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 signs that I just didn’t act on.
I think, like a lot of pituitary patients, there was many years of my condition gradually getting worse and feeling more unwell. I was pale, I had no hair growth, I was getting more tired and I interestingly became sort of mute. But strangely, I spent two years knowing that I had problems with my left eye. I was going blind and I did nothing about it. I expressed my concern to my mother, like any mother, she told me get it looked at.
At the opticians, he looked at my eye and he could see a massive tumour, he said ‘there’s nothing wrong with your eye, but you need to go and be seen by a specialist’ He kept his words to himself, not wanting to raise alarm bells.
In 1990, tests showed that I had a large pituitary tumour, something particularly unusual for Prolactinoma.
When they did a blood test my prolactin was 77,000. In a man it is supposed to be around 300 and in a female about 1,000 and more when pregnant.
Back in 1990, before the foundation was formed, pituitary conditions were misunderstood and some of the medications that are available now, unfortunately were not then.
I was sent to Frenchay Hospital in Bristol and I was seen by a neurologist instead of seeing an endocrinologist (more appropriately) and they operated – cranial surgery.
At the time, this surgery was seen as the right option, in hindsight I still wonder whether this was the right approach. My treatment to reduce the tumour was Bromocriptine, a drug I was on for many years. With the advances in medical science, my treatment would be very different now i.e. drugs to reduce my prolactin levels and some form of radiotherapy. But I had cranial surgery and they removed some of the tumour.
At the time I was going through surgery, I was in fact starting to date my now wife, Rachel.
Of course, I woke up looking like Frankenstein!
Post-surgery, I had a few adjustments to get used to, particularly some inconvenient adjustments.
“I was in hospital for 10 days, it just took me ages to be able to go to the toilet. And when I could it was the most wonderful relief. My brain would not operate, things just took time to function again. It took a long time to adjust after to the surgery, and it even still affects me now.
Once out of hospital, I started a plethora of different drug therapies. After many different drug trials and ten years of being patient, I now take hormone replacements, including growth hormone. A complex therapy that I believe has truly improved the quality of my life.
While going through different side effects from different drugs, invasive surgery and the long term impact of having a macro Prolactinoma, I still managed to led a full and active life.
A common thing with Prolactinoma is infertility, and both Rachel & I did go through that. But we want people to know that if anybody wants to talk about infertility, or they are struggling, that we are happy to talk to them.
Rachel & I have dedicated many years to offering support to others in the community. We ran the Taunton Pituitary Support Group, which expanded, to Exeter and then Barnstaple covering a lot of the South West for over 7 years.
We held one meeting, where I presented a cabinet with lots of information. I was so keen to share this with people and impress them. Hardly anyone turned out and I must admit was disappointed. A young girl came to that support group meeting asking about her pituitary condition, even though Prolactinoma is different in women and men, I was just reassuring her and taking a lot of time to hear about her experiences. The evening was not about ‘my’ work, it was about that person with a need. I learnt so much from that evening. Pituitary patients deeply have a need for support and we should to be there for them.
However, as a condition that mainly affects 30 in 100,000 women compared to 10 in 100,000 men. I learnt that Prolactin for women is for lactation and the engagement of the child at birth, but what is prolactin used for in men? My conclusion; to get us in touch with my feminine side!
That difference between men & women with this condition, is worth noting. I had a large tumour, and a lot of women with micro adenomas are smaller. This makes a big difference to a young woman’s life and is a bit more dramatic than perhaps my gradual problem.
Being diagnosed with Prolactinoma for either sex exposes our vulnerabilities. Testosterone is a strong hormone that can cause different emotions for men. We need to work hard to understand the different levels of treatment. Not enough and we feel weak and lethargic, but too much and we can become aggressive and sullen. It’s important to have huge amounts of patience, it will take time and to accept who you are.
Seek others out, who have a similar condition and talk to them. Maybe someone of a similar age or a little bit older. It’s so helpful to talk with others.
Especially as a man with all of your hormones being switched off and then suddenly being switched back on again, you have to be very careful of that. Just try to understand that as your medications are introduced changes are going to occur and you need to cope emotionally well with those changes.
I’ve gone from a person who was really risk averse, ‘I can do anything, I can conquer the world’ to someone who is a lot wiser now and know that I’m vulnerable. You take those drugs away from me and in a short space of time I am extremely unwell.
I may have a pituitary condition and I get very tired most days, but I have still had busy working career, brought up two boys, tried to do as much physical active as I could and tackle life head on. You be surprised what you are quite capable of, even with a limiting condition.
I believe it is so important that no matter what pituitary illnesses throws at you, it’s essential that you fight back, live a life as full as possible and do as much exercise as you are capable of.
I’ve had wonderful support from my family, my mother and father in the early days. And particularly my wife who’s been an absolute angel over the years.” My love and appreciation for her runs deep and we give each other support. It’s been privileged to share my story with you.
If you have been affected by this story and would like more support please contact our Information and Support Helpline.