Issue 30

Summer 2015 edition 

Issue No: 30 

£5.00 inc P&P for non-members 

Visual impact of 

pituitary tumours 

Launch 

of our 

Patient 

Folder 

New medicine 

for acromegaly 

Hydrocortisone 

refusal letter 

New booklet: 

Living with DI 

for young adults 

& teens 

The possible 

psychosocial 

aspects 

of getting 

older with a 

pituitary 

condition 

Pituitary life | autumn 2012 

www.pituitary.org.uk

2 

news News 

Making progress 

contents 

Last year was a fantastic year for the 

charity in many ways and we have 

recently published a new Annual 

Review document highlighting our 

achievements during 2013/14. We saw 

increasing demand for our services, 

more patients supported, and a 

record breaking record-breaking year 

in fundraising, increasing volunteer 

numbers and growth across the 

organisation generally. 

We are proud to say that last year, 

of every £1 spent, 85p went towards 

supporting patients and our Local Support 

Groups’ work in their communities. We’ve 

made amazing progress over the past 12 

months, but there is so much more to do to 

improve awareness and support for patients 

and their families. We will now continue to 

build on our current achievements and drive 

forward our aims of improving awareness, 

educating healthcare professionals and 

providing support and information to 

anyone affected by pituitary conditions. 

Please do read a copy of the Annual 

Review online, or order a printed copy, so 

you can see how the money and support 

you contribute to The Foundation is used 

effectively. A copy can be downloaded 

on our website (www.pituitary.org. 

uk/about-us/charity-information) or 

News 2-9 

Local Support Group news 7 

Professional articles 10-11 

& 21-26 

Raising awareness 13-20 

Wall of thanks 16-17 

Patients’ stories 27-31 

ordered by emailing enquiries@pituitary. 

org.uk 

Thank you sincerely for continuing 

your membership – every member really 

does count. We need and appreciate your 

help to continue progressing our work to 

improve the lives of pituitary patients and 

their families ■ 

Menai Owen-Jones 

Chief Executive 

Jenny West 

Chair of Trustees 

New! Pituitary Patient Folder 

Have you got our resources you 

want to store safely in one place? 

Or, have you got appointment 

letters, test results and our Emergency 

Cards in various envelopes, or wedged 

behind the toaster? We have a solution 

– our new Pituitary Patient Folder, 

with our printed card on the front. 

The folder has 20 clear plastic inserts 

to easily file all of your pituitary 

paperwork. It is a convenient A4 size 

to store at home and carry with you to 

endocrine appointments; it will help 

you find quickly any information you 

might need during your appointments. 

It will also be invaluable if an 

emergency arises – just pick up and take 

with you to inform those looking after 

you. We are able to offer these folders 

(in a choice of purple, orange or green 

colours) at a reduced price of £2.00 each 

including packing and postage. To order 

your folder, please send a cheque for 

£2.00 to The Pituitary Foundation, 86 

Colston Street, Bristol BS1 5BB, and 

marking your envelope ‘Patient Folder’ 

with a note inside of your preferred 

colour. Cheques must be made payable to 

“The Pituitary Foundation” Alternatively, 

you can order through our website shop ■ 

Pituitary Life | summer 2015

news News - Awareness Month 

3 

Awareness Month October 2015 

Together, we can make this the best Awareness Month on record! Please have a 

look and see which of the below activities you can help with, large or small - it 

will make a massive difference! 

This October, the main theme of this Awareness Month will be the launch of 

the Get Red Flagged Campaign. This campaign is all about encouraging patients 

with adrenal insufficiency to register with their local Ambulance Trust. Once 

a patient is red flagged on the Trust’s system, if they were to ever call 999, the 

call will be flagged for priority attendance to their home address by a vehicle 

carrying emergency hydrocortisone. Adrenal crisis is life threatening and 

getting red flagged is an important safety precaution. 

It would be brilliant news for pituitary awareness if we could increase the 

numbers of people getting involved again; 2014 saw a sensational 63% rise from 

2013, which will be hard to beat, but we love a challenge! ■ 

How to get involved 

Red flags, with our logo on, will be 

printed and sent out as reminders 

to support groups and clinics. We 

want the pituitary community to be 

bombarded by red flags and pictures 

of supporters wearing red during 

October, we want to make sure everyone 

takes notice of this important message. 

This is an awareness campaign and the most important way you 

can get involved is to get yourself red flagged during October, 

through using the information provided by The Foundation. Just 

get in touch and we will send you an information factsheet about 

what to do. Secondly, you can take a flag and resources to an 

endocrine clinic to help with Get Red Flagged awareness. The 

Foundation will be sending resources to all pituitary Centres of 

Excellence too. 

For any queries about getting involved with our Get 

Red Flagged awareness campaign please contact Rosa, our 

Volunteers, Campaigns & Projects Manager on 0117 370 1316. 

The campaign will begin in the autumn, so please remember 

if you register to get 

involved now, you 

will be sent your 

resources in early 

September, ready 

for October ■ 

To raise awareness and 

funds in line with 

the Get Red Flagged 

campaign supporters are 

planning Go Red Days 

across the UK. 

This can involve anything 

from asking your company 

to allow a Go Red Day at work, to organising a Red Day 

coffee morning. It’s easy - all that’s involved is something red! 

This could be wearing a red shirt, T-shirt, tie or socks! For the 

more daring, you may even want to dye your hair red or have 

your face painted. An easy way to raise money is to charge a 

small fee to those wearing red, and you could even bake rediced 

cakes to sell. Once you have decided on what you want 

to do, please get in touch and we’ll send out your red flags to 

help you celebrate going red in style. For help 

planning your Go Red event contact Jay 

our Fundraising & Marketing Manager 

on 0117 370 1314 ■ 

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. (Remember to 

get permission from the venue you are going to use and speak to 

us for help in planning your stand.) ■ 


4 News - Awareness Month 

If you are unable to get involved with Awareness 

Month, 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 issue of Pituitary Life. Last year, thanks to your 

generosity, we managed to raise an amazing total of 

£2568.58 which made our awareness work possible. 

Please can you help us again? ■ 

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. These materials include 

PowerPoint slides and notes to read from to make it easier. 

Let us know if you’re interested ■ 

Summer Raffle 

Thank you to everyone who has bought raffle tickets so 

far. We have raised a fantastic £2800, an increase of 

122% on this time last year! Thanks to the collective 

efforts of supporters like you, last year’s Summer Raffle 

raised £3014. We’re hoping that with your help we will 

be able to make this year’s Summer Raffle even more 

successful than the last. With the closing date on the 26th 

June, this is your last chance to request raffle tickets. Please 

get in touch with jay@pituitary.org.uk to order your book 

of 10 tickets today so you’re in with a chance of winning 

one of our fantastic prizes and helping us continue to 

support pituitary patients and their families in the process. 

As a small charity, all the money we raise plays a vital role in 

allowing us to be there for people with pituitary conditions, their 

friends and family: 85p of every £1 donated to the charity is spent 

on providing support for people affected by pituitary conditions. 

This year’s fantastic Summer Raffle prizes are: 

1st Prize: A luxury city break in Cardiff in the Mercure 

Holland House Hotel and Spa, staying in the Presidential Suite, 

including treatments at the hotel and dinner 

2nd Prize: Apple iPad 

3rd Prize: £50 cash ■ 

Request your resources 

Let us know which activity you are getting involved 

in and we will send you the resources you will need. 

To do this, just fill in the relevant section of the 

Awareness Month insert with this magazine and post 

to us. Alternatively, contact our Assistant Administrator, 

Emily Graham, at emily@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! 

If you would like to take part in an activity that is not 

listed above, just let us know as we can still support you 

in planning this. The more activity during October the 

better! 

Please note that all resources will not be posted out 

until early September ■ 


News 

5 

Thank you to all volunteers 

We appreciate the amazing work of our volunteers all year round, however, 

National Volunteers’ Week is an excellent opportunity to say an EXTRA BIG 

thank you! Volunteers’ Week is an annual celebration about the contribution 

volunteers make across the UK. 

Over the past year, The Pituitary Foundation would never have achieved as much as we have 

done without our volunteers’ help. The past year has seen many volunteer highlights including; 

reaching a total of 110 volunteers, volunteer Helpline cover rising to over 50%, increased local 

support group cover, and the increase in volunteers getting involved in Awareness Month 

activities. The staff were delighted to see from feedback this spring that 92.5% of our volunteers 

would ‘recommend others to volunteer’. 

With our thanks and appreciation for your outstanding commitment, from all the staff at The 

Pituitary Foundation ■ 

To celebrate Volunteers’ Week we 

have asked one of our youngest 

volunteers, Laura, for her story. 

A huge thank you to Laura for her 

amazing contributions since joining us. 

My name is Laura Duffield and I’m 

23 years old. I am a pituitary patient 

and the Volunteer Area Coordinator for 

the Sheffield Pituitary Support Group. I 

currently work full-time as an accounts 

assistant for a national coffee shop chain. 

I was only three years old when I was 

diagnosed with a pituitary condition. 

Apparently, I didn’t act like a ‘normal’ child 

- I would play for a while then just want to 

go to sleep. I used to cover my eyes when 

exposed to bright light and, as my condition 

deteriorated further, I couldn’t eat anything 

without being sick. My concerned parents 

persisted with taking me to the doctors 

but were made to feel as though they were 

being unduly overprotective and paranoid. 

They kept being sent away by the doctor 

and told that it was nothing more than the 

‘terrible twos’. 

Back in the 1990s, every child in the 

Rotherham area had a routine check-up at 

the age of three. Fortunately, this picked 

up that something wasn’t quite right with 

my eyesight, but despite trying glasses, 

there was no improvement. It was only 

when an ophthalmologist investigated 

further and sent me for an MRI scan 

that the tumour was detected and I was 

diagnosed with a craniopharyngioma. 

Within two weeks of diagnosis (April 

1995), I had surgery to remove the tumour 

and my pituitary gland. Unfortunately, by 

the time I was operated on, the tumour 

had become entangled with my optic 

nerve, resulting in permanent damage 

to my eyesight. I have been left with no 

vision in my left eye and only have partial 

sight in my right. 

Despite having to learn to walk and 

talk again after the operation, I managed 

well at primary school. I was nominated 

and selected for a Child of Achievement 

Award, going to London to collect this 

and meeting various celebrities. Secondary 

school was tough, due to ongoing illness 

and regular hospital visits but against all 

the odds, I did really well in my GCSEs 

and A Levels. 

I currently take various medication, 

including replacement hormones 

(hydrocortisone, thyroxine etc.) and 

desmopressin for diabetes insipidus. I 

also carry an Efcortesol injection with me 

for use in an emergency, should I suffer 

an Addisonian crisis. I received regular 

growth hormone injections and without 

them, I don’t think I would have grown to 

be 5 feet 3 inches! I had to stop the growth 

hormone injections as a precaution in 

2011, when I received the devastating 

news that I’d developed a liver tumour. 

I had to have an operation to remove 

the tumour, losing 75% of my liver, but 

fortunately it has since regenerated to 

its normal size. As a teenager, I also 

used to take Loestrin, but as with the 

growth hormone, this medication 

was withdrawn as a precaution 

following my liver tumour. 

I didn’t find out about The Pituitary 

Foundation until a few years ago and 

only wish I’d found out sooner. The 

information and support that’s available 

is invaluable. About a year ago, I found 

out that the Sheffield Support Group was 

close to folding, so I decided to rise to the 

challenge and take it over - it’s the best 

thing I’ve ever done! I feel as though I’m 

helping people with similar conditions 

and was surprised to learn just how many 

other pituitary patients there are in South 

Yorkshire! 

Last October, I held a fundraising event 

in aid of The Pituitary Foundation, raising 

£850 and I’m already planning another 

one this year! Out of running the support 

group I have met a boyfriend, who is now 

a big part of my life! I am very grateful 

for all the support my 

family and friends 

have given me 

over the years, 

especially my 

mum, who 

means the 

world to 

me! ■ 


6 news 

Donna’s tattoo 

It started three years ago, aged 30. 

I now know I hadn’t felt well for a 

long time. It was August and my 

husband and I took our three boys, 

who were age 11 and twins age seven, 

on a two week camping trip where we 

had so much fun. But I remember one 

night I had a very intense headache - 

much worse than normal (I did often 

suffer with headaches) but I soldiered 

on as us mums do, determined I 

wasn’t going to wreck our holiday. 

CT scan 

On our return I still had a headache and I 

felt unwell, weak, even a bit disorientated 

but I put it down to having three very 

active, lively boys to look after and thought 

it would settle when they were back to 

school. They went back to school and I 

realised I just couldn’t face going to work 

(as a teaching assistant at a pre-school). 

The following day, I had no strength and 

even dropped four pints of milk all over 

the floor; my mum then made me phone 

the doctors and get an appointment. I went 

that day and the locum doctor insisted I 

was stressed and depressed, putting me 

on antidepressants, but the following day 

my mum was unhappy with the diagnosis 

and insisted I made an appointment with 

my regular doctor. He was very thorough 

and agreed it was not depression but felt 

because of my weakness, headache and 

some vision loss, a CT scan would be a 

good place to start and he even bet me a 

pound that it would be fine but he needed 

to rule a neurological cause out. Within 

an hour he phoned me and said to go to 

my local hospital straight away as he had 

got me an appointment for the same day. I 

still didn’t panic, but I could see my mum 

was and she called my husband at work 

who met us there. 

life changing 

Wow, then my life changed forever!!! We 

sat for two hours after the scan waiting 

for someone to give me the all clear (so 

I thought), but when we were called back 

in, I was told that the scan had shown a 

growth and some abnormalities, but they 

didn’t treat neuro so they referred my 

scans to Derriford hospital which was a 

168 miles round-trip away. We were told 

we would hear from them within a week. 

We went home shocked and with so many 

questions!! A growth – where? Cancer? 

Abnormalities!!! 

pituitary tumour 

It was two weeks before we heard 

anything - and that was with my husband 

chasing, trying to find out who was 

looking at the scans and who was going 

to look after me. Finally, two months after 

my CT, it was made clear to me that I had 

a pituitary tumour, which had bled and 

five very strange shaped brain aneurisms. 

The struggle didn’t stop then because 

the local hospital was so far behind with 

appointments to see an endocrinologist, 

it was a three month waiting list, so I 

went private and paid. This appointment 

led to me being seen in Derriford within 

six weeks and undergoing all the tests. 

Meanwhile, I was meeting with various 

neurosurgeons to talk through my options, 

which at that point, was very bleak due to 

the size and shapes of the aneurisms. 

endocrine tests 

Each endocrine test lead to more 

medication - the stress was unbearable. I 

was told of the importance of a medical 

ID bracelet and how it could potentially 

save my life. My parents bought my first 

one at the cost of £50 which was so nice, 

however, it broke and over the next 12 

months I went through five bracelets. It 

was also the fact of remembering to put it 

on and this caused stress when you were 

out and realised you didn’t have it on. It 

lead to a conversation one evening with 

my mum and husband, who suggested 

having it tattooed on; I wasn’t so keen 

to start with, but having looked on the 

Internet, I changed my mind and decided 

it would always be there and it was one 

thing I didn’t have to think or stress about 

anymore. So I went and had it done and 

I’m so pleased I did, it makes me feel safer 

and it’s a talking point too. My mum (who 

has sadly passed away 18 months ago 

from an unknown brain aneurism) and 

my husband were right. I’ve undergone 

18 operations and a craniotomy in three 

years; they have managed to make safe 

my aneurisms, for now, but because it has 

entailed a lot of operations (with doctors 

coming from Milan to treat them), I still 

have my tumour!!! 

side effects 

I take lots of medications and have lots of 

side effects!! In fact I’m a totally different 

person to who I was, but I’m alive. I 

would like to say a massive thanks to The 

Pituitary Foundation for their support 

and the massive amount of information 

online and in the support groups, which 

you don’t get told ■ 

Pituitary life | summer 2015

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 32 Support Groups 

meet near you, please see our 

website, contact Rosa Watkin 

on 0117 370 1316, or email 

helpline@pituitary.org.uk 

Central and North West Lancs 

Sadly we have said goodbye to the Area 

Co-ordinator Kath McGahran after 

many years of running the group. Kath 

did a fantastic job and The Foundation 

would like to say a huge thank you for 

all the time and hard work she put 

into the group. The new joint Area 

Co-ordinator, Ron Cross, will now 

run the group with Phil Buckley who 

is continuing as AC. Nick Melling will 

be helping to organise events for the 

group also. The group will continue 

to meet every two months with formal 

meetings and meals out. They are always 

happy to welcome new members. The 

group will next meet on 4 July and 12 

September 2015. 

Leeds 

The Leeds Group meet on the first 

Saturday of every month (with the 

exception of August when there is 

no meeting) in The West Yorkshire 

Playhouse restaurant with a 10.30am 

start. There will be a sign against one 

of the bay windows so you can easily 

spot them if you are joining them for 

the first time. The group is always 

happy to welcome new members and 

you can find the contact details for 

Sally Robertson, Area Co-ordinator, on 

our website or by ringing our Helpline. 

Recently, the group has enjoyed some 

really fascinating meetings with the 

recent AGM in April, including a 

presentation by Dr Robert Murray, 

Consultant Endocrinologist and his 

team in Leeds about ‘Advances in the 

treatment of pituitary tumours’. 

Aberdeen 

We are sadly saying goodbye to Jennifer 

Gibson who has had to stand down 

as Aberdeen’s Area Co-ordinator; we 

would like to say a special thank you 

for everything she did for the group. 

Alison Milne, our Endocrine Nurse, 

has kindly offered to run the group in 

her spare time as a temporary measure 

until another Area Co-ordinator can 

take over. Alison can organise two or 

three meetings a year. The next date set 

is 22 August for a social walk, details 

TBC. They are urgently looking for 

a new co-ordinator and if anyone is 

interested or would like to know more 

about the role, please contact Rosa 

Watkin on 0117 370 1316, or email 

rosa@pituitary.org.uk (Rosa is also 

dealing with general group enquiries 

until a new co-ordinator is found.) 

Ipswich and Suffolk 

The Ipswich and Suffolk Group have 

regular meetings in Ipswich Hospital 

where they share experiences of 

pituitary conditions; a member also 

attends each pituitary clinic to be there 

to offer support to new patients. In 

the groups’ recent meetings they 

have enjoyed a talk by Jo Pooley, 

a paramedic with the Suffolk 

Ambulance Service, and held an 

informal coffee morning. The group 

is next meeting on 27 July, where Dr 

Gerry Rayman, head of the Diabetes 

& Endocrine Department at Ipswich 

Hospital, will be speaking. Dr Rayman 

was the instigator of the group along 

with Marion Lanyon, the Endocrine 

Specialist Nurse. Dr Rayman is giving 

up his endocrine clinics to concentrate 

on diabetes and his presentations 

which he does worldwide; so this talk 

is to say ‘Goodbye’. For group details, 

email pitips@btinternet.com or ring 

our Helpline. 

London 

London Support Group meetings 

are held four times a year and have a 

specialist speaker at most meetings. At 

the last meeting, the group enjoyed a 

talk from Professor Marta Korbonits 

on ‘Functioning Tumours’, the type 

of tumour that causes the pituitary to 

overproduce growth hormone, cortisol 

and prolactin. The Professor talked 

about all aspects of these conditions 

and the treatments available with an 

opportunity to ask questions. The 

next meetings will be on Saturday 

26 September for the annual group 

social meeting, then on 11 December 

at Hammersmith Hospital. The social, 

just for members, will be a Regent’s 

Canal trip from Camden Lock to 

Little Venice and back again through 

Regent’s Park, London Zoo and other 

sights (booking is essential). 

Contact details for our Support 

Groups are on our website or just 

call our Helpline ■ 


8 news 

A patient’s view of their annual review 

Your annual appointment 

arrives in the post; in fact two 

appointment letters are in the 

same envelope – the original date was 

cancelled (which you never received 

anyway) and a new date given for a 

week’s time. 

You set off from home at 9.00am to 

arrive in good time and find parking. 

Three car parks are full, so you drive 

around for 20 frustrating minutes, hoping 

for a space. A quick sprint along corridors, 

and flight of stairs to reach the clinic. A 

receptionist is checking patients in at the 

desk, asking each patient to repeat their 

phone number, GP and date of birth – 

often asked to be repeated more loudly, in 

full hearing of other patients! 

The clinic 

The walls are bare, except for the odd 

poster advertising various diseases and 

white boards with illegible doctors’ names 

scribbled on…some paintings or local 

photos would be nice to look at. The 

seating area (probably as in most clinics) 

with very hard plastic chairs, faces on 

to a general thoroughfare, with patients 

parading backwards and forwards, 

searching for their various clinics. It’s 

a clean and tidy area, but stark. Not a 

Pituitary Foundation poster in sight! 

One nurse is weighing patients in turn 

and three others are ‘busily’ walking in 

and out of consulting rooms with files, 

their comfortable shoes making that 

‘squishing’ noise. The clinic nurses don’t 

talk to the waiting group of people, only 

as we are checked in and maybe exchange 

the odd word at our weigh-in. 

After a half hour wait, you are told that 

there will be a delay of one hour today 

and that we could go and get a cup of tea! 

Not many do though, in case they miss 

their turn. This delay will be a regular 

occurrence found in other medical clinics 

and it’s appreciated that sometimes it 

simply cannot be helped. However, these 

delays can mean patients then also run late 

on things they have to do too. The waiting 

room fills up; it can appear that patients 

who arrive sometime after you, are seen 

earlier than you. Staff from other clinics 

nearby stop for a chat with your clinic 

staff about their social activities. The 

waiting patients keep looking to check 

if consulting room doors are opening, in 

between the distraction of each patient 

being called to be weighed. A trip to the 

water dispenser is a treat, to stretch your 

legs at least! After sitting for one hour 

and four minutes, your name is called. 

The consultation 

An ‘absorbed on several things at once’ 

consultant greets you; their computer is 

also playing up. Consultant asks how you 

are. “I’m fine thank you” - your usual 

‘annual response’. Your file is open; you 

are asked what you are taking (the same 

question asked every year) – you reel your 

replacement hormones and doses off, as 

consultant writes them on the sheet. Have 

you ever wondered why patients are asked 

this question every visit; is it because the 

consultant needs to know that we patients 


news 

9 

know what we are taking…? 

You are almost done (with 

unmistakeable relief from the consultant, 

as you are one of those ‘feels-very-wellno-problems-patient’). 

You’ll both be 

mindful that there are other patients 

with very numb backsides in the waiting 

room that may well not feel fine. Your 

consultant asks when your last scan was. 

Apparently, the hospital has transferred 

all old paper records to electronic, but 

only for the past several years, so a wealth 

of your early pituitary history doesn’t 

appear to exist. You manage between you 

to conclude the outcome of your surgery 

and your last scan date. 

The mere mention of having an MRI 

scan; you shudder inside! You will clearly 

recall the scans you have had. No MRI 

you’ve had has been up there on your 

‘joyous experiences’ list. Do you ever 

wonder if your consultant knows just what 

an MRI is like to have? Can they imagine 

climbing beneath the floorboards at home 

to look for a leaking pipe?’ Maybe not, but 

bear with me. ‘You are under the floor, in 

this tiny space, with the floorboards right 

above your face. Now imagine trying to 

turn and you get stuck; wedged hard and 

cannot move! Are you now claustrophobic 

and your panic rising? And then being 

pulled out, contrast dye injected into your 

vein and pushed back in; within minutes 

you’ll have a divine metallic taste in your 

mouth and it will feel as though you have 

wet yourself? That is what having an MRI 

scan can feel like. 

The other thing about an MRI that 

can cause terror is ‘can the radiologist see 

something amiss in your pituitary - or in 

your entire brain for that matter’? You get 

off the scan table and go off home, none 

the wiser but worrying at what might have 

shown up – re-growth or other ‘brain 

findings’ can be a frightening scenario for 

most. If the phone were to ring once you 

are home, you almost jump out of your 

skin in case it’s about your MRI…! 

Editor Note: Not all patients 

share this view. One patient says that 

she doesn’t find an MRI scary or 

unpleasant and meditates whilst lying 

there. We understand that headphones 

are being offered these days and of 

course sedation is available for those 

who are claustrophobic. What has your 

MRI experience been like? Let me know, 

by emailing pat@pituitary.org.uk and 

I’ll publish your experiences. 

The aftermath 

Your consultation takes nine minutes; 

you say farewell for another 12 months 

and take a ticket to sit in the queue 

at phlebotomy for your blood tests. 

Phlebotomy is often busy, so another wait, 

on another hard seat. Number 60 is called 

(you are now a number); unfortunately, 

the vein in your left arm won’t behave, so 

you come away with both arms plastered, 

bruised and sore. You then walk (quite 

drained) several hundred yards back to the 

car park, pay your extortionate parking 

fee and reach home three and a half hours 

after you left the house. 

You may feel quite emotionally 

exhausted after your appointment. There 

could be still some uneasiness, visiting 

the site of your early treatment and tests. 

You will still remember clearly that day of 

your diagnosis and being told “You have a 

tumour!” and the quite invasive tests you 

went through. You might have felt really 

quite ill too. The fear of having surgery, 

post-op time and slow recovery, plus 

starting to take daily hormones, might 

have all left their mark. 

You feel it’s important to know what 

your current blood tests results are, but 

these are kept in your file and may only 

be sent to your GP after some weeks. You 

won’t wish to take your GP’s time up, just 

for your results, so you wait until next 

year’s appointment to hear about them 

then. But, unless you ask, your results 

mightn’t be mentioned. 

Annual monitoring is of course necessary 

and helpful to have your hormone levels 

checked, and discuss your condition and 

treatments, but the patient’s experience 

of coming to clinic can be quite different 

to what the consultant, their team and 

clinic staff see and believe it to be, as they 

routinely carry out their roles with patients 

visiting clinic - week in, week out ■ 


10 Professional articles 

The visual impact of pituitary tumours 

By Dr Denize Atan, Consultant in Neuro-ophthalmology, Bristol Eye Hospital 

The pituitary gland is an important 

gland which sits in the middle of 

our brain. It is responsible for 

making a number of hormones that 

regulate our metabolic rate, responses 

to stress, growth, fertility, menstrual 

cycle and pregnancy hormones, and 

intake/output of fluids. 

The most common problem which 

affects the pituitary gland is a benign 

growth of the gland, also known as an 

adenoma. Pituitary adenomas either 

produce excessive amounts of pituitary 

hormones themselves, or the growth 

actually interferes with the production of 

pituitary hormones. Our bodies normally 

control the levels of these hormones very 

precisely, and too high or low levels lead 

to ill health. They do not have any direct 

influence on our vision. Why then do 

problems with the pituitary gland affect 

our vision? 

The reason is simply this: pituitary 

adenomas can affect our vision because of 

where they are positioned in the brain, not 

because of what they are, or the hormones 

they produce. 

When a pituitary adenoma reaches 

a certain size (>1cm) it is known as a 

macroadenoma and it can start to interfere 

with the function of the structures around 

it. To understand why this is, it is important 

to know a little about the anatomy of the 

pituitary gland and what lies close to it in 

the brain. In other words, growth of the 

pituitary gland affects our vision indirectly, 

by exerting pressure on the structures that 

surround it. A normal pituitary gland, or 

a microadenoma (

news Professional articles 

11 

Figure 2: Patterns of visual impairment caused by a pituitary macroadenoma 

Adapted from: http://commons.wikimedia.org/wiki/File:1420_Optical_Fields.jpg 

the information it would normally 

transmit to the brain via the optic nerve 

cannot get through. 

What other visual problems 

may be caused by a pituitary 

macroadenoma? 

As mentioned earlier, normal vision 

also depends on your eye muscles pulling 

both eyes in the right direction to look at 

things simultaneously. If your eyes do 

not point in exactly in the same direction, 

you might see two images instead of 

one. This can be very disorientating and 

confusing. The reason that a pituitary 

macroadenoma can cause double vision 

is that the nerves connecting your eye 

muscles to your brain are also positioned 

very close to the pituitary gland. There are 

three nerves that control eye movements, 

called the oculomotor, trochlear and 

abducent nerves. They are also known as 

the third, fourth and sixth cranial nerves. 

If any one of these nerves is affected by 

a pituitary macroadenoma, it can result in 

double vision (Figure 1). 

Why is it important to look for 

visual problems caused by a 

pituitary macroadenoma? 

As mentioned earlier, many people may 

not be aware of a problem with their 

peripheral vision before it becomes quite 

advanced and so it is important that you 

are screened for any visual problems 

resulting from a pituitary macroadenoma. 

In addition, some or all of this visual 

impairment can be reversed with treatment 

of the pituitary macroadenoma – whether 

this is medication, surgery or radiotherapy 

to shrink the size of the adenoma. As 

the adenoma gets smaller, the pressure it 

exerts on surrounding structures, including 

the visual circuitry, is relieved, leading to 

an improvement in vision. Left untreated, 

some of this visual impairment may 

become permanent. This can sometimes 

affect your ability to drive ■ 

The possible psychosocial aspects of 

getting older with a pituitary condition 

By Dr Sue Jackson 

When we talk about “getting 

older”, who are we referring 

to? Gerontologists group 

older adults into three sub-groups; 

the young old (aged 60-75), the old old 

(aged 75 to 85), and the oldest old (aged 

85 and over). In terms of pituitary 

conditions, our knowledge about the 

psychosocial aspects of the various 

conditions as they relate to adults 

is patchy at best. The kind of data 

charting the psychosocial issues for 

all the conditions across the lifespan 

seems to be largely missing. So what 

to do? There are very many beliefs and 

ideas about ageing, so in this article 

I plan to review the commonest ones 

and look at what we might therefore 

infer about what getting older might 

mean for individuals with a pituitary 

condition. 

It seems to me that there are currently 

two almost opposite ways of thinking 

about ageing – one view is quite negative 

(older age is a miserable time that comes 

with poorer health, reduced mobility, 

reduced brain power, invisibility, social 



isolation, stigma and discrimination), the 

other is more positive (older adulthood is a 

time of continuing health and enthusiasm 

for living). For the scores of articles about 

how age is a state of mind, and how 50 

is the new 40, there are a similar number 

of articles from people whose experience 

of ageing is arguably far less positive. So 

what’s going on? Well, the main message 

about normal ageing from recent research 

seems to suggest that there is a great deal 

of individual difference in the experience 

of this time of life, meaning the range of 

experiences of ageing is potentially vast. 

If this hold true for individuals with a 

pituitary condition then it seems some 

will age well, while some others are likely 

to experience difficulties. 

Will it be miserable? 

Recent research on mood, tends to 

suggest that as a nation the trend is for our 

later years to be more positive, with fewer 

arguments and less worries. But is that 

true for people with pituitary conditions? 

Data from the Needs Analysis undertaken 

for the Pituitary Foundation in 2006 

(this report is still available to download 

from the Pituitary Foundation website) 

suggested that those in the 61+ age group 

were significantly less anxious than those 

in their middle age (41-60), they also 

reported significantly better quality of life 

than those in the other age groups and 

had significantly less social anxiety than 

the other age groups. Of course, you’ll 

have already spotted that the data from 

the older adults was analysed together, 

rather than being explored in relation 

to the three sub-groups of older adults 

identified at the beginning of this article, 

so the real data on the different age 

groups is missing. 

Will I have poorer health? 

A pituitary condition is a chronic 

condition, and the Department for Health 

(DoH) Chronic Disease Management 

Compendium of Information from May 

2004 says that 60% of adults in England 

report a chronic health problem. They 

report data from the United States which 

says that 45% of those with a chronic 

disease are likely to have more than one 

Pituitary life | summer 2015 

chronic condition, but for those over the 

age of 65 this rises to nearly 70%. These 

data would tend to suggest that some 

individuals with a pituitary condition may 

well develop additional co-morbidities, 

but as far as I’m aware, the data on 

pituitary patients and their development 

of co-morbidities as older adults has yet 

to be investigated and reported. 

Will I have problems getting 

around? 

The DoH report identifies a number 

of common problems living with comorbidities 

can raise for the individuals 

concerned: 

• Difficulties with activities of daily 

living 

• Complicated medical regimens that 

may require contact with specialist 

services and multiple trips to hospital 

• Isolation from family and friends 

• Development of further comorbidities 

(such as depression) that 

can be missed 

• Development of problems from the 

side-effects of treatments. 

Their report provides a graph 

which illustrates a gradual increase 

in the percentage of the population 

experiencing limitations on their life, with 

a reduced ability to undertake activities 

of daily living. So, of the group of 

individuals in the nation who only have 

one chronic condition, 15% of them 

will experience problems in being able 

to perform activities of daily living. This 

rises to 42% of the population living with 

three co-morbidities, and when you get to 

those living with five or more, 67% of the 

population report problems. 

Will I develop cognitive 

problems? 

Recent research has suggested that the 

predictions on the rate of development 

of Alzheimer’s disease and vascular 

dementias were wrong, and that with an 

increase in control of the risk factors 

associated with developing dementia (i.e. 

weight, blood pressure, and cholesterol) 

the percentage of the population likely to 

develop such problems have been revised 

downward. In terms of memory function, 

Denise Boyd & Helen Bee in their 2014 

book “Lifespan Development” report 

that, generally speaking, the youngest old 

(aged 65-75) tend to retain the same kind 

of memory function that they’ve always 

had, while the old old (aged 75 to 85) and 

the oldest old (aged 85 and over) show 

some declines in memory function as well 

as a slowing in the speed at which they 

can remember things, and do unusual, or 

unfamiliar, memory tasks. 

Will I become invisible and 

irrelevant? 

In 2011, the results of a survey by the 

Nominet Trust reported in the Daily 

Mail suggested that more than half of 

individuals aged 65+ feel ignored. The 

issues raised covered such aspects as the 

lack of relevant TV and radio programmes; 

older (particularly female) individuals 

being less obvious in the media, and a lack 

of relevant information for older people 

on the Internet (this, despite the large 

number of “silver surfers”). People over 

50 struggle to find employment, and often 

report feeling that the experience they 

could bring to the workplace is not sought 

or valued by employers. The Patient 

Satisfaction Survey undertaken for the 

Pituitary Foundation in 2008 (this report 

is still available to download from the 

Pituitary Foundation website), reported 

that two-thirds of respondents who were 

in employment felt supported by their 

employer, however, this report provided 

no breakdown of the information by age 

group so is only indicative of a general 

trend. 

Will I be alone? 

Back in the 1960’s a couple of social 

scientists (Elaine Cumming & Warren 

Earl Henry) suggested that ageing 

was associated with what they called 

“disengagement”. They reasoned that 

as older adults witnessed their friends 

passing away, they tended to disengage 

from life in preparation for their own 

impending death. Their theory has since 

been discredited largely due to a lack 

of empirical evidence to support it, but 

continued on page 21

Raising awareness 

special 

8 page 

13 

this section can be pulled out - lift out centre 8 pages from stapled spine 

We have continued to be thrilled by the incredible support of all our wonderful 

fundraisers and everyone who has donated. We have seen some amazing 

fundraising achievements this last few months and you only need to look at 

our wall of thanks to see some of the people who have supported us by hosting events, 

running, organising quizzes, baking, bag-packing…the list could go on! We’re very happy to 

write that this financial year we look on track to raise £500,000! This would be the most raised 

in The Pituitary Foundation’s 20 year history! We could not have come close to achieving this goal 

without the support of our members and supporters. With your help in the next few weeks, we could achieve this 

goal! If you’d be able to donate or fundraise for us, please get in touch as we would love to hear from you. It would 

be a massive achievement for a small charity like us to raise half a million pounds and it’s an accomplishment 

we’d absolutely love to see happen. With your support, in the next Pituitary Life we hope to 

able to say that we’ve achieved this milestone. This would help us lay a firm foundation for a 

future where we continue to help pituitary patients and their families ■ 

Save our Loos campaign 

We are looking for members to get involved in the 

Save Our Loos campaign, which was launched 

at the beginning of June. Councils are currently 

shutting down public toilets across the UK and from 

speaking with patients who have diabetes insipidus (DI), 

we know this is having a real impact on their daily lives. 

One in seven public toilets has already been closed by 

council cuts. In 11 council areas, including some large 

cities, there are no public toilet facilities anywhere. A 

Welsh government report recognises the lack of public 

facilities can cause isolation, distress, and affects people’s 

independence and quality of life. Disability and elderly 

care charities have also supported this opinion, but many 

closures are still imminent. 

Please see the campaigns section on our website today to find 

out more about the ways you can get involved with this important 

campaign. We need participants to write to 

their councillor if there is a public toilet, 

local to them, facing closure 

(template letters and 

information on closures 

are available). This 

is also an awareness 

campaign to support 

DI patients, so we will 

be publicising useful 

resources on the website 

throughout the campaign 

such as the National Key 

Scheme, the Find Toilets app, 

The Great British Public Toilet 

Map, our free DI toilet cards, and 

other useful information ■ 

pull-out 

section 

Events record income 

Due to all our fundraisers’ support, we have raised a 

record amount of money from events! We have raised 

over £100,000 from events for the first time ever. 

While we celebrate the fundraisers who have raised huge 

amounts of money for us, such as our “Team Pituitary” 

London Marathon runners who raised a staggering 

£45,000 between them, everyone’s contributions – whether 

from a cake sale, skydiving or a dress down day - have gone 

towards achieving this fantastic amount. We are always 

extremely thankful when we receive a donation, but seeing 

this total amount representing the cumulative efforts of 

all our fundraisers is staggering. As the demand for our 

services continues to grow, we are enormously thankful to 

every one of our fundraisers’ time, energy and commitment 

to taking part in events for us ■ 


14 Raising awareness 

Ain’t no mountain high enough... 

Jemma’s journey 

Far beyond my wildest dreams did I ever think I’d be 

saying this…..but I’ve just conquered the summit of 

Mount Kilimanjaro – “So happy!” 

Diagnosed in 2012 following years of frustration and not 

knowing what was wrong with me, endless sleepless nights, huge 

weight gain, feeling lethargic and depressed to name but a few 

of my symptoms. My diagnosis was a relief, to finally find out 

that there was something wrong with me and that it wasn’t all in 

my head – ironically it turned out it was all in my head! But now 

I knew something could be done about it. It took another 18 

months of testing to eventually get put forward for surgery and 

on 12 August 2013 I had my tumour removed. 

Sitting in the hospital the night before my operation I thought, 

this is it, this is the start of my new life and I thought about this 

quote I had seen – “I want to inspire people, I want someone to 

look at me and say because of you I didn’t give up.” That was 

when I set myself the challenge of climbing Mount Kilimanjaro 

in Tanzania, Africa. 

I discovered The Pituitary Foundation whilst in 

hospital and straight away joined as 

a member. They helped me so much 

with the initial stages which can be 

so daunting when you first come 

out of hospital and have to fend 

for yourself with a new, unfamiliar 

medical condition. It was 

scary, knowing that 



15 

I had to carry an emergency needle around with me and even 

scarier knowing that I might have to use it! They provided me 

with lots of reassurance, information packs and visual aids such 

as the steroid card to carry around with me. I can remember 

endless conversations with Pat, Jay and Alison whether it be via 

email or over the phone. I felt they were always there for me. 

That’s why I decided to set up a fundraiser for The Pituitary 

Foundation. I thought well if I can do this climb I can make 

it more worthwhile for others by raising money to help other 

people in a similar situation to me. So that was it, my just giving 

page – ‘magic happens’ was set up! 

In the end I reached a total of £3322.29 I will never forget the 

generosity of some people. It didn’t matter how much anyone 

donated, it was just the fact that they did and I had people 

donating to me whom I hadn’t seen for some 15 years – it truly 

was amazing! 

hard training 

The next six months took to me training hard ready for the climb. 

Within weeks I could feel myself getting fitter and I started 

seeing results from what I had always strived for but never got. 

This is how it feels I thought……to be at the front for once, 

as I ran through the finish line, leaving a trail of others behind 

me in my cloud of dust! I participated in three tri-athalons that 

year and in September 2014 took on the massive challenge of 

the off road cycle race from London to Brighton. That was by 

far the hardest thing I had ever competed in. 125km, eight and a 

half hours of endurance, blood, sweat and tears, but I got there. 

Even at my lowest moment as it was getting dark, I was so tired 

and cold, I never once thought about giving up. I had to do it. 

The sense of achievement as I came hurtling through the ribbon 

on Brighton beachfront at 8pm at night was exhilarating! 

The strangest thing for me was that in 2014, I did nothing 

different to what I had been doing for about 10 years prior. I 

ate a normal healthy diet and exercised every day. But this time 

it was different. My body had changed and I could now feel the 

benefits of having been cured from Cushing’s disease. I lost 

around three stone in weight, started getting muscles and felt 

generally fit and well. It was a total transformation. 

At 9am on 11 October 2014 I did just that. I even unzipped 

and stood out of my two big warm coats to reveal my orange 

pituitary t-shirt I had been hiding underneath and got that 

picture, punching my arm into the air – I did it! The feeling was 

quite overwhelming but only lasted for minutes because we were 

soon to be rushed back down the mountain to a safer altitude. It’s 

quite weird because there was no cheering or hugging between 

the group as I envisaged shouting ‘we did it, we did it’ In fact 

everyone was quite subdued, not really with it, all the effects of 

the altitude 

Almost running through the gate at the bottom, passing the 

‘congratulations you did it’ sign, saw our porters and guides 

greeting us with the notoriously famous song ‘Jambo Bwana’ 

sung by all on the slopes of the mountain. 

Then for the rest of my African adventure. If I have learnt 

anything from this illness it’s to seize the day, if there is something 

you do not like then change it, if there is something you want to 

do, then do it. Life can be short. 

quit my job 

That’s why I quit my job in the UK and thought once I had 

climbed the mountain I would realise my dream of travelling 

Africa. So after Zanzibar I spent the next five months touring 

Kenya, Uganda and Rwanda, with my highlight being trekking 

the mountain gorillas in the Volcans National Park in Rwanda 

– always been a childhood dream of mine! Then visiting 

Madagsacar, the home to thousands of lemurs. I volunteered 

at a game country lodge for six weeks near Johannesburg where 

I was amongst all the big wild African animals, taking lion cubs 

for walks, feeding the predators, splashing around in a mud pool 

with elephants! Oh it was wonderful! I visited Mozambique and 

swam with whale sharks, I went to the Kruger National Park 

not to mention my final trip over landing from Cape Town all 

the way to Nairobi taking in the wonders of Victoria Falls, the 

deserts of Namibia, beautiful Botswana, amazing Zambia and 

Zimbabwe, stunning Malawi and back up to Tanzania where my 

adventure began. It really was the trip of a lifetime. 

I just have one more thing to mention, one of my most 

treasured times and memories, relevant to me having had 

Cushing’s disease: When I was first diagnosed with Cushing’s 

disease a lady from South Africa contacted me through a 

Facebook ‘Cushing’s patients’ page. Her 12 year old little girl was 

going through the same thing as me and was having an operation 

to remove her brain tumor only a few days after mine. Even 

though we were miles apart, in another country, living different 

lives we were going through the same horrible illness. We kept 

in contact and exchanged advice, comfort and kind words to 

help each other through that time. The little girl’s operation had 

some complications but thank fully she came though it well. The 

lady had said if I was ever in South Africa to look her up…so 

I did. I detoured from Johannesburg on my way to Cape Town 

to Durban where they live and I met Prudence and her little girl 

Chelyn. What a wonderful meeting and I’m so glad I have two 

new friends through something that started as not a very nice 

thing but ended magically! ■ 


16 wall of thanks 

A date with Mr Grey 

– Our thanks to Eleri 

Walters who organised a 

private screening of “50 shades 

of Grey” in her hometown of 

Swansea. As well as the year’s 

must-see movie guests were 

treated to cocktails and a fashion 

show, a staggering £3000 was 

raised in the process!! 

Golf for Issy – This proved to be 

yet another phenomenal day with 76 

golfers turning up for a round of Golf 

at Lansdowne Golf Club. Our sincerest 

thanks to Issy’s grandfather, Garry Park, 

for organising this event. The event 

raised a sensational £2713 which takes 

the Isabella Andrews Appeal fund to a 

monumental £15000. 

PhD Project donation 

- Mr & Mrs Salt donated £125 for 

the PhD project. 

Shakespeare Half 

Marathon – Congratulations 

to Tim Napper who ran the 

Shakespeare Half Marathon in 

support of brother-in-law, Gez 

Thompson. Tim raised a brilliant 

£857.88. Gez ran with Tim but 

saved his fundraising efforts for 

his upcoming Great North Run 

challenge! 

Thanks to our Birmingham Support 

Group who donated £50 to the 

Endocrine Nurse Appeal. 

Well done to Oscar Barnes who 

completed his first Marathon by running 

the Brighton Marathon in a very respectable 

time of 4 hours 55 minutes. Oscar was 

running in memory of brother-in-law, Alex 

Hatch, and raised a fabulous amount. This 

follows Oscar’s previous fundraising efforts 

where he cycled from London to Brighton 

and also grew a beard that he subsequently 

shaved, raising well over £1000 in the 

process. Oscar is pictured here with his wife 

Louise, Alex’s sister. 


17 

John Lewis Cribbs Causeway – 

Our thanks to shoppers at John Lewis 

Cribbs Causeway (Bristol) who voted for 

us in the “Community Matters” scheme. 

Thanks to your support we received £666! 

Alan Andrews, Community Liaison 

Co-ordinator , John Lewis said: “The 

Partnership’s commitment to working 

with the local community, through the 

Community Matters scheme makes a real 

difference to those in need”. 

Liverpool 10K – Congratulations to 

pituitary patient, Sarah Elgahmi, who 

completed the Liverpool 10K in May. 

13 year old fundraiser - 

HUGE thank you to 13 year old 

Elle Dimbleby !! Over the 

festive period Elle had made mince 

pies, gingerbread men/trees and 

minions, which the train crews of 

First Great Western Reading Depot 

thoroughly enjoyed!! Elle managed 

to raise a fantastic £69.48!! 

Swindon Quiz – Thanks to 

Catherine Gladwyn who organised 

a quiz in her hometown of Swindon and 

raised a magnificent £747.50 

Golden Wedding Anniversary – 

Congratulations to Simon & Val Swancott 

who celebrated their Golden Wedding 

Anniversary! The generous couple asked 

for donations in lieu of gifts to celebrate 

this joyous occasion and managed to raise 

a fantastic £750 in the process!! 

Thank you to the family of the late 

Mr William Wernham of Lymm, 

Cheshire. They collected £85 in his 

memory at his funeral. Such support at 

this difficult time is greatly appreciated. 

RIP Mr Wernham. 

Congratulations to Bill 

Graham who cycled 

unsupported from England to 

the Alps. Bill managed to raise a 

staggering £2500 (correct at time 

of going to print). 

Pituitary Skydive – On June 

7th, 25 individuals travelled from 

every corner of the country to take 

part in the Pituitary Skydive. One 

participant, Graham Galley, even cut 

short his holiday so that he could take 

part. There will be a special feature 

in your next issue of Pituitary Life but 

so far the daring skydivers look on 

course to have raised over £10,000 

between them ■ 


18 

Professional Raising awareness articles 

London Marathon 2015 

Sunday 26th April was a fantastic 

day for the charity. We saw 10 

amazing runners participate in 

the Virgin Money London Marathon 

and between them the incredible team 

managed to raise a whopping £45,000! 

We would like to say an absolutely 

massive thank you to our amazing team 

of runners who ran on behalf of The 

Pituitary Foundation. 

team pituitary 

The team included our very own Trustee, 

Tom Sumpster, as well as Manish 

Madhvani, Graeme Summers, Nick 

Wright, Chris Wright, Matt Osbourne, 

Helen Sumner, “Where’s Wally” aka 

Hayley White (pictured below), John 

Newsham, Sally Arnold and Paul Arnold. 

Each runner had their very own 

personal reason for running as part of 

“Team Pituitary” and our Trustee, Tom 

Sumpster, was running to support his son 

Zac. 

Tom says “Zac was born on 18 January 

2013 and at the age of 2 is a cheeky 

little monkey, full of fun with the odd 

tantrum thrown in here and there. Daily 

life includes playgroups, singing and 

gymnastics classes and his hero/heroine’s 

include Peppa Pig, Batman and Thomas 

the Tank Engine ! To look at him when 

he is well you would have no idea he has a 

rare, potentially life-threatening condition. 

Zac has congenital panhypopituitarism 

having been born with a very small anterior 

pituitary gland and an ectopic posterior 

pituitary with no visible stalk. Put simply 

he is deficient in several hormones - 

growth, sex, cortisol and thyroid. With 

the help of modern medicine we are told 

Zac will lead a full life - he is injected once 

a day with growth hormone and a thyroid 

tablet and four times a day with cortisol. 

This critical therapy helps to regulate 

blood pressure, the immune system, 

helping the body respond to stress and 

helping the body to balance insulin to 

regulate blood/sugar levels. 

additional funding 

In his two very happy years we have 

dealt with four adrenal crises, which 

has resulted in hurried calls to the 

ambulance service in the middle of 

the night, and subsequent hospital 

stays in the High Dependancy Unit. 

We ran the London Marathon to 

raise awareness of pituitary conditions 

to provide additional funding for the 

Pituitary Foundation so that Zac and 

others can benefit from both the support 

function the charity provides and I would 

like to thank everyone who has generously 

supported our efforts” 

The Pituitary Foundation would like to 

thank all of our “Team Pituitary” runners 

for their dedication in preparing for this 

event and their amazing support. Thank 

you!! 

We’d also like to thank everyone 

who joined our cheering squad to help 

encourage them along at 13.5 and 22 

miles. It was a great atmosphere and a 

truly memorable day! ■ 

Manish Madhvani 



19 

Team Sumpster 

Hayley White in Where’s Wally costume 

Training for and running marathons and 

other endurance events for patients with 

adrenal insufficiency 

For those patients who are 

taking part in marathon events, 

we provide general guidance 

to help you keep safe and well 

whilst running. 

Training 

During long, slow training it is advised 

to keep to your usual daily doses of 

hydrocortisone (or prednisolone), but you 

can take an extra hydrocortisone 5mg (or 

1-2mg prednisolone) after you have been 

running for an hour to ninety minutes. 

It is important to keep well-hydrated 

and have access to fluids during training. 

If this is one of your first attempts as 

a post-diagnosis return to fitness, you 

might feel the need to take a little more 

steroid during early training and events. 

Therefore, an extra 10mg pre-training and 

if felt needed, an extra 5mg, at the end of 

your training session should be sufficient. 

This should be short term, until your 

body becomes accustomed to training 

and running distances. Overall, as long 

as fitness is built slowly, and training 

is completely ‘aerobic’ there should be 

little need for extra hydrocortisone or 

prednisolone above these amounts. Some 

patients find that they need the extra small 

doses, even in training, and it is important 

to ‘listen to your body’ and also discuss 

any issues with your endocrinologist. 

Marathon day 

On race day, most marathoners should 

have a fluid and ‘refuelling’ strategy and a 

suggested regime is to take an additional 

hydrocortisone 5mg at the start of the 

race and 5mg when you ‘refuel’. There 

should be no need to increase your 

hydrocortisone on the day before the race. 

Again, fluids will be accessible at points 

along the course, ensure your hydration is 

optimum before you start and you remain 

as hydrated as possible throughout the 

run – to hydrate efficiently, don’t gulp 

fluids but sip regularly. There will be no 

harm on the day by taking a little extra 

hydrocortisone. 

‘Hitting the wall!’ 

Runner information from London 

Marathon: When you’ve got your 

runner number, please fill in the medical 

information section on the back. Be 

careful not to damage or lose your number 

as replacements can’t be issued. 

If there’s a risk you may blackout during 

the race (for example if you suffer from 

fits), please put a red cross on the front 

of your number. This can apply to those 

with adrenal insufficiency and it needs to 

be clearly seen by the race marshals. 

Carry hydrocortisone tablets with you 

and if you feel you are ‘hitting the wall’, 

you can take 5mg or 10mg quickly. 

St John Ambulance will again be looking 

after first aid at the marathon and will have 

the following available on the day: 

• 1400 medical, nursing and first aid 

volunteers 

• 50 specialist crewed ambulances 

• 30 cycle response units (first aiders on 

bicycles who can weave in and out of 

crowds easily) 

• 1500 rehydration sachets for 

dehydration. 

Plan and know where first aid points 

are along the route. Keep safe and good 

luck! ■ 

Pituitary Life life | summer 2015

20 Raising awareness 

Thanks to you we did it! 

We are delighted to say that thanks to everyone who donated to 

our Endocrine Nurse Appeal we met our target! We received 

part-funding for the post during 2014/2015 and because of 

the help of everyone who donated we have now raised the £11,000 

that we needed for the remainder of 2015. We were overwhelmed by 

everyone’s support and it shows just how fantastic our Endocrine 

Nurse, Alison, is. Many people who donated said how Alison had 

helped them personally in their time of need and it is wonderful that 

so many of you donated to this appeal ■ 

Feeling 

inspired? 

If the team have inspired you to take 

on a challenge of your own then 

why not sign up for an event today? 

It doesn’t have to be a marathon. 

You could run any distance that is a 

challenge to you, whether that’s 5K, 

10K, Half Marathon or a Marathon. 

Maybe you’d even like to attempt a 

different type of challenge 

such as a swim, cycle 

or triathlon? It doesn’t 

matter which challenge 

you take on as long 

as you know that 

whatever you do it will 

be greatly appreciated 

by us and the pituitary 

patients that we 

support. 

If you would like to 

take on a challenge to raise 

funds for The Foundation 

then please call 0117 370 1314 

or e-mail jay@pituitary.org.uk 

We will be there to support 

you every step of the way, just 

as we are there to support 

pituitary patients every step of 

the way during their pituitary 

journey ■ 

New online resource: 

common and rare 

endocrine conditions 

I 

am writing to you regarding Endocrinology, Diabetes & Metabolism 

Case Reports, a new online resource that publishes and links together 

case reports on common and rare conditions in all areas of clinical 

endocrinology, diabetes and metabolism. 

This venture is a collaboration between Bioscientifica and several leading 

national and international societies around the world; all working together with 

the aim to further medical education and clinical practice. This is of particular 

importance in our field which encompasses many rare diseases that are often 

difficult to conduct clinical studies on. For this reason, case report literature is 

immeasurably beneficial, both for treatment and education. 

As a patient support group, we know that you are committed to supporting 

research in pituitary disease and hope that you can help us by adding a link to 

www.edmcasereports.com as a resource on your website. 

Your members can benefit by reading about the experiences of others living 

with pituitary disease. They may also be able to help other patients living with 

this disorder by encouraging their doctors to publish their own case reports. 

As this freely accessible database grows, it further enables practitioners to learn 

from each other’s experiences ■ 


Professional articles 

21 

continued from page 12 

social isolation and loneliness are a real 

concern for some individuals. Boyd & 

Bee observe that social networks are 

important to older adults, but that there 

are gender and ethnic differences in how 

such friendships are made, maintained 

and used. Remember, The Pituitary 

Foundation has a telephone buddy system 

that could help some individuals feel less 

alone and misunderstood. 

What about stigma & 

discrimination? 

Are other people going to give me a hard 

time? A lot of chronic health conditions 

(including pituitary conditions) can be 

classified as “invisible illnesses”, i.e. they 

are not obvious to the casual observer. 

Such invisible illnesses are associated with 

additional problems, most notably stigma 

of varying kinds. Data from The Pituitary 

Foundation 2008 Patient Satisfaction 

survey provides some support for this, with 

22% of respondents agreeing or strongly 

agreeing with the statement “I felt I was 

discriminated against at work because of 

my condition”. While 55% of respondents 

agreed or strongly agreed that having a 

pituitary condition had reduced their career 

prospects; and 42% of respondents agreed 

or strongly agreed that having a pituitary 

condition had meant that they have had, or 

will have to, give up work. Again though, 

these data were not disaggregated by age 

group so can only be seen as suggestive of 

general trends. 

People who don’t have a chronic 

condition generally do not understand 

concepts such as “good day/bad day”. 

They genuinely don’t understand why, 

if you can do something one day, you 

might not be able to do it the next. In 

the workplace this can lead to whispering 

campaigns, a withdrawal of support 

from co-workers and suggestions of 

“convenient” attacks of illness in an 

attempt to avoid work. Invisible illnesses, 

by their very nature, have no external 

markers, so others cannot tell the amount 

of pain you are dealing with, how tired 

you are feeling, whether you are feeling 

sick etc. The pressure to constantly have 

to educate other people about your 

condition can be exhausting. It can be 

very frustrating that co-workers can 

forget about your condition and start to 

make unhelpful demands and comments. 

You will find well-meaning folk who will 

tell you that it’s all in your mind; that if 

you just behave as though you’re fine, 

you will be. The Pituitary Foundation 

Wellbeing Series leaflet “Relationships & 

Communication”, details the commonest 

problems in this regard and suggests 

some possible coping strategies. 

Direct discrimination against older 

people can take many forms including 

being ignored because of assumed lack 

of mental capacity, deafness, and/or 

slowness. For example, if an older person 

is out with a younger family member, 

other people might talk to the younger 

person and ignore the older one. This 

behaviour seems to be more likely if 

the older person is in a wheelchair, or 

has some kind of mobility aid. Older 

people might find that others talk more 

loudly and far more slowly to them, and 

quickly get impatient with them (sighing 

and tutting). This is an area where there 

are striking cultural differences; in some 

cultures white hair is taken as a sign of 

wisdom, and for a young person to be 

allowed to spend time with an older 

person is seen as an honour. 

Is it all bad? 

Research suggests there are some things 

that we can do to help us age well, for 

example, remaining curious about the 

world, learning new skills, having new 

experiences, and continuing some kind 

of education. The research from lifelong 

learning tends to suggest that what you 

learn doesn’t matter, and it doesn’t have to 

be formal education. All learning seems 

to be associated with increased selfconfidence, 

which is in turn associated 

with an improved ability to deal with 

stress. Staying active is also good for us, 

not only in terms of physical health, but 

also in terms of reducing the risk factors 

associated with developing dementia (i.e. 

weight, blood pressure, and cholesterol). 

However, for some individuals with 

a pituitary condition, just doing the 

activities of daily living is exhausting, and 

the idea of being curious about the world, 

engaging in life-long learning, taking up a 

creative hobby, or exercising regularly all 

feel like too much of an extra burden. 

I’ve already said there are large gaps 

in our knowledge about the psychosocial 

aspects of living with a pituitary condition. 

Elsewhere in this magazine you will find 

an article about the research that Hayley 

Thomas is undertaking at the University 

of Plymouth to help us better understand 

the issues associated with young people 

who have a pituitary condition. It feels to 

me that a similar project focused on the 

needs of older adults would be very useful 

to help us develop a proper understanding 

of what it’s like to age with a pituitary 

condition ■ 

Emergency hydrocortisone refusal letter 

This letter enclosed free with your magazine has been produced for 

patients in the event of an emergency situation, where you are refused 

hydrocortisone, by a health care professional (HCP). 

If the HCP refuses you hydrocortisone, you or your family can ask the individual 

to sign this letter. Once it is signed and dated, this letter could go into your hospital 

notes. In any event, if you are in A&E or on a hospital ward, the patient or their family 

should insist on the HCP urgently contacting the 

endocrinologist on call. Hopefully, this letter 

will never need to be signed as the HCP reading 

it should understand the necessity of treatment 

for the patient’s safety. 

Please note: The Foundation cannot become involved in 

individual disputes, but our hydrocortisone resources can be 

accessed from our website and used by the patient or their 

family for information and awareness ■ 

Emergency Hydrocortisone in Adrenal Insufficiency 

Patient’s name: _______________________________________ 

DOB: ________________________ 

My Consultant is: 

_____________________________________________________ 

I am a patient with hypopituitarism and adrenal insufficiency. I have 

explained to you that, in case of emergency, I need an injection of 

hydrocortisone. You have been made aware that refusal to inject 

me could be life-threatening. 

Please sign below confirming that you have refused to give me 

hydrocortisone. 

Signed: ____________________________________________ 

(To be signed by the refusing health professional - Ambulance, A&E or Ward Staff) 

Print name: ____________________________________ 

Date: ______________________________________ 

Hydrocortisone is a steroid hormone produced by the adrenal gland. It plays a 

complex role in regulating body functions and is essential for survival. A good 

majority of people with pituitary disease have to take replacement hydrocortisone 

daily, as they don’t produce this naturally. Therefore, as they take replacements, 

they don’t have the natural surge of cortisol if they become acutely ill, are vomiting 

evere shock. 

ection is vital! (The patient 

his


Research Title: Understanding the needs 

of children and young individuals with a 

pituitary condition Hayley Thomas – PhD at Plymouth University. 

It’s fairly well known that there are 

big gaps in our understanding about 

the psychosocial aspects of living 

with a pituitary condition as an adult, 

but when it comes to understanding 

what it’s like for children and young 

people, we know even less. My name is 

Hayley Thomas, and I’m undertaking 

a PhD at the University of Plymouth 

focussed on helping us to understand 

what it’s like to have a pituitary 

condition as a child or young person. 

So far, I’ve identified three areas which 

I will explore in my PhD. Firstly, we need 

to understand the needs of children 

with a pituitary condition, particularly 

the psychological and social aspects. We 

know that the management of a pituitary 

condition can be extremely difficult for 

adults, and we are starting to understand 

what particular elements require 

psychological help and support. We want 

to know if it’s the same for children and 

young people with the condition. 

Secondly, we want to understand the 

decision-making that children and young 

people engage in with regard to their 

treatment. We’re particularly interested to 

know how much control children, young 

people and their families believe they 

have over their care. This is a particularly 

difficult topic that involves identifying the 

degree to which children and young people 

can become involved, in determining their 

own treatment plans. 

Thirdly, we aim to investigate how 

children and young people manage their 

conditions. Transition clinics provide a 

stepping stone from paediatric care, into 

more adult health care services. Transition 

clinics hopefully provide the young adult 

with the tools needed to manage and 

control their condition with confidence, 

as well as providing essential support 

along the way. The transition clinic model 

will be studied, with a view to making 

recommendations for future interventions 

for young people with pituitary 

conditions. It is hoped that this will allow 

young individuals to feel empowered to 

self-manage their conditions for the rest 

of their lives. 

So far, I’ve been focusing 

on designing a study that is best 

suited to making sure that we capture 

and properly understand the needs of 

children with a pituitary condition at 

different ages and stages of treatment. 

The plan for the study is coming along 

nicely, with the necessary research design 

and NHS ethics applications underway. 

There are two things that I’m currently 

working on where I could really use some 

help: 

1. I’m looking for Pituitary Foundation 

members to form an advisory group 

for the research. The main work in 

the first instance, is to look at the 

research materials that I’m developing, 

to make sure that they are suitable for 

the different age groups that I will be 

working with. 

2. I’m also looking for participants who 

wish to take part in the study. If you 

have a child or young person aged 10 

or over, and you would be interested in 

talking to me about your experiences 

of diagnosis, treatment and life with 

the condition, then please get in touch. 

Similarly, if you are a young person 

aged between 18 and 25 and you’d 

be willing to talk to me about your 

experiences, please get in touch. 

If you would like to receive more 

information regarding this research, or if 

you are interested in being involved in any 

aspect of this research, please contact me 

via email: hayleylouiset@gmail.com. 

Thank you ■ 



23 

Trigger words when calling 

999 for an ambulance 

For adult patients on 

hydrocortisone in an emergency 

situation 

Once you are connected to an 

ambulance 999 operator or 

call handler, they will ask you 

a series of questions to establish 

what is wrong. This will allow them 

to determine the most appropriate 

response as quickly as possible. 

Confusion may arise, due to a variety 

of trigger words mentioned by patients or 

their family, which may not be recognisable 

quickly by the call handler, including: 

• Pituitary patient 

• Has a pituitary condition 

• Secondary Addison’s 

• Steroid suppression 

• Adrenal suppression 

• Adrenal insufficiency 

• Addison’s crisis 

• Hypopituitarism 

• Steroid dependant (many conditions 

can cause this). 

Many ambulance trusts adopted the 

trigger words ‘Addisonian crisis’ for their 

protocols, following the 2006 JRCALC 

guideline, which authorised paramedics 

to give injected hydrocortisone for crisis 

response, in addition to asthma and 

anaphylaxis treatment. It was only in 

2013 that JRCALC extended its wording 

to make clear that secondary (pituitary) 

patients were also covered by this 

guideline and suggested that adrenal crisis 

should be the preferred term. 

Medical alert talisman wording 

Our medical committee advises that 

patients have ‘Hypopituitarism, on 

steroid replacement and at risk of 

adrenal crisis’ engraved on their medical 

talisman jewellery. 

For children who have adrenal 

congenital hypoplasia (ACH) 

or all other cortisol-deficient 

disorders: 

The key statement or trigger wording when 

calling 999 is Adrenal Insufficiency * 

Medical alert talisman wording is Adrenal 

Insufficiency.* *(Ref: GOSH) ■ 

Understanding Cortisol Tests 

Alison Milne, Endocrine Specialist Nurse 

Cortisol is produced by the adrenal 

glands which are controlled by 

the pituitary gland. Cortisol levels 

are usually high in the morning when 

we wake up and then fall gradually 

throughout the day - this is called your 

diurnal rhythm. Levels of cortisol in 

the blood can vary dramatically from 

individual to individual. Before we 

start discussing blood cortisol levels 

it is important to remember that your 

results must be interpreted with your 

own laboratory reference ranges. They 

cannot be compared with other labs or 

internet website values. 

Common terms used for 

cortisol testing 

Random cortisol: This means we do not 

know exactly where in the individual’s 

diurnal rhythm / normal day we are 

sampling. We do try where possible to 

get a 9am cortisol or, at the very least, 

a morning blood sample. In reality, this 

is not always possible and therefore, we 

should always note the time accurately 

on the sample to enable us to assess the 

result appropriately. Afternoon cortisol 

samples, if borderline low, should really 

be reassessed with a morning sample 

The ‘normal’ range varies from 

180-620nmol/L (Reference: Oxford 

Handbook of Endocrinology) 

Short Synacthen Test: This is the test that 

assesses adrenal cortical function/reserve. 

This test is carried out to assess if the 

adrenal glands respond appropriately and 

produce cortisol when required by the 

body. A synthetic dose of the hormone 

ACTH (Adrenocorticotrophic Hormone) 

which is normally produced by the 

pituitary gland is administered. 

The patient has a cannula inserted into 

a vein to enable us to withdraw blood 

more than once and also to administer the 

medication. 

Cortisol is a stress hormone and 

therefore the action of cannulation can 

cause an increase in the cortisol level. 

Ideally, we should postpone taking our 

first sample for at least 15 - 20 minutes. 

Blood sample for cortisol level is 

obtained at baseline = 0 minutes (after 

resting time as explained above). 

ACTH level is also obtained at this 

sample time. 

Synacthen 250mcg is administered 

intravenously, followed by a flush to keep 

the cannula clear. 

Patients may experience a ‘hot flushed’ 

feeling and/or slight nausea, or a feeling 

like ‘butterflies’ in your stomach. These 

symptoms usually pass very quickly. 

Indeed, some patients do not get any 

symptoms at all. 

A further blood sample for cortisol is 

obtained at 30 minutes. Some centres obtain 

a 60 minute cortisol sample. The test is then 

complete and the cannula is removed. 

There should be no long-lasting effects 

from having this test carried out and you 

can go about your usual daily activities 

following your appointment. 

What the results show? 

• Initial baseline sample >190nmol/L (> 

means above) 


24 


• Cortisol levels should peak at around 

500nmol/L at 30minutes 

• The increment requires to be at least 

200nmol/L from the baseline 

NB: these levels are a guide and may well 

vary slightly depending on local assays 

Cortisol day curves 

This is a test that is not frequently used 

these days and it seems to vary across the 

country whether it is used at all. 

Generally, we use this test when you are 

on replacement steroid therapy, to assess 

the level of steroid within your blood. 

This can help to ascertain if you might be 

over- or under-replaced. You will be asked 

to attend for a certain length of time e.g. 

four hours; six hours; eight hours; 12 hours. 

Your steroid medication should be withheld 

first thing in the morning but bring it with 

you to the clinic/hospital. A cannula will 

be inserted, resting period should be taken 

into consideration as stated above. Initial 

baseline cortisol level obtained. You will 

then be asked to take your normal dose of 

steroid. Hourly blood samples will then be 

collected, we do this hourly until your next 

steroid dose is due. Following that dose of 

steroid, we continue sampling and so on 

until the end of the test as requested by 

your consultant. 

A question I am frequently asked 

is: “why is my cortisol level so low/ 

undetectable at the start of the day 

curve?” This is to be expected as we 

already know you are steroid dependant. 

The results of this test will determine 

whether there are any adjustment to 

be made to your medication. Patients 

are often worried and anxious about 

attending for this test, not just because 

it can mean a lengthy time in the clinic, 

but they are concerned that we will be 

enforcing changes to their medication. 

Reassuringly, this does not always happen 

and indeed, can often just reiterate that 

you are on the correct replacement dose. 

Insulin Tolerance test 

This is the Gold Standard Test for 

the assessment of adrenal and growth 

hormone reserve. 

Cortisol and growth hormone are both 

released as part of the stress mechanism 

which is triggered by the induced 

hypoglycaemia. Blood glucose level must 

fall below 2.2mmol/L for an adequate 

stimulus. 

NB: This test is potentially dangerous 

and must be undertaken by experienced 

medical personnel. There must be clear 

indication that this test is required before 

it is performed. A doctor or nurse must 

be in attendance at all times. 

Contra-indications (reasons for not 

performing this test) 

• Age over 65 years 

• Ischaemic Heart Disease 

• Abnormal ECG 

• Epilepsy 

• Untreated hypothyroidism. 

• Severe hypopituitarism 9am Cortisol 

< 100nmol/L 

Protocol for performing test 

Fast overnight (can have tap water only). 

Full explanation of procedure and 

symptoms to be expected during test must 

be explained to patient. Patient’s weight is 

obtained to calculate the dose of insulin 

required, which will also be determined by 

your diagnosis. 

ECG (electrocardiograph) tracing 

of the heart rhythm to ensure no 

abnormalities. 

Intravenous cannula inserted (in some 

centres you may have two inserted), one 

in either arm. 

Basal Blood Samples for growth 

hormone, cortisol and glucose obtained 

(following cannula resting time as described 

previously). 

Time T=-15 mins & T= 0 

Blood Glucose using glucometer 

monitored at onset and with further 

samples to ensure adequate hypoglycaemia 

achieved. 

Following the basal sample at T=0, 

calculated insulin dose is administered 

intravenously. 

Samples are obtained as above at 30 

minutes, 45 minutes, 60 minutes, 90 

minutes and 120 minutes. 

Additional samples may be carried out 

between T= 0 & T-30 minutes because 

the patient may start to experience 

symptoms of hypoglycaemia from around 

17 minutes onwards. 

The nurse is usually experienced at 

picking up the signals that the patient’s 

blood sugar is dropping quite rapidly. 

Signs of hypoglycaemia 

Important to note that some patients can 

be asymptomatic or have minimal effects 

from the insulin, others may experience 

some but not necessarily all of the below 

symptoms. 

Sweating, clammy, thirsty, hungry, heart 

racing, sleepy, lack of concentration and on 

occasion, people can be angry and agitated. 

If these symptoms are prolonged and 

the patient is unable to converse or there is 

loss of consciousness the hypoglycaemia 

must be reversed. The nurse will already 

have the required medication to reverse 

hypoglycaemia prepared in advance. 

If this is the case sampling should be 

continued as adequate stimulus/stress will 

have been achieved. Following the test a 

carbohydrate containing meal must be 

given and taken prior to discharge. 

Interpretation 

The test cannot be interpreted unless 

hypoglycaemia (< 2.2 mmol/L) is 

achieved. 

An adequate cortisol response is 

defined as a rise to greater than 500 

nmol/L. 

Patients with impaired cortisol 

responses i.e. < 500nmol/L but > 400 

nmol/L may only need steroid cover for 

major illnesses or stresses. 

An adequate GH response occurs > 

20mU/L. 

These values must be interpreted 

against your own laboratory reference 

range and your consultant/hospital 

guidelines. 

Glucagon Stimulation test 

This may be used to test for cortisol 

and growth hormone reserve, when the 

Insulin Tolerance Test is contra-indicated. 

Fast Overnight (tap water only) 

IV cannula inserted (again noting the 

resting period as previously explained) 

Basal Samples for cortisol, growth 

hormone and glucose at T=15 mins and 

T=0 mins 


news Professional articles 25 

Administration of Glucagon 1mg (1.5mg 

if weight >90kgs) 

This is administered by injection 

either SC - subcutaneously or IM - 

intramuscularly. 

Further samples obtained at 90 minutes, 

120 minutes, 150 minutes, 180 minutes, 

210 minutes and finally, 240 minutes This 

test can cause nausea, stomach upset and 

headache. 

Interpretation 

We expect a rise in glucose levels. 

Cortisol rises to >500 nmol/L 

(nanomoles per litre) and growth 

hormone >20mU/L (milliunits per litre) 

Some centres may vary slightly on 

how and when they perform the above 

individual tests but this information is 

given as a general guideline to aid your 

understanding of what you should expect 

from having these tests performed. 

As always, I’m happy to take questions 

regarding any of the above or other tests 

which you would like explained ■ 

Efcortesol shortage 

The latest update (April 2015) from Amdipharm is that Efcortesol should 

be back in availability at the end of July. It will be supplied only through 

Alliance Healthcare. 

Your pharmacist can contact Amdipharm on 0208 588 9100 if they have further 

queries. Please be reassured that you can use the powder Solu-Cortef 100mg for the 

injection instead. This needs to be mixed with water for injection (2mls), ring your 

hospital or our Endocrine Nurse Helpline if you have any queries about this. We are 

aware Solu-Cortef is in plentiful supply currently, but if your pharmacist is having 

problems, they should contact the manufacturer directly to gain a supply. 

When The Foundation contacted AMCo (Amdipharm Mercury Group), about 

the availability of Efcortesol which was expected to be in stock during March, they 

told us: 

“We have had a change in the manufacturer and API source which has caused this 

out of stock situation, however we are pleased to let you know that we have resolved 

the issues and are expecting the product to be available by July 2015.” They apologise 

for any inconvenience caused. 

For those patients concerned about not having a HC injection at home, 

because of supply issues, we advise in event of emergency, you should always 

call an ambulance and state ‘addisonian crisis’ or ‘adrenal crisis’ ■ 

RESEARCH STUDY 

Does Cushing’s disease affect you or someone you 

know? 

Researchers at selected NHS hospitals are offering paents the opportunity to take 

part in a Clinical Research Study of a targeted medical treatment for Cushing’s 

disease. 

Who can parcipate in the study? 

Adult paents with Cushing’s disease who are not suitable for 

surgery or who have received prior surgery, and who’s Cushing’s 

disease sll requires further treatment; and paents who 

have not received radiotherapy in the last 3 years. 

Potenal paents will have assessments to determine their 

eligibility. If enrolled they will undergo medical examinaons 

and assessments, and receive study medicaon. 

Paents who parcipate in the study will have their travel costs 

reimbursed. 

FOR MORE INFORMATION AND TO 

FIND THE NEAREST CENTRE 

PLEASE CALL THE LEAD RESEARCH 

CENTRE ON : 

0161 446 8437 

CLCI699C2301 Version 1.0, 03‐Sep‐14 



New medicine for acromegaly 

A 

new medicine will soon be 

available for certain people 

with acromegaly. The brand 

name of the medicine is Signifor and 

the medical name is pasireotide LAR 

(standing for ‘long acting release’). 

Acromegaly is caused by a benign 

growth on the pituitary gland, which 

is found in the front, central part of 

the brain. 

Doctors are being briefed that Signifor 

is suitable for adults where surgery has 

not cured their acromegaly (or if surgery 

is not an option) and whose disease is not 

well controlled with the medicines that 

are currently available. 1 

Funding for Signifor 

In England, the NHS needs to decide 

whether it wants to, and can afford, to 

make Signifor available to all suitable 

patients. This decision may be made next 

April, or potentially April 2017 or beyond! 

In the meantime, doctors can ask to use 

the medicine by making an Individual 

Funding Request (an IFR - more 

information about IFRs is available on 

The Pituitary Foundation website). Before 

making a funding request, the doctor asks 

for permission from their patient and 

keeps them informed of whether the 

NHS will pay for the medicine. 

Doctors in Wales need to apply for 

funding for individual patients also, while 

the NHS in Scotland will decide in the 

spring whether it will make the medicine 

available to all patients. Each nation in 

the UK makes their own decision about 

health, meaning that it is not simple. 

Patients who may be suitable 

for Signifor 

Acromegaly is a rare and serious condition 

that can lead to major health problems and 

a shorter life. Treatments aim to reduce 

these problems and allow a normal length 

of life. The aims for effective treatment are: 

• Ongoing control of two hormones - 

growth hormone (GH) and insulinlike 

growth factor 1 (IGF-1) 

• To reduce or stabilise the size of the 

benign tumour 

• Improve signs and symptoms 

associated with the disease 

• Preserve pituitary function 

• Prevent the benign tumour coming 

back once reduced or removed 2 

These two hormones are not controlled 

in many people with acromegaly, despite 

them taking maximum doses of current 

somatostatin analogues.2 This is where 

Signifor comes in. 

A clinical trial of nearly 200 people 

whose hormones levels were not 

controlled on existing medical treatment 

compared the effect on patients taking two 

doses of Signifor (40mg or 60mg) against 

patients taking two other medicines. The 

good news is that, comparing Signifor to 

the other medicines: 

• GH and IGF-1 hormones were 

controlled in more people on Signifor 

treatment 

• the benign tumours were reduced 

in size in more people on Signifor 

treatment 

• Greater improvement in symptoms 

were observed in patients on Signifor 

than on the other two medicines 

As well as the positive benefits, medicines 

can cause other unwanted changes, called 

side effects. Patients taking Signifor were 

more likely to have raised blood sugar, 

diabetes and diarrhoea than those taking 

the other medicines. While most of these 

side effects were mild to moderate, some 

patients stopped taking Signifor as a result 

of these side effects. Looking overall, 

Signifor was well tolerated by patients. 

In conclusion, Signifor offers a new 

alternative treatment for patients with 

acromegaly whose condition is not 

controlled by their existing somatostatin 

analogues. Research and development of 

the medicine was conducted by the Swiss 

pharmaceutical company Novartis. 

If you have questions about 

acromegaly, Signifor or Individual 

Funding Requests, please contact us via 

the Pituitary Foundation website, helpline 

or email support line. You can also request 

a booklet about acromegaly ■ 

References 

1. Signifor summary of product characteristics, 

Novartis Pharmaceuticals UK 

Ltd. 

2. Gadelha M et al. Pasireotide versus 

continued treatment with octreotide or 

lanreotide in patients with inadequately 

controlled acromegaly (PAOLA): 

a randomised, phase 3 trial. Lancet 

Diabetes Endocrinol 2014; 2: 875–84. 

New booklet: 

Living with 

DI for young 

adults & teens 

This is the first booklet in our 

exciting new series for young 

adults and teens. Order your 

copy though our website shop, or 

download for free. 


news Patients’ stories 

27 

Marilyn’s story 

I 

think I was about 28, when I first noticed things were 

not right with my health. My tummy was getting larger, 

which I put down to getting older as I had always been 

about eight stone, even after my children were born. 

I muddled along knowing that something was wrong; a few 

years later, when my daughter started work (she was in the same 

building as myself as we worked at BT) and everyone knew 

everyone else - people were asking her if I was pregnant. Before 

this, I had had a lot of personal problems, taking on a part-time 

job as well as the day one to help with the mortgage etc. I went 

to my GP who said I was suffering with stress but I knew it was 

more than that as I was going to bed after tea and I didn’t want 

to go to work either, but I carried on. 

My direct boss, who didn’t know my job, was stamping 

her foot at my desk and telling me to get on with it when she 

should have been doing some of it herself. I didn’t want to 

talk to anyone either. My part-time job lasted for three months 

every year and coming to the end of this particular year, things 

suddenly started to clear as we had just had a big pay rise at 

work. It was only when I was being diagnosed when asked if 

I was depressed, I knew what I had gone through and it was 

something I never want to happen again. 

safari to Kenya 

I then started to go on holiday with my friend and my daughter, 

on a safari to Kenya and we liked it so much we booked again 

for the following year. 

In the meantime, I was eating like a horse and coming home 

and decorating until the early hours. In fact, my dogs would look 

round the door and shrug and say ‘no walk today’ and go to bed. 

But in my bad times I would go where no one could see me with 

the dogs and cry. 

One day, I was in the garden and caught my arm on a dead 

twig; the skin immediately shrank back and left an open wound. 

I went straight to A&E and the doctor said he wouldn’t be able 

to stitch it as the skin would rip, but he managed to do three 

stitches; he also asked if I took steroids? I said the only tablets I 

took were for headaches - I didn’t even know what steroids were. 

By this time, if I banged my shin the same thing happened 

and I would end up with an ulcer and bandaged from ankle 

to knee. One day at work, I was photocopying and when I 

turned round someone had left the bottom drawer of a metal 

filing cabinet open and it caught my leg and the same happened 

again - the skin shrivelled up, only now it was a bigger wound. 

Off again to A&E at a different hospital and two doctors asked 

me at different times if I took steroids. Once again, I had two 

bandaged legs. 

This steroid thing got me thinking, so I went to my GP and 

said there must be something in my blood that is causing this 

and I said my stomach wasn’t natural either. Her reply was, well 

what do you want to know for, do you think there is something 

sinister in there? I was about to walk out when she gave me a 

note to see a specialist. I duly went and the first thing he said 

was “You are carrying too much weight there” and prodded my 

stomach; my blood pressure was far too high. He sent me for 

an X-ray and when I went back for the results he said my heart 

was enlarged and he was thinking hormones, but couldn’t put his 

finger on it and would send me to an immunologist. 

cyst 

Before I got an appointment I was going on holiday again and 

I made an appointment with the GP - one who I hadn’t seen 

before to get something for my feet as they always felt as though 

they were going to burst. He was reading my notes and asked me 


28 Patients’ stories 

a few questions and said he thought he knew what was wrong 

with me - it could be a cyst. 

By now, going to and from work, I couldn’t get up the stars 

at the stations without hauling myself up by the spindles under 

the banister and was convinced I would soon be in a wheel chair. 

When I arrived back from holiday there was an appointment 

for me to attend Withington Hospital where I was asked 

questions and told to crouch down - of course, I couldn’t get 

up again. The doctor called the consultant and said “I think we 

have a ‘Cushing’s” and to me “Could you come to Christies on 

Monday?” This was 20 years after I knew there was something 

wrong, as you know when your body is not up to scratch. Whilst 

in Christies for the week, I had to collect all my urine and had my 

blood taken early morning and midnight. At the end of the week 

the ward doctor came to me and said they had found ACTH in 

my blood but not in my urine, we will have to go back to the lab. 

I also had a scan but nothing showed up. 

back for results 

I went back about a month later for the results the doctor said 

we had a discussion about you last week and there is nothing we 

can do. I asked him what did he mean - if it was in my blood 

it should have been in my urine as well. “OK” he said, do me 

another 48-hour collection and I’ll take some more blood, and 

when it was all analysed it was there in both, but they had to find 

out where the growth was. 

Back in Christies for a week again and then to have sinus 

sampling at Manchester Royal. I would go as a sitting patient and 

come back on a stretcher. They also gave me a vial of drug to 

take with me. I was sitting in the waiting room and a sister came 

out and said it’s not as bad as you think. In I went and there were 

about a dozen people in there. What would happen was hollow 

wires would be threaded through my veins from my groins until 

they reached the pituitary, I also had a cannula in my arm, they 

injected the drug and after 15 minutes blood was taken from the 

three points at exactly the same second (or near enough); then 

again, after another eight minutes and again, near the end of the 

half hour, then the blood was taken straight to another hospital 

for analysis; I went back to Christies and bed for a couple of 

days. I went back a couple of weeks later and was told good 

news the tumour was on the right side and I would have to go 

down to the Radcliffe Infirmary in Oxford for the operation. 

This was now November 1991. I was lucky as my brother lives 

in Hertfordshire, so accommodation was no problem. 

lumbar puncture 

Two days after my op, the doctor came to take the plugs out of 

my nose and said he could heat the hospital with me I was so 

hot. The next day, my nurse asked why I wouldn’t open my eyes, 

I didn’t answer him and they were just going to do a lumbar 

puncture when they noticed my back was covered in a rash. They 

had given me penicillin three days before my op to stop infection 

- I was allergic to penicillin. Fortunately, I didn’t have to have a 

plug from my thigh. As soon as they changed the antibiotic I was 

a different person and going about the hospital and into Oxford 

town to the shops. The hospital is in the old buildings and very 

quaint. I just had three stitches under my top lip. 

blood tests 

When I got home, it was straight into Christies for blood tests 

and lo and behold there was ACTH again. I was given bags of 

tablets, to no avail, so the consultant said there was only one 

way: a bilateral adrenalectomy, which I had in April 1993. I had 

the op at Christies on the Wednesday and on Friday when my 

partner (husband now) came to visit, the doctor was shouting 

down the phone for any ambulance to get me to Withington into 

ICU (Christies don’t have an ICU for obvious reasons). I knew 

nothing since before my op, only this little anaesthetist bustling 

into the ward saying I didn’t know you were on my list - drink 

this and I had gone in seconds. I had been back on the ward 

for some days when I felt tightness in my leg and woke up next 

morning to a pulmonary embolism which was seen to PDQ. 

When I got home after about three weeks, I was ok and 

eventually decided to take medical retirement and redundancy 

and got a job in a charity shop three days a week. 

In 1997 I asked for another scan as Christies had then got an 

MRI only to find that my growth had regrown. To save another 

op, I had 15 doses of radiotherapy and a few weeks later got 

married and went on a wildlife expedition in Borneo. 

I had an adrenalectomy and radiotherapy and for some reason, 

I now have Nelsons Syndrome instead of Cushing’s. 

treatment for asthma 

Two years ago, after being ill for some months and the GP 

treating me for asthma - I kept telling him about my stomach 

which was now bigger than a football and absolutely solid and 

I could only walk a few paces before I had to stop as I couldn’t 

breathe, so I spent the time sitting in a chair. Eventually he 

decided to send me into Glan Clwyd Hospital (we now live in 

North Wales) to see what was wrong with me. I then found out 

that I had heart failure. One of the tests I had this year was a 24- 

hour monitor and the cardiac doctor thought my heart problem 

was probably due to everything, especially my enlarged heart. 

Whenever I have any blood tests though, they are always perfect. 

I was 70 last May with the normal aches and pains of an oldie, 

my walking isn’t too good but I manage, and my condition hasn’t 

stopped me from going on holiday. I think now I have been going 

to Africa every year since 1989 and is now in my blood as they say, 

but with all the troubles there we have decided Sri Lanka may be 

better. 

And to finish on a funny note, the surgeons who performed 

my adrenalectomy were coming to see me every day on the ward, 

in ICU and on the ward later, (they work at both hospitals); one 

day they asked me if I had any pains in my tummy, I said “No, 

but no doubt you hoofed everything out and hoofed it back 

again” and he said “You’re not far wrong and actually we were 

calling you Lazarus”, so that’s how bad I was ■ 


Patients’ stories 

29 

Mike’s story - twenty five years on 

I 

sat up in bed one morning in January 

and suddenly realised it is 25 years 

since I was diagnosed with a pituitary 

tumour and having it removed later in 

that year. Perhaps now is the time to 

reflect on the events of the last quarter 

of a century on my life. 

In the late 1980s I began to feel extremely 

tired and unwell and despite several visits to 

my GP we failed to get to the bottom of 

it. I was sent to see a liver consultant who 

did some extensive tests and I ended up 

being sent home with some tablets and the 

thought it could be the dreaded ME (very 

much in fashion at that time). 

We move on a year and major company 

restructuring following a takeover, 

resulted in our move to Oxford and while 

making Bristol staff redundant I suffered 

a heavy nose bleed and was taken to 

Frenchay hospital by my MD. By the time 

I got there the bleeding had stopped and 

after a cursory look was sent home. 

In mid-1990 I was working in Oxford 

late one evening when I began to experience 

severe pains in my left arm so decide to 

drive to the John Radcliffe Hospital where 

I was admitted for a couple of days hooked 

up to a monitor and parted with a fair 

amount of blood plus a twenty four hour 

urine collection. 

The registrar came to see me and said no 

heart attack but hormones detected in my 

urine. I was sent home and referred to Dr 

Burke, an Endocrinologist, who saw me in 

August and by then I was experiencing very 

severe hot flushes every few hours. 

While I was meeting Dr Burke I had a 

real supersonic flush and he immediately 

sent me off for an x-ray of my head and a 

pituitary tumour was discovered. 

After more tests and scans, I was 

operated on by Mr Richard Kerr at the 

Oxford Radcliffe Infirmary (no longer 

exists - now a college). He is now President 

of the Society of British Neurological 

Surgeons and at the time gave me one 

piece of advice. Be prepared not to be 

taken seriously when you return to work 

as you have no scar. How true! 

Well, here I am 48 years old, with a 

very stressful job asking ‘where do I go 

from here?’ (No Pituitary Foundation at 

this time - you lucky people today in the 

same situation, have wonderful support at 

no cost). 

As I recovered (back at work early at 

the insistence of my FD) tests continued 

to establish replacement hormone needs 

and I threw myself back into my job and 

returned to my active lifestyle (mainly 

walking). 

I am a very positive person but I 

suddenly realised, after about three 

months, this approach was not working so 

I talked to my wife Anne and my daughters 

about what to do next. I decided the best 

way forward was not to try and beat or 

ignore the condition but to work with it 

and this I have done successfully to the 

present day, although old age is having an 

effect as well!! 

What do I mean by that? Well, I 

discovered mornings are good, afternoons 

bad; so I started work as early as I could 

i.e. this is being written in the early 

morning, as after 2pm I am usually pretty 

useless. This has worked for me and since 

then life has been a bit easier. 

Close family and friends have been very 

supportive, apart from one close family 

member who told me I needed anger 

management. I can tell you that showed 

a complete lack of understanding and it 

hurt very much. 

In the next ten years I walked up 

several mountains in Wales, including 

Snowdon and also completed several 

National Trails, the West Highland Way, 

Great Glen Way and St Cuthbert’s Way 

among others. 

In about 1994, Dr Burke retired and was 

replaced by Prof John Wass (co-founder 

of The Pituitary Foundation) and I realised 

what good hands my wellbeing had been 

placed in. In 1997, following a five year 

scan, it was discovered my tumour was 

growing again and the decision was made to 

have 28 sessions of radiotherapy over four 

weeks at the Churchill Hospital and despite 

being knocked for six, I continued to work 

all through the treatment (every weekday at 

8am). I recovered from this setback and was 

made redundant in another reorganisation 

in June 2000. We decide to move back west 

to be near our children but I continued to 

see Prof Wass at the OCDEM centre at 

the Churchill Hospital. John Wass retired 

from the NHS and I discovered that one 

of his young registrars at Oxford, Dr Karin 

Bradley, was now a consultant operating at 

the Bristol Royal Infirmary. I asked her if she 

would take my case on and to date I have an 

annual appointment to see her. A successful 

transfer for lucky me; from that comment 

you can gather I am looked after very well. 

I joined The Pituitary Foundation in 

2000 through the Bristol Support Group. 

They are a tremendous crowd of people 

and our ethos of helping watch each other 

has worked wonders. I am still an active 

member of the Group and also volunteer 

at the National Support Office - think I 

must hold some sort of record for folding 

raffle tickets! 

In my 70th year I walked Hadrian’s Wall 

with Anne’s cousin, Ian. No other word 

than ‘wow’ would describe the scenery 

and I was sponsored to raise funds for 

The Foundation, 

I would still love to walk another trail 

but think age is catching up on me and 

I have picked up other health problems 

on the way i.e. Type 2 Diabetes, hardened 

arteries and kidney stones to name a few. 

I am still walking around three miles a day 

mostly along the sea front here in Weston 

Super Mare. I am now 73 and hope to 

go on for a good few more years with 

the support of my family, The Pituitary 

Foundation and my consultant, Dr Karin 

Bradley, and her team. 

Bearing in mind the danger of repeating 

myself, my great belief is this condition 

cannot be beaten but if you work with it, 

the quality of life you should achieve is 

good ■ 


30 

Patients’ stories 

Pat’s Story – a carer’s review, 11 years on 

Looking back over the last 12 years, 

since Tony had his diagnosis, 

(pituitary apoplexy from a macro 

prolactinoma) we have at times had 

quite a roller coaster of a ride! 

The Endocrine Team at the Queen 

Elizabeth Hospital carefully monitored 

his condition in order to stabilise his 

medication, and he is now checked on 

an annual basis. It took two years for 

him to recover the confidence to drive 

again. This seemed to me to be a bleak 

time whilst I came to terms with Tony’s 

limitations and frustrations. 

a life saver! 

I was finally able to persuade him to attend 

The Pituitary Foundation Birmingham 

and West Midlands Local Support Group. 

For me it was a life saver! Wayne, the Coordinator, 

ran the group with his mother as 

carer support. She helped me, by allowing 

me to voice my feelings of concern and 

inadequacy. I looked forward to talking 

to her and others at the meetings, and was 

glad to see how it helped Tony to talk to 

others too. 

Our GP practice found the diagnosis 

very interesting, and a medical student 

who happened to be spending time with 

one of the doctors was told that she 

should feel very honoured to have met a 

pituitary patient, as most doctors never 

see one in the whole of their career! 

We have a very supportive family who 

encouraged me to go back to doing some 

of my hobbies. I was able to rejoin my 

dressmaking class and a fitness class, 

whilst Tony was kept an eye on. We 

even ventured on holiday in our touring 

caravan, with our sons helping by towing 

us there and back. The site managers 

were brilliant in placing us conveniently, 

so that Tony had as little distance as 

possible to walk. I found this holiday 

terrifying at first, as I felt isolated from the 

help we had got used to. Being a retired 

Occupational Therapist didn’t help, as I 

felt inadequate. 

I decided to become a volunteer at the 

QE, when Tony was fit enough to be 

left, as a way of giving something back 

to the hospital that had saved his life. 

I still do this and enjoy the work I do 

very much. 

In 2008, our LSG Co-ordinator 

resigned as he was moving away, and 

so, that July we held our first meeting 

as Joint Area Co-ordinators to avoid 

its closure. As a result of this, we have 

met some lovely, interesting people 

and attended The Foundation Training 

Days and Conferences. 

Our constant problem has been the 

fact that Tony was already an insulin 

dependent Diabetic type 2, as this 

can confuse symptoms at times. For 

instance, he had an Adrenal Crisis in 

January 2012, which I mistook for a 

Hypo at first. When the glucose failed 

to improve his condition, I realised 

that his condition had become serious 

and called an ambulance. During his 

admission, Sherwin, one of the Specialist 

Endocrine Nurses, came to demonstrate 

to Tony and me how to inject emergency 

hydrocortisone. We told him that we ran 

the Local Support Group, and he agreed 

to come to a meeting to show all the 

members. Everyone was given an orange 

to practice on! 

sleep clinic 

Tony has been a volunteer gardener at a 

nearby local hospital now for over two 

years. This has been a relief for me and an 

outlet for him. He has been able to start a 

new interest in a work environment, giving 

us both our own space. He loves working 

again and the team have developed quite 

a status at the hospital for what they do. 

At his annual review in the pituitary 

clinic in 2013, I mentioned that Tony still 

seemed very sleepy, as he kept dozing off 

when he sat down. Arrangements were 

made for him to have testosterone levels 

checked, and referral to the Sleep Clinic as 

he may have sleep apnoea. As it happened, 

both needed attention. He was told that 

although the increase in testosterone may 

help, Tony was overweight and this causes 

fat to sit around the neck and press on 

the airway during sleep. He was given 

a mask and machine to help, which had 

to be used every night. Fortunately, his 

condition was considered to be mild, 

and, although he had to declare it to the 

DVLA, he was still able to drive. He was 

furious with me for telling the consultant 

that he fell asleep, and blamed me for him 

being expected to wear the mask! 

For Tony this was the final spur to lose 

weight. He spoke to his GP, who was 

pleased to refer him through the NHS 

scheme to Weight Watchers. I am very 

proud of Tony’s commitment! He has 

lost 27lbs, achieved his goal, resulting 

in normal readings for his sleep and a 

reduced need for insulin. The mask and 

machine went back and now he very rarely 

needs to take insulin four times a day, as 

he did before. For the first time both he 

and I feel that at last he is in control of 

his wellbeing. 

We have just celebrated our 50th 

Wedding Anniversary, and have several 

events planned over the year. We have a 

wonderful, caring family, who still keep 

an eye on the ‘Old Chap’! We both want 

people to know that, yes, for patients and 

their carers, there is a future!! ■ 


news Patients’ stories 

31 

John’s story - continued from last issue 

Editor note: We apologise, due 

to a design oversight, that some 

of John’s story from the spring 

2015 edition (no. 29) was missed; 

this excerpt below is from the 

last column on page 21 to first of 

upper columns on page 22. 

Before we flew back to Bermuda 

we had to attend a week long 

business conference which was 

a nightmare. Trying to outwardly 

maintain the appearance that all was 

well yet not being able to see properly 

was very difficult. 

On our return, I had a visual field test 

which verified the absence of peripheral 

vision and sent for an MRI, which 

revealed a pituitary tumour pressing on 

the optic nerve. Bermuda didn’t have the 

resources or expertise to deal with this 

type of condition so I was referred to the 

Lahey Clinic in Boston for a full diagnosis. 

We left a warm and sunny Bermuda and 

arrived in Boston on a bitter cold mid- 

October day. As I recall, we headed 

straight to the shops to buy enough warm 

clothes and boots to last for the long 

weekend we thought we would be there. 

US neurosurgeon 

We met with Dr Freidburg, Chairman 

of the Lahey Hospital Trust and one of 

the preeminent neurosurgeons in the US. 

After a day of further tests the diagnosis 

was confirmed. Dr Freidburg had a space 

in his calendar to operate the following 

Friday – Halloween - and outlined the 

procedure. The transsphenoidal removal 

of the tumour would take about 2 ½ hours 

and entail a two day stay in hospital with a 

further two weeks of recuperation before 

being allowed to fly back to Bermuda. 

Our long weekend was expanding... 

In the event the op took almost six 

hours as the tumour was old and fibrous 

and proved difficult to remove. It tore 

the arachnoid and spinal fluid started 

leaking which had to be packed with 

tissue from my thigh. A full craniotomy 

was scheduled for the following week. 

Afterwards I spent two weeks in intensive 

care and a further three on the ward. 

From there I was discharged to a local 

hotel and attended the hospital daily for 

further postoperative checks. Boston had 

experienced a very heavy snowfall, which 

delayed us even further and we eventually 

got back to Bermuda seven weeks after 

we had left. 

return to work 

I had lost a huge amount of weight and 

strength but slowly started recovering and 

did a phased return to work over the next 

couple of months. Within two years I was 

able to take part in a 15 mile charity walk 

coming in the top five. 

However, I came to realise that I 

was less sharp-minded than previously 

and in an industry answerable 

to shareholders and variable 

market conditions the pressure 

was intense. I struggled with 

things I had formerly taken in 

my stride and suffered bouts 

of depression. Boardroom 

decisions were being made 

that I did not agree with 

but didn’t have the energy 

to fight, so I resigned. It 

offers little consolation that the 

company failed soon after. 

We left Bermuda and 

returned to our house in Kent and I 

attempted to form a new company but it 

was evident that my drive and energy had 

gone and I shelved the project. 

After a year of doing no work I felt 

I needed to do something and took a 

junior position with a broker in London, 

which was mostly enjoyable - although 

the 90 minute commute less so! The 

company was taken over two years later 

and I happily accepted redundancy. By 

now I had to take stock of our finances 

and knew that if we ‘tightened our belts’ 

I could afford to give up work in my mid- 

50s and appreciate that I was incredibly 

lucky to be able to do so. I could also play 

a bigger part in looking after my then 2 

year old grandson and found this to be 

great fun and immensely therapeutic ■ 

If you would like to share your patient 

or family member’s story in Pituitary 

Life, please contact pat@pituitary. 

org.uk or write your story and send 

to The Pituitary Foundation, 86 

Colston Street, Bristol, BS1 5BB. 


FREE Will offer 

Following the success of our FREE Will trial we 

are delighted to be able to announce that we have 

extended this offer. Gifts in Wills are a vital source of 

income for The Pituitary Foundation and enable us to be 

there to support future generations of pituitary patients 

in their hour of need. 

What we are offering 

We are offering you, our valued members, a FREE Will writing 

service (worth £100). You would make your Will over the 

telephone, in the comfort and privacy of your own home. 

(As we have committed Members living all over the country 

it would be impossible for a small organisation like us to offer 

a face-to-face service). Compass Wills and Estate Planning are 

specialist estate planners and have over 20 years’ experience 

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Next steps 

If you would like a free Will, please either call or e-mail Compass 

Wills and Estate Planning quoting the reference “Pituitary” as 

soon as possible: 

• Telephone – 01792 893200 Office opening hours: (Mon- 

Fri 9am-5pm) 

• E-mail – alyson.dyer@compass-wills.co.uk ■ 

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This edition is funded by Novartis 

The views expressed by the contributors are not necessarily those of The Pituitary 

Foundation. All information given is general - individual patients can vary and 

specific advice from your medical advisors should always be sought. 

We do not endorse any companies nor their products featured in this edition. 

© 2015 The Pituitary Foundation 

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The Pituitary Foundation 

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