Patient Stories

A mum’s story of her 4 year old – pituitary awareness

Emma Heap has shared her story of dealing with comments from strangers about her 4 year old daughter, Emily, who is a pituitary patient.

A Parent’s DI Story #NoNeedToDI

We experienced problems when my son was readmitted to an adult ward following complications after pituitary surgery.

A patient with two rare diseases – Dan’s story

The Pituitary Foundation is supporting Rare Disease Day to help raise awareness about rare diseases and their impact on patients' lives.

A rugby player’s pituitary journey

My life was pretty simple.

Acromegaly autobiography – Me, Myself and Eye

Pituitary patient Dan Jeffries's rye take on his journey growing up as a young man in Bristol and Weston-Super Mare.

Andrew’s Story: macro adenoma

In March 2017, I was diagnosed with an extremely rare four cm wide macro adenoma (benign) tumour on my pituitary gland.

Ann’s acromegaly story – Volunteers’ week

I became a volunteer with The Pituitary Foundation 2 years ago when they were looking for Helpline Operators for the Support Helpline.

Annie’s acromegaly story – Volunteers’ week

After having had constant headaches and other symptoms for about 20 plus years, I was finally diagnosed with Acromegaly at St Bartholomew’s Hospital in London on the 24th December 1993 - Not the best Christmas present I have ever had.

Aurora and Jenna’s Story

Aurora's journey started at just 6-years-old

Catherine’s Story: How I adapted my working life with a persistent Pituitary Tumour and Addison’s disease

Mine is aggressive, so very very rare.

Chris’s story with macro prolactinoma and setting up a business

What started with a little lump in my chest, took me on a strange journey through treatment abroad, a macro prolactinoma diagnosis, and even starting my own businesses.

Christina’s Story: pituitary apoplexy

“Though nobody can go back and make a new beginning…..Anyone can start over and make a new ending.” Chico Xavier

Christine’s story – Acromegaly

March 2003. I had just given birth to my second child age 32. I had been ill throughout the pregnancy, crippled by headaches, raging high blood pressure, plus I gained a whopping 4 stone.

Claire’s DI Story #NoNeedToDI

Patient with Diabetes Insipidus

COVID-19 and Hypopituitarism: Ian’s Story

It started innocuously enough on March 13th, just a tickly cough.

Cushing’s Awareness Day – Emily’s Story

Our next story for Cushing's Awareness Day comes from Emily.

Cushing’s Awareness Day – Minal’s Story

For Cushing’s Awareness Day we want to share this story of Minal.

Dominika’s pituitary macroadenoma story – Volunteers’ week

It all started with suspicious symptoms

Eddie’s story – hypothyroidism and head injury

I was encouraged by Peter Lapsley’s confirmation that Patient Journeys do indeed help doctors to reach the correct diagnosis more quickly, and wish to offer my own experience in the hope of furthering that purpose.

Emily’s Story: AVP-Deficiency

For many years I’ve been unwell and as a young woman I’ve faced many inequalities when accessing healthcare.

Emily’s macro adenoma pituitary journey

I knew I wasn’t right, I can’t put my finger on exactly what it was but it’s strange, you just know. Yes, life was stressful and work was challenging but I just didn’t feel my bubbly self. I felt like I was empty and had no means of re-filling. Nights out would take days to […]

Emily’s Story – Prolactinoma

Hi, my name is Emily and I was diagnosed with a Prolactinoma nearly 9 years ago, when I was 19 years old.

Emma’s Story: macro prolactinoma

At this challenging time we are sharing positive stories to brighten your day and bring hope! Here is Emma's story...

Eric’s Story with Acromegaly

It started in the late 1970s. I was finding fault with every tiny thing and felt very irritable – a lot!

Esther Florence Talk about Cushings

Esther recently gave a fascinating talk at an event we held in London where she gave an insight into her journey as a Cushings patient and how The Pituitary Foundation helped her.

Esther’s Cushing’s Story

At the end of Cushing's Awareness Month, here is Esther's story.

Francis – craniopharyngioma diagnosis story

In 1984, as I entered Rome Free Academy high school in my hometown of Rome, New York, the feeling that I was different from other kids started to intensify.

Gill’s Cushings story

LIVING WITH SOMETHING YOU DON’T KNOW YOU’VE GOT!!

Gordon’s story: The long road to diagnosis

These are my recollections of hospital life in the 1950s.

Hannah’s Cushing’s Story

New Zealand pituitary patient Hannah spent 8 years fighting for her Cushing's diagnosis.

Hydrocortisone regime – Gail’s story

I’d like to tell readers about how attending a meeting entitled ‘Getting Steroid Replacement Right & Minimising the Side Effects’ has changed my life.

Ian’s story: Recovering from Apoplexy

I suffered a pituitary apoplexy. This sudden bleed into the pituitary gland fundamentally changed my way of being.

International Women’s Day – Shelley’s journey to get diagnosed with Cushing’s

This International Women's Day we want to raise awareness of pituitary conditions, so that everyone gets a quicker diagnosis, especially taking into considering the issues that women face.

Jackie’s story – Cyber knife

In January, I experienced Cyber Knife and wanted to tell my story not for negatives but to help others.

Jim’s story – macro adenoma diagnosed by my optician

During 2012 I became increasingly aware of a deterioration in my general health.

Joy’s DI Story #NoNeedToDI

I was diagnosed with panhypopituitarism on Christmas Eve 1997.

Joy’s story with AVPD (DI) Volunteers’ week

I was diagnosed on Christmas Eve 1997.

Katy’s Story: My Pituitary Story

My name is Katy, I am 36 years old and have a daughter of 2 years old. When I first started having symptoms, my daughter was 8 months old, and put a lot of these symptoms down to my body adjusting after pregnancy. However, after a while I knew something wasn’t right. In January 2022, […]

Kate’s Story: A parent of a child with hypopituitarism

I was 19 when I gave birth to my son Isaac. Despite all seeming to be well, it soon became apparent that something was failing within his body.

Kieley’s story – symptoms during pregnancy

In June 2014, we found out that we were having a baby. We couldn't have been happier.

Kiko Matthews: A life with Cushing’s

Not many people have pituitary surgery for Cushing’s disease just months before rowing unaided across the Atlantic. Meet the woman who did.

Laura’s story – Acromegaly and Pan-hypopituitarism

Ten years ago I was diagnosed with a tumour on my pituitary gland that was causing a disease called acromegaly.

Lawrie’s story – journey of pituitary tumour diagnosis

My name is Lawrie. I am 70 and I have been married to Brenda for nearly 50 years.

Living with Acromegaly – Rachel & Carolyn

Patients Rachel and Carolyn share their personal experiences of living with Acromegaly in the below video.

Living with Acromegaly – Steve & Lauren

Patients Steve and Lauren share their personal experiences of living with Acromegaly in the below video.

Living with Prolactinoma: Jessica’s story

When I was 18 years old, I started to become ill. I was being sick, had weird leaking from my breasts, experienced severe headaches and generally feeling very tired, faint and dizzy.

Lucy Sewill: Living with Addison’s after a lifetime of Cushing’s

After a lifetime of unexplained health problems, a horse may have saved Lucy Sewill’s life

Matt & Becky – A pituitary love story!

I was 25 when my periods started to become very irregular.

Michael’s patient story – macro prolactinoma

I was diagnosed with a condition called macro prolactinoma, a benign tumour on the pituitary gland, in February 2017.

Michael’s story – Acromegaly

A normal life disrupted by acromegaly, but managed effectively. Michael’s story.

Michael’s story – pituitary tumour affected my sight

Late last year I became aware that I had developed blurred vision in my left eye.

Mick’s patient story – Acromegaly

Acromegaly was first unexpectedly recognised by an Iraqi urologist during a consultation about prostatitis, in a private hospital in Dubai in early February 2008.

Mike’s story – 25 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.

Molly’s Story – #NoNeedToDI

I have a rare form of hereditary central diabetes insipidus. I was diagnosed with DI at 5 years old after years of my mum pushing for tests to be done.

My brother Charlie and how we lost him to DI.

Warning: Distressing content. This is one of the devastating stories that is powering our #NoNeedToDI campaign

My Dad, Douglas’s Story: Dad and Desmopressin!

Dad was diagnosed with a tumour on his pituitary gland, following a severe headache which we initially thought may be a bad migraine.

Neil’s story – Kallmann’s Syndrome

When I Discovered the Name of the Disease That Halted My Puberty.

Pat’s Story with AVPD (DI)

Pat McBride is the Head of Patient and Family Services at The Foundation and editor of our members' magazine Pituitary Life.

Pat’s Story – a carer’s review 12 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!

Peter’s story – My Addisonian crisis

Be warned, an addisonian crisis can creep up on you without you noticing!

Prolactinoma – from the view of a positive pituitary family!

I was 30 and returning from working as a nurse at Cairns Base Hospital in north Queensland, embarking on a four month overland trek back to U.K., through countries that would be difficult to venture in current times.

Prolactinoma: a carer’s story – 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!

Rare Disease Day Stories Victoria – Living with a Pituitary Macroadenoma

I discovered I had a pituitary tumour in March 2021. I was prescribed Levothyroxine for an underactive thyroid in 2019.

Risa’s story: Living life to its fullest with Acromegaly

My name is Risa and I have Acromegaly. It was October of 2018, as I nervously awaited the results of my brain MRI. I remember utter disbelief washing over me as my Endocrinologist informed me that I had a large tumour on my Pituitary Gland and furthermore, it was causing a rare disease with a […]

Robert’s Story of Adrenal insuffiency and Traumatic Brain Injury related hypopituitarism

I had a good upbringing but my dad developed a mental health problem and lost his job when I was very young.

Russell’s story – adrenal crisis experience

I awoke on the Thursday morning not feeling that great!

Ruth’s story – Have your feet got bigger?

The question came in July 2004 from the consultant who had been trying to treat my high blood glucose levels and sudden very high blood pressure. I didn't know that adult feet do not continue to grow.

Sharon’s Story – Pituitary Awareness Month Hypopituitarism

October is not only Black History Month but also Pituitary Awareness Month. It’s incredibly difficult to open up about this but I’m hoping to bring awareness to pituitary conditions. 11 years ago I was diagnosed with Hypopituitarism and it changed my life.

Shorna – The Untold Story: Hyperprolactinaemia

This is me Shorna, and I am 21 years old. I live in small village in Bangladesh.

Sian’s story – Cushing’s

It begins in about 2007. I had developed stretch marks on my abdomen, legs, and arms, I was getting a little ‘round’ in the middle and I was just not feeling well.

Steve’s acromegaly story – Volunteers’ week

I was diagnosed with acromegaly in 1987 and had transsphenoidal surgery in early 1988.

Tara Palmer-Tomkinson pituitary tumour confirmed by family

Tara Palmer-Tomkinson’s family have confirmed that her death was not the result of a brain tumour and was not caused by a pituitary condition.

Teagan’s Story: Prolactinoma and University

Teagan was diagnosed with Prolactinoma in October 2021, at just 19. She was alone in her university room, 250 miles away from home. Teagan is a student at the University of Exeter. She noticed her migraines getting more and more painful. She originally put it down to majority of her studies being online due to […]

Time to Heal: A blog by one of our volunteers

My pituitary journey began back in 2008 when I became very unwell.

Troy’s pituitary story

I’m not sure where to begin, so I’ll cover the highlights leading up to the loss of my pituitary gland.

Volunteers’ Week – David’s Story with Empty SELLA Syndrome

David is joint Area Co-ordinator for our Birmingham and West Midlands LSG

Volunteers’ Week: Jenifer’s Story of prolactinoma diagnosis

Hi, I’m Jenifer and I recently became a Trustee of The Pituitary Foundation.

Volunteers’ Week: John’s Story with Hypopituitarism

John is joint Area Co-ordinator for our Oxford LSG with his wife Cathy.

Volunteers’ Week: Martha’s Story with Cushings

Martha is one of our Helpline Operators who answer calls on our Patient Support and Information Helpline

Volunteers’ Week: Martin’s Story of craniopharyngioma diagnosis

Martin is Area Coordinator of the Newcastle Local Support Group

Volunteers’ Week: Pauline’s Story with Cushings

Pauline is the Area Coordinator for our online Cushing's Support Group

Why I wanted to write ‘Living with Hypopituitarism and other things that happened to come along’

My story starts way back in 1972 when I awoke one morning with a headache to end all headaches.

AR’s Story – A craniopharyngioma whilst being in school

AR shares his story of being diagnosed with a craniopharyngioma during school, and managing exams during treatment.

Gary’s Story: My Prolactinoma Journey

I was diagnosed with macro Prolactinoma at the age of 31. Now at 65-years-old, I am an avid cyclist which has inspired my wife and myself to take on the famous Land’s End to John O’Groats route raising over £1700 for The Pituitary Foundation. Reflecting on the fact that years before my diagnosis, there were […]

Howard’s Story: Spotlight On Prolactinoma

Howard Pearce has been a member and volunteer with The Pituitary Foundation for some time, particularly as one of our telephone buddies. He has been a part of The Foundation since his diagnosis of prolactinoma at the age of 49. Now 76, Howard shares the importance of supporting others with pituitary conditions. “I think the […]

Isobel’s Story: Hamish the Helper Dog

I was diagnosed with Adrenal Insufficiency in 2014 after repeatedly ending up in A&E with what appeared to be an unusual asthma attack and by complete chance after a 2-week asthma ward admission, a consultant ran a Synacthen test and diagnosed me with Secondary Adrenal Insufficiency. Because the treatment for asthma attacks is the use […]

Maci’s story: Managing life and prolactinoma

Maci share's her story of balancing a busy life and having a pituitary tumour.

Nadine’s story: Living with a physical disability and Cushing’s disease

Nadine was diagnosed with Cushing’s disease in 2003, after going in for an operation to fix a broken hip. When doctors noticed how different she looked to her sister, they started doing some tests. Nadine experienced a range of Cushing’s symptoms before her diagnosis: “my face was starting to balloon. I put on weight rapidly. […]

Rare Disease Day 2023 – Lucy’s story

Lucy share's her story of living with a prolactinoma throughout her teenage years.

Amy’s story – A 10 hour operation

Amy shares her story of losing sight in her eye due to a pituitary tumour, her 10 hour long surgery and looks to the future.

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