Nothing beats connecting with someone in-person who is going through a similar experience to you. Despite having friends and family around me when I was diagnosed with Cushing’s disease in 2022, I felt so lonely and scared. Pituitary diseases are so complex that they are difficult to live with, difficult to diagnose, difficult to understand and often really difficult to explain too.
A pituitary patient will find themselves having to be an expert in their own disease to get the treatment and understanding they deserve. This can be exhausting. In 2023 I ran the London Landmarks Half Marathon to raise money for The Pituitary Foundation, to try to pay back the help that I had received from the charity, which was a great source of information for me once I was diagnosed.
Before the race, organisers from the charity met us outside Buckingham Palace, giving me my first opportunity to meet other patients. It gave me such a lift being among people who understood everything I was going through. So when I realised the charity were looking to set up more support groups around the country, I knew I needed to help make this happen.
In 2023 I started the Nottingham Support Group and have met the most wonderful people and formed some lasting friendships. I am now so excited to be starting the Leicester Support Group in July. Sharing information, supporting each other, making connections and just being in the same room as people who ‘get it’ is a wonderful experience. The groups are a great source of information and we get expert speakers in from time to time to answer questions too.
I love being an ambassador for The Pituitary Foundation also, and am often doing crazy challenges to raise money and awareness for them, such as completing a marathon last month. This is my second time having Cushing’s disease and whilst the disease doesn’t get any easier, coping with it does now that I have such a fantastic support network. Alone we are rare, together we are strong.
The Leicester support group will be meeting for the first time in July 2025. To find out more about the group, please click here.
As we get ready to launching our new support group in Sussex, we hear from the new support group leader Nicky about her pituitary journey so far.
"So much has changed in the Health Service since my pituitary condition was first diagnosed. My specialist nurses have long gone, consultant’s time is precious, and G.P. surgeries have changed. So, who is there to ask for advice, information, coping strategies etc? The Pituitary Foundation is the keystone. I am still finding out things I never knew. I have had huge support from the Pituitary Foundation in recent years, and having become a member I realised that there was no support group in Sussex (or Kent) at the moment. Having attended an excellent support group in London recently, I decided to ask if I could set up a group in Sussex, and thanks to ongoing support from the P.F. and a local healthcare centre, it is on its way.
Looking back, my endocrine issues were beginning to emerge in my twenties, if not earlier. Following Marie Stopes advice to have a contraceptive holiday every two years, I became aware of the reduction in regular periods, until I had had none for two years. I was referred to a gynaecologist who prescribed a medication (bromocriptine), sent me for annual blood tests and my first daughter was born in 1981. After she was born I had an annual X-ray of my head.
In order to have my second daughter, I again received some medication. I became ill during the pregnancy, feeling very nauseous, and with long periods of headaches, which I assumed were inherited from a father with migraine. I had been signed off by the gynaecologist. After my daughter was born, the symptoms continued, together with awful breast engorgement. I went to see my G.P., who told me I did not have mastitis, and I should go home to feed my daughter. In desperation I called the breast-feeding councillor for my local group of the National Childbirth Trust. She was out, but her husband, a doctor (but not an endocrinologist), advised me to get an urgent referral to my former gynaecologist. This time I went to see a part-time female GP, who referred me immediately, after a blood test.
It transpired that the tumour on my pituitary had not been picked up on the last two annual X-rays, because my blood tests were not high enough to suggest a tumour, or so I was told after my referral to St. Bartholomew’s hospital in 1982. I was lucky enough to have an excellent consultant, who had been behind the research into pituitary tumours. One of the first things he told me was that my daughter and myself had been lucky to survive. After a few of years trying various things to monitor and reduce the tumour, a decision was made to remove the tumour, followed by radiotherapy, in 1987. Being in Barts hospital during the Great Storm, was another experience I will never forget!
Nothing much changed for the first ten years after the treatment. I had no side effects. The effects of the type of radiotherapy I had received, were not yet known. However, I was lucky to only need one surgical intervention. My thyroid levels dropped, so I began my first medication. A carefully monitored HRT was introduced. I suffered a lot with back pain, so when the opportunity came to take part in the clinical trials for Genotropin, I was keen to see if I made a difference.
I lost my first consultant to retirement, and have lost the specialist nurse, who was so good at answering questions. She told me about The Pituitary Foundation.
Despite my GP’s concerns, I was taken off HRT in my late forties, following a German report linking it to breast cancer. As the research was linked to people my current age, my GP was skeptical of its significance. The HRT was replaced by Alendronic acid and a calcium supplement.
In 2006, off work with a stress-related illness, my specialist nurse suggested my cortisol levels might be low. They had plummeted, so I began taking hydrocortisone which came with the diagnosis of hypopituitarism and secondary adrenal insufficiency. As the steroid made me feel so much better, I did not really think about the adrenal insufficiency until I became unwell. A lovely GP administered the emergency injection on this occasion, whilst telling my needle-phobic husband how to do it next time.
I was still ignorant about the severity of adrenal insufficiency, knew no warning signs, and failed to take my emergency kit quite frequently, until a serious attack occurred: I foolishly followed the advice of a neighbour regarding an acupuncturist who could cure tinnitus (how could I have believed this?!). I remember nausea as the acupuncturist stabbed my neck and face with needles, then left me. I woke up to find myself lying sideways, no longer upright, on the couch, with my head dangling down. I presume the latter brought me out of the faint. I was violently sick several times, felt freezing cold and had difficulty calling for help. I could only groan loudly. My husband arrived, could not find my medication in my pocket and tried to call an ambulance, as we had arrived by bus. Once the acupuncturist had been paid, she let us take a taxi to the nearby hospital. My request to have an emergency injection was denied, but the monitoring and whatever was going into my veins worked. I learned to take the condition seriously, and carry my emergency pack. I will also attend a Pituitary Foundation session related to adrenal insufficiency in the coming months.
Covid filled me with fear as I knew my immune system was weak, but had no idea what to do, and no consultant or GP was available. I was super careful until I got Covid in December 2022. No anti-viral appeared, and GP declined to follow 111 advice on day 5, to make an urgent referral to the anti-viral service. Fortunately, following a call to 111, a doctor from a small local hospital prescribed an anti-biotic to counteract the chest infection which began on day two. 111 referred me to A&E. I was given a seat away from the other patients. I was thoroughly triaged, but by now I had begun to do my own research about how much I could increase the hydrocortisone to counteract the symptoms. I had forgotten about the Pituitary Foundation’s support line! Having more than quadrupled my dose, I then began to run out of my two month’s supply. The surgery initially would not prescribe more, as I had recently been given a prescription, but Christmas was coming up! It took a formal complaint, and several more calls until a GP who understood, finally gave me more hydrocortisone and let me have an additional hydrocortisone ‘emergency’ prescription item should I need it. Then the issue of how to reduce it after 12 days arose. Fortunately, I remembered the Pituitary Foundation, who gave me clear advice.
Recently, I had to have a molar removed in my lower jaw, which concerned me after nearly 20 years of taking Alendronic Acid. Its partner in the gum above, had been carefully removed at a hospital some years ago, but my dentist assured me that he could remove it. I tried to contact the hospital, but referrals nowadays seem limited, so I again contacted the Pituitary Foundation for medication advice before and after the procedure. So far, so good, but early days yet.
After nearly a half a century I am still here and feeling better than before my diagnosis, despite weight gain since some medication was altered. I can still cycle, walk and enjoy life."
Find out more about the Sussex support group.