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 signs go right back to when I was a teenager. It certainly affected my personality and things like that.

When you start wandering around with almost as many female hormones as you’ve got male hormones, it’s going to affect you.”

Howard recalls being reclusive as a young man, and known as the ‘timid one’ to others. The hormone imbalance caused by prolactinoma can trigger erratic mood swings and a loss of emotional control.

“Later in life it had an effect on the things that happened to me and also later on my mood. It was to the extent that I went to the doctors and he gave me antidepressants.

Which was of course not the correct pills that I needed. But he probably had never seen a Prolactinoma in his life.”

And neither had Howard heard of prolactin before, but after an injury caused alarm bells, he did some digging.

“When I injured my foot and had an x-ray, a sharp-eyed radiographer said ‘how old is this bloke? He’s got the bones of a 90-year-old’ I had a lot of osteoporosis at 48.

So, I wrote to the [Royal] Osteoporosis Society to find out why someone so young would have Osteoporosis, and one of the leaflets they sent me said if your hormones are not working and are low on testosterone.”

Putting two and two together, with low mood and osteoporosis at a young age, that’s when Howard decided to go back to his doctor and make a specific request.

“I saw the doctor and asked if I could have my testosterone levels checked. That’s when his eyes lit up and he wrote it down and said ‘you better have these other hormones checked while you’re at it’ and he put down all the pituitary hormones.

And of course, guess what the results came back looking like?”

Howard had been diagnosed with a prolactinoma.

That’s when Howard finally had answers, and was finally placed on the right pills of cabergoline and replacement hormones.

Though, back in 2013, Howard’s daughter was also diagnosed with prolactinoma.

“I immediately rang up the [Pituitary Foundation’s] helpline and asked if anyone was doing genetic research, and there was. So, I had a DNA test to see if I had any of the genes that caused pituitary problems.

I don’t have any of the genes they’ve discovered so far. We know there are more out there and it seems I probably have one of those.”

Despite having an inconclusive answer, Howard feels that with both he and his daughter being diagnosed with prolactinoma, there is some explanation to his condition. It is also what sparked the question of ‘what if?’

As a condition that is more prevalent in women aged 25 to 34 years old, Howard has only met one of other man with Prolactinoma.

“It’s interesting to meet someone else who had a similar situation to me. I do feel an affinity with anyone who’s got something similar, which I suppose is only to be expected.”

This is what lead Howard to joining volunteer roles with The Pituitary Foundation and attending his local support group.

“Reassurance is very important.”

A Prolactinoma diagnosis can cause, not just health related issues, but physical changes and psychological impacts.

“The one thing people want to know is that they’re still going to be here for Christmas, and a lot of the men ask ‘when will I look normal again?’

I guess what they really mean is ‘when am I not going to need a bra?’ It just takes patience and reassurance.”

After years of treatment, Howard no longer takes cabergoline or any replacement hormones.

“I don’t take that much anymore because I don’t really have a pituitary anymore.

I’ve just got a stalk. And that actually works better than my pituitary ever did.”

If you have been affected by this story and would like more support please contact our Information and Support Helpline.