

Rotary talk: 

Thanks to Julie Imeson who 

gave a talk to the Rotary Club of 

Southampton. The club kindly gave 

a donation of £150 in recognition 

of her talk. 

Melody Makers Amateur 

Dramatics: Our thanks 

to the parents of member, 

Julie Jones who are part 

of an amateur dramatics club in 

Anglesey called Melody Makers. 

They raised £350 from profits 

of a show called ‘A Taste of the 

Musicals’ and donated this to our 

funds. 

Tough Mudder : Thanks to 

Jarrod Gritt who completed 

Yorkshire Tough Mudder for us in 

August and raised a fantastic £180. 

Jarrod is pictured in an ice bath! 

Golden Wedding: Many 

congratulations and thank you to 

Neville and Susan Goddard 

who celebrated their Golden 

Wedding Anniversary. The loving 

couple asked for donations in lieu 

of gifts and managed to raise a 

fantastic £225. 

Bupa London 10K: Thanks to 

Fiona Silver who took on the 

Bupa London 10K and managed to 

raise a superb £609.80. 

Inca Trail: 

Thanks to Jack Case who 

completed the famous Inca Trail 

Trek to Macchu Picchu and 

managed to raise over £600. 

50 mile cycle: 

Our thanks to Colin Flood who 

took on a 50 mile bike ride cycling from 

Liverpool to Chester and then back 

to Liverpool. Colin raised £140 in the 

process. 

Cycle to the Alps: 

Bill Graham cycled from his 

home in Hertfordshire, unaided, 

to the French Alps in support 

of his wife. Bill took on this 

long and arduous challenge and 

raised a spectacular £4000 in the 

process! Thanks Bill, we hope the 

saddle sores have now eased. 

Gaming Marathon: Avid game 

fans, Clare and Tristan Michie, 

organised a 24-hour gaming marathon. 

They raised a fantastic £188.40 in the 

process, which was kindly matched by 

their employers, Morrisons. 

Congratulations to Ian Atkinson 

who took on the ‘Dragonera’ Swim. This 

was a 9.5km swim around an island, just 

off Majorca. Ian raised over £2000 in 

the process. 


23 

Richmond Half Marathon: 

Many congratulations to Jenny 

Raymond who ran the Richmond 

Half Marathon and raised a staggering 

£8000 (correct at time of going to 

print). Well done Jenny and many 

thanks for your incredible efforts. 

Come dine with me: 

Annette Lobo and the 

Kirkcaldy Raith Rotary 

Club organised a ‘Come 

Dine with Me’ event and 

raised a marvellous £100! 

4 Country challenge: 

Jon Dear took on the four country 

cycle challenge. He set off from his home 

in Worcester, covering France, Spain and 

eventually finishing the challenge in Portugal. 

Jon raised a staggering £6805 of which The 

Foundation received half. Many thanks Jon for 

taking on this epic challenge. 

Family of runners: 

Congratulations to Laura Usher 

and her daughters, Sophie and Megan, 

who ran the 10K Great Midlands Fun 

Run. They raised a fantastic £465 in the 

process. 

Great North Run: Congratulations and 

thank you to our team of Great North 

Run runners. The team of eight raised 

a spectacular £4000 (correct at time of 

going to print). 

Llanelli to Newcastle: 

Nick Doughty cycled all the 

way from Llanelli in West Wales to 

Newcastle in support of a friend 

who is a pituitary patient, Catherine 

Gladwyn. Nick raised a sensational 

£650 in the process! ■ 


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The views expressed by the contributors are not necessarily those of The Pituitary 

Foundation. All information given is general - individual patients can vary and 

specific advice from your medical advisors should always be sought. 

We do not endorse any companies nor their products featured in this edition. 

© 2015 The Pituitary Foundation 

• Registered company number 3253584 

• Registered charity number 1058968 

The Pituitary Foundation 

86-88 Colston Street, Bristol, BS1 5BB 

helpline@pituitary.org.uk www.pituitary.org.uk 

Editor of Pituitary Life: Pat McBride 

Working to support pituitary patients 

Printed by Moulton printers www.moultonprinting.com. 

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Issue 31

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