Issue 34

Autumn 2016 edition 

Issue No: 34 

Awareness month 

October 

Adrenal crisis: the 

patient’s perspective 

Announcing 

your free e-copy 

of our new Fatigue 

Management booklet 

Three patients 

tell their stories 

Too hot, too 

cold? Body 

temperature 

Three views 

– a patient, 

a psychologist and 

an endocrinologist 

New! Christmas 

merchandise 

Last call for 

The Foundation 

Inaugural Ball! 

Pituitary life | autumn 2012 

www.pituitary.org.uk

2 

news News 

Contents 

Your extra benefit 

of membership 

News 2-6 

Local support group news 7 

Professional articles 8-15 

Patients’ stories 16-20 

Raising awareness 22-27 

Wall of thanks 24 

Thank you 

for your 

completed 

surveys 

We are overwhelmed by 

the huge response to 

our Member Survey 

which was enclosed in the 

summer edition of Pituitary Life. 

The results will be published in 

our spring 2017 edition. Thank 

you very much for taking part ■ 

We have just launched our new 

Fatigue Management booklet, 

and as an extra benefit of your 

membership, we would be delighted to 

email you a copy of this. Our members are 

very important to us and to thank you, we 

would like to offer this booklet for free, before 

it becomes more widely available. 

By providing us with your email address to send 

you this, you will also receive our e-bulletin which 

is packed full with exciting updates and news! If 

however, you already receive our e-bulletin a copy of 

our new Fatigue Management booklet will be emailed to 

you directly. Thank you all very much for your ongoing 

support. 

Please email us fundraising@pituitary.org.uk for 

your booklet and for those members too who are already 

receiving their e-bulletins, we can make sure your record is 

up to date ■ 

Fraser Cardow, 

Marketing and PR manager 

Fraser joined The Pituitary Foundation in 

July 2016, to promote the growing work of 

the charity. Born in Scotland, Fraser has 

a background in marketing, management and 

journalism and brings a varied skill-set to his 

role. 

Recent roles include a four-year spell in Glasgow 

with STV as an online producer, and an adventurous 

two-years in Fiji managing a hotel resort. He recently 

moved to Bristol from the Scottish Highlands 

where he was working as a project manager 

for another growing charity. In his spare 

time he enjoys adventuring with his 

young son, playing tennis 

and exploring the great 

outdoors ■ 

Pituitary Life | autumn 2016

news News 

3 

Awareness 

month 

October 

2016 

Awareness month 2016 

Did you know that pituitary tumours can often be diagnosed through a routine eye test? 

The theme for October Awareness Month 2016 is improving optician awareness about pituitary tumours. We 

hear of many pituitary tumours being diagnosed through routine eye tests, and making more opticians aware 

of tumours will help prompt earlier diagnosis for pituitary patients ■ 

How to get involved 

Please have a look and see which of the five activities below you can help 

with. Some are geared around increasing optician awareness, and some are 

general pituitary awareness/early diagnosis. Getting involved can make 

a massive difference to how widely our Awareness Month message spreads 

across the UK. During October, we ask everyone to work together to increase 

awareness about pituitary conditions. If you would like to plan an activity that 

is not listed, just let us know as we can still support you in planning this. The 

more activity during October the better! ■ 

1. Pop into your optician with 

our poster 

Email campaigns@pituitary. 

org.uk or call us on 0117 370 

1310 to request your poster 

and tell us your address. Then 

pop in to your local opticians and 

ask for the poster to be given to 

your optician, or better still ask if 

they can display this on their staff 

notice board. 

If your optician has more than 

one branch in your local area, and 

you are able to take posters to them 

all, we will happily send you extra 

posters. On the back of the poster 

is information about pituitary 

tumours and case studies from 

patients diagnosed by an optician. 

Your involvement could mean that 

others do not have to go through the 

frustratingly long diagnosis that 

many patients experience ■ 

60 

DID 

45 

YOU 

30 

KNOW 

26 

VISUAL 

FIELD TESTS 

CAN 

21 

16 

DETECT 

12 

PITUITARY TUMOURS? 

2. Get baking 

Inspired by pituitary patient Sue 

Perkins, for this Awareness month, 

we are encouraging you to arrange 

your own ‘Great Pituitary Bake-off’ to 

raise funds and awareness. It could 

be as simple as organising a cake sale 

and dress-down day in work where 

people pay to take part, or you could 

ask friends and family round for cakes 

at yours. Pop the kettle on, get baking 

and raise vital funds for pituitary 

patients. 

To request your ‘Great Pituitary 

Bake-off’ fundraising kit just contact us, 

or complete the Awareness Month insert. 

The kit will include various resources, 

including recipes and leaflets about 

pituitary conditions that you can give out 

to participants to raise awareness. 

Alternatively, if baking is not your thing 

and you’d prefer something more active 

then why not organise an ‘Awareness 

Walk’ in your area. You could always have 

a few cakes at the finish as a treat for their 

efforts ■ 

Pituitary eye test A5_v2.indd 1 19/08/2016 08:48 


4 News 

5. Donate 

3. Set up a stand 

Do you have time to set up a pituitary awareness 

stand for a few hours in your local community, for 

example in a doctor’s surgery or library? If so we can 

provide all the posters, leaflets and balloons you will need 

about general awareness of pituitary. (Remember to get 

permission from the venue you are going to use and speak 

to us for help in planning your stand) ■ 

4. Talk 

Give a general pituitary awareness 

talk in your local area! This could 

be anywhere from a local school, 

place of work, WI, or rotary club. The 

Foundation has developed materials to 

help support people giving a talk on pituitary 

conditions, and covers early diagnosis and 

diagnoses of tumours by opticians. These 

materials include PowerPoint slides and notes to read 

from to make it easier. Let us know if you’re interested ■ 

If you are unable to get involved with the Awareness 

Month activities but are willing to donate to help fund 

our awareness work instead, please fill in the ‘Make a gift’ 

section of the Awareness Month insert within this edition 

of Pituitary Life. Last year, thanks to your generosity, we 

managed to raise enough to cover the project planning as 

well as the printing of the awareness resources we sent out. 

Please can you help us again? ■ 

REQUEST YOUR RESOURCES 

Let us know which activity you would like to get 

involved in and we will send you the resources you 

will need. To do this just fill in the Awareness 

Month insert inside this magazine and post 

it to us. Or contact us at: campaigns@ 

pituitary.org.uk or on 0117 370 1310. Please 

make sure you let us know about your 

awareness activities as this allows us to 

measure how much of an impact Awareness 

Month has around 

the UK! ■ 

The Masquerade Ball final call 

Summer has gone and your sandals are now about to be put back in the 

wardrobe… until next year at least. As you put your sandals away, how about 

searching for your most glamourous shoes, because yes, Cinderella you shall go to 

the Ball! Or maybe this can be the perfect excuse to go shopping for new shoes and a dress. 

The Pituitary Foundation cordially invite you to their inaugural Masquerade Ball. Come and join us for a very special evening 

of exquisite food, fine wines, champagne and fantastic entertainment in a luxurious hotel in the heart of exclusive Mayfair, London. 

This promises to be a magical and unforgettable evening and one that your company will not want to miss. 

Our host for the evening will be BBC presenter, John Inverdale, who has presented the Olympics, Wimbledon and the Rugby 

World Cup. Our Heads & Tails Fundraising game will be hosted by Sky Sports Grand Prix presenter, Natalie Pinkham. We will have 

fabulous entertainment as well as a number of celebrities in attendance, as guests for a magical and unforgettable night. 

Join us to help raise vital funds to support pituitary patients, whilst helping to increase awareness of pituitary conditions too. 

As a valued member, we would hate you to miss out on joining us for this joyous celebration. 

Tickets cost £130 each or £1,300 per table of 10. 

How to book your tickets Please either call 0117 370 1311 or e-mail jay@pituitary.org.uk ■ 

Pituitary life | autumn 2016

News 

5 

Medication costs – how much? Steve Harris 

I’m a long-term pituitary patient, I 

had surgery way back in 1988. I’m 

often asked to talk to healthcare 

professionals and pharmaceutical 

companies about my life as a pituitary 

patient. 

During a recent talk to a pharmaceutical 

company which focussed on the adrenal 

insufficiency aspect of my condition, I 

told the audience that I had calculated 

just before the talk that I have taken over 

20,000 hydrocortisone tablets since my 

surgery. 

This started me thinking about all of 

my pituitary medication and how much I 

have cost the NHS, so I decided to work 

out the cost. The table below shows the 

annual cost – it’s impossible to work out 

the total cost since surgery because I can’t 

remember when I started taking some 

of the medication and the doses (and 

possibly some prices may) have changed 

over the years. 

So, as you can see, I currently cost the 

NHS £4,245.94 a year, which is £81.65 

per week (I hope the NHS never sends 

me the bill) ■ 

Medication Dose Pack size Pack cost Yearly cost Calculation 

Hydrocortisone 

tablets 

Levothyroxine 

10mg 30 78.50 1962.50 

100mcg 28 2.02 26.26 

2 tablets/day = 730 p.a. = 730/30 = 25 packs = 

£78.50 x 25 = £1962.50 

1 tablet/day = 365 p.a. 365/28 = 13 packs £2.02 

x 13 

Nebido injection 1000mg/4ml 1 80.00 320.00 

one injection every 12 weeks 52/12 = 4 p.a. one 

injection = £80 

Genotropin 

Miniquick 

Cabergoline 

Solu-Cortef 

injection 

200mcg 7 243.00 1822.50 

500mcg 8 34.93 113.52 

100mg 1 1.16 1.16 1 p.a. 

TOTAL= £4,245.94 

7 syringes/pack 1 syringe/week = 52 syringes = 

52/7 = 7.5 packs £243 x 7.5 = £1822.50 

0.5 tablet weekly = 26 p.a. 26/8 = 3.25 packs 

£34.93 x 3.25 = £113.52 

Your pituitary journey using art Pat McBride 

In the last edition of Pituitary Life, 

my abstract painting of DI appeared 

on the front cover. 

This painting represented for me a lot of 

the confusion (at that time) and objects 

that were to become part of my life, 

because of this condition. Making this 

picture, helped me to put my story down 

onto paper without having to write or 

paint the reality of it. 

Abstract art, is art that does not attempt 

to represent an accurate depiction of a visual 

reality but instead uses shapes, colours, forms and 

gestural marks to achieve its effect (Tate). 

Several years ago, I painted my pituitary 

journey - from starting to feel unwell, to 

the present day. It did reveal how awful 

I felt then, the difficult and lengthy 

diagnosis. I wanted these emotions to be 

told but I also wanted to disguise these as 

they still hurt. As I unintentionally split 

the canvas with shapes, paint and lines 

into two, this gave me chance to put down 

the past on one side and produce more 

recent images, which were much more 

positive and gave a completeness to my 

journey. 

Where can you begin painting your 

journey? 

Here are some ideas to help you: 

l Start by copying from an object or 

a photograph and gradually make 

abstracted shapes from the image. 

l If you are painting an object, for 

example, try squinting your eyes until 

all you can see are the blurry outlines 

of your subject. Forget about details. 

Take your pencil and sketch in the 

broad shapes and outlines. Or, draw 

a small section of your subject and 


6 News 

enlarge this to cover the whole paper. 

l Stand back and see how the drawing 

unfolds, how the shapes take form 

and become interesting, without an 

exact copy your subject. Keep playing 

with the image, adding and subtracting 

shapes, lines and colours. Work fast, 

and then stop and look at what you 

have. 

l Use household objects as your tools 

to paint – make different, interesting 

marks with toothbrushes, sponges, 

kitchen roll, cling film, pegs etc. 

l Listening to music can help enhance 

your emotions when you make art. 

Music can also influence the quality 

and speed with which you apply a pen 

or paintbrush to the canvas. Let the 

music make your marks. 

l Emotion can drive the art process. 

Abstract art is the best way to directly 

express emotion because it isn’t about 

being ‘true’ to a particular subject 

matter. You can paint to express 

feelings – both positive and negative. 

Would you like to paint your journey 

and write a few words to send a copy to 

us? We’d like to produce on our website, 

a patients’ gallery of their journey in 

art. Please email a clear photo/scan of 

your work to pat@pituitary.org.uk and 

include a few paragraphs about your 

pituitary journey ■ 

In memory 

In loving memory of Lance, a tribute 

from his family 

Our beautiful son, pituitary 

patient Lance Holcombe, 

passed away on 19 June this 

year, after a 22 year fight with a brain 

tumour, and for the last four months 

of his life struggled in hospital - four 

weeks of those in intensive care. 

He was only 27 years old, a wonderful 

man in all ways and so loved by everyone, 

and so, so strong right until the very end. 

You will always be in our hearts and 

thoughts Lance, you and will be missed 

so, so much. 

We hope you are now in a better world 

- so happy and flying free, like the super 

hero you are, around a magical dreamland! 

Which is what you totally deserve. 

Love you more than all the stars in the 

universe! 

Mum, Dad, Brean and Jas xxx 

The staff and volunteers at The Pituitary 

Foundation were shocked and very sad to 

hear about Lance. Our deepest sympathy 

and heartfelt condolences go to his family. 

Joyce Lowden 

We were very saddened to 

hear that Joyce passed away 

on 16 June 216. Joyce was a 

long-standing and committed Area 

Co-ordinator for the Tayside Local 

Support Group which launched in 1999, 

with meetings in Ninewells Hospital, 

Dundee. Later on, the Group became 

Tayside and Scottish Highlands, with 

a wider coverage and regular informal 

meetings, again dedicatedly run by 

Joyce. As a patient, Joyce offered great 

support to others in her region and 

attended Foundation training events 

over the years. Our sincere sympathy 

and condolences go to her loving 

granddaughter Emma and her family. 

Marilyn Norman 

A 

pituitary patient and member, 

Marilyn, passed away in May, 

following a holiday with her 

husband in Sri Lanka. Readers may 

remember seeing Marilyn’s story 

in the summer 2015 edition of the 

magazine. Marilyn was a member of 

our online Cushing’s Support Group. 

Her sudden death came as a great 

shock to her husband and family and 

we offer our sincere sympathy and 

condolences to them. 

May all of these bereaved families 

find peace in the memories of their 

loved ones they cherish ■ 


Local Support Group News 

7 

This section contains some 

brief updates from a few of 

our support groups around 

the UK. For information about 

our Groups’ meetings and 

to see if one of our Support 

Groups meet near you, 

please see our website, or 

contact Rosa Watkin on 0117 

370 1316 or email helpline@ 

pituitary.org.uk 

Cardiff 

The Cardiff Group have had a busy 

year so far. At their April meeting, 

Janet Lewis, Endocrine Nurse at the 

University Hospital of Wales, spoke 

about emergency hydrocortisone. In 

June, they enjoyed a garden party social, 

and in September, Sue Ward, Head 

of Nursing, spoke to the group. We 

would like to say a huge thank you to 

the Support Group for their generous 

donation of £1,000. A special thank 

you to two of their members, Maurice 

Thomas and Sarah Jones, who helped 

to raise most of this money. Sarah took 

part in a sponsored run, and Maurice 

asked for donations instead of presents 

at his birthday celebration. Thank you 

very much indeed! Here is Maurice 

presenting the cheque to committee 

members, Jane Thomas and Jane 

Withey (above). 

Aberdeen 

This year the group welcomed new 

volunteer area coordinator, Rita 

Stephen, who has acromegaly. Rita 

ran her first meeting in March, which 

the group really enjoyed. It was a full 

house and Dr Prakash Abraham gave a 

talk and answered their questions. The 

June and September meetings both had 

interesting speakers too. A particularly 

warm welcome awaits new patients. Go 

along and have a chat over a coffee/tea 

with other pituitary patients and their 

families and swap experiences. If you’d 

like to be put in contact with Rita and 

the Aberdeen Group, please email Rita 

at ritamstephen@gmail.com or call 

0117 370 1316. 

Birmingham 

The Birmingham Group have enjoyed 

two meetings this year, run by new 

coordinators, Nigel and David. In 

February Andrea Mason, QEHB 

endocrine nurse, talked about her 

role, and at the May meeting Lisa 

Shepherd covered the sick day 

rules, demonstrated the emergency 

hydrocortisone injection, as well as 

answering a host of general questions. 

The next meetings are on 1 October 

and 3 December. The meetings are 

held on Saturday mornings at the 

(old) Queen Elizabeth Hospital site 

in Edgbaston. New faces are very 

welcome, just call 0117 370 1316 or 

email: David at lynamdavid@yahoo. 

co.uk or Nigel at nigel.tinsley@ 

virgin.net for more information. 

Bristol 

The group have enjoyed some excellent 

medical speakers so far this year; Dr 

Richard James, Radiology Registrar, 

with a particular interest in neurological 

radiology, from the North Bristol 

NHS Trust. Also, Dr Karin Bradley, 

Consultant Endocrinologist at BRI, 

and Dr Alison Evans, Consultant 

in Diabetes & Endocrinology from 

Gloucester Royal Hospital. A huge 

thank you to the group for their 

generous donation of £200. 

Liverpool 

The Liverpool Support Group celebrated 

their 20th birthday at their meeting on 

25 June. This is an absolutely amazing 

achievement. The Foundation wishes 

the group a very happy birthday, and 

a huge thank you to everyone on the 

committee for their ongoing hard work 

in keeping this vital support network 

going. They welcomed 80 guests to the 

celebrations, including past and present 

group members, and their families and 

their friends. Miss Gilkes, Neurosurgeon 

at the Walton Centre, and also other 

members of the endocrine team 

including Chris Morgan, Emma Wilby 

and Chloe attended. There was a buffet, 

DJ, games, and a beautiful 20th birthday 

cake. Pictured above are the group’s founder 

members cutting the cake and a group birthday 

photo ■ 


8 

Professional articles 

A triple article looking from the viewpoints of a patient, a psychologist and an endocrinologist. 

The patient explains his experiences 

I 

am 56, and a couple of significant 

things have happened to me. These 

changes came about purely through 

my persistence in seeing my GP and 

contacting the hospital, again and 

again. 

I have been on growth hormone for 

a number of years and as far as I was 

concerned there were no problems. I 

was asked by the specialist if I was OK 

and I responded with a “Yes”. However, 

what I was not told was that my growth 

hormone levels were very high. They had 

been for a few years. 

Another range of blood tests 

I was often at the GP surgery and the 

doctor did another range of blood tests, 

to try and find out why I was having 

terrible joint pains in my legs, hips, knees, 

wrists and hands. I was also very tired all 

the time and looked exhausted. All other 

tests had come back as normal. I had 

spoken to the hospital more than once. 

My GP was of the belief I may have had 

myasthenia gravis. 

When the blood tests came back, 

my GP showed me the results on the 

computer screen. All the tests were 

normal except one, the growth hormone 

(IGF-1) test was extremely high. 

I spoke to the hospital and after a 

long discussion I was told the assay (the 

descriptors that give the range in which 

the growth hormone is assessed) were not 

very accurate. That although the results 

looked high, they were not high. This 

confused me. How can a blood test be 

assessed properly if the assay is no good? 

It is as if, you have a headache and take 

500mg of paracetamol to ease it, but your 

body only uses 10mg of the paracetamol 

to cure the headache. 

So my growth hormone dose was 

reduced by half. Within a few days the 

change was significant. Almost all the pain 

had gone in my joints. I felt better and 

able to do more. I did ask the specialist 

what long-term damage may have been 

done as a result of a few years of being 

overdosed on growth hormone. No-one 

could tell me, as there was no research on 

this issue. 

Tired very quickly 

Then I noticed that I was becoming very 

tired, very quickly. I put it down to the 

condition. But it got worse. Then a month 

or so ago, my Testocaps (testosterone 

replacement capsules) had been stopped 

being manufactured and the supplies 

from MSD had dried up. So I had to look 

for an alternative, quickly. 

In the next paragraphs, I am going to 

talk about the effects on testosterone on 

men. I will be as appropriate as possible! 

Three years ago, when MSD stopped 

supplying Testocaps, I had to change over 

to testosterone gel. The gel burnt my skin 

and caused me much embarrassment. 

I had gone onto the recommended 

dose, but this was not monitored closely 

enough. On one occasion, whilst on the 

local bus going to do my voluntary job, 

that thing that only happens to men, 

happened. It was very hard and very 

painful. To the extent, that I had to remain 

on the bus and go home. Fortunately, I 

had a shopping bag with me and was able 

to hide my embarrassment with the bag. I 

got off the bus and walked as quickly as 

I could to my front door. The hardness 

remained for seven hours. I was in agony. 

Many may find this amusing, but it wasn’t. 

It was agonising, painful and scary. 

I rang the endocrinology department 

at my hospital and when I explained the 

problem to the endo team, it became a 

source of amusement. I was upset by their 

reaction to my predicament. 

However, I ended up back on the 

Testocaps as they had become available 

again. In May of this year, as luck would 

have it, I had a full range of fasting blood 

tests done, for a new specialist, including 

my testosterone levels. These levels had 

not been checked for over five years. Why? 

I do not know, except to say, my previous 

consultant said it was a very complicated 

test. 

I went for the results. Apparently, 

the assay for testosterone starts at one. 

Normal levels are between nine and 14. 

Mine were at one. 

Basically, I was showing no testosterone 

in my body, even though I had been taking 

the Testocaps. So they were obviously not 

working at all. 

So, I am now using the Tostran pump 

and putting the gel on my skin, but at a 

lower than normal dose, so I can monitor 

the effects closely. 

Pituitary gland removed 

I was fourteen when I had my pituitary 

gland removed. I did not go through 

puberty properly. Sex was and is something 

alien to me and somewhat frightening. 

Added to this, I am a Catholic. This only 

added to my problems. But I also know, 

testosterone is not just about sex and 

erections. For example, I was rushed to 

the A&E department of my local hospital 

in the early hours of the morning, with a 

heart rate of 38 beats per minute. It was 

frightening. A host of tests were done 

but everything came back as normal, but 

no test for testosterone levels was done. 

A few hours later, I left and came home. 

For many nights after, I was quite scared 

when I went to bed, wondering if I would 

actually wake up the next day. 

Testosterone not all about sex 

Testosterone is also about energy levels. 

It can effect heart rates. It also helps with 

the body’s care and repair system. As well 

as many other functions. Why do people 

always think male testosterone is all 

about sex? After all, women do not think 

oestrogen is all about sex, do they? 

Over the forty-two years since my 

devastating operation, the radiotherapy 

that has caused irreparable damage, the 



9 

medication problems and the myriad 

of psychological issues that come with 

the condition, no-one, at any time, has 

ever offered any counselling or a talking 

therapy to help me come to terms with all 

these issues, particularly the sexual part of 

my identity. 

Finally, I would like to say pituitary 

conditions are complicated. They 

are irritating and can annoy us, every 

day. However, you are the one who is 

responsible for getting to grips with your 

condition. You need to know about your 

medication, whatever it is. Know enough 

about it to realise when something is 

wrong. Be persistent when you contact 

any health care professional. Make sure 

that you are actively listened to, you 

deserve that at the very least. 

Personally, I would like every member 

of the endocrinology team at my hospital 

- nurses, doctors, and consultants, to 

experience for one day, what it feels 

like to have the conditions we have. To 

experience insulin stress testing, lumbar 

punctures, brain scans, and other semibarbaric 

tests, that we experience on 

a regular basis…..then, and only then, 

would they have an inkling as to what we 

have to cope with. 

When you next see your consultant ask 

yourself “Are they actually listening to me? Are 

they aware that I am even in the room?” 

If you don’t feel they are, it is up to you 

to make them aware that you are there! 

That you want to be listened to. 

I wrote this too, because I feel it is 

valuable to realise that if you do have 

problems, you need to talk about these – 

with your partner or loved ones, so that 

they can try to be understood. Despite 

the journey I’ve had, there has been some 

good, simply in talking about it. 

Thanks for reading my story. If it were 

not for friends and family, I am sure I 

would not be here. Ringing Pat at Pit-Pat 

has been a tremendous help too. 

Footnote: There is a new assay in 

place now for growth hormone blood 

tests (ref page 1 of my story) ■ 

Psychologist’s view: Healthcare frustrations 

By Dr Sue Jackson 

Peter’s story is, sadly, not 

uncommon. While there are lots 

of examples of good monitoring 

and healthcare provision, there are 

also lots like this one, where things go 

wrong. 

I’m all for patients having access to 

their test results, but if the patient isn’t 

told about the limits of the tests that are 

being used to monitor their condition, 

then that sets both parties up for potential 

problems later on. Part of the problem 

with diagnosis is that symptom clusters 

overlap, and so it can be very hard to 

determine exactly what it is that’s causing 

the feelings the patient is experiencing. I do 

think, though, that it’s particularly difficult 

for pituitary patients. The endocrine 

system is particularly complicated, and 

getting a good working knowledge of 

your condition can be very difficult. How 

are patients supposed to know what tests 

are needed and how to interpret those 

results? Lots of patients with chronic 

conditions find that they have to become 

expert in their levels of knowledge, 

but not all healthcare professionals 

acknowledge their expertise, while some 

others just assume an appropriate level of 

knowledge in their patients which is fine 

if they’re right, but if they’re not, it leads 

to problems. 

No trust in the body anymore 

I don’t think that some healthcare 

professionals understand how having 

a pituitary condition affects as person’s 

relationship with their body, and what 

that means for them. To be told you 

have a brain tumour has to be one 

of the most shocking things that can 

happen to someone. Radiotherapy 

is a particularly difficult treatment to 

undergo, and the long-term effects, as 

Peter says, are profound not just in terms 

of physical functioning, but also in terms 

of psychosocial functioning, too. Many 

of the patients with whom I work often 

confess that they don’t trust their body 

any more. It has let them down badly and 

they’re not sure what it’s going to do next. 

They live in quite an anxious state which 

affects everything that they do. They can 

never relax and trust that everything will 

be OK. 

Every day in many ways, your body will 

give you information about what’s going 

on with it. In the context of a fearful and 

untrusting relationship with your body, 

how do you know how to interpret that 

information? Remember, post-treatment, 

pituitary patients are living with a changed 

body. Hormone replacement therapy 

may be effective, but equally it may not 

be, or it may require some finessing. It 

can be very difficult for patients to know 

what symptoms to report to their GP/ 

specialist. As Peter says, it’s not just about 

one domain of life, it affects everything, 

but a lot of healthcare is focused on purely 

physical functioning, and patients can feel 

discouraged or prevented from talking 

about their other signs and symptoms that 

something is wrong. 

Difficult for men 

I think it’s particularly difficult for men. 

When psychologists design questionnaires 

(aka psychometric tests), we often look 

at how the different genders respond 

to the questionnaire. It’s very hard to 

get men to take part in such research, 

but when we do, we often find that 

their scores are often very different to 

those of the women who take part. So, 

for example, in a questionnaire where a 

high score indicates a problem, the male 


10 Professional articles 

participants will generally have a much 

lower score than the women, even in a 

situation where the physical conditions 

are matched between genders. One of 

my colleagues recently observed that he 

thought that this was because women 

complain more (thanks!). However, if 

you read Brene Brown’s book “Daring 

Greatly”, towards the end she talks about 

the strait jackets that both genders wear 

in relation to social functioning. Men are 

generally encouraged to be tough and to 

endure without complaining, and talking 

about their problems is considered a sign 

of weakness. I think this has a knockon 

effect in terms of how men access 

and experience healthcare. This is not 

to blame the men! I think as healthcare 

professionals we need to get better 

at understanding the very real gender 

differences associated with accessing 

healthcare, and improve how we elicit 

information from our male patients about 

what is happening with them. 

While it should be possible for 

patients to have a reasonable discussion 

about their monitoring and treatment, 

in reality it can be very difficult. If your 

basic relationship with your body is one 

of distrust, and you have a whole lot 

of feelings of various kinds that you 

don’t know how to interpret, the levels 

of anxiety you experience are likely to 

affect any communication you have with 

healthcare professionals. Anxiety can be 

related to control; the less control you 

feel you have, the greater the anxiety 

and this can lead to a strong feeling of 

frustration (especially if you feel you’re 

not being heard and/or supported) 

which can eventually end up with a 

patient feeling very angry and let down. 

I think that’s one of the things that really 

troubles me about Peter’s story; the 

lack of dignity and respect with which 

he seems to have been treated. For a 

healthcare professional to refuse to order 

a test “because it’s complicated” can be 

experienced by a patients as being told 

“it (you) aren’t important enough”. I 

shouldn’t need to comment on just how 

unacceptable it was to be made a source 

of amusement when he was scared and 

in pain. 

Finally, remember The Pituitary 

Foundation has many different ways of 

offering support. For a start there is the 

“Wellbeing Series” of booklets focussed 

on coping with the psychosocial aspects of 

pituitary conditions. There are also many 

other leaflets aimed at helping patients to 

deal with different aspects of life with a 

pituitary condition. The Foundation also 

has a telephone Helpline, Local Support 

Groups, National Conferences, and webbased 

services, too ■ 

Endocrinologist’s view 

Professor John Wass 

Patients and doctors are equal. 

Only the patient knows the 

symptoms and the doctor knows 

about endocrinology - and so can the 

patient know about endocrinology. 

Going to outpatients is like preparing 

for a meeting. You need to prioritise 

the symptoms that are topmost and 

make sure these come out first. Chest 

pain is obviously important but loss of 

the outer third of the eyebrows is not 

going to affect quality of life or lifeexpectancy. 

Take a list if necessary. 

You should know what you want to get 

out of the meeting with your doctor. It 

also helps to take a relative or a friend. 

All patients are different. If you are 

organised about the outpatient clinic 

appointment, they are more likely to be. 

You need to feel empowered. I think 

taking an interest in your condition is 

important. You should check your doses 

and your results. You should probably 

see your results and make sure they are 

satisfactory. You can get copies of them 

together with the copies of the letter your 

consultant has written; there should be a 

clear plan with your consultant of what 

you are going to do, and what the plan 

for monitoring treatment is. This should 

be clear to you, as well as to the person 

looking after you. 

If you are not happy, then you can 

politely but firmly do something about 

this. The consultant or registrar should 

listen and act. If you are seeing the 

registrar you can ask to see the consultant 

or you can see another consultant. This is 

all within your rights. This can all be done 

non-aggressively. 

These are some of the ways in which 

you can ensure that there is a satisfactory 

outcome to your consultation and your 

satisfactory progress generally ■ 


news Professional articles 

11 

“Too Hot? Too Cold?” 

Professor John P Monson MD FRCP FRCPI 

Emeritus Professor of Clinical Endocrinology, St Bartholomew’s and The Royal London School of Medicine and Dentistry 

Introduction 

In healthy people, body temperature is 

tightly regulated by a highly sensitive 

mechanism within the anterior 

hypothalamus, situated in the base of the 

brain. The upper limit is approximately 

37°C when measured rectally or orally 

and approximately 0.5°C lower if 

measured in the axilla (armpit). This 

control occurs by alteration in skin 

blood flow which directly affects rates 

of heat loss from the skin, by sweating 

which results in heat loss by evaporation 

and by regulation of metabolic rate 

which influences heat production. 

In surrounding temperatures which 

exceed body temperature, sweating is 

of paramount importance in promoting 

heat loss by evaporation but may result 

in dehydration if sufficient fluid intake 

is not maintained; increased skin blood 

flow does not have a protective effect 

when the external temperature is higher 

than that of the body. 

It is important to recognise that the 

sensation of feeling abnormally hot or 

cold very rarely indicates a rise or fall in 

body temperature, but is a reaction to 

the prevailing external temperature, or to 

increased body heat production. In fact, 

the reverse is the case, examples being the 

sensation of feeling cold when a person is 

feverish (pyrexial due to bacterial toxins or 

release of pyrogenic substances by immune 

cells) or a sensation of heat when a person 

suffers prolonged exposure to sub-zero 

temperatures and becomes hypothermic. 

Sensations of feeling abnormally hot or 

cold are recognised symptoms in specific 

endocrine conditions but are rarely associated 

with a change in body temperature because 

of the body’s ability to cope with threats to 

tight temperature control. The endocrine 

conditions in which a subjective sense of 

feeling abnormally hot or cold and those in 

which actual change in body temperature 

occurs are described at right. 

Thyrotoxicosis 

Most patients with thyroid overactivity 

will experience symptoms of feeling 

uncomfortably warm in ambient 

temperatures that others find comfortable. 

This is caused by an increase in metabolic 

rate and the mechanisms by which normal 

body temperature is maintained include 

increased skin blood flow, manifest as warm 

skin, and increased sweating. Increased 

skin blood flow may be responsible 

for the subjective feeling of heat. Body 

temperature is maintained within normal 

limits except in very severe thyrotoxicosis 

(the rare condition of thyroid storm) 

when the body’s control mechanisms are 

overwhelmed and pyrexia may occur. 

Hypothyroidism 

In contrast to the thyrotoxic situation, the 

patient with either primary or hypopituitary 

hypothyroidism may complain of feeling 

cold, compared with others in the same 

environment, the mechanisms being 

opposite to those in thyroid overactivity. 

At its most extreme, the patient with 

prolonged, untreated hypothyroidism 

may experience a decreased body 

temperature (hypothermia) and decreased 

level of consciousness, a condition called 

“myxoedema coma”. This is a medical 

emergency but fortunately is very rare. 

Adrenal disorders 

Fever may occur in patients with 

undiagnosed primary adrenocortical failure 

(Addison’s disease) and does not necessarily 

indicate an infection, although infection is 

an important precipitating factor in acute 

adrenal failure (adrenal crisis). Excess 

production of adrenal glucocorticoid 

hormones (Cushing’s syndrome) does not 

result in body temperature changes unless 

an infection is present. 

Tumours of the adrenal medulla 

(phaeochromocytoma) usually produce 

excessive quantities of noradrenaline and/ 

or adrenaline. In severe cases, increased 

body temperature may occur due to 

a combination of pyrogen (cytokine) 

production and increased metabolic rate. 

Hypothalamic disorders 

Abnormal function of the hypothalamus 

is a rare phenomenon occurring as a 

consequence of invasive tumours, surgery 

for tumours, head trauma, inflammatory 

conditions, tuberculous infection or viral 

infection (encephalitis). Hypothalamic 

failure results in reduced production of 

releasing factors which control hormone 

production by the pituitary gland. This 

will lead to one or more deficiencies 

of adrenal steroid hormones, thyroid 

hormone, growth hormone, testosterone 

and oestrogen. Production of antidiuretic 

hormone (vasopressin), which controls 

water excretion by the kidney, may also be 

decreased resulting in diabetes insipidus. 

Extensive hypothalamic damage may 

affect memory, reduce the sensation 

of thirst (hypodipsia) and disturb 

temperature regulation, predisposing to 

hypothermia in ambient temperatures 

significantly below physiological body 

temperature, as is the case in the UK. 

The latter phenomenon is not associated 

with a sensation of feeling cold and this, 

combined with reduced thirst sensation, 

renders the individual vulnerable and 

requires skilled and careful management. 

Summary 

Feeling hot or cold does not indicate 

that your body temperature has altered. 

Although these symptoms are frequent 

in endocrine conditions, particularly 

thyrotoxicosis and hypothyroidism, actual 

changes in body temperature are very 

rare. The commonest cause of an increase 

in body temperature is infection, and 

the clinical imperative will be to make a 

precise diagnosis of the site and nature of 

the infection to treat accordingly ■ 



Adrenal crisis: the patient’s perspective 

Alice Hacker, Sue Jackson, Dr Anna Crown. 

What is an adrenal crisis? 

An adrenal crisis is a lifethreatening 

but preventable 

emergency and is caused by 

an insufficient amount of a hormone 

called cortisol in the blood. 

What is cortisol and why is it 

needed? 

Cortisol is released from two glandular 

structures called the adrenal glands as a 

result of communication from parts of 

the brain called the hypothalamus and the 

pituitary gland. It has an important role in 

the body’s response to stress. 

Who is vulnerable to an adrenal 

crisis? 

If the function of the adrenal glands, 

the hypothalamus or the pituitary gland 

is impaired, the levels of cortisol in the 

blood can be significantly reduced. This 

is known as adrenal insufficiency. People 

with adrenal insufficiency are therefore 

more vulnerable to suffering an adrenal 

crisis. 

How can you prevent an adrenal 

crisis? 

People with adrenal insufficiency can 

increase the amount of cortisol in 

their blood by taking a tablet called 

hydrocortisone. 

Although this reduces their risk, 

people with adrenal insufficiency who 

are taking hydrocortisone tablets are still 

vulnerable to an adrenal crisis. An adrenal 

crisis can occur when the usual dose of 

hydrocortisone is not enough to meet 

an individual’s requirements. This can 

occur in times of stress because the body 

needs more cortisol than usual. In these 

circumstances, the dose of hydrocortisone 

must be increased to prevent an adrenal 

crisis. 

To make this process easier, the sick 

day rules were created to provide clear 

instructions on how and when to adjust 

Illness or stress 

situation 

Cold with no fever 

Fever, flu, 

infection 

the dose of hydrocortisone tablets. The 

Pituitary Foundation have included these 

rules in their patient information leaflet, 

an extract from which is shown in Figure 

1 above. For more information on the sick 

day rules consult the Pituitary Foundation 

leaflet or website, your doctor or specialist 

endocrine nurse. 

As well as following the sick day rules, 

people with adrenal insufficiency can wear 

a MedicAlert bracelet. This will notify 

medical professionals, such as paramedics 

or doctors that they are dealing with a 

person who is vulnerable to an adrenal 

crisis. Also, membership of a patient 

support organisation like The Pituitary 

Foundation or the Addison’s Disease Self- 

Help Group (ADSHG) can be helpful 

for support, advice and information on 

adrenal crisis. 

Our research study 

Increase of usual 

dose 

None necessary 

Double 

What did we want to find out? 

We don’t know very much about the 

thoughts and feelings people with adrenal 

insufficiency have about adrenal crisis. 

We believe that this could be a very 

For how long? 

For duration of 

fever 

Is this an 

emergency, or 

when do I seek 

help? 

See GP if still 

unwell after 48 

hours 

Figure 1: An example of advice on the sick day rules from The Pituitary Foundation patient information leaflet 

MedicAlert bracelet 

important part of being able to cope 

with, and manage adrenal insufficiency, 

and an adrenal crisis if it happens. We 

talked to a number of patients with 

adrenal insufficiency and explored their 

knowledge about, experiences of, and 

attitudes towards this highly preventable 

emergency. 

How did we conduct our study? 

We interviewed 24 patients with adrenal 

insufficiency from the Brighton and 

Sussex University Hospital. 

What did we find out? 

1. The incidence of adrenal crisis 

We found that 75% of the people in our 

study had suffered an adrenal crisis. This 

is a lot higher than previous research has 

estimated (roughly 24-50%). We believe 

that this might be because the people who 

responded to our study were more likely 

to have suffered an adrenal crisis. 

2. Causes of the self-reported adrenal 

crises 

The commonest cause for an adrenal 

crisis for the participants in our study 

was an illness (e.g. vomiting or diarrhoeal 

illness). See Figure 2 for an illustration of 

all the reported causes of adrenal crisis by 

the participants in our study. 

Some people were unaware of the 

cause, or did not specify the cause of their 

adrenal crisis. 



13 

Causes of adrenal crisis 

Emotional stress and undermedicated 

Diarrhoea 

Complicated of type 1 diabetes 

Cough/cold/lung infection 

Unsure 

Cause not specified 

Infected insect bite 

Dental work 

Alcohol 

Undermedicated 

Shock and injury 

Illness 

3. The memories of, and responses 

to, adrenal crisis 

A. Onset 

One-third of the participants remarked 

that their adrenal crisis came on suddenly. 

We predict that this could have a 

negative impact on an individual’s 

ability to manage an adrenal crisis. 

B. Calling for help 

Family and friends 

In response to their adrenal crisis, half 

of the participants relied on their family 

and friends. However, only two people 

received an emergency injection from a 

member of their support network, and 

very few people said that their family 

or friends would know how to respond 

appropriately. 

Therefore, we believe that involving 

family and friends in the prevention 

and management of adrenal crisis 

could help people to deal with it better. 

Medical professionals 

In our study, just under half of participants, 

or their family members, made contact 

with their general practitioner. The same 

number of participants went directly to 

accident and emergency. A small number 

of participants telephoned the NHS 

111 advice service, and one participant 

revisited their dentist due to feeling unwell 

0 5 10 15 

Uninary tract infection 

Vomiting 

Number of self-reported adrenal crises 

Response to adrenal crisis 

Kidney infection 

Bowel obstruction 

Family/friend 

General Practitioner 

Figure 2: The causes of the 

self-reported adrenal crises 

after their dental procedure. See Figure 3 

for a summary of these data. 

It is important to know how people 

respond to an adrenal crisis, to establish 

whether this is the most appropriate 

approach. 

4. Knowledge of adrenal crisis 

We know that an adrenal crisis occurs 

as a result of an insufficient amount of 

cortisol. Just over half of the participants 

could explain this in their interview. 

However, a quarter of participants 

thought that it was due to inadequate 

Figure 3: Sources of help sought in an emergency 

NHS 111 

Hospital 

0 2 4 6 8 10 

Administered emergency injection 

levels of adrenaline, or both cortisol and 

adrenaline. A small number of participants 

were unsure of the underlying biological 

processes of adrenal crisis. 

We believe that having a good 

understanding of the underlying 

causes of an adrenal crisis could help 

people to manage their illness better. 

Although 92% of people said that 

an illness or infection was a cause of an 

adrenal crisis, not one person mentioned 

all of the important causes of an adrenal 

crisis stated in the sick day rules. 

We believe that knowing the causes 

of an adrenal crisis could help people 

with adrenal insufficiency to prevent 

one from happening. 

5. Information on adrenal crisis 

Most people felt that the best source of 

information they had received on adrenal 

crisis was from a healthcare professional. 

The second best source was reported to 

be from a patient support group (either 

The Pituitary Foundation or the ADSHG) 

see Figure 4. However, many people felt 

that more information was needed, and 

some mentioned that the information on 

adrenal crisis was only given at diagnosis. 

We believe that frequent reminders 

of the sick day rules and information 

about adrenal crisis may be needed to 

help people to retain this information 

better. 

Number of participants that gave this response 

Sought medical attention 



Best source of information 

NHS booklet 

Figure 4: Sources of information on adrenal crisis 

Internet 

ADSHG and a health care.. 

ADSHG/Pituitary foundation 

Health care professional 

0 2 4 6 8 10 12 14 

Number of participants that gave this response 

Doctor Consultant endocrinologist GP Hospital staff 

7. MedicAlert bracelets 

Seventeen people (71%) owned a 

MedicAlert bracelet, but six did not 

like wearing one or did not want one. 

Four people said that this was because 

the bracelet did not look nice, and eight 

people felt that they were impractical to 

wear. 

The thoughts and feelings that people 

have about MedicAlert bracelets are 

useful for us to know, because they are 

less helpful if they are disliked by patients 

and worn inappropriately. 

Our study suggests that most of 

our participants wear and like to wear 

a MedicAlert bracelet. 

6. Attitudes towards adrenal crisis 

A. Negative feelings 

58% of the patients we interviewed 

described negative feelings towards their 

risk of adrenal crisis. This included feeling 

scared, vulnerable, insecure, resentful, 

annoyed, superstitious, depressed or 

anxious. We have included a quote taken 

from one of the participant’s interview 

script in the image below. 

risk. We have included two quotes from 

the interviews below to demonstrate 

examples of these coping strategies. 

“I don’t feel anything. I 

don’t think about the illness 

at all. I just get on with it. 

Take pills and get on with life. 

Is something that just is.” 

8. Patient support groups 

54% of our participants were members 

of a patient support group, but 42% 

felt that experiences shared in support 

groups could be unhelpful if negative, or 

frightening. This could be a problem with 

support groups that needs addressing. 

We have included a quote from one 

of our participants about the negative 

experiences shared on support group 

websites below. 

“Frightened. I can’t 

describe how helpless you 

are. You actually get that 

close to wanting to go to 

a place - that’s death. 

Vulnerable.” 

B. Concerns 

About a third of our 

patients described a lack 

of trust in others to act 

appropriately, including 

health care professionals, and were fearful 

that an adrenal crisis could be fatal. More 

than half had had a negative experience 

involving health care professionals in the 

context of an adrenal crisis, and almost a 

third recalled experiences where they felt 

ignored or not listened to. 

C. Coping mechanisms 

29% of the people in our study tried to 

ignore the risk of adrenal crisis, and half 

focused on negative aspects of their 

“It is depressing that your 

body could let you down. It 

limits options - I want to go to 

India or go Skiing. It is always 

in the back of my mind” 

We believe that negative emotions, 

experiences, concerns and ineffective 

coping mechanisms could impair 

someone’s quality of life and ability to 

prevent and manage an adrenal crisis. 

We need to explore these negative 

attitudes further to establish whether 

we need to support people with adrenal 

insufficiency better. 

“Forums are full of 

negativity. People who can’t 

get out of the bed in the 

morning. If newly diagnosed 

this might be scary” 

Despite this, it is encouraging 

that most people felt that 

support groups were useful 

in terms of providing 

information support and advice. 

What does this all mean? 

Our study suggests that involving 

the patient’s support network in the 

management of adrenal crisis could 

help people to cope with it better. It also 

suggests that more information from 

healthcare professionals is wanted and 

may be required. 

Furthermore, we found that some of 

the patients in our study have negative 



15 

thoughts and feelings about adrenal crisis, 

healthcare professionals, MedicAlert 

bracelets and patient support groups. We 

believe that this could explain the gaps 

that some people have in their knowledge 

and their motivations to prevent and 

manage an adrenal crisis effectively. 

We predict that the introduction of 

interventions that empower and support 

people with adrenal insufficiency who 

have negative perceptions of adrenal 

crisis could help to improve their quality 

of life, their ability to cope with adrenal 

insufficiency and reduce the number of 

people who are affected by an adrenal 

crisis ■ 

Where do 

you rub your 

hormone gel? 

A 

male patient uses Tostran gel 

and his testosterone blood 

test levels were puzzling as 

they fluctuated widely, so that his 

dose had to be titrated. He says that 

phlebotomy always took blood from 

the same arm as his veins were better. 

The patient suggested to his 

endocrinologist that, as he rubs any 

excess gel onto his arms once he finished 

applying it to other parts of his body, this 

may be the reason. So to test is his theory, 

he had bloods taken at exactly the same 

time, using both arms. It revealed: 7.9 

first arm sample – 32.5 other arm sample. 

These of course were fascinating results 

and his endocrinologist will present these 

findings with his colleagues to learn from 

this. 

He now of course won’t rub excess gel 

on to his arms on blood test days, so that 

‘clean accurate samples’ can be obtained 

and the correct dose of the gel is given ■ 

Prescriptions for your 

hormone replacements 

You can get free NHS prescriptions 

if you suffer from a number of medical 

conditions, including diabetes insipidus 

and other forms of hypopituitarism i.e. 

free prescriptions are available for patients 

suffering from pituitary conditions who 

require at least one of the following drugs: 

• Hydrocortisone or prednisolone 

• Thyroxine 

• Desmopressin 

• Testosterone 

• Oestrogen 

• Growth hormone 

You will need a Prescription Charge 

Exemption Certificate (FP92) which you 

can get from your Health Authority. To 

obtain the certificate you must complete 

form FP92A (EC92A in Scotland) which 

is available from your doctor, hospital or 

pharmacist. The form (which will need to 

be signed by your doctor) tells you what to 

do. These certificates only last for a finite 

period after which they must be renewed. 

Your health authority may automatically 

send out an application for renewal. 

Unfortunately, bromocriptine, cabergoline 

and quinagolide are not exempt 

and you will have to pay for these unless 

you qualify for free prescriptions. Also, 

testosterone, oestrogen, and thyroid replacement 

therapy is not exempt if you 

do not suffer from hypopituitarism. 

Information about free prescriptions 

and the full list of medical conditions 

which qualify for exemption from 

prescription charges can be found in 

leaflet HC11, available from pharmacies, 

some doctors’ surgeries and main post 

offices. Information can also be found on 

our website. 

If you are not sure whether you are 

entitled to free prescriptions, you must pay 

for your prescription and ask for a NHS 

receipt (form FP57 in England, EC57 in 

Scotland) when you pay; you can’t get one 

at a later date. This form tells you how to 

get your money back. 

Pre-payment certificate 

If you are not entitled to free prescriptions 

and you think you will have to pay for 

more than five items in four months, or 

more than 14 items in 12 months, you 

may find it cheaper to buy a pre-payment 

certificate. More information can be 

found on our website. 

Prescriptions charges in the 

Republic of Ireland 

Long-term illness scheme 

If you are a patient in the Republic of 

Ireland and you suffer from certain 

long-term medical conditions, including 

diabetes insipidus, you are entitled to get 

the drugs and medicines for the treatment 

of that illness free of charge. More 

information can be obtained from your 

local Health Board or online at the Citizen 

Information Board. 

Drugs payment scheme 

If you do not qualify for a medical card, 

you are required to pay for all drugs and 

medicines not covered under the longterm 

illness scheme (above). Under the 

drugs payment scheme, a single payment 

covers all prescribed drugs and medicines 

purchased during one calendar month. 

More information can be obtained from 

your local Health Board or online at the 

Citizen Information Board ■ 


16 patients Professional Patients’ stories articles 

Carl’s story 

My story started in February 2013, when a fairly 

routine visit to the doctor resulted in me getting 

some blood tests done. I happened to mention that 

I had lost a lot of body hair, it wasn’t even why I went to 

the doctor in the first place. I didn’t rush to have the test - I 

hated needles back then. 

I had the test around 11am on one day, I had a call at 9am the 

following day from my doctor….or at least my wife did because 

I was at work. “Can I speak to your husband? Where exactly is 

he and what is he doing right now?” were the questions my wife 

received. “I’ve made an appointment for him this afternoon, 

make sure he comes along”. My wife phoned me at work to relay 

this information, the rest of my day was spent worrying and 

Googling possible illnesses. 

Low cortisol levels 

I visited the doctor as planned and he told me I had very low 

cortisol and testosterone levels, he was very concerned about the 

low level of cortisol. In fact my cortisol was so low the doctor 

didn’t really understand how I was still walking. He immediately 

prescribed me hydrocortisone tablets which would replace my 

cortisol, booked lots more blood tests, and an urgent referral to 

an endocrinologist in the nearby Portsmouth QA Hospital. 

The first few weeks on hydrocortisone were very odd, it was like 

something in me had not only woken up, but gone into overdrive. I 

was hyper and it wasn’t a feeling I was used to. In the years leading 

up to this point, I was not a hyper person. I hadn’t given it much 

thought as to why, just that I must be getting old and slowing down 

and this was to be expected. Of course, with hindsight there were 

various symptoms I had discounted or ignored. I had several near 

fainting episodes, loss of body hair, weird vision at times, constantly 

feeling cold, poor fitness and loss of muscle, extreme lethargy, and 

a general lowering of my outlook on life…very negative attitude. 

Not so much a ‘can do’ attitude, but a ‘can’t do’ attitude! It is a 

wonder my wife didn’t divorce me. 

I heard the word “tumour” 

My appointment with an endocrinologist, Dr Partha Kar, came 

up in April 2013 and he baffled me with lots of terms and 

phrases I’d not heard before. He was fairly sure I had a pituitary 

tumour, or adenoma as he called it. He needed to send me for an 

MRI scan to be sure. At that point I heard the word “tumour” as 

I’m sure a lot of pituitary patients do. I was told not to worry, as 

99% of them are benign, but of course I did worry. Actually Dr 

Kar was a complete Godsend, he helped me through my journey 

and I feel very lucky to have him as my consultant. 

The next part of the story happened really quickly. 18 May 

2013 - MRI scan, 24 May - appointment with Dr Kar, confirming 

a 3cm non-functioning macro-adenoma, which was affecting my 

optic nerves. On 25 May (a Saturday), a call from the Wessex 

Neurological Centre in Southampton hospital to come in for an 

operation, which happened on the 28 May 2013….a date I will 

never forget! 

The operation (via my nose) was a success and the 

neurosurgeon, Mr Mathad, felt he got almost all of the tumour. I 

spent five days in hospital and felt relieved to get home. However, 

that was not the end of the story. On 22 June I was admitted 

to hospital again, and it was not a good visit. When I was first 

discharged from hospital I was given all the ‘sick-day’ rules about 

doubling up on hydrocortisone, but at that point I hadn’t had 

the education about an emergency steroid injection if I needed 

it, nor did I have the injection kit. I had been feeling unwell 

and it turns out I had laryngitis and pharyngitis infections and 

they were running riot through my system, which was already 

at a low ebb having had my operation. What I then suffered 

was an adrenal crisis because my body could not cope with the 

stress of the infections. However we did not recognise that. I 

was vomiting and not keeping my tablets down, so my wife rang 

the out of hours doctors service (June 22 2013 was a Saturday) 

and explained my predicament. Luckily, the doctor recognised 

the seriousness and booked me straight into A&E and sent my 

wife off to hospital with me. To be honest, I don’t remember 

very much about that day or the next couple. I spent another five 

days in hospital. So far, it has been my only adrenal crisis thank 

goodness, although I am much more informed now and do have 

my injection kit. 

The most sobering thought from this whole episode looking 

back, was the difference between recovery from a pretty major 

operation and an adrenal crisis. After my initial operation, I felt 

a bit weak, but otherwise not too bad considering. I was feeling 

a bit sorry for myself, but I had started to do some walking and 

I could see the path ahead clearly. My vision problems were 

sorted almost as soon as the operation was finished, my optic 

nerves had been cleared of the pressure from the tumour and 

my peripheral vision was back. 

However, the recovery from the adrenal crisis was a completely 

different affair. I lost a stone in weight and was at the lightest 


Professional news Patients’ stories articles 

17 

glad it did because frankly, it was really horrible! 

After all that excitement, things calmed down a bit. Many more 

tests ensued and in September 2013 I had a ‘short synacthen’ test 

to see if my body was capable of producing any cortisol of its 

own. The day after the test I had a phone call from the endocrine 

nurse to say I only scored around 70 out of the 500 it should 

have been. So, I definitely needed to stay on the hydrocortisone, 

quite probably for ever. When my first blood tests came back in 

February 2013, I had various hormone imbalances including my 

thyroxine being very low and some parts of my full blood count 

were way out. But by September everything had stabilised, except 

the cortisol and the testosterone. So I started replacement for 

the testosterone in October and it has been an increasingly good 

picture ever since then. 

I’d been since school. 

I spent the first two 

weeks out of hospital 

sitting on the couch 

barely able to walk 

around. I cried quite a 

lot, it took a good six 

months to get over it 

to be honest. Adrenal 

crises are life threatening, 

I know that now, 

I’ve had a taste of how 

quickly things can go 

wrong for patients 

who rely on hydrocortisone. 

The only other nasty episode in amongst all of this was transient 

Diabetes Insipidus (DI). After my operation I had DI. It was 

immediately ‘cured’ by a quick injection but it did come back after 

a couple of weeks. I tried to manage it without success and I was 

eventually prescribed desmopressin. My case confused the doctors 

slightly as the tests they looked at didn’t really show DI - but my 

symptoms did. Luckily, I gradually weaned myself off the tablets 

and after about eight weeks my transient DI had gone away. I’m so 

A lot healthier 

Looking at pictures of me now, versus pictures of me prior to 

2013, I do look a lot healthier. Dr Kar said when I first saw him I 

looked like ‘the typical pituitary patient’ when he first sees them. I 

was thin in the face and very pale, whereas now I am much fuller 

in the face and often quite red cheeked. Prior to diagnosis, people 

at work would say to me “Are you ok, you look very pale”, and I 

said “Yes of course I am well”. I should have listened to them! 

I have been working hard on my fitness for the last couple of 

years. I walk a lot and I have been doing pilates. All my muscle 

tone has returned now. As I said, my vision is back to normal, 

about the only thing I have to contend with is the occasional 

cortisol ‘low’. There are some days when that ‘low cortisol brain 

fog’ hits you unexpectedly, but nothing a sit down, an early 

hydrocortisone dose and a bite to eat doesn’t cure. It isn’t difficult 

to solve, but it is an inconvenience, nonetheless. 

I feel that all in all, my journey has been not too bad. If it 

hadn’t been for the adrenal crisis event, things may well have been 

a lot more straightforward. Subsequent MRI scans have shown 

no further growth of tumour, so that is a good thing. I feel quite 

lucky to have come through all this with good health and just 

the need to take a bit of medication, things turn out a lot more 

complicated for some pituitary patients. 

I have also written a blog about my experience. If you want to 

read it, find it at www.chpituitarytumourblog.blogspot.co.uk ■ 

Christina’s story 

“Though nobody can go back and make a new 

beginning…..Anyone can start over and make a 

new ending.” Chico Xavier 

My journey into the world of 

pituitary diagnosis came 

suddenly and without 

warning. My first attempt to write 

this piece focussed on the pain and 

trauma that the few weeks in October 

2008 produced – the pain of which 

is still etched clearly in my memory. 

Since then, the journey has developed 

from the initial thunderbolt shock of 

realising that your life has changed 

irreversibly, the fear of not knowing 

what the future holds, the grieving 

for the person you were before, the 

shattering of your dreams, to the 

acceptance of how things are, to 

finally, the hope and joy for the future. 


18 patients Patients’ stories 

I was 28 years old with two very young 

children, when I suffered a pituitary 

apoplexy. In those moments, I suddenly 

became totally reliant on the wisdom and 

knowledge of the doctors and the hospital 

staff. I was suddenly confronted with my 

own mortality and the frailty of life. I was 

told that I was lucky the bleed had not 

spread to the rest of my brain – there was 

some uncertainty surrounding the cause of 

the problem. In those moments of fear and 

uncertainty, I clung to my faith in God like 

a limpet to a rock – I could do nothing else. 

Initially, I didn’t understand the impact 

of the loss of pituitary function. My main 

concern was that I was unable to have 

any more children. I grieved this loss, but 

rejoiced in the fact that I had two beautiful 

children already – a blessing. It has only 

been in the years since then, that I am 

becoming more aware of the everyday 

impact of not producing cortisol – this 

amazing hormone that effects every part 

of our physical and mental health. 

Long recovery 

In the early days, life was strange – 

recovery was a long and laborious 

process. My brain reacted in ways that I 

wasn’t prepared for and was unsure how 

to handle. Life went on around me and 

I felt like I was isolated in a bubble that 

no-one understood – and yet I didn’t want 

to talk about it. I couldn’t handle small 

stresses and my speech and memory were 

affected – I couldn’t formulate or think of 

the words I wanted to say. I didn’t feel like 

myself and felt like my body wasn’t my 

own – I couldn’t predict its behaviour or 

trust it to do what I wanted it to do. 

Turning off all the lights 

One of the hardest things has been my 

body’s reaction to low cortisol. These 

symptoms can be difficult to explain, and 

I assume they can be slightly different 

for each person. Strong nausea and 

sometimes overwhelming and abnormal 

anxiety can be common symptoms for 

me. Sometimes, I describe it like someone 

is turning off all the lights in an office – 

it’s getting gradually darker but you don’t 

notice until the last light is off. I have also 

adjusted when to take my tablets to fit in 

with how my life is running at the time. 

With four young children who rise early 

but go to bed early, at the moment I take 

my tablets much earlier than average. I am 

sure that as the challenges I face change, 

then I will need to adapt again. 

To cut a very long story short, nearly 

eight years on, I am constantly amazed by 

the healing power of our bodies – both 

mentally and physically. I now have four 

miraculous children and am studying for a 

degree in psychology. This year, I also took 

part in a Tough Mudder race for the charity 

Mind – and I would like to do another 

challenge for The Pituitary Foundation. 

This was significant for me as I felt like 

I was challenging my own fears and the 

limitations I had put upon myself. Some 

days though, the challenge of getting out 

of bed and keeping a positive attitude is 

enough of an obstacle in itself! 

Undoubtedly, I still have a long journey 

ahead – to live with a cortisol deficiency 

is to live with something that many 

will never understand – and that is too 

complicated to explain. And yet, I am 

growing to appreciate the story of my life 

and the challenges I have faced. I reflect 

that I am humbled when I read of others 

stories and meet others who have their 

own stories to tell, and I am forever in 

awe of the miracle of our bodies – I never 

appreciated it fully before. I thank God 

for the support of my incredible husband 

and family who have been immensely 

tolerant with me, and my consultant who 

has been a patient, loyal doctor and friend 

over these many years. 

Every so often, something happens 

to remind me of the seriousness of my 

condition – when some kind of stress 

occurs outside of my control and my 

body reacts without consulting my brain! 

Sometimes this can be as simple as a bad 

cold, a sickness bug, a child breaking 

their arm, your husband dislocating his 

knee……. Sometimes it is merely when 

I have misjudged the stress of the day, 

and suddenly I feel like it is the middle 

of the night at 6pm! As time goes on, 

I am becoming more comfortable in 

knowing my own limits, although it can 

be frustrating and awkward to explain this 

to others. I am thankful for the medical 

personnel around who have heard of and 

understand the condition. 

However, as I reflect on all that has 

happened in the past, I am reminded of a 

quote by C S Lewis – “There are far, far 

better things ahead than any we leave 

behind.” I want to encourage each of you 

that happen to read this – whatever stage 

you are at in your diagnosis or condition, 

the future is good. You will get through 

this and you will emerge a better, stronger 

person than you were before. People may 

never understand your journey or your 

limitations, but you can adapt and you 

can thrive – and there is always help to be 

found for those that need it ■ 


Patients’ stories 

19 

Karl’s story 

I 

have used the forum and the website 

for advice, and generally trying to 

put my mind at ease since I was 

diagnosed with a pituitary tumour in 

March this year. It’s been very helpful 

for me, but I’ve not had the courage 

to join as a member and indeed post, 

until now. Hopefully, I can maybe help 

or answer any questions for anyone 

recently diagnosed and the first 

they’ve heard of the word pituitary is 

when they were diagnosed, because it 

hit me hard. 

I had a fall in January, well I actually 

passed out twice in a day. I have a history 

of heart rhythm irregularities, which was 

sorted a few years ago, but the hospital 

took one look at my notes and decided 

it just must be my heart and 

stuck a three day tape 

on me. Luckily, my 

employers provide me with private 

medical insurance and off I went to see 

a cardiologist. This was the best thing to 

happen to me, as the cardiologist dug very 

deep into my life, and after telling him 

several times I struggle to get out of bed 

in the morning, feel quite depressed and 

generally feel useless, he insisted I have 

an MRI scan after reviewing some routine 

blood tests. 

I was on my last day of a holiday in 

Spain with my wife and some friends 

when I got a phone call from my 

cardiologist, who told me what they had 

found on the scan. Unfortunately, he 

mentioned the words “brain tumour” at 

which point everything else he said went 

straight out of the opposite ear and I 

instantly thought the worse. When I got 

home I went straight to see him and 

he sat me down and explained 

that it was a benign tumour around 4cms 

in size and I had likely had it for ten years. 

This blew my mind really. He referred me 

to an endocrinologist back on the NHS, 

as I would get much better treatment, 

especially as it was likely I would need 

surgery. 

Felt very alone 

To cut a long story short, my 

endocrinologist put me on modified 

hydrocortisone, thyroxine and 

testosterone replacement gel, all of which 

I am still on now. He said I will need 

surgery but how quickly the operation 

would be organised would depend on how 

bad my eyesight is. I had the visual fields 

test which confirmed my right eye’s visual 

field was not great in comparison to my 

left, a direct result of the tumour. It was 

agreed I would meet the neurosurgeon 

to discuss when, how, risks etc. In May 

this year I met my neurosurgeon and he 

said he would put me on the list and the 

waiting list was around 4-6 weeks. 

I had a pre-op assessment fairly swiftly, 

but the 4-6 weeks passed, with no news. 

I chased and chased but this didn’t help. 

In the time from March when I was 

diagnosed, I felt very alone & it was as 

if nobody around me understood what I 

was going through, the worry of losing 

my sight, being on medication I know 

nothing about and the thought of having 

pretty invasive surgery. I don’t think I 

went a single day where I wouldn’t think 

about my situation at least once every ten 

minutes, sleep became almost impossible. 

Woke up with blurred vision 

On Wednesday 20 July, I woke up with 

blurred vision in my right eye and could 

see very little. At first I dismissed it as 

having something stuck in my eye, but 

after a few hours realised it wasn’t causing 

me any discomfort and was not getting 

any better, so I called the eye hospital and 

got an appointment for the next day. 

I went for the appointment and had lots 

of tests, one of which was my visual field 


20 Professional Patients’ stories articles 

test, which inevitably I failed miserably, 

so the eye doctor sent me for an urgent 

MRI. An hour later I was told my tumour 

had grown by half a centimetre which 

shocked me considering I’d had this for 

at least ten years. I was transferred from 

Bournemouth Hospital to Southampton 

that night and arrived at midnight at the 

neuro admissions ward and was straight 

away nil by mouth, officially now scared. 

Somewhat ironic 

Eventually I managed to get to sleep, I had 

arrived at Bournemouth hospital and been 

transferred to Southampton alone, as I just 

thought I was seeing the eye doctor. When 

I woke up at 7:30 I was still nil by mouth. 

Eventually at 8:30 the neurosurgeon came 

and saw me. He said you’re first on the list, 

you’re going down now get ready. This 

was somewhat ironic as it was not what I 

wanted at all. I’m not good in situations 

that I can’t control and was always of the 

view that I would have a couple of weeks 

to prepare for my operation after getting a 

date, but I was given 30 mins. None of my 

family could get to me in time, as we live 

an hour away, I was petrified and I broke 

down on the spot. 

Luckily the anaesthetist spotted my 

distress and he came over and talked 

to me. He was amazing and ‘almost’ 

completely put me at ease, at least to a 

point where I could actually get prepared 

for surgery and reduce my heart rate by 

probably 100 beats a minute. 

I had the surgery and woke in the 

recovery room, I was kept in there for 

around three hours as they were finding 

it pretty difficult to control my pain. The 

pain was bad, but my overriding emotion 

was total relief, it hurt like hell but I didn’t 

care. 

Recovering at home 

I spent seven days in hospital in total, 

and I’m writing this recovering at home. 

In hospital the pain was largely ok, apart 

from I would get a couple of really bad 

headaches a day which required oral 

morphine to control, but gradually I didn’t 

need the strong pain killers. By the time 

I was discharged I was taking 1000mg 

paracetamol four times a day. 12 days in 

and I’m down to just one sometimes two 

doses of 1000mg of paracetamol a day 

when in pain. 

Sneezing has become more and more 

frequent, and although I keep my mouth 

open when sneezing. Sneezing is quite 

painful, not to mention not very attractive. 

I’m also doing a nasal wash four times 

a day for six weeks. It’s not pleasant and I 

can’t wait for the six weeks to be up. 

I’m signed off work until the middle of 

September but may go back before if I 

feel I’ve recovered enough. 

I’m still taking the same medication, 

strangely they have doubled the 

hydrocortisone and levothyroxine, which 

I wasn’t expecting. I’m resigned to the 

fact I will be on that medication for life 

as the pituitary gland is so thin now that 

I’ve been told it’s very unlikely to recover. 

I accept that, although I’m still not fully 

sure what that means for me long term. 

I’m feeling very positive and am always 

very aware that there are people who 

are in much worse situations than me. I 

guess I wanted to share my journey so 

far and use it as a way of self-counselling 

if that makes sense, as probably the only 

people on the planet that can really relate 

to what I’ve been through in the last five 

to six months are the members on this 

forum and others suffering with pituitary 

conditions as well as professionals of all 

things pituitary. 

Even if nobody reads this, it’s helped 

me getting it all off my chest ■ 

Editor note: There is information and 

support available from The Foundation, 

if any of these stories raise concerns. 


Raising awareness 

21 

Pituitary Zip Wire in memory 

of Aidan Pennington 

On Sunday 19 June, The Pituitary Foundation organised the annual ‘Pituitary 

Zip Wire’ at Chepstow. We chose to dedicate this event to the memory of a 

former Trustee, Aidan Pennington, who sadly passed away last year. 

Aidan was a staunch supporter of The Pituitary Foundation and often joined us at 

fundraising challenges, as well as being our Secretary on the Board of Trustees. Indeed, 

just two years ago, Aidan joined us when we organised this event – despite his fear of 

heights – and he subsequently overcame his fear. He went on to take part in the much 

bigger “Zipworld” challenge a year later in Snowdonia raising several hundred pounds. 

We had supporters travelling from all over the country to join us, with some travelling 

from as far afield as Portsmouth and Hertfordshire. The day proved to be a resounding 

success with over £5,000 raised in the process and we would like to thank each and 

every individual who bravely took on this challenge to support us. Your support is 

greatly appreciated and we hope to see some of you again next year? 

If you would like to take on this challenge for us in 2017 then please e-mail 

jay@pituitary.org.uk to register your interest ■ 

2017 events 

Next year, we are looking to 

introduce a series of new 

events to our portfolio as well 

as organising our annual events. If 

you would like to take part in any 

of the following events then please 

e-mail jay@pituitary.org.uk for further 

information or to register your interest. 

Ben Nevis trek (4 June) 

Snowdon trek (19 March) 

Brighton Marathon (9 April) 

Tough Mudder (Summer TBC) 

Orbit Abseil (11 June) 

Spinnaker tower Abseil (8 April) 

Pen-Y-Fan trek (21 May) 

Pituitary Zip Wire (18 June) 

Alternatively, of course, if you want to take 

on a challenge of your own then we would 

love to hear from you. Over the past few 

years, incredible supporters have gone to 

great lengths to raise funds on our behalf. 

We have seen people running many miles, 

cycling extreme distances, jumping out of 

planes, swimming, scaling mountains and 

doing every imaginable challenge under 

the sun. Will 2017 be the year that you do 

something inspirational? ■ 


22 Professional Raising awareness articles 

Fundraising Groups 

Stowmarket Fundraising Group 

The Stowmarket Fundraising 

Group are raising money in 

support of Matilda. Her mum, 

Stacey Davey, explains why they are 

doing this. 

Matilda’s story 

“From birth Matilda suffered with hypoglycaemia 

and apnoea, staff battled to save her life as her 

breathing kept stopping. It was a very frightening 

time in the unknown. After a period of time in 

Neonatal Intensive Care, blood tests revealed 

problems and an MRI scan confirmed congenital 

hypopituitarism. Matilda is adrenal deficient, 

growth hormone deficient and also suffers with 

hypothyroidism. She will need daily injections and 

oral medication for the rest of her life and could 

face many challenges ahead. Adrenal crisis is life 

threatening and the work The Pituitary Foundation 

does to raise awareness of this is invaluable. 

The Pituitary Foundation have been an 

immense help to us with our baby girl. Life has 

been a real battle for her, and at times, very dark 

for us as a family. Pulling together and turning 

these horrendous experiences into something 

positive, that will benefit other children and adults 

like Matilda, is what is getting us through. 

When Matilda was diagnosed we had no idea 

that the charity even existed and we all want 

to raise awareness in our area, so that if any 

other families are in the same situation they will 

know where to turn. We obviously enjoy raising 

the money but of far more importance to us as a 

family is the awareness that we generate through 

our activities.” 

About our Stowmarket 

Fundraising Group 

Stacey will be supported with her 

fundraising efforts by partner, Adam 

Cook, son, Freddie Cook, and parents, 

Russell and Darlene Davey. They are 

hopeful that other friends and family will 

also support them. 

Fundraising to date has consisted of 

donations in lieu of gifts at Matilda’s 

christening and Matilda’s grandfather, 

Russell, took on the London to Paris cycle 

for his 60th birthday raising over £3,000, 

with several other events in the pipeline. 

The group are currently trying to push our 

lottery to family and friends, as the star 

of the leaflet is of course, the beautiful 

Matilda. 

To donate 

If you would like to donate to 

Matilda’s appeal then either 

Text TILD55 £10 to 70070 

Write a cheque made payable to 

“The Pituitary Foundation” and send 

to Matilda’s Appeal, The Pituitary 

Foundation, 86 Colston Street, Bristol, 

BS1 5BB 

On behalf of Matilda and her 

family, thank you! 

As you can see, any donation 

whatsoever will get the thumbs up 

from both Freddie & Matilda Cook! ■ 


news Raising awareness 

23 

Why Fundraising Groups are so important 

As you will all be aware as pituitary patients or carers, there is a real lack of awareness 

around pituitary conditions. Our Fundraising Groups, whilst obviously raising funds, also 

act as ambassadors to help raise awareness in their local areas. They often display posters 

or give talks and are key figures in helping us to raise awareness. 

Our aim is to create Fundraising Groups around the country to try and raise as much awareness 

as possible. If you would be interested in forming a group in your area then please give Jay a 

call on 0117 3701314 or e-mail jay@pituitary.org.uk ■ 

Windsor Fundraising Group 

The reality is that you can commit as 

much or as little time as you want. 

It’s all about just doing what you can. 

Before I started I never dreamt that we 

could raise as much as we have, but when 

you get started everyone starts to help 

and the community really gets involved. 

The level of awareness in Windsor 

has increased greatly as a result of our 

activities, not least, because whenever we 

organise events the local press are usually 

very good at running the story and they 

usually mention The Foundation, what 

they do and how to contact them” ■ 

Chepstow Stampede – 22 October 2016 

Gemma Simpson is our Windsor 

Fundraising Group Leader. 

Like the Stowmarket Group, 

Windsor Group are raising funds and 

awareness in support of Gemma’s 

son, Oscar. 

The Windsor Fundraising Group has 

been active now for several years and 

to date has raised over £12,000 towards 

‘Oscar’s Appeal’. This has been thanks to 

a successful football tournament, an Easter 

fayre, cake sales, friends taking on skydives, 

other friends cycling London to Paris and 

a fantastic charity night, amongst other 

things. The next event planned by the group 

is to raise funds at the annual Eton Wick 

fireworks display in November and they are 

hoping that lots of money will be raised as 

well as vital awareness in the process. 

Fundraising Group Leader, Gemma 

Simpson, said “I always associated the 

role of Fundraising Group Leader as 

being time consuming, and with having 

children I did not think that was for me. 

Registration: £10 

Minimum sponsorship: £30 

The course has been designed 

to introduce the novice to 

the physical demands of 

cross-country running, whilst also 

challenging the hardiest, elite 

runners, testing your speed, strength 

and endurance over 5km and 10km 

distances. 

There will be tough obstacles, including 

man-made horse hurdles and maximises 

the natural obstacles of the stunning 

surrounding landscape, including ditches 

and mud pits. 

You’ll scale steep banks, conquer legburning 

hills and wade through waistdeep 

water, as well as running through the 

picturesque surroundings of Chepstow 

Racecourse and Piercefield Park, while 

taking in beautiful sections of the Wye 

Valley Walk – if you have any energy left 

to enjoy the view!! 

We currently have 20 people signed up 

to take on this challenge, including staff, 

Jay Sheppard, Fraser Cardow, Martin 

Cookson, Emily Mullen and Sian Pitman. 

If you would like to take up this challenge 

which promises to be lots of fun, then 

please get in touch ■ 


24 Professional Wall thanksarticles 

Sponsored walk: 

Kirsty Lane, a pituitary 

patient and nurse from 

Bury, organised a 15 mile 

sponsored walk with 20 of 

her friends and colleagues 

and raised over £700 

Springtime Tea coffee 

morning: Our thanks to 

Bettyanne Goodhall 

who organised a Springtime Tea 

coffee morning raising £217 

Tough Mudder & Mini 

Mudder : Congratulations to 

pituitary patient, Scott Young, 

and family for completing ‘Tough 

Mudder Yorkshire’ for us and 

raising over £350 

Garden party: Thanks 

to pituitary patient, Thea 

Beckhelling, who raised 

£192.80 through hosting a 

garden party with neighbours 

Golfing success: Thank you 

to Ashford Manor Golf Club 

who chose us as their charity of 

the year for 2016/17, and raised 

£900 at their first event in May, 

the Captain’s Cup 

London to Paris 

cycle: Russell Davey, 

60, from Stowmarket, 

cycled ‘from London to 

Paris’ in support of his 

granddaughter, Matilda, and 

raised a whopping £3,156 

Collecting tin: Thanks to 

Mary Brettle-Scott who 

raised £58 at a collection at the 

Crispin on our behalf 

Tough Mudder Yorkshire 

– Jarrod Gritt took part 

in the Tough Mudder as part 

of his fundraising efforts. He is 

also taking part in several other 

challenges 

Annual Spring Pruning in 

Reepham: Thank you to member, 

Elisabeth Kiener, who raised 

£205 at this annual event 

School fundraising: 

Thank you to Jack Hunt for 

raising £138 through fundraising 

at a concert for the sixth form 

leavers at Hull Collegiate School 

Cake sale: Our thanks to 

Jo Vidler who organised a 

cake sale at work and managed 

to raise £38.11 

Great North Run: Our 

team of runners pounded 

the pavements of Newcastle 

to complete the Great North 

Run. Collectively, they have 

raised over £3000 between 

them. Thank you to all of 

our runners ■ 


news Raising awareness 

25 

Summer Raffle 2016 

Ahuge thank you to everyone who bought tickets for 

our Summer Raffle. Thanks to those who took part we 

have raised a grand total of £5640 to put towards our 

vital work supporting the pituitary community! Here are the 

winners: 

1st Prize: £300 John Lewis Voucher – Ann Corringham 

2nd Prize: iPad Mini 2 – Lesley Dove 

3rd Prize: £50 – Debbie Rossiter 

Congratulations! ■ 

‘Cash for Christmas’ Raffle 

Win one of our fantastic cash prizes to buy those 

special little extras to make this Christmas one 

to remember! As an added bonus, you will be 

helping us to support those pituitary patients that need our 

help and caring support over the festive period and in the 

New Year. 

The Pituitary Foundation raffle has been an absolutely fantastic 

source of income for our charity over the last few years, allowing 

us to continue our work and reach out to as many pituitary patients 

as possible. Over the last three years we have answered 7,000 calls 

to our helpline and our website has received 230,000 visits! We 

really couldn’t do it without your help. Thank you! 

This year’s ‘Cash for Christmas’ raffle is bigger and better than 

ever before! We are running two raffles alongside each other, 

with supporters receiving one book for each raffle. That means 

that there are two of each prizes up for grabs. 

Buy tickets from each book to double your chance of 

winning! 

Why not ask friends, family and colleagues to participate by 

buying tickets? Christmas gatherings are the perfect place to pass 

tickets on to your friends. 

First Prize £300 x 2 

Second Prize £200 x 2 

Third Prize £50 x 2 

Please return your ticket stubs, or any unwanted tickets back to 

us by 15 December in the envelope provided. If you would like 

any additional tickets, please email fundraising@pituitary.org.uk 

or call the office on 0117 370 1333. The draw will take place on 

16 December when we will notify all 6 WINNERS!! 

Good Luck! ■ 


publishing 

26 Raising awareness 

Merchandise 

The Pituitary Foundation shop has 

been re-stocked for Christmas! 

Every order helps us continue 

to provide up-to-date information 

and caring support to all those with 

pituitary conditions. Just £23 will 

fund a dedicated phone call to our 

Endocrine Nurse Helpline. Make a 

difference – shop today! 

Enclosed with your copy of Pituitary 

Life is our Christmas Merchandise 

catalogue. We are excited to launch our 

first range of gifts, designed exclusively 

for The Pituitary Foundation. I hope 

you agree that these products, featuring 

a beautiful floral design in our brand 

colours will make fantastic stocking fillers 

for friends and family alike, or even a treat 

for yourself! 

As in previous years we have chosen a 

new set of Christmas cards, the perfect 

way to keep in touch with loved ones and 

to wish them a happy Christmas. Each 

pack contains 10 cards and envelopes. 

The greeting inside reads ‘With Best 

Wishes for Christmas and the New Year’ 

To place an order, either fill in the form 

on the back of the merchandise catalogue 

and return with a cheque to us, or buy 

online by visiting www.pituitary.org.uk 

where you will find our full range of gifts. 

All profits from sales of Christmas 

cards and merchandise go towards our 

vital work providing information and 

support to the pituitary community. 

As a special treat – every order 

over £20 will receive a FREE 

bottle opener- in perfect time for 

a Christmas tipple! No delivery 

costs will be added to your order, 

whatever the size! 

Wishing you a very merry 

Christmas! ■ 

CHRISTMAS CATALOGUE 2016 

Just £23 funds a dedicated phone call to our Endocrine Nurse Helpline 

MAKE A DIFFERENCE- SHOP TODAY! 

impress 

Pa Rum Pum Pum Pum 

Courtesy of Louise Cole 

T02 

Impress Publishing - CT1 3TE 

impress 

publishing 

impress 

publishing 

impress 

publishing 

impress 

publishing 

TPFT06 

Flying Angels 

Courtesy of Sarah Summers 


TPFT09 

Red Christmas Tree 

Courtesy of Louise Cole 


TPFT10a 

Orange Flowers 

Courtesy of Image Source 


TPFT10b 

Lavender 

Courtesy of Corbis 



Raising awareness 

27 

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. 

This regular article in the magazine 

keeps our members informed about 

our recent activities, and offers details 

about how to get involved in the three 

campaigns we run each year. 

l The decision was announced in the 

summer that we helped to ensure that 

Pasireotide has now been approved 

and made available on the NHS in 

Wales. Pasireotide is a new medicine for 

those with uncontrolled Acromegaly. 

This follows our involvement in the 

same process in Scotland, which saw 

Pasireotide being approved last year. 

l The Pituitary Foundation are now 

involved in a new rare disease Cross Party 

Group in Wales. The group includes: Rare 

Disease UK, Genetic Alliance, and patient 

organisations Turners, Cystic Fibrosis, 

and Tuberous Sclerosis. Cross Party 

Groups are a good forum for lobbying 

governments and provide a coordinated 

approach to campaigning. The group 

will be launched in February 2017 and 

in the meantime we will be involved in 

the group’s set up and ensuring pituitary 

issues are on the agenda. Rosa Watkin will 

be the staff member taking part. 

l We have recently completed a patient 

group submission to support Plenadren 

being made available in Scotland to 

patients who would benefit from it. 

Thank you to the patients who took 

part in our consultation process and 

provided case studies. Plenadren is a 

modified-release tablet which allows for 

a single daily dose for the treatment of 

Adrenal Insufficiency. 

l Our Know your insipidus from your 

mellitus campaign will close once 

Awareness Month starts but there is still 

a couple of weeks left to get involved. 

We have had a fantastic response from 

our members, and The Foundation has 

contacted over one hundred hospitals 

to raise awareness about DI and how 

desmopressin is a life- saving medication. 

We are still looking for participants 

to write to their local A&E staff, ward 

nurses, and pharmacists - all working in 

non-endocrine hospital settings. Please 

email campaigns@pituitary.org.uk to 

be sent a template letter. 

l We are also busy preparing for October 

Awareness Month, find out how to 

get involved on page 3. The theme is 

early diagnosis, focusing particularly on 

improving optician awareness about 

pituitary tumours. 

For any queries relating to campaigns and 

policy work please call 0117 370 1316 or 

email campaigns@pituitary.org.uk 

and Rosa, our Campaigns, Volunteers & 

Events Manager will be happy to help. 

To find out more, see how you can get 

involved, or for details about becoming a 

Volunteer Campaigner you can also visit 

the ‘Campaigns’ section of our website ■ 

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: 


You’re invited! 

The Pituitary Foundation cordially invites you 

to the inaugural Masquerade Ball. 

Come and join us for a very special evening of exquisite 

food, fine wines and champagne in a luxurious hotel in 

the heart of exclusive Mayfair. This promises to be a 

magical and unforgettable evening and an event that 

you will not want to miss. 

Join us to help raise vital funds to support pituitary 

patients in their hour of need. 

When: 

Where: 

Cost: 

Saturday 15 October 2016 

Millennium Hotel London Mayfair 

£130 per ticket (£1,300 per table of 10) 

Price includes: 3 Course meal, fabulous entertainment, champagne 

reception, auction, raffle plus many more special surprises! 

Dress code: Black tie (mask optional) 

This edition has been kindly sponsored by an 

educational grant from Actavis. Actavis has no 

involvement via its sponsorship regarding the editorial 

content of the Pituitary Life Members Magazine. 

Contact us: 

Editor: Pat McBride: 0117 370 1315 

or pat@pituitary.org.uk 

Patient support & Information Helpline: 

0117 370 1320 (Monday to Friday 10:00am – 4:00pm) or 

helpline@pituitary.org.uk 

Endocrine Nurse Helpline: 0117 370 1317 

(10:00am to 1:00pm and 6:00pm to 9:00pm on 

Mondays, also on Thursdays 9:00am to 1:00pm) 

General enquiries for non-patient support 

enquiries 

Main switchboard: 0117 370 1333 

or enquiries@pituitary.org.uk 

Please use this number and email for: 

• Website and log-in issues 

• Publications orders 

• Merchandise 

• Conference 

• Any non-patient support related enquiries 

– TO BOOK – 

Call 0117 370 1311 

or e-mail jay@pituitary.org.uk 

Registered Charity No 1058968 

individual patients can vary and specific advice from your medical 

Pituitary Masquerade Ball A5 Invite PRINT.indd 1 02/03/2016 13:11 

advisors should always be sought. We do not endorse any companies 

Find us on 

Facebook 

Membership enquiries 

If you have an enquiry specifically relating to 

membership please contact 

membership@pituitary.org.uk 

or main switchboard 0117 370 1333. 

Fundraising enquiries 

If your enquiry relates to raising funds please contact 

fundraising@pituitary.org.uk or main switchboard 

0117 370 1333. 

The views expressed by the contributors are not necessarily those 

of The Pituitary Foundation. All information given is general - 

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 

Working to support pituitary patients

Issue 34

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