Issue 35

Spring 2017 edition
Issue No: 35
Weight
issues and
nutritional
advice
Emergency
injection
needles and
accessories
New: your
feedback section
Our national survey
feedback
Patients stories
– a baby, a teen
and an adult
Socialising with
an invisible illness
Pituitary life | autumn 2012
www.pituitary.org.uk

2
news News
Membership notice
Contents
As you may know, Membership
fees have remained constant
here at The Foundation for a
number of years. We did make some
changes to our rates in 2012, and spent a
number of years consequently moving
some of you over to an increased rate.
This was predominantly for those
paying the concessionary rate and
was due to the fact it was not covering
costs at that time.
Costs to our charity increase each year
and we have to ensure that our membership
scheme is comfortably covering these
increases. As part of our 2016 survey, we
consulted with our valued members around
our current membership scheme.
95% of our members consider the
current rate to be good value for money.
87% would be happy to see occasional
changes made to rates.
We wanted to notify you as soon
as possible that this year we will be
increasing our rates. More information
will follow with details of what the new
rates will be and how current members
can amend their payments. Don’t worry,
you don’t need to do anything for now.
We will keep you updated as soon as the
changes are made.
In return, there will be some additional
benefits for our members. We have
looked at all the statistics, comments and
suggestions relating to membership from
our survey and all this will continue to
feed into our work to provide the best
scheme possible for our members.
Thank you for your support and
understanding.
Please contact emily.mullen@pituitary.
org.uk if you have any questions ■
News 2-8
Local support group news 9
Professional articles 10-13
Patients’ stories 14-17
Raising awareness 18-23
Wall of thanks 19
2016 Christmas Raffle
We are delighted to announce that our Christmas
raffle raised £5,770 so a huge thank you to everyone
who took part. If you missed out this time you will
still have a chance to win some great prizes as tickets for the
summer raffle will be on sale from the end of March. The
winners of the 2016 Christmas Raffle are as follows:
Christmas raffle 1
1st prize (£300) – Pauline Rossiter
2nd prize (£200) – Sheila Pollard
3rd prize (£50) – John MacNamara
Christmas raffle 2
1st prize (£300) – Pamela Holmes
2nd prize (£200) – Stuart Squibb
3rd prize (£50 – donated back to us!)
– Catherine Poulton ■
General
Meeting
Notice
The Pituitary Foundation’s 2017
General Meeting of Members
will be held on Friday, 28
April 2017 starting at 10am in the
Doubletree by Hilton Hotel, Redcliffe
Way, Bristol, BS1 6NJ.
The Meeting Agenda and 2015/16
Annual Report and Accounts will be
available soon on our website. If you
would like to attend the meeting, please
contact Sian Pitman, Events and Patient
Services Administrator on sian@
pituitary.org.uk or 0117 370 1310 by
Tuesday, 11th April 2017 ■
Pituitary life | spring 2017

news News
3
Masters research: Understanding the
needs of children with pituitary conditions –
looking for participants
Jade Walsh Masters student,
Plymouth University
Some of you reading this may
remember a previous article
describing a PHD project
aiming to research children’s
experiences of pituitary conditions.
We are now restarting this research as
a series of Master’s degree projects.
In this first one we are interested in
hearing about what it’s like to have a
pituitary condition as a young person,
issues about decision-making in relation
to medical care, and the transition from
paediatric to adult care.
We are looking for some willing
volunteers aged 10-21 who would be
interested in participating in this research.
The study will involve an interview
approximately 1 hour long that will be
conducted in a private, safe chat room
online with Jade. These interviews will
take place during the month of February.
If you decide to take part in the study we
will offer you a £10 Amazon voucher for
your time.
We hope that by conducting this
research we will gain an insight into the
difficulties that can occur when living
with a pituitary condition, help health
professionals to better understand their
patient’s needs and ultimately assist with
guiding intervention development.
The research has been approved by the
University of Plymouth and is supported
by the Pituitary Foundation.
If you or your child would be interested
in taking part please feel free to contact
me for more information at jade.walsh@
students.plymouth.ac.uk ■
Anon wrote in
response to the ‘triple
article’ feature in the last
issue: A number of quotes stood out for
me: “However you are the one who is responsible
for getting to grips with your condition” (the
patient); “Hormone replacement therapy …
may require some finessing” (the psychologist);
“You should check your doses and your (test)
results” (the endocrinologist). These raise
a lot of issues.
The patient’s statement is one I agree
with, in fact I tend to say that I’m managing
my treatment. But it’s very difficult.
Finessing my hormone therapy is
something I would dearly like to do
but the problem is working out what
medication has which effects. As we all
know, pituitary conditions are many and
We welcome your comments from previous magazine articles. If you
do wish to share these, please email them to pat@pituitary.org.uk
varied and affect us all in completely
individual ways. Nothing speaks to the
need for ‘personalised medicine’ as much
these conditions do. The problem is that
our hormone systems are so complex and
interconnected that you have to be an
expert in complicated puzzles or a chess
grand master to hold it in your head.
Endocrinologists understand the broad
structure but that’s just the generalised
model and very few of us will fit that
exactly. So being able to ‘finesse’ our
medication, to fit the way our bodies and
minds respond to it, is a great idea but
hard to do on your own.
A while ago I read an article by
someone describing how she now split
her hydrocortisone tablets into smaller
fractions than the doctors suggest, in
order to fit better into her body’s daily
rhythms. That must take some time to
work out by experimenting and keeping
a record of the results. Again, I suspect
few of us have the focus and patience
to do that. If we’re taking three or more
medications in a day/week/month, it’s
even more complicated.
The same goes for checking doses
and test results. The endocrinologists try
to get our levels within their guideline
levels but have no idea what our personal
ideal levels should be. It doesn’t help the
individual patient if, as in my case, the
results the hospital uses different units to
those I can find on the Internet. I don’t
have a ready reckoner to figure out where
my results fit in the picture, in order to
know how to vary my doses effectively.
The ideal solution would be for us to
have hormone pumps, as insulin-dependent
diabetics can get, which would deliver the
correct dose on demand as our bodies need
them. These may come but are some way
off in the future. It would require a long
study of many different pituitary conditions
- not only of the hormone levels, but also
of how the patient experienced them in
terms of fatigue, mood swings and sense of
wellbeing. Let’s hope someone is working
on the idea ■
Pituitary Life | spring 2017

4 News
Brighstone Tree festival
“I have just been viewing your
wonderful new website. I spoke with
you many years ago when I did not
know which way to turn with my
daughter Rachel but who would have
thought all these years later she would be
featuring on your web page.”
“Just a note to thank you for the
current copy of Pituitary Life. I think
the current copy layout and text
presentation is excellent, and I wish to
congratulate the production team and
particularly the editor.”
We’d like to say a massive
thank you to our Volunteer
Campaigner, and member
of The Solent Support Group, Chloe
Camoccio. Chloe designed and
created this wonderful Christmas tree
as part of the Brighstone Tree Festival,
which ran during 8 -12 December. The
tree is decorated with our Foundation
colours and hand-cut quotes that
Chloe has collected from patients.
Well done Chloe!
Here are just a few of the quotes that
patients sent to Chloe for her tree:
“I really like the new website
and quality of the writing.
To me there seems to be much
more detail.” Phil, patient.
“The Pituitary Foundation gave me
all the information my consultant
forgot to give me in a really easy to
understand format; and answers all my
questions however strange; and makes me
understand I’m not alone.” Patient.
“Made me realise I am
NOT alone.”
Pituitary life | spring 2017

News
5
Initial findings from The Pituitary
Foundation 2016 Survey
More than 1,000 people took
part in our survey last year.
The following information
is based on the findings from the 500
people who completed the survey
online. A full report will be made
available at a later date as analysis
is currently underway by research
students at Plymouth University who
are volunteers.
The results give a clear indication of
the impact of pituitary conditions and
the array of symptoms that are associated
with each condition. The findings show
the impact on health, employment,
personal relationships, wellbeing and dayto-day
life.
‘People do not understand the
implications of pituitary problems,
it is the old tale - you never know
what your hormones do until they
stop working. Hard to explain such
things and make people realise that
you are on treatment for life and
these things don’t get better.’
From the results it is clear to see how we
can strive to improve our current services
and how we can continue to campaign
for change to see people affected by a
pituitary condition better able to access
the healthcare they deserve. There is
still a huge lack of understanding and
knowledge around pituitary conditions
and the impact on those with one of the
many rare conditions.
General
The majority of respondents were from
the UK but some were from further afield.
Two thirds of those that took part (67%)
were female. 14% of respondents were
under 35. Nearly half (48%) told us they
were between 36 and 55, and 38% over 56.
94% told us they have or have had
a pituitary condition. 4% told us that a
relative or friend has a condition and 2%
told us they may have a pituitary condition.
Health (conditions and
symptoms)
45% of people told us that they had
hypopituitarism. 19% diabetes insipidus,
19% a non-functioning tumour, 15%
prolactinoma, 13% acromegaly, 11%
Cushing’s, 6.5% craniopharyngioma,
6% hypogonadism and 1.8% Sheehan’s
syndrome. Respondents were able to
select more than one option.
‘It’s difficult to describe the mood
swings, visual changes, impact on
my appearance and the generalised
pain.’
‘The symptoms were invisible,
people would say “pull yourself
together” or “you are lazy”. This was
due to no motivation and extreme
fatigue, also depression which was
difficult to discuss with anyone.’
The following chart shows the percentage of people experiencing each symptom:
Fatigue 87%
Weight gain 60%
Difficulty concentrating 55%
Anxiety or depression 53%
Low libido 50%
Mood swings 49%
Headaches 46%
Generally unwell 41%
Changes in appearance 40%
Difficulty recovering from minor illnesses 35%
Dizzy spells 33%
Pain 31%
Changes in behaviour 30%
Pituitary life | spring 2017

6
News
‘If you say you get really tired
no-one really understands. It’s not
a normal tiredness it’s one that’s
impossible to fight against.’
Many of the respondents have other
medical conditions as well as their
pituitary condition, such as diabetes
mellitus, arthritis, infertility, fibromyalgia
and depression. 38% report that they
have developed other illnesses as a result
of their pituitary condition.
Healthcare professionals
We asked people to rate the service received by health care professionals:
Very good / good average Poor / very poor
GP 57% 21% 22%
Practice nurse 63% 24% 13%
Endocrinologist 73% 17% 10%
Neurosurgeon 89% 5% 5%
Radiologist 86% 10% 4%
Endocrine nurse 86% 10% 5%
‘Nobody is interested in a nonevisible
illness so I never get to
explain anything. I am considered
lazy, an over eater and moody.’
Diagnosis
6% of people told us they were
diagnosed less than six months ago. 14%
were diagnosed between six months and
two years ago. 16% between two and
five years ago and 63% over five years
ago. On average, people waited between
four and five years for a diagnosis to be
reached.
57% of people were diagnosed after
one to six visits to their GP. 20% were
diagnosed after between seven and 15
visits and for 22%, it took over 16 visits.
Treatment
When asked about the stage of their
treatment, 2.9% said they had just
been diagnosed but not yet received
any treatment. 11% were undergoing
treatment. 64% had completed treatment
and were on long-term medication. 5%
had completed treatment and no longer
required any medication.
For those that had surgery, 77% had
transsphenoidal surgery and 17% had a
craniotomy.
33% of the 65% who completed the
question around treatment type received
radiotherapy.
7.7% of people see their GP or
endocrinologist once a month. 17.6%
four times a year, 40% twice a year, 29%
once a year and 6% less frequently.
‘People make assumptions based
on appearance and do not believe
you are ill. Fatigue is debilitating
but is invisible. No-one has heard
of Cushing’s disease. People try to
normalise and generalise e.g. saying
“that happens to me” when you try
to explain cognitive problems. There
is very little good literature. Even
GPs do not understand it and do
not have the time to research.’
Only 38% of GPs or endocrine nurses
referred respondents onto The Pituitary
Foundation or provided them with one
of our booklets. 62% did not.
We asked people their opinion on the
information they received:
l 66% said they were not told enough
about their condition when first
diagnosed
l 54% reported that they were not told
enough about their condition before
treatment
l 53% reported they were not told
enough about their condition after
their treatment
l 64% told us they did not have enough
written information about their
condition
l 65% told us they find it frustrating that
their questions cannot be answered by
their endocrinologist/GP
l 51% told us they needed someone to
help them understand the information
they found on the internet
l 84% told us they used information from
The Pituitary Foundation the help them
ask questions of their healthcare team
‘It is difficult because it is not
a condition that can be seen.
Consultants even think that because
they have cured the Cushing’s I
am fine, but they don’t look at me
holistically and at the psychological
effects.’
We asked participants what they
thought would make a real difference
to their health care:
l 87% told us a better informed GP
l 83% told us more information around
different treatment options
l 92% told us early signposting to The
Pituitary Foundation
l A staggering 94% think that more
information on the impact of pituitary
on mental health and what support is
currently available.
‘Most people think that after the
tumour is removed you are well.
People look at me and say how well
I look, and don’t seem to be able to
grasp that at the moment I can’t lead
a normal life. I feel I am judged.”
Support
33% told us that they receive help from
a carer.
34% have a support group within a 30
minute drive and 47% within a 1 hour
drive. Of those that attend they find it
helpful for information (81%), meeting
like-minded people (75%), learning
about different treatment options (67%),
emotional support (61%), and selfmanagement
(61%).
Pituitary Life | spring 2017

News
7
The impact of having a pituitary condition
We asked our supporters - how do you feel about:
Very satisfied /
satisfied
Not satisfied /
most dissatisfied
Your ability to get around? 71% 29%
The quality of your sleep? 43% 57%
Yourself generally? 38% 61%
Your sex life? 32% 68%
Your personal relationships? 63% 37%
Emotional support from friends /
68% 32%
relatives?
Emotional support from healthcare
professionals?
44% 56%
Support from The Pituitary Foundation? 91% 9%
‘A lot of people think that
hormones are all about puberty,
having babies and periods. They
don’t realise that hormone problems
can be life threatening.’
We asked about the impact a pituitary
condition can have:
l 55% told us their pituitary condition
has resulted in stopped or reduced paid
work
‘Extreme fatigue and general
reduction in ability to concentrate
has made me lose confidence at work
and has limited my opportunities as
it is a ‘hidden’ disability.’
l 28% said their illness had resulted in
stopped or reduced education
l 62% told us they experienced reduced
social contact
‘The fatigue and associated
symptoms have been debilitating.
I can no longer work and I have
lost the vast majority of my friends
because I can’t go out socialising.’
l 58% told us their pituitary condition
had resulted in reduced fertility or
infertility
l 75% said they had experienced changes
to their appearance
l 75% told us they had experienced anxiety
or depression as a result of their illness
l 60% said they experience pain or
discomfort as a result of their illness
l 74% told us they have extreme fatigue
that limits their activities
l 77% told us they have an increase in
susceptibilities to fluctuations of mood
The Pituitary Foundation helps people
access the correct information about
their illness, it aims to give them a sense
of belonging, it helps them to meet likeminded
people, to access the correct
healthcare professionals, to learn about
different treatment options, and to selfmanage
their symptoms.
The wealth of information, opinions
and experiences we have recorded
will help The Pituitary Foundation to
continue supporting patients in the best
way possible. It will also help inform
our campaigns work and help us raise
awareness in order for pituitary patients
to receive the best care possible.
A very big thank you to everyone
who took the time to participate in this
survey ■
Pituitary National
Conference 2017
We are starting to plan for the next National
Pituitary Conference which we are hoping to
hold on a Saturday during November this year
(depending on venue availability). The location and
exact date will be announced in March or April so do
keep an eye on the website.
All booking information will also be included in the
next Pituitary Life (summer edition in June). The event is
always very popular so
we recommend booking
early. We will have a whole
host of medical experts
running workshops covering topics
of interest to patients and their families. Our Conference
is also an excellent opportunity to meet others and share
experiences ■
Pituitary Life | spring 2017

Pituitary eye test A5_v2.indd 1 19/08/2016 08:48
8
news News
Campaigns and policy work update
The Foundation takes part in regular policy work, and we campaign on key
issues facing pituitary patients to improve care and services.
• Summary of our October Awareness Month
2016 optician awareness campaign
Awareness Month ensured more
opticians are now aware of pituitary
tumours than previously, which
will help to prompt earlier diagnosis for
some pituitary patients. Participants
raised a great deal of of awareness to local
opticians through distributing our leaflets,
and The Foundation contacted optometry
organisations, optician headquarters, eye
CAN
hospitals and retinal screening centres.
Participants were also involved in giving
awareness talks, running awareness stands, and
holding ‘Great Pituitary Bake-offs’. Overall, we
had a great response to this campaign and we saw a
24% increase in people involved compared with Awareness Month
in 2015. When the campaign was launched there was a terrific
response to our first post on Facebook which reached over 7,000
people. A huge thank you to all our participants for their hard work!
An exciting development occurred at the end of Awareness
Month as we were contacted by one of our members, Derick
Watson, whose son, Dominic, works as a consultant for Myers La
Roche, a company that provides marketing support and practice
sales for opticians and optometrists. They are the largest business
of this type in the UK and have contact with all independent
opticians. Dominic has very kindly offered to support us by
sending out our optician awareness leaflet in their January circular,
which will be sent out to 2750. The company will also help us
raise awareness through their communications and social media
channels. An enormous thank you to Myers La Roche from all
of us here at The Pituitary Foundation - this will raise enormous
amounts of awareness!
New campaigns for 2017 -
We are currently in the final stages of planning our three brand
new campaigns for 2017. These will be announced very shortly
and launched in March, June and October this year. We will be
very keen to hear from anyone who would like to get involved.
You can read all about what we have achieved in the past on
DID
60
YOU
45
30
KNOW
26
VISUAL
21
FIELD TESTS
16
DETECT
12
PITUITARY TUMOURS?
our campaign archive webpage. Some useful resources from
past campaigns are still available and still being used to spread
awareness, e.g. raising awareness about adrenal
crisis and diabetes insipidus.
l The Society for Endocrinology and The
Pituitary Foundation released a joint position
statement to welcome the news that the NHS
is continuing to routinely fund pegvisomant
and pasireotide. In the lead up to this decision,
and all the discussions surround PrEP (Pre-
Exposure Prophylaxis), we took part in some
co-ordinated campaign activity run by Terrence
Higgin’s Trust. It was a display of unity among
individuals, eight charities, and MPs. We used the
#PatientsTogether for our coordinated social
media activity, and an open letter was printed in
The Times.
l We have been continuing to speak out for pituitary patients
in our role on the Clinical Reference Group in England,
and as a member of the Welsh Cross Party Group for rare
diseases, as well as through the other rare disease networks we
are involved with.
l We were asked to give a presentation at an Access to
Medicines event (run by Rare Disease UK and Genetic
Alliance) to talk about our experiences in taking part in NHS
medication assessment processes. We were asked as it is rare for
a patient organisation to have taken part in both the Welsh and
Scottish assessment system and they were keen for our feedback.
l We attended a focus group with Genetic Alliance and other
patient organisations to contribute to the production of the
Welsh patient charter for rare disease patients. We
were able to put forward the common concerns and problems
faced by those undergoing diagnosis and treatment.
l We now know last years’ Adrenal Crisis e-Learning module
campaign resulted in increased numbers of paramedics
increasing their knowledge of adrenal crisis. As a result of
the campaign, nine ambulance trust/training organisations
are now utilising our training module within their training
programmes. Paramedics across the UK contacted us to ask
to take the module as part of their own personal development,
and 72 helped us distribute flyers ■
For any queries relating to campaigns and policy work please call 0117 370 1316 or email campaigns@pituitary.org.uk and Rosa,
our Campaigns, Volunteers & Events Manager, will be happy to help. To find out more, see how you can get involved, or for details
about becoming a Volunteer Campaigner you can also visit the campaigns section of our website. Just click on the ‘Get Involved’ tab ■
Pituitary life | spring 2017

Local Support Group News
9
For information about our groups’
meetings and to see if a group
meets near you, please see our
website, contact 0117 370 1320 or
email helpline@pituitary.org.uk
Younger People and Parents’
Support Group
Alice and Richard attended the 2016
BSPED in November to run an
awareness stand for The Foundation.
BSPED is a medical conference about
paediatric endocrinology. There was
plenty of interest from healthcare
professionals in our awareness stand,
especially of our new publications for
young people and in Richard’s patient
story. A big thanks to Alice and Richard
for attending. If any younger patients
and parents want to get involved
with this support group or to speak
to someone about the challenges of
education, health care, transition, and
youth specific difficulties, just email
aljackman@hotmail.co.uk or contact
The Foundation who can pass on
Alice’s number.
Ipswich and Suffolk Support Group
This group meets to share experiences
and to welcome guest speakers. Recently
they have been working closely with
their local ambulance service to improve
hydrocortisone awareness. The group also
work hard to promote and participate in
The Foundation’s campaigns. Rosa from
The Foundation attended their latest
meeting and gave a presentation about
The Pituitary Foundation’s services and
current activities. If you live nearby do
come along and meet this friendly group,
which is run by Specialist Endocrine
Nurse, Kelly Pendle, and Chair, John Day.
Meetings are held in Ipswich Hospital.
Email pitips@btinternet.com or phone
John Day on 01473 730946.
Exeter, Plymouth, Torbay & Truro
Support Group
This group has grown to 97 members
and rotates its meetings between four
hospital endocrine centres, with each
usually hosting two group meetings
per annum. All meetings are open to
anyone with pituitary problems and
their partners and family. The meetings
are held on weekdays, at 6pm which
the group find is a good time to invite
the doctors along to speak after work.
Meetings last for a couple of hours.
Recently, Sian and Rosa from The
Foundation went to visit the group at
their meeting in Exeter, Endocrinologist
Dr Antonia Brooke also spoke. Mike
Luxton is the group’s area co-ordinator.
To join this group simply make contact
with him at mike.pituitarylsg@gmail.
com or phone 01872 501375.
Oxford Support Group
This group meets to support pituitary
patients, and receives excellent support
from all the staff at the Oxford Centre
for Diabetes, Endocrinology and
Metabolism, who often join them for
meetings. The group last met in late
November and Sammy from The
Foundation attended to give a talk about
fatigue management in relation to The
Foundation’s new publication about
fatigue. For more group information,
email helpline@pituitary.org.uk or
contact Mark, the co-ordinator, on
01235 200056 ■
In memorial
It is with great sadness we
heard that Judith Kershaw,
former Area Coordinator for
Doncaster Support Group,
had passed away on 15
October 2016.
Judith said that her diabetes
insipidus appeared when she was about
10 years old. She was always given a pint
bottle of water to take to bed. Her thirst
was ever growing but everybody just put
it down to being hot and that you
didn’t go to doctors in those
days unless you couldn’t walk.
Her great commitment
and support to other
pituitary patients in
Doncaster won’t be forgotten,
nor her wicked sense of humour.
We offer our sincerest sympathy to her
beloved husband, Bob, and her family ■
Pituitary life | spring 2017

10 Professional articles
New Year, New You - Made Simple
Claire Johnson S.N.H.S. Dip. (Nutrition) S.N.H.S. Dip. (Advanced Nutrition)
So here we are again, that time
of the year to reflect on what we
have achieved and what we didn’t
achieve! Then there is the setting of
New Year’s resolutions – what we want
to change, achieve, stop, do.......the list
goes on! We end up overwhelmed by
what we should be doing and what’s
right. Instead, we should be thinking
about what we want to do.
January is a great month to start afresh
but we must think about the year ahead.
It’s good to have ideas and set goals but
we need to maintain these throughout
the year and if you’re like me, that’s the
hardest part! January can be a very dull
month with dark mornings and nights
and not much sunlight which can make us
feel low. So, it’s no wonder by the end of
January, we may have only achieved one
of our intentions, if any, and then start
thinking is it worth it or this is too hard
and I can’t be bothered!
So, in the last few years I have
discovered a ‘New Year, New
Me’ plan!
I start with reflection – what goals did
I achieve throughout the year – not just
January! Then I give myself a pat on the
back for all the ‘Yes’s’ and then I move
on to the ‘No’s’.......why didn’t I achieve
those goals? Maybe they were too hard or
my heart and head weren’t in it or maybe
I didn’t plan enough! It’s important to
understand ‘why’ otherwise it will happen
all over again. Changing habits is what I
think is important – it doesn’t have to be
as cut and dry as giving up chocolate for
the rest of your life or wanting to be a
size 8! Gradual changes are the key; small
changes to our habits eventually develop
into life-long habits. Don’t try and achieve
all your goals at once – you may have a
long list like me! I simplify it and decide
on one goal and apply the changes;
once I feel these are underway, normally
by the middle of February, I then add
another change/goal and this is what I do
throughout the year.
Here are some ideas to help you
achieve the new you in 2017
Plan and prepare – This may seem
boring, but it is so important with any new
change in succeeding and in continuing
to maintain it. For example, I always
make sure I plan my food menus for the
week ahead and prepare as many as I
can at the beginning of the week, so I’m
not tempted by other meals! Benjamin
Franklin said “By failing to prepare, you
are preparing to fail”.
Simply, eat well – instead of giving
up one of your favourite foods, why
not eat less of it, smaller portions and
generally eat well. When dining out, make
sure you choose healthier options on the
menu – you will feel good for it.
Move more – You may well be into
fitness, but if not, think about what
exercise you can do. It might mean
walking for 15 minutes once a day or
walking further, taking the stairs, starting
a yoga class. Any extra movement will
help towards being healthier.
Take up a new hobby – Maybe there
is something you’ve always wanted to try;
learning another language or taking up
crafts.
Be mindful – Take time to think in the
moment. We are all too quick to grab a
coffee whilst walking, not realising we’ve
drunk it before we reach our destination.
So taking time to sit, sip, smell and taste
the coffee is important to still the mind and
body, just relax and be in the here and now.
Be kind to yourself – Put yourself
first, take a bath, relax, go for a walk or
have a massage. Stop comparing yourself
to others, you are you! Be patient – this
is sometimes so difficult, we want things
to happen overnight but remember small
changes will develop into life-long habits.
Declutter – This is great for the mind
and your space! Have a glorious sort out
in each room; donate things you don’t use
anymore, maybe change a room around.
It’s amazing how revitalising this can be!
Breathe - Take time to breathe, notice
your posture, don’t slouch – sit up straight,
close your eyes and inhale slowly through
your nose and exhale slowly through your
nose, make a sighing noise and get rid of
the stale air in your lungs.
Maintain – Overall the most important
part of any change is monitoring and
making sure you are maintaining that
change. Take note of how you are feeling
and what you are achieving. Writing a
journal, just a few lines is a good way to
keep on track and a great way to look
back over the year and say ‘YES’ I did
extremely well in changing my habits! So,
2017 here I come!
Soothe yourself into the New
Year with our…
Soothing Lentil Soup (serves 4)
• 250g of cooked lentils – prepare
according to the packet
• 1 onion, chopped
• 2 cloves of garlic, chopped
• 2 large carrots, chopped
• 1 large handful of spinach
• 2 teaspoons of ground cumin
• 250g of chopped, fresh tomatoes
• 250ml of homemade vegetable stock
• 1 tablespoon of raw coconut oil (or
olive oil if you do not have coconut oil)
Pituitary life | spring 2017

news Professional articles
11
Add the coconut oil, chopped onion and
chopped garlic to a large pan and gently
sauté for a few minutes, then add the
chopped carrots and stir in the vegetable
stock, bring to the boil and then simmer
for five minutes.
Add the lentils and cook for a further
five minutes, then stir in the spinach,
tomatoes, ground cumin. Transfer to a
blender, blend until smooth then serve.
Nutritional Facts:
Lentils are a rich source of dietary fibre
and iron. Cumin dates back to more
than 5000 years, aids digestion and helps
strengthen the immune system.
The new version of our booklet
‘Weight Issues’ will be available at the end
of February. It will include lots of ideas
and tips to help you and Claire has kindly
contributed to this booklet with her expert
knowledge of good nutrition ■
Socialising with an invisible illness
Dr Sue Jackson
It’s January as I’m writing this, and
the major social season of the year
for most of us (Christmas and
New Year) is behind us. But January
is typically the time of New Year
resolutions, which got me to thinking
– what kind of New Year’s resolutions
would you need in order to be in a
good place to socialise during 2017?
Socialising with an invisible illness isn’t
easy – you generally don’t look like there’s
anything wrong with you even though
there is; and fatigue is a big problem for
lots of people with pituitary conditions.
You simply don’t have the resources to do
everything. If we start with the basics -
lots of us need to work to pay the bills
so that’s a significant chunk of time and
energy gone; then you need to eat, so
there’s the food shopping, cooking, eating
and washing up; there’s the need to keep
your living space in good order, so we
need to spend time cleaning and doing
household maintenance of various kinds.
Plus, you need time for yourself – to keep
yourself in good order – I’m thinking
exercise, hobbies and some fun. That’s a
lot of time and energy already used up
before you get to the major social events
of the year.
Energy is like your finances
If you think of energy as being like your
finances - whatever your budget you need
to spend and reinvest what you have
wisely. When it comes to covering the
basics there are some common mistakes
we make that leave us feeling as though
our energy just evaporates. For instance,
lots of people do what I call the “headless
chicken”, valiantly trying to do multiple
things at once before collapsing in a heap
and then doing the same thing again. If
you want to climb the Alps, you have
to do what’s known as the Alpine plod.
You set a very slow speed, and you keep
going all the time with short breaks now
and then. The Alpine plod is a good way
of managing everyday tasks, too. It keeps
your energy stable and, oddly enough, you
usually get more done than you usually
would do and you finish the day feeling
OK, i.e. not like a limp dishrag. The
Alpine plod is best achieved if you make
a list of everything you need to do, and
check it regularly through the day – most
people waste energy by over-using their
memory and the mad bursts of activity
are caused by suddenly remembering that
there’s another thing that needs to be
done today. So, learning to make useful
lists, and sticking up reminders to work
at what I call “pottering speed” (aka “less
chicken”) might be good resolutions.
Time to look after yourself
What about the time and energy you need
to spend on yourself? It can be tempting
to give the bare minimum to our self-care,
especially if we have a long-term condition
that impacts our energy. A condition that
affects how many hours you can work and
what you can contribute to your family can
leave you feeling that you are being selfish
if you take time to look after yourself.
Lots of people that I talk to say that they
feel guilty about not being able to do the
basics, and feel that they are letting their
friends and family down, if they take time
out for themselves. Because the condition
is invisible, friends and family often don’t
understand, and can add to the burden
of guilt that you carry. It’s tempting to do
what others want you to do, and accept
that you’ll have no energy left afterwards.
Lots of people with chronic conditions
talk about “good” and “bad” days.
“Good” days, when they are feeling well
and can do things – usually in a headless
chicken fashion – and “bad” days, when
there is no energy for anything and they
have to take to their bed or the sofa and
recuperate from the physical symptoms
of exhaustion associated with their
condition.
Boom & bust
Spending the bare minimum on our
self-care is not a good way to manage
our energy. Boom and bust tends to
leave people experiencing far more bad
days than they need to. Recuperation is
necessary if you’re ill from over-doing
things, but there is an alternative strategy.
In addition to going at pottering speed
and using lists, making time for activities
intended to promote restoration and
relaxation is important. If pottering
speed and to-do lists are about energy
expenditure, restoration and relaxation are
about recharging your batteries, or energy
Pituitary Life | spring 2017

12 Professional articles
reinvestment if you like. Neither of them
involves doing nothing, only recuperation
requires a minimum of activity; in order
to keep your energy flowing well, you
need to keep working on it.
Relaxation is about promoting our
ability to self-soothe appropriately. Like
all animals, humans are programmed to
self-soothe after experiencing something
difficult. For example, if my cat gets
stressed or is distressed by something,
he will seek somewhere quiet to do some
grooming. With his fur settled to his
satisfaction and his equilibrium restored,
he will come and rejoin the family
group. Grooming is a repetitive action
that soothes the cat’s brain and body,
requiring only some minor effort on the
cat’s part. Some humans have a problem
with choosing appropriate forms of
self-soothing – smoking, drinking, retail
therapy, gambling, and doing drugs all
affect the brain and body, but despite
what we might tell ourselves, they don’t
promote relaxation. What you need are
some hobbies or activities that involve low
energy expenditure and include repetitive
action, for example, wood-working,
knitting, crochet, scrap-booking, painting,
sewing or reading (although the subject
matter will play a part in the effectiveness
of this – a tense thriller is not a relaxing
read).
Household tasks as a form of
relaxation
I suspect I may not be popular for
mentioning it, but some household tasks
can be used as a form of relaxation –
for example, ironing can be therapeutic,
as can brushing the kitchen floor, doing
the washing up, dusting and polishing.
What matters is the attitude you bring to
the task. If you’re in a strop because the
ironing is yet another thing that has to
be done today, it won’t be a therapeutic
experience, but if you’re doing the ironing
at pottering speed, paying attention to
the pleasure associated with getting the
creases out and the rising scent of clean
cotton it can be very relaxing.
If relaxation is about self-soothing, then
restoration is about self-investment and
improving our health and our relationship
with ourselves (our self-esteem, if you
like). Like relaxation, restoration requires
some energy expenditure on our part. It
can be likened to positive growth and can
encompass both our physical and mental
health and wellbeing. Physical restoration
is about movement – keeping everything in
good order. To use another example from
my cat – he regularly stretches himself out
and he makes time to play with us. The
simplest physical forms of restoration for
humans are walking regularly and doing
some simple stretching exercises (there are
some really good tutorials on YouTube).
Mental restoration involves developing
our thinking, and at its simplest it could
involve reading a book that you wouldn’t
normally read, or talking with a friend,
but it could also involve going to see an
exhibition at a gallery or going to a movie.
Things that you can do for short amounts
of time, but that help you to grow and
develop by challenging your perceptions
of the world in various ways. Research
on life-long learning shows that it doesn’t
matter what you learn (whether through
a formal programme or not) it improves
confidence, promotes self-esteem and
fosters resilience.
To get the most out of the energy you
have available, you may need to improve
your forward planning so you can budget
effectively. A timetable of activities that
you follow blindly doesn’t really work if
you have a chronic condition. We have a
tendency to focus on each day at a time,
but we do better if we think about our
energy needs over a longer time period, in
much the same way that elite athletes do.
They need to peak at a particular point for
a major competition, so all their activity
is geared towards helping them do that,
with less important competitions being
used to help them to figure out how they
are progressing. You need to have some
sense of what and when this year your
major energy expenditures are going to
be – a family wedding? A family holiday?
Moving house?). Once you know that you
can start to think about how you need to
build your energy reserves to make sure
you can do the things that you want to do.
I have a year planner that shows me the
big events (in terms of time and energy)
that I have this year, but I also have
monthly planners that help me to get a
sense of how much I have to “spend” in
terms of energy, so I can work out where
and how to build in the relaxation and
restoration. I have a to-do list for each
day to help keep me going at pottering
speed. It sounds complicated, but if you
can work out how to keep your energy
flowing smoothly you will have fewer
bad days, which leads to improved selfesteem
as well as potentially improved
relationships with family and friends.
Improve how you listen
You may also need to improve how you
both listen and talk to yourself. Learning
to listen to yourself properly so that you
know how you’re feeling day on day is
useful. I keep a diary so I can monitor
how my energy responds to the various
demands of my life. Over time it has
provided useful information and helped
me to identify the unhelpful habits that I
can easily fall into which drain away energy
unnecessarily. Making sure that your
eating habits are helping you maintain
good energy, not starving or dehydrating
yourself is also important. In terms of
talking to ourselves, if all you do during
the day is to keep reminding yourself how
tired you are, you’re going to make it more
difficult to manage your daytime energy.
That’s not to ignore how you’re feeling,
but it’s better to acknowledge that “my
energy is feeling low – I need to get up
and move” than it is to say “I feel tired”
and to remain slumped at your desk. And
slumping tends to constrict our breath
which causes us to feel tense and anxious
and that drains away energy, too. So just
learning to sit up straight and regulate
your breathing can make a difference in
daytime energy levels.
Manage your energy
Like many things, learning how to manage
your energy takes time and effort, but the
rewards are so worth it, particularly if you
want to have enough left in your account
to party like it’s 2017! If you’d like more
information, The Pituitary Foundation
has a booklet called “Fatigue Management”
as part of its Wellbeing Series ■
Pituitary life | spring 2017

Professional articles
13
Needles for hydrocortisone injections
Alison Milne, Endocrine Specialist Nurse
When patients are prescribed
their vials or ampoules of
100mg hydrocortisone for
injection in emergency situations,
they may not be offered the supplies
necessary to inject with. Below is a
guide to help when asking for these
supplies.
Sizes and colours of needles
l 21g x 1.5inches 0.8mm x 40mm
(green) for drawing up the solution.
l 23g x 1inches 0.6mm x 25mm (blue)
for administering the injection
These are needed for:
1. Hydrocortisone Sodium Phosphate
100mg/ml - 5 ampoule pack by
Amco (ex efcortesol). Advise you
have minimum of two ampoules of
medication at least.
2. Solu-Cortef (Pfizer) – powder to
mix with water for injections 1ml
(please ensure the water for injecting is
prescribed too). Advise you have two
vials of medication and dilutant at least.
Ensure you have enough needles for each
injection plus a spare.
Where can you get your
needles and accessories from?
You can obtain needles from your GP,
endocrine clinic nurse or local pharmacy
who dispenses the medication. NB: these
may need to be on prescription. There is
a ‘needle exchange programme’ in the UK
which your pharmacist might be part of.
This is for the injecting of medication as
well as recreational drugs.
Sharps disposal boxes and clippers
are available on prescription (FP10
prescription form) in all four nations
of the UK. Different schemes and
arrangements are in place for the safe
disposal of your sharps disposal box.
Schemes vary from nation to nation
and even down to the locality, and
your local healthcare provider should
have information about local disposal
methods. (NHS) See www.nhs.uk/chq/
pages/2421.aspx
ADSHG do supply needles to purchase
and you can contact them through their
website.
www.addisons.org.uk/forum/index.
php?/store/product/7-adshg-adultemergency-injection-kit-small-caseitem-401/
Disclaimer: The Pituitary Foundation is
not responsible for third party products
General tips for injecting
l Check the expiry date
l Wash your hands before preparing
injection
l Always use a new, sterile needle and
where possible use a separate needle
to draw up solution prior to changing
needle for administration
l Check for air bubbles
l Choose the injection site
l Take your time
l Remember, if in doubt give it!
l How to inject video on our website
www.pituitary.org.uk/information/
treating-a-pituitary-condition/
hydrocortisone/
NB: Injection swabs are no longer
required.
Emergency injection administration
keeps you safe until you receive medical
attention. It is not intended to replace you
seeking medical help ■
Pituitary Life | spring 2017

14 Patients’ stories
Richard’s story
My pituitary tumour was
diagnosed almost exactly five
years ago. The symptoms
had come on suddenly nine months
previously, when on returning to work
after a six week break suffering from
extremely painful sciatica, I realised
I couldn’t manage a full day. The
fatigue came out of the blue but was
overwhelming. My first suspicion
was a liver complaint because I’d had
hepatitis many years before and that
had left me with the same lack of
energy. Tests showed this was not the
case. In fact, all the tests I had over
the following months - including an
assessment for ME - proved negative.
In theory I was really healthy.
My employers allowed me to work half
my normal hours while this went on. The
next symptom to appear was my inability
to eat protein-rich food, like meat. I don’t
recall being actually sick if I did, my body
just seemed to know I couldn’t deal with
it. This also reminded me of the hepatitis.
My energy levels went down and down,
as did my appetite. By the late summer
I was surviving mainly on Complan and
porridge. Walking any distance was a real
struggle. Then I began to think my reading
glasses must be very grimy because I was
having difficulty reading things. One day
I polished them once again and closed my
left eye to look and saw that the centre of
my vision was greyed out. I’d got AMD
(age-related macular degeneration)! I
went to the opticians where I was told I
had an inflamed optic nerve and ought to
go to A&E as soon as possible. It was a
Bank Holiday weekend but I did go on the
Monday. There I was told the protruding
nerve was something I was born with and
the problem must be further in. I was sent
for an MRI. Following that, I was told
to attend for a CT scan of my pituitary. I
looked on line and found pituitary tumours
… and a list of nearly all my symptoms!
Getting a diagnosis at last was a relief but
the prospects were scary - would they have
to take my brain out to get to it?
Fortunately, I live a bus ride from a major
hospital, which has an endocrinology
department. I met the team in the first
week of October and was in surgery
within ten days. The endocrine specialist
nurse said later that, when she first saw
me, she was surprised I hadn’t been an
emergency admission. The first relief I
had was being prescribed hydrocortisone,
which brought my appetite back to
normal. The operation returned my
vision. The neurosurgeon was brilliant
and it was the first time ever that I saw a
consultant after the operation. He’s a star.
So was the endocrine nurse. I spent the
next month recuperating at my brother’s.
Hernia op
Further treatment was delayed because I
also had a hernia following my sciatica.
There should be a warning given to patients
using a lot of codeine phosphate about
the dangers of long-term constipation!
For a while my thyroid was overactive,
which meant I couldn’t be given a general
anaesthetic, so that operation was delayed
until the thyroid quietened down. Once
that was out of the way, my radiotherapy
could begin.
This had its own consequences - it
seemed to have inflamed the Eustachian
tube of my right ear. I became partially
deaf on that side and developed tinnitus.
The deafness subsided gradually but the
tinnitus remains, though it’s just a hiss and
can be ignored.
Acromegaly diagnosed
My condition was diagnosed as
acromegaly - too much growth hormone.
That remains but the other hormones are
more or less non-existent. I was told that
the tumour had been growing for three
or four years and the endocrinologist said
he could see changes in my face from
before that time. All I notice is that I
now possibly have two ‘horns’ growing
at the edge of my eyebrows which may
not have been there before. My shoe size
might have increased as well, but that
may just have come from not having my
feet measured previously. To treat this I
was prescribed Somatuline (lanreotide)
every three months. Over the next few
years I experienced a rollercoaster of
effects each time I had that injection. It
was exhausting. In the end I asked for a
change of medication and am now on
cabergoline and the ups and downs are
less extreme. I’m sure this was a relief to
my GP because those Somatuline shots
cost £900 a time!
Fatigue
As I’m sure you’re all aware, the effects
of these conditions are many and varied
and likely to be unique to each individual,
however some things seem to be common.
Fatigue is one - I often have to lie down
in the middle of the day, even if I haven’t
done much. One curious thing is that my
legs feel tired when I start walking but
improve over time. The other common
factor is mood swings. I regularly am hit by
waves of emotion, which can be difficult
to discriminate - grief, rage, almost mania
and sexual arousal. I make female friends
laugh by describing it as continuous PMT.
One curious thing is having a wave of
despair when I kneel down … and it’s
not just the thought of the strain on my
knees when I have to stand up. This can
drain my energy too. Apart from that I’m
active, fit and well, considering I’m in my
late 60s. To date, the tumour continues to
shrink. Life is different but copeable. I go
to the Local Support Group meetings and
campaign to stop the government selling
off the NHS.
Rare condition
The reason it took so long to diagnose
my tumour is that this is a fairly rare
condition. My GP took my complaints
seriously but she’d never come across this
before. So it’s important to give your GP
as much information as they’ll tolerate
about pituitary conditions so that they’ll
be better prepared when the next case
appears ■
Pituitary Life | spring 2017

Patients’ stories
15
Anastasia’s story
On the front cover of January
2007 edition of Pituitary Life,
we featured a photograph of a
five year-old girl meeting with Their
Royal Highnesses, The Prince of
Wales and The Duchess of Cornwall,
whilst she was in Great Ormond Street
Hospital. The little girl was Anastasia,
whose story about her DI was then
included in the January 2008 edition.
We are delighted to hear how she is
now, almost 16 years old.
My name is Anastasia. My Dad helped
me with this article by asking me a few
question about my life with diabetes
insipidus (DI) as a teenager:
Where were you born and
where do you live now?
I was born in Kent, England and lived
there until I was six years old. I then
moved to Michigan in the United States
and have lived there until now.
How old are you now?
I am 15 right now, but turn 16 on 31
January 2017
What do you love to do?
Music is my passion, and I have been in
love with singing and the piano since I
was a four or five. I hope to take a degree
in music at college. I also ride horses,
particularly jumping, which I have done
since I was around nine or 10.
When and how were you
diagnosed with DI?
I was diagnosed with DI when I was five
years old, when I got to Great Ormond
Street Hospital for Children, after a long
journey of other doctors not knowing
why I needed to drink so much water.
How do you explain DI to
someone?
I explain DI by giving the example of a
bath tub. Most people have a plug to keep
water inside of their bath tub; people
with DI don’t have a plug in their bath
tub, causing a lack of water retention and
for most cases unquenchable thirst, if not
treated with desmopressin.
Ana today
Is having DI as a teenager
different to when you were
younger?
Yes, I think the major factor of my DI
that it has certainly levelled out a bit.
Whether or not that’s the continual use
of medication or hormone changes, the
extremes of my DI are much less than
they used to be. However, my DI does
tend to get in the way more now, because
I do much more activity than when I
was younger and I am held much more
accountable to take my medication on a
regular basis.
Do your friends treat you any
differently because you have DI?
I generally don’t bring it up to some friends,
because it’s quite an easy disease to hide
once you medicate. Those who know,
definitely treat me differently because
they can see the signs when I haven’t had
my medication, and generally help me
remember to take them or remind me to.
What annoys you or worries
you about having DI?
One thing that annoys me is that I am
completely dependent on
desmopressin to feel comfortable.
I constantly worry about having
access to desmopressin, and being
able to take it, because without
I can barely function without
having a bathroom or water to
drink nearby.
Do you think DI will stop
you doing anything?
I think it might stop me doing
things if my access to a water
or so on is deprived, however it
generally doesn’t put a hindrance
on my day to day life and
probably won’t do.
Do you ever wonder
why me, or seeing as DI
is really very rare?
I did when I was first diagnosed
with DI, however I don’t really wonder
about it anymore. My DI is especially
quite rare because they don’t know the
cause of it at all, so I used to wonder why
I happened to get the disease.
What does your family think
about it all?
I think when I was younger and my
condition was a little more extreme,
everyone was worried. Now I don’t think
my family is too concerned, other than
me keeping on top of my medication
which is an ongoing conversation in my
household.
Pituitary Life | spring 2017

16 patients Professional Patients’ stories articles
What advice would you give
someone with DI?
I think a major piece of advice I have is
to stay on top of your medication. The
more routine it gets for you, the easier it
will get, and you won’t have to deal with
the uncomfortableness that comes with
not having it.
Anything else you would like
to say?
I would like to conclude that you have
the power of not letting DI bring you
down or hinder your life. You just have
to regulate it and be open about it with
others so not only can you help yourself
but others can help you too.
...and a note from Dad, who would like
to thank Pituitary Life and Pat McBride
for her support in Anastasia’s diagnosis
and for continuing to be interested in
her life, as she blossoms into a beautiful
and talented young lady knowing that DI
will always be there, but can’t stop her
dreams ■
Alfie’s story Written by Conor Watts, Alfie’s dad
My son, Alfie, was born on 30
December 2014. His mother
and I were together at the
time, and were both excited and
nervous about having a little baby to
be responsible for. He was 7lb 1oz and
looked a picture of health. My partner
wanted to breast feed but Alfie was
not feeding too well, so after two days
he was discharged home on formula
milk.
Alfie seemed to be quite a quiet baby,
and my mother even compared him to
me when I was a baby. However, he still
wasn’t feeding as he should and his colour
was quite yellow. He hadn’t been home
a day when we got in contact with the
midwife to let her know as our concerns
were growing. She came that day and
admitted him immediately to ward 31,
Prince Charles Hospital.
Low blood sugars
On admission, his blood sugars were
extremely low at 1.3 and he was very
drowsy. He was put on intravenous
fluids and had two-hourly pinprick
blood tests to check his sugar levels.
We were very upset and anxious,
not knowing exactly what we were
dealing with.
Alfie was then seen by a visiting
endocrinologist who happened
to be carrying out a clinic in
Prince Charles Hospital. It was then
that it was explained that Alfie may
have a condition called
panhypopituitarism,
which is very rare and he would need an
MRI scan of the brain. This was done
a day or so later, but in the meantime
Alfie had a cortisol level checked and this
confirmed the condition.
It was a very upsetting time, especially
when the realisation kicked in that Alfie
would have life-long daily medications to
take, which were needed to keep him well,
and he would need more care than a child
would usually require.
Lifeline for the family
We were given an appointment to see
Chris Davies in the University Hospital
of Wales, who is an endocrine specialist
nurse, and she taught us how to administer
a hydrocortisone injection in case of
emergency. The whole family was given
this training, and Chris has been a lifeline
for the family ever since! She has seen us
a number of times since and is always at
the end of the phone whenever we need
advice or help concerning Alfie.
When Alfie was six months old, my
partner and I split up and Alfie came to
live with me. We now live next door to my
mother and father, which is ideal as they
are there for us whenever we need them.
We gradually came to realise that Alfie
had a turn in his right eye, and he was
referred to the eye clinic. It was there
that we were made aware that Alfie can
see very little out of that left eye, and
can probably only see light and dark.
The ophthalmologist feels that there is
nothing that can be done for this as it
is related to the panhypopituitarism and
Pituitary life | spring 2017

Professional news Patients’ stories articles
17
the optic nerve in that eye is severely
under-developed. The right eye is also
affected but Alfie is able to see, and that’s
what matters to us. He has recently been
prescribed glasses, which look so cute on
him, and these may help with the squint,
but it may be that he will require surgery
for this at a later date.
Regular monitoring
Alfie is monitored regularly in the
paediatric endocrinology clinic, and it was
there that it was decided that Alfie would
also need growth hormone injections. We
had noticed that Alfie wasn’t growing as
he should be and all the children in his
playgroup were getting bigger but he
wasn’t. He is still in aged 12 months
clothes, and he is now aged 2! So we
underwent training for this, and Alfie was
started on the growth hormone recently.
He doesn’t like it, but it is just another
thing that we need to do.
Ambulance trip
I don’t think we realised the extent of this
condition until quite recently, just before
Christmas to be exact. Alfie had been
unwell with a cold for a couple of days
prior and developed a cough, so he was
already on double dose hydrocortisone,
which is the first step in helping him
through an illness. However, my mother
had him that night and the following
morning, as I had work, and whilst
placing him in his pram to take him to see
the GP for his cough, he became vacant
and his eyes started rolling back. He was
drifting in and out of consciousness and
was like a ragdoll. An ambulance was
called and my grandparents came to help
my mother, who was obviously distressed.
She realised that she needed to give him
the emergency injection and managed
to administer this as soon as possible.
However, she expected him to respond
quickly to the injection but he didn’t, and
he was not much better by the time the
ambulance arrived. He started vomiting in
the ambulance and was still very drowsy.
He was admitted to ward 31, where a line
was put in and on testing his blood sugars
had fallen to 1.1.
With treatment, it was amazing how
quickly he recovered and Alfie was allowed
home the following day. The doctor found
that Alfie had tonsillitis and an ear infection,
and he was discharged on antibiotics and a
throat spray. However, the antibiotic gave
him diarrhoea and, on the advice of the
hospital, this was stopped as he could fail
to retain the hydrocortisone which could
make him ill again.
Repeat MRI
Alfie has since recovered but always seems
to have a cold or cough. It is very difficult
sometimes to know when to double his
steroid and how long to keep this up for,
but we are gaining the knowledge needed
all the time. Alfie will have a repeat MRI
this year, as the original one was not
clear enough to reveal the extent of the
condition. What we do know is that we
wouldn’t be without him for anything
and he is such a gorgeous, happy and
intelligent little man!
I found The Pituitary Foundation to be
a great source of support and information
for both I and my family and we wanted
to give something back. It was at this
point we decided we wanted to do some
sort of fundraising and after meeting
with Jay Sheppard (Fundraising Manager)
who lives near us, it was decided that me
and my family would set up a fundraising
group to try and raise money but also
awareness in the local community.
Fundraising group
Last September, the Mountain Ash
Fundraising Group was formed and the
first event was the Chepstow Stampede
where I, my mother, my girlfriend and 16
other family and friends raised £1,200.
Then just before Christmas, coincidentally
on the night Alfie was rushed to hospital,
my gran and her skittles team organised
a charity night that raised £800. Also, a
local social club raised £300 towards our
fundraising and we are looking at things
that we can do in the near future ■
The Pits – Liz’s book
One of our members has written a book about her pituitary journey. If
you email Liz at stockley539@btinternet.com this can be purchased
for £8.00 directly from Liz, through Paypal. You can also send a
cheque made payable to Liz which we can forward to her. Liz is very kindly
donating half of the sales to us and has generously sent us £100 so far.
This is an excerpt from the very beginning:
‘I didn’t go home when I finished work at lunchtime today. All morning the sunlight had been dancing
outside my classroom windows, calling me out, and I was tired and irritated by a noisy class, so I escaped when
the bell rang and drove three miles through the autumn sun to the beach. It’s hard to know when a story really does
begin. That day with its bright September sun and cleansing wind was when I realised that there was a story about to start, the day when I accepted
that something was wrong. But I suppose it had really started long before that ’ ■
Pituitary Life | spring 2017

18 Professional Raising awareness articles
Christmas update
We would like to thank everyone who supported
us during Christmas. Whether you purchased
cards, sold raffle tickets, ordered merchandise
or simply donated to our Christmas Appeal we cannot
thank you enough. We managed to raise £17,029 over
the festive period and this would not have been possible
without your help.
Christmas Appeal 2016
The 2016 Christmas Appeal raised £3,153. We will also be able
to claim Gift Aid on top of many of these donations, so it’s
likely that we will have generated almost £4,000 through this
appeal. We appreciate each and every donation and whether you
gave £1 or £100, we really cannot thank you enough.
Rotary Charity of the Year
Christmas merchandise
Christmas orders totalled £6,377 which
is phenomenal but what’s more, many of
the generous people placing orders also
made donations as well as their orders. These
donations totalled £1,730.
Office Volunteers – Thank you!
We would like to say a huge, heartfelt thank you to all of our office
volunteers for their help during the festive period. Thank you to
Mike and Anne Griffin, Pat Broad, Lucy Clifton, Phil Rouse
and Stephen Hurley. They worked tirelessly to ensure that all
orders were sent out in a timely fashion as well as helping to stuff
envelopes and folding all 6,000 raffle ticket stubs for the Christmas
appeal mailing and we are indebted to them all for their support ■
Milton Keynes Grand Union
Rotary Club President Susan
Jackson chose us as the
charity of the year raising over £1,500
just halfway through her term as
President. Thank you to all members
and particularly Susan for nominating
us. Here is what
Susan had to say:
“In July 2016 I became
president of Milton Keynes
Grand Union Rotary
Club and have chosen The
Pituitary Foundation as my charity for the year.
The Foundation is close to my heart because my
husband, Tim, has hypopituitarism. Eventually
diagnosed in 1998, Tim had coped stoically for
two and a half years with a range of symptoms,
which sometimes sent him to his GP, but generally
left him in a state of always feeling unwell. These
included mood-swings, fainting and tiredness,
joint and chest pains. Eventually a GP referred
him to an endocrinologist in Oxford. The relief
of obtaining a diagnosis and impact of starting
treatment was enormous.
Since then, Tim’s learned to manage his
condition pretty well. But it’s something
that colours our lives and that’s why I had
no hesitation in choosing to support The
Foundation in my Rotary activities as Club
president. I kicked off by doing a sponsored
loop-the-loop in a glider back in August.
This was organised by the Stony Stratford
and Wolverton Rotary Club, with half of
what I raised going to End Polio Now (a
Rotary-supported charity) and the rest
(£500) to The Pituitary Foundation. This
was followed by a fund-raising quiz night
in November. Other fund-raisers we have
coming up are a race-night on 17 February
and a barn dance on 31 March. If you’re in
the MK area and would like to come along
and join in the fun, then please email me
at susan.jackson35@bt.internet.com for
more details.
Milton Keynes Grand Union Rotary
Club also jointly organises an annual fundraising
cycle challenge – the extra mile
challenge. This is held over a weekend in
September, usually in France, and this year
will be in Brittany (see www.extra-mile.
org.uk for more information). The event
has raised £1.25m over the last 13 years
for a wide range of charities, and in 2017,
a proportion of the funds raised will be
donated to The Pituitary Foundation. It’s
a team relay event, so if you like cycling
and fancy combining it with fund raising
and a weekend break in France, we’d be
happy to welcome you!”
If you belong to a group or society
such as a Rotary Club, Inner
Wheel, Ladies Circle, Women’s
Institute or indeed anything else,
then would you consider raising
funds on our behalf. Whether that
is by nominating us as your chosen
charity, just like Susan did, or simply
by holding ad hoc fundraising
events. If you would consider this
please email jay@pituitary.org.uk ■
Pituitary Life | spring 2017

Wall of thanks
19
Isabella Andrews Appeal
Fund - A special thank you
Over the past three years Isabella’s family
have worked tirelessly to raise nearly
£20,000 towards the “Isabella Andrews
Appeal Fund”. Our Chief Executive,
Menai Owen-Jones, presented them
with a certificate of appreciation to
acknowledge this. Thank you all and we
look forward to seeing you all again at
the annual golf event in May!
Pictured are just some of those involved
with the fund-raising. Our Chief
Executive Officer, Menai Owen-Jones,
presenting the family with a certificate
of appreciation, Kelly Park (Isabella’s
mum), Lynne Crawshaw, Steve
Crawshaw, Mary Park (gran), Isabella
Andrews, Maisie Andrews (sister) and
Garry Park (grandfather)
Firework display - Windsor
Fundraising Group Leader, Gemma
Simpson, managed to persuade
the organisers of the Eton Wick
firework display to raise funds
for The Foundation and in turn
they raised £580. Her son Oscar
collected the cheque on our behalf
Carol singing - Thanks to Helen
Cowen and the Sheffield singers’
community choir who sang carols at
their local pub raising £88.33!
Waitrose Community Matters
- Thank you to shoppers at Waitrose
stores around the UK who voted for
us in Waitrose Community Matters
schemes. We were fortunate to receive
over £2,000 as a result. Here’s volunteer,
John Daly, collecting a cheque for £230
from Waitrose Kings Hill
Chepstow Stampede – We were
thrilled to have a team of 35 people join
us at the Chepstow Stampede 5K and
10K obstacle course. Our staff team was
well represented with Jay Sheppard, Fraser
Cardow, Emily Mullen, Sian Pitman and
Martin Cookson all taking part. Obstacles
ranged from giant hay stacks to freezing
cold muddy puddles. As this event was at
the end of October, it was not for the faint
-hearted. We are delighted to say that our
team of participants raised over £3,000
between them
Jingle Bell
jogging
- Jane
Brassington
completed the
‘Windermere
Jingle Bell jog’
raising £130
Keep on running - Elaine
Bates and her family took on the
Great South Run and raised £510.
Many thanks to all of you
Britney the Tumour - Pituitary
patient, Charly Clive and her friend, Ellen
Robertson, wrote a play called “Britney”
that featured at the Edinburgh festival
as well as Broadway and received high
accolades. They donated a percentage of
ticket sales to The Pituitary Foundation
and managed to raise £2,500. Pictured
here are producer, Alex Cartlidge, Charly Clive,
our Fundraising Manger, Jay Sheppard, Ellen
Robertson and director, Emily Burns
It’s a kind of magic….Phillip Young has
been wowing audiences by performing magic
for us and asking for donations. Phillip has
raised the magical amount of £850!
Christmas fundraising –
Alison Robshaw and staff at Newly
Weds Foods Ltd in West Yorkshire
managed to raise £628.91
Our thanks to Caroline
Fiennes who held a clothes and
jumble sale on our behalf and
managed to raise £80 ■
Pituitary life | spring 2017

20 Professional Raising awareness articles
Masquerade Ball 2016
Saturday 15 October 2016 was a monumental day for The Pituitary Foundation. Our inaugural
Masquerade Ball took place at the luxurious Millennium Mayfair hotel in London. It was a night
never to be forgotten.
Above: Harry Cruz, magician entertains
We welcomed 250 guests from
all over the UK and every one
had the time of their lives
with some truly incredible feedback
received after the event.
Guests were welcomed with a
champagne reception upon arrival where
harpist, Catrin Meek, set the mood. They
went through to the exquisitely decorated
Ballroom. Our host for the evening was
BBC presenter, John Inverdale, who was
excellent throughout the night with his witty
comments and jovial humour. Magician,
Harry Cruz, who is part of the creative
team for ‘Dynamo: Magician Impossible’,
wowed our guests as he walked through the
champagne reception before moving from
table to table as our guests were seated,
amazing them with his repertoire of magic.
It was a celebration; a celebration of
our charity and celebration of how far
we have come together over the years.
We heard speeches from Chief Executive
Officer, Menai Owen-Jones, and Chair of
our Trustees, Jenny West, who welcomed
our guests and explained the reason
for the theme, which was that because
pituitary conditions are a hidden illnesses,
‘Masquerade’ represented this. The Chair
of our Organising Committee, Clare
Sumpster, spoke from the heart about her
experience as a parent of a pituitary patient,
which really made guests appreciate why
they were there and why their donations
made a difference. The final speech
quite simply left the audience in awe as
Patch Russell and Geordie Tulloch spoke
about their Edinburgh to Paris challenge.
Above: the ball in full flow
Pituitary Life | spring 2017

news Raising awareness
21
Above: Foundation staff and volunteers
They cycled from Edinburgh to Dover,
kayaked the channel to Paris and then ran
the equivalent of five marathons in four
days to reach Paris. Patch and Geordie
managed to raise a phenomenal £60,000
of which The Foundation received
£20,000. Our guests were mesmerised
by their accomplishment. Patch really
made guests think when he ended his
speech by saying that him and Geordie
had undertaken this gruelling challenge to
raise funds, now all guests had to do was
to dig deep and wow, dig deep they did!
Guests were treated to a sumptuous
three course meal, whilst a stringed quartet
set the mood as guests ate and the drinks
flowed. There were laughs aplenty as John
Inverdale and World cup winning rugby
legend, Josh Lewsey MBE, conducted our
heads and tails game.
We ran a silent auction on the evening,
which had its own dedicated website
launched two weeks prior to the event, so
that people could make bids on items even
if they were not attending the event which
proved incredibly popular. We also ran a
live auction which was conducted superbly
by our auctioneer, Mike Morrison, who
we cannot thank enough. Mike really did
encourage guests to bid higher. Mike is
not an auctioneer by trade, but we think
he should be!
Some of the auction and silent
auction items that we sourced were
superb, ranging from signed Arsenal and
Liverpool football shirts, a shirt signed
by the historic English rugby team who
completed a series whitewash on their tour
of Australia, holidays at cottages around
the UK including Devon, Scotland, and
Cornwall, tickets to the Wimbledon
Ladies Final 2017, a cycling experience
for four people with an Olympic gold
medallist, a book signed by every
living UK Prime Minister, helicopter
pilot lessons, art, jewellery, skiing
holidays and many more fabulous
items. Thanks to everyone who
donated items for both our silent auction,
raffle and our live auction. We appreciate
that many of you, our members, donated
kindly and without the generosity of our
donors we simply would not have been
able to raise as much as we did.
We would like to take this opportunity
to thank all of our Event Organising
Committee for their help in the build
up to this event. Thank you to Rosa
Rubner, Amy Pigott, Claire Thatcher, Pat
McBride, Gez Thompson, Susie Graham,
Sarah Landale, Peter Landale and Jenny
Raymond all of whom contributed in
helping us to organise this event. Thank
you also to everyone who gave up their
time to help with the smooth running of
the event by volunteering on the night.
Thank you to Fraser Cardow, Emily
Mullen, Sian Pitman, Gabrielle Welland,
Rosa Watkin, Danielle Cox, Courtney
Rose, Emma Watson, Lydia Golinsky and
Amy Leighton.
We would especially like to thank the
Chair of the Organising Committee,
Clare Sumpster, for her incredible efforts.
Clare worked tirelessly for many months
whilst we were organising this event
and put in so much effort that it was
unbelievable. Without Clare’s drive and
determination this event would not have
been the success it was. Clare really was
the driving force as she brokered many
great deals with the hotel and caterers as
Above: ball harpist, Catrin Meek
Above: John Inverdale Clare Sumpster & Josh Lewsey
well as sourcing many auction items and
selling many tables to friends and family.
We are absolutely thrilled to announce
that the inaugural Masquerade Ball
generated £87,000 gross income. Of
course there were many costs associated
with this event so the net income to The
Pituitary Foundation for us to invest in
our vital services was £45,000.
Our next Ball could potentially be during
spring 2018. Confirmed details of this event
will be in future issues of Pituitary Life. If
you attended the Ball, we are certain that
you will have enjoyed yourself enough to
want to attend the next one. If you were
unable to attend this event then you simply
have to join us next time.
If you work for a company that may be
interested in sponsoring an event of this
type or indeed if you would be able to offer
anything to donate in terms of auction
prizes, then we would love to hear from
you, please email jay@pituitary.org.uk ■
Pituitary Life | spring 2017

22 Professional Raising awareness articles
Dan at The Ball
A patient’s experience of going to the Ball
I can’t deny — I was nervous.
As I made my way into the Millenium Mayfair Hotel in Mayfair,
dolled up to the nines in dinner suit and overly-large Batman
mask, I reflected on how I had ended up at The Pituitary
Foundation Masquerade Ball.
I was diagnosed with acromegaly back in 2007 after a chance
encounter with some final year medical students who, on hyperalert
during an exam, spotted the common symptoms and
suggested that I might have acromegaly.
This wasn’t my first encounter with a rare medical condition
though. I was born with Wyburn-Mason syndrome, an extremely
rare vascular condition that sits around my mid-brain and
affects my visual pathway, rendering me blind in one eye. More
commonly known as an AVM (arteriovenous malformation),
this was something I had lived with from birth and - though not
confirmed - probably contributed to my pituitary condition.
So as I entered the plush surroundings of the hotel and tried
to figure out where I had to go (one eye and poor peripheral
vision due to further sight loss; thanks Acro!), I grabbed a glass
of champagne, stood to the side and observed.
The room was packed with beautiful gowns and wellgroomed
suits. I quietly observed everything, letting it soak
in. After a few moments, a couple of volunteers from The
Foundation approached me and asked if I would like to buy
some raffle tickets. ‘What the heck’, I thought, and bought a
couple of strips. They asked me where I had come from and I
told them Bristol, and of course that got us talking because The
Foundation is based there too. They asked in what capacity I was
here, and I said as a patient. Whilst that was true, I also had a
slight ulterior motive: I had published a memoir called Me, Myself
& Eye the year before, chronicling my experiences with AVMs
and acromegaly, and I was here to try and spread the word. I’d
even produced some handy flyers, just for the occasion. At that
point they suggested that I meet Pat McBride, Head of Patient
& Family Services. I was starting to relax.
We made our way into the luxurious dining area. As I took my
place, I introduced myself to the people sat next to me. To my
right: two empty chairs. Somehow that made me even more selfconscious.
Daft, I know. I got chatting to the couple next to me
about the event and I started to talk about my experiences and
the book. I gave her one of my flyers. She read the excerpt from
the book and laughed.
On the other side of the table sat a group of four who all
clearly knew each other. The couple sat next to me asked where
they were from.
“Birmingham”, they replied in unison.
“So are we!”
“I’m not”, I piped up. “I’m from Bristol.”
“And what brings you here?” asked one of the girls.
“Well I’ve got a pituitary condition and another very rare condition, so I
wanted to show my support. How about you?”
“Well I’ve got a very rare condition too!” she responded with
interest.
And suddenly it felt like we were about to play Rare Conditions
Top Trumps and I knew that my Wyburn-Mason would be the
winning card. Less than thirty cases in the last fifty years -
worldwide? Not much could beat that.
“Sounds intriguing”, I said. “You go first.”
“Well I’ve got something called an Arteriovenous
Malformation…”
“An AVM?”
“Yes! How do you now about AVMs?!”
“I’ve got one too.”
And suddenly the table went quiet and we stared at each other
in disbelief.
“I’ve never met anyone with an AVM!” she cried out. “This is
amazing!”
And with that we stood up, ran to each other and hugged.
We couldn’t believe this was happening! Two people, with an
incredibly rare condition, sat on the same table. She told me
about her AVM which was in her leg and I told her about
mine, in my brain. And that was it. For the rest of the night we
chatted, laughed, told stories and of course friended each other
on Facebook.
And to top it all off, I won 2nd prize in the raffle! I had
suddenly gone from feeling like a shadow to being on top of
the world.
So thank you, Pituitary Foundation, for not only providing
a fantastic night but also for bringing together two very rare
people in a moment of pure chance. It makes being rare just that
bit more special ■
Pituitary Life | spring 2017

news Raising awareness
23
2017 Events marketing
Mountain climbs
Snowdon - March 19
£30 registration fee (reimbursed if over £500 is raised)
£150 minimum sponsorship
Join us as we scale Wales’ highest mountain. This trek takes in
picturesque scenery and the path means that it is open to walkers
of all abilities.
Ben Nevis - 4 June 2017
£30 registration fee (reimbursed if over £500 is raised)
£150 minimum sponsorship
At 1,345 metres (4,412 feet) above sea level, Ben Nevis is the
highest point of the British Isles. We’ll take you on a route that
follows an established rocky mountain track. It goes through some
truly breath-taking scenery, all the way up to the summit.
Pen-Y-Fan - 21 May 2017
FREE registration
NO minimum sponsorship
Our annual Pen-Y-Fan trek is a popular challenge that raises on
average £3,000. Come and join us to take in some spectacular views.
This is a great walk and open to all the family.
Challenges for the brave
photo: Aleem Yousaf, Creative Commons
Attribution-Share Alike 2.0 Generic license.
Orbit abseil - 24 June 2017
£30 registration (reimbursed if over £500 is raised)
£250 minimum sponsorship
The ArcelorMittal Orbit is the UK’s tallest sculpture providing an
adrenaline-fuelled way to see London at 262 feet above the city.
Your courage and sponsorship will help us support more patients.
Be brave for them and enjoy a thrilling experience too!
Zip World April 22 (TBC)
£30 registration (reimbursed if over £500 is raised) £200
minimum sponsorship
Zip World Velocity is the fastest zip line in the world and the longest in
Europe. This adventure takes you on the little zipper, 700M, to build your
confidence before you journey up the quarry on the famous red trucks.
Take in the stunning views from the top before you descend down the
Big Zipper over the quarry lake at speeds reaching over 100mph
continued on back cover ›
Pituitary Life | spring 2017

2017 Events marketing (continued)
Challenges for the brave
Pituitary zipwire - 19 June
£15 registration ((reimbursed if over £250 is raised)
£50 minimum sponsorship
Launch yourself from the 70m high cliff edge and speed along
the length of the 80m deep flooded quarry. Reaching speeds up to
40 miles per hour, this exhilarating ride will take your breath away!
Running events
How about joining “Team Pituitary” at any run during 2017? If
you join “Team Pituitary” you will receive a state of the art running
vest and comprehensive training guide designed to ensure that you
complete the race you enter easily.
Brighton Marathon - 9 April
(£35 registration fee £350 minimum sponsorship)
Bupa London 10K - 29 May
Great North Run - Sunday 10 September
(£35 registration fee £350 minimum sponsorship)
Bristol Half Marathon - Sunday 17 September
Cardiff Half Marathon - Sunday 1 October
Alternatively you may wish to run in any event in your area, if this is the case we would love to hear from you and will support you
every step of the way. Email jay@pituitary.org.uk or call 0117 370 1314.
Contact us:
Editor: Pat McBride: 0117 370 1315 or pat@pituitary.org.uk
Patient support & Information Helpline:
0117 370 1320 (Monday to Friday 10:00am – 4:00pm)
or helpline@pituitary.org.uk
Endocrine Nurse Helpline: 0117 370 1317 (10:00am to
1:00pm and 6:00pm to 9:00pm on Mondays, also on Thursdays
9:00am to 1:00pm)
General enquiries for non-patient support enquiries
Main switchboard: 0117 370 1333
or enquiries@pituitary.org.uk
Please use this number and email for:
• Website and log-in issues
• Publications orders
• Merchandise
• Conference
• Any non-patient support related enquiries
Membership enquiries
If you have an enquiry specifically relating to membership
please contact membership@pituitary.org.uk or main
switchboard 0117 370 1333.
Fundraising enquiries
If your enquiry relates to raising funds please contact
fundraising@pituitary.org.uk or main switchboard 0117 370 1333.
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.
© 2017 The Pituitary Foundation
• Registered company number 3253584 • Registered charity number 1058968
The Pituitary Foundation
86-88 Colston Street, Bristol, BS1 5BB
Working to support pituitary patients
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