Issue 27

Summer 2014 edition
A warm welcome
to our new
Ambassador
Issue No: 27
£5.00 inc P&P for non-members
2014
Pituitary
National
Conference
Common
travel
questions
& answers
Life with a pituitary
condition: Why is it
so difficult?
Pituitary life | autumn 2012
www.pituitary.org.uk

2
news News
The Pituitary Foundation
National Study
The Foundation is working in conjunction with Dr Sofia Llahana at UCLH
to carry out a study about pituitary conditions. The questionnaire will be
sent to all of our members during July; firstly emailed to all members who have
given permission to use their email. There will be a link within the email for you to
complete the study securely online if you wish. The same questionnaire will also be
posted out as a hard copy to all of our members, later in July or early in August. The
posted study will include a pre-paid envelope for your use to return your completed
study. The option is yours to complete on-line, if applicable, or by post.
From past questionnaires we have sent out, we know that our members are very
helpful in responding; please do look out for your study questionnaire, by email or
post, and we look forward to receiving as many as possible completed questionnaires.
Thank you ■
contents
News for summer 2-8
Local support group news 5
Professional articles 9-12
Raising awareness 13-17
Patients’ stories 18-21
Wall of thanks 22-23
Front cover photo of Stephen Campbell-Moore
by Johan Persson.
Have you spoken to
one of our telephone
or email buddies?
We can put you in touch with
someone with the same
condition as yourself, who is
happy to offer support and practical
tips, listen, share their experiences,
or simply be there for a chat when
you need it.
We have 22 telephone buddy
volunteers with a range of different ages
and have different pituitary conditions;
we also have a few mothers and carers
IT Appeal
We did it!! We reached
our target thanks to the
great generosity of our
supporters and we are in the process
of upgrading our IT system. Amongst
those we wish to thank, who very kindly
donated, are our Local Support Groups:
Liverpool, Cardiff, Glasgow, Republic
of Ireland, Salisbury, Birmingham and
Guildford. We also saw a tremendous
response to the appeal from you, our
members, and we thank all of you for
your generosity. The Cloth Workers’
Foundation very generously donated
£10,000 towards our IT appeal which
saw us reach our target in May ■
who are ready to offer support. The
vast majority of pituitary conditions
are represented amongst our volunteer
telephone buddies including diabetes
insipidus, acromegaly, Cushing’s, nonfunctioning
tumour, hypopituitarism
and some of the rarer disorders also.
Some of our telephone buddies have
specific knowledge on topics such
as employment, benefits, hormone
replacements, depression, weight,
relationships, fatigue and many other
issues.
To be matched with a telephone
or email buddy simply contact us by
emailing helpine@pituitary.org.uk or
ring our Helpline on 0845 450 0375.
Useful Contact details:
Office: 0845 450 0376
Helpline: 0845 450 0375 helpline@pituitary.org.uk
Monday to Friday 10.00am - 4.00pm
Endocrine Nurse Helpline: 0845 450 0377
Monday 6.00pm - 9.00pm
Thursday 9.00am - 1.00pm
For Enquiries: enquiries@pituitary.org.uk
For Membership: membership@pituitary.org.uk
For Fundraising: fundraising@pituitary.org.uk
Just let us know what you’d like to talk
about and we’ll do our best to find the
right volunteer for you ■
The cost of calls from mobiles and other networks may vary; please check with your
provider regarding calls to 0845 numbers
Pituitary life | summer 2014

news News
3
Are you joining us for the Pituitary London
Conference on Saturday 8th November 2014?
The biggest event of the year for pituitary patients and carers!
To mark our 20th anniversary,
we have an extra large team of
medical professionals from the
highly esteemed University College
London Hospitals supporting our
conference this year. We are very lucky
indeed to have such a superb team of
pituitary specialists, so don’t miss out!
The medical speakers include:
Dr Stephanie Baldeweg, Consultant
Endocrinologist
Dr Sofia Llahana, Nurse Consultant
Endocrinology
Miss Joan Grieve, Consultant Neurosurgeon
Dr Ann Dawnay, Consultant Biochemist
Dr Catherine Theodoraki, Specialist
Registrar in Endocrinology
Ms Inma Serrano, Specialist
Endocrine Nurse
Dr Jaunmuktane Zane, Neuropathologist
✔ There will be workshops for younger
patients and parents, a hydrocortisone
practical workshop with our Endocrine
Nurse, sessions with a social worker for
carers and families and a session with a
pituitary psychologist!
✔ There is also a popular Q&A session
where you can put your questions to
the doctors.
✔ The conference is also a chance to
meet up with 200+ pituitary patients
and carers from across the UK and
there will be condition-specific tables
during lunchtime. (Tasty two course
lunch included).
Convenient location
The Holiday Inn Wembley has FREE
parking for delegates and the venue
is conveniently located just outside the
London congestion charge zone. The
Conference venue is very easy to access via
public transport from central London. A
comprehensive travel information leaflet
will be sent to all delegates.
At the last conference 99% of
delegates said the day had improved
their understanding of pituitary
conditions!
Cost
We subsidise all places! (The full cost
to us is £93 per delegate). Rates for
members are subsidised to the greatest
extent, as the early bird rate is just £30,
available until July 1st and member’s
rate is £34 after this date. There is also a
SPECIAL OFFER on tickets for 13’s -
25’s of only £20!
Book your place today
Complete the booking form included
with this magazine and post to us with
a cheque, or you can book on our
website. To book over the phone, or
for further information, please contact
Rosa Watkin on 0117 370 1316, or email
rosa@pituitary.org.uk
Conference bookings must reach us no
later than October 31st 2014.
We are able to offer 5 free bursary places
for people who are unemployed and
most in need of information and support
regarding their pituitary condition. The
deadline for this is 30th September
2014. Please contact Rosa Watkin (as
above) for a bursary application form.
Travel can be cheaper than you might
expect if you book in advance: Look
up advance fares which are single (oneway)
train tickets offering great value for
money on many longer distance journeys.
Weekends also mean cheaper train
travel, for example, these
prices were researched 12
weeks ahead at time of printing:
• Birmingham to Wembley Stadium
- £12.50 outward single; £9.50
homeward single
• Brighton to Wembley
Stadium - £18.40 off-peak return
• Sheffield to Wembley Stadium
- £26.00 outward single; £29.00
homeward single
• Bristol to Wembley Stadium - £59 offpeak
return
Coach companies can often provide
cheaper travel than train services and are
well worth considering. The Wembley
Holiday Inn is within easy reach of the
North Circular, M1, M4, M40 and the M25;
the M1 is a 10 minute drive from the hotel.
FREE parking is available. The venue is
also 30 minutes drive from Heathrow.
The conferences are very popular
so please book early to avoid
disappointment ■
Pituitary life | summer 2014

4 News
Awareness Month
October 2014!
Details on how to get involved with this year’s Pituitary Awareness Month will be
emailed out to all members in August and announced on our website;
information will be included in the next Pituitary Life also. There will be many
exciting ways to get involved including helping us write to MPs about a new campaign we are
launching, helping distribute new hydrocortisone awareness posters, or holding fun awareness events! ■
Why gifts in Wills
are so vital to our
work
Gifts in Wills play a vital role in allowing us to plan
for the future and in the last five years, gifts in Wills
have accounted for 20% of our total income. Last
year alone, 35% of our income was made up of gifts in Wills.
We are sure that you will agree that The Pituitary Foundation
continues to grow from strength to strength and each year we
support more and more people, whilst also raising increased
awareness. The simple fact is that without gifts in Wills, this
quite simply would not be possible ■
“
Why your
support is so
important
Ifelt so alone and isolated that I fantasised about
ending my life. It felt like I was the only person with
this terrible disease. Then I discovered The Pituitary
Foundation and speaking to a warm, reassuring voice at the end
of the phone made me realise I wasn’t alone and I could cope
with the life-long consequences of this illness. They were my
rock and saw me through my darkest of days.”
Charlotte, 31, Reading ■
Please help to inform our Legacy work
by returning this form!
This year The Pituitary Foundation has began working on a new legacy strategy. If you already have your Will drafted and
have included a gift to The Pituitary Foundation would you please let us know? Unlike many charities who have wellestablished
legacy programmes in place, The Pituitary Foundation is starting from scratch and we currently have no idea
who has pledged a gift in their Will.
I have a Will drafted and have pledged to leave The
Pituitary Foundation a pecuniary legacy (a specific gift)
of
I 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.
(All information to be treated in strictest confidence)
Pituitary life | summer 2014

Local Support Group News
5
This section contains quick
newsflashes from a few of
our support Groups around
the UK!
To gain extra information and support
for yourself, please take a look on our
website to see if one of our 29 Groups
meets near you. Visit www.pituitary.
org.uk or contact Rosa Watkin on
0117 370 1316, email
rosa@pituitary.org.uk
BIRMINGHAM
Group meetings are held in the Morris
Centre Leisure & Social Club on the
(old) Queen Elizabeth Hospital site
in Edgbaston, Birmingham. They
meet three or four times each year,
on a Saturday morning. Patients,
their relatives, friends and carers are
welcome at meetings, where they will
find a friendly and informal atmosphere
along with tea, coffee & biscuits. The
Group held their Spring Time Tea in
May and the final meeting of the year
will be September 27th. Pat and Tony
Prince co-ordinate the group and can be
contacted on 0121 244 7369.
SOLENT
The Solent group have all their
2014 meetings scheduled, including
their annual meeting on the Isle of
Wight. The Group frequently invite
professional and relevant speakers and
all pituitary patients, carers, family and
friends are very welcome. All meeting
dates are on the website, or you can
contact Gail and Pam the group coordinators
for more information by
emailing g.weingartner@btinternet.
com or phoning on 01428 651526. The
Group had several new patients and
their families at the last few meetings
and other new faces are always
welcome.
REPUBLIC OF IRELAND
The Republic of Ireland Support
Group held their successful AGM
on 10 May. The main speaker was
Professor Donal O’Shea, Consultant
Endocrinologist from Saint Vincent’s
University Hospital. The title of his
talk was Healthy Living and Lifestyle.
The Support Group also gave The
Foundation a very generous donation
towards our IT appeal to fund our
server which we are exceedingly
grateful for. (Details of all donations to
our IT appeal can be found within this
edition). Thank you very much indeed
to the co-ordinators Brian & Ronnie
and to all the Group members.
CUSHING’S INFORMAL
SUPPORT GROUP UK
If you are a Cushing’s patient wanting
to speak to others for support and
information, do make sure to get in
touch with our friendly Cushing’s
informal online group! Simply email
cushingshelp1@gmail.com to be put
in touch with the Group.
EDINBURGH
The Pituitary Foundation would like to
say a big thank you to the Edinburgh
Group for the huge donation of £500
they recently sent in, towards the
charity’s everyday running cost; this
donation is hugely appreciated and
we would like to say a big thank you
to ACs Sharon and Maggie and all the
group members.
BRISTOL
Thank you to Bristol Support
Group who also recently sent in £500
towards our general overheads and
running costs. This donation is hugely
appreciated and can support us to
fund our core essential services and all
important charity costs, which we are
always in need of help with. Thank you
to all the group members!
"The support group is like a second
family to me now; we can talk freely about
pituitary and everyone understands."
(Quote from a local support group
member) ■
We need new group co-ordinators
Make a real difference in your spare time by volunteering for The Pituitary Foundation.
The work of our Local Support Groups is vital as they allow pituitary patients to gain the
support they need, wherever they live in the UK. Running a group is both rewarding
& fun!
To find out more please contact Rosa Watkin, Outreach Volunteer Support
Co-ordinator on 0117 370 1316 or email rosa@pituitary.org.uk We are hoping to set
up groups in the areas of Cambridge, Dorset, Leicester, North Wales, Reading,
and Gloucestershire ■
Pituitary life | summer 2014

6 News
New Ambassador
The Foundation is delighted to
announce Stephen Campbell-
Moore as our new Ambassador.
Stephen Campbell-Moore is an actor
who made his screen debut in Stephen
Fry’s Bright Young Things. Stephen
created the role of Irwin in the original
West End stage production of Alan
Bennett’s play The History Boys,
and also played the character in the
Broadway, Sydney, Wellington and
Hong Kong productions and in the film
version of the play. In 2004, he starred
alongside Scarlett Johanssen in A Good
Woman. He has also starred alongside
Joely Richardson in the British television
drama Wallis and Edward and had a
recurring role in BBC series Ashes to
Ashes, as Evan White. You may also
recognise Stephen as the Prime Minister
in Johnny English Reborn.
Stephen shares his story:
Sweet for survivors to recall their toils
Even of pains a man has later joy,
Recalling all he suffered, all he wrought...
There’s something to be said for telling
your story after an ordeal, getting it out
there - actors tell stories anyway, but I’m
not naturally demonstrative outside of
work and for me, it’s odd telling my own
story rather than someone else’s.
I have read a few (stories) in this
magazine and they have invariably been
instructive, moving and heartfelt. My own
condition, though serious to a point, is
mild in comparison with most. I had a
large benign tumour on my pituitary gland
that was successfully removed by Michael
Powell, in Queens Square, London,
two years ago. I am now on a low-ish
prescription of hydrocortisone as my
cortisol production is permanently reduced.
To all intents and purposes, everything
else is now fine - the other hormones
which had been seriously affected by
the tumour whilst it was there, such as
testosterone, have improved to normal
levels and so far the tumour has shown
no signs of re-growth. Nevertheless, it
managed to turn my life upside down
and inside out in a very short period of
time and two years on, continues to be a
daily struggle.
The day after my operation, laying
upright in bed with ‘packing’ stuffed up
my nose and a feeling that I’d survived
the worst, I was told by a man in blue
scrubs that ‘it’, the adenoma, was the size
of a walnut and was a ‘bugger’ to get
out. Fair enough. I still think that sounds
like a bit over the top, that it was the size
of a walnut, but that’s what he said, and
it was an image that stuck. Walnuts have
never tasted or looked the same since.
Every time I have one - I think of that
day and thank my lucky stars that life has
slowly but surely improved since then.
In the two years preceding the
operation, my world started changing
dramatically, going from confident, lively
and extroverted, to well… the complete
opposite.
Most pituitary tumours are very slow
growing and in my case, slow to identify.
If anything, my own experience is an
example of how, if local GPs and the
public at large were more aware of
the pituitary and its function and the
symptoms of its consequent malfunction,
a lot of suffering can be avoided before
a tumour grows dangerously large,
pressing against the optic nerve and
causing irreparable damage. Being the
most common brain tumour - the sort I
had and its effects, would be worth GPs
taking note - as in my case, my GP missed
it and refused to consider the possibility
of it being what it was.
What were the symptoms?
Excruciating headaches - firstly few and
Pituitary life | summer 2014

News
7
far between, but gradually coming more
often and with a greater force; arriving
quickly and without warning. There was a
constant feeling of high pressure behind
my right eye, but when the headaches
came it developed into a band of pain
around my skull and into my neck, until
my whole head felt like a thumping
throbbing weight and each new wave of
pain increased in intensity.
I went to my GP who suggested an eye
check (pressure etc) which I did, but they
couldn’t see anything wrong. Other early
symptoms included night sweats - often
around the back of the neck and head or
sometimes I just woke up soaking wet!
Perhaps most persistent and worrying
was the sense of bodily disorientation
and worry that crept into my life
incrementally over those two years. My
cortisol levels were being knocked out by
the tumour - but I just felt afraid.
My energy levels and forward drive
became very low and I went from a
thirty-two year old actor who loved
his life and work to someone who
feared engagement with it. In the last
few months before being diagnosed, it
became hard to leave the house because
of anxiety, to answer the telephone,
make the bed - let alone perform on
stage or spend a day on a film set and
all the social interaction that naturally
accompanies that profession.
In the last week of rehearsals for
Arthur Miller’s “All My Sons”, a play that
I was about to perform in the West End
with David Suchet and Zoë Wannamaker,
I reached the point of calling the
producer; confessing that I could not
face the paralysing terror of a public
performance and would have to let
everyone down and pull out. I rehearsed
the conversation in my head for a whole
weekend. I was so close to doing it - I
even tested the waters with my agent,
discussing what would happen in such a
case - with the Theatre’s insurance etc.
Being the sole cause of a big West
End production grinding to a halt and
the subsequent unemployment of
colleagues and the outrage of thousands
of ticket holders was unimaginable... and
yet the fear I was feeling was tipping the
balance towards bowing out. Luckily,
I spoke to my Dad on the phone - he
couldn’t remove the fear but he managed
to calm me a little, saying it would be
better to try and fail than to give up
altogether:
Him: “What’s the worse that could happen?”
Me: “I could die”
Him: “You’re not going to die. Trust me.”
I did go on. And once I’d done it once,
I did it again and again and the fear
was washed away by adrenaline and I
settled into the routine. Being onstage,
if anything, became a respite from the
disorientation of daily life offstage.
Daily, from waking till bed, I was
increasingly paralysed by a bodily sense
of danger. I remember driving home
one night and becoming aware that the
movement of approaching headlights
were causing me to feel terrified - if I
was scared of moving lights then I was
definitely losing it!
Hard to concentrate
I started to find it very hard to concentrate
and keep track of conversations and my
short term memory was failing me - an
actor’s worst nightmare.
However, I was also, for the most
part trying to hide what was happening
to me. Professionally, I had to, but to
people close to me, it was very hard to
communicate what was happening to me.
Sometimes I would try to explain to
my closest friends but afraid I was going
mad, erred on the side of understating
my fears, and was always assured I
‘seemed’ fine and that it would pass.
Looking back, I think the chemical
imbalance that occurs and which affects
us so strongly, is often viewed by the
outside world as an emotional blip that
will resolve itself by a change in the way
you think rather than the possibility of it
being hormonal.
Work situations were hardest, as it
got to the point that learning lines was
such a struggle and I would have to go
over and over and over them all night
before working the next day. I was sure
that everyone could see how much I was
struggling and that I’d be ‘found out’ -
but somehow I got away with it.
In time my perception became almost
permanently disassociated- I can only
describe it as looking out through ever
thickening windows onto a distant world
that was in actuality, right in front of you.
Familiar objects, places, people became
strange to me - I was looking out but all
‘connection’ was becoming muffled, my
instincts, which had always been trusted
and clear, were blurred, and even my
ability to ‘feel things’ emotionally and
aesthetically was dulled somehow. A
blue sky was no longer anything more
than that - I could see it but no longer
appreciate its beauty or derive pleasure
from anything.
Emotionally, underneath this blanket
of cloud, I always felt that the real ‘me’
was happy deep down - I have a close
group of friends and family and an
amazing girlfriend and many things to
be very thankful for. But there were
days where I was tearful and writhing in
frustration at it never lifting up and away
and being able to get back to myself.
Of course now those changes can be
identified as the result of the fact that I
was producing hardly any cortisol and
a reduced level of testosterone, as the
tumour was pushing my pituitary out of
shape. Presumably, the space the tumour
took up affected pressure in my head
and that had an effect too. And as it got
larger, the tumour started to press against
the eye, causing headaches.
No doubt, the anxiety I felt was
compounded by a prolonged period of
losing the sense of me too. At the time I
felt I was losing my mind - like I was on
a very long, bad trip.
Why, with all these symptoms,
was I so slow to identify the
problem?
It was a combination of things.
Firstly, my response to these emerging
perceptions and feelings was to shake
myself out of it - the disorientation, fear
and fuzziness - by running, exercising,
distracting my body from what it was
telling me. The adrenaline always helped
and seemed to temporarily replace what
Pituitary life | summer 2014

8 News
I was missing, but after a short period I’d
feel sluggish again; my muscles becoming
achy and tired.
With reading or trying to learn lines,
I’d try harder and harder to concentrate,
berating myself for not getting it under
control - perhaps a very male reaction.
But each day, I was feeling more and
more “hung-over”, even though I wasn’t
drinking. The healthier I ate and the more
exercise I did - the worse I was becoming.
I went to my GP a number of times in
those two years. He was a lovely, naturally
sympathetic man, and I have no doubt a
good doctor, now retired - but he failed
to make the connection between the
symptoms I was labouring under and the
possibility that it might be a tumour. I
suggested a brain scan. He did some basic
tests but assured me it wasn’t a tumour.
Convinced it was a psychological
issue, he asked me repeatedly about my
personal life and my finances - saying
that money was often the root cause of
anxiety. I felt a little patronized but was
in no fit state to press the case clearly
enough for him to change his mind.
Though sympathetic and taking time
to listen each time I came to the surgery,
he was unwilling to pursue the possibility
of it being physical rather than mental.
If he had known me before, he may have
been shocked by the change in my nature
from relaxed and easy going to being so
desperate, but we were newly acquainted
and though I had no medical history of
hypochondria or being a time waster - I
can’t help thinking that maybe he had me
down as a ‘highly strung artistic type’.
Eventually, exasperated by my
repeated attempts of being granted a
scan - he suggested I saw a therapist. I
was surprised, but did so - anything to
get right again.
After one session the therapist said
that I was clearly anxious but perhaps
rightly so, and that maybe I should get a
private scan and take it to a neurologist if
my GP was unwilling to pursue that line
of enquiry.
When Michael Powell placed the
disc of my scan into his computer and
immediately identified the cause of all
this suffering, as the image of my brain
popped up on his screen, I was calm,
collected and utterly relieved. My enemy
was real now, identifiable and physical
and I could start to tackle it with the help
of this brilliant surgeon. I was no longer
punching the air, I still had no control
but at least I was moving in the right
direction. A few weeks later I had the op.
The weeks following, of course, were all
about recovery - taking it easy, sleeping a
lot but getting on with things as normally
as possible. Within three weeks I was
filming a TV series called ‘Hunted’. I
don’t regret it, but to be honest I wouldn’t
recommend throwing yourself in the deep
end either - it was too early to be back
at work. I was playing a grief stricken
widower which suited my world weary
look though. Perfect!
The job lasted five months and rather
than being a new man again, I was still
forgetful, nervous and de-energised,
though the headaches had gone - I still
experienced disorientation and fuzziness.
On the upside, I never slept so well
as in those few months, night times
were a knockout: I clearly needed the
rest - and used to half joke that my
conscience had been cleared somehow
during the operation. In the knowledge
that someone had been rummaging
around in my head, I really felt the extra
space that had been created up there,
and that things had not quite settled. It
sounds silly, but I was acutely aware of
pressure changing, as stuff was ‘clearing
through’ - I heard some very unusual
and unexpected popping and squealing
sounds in my nasal cavity, like when the
cabin pressure in a plane changes.
Emotionally, I was exhausted and
upset that things had not become right
again - that I was not back to my old
self as I had hoped, and if anything, the
future looked bleak and full of fear. I had
countless nights writhing and in tears. I
was mourning something I’d lost forever
- as if I had to say goodbye to someone
I’d known for years and get to know this
slightly fuzzier, tired, less capable and
less humorous man. And I wasn’t too
keen on him at all - nice enough, but a
bit pitiful and just a bit of a bore.
Five months after the op, blood
tests showed improved hormone levels
except for cortisol - I was prescribed
10mg per day of hydrocortisone, which
was then upped to 15mg. It made a
huge difference almost immediately in
combating that bodily sense of fear I had
been having for nearly three years.
Two years on, I have just finished a
run in the West End, of ‘Chimerica’, - a
play that took a lot of energy and love
and I gave it all back with full force each
night.
It tells the story of a photojournalist
searching for the “tank man” - an
unknown figure he had photographed
twenty years before, on the day following
the Tiananmen Square massacre. In the
photograph he stands alone, in front of
a tank convoy that was moving into the
centre of city, halting them, and refusing
to let them pass. David and Goliath;
an iconic image of bravery in the face
of a towering military might. It was a
humbling story and a joy to be in.
During the run, we were able with
the theatre owner’s permission, to use
the theatre as a place to leaflet, raise
awareness and collect money for The
Pituitary Foundation.
My next step for myself is to
try to understand now when I feel
disorientated, detached and fuzzy;
whether it is something I can overcome
by my outlook, or medically, or both. I
can’t help feeling that during the time
I’ve suffered having a lack of cortisol, a
real and other fear has crept in too and
I’ve used my condition as an excuse and
reference for everything I feel. Though
it maybe true to an extent, it is also time
to be a bit more brave, and in a different
way, from now on.
I joined as a Life Member three years
ago and really admire the work of The
Pituitary Foundation in supporting
pituitary patients. It is for this reason that
I am supporting the “Brick by Brick”
campaign; I want to help The Foundation
be there for future generations of
pituitary patients by providing them with
a source of sustainable income. For this
reason, I have purchased a brick in the
wall - I hope you would consider doing
the same? ■
Pituitary life | summer 2014

Professional articles
9
Life with a pituitary condition.
Why is it so difficult? By Dr Sue Jackson
In October 2006, the Needs
Analysis report was delivered
to The Pituitary Foundation by
researchers from the University of
the West of England in Bristol (the
pdf is still available to download from
The Foundation’s website or from
Sue Jackson’s Academia web page).
The findings highlighted a number
of concerns and identified the unmet
psychosocial needs of pituitary patients.
For example:
l Issues regarding identity suggested
a long and unsupported struggle to
come to terms with a profoundly
changed image of self;
l Changes to appearance were felt as
a loss, with individuals experiencing
diminished control and confidence to
deal with these changes;
l Infertility and loss of libido were
evident within relationships/marriages
which had a further impact in terms of
participants’ overall sense of identity;
l Post Traumatic Stress symptoms were
evident for many patients after dealing
with the initial impact of diagnosis
and subsequent surgery;
l A need to accept or make adjustments
in the juggling of relationships,
lifestyle, and hormonal management,
was felt by many to be inescapable
and emotionally demanding.
Having spoken to some individuals who
live with pituitary conditions, I think
what we missed out in the report was
any kind of explanation of why it is so
difficult to live with a pituitary condition.
A good place to start is with an
acknowledgement that it’s complicated
being human. There are many aspects
to being human (see the very simplified
diagram below) and they all interact with
each other. For example, your bodily
appearance is just one aspect, but if you
catch a view of yourself in a mirror and
don’t like what you see, it will affect how
you think about yourself, how you talk
to yourself, how you feel, and how you
interact with other people.
I presented the “being human”
diagram to the Pituitary Foundation
Annual Conference in Birmingham
last year, and I started by asking the
delegates how many aspects of being
human they thought their pituitary
condition affected. Answer: “All of
them”. I also asked, “Do you think that
other people recognise it?” Answer:
“Generally no”. Finally I asked, “Do
you think your healthcare professionals
understand it?” Answer: “Definitely
no”. I recently spoke at the endocrine
nurse symposium at the European
Congress of Endocrinology in Poland.
I showed them the same diagram and
asked them how many aspects of being
human they thought the delegates at the
Birmingham conference had identified
as being affected by a pituitary condition.
Answer: “All of them”. Then I asked,
“Do you think that the other people that
your pituitary patients have to deal with
recognise it?” Answer: “Generally no”.
Finally I asked, “Do you think that your
pituitary patients think that healthcare
professionals understand it?” Answer:
Some said yes, but in the end I think we
agreed that while healthcare professionals
might understand, the focus on physical
monitoring of the condition may well
create the impression that they don’t.
In order to explain why it’s so
difficult to live with, I’d like to start with
Being human
Importance of caring and the three affect-regulation
systems (adapted from Paul Gilbert, 2009a)
Drive, excitement, vitality
body
sensation
symptoms
Mind
thoughts
ideas
beliefs
Appearance
Head space
depression
Spirituality
me
Personality
Heart space
running away
Threat system
History
&
experience
Feelings
mood
emotions
wanting
Contentment, safety, wellbeing
anxiety
anger
Pituitary life | summer 2014

10 Professional articles
looking at 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
on page 9, along with the explanation of
the brain systems.
1. 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 wants and
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, e.g. 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 no-one to help you
to acknowledge and celebrate your
successes. A lack of kindness as you are
growing up has been shown to affect the
development of the affiliation system.
Sadly, some people receive such little
love and care as they grow up, that this
part of the brain remains significantly
underdeveloped even as adults.
2. Threat system (also known as the
‘fight 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.
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.
I should point out that what I’m
going to say next is my understanding
of where we’re up to with the science
of trying to understand the possible
impact of pituitary conditions. We are
constantly finding out new things, and
so our understanding and explanations
of effects will therefore change over
time. In Linda Rio’s book “The Hormone
Factor in Mental Health” there are two very
good (although very technical) chapters
which talk about the impact of stress
in relation to bodily functioning and
the psychological aspects of pituitary
conditions. The chapter authors make the
case that the body’s endocrine system can
be affected by the environment, so if you
experience some kind of trauma, your
body’s endocrine system will respond to
that. While the chapters are very good,
the authors report that if you replace
the hormones in pituitary patients
they should simply return to normal
functioning.
At the end of one of the chapters,
the author concludes by saying that he
doesn’t understand why this doesn’t
seem to be the case, and goes on to
say there must be something different
about pituitary patients that prevents this
from happening. I would say, as would
Carrio and colleagues (2004), that this
is a reflection of the limitation of the
biomedical model employed in Western
medicine which assumes a separation
of mind and body; and where long
term physical health conditions are only
considered in terms of a disorder of the
biological body, with subsequent efforts
focused on returning this biological body
to normal functioning, or preventing
acute exacerbations of symptoms.
A bio-psycho-social model would offer
a possible explanation of the lack
of expected ‘normal functioning’ by
including what we know about how
traumatic events affect individuals, their
memories and emotional functioning.
We already know that traumatic events
can leave the ‘threat system’ switched on,
thus leaving individuals stuck in what I
refer to as the ‘toxic triangle’ of anger,
anxiety and depression. The feelings
can be very intense, to the point of
being overwhelming, with individuals
reporting that it feels like their feelings
are in control of them, and that they
feel like they have no control over them
no matter what they try to do. When we
talk about traumatic events, we might
perhaps think about being in a road
traffic accident, but being diagnosed with
a brain tumour has the capacity to be a
traumatic event, as does, for example,
subsequently finding out that you are
infertile as a result of your treatment
for a pituitary condition. Psychologists
currently believe that all memories are
stored with the equivalent of emotional
tags. When we remember something,
we also remember (or experience) the
emotions associated with that memory.
Traumatic memories are considered to be
‘locked’, i.e. the emotional tag attached
to the memory is very powerful and
resistant to change, except under very
particular circumstances, and therefore
the associated emotional upheaval is
likely to be significant and long lasting.
Ecker, Ticic & Hulley in their 2012 book
“Unlocking the Emotional Brain” make a
compelling case for the limitations of
CBT (Cognitive Behavioural Therapy)
in relation to removing the emotional
charge of such memories, and present
the evidence as to how and why
these memories can be deactivated
by interventions such as EMDR and
coherence therapy among others.
Pituitary life | summer 2014

Professional articles
11
I would add that I think the constant stress
of living with a body that has already
proved itself to be unreliable (in that it
developed a brain tumour) is also enough
to keep the threat system active. Lots of
my clients with a variety of long term
conditions report that they don’t know
what their body is going to do next, and
that they don’t trust it. This switches off
the heart system and activates the threat
system (in Gilbert’s model).
I find Elain Aron’s book “The Highly
Sensitive Person and How to Cope
When the World Overwhelms You”
on sensitivity and increased emotional
reactivity very useful (and possibly more
easy to understand than Linda Rio’s
book). Aron makes the case that some
people are born highly sensitive (to their
bodily functioning and/or their emotional
feelings), while others become so as a
result of (traumatic) life experiences.
Whatever the original cause, she makes
the case that being highly sensitive is not
easy to live with, and that individuals
who are highly sensitive are often
misunderstood by other people, leaving
them feeling very isolated and highly
stressed (sound familiar?). Her book talks
about how to deal with a sensitive and
highly reactive body system that becomes
easily overwhelmed leading to extreme
fatigue (but an inability to sleep despite
being absolutely shattered). If you have
become sensitive as a result of your
pituitary condition, then the early chapters
in her book, which focus on childhood
experiences of sensitivity, will probably
not be that helpful. But the later chapters,
focussed on dealing with sensitivity as an
adult, might prove very useful.
Finally, remember the Pituitary
Foundation has many different ways of
offering support. For a start there is the
‘Wellbeing Series’ of booklets focussed
on coping with the psychosocial aspects
of pituitary conditions. There are also
many other leaflets aimed at helping
patients to deal with different aspects
of life with a pituitary condition.
The Foundation also has a telephone
helpline, local support groups, regional
and national conferences and web-based
services ■
Information for patients taking hydrocortisone:
There is more than one supplier of hydrocortisone and a new
product has recently come onto the market. This particular
hydrocortisone tablet has not been licensed for pituitary patients with
adrenal insufficiency, but for children with CAH. If patients find that they
suddenly feel any different they should check the hydrocortisone that they have
been prescribed, and if it has changed from their usual brand, to request to go
back to their previous supplier – through their GP or usual pharmacist ■
Common travel questions
we receive on our Helpline
Q
: I work abroad and have
just been diagnosed with a
pituitary tumour. I want to have
treatment in the UK, but will
it be safe for me to fly with an
untreated tumour?
A
: Yes, it is safe to fly.
Q
: I will be having my pituitary
tumour surgery soon but we had
booked a holiday abroad and
want to know how long it would
be until it is safe to fly?
A
: Depending on your surgery, it
should be safe to fly from six
weeks post operatively. This should
however, be discussed with your
neurosurgeon.
Q
: When I mentioned I had a
pituitary tumour, I had a very
expensive travel insurance
quote; is this normal to have to
pay so much?
A
: Travel insurance companies
can vary in cost about medical
declarations. We have a list of
travel insurance companies that
other patients have used and told
us about, on our website. These
can be found at www.pituitary.
org.uk/information/livingwith-a-pituitary-condition/
finances-and-practicalities/
travel-information/
Alternatively, we can tell you about
these by calling our Helpline on
0845 450 0375, if you have no
internet access.
Q
: Will I be able to take my needles
for my GH (growth hormone)
through customs?
A
: Yes, as they are for medical use. It
will help if you also carry a letter
from your GP or endocrinologist
which mentions the medication
you need to carry and take. Keep
this letter (and a repeat prescription
Pituitary life | summer 2014

12
Professional articles
copy if you have one) with all of
your medication, in your hand
luggage.
NB: We have a new ‘Travel
Letter template*’ which you can
email to your endocrine nurse
or GP if you don’t have one of
these. GPs may charge for this
service, but most endocrine
consultants/departments should
provide this free of charge.
Q
: How can I keep my GH cool
whilst travelling and then at the
hotel?
A
: A suitable insulated cool bag with
pre-frozen ice blocks should keep
your GH cool for approximately
12 hours. Your GH company may
be able to supply a cool bag, if you
ask your endocrine nurse. Carry a
spare freezer block (un-frozen) in
your suitcase.
Ask the hotel reception if you can
use the hotel’s freezer on arrival;
give them one unfrozen freezer
block labelled with your name.
Twelve hours later, swap the blocks
to ensure you continually have a
frozen block to use both day and
night inside your cool bag. Some
hotels may be able to provide a
fridge in your room, for a small
cost, if you ask your travel company
when booking your holiday.
Q
: How do I carry my medications
whilst travelling?
A
: A small plastic sandwich box with
a secure lid, which will fit in your
hand bag or flight bag, is ideal.
Label this with your name and keep
your medication in the boxes your
chemist supplied them in. Keep a
list of your medication, doses and
dose times (or your Patient Care
Card) in the box. The Foundation
has a plastic ‘hydrocortisone box’
to carry emergency hydrocortisone
injections. These boxes can be
purchased through our website shop.
Q
: How much medication should I
take with me?
A
: Always take extra with you, to allow
for emergencies and delays.
Hydrocortisone tablets - always have
double the amount you would usually
take, plus another week’s supply at least ■
*New Travel letter template
For those patients who do not
have a travel letter which displays
their medication, we have a
new template letter. This letter can
be emailed to you on request, for you
to then email this to your respective
endocrine nurse
or GP; your personal medication and
what you would need in emergency (for
example if you take hydrocortisone and/
or have diabetes insipidus) should be
typed in, dated, signed and printed off
on their hospital/GP letter head. This
competed letter is then returned to you
for you to carry when travelling abroad.
Please ensure you give your endocrine
nurse or GP plenty of time to complete
your letter. Our Patient Care Card
(available to order free of charge from
our website shop) is beneficial and
recommended to carry along with this
travel letter. For your free template travel
letter, please contact
helpline@pituitary.org.uk
or call 0845 450 0375 ■
Pituitary life | summer 2014

Professional news Raising awareness articles 13
The Brick by Brick campaign
“Help us build the ‘Foundation’ of The Pituitary Foundation…Brick by Brick!”
Membership plays a key role in helping to fund
The Pituitary Foundation. However, the reality is
that membership accounts for only 11% of total
income annually. The Foundation receives NO Government
funding, which means that every year there is another 89% of
our income that we have to find that is required to ensure that
we continue to be there for pituitary patients.
The ‘Brick by Brick’ Campaign aims to provide The Pituitary
Foundation with a vital source of ‘sustainable income’. This is
income from a continuing source, unlike grants or pharmaceutical
funding, which we may or may not be successful at securing. The
‘Brick by Brick’ Campaign aims to encourage people, if they are
able, to make a regular giving contribution to The Foundation.
Supporters can either take out standing orders for monthly
donations to The Foundation or they can pay by affordable,
monthly direct debit.
Each regular giving contribution, whether direct debit or
standing order, is like a brick in the Foundation of our charity.
Over the next year we hope to complete one wall that will
provide us with sufficient income for our Support Services
– ensuring that we are able to respond to your need for
information, advice and support for many years to come.
Everyone who donates via the regular giving scheme will
have their name on the wall as shown above which will appear
on our website, unless there is a wish to remain anonymous.
As each brick is bought, the wall will eventually turn orange,
representing that we have reached our goal.
Will you help us to achieve our goal…?
Our Celebrity Ambassadors, Mike Crawshaw and Stephen
Campbell-Moore, have both given their backing to the
campaign and have both created monthly direct debits. We also
have staff and Trustees who have done the same.
The question is…..Will you?
What to do next:
To set up a direct debit:
Visit the Brick by Brick page on our website
www.pituitary.org.uk/get-involved/donations/brickby-brick
l Call 0117 370 1314
To set up a standing order:
l Simply complete the standing order form on the
insert in this magazine and return to The Pituitary
Foundation, 86 Colston Street, Bristol, BS1 5BB –
DO NOT SEND TO YOUR BANK. Make sure
you specify the amount you would like to donate each
month and the date you would like to pay this ■
Pituitary life | summer 2014

14 Raising awareness
Thank you to all volunteers
The Pituitary Foundation would like to use National Volunteers’ Week
as an opportunity to say a massive thank you to all our wonderful
volunteers. Volunteers’ Week is an annual campaign which celebrates the
contribution that millions of volunteers make across the UK.
You are truly invaluable to us and we could not be a charity with a national reach
without you! To put volunteer involvement in perspective, our volunteers have been
estimated to provide the work of 10 full time equivalent employees. (This equates to
16,500 hours a year!)
With our thanks and appreciation for your outstanding commitment, from all the
staff at The Pituitary Foundation ■
To celebrate Volunteers’ Week,
we have asked Office volunteer
Lucy for her volunteer story.
My name is Lucy Clifton;
I am a pituitary patient
and a volunteer at the
Pituitary Foundation’s National
Support Office in Bristol. During
the 1980’s I had various symptoms,
hospital appointments, tests and
different medications. When I was on
Bromocriptine, one problem I had was
that my hands and feet were so cold
that I had to wear at least two pairs of
gloves and socks when I went out. In
1989, following my first MRI scan, I was
diagnosed with a prolactinoma and was
operated on to remove it.
During the following years I kept
reasonably well and was enjoying my job
in Personnel Services at the University
of Bristol. However, in 1999, following
a routine check-up and scan, I was told
that the tumour was re-growing. I then
had five weeks of radiotherapy. This
was very scary, wearing a face mask
whilst being treated and not being able
to move. My husband and I called
my mask the “Darth Vader” mask. I
became ACTH (adrenal) deficient after
the radiotherapy and began taking
hydrocortisone and thyroxin.
During my illness I did not really
know anything about the pituitary gland.
It was not until I found out about The
Foundation, especially reading their
booklets and website, that I learnt more.
This was particularly helpful when asking
questions at my appointments with
consultants and doctors.
When I retired from my job at the
University, I contacted The Foundation to
see if I could become a volunteer at their
office; fortunately, they did have a place. I
felt that as The Foundation had helped me,
I could, in some way, be of use to them.
For over six years now, I have spent every
Tuesday in the office undertaking any
administrative tasks the team needs done.
The tasks I undertake are varied, so
the day is never boring. I telephone,
e-mail and write to members regarding
changes to their subscriptions. I prepare
invoices to be sent to hospitals who have
ordered booklets and contact hospitals
when such invoices have not been paid.
I record all the statistics from Helpline
calls that are passed to me by the staff
and Helpline operators. This information
is very useful for the Patient Support
team, Menai our Chief Executive Officer,
and the Trustees. They are able to see
how we have been helping the people
who call and can plan for the future. I
also undertake a similar exercise with
regard to booklets sent out to individuals,
hospitals and Local Support Groups.
Other tasks I do are checking when
LSG meetings are being held, stock
takes of merchandise and stationery
and stuffing envelopes when there is
a large mailing, plus filing. I also help
with conference admin tasks, such as
putting delegates’ workshop choices on
the database, preparing name badges and
making up information packs. I have
even, occasionally, been asked to take the
minutes at Trustees’ meetings. It was
very satisfying to know that I can still
read my shorthand!!
Volunteering at The Pituitary
Foundation is very rewarding for me and
I hope that I have been of some help
to them ■
Pituitary life | summer 2014

Professional news Raising awareness articles 15
Golf for Issy!
As part of the Isabella Andrews
Appeal Fund, her grandfather,
Garry Park, organised a charity
golf tournament at Lansdowne Golf
course, Bath on Sunday 27 April 2014.
This event was in high demand and sold
out within a few weeks!
On the day there were 80 golfers
competing, in teams of four and one
of these was none other than The
Foundation’s Celebrity Ambassador,
Mike Crawshaw, of The Overtones.
Mike contributed greatly to the success
of the event by donating lots of signed
‘Overtones’ memorabilia that was
auctioned via eBay to adoring fans.
The Pituitary Foundation would like
to thank everyone involved for their
generosity and support. The event
managed to raise a staggering £2,500.
Grandfather Garry said: “I was delighted
with the success of the event. This was
a first event, so I wanted to see how this
event went, but it was quite clear that
we could have sold the event twice over.
I was so happy with the amount raised,
because I know just how much this
will mean to The Foundation and how
much difference this will make to their
work. This will now become an annual
tournament and I’m already looking
forward to next year’s event which we
hope will take place in May 2015!”
The Pituitary Foundation would also
like to give a special mention to our
Ambassador, Mike, who not only braved
the wind and the rain to take part, but
also helped to increase awareness of
The Foundation no end by constantly
tweeting about the event to some
50,000+ followers and mentioning it via
the official ‘The Overtones’ Facebook
page, which has a following of 65,000.
As a result of this increased awareness
we subsequently saw a number of fans
supporting The Foundation through a
variety of methods, from selling summer
raffle tickets, to taking part in runs and
even organising a ball in one case.
Mike said: “I was honoured to have
been asked to become an Ambassador
for The Foundation and have said that
I will help whenever I can in terms of
raising funds and awareness. I have quite
a busy schedule, touring with the group,
but I was delighted that I was asked
to play in this tournament. I wouldn’t
have missed it for the world; Issy is an
amazing little girl and I am delighted that
we managed to raise so much money.”
Mike continued: “I also love the idea
of the ‘Brick by Brick’ campaign; I will
be donating monthly and I will also be
encouraging ‘The Overtones’ fans to do
the same. I hope it can be a resounding
success and I hope that The Foundation
members will also consider setting up a
regular donation”
Thanks to the success of the Isabella
Andrews Golf day, the appeal fund now
stands at a whopping £8,034.42 raised
in less than one year. Thank you to
everyone who has helped by fundraising
or donating. You can still donate now
by texting ISSY79 £10 to 70070 or by
sending a cheque made payable to “Issys
appeal”, The Pituitary Foundation,
86 Colston Street, Bristol, BS1 5BB ■
Do you play golf?
Could you organise a charity
golf event at your local
club? Garry Park really
enjoyed organising this event and
it was certainly well received by the
golfers, with people being turned
away. It’s also in the best interests
of the golf club. If you would like
to discuss organising your own golf
tournament e-mail jay@pituitary.
org.uk or call 0117 370 1314.
He would love to hear from you!
Pituitary life | summer 2014

16 Raising awareness
Ironman: Great British athlete - forever ill
James Muscart
There are few things in my life that no one can take
away from me: I will always be an Ironman. I will
always be a Great British athlete but I will also, always be ill.
Diagnosed at the age of 12 to be hormone deficient, I
was told for the rest of my life I would have to inject myself
daily; later at the age of 15, I started to receive intramuscular
testosterone injections every few weeks and taking daily steroid
tablets. These treatments that I take are to give me what my
pituitary glad does not produce by itself. The treatments are
not without side effects; my parents and myself were told I
could go blind, I would add weight, could suffer with nerve,
muscle and joint damage, along with migraines and depression.
We were also informed that I would not grow past 5 ft 4”, but
for my best chance of this treatment to work, I needed to stay
strong, fit and do exercise.
Conditions caused by the pituitary gland only affect 0.08%
of the UK population and are unheard of by the general
public. I lived from the age of 12 until the age of 23 without
telling a soul, terrified to be treated differently, ashamed that
I wasn’t normal, that I wasn’t like the other boys in school. I
considered myself a freak. The condition being unknown and
the doctors unsure on its results left my family and I in a very
vulnerable position, being scared of what lay ahead for us.
Although I have had my dark moments with this condition,
I have conquered this challenge, growing to 6ft 2 inches,
representing Great Britain at the world championships,
competing in the world’s longest one day endurance event on
the planet and pushing my limits - looking to qualify for the
world championships at the Ironman distance. I want to raise
awareness of the disease; I want others to know they are not
alone, they can still be strong members of society that can
achieve any dream they set themselves.
I won’t let it beat me, neither should you!
The Pituitary Foundation would like to thank James for sharing
his story and for his fundraising efforts. James is due to take
part in Ironman 2014 this July, having already raised over £500
by running the Plymouth Half Marathon. If you have been
inspired by James’ story and would like to take on a challenge
of your own, then please contact Jay by emailing
jay@pituitary.org.uk
A challenge could be anything that is personally challenging
to you, it doesn’t have to be a triathlon, it could be a run, cycle,
walk or anything that you choose to do.
If you would like to support James in his fundraising efforts
then please visit www.justgiving.com/james-muscart ■
Pituitary life | summer 2014

news Raising awareness
17
Laura’s story
On 6 April 2014 Laura Wood and her friends and family
took on a series of challenges on a global scale. Here
Laura tells her tale: “I entered the Brighton Marathon 10K
along with my sister-in-law Fiona, and old school friends Rita,
Clare and Marie! On the same day, my step-brothers Tom and Sam
were attempting the Cape Town Ironman - a 2.4 mile swim, 112
mile bike ride, and THEN a marathon. Those crazy brothers...
Why...? Ten years ago I was diagnosed with a tumour on
my pituitary gland that was causing a disease called acromegaly.
In July 2005 I had surgery to remove the tumour, which
was successful but caused my pituitary to stop functioning.
As a result, I have a life long condition known as panhypopituitarism.
This impacts on many aspects of my life
and I need to take a lot of daily medication. This stuff is rare
and the charity is small, but it makes a massive difference to
those of us affected. I’ve literally learnt the most about my
condition from their website, booklets, and from the London
Area Pituitary Patient Support (LAPPS) meetings. As a direct
result, I’ve been able to work more proactively with the medical
experts and improve my quality of life.
Unfortunately, Sam broke two ribs before Ironman and had
to withdraw, but Tom finished all 226km of the Cape Town
Iron man in a mind-blowing 14 hours and 19 minutes. He
really is an iron man!!
Back in Brighton, us girls had a fantastic day at the 10K
and all very much enjoyed the challenge. I felt so proud to
have raised so much money for the charity as a result of our
combined efforts. In total we raised £2,738.23 ■
Zip slide
Thank you to everyone who braved the Zip slide
in North Wales in May, collectively raising over
£5,000!! The rain, cold and brisk winds didn’t deter
our team from taking on this fearsome challenge ■
It’s a family
(fundraising) affair….
The family of Liverpool Local Support Group Area
Coordinator, Steve Ainsworth, also took on a host of
fundraising challenges for The Foundation this Spring.
On Sunday May 18th, Steve’s wife, Sheila, ran the
Manchester 10K. Sheila was joined in this race by
granddaughter Latifa Gritt and grandson Jarrod Gritt. All three
had a fantastic time pounding the streets of Manchester and all
finished in very respectable times.
The previous Sunday, 11th May, the couple’s other grandson,
Rhys Gritt, took on a challenge of far more adventurous
proportions as he took part in the largest zip slide in the
Northern Hemisphere. Spanning one mile and reaching speeds
of 100mph, this event is the fastest zip line in the world and
is described as “the closest thing to flying”. Rhys bravely flew
through the Snowdonia mountains in his fundraising quest.
Together, the family fundraising efforts managed to raise
over £500 for The Pituitary Foundation and we are extremely
grateful for their combined efforts.
Steve said “It was great to get the family together and working
as a team to raise vital funds, they all enjoyed it so much and I
would highly recommend that if you have family members who
can support you with any fundraising to get them involved.” ■
These stories not only demonstrate just what
committed supporters we have, but also the
benefit of getting family and friends involved.
Is there a family fundraiser that you could organise?
Whether it’s a family challenge or a family event, the
important thing is that it galvanises the group as they
work towards one shared goal. If you can think of an
event that would appeal to your family or friends then
contact Jay by emailing jay@pituitary.org.uk ■
Pituitary life | summer 2014

18
Patients’ stories
Sarah’s story
I
suffer from anterior pituitary
failure, due to a Rathke’s cyst
diagnosed in 1995 and operated on
twice (1996 and 1998).
My parents noticed that I did not grow
or develop like kids my age, and after
not hitting puberty, my father started to
investigate my general health, as he is a
neurologist. He started all kinds of blood
tests, X rays and lastly, an ultrasound
which the doctor did not see any trace
of a uterus. At that time I was living in
Libya with my parents, with poor health
services; the doctors decided to send me
to Switzerland for further investigations.
I was suffering from very bad headaches;
I used to hit my head on the wall to try
to make it go away.
in my head
In Zurich I was seen by a gynaecologist
who said that I did have all my female
organs and Libyan doctors should
be more careful on their diagnosis.
After this, I was seen by a paediatric
endocrinologist (as I was about 15 years
old), who suggested that my problem
was not in the uterus or blood, it was in
my head. I remember my father telling
him what was going on with me and
all the tests I had been through; the
professor was just looking at me smiling.
At the end of the meeting with him he
said “my problem was in my head, not
anywhere else.” He looked at me and
said “don’t listen to anyone who says you
are not normal, you are here in the right
place and we will fix your problem”. I
was very happy then and I wanted to go
for an ice cream.
MRI scan
The doctor ordered an MRI scan; as it
was too expensive for my father to do it
in Zurich; he decided to do it upon our
return to Libya. A few months later we
received a letter from Zurich saying that
I had to go back to Switzerland, as they
had diagnosed a mass on the pituitary
gland which might be a tumour or a cyst.
An appointment had been made with
a surgeon in Zurich that summer just
before my last year in high school.
On the operation day the surgeon
(Prof. Landolt) said to me “be ready to
become a brand new person when you
wake up.” I was very excited and curious
looking at the theatre where I was
getting operated on, as I had in mind to
become a doctor when I graduated high
school.
urgent operation
Two years later, I was in my first year of
medical school, just after I finished my
pre-medical year. Prof. Landolt wrote
to my father asking for an MRI scan
and a follow up visit as he requested a
year before that. It was that time when
a reoccurrence of the cyst was detected
in the MRI images; it was larger and
pressing on the remaining part of the
pituitary and causing mild pressure on
the optic chiasm, and he ordered an
urgent operation (I was in Zurich with
my father then, as he requested the
follow up). As my father didn’t have
the money for it, he suggested that we
go back to Libya and he would try to
Pituitary life | summer 2014

Patients’ stories
19
raise some money and come back for
the operation; Prof Landolt refused my
return to Libya and said it is not a wise
decision, I was admitted the same day
to the same hospital in Zurich, but later
that day the hospital director came to
my room and asked my father for us to
leave as no payments were made for the
operation. I left crying, thinking that I
will die and wouldn’t do all the things I
wanted to do in my life. The next day we
received a call from the surgeon saying
that I was not allowed to travel back to
Libya before the surgery was done and
he would fix the payment problem and
I was readmitted again to the hospital.
We realised that the nursing team had
protested my discharge from the hospital
and that this was not fair on me, even if I
didn’t have the money to pay.
Surgery was done (1998); it was a
miracle and until this day I do not know
who paid for it. With a new technique
carried out on the second surgery,
no reoccurrence of the cyst has been
detected till today. A few years later I had
a follow up again, but I couldn’t have this
because of the money situation and my
parents did not have any left to help.
I had to leave Libya
Then I realised that I have to find a way
to take care of my condition because
I found myself with no medications
or any kind of treatment, and I had to
leave medical school as well, as it was
even more expensive; I realised that I
have to do something about it myself.
Firstly, I had to leave Libya for a better
life elsewhere; the only window out was
the Italian embassy in Libya. I learned
Italian in six months, had loads of exams
to earn a scholarship and I finally left
and went to Italy; tried to finish medicine
there but it was impossible, but I finished
my Italian diploma. I was ill again in
2007 and with the help of my friends in
Italy, I went back to Zurich to see my
doctors; they weren’t happy at all by the
fact that I did not have any medications
or treatment for all these years. It was
when they diagnosed adrenal failure and
a year later I had thyroid failure, I realised
that I have to seek advice; my doctor in
Italy said I have to settle somewhere and
decide where. My dream was coming
back home to the UK ever since my
parents decided to leave the country in
1988, so I did it, got my things ready and
here I am back home, in the Wirral.
medical school
Throughout the years, my glands were
shutting down one after the other -
it started with the ovaries and now
pretty much all of the glands (thyroid,
adrenals, ovaries). I was a medical student
a year before I was diagnosed but,
unfortunately after the second operation
in 1998, stopped my studies; but to cut
a long story short, I decided to apply
again this year to finish medical school
in Liverpool! I studied Italian as well in
Italy, but I have always been held back by
the condition which I must say and yet I
always go back to what I was doing and
attempt to finish it. It had also affected
my work on several occasions and
my physical daily activity, but I always
keep fit and healthy by doing spinning
classes and eat well to overcome any
complications it might cause.
Where I am now
It’s a long story; I just highlighted what
came into my mind for now; to be
where I am now took a lot of work and
I am proud of it. I had to travel from
Libya where my folks live, study in Italy,
so I won’t be coming back to the UK
uneducated; tried several jobs along
the way whilst I was ill, as I didn’t have
access to health care or medications for
a very long time, but now I am under
the care of professor David Bowen-
Jones and my GP, Dr Bates, and I feel
better and beyond thankful which words
cannot express. I still have bad days
and good days regarding my condition
and I try to be involved now with your
Foundation which I recently came across
via the internet ■
Michael’s story
I
was diagnosed with TB at 17 and I
had one and a half years off work.
This returned when I was 20 and I had
to have a further year off work.
At 21, I joined the firm I spent my
working life with - 42 years, and I was
able to continue my interests. I played
tennis until I was 35, then friends
moved away. My main interest was
chess; I played in four leagues, national
and international tournaments. I also
managed to play in the Olympic team
in 1964. For relaxation, I made frequent
visits to the Royal Festival Hall and
National Film Festival.
Not surprisingly, with all the above
interests and working full time, at 51,
I suddenly felt very tired and went
to see my doctor. Although I had no
acromegalic appearance, the doctor
suspected a pituitary problem and sent
me to the hospital for tests. As my
doctor suspected, I had acromegaly and
I duly had the tumour removed and
was prescribed bromocriptine. This
treatment lasted for 18 years and then
failed to work, so I was given monthly
injections of Sandostatin, which I
still have.
At age 79, I had to give up my
interests, as neuropathy in my legs
became much worse and had started in
2000, but I still manage to visit the Oval
for cricket by taxi!
After reading various other stories
from acromegalics, I consider that I
have been very fortunate. I am looking
forward to the return of Australian Rules
at the Oval in November! ■
Pituitary life | summer 2014

20 Patients’ stories
Living with my little friend: Emily’s story
It has been two years since I was diagnosed with a
pituitary gland tumour. Two years in which so much has
happened, that I hadn’t had a moment to notice anything was
wrong. Once the medication started and my periods returned I
thought it was all good.
Then like a train out of nowhere I felt the most lost I have
ever felt in my little life.
Being a normally bubbly outgoing girl, I felt my personality
had run away, and left me with a grumpy stranger. This
moment of reality was terrifying as I realised that suddenly,
the side effects of ‘my little friend’ had caught up with me. I
thought no one understood, as unlike a broken leg that you can
see, my problem is hidden away (both a blessing and a curse).
I realised it was time to talk to people about how I felt and to
stop bottling it up. It wasn’t until I started to open up I realised
how scared I had been of the unknown. This year in May I
marry my best friend, a man I have always been able to talk
to about anything and I saw for the first time, I had stopped
talking to him and because of that I felt awful.
lowest point
My lowest point was crying for apparently no reason at
Christmas with a house full of laughter and fun; I found
myself in a quiet corner sobbing! HORMONES are MEAN!
It is a strange thing as sometimes it feels like an outer body
experience - I am aware that I am thinking “Pull yourself
together!” or “What’s wrong now Ginge?”
This was my turning point; I could not be this stranger
anymore. I had to find a way round it. So, 2013 saw a change
in me mentally and physically and I feel so much better; I
still have sad days where I can’t explain what’s wrong and my
emotions are much more heightened than they have ever been,
even on the medication. Don’t get me wrong, I am much better
with it than without - that person was horrible and around
wedding planning this can be dangerous! A serious case of
‘Bridezilla’!
I researched everything to do with hormones and the
pituitary and spoke to Macmillan and my doctor. I read The
Foundation’s website and blogs of other girls with ‘little
friends’ and felt so much better to understand a little of what’s
going on in my body and how others deal with it.
self esteem had returned
I changed my diet to include a lot more fresh vegetables and
fruit and cut down on caffeine; I upped my exercise and joined
the gym. Within a few months my self-esteem had returned
and I felt great for the first time in months. I realise now that
dealing with the problem is so much better than just going
with it. Ignoring it and just popping the pills doesn’t help
you understand what your body is doing and worrying about
potential side effects of the condition is crazy, when, if you
just talk about it there can be a light at the end of the tunnel.
staying positive
For me it has been strange to come to terms with the fact that
after the excitement of our wedding, we will have the reality
that if we want to have children we have to plan with my
consultant and discuss options, whereas our friends are just
getting pregnant and babies are popping out everywhere. It is
so important for us to stay positive and not let the hormones
take over; I am so excited for all my friends and hope one
day I will be as blessed as them.
Positivity is the best policy, it’s a shame it took me to
such a sad and lonely place to realise this.
There is not much support in my area for pituitary
tumours and it’s so great that there is a wealth of blogs
and forums out there, but for me, there would be nothing
better than being able to sit down with someone else who
understands and chat about it ■
Pituitary life | summer 2014

Patients’ stories
21
A patient’s experience of his
forthcoming surgery
I
must admit that if I had seen the
operations shown on television
recently, before my pituitary
operation in July last year, I would
have freaked out and cancelled the
operation.
The reason that I write this is due to
a year of hell, because of the disgusting
administration in the hospital I attended.
It was so bad, that three days before my
operation, I received a phone call saying
that I had already had the operation
in March (I told them that “I never
felt a thing”). The evening before
my operation, I received a phone call
cancelling the operation! Their reason
when I asked why, was a “hum and hah”,
then they said “they had no beds”?? This
was 15 hours before I should have had
the operation and it completely freaked
me out. I must admit I did hit the roof.
There is a lot more that happened and
the only good thing was the doctors, who
did a brilliant surgery. BUT, there was no
aftercare and the last seven months have
been very bad. It has taken that long before
I can even talk about it. I cannot even talk
to people about my operation as apart from
the surgery, the hospital was rubbish!
Incidents happened all the time,
from losing ALL the results of my tests
covering two months (luckily enough
we had copies). When I did go for the
hormone tests they took the wrong
patient out and rushed him back 10
minutes later and then asked for me.
‘Useless’ is the only word I can use
to describe the administration of this
hospital. It was so bad that even though I
wore a red wrist band telling them that I
was allergic to morphine, I was still given
it and I think this is why I was in hospital
for nine days and not five, as I was ill
through taking it.
Even having tests after the operation,
they came and took blood tests then
lost the results. We believe that this was
because they had me down with my
Christian name as my surname and we
told them so many times, but they just
did not listen. To be told in January that
I would have the operation within six
to eight weeks, as it was a big tumour
and the headaches were murder- then
to wait for six months, due to bad
administration, was a joke.
‘Horrendous’, is the only word that I
can think of when people talk about this
hospital. I am afraid that my wife and I
would never go back there as it triggers
off so many bad memories. We will be
getting in touch with the higher up in
the hospital, as we did tell the patients
complaints office but nothing happened.
This is why I think that a story as bad as
this should be in our magazine, as it must
be one of the most frightening operations
anyone could have and bad administration
such as this makes it much worse.
This was the most stressful operation
experience I ever had and I did expect a
better service from the hospital ■
In Memory
Mrs Jean Cox, a member of Oxford
Local Support Group and their group
treasurer for the past few years, lost
her battle with cancer in February and
passed peacefully away. Everyone who
knew her and her husband Peter will be
shocked and saddened at her passing.
Jean retired from the post of Treasurer
at their meeting in November. The group
say that Jean was a lovely character,
always positive and happy - she made real
contributions to our meetings as well as
her and Peter’s sterling work with our
finances and the group will miss her.
Mrs Hilda
Smith very sadly
passed away on
31st March. Hilda
was, with her
husband Alan, a
founder member
of the Liverpool
Support Group.
Hilda was one
of those unique people you always
hoped you would meet; her humour, the
affection and support she showed to her
fellow group members and her strength,
through her acromegaly and more recent
illness, were some of the things which
made Hilda special. Alan, who was her
soul mate, took great care of her and
she loved having her family around her.
Hilda wrote this poem shortly before she
passed away:
Death leaves a heartache no-one can heal
Love leaves a memory no-one can steal
Mrs Elizabeth Radford, from Oxford,
very sadly passed away in March. We would
like to thank the family for asking for
donations in lieu of flowers at her funeral
service and raising £342.50 in the process.
The family of David Lowe, from
Bradford, very kindly asked for
donations in lieu of flowers at his funeral
service and donated £240.00 towards
The Foundation.
Our thoughts, sincere condolences and
best wishes go to the families of all who
have sadly passed away in recent months ■
Pituitary life | summer 2014

22 wall of thanks
Keep on running:
This was the order of the day to our
fantastic London Marathon runners!
They included Liz Sampson, who
also ran the Brighton Marathon
the week before, and Fiona Hugill
(pictured). The team managed to
raise a sensational £1,500 between
them and we thank them for their
marathon efforts.
Run Ale’ Run:
Alejandra Aranceta donned her
trainers and ran the Edinburgh
Marathon this May in a very
impressive time. In the process
Alejandra has managed to raise a
phenomenal £600. Thank you Ale’!
Yorkshire Three Peaks
15 year old Lottie O’Leary and
her mum took on the Yorkshire
Three Peaks this spring. The
adventurous duo managed to
complete this gruelling trek in
a fantastic time of 11 hours;
helping to raise £1,015.00 for
The Foundation in the process!
Charity of the year :
We would like to thank members
of Royston Women’s Club who
nominated The Pituitary Foundation
as their official charity of the year
between 2013/14 and managed to
raise a staggering £1042, by holding
a variety of events, from cake sales to
coffee mornings! A great time was had
by all during the year and we thank
everyone for their generosity. Could
your group choose to support The
Pituitary Foundation in the same way?
If so, e-mail jay@pituitary.org.uk or
call 0117 370 1314
Net-walking:
The Pituitary Foundation held a
business networking event with a twist
when they asked the South Wales
Business community to escape the
boardroom for the Brecon Beacons.
Participants scaled South Wales’ highest
mountain, Pen y Fan, whilst networking
with some of the leading businesses in
the area. In total, this event not only
helped to introduce the charity to many
new corporate clients and a charity of
the year partnership as a result, but it
also helped to generate £2,500.
Elisabeth Keiner
came up with a novel fundraiser by
offering to prune her neighbours’ shrubs
for them this spring. This proved to be
a brilliant idea that was appreciated by
everyone in the community. As a result
£752.50 was raised for The Foundation!
Estate agents go the
extra mile:
Many thanks to the staff at Bradleys
Estate Agents who ran the Plymouth Half
Marathon as part of their ‘charity of the
year’ fundraising efforts. Rosie Ramsden,
Robin Burne and the star of BBC 2 series
“Under Offer: Estate Agents on the Job”,
Lewis Rossiter, raised just under £1,000
between them.
Our thanks to Eton Preschool
who held an “egg-stravagant”
fundraiser, sending pupils home
with eggs that they had to fill with
money. In total, the schoolchildren
raised the terrific amount of £300!
Springtime Tea
Our Windsor Fundraising group leader Gemma Simpson held a Springtime Tea in Eton
Wick Village Hall and managed to raise a sensational £472.00 Gemma also persuaded her
son Oscar’s school to hold a fundraiser for us, with more events in the pipeline. Thank you
Gemma for your continued support!!
Pituitary life | summer 2014

news
23
Essex Fashion Show:
thank you to 18 year old Charlotte Valledy,
who organised a sensational fashion show in
her hometown of Colchester, Essex. Charlotte
managed to raise a fabulous £1,270 in the
process!
Thank you
Charlotte.
The Fred Whitton
Cycle Challenge:
Four men from Doncaster took part
in this challenge, cycling some 112
miles for The Pituitary Foundation.
Dylan Wilson, Ben Wilson, Steve
Powell and Steve Dobson managed
to raise a whopping £1671 between
them. We hope the saddle sores have
eased now guys and we thank you
for your efforts!
Brighton & beyond:
Thank you to our team of six runners
who completed the Brighton Marathon,
helping to raise in excess of £3,000
between them. Pictured is Caroline
Thomas, who presented Jay Sheppard
with a cheque for £452.50.
Father and daughter
fundraising
- Thank you to Amy Piggot, who
not only volunteered her time
towards supporting our patient
support team, but also held a
Springtime Tea raising £48 in
the process. Many thanks and
congratulations to Amy’s dad,
Adam Piggot, who ran 100 miles;
yes, you read it correctly, Adam
RAN 100 miles in the London to
Brighton challenge. Adam, we hope
that the blisters have healed and we
thank you wholeheartedly for your
efforts in raising £2,000 for The
Foundation. This was a challenge
and a half, especially when you
consider that Adam was actually
injured beforehand but still had the
strength and determination to take
on this gruelling challenge!
Luxury brand shopping event
Introbiz Ltd in Cardiff hosted a luxury
brand shopping event in Cardiff with
brands including Porsche, Rolex and
many higher end brands. Guests arrived
on the red carpet and were treated to
champagne and canapés. The Pituitary
Foundation was the beneficiary of
the raffle at this event, which raised a
fantastic £420 towards our funds!
Congratulations and thank you to
Natasha Lawrence who ran the
Adidas Silverstone Half Marathon and
raised a fabulous £231.25.
Swedish coffee morning:
Our sincerest thanks to Eva Brewer,
who organised a Swedish-themed coffee
morning. Her incredibly generous guests
helped her to raise a sensational £270.
Thanks to
Simon Bates
who completed
the Brentwood
Half Marathon
raising over £500.
Trusts & Foundations
We are sincerely grateful to
The Cloth Workers’
Foundation who very
generously donated £10,000
towards our IT appeal. This saw us
reach our target and enabled us to
implement an entirely upgraded IT
infrastructure at the end of May.
Thank you to the Marsh
Christian Trust who kindly
donated £300 towards our funds.
The D’Oyly Carte
Foundation generously donated
£3,000 towards the production of
new versions of our Prolactinoma
booklet and our Pituitary Patients
Handbook. We thank them for
their support ■
Pituitary life | summer 2014

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The views expressed by the contributors are not necessarily those of the Pituitary
Foundation. All information given is general - individual patients can vary and
specific advice from your medical advisors should always be sought.
We do not endorse any companies nor their products featured in this edition.
© 2014 The Pituitary Foundation
• Registered company number 3253584
• Registered charity number 1058968
• Registered address: 86 Colston Street, Bristol, BS1 5BB
The Pituitary Foundation
86-88 Colston Street, Bristol, BS1 5BB
helpline@pituitary.org.uk
www.pituitary.org.uk
Editor of Pituitary Life: Pat McBride
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