IT'S TINY, only the size of a pea, and many people don't even know it's there -- but its effect on the body is colossal. If your pituitary gland is out of sorts, chances are, you're in trouble -- yet many people haven't even heard of this tiny gland at the base of the brain, and those who have rarely grasp just how important it is.
A problem with the pituitary gland can cause serious disruption in the body, affecting everything from growth to fertility, vision and balance.
"The pituitary gland controls the functions of the thyroid, the adrenal gland, the testicles and the ovaries and it produces growth hormone which controls children's growth and metabolism in adults. If the pituitary malfunctions, every other gland in the body will possibly malfunction too."
Thirty-five-year Jay Duffy still doesn't know quite how long his pituitary gland had been acting up, but his feet increased by a full shoe size in his twenties.
He'd also noticed that his forehead and jaw were protruding, his teeth no longer seemed to sit properly and that his lips seemed unusually large.
"I was never a petite kid -- I was always a big lad," recalls the six-foot Dubliner. In 2009 he had surgery to have his nose re-set -- he'd broken it as a teenager but hadn't realised it until he consulted a doctor about breathing problems.
During the operation the surgeon noticed Jay had possible symptoms of Acromegaly, sometimes referred to as Gigantism -- a condition involving the over-production of growth hormone usually caused by a tumour on the pituitary gland, which leads to excessive growth of parts of the body.
"I had a large tongue and a protruding jaw. The bones of my forehead seemed to protrude -- this is called frontal bossing," recalls Jay, from Baldoyle.
His hands and feet were noticeably larger than normal, and he had Carpal Tunnel Syndrome, where the joints seize up -- sometimes, he recalls, he couldn't open his hands.
"My jaw was protruding and I was developing an overbite. My teeth didn't sit properly. My hands, feet and lips were bigger than normal."
The surgeon referred Jay for an MRI scan which revealed that he had a tumour on his pituitary gland: "The tumour was 3cm in diameter. It was very big -- probably bigger than the gland."
In March 2010, Jay, then a 33-year-old mature student on a BA Communications Studies programme at Dublin City University, was diagnosed with Acromegaly.
After researching the condition he got a nasty shock.
"Undiagnosed and untreated, Acromegaly can leave you with a deteriorating quality of life, and on average life expectancy of up to your fifties," he says.
Jay had an operation in May 2010 -- the day after his final exams -- but follow-up tests showed the growth hormone levels were still too high.
A second operation took place that August, and this was successful. Jay noticed an improvement almost immediately: "The best way to describe it is that my whole body reduced in size. I could see a difference within hours of the operation.
"When I woke up after the operation, my jaw wasn't protruding as much. A year later I can still see improvements.
"My hands, fingers, toes, tongue have all decreased in size. I don't have sleep apnoea any more. I don't have Carpal Tunnel Syndrome. I don't have any symptoms," says Jay, who made a television documentary about his experience.
He believes there needs to be more awareness of Acromegaly, both amongst the public and amongst the medical profession.
"It is believed that between four and six people in every million are diagnosed with Acromegaly but the problem is that it tends to go undiagnosed -- so it's felt that as a result, it may be a lot more common than that."
Yet despite the severity of conditions like Jay's, Ireland does not have a dedicated pituitary unit.
There are two main pituitary centres in Ireland, at Beaumont Hospital and at Cork University Hospital, but neither have official recognition.
What Ireland really needs, Professor Thompson believes, is a two-site national dedicated pituitary treatment unit with a multi-disciplinary team which includes a pituitary endocrinologist, neurosurgeons, neuro-radiologists, neuro-pathologists and radiotherapists.
"The recommendations are that patients with pituitary disease, especially pituitary tumours, should be looked after in centres where these components are available," he argues.
Such recognition would not require a lot of extra funding, he believes.
While the Health Service Executive and the College of Physicians has set up major programmes for the management of disease like diabetes, heart failure and stroke, there is no equivalent programme for pituitary disease, points out Domhnall O Halloran, Consultant Endocrinologist at Cork University Hospital and president of the Irish Endocrine Society.
Pituitary abnormalities are not uncommon, he says -- one in four or one in five people have abnormalities of some kind, though the vast majority of these would not be significant.
However, he warns, significant abnormalities of the pituitary are complex.
Although Beaumont Hospital alone cares for a staggering 1,500 to 1,600 patients, it recently lost some of the beds used for pituitary patients -- they were closed as part of a general shutdown of some wards in the hospital.
"Our ability to properly assess and manage patients with this complex and life-long condition has been compromised by the closure," says Professor Thompson.
"Our ability to properly assess patients pre-operatively before the pituitary tumour is operated on, has been affected by the closure of the beds and also our ability to re-assess them after surgery to ensure hormone production by the gland is still intact.
"What we need is a designated unit where we can continue the high standard of care that has previously been given.
"In my own practice, we look after patients from all over the country.
"Between Beaumont and Cork we provide a national service and if either of these units is compromised, it compromises our ability as a nation to look after people with this disease.
"We don't have a designated unit where our patients can come and not be scattered around the hospital wherever there is a bed," he says, pointing out that the unit in Beaumont has developed an international reputation for its work on the onset of pituitary disease following head injury.
"Beaumont Hospital was one of the pioneers in recognising this problem and we are among the world leaders in our field. We are working hard with the hospital to approach the HSE to give the recognition that Beaumont needs to effectively provide care to these patients and our chief executive officer recognises the need for this to happen," he adds.
The need for a nationally recognised dedicated treatment unit is underlined by the concern that a malfunctioning pituitary gland can sometimes be overlooked -- even though it may be causing significant problems.
"It's not as well recognised as other diseases," explains Domhnall O Halloran. "Patients present in different ways -- for example, to eye services with visual problems, to fertility services with reproductive problems to paediatricians with growth problems.
"The influence of the pituitary gland is protean through the body and may sometimes be overlooked."
His concerns are echoed by Brian Lawler of the Irish branch of the Pituitary Foundation.
"The challenge with pituitary conditions is that symptoms are wide-ranging and non-specific. This can mean that patients spend many years attending doctors and attempting to get a diagnosis for their condition. This can be puzzling and distressing for patients and their families. What we require is more awareness of disorders of the pituitary gland so symptoms can be recognised more quickly and patients get an early diagnosis."
•The Irish branch of the Pituitary Foundation can be contacted on Tel: 01 2831060. Visit www.pituitary.org.uk for information on pituitary disorders.
•Pituitary Awareness Week is being held by the Irish branch of the UK-based Pituitary Foundation from October 2-8 to heighten awareness of the symptoms of pituitary disorder and promote early diagnosis of the condition.
Health & Living