Issue 32

Spring 2016 edition
Issue No: 32
£5.00 inc P&P
for non-members
Distress
Thermometer
update
Three patients
tell their
stories
Introducing
our new
staff
New App for
acromegaly
patients
Spring Time
Tea
Endocrinologist
interviews
pituitary
surgeon
Pituitary life | autumn 2012
www.pituitary.org.uk

2
news News
Come to our National Pituitary
Conference - 23 April
The Conference will take place
in Leeds and will offer NEW
workshop topics that have been
suggested by patients and MORE
medical speakers than in previous
years. A new ‘social evening’ will also
be held.
We have included condition-specific
sessions for acromegaly, Cushing’s,
prolactinoma and DI (run by specialists)
Perfectly pitched for ease of
understanding, highly informative
and great to meet some new
people”- quote from a 2014
Conference delegate
and other workshop topics include
weight, diet, fatigue, adrenal insufficiency
and sessions for younger patients and
parents. The Conference is also a great
opportunity to meet with over 200 other
patients and their families.
Currently, places are booking up
fast! We recommend booking as soon
as you can to avoid disappointment.
For full information please visit our
Conference webpage which is in the
‘Support for you’ section on our website.
This webpage also contains information
about booking for the new social evening.
How to book: You can book via our
website shop, or to book over the phone
please call 0117 370 1310, 0117 370 1316
contents
News 2-8
Local Support Group news 9
Professional articles 10-15
Patients’ stories 16-20
Raising awareness 21-25
Wall of thanks 26-27
or by emailing enquiries@pituitary.
org.uk. Alternatively, complete the flyer
booking form and post with a cheque
to THE PITUITARY FOUNDATION,
86 - 88 COLSTON ST, BRISTOL, BS1
5BB. Cheques should be made payable
to The Pituitary Foundation. The
bookings deadline is 15 April 2016.
(The social evening and B&B usually
need to be booked separately through
the hotel – please contact us or see the
website for details) ■
Awareness Month 2015
We are pleased to report that
2015 was the most popular
Awareness Month ever, with
a 59% increase in people involved
compared to 2014.
We sent out 385 ‘Get Red Flagged’
factsheets and 60 clinics were also
sent a ‘Get Red Flagged’ pack. We are
delighted that more patients with adrenal
insufficiency are now flagged on their
ambulance trust’s system, as needing the
emergency hydrocortisone injection.
Overall, during October there were 13
awareness stands and 11 awareness talks
given by participants. We had 19 requests
for packs from people planning ‘Go Red’
events. These events ranged from parties
to coffee mornings and participants wore
red, waved our red flags, and even sold
red cakes. Some ‘Go Red’ events
also helped to raise funds,
such as Catherine Gladwyn’s
‘Go Red’ day at her work
which raised £149.99
and William Savidge’s
party which raised £85.
Kristina Painting held
her annual fun day in Oxon
raising £858.30. Laura
Duffield, Area Coordinator,
raised a sensational £1003.30
from her annual Awareness
Month charity night. One of our
Volunteer Campaigners, Chloe
update
Pituitary Life | spring 2016

news News
3
on the Isle of Wight, gave an awareness
talk as part of her ‘Go Red’ event. Chloe
was very busy, as in addition to her talk,
her event included an awareness stand, a
raffle, and a cake sale with red velvet cakes
to fit with the Go Red theme. Chloe raised
an amazing £212.36 - here she is pictured
with her niece Sophie. Also pictured are
two Welsh paramedics (opposite page bottom)
supporting our Red Flag campaign at the
Cardiff Support Group meeting.
Through the appeal, and events that
took place, you helped to raise an amazing
£6,435.56 which helps fund the costs of
Awareness Month, including awareness
packs sent out, staff time planning and
running the campaign. A huge thank you to
all our participants for their hard work! ■
Patient
autobiography
Pituitary patient, Dan Jeffries,
has recently published an
autobiography “Me, Myself and
Eye” which includes references about
living with acromegaly.
Patients with acromegaly may be
interested to read about Dan’s experience
and his book can be ordered at
www.memyselfandeye.co.uk (NB: The
information and opinions within this
book don’t necessarily reflect those of
The Pituitary Foundation) ■
Campaigns and policy work update
The Foundation takes part in
regular policy work, campaigning
on key issues facing pituitary
patients to improve care and services. We now run three
official campaigns each year (see campaigns section on
our website) and we are also delighted to have a team of
Volunteer Campaigners who help us raise awareness in
their local communities.
This regular article keeps our members informed about our
recent activities. The main policy and campaign work highlights
to report on for this issue include:
l We have an exciting policy work success to announce! During
2015, The Foundation has been involved with the Scottish
Medicine Consortium’s assessment of Pasireotide (Signifor®),
a new medicine for uncontrolled acromegaly. The decision
was announced that Pasireotide will now be made available on
the NHS in Scotland which is excellent news. The Foundation
was involved through completing a patient group submission
report and we then took part in the PACE meeting in
Glasgow alongside various endocrinologists and assessors.
We were able to put forward the patient and carer perspective,
case studies, and information about acromegaly allowing the
assessors to understand the devastating consequences of
living with uncontrolled acromegaly. You can read about the
new medication at: www.scottishmedicines.org
l Recently, we have taken part in the same process in Wales
with the All Wales Medicine Strategy Group’s assessment
of the same drug, Pasireotide. We are currently awaiting the
decision.
l 2015 Awareness Month was the busiest Awareness Month on
record which saw many of you taking part in our Get Red
Flagged Campaign.
l The Foundation often helps to publicise research studies
that are being undertaken by external parties. Recent
examples include Rare Disease UK’s survey looking at
patient experience and an ophthalmologist research study at
the University Hospital of Wales, which collected patients’
opinions about a virtual clinic for sight and visual field tests.
l We attended the Rare Disease UK Patient Network Forum in
Cardiff to make sure we are up to date on Welsh health policy
so we can inform patients.
l We became a member of The Specialised Healthcare Alliance,
a coalition of patient-related groups and corporate members
who campaign on behalf of people with rare and complex
conditions in need of specialised care.
For any queries relating to campaigns and policy work please call
0117 370 1316 or email campaigns@pituitary.org.uk and Rosa,
our Campaigns, Volunteers & Events Manager, will be happy to
help. To find out more, or to see how you can get involved, you can
also visit the campaigns section of our website ■
Pituitary Life | spring 2016

4 news
Introducing new staff
Menai Owen-Jones, Chief Executive Officer
In the autumn edition of Pituitary Life, I shared with
you our plans to expand the charity which are underway.
The ultimate goal of all of the changes taking place in
2016 will be to provide more support and information to
pituitary patients and their families in the future.
I’m pleased to say that the planned expansion is going well.
We now have three additional members on our staff team,
whose contribution will be helping us to realise our plans for
the future of the charity. We will be recruiting a further two
staffing posts during 2016 to complete our new infrastructure.
Thank you for continuing your membership and for your
ongoing support of our charity. We are very fortunate to
have such committed members and supporters. Together we,
as staff, volunteers, members and supporters, can all do more
to improve the lives of patients and their families.
I’d like to welcome Sammy, Sarah and Emily.
Sammy Harbut,
Patient and Family Support
Coordinator
Hello everyone I am Sammy
Harbut, and I am lucky enough
to have been recently appointed
as the new Patient and Family Support
Coordinator. I will be assisting Pat
McBride in her role as Head of
Patient and Family Services and am
very much looking forward to meeting
members within our community.
I was (finally) diagnosed with
Cushing’s disease in 2010 after several
years of increasing ill-health, and had
trans-sphenoidal surgery to remove a
macroadenoma in October of that year.
I remain on hydrocortisone medication,
so can really relate to pituitary patients. I
wanted to ‘do’ something for the Pituitary
Foundation following my recovery, so
became a helpline volunteer in 2011. As
well as continuing in this role until my
appointment in October 2015, I have
become increasingly involved with The
Foundation in the last few years. I have
raised money through organising cake
sales, teddy bears’ picnics and Spring
Tea Time events, and in June 2015, two
days before my final Degree Conference
presentation I took part in the tandem
skydiving Big Challenge event. I also
attend the Salisbury Support Group
meetings, where I have made many
friends, and more recently have joined the
Cushing’s Support Group.
My background is within the Criminal
Justice setting, working as a Probation
Officer for 17 years, before returning to
University to train as an Occupational
Therapist, which I completed with a First
Class Honours degree in June 2015. During
my last year I wrote an article explaining the
value of Occupational Therapy (OT) for
pituitary patients, which was published in
the Spring 2015 edition of Pituitary Life,
and expanded on this by dedicating my final
University Conference presentation about
how OT could be used as another treatment
to support our patient community.
I have held various professional
positions over the years, also working as
a volunteer for the Prince’s Trust, Adult
Education Centres and for the Samaritans.
I even worked in a high security men’s
prison for three and a half years (a job I
loved!), so I am sure I will be able to use
my collective experiences to support our
patients, their families and carers.
I always describe The Pituitary
Foundation as my ‘second family’, so
when I was appointed to my new role I
felt that not only did I have a new job,
but ultimately that I was ‘coming home’.
I am looking forward to meeting as many
of you as possible at our Conference in
Leeds in April, but until then, please don’t
hesitate to get in touch.
Sarah Leighton,
Head of Finance and Resources
Sarah originally qualified
in Hotel, Catering and
Institutional Management and
subsequently worked for hotels and
catering establishments before finally
Pituitary life | spring 2016

news
5
returning to Bristol where she ran a
small hotel with her business partner.
After 10 years, and looking after her
two small children, she decided it was
time for a career change. She retrained
and began a small accountancy
services business based from home.
Over the course of 11 years, the
business expanded Bristol-wide and
faced many challenges along the way!
Sarah became associated with The
Pituitary Foundation in January 2015
when her company was invited to look
after the accountancy needs. Deciding
to move on to pastures new, Sarah took
up the opportunity of working with
The Foundation on a full-time basis in
December 2015. She has two now ‘grown
up’ children and in her spare time enjoys
singing with a local choir, gardening and
keeping in shape. She very much looks
forward to working with The Pituitary
Foundation.
Emily Mullen
Emily is originally from North
Yorkshire but moved to Falmouth
to study towards a degree in
Photography. Upon graduating
she moved to Bristol where she
completed a MA in Fine Art alongside
volunteering for various charities.
These experiences inspired her to
move into her first paid role in the
charity sector. Previous fundraising
roles include working for Bristol Old
Vic, the SS Great Britain and Action
for ME.
When not at work Emily spends most
of her time looking after her two children.
In her spare time she enjoys cycling,
running, baking and all sorts of arts and
crafts!
At The Pituitary Foundation, Emily will
be responsible for raising income from
Trusts and Foundations and managing
and developing the Membership scheme,
as well as its earned income activities
(lottery, raffles and merchandise). As this
is a new role, she is excited about getting
stuck in and making it her own! ■
DI awareness
campaign
We were very saddened to hear
of the death of David Powell,
in the later part of 2015. His
mother wrote and let us know that
David, a DI patient, was in hospital
for four weeks without being given his
desmopressin and this, Mrs Powell
says, caused him to have a stroke. Our
deepest sympathy and condolences to
his family.
We are very aware that education
and awareness is needed to be revisited
in hospitals, in fact for all health
care professionals who are caring for
someone who has diabetes insipidus.
An understanding of DI, appropriate
management of desmopressin with free
access to fluids is vital. Also, the message
of not to confuse DI with diabetes
mellitus. We will be raising awareness
around DI this year and we will be
advertising this soon ■
In loving
memory
of Sharon
Combe
We were shocked and very
saddened to hear that
Sharon had passed away
suddenly but peacefully on January
6, 2016. As our Edinburgh Local
Support Group Area Coordinator,
Sharon was well known and loved, by
many local patients in the area. She
gave a huge amount to this Group and
will be very much missed by all at The
Foundation too.
Our sincere sympathy and condolences
to her parents, Lillian and David, her
brother David, her sister Mary, and
her wider family. Taken too soon, RIP
Sharon ■
Art Competition
– update
We have a new deadline
for entries for a different
event than advertised
in the last edition. As before, we
are seeking an original painting
to be donated for the auction at
this event, with proceeds to The
Foundation.
Entries can be in watercolour,
acrylic, oil or printmaking. Your
painting should be sent to us as a
clear photo jpeg attachment, email to
pat@pituitary.org.uk no later than 1
July 2016. The winning painting will
need to be sent to our head office and
will be selected from three finalists’
paintings.
Entry fee is £5 per painting with a
maximum of two paintings per person.
This competition is open to patients
and their families only. Good luck! ■
Pituitary life | spring 2016

6 News
Free will Written
by Esther White
Creating a Will had never quite reached my ‘To Do
List’, partly as I felt that my worldly possessions
weren’t that extensive and that it was just another
administrative job that encroached on my time. This
all changed when the opportunity to take voluntary
redundancy was presented. I took it with glee as it provided
a new way to look at how I wanted to live my life, where I
wanted to live and what kind of work I would like to do.
As part of this, I felt I needed to get my affairs in order so
my administrative list suddenly grew. I allotted time to do this
during the first few weeks of my redundancy, where previously,
the space to address this would have been over the weekend.
At the time I was commuting and working full time, I was
protective of my precious weekends, which were given over to
outdoor activities, where possible, rather than being inside on
the computer, phone or going through papers sorting out boring
but essential administrative tasks.
I should make a will
I decided that really I should make a Will whilst sorting out house
stuff, as I would like to take control and decide how my property
and savings were distributed in the event of my death. I felt
that leaving this to one of my family to manage and administer,
without guidance from me, was not fair and that I should take
more responsibility, thereby making the process for those who
are left to administer things much clearer.
Googled ‘making a will’
I googled ‘Making a Will’ comparing a few sites, looking at ease
of access and price. I selected a well-known brand and began,
which was liberating as I had finally started the process and
yet it felt a little strange locating and inputting the information
online. Again, I was surprised at how painless this felt as I
thought it would be arduous but it wasn’t. It was quite standard
information – however I did feel uncomfortable about not being
able to speak to someone in person as this was solely an online
service. However, I wanted to go ahead with it and tick it off
the ‘To Do List’. There cost was just under £60, which was OK
as I thought that my Will would be straight-forward in terms of
sharing my wealth as there weren’t any complicated property or
joint savings account issues to manage.
Selecting a charity to apportion a percentage of your wealth
to came up and I instantly thought of The Pituitary Foundation,
as it is an organisation which provides such a useful resource.
Pituitary Life | spring 2016

News
7
It certainly helped clarify elements of my pituitary condition,
when reading stories by other people who have acromegaly. It
was invaluable to me and my family, especially during the early
stages of diagnosis and following my operation, also attending
the annual conferences, local networks, reading up on latest
treatments, it remains a comforting and supportive provider of
useful information and advice.
The charity number for The Pituitary Foundation was required,
although it was clearly stated in the magazine I wanted to double
check so that once I had completed the Will, I wouldn’t have to
return to it anytime soon, done, finished and off my list!
Leaving a legacy
Initially I emailed The Pituitary Foundation, received a quick
reply to my request for information and was also asked if I would
be happy to have a quick chat about my reasons for wanting to
leave a legacy to The Foundation, to help them understand the
motivation behind this. I was and Jay Sheppard (Fundraising
& Marketing Manager) gave me a call. My age came up in
conversation, as Jay explained that it was unusual to get a person
who is in their 40s to think about and put into action provision
for a legacy for The Foundation.
I must point out that I had a relatively successful operation
four years ago and currently not on any medication (though may
have to have monthly injections as it appears that the tumour
is making itself known, ugh!). I am fit and healthy and with no
imminent death sentence on the horizon – that is if you take
away my propensity for swimming in the sea throughout the
winter months (without a wetsuit) which friends and I do on a
regular basis along the Devon coast. Anyway, back to business
it was really good to talk it through and recall all the good things
that The Foundation does to improve the lives of people with
pituitary conditions and meeting a need.
Free will service
This extends to being able to offer members a free Will service
which The Foundation is keen to promote, and as sensitively
as possible. I hadn’t completed the commercial online Will
service, as I was still collating information (needed the charity
info for the Religious Society of Friends, as I am a Quaker) –
Jay said I was more than welcome to use the Will service that
The Foundation offered. Thereby saving me some money in the
process as it was FREE!
Actually, I thought why not use the money I would have spent
as a gift to The Foundation and use their free Will service where
my legacy would be useful some many years later - a win- win
situation which also made me feel good. It all felt right to me
as did me agreeing to Jay asking if I would be willing to write
and share my experience of The Pituitary Foundation’s ‘Free
Will’ service. I was excited by this and Jay started the process by
emailing Alyson Dyer, an Estate Planning Practitioner for Compass
Will Writers and making an introduction. From there, Alyson
made contact and we arranged to speak on the phone.
This made all the difference to my previous online experience,
though that was helpful to know roughly what was required. The
personal interaction was far more helpful and somehow sets
one at ease. We talked about what I wanted from my Will, who
would be involved and how best to approach this, what would
be left to family and friends, how to divide this and percentages
to the charities I had selected. She made it simple and clear. I felt
reassured by this process that I was speaking to a professional
Will writer who could explain why information was needed
and the best way to approach it. 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.
Over the weeks we emailed each other as I filled out the forms
and Alyson asked if I had considered certain aspects such as giving
something to executors of my Will, which I hadn’t considered as
they would be the administrative bodies carrying out my wishes
but weren’t beneficiaries of my Will. Alyson also advised how best
to divide the money that I leave in terms of percentages to the
beneficiaries and so that it may avoid undue confusion both now
and in the future. It was so helpful to talk this through, as I hadn’t
considered this or that I could have an additional executor in case
those whom I selected pre-deceased me or each other.
The form completed, I returned it via email for Alyson to
check. She explained that by its very nature the document
contains a large amount of legal “jargon”, which unfortunately
cannot be avoided. As an aid to understanding she provided a
‘Will Commentary’ and the offer to contact her directly via email
or phone was reassuring to enable me to seek clarity if necessary.
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. I
felt I could trust them to take my Will forward in a reputable,
reliable and professional way. For details of the Free Will that
Esther refers to, please see page 25 ■
Hydrocortisone
tablets
Our guidance is that your hydrocortisone tablet
is licensed for dividing or breaking. Auden
Hydrocortisone should be requested, as this
is scored and therefore has been formulated with the
intent that it can by divided.
Patients should ask their GP to name their prescription
Auden only (no substitution), as pharmacists can dispense
other brands ■
Pituitary Life | spring 2016

8 News
Peer support for you
“Every one of us gets through
the tough times because
somebody is there, standing
in the gap to close it for us”-
Oprah Winfrey
The pituitary journey can be
tough, confusing and often
lonely. There may be times when
you want to meet or speak to someone
who simply ‘gets how you are feeling’.
Or you may be seeking diagnosis,
or want to learn more about your
condition.
Sometimes, it helps to meet
others who have been there
too…
The Pituitary Foundation has a network
of Local Support Groups across the UK
and Republic of Ireland. The groups are
run by dedicated volunteers who give their
time to offer support and information to
anyone affected by a pituitary condition
living in their area.
“The support group is like a second family to
me now; we can talk freely about pituitary and
everyone understands.”
Meetings aim to give members
the opportunity to learn about their
conditions, both from specialists and the
experiences of others.
Sometimes it helps to talk to
someone who has been there
themselves…
The Foundation also runs a Telephone
Buddies scheme. We have 24 trained
volunteers who have first-hand experience
of living with pituitary conditions,
including a few mothers and carers who are
ready to offer support. The vast majority
of pituitary conditions are represented
amongst our volunteer Telephone Buddies
and they are there to listen to you and share
experiences. They do not give medical
advice but speak from personal experience
and offer helpful support. We can match
you with a Telephone Buddy who has the
same condition or has experienced similar
issues. Some Buddies accept emails too, if
you prefer this.
Sometimes it helps to talk to, or
email someone who can offer
general pituitary support…
Our Patient Support & Information
line, run by nine trained volunteers plus
patient support staff, can help with all
sorts of general questions, from travel
insurance to where is your nearest centre
of pituitary excellence. Operators are
trained to give pituitary information and
offer support if you just need to talk,
plus you can email us your questions too.
Last year we answered 2,423 helpline
enquiries.
Sometimes it helps to talk to
our Endocrine Specialist Nurse
who can offer clinical pituitary
support…
Alison Milne has over 25 years’
experience and her service is for your
medical questions. You will find Alison
most knowledgeable and caring!
Sometimes it helps to read
about your condition…
Our website has lots of information for
you to read at your leisure, or you can order
booklets and free resources. Last year we
distributed 5,339 booklets! Our Forum
and Facebook page are other useful places
to post and exchange messages with other
patients.
To help you find the right
service:
l To talk to us, find out about your
nearest Support Group or to be
matched with a Telephone Buddy,
please call our Helpline on 0117 370
1320, (Monday – Friday, 10am - 4pm)
or email helpline@pituitary.org.uk
l If you would like to speak to Alison,
our Endocrine Specialist Nurse, call
her on 0117 370 1317 on Mondays,
10am to 1pm and 6pm to 9pm, also on
Thursdays 9am to 1pm
l Visit our website at www.pituitary.
org.uk
l Visit our Facebook page at www.
facebook.com/pituitaryfoundation
And, like the title of the song
“You’ll never walk alone” ■
Pituitary life | spring 2016

Local Support Group News
9
Some brief updates from a few
of our Support Groups around
the UK. For information about
our Groups’ meetings near
you, please see our website,
contact Rosa Watkin on 0117
370 1316 or email helpline@
pituitary.org.uk
Leeds
The Leeds Group meet nearly every
month and have all their 2016 meetings
planned, plus they’ll have a stand at
our Pituitary Conference in Leeds this
April. The group always welcome new
faces, so do feel free to go along and
gain support and information. The
group is also looking for volunteers
who may have a few hours each month
to help out on the committee. If you
would like to support them please
contact Sally on 0113 2636594 or email
sallyrob@talktalk.net
Newcastle
The group’s last meeting saw an increase
in numbers. Martin, the coordinator,
organised some great media coverage
recently in his local chronicle about
the group and pituitary conditions
in general. At their January meeting
they had a consultant speaking, Dr
Nayar, who gave a presentation on the
pituitary gland and answered everyone’s
questions. For more details about the
group email crosbys@hotmail.co.uk
or ring our Helpline on 0117 370 1320.
Liverpool
An enormous thank you to The
Liverpool Support Group for their
generous contribution of £1000. We
are very grateful for this donation
which the group have asked to be put
towards the print costs of our patient
booklets. We would also like to thank
Hilary Peel, who recently stood down
as group secretary due to work and
family circumstances. Hilary has been
secretary for 15 years and we are very
grateful to her for her hard work.
Thanks to our generous Solent
Group who have kindly pledged
£300 to launch our ‘Spring Appeal’.
York
The York Support Group is run by
coordinator, Dominika, who joined
us this year and is also a Volunteer
Campaigner for The Foundation. The
group’s first meeting took place in
October and was well attended, where
Dominika gave a presentation about
The Foundation’s services. Dominika
also got involved with Awareness
Month, organising local awareness
activities including a cake sale and
awareness stand at the university raising
an amazing £332. Thanks Dominika!
At the November meeting there was a
discussion about hydrocortisone. The
January meeting welcomed pituitary
neurosurgeon from Hull Royal
Infirmary, Dr Anuj Bahl. Dominika
is pictured here at her awareness cake
sale ■
Dominika
Our ambassador
gets married
We would like to take this opportunity to
congratulate our Celebrity Ambassador, Mike
Crawshaw. Mike married his long term partner,
the beautiful Kerry Fermor, in the summer of 2015 ■
Pituitary life | spring 2016

10 Professional articles
Pituitary Distress Thermometer patient
manual launch By Dr Sue Jackson
I’ve talked about the development of
the Pituitary Distress Thermometer
before. The last time was in the
autumn of 2013 when we completed
the first successful pilot of the
Pituitary Distress Thermometer
(PDT) with patients and staff at
the monthly multidisciplinary team
(MDT) pituitary clinic at Hurstwood
Park Neurological Centre in Sussex.
Arranging testing in other hospitals
has proved tricky, so instead we are
developing a patient manual that goes
with the PDT. The manual, which will
include a copy of the PDT, will enable
individuals with a pituitary condition
to use the PDT in collaboration with
their medical team, if they want to.
Firstly, a brief reminder about the
distress thermometer itself; a distress
thermometer is a structured way for a
patient to discuss with an endocrinologist,
nurse, GP or other health care professional
(HCP) some of the concerns (practical,
emotional, physical and psychological)
that they may be experiencing. A distress
thermometer offers patients a list of
common difficulties, and is then used
collaboratively by the patient and HCP
to discuss options for dealing with the
issues of greatest concern the patient is
experiencing at the time of the consultation.
Following extensive background research
into the kinds of problems that patients
with pituitary disorders experience (as an
aside, thank you to the 900 of you who
completed the Wellbeing Survey we did
as part of the generation of the Pituitary
Distress Thermometer problem list),
a Pituitary Distress Thermometer has
been formulated by Dr Sue Jackson (see
Figure 1).
Figure 1: Front page of the Pituitary Distress Thermometer:
Please cirle the number (0-10) that best
describes how much distress in general you
have been experiencing over the past week,
including today.
Thermometer
Patient’s name:
Ranking
Symptoms
Date of treatment review:
Second, if any of the following has been a problem for you over the past week, including today, please tick
the box next to it. Leave it blank if it does not apply to you. Then rank your top 4 difficulties (1 would be
the biggest problem, 4 would be your forth biggest concern)
Ranking
Symptoms (continued)
Generally unwell
Headaches
Visual disturbance
Weight gain
Feeling swollen
Change in apetite
Constant thirst
Frequent urination
Constipation
Fatigue/tiredness
Difficulty concentrating
Memory problems
Dizzy spells
Hot flushes
Poor temperature regulation
Sleep apnoea/snoring
Pain
Leg pain
Back pain
Muscle aches
Muscle weakness
Tingling in hands and feet
Appearance
Hair growth/hair loss
Spots
Skin dry/itchy/greasy
Thin skin
Loads of dry skin on feet
Burn easily in sun
Unable to drink alcohol
Low libido/sexual desire
Infertility
Practical problems
Medication management
More visits to the loo
Getting around
Emotional problems
Nervousness
Worry
Mood swings
Stress
Other problems (please state)
Pituitary life | spring 2016

news Professional articles
11
Patients rate the general distress they
have experienced over the past week out
of 10; they tick every problem from the
list that they have experienced over the
past week; they rank their top 4 problems
(the most concerning problems out of
those they are experiencing).
As you can see, the PDT lists 39 items
comprising 32 symptoms, 3 practical
problems and 4 emotional concerns.
There is also space for the person using
it to add any additional problems. The
patient manual will start with a copy of
the PDT, and then move on to providing
some information on either self-help
strategies, or advice on where to find help
for each of the 39 items on the PDT.
We will also include some information
on other useful information, such as the
symptom clusters for each of the pituitary
conditions.
The current plan is to launch the
PDT patient manual at The Pituitary
Foundation Conference in April at
Leeds. All being well, we will have copies
of it ready by then to give to delegates. We
are also planning to have a version that
can be downloaded from The Pituitary
Foundation’s website after the annual
conference. Hopefully patients with a
pituitary condition will find this new
resource helpful, and I look forward to
talking more about it at the Conference ■
Initial pilot study of
the Pituitary Distress
Thermometer (PDT)
Quotations from patients in reply to
the question ‘Do you like the Pituitary
Distress Thermometer?’
“It’s a really good idea; it jogs the memory
about issues experienced.”
“It was useful, a good thing to do it as it
brings things to mind and I don’t always
remember everything.”
“I had time to fill it in and it didn’t cause
any stress, you realise what symptoms you
have when you see them written down which
is helpful.”
A Mobile App to empower patients with
acromegaly - My Acromegaly Manager App
Margaret Roberts, Endocrine Specialist Nurse, The Christie, Manchester
Acromegaly can be a difficult
disease to manage for both
patient and healthcare
professionals. The app ‘My Acro
Manager’ has been launched to help
patients be involved in the decisionmaking
around their own treatment.
The aim of the app is to help patients,
nurses and doctors work together to
improve the outcomes of this disease
which can include numerous problems
around social wellbeing and treatments.
My first experience of the app was
prior to the primary launch. I was able
to view the app and then download its
contents, allowing me time to familiarise
myself with its workings. I was then given
time to discuss it with patients, endocrine
nurses and doctors alike. I obtained some
very positive and constructive feedback
from those I spoke to.
The overall view was that it is a very
good tool for empowering patients to
take more control of their own journey
with acromegaly, in conjunction with
healthcare professional and GP surgery. It
is as though it gives the patient permission
to ask questions and to really be involved
in their treatment decision making.
The app gives patients the ability to
record symptoms, test levels e.g. growth
hormone, IGF-1, HbA1c, weight and
many more. Graphs are then created so
you can see your progress toward the end
goal. There is a ‘Medication’ section to
record all medications taken and reminders
for when to reorder prescriptions. There
is even a section to take photographs
of clinic letters, appointment letters and
an area to list the questions you would
like to ask, and so much more. There are
many helpful features of the app and the
patient can choose to use as much as they
feel comfortable with at any time. It is very
important when first downloading the app
to become familiar with what it has to offer.
It was felt it was an excellent tool
which would allow patients to follow their
journey, most felt it would be of more
benefit to newly diagnosed patients but
they did feel it would be of great benefit
to everyone using it to suit each person’s
needs. The more
mature patient felt
it would be more
suited to ‘younger’
people generally or
specifically the more
technologically savvy
amongst us. It could
also be used by relatives
to help their family
member.
We have gained
opinions from our
patients and overall they
are really delighted with the app and the
opportunity it gives to help manage their
own condition.
The app has been created by Novartis
Pharmaceuticals and is available free of
charge on the Apple App Store and Google
Play. Just search for myacromanager or
via the website www.novartis.co.uk/
myacromanager.shtml
This review was requested by Novartis
Pharmaceuticals. The views expressed are
solely those of the author ■
Pituitary Life | spring 2016

12 Professional articles
Interview
Mr Michael Powell, a well-known pituitary surgeon and a
member of The Foundation’s Medical Committee, was interviewed
about his career by Prof Ashley Grossman (endocrinologist) on 5
September 2015 at his home in North London.
Michael was the senior neurosurgeon at the National Hospital for Neurology and Neurosurgery in London until
his retirement in 2012. He studied medicine at Oxford, where he met his wife, Jenny, now a (retired) GP. After
Oxford, he went to the Middlesex Hospital Medical School and trained in neurosurgery in Bristol and then
later at the National. He was appointed as a consultant neurosurgeon in 1985, initially to Middlesex/UCLH, the Royal
National Orthopaedic and to the National Hospitals.
Doctor Michael Powell
A: At first you really weren’t directly involved with the
pituitary, you did a lot of work on cerebral and spinal
problems, did you not?
M: Yes, part of my initial consultant post was to do spine
surgery for the Royal National Orthopaedic hospital, but I
had trained with the greatest trans-cranial pituitary surgeon
who is really my role model, who I have tried to emulate
the things he taught me in how you manage a practice - a
man called Lyndsay Symon, who was a wonderful technical
surgeon. I had also been lucky enough that having come
from Bristol, where I was allowed to do trans-sphenoidal
surgery as a registrar; I was allowed to do I think around
20 operations in Bristol as first surgeon, not just assisting.
Then, working with my two other bosses in the National
who had both started to do trans-sphenoidal surgery - and
I have to say not terribly well - but they did it and when I
arrived back at the Middlesex as a new consultant, one of
the first people I met there was Professor Howard Jacobs,
who was Professor of Endocrinology and who had been a
senior registrar when I was a medical student. I liked him
very much and got to know him well when I was a medical
student. He was a very easy man to get to know.
At the end of the first year as a consultant there, the
pituitary surgeon at the Middlesex, who was a very senior ENT
Professor Ashley Grossman
surgeon doing transsphenoidal for Sir John Nabarro, basically
bottled out: he had an unfortunate death on the table during a
trans-sphenoidal, he opened the carotid artery and after that,
every time they showed him a case, he said ‘no, it has to be done
by the neurosurgeons by craniotomy’. I said to Howard Jacobs,
‘Do you know I can do trans-sphenoidal surgery?’ and he said
he is never going to tell a surgeon how to do an operation!
Within quite a short while, I found myself doing endocrine
pituitary surgery at the Middlesex and Howard was telling all
his mates, which was great because he had lots of influence.
Then back at the National I was working with one of my
now consultant colleagues, who had formed a friendship
with one of the professors at UCH, John Betteridge, with
whom he was doing endocrine pituitary clinic; I said why
don’t we combine them all, and Alan Crockard (who is much
more interested in other things) and basically he gifted me
trans-sphenoidal surgery from UCH, so I then muscled in
at the National Hospital. I discovered there was a pituitary
clinic run by very famous neurologist called Ian MacDonald,
whose sessions included the Moorefields, so he got lots of
big tumours which he doled out to the three consultant’s at
the National one by one; now I joined as a fourth, so I got a
quarter. I said to Professor MacDonald, ‘Would it be helpful
if I joined you in your monthly Pituitary Clinic?’ to which he
Pituitary life | spring 2016

Professional articles
13
replied “dear boy what a wonderful idea”.
The endocrinologist was Stafford Lightman, who came
over from Westminster at that stage, so I got to know
Stafford well and before very long I got all the referrals for
pituitaries at the National as well, so really, within about four
years, I had suddenly gone from nothing to perhaps some
30 or 40 referrals per year. This was a huge number in the
80s, there weren’t many people doing that sort of numbers.
It just built from there, and I think probably because I have
always enjoyed talking both to patients and to other clinicians,
particularly endocrinologists, and perhaps I am good at that
sort of relationship, I have always been perceived as a person
you could work with, and it has built from there.
A: Someone you could do business with.
So endocrinologists are not just a necessary evil?
M: Absolutely not, but the main thing is that I have always
enjoyed endocrinologists’ company, obviously you are a
very good example; in fact, you probably may or may not
remember we first met coming back from the European
workshop in Venice, we shared a plane back and for some
reason we were sitting together and you gave me a lift back
to my home here in North London on the way back from
Heathrow because you were addicted to having your car at
the airport, and I left my bag. We then of course discovered
our family connection, so it goes back a long way.
A: You have now trained, having been the foremost
pituitary surgeon, certainly in the UK, a very large
number of pituitary surgeons in the country?
M: That’s right, I think I was very lucky in my training in that I
worked with surgeons who didn’t know how to say ‘no you
can’t’ when I said could I do a bit of the operation, so I have
always thought that was very good. If you always get your
‘hands on’ at any level during an operation, you always learn
very quickly, so I always found it very easy to take people
through bits of operations, albeit pituitary surgery or anything
else. I have encouraged my trainees to at least do parts of
operations right from the outset and as a consequence, the
trainees know that if they can get a six month appointment
with me they get a lot of trans-sphenoidal surgery.
A: Do you think this type of training has changed in recent
years?
M: It has, because with the increasing number of consultants,
which is a good thing, and the fact that you can’t tell a consultant
surgeon what to do, it has in fact reduced and with the increasing
number of trainees, operating training experience has actually
reduced the number of cases that the trainees get to do. There
is no redress against a consultant who doesn’t allow his trainees
to do any actual surgery. Assisting can only take you just so far
in my view. But I have always liked taking trainees through bits
of operations, and they certainly know that and they always
want to come and work with me.
A: So apart from training many of the major pituitary
surgeons in the UK, what have you been involved in, in
a more international basis?
M: I should say on a national basis, I was on the National Training
Committee for the last ten years of my full time NHS career; I
ended up for about three and half years as the chairman of the
National Training Committee, so I was very much involved
in all the processes that the National Training went through,
starting with the changes introduced by the various reforms,
and having to recognise that and sudden mushrooming of
trainee numbers and it was I who set the line in the sand that
trainees had to do a certain number of cases at the time of
getting their certification at the end of training.
Being at the National has always been a very good place
to interact with foreign neurosurgical names who wanted to
come because of the historic association with our hospital,
and perhaps the first big steps were meeting Ed Laws (the lead
US pituitary surgeon) who was at that time in Washington
DC. I found that we had a lot of common interests outside
of medicine, and formed a very close friendship with Ed and
his charming wife, Peggy. Then almost exactly the same time
as that happened, I also formed a friendship with Rudolph
Fahlbusch, the leading European pituitary neurosurgeon
who was visiting London at the very end of my training, so
when I was newly appointed as consultant; he and Ed both
invited me separately, to go and visit their units.
When I went to visit Rudolph Fahlbusch, I was astonished
that in the space of two days, I assisted him in seven transsphenoidal
cases; it is amazing, you can’t imagine doing that
nowadays, but he was the senior professor and the head of the
whole neurology clinic at the University of Erlangen and what
he said went. I scrubbed in and assisted him in seven transsphenoidal
cases which is quite incredible, I had never seen
three cases done in a day, while he did four in one and three on
the other. I picked up a lot of his techniques which were quite
radical at the time. I thought he was a brilliant technician and he
was also very logical in the way that he took the different stages
of the trans-sphenoidal surgery and which is really what I have
adopted. Pituitary surgery is terribly straightforward if you take
it step-by-step; there are about six different steps and if you
teach a separate bit and link them altogether you can find you
can do a trans-sphenoidal case in 30 minutes, which is unlike
the four hours when I was in training.
A: Now you are all very senior neurosurgeons, some still
working and some retired, and all went through the
microscopic technique. The current vogue amongst the
younger surgeons is just to use an endoscope; although
this is rather a technical point, do you think there is an
advantage?
M: I do; I struggled to learn the endoscope technique and I
bought my first endoscope out of donated money in 2000,
but I never really got on with it because it slowed me down
so much and my lists depended on throughput and keeping
Pituitary Life | spring 2016

14 Professional articles
your waiting list under control. But my best trainees have
always picked up on it and that is what they do now, although
I think in probably about 75% of cases it makes absolutely
no difference which technique you use. It makes a difference
for the very biggest tumours which are complex in shape,
and I certainly think it’s the best technical approach to use
in craniopharyngioma, especially the suprasellar ones that
extend up into the hypothalamus - much better than the
technique that I developed using the microscope.
A: At your peak, how many operations were you doing a year?
M: Probably about 220 or something like that.
A: So you must have been doing the lion’s share of pituitary
operations in the UK?
M: I was doing somewhere between 17 – 20% at one stage,
according to the statistics. Going back, the National Training
Committee had the statistics from each neurosurgical unit in
the UK and I knew that we were doing about a 1,000 transsphenoidal,
or just slightly over, if you took every single one
of the 35 neurosurgical units in the UK.
A: What do you think of the current state of play of
pituitary surgery in the UK?
M: I think it is actually continuing to get better, for the first reason
that neurosurgical units now identify quite clearly who the
pituitary surgeon is or should be, and that multi-disciplinary
clinics usually separate pituitary from standard routine neurooncology
operations. They treat them slightly separately, which
I think is correct, because although it is technically a ‘cancer’,
it’s clearly not and there are too many other factors that make
it important, so neurosurgeons aren’t randomly doing transsphenoidal
which a lot of them did in the past.
We as professionals all know the unfortunate events that
occurred in Manchester which were so publicised: I think
going back into 1996/7 where something like 16 surgeons
ended up doing a maximum of 7 cases per year and they
weren’t curing anyone, it was absolutely disastrous, whereas
nowadays I think with proper training and proper multidisciplinary
approach, surgeons aren’t just having a go when
they feel like it, and I think that is all for the patients’ good.
A: Just tell us a little bit about your family now: you met
Jenny back in Oxford.
M: Yes, we met as actors in the ‘pre-clinical’ medical school review.
We didn’t get together immediately but at the end of the
summer term of 1971, I bought a Landrover with a college
mate of mine and we advertised for people to join us on an
expedition to Afghanistan; Jenny was one of the people who
came on that and we have been together ever since.
A: And she became a GP?
M: That’s right, she initially was going to be a physician but
somehow she morphed into becoming a GP when we were
in Bristol, which worked very well, and she retired actually
slightly before me at the age of 60.
A: You have a number of daughters?
M: We have three daughters who are all good fun: my eldest
daughter is trying to become a film director at the moment,
my middle daughter is a music/voice training teacher and
my youngest daughter hasn’t really decided what she wants
to do other than running an internet company making nail
transfers, which she says gives her pocket money.
A: What are you doing now that you have officially retired
from the NHS?
M: It was a very interesting moment. I retired from my NHS
position completely in 2012, but I ended up last year (2014)
doing two extended locums in Haywards Heath and Plymouth
for various reasons, just doing purely pituitary surgery. However,
although I enjoyed the multi-disciplinary clinics, I didn’t actually
enjoy the surgery very much because it was working with very
chaotic NHS teams; although everybody was very nice, it all
took far, far longer than I was used to, so I have been unable to
revalidate this summer.
I am now officially off the UK specialist register, and I am now
no longer licensed to practice, so I am out of the NHS completely
and I can’t practice in the UK, although I am still doing teaching
abroad. In the summer I went to Uzbekistan which I had been to
many, many times in the past, as you know, where we do lots of
surgery, but I have introduced two of my best former trainees so
I think they will carry on that training there.
The year before I went to Myanmar, Burma, where
I did surgeries in both Rangoon and Mandalay which was
very exciting; I like the Burmese very much, and then
vague invitations for going to India and I have still got an
attachment to Cyprus which I will probably hand over to my
Oxford trainee, Simon Cudlip, probably next year. Although
I don’t know that the neurosurgeon in Cyprus knows that
yet, but when I go there soon I will let him know that I think
this might be the best way forward from his point of view.
A: What about any other interests?
M: Well, I have many; my most famous other interest is cooking
- I have been cooking all my life, since the age of five in
fact, and luckily I am allowed to do it at home because Jenny
doesn’t cook; well, she can just about, but terribly in my
view, but of course she doesn’t like to be reminded of that.
In 1983 I came second in the Observer Cook of the Year
competition, which gives you a certain notoriety. I am very
good at it, so that is my main hobby, but I have a collection
of old vehicles that I like, (I am a petrol head) so cars and
motorbikes. I have been trying to play jazz saxophone for
about 20 years. The trouble is, although I enjoy it very much
I don’t think Jenny enjoys it so much and I think, at heart,
I have not got a lot of talent, but I keep trying! So I have
plenty of things I like doing.
Mike, thank you very much indeed ■
Pituitary Life | spring 2016

Professional articles
15
Informal, everyday mindfulness
By Dr Sue Jackson
You might have heard about
‘mindfulness’ or ‘mindful living’.
As an approach to help with
stress, pain and illness, it started life
with Jon Kabat-Zinn’s stress reduction
programme at the University of
Massachusetts Medical Centre. His
book, “Full Catastrophe Living”
introduces the full stress reduction
programme and, although a large book,
is well-written and easy to read. Whilst
his book, “Wherever you go, there you
are” talks about using mindfulness
meditation in everyday life.
So, what is ‘mindfulness meditation’?
Lots of people get put off by the word
‘meditation’ in the title, but in mindfulness,
meditation merely means ‘that which you
are paying attention to’. If you think
about it for a minute, what does your head
do when you’re doing routine tasks during
the day? If yours is anything like mine,
it lets your body take care of business
on automatic pilot while it takes the
opportunity to think about other things.
If I’m stressed or anxious, it will bring to
my attention all the things that have made
(or will make me) stressed and worried;
if I’m sad, all the things that have made
(or will make) me miserable. As Kabat-
Zinn says, this means that we effectively
sleep-walk our way through life, especially
the routine stuff, physically present but
mentally absent and routinely stuck in our
heads at the mercy of whatever thoughts
it has decided to focus on.
Mindfulness is a counter to that. It’s
about taking some control back from
your head and making a choice about
what you want to pay attention to. It’s also
about the way in which we pay attention.
Mindfulness is about developing friendly
curiosity. It’s about paying attention
and seeing what something is really like,
rather than assuming that we already
know what something is really like. In
“Full Catastrophe Living”, Kabat-Zinn
explains all the components of mindfulness
meditation. In short, there are two ways
to practice mindfulness – formally and
informally. Formally, as in making a specific
time during the day to sit down and choose
to work your way through the various
practices; and informally, where you choose
to practice being friendly and curious about
random things during the day.
A lot of meditation books tell you that
you have to start with at least 10 minutes
practice, and I think this puts a lot of
people off. If you’ve not done it before,
10 minutes is far too long, and you’ll end
up thinking and feeling that the approach
isn’t for you. I get my clients to practice
little and often, and to start with, their
“meditations” are less than a minute
long. What I ask them to do is to think
about their five senses (sight, sound, taste,
touch, and smell), and get them to identify
what they like doing most that is related to
those five senses. Once we have a list, we
work on a rough plan of when they might
try paying proper attention to these things
regularly during the day.
Say someone decides that they want
to try mindfulness with their morning
cup of tea – what might that be like? I
usually suggest that he/she pays attention
to their first couple of sips of tea. The
idea is, that instead of drinking the tea on
automatic pilot, you use friendly curiosity
to find out what this morning’s cuppa
is like. You take a bit of time to look at
it – what colour is it (is tea various each
time you make it)? What is the colour of
the tea in relation to the mug - believe
me, it makes a difference? Can you see
the steam rising? Is it making patterns,
or just swirling above the cup gently?
Can you feel the warmth when you pick
up the cup? At what point can you feel
the heat of the tea on your lips as you
bring the cup to your mouth? As the tea
enters your mouth, does your mouth feel
hot all at once, or is a gradual warming
that slowly spreads through your mouth?
How does the tea taste? Can you feel the
warmth spread through your throat as you
swallow the first sip?
All this in under a minute? Yes, and you
can do it with anything. You are supposed
to practice it with an open mind. Rather
than entering into it with an “I’m doing
this because it’s supposed to be good
for me”, doing it with a spirit of friendly
curiosity, “I don’t know what this will be
like, but I’m willing to find out.” ■
Pituitary Life | spring 2016

16 Patients’ stories
Diana’s story: Plenadren – tackling the
highs and lows
After suffering from many
months of intense migraines
and strange visual disturbances,
I was sent to King’s College Hospital,
London. Within a few hours, the
incredibly kind and professional team
at King’s had diagnosed me with a
craniopharyngioma, and I had surgery
the next day.
After a second operation and radiotherapy,
my symptoms were much reduced,
but my pituitary gland was no longer functioning
normally. My consultant explained
that a normal functioning pituitary gland
results in low levels of the hormone cortisol
at night, which build up to a peak in
the early morning and fall slowly during
the day (see Gail Weingartner’s article in
issue 31). As I could no longer produce
enough cortisol, I was prescribed 20mg
of hydrocortisone daily, split into two
doses, taken at 7am and noon.
All this treatment left me quite
weak initially, with little stamina and a
strong desire to take a nap three times
a day. However, with the support of
my wonderful husband and family, I got
stronger and, six months after my first
operation, I returned to work.
Not surprisingly, I found working a
full day quite demanding, particularly
in the afternoon when I felt fuzzy
and tired as my cortisol levels fell.
After mentioning this problem to my
consultant, he recommended splitting my
hydrocortisone dose into three, and I also
decided to start and finish work earlier to
match the pattern of my cortisol levels.
This new regime helped, but things were
still a bit of a struggle. I was quite buzzy
in the mornings – sometimes I felt that
my legs were running away with me on the
way to work! On the other hand, by the
late afternoon I would start to feel sleepy,
then irritable and then tearful. Managing
these mood swings everyday was difficult
and affected how long I could work, while
in the evening I felt apathetic and unable
to do much.
Having a scientific background, I
thought that these troublesome symptoms
could be reduced if there was some way
of spreading out my cortisol over the day
to mimic the natural pattern, so I was
intrigued when Pituitary Life reported that
a slow-release form of hydrocortisone was
coming on to the market. When I next
saw my consultant, we discussed whether
Plenadren was right for me and he agreed
Pituitary Life | spring 2016

news Patients’ stories
17
to prescribe it.
For the last 18 months, I have been
taking one dose of 20mg modified-release
hydrocortisone (Plenadren) first thing in
the morning. The improvement was
immediate. On the first day, I felt slightly
wobbly when I didn’t take my normal
lunchtime dose, but this soon passed
and never reoccurred. As the afternoon
wore on, I still felt lively and managed
to keep going into the evening. Within
a week, I felt I could detect a reduction
in the facial puffiness associated with too
much hydrocortisone. My appetite was
also less ferocious, and, over time, I was
able to get back to the weight that I had
been before my operation. The biggest
plus for me has been a reduction in the
severity of mood swings and the ability
to concentrate in the evenings. I’m still
not completely back to my old self, but
much closer to it – I’m still a little buzzy
in the mornings and I’ll take a nap in the
late afternoon if I can fit it in. However,
overall, I feel as if changing to Plenadren
has given me back the missing third of my
waking life.
I was inspired to write this story after
reading Gail’s helpful article about dividing
her hydrocortisone into six doses over the
day starting at 3 am and finishing at 11 pm.
In my view, Plenadren is another way of
achieving a similar, more natural, pattern of
cortisol. However, while I feel that I have
benefitted greatly from taking Plenadren,
there are two important reservations in
terms of its effectiveness and cost.
In terms of effectiveness, Plenadren
was approved by the European Medicines
Agency (EMA) in 2011, saying:
‘Plenadren has been designed to better
mimic the physiological cortisol profile
and allow once daily dosing in order to
increase patients compliance. Although
the clinical data is insufficient to make
any claims on improvements with regards
to metabolic effects with Plenadren, a
once daily dosing regimen is considered
to be of benefit for some patients in
the context of convenience and patient
compliance considering that treatment
of patients with adrenal insufficiency is
highly individualised.’
The EMA documents also describe
Plenadren as an ‘orphan’ drug – one which
treats a rare disease, for which widespread
trials may not be financially viable. This
is an important issue as Plenadren doesn’t
seem to suit everyone – some people who
try it feel that it doesn’t provide enough
cortisol and they have returned to the
ordinary form of hydrocortisone. This
is worth bearing in mind, as the EMA
says that in Plenadren around 20% less
cortisol is absorbed in total over the day.
The second issue is cost. At the time
of writing, information from the NHS
suggests that a month’s supply of Plenadren
costs £242 compared with £64 for
hydrocortisone, and as a result, Plenadren
may not be available on the NHS in some
areas. The GPs in the two areas where I
have lived, in London and Sussex, have been
willing to prescribe Plenadren, although I
recently went through a worrying period
where it looked as if it might be withdrawn.
Happily it was not.
This means that although Plenadren is
the first new formulation of hydrocortisone
in years, there is a risk that no-one will
fund studies to understand the extent to
which it might benefit people with adrenal
insufficiency. This risk may be even greater
if the drug is not available on the NHS. I
believe it will be a missed opportunity if
people aren’t able to have access to the
information or the medication to see if
Plenadren can help them.
Read more at: www.ema.europa.eu/
ema/ (search for Plenadren)
Diana’s consultant added:
Plenadren has been a very helpful
treatment for some of our patients,
improving energy levels and quality of
life, without promoting weight gain.
Conversely, some patients feel that
Plenadren does not give them true 24
hour replacement of cortisol or they
prefer to remain in control of tablet
timing during the day. The increased cost
of using Plenadren compared to regular
hydrocortisone sometimes limits our
ability to prescribe it.
If one compares insulin deficiency
(diabetes) with cortisol deficiency
(Addison’s) it is notable how much
research, funding and technology is
devoted to new and better ways of
replacing insulin which has not, over the
past decades, been replicated in cortisol
replacement. Hopefully, we will see more
interest, investment and technological
assistance in this area in the future ■
Nigel’s story
Driving home from Porthmadog
after a wonderfully sunny
week with the family (it’s not
always raining in Wales!), I had to
keep blinking to see clearly – almost
as if my eyes were watering. Back
home, I noticed that I couldn’t see
my computer very well and thinking
perhaps I needed a new prescription,
I went to see my optician.
He was very concerned as he could find
nothing wrong with my eye. I only have
one functioning eye (my left eye wanders
off on its own, and has a detached retina
as well, so is totally useless), and some
months earlier I had had a little blurred
vision in my “good” eye, so had been
seeing a consultant. He’d done numerous
tests and also found nothing. On my
optician’s advice, I called him at once, told
him what had happened and he advised an
immediate MRI scan, revealing a macro
adenoma on my pituitary gland, about 4
cm in size and pressing on my optic nerve.
Pituitary Life | spring 2016

18 Patients’ stories
Strangely, I wasn’t very bothered. My
wife Jenny says it was as if I was closing
down, which was probably due to a
complete lack of some vital hormones.
Luckily for me, she is very determined,
and I saw the endocrine consultant
at our local hospital straight away. He
emailed the Queen Elizabeth Hospital
in Birmingham, our local centre of
excellence, and – nothing happened.
By this time my sight was deteriorating
rapidly, to the point that I could only read
with the aid of a magnifying glass, and
shopping expeditions became adventures
as I couldn’t see to the end of the aisle.
Driving was out of the question. My GP
got on my case and extracted the surgeon’s
mobile phone number from his secretary,
the endocrine consultant at our hospital
fired off more emails, my wife made a
nuisance of herself with the surgeon’s
secretary and one Friday morning, six
weeks after my diagnosis, we had a call
from a junior doctor. Could we report to
A & E by mid-day? We were in the car
within the hour, and on arrival had what is
probably the best ever experience of A &
E – we were treated like welcome guests
and the young doctor escorted us up to
the ward.
Tests and scans
The afternoon passed in a blur of tests and
scans. On Saturday morning I was woken
at 6.00am for a blood sample – apparently
they have to have two units of blood on
hand, which was not very encouraging!
I was first on the list and went down to
theatre mid-morning. I returned over eight
hours later to a frantic family who had
been expecting me back hours earlier - the
operation had taken four and a half hours
and I had been a long time in recovery. I
spent the night being violently sick – not
a good time to discover that Tramadol
and I don’t agree. On Sunday I was still
pretty groggy, but woke up, looked at the
famous Birmingham University clock
tower across the campus and told Jenny
it was a quarter past one, before going
back to sleep again. At least my eyesight
was working!
The rest of the week followed a pretty
normal post-operative procedure. Jenny
inveigled herself into my room every
morning, which no one seemed to mind,
and I was soon out of bed. My appetite
came slowly back (the hospital soup is
delicious) and by the end of the week I
was able to take a shower. On Friday I
had the wadding taken out of my nose,
which wasn’t so much painful as peculiar
- I hadn’t realised just how far back
my nose went. Saturday saw the usual
problem with hospital discharges – can’t
get doctors, can’t get prescriptions, but at
last I was in the car and going home. The
care in the QE had been first class, and
the multi-disciplinary team, neurosurgery,
endocrinology, ENT and ophthalmology
worked together seamlessly.
Back to work
The next few months were, thank
goodness, uneventful. My biggest fear
was that a sudden sneeze would undo the
surgery, but my surgeon had done a good
job, and ENT assured me it had healed
beautifully (handy tip from ENT – sneeze
with your mouth open as this lowers the
pressure in your nose). I was very tired to
start with and needed a long afternoon
nap, but by Christmas I was a lot better,
although I still tired easily. At the end of
January I went to work for a day (I’m an
accountant, so it wasn’t very strenuous)
and now I sometimes do two or three
days a week, which is plenty for someone
who is supposed to be retired. Physically,
I’m back to normal and have been digging
the garden, laying slabs, felting the shed
Pituitary Life | spring 2016

Patients’ stories
19
and being generally useful. I make a point
of taking regular walks, two or three miles
of brisk walking several times a week,
on the principle that, if bits of me aren’t
functioning at all, I should try to keep the
rest in tip top order.
About nine months later I had a call
from my surgeon’s secretary. Would I be
willing to do a photo shoot for the hospital
charity? My immediate reaction was “Why
me?” Perhaps George Clooney wasn’t
available? Anyway, off I went, and was
met at the hospital by the photographer,
the head of the charity and my surgeon.
We went to find his theatre team, and lots
of photos were taken, then it was back
to the foyer to be interviewed. What was
going on? It turns out that I was the first
patient to be operated on in the QE with
an amazing new endoscopic camera, the
Vertec Visionsense. This tiny endoscope
is ideal for brain and pituitary surgery and
has a revolutionary lens, modelled on the
eye of a bee, which can see in all directions.
The computer unscrambles the images
and shows them on a 3D High Definition
screen. The surgeon wears 3D glasses
and for the first time it’s possible to see
clearly and judge depth accurately, which
makes a massive difference to surgery. The
manufacturers had cunningly lent the kit
to the team to “have a go” and of course
they wanted one to keep. Well, three in
fact – a bit like shirts I imagine, one on,
and one in the wash and one in the airing
cupboard. At £80k a piece - the best part
of £250k, which the cash-strapped NHS
couldn’t afford, hence the involvement of
the charity.
For the next few days I had quite a bit
more than Andy Warhol’s fifteen minutes
of fame. I had two more photo shoots, a
full page in the local evening paper, a page
in the Birmingham Post, online features in
the Mail, the Mirror, the Star (‘Grandfather,
69, has brain tumour removed through his
nose’) and bizarrely, the New York Daily
Mail! The charity was delighted and I’m
pleased to say that they have raised all the
money to buy the three sets.
I had no idea at the time that I was
benefiting from this, and I suppose
there was no reason to tell me, as the
procedure in itself was perfectly standard.
However, the result is that my adenoma
was completely removed and I have not
needed any radiotherapy, for which I am
extremely thankful. I have had one annual
scan since and there was no sign of
regrowth. With hindsight, that anxious
six weeks wait for surgery has proved to
be well worth it.
Cocktail of drugs
I’m on a cocktail of drugs – hydrocortisone,
levothyroxine, testosterone and
desmopressin – but luckily there doesn’t
seem to be any side effects, perhaps because
they are only replacing the natural
levels of hormones that I would have
anyway. It took a few months to get the
levels and timings sorted, but now they
seem to be stable at levels that are well
within the normal range. The only difficult
one to manage is hydrocortisone - in
the event of a major trauma my inability
to cope with shock could be life-threatening.
However, on a daily basis there
are no problems. If anything stresses my
body, I have to up the dose – if I have a
heavy cold, the dose is doubled; a trip to
the dentist is OK unless I have a filling,
in which case I pop half a tablet before I
go in. In the event of major trauma, an
injection would be needed, and we have
an injection kit in the fridge (or a cool bag
if we are travelling in the wilder parts of
Wales or Scotland). It seems everyone’s
experience is different, and I’m obviously
not easily stressed – someone ran into the
back of our car shortly after my operation,
and while Jenny was busy searching
for my tablets, I had jumped out and was
taking photos!
The ongoing care from the QE has
been exemplary. Initially, we seemed to
be over in Birmingham all the time, as
ENT, ophthalmology, endocrinology and
neurosurgery kept a close check on me,
but now it’s down to annual MRI scans
and endocrinology appointments. There
is also an excellent nurse-led pituitary
clinic, which I can contact at any time -
this was especially useful in the early days
when we were trying to get my hormone
levels right.
Jenny and I went to The Pituitary
Foundation conference at Wembley in
2014, with some trepidation. Would
everybody have two heads? We needn’t
have worried. Everyone was perfectly
normal and it was so encouraging to meet
people who had been living with various
conditions for years with few side effects.
The speakers stressed the need for us
to become ‘expert patients’, and with
such rare conditions as these, it’s really
important to learn as much about them
as possible, as many medical professionals
will never have encountered them.
Speaking of which, I’ve been incredibly
lucky with my GP. I’m now the practice’s
only patient with pan-hypopituitarism;
sadly their only other patient died, although
at 93 it wasn’t exactly unexpected! My
doctor acknowledges that she can’t know
everything about everything (although
she does know a lot about most things)
and that sometimes I may have googled
something interesting. She asked me for
a copy of the notes from the conference,
and sends me copies of relevant articles
from the British Medical Journal (which
are about 30% understandable!). Jenny
and I feel really supported by her and
know that if we have any problems she
will do her utmost to sort them out. How
many GPs call you at 8.30 in the evening
to tell you that your blood tests are OK?
iPhone reminder
It’s now almost two years since my
operation. My iPhone is programmed
to remind me to take my tablets – if
the grandchildren hear the alarm go off
they say “tablets, Poppa” as if it’s the
most normal thing in the world. I wear
my Medical Alert bracelet all the time
and am learning to anticipate stressful
situations and up the hydrocortisone
accordingly. It’s quite strange having to
take responsibility for your body, having
left it to look after itself for so long. I’ve
been driving for some time, but please
don’t get me going about the DVLA
or I will need another tablet. My travel
insurers charge me a bit more, but don’t
seem too concerned, and I’ve noticed
that Jenny prefers holiday destinations
with a hospital. Otherwise, thanks to
some amazing doctors and surgeons, life
is wonderfully normal ■
Pituitary Life | spring 2016

20 Professional Patients’ stories articles
Ann’s story: A positive pituitary family!
I
was 30 and returning from working
as a nurse at Cairns Base Hospital
in north Queensland, embarking
on a four month overland trek back to
UK, through countries that would be
difficult to venture in current times.
My periods stopped and I leaked breast
milk! What was going on?? I put it down
to the disruption of travel and left things
until I restarted work at my training
hospital, Charing Cross in London. On
referral to a brilliant endocrinologist,
I was quickly diagnosed as having a
prolactinoma and put on bromocriptine
tablets, which quickly resolved the
problem.
Marriage
Five years later, I married Bob and went
on to have one child, who was born a
week before my 41st birthday - brilliant
pregnancy and delivery. The only problem
being that I was hopeless at breast feeding.
Only recently, I read in either Pituitary Life
or the London Support Group Newsletter
that breast feeding is difficult following a
prolactinoma...wish I’d known that 27
years ago!!
Ten years after marrying Bob, he
was diagnosed as having acromegaly, as
does his maternal aunt. The marvellous
endocrine team at Addenbrookes Hospital,
Cambridge quickly removed the tumour
which had caused it with no problems
since and he is monitored with medication
reviewed regularly. The annual brain
scans also revealed another benign brain
tumour which was removed some years
later, this time leaving a large scar, but Bob
quips...’’No worse than I’d get on a lively
night out in Liverpool!’’ (His home town!)
Our daughter manned The Pituitary
Foundation’s Helpline whilst she was a
medical student in London and is now
qualified as a junior doctor. Which was
her first ward? Well, endocrine, of course!
I hope this gives encouragement to
recently diagnosed pituitary patients - it’s
not all ‘doom ‘n gloom’!! ■
If you are a patient, family member
or friend and would like to share your
story in a future Pituitary Life please
get in touch with Pat:
pat@pituitary.org.uk
or 0117 370 1315
Pituitary Life | spring 2016

Raising awareness
21
The Pituitary Foundation had a very successful Christmas period and
many thanks for your support.
Mike and Ann Griffin
Christmas Raffle
The 2015 Christmas Raffle was a tremendous success,
which raised a fantastic £4,857.00. The lucky winners were:
■ 1st Prize - V Cavell (Ticket No 14689)
■ 2nd Prize - R Ward (Ticket No 05150)
■ 3rd Prize - G Leek (Ticket No 07186)
Mike and Anne Griffin, two long-standing volunteers, kindly came in to help prepare
the raffle (as they do every year) - this meant folding nearly 5,000 raffle stubs! When you
add the 6,000+ stubs they folded for us during the Summer Raffle, that’s an incredible
11,000 raffle stubs. Thank you so much to both of you ■
Events
Why not make 2016 the year that you take on a challenge of your
own? Last year saw supporters take on a range of challenges such
as skydives, long distance cycles, swims and long distance runs.
However, a challenge does not have to be about physical endurance. We also
saw people growing beards, having heads shaved, giving up alcohol and even
abstaining from talking for 24 hours! You could take on whatever challenge you
choose, whether physical or not, and we are sure that your friends and family
would simply love to sponsor you knowing that you are doing it for a cause so
close to your heart ■
Christmas
cards
2015 saw unprecedented demand
for our cards and you may well
have seen that, at one point, we
sold out of every single design.
If you intend ordering cards this year, we
really cannot emphasise the importance of
placing your orders early. We are delighted
to say that the sale of Christmas cards was
£4,085.00 - the most we’ve ever raised!
Thank you to everyone who ordered ■
Christmas
Appeal
Thanks to the generosity of
our members and supporters
who contributed; we are
delighted to say that our Christmas
Appeal 2015 raised an amazing
£3,301.38 ■
Pituitary Life life | spring 2016

22 Professional Raising awareness articles
Springtime Tea 2016
A
Springtime Tea is a fun and
easy way to support us. Simply
get together with friends and
family, buy or bake cakes, put the
kettle on and away you go!
It’s the perfect excuse to catch up with
old friends and tuck into delicious treats
while raising money for a great cause. And
it doesn’t matter if you raise £20 or £200
because every penny will help us continue
to support those affected by pituitary
conditions in their hour of need.
Last year dozens of people were baking
cakes, hosting teas at home, organising
cake breaks at work, holding garden
parties and even arranging spring fayres
for The Pituitary Foundation’s Springtime
Tea campaign.
This year we need even more people
to participate in Springtime Tea to help
us raise over £5,000! Whether you raise
£30, £100 or £1,000, you will be part of
a nationwide event that really does make a
difference to the lives of pituitary patients.
Springtime Tea isn’t only about a
traditional afternoon tea; it can include
many types of events. We want you to do
whatever suits you, whether it’s a garden
party, quiz night, barbeque with friends,
Pituitary Foundation Orbit
(London) Abseil - June 2016
Are you brave enough to take on this challenge? Situated in the Queen
Elizabeth Olympic Park in London and standing at 262 feet (80m), the
ArcelorMittal Orbit is the UK’s tallest sculpture and highest freefall
abseil!
This is an unmissable way to see the city skyline! Go over the edge, on an adrenalinefuelled
ride, down to the ground, taking in the breath-taking views 20 miles across
London including iconic buildings such as The Gherkin, St. Paul’s, Canary Wharf and
Wembley Stadium, as well as the world-famous sporting venue of Queen Elizabeth
Olympic Park.
Registration = £35
Suggested Minimum sponsorship = £350
To register your interest in this high octane challenge then please e-mail jay@
pituitary.org.uk
*As soon as we can book this event and we have a confirmed date we will notify you
in your monthly e-bulletin. Please keep an eye out for this* ■
an Easter egg hunt or a dinner party
and don’t forget that you can hold your
Springtime Tea at a date that is convenient
for you. There is no restriction in terms
of when you hold your event.
Blooming inspiring ideas
l Host a Springtime Come Dine @ Mine
- organise a brunch, lunch or dinner
during the spring for your friends
l Be green-fingered and host a plants
sale or an open garden afternoon
l What do you know? Test your
knowledge with our Spring Chicken
Quiz!
l Be bright and have a ‘Wear Yellow’
dress down day at
work or school
l Fancy a flutter? Then
try your luck with our
‘Pick a Flower’ sweepstake game
l Go traditional with an afternoon tea or
if you’re a coffee lover have your cups
at the ready for a coffee morning
l Love baking? Then why not make
some tasty treats for your friends or
colleagues at work
Get involved in Springtime
Tea 2016
We have plenty of materials available
that may help you organise your
Springtime Tea event, including
your own fundraising guide, posters,
invitations, quiz and our sweepstake
game. Contact jay@pituitary.org.uk ■
Pituitary Life | spring 2016

news Raising awareness
23
Pituitary Pen-Y-Fan Climb – 22 May 2016
Great North Run
We had a fantastic team of six runners at
the Great North Run 2015. The sun
was shining and our runners
enjoyed participating in what is the
world’s biggest Half Marathon, taking
in the spectacular sights of the Tyne
Bridges and joined by thousands of
other runners in pounding the streets
of Newcastle.
Between them our amazing team managed
to raise a sensational £8,152.26. Our sincere
thanks to Gez Thompson, Miguel Fernandez,
Rhonda Crosby, Paul Simmons, Neil Pendlington
and Stuart Bowes.
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 1314.
There is a £35 registration fee and we ask for a
minimum sponsorship of £350. Here’s what
Stuart Bowes had to say about his experience:
“I had been determined to raise some funds
for The Pituitary Foundation to put something
into pituitary causes after my son was diagnosed
with multiple pituitary hormone deficiency at 18
months. When my wife asked if I would join
her on the Great North Run in 2015, I decided
that this was the perfect opportunity. The day
was an amazing experience, even though I was
We are asking people to join us on our annual
Pen-Y-Fan climb. Last year this event raised a
fantastic £2,000, whilst the year before it helped
to generate £3,000. If you would like to join us in climbing
South Wales’ highest mountain then please get in touch.
E-mail jay@pituitary.org.uk
There is NO minimum sponsorship and this is a great day
out for all the family. Last year our youngest walker, Scarlett
Sheppard, was just 5 years old whilst our oldest walker, Caroline
Fiennes, was 76. You can see these two on our front cover with
huge smiles on their faces at the summit. Just look at the breathtaking
views that they are taking in and imagine yourself standing
there. We were also joined by former Trustee, Mike Griffin
We would like to thank everyone who joined us in 2015,
helping us to raise over £2,000. We had walkers of all ages and
abilities but each and every person reached the summit and every
single one of them enjoyed the experience as they took in the
spectacular scenery ■
nervous having been unable to train properly due to injury.
I had over £700 in sponsorship on the line, so there
was no way I was going to miss it, even if I had
to walk the 13 miles! In the end, I ran with
a friend who was recovering from illness and
we managed to run the first nine miles with
only a couple of short stops before we had
to begin walking.
The atmosphere at the GNR is something
else. It was a warm day, but the sight of
over 55,000 runners all raring to go is unlike
anything I had seen before, let alone been part
of. When the gun went, we began to shuffle and it
was a full 20 minutes before we crossed the start line! All
along the route there were people shouting your name (they read
it from your race number) and giving you encouragement and jelly
babies! A fellow competitor grabbed my arm as she passed me and
thanked me for running for The Pituitary Foundation because her
father had lived with a pituitary condition for many years. Little
things like that bring a tear to the eye. Once we had South Shields
in sight, we saw just what a massive operation the GNR really is –
there were sponsors’ tents and food outlets as far as the eye could
see and hundreds of people making their way to the distant finish
flag, all fighting their own battles to get to the end. My friend
and I decided that we simply had to cross the finish running, so
with 800m to go we started to jog again, which hurt! We did it
though and it was one of the best experiences of my life. In the
end I raised £900 for The Pituitary Foundation too, which made
the aching muscles worthwhile” ■
Stuart Bowes
Pituitary Life | spring 2016

24
Raising awareness
Spring Appeal - Patient &
Family Support Coordinator.
We are launching our Spring
Appeal to help us reach more
pituitary patients in their
hour of need. 2015 saw continued
high demand for our services and our
Patient Support Helpline answered
over 2,400 queries from pituitary
patients when they needed us most.
As more and more patients realise that
we exist, due to increasing awareness,
we expect the number of patients that
we support to continue to grow.
Last year 34% of patients contacting
the Helpline were newly diagnosed
patients or were diagnosed within the
previous 6 months. Can you remember
how you felt upon diagnosis? We know
that many of you wouldn’t have had the
access to services such as this upon your
diagnosis but now we are in a position
to support so many which is why your
support is vital. Imagine if more people
could get the support they need from
diagnosis? This could be a reality thanks
to our new position.
To help us keep up with this
overwhelming demand we recruited a new
Patient and Family Services Coordinator.
The person we appointed will be known
to many of you, long-standing volunteer,
Sammy Harbut, as she has been a Helpline
operative for seven years.
We have received part-funding for this
pivotal role but we now need to find the
remaining funding.
We are delighted to say that our very
generous Solent Support Group have kickstarted
our appeal by donating £300 and we
wanted to ask if you could spare a donation
to help us reach our target of £8,000.
PITUITARY FOUNDATION
S P R I N G
A P P E A L
How to donate
You can donate in a number of ways
to this appeal.
Post: Send a cheque made payable to
“The Pituitary Foundation” and post
it to Spring Appeal, The Pituitary
Foundation, 86 Colston Street, Bristol,
BS1 5BB
Online: Visit www.justgiving.com/
pituitaryfoundationappeal
Text: Send the message PFSA99 £10
to 70070
Your donation really will make a
difference to the lives of pituitary
patients when they need us most! ■
Chepstow Zip Slide Sunday 19 June
Registration:
Adults: £15 (Minimum sponsorship £50)
Children: £10 (Minimum sponsorship £30)
The Wire is one of the UK’s longest, tallest and fastest zip slides,
running the 700 metre (765yd) length of a spectacular quarry. Launch
yourself from the 70m (230ft) high cliff edge and speed along the
length of our 80m deep flooded quarry. Reaching speeds up to 40
miles per hour this exhilarating ride will take your breath away!
Restrictions: You must be aged over 12 years and taller than 1.3m to ride The Wire Zip Slide.
Pituitary Life | spring 2016

Raising awareness
25
Leaving a lasting legacy for
pituitary patients
We would like to acknowledge the following people
for the very generous donations that they left
to The Foundation in their Wills. The late Mr
Martyn Chatterley Coak bequeathed a substantial gift of
£10,000 in his Will and Mrs Olive Joan Clear also left a very
generous gift of £5,000.
These very generous donations bequeathed will make a
substantial difference to our work and will enable us to be there
for pituitary patients in their hour of need.
Would you consider leaving a gift in your
Will?
Due to the success of our Free Will offer we have
extended the number available to you, our valued
members. These Wills are worth £100!
As you will see from Esther White’s testimonial (page 6-7
in this edition), working with Compass Will writers to draft
your Will could not be easier ■
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 | spring 2016

26 Professional Wall thanks articles
Thank you to our friends at
Enterprise Rent-A-Car in
Cardiff who presented us with
a cheque for £1,000. This was a
donation made thanks to the finance
team requesting support from the
Enterprise Foundation in support
of their skydive participation.
In memory of Stephen Clohessy
– Kathryn Clohessy chose to mark the
10th Anniversary of husband Stephen’s
death by skydiving in his memory.
Kathryn raised £166 in the process.
Beaujolais Nouveau – Our sincere
thanks to Introbiz Business Networking
in Cardiff who organised a dinner to
celebrate Beaujolais Nouveau. Introbiz
once again chose us as the beneficiary and
raised over £3,000 in the process.
Golden Wedding - Our sincere
thanks to Yvonne and Allen
Hughes who asked for donations
in lieu of presents for their
Golden Wedding Anniversary. The
generous couple raised £220. Many
congratulations Yvonne and Allen,
from all of us here at The Pituitary
Foundation.
Investor AllStars – Our thanks
to our friends at GP Bullhound who
organised the ‘Investor AllStars’ event in
London. GP Bullhound asked guests to
make donations on the night and raised
£2,589. A special thank you to Manish
Madhvani, Managing Partner, who kindly
nominated us as the chosen charity.
Tour de Wales - Thanks to staff
from the Department of Work and
Pensions who very kindly took part
in a ‘Tour de Wales’ cycle on a spin
bike at a business exhibition. The
fundraising team were on hand
with their collection buckets as the
volunteers took turns at pedalling and
£300 was raised.
Illuminator Half Marathon &
Night Trail Race - Avid fundraiser Ian
Brown braved the sub-zero temperatures in
the pitch black darkness to complete this
race and raised £110.
Pituitary Life | spring 2016

news 27
Vibe Spin-a-Thon - There was a
successful Vibe Cycle Spin-A-Thon that
took place in Bridgend where £606 was
raised. Our thanks to Suzy Florian for
organising this event and to everyone
who took part.
Alcatraz Sharkfest -
Congratulations to Vicky Muir &
Christine Brookes who completed
their ‘Alcatraz Sharkfest’ swim.
Every swimmer dreams of making
the ultimate ‘ESCAPE’ from the
historical island prison located in
the middle of the San Francisco
Bay! This is the swim the Anglin
Brothers and Frank Lee Morris
successfully attempted in their
escape from Alcatraz on the night
of June 12, 1962 and Vicky and
Christine have also completed this
swim!! They raised £766 in the
process.
Great
South Run –
Congratulations to
William Bates who
ran the Great South
Run and raised £190.
Thanks to staff at Innovate UK who
held a ‘Go Red’ cake sale to raise funds
during Pituitary Awareness Month raising
£153.
Pedal, Paddle, Puff – In
the last issue we mentioned Patch
Russell and Geordie Tulloch who
had raised £30,000 at the time
through their epic challenge. They
cycled Edinburgh to Dover, kayaked
the channel and ran Calais to Paris.
In the end their total fundraising
stood at an astounding £60,000
which was split between us and two
other charities. Something that they
can both be incredibly proud of.
Great Scottish Run – Laurence Hearton
ran the Great Scottish Run and raised £265 in
the process. Colin Perry also took on the same
challenge raising £225.
Bristol Half Marathon
– Ingrid Foster ran the Bristol
Half Marathon in support of
her nephew, Lance Holcombe,
raising £503.75 in the process.
Emma Sicolo also ran this race
and managed to raise £1,000. Well
done to the both of you ladies
10K Run - Thanks to Jo Greasby,
Stephanie & Andy Mindham who ran
the Bradford City 10k, raising £556
towards our funds! ■
Pituitary Life | spring 2016

Pit_29.09.15
Do you keep your pituitary papers stored in one place, or have
you got appointment letters, test results and our Emergency
Cards in various envelopes, or wedged behind the toaster?
Hydrocortisone Emergency Factsheet
for Ambulance Personnel
Hydrocortisone emergency in pituitary patients: adrenal/addisonian crisis.
This is potentially life threatening and may be fatal if untreated.
One difficulty for ambulance staff is that the instance of call-out to patients with
addisonian crisis will be a rare event but rapid response to save lives is vital and
therefore it must be recognised immediately. Any patient with a known pituitary
condition or steroid dependence should be considered at high risk, as would
those suffering trauma.
Secondary adrenal insufficiency
Hydrocortisone is a steroid hormone produced by the adrenal gland. It plays a complex
role in regulating body functions and is essential for survival.
Hydrocortisone is taken as a replacement for the natural hormone where this is deficient,
either because of:
a) pituitary gland deficiency of ACTH (the hormone that stimulates the production of
hydrocortisone by the adrenal gland); this is referred to as secondary adrenal
insufficiency OR
b) failure of hydrocortisone production by the adrenal gland itself (Addison’s Disease)
which is referred to as primary adrenal insufficiency.
A good majority of people with pituitary gland conditions have to take replacement
hydrocortisone daily (so they are steroid dependent patients) as they don’t produce this
naturally i.e. they have secondary adrenal insufficiency. If any person became ill, or were
to suffer severe shock, the body would naturally increase the output of cortisol from the
adrenals. However, people who need to take replacement hydrocortisone have to
increase their ‘chemical’ dose to help mimic the cortisol surge they don’t naturally have.
If the patient has a mild illness such as a basic cold or flu, they would increase their
hydrocortisone tablet dose and recover normally. But if the patient is vomiting, has a
serious illness, is involved in an accident and suffers severe shock they would, and quite
quickly, experience what pituitary patients and their families may term a ‘cortisol
crisis, or, as more commonly known in medical circles as an ‘adrenal’ or ‘Addisonian
crisis’.
JRCALC Guidelines
› information & help
An adrenal
crisis is life
threatening!
All ambulance services are issued with the national guidelines from JRCALC and
‘Hydrocortisone for adrenal crises’ is included within these guidelines.
The JRCALC drug protocol for hydrocortisone allows Paramedics to administer
hydrocortisone to patients when needed. When an Addisonian Crisis is suspected, adult
patients should be given a 100 mg injection of hydrocortisone, either through IM or IV
injection in line with JRCALC guidelines. (Please remember that pituitary patients
may say that they are a ‘pituitary patient’ and they are having a ‘cortisol or
hydrocortisone crisis’, and not use the terminology ‘addisonian crisis’.)
The Pituitary Foundation, 86 Colston Street, Bristol, BS1 5BB
Registered charity no 1058968
■ Patient information & support Helpline
0117 370 1320 Monday to Friday 10.00am to 4.00pm
■ Endocrine Nurse Helpline
0117 370 1317 scheduled hours (please check website)
■ Comprehensive website www.pituitary.org.uk
■ Telephone buddies network
■ Over 30 local support groups across the UK & Republic of Ireland
■ Pituitary Conferences
■ A range of informative patient booklets
■ A Voice for the pituitary patient
1
A pituitary patient
on hydrocortisone,
who is in shock,
been in an accident
or is vomiting,
URGENTLY needs
a higher dose of
hydrocortisone
(usually by 100mg
injection)
l Think - Adrenal
The Pituitary Foundation is an organisation dedicated to providing
information & support to newly diagnosed patients & patients living
with pituitary disorders
Insufficiency
The Pituitary Foundation
provides:
l Realise
- Adrenal Crisis!
l Act NOW to treat
this patient and
save their life!
www.pituitary.org.uk
Hydrocortisone A5_2 sided.indd 1 26/08/14 10:02 AM
We have a solution –
our Pituitary Patient
Folder, with our printed
card on the front. The folder has
20 clear plastic inserts to easily file
all of your pituitary paperwork. It is
a convenient size to store at home
and carry with you to endocrine
appointments; it will help you quickly
find any information you might need
during your appointments.
The Pituitary Foundation’s services are free of charge but subscribed membership
is available for those who wish to make the pituitary journey better for current and
future patients. Subscribed membership entitles you to our magazine, Pituitary Life,
which is published three times a year, discounted fees to The Pituitary Foundation
Conferences and other membership benefits.
I have Diabetes Insipidus or
Vasopressin Insufficiency
Working to support pituitary patients, their carers & families
Follow us on Twitter @Pituitary_org and Facebook www.facebook.com/pituitaryfoundation
The Pituitary Foundation 86 Colston Street, Bristol BS1 5BB
Admin Line: 0117 370 1333
e-mail: helpline@pituitary.org.uk
Symptoms: excessive thirst & urine output.
I don’t secrete a hormone called ADH (Antidiuretic hormone)
from my pituitary gland.
Treatment:
Desmopressin (DDAVP)
My usual dose is:
This condition should not be
confused with Diabetes Mellitus
Company Limited by Guarantee, Reg’d in England & Wales No.3253584 Reg’d Charity No.1058968
Your local pituitary support group:
Colours available - purple, orange and
green (please mark your order with your first
and second colour preference).
A5 Endo referral pad_update 2-15.indd 1 29/09/15 8:52 AM
Pit Found_DI card.indd 1 12/09/14 1:25 PM
It will also be invaluable if an emergency arises– just pick
up and take with you to inform those looking after you.
We are able to offer these folders at a reduced price of
£2.00 each including packing and postage. To order your
folder, please send a cheque, payable to The Pituitary
Foundation, 86 Colston Street, Bristol BS1 5BB, marking
your envelope ‘Patient Folder’ or go to our website shop
www.pituitary.org.uk/catalog/general/c-23/c-80
Find us on
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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.
© 2016 The Pituitary Foundation
• Registered company number 3253584
• Registered charity number 1058968
The Pituitary Foundation
86-88 Colston Street, Bristol, BS1 5BB
helpline@pituitary.org.uk www.pituitary.org.uk
Editor of Pituitary Life: Pat McBride
Working to support pituitary patients
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