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My life with Pheo

01 September 2023

My symptoms started about 10 years ago with what I thought was just linked to stress: migraines, stress, sickness and about 2 years later, my thick hair starting falling out (I just thought this was stress alopecia linked to a horrible job I had). The sickness improved when I left a job that was causing a lot of stress (the same one I thought caused my hair to fall out).

A couple of months later, the sickness came back and came and went along with hand trembles (which carried on even without the sickness, I thought this was just inherited from my great uncle) over the course of 10 years! There were times I didn’t have it and there were times it lasted 2-3 weeks at a time, but I would only vomit in the morning or evening.

Every day I was scared to eat any more than salad or toast. Sometimes, I would try something else because most of the time that is all I could keep down. Even the things I enjoyed became hell, like working out. When I went out, I had to remember to bring a plastic bag with me, just in case I vomited. I was put onto anti-depressants too (which thankfully now I’m off).

It was not a way to to live, thinking: Will this make me vomit? It also interrupted many work meetings as I had to excuse myself at times to go and throw up. Thankfully for me, in my job as a mentor, most of my clients were understanding and very sympathetic.

At one point, I couldn’t stop throwing up for about 6 days. We thought it was just allergies/ food poisoning that caused it and thought nothing else of it. But what was alarming was my blood pressure, but the hospital thought nothing of it.

When Covid hit, I had periods of sickness but they weren’t alarming enough for us to think it was anything serious. Fast forward 1.5 years, I started throwing up again non-stop. I couldn't even hold down water, my blood pressure sky-rocketed again and my pulse was fast... too fast! My hands were super shaky too. My sugar levels went crazy. As well as sweating loads, me and my anxiety was like nothing I ever experienced before. As well as this, my chin started growing hair and it appeared that my pheo had changed parts of my hair colour for the worse (graying).

"The doctors kept testing me, non-stop blood tests and then urine tests. Deep down I knew it was to do with NF1 but I wasn’t sure what it was."

The doctors first suspected Type 1 diabetes, then a strange type of diabetes. After this, they thought I had had chronic kidney failure (this was from all the blood and urine tests I had). Eventually I was sent for an ultrasound which showed my kidneys being healthy.

But what showed on there, was a mass of 10cm pressing up against my left kidney. It was at that point I was sent to have a CT scan. Finally, answers were coming through. On my CT scan, it showed I did have a mass of 10cm pressing against my left kidney, on the adrenal gland. It wasn’t yet confirmed to be a pheo, it was started. It was either a pheo or another tumour. I was given another set of blood tests that tested for cancer and hormones. I was also given a spit test to test for cortisol and 24 hour urine test to test for the pheo. It was finally confirmed to be a pheo.

Pheo definition: A phaeochromocytoma (fee-o-kroe-moe-sy-TOE-muh) is a rare, usually non-cancerous (benign) tumour that develops in an adrenal gland. You have two adrenal glands — one located at the top of each kidney. The adrenal glands are part of the body's hormone-producing (endocrine) system.

FINALLY I HAD ANSWERS. I was put on to alpha blockers and told to have a high salt diet and 2 weeks later, beta blockers. I had to take alpha and beta blockers together. The alpha blockers were fine but the beta blockers knocked me out. I also had to have a PET CT scan. I finally had my surgery (an adrenalectomy) to remove it and I am one adrenal gland down but I am much happier to see the back of the hell the monster, as I call it now, caused me. I wouldn’t wish this evil tumour onto anyone! During the test and prep I called it my rotten grapefruit as it was the same size of a grapefruit.

Nerve Tumours UK do not normally share anonymous stories but as this covers a fairly unknown condition, related to NF1, we thought it was worth highlighting to help raise awareness.

Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome

Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: Rare NF1-Associated Tumors in Adults

Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis

Simon Freeman, MPhil FRCS, Manchester Royal Infirmary and Salford Royal Hospital

Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

Masterclasses in NF: NF1 Dermatological Manifestations

Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis

David Pang, MD, ChB. Guys and St Thomas' Hospital NHS Trust, London

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches

Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

NF2 Working Together: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

Masterclasses in NF: Surgery in NF2

Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond

Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

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Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK