Issue 33

Summer 2016 edition
Issue No: 33
£5.00 inc P&P
for non-members
Our new pituitary
and membership
survey
Can you
donate
blood?
Our new
DI campaign
What’s the
difference between
stress and anxiety?
Fatigue
Weight issues
Four patients
tell their stories
Inaugural
masquerade Ball
Pituitary life | autumn 2012
www.pituitary.org.uk

2
news News
The Pituitary Foundation
Survey 2016
Contents
News 2-10
Professional articles 11-17
Patients’ stories 18-24
Raising awareness 25-29
Wall of thanks 30-31
Please help us by taking the time
to complete our latest survey,
which is enclosed with your
edition of Pituitary Life. This is an indepth
survey to analyse the needs of
the pituitary community.
The purpose of this is to ask our
services users about their condition, the
care they receive, how it effects their
life and how we might be able to adapt
what we do to offer the most appropriate
information and support. It is important
that we collect feedback from our
community on a regular basis to ensure
that we are meeting need and providing
the best possible service for people
affected by pituitary conditions.
Please return the survey in the freepost
envelope provided by 31 August 2016.
We will feedback the results in Pituitary
Life Spring 2017 and on our website.
If you have any questions regarding
the survey, please feel free to contact
Emily Mullen on 0117 370 1319 or email
emily.mullen@pituitary.org.uk
On behalf of everyone at The Pituitary
Foundation – thank you for your ongoing
support ■
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. This regular article
helps keep our members informed
about our recent activities, and gives
details about how to get involved in
the three campaigns we run each year.
■ In April we launched a new campaign
to raise awareness about emergency
hydrocortisone to ambulance staff
by publicising a free e-learning
module. We are running this e-learning
module campaign in collaboration with
Andy Baines (Advanced Paramedic),
and North West England Ambulance
Service who originally developed
this e-learning module. The Pituitary
Foundation is contacting ambulance
trusts and training bodies about the
module during the campaign.
You can help by taking a flyer to your
ambulance trust or A&E department
to help make staff aware of the free
e-learning module. To request a flyer,
email campaigns@pituitary.org.uk
remembering to give us your address.
We’ll then send you a flyer in the post.
Alternatively please ring 0117 370 1316.
■ The Foundation is currently involved
with The All Wales Medicine
Strategy Group’s assessment of
FREE adrenal crisis e-learning
module for paramedics
Developed by North West Ambulance Service
Adrenal Crisis is life-threatening – would you know
how to treat it?
“The module was highly
informative and certainly
enhanced my knowledge
and awareness in dealing
with a patient in
adrenal crisis”
(Quote from a
paramedic)
This e-module is
currently being used
in paramedic training and
is free to access online at
www.nwaslearningzone.net/
pituitary/ The password is: pituitarydemo
Registered Charity 1058968 Visit www.pituitary.org.uk for more information and leaflets about treating adrenal crisis.
E-Learning module flyer.indd 1
6/04/16 5:25 PM
Pituitary Life | summer 2016

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pasireotide (Signifor®), a medicine
for uncontrolled acromegaly. This
follows our involvement in the same
process in Scotland which saw Pasireotide
being approved last year. We have
completed a patient group submission
report, and presented at the CAPIG
meeting in Cardiff in April alongside
various endocrinologists and assessors.
A decision is expected early summer.
■ We were involved with Rare Disease
Day, which included representing
pituitary issues at various events run
by Rare Disease UK. These included
events at The Welsh Assembly and
The Rare Disease Implementation
Group meeting about health policy
in Cardiff. We also raised awareness
by setting up a stand at the ‘Pfizer
Supports Patients Affected by Rare
Diseases’ event in London. We also
used social media and our website
to spread awareness, reaching over
20,000 people via Facebook alone in
just 24 hours.
In June, we launch our summer
campaign – ‘Know your insipidus
from your mellitus’
This is an awareness campaign about DI and desmopressin,
highlighting the importance of this life-saving medication and the
differences between diabetes insipidus and diabetes mellitus. It is
vital not to confuse the two conditions because they have different causes
and very different treatments. We will be targeting A&E staff and nurses
with this message. We know many of you feel passionately about this
issue and we would appreciate your help during this campaign.
To find out how to get involved just visit: www.pituitary.
org.uk/get-involved/campaigns-and-raising-awareness/
current-campaigns or alternatively call 0117 370 1316.
Desmopressin is currently a hot topic in the NHS,
so hopefully this will improve interest from NHS
staff in our campaign. This is because the NHS
has recently implemented a patient safety alerting
system which should help to minimise the risks
for DI patients being denied their desmopressin
when in hospital. All organisations providing
NHS-funded care had to have implemented this
safety alert system by 21 March 2016. This can be
found at www.england.nhs.uk/patientsafety/
wp-content/uploads/sites/32/2016/02/psadesmopressin-080216.pdf
left: The image on our front cover is an abstract painting by
Pat McBride about her early DI journey – measuring jug (water
deprivation test), hospital water jug – awful warm tap water, diet
coke and bubbles (icy cold), the ever present loo with an eye representing
the many times I’ve seen it! ■
Pituitary Life | summer 2016

4 News
■ We are pleased to announce that
the theme for October Awareness
Month 2016 will be improving
optician awareness about pituitary
adenomas. We hear of many pituitary
tumours being diagnosed through
routine eye tests. Making more
opticians aware of adenomas will help
prompt earlier diagnosis for pituitary
patients.
We will be producing an awareness
poster that anyone can take along to
their local optician. There will also be
lots of other fun awareness activities to
get involved with during October, all
geared around increasing awareness to
prompt earlier diagnosis. To pre-order
your optician awareness poster, which
will be sent to you during September,
please email campaigns@pituitary.
org.uk
Full details about the other exciting
ways you can get involved in Awareness
Month will be announced on our
website this summer and will also be in
the next Pituitary Life magazine.
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.
National Pituitary Conference, Leeds
Thank you very much to all of our
amazing speakers (12 in all) who
gave up their time on 23 April to
be involved with our Conference and
make it such a successful day. Also,
thank you very much to the patients,
their families and friends who travelled
to Leeds to join us. With 202 of us in
total, it was a busy day and a great
opportunity to meet old friends and
make new ones. Thank you also to the
research staff from Leeds Endocrine
Team who came along to run their
stand about endocrine research, and
also to The Leeds Support Group who
ran an information stand about their
group.
Our packed programme covered
new topics such as weight, diet, fatigue,
and saw endocrine specialists running
sessions about specific conditions
including prolactinoma, DI, acromegaly,
and Cushing’s. These workshops were all
really well received. Prof John Newell-
Price gave an introductory talk about
Pituitary life | summer 2016

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pituitary conditions which was a really
informative way to start the event. Our
other sessions (back by popular demand)
included younger patients and parents,
psychologist Dr Sue Jackson, and our
Adrenal Insufficiency workshop, which
this year was run by two Specialist
Endocrine Nurses - our very own Alison,
and Julie Andrew from the Leeds team.
The venue was one of the best we have
used, so a big thank you to The Hilton
Hotel staff who were so attentive and
made all our delegates feel so welcome
during the weekend.
It was a special day and a great
chance to meet other pituitary patients
in a supportive environment. Lots of
delegates commented on how useful it
was to share their experiences, and how
much they had learnt from the speakers.
From the evaluation forms, 99% said the
day had improved or partly improved their
understanding of pituitary conditions.
(A full evaluation report is available on
request).
After our Conference we held a
successful social evening in the hotel. It
was well-attended with 70 of us there,
and a really enjoyable evening. There was
a tasty two-course meal, games, a music
quiz and a disco. In the past, patients had
let us know they wanted more time to
meet others at a Conference and so we
introduced this social evening. It was a
lovely way to finish the event and a big
thank you to everyone who came along ■
Thank you to all our
amazing volunteers
During National Volunteers’ Week we like to say an
extra special thank you to our volunteers. Volunteers’
Week is an annual celebration of the fantastic
contribution millions of volunteers make across the UK,
and this year it’s taking place for an extended period from
the 1-12 June.
Over the past year, The Pituitary Foundation would never
have achieved as much as we have done without our volunteers’
help. Since this time last year we have reached a total of 120
volunteers, 9 of these being our wonderful new Volunteer
Campaigners! Volunteers help us by taking Helpline shifts,
providing our telephone buddies system, running support
groups, help with administration in the office in Bristol, and
more besides. We would be lost without them. From 1 June we
will be celebrating our volunteers on social media, and read on
for our volunteer story this year written by Alice Jackman.
With our thanks and appreciation
to our volunteers for your outstanding
commitment, from all the staff at
The Pituitary Foundation ■
Introducing Sian
Pitman, Assistant
Administrator
Sian is originally from Fontmell Magna, a
quiet village in Dorset, and has joined us after
graduating from Bournemouth University last
year where she studied MSc Events Management.
Previous to this, she studied BSc Psychology and
Sociology at the University of the West of
England and is delighted to be back in
Bristol again permanently.
Sian’s previous employment and
experience has mostly been in various
hospitality roles, the most recent being
assistant manager at a local pub. Alongside
this, she has volunteered at various charity
events and festivals. Upon joining
The Pituitary Foundation,
Sian is excited to gain a
greater understanding of
the running of the charity,
fundraising events, and the
charity sector in general.
In her spare time, Sian enjoys
baking, Zumba, and is always up
for a challenge – she’s already
very tempted by the Chepstow
Zip Slide in June! ■
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6 News
Volunteer Experience, by Alice Jackman
My son Richard (now 26) was diagnosed with
Cushing’s in 2008, operated on soon after, and
got his life back. It took seven years to diagnosis,
which was so stressful – I knew something was wrong,
but the trouble with rare diseases are that they are rarely
seen and so doctors take a long time to rule out possible
common causes of the symptoms.
Once we had a diagnosis though, we found The Pituitary
Foundation and it was amazing to be able to talk to others who
had been on the journey and
were now out the other side.
We were so grateful, especially
to Annie Bushen and the
Salisbury Support Group.
However, we then
discovered that far fewer
pituitary patients are under 30,
so there were in fact very few
peers for Richard to connect
with. This is what led us to set
up The Pituitary Foundation Young
People’s Support Group. We have
a closed Facebook page (you
can find us by typing in the
above group name, ask to join,
and then we will make you a
member), but it does mean that
it is private and nobody else on
Facebook gets to see this part
of your life.
As we are so few (23 members at the last count) and spread
all over the UK, getting together is tricky. We are now having
specific young people groups at the Pituitary Conferences, and
there are parallel groups for parents so that we can support each
other too. It is wonderful for Richard to discover other people
who could understand the problems that he was facing, he was
no longer alone. I was delighted to find other parents who were
battling with the same problems I was, and so I was able to find
solutions much more quickly than I otherwise would.
As a volunteer group coordinator, I do most of my contact
with patients and their families via telephone and email as our
group is not location specific. It is so rewarding to be able to chat
to someone and be able to point them at resources which could
then help them. Sometimes, especially straight after diagnosis,
people just need to talk. Take their fears out and have a good
look at them – finding that many of them can be left behind, no
longer needing to take up headspace.
The particular challenges facing young people on
hydrocortisone replacement lie around accidents and becoming
ill and the possibility of going into an adrenal crisis. If they are
at school, who will notice and then take the action that is needed?
The latest legislation is making it easier for head teachers to allow
their staff to administer medicines and injections (before calling
an ambulance), which means children can have less interruption
to their schooling.
We have been very fortunate to discover the support group
for Congenital Adrenal Hyperplasia (CAH) patients at Great
Ormond Street Hospital (GOSH). As all their patients are young
and face these problems, they have produced very helpful leaflets
that one can take into school.
Visit www.cahisus.co.uk for a
treasure trove of information.
Prof Peter Hindmarsh is the
holder of this website and we
are most fortunate that he is
also on the Medical Committee
of The Pituitary Foundation.
Richard and I have been able
to attend The British Society
for Paediatric Endocrinologists
conference for the last two
years, manning a stall on behalf
of The Pituitary Foundation. It
is great to be able to chat to
nurses and endos and provide
them with resources with
which they can support their
patients. Last year, Richard
was showing his photo story to
some young doctors and they
asked what difference it would have made to him if he had been
diagnosed earlier? He was able to explain how awful it felt to be
so tired and look so overweight while he was a teenager; also
how he had lost the opportunity to grow as tall as his father – the
tumour stopped him growing.
We have also represented The Foundation at support group
meetings in various hospitals, in London, the Midlands and the
West. Richard loves to share his story and other patients find it
most encouraging to see how far he has come.
Life with panhypopituitarism is certainly not dull! When
one adds in Asperger’s Syndrome and adulthood, the logistical
challenges mount up. We have experience of dealing with CCGs,
Social Services and the Education Department – if anyone is
finding they need help negotiating paperwork, please get in
touch. Our young people have a rare condition and society
has legislated that those who need help should be able to get
it – we don’t have to struggle on alone. As a volunteer I get
huge satisfaction from supporting others going through life
with similar challenges, meaning my experience can become
something positive ■
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Waving the flag for The Foundation
(Manning an exhibition stand for a day)
Steve Harris
The Foundation is often invited,
or we request space, to
attend various endocrinology
conferences and meetings throughout
the year. Many of these events are held
every year and are usually attended by
endocrinologists, endocrine nurses,
paramedics and representatives from
pharmaceutical companies.
Some of the events include the Society
for Endocrinology Update, Annual
Clinicopathological Conference and the
annual BES.
Promoting The Foundation
When we attend these events, it is a
chance to promote The Foundation and
our publications and services. To say we
have a stand is not quite correct, in all of
the events that I have covered, we were
provided with a large table, covered in a
white cloth, with two chairs.
The stands were originally covered by
Foundation staff (and still are) but over
time, volunteers are helping out more.
I’m not quite sure how I came to
be involved - I think it was at a British
Endocrine Society (BES) event that was
held in Birmingham a few years ago.
Our Head of Patient & Family Services,
Pat McBride, was manning the stand and
as I’m only 12 miles from Birmingham, I
decided to pay her a visit. I sweet-talked
my way through reception and found Pat.
I stayed for about an hour and during my
stay, Pat went for a comfort break and left
me in charge of the stand! I dealt with an
enquiry before Pat returned and I think
she made a mental note to use me at
future events!
Manning a stand
So, what’s it like to man a stand?
Obviously, Head Office will do all of the
admin work and you just need to turn up
at the venue on the day. A package of The
Foundation’s booklets and also the popup
banner will have been sent by courier
and these will be waiting on your table
when you arrive - although once, I did
have to go searching various storerooms
with a hotel employee until we found the
packages.
First job on arrival is to check in at
registration and then locate your table
and say ‘hello’ to the other exhibitors as
you pass their tables. Then you open up
the boxes and the first thing I do is to
assemble the pop-up banner and place it
to one side behind the table.
I noticed at events that many of the
other charities and organisations had
their own tablecloths bearing their
name and logo. I mentioned this in
my feedback to Head Office and a
lovely tablecloth appeared in the
box at my next event.
The next job is to lay the
tablecloth and make sure the
writing on the front is straight
and central. I always had loads of spare
cloth left flapping at the sides and I asked
a lady on the next stand how she got her
cloth to look so neat. She very kindly
came across and showed me how to fold
in the side pieces - I will always be grateful
to her for this tip.
Once the cloth is on the table, it is time
to lay out the booklets and other materials.
You can just about fit everything on the
table! When I first started manning the
stand, The Foundation would supply
multiple copies of the booklets so that
delegates could take them but now,
because of cost, only a display copy of
each booklet is provided. Although each
booklet caries a sticker on the front cover
saying ‘Display Only - Please Do Not
Remove’, I seem to spend most of my
time retrieving booklets that people have
walked off with!
Once the table and banner are set up,
you have a short breathing space before
the first delegates start arriving. Most of
these events are held in large hotels and
the large room used for breaks and lunch
is also the room in which the exhibitor
tables are arranged around the outside
walls. By the time you have set up, the
hotel staff will usually have the tea and
coffee prepared and the exhibitors take
the opportunity to get in a quick cuppa
before the delegates arrive.
500 paramedics
In a very short time, the room is full of
people and the noise is incredible! These
events often have over 100 delegates
attending and I once did one at Villa Park
which had 500 paramedics there! You
rarely get a visitor to your table in this first
break - I think the delegates are too busy
making sure they get their tea and biscuits
and catching up with people they know. As
the time of the first workshop gets near,
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8 News
the room gradually empties and
an almost eerie silence descends
- most of us exhibitors then grab
another drink before the hotel
staff clear everything away.
We now have nothing to do
until the mid-morning coffee
break and this is an opportunity
to catch up with people on the
other stands. Other charities,
such as Addison’s (ADSHG) and
CAH, also attend these events
and it is usually the same people
manning their stands. You get
to know these people well and
it is like catching up with friends
you haven’t seen for a year. It
is also an opportunity to have a look
at their publications - so many of the
endocrine conditions have overlaps with
our own pituitary conditions (emergency
hydrocortisone injections, to name one).
In the afternoon quiet time, some of us
have been known to drift off to the bar -
well, you can only sit on a hard chair for
so long!
Networking
It also allows us time to network with the
reps from the pharmaceutical companies
(no free drugs unfortunately!) and at my
last event, I picked up invitations to visit
two of the companies later in the year and
talk to their sales reps about living with
acromegaly and hypopituitarism. Oh, I
lead such a glamorous jet-setting life...
I have to be honest and say that for
much of the time, whilst the delegates
are attending the workshops, there isn’t
much to do. You see others reading or
working on laptops - I’ve even been
known to fall asleep! I usually take my
headphones and listen to heavy metal
whilst doing the newspaper crossword.
At some of the events, you are allowed
to slip into the workshops and this can
be very rewarding (although some of
the content can be too technical for us).
I had two fortunate encounters at the
last event I covered. I was talking to one
of the Pfizer reps I know well and he
invited me to come along to their extra
workshop on acromegaly after the main
workshops had finished. About half an
hour later, in the morning coffee break,
I was standing in line for my drink and
complained to nobody in particular about
my aching knees. The man in front turned
round and asked me what the problem
was - he turned out to be Robert Murray,
an endocrinologist from Leeds and he
was presenting one of the talks on bone
problems in acromegaly at the Pfizer
workshop - he also invited me along. I
found the talks very interesting and I will
certainly be asking more questions when I
next see my own endo.
Eventually, the hotel staff start setting
up the room for lunch and the exhibitors
usually get to eat before the delegates
return from the workshops - there is
normally a good choice of hot food and
sweets. Lunch is probably the busiest time
for visitors to your table.
Endocrine nurses
Suddenly, the room is full of people again
and the noise level is deafening. Once
delegates have eaten, many of them start
looking around the stands. I think it is
safe to say that the majority of endocrine
delegates have heard of The Foundation
and the endocrine nurses are the ones
who know most about our services and
publications. There are always newlyqualified
people who want to know more
about us and many of the nurses come
along to check on the latest versions of
the patient booklets. My last event was
over two days and I did so much talking
that I almost lost my voice - the first thing
I did when I got home after it was
over was to have a bowl of ice
cream to soothe my throat!
The afternoon is again a quiet
time until the coffee break, when
you often get more visitors to
your table.
Once the event is all over and
the room is rapidly emptying,
then it is time to pack up. Collapse
the banner, tape it up in its box
and attach the return address
label. Collect up the booklets and
pack them in their box, then seal
and address - at the last event, I
did this and then realised I had left
our tablecloth on the table! Open
the box, pack the cloth, reseal the box...
Then it’s time to go round saying
goodbye to the other exhibitors. The
packages are dropped off at hotel
reception for collection by a courier and
then you are free for your journey home.
So, what do you need to be a volunteer
on a stand? Obviously, you need to have
free time for one or two days and be
willing to travel. You need to have a good
knowledge of The Foundation’s services
and publications so that you can answer
questions from the delegates. It also helps
to have some background knowledge of
the various pituitary conditions, not just
your own.
Sometimes you will man a stand with
another person, sometimes you will be on
your own.
I always enjoy manning a stand and
I know that it is helping to spread
knowledge about The Foundation. I
also enjoy meeting and networking with
volunteers from other endocrine charities
- it’s like having an extended family. This
is just another way I help to support The
Foundation.
Steve ■
The Foundation is recruiting
Volunteer Event Ambassadors like
Steve, and if you would like
more information, please contact
Rosa on 0117 370 1316, or email
rosa@pituitary.org.uk
Pituitary life | summer 2016

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WAPO
Sammy Harbut, Patient & Family
Services Co-ordinator
Over the weekend of 15 – 17 April
2016, I attended the first World
Summit of the World Alliance
of Pituitary Organisations (WAPO) in
Amsterdam. The idea was for patient
groups from around the world, which
are involved in supporting patients
with pituitary disorders, to get together
as a formal and recognised body.
Diagnostic delays that create unnecessary
suffering for patients, and the differences
that exist in the provision of treatment
and care worldwide were highlighted, with
the summit paying particular attention
to acromegaly and Cushing’s disease, as
these are considered by endocrinology
professors attending, to be the conditions
most difficult to diagnose and subsequently
treat long-term.
16 different countries were represented,
with 44 delegates attending from all
four corners of the world, including
North and South America, Western
and Eastern Europe, Australia and the
Philippines. Representatives from patient
organisations and drug companies were
present, as well as endocrinologists from
Europe and Asia.
Delegates had been encouraged to
share information from their respective
organisations at the summit, so a range of
literature and materials were available to
view over the three days. I took essential
resources, fact sheets and several booklets
that The Pituitary Foundation publishes
to support our patient community, as
well as our GP Fact file and referral pads,
which I shared with others.
On Friday evening, delegates were
given the opportunity to meet each
other before the start of business on
Saturday morning at 8.30am. That day
consisted of lectures and presentations
from Prof Diego Ferone, who spoke
about new developments and treatments
in Acromegaly; Prof Annamaria Colao,
presenting about Cushing’s and improving
the lives and prospects of people
living with pituitary conditions; and
Sarunas Narbutas, a Lithuanian Lawyer
and Patient Advocate. Mr Narbutas
emphasised the need for communication
between patients, their organisations and
other similar support platforms, and for
the need for patients to become essential
partners in research within healthcare
which will help to improve their quality
of life.
Following a social event for all delegates
on the Saturday evening, business
commenced again at 8.30am Sunday.
The day began with electing eight Board
members, each with a particular remit, and
Niall Cavannagh, joint coordinator of our
Republic of Ireland LSG, was appointed
for The Pituitary Foundation. Niall has
qualifications and skills in IT which he
can bring to his role (and also a pretty
decent singing voice as we discovered on
Saturday towards the end of the evening!).
Following the election of Board members,
and formal acceptance of Governance
and Legal Entity, WAPO members began
planning activities to take forward.
WAPO has ten main principles which
complement and support the work of
The Pituitary Foundation, namely:
i) Ensure information about pituitary
disorders is collected systematically
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10 News
ii) Raising awareness
iii) Prompt and accurate diagnosis
iv) Experienced neurosurgeons to
undertake operations in specialised
multi-disciplinary teams
v) Patients to be treated within
internationally accepted guidelines
vi) Access to condition information
vii) Provide psychological support
viii) Address discrimination and social
stigma regarding physical impact of
conditions
ix) Hydrocortisone awareness amongst
emergency services
x) Conduct and support research
All participants then worked together to
develop a strategy for the year ahead, and
it was agreed that a WAPO newsletter
will be published quarterly, giving all
members an opportunity to share best
practice, significant events, involvement
in research etc., from which the world
community may benefit. I am pleased
to say my involvement for The Pituitary
Foundation will continue, as I will provide
the information from our organisation
for this newsletter. (Member countries
have been asked to think of a good
name for the quarterly newsletter, so any
suggestions would be gratefully received).
Finally, it was agreed that another summit
would be held in May 2017.
I was privileged to attend this event, and
the information circulated was excellent. I
left feeling very optimistic, not just about
the possibilities for WAPO, but also that
we in The Pituitary Foundation now
belong to a global patient advocacy body.
As a Cushing’s patient, I felt comforted
by the fact that although we may feel
isolated sometimes, in fact we share our
experiences with many others who have a
passion for improving the lives of pituitary
patients throughout the world. I also felt
very proud of The Pituitary Foundation,
for our resources, information and
Helpline support services are considered
to be some of the best - indeed others
from around the world access them, and
seek to provide the caring support services
we deliver so well ■
In memorial
Travel
We were very saddened to hear that a member, Stanley Sammeroff, from
East Dunbartonshire, passed away suddenly on 20 December 2015,
aged 61.
Stanley was diagnosed with the help of his dentist, who had noticed his jaw was not
aligning properly. His wife, Ann, told us that he was operated on by Professor Graham
Teasdale, who they both felt was amazing.
Ann and Stanley attended the Edinburgh Local Support Group, finding much
benefit, kindness and understanding from their meetings. Our sincere condolences and
sympathy are with Ann ■
Proof readers
We would like to say a huge thank you to Youlie Giovanovits and
Steve Harris, who help to proof read each edition of Pituitary
Life, plus some of our other resources. They volunteer their time
generously and are very much appreciated by us for their keen eyes! ■
One of our patients let us
know he was at Stansted
airport security a couple
of weeks ago, ready for his
short-haul flight. He told us that
he really did have to produce a
letter from his GP, to say that he
needed to carry his hypodermic
and ampoules of hydrocortisone
in case of emergency. He says he
knows that this has officially been
true since forever, but now they
really mean it.
If you are travelling and need a
copy of our template travel letter
for your endocrine nurse or GP to
complete, please email helpline@
pituitary.org.uk ■
Pituitary life | summer 2016

news Professional articles
11
What’s the difference between stress
and anxiety? By Sue Jackson
The title for this article is probably
the question I get asked the most,
so I thought it would be a good
topic for Pituitary Life. Good mental
health is an important part of our
overall health and well-being and is just
as important as our physical health.
Mental health refers to our emotional
and psychological well-being - it is
about how we think, feel and behave.
Being able to handle normal levels of
stress, leading an independent and full
life and being able to “bounce back”
from difficult situations or life events,
are all signs of good mental health.
As a way of exploring this, I’d like to
start with Dr Paul Gilbert’s work on
understanding how we feel and what
we do. We have many brain systems,
but, according to Dr Gilbert, we have
three that are particularly important in
terms of how we feel and what we do.
My drawing of Dr Gilbert’s model is
shown at right, and the explanation of
the brain systems follows after.
Importance of caring & the three affect-regulation systems
(adapted from Gilbert, 2009a)
Drive, exitement,
vitality
Head space
Heart space
Contentment, safety,
wellbeing
wanting
running away
anxiety
depression
Threat system
stress
anger
1. Threat system (also known as the
‘flight or flight’ system). This part of
your brain is very important in terms
of keeping you safe. Your threat system
will come on in response to stressors,
e.g., if you are hungry, thirsty, tired, not
feeling well, and/or in a situation where
you feel unsafe or threatened. Once it
is on, you can’t access the two other
brain systems. Effectively, you have to
do what your threat system tells you
to do. The feelings most commonly
associated with the threat system are
anxiety, anger and depression. The
threat system is exhausting to have to
live with (anger and anxiety take a lot
of energy), the bouts of lowered mood
(depression) can be thought of as your
body’s way of forcing you to rest, for
example, saving energy by reducing
your interest in the world around you.
2. Heart space (what Dr Gilbert calls
the “affiliation system”). This part of
your brain is very important in terms
of relationships both with yourself
(your self-esteem) and with others.
This is the part of your brain that
helps you to feel connected to others,
and can help you to feel safe. If you’re
feeling generally contented and just
pottering about, then your heart space
will be on. It’s the bit of your brain that
does self-soothing, i.e. it helps you to
calm down after you’ve been stressed
by something. It also comes on if
you do something nice for someone,
or if they do something nice for you.
Your heart space will not come on
if you feel unloved, unappreciated,
misunderstood, and if there is noone
to help you to acknowledge and
celebrate your successes.
3. Head space – this is the bit of your
brain that does learning, and problemsolving,
and it’s associated with feelings
of drive, excitement and vitality (feeling
‘alive’). It’s the bit that is curious about
the world and that wants to explore.
If you know any workaholics, this
is the bit of their brain that they use
the most. Too much of this system
coupled with poor self-care and/or
self-esteem and the threat system will
come on (in the form of a bout of low
mood) as a safety valve to encourage
you to pull your horns in and rest.
So, in an ideal world, the system works
like this: you’d spend a fair bit of time in
your heart space, at peace with yourself,
the world and everyone in it. When
something stressful happens (assuming
that it’s not life-threatening to you or
your loved ones, in which case your threat
Pituitary Life | summer 2016

12 Professional articles
system comes on straight away), your head
space would come on, “this is interesting,
what do we need to do here?” So during
the day you’d move between your heart
and head spaces.
But we don’t live in an idea world. And
you have, or someone you care about has,
a pituitary condition. I’m not going to get
into the medical/physiological aspects of
stress, anxiety and depression in relation
to a pituitary condition. I’m only going
to talk about the psychological aspects of
those things. I tend to think of stress as
being situation-specific and immediate,
for example, you’re about to go out
of the door and you can’t find your car
keys. Stress affects our thoughts, feelings,
behaviour and body. So if you can’t find
your keys, and you’re in a hurry, you might
find that your temperature fluctuates, or
you might feel slightly sweaty and sick.
You might start to feel upset and a bit
panicky, you start frantically looking
for your keys whilst trying to remember
where you saw them last. Anyone daft
enough to ask you what you’re doing will
likely get short shrift (possibly including
some expletives).
How we experience stress:
Thoughts
Body
Stress
Behaviour
How we experience anxiety:
Thoughts (worry)
Emotions
Source of stress
I tend to think of worry (the cognitive
component of anxiety) as thoughts
becoming a source of stress in their own
right (as shown in the illustration at right).
So in the example of the car keys, worry
(or anxiety) would be having random
thoughts about your keys during the day
at times when you don’t actually need
them, possibly associated with the need to
keep checking that you know where they
are. It can be confusing because stress and
anxiety can feel the same (anxiety affects
thoughts, feelings, behaviour and body
too) although lots of people say that the
feeling of anxiety is far more intense and
exhausting.
So you might be stressed if you’re
in a consultation with a healthcare
professional, and you don’t understand
what they’re telling you. You might be
anxious and worried if you have an
appointment coming up and you’re having
a lot of “what if ” thoughts. Having a
pituitary condition can change the way
Body
we experience our feelings, and I think a
lot of healthcare professionals may not
understand just how intensely people with
a pituitary condition can experience their
feelings of stress and anxiety.
Stress can be thought of as existing
along a continuum, with normal everyday
stressors at one end (for example, being
too hot/cold, hungry, thirsty, tired, losing
the keys), through to traumatic stress
where you witness something shocking or
difficult to comprehend (e.g. witnessing a
Stress
Behaviour
Emotions
car crash where someone dies), through to
PTSD (Post Traumatic Stress Disorder).
Traumatic stress is like PTSD, but rather
than requiring professional help it will
gradually self-correct over a period of
weeks. Traumatic stress can occur in
patients who are very shocked by their
diagnosis or treatment, it may resolve
over time, but if the experience is felt
severely enough and no-one checks the
psychological aspects of treatment, it can
become PTSD.
Pituitary life | summer 2016

Professional articles
13
Here is the list of the commonest
symptoms associated with PTSD, but not
all of these symptoms need to be present
for a diagnosis of PTSD to be made.
• Flashbacks of the traumatic event,
which may feel like you are back there
and re-experiencing the event.
• Intrusive memories, where thoughts
about the event pop into mind during
the day without being actively recalled
by the person.
• Dreams or nightmares about the
traumatic events.
• Feeling distressed when you come
across something similar, and it may
feel like your whole body is responding.
• Actively avoiding thoughts, feelings,
conversations, activities, places or
people that remind you of the trauma.
• Incomplete memories for all or part of
the event.
• Feeling detached from other people
and an inability to think of yourself
living in the future.
• Hyper-alert, looking out for anything
that may be of danger. You may also
have an exaggerated startle response
if someone or something makes you
jump.
A traumatic experience leaves the threat
system on, making it very difficult to
access the other brain systems outlined
in Gilbert’s model outlined at the start of
this article. The threat system feelings can
be very intense, and this section details
the possible feelings associated with each
one:
1. Depression. After a traumatic
incident, individuals can often feel
depressed, down and hopeless. They
find they have little interest or pleasure
in doing things. They may find it
difficult to sleep because of traumatic
memories, or they may find that they
sleep too much. They may feel tired
and have little energy. They may eat
too much or too little. People who
are depressed often feel bad about
themselves, feeling they are a failure
and have let people down. Often
they have trouble concentrating, and
may find it difficult to read a book or
watch TV. They may find that they are
slowed down, or the opposite restless
and unable to keep still. Most of all
people who are depressed may feel
suicidal and wish they were dead, often
to get away from their memories.
2. Anxiety. After traumatic events, the
brain goes into hyper-alert to look
out for danger in order to protect
you. This becomes generalized into
everyday life and soon even everyday
things may seem scary. Some people
experience extreme anxiety in the form
of panic attacks. In the severest form,
some people become so anxious that
they can no longer leave their home.
This is called agoraphobia, or fear of
fear.
3. Anger. Irritability and anger can be
symptoms of post-traumatic stress.
People may find they are more irritable
mainly because they find they cannot
cope with stimuli such as noise, too
many people, or too much to do.
This is because the brain is so hyperaroused
by the traumatic memories
that it feels like it cannot cope with
anything more. It feels overwhelmed.
Intense anger is a way of keeping away
from the traumatic memories. Being
angry prevents a person from feeling
the intense anxiety and helplessness
of the situation. While this works
for the person in a limited fashion, it
prevents them from confronting the
feared situation and also prevents the
fear reducing in a safe environment.
PTSD
PTSD is best worked through with a
professional rather than trying to attempt
a self-help route. Below are some ideas:
1. Some people find that counselling
helps them. For others talking through
the traumatic event just makes them
more traumatised than they already are.
2. Cognitive-behavioural therapy (CBT)
can work very well for PTSD. It works
on adjusting the thinking patterns that
are helping to maintain the depression,
hyper-arousal and anger and helps
people move on.
3. Emotion skills training can also help
individuals with PTSD, this approach
teaches individuals how to stay with
the emotions associated with the
event, rather than avoiding them,
thus helping the body to process
the memories and the emotions and
reducing the impact of them. There
are several different types of emotion
skills training: EMDR (Eye movement
desensitization and re-processing);
EFT (Emotional Freedom Technique);
the Sedona Method.
4. Some individuals find that mindfulness
works well for them. Mindfulness is
a meditation technique where you
learn to live completely in the present
moment by training the mind to be
able to notice, but not get involved in,
thoughts and memories as they pass
through the mind.
I often get asked if it’s possible for
a family member to be traumatised
by hearing a diagnosis, or seeing what
their loved one is going through. Sadly,
the answer is yes, and it happens quite
regularly. However, since the focus is
often on the person who needs the
treatment, family members can feel
like they are being inappropriately selfobsessed
if they say that they need help,
too. Whoever is having the symptoms,
and whatever their cause, it’s worth
seeking assistance if you’re having
difficulties handling normal levels of
stress, find your life is increasingly
restricted by strong feelings of anxiety,
and don’t feel able to ‘bounce back’ from
difficult situations or life events ■
Pituitary Life | summer 2016

14 Professional articles
Donating blood
Patients taking medication for
pituitary conditions, either for
hormone replacement or for
treatment of a condition, may or may
not be able to donate blood dependent
on which medication they are taking.
NHS Blood and Transplant (UK) have
advised us of guidelines for donating
blood for pituitary patients and the
replacements or medication they may
take.
If you wish to find out more or confirm
if you are eligible to donate blood for the
‘possible’ section if this refers to you,
please contact: NHSBT enquiries Tel:
0300 123 23 23, or visit www.nhsbt.nhs.
uk/ for more information.
Also, learn more at www.blood.co.uk
NHS Blood and Transplant operates
only in England and North Wales. South
Wales, Scotland and Northern Ireland all
have their own blood services:
Medication or hormone Donating allowed? Comments
Hydrocortisone NO NHS blood guidelines
Prednisolone
DDAVP desmopressin
NO
NO
Growth hormone Possible Depending on reason for
treatment
Thyroxine YES Taking thyroxine or
levothyroxine does not prevent
you from donating, provided
you have been on a steady dose
for at least three months
Cabergoline Possible If you are asymptomatic you
Bromocriptine
may be able to donate
Octreotide NO NHS blood guidelines
Lanreotide
Testosterone Possible Depending on reason for
Oestrogen/progesterone Possible
treatment
• Wales - www.welsh-blood.org.uk
• Scotland - www.scotblood.co.uk
• Northern Ireland - www.nibts.org
If you would like to access the full Donor
Selection Guidelines they are available via
www.transfusionguidelines.org.uk ■
Fatigue Management Sammy Harbut, Patient & Family Services Coordinator
As a member of our Patient
and Family Services team, I
take many Helpline shifts and
answer Helpline emails for our patient
community. Our team receives many
calls and correspondence from patients
who struggle with tiredness and fatigue,
resulting in a reduced quality of life.
As a Cushing’s patient, I too have
experienced levels of fatigue previously
unknown to me, and understand the
frustration and feelings of helplessness
many patients describe. However, I am
also an Occupational Therapist, and
the business of how we live our daily
lives is fundamental to my profession.
Consequently, I sought to learn as
much as possible about fatigue and how
it affects functioning, with the aim of
helping myself and other patients manage
it more effectively. The information in this
article is all evidence based, and used in
clinical settings throughout the UK. Having
delivered a presentation about Fatigue
Management at our National Conference
in April, it became clear from delegate
feedback that our patient community want
to know more about this subject. This
article briefly sets out the main principles
of managing tiredness and fatigue, however
a new, more comprehensive Fatigue
Management booklet will be available later
this year.
Quote from a Helpline caller- “Fatigue is
the one symptom that affects my life the most. It’s
the symptom that stops me doing things I want
to do and it is the hardest to cope with’’. The
unpredictable nature of fatigue makes
it difficult to manage, and may be mild,
moderate or severe.
Everything we do takes energy -
physical, mental, emotional - think of
it as ‘supply and demand’. It can be
compared to having a ‘human battery’
which has developed a fault. How we use
the energy left in the battery can affect the
symptoms of our conditions. If we can
learn to ration energy to avoid flattening
the battery entirely, we can build energy
levels up over time.
It is tempting to do as much as possible
when we are having a ‘good’ day, but this
often results in a pattern of ‘boom and
bust’ i.e. we use all our energy, then have
no option but to do nothing the following
day as we are exhausted. Alternatively, we
avoid doing very much at all, to prevent
us from becoming fatigued. However, the
human body needs activity in order to
produce energy, retain fitness levels and
Pituitary Life | summer 2016

Professional articles
15
improve mental skills. By only resting,
our bodies have nothing to do, so will not
produce increased energy- fatigue levels
rise, and more effort is required to do the
same activities.
Grading can be applied to all activities.
This involves making small manageable
changes to activity levels, and ensuring we
have a good balance of activities. If we
think in terms of an ‘energy bank’, some
activities give us nothing back - these are
often our ‘have to’ activities - the things
we feel we have to do. However, some
activities GIVE us energy, (food and
sleep are obvious ones), and so anything
we find enjoyable, fun, or provide a sense
of achievement can energise us. It is
important to ensure we have a selection
of activities which will put energy back,
for this alone will improve quality of
life. Grading can be done using time,
distance, speed, strength and resistance as
measurements, so experiment with short
periods of activity to complete a task.
Examples of this are setting a short time
for activity initially, and gradually increase
it; walk or drive shorter distances before
increasing; going slower will reduce
energy used, and walk on the flat, not
uphill initially.
Grading can equally be applied to
mental tasks we undertake, and we
often forget about internal demands for
energy. Pituitary patients frequently
complain about ‘brain fog’, memory and
concentration problems - often the result
of poor energy levels. Try setting smaller
goals for mental tasks initially- read half
a page, prioritise tasks, plan and think
ahead, and focus on one task at a time.
Use of lists, calendars, post-it notes can
help reduce the number of things our
brains have to remember - and although
they seem very simple, they could make
a significant difference to the things our
brains have to remember.
Learning to balance our activities
with quality rest time is as important
as the activity we do. Simply stopping
physical activity will not necessarily relax
us if we sit feeling resentful or frustrated
about the things we can’t do - negative
thoughts inhibit the body’s ability to
recover energy. Attempt shorter rest
periods more frequently, slow breathing,
relax shoulders and learn to manage
stress as this will reduce energy used by
the stress response, leaving more energy
for other things. Relaxation is a skill that
can be learned through practice, and it is
helpful to remember that if our muscles
are tense more energy is used, negatively
influencing levels of fatigue. Simple
abdominal breathing exercises can be
implemented into our daily routines, and
consider trying activities like yoga, pilates,
meditation, mindfulness, massage- all of
which are recognised as stress relieving.
Equally important is sleep, and
developing a healthy sleep cycle can
improve fatigue levels. With pituitary
conditions, fatigue is often not improved by
sleep, particularly if we have experienced
sleep disturbances for many years due to
hormone imbalances. Establish a good
sleep pattern - try to only sleep at night,
establish a ‘wind down’ routine (bathe,
have a hot milky drink, read, listen to soft
music). Avoid any form of stimulant -
caffeine, nicotine, alcohol, TV and other
electronic devices at least an hour before
bed, and aim to reduce anxiety. Practice
relaxation techniques, introduce lavender
into the bedroom - all these will help with
sleeping.
Finally, don’t underestimate the
power of thoughts and feelings.
Pituitary conditions change our lives, and
many of us feel loss as a result - loss of
role, employment, social activities etc.
It can be difficult to
adjust, and feelings of
frustration, anxiety for
the future and anger
are all understandable
and reasonable feelings.
However, these negative
feelings rob us of energy,
so learning to prioritise
valued activities and
accept help for other
‘have to’ activities will
help sustain energy.
Additionally, become
flexible in relation to
what is achieved in the
course of a day, don’t self-criticise, and
accept the need for a change of plan
during the day if necessary. When energy
levels are low, choices have to be made
about how to use energy efficiently.
“If you can’t change the direction of the wind,
you must adjust your sails.’’ ■
Pituitary Life | summer 2016

16 Professional articles
Weight issues Pat McBride, Head of Patient & Family Services
This article is based on my recent
presentation at our National
Conference, April 2016 in Leeds.
Weight issues can be frustrating and
common amongst pituitary patients. We
hear about this issue so often on our
Helplines and within the Local Support
Groups. I also know from personal
experience how difficult it can be. Other
patients’ quotes (Needs Analysis 2006):
“I dream of what I was like …I was so small,
petite, thin, and very active. The hormones changed
me so dramatically, facially as well and structurally
my bones and everything got bigger, so there was a
dramatic change that was never addressed”
“I put on 5 stone, in 2 years, very expensive for
clothing. Very embarrassing.”
“Obviously the public perception is that I’m off
eating McDonalds every 5 minutes. That the
reason I’m fat is because I eat too much.”
Typical questions we ask and things we say:
• Why have I gained (or cannot lose)
weight?
• Have I got hypothalamic damage?
• Are my hormones to blame?
• But I can’t exercise anymore!
• I don’t eat a lot!
• I’m always hungry!
The hungry hypothalamus: If you do
have hypothalamic damage it can be more
of a challenge to lose some, if any weight.
The hypothalamus, which sits just above
the pituitary, controls our hunger and
appetite and so people with hypothalamic
damage often experience markedly
increased, or occasionally decreased
appetite. The hunger and voracious
appetite that can persist even after large
meals can be very challenging for both
individuals and their families to cope with.
Additionally, some people with
hypothalamic damage experience
profound sleepiness and slowed
metabolism, loss of thirst, disruption of
sleep and changes in mood. Together,
many of these complex and disruptive
effects may contribute to considerable
weight gain that is hard to reverse.
Maintaining and improving your wellbeing
is important.
Hormones: You may have been told that
your hormone levels are fine, in normal
range. Generally, discrepancies of hormones
which can affect weight gain include:
• Over-replaced steroid
• Raised prolactin
• Over-replacing of desmopressin
to retain fluid (1 litre of water = 1
kilogram)
• Insufficient thyroxine, growth
hormone, testosterone and oestrogen
Pituitary patients function well with
mid to high end of range T4, so if you
are on thyroxine, this is worth checking.
However, even when pituitary hormone
replacement has been fully optimised, it
still appears difficult for some people to
control their weight and regain their full
former quality of life.
There are additional factors that may
hinder a full recovery: pituitary patients
might suffer from long-term inactivity or
possible disability, unemployment or early
retirement. These significant changes in
lifestyle and activity that can result from
pituitary disease can often result in weight
gain. Partial loss of energy may also persist
even after full hormone replacement, and
be sufficient to result in weight gain from
inactivity. Whilst different people respond
differently to stress and depression, some
will tend to “comfort eat” and steadily gain
weight. A number of patients can have
very considerable changes to their lives
that have occurred as a result of pituitary
disease, and this is usually quite sufficient
to lead to significant weight gain despite
adequate pituitary hormone replacement.
Did your endocrinologist know you
before your diagnosis and treatment? You
may have a different endocrinologist, or you
suffered quite significant weight gain before
diagnosis. Weight gain might have been fairly
quick in the weeks following your surgery.
Maybe it’s inadvertently assumed you’ve
always had a weight problem, or that you
are eating excessively? I gained almost five
stone in four months following my surgery
and as my endocrinologist had changed, the
new one didn’t know me when I didn’t have
weight issues. I took along a photograph of
me some months before my surgery – he
was shocked. Replacements were tweaked
immediately and these definitely helped me
shed some weight and to feel better.
My before and after photos: Above; this was
taken two months before surgery in 1986.
Below; this one was of me, six years after surgery.
Pituitary Life | summer 2016

news Professional articles
17
Exercise: No doubt this can be
challenging. To take a short walk may be
beyond reach for some. For those who feel
more able, gentle, slow moving around is
fine – a bit each day. A 10-minute walk is
five minutes out and five minutes back –
so be realistic about energy limits. Jogging
on the spot? A hospital dietician I was
referred to told me to start exercising by
gently jogging on the spot in the house,
a few times a day! It looked more like
painful hopping from one foot to the
other, but over a few weeks it became
easier and enabled me to start walking for
short periods, then swimming each week.
But I don’t eat a lot, or, I’m always
hungry: If you’d have seen my food diary
I handed to the same dietician... excessive
steroids at that time made me eat huge
amounts, and food I never ate before,
plus lots of diet coke (DI) as I thought it
quenched my thirst best – wrong!
Keep a food diary for a week or two.
Be truthful and include everything, even
drinks. Add on any activity you do each
day. It’s a good method to help you and
your GP or endocrinologist see what you
are eating and not to judge you.
Other tips: The right amount of sleep
is important. Too little and you’ll want to
eat more in the day, commonly carbs and
sweet food.
Check that your last dose of
hydrocortisone isn’t too late. Make sure
your thyroid levels are checked, especially
if recently starting growth hormone. Take
your thyroxine early morning, at least half
an hour before your other replacements
or medications.
Slimming clubs can and do work –
motivation from others each week and a
regular weigh in. A few years ago I went
to a slimming club and was pleasantly
surprised. Without doubt, some weeks
were agony at weigh-in; a pound or two
on would feel demoralising, especially
when you’d tried so hard. Stepping on
the scales each week was certainly a ’hold
your breath’ moment but each successful
weigh-in kept us on track. I still follow
some of their recipes as I enjoy them.
The word ‘diet’ can be filled with dread
and can feel quite insurmountable, so,
use any word or phrase that you prefer
instead, such as food options or “I’m
making small changes”.
Over time, these small changes can
become normal choices and preferences.
If you say I’m having a treat, this could
make you feel guilty and go off track.
Better to say you are choosing something
different – on a few occasions.
A good tip is to use smaller plates. Don’t
aim to finish everything on your plate – eat
slowly, practice mindful chewing. Don’t
watch TV, look at your smart phone or
read whilst eating - concentrate on each
mouthful.
To sum up: A common mistaken belief
is that there are short term treatments
and solutions and that weight loss will
materialise within days or a few weeks.
The reality is that weight is slow to be
gained, usually over many years, and it
is correspondingly slow to be lost. Not
everybody is able to control weight
successfully in the presence of pituitary or
hypothalamic diseases, but those who are
most likely to do so, tend to be people who
have found it possible to put in place more
long term, permanent changes in activity,
diet and lifestyle. It would probably help
patients if these problems were more
widely acknowledged by endocrine teams.
Overwhelmed? Give yourself time. Be
kind to yourself first and foremost. The
Foundation is here to help too and our
updated Weight Issues booklet with much
more information on this topic will be
available shortly.
The Healthy Portion Plate above
was developed with NHS dietitians and
is used within the NHS to help their
patients learn about appropriate portion
control and live a healthier life. More
information can be found here www.
healthyportionplate.com ■
Pituitary Life | summer 2016

18 patients Patients’ stories
Jo’s story
My journey started when I
was 14. I had only ever had
one period and I found the
courage to see my GP about leaking
milk from my breasts. He told me
this was normal, that it was just my
hormones settling down.
In 1994, I was 22 and working at an
engineering company. I was crouching
down, painting a security cage and when
I stood up I had two wet patches on my
tee shirt. I knew that was not normal, I
was also having, what I can only explain as
“face ache” and my eyesight was appalling,
I was always bumping into the side of the
door frame.
MRI in the back of a lorry
I went to the GP, (which was a different GP
by then), who sent me to The Conquest
for blood tests. When these results came
in, he referred me to the endocrinologist,
Dr Gorsuch, who said as my level of
prolactin was so high he was thinking I
may have a pituitary tumour. He put me
on bromocriptine for the meantime and
referred me to have a MRI scan. As, at
that time The Conquest did not have a
MRI, it was carried out in the back of a
lorry. I was petrified and sobbed my way
through the scan. When the results came
back Dr Gorsuch referred me to The
National in London to Mr Powell’s team,
including Mr Conway, endocrinologist.
Brain surgery
I remember going up to see Mr Powell
on a Tuesday - he had me booked in for
the following Tuesday. I had never had
surgery, broken a bone or had a stitch –
so to be going to London to have brain
surgery – I was petrified. I was prepped
for surgery and was shaking so much the
bed was rattling; the nurse questioned
whether I had had a pre-med!! The op
went well; I came round and was in shock
with silver blankets to stop me shaking.
Mr Powell said he had got most, if not all
the tumour out. I was in The National for
nearly two weeks as I did not recover too
well, having been put back in observation
ward. When I was able to get out of bed
and wipe down my bedside cabinet I was
allowed back on the ward, to the cheers
of my fellow ‘inmates’. The bungs came
out – what an odd feeling that was.... After
six weeks I was fully recovered.
I mentioned to Mr Conway that Steve
and I wanted to start a family; we were
advised this may not happen due to my
hormones. It was felt IVF would be the
only solution for us, and it was agreed
to give me a few rounds of (intrauterine
insemination) IUI. We found this
incredibly intrusive, travelling up to the
Elizabeth Garratt Anderson weekly, to be
scanned and given medication to inject
to stimulate my ovaries to produce more
eggs. I responded well to the medication.
My partner had to ‘give a sample’, which
I had to walk across the road with nestled
in my bra to keep warm. This was then
inserted into me via a long tube. This was
done four times and was unsuccessful. It
was agreed to try another cycle, which
I did not respond well to. Christine, the
Fertility Nurse, asked Mr Conway to
investigate, and it was discovered that
the tumour had returned. So, in 2000 I
was back in The National dreading the
surgery. I was not happy they had to shave
a bit of hair off!! As technology had
moved on so much, I must have been one
of Mr Powell’s’ guinea pigs. The surgery
went well; I woke with an incredible
thirst, which subsided after a few hours. I
remember I could not sleep and my mum
had left me some cheese sandwiches – I
asked if I could eat them and was sitting
in bed eating and reading at 2 am. I was
Pituitary life | summer 2016

Patients’ stories
19
only in hospital for a few days – no bungs
– yippee. The treatment I had at The
National was I would say, outstanding –
the nurses, the cleaners and catering staff
were all warm and welcoming.
Pregnancy
It was decided that I would have
radiotherapy to stop it recurring again.
This was done at Middlesex Hospital in
London; a mask was made and I travelled
up every week day from East Sussex for
six weeks. As this was around April/
May there were lots of Bank Holidays
so it took longer than six weeks. As it
took a long time to get me ready I was
the last patient of the day, so did not
get blasted till about 4 pm. I found this
tiring, maybe the travelling did not help
– but most evenings I would go for a run
along the seafront to blow the cobwebs,
think, oh and train for the Hastings Half
Marathon. I was upset about losing my
hair in patches on the sides and top of my
head – where the radiotherapy was blasted
into. This soon grew back and we were
ready to get back on track with starting
a family. London transferred my care
to Dr Gorsuch, who referred me to the
local gynaecology for fertility treatment. I
was given two cycles of IUI, which were
unsuccessful. I was devastated; as a child
I had played with dolls and always wanted
to be a mummy. Steve and I opened up
a savings account with the password
IVFIVF. Two months later I discovered I
was pregnant. I had an elected caesarean
as it was not recommended that I push –
“too posh to push, I say”.
My son, Reece is now 12 and is
extremely precious to us and our
family. 16 years on, I take Prempak-C,
levothyroxine 75mg, hydrocortisone
20mg, vitamin D 1000mg and daily
injections of growth hormone 0.3mg.
My skin is dry, my hair is dry, my face
is puffy and I get tired easily, I am very
lucky Steve, (my now husband) is very
supportive and understanding as is my
mum, both of whom I would not be
without or have completed this journey ■
Leila’s story
Hello, my name is Leila. My life
was very normal up until 2013,
the year I turned 25. I visited my
GP a lot through this year complaining
of severe headaches. After every visit I
felt silly going, as I got told the same
thing every time; I was overweight
which caused my high blood pressure,
which led to a headache. Painkillers
were prescribed every time. I tried
everything to shift the weight, it just
wasn’t budging.
Took myself to A&E
Come the end of the year, I had had
enough so I took myself to A and E
who were just going to send me away
as well, but I refused to leave until they
investigated further. After two CT scans
things weren’t looking good, so I was
rushed down for a MRI scan. I was very
confused as to what was going on as were
my family I had around me. A growth on
my pituitary gland!
Tears ran down my face. This explained
a lot as to how I was feeling - tired,
depressed, stressed, a big weight gain, lots
of aches and pains, blurred eye sight and
high blood pressure.
Just before I got diagnosed, I was
working full-time and bringing up two
young children on my own, so my biggest
fright was for them. I had a partner but
we split at the beginning of the year as
times were getting hard, I do believe this
was because of my condition but at the
time we didn’t know anything was wrong.
Cushing’s syndrome
I went in for surgery within a couple
of days and had it removed; this was a
success. Whilst in hospital recovering,
a member of the endocrinology team
came to visit me and diagnosed me with
Cushing’s syndrome. A very rare disease.
It took me a while to get my head
around this and to understand it. I was
put on a lot of different medication to try
and control this. As I left the hospital I
got on with life thinking it will soon be
over and I’ll be back to my normal self. As
the New Year crept upon us, things were
looking great, I was starting to feel better.
One random evening I could not sleep,
suffering from a very bad headache and
the emergency services were called.
Another trip into hospital with a lot of
pain relief, another scan – and not good
news. My growth had come back, only
this time it was pushing against my optic
nerve causing my right eye to shut. As the
time went on I began to lose all my feeling
on my right hand side.
Once the pain was under control
the doctors were able to look at things
properly and talk to me. They booked
me in to have radiotherapy; I had a shot
of this every day for six weeks. This was
very exhausting so I had to take time off
work. Results of this were fantastic; it had
shrunk my growth and I was back on the
mend again.
12 months of weekly check-ups
I had now realised that this is a long-term
illness so I decided to make contact with
The Pituitary Foundation. I needed to talk
to people who have experienced it as me
and my family struggled to take it all in.
Best thing I had done.
After 12 months of weekly check-ups
my cortisol levels were not dropping,
changing medication and trying
different dosage just wasn’t working.
The medication I took caused me to get
gallstones so I had them removed in 2014,
only a small operation so was home the
same day.
In 2015 I had a holiday to Mexico
booked; my daughter and I were
Pituitary Life | summer 2016

20 Professional Patients’ stories articles
bridesmaids for my friend. Something to
look forward to. Unfortunately this didn’t
go ahead as I fell poorly again; I knew I
couldn’t travel that far feeling like I did. I
cancelled the holiday of my own choice.
Once again I was in hospital having the
same surgery to try and remove more of
the growth, this time it wasn’t a success.
They had to act fast as things were failing
to work and my condition was worsening.
I was put on a very strong dose of
medication which reduced my cortisol
levels very fast. Great that it worked but
it was short-term.
Another small growth
I was due another MRI scan just for a
check-up. Just when I thought things
couldn’t get any worse, I was wrong.
They had found another small growth.
It was only tiny but they wasted no time
treating it as they didn’t want to take the
risk of it growing. I went in to have more
radiotherapy but this time it was only one
shot which lasted about 30 minutes. This
took place just before Christmas 2015, so
I am currently waiting for another scan to
check this.
Christmas in hospital
Their last option for me was to have my
adrenal glands removed; having these
removed would mean I would be clear
of Cushing’s syndrome. Although the
doctors went through all the negatives
about this surgery it didn’t bother me;
I just wanted them out. Christmas Eve
came around and I was in hospital once
again having more surgery. After a seven
hour operation, my adrenal glands were
gone. Spending Christmas in hospital
wasn’t all that bad, my family and both my
children came to visit me. We celebrated
our Christmas when I was well enough.
‘Home sweet home’ on Boxing Day. I
took a while to recover after this operation
but was getting better as each day went
on. All the time I took off work meant I
lost a big chunk of money, so the sooner I
could get back to work the better.
I am now 27 and starting to feel more
my age. My two young children have
coped so well watching their mummy
going in and out of hospital all the time.
They became very upset with this but all
the support from my family and friends
was a great help. I could not have done
this on my own. I would like to mention a
massive thank you to all my friends, family
and The Pituitary Foundation for all your
help and support.
Also, my sister Sophie has chosen to
run the half marathon on 17 April 2016,
to raise money for The Foundation. She
has trained very hard to do this and I am
very grateful for all her hard work.
I would also like to thank Pilgrim
Pasties not only for their sponsor but all
their support and putting up with me as
an employee.
This has been a very big challenge in my
life and I will continue to challenge it if I
need to. A pituitary illness is very hard to
deal with but think positive as it really helps.
Be firm, be strong, get help and be happy ■
Wendy’s story
Hello (g’day) from an unseasonably warm New
Zealand.
It may seem a bit odd me writing this from a small country
on the other side of the world, but without a pituitary condition,
I wouldn’t be here. I’m 44 years old now, a registered nurse both
in the UK and NZ, a mum to two children, Lucy (13) and Ben,
two cats and three sheep.
My story starts on 25 July 2007. That day, my beautiful little
boy was born, a healthy seven pounds. Covered in hair, we called
him Ben but he was known as ‘funky monkey’. As my husband
and I sat having some tea and toast post-delivery, I got the worst
feeling I’ve ever had. The overwhelming feeling that I was going
to die and to be fair, I nearly did.
Probably be dead
I was lucky; my husband Simon’s a GP. If he’d have gone out to
use the phone as he’d planned to, I’d probably be dead. But he
didn’t; I told him to take Ben and that’s the last thing I remember
for a while. I came to and heard Simon shouting at someone
“what are you going to do about it…?” My blood pressure was
very low; I couldn’t see but I heard it all! Too much knowledge
can be a bad thing.
When I came around again a team of medics surrounded me
and the place looked like there’d been a big emergency, bottles of
IV fluids, blood bags, all over the place. I wound up in Intensive
Care with strep B septic shock, low blood pressure and for a
while, questionable survival chances. But I did, all thanks and
Pituitary Life | summer 2016

Patients’ stories
21
credit to their wonderful care, attention (and wicked sense of
humour)!!
When I got home however, things weren’t good, night feeds
were awful; I remember crawling on all fours half dazed back
to our bedroom. I couldn’t feed Ben, my milk didn’t come in.
By chance Simon was having a chat to a colleague about my
problems, she suggested I could have Sheehan’s syndrome and
she was spot on!
Fast forward several months and years, I felt like I was on a
piece of elastic tied to the hospital. The nurse specialist and my
in-laws were invaluable; I can never thank them enough.
Looking back, we went through all the stages of chronic
disease adjustment they teach you about at Nursing School; I
resented the steroids, the condition and life.
I was told I will never be long-lived; the shock had left me
physically older than my biological age. I could never work shifts
or full-time again. What did he know I thought, but having tried
it even here many years later, I admit he (and Simon) were right,
but 35 hours a week Monday to Friday is a good compromise!
Strain takes a heavy toll
The strain of it all took a heavy toll on Simon and the kids. Lucy
had just started school. Simon was a full-time senior partner,
husband, father and now carer to a wife who repeatedly collapsed
until I started fludrocortisone.
But it wasn’t all doom and gloom. We’re a stubborn and
determined couple. Simon supported me to achieve my life’s
ambition of becoming a senior sister (nurse specialist), in the
community. I took the chance to repay the debt I owed to those
who’d helped me, by helping others with (different) chronic
diseases. I passed my nurse prescribing course, and got a 2:1 BA
(Hons).
Moving to New Zealand
It was a holiday down under however, that changed the course
of our lives. Simon decided a move to NZ would be good for all
of us. So move we did. Reluctantly.
The hydrocortisone is different (5mg only), there’s no Pituitary
Foundation or local specialist nurses; you pay to see the GP and
there’s a nominal charge for prescriptions; but there is an expert
endocrinologist.
He started me on thyroxine (I lost two stone) and explained
everything again, not that that hadn’t happened before but I
wasn’t prepared to listen until then. All was stable again for a
long while, I got a dream job overseeing Quality, Safety and Risk
in 2013 at a local hospital. Simon and the kids settled in well,
Ben’s now a firm All Blacks supporter.
I tried minimal steroids again, but low steroid levels make me
very, very grumpy. It nearly cost me my marriage, so I took more
again and all was well. Some of us nurses are terrible at taking
advice!
But before Christmas 2015 I thought I’d have to give it up. I
slowly became weaker, increasingly tired, I looked terrible and
drawn, and was by my own admission horrible to live with in
Wendy & Ben
spite of taking double steroids for weeks. One Sunday night
I became unbelievably thirsty. As I’m not a big drinker, this
was not normal. After testing for glucose was negative, I was
admitted and later diagnosed with diabetes Insipidus. My 24-
hour urine test, collected 10 litres..!!!
Adding a nose spray seemed a minor inconvenience to what
I’d heard disparagingly described as ‘some weird syndrome’
by a casualty nurse. This new rare and “interesting” condition
excited the nursing and medical staff! It’s autoimmune driven
luckily; the initial prospect of it being a pituitary tumour was a
very dark time in all our lives.
Making the most of any situation
If we’ve learnt one thing from all this it’s that you have to make
the most of any situation good or bad. A mantra our kids are too
young to appreciate yet. Ben doesn’t remember much but Lucy
is quite aware that her mum gets very ill; hospitals don’t faze her
at all and she wants to be a pharmacist or doctor. I’ve now got
to teach her how to do injections so that’ll be of benefit!
Yes I’ve got a hidden disability and it will foreshorten my
life. But with a few tablets, a nose spray and the support of my
family is all that it takes to keep us going. I consider myself very
lucky indeed ■
Pituitary life | summer 2016

22 Professional Patients’ stories articles
Alenka’s story
I
am a mother-of-one. It doesn’t
sound like a remarkable statement.
But for a woman who was diagnosed
with Cushing’s disease over ten years
ago, it feels quite extraordinary.
I first noticed something was different
about me at the beginning of secondary
school. I had always been extremely
active, captain of my school teams, a
player in Chelsea Juniors Football Club
and a county skier for my local borough.
Despite my high levels of activity, my
weight was only increasing. I developed
what felt like a tyre of fat around my
midsection, pads of fat on my shoulders,
plump cheeks as well as breakouts on my
face and back. Adding insult to injury,
I began finding excess hair on my neck
and back. One of the boys at school
one day, when I was about 15, said I had
“chipmunk” cheeks – he was not being
nasty or bullying me, he was trying to
be funny and it was said in a friendly,
jokey way. But unfortunately it hit a nerve
(probably because it was true). I have
never, to this day, thought they looked
normal. All this would be hard for any
woman. But as a teenager, it felt like the
end of the world.
I stopped growing
My symptoms could have been caused by
a number of things. Initially, my family
thought I was buying unhealthy snacks after
school, but I was actually quite a healthy
teenager. I think the combination of being
in my teens and getting my independence,
along with adolescence meant my symptoms
could have had other explanations. Was
I depressed and comfort-eating? Surely
puberty could not be this bad? Why wasn’t
it affecting the other girls in my class in the
same way? Spotty, overweight and hairy –
not to mention short (I’m just shy of 5ft
tall) no one seemed to notice that I had
stopped growing – I imagine everyone
thought I was STILL growing and would
eventually catch up.
None of the guys at school were
romantically interested in me. I always
Alenka before
felt like a bit of a joke to the guys - I was
their “friend” but they never considered
me more than that. I had a bubbly
personality and was relatively confident
on the outside, so I survived at school
and had friends. But behind closed doors
was another story. I was miserable about
what was happening to me. I felt like I was
fighting a losing battle to be the person I
wanted to be.
Finding a solution
Luckily, my amazing family stopped me
from falling into the depths of my misery.
I remember a particular shopping trip
with my mum - she was trying to cheer
me up by treating me to some new clothes
as nothing seemed to look nice, but my
awkward body shape meant that nothing
looked how I felt it should. The whole
expedition only lasted an hour and we
ended up sitting in the park, me in floods
of tears. My parents were eager to help me
find a solution, and they were able to guide
me through the minefield of specialists
and medical terminology. My father took
me to a colleague endocrinologist, and I
was diagnosed with polycystic ovarian
syndrome (PCOS) and put on metformin
and the pill. The medication helped a
little, but largely my symptoms were still
there.
My diagnosis
My next illness was the one that eventually
led to my diagnosis. An agonizing pain in
my side had me visiting my GP twice in
one week. Having ruled out appendicitis
at the first visit, I was told it was bad
period pains. On the second visit, now
vomiting and still in pain I still did not
have a diagnosis. My parents, who always
knew it was not appendicitis, decided
to take action and took me to see a
gynaecologist with no success. The pain
was acute and I was in agony but finally
an ultrasonography technician made the
diagnosis when she saw a small kidney
Pituitary Life | summer 2016

news Patients’ stories
23
Alenka and Adam after
stone. The stones were removed with a
number of painful lithotripsy sessions, but
over the next couple of years I continued
to develop bigger kidney stones that had
to be removed surgically. I remember
being put on a special diet and having to
list all my foods for a few weeks to make
sure the kidney stones were not caused by
the food I was eating.
I mentioned that my dad was a doctor
– an endocrinologist, no less – and it was
thanks to his professional and personal
curiosity that he read about a connection
between all my other symptoms and
kidney stones. He could not understand
why someone so young should have
so many kidney stones! He consulted
colleagues and indirectly, the possibility
of Cushing’s disease was raised for the
first time. I was reinvestigated and I was
finally diagnosed with Cushing’s disease,
the condition associated with excess
cortisol, produced by both adrenal glands
as a result of overproduction of ACTH
by a small growth in the pituitary gland.
In retrospect, this was obviously the
reason for my puffy cheeks, my weight
again, the excess fat on my stomach, my
excess hairiness and irregular periods, and
my stopping growing early. By this point
I was actually relieved to get a diagnosis.
Now around 19 years old, I went for
a week of tests at St Bartholomew’s
Hospital. I remember receiving a phone
call from a top post production company
for a temporary position as a “runner’.
It was an amazing opportunity for me
and I was devastated that I had to turn
it down. The tests at Barts reconfirmed
Cushing’s disease, and I had my first
transsphenoidal pituitary operation in an
attempt to remove the microadenoma,
the minute tumour in my pituitary. The
first operation was unsuccessful, as was
the second by a different surgeon.
My own iPhone app
I completed my degree in computer
animation, graduating with a first, and
landed that production company runner
position I had missed out on, which turned
into a full-time job. I met Adam through
work, shortly after my second operation.
We fell for each other just after I had my
third operation - so he has truly seen me
at my worst. He has been an absolute rock
and took me on with all my problems and
health issues and embraced learning about
the condition and its management. In fact,
he now probably knows more than most
average doctors. True soul mates take you
on with all your baggage!! He even used
his skills as a software developer to build
me my own iPhone app to help me log my
hydrocortisone doses as I kept forgetting
to take my medication. The app was later
to become iCortisol.
The options offered to me at that time
all seemed pretty bleak for someone of
my age - drugs with potential side-effects,
or the removal of both my adrenal glands
with replacement hydrocortisone and
fludrocortisone for life and the possibility
of Nelson’s syndrome with excess ACTH
and effortless tanning. I hated the idea
that I might become tanned! It was quite a
coincidence for me to learn but my father
had worked with patients with Nelson’s
syndrome, (this rare consequence of
Cushing’s disease) when I was a young
girl. Or, I could have radiotherapy to
my pituitary with the likely side-effect
of losing all my pituitary hormones and
becoming infertile, which was rejected
outright. If nothing was done, my
Cushing’s disease would result in reduced
life expectancy, and complications from
thin bones (one bone densitometry test
had suggested I already had thin bones),
diabetes, weakness, weight gain and high
blood pressure. And all of this would
affect the quality of my life and my
fertility. The most important thing to me
was to have kids one day.
Fear of infertility
If I’m honest, I stopped listening in
doctor’s appointments. Information went
in one ear and out the other. I could not
believe that we had got to this point -
and how I was now having to make lifechanging
decisions that might end up in
my being infertile. Luckily my Mum and
Dad were superstars and always were
there to re explain things to me in a way
I could understand and helped me stay
positive moving forward.
Two transsphenoidal hypophysectomies
is as much as most people have, and it was
my father who insisted that I ask Mike
Powell to review my case and consider
the option of a third operation. “If there
is something there that can be removed
to help you, then, and only then, should
you have a third operation” is what I
remember him saying. He insisted on a
3D Tesla MRI scan and markers being
used so that he could identify at operation
what was identified as residual pituitary
tissue which he felt was the reason for
the persisting Cushing’s disease. I was
lucky that I felt confident in him and
Pituitary Life | summer 2016

24
Patients’ stories
able to express my fears about losing my
fertility as a result of the third operation.
It was a risk I was willing to take - I needed
some kind of hope! It seemed funny that
although my pituitary was the cause of so
many problems I wanted to keep as much
of it as possible. I signed away my pituitary
in the consent form, looking Mike Powell in
the eye. Little did I know that it is not that
easy to tell bits of pituitary that make
ACTH from those that make other
hormones during operation, more so
through the scar tissue and altered anatomy
of the previous surgeries - and it is just
as well that I did not know or I probably
would not have gone through with it!
Succeeding in a difficult case
On the first day after my operation, my
cortisol level was still not low enough -
indicating that the operation had failed.
I remember his distraught face - and of
course we were all devastated. “Let us
see what tomorrow morning’s cortisol
is before we rush to conclusions” - he
said. Next morning, he tried to look
non-committal but really could not hide
his delight at succeeding in a difficult
case. Guess what! I had very low
cortisol levels, and my microadenoma
had been successfully removed! Mike
had successfully removed the tumour
while still leaving me with enough of my
pituitary gland to keep going.
I could not have imagined a better
result. I still had thyroid function but
now needed regular hydrocortisone and
growth hormone.
For some years after this third
successful operation, I was still apple
shaped with large central obesity. I have
been helped considerably by liposuction
which although my GP was incredibly
supportive and helped me apply on the
NHS - I had to pay for myself (my parents
helped significantly) - there is not yet much
experience on the NHS of liposuction
and Cushing’s. It was one of the best
things I ever did. Having so much less
fat around my waist helped reignite my
love of exercise, boosted my confidence
and encouraged me to take better care of
myself. I now use Plenadren instead of
the usual hydrocortisone replacement and
over the years am slowly losing my excess
weight and getting back to a place where I
am more confident about the way I look.
We knew having kids might prove
difficult but it always left a question mark
over my head. The most frustrating thing
is going to the doctor and asking the
question when you are single and then
being told that “there is no point thinking
about it until you need to”.
My father had also warned me that it
might be difficult but not impossible.
Secretly I always felt they were hiding the
fact that I would not be able to have kids
from me or protecting themselves for one
day maybe having to tell me bad news.
Finally, we decided to go to the doctor
and tell them we were thinking about
starting a family – we just needed some
answers. Now aged 28, I didn’t get periods
and it was not clear from a scan if I was
even ovulating. That said, my doctor was
positive, telling me there were many ways
to help and that over the next five to ten
years, we might get a baby somehow. Nine
months later, our daughter was born!
Now almost two years old, she really
If you would like to tell us about your
pituitary journey, for a future edition
of Pituitary Life, please contact
pat@pituitary.org.uk
Families and friends are
also very welcome to
contribute too.
does feel like a miracle baby and has made
everything we have all been through worth
it. I would not be the same person I am
today without having Cushing’s disease -
the journey has taught me a lot and helped
to mould my personality.
I have written this because I want others
to know that sometimes the journey is
bleak when the diagnosis is not made
for some years, or the treatments fail, or
doctors fail to understand the profound
psychological effects that a changing
appearance and blighted dreams can have
on a young person. Sometimes, and I hope
it is the same for you, it turns out well. It
is now eight years since that last operation
by the amazing Mike Powell. I finally feel
more confident about my appearance,
I have a devoted partner, my amazing
family and our wonderful daughter who
keeps us busy and endlessly entertained.
While this condition has been a long,
scary, uphill struggle, I believe I treasure
these seemingly simple pleasures more,
because I was once forced to consider
a life without them. Cushing’s changes
you. But in this light, for the better ■
Pituitary Life | summer 2016

Raising awareness
25
Running for pituitary
awareness!
April was a very busy month
with lots of people taking on
the challenge of running a
marathon. We had people running
both the London and Brighton
Marathons and we also had countless
people taking on half marathons.
These runners varied in ability but the
common denominator was that each
and every one of them was determined
to complete the challenge to raise funds
to support pituitary patients, and every
single one of them achieved their
objective! This proved that anything is
possible if you put your mind to it.
One of our amazing runners was Adam
Piggot. He ran the London Marathon.
Here’s what he had to say:
Having lost two months of training in
February and March due to a torn calf
muscle, I knew that it was going to be
hard but I was always sure that I would
finish. I started in the last 500 of the
39,000 to start and I was only yards from
the giant doll and one of the four rhinos!
Anyway, the atmosphere was amazing and
everyone was in great spirits.
It was obvious from the start that the
support was going to blow me away. The
cheering never stopped. I had been warned
that in the Docklands area it goes quiet and
you feel a bit down. Well, not a bit of it.
Great North Run
The crowds were thick and loud for all of
the run. I must have had “Tango” called
out a couple of thousand times. The British
public were so generous with their support.
Sadly, my right knee blew at mile six and
my left quad had to take the strain for the
next 20 miles, so as the miles ticked by the
pain grew. However, the crowds and the
occasion without doubt pull you through. I
was also spurred on by some very humbling
sights. Of course the crowd play a huge
part for the whole day, they were all so
kind and encouraging and of course giving.
However, the runners and the personal
reasons for their running brought tears to
my eyes on many occasions. The strength
of will by some runners was incredible. As
I said... very humbling!
I was spurred on by the love, support
and generosity of my gorgeous and
long-suffering wife Katie, my family and
friends and of course with the pride of
representing The Pituitary Foundation.
However, most of all I was driven on by
the strength my daughter, Amy, showed
when she had her two operations (two
years apart) to remove a pituitary tumour
and again when it grew back. At the time,
she was just 17 years old and she never
gave up and she never complained or said
“why me”? The Pituitary Foundation was
very supportive to me at a time when I
needed reassurance. It is a small but
extremely worthy charity and one that I
was very proud to support on the day.
I pray that the charity grows and that
funding for research will continue. Amy
has had a remarkable recovery and she is
utterly beautiful on the inside and on the
outside! We are very lucky, and a day never
goes by without me realising this!
If anyone would like to support The
Pituitary Foundation by taking on a challenge
then I’d encourage you to do so. The support
from the very start was excellent and I felt
honoured to represent them.
If anyone reading this would like to
make a donation – my page is www.
virginmoneygiving.com/adampigott ■
The Great North Run is one of the most iconic races
in the running calendar and is a must for any running
enthusiast. If you would like one of our Golden Bond
spaces this year then please e-mail jay@pituitary.org.uk or
call 0117 370 1311. There is a £35 registration fee and we ask
for a minimum sponsorship of £350 ■
Pituitary Life | summer 2016

26 Professional Raising awareness articles
When: Saturday 15 October 2016
Where: Millennium Mayfair Hotel, 44 Grosvenor Square, London, W1K 2HP
Price: Individual tickets cost £130 each or £1,300 per table of 10
You are cordially invited to join
The Pituitary Foundation at
our inaugural Masquerade Ball.
This is a true celebration of just how
far we have come as a charity in the
past 22 years and is an event not to be
missed. This promises to be a magical
and unforgettable experience.
Come and join us for a special
evening of exquisite food, fine wines
and champagne in a luxurious hotel in
the heart of exclusive Mayfair. Our
confirmed host for this special evening
will be BBC Presenter, John Inverdale.
We will have fantastic entertainment, a
live auction, many exciting surprises and
lots of celebrities in attendance.
This event is something that we have
been striving towards as a charity for
a long-time, a true celebration of our
achievements together and we would
therefore love it if you could join us. The
objectives of this event are to generate
income, to attract celebrity support and
therefore further increase awareness of
our cause in the process.
As a charity it is important that we
hold a flagship fundraising event and it
simply had to be in London to attract
celebrity support and we are delighted
that a number of celebrities are already
confirmed to attend. We hope that this
event can elevate us as a charity, and in
turn, make more people aware that we
exist, so that ultimately we can achieve
our goal of supporting all pituitary
patients when they need us.
There are a number of ways which you
can book your tickets for this special
event:
By post: Send a cheque for the correct
amount made payable to “The Pituitary
Foundation” and posted to Masquerade
Ball, The Pituitary Foundation, 86 Colston
Street, Bristol, BS1 5BB
Online: Purchase your tickets via our
website at www.pituitary.org.uk/getinvolved/masquerade-ball/
Telephone: You can purchase your
tickets by calling 0117 370 1311 where we
can accept card payment
“I’ve been honoured to be an employee
of The Foundation for 17 years and
volunteered for them for four years prior
to that. We have been unable to hold a ball
during this time and I was delighted to
hear this will
happen in October.
A number of other
charities hold Gala
Balls annually and it’s
been sad that we couldn’t
do this. The cost of my
ticket could of course been
spent on a number of more
practical things, but for me,
hoping to go to a Foundation Ball
was always on my bucket list. Plus, I
will celebrate 30 years from my pituitary
surgery in August and this will be a special
occasion for me too. The awareness this
event will raise is undoubted. Being part
of this event, as a patient particularly, will
mean I can contribute to that awareness –
vital indeed to help make ‘pituitary’ more
understood. If you can’t be there, I’ll wave
our pituitary flag for you, but it would be
lovely if you could.” Pat McBride, Head
of Patient & Family Services
Pituitary Life | summer 2016

news Raising awareness
27
may be able to provide chair covers or
table centrepieces, either free of charge
or at discounted rates?
Printers: There will be a number of
print requirements associated with the
smooth running of this event and we
would appreciate any support with this
requirement. Do you have any contacts
in the industry who may be willing to
support us by donating print jobs as gifts
in kind?
Supporting the event
We appreciate that some
may view this event as
expensive but for an event
in Central London it compares
extremely favourably to other similar
charity events. Ultimately though, it
is a fundraising event and the more
money we are able to generate from
this event the more we can invest in
our vital patient support services and
the more pituitary patients we will
support as a result. We try to make
our service events accessible to all by
holding them around the country, for
example alternating our Conference
each time at different locations, whilst
also heavily subsidising the events
for members, but because this is a
fundraising event we are not able to
subsidise the cost.
We appreciate that due to the cost not
everybody will be able to attend the event
but we wondered if you could support the
event in some other way. If not directly, then
maybe indirectly through your contacts?
To make this event as successful as
possible, and to try and keep our costs
down, we are also looking for sponsors.
This would mean more net profit and
ultimately more money to invest in patient
services, we are asking if you can help
us? There are a number of sponsorship
opportunities available to cater for all
budgets.
Sponsorship: If you run a business or if
you have contacts who may be interested,
then our Fundraising Manager, Jay, would
love to hear from you. You can call 0117
370 1314 or e-mail jay@pituitary.org.uk
for more information.
Table Decorations: Do you have any
contacts who work in the industry who
Auction: Thanks to our amazing Event
Organising Committee we have already
been able to source some excellent
items, including tickets to the
Wimbledon Ladies Final,
bespoke jewellery, art
and weekend breaks
to name but a few
items. Ideally we
need as many
items as possible
and wondered if
you could help?
Could you, or any
of your contacts,
potentially help?
Ideas may include:
l Holidays abroad
l UK breaks
l Jewellery
l Art
l Unique experiences
l Signed memorabilia
l Tickets to sporting events ■
Pituitary Life | summer 2016

28 Raising awareness
Enter The
Pituitary
Foundation
Raffle and
WIN a £300
John Lewis
Voucher
Donate your small
or unwanted shares
and raise vital funds
for The Pituitary
Foundation
ShareGift is a unique charity which specialises in accepting
donations of shares. It generates funds from the donated shares to
give to charity, guided by donor suggestion. Since 1996, £20 million
has been donated to over 2,000 charities.
ShareGift can help by accepting small shareholdings that are often worth
less than they would cost to sell. When such a small shareholding is donated
to most charities, the charity will not be able to sell the shares because of the
commission, and in effect will have inherited a nuisance. By using ShareGifts
service, the problem can be solved efficiently with a charitable outcome.
Sharegift accepts share donations of all sizes, no matter how small.
Contact ShareGift to donate any small shares and mention you are a supporter
of The Pituitary Foundation. Your contribution will result in a donation to
The Pituitary Foundation which will help us provide dedicated support to those
people affected by pituitary conditions. For more information you can contact
ShareGift on 020 7930 3737 or through their website www.sharegift.org for
more information ■
Our summer raffle is now in full
swing and we are pleased to
say that we have already raised
£3,000. With your help we could still
raise much more! All funds raised
will help us to support more people
struggling to cope with their pituitary
conditions along with their friends
and families.
1st Prize - £300 John Lewis voucher
2nd Prize - iPad mini2 (worth £220)
3rd Prize - £50 Cash
The closing date for entries to the raffle is
24 June. We will draw the winning tickets
on 30 June and send out the prizes the
following week.
Please contact Emily Mullen on 0117 370
1319 or emily.mullen@pituitary.org.uk
if you would like to receive some tickets.
Equally, if you have already bought your
tickets but think you could sell more,
please don’t hesitate to get in touch.
Good luck! ■
Pituitary life | summer 2016

news Raising awareness
29
Leaving a lasting legacy for
pituitary patients
We have continued to implement our Legacy Strategy over the past 18
months and we thank everyone that has notified us to date that they
intend leaving us a gift in their Wills, which has helped inform our
work immensely. We are also delighted that a number of you have taken us
up on our Free Will offer. Don’t forget there is no obligation to leave us a gift
and these Wills are worth £100. Call Jay on 0117 370 1314 if you would like more
information. Here is a testimonial from one member who has already taken
up this offer:
“The fact it was FREE was fantastic. An added bonus was to find that
Alyson was involved with The Foundation, as she had a pituitary condition
and this was a way of her giving back to an organisation which assisted
her, through her legal business. This blew me away and made me
feel even more comfortable with sharing my personal information
and financial matters, as her motivations for assisting were altruistic
and heartfelt. Alyson’s professionalism left me in no doubt that I had made the right
decision to go with The Foundation’s Free Will Service, which proved much more
advantageous than any that I would have found online or subsequently been prepared
to pay for”. Esther White ■
Please help to inform our legacy work!
(All information to be treated in strictest confidence – please cut out this slip & return in the freepost envelope provided)
We have a better understanding as to who has pledged to bequeath a gift in their Will and we are delighted to say that, at the time of
going to print, we have 32 members who have pledged to leave a gift. This is an increase of 21 in just 18 months. However, there is
scope for us to develop this knowledge even further and we ask for your help by completing the form below.
If you already have your Will drafted and have included a gift to The Pituitary Foundation please let us know. We can assure you that
all information will be treated in strictest confidentiality and is purely to help to inform our legacy strategy.
I already have a Will drafted and have pledged to leave The
Pituitary Foundation a pecuniary legacy (a specific gift) of
I already have a Will drafted and have pledged to leave The
Pituitary Foundation a residual legacy (a percentage of my
Estate) of
I have drafted my Will but have chosen not to leave a gift
to charity
I have not drafted a Will but would be interested in The
Pituitary Foundation’s FREE Will offer. Please contact me
for further details
Name:
Address:
Telephone Number:
E-mail:
Pituitary life | summer 2016

Wall of thanks
Bohunt School in Hampshire
chose us as their ‘charity of the
year’ and we thank them. We look
forward to working with them over
the coming year.
Fundraising fighter :
Izzy Orgill took part in an Ultimate
Pink Collar Boxing event in support of
her best friend who is a pituitary patient.
Izzy raised £150.
Skydive: Kathryn Clohessy took
part in a skydive, in memory of her late
husband and managed to raise £166.
Milltown Race Series:
Jarrod Gritt, grandson of
Liverpool Area Coordinator, Steve
Ainsworth, is taking part in all three
of the Milltown Race Series this year
consisting of a 7KM race in May,
10KM in June and he’ll be doing a Half
Marathon in October. To date, Jarrod
has raised £50.
Chicken Nugget
challenge: 12-year-old Alfie
Cook took on a unique challenge
to show his support of mum
Helen, who is a pituitary patient.
Alfie devoured 120 chicken
nuggets in one sitting and raised
£255 in the process.
Birthday fundraiser :
Kimberley Honeyman turned her
21st birthday into a fundraising event for
us and managed to raise £150.
Afternoon Tea:
Thank you to Charlotte
Clementson who organised an
Afternoon Tea Party and raised £420!
Southampton Half
Marathon: Congratulations
to Henrietta and
Deborah who completed the
Southampton Half Marathon
and managed to raise £315
in the process.
Isabella Andrews Gold day:
The annual Isabella Andrews Golf day
in Bath on Sunday 15 May, was another
resounding success with over £2,000 being
raised. This takes the total raised through the
Isabella Andrews appeal fund to a staggering
£20,000 in just three years.
Pituitary life | summer 2016

31
Plymouth Half Marathon:
Sophie Sweet raised £900 by
running the Plymouth Half Marathon.
School fundraising:
Northwood College for Girls
undertook fundraising and raised
£313.40.
Lottery win: The very generous
Myra Bryant from Bristol won
£500 in a local lottery. Rather than
treat herself to expensive jewellery
or fine dining Myra donated her
entire winnings to The Foundation,
in particular donating towards the
Isabella Andrews Appeal Fund.
Thank you so much Myra.
Liverpool 10K: Sarah
Elghami took part in the Spring
Liverpool 10K and raised £150 in
the process.
London Marathon:
Tina Massey and Emma
Watson joined Adam Pigott
as part of ‘Team Pituitary’ at
the London Marathon. They
managed to raise over £6,000
in the process!
What an achievement.
Big 5K Fun Run:
Jessica Buck took
part in the Milton
Keynes 5K Fun Run
and managed to raise
£315 for us.
Brighton Marathon:
Dave Pay and Nina McNeill ran the
Brighton Marathon and raised over £2,200
between them. Congratulations both.
Pituitary Pen-Y-Fan Climb:
12 June 2016 The Pituitary Pen-Y-Fan
climb once again proved a popular
event with 20 people travelling from
all over the UK to take part. We saw
walkers ranging in age from six to 66
years and every single walker had a
fabulous time. In total, our walkers
managed to raise £3,500, far exceeding
the most that we have ever raised from
this challenge.
Squash Marathon:
Harry Wyld took part in a 12-
hour squash marathon in support
of his dad, Wayne, who’s a pituitary
patient. Harry raised £1,050.
Pituitary life | summer 2016

You’re invited!
The Pituitary Foundation cordially invites you
to the inaugural Masquerade Ball.
Come and join us for a very special evening of exquisite
food, fine wines and champagne in a luxurious hotel in
the heart of exclusive Mayfair. This promises to be a
magical and unforgettable evening and an event that
you will not want to miss.
Join us to help raise vital funds to support pituitary
patients in their hour of need.
This edition has been kindly sponsored by an
educational grant from Actavis. Actavis has no
involvement via its sponsorship regarding the editorial
content of the Pituitary Life Members Magazine.
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
When:
Where:
Cost:
Saturday 15 October 2016
Millennium Hotel London Mayfair
£130 per ticket (£1,300 per table of 10)
Price includes: 3 Course meal, fabulous entertainment, champagne
reception, auction, raffle plus many more special surprises!
Dress code: Black tie (mask optional)
– TO BOOK –
Call 0117 370 1311
or e-mail jay@pituitary.org.uk
Registered Charity No 1058968
advisors should always be sought. We do not endorse any companies
Pituitary Masquerade Ball A5 Invite PRINT.indd 1 02/03/2016 13:11
nor their products featured in this edition.
Find us on
Facebook
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
© 2016 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