Issue 28

Autumn 2014 edition 

Issue No: 28 

£5.00 inc P&P for non-members 

It’s Pituitary 

Awareness 

Month this 

October 

Christmas 

goods 2014 

Our bumper 

32-page 20 th 

Anniversary 

edition 

– how far 

we’ve 

come! 

• Paramedic produces adrenal crisis learning video 

• The progress of endocrinology towards understanding the pituitary 

• Four patients share their stories 

• New! Post-surgery fact sheet 

Pituitary life | autumn 2012 

www.pituitary.org.uk

2 

news News 

Our 20 th Anniversary – 

how far we’ve come 

Pat McBride, Editor 

I 

am delighted, both as a member of 

staff and as a patient, to celebrate 

20 years of The Foundation. The 

original team of trustees Sue Thorn, 

Prof Stafford Lightman and Prof John 

Wass, set up The Pituitary Foundation in 

1994. Sue managed the publication of all 

the original leaflets, including writing one 

of them, edited the newsletter, dealt with 

the patient calls, registered the company 

and charity, and helped with the set-up 

of the early local groups. As soon as 

funds allowed, she worked with the other 

trustees to enable The Foundation to 

become an independent organisation. 

Sue’s contribution to making The 

Foundation a success was enormous 

and this was recognised at our Training 

Weekend in November 2013 when she 

and the other founding members were 

awarded Honorary Lifetime Membership 

of The Foundation. 

From our very first national 

conference in Bristol in 1997 we have 

held ten further national and regional 

conferences around the UK; our 20th 

anniversary conference in November 

will be our 12th. The Foundation’s 

first Pituitary News newsletter 

was produced in 1996, which 

was a mere eight pages, but read 

from cover-to-cover by those of 

us who, up until then, hadn’t had 

any information at all. Over the 

years it has undergone many 

changes and has evolved 

into the glossy, multi-page 

Pituitary Life. 

Our current booklets are 

mainly based on the 

original leaflets 

we produced 

back then, as the 

information has 

been patientfriendly, 

clear 

and accurate from the start. Of course, 

our resource library has been updated to 

reflect newer procedures and treatments 

and expanded, to help answer the many 

questions you ask. All of our resources 

are verified by our Medical Committee. 

This committee of 25 members is 

made up of consultant endocrinologists, 

pituitary surgeons, paediatric 

endocrinologists, specialist endocrine 

nurses, a psychologist and more recently, 

a paramedic. Our wonderful volunteer 

base has grown to over 100 – their 

commitment and hard work helps so 

much to carry on our vital work. 

I can clearly remember the day I heard 

the Foundation had been launched. 

Within minutes, I phoned the number I 

was given (by my endocrinologist back 

then) and as soon as I spoke to them, I 

knew they understood. At last, there was 

information to be had and the feeling 

of being a ‘rarity’ and alone with this 

condition vanished. The eight frustrating 

and lonely years from my diagnosis, 

without any pituitary knowledge 

or support, were over! I have been 

privileged to speak with and meet many 

courageous and wonderful patients and 

their families over 

the years. Here’s 

to another 20 

years (and more) 

of support for 

all of us with 

pituitary 

problems ■ 

contents 

News for autumn 2-9 

Local Support Group news 7 

Professional articles 10-12 

(also continued on pages 21-25) 

Raising awareness 13-20 

(pull out 8 page section) 

Wall of thanks 14-15 

Patients’ stories 26-31 

Newly 

extended 

Endocrine 

Nurse Helpline 

hours 

It is with thanks to our 

generous supporters and 

members, that we are in a 

position for Alison Milne, our 

Endocrine Specialist Nurse to 

increase her Helpline hours. 

From 8 September 2014, Alison 

will hold an extra shift on Mondays 

between 10:00am to 1:00pm. 

We are delighted to be able to 

announce this, as we are aware that 

Alison’s Helpline is very popular 

and that her support to our 

community is greatly needed ■ 

Pituitary Life | autumn 2014

news News - Awareness Month 

3 

Awareness Month October 2014 

We hope to hugely improve 

pituitary awareness across 

the UK with our Awareness 

Month this year, but we can only do 

this with your help! 

The Foundation has been preparing 

the campaign and awareness activities 

for the last few months and we are really 

excited about the impact this October 

could have, if everyone pulls together. 

We’d be delighted if you would help 

us to make a big statement this year… 

whichever of the below activities you can 

help with, large or small, it can make a 

massive difference! 

This year we are focusing on 

improving understanding of adrenal 

crisis experienced by steroid dependent 

pituitary patients. We are running 

an exciting targeted campaign which 

involves writing to politicians, and we 

have developed a brand new adrenal crisis 

leaflet for GPs and A&E staff. There are 

also many other fundraising and awareness 

activities to get involved with. This year 

also happens to be The Foundation’s 

20th Anniversary and to help mark this 

special occasion and how far we have 

come in those twenty years, we are asking 

supporters and local groups to hold parties. 

If you decide to have a party, please let us 

know so that we can promote it on the 

website (more information on page 5) ■ 

Write to your local parliamentary or 

assembly member about adrenal crisis. 

Email rosa@pituitary.org.uk to be sent the template letter. 

We are encouraging everyone to write to their local 

politicians, explaining the importance of the lifesaving 

steroid hydrocortisone and urging them to 

support The Pituitary Foundation’s campaign; this includes 

missed, or inadequate, hydrocortisone administration in a 

healthcare setting - on the list of NHS Never Events. 

What is a ‘Never Event’? 

NHS Never Events are serious, largely preventable patient 

safety incidents that should not occur in the NHS, if the 

available preventative measures have been implemented. The 

Never Event list currently includes 25 incidents. 

Why should missed or inadequate 

administration of hydrocortisone be a 

‘Never Event’? 

When patients who have adrenal insufficiency (pituitary 

patients who have secondary adrenal insufficiency) become 

unwell, they can be at risk of going into an adrenal crisis 

because their body is unable to naturally increase the output 

of steroid from their adrenals to help the body overcome 

the illness or stressful situation. Patients taking replacement 

steroid (hydrocortisone) need more steroid to prevent them 

going into adrenal crisis in the first place, or if the patient 

is experiencing an adrenal crisis, to appropriately treat the 

adrenal crisis, to prevent a possible life threatening situation. 

Unfortunately, too often, healthcare workers do not realise the 

urgency of treatment for acute adrenal crisis or fail to heed the 

requests of well-informed patients for hydrocortisone. This is 

why we believe that missed, or inadequate administration, of 

hydrocortisone should become a Never Event. 

How can I join this campaign? 

Research has been carried out to identify influential MPs, 

MSPs, MLAs and AMs with a specific interest in health or 

rare disease. (Please see our table of contacts for every area 

covered by a Support Group). These researched contacts will 

allow a more targeted campaign and hopefully Members of 

Parliament, Assembly Members in Wales and Northern Ireland 

and Members of the Scottish Parliament will support us in our 

campaign. The description of a ‘Never Event’ will be explained 

clearly within the template letter. 


4 News - Awareness Month 

Politicians to contact 

Aberdeen South 

South Scotland 

Birmingham 

Brighton / Sussex 

Bristol 

Cardiff 

Central Lancashire 

Derby/ Nottingham 

Doncaster 

Edinburgh 

Glasgow 

Guildford 

Hull West - Hessle 

Ipswich and Suffolk 

Kent 

Leeds 

Liverpool 

London 

Manchester Central 

Mid and West Wales 

Newcastle 

Northern Ireland 

Norwich and Norfolk 

Oxford 

Plymouth and Exeter 

Salisbury 

Dame Anne Begg (Labour) 

Aileen McLeod (Scottish National Party 

and sits on the rare diseases Scottish 

cross party group) 

John Hemming (Lib Dem) 

Simon Kirby (Conservative) 

Kerry McCarthy (Labour) 

Mark Drakeford Minister for Health 

and Social Services, (Labour) 

Rosie Cooper (Labour) 

Anna Soubry (Conservative) 

Hugh Bayley (Labour) 

Malcolm Chisholm (Labour) 

Bob Doris (Scottish National Party) 

Anne Milton (Conservative) 

Alan Johnson (Labour) 

Dan Poulter (Conservative) 

Helen Grant (Conservative) 

Rachel Reeves (Labour) 

Luciana Berger (Labour and 

Cooperative) 

Norman Lamb Minister of State at the 

Department of Health as of 2012 (Lib Dem) 

Lucy Powell (Labour) 

Rebecca Evans (Labour) 

Jenny Chapman (Labour) 

Nigel Dodds (Democratic Unionist Party) 

Norman Lamb (Lib Dem) 

Andrew Smith (Labour) 

Ben Bradshaw (Labour) 

John Glenn (Conservative) 

Sheffield/Crewe and Nantwich Edward Timpson (Conservative) 

Shrewsbury 

Solent 

Swindon 

Ian Mearns (Labour) 

Caroline Dinenage (Conservative) 

Robert Buckland (Conservative) 

These are the politicians with the greatest 

interest in rare disease issues, regardless 

of which parties they are aligned to. We 

have researched contact information for 

all these politicians which can be found 

on The Foundation’s website. Just go to 

the ‘Get Involved’ section and then to 

‘Campaigns’ tab where you will see the 

Awareness Month details. Alternatively, 

when you email rosa@pituitary.org. 

uk to be sent the template letter, if you 

include which politician you are writing 

to, we can send you their address. 

If you live in an area that is not listed 

in the table, we recommend writing to 

one of the following, as these politicians 

have a particular interest in rare diseases. 

The Foundation will also be contacting 

these main politicians: 

Norman Lamb Lib Dem MP (Minister 

of State, the Dept of Heath). 

Dame Anne Begg Labour MSP. 

Rebecca Evans Labour AM ■ 


News - Awareness Month 

5 

Adrenal crisis 

leaflet distribution 

Help us spread awareness about adrenal crisis to GPs, ambulance 

personnel and A&E staff by taking along our brand new leaflet to 

your local clinics and hospitals. This is a really worthwhile, but nontime 

consuming activity, that everyone can get involved with! We are delighted to 

have been able to have a new leaflet designed for Awareness Month. Order yours 

today on our website shop or by emailing enquiries@pituitary.org.uk 

(These leaflets will be included if you are ordering an awareness pack) ■ 

It’s The Pituitary 

Foundation’s birthday! 

An adrenal 

crisis is life 

threatening! 

A pituitary patient 

on hydrocortisone, 

who is in shock, 

been in an accident 

or is vomiting, 

URGENTLY needs 

a higher dose of 

hydrocortisone 

(usually by 100mg 

injection) 

l Think - Adrenal 

Insufficiency 

l Realise 

- Adrenal Crisis! 

l Act NOW to treat 

this patient and 

save their life! 

www.pituitary.org.uk 

Give an 

awareness 

talk in your 

local area 

Throw a party during October to celebrate our 20 year anniversary 

Parties are a fun way to spread awareness. Pop the kettle on, get baking and 

invite some friends round for some sweet treats. A cake sale, raffle and games 

are always popular! You may even like to hold a party themed fundraiser in your 

office, school, university or college. Order your party pack now to help you plan your 

event – email jay@pituitary.org.uk 

Making special memories: After you have held your event, make sure you send 

us your photos as we intend making a special 20th Anniversary picture collage and we 

would love your photo to be included. We want to be able to look back on this photo 

in another 20 years with pride, as we celebrate our Ruby Anniversary. 

Our ‘Cake me up Selfie Campaign’ will also celebrate our 20th birthday – please 

see details of this campaign in your Fundraising Focus pull-out in the middle of this 

edition of Pituitary Life ■ 

This could be anywhere 

from a local school, 

place of work, WI or 

rotary club. The Foundation 

has developed materials to help 

support people giving a talk 

on pituitary conditions. These 

materials include PowerPoint 

slides and notes to read from, to 

make it easier - so let us know if 

you’re interested ■ 


6 News - Awareness Month 

Organise or take part in an awareness walk 

Walk for awareness! We are 

asking you to organise a 

walk in your area – the 

event can be as small or as large as 

you want. You can stroll a mile, stride 

a midnight marathon, or walk or amble 

a 5k in your local park. It is a great way 

to keep fit, get your friends, family and 

work colleagues involved and collect 

sponsorship for your efforts. Every step you take and every 

penny raised will be helping to raise awareness – together 

we can make a real, positive change to 

the pituitary journey. You could even 

make your walk light-hearted and eyecatching 

by encouraging fancy dress. 

Whether all of the participants gather 

sponsorship or just a few, the important 

thing is the taking part. Last year many 

Local Support Groups, members and 

supporters all over the country held 

walks helping to raise over £4,000 between them. Can you get 

your walking boots on this year? ■ 

Request your 

Awareness Pack today 

Your kind donations really do make a HUGE difference 

to our small charity. If you are unable to get involved with 

Awareness Month but are willing to donate to The Pituitary 

Foundation instead, please fill in the ‘Make a gift’ section of the 

Awareness Month insert within this issue of Pituitary Life. Last 

year, thanks to your generosity, we managed to raise a sensational 

£1,860 from Awareness Month donations; wouldn’t it be great if 

we could exceed the £2,000 mark this year? ■ 

To request an awareness pack, which contains 

all resources and information for you to hold 

your awareness event, walk or anniversary party, 

please complete the form in the Awareness Month 

insert. Or contact Jay, our Fundraising & Marketing 

Manager on 0117 370 1314, or Rosa, our Volunteers, 

Campaigns & Projects Manager on 0117 370 1316 

(alternatively email enquiries@pituitary.org.uk) 

Please make sure you let us know about your awareness 

activities, as this allows us to measure how much of an 

impact Pituitary Awareness Month has around the UK! ■ 


Local Support Group News 

7 

This section contains quick 

newsflashes from a few of 

our Support Groups around 

the UK! 

To gain extra information and support, 

why not take a look on our website to 

see if one of our 32 groups meets near 

you. Visit www.pituitary.org.uk, or 

contact Rosa Watkin on 0117 370 1316, 

or email helpline@pituitary.org.uk 

LIVERPOOL 

A big congratulations to the Liverpool 

Support Group who celebrated their 

18th Birthday recently! For almost two 

decades, the members have tirelessly 

supported their fellow patients and 

carers, providing information at 

friendly, welcoming meetings. 2014 

has been another very successful year 

for them so far with regular monthly 

meetings being held, medical students 

visiting and lots of local awareness and 

fundraising taking place. The group 

have very kindly donated twice to 

The Foundation during this summer. 

The total of these donations was 

an amazing £420 and we are hugely 

grateful for their support. We would 

like to say an enormous ‘thank you’ to 

all the group members. 

SOLENT late IT donation - 

thank you 

We would like to apologise to The 

Solent Support Group for leaving 

them out of the IT donations thank 

you list in the last edition. This was 

due to a confusion on our database 

about what the donation had been 

put towards and we are very sorry for 

this error. We are hugely grateful for 

the £500 donation from the group, 

which was a huge help to us in funding 

our new IT equipment! Thank you 

to all the group members and the 

committee. 

The group have all their 2014 

meetings planned; for more 

information about meeting details 

contact Gail on 01428 651526. 

PLYMOUTH, EXETER, TRURO 

and TORBAY 

This support group is going from 

strength-to-strength under the very 

hardworking Area Co-ordinator, Mike 

Luxton, who is doing an absolutely 

magnificent job! As of this summer, 

the group is now covering Torbay as 

well as the previous three areas, so 

if there are any interested patients 

in Torbay do contact Mike at mike. 

pituitarylsg@gmail.com or phone 

01872 501375. The group now has 

well over 50 members and will always 

welcome new faces. This group is 

known as a roaming group and usually 

meets twice a year in each of the 

four locations. Meetings are always 

in a hospital setting and all meetings 

usually have doctors speaking, but 

include discussion time for patients 

and carers also. Some group members 

travel to attend all the meetings but 

some just attend their local meeting 

which is fine too. The next two 

meetings are Torbay on 10 September, 

and Truro on 30 September. This 

group is providing a much needed 

support network in an area that a 

couple of years ago had very little 

coverage; The Foundation is hugely 

grateful to Mike for being such a 

dedicated volunteer. 

“The support group is like a second 

family to me now; we can talk 

freely about pituitary and everyone 

understands.” (Quote from a support 

group member) ■ 

National Pituitary Conference reminder 

Don’t miss the biggest pituitary event of the year - Saturday 8th November 2014! Book your place at our National 

Pituitary Conference by calling 0117 370 1316 or via the website shop. 

Rates for members are subsidised at just £34. 13s to 25s can attend for just £20. Please book soon to ensure your place, 

as this conference is proving very popular. The highly esteemed endocrine team from University College London Hospitals will be 

delivering the main sessions, alongside many different workshops covering topics from carers’ rights and benefits, to hydrocortisone 

information. The conference venue is easily accessible for central London and there is FREE parking. 

Bookings must reach us by October 31st ■ 


8 News 

Hospital management of 

hypopituitarism 

Ihave had two operations on my 

pituitary gland to remove tumours. 

I now need to take several pills daily to 

replace basic hormones, which were once 

controlled by the pituitary gland. One of 

these is hydrocortisone, which is needed 

to keep me alive. 

In the event of a shock to my system, 

the pituitary does not trigger the release 

of more hydrocortisone and, without 

being given extra replacement, I would 

die. I’m 67 and I needed a total right hip 

replacement. I saw the consultant and 

he understood my dilemma regarding 

hydrocortisone cover and arranged for 

me to see his anaesthetist. Fortunately, he 

was aware of the cortisol problems and 

“happy” to proceed, so I was sent for 

pre-op assessment and a briefing. 

On the Wednesday, I went in to 

hospital for a total hip replacement. 

All hydrocortisone precautions had 

been prepared and all staff had been 

briefed. After the operation, I was kept 

in sterile conditions to minimise the risk 

of infection. All medication (including 

my hydrocortisone) was administered 

as needed – staff changeovers were 

seamless, the ward was spotless and the 

food was great. 

I came out again on the Saturday 

afternoon a new man - sore, but pain 

free; my life restored. 

Well done and thank you to all 

concerned. 

Diabetes insipidus (DI) 

The surgeon and anaesthetist reassuringly 

understood about the patient’s 

hydrocortisone needs, but the ward staff 

had no understanding about hydrocortisone 

pre-op and of their DI, post-op. 

Pre-op, the patient increased their 

hydrocortisone tablets, using their own 

supply, whilst waiting for surgery and the 

appropriate hydrocortisone cover given 

by the surgical team. 

Despite explaining about the condition 

DI, showing their Patient Care Card 

and medication for DI, the ward staff 

member hung this up above the patient’s 

bed. Confusion still unfortunately exists 

that DI means diabetes mellitus ■ 

New! Translated hydrocortisone 

emergency cards 

We now have our usual emergency hydrocortisone cards 

available in French, Spanish and Turkish for patients who are 

travelling to these destinations. The cards are credit-card size to 

carry easily in your wallet or purse. One side is in English for your personal 

and emergency contact details; the reverse side explains your hydrocortisone 

emergency needs in the foreign language. These cards will be available shortly 

to order from our website shop, at a cost of £2 each. We will announce on 

our website when they are in stock to order ■ 

Ross Fletcher – 

in memorial 

We were very saddened to hear 

that Ross passed away on 24 

July 2014. Ross was a member 

of The Foundation from the beginning, 

having had successful surgery in 1974 for 

a pineal germinoma, but which resulted 

in pan-hypopituitarism. In 2004, Ross 

suffered a small stroke but continued to 

enjoy life, with holidays and his bowling. 

In February 2013, Ross suffered a severe 

stroke which left him unable to speak 

or swallow; he had to be fed through 

a tube in his stomach which caused 

complications because of his diabetes 

insipidus. 

During the last three months of his 

life, he was stable and his wife, Thea, 

managed to bring him home for visits 

from his nursing home. 

Thea told us that the doctors in the 

stroke ward Ross was on, had never 

treated a patient with hypopituitarism, 

although they did persevere and 

eventually manage to stabilise him so 

he could be discharged. A contributory 

factor of diabetes insipidus appeared on 

his death certificate and Thea wanted to 

highlight Ross’s experience to prompt 

awareness for non-pituitary health care 

professionals. 

A collection amounting to £200 was 

held at Ross’s funeral and we thank 

Thea, Ross’s family and friends for their 

very kind and generous donations, in his 

loving memory. Our sincere condolences 

go to Thea and her family ■ 


News 

9 

Invitation to participate in a research 

study on pituitary conditions 

The Pituitary Foundation 

is working with Dr Sofia 

Llahana, Consultant Nurse in 

Endocrinology at UCLH, to conduct a 

research study which aims to explore 

the health status, quality of life and 

educational needs of patients with 

pituitary conditions and their families. 

The ultimate objective of this study is to 

gather baseline information which will 

guide future research on developing a 

structured self-management programme. 

The study will be conducted over 18 

months, in two consecutive phases: 

1. A questionnaire survey open to all 

patients with pituitary conditions 

2. Focus group interview with a smaller 

number of patients to provide in-depth 

exploration of self-management needs 

How can you help? 

We would be very grateful of your 

participation in the study. We anticipate 

sending out the questionnaires, along 

with detailed information on the study 

in October, following ethics approval. 

It will take 20-30 minutes to complete it 

and you can chose to do this on-line or 

on hard copy sent by post. You can also 

express your interest to participate in the 

focus group interviews which will take 

place in London early next year; travel 

expenses will be reimbursed. 

Participation in the study is voluntary; 

only the researcher will have access to 

the data which will be anonymised and 

presented in a collective matter, with 

no means of identifying individual 

responses. Although the study may not 

have a direct benefit to you at this stage, 

it is expected to improve the overall 

understanding and raise awareness of 

pituitary conditions. 

For any queries regarding the study 

please contact Sofia Llahana on 

sofia.llahana@uclh.nhs.uk 

or 0203 447 7584 ■ 

New! Post–surgery fact sheet 

Alison Milne, our endocrine specialist nurse has produced an informative 

and patient-friendly fact sheet for patients who are about to have 

pituitary surgery. This new Foundation resource will help patients and their 

families gain an understanding of the different types of surgery carried out, what to 

expect immediately after your operation and the following few weeks and months. 

There is also practical advice and tips included, to make you feel as reassured as possible. 

This new fact sheet can be requested via email to helpline@pituitary.org.uk or by 

ordering from our website shop for a posted hard copy at £2.50, or as a free download. 

If you have any questions you want to ask about before or after your surgery, 

Alison will always be happy to hear from you. Her number is 0845 450 0377, 

Mondays: 10am to 1pm, 6pm to 9pm and Thursdays 9am to 1pm. 

Our newly updated Surgery & Radiotherapy booklet is now available too, from 

our website shop, to order or download ■ 

Thank you 

The Foundation wishes 

to thank Tony Woods 

for his hard work and 

commitment over the years, 

during his time on our Trustee 

Board. Tony, a patient, has 

been able to bring his valuable 

experience as a patient and 

represent other patients as a 

Trustee. We do wish him all the 

very best for the future ■ 


10 Professional articles 

Adrenal Insufficiency: 

Improving Paramedic Practice 

Andy Baines, Advanced Paramedic, North West Ambulance Service 

Acute adrenal insufficiency can lead 

to severe morbidity and even death if 

ineffectively managed. Unfortunately, 

in the pre-hospital setting patients 

with acute adrenal insufficiency often 

receive sub-optimal care. The early 

administration of hydrocortisone in 

these cases is critical and significantly 

improves outcomes to the extent it 

can be life-saving. Such therapy is 

part of current paramedic practice, 

however, there is evidence that 

hydrocortisone is rarely used in the 

pre-hospital setting. Ultimately, 

patients with acute adrenal 

insufficiency may currently be suboptimally 

managed by paramedics. 

Introduction 

Adrenal emergencies in the prehospital 

field are rare, but when 

encountered, the outcome can 

be fatal if it is not recognised and treated 

rapidly (Shulman 2007). The greatest 

challenge for pre-hospital clinicians 

is to recognise this elusive condition; 

the signs and symptoms may be nonspecific 

early in the presentation and 

the diagnosis may not be suspected 

or immediately clear. Coupled with 

the vague nature of the presentation, 

a gap in paramedic education means 

that the care provided to patients with 

acute adrenal insufficiency is not always 

optimal (McBride 2012). These factors 

combined, suggest that much can be 

done to improve the response to this 

group of patients. To improve practice, 

a project was undertaken to address this 

gap in paramedic education. 

Defining the problem 

Within the 17 years that I have been an 

operational paramedic in North West 

Ambulance Service (NWAS), I have 

encountered several patients who were 

adrenal insufficient. The occasions where 

I offered the optimal treatment package, 

as recommended by the Joint Royal 

Colleges Ambulance Liaison Committee 

2013 (JRCALC), were after I had received 

higher level clinical learning and education. 

It would be impractical and negative, to the 

current cost improvement programme that 

NWAS is facing, to offer this education to 

each of its 2200 responding clinicians. 

Consequently, this gap in skills and 

knowledge has been the driving factor 

to develop a package which incorporates 

e-learning and a film of a patient’s 

journey through an adrenal crisis. An oral 

presentation will also be delivered to the 

senior paramedics within NWAS. This 

blended learning approach is ultimately 

more effective as Ruiz (2006) makes 

the point that this approach combines 

technology and traditional instructor led 

training. 

The package will be accessible on 

NWAS intranet e-learning zone and 

be available to all 5000 staff in NWAS. 

Once completed, the clinicians will be 

able to download a certificate stating 

that they have completed the module 

and be encouraged to self-reflect on 

the new education gained. Reflection in 

medicine is seen as vital, as this allows 

consideration of the wider context 

and the implications of the experience 

and the assimilation of the skills or 

knowledge into the existing knowledge 

base (Branch and Pranjape 2002). The 

introduction to the package is illustrated 

in figure 1: 

Figure 1: Introduction to 

NWAS E-Learning Module 


Professional articles 

11 

Quality enhancing solutions 

Within the United Kingdom, each 

ambulance service clinical quality is 

measured through ambulance quality 

indicators, these are benchmarked 

against other ambulance trusts NHS 

England (2013). The system analyses 

the clinical care delivered to patients 

with common pre-hospital conditions. 

Because the conditions reported on are 

relatively frequent in the pre-hospital 

arena it can be argued that clinicians 

largely now offer excellent care. This can 

be evidenced by NWAS achieving 97% 

stroke care bundle in 2012-2013 (NWAS 

stroke care bundle 2013). 

As discussed earlier, the prevalence of 

adrenal insufficiency is a rare event with 

approximately 800 patients in NWAS 

area of responsibility. Hahner et al 

(2010) report that 42% of these patients 

will have at least one adrenal crisis per 

year. This would equate to approximately 

336 possible pre-hospital presentations. 

Taking this into consideration, to arrange 

an audit system for adrenal insufficiency, 

would be extremely difficult because of 

the low expected numbers in comparison 

to the 1.4 million patient journeys made 

by NWAS annually. 

This has led the project to explore 

other methods of evaluation, such as 

patient involvement and satisfaction, 

rather than using traditional ambulance 

methods. A patient representative was 

heavily involved in the development of 

the training package and this package 

will be delivered to the patient group 

at the monthly meeting in July 2014. 

Patient involvement is highlighted by the 

Royal College of General Practitioners 

statement on safety and quality of care. 

One of the key messages is that patients 

should be encouraged to be actively 

involved in planning their care and the 

development of services at practice level 

(RCGP curriculum 2013). The Health 

Foundation, which is an independent 

charity working to improve healthcare 

in the United Kingdom, emphasise 

the importance of this patient-centred 

approach by reporting that if health 

staff can engage patients and help them 

feel involved, patients are likely to hear 

the advice they are given and more 

importantly act on it (health.org.2013) 

By direct patient involvement with 

the patient group and by continuous 

interaction with the patient group 

representative, a level of achievement 

can be claimed. This can be evidenced on 

production of the accompanying film of 

a patient’s journey through adrenal crisis, 

to be displayed on the package which 

is displayed in figure two. The patient 

states that she “finally feels like someone 

is listening and, more importantly, doing 

something about it” ■ 

References 

Branch W, Pranjape A (2002) 

Feedback and Reflection; Teaching 

Methods for Clinical Settings. Academic 

Medicine. 2002.77; 1185-1188 

Hahner S, Allolio B, (2009) 

Therapeutic Management of adrenal 

insufficiency. Journal of Clinical 

Endocrinology and Metabolism. 

April 2009; 94(4); 1059-67. 

Health.org Measuring Patient Views 

On Health Care Quality 

www.health.org.uk 

measuringpatientviews. 

Assessed on 10/04/2014 

Joint Royal Colleges Ambulance 

Liaison Committee (2013) 

Guidelines. UK Ambulance Services 

Clinical Practice Guidelines 2013. 

The University of Warwick. Class 

Professional Publishing. Bristol. 

McBride P (2012) Hydrocortisone 

Emergency in Pituitary Patients. Journal 

of Paramedic Practice, Vol 4 Issue 500 

May 2012 

National Health Service Statistics 

(2013) www. (englandnhs)/ 

ukstatistics/stat/work-arear/ 

ambulance-quality-indicators. 

Assessed on 07/04/2014 

North West Ambulance Service 

Quality Accounts (2013) 

www.nwas.nhs.uk/media/385086/ 

quality_account_2013Assessed on 

07/04/2014 

Royal Colleges of General 

Practitioners Curriculum (2010) 

Statement of Patient Safety and Quality 

of Care. RCGP 30 Euston Square 

London NW1 12 FB 

Ruiz J, Mintzer M, Issenberg B 

(2006) Learning Objects In Medical 

Education. Medical Teacher. Vol 28 

no 7 pp 599-605 

Schulman DP (2007) Adrenal 

Insufficiency Still accused Of Morbidity 

In childhood Paediatrics. 2007 Feb; 119 

(2):e484-94 

Figure 2 Voice video: Patient journey through an 

adrenal crisis 


12 


Hydrocortisone Auden tablets: 

Following work done by Auden McKenzie to demonstrate uniformity of 

distribution for the subdivision of tablets, they can confirm that they have received 

approval from the MHRA to include the following statement in the Patient 

Information Leaflets (which accompany all packs of Hydrocortisone Auden tablets). 

Hydrocortisone Auden Tablets come in two strengths: 

• White tablet marked HYD 10 contains 10 mg hydrocortisone. The tablets are 

scored so that they can easily be broken into halves or quarters. This can allow 

you to take a lower dose of half of a tablet (5mg) or quarter of a tablet (2.5mg). 

• White tablet marked HYD 20 contains 20 mg hydrocortisone. The tablets are 

scored so that they can easily be broken into halves. This can allow you to take a 

lower dose of half of a tablet (10mg). 

This information will allow members to break the tablets into halves or quarters 

and be confident in the dose that they are taking ■ 

State of the Nation: 

do we need a healthcare revolution? 

Dr Sue Jackson, Chartered Psychologist 

This is something of an unusual 

article, and a little background 

might add some clarity. A while 

ago I had a discussion with Pat McBride 

about possible topics for my new regular 

column in Pit Life. Pat told me that the 

September issue of Pit Life would be 

focused on the 20th anniversary of 

The Pituitary Foundation, and then 

asked me what I could write that would 

be in keeping with that topic. After a 

bit of a think, I said I could write an 

article that reviewed the state of care 

(both medical and psychological) for 

individuals with pituitary conditions. 

Pat thought this was an excellent topic, 

as did other people I talked to. And in 

talking about it, I realized just how big 

a topic I’d suggested, and how much 

work would be required to deliver on my 

suggestion. I read a book edited by Linda 

Rio (the first mental health professional 

to serve on the United States nonprofit 

organization, Pituitary Network 

Association’s Board of Directors). Rio’s 

book is called “The Hormone Factor 

Pituitary Life | autumn 2014 

in Mental Health: Bridging the Mind- 

Body Gap” and comprises a series of 

edited chapters, written by a variety of 

specialists, which covers pretty much 

anything you can think of that might 

be relevant to the experience of having 

a pituitary condition, from diagnosis 

onwards. Basically, Rio and her team of 

specialist authors have done my work for 

me; so my aim is to review Rio’s book 

so that if you want to read it, you know 

what to expect, but also to talk about 

what Rio’s book suggests to me about 

the current state of our healthcare in 

relation to pituitary conditions. 

Any of you who saw Professor Wass’s 

excellent documentary on the history of 

hormones will know that we have come a 

long way in terms of understanding what 

hormones are and what they do. Those 

of you who missed his programme, will 

find the same information covered in 

both the introduction and first chapter 

of Rio’s book. While things may have 

moved on, there is still more we need to 

understand about the endocrine system 

and it’s functioning, what happens 

when it becomes disordered, and how 

to return it to normal functioning. Rio’s 

book includes lots of patient stories, 

mostly told in their own words, and a 

common theme is how difficult it is to 

get a diagnosis. Not feeling well, but not 

being believed by doctors, incomplete 

tests carried out, or tests undertaken but 

not followed up. It’s a very sad litany 

of distress, and highlights, for me at 

least, that while we might understand 

more about the endocrine system 

and its working, diagnosing problems 

associated with the endocrine system 

still takes a long time and leaves people 

in a difficult situation, affecting their 

physical and mental health as well as their 

relationships and work life. 

Medicine has moved on, and there are 

increasingly sophisticated ways to detect 

tumours, as well as better techniques to 

operate on them. Chapter 13 of Rio’s 

book contains an interesting series 

of question and answer interviews 

between patients and specialist doctors 

continued on page 21

Professional news Raising awareness articlesSPECIAL 

special 

8 page 

13 

this section can be pulled out - lift out centre 8 pages from stapled spine 

The best year EVER! 

Thanks to your continued support, our last financial year, year ending June 

2014, was the most successful in the history of our charity. Whether you played 

our Lottery, donated, walked, ran, swam, cycled, trekked, jumped out of a plane, took 

on a zip slide, dressed whackily, held a collection, baked or simply popped on the kettle – we 

thank each and every one of you for making it such a successful year. Let’s see if we can build 

on this success for the next year and future years to follow ■ 

2015 Events 

If you would like to take on a challenge to raise funds next 

year, then how about the following: 

25 May 2015 Bupa London 10K: 

We have guaranteed spaces for this event in which you can join 

our Celebrity Ambassador, Stephen Campbell Moore, along 

with actress, Claire Foy, running the streets of central London, 

taking in some of the most amazing sights the City has to offer. 

17 July 2015 Pituitary Pen Y Fan climb: 

Following the success of this year’s event, where over £2,000 

was raised, we will now be making this an annual event. We 

would love you to join us. 

June 2015 Pituitary Skydive: 

Next Spring, due to demand, we are organising a Skydive day in 

Swindon. Exact details are yet to be confirmed but it is likely to 

be mid-June. 

pull-out 

section 

Christmas goodies: 

Included in your Pituitary Life you will find your 2014 

Christmas Catalogue. This is full of great gift ideas 

for loved ones and sees the return, due to demand, of 

The Pituitary Foundation Calendar, this year at a reduced 

price of just £5.00, compared to £7.50 in 2012. We expect 

these goods to be in high demand, order quickly to avoid 

disappointment. *Please note that due to postage costs we have 

had to include a minimum order quantity of £5.00* ■ 

12 April 2015 Brighton Marathon: 

We have purchased spaces once again at the Brighton 

Marathon. This year our team raised over £3,000; let’s see if we 

can get a team together to raise even more during 2015. 

If you would like information on any of these events, or if you 

would like to take part in an event that is not listed, then please 

e-mail jay@pituitary.org.uk or call 0117 370 1314 ■ 

Christmas Raffle 2014: 

Thanks to your incredible support, last year’s Christmas 

raffle was the most successful ever, and then this success 

continued with the Summer Raffle, which raised almost 

twice as much as the previous year. It is a big ask, but we know 

that with your continued support we can make this year’s raffle 

even more successful. Included in your issue of Pituitary Life is 

a book of Raffle tickets. We would be incredibly grateful if you 

2015 Calendar 

could make every effort to sell these tickets. We have been very 

fortunate to have been donated the majority of prizes. We would 

like to thank Gail Weingartner (Venture Photography), Rebecca 

Coonan (Park House Hotel) and Ed Hughes (£50 cash donation). 

Prizes are as follows: 

1st Prize = Apple iPad 

2nd Prize = Luxury Spa Break for two (worth £400) 

3rd Prize = Venture Photography package (worth £245) 

4th Prize = £50 Cash ■ 


14 wall of thanks 

We would like to say a huge thank 

you to Brian Sutterby, 

who nominated us as his chosen 

charity during his term as 

President of the Rotary Club 

of East Hampstead. Thanks 

to the generosity and support of 

members, a fantastic £1160 was 

raised during the year. 

If you are a member of a group or 

society, could you nominate The 

Pituitary Foundation as a chosen 

charity or maybe you could hold 

a one-off fundraising event? If so, 

please e-mail 

jay@pituitary.org.uk 

Colour Run – Lina Needham, her 

sister Coral and husband Andrew 

had a great time taking part in the 

Colour Run Sunderland judging by the 

photos! The three managed to raise a 

fantastic £300 in the process. 

Springtime Tea: We would like 

to thank Mike and Theresa 

Beaven for their incredible 

efforts at their annual Springtime 

Tea, where they managed to raise 

a sensational £461 

Doctor on the Run! We would 

like to thank Dr Sumithra 

Giritharan, Registrar at 

Salford Royal NHS Foundation 

Trust, Endocrine Unit for 

completing the Greater 

Manchester Run on behalf of The 

Foundation! 

Thanks to Newcastle Area 

Coordinator, Martin Crosby, 

who completed two races for us and 

managed to raise a staggering £1250! 

Three Peaks Challenge: 

Friends James Westley and 

Callum Smith took on one 

of the UK’s toughest endurance 

challenges, the UK 3 Peaks – 

Snowdon, Scafell Pike and Ben Nevis 

managing to complete the incredible 

endurance test in under 20 hours. 

Congratulations fellas and thanks for 

the support. 

Poppy Pegler – Congratulations to 

Poppy Pegler, 11, who did a 40 foot 

sky walk and a zip slide as part of the 

AI Awareness fundraising and raised a 

sensational £535.35 in the process! 

Ian Andrews and friends walked 

from Kingswood in Bristol to Weston 

Super Mare, in August, to raise funds 

towards the “Isabella Andrews 

Appeal Fund”. Issy’s dad, Ian, and his 

friend walked the arduous 30 plus miles 

in a very respectable time and managed 

to raise over £800 in the process! This 

now takes the total for the Isabella 

Andrews Appeal Fund to well over 

£10,000 in less than one year. 


Professional news articles 

15 

London to Brighton Cycle: 

Thank you to Oscar Barnes, Daniel 

McDonald, Catherine Budd, 

Brenda McGrandles, Annie O’Brien 

and Geoff Macadam, who took on the 

London to Brighton cycle for us. The team 

look on course to have raised over £2000 

between them. 

Congratulations to sisters, 

Emma McDonald and Ooni Staerk 

who did a sky dive in memory of their brother, 

Aonghas, who sadly passed away at the tender 

age of 14. The daring sisters managed to raise a 

sensational £1626.64 between them, in loving 

memory of their brother. 

Coast to Coast 

Challenge: Teenage friends, 

John Wilson, Jack 

Stephenson, Sam Horn 

and Cameron Hunter 

began their walk on Monday 14 

July 2014 at the town of St Bees; 

the walk was 192 miles long, 

finishing at Robin Hood Bay 

ten days later, on the 24 July! 

The boys managed to raise a 

spectacular £534 in the process. 

Pituitary Pen Y Fan climb: On 

30 July walkers joined us in scaling South 

Wales’ highest mountain, Pen Y Fan, and 

managed to raise a sensational £2300. This 

now annual event will take place every July. 

Thank you to former Area Coordinator, 

Andy Simpson, who walked over 200 

miles in June, from Macclesfield to the 

Glastonbury festival! Andy raised over 

£2000 in the process. 

David Black took on the 

Brecon Beacons Four 

Peaks Challenge and 

managed to raise a sensational 

£1400 in the process. This trek 

encompassed the four peaks of 

the Brecon Beacons National 

Park and consisted of a 17 mile 

trek over rough, challenging 

terrain. 

Adrenal Insufficiency 

Awareness fundraising – 

We would like to thank Rachel 

Pegler who organised an 

Adrenal Insufficiency Awareness 

campaign during the Summer and 

managed to raise over £1,000! As 

part of the fundraising efforts 

Tough Mudder Andy! Thank you to 

Andy Grant, the son of our Glasgow 

Area Co-ordinator, Helen, who completed 

“Tough Mudder Scotland” for us in July. 

This challenging obstacle course proved no 

match for Andy, who managed to raise a 

sensational £435.74 in the process! 

Photography 

fundraising: Our sincere 

thanks to Kate Dalton who 

has been taking photos and 

selling these images online, with 

all donations being made to 

The Foundation. At the time of 

printing Kate had raised £89 ■ 


16 Raising awareness 


news Raising awareness 

17 


18 

Raising awareness 

Bradleys Charity of the Year 

My name is Richard Greetham, 

and I am a Director of 

Bradleys Estate Agents, a 

33-office organisation covering the 

West Country. In May 2013, I was 

diagnosed with a pituitary tumour. I 

wanted to do something to raise awareness, 

but also vitally funds and decided to cycle 

around all of my company’s offices - a 

total of about 400 miles along some really 

difficult climbs and terrain. 

I don’t mind admitting, I have 

always been somebody that has always 

been fairly slow to get my hand my 

pocket, when someone wants to be 

sponsored for certain things, and one 

of the motivators for doing this was 

as a punishment to myself, because 

people are always doing these things for 

a reason, and I now understand those 

reasons. 

I didn’t know where to start in 

terms of fundraising but this is where 

working for a large company can make 

a difference; you never really know how 

popular you are as a person until you take 

on a challenge and I can genuinely say, I 

work with some amazing, generous and 

kind people who together have helped 

me raise over £6000 and we are still 

collecting money; we have a target of 

£10,000 by the end of 2014. 

I was genuinely touched by the 

amount of colleagues (and now friends) 

who took on half marathons, some 

of them hurled themselves down 100 

mile-an-hour zip wires, which is in Wales, 

which quite frankly terrifies the life out 

of me, and I would much rather cycle 

a long distance than do that. We’ve had 

people who put balloons in cars and play 

guess the number of balloons to win a 

prize. Some staff took pictures of where 

they worked and sold them for £5. Other 

offices offered photocopying, fax for a 

small charge which really worked. Also, 

it is amazing how quickly money can be 

raised by aiming for small amounts rather 

than going for hundreds of pounds in 

one hit. I find people are quite happy 

to give you a couple of quid rather than 

£25 or £30. 

I am now near the end of my 

challenge, having ridden my 400 miles, 

which I thoroughly enjoyed; there wasn’t 

a day that I didn’t feel appreciated and 

welcomed by the people I work with. 

The whole company has got behind the 

campaign and made a difference. I am 

proud to be a member of The Pituitary 

Foundation team and would urge 

anybody looking to raise money, to get in 

contact with Jay Sheppard who has been 

an absolute delight to work with, having 

tireless energy and always at the end of 

a phone to help. One of the board of 

trustees, Mike James, came along and 

shared part of the cycle ride with me, 

giving up his time coming down from 

Bristol to the West Country and facing 

some of our hills, which he did and 

cherished, and was a delight to ride with. 

Our thanks to Richard and 

all staff at Bradleys! 

If you work for a company no 

matter how large or small, could you 

nominate The Pituitary Foundation 

to benefit as a Charity of the Year 

partner? Maybe your company could 

support The Foundation by holding 

ad hoc fundraising events? Either 

way, Jay would love to hear from you. 

Please call him on 0117 370 1314 

or e-mail jay@pituitary.org.uk ■ 


Raising awareness 

19 

Legacy 

Awareness Week 

8-14 September 2014 

Did you know that during 8-14 September it was 

Legacy Awareness Week in the UK? Probably 

not. This is a topic that many people would rather 

not think about, certainly not speak about and a topic, that 

many think is not applicable to them. 

It’s a common myth that only the rich and famous leave 

money to charity when they die. This couldn’t be any 

further from the truth. The reality is, that without the gifts 

left in Wills by people just like you, we would not be where 

we are today. 

Charitable legacies have accounted for over 20% of our total 

income over the last 5 years and are absolutely vital to The 

Foundation as a source of income. 

74% of the UK population support 

charities and when asked, 35% of people 

said they’d happily leave a gift in their Will, once 

family and friends had been provided for. The problem is, 

only 7% actually do. That’s why, if everyone left money in 

a Will for The Foundation, as well as your family, you could 

make a huge difference. It could be a little or a lot. So, you 

don’t have to be rich and famous to make a contribution 

that can make a huge difference. You can all do something 

amazing to support pituitary patients just by remembering 

us when writing a Will ■ 

Tax Benefits of leaving a 

gift in your Will 

You may not know this but there can be 

significant Inheritance Tax benefits, if you 

leave a gift to a charity. We appreciate that 

the most important people to look after are your loved 

ones but by leaving a charitable donation you could 

actually be leaving your loved ones more. 

If you leave a gift to The Foundation then its value will 

be deducted from your estate (your money, possessions and 

property) before Inheritance Tax is worked out. Gifts made 

before your death may also qualify for exemption. 

If your estate is liable to Inheritance Tax, you could reduce the amount due by 

choosing to give money to charity. You can either leave a fixed sum (known as a 

‘Pecuniary Legacy’), or part or all of your estate once other gifts have been distributed 

(known as a ‘Residuary Legacy’). You can do this through your Will, or by a 

declaration to the executors or personal representatives, giving instructions as to how 

you would like your legacy to be distributed. If you are leaving money to charity, make 

it clear exactly which charity you want to receive your gift. Gifts made to a charity in 

the seven years before your death are exempt from Inheritance Tax ■ 

Thank you 

We would like to issue a heartfelt 

thank you to the late Rosemary 

Evans who left a substantial 

gift in her Will to The Pituitary 

Foundation. This money will go a 

long way towards ensuring that we 

can continue to be there for future 

generations of pituitary patients. 

If you have not pledged a gift 

at this moment in time would 

you be willing to leave a gift to 

The Foundation in your Will? 

Remember it doesn’t have to be a 

huge donation. We appreciate any 

gifts irrespective of size – whether 

it’s £10, £100 or £1000, every 

penny really does help. Can we 

ask that you please notify Jay by 

e-mailing jay@pituitary.org.uk ■ 


20 Raising awareness 

Cake me up Selfie 

Seeing as it is our 20th Birthday this November, as 

well as being Pituitary Awareness Month during 

October, we want you to help us celebrate 

and raise awareness by taking part in a 

“Selfie” campaign. The “Cake me up” 

selfie. A ‘selfie’ is a photograph you take of 

yourself, usually with your smartphone. 

You will all have heard, or quite possibly 

taken part in the recent phenomenon that 

generated tremendous awareness for breast 

cancer charities, the “No Make-up 

selfie”? Well, this is our 20th Birthday 

twist on this campaign. All you need 

to do to take part is take a photo 

of yourself, preferably looking as glamourous or wacky as 

possible, with a cake in hand to celebrate our birthday! 

Please share the details of this campaign to help us raise 

as much awareness as possible of this campaign. Keep an eye 

out on social media for some well-known faces helping us to 

celebrate by taking part in the “Cake me up selfie.” At the 

end of November, we will produce a photo montage of all 

photographs received, which will be available to purchase 

from our website. This would represent a very quirky, 

amusing gift for anyone you know who’s taken part. 

Don’t forget, the more glamourous, outlandish 

and downright wacky that you look - the better! 

Help us celebrate our 20th Birthday in style, 

whilst helping to raise vital pituitary awareness! ■ 

Steps: 

l Take your selfie and either: 

o Text SELF85 £5 to 70070 

o Visit www.justgiving.com/Pituitary20thBirthday 

l Tweet us your images to @Pituitary_Org using the hashtag #CakeMeUpSelfie 

l Tag your images to our Facebook page The Pituitary Foundation (UK) 

l Send in hard copies, along with a cheque for £5, made payable to 

“The Pituitary Foundation” and post to: Happy Birthday, 

The Pituitary Foundation, 86 Colston Street, Bristol, BS1 5BB


21 

continued from page 12 

highlighting the current state of medicine 

in this regard. However, what is also 

clear is that some patients continue to 

struggle post-operatively despite the 

modern techniques and the hormone 

replacements available, a point borne 

out by the patient stories in Rio’s book 

that touch on this topic. I’ve talked 

before about the need for a shift away 

from the biomedical model that views 

the body as something to cure, towards 

a bio psychosocial model of healthcare 

that takes into account the impact that 

the mind and memory have on physical 

functioning. This point is made countless 

times in Rio’s book by a number of 

different specialists, all quoting Harvey 

Cushing and his idea that Freud’s 

psychoanalytic technique was a backwards 

attempt to deal with pituitary disorders 

by talking when the root of the problem 

was a dysfunctional pituitary gland. It’s 

not a case of either/or, I think we need 

both medical treatments and psychosocial 

support and interventions, and indeed 

various of the authors in Rio’s book also 

advocate joined up multi-disciplinary 

teams to help support patients with 

endocrine disorders of all sorts. 

But there’s a problem - Robert 

Hoffman in Chapter 11 of Rio’s book 

makes the point that mental and physical 

healthcare have become separated. If 

you experience a traumatic event, such 

as a car crash, your physical injuries will 

be treated in hospital, but any traumatic 

stress would have to be discussed with 

your GP and then you would have to be 

referred to a mental health care service. 

But, in thinking about our modern 

healthcare system, it occurred to me 

there is another problem, i.e. it is set up 

to deal with acute (short term) physical, 

or mental problems, for example, broken 

bones, appendicitis etc. I was chatting to 

a recently-retired nurse about this article, 

and she told me that I didn’t understand 

just how much acute healthcare is now 

undertaken in hospitals. She used the 

example of appendicitis; when she first 

started work, at any given point, half of 

the people on the ward would be acute, 

but the other half would be staying in for 

at least a week post-operatively. She told 

me that now a hospital stay following 

an appendectomy has reduced to three 

days, sometimes less. Virtually all the 

patients that are cared for in hospital 

now, in her opinion, are acute cases, with 

patients and family members of patients, 

being expected to take on the burden 

of caring for post-operative and chronic 

(i.e. long term) conditions including 

the administration of complicated drug 

regimens and in some cases the use of 

complicated medical equipment. 

Not only are services fragmented, 

but in my experience, healthcare 

professionals don’t always seem to 

understand what is actually offered or 

experienced by patients when they attend 

the different services. For example, 

there are endless stories of hospitals 

discharging patients from hospital 

on Friday, with enough drugs for the 

weekend, telling them that they can get 

more on Monday from their own doctor. 

But the primary care service doesn’t work 

like that. It’s next to impossible to get a 

prescription filled in 24 hours in some 

areas, and that’s assuming that you’re well 

enough to sort it out. Similarly, there are 

endless stories of GPs having a patient 

turn up in their surgery, but the hospital 

discharge paperwork has not arrived, so 

the GP has no idea why they are there, or 

what it is they are supposed to be doing. 

“But the hospital said…” is a commonly 

heard refrain. 

And there’s another problem – we 

know what recovery looks like for 

someone with an acute condition. We 

expect them to get over it and resume 

their normal activities of living. I doubt 

that you need me to tell you that for 

individuals with a chronic condition it’s 

not like that, and Rio’s book has some 

patient stories that bear this out. The 

aim of the medical experts in Rio’s book 

is to return the body to as near normal 

functioning as possible by whatever 

combination of medical treatments is 

necessary. However, they acknowledge 

that the return to normality by this 

means doesn’t seem to work for everyone 

in that some patients remain significantly 

distressed and continue to report 

problems in daily functioning, and there 

seems to be a great deal of perplexity 

as to why this should be the case. It 

seems to me that there is a general lack 

of understanding that recovery for a 

chronic condition looks nothing like 

recovery for an acute condition. The 

most useful definition of recovery that 

I think we could usefully use as an aim 

in relation to individuals with a pituitary 

condition comes from Anthony (1933) 

and is commonly used in mental health 

services: “A deeply personal, unique 

process of changing one’s attitudes, 

values, feelings, goals, skills and/or 

roles. It is a way of living a satisfying, 

hopeful and contributing life even 

with the limitations caused by illness. 

Recovery involves the development of 

new meaning and purpose in one’s life 

as one grows beyond the catastrophic 

effects of [mental] illness.” Do we 

know enough to be able to do this? 

There are some excellent chapters in 

Rio’s book that clearly document the 

limits of our understanding in relation 

to the psychosocial impact of pituitary 

conditions, and it is clear that despite 

decades of research, there are some 

glaring gaps in our knowledge. 

Rio’s book has been thoroughly 

researched, is well written and has 

something for everyone, and that, I 

think, is the problem. There is a long list 

at the front of the book of all the people 

for whom the contents could be relevant, 

but I think each would be put off by the 

content intended for the others. It’s a 

shame, as it deserves to be widely read, 

but I’m not convinced that it will be. 

I think the final word should go to 

the patient advisors at the Future of 

Health conference I attended in London 

last year, who were very clear that our 

current system of GPs as gatekeeper 

to fragmented services for physical 

and mental health do not serve their 

needs. What we need is something 

of a healthcare revolution, with more 

meaningful engagement with individuals 

with chronic conditions, so that 

appropriate healthcare services do start 

to evolve, preferably with the patients as 

experts in living with chronic conditions 

guiding the process ■ 



Working towards a single gold standard care 

protocol for children and adults with adrenal 

insufficiency - brief notes from this meeting 

Hosted By UCLH & GOSH CAH Support Group 14 June 2014 meeting 

with UK Addison’s Group and The Pituitary Foundation 

Note taker: Alice Jackman. My objective 

in providing this summary of the 

proceedings is to try and convey a few 

key points to those parents of pituitary 

patients who were unable to make the 

meeting. Hopefully these could then 

act as a pointer for the start of further 

research into what might work better for 

their own young person. 

Editor note: Due to space limits, this is 

an abridged version - the full notes are 

freely available for download from 

www.cahisus.co.uk 

Introduction 

Professor Peter Hindmarsh 

The impetus for the meeting came 

from the story reported in the 

Mail about a woman who died 

because the attending paramedics told 

her ‘you just have a tummy bug’, and they 

failed to give her an emergency injection 

of hydrocortisone. 

What do we mean when we 

say adrenal insufficiency? 

It is only a shorthand (not a diagnosis) 

for what is needed, and is a key phrase 

in soliciting appropriate help from the 

ambulance services. It is important to 

keep the disorders that result in adrenal 

insufficiency distinct when providing an 

emergency letter, because the different 

conditions have different aspects 

which need to be considered, once the 

emergency injection of hydrocortisone 

has been administered. 

Problems in adrenal insufficiency 

Dr Karavitaki (Adult Endocrinologist Oxford) 

gave a brief overview of the functions of 

the adrenal glands and listed the incidence 

of adrenal insufficiency as follows: 

Primary adrenal insufficiency: 93-140 per 

million (Arlt & Allolio, 2003) 

Secondary adrenal insufficiency: 125-280 

per million (Arlt & Allolio, 2003) 

The commonest cause for this is too 

much steroid therapy, for conditions such 

as arthritis 

Problems 

1) Timing of diagnosis, the following 

symptoms noted: 

• Anorexia, nausea, vomiting, diarrhoea 

• Weight loss 

• Dizziness on standing, salt craving 

• Increased pigmentation 

• Weakness, tiredness 

• Abdominal pain 

• Joint and muscle pains 

2) 50% of patients had symptoms for at 

least one year before diagnosis 

50% had a crisis which then resulted in 

their diagnosis. 

3) Cortisol replacement needs to mimic 

the natural rhythm of cortisol in 

the blood, known as the circadian 

rhythm and there are no reliable lab 

parameters for correct assessment 

and replacement in Addison’s and 

hypopituitarism, other than the actual 

cortisol concentration. ACTH can 

be measured in Addison’s disease, but 

this is not so easy to do and requires 

special blood samples. However, 

ACTH can be measured during a 24- 

hour profile. 

4) Under-replacement of hydrocortisone: 

this results in impairment of wellbeing 

and is life-threatening if the 

patient experiences an inter-current 

illness. 

5) Adrenal crisis: Statistics seem to 

indicate that, of patients susceptible to 

adrenal insufficiency, 8% have a crisis 

per year. 

Patient education: ensures compliance, 

decreases morbidity 

- Sick day rules 

- Hydrocortisone emergency pack 

- Steroid card, medical alert jewellery 

- Alert doctors and nurses to the need 

for early admission and the need for 

extra hydrocortisone before and after 

surgery and during stays in hospital, 

during severe illness and surgery 

5) Osteoporosis: Doses up to 25mg 

hydrocortisone do not seem to affect 

bone density. 

6) Research from Norway and Germany 

seems to indicate that patients with 

primary or secondary adrenal failure 

have a higher level of disability, a 

lower quality of life and increased 

depression. 

7) Metabolic profile: If hydrocortisone 

replacement is above 20mg there 

appears to be an impact on waist 

measurement. 

8) Over-replacement: results in impaired 

glucose tolerance, and an impaired 

lipid profile. 

Conclusions: 

• There needs to be a greater awareness 

of the diagnoses 

• It is important to find our optimal 

replacement dose to be able to do daily 

life. This is what will minimise longterm 

morbidity and mortality 

• It is vital that patients, support groups 

and health professionals all work 

together to deal with these challenges ■ 


news Professional articles 

23 

Methods of assessing and replacing cortisol 

Professor Peter Hindmarsh 

The following are options for 

assessing cortisol: 

One-off blood sample: very 

unsatisfactory as cortisol varies hugely 

throughout the day and the sample 

indicates a snapshot of that moment, but 

no idea what is happening during the rest 

of the 24-hour period; difficult to relate 

to the time the tablet taken, even if the 

sample taken 2 hours previously. 

Four-hourly day curves: a bit hit and 

miss – not nearly enough information, 

as cortisol can be cleared at different 

rates, you can miss peaks and troughs 

and no indicator of what is happening 

in the evening and early morning as 

hydrocortisone is metabolised differently 

in evening. 

Urine measurements: need quite a bit 

before cortisol is picked up, so it will 

identify a high level of cortisol but not so 

well for low values. If collected over 24 

hours, then it is only looking at cortisol 

breakdown products and does not tell 

you which dose to alter. 

Salivary cortisol: similar problems 

to urine as only good when cortisol is 

high and also susceptible to different 

metabolic patterns in the salivary glands. 

What needs to be measured is the 

cortisol from the hydrocortisone, which 

is being taken to the organs i.e. the 

cortisol in the blood! 

24-hour blood profiles: the most 

revealing solution, usually taken every 20 

minutes for study purposes ideally, but 

one - two hourly samples are good 

Having information from the profile, 

it is suggested to start with three to four 

doses per day using the distribution 

schedule shown in the table. 

Beware: oral contraceptive pill leads 

to increased cortisol measurements 

and a graph was used to illustrate the 

remarkable affect the birth control pill 

has on the cortisol levels throughout the 

24 hour period 

There is a limit to how high the levels 

of cortisol you can achieve in the blood. 

Doubling doses (of 

hydrocortisone) does not 

double the blood level 

10mg=500 nmol/l 



This is because of binding proteins that 

get saturated very quickly when high 

doses are given, so that more and more 

of the dose gets lost in the urine. 

Prof Hindmarsh showed graphs 

illustrating how double dose and triple 

dose do NOT give longer coverage in 

time, but peaked higher. 

General illness: 

Level 1 

If you are unwell, temperature of +38C, 

Ambulance and Emergency Care 

Dr Quen Mok (Ambulance and Emergency Medicine Working Group) 

The JRCALC was formed to 

improve care in ambulances 

on their way to hospital.It is an 

advisory group from many backgrounds; 

they meet four times a year. 

The Panorama programmed illustrated 

that there seemed to be a “Post code 

lottery of ambulance care in UK”. 

JRCALC had a remit to develop, update 

and maintain UK ambulance service 

clinical and practical guidelines. The 

handbook is now 500 pages long and 

2013 was the last revision. 

In the paediatric section it covers: 

General, resuscitation, trauma, medical, 

drugs and CBRNE to produce effective, 

safe treatment by non-doctors on site. 

Paramedics have to work in difficult 

environments, with other hazards, 

limited drugs, and only 1% of calls 

and can take fluids, double your dose 

and take an extra DOUBLE dose at 4am 

(especially important for children). 

There is a natural peak of cortisol at 

this time and cortisol levels have been 

rising from midnight, and the night time 

cortisol dose will have run low, (even if 

double, as remember the dose does NOT 

last double the time, but peaks higher) so it 

is important to adhere to this, especially in 

illness to prevent low blood glucose levels. 

Level 2 

Vomiting: if oral hydrocortisone is not 

staying down, give IM hydrocortisone 

injection, then go to hospital. 

Don’t forget - if you’ve had an 

injection, it won’t last longer than tablets, 

so give the next dose, no longer than six 

hours later. 

It is the duty of the endocrinologist 

to set up emergency care plans for their 

patients, as this must be individualised ■ 

are for children that need emergency 

intervention. 

1968 Medicines Act set out that 

paramedics are allowed to give medicines. 

However, especially with children, getting 

the right dose is complicated and to 

avoid having to work out on site what the 

correct dose would be, the Handbook 

has done all the calculations and there 

is a ‘Page for Age’ so as to make it 

as straightforward as possible for the 

paramedics. 

Hydrocortisone is most often used for 

asthma and adrenal crisis. The biggest 

challenge, however, is persuading all the 

ambulance trusts to use this national 

resource – many trusts still prefer their 

local medical boards’ opinions – to the 

detriment of their patients. This MUST 

become a national conversation ■ 



Care in Accident and Emergency 

Dr Rebecca Salter (Imperial Healthcare) 

Dr Salter thought that if we could 

understand how the emergency 

department is set up, we can 

interact with it more effectively. 

1) Structure of an emergency 

department 

There are different models: general 

department, or a teaching hospital; 

there are some paediatric hospitals and 

depending on the size of the town, 

some hospitals are more hectic than 

others. 

In an A&E ward, children should have 

visual and auditory separation from 

adults, and there should be a children’s 

nurse. 

2) Staffing of an emergency 

department 

There is a nurse in charge of each 

shift, a staff nurse, some Sho/ 

STI-3 junior doctors - paediatric 

or orthopaedic, Registrar ST3- 

8 either paediatric or emergency 

medicine, Consultant paediatrician or 

emergency medicine. 

3) Process on arrival 

When should you go? Febrile illness, 

vomiting/diarrhoea 

1. Book in at reception - inform 

receptionist of your Emergency Care 

Letter (or Patient Care Card -adults) 


2. Triage - nurse will assess urgency 

of case. Depends on whether 

related to condition or not (if you 

can phone before arrival and preregister 

this can speed things up) 

3. You should then be urgently moved 

to assessment area and seen quickly 

4. You can be taken straight to 

paediatrics, registered there and 

treatment started, but it is always 

dependent on other cases in the 

department 

4) What you can expect to be 

done: this will depend on 

which condition you have 

• Initial observations 

• Bloods - urea and electrolytes, 

blood glucose, calcium, cortisol, 

17OHP (in CAH), gas, culture, 

play specialist - cold spray (local 

anaesthetic cream) 

• IM/IV Solu-Cortef if not already 

given 

• IV fluids 

• IV hydrocortisone infusion if blood 

sugar low, need a bolus of glucose 

• Fluid bolus if ‘shocked’ 

• Contact the endocrine team for 

advice 

• Contact your GP after attendance 

by letter 

5) What we (the hospital) 

can do to streamline the 

process: 

• Electronic flagging/special patient 

- keep the file updated 

• Direct access - some hospitals 

do this but it is not always best 

practice 

• If you have phoned ahead - prearrange 

room and appropriate 

equipment/drugs 

• Endocrine team to liaise with local 

specialist with up-to-date clinic letters 

• Provide local anaesthetic 

• Local emergency departments and 

specialist to liaise with endocrine 

team regarding acute presentations 

• Keep you informed of plans 

6) What you can do to help 

process: 

• Carry your emergency care plan 

• Carry recent clinic letter 

• If you can, get someone to phone 

ahead to your local A&E to warn 

them to expect you 

• Apply local anaesthetic for injections 

• Keep school informed of changes 

and check hydrocortisone is in date 

• Need to check local A&E has the 

clinic letter linked to A&E notes 

If A&E are not doing the right 

thing: 

Politely, but as forcefully as possible, 

ask to see the registrar or consultant, “I 

want to escalate this”. Point out that your 

paperwork shows that “this is an NHS 

directive”, or call for the site manager, or 

general manager. State: “I can see you are 

very busy, but my child is very seriously 

ill”. They need to act appropriately, 

quickly, and give information quickly. 

Extra Information: 

Efcortesol is oil based and it can generate 

an allergic reaction especially if you have 

eczema or asthma - better to use 

Solu-Cortef ■


25 

Research: Helping young people talk with 

doctors and nurses 

By Jennifer Downing & Prof. Peter Callery 

The COMMEND YOU study 

is to trying to find ways to 

help healthcare professionals, 

young people and parents (if present) 

communicate. We are starting to test 

the toolkit, developed with the help of 

young people with endocrine conditions, 

including pituitary conditions, and 

parents as well as doctors and nurses. 

The toolkit is called ‘Explain’ and is 

available on its own website 

www.explain.me.uk. Explain is 

designed for use at home as well as in 

clinics. The site has diagrams to help 

explain hypopituitarism and other 

endocrine conditions. There is also 

information about coming to clinic, 

keeping healthy and a glossary of 

terms. Much of the text is written as a 

response to questions and is followed 

by example questions patients may want 

to ask healthcare professionals. Health 

promotion messages and links to other 

information sites are also provided. 

A ‘Your Issues/Take Home Messages’ 

sheet can be downloaded to help young 

people tell doctors and nurses what they 

want to talk or ask about when they 

come to the clinic. 

Signing up creates your own private 

account to record take home messages 

and other notes for future reference. 

You can also keep a diary and update a 

personal growth chart with your height 

and weight. 

We are testing the Explain toolkit in 

the COMMEND YOU study. Previously 

we analysed recordings of consultations 

and interviews with young people, 

parents, doctors and nurses. We then 

developed the Explain toolkit with a 

group of young people and their parents. 

In this stage participants will test the 

Explain toolkit: 

• Before a consultation: the ‘Your 

Issues’ sheet will be sent to help young 

people prepare points and questions 

to talk about in clinic. We will also tell 

them about the website. After the clinic 

appointment patients and parents will 

watch back their consultation and talk 

to a researcher. They will be asked to 

discuss if and how the form and the 

website were used in preparation for 

the consultation. 

• In the consultation: consultations will 

be recorded and watched back with 

patients and their parents, including 

how the website and ‘Your Issues/ 

Take Home Messages’ sheet was used. 

• Post-consultation. Participants will 

receive a brief phone call two weeks 

after their consultation to ask if 

and how they have used any of the 

tools since the consultation. Any 

benefits, perceived improvements or 

outstanding communication needs will 

be discussed. 

• Patients in the COMMEND YOU 

study will also be offered a DVD 

recording of their consultation. We 

noticed that people could find it 

useful to watch the recording of their 

consultation during interviews. So 

we’re trying this out to see if it can be 

helpful as a reminder and to help plan 

how to talk with doctors and nurses. 

Everyone can see the toolkit and set up a 

private account at www.explain.me.uk 

Please let us know what you think either 

by submitting feedback through the site 

or directly to us at 

Jennifer.downing@manchester.ac.uk ■ 


26 Patients’ stories 

A rugby player’s pituitary journey 

My life was pretty simple. I was 

27, had a girlfriend of eight 

years, with a child called Lewis, 

(who I call my son after bringing him 

up since he was 18 months old), a son 

called Jordan aged four, a house and of 

course a job! I was working for Lloyds 

TSB Private Banking. My whole life was 

normal; get up, get the kids up, get off 

to work, get home, feed the kids, get the 

kids to bed (eventually) and spend an 

hour or so with Paula catching up on the 

day’s events. The other joy in my life was 

rugby! I am a HUGE Rugby Union fan 

and was playing for my local team. 

At the start of 2006 I started to 

feel tired; it was put down to the drag 

of everyday life and a busy work-life 

balance. With the tiredness, I had also 

developed these excruciating headaches; 

you would find me clutching my head in 


my arms and squeezing. The headaches 

were almost unbearable. But as we do, we 

struggle on, which I did. So my life at 

this point felt like hell, I was always tired, 

had no energy to enjoy my family, wanted 

to go to bed constantly, my headaches 

were now so painful, my eyesight had got 

worse. I had stopped playing rugby, and 

had lost my way. 

In 2008 I was rushed in to Frenchay 

Hospital, Bristol with a brain tumour 

the size of a lemon. After two lifesaving 

operations and six weeks of 

radiotherapy, I am lucky to say I am alive. 

Since June 2008, I have undergone many 

other tests following the discovery of 

a dysfunctioning pituitary gland. The 

results of these tests have confirmed 

that I have hypopituitarism, I am growth 

hormone deficient, I have diabetes 

insipidus, I need to take hydrocortisone 

(steroid which replaces the body’s natural 

production of cortisol) twice-a-day, 

and also I have a deficiency in the male 

hormone testosterone, which I replace 

daily. Hormones make us the people we 

are, and it is hard to come to terms with 

not being who you were. 

When dealing with all the changes 

to my mind and body, I found myself 

feeling alone and with lots of questions 

unanswered. I didn’t feel like I could 

continually ask my GP things, because 

the surgery didn’t seem like they 

understood things either. Then, one 

evening while searching the Internet for 

answers, I came across The Pituitary 

Foundation. It gave me an insight into all 

my conditions. I learnt more in that one 

evening than I had for the two months 

of consultant and GP meetings! I could 

take my time and read things through, 

print off information and give to my 

family to read, so they understood what 

was going on. 

Over the past two years The 

Foundation has helped me in my 

everyday living. For instance, helping me 

to secure a radar key, which has saved 

many an embarrassing moment when 

desperate for the toilet! The Foundation’s 

Emergency Hydrocortisone booklet 

has saved my life recently when I was 

involved in an accident. Because of this 

booklet, the ambulance crew were able 

to identify my need for an emergency 

hydrocortisone injection and prevented 

any further complications. I have phoned 

and spoken to Helpline operators, who 

have put my mind at rest and given me 

sound advice on matters I was unsure of. 

For me The Foundation has made 

me feel a part of something. A sense 

of belonging. I used to feel alone and 

confused about what was happening to 

me. But now I feel I know exactly what’s 

happening and how it’s affecting me 

and I can plan and organise my life so 

much better. To know there are other

Patients’ stories 

27 

people out there experiencing what 

I’m going through helps towards the 

self-healing. I can’t speak highly enough 

of The Foundation, and the support it 

offers because it has helped me get to 

where I am today and enjoy life again 

after a horrendous ordeal. Without The 

Foundation and the support I have 

received I believe I would not be back 

to work full time as a Bank Manager, be 

back playing my beloved rugby every 

Saturday and be the father I am to my 

three children. 

2014 update 

This update couldn’t come at a timelier 

manner to allow me to highlight the 

importance of our support network 

because, without all of them, I would not 

be here today. 

This update couldn’t have come at 

a better time for me personally either, 

to allow me to reflect on the past few 

years. Since my story was written, 

the positives are: we’ve moved to our 

perfect home in Martock, Somerset. 

Our three boys are now Lewis 15, 

Jordan eleven and Blake six; all three 

are growing up into amazing boys, who 

make me proud each and every day even 

when they are fighting! I am still here 

battling on every day now; I put that 

down as a positive to highlight that it is 

so very easy to become complacent. 

My struggles: 

Weight gain: I am the heaviest I have 

ever been; two flights of stairs leave me 

huffing and puffing. Now, I’m a relative 

fit 33 year old rugby player but with the 

recent increase of my hydrocortisone 

my weight has increased. Body shape: 

my body shape changes throughout the 

testosterone cycle 

My biggest struggle is my mind 

Every day reminded of what I’ve been 

through. Mood swings, depression 

and tiredness have all pulled me to the 

lowest points over the last six months, 

so much so, in my last endocrinologist 

appointment in July, I broke down and 

admitted I couldn’t cope any longer. 

The hamster wheel of life was moving 

too quickly for me to keep up. With my 

condition, I couldn’t determine if it was 

just normal to not feel like you could 

cope, because of our busy lives, or, if it 

was down to my hormones not being at 

the correct levels to be able to cope. Dr 

Bickerton was extremely supportive and 

as a result of blood tests has increased 

my Levothyroxine and hydrocortisone. A 

month on, I am happy to say I can now 

cope with the hamster wheel of life and 

the dark clouds that were inside my head 

have totally gone. I am now no longer 

the miserable husband or dad, but the 

happy full-of-life one again. The increase 

in my medication has improved our lives 

so much, it’s amazing. 

Keep talking 

If you take one thing away from reading 

my update, take this. What we go 

through never stops. We battle on, not 

knowing what we are battling, until we 

get the results of tests. Our bodies and 

minds control themselves and it’s out of 

our control sometimes. 

Keep talking; write a diary so you can 

see what worked well and what didn’t. 

Sometimes, by looking back you can 

see how far you’ve come. Use whatever 

support The Pituitary Foundation offers, 

that suits your needs. If it’s a buddy, a 

telephone call to the endocrinologist 

nurse, or printing off an information 

leaflet. Keep in contact with your 

endocrinologist and be honest. I broke 

down in my last review, instead of being 

the brave stubborn man I usually am, 

and by doing that, my hormones are to 

the level they should be and WHAT a 

surprise, I can cope again! 

I would like to thank The Pituitary 

Foundation and my wife Paula, who is 

my ROCK (she knows me better then 

I know myself), for all the fantastic 

support you have provided me and the 

people around me ■ 


28 Patients’ stories 

Hilary’s story 

I 

have idiopathic diabetes insipidus or DI. That is, I don’t 

have it as a result of something like a pituitary tumour or 

head injury, but it just happened out of the blue and the 

consultant can’t say what caused it. It is quite rare anyway 

but I think having it for no reason is rarer still. The word 

idiopathic comes from the Greek words ‘idios’ and ‘pathos’ 

meaning literally one’s own suffering, but I have my own way 

of remembering it. The doctor’s an idiot and the diagnosis 

is pathetic. Actually I don’t believe that at all, as getting a 

diagnosis was one of the best things that happened to me. 

Diabetes insipidus simply means ‘dilute urine’ and, when 

undiagnosed, you pass an awful lot of that and you drink vast 

amounts of whatever liquid is to hand, to try to assuage a 

terrible thirst. It is caused by a part of the posterior pituitary 

gland, which should normally secrete vasopressin (the 

antidiuretic hormone), stopping working. This should normally 

control the retention of water in the body. So much for the 

theory - in practice, undiagnosed DI is a bit of a nightmare. 

addicted to water 

It all started when I noticed I was needing to drink water at 

meal times. It got bad enough to go to the doctor who, quite 

naturally, sent me for tests for diabetes mellitus. Diabetes 

insipidus, despite the name, has nothing to do with diabetes 

mellitus. When the tests for what is commonly called just 

‘diabetes’ turned out normal, I was sent to see an endocrine 

consultant. He told me that ninety percent of the people he 

saw with my problem were addicted to water. He told me to try 

chewing gum. It took a whole year to get bad enough to have 

a water deprivation test to see if I had DI, by which time I was 

completely filling two large five gallon plastic containers with 

urine in less than twenty four hours and needing to drink and 

pee all the time. 

nightly ritual 

I have a story to illustrate what a problem drinking and peeing 

all the time is. My husband and I were running a small business 

and to save money we were living in a touring caravan. There 

was a double bed in the van with two bunk beds. It was my 

ritual every night to put a row of bottles of water by the double 

bed, so I could drink after I had been to the loo. The symptoms 

were non-stop, day and night. Because he was being woken 

every time I got up to go to the loo in the caravan’s portable 

toilet, my husband decided to sleep in one of the bunk beds. 

One night while turning in his bed, he pulled a muscle. He went 

to the doctor and was given anti-inflammatory drugs in spite of 

saying he had a problem with his stomach. Unfortunately, they 

gave him a stomach ulcer. He was drinking milk all the time to 

help the ulcer. We went to the seaside for a break and stayed in 

a B&B. In the middle of the night, my husband had run out of 

milk and I had run out of drinks. We got up, threw our clothes 

on, dashed downstairs and drove at speed to an all night garage. 

We nearly held up the bemused attendant as my husband 

demanded a large bottle of milk and I ordered the largest bottle 

of drink they had in the place. It is funny to recall it now, but 

were both in deadly earnest at the time! 

water deprivation test 

By the end I was feeling quite unwell. It is not life-threatening 

as long as you keep drinking, but it is very unpleasant. The 

water deprivation test for the diagnosis is horrible, as you 

cannot drink for several hours. I remember having ice cubes, 

but an endocrine nurse who I was at a recent test with has no 

recollection of that. They have to stop the test when you start 

getting dehydrated, which happens quite soon as you pee out 

all the liquid in your body. 

There is no way of curing a switched off hormone, but 

controlling it is easy. I just use a nasal spray of synthetic 

vasopressin twice a day and the symptoms go away. I have to 

make sure I am fully stocked with nasal spray, but diabetes 

insipidus is one of the conditions for which you do not have 

to pay prescription fees ■ 



29 

Lawrence’s story 

It all started in the year 2000. I had a 

good job, was very fit and enjoyed a lot 

of water sport. 

I lived in my own flat, worked hard 

and played hard without giving a thought 

to the welfare of my body. Looking 

back, I guess I was one of the lucky 

ones, as no matter what I ate or drank I 

always remained slim and healthy, or so it 

appeared. 

In October 2000 I noticed my vision 

was not as good as it was; it just looked 

misty and for a few days I put it down 

to fatigue and presumed it would get 

better. As it was certainly not getting 

any better, I went to the opticians. They 

had a good look and though my vision 

was by now quite poor they could not 

see a problem with my eyes and told 

me to “See how it goes.” I was not at all 

satisfied with that advice and asked for 

another appointment the following week, 

but unfortunately got the same response. 

I was really quite worried, so I went to 

see my doctor. He just said I was working 

too hard and should go to the gym! I 

then asked to see a specialist and was 

referred to the local hospital. 

MRI scan 

When I saw the consultant, after a full 

eye examination and despite my poor 

vision, he also told me that he could 

not see a problem, and that I should 

therefore have a second appointment 

to see him in a month. By this point I 

could not drive, as I could not see well 

enough and to again be told that there 

was no answer to my difficulties was 

very alarming. My mother then made an 

appointment for me at a private hospital 

in Colchester. When I saw this consultant 

(although I could not see him!) he felt 

I should have immediate tests and an 

MRI scan. I was by now feeling very 

unwell and as a result of my MRI scan, 

was admitted promptly to Oldchurch 

Hospital in Romford. 

When in hospital I was given 

medication that helped me get some 

of my vision back. It was such a relief 

but I had no idea what lay ahead. I had 

been in hospital for some time having 

tests, but still with no idea what could be 

wrong – until the day came, when I met 

a man who pulled my bed curtain round 

and said he wanted to talk to me. He 

asked if I knew what was wrong with 

me. I said I had no idea. I was a very laidback 

27 year old, until I found out what 

was wrong. “You have a brain tumour” 

he said. He explained this was what was 

causing the problems with my vision and 

what they were going to do (he was, in 

fact, my surgeon). I asked “What are my 

chances of coming through this?” As his 

description was quite unpleasant, all I 

could remember from that point on were 

the words “50/50”. He did say other 

things but they all seemed insignificant 

after that. 

being grateful 

It seemed to me that my life had come 

as close to ending as flipping a coin. 

‘50/50’ resonated in my head a lot, but it 

was made so much easier by the constant 

stream of visitors I had, and cards, even 

from my customers (I was a very happy 

Lawrence after 

Lawrence before 

Chrysler Jeep salesman). I was thankful 

that I had had a great life. Being grateful 

for that kept me going and I started to 

think that if my time had come, then I 

had had a great time being here. 

After surgery I did not feel able to 

speak or move but could communicate 

by wiggling my feet. Anyway, I have just 

realised this is going on a bit so will get 

on to the bits you are probably more 

wanting to read. I just wanted to tell you 

how I got to this next part! 

In my mother’s words, “You just 

ballooned in front of us”, and I did. I 

went in to hospital a size 28” waist and 

after surgery I was getting bigger and 

bigger. Two weeks later, I came home 


30 Patients’ stories 

to stay at my mother’s. I had been in 

hospital for a month. I could hardly walk 

and used two sticks. My pituitary gland 

had been removed during surgery and 

I now had a number of medications 

to take, including steroids. I felt, and 

looked, unrecognisable to myself. I had 

to buy a complete new wardrobe of XL 

clothes and 42” waist jeans AND new 

shoes, as even my feet had grown! I felt 

enormous but just thought I would lose 

weight and get back to my old self. 

slow but gradual progress 

After three months I returned to my 

own home having made slow but gradual 

progress. Over the next ten years, I tried 

many ways to lose weight but nothing 

worked for me. I clearly remember going 

to the doctor at 17 stone pleading for 

help. I knew there MUST be a way. He 

said, and I remember it so vividly, “IT’S 

UNLIKELY YOU WILL BE ABLE TO 

LOSE WEIGHT, BUT IF YOU ARE 

CAREFUL YOU CAN PROBABLY 

MAINTAIN IT.” ‘Maintain it,’ I thought, 

‘I don’t want to maintain 17 stone.’ I used 

to love to run but now it hurt to walk. 

I felt I ate healthily but generally I was 

extremely unhappy. I was single (I’d had a 

long-term girlfriend) and found it hard to 

hold down a job. I would have been very 

happy, then, if in fact I had not made it 

through surgery. I could no longer do 

any of the hobbies I had enjoyed before 

and thought “What’s the point?” 

constanty tired 

I plodded on. A few highs, a lot of lows. 

I had four TIAs over a short period 

and then, after collapsing and a week in 

hospital, I was told I had Type 2 diabetes. 

My sleep was awful, I was constantly 

tired, and that’s how it went on. 

My mother then discovered the Raw 

Food Coach, Karen Knowler and we 

went to one of her raw food workshops. 

I really enjoyed the food she made, 

but the turning point was that she lent 

me a DVD about some people in the 

USA who went raw and reversed their 

diabetes; it was called ‘Raw for Thirty 

Days’. Since my illness, I had thought 

that if I had enough money I would go 

to a health retreat and stay there until I 

felt well again or at least more alive. I was 

up one night researching such retreats, 

in case I won the lottery, and found 

one that had recently opened, offering 

really good deals. It later came up in 

conversations with my family and it was 

agreed that I should go. 

I was there for three weeks, mainly 

juicing and eating plant based food. It 

was a very simple place but it changed, 

if not SAVED, my life. We walked, 

rebounded and drank lots of juice, with 

the addition of plant-based foods. Also, I 

had been suffering from a skin condition, 

which I had been on antibiotics for 

months for. While I was there my 

skin totally cleared up and I stopped 

my antibiotic medication. I checked 

my blood sugars frequently and they 

became, and remain, very stable, which 

has allowed me to change my diabetic 

medication. 

running again 

One evening, I went for a walk. I was 

reminiscing to myself about how much 

I used to like to run and wondered if 

I could do it again, as I felt so well. I 

broke into a jog and was smiling from 

ear-to-ear. Then I broke into a full-blown 

run, almost a sprint. Being big, I felt 

like a jumbo jet taking off but was also 

ecstatic that I had run again. I went into 

the house and managed to puff out the 

words that I had just been running. I 

sat for a moment with the other guests 

and then got up and did it again. Just to 

be able to run again was amazing, even 

though it felt somewhat unnatural! 

After three weeks, at my last weigh 

in, I had lost exactly a stone. I was now 

16 stone and absolutely overjoyed. I 

had found a way. As soon as I got 

home, I put my microwave on EBay 

and replaced it with a juicer. I juiced 

and made what I called ‘Super Salads’ all 

the time. I bought my own rebounder 

(mini-trampoline). My skin looked 

amazing and my blood sugars were still 

very stable. I did not deny myself any 

particular foods, but mostly drank juice 

and ate salads. I carried on...and two 

years later I had gone from a 38” to a 

34” (now 32”) waist and was able to finish 

a 10K run in Greenwich Park dressed as 

Father Christmas in aid of The Pituitary 

Foundation. It was a massive landmark for 

me. In the same year, I also went wakeboarding 

which, writing about it now, I 

still can’t quite believe it. I never thought 

I would be able to do any type of water 

sports again. I also went snow-boarding 

(on a dry ski-slope) and it felt amazing to 

do some of the things I used to enjoy. 

two years on 

Another two years on and I still felt 

great. I was unfortunately in and out of 

work, partly down to redundancies and 

partly down to just totally the wrong jobs 

for me, but I would take almost anything 

as I so wanted to work. Whether in paid 

or voluntary work – I usually took a 

green juice for lunch! 

talk on juices 

For over a year I have been working 

part-time whilst seeking full-time work. 

People have noticed the ongoing positive 

changes in me and asked me to make 

them juices also. This has happened 

more and more and led to me giving a 

talk on juices at my local hospital and 

also at a complimentary healthcare 

centre. As well as these, I was even asked 

by a local businessman to give three juice 

demonstrations at his companies. 

the juice guy 

I still have occasional check-ups with 

my endocrinologist but juicing has 

had a profoundly beneficial effect on 

my condition and thereby positively 

influenced the amount of medications 

I need to take. People have referred to 

me as ‘The Juice Guy’ and I cannot think 

of a better title, especially as my friends 

and family have seen the transformation 

happen in front of them since I became 

a Juicerholic! 

Looking back, if I had not gone 

through all that I would probably still be 

selling prestige cars which at the time I 

thought was great, but I would far rather 

be doing something positive and healthy 

with a thought for the wellbeing of 

myself and others ■ 



31 

Michael’s story 

A photo of me enjoying a driving day at the Severn Valley Railway back in the summer. My instructor is on my left. 

In late 2012, I became aware that I 

had developed blurred vision in my 

left eye. I attended my opticians in 

January and was alarmed to discover that I 

could not read the top letter on the vision 

chart with my left eye, even with the aid of 

the various corrective lenses provided by 

my optician. He referred me immediately 

to Queen Mary’s Hospital Sidcup, who 

carried out various tests and ranged a 

further appointment for me in March. 

Towards the end of February, I 

became concerned that my condition 

was worsening and attended A&E at 

the Western Eye Hospital in London 

on 27 February. Again, a number of 

tests were carried out and a provisional 

diagnosis of non-arteritic ischaemic optic 

neuropathy was reached. I attended a 

follow-up appointment on 19 April when 

this diagnosis was confirmed. A further 

appointment to test visual fields was 

arranged for 21 June. 

Early in June, vision in my right eye 

began to deteriorate rapidly; I therefore 

attended Moorefield’s A&E on 5 June. 

Moorefield’s conducted a further series 

of tests and offered me an appointment 

with a neuro-ophthalmologist on 12 

June, with the option of re-presenting at 

A&E if I noticed a further decline in my 

right eye vision (by this time my left eye 

vision was non-existent). My right eye 

vision was declining on a day-to-day basis 

by now and so I duly presented again at 

Moorefield’s A&E on 8 June. Again, a 

variety of tests were carried out and the 

thinking was that (rather unluckily!) I had 

suffered another non-arteritic ischaemic 

optic neuropathy, this time in my right 

eye. I was about to be discharged, but 

after speaking to the consultant, the duty 

doctor decided to send me for a brain 

scan. 

This revealed the presence of a large 

(egg-sized) tumour on my pituitary gland, 

which was impinging on my optic nerve 

and causing the reduction in sight. It was 

successfully removed by Mr Barazi and 

team at Kings College Hospital shortly 

afterwards and I am pleased to say that 

my vision in both eyes has returned to 

around the level it was this time last 

year, i.e. before I became aware that 

there was a problem. The consultant 

ophthalmologist at Kings has described 

this recovery as ‘remarkable’. 

No criticism of any individuals or 

institutions is intended here, but the key 

point is the timing of the brain scan. It 

would clearly have helped if this had 

been provided at an earlier stage, and 

there may be a lesson here for others 

(both patients and physicians) who find 

themselves faced with a similar situation. 

I’m delighted to report that I’ve had no 

further problems, and have responded 

well to ongoing endocrine treatment. 

Post script: At my most recent 

ophthalmology appointment at King’s 

they told me that there is irreversible 

damage to the retina in my left eye. It 

is probable that this would not have 

occurred had the tumour been diagnosed 

earlier. The practical effect of this is that 

should I decide to have lens replacement 

surgery at a later date, any improvement 

in my left eye would only be marginal. 

But I would stress that, given all the 

circumstances, I am extremely happy 

with the outcome ■ 


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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. 

© 2014 The Pituitary Foundation 

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• Registered charity number 1058968 

• Registered address: 86 Colston Street, Bristol, BS1 5BB 

The Pituitary Foundation 

86-88 Colston Street, Bristol, BS1 5BB 

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Editor of Pituitary Life: Pat McBride 

Working to support pituitary patients 

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