Spotlight on…. pituitary disorders

Dr Mark Pharaoh

The Pituitary Foundation

Pituitary disease is an uncommon illness affecting both sexes and all ages and only rarely does it run in families.

The pituitary is a pea-sized gland sitting centrally under the brain and behind the nasal bridge. It is the master gland of the endocrine system, producing hormones which regulate the thyroid, adrenals, ovaries and testes, lactation and growth from its anterior lobe and aspects of kidney and uterine function from its posterior lobe.

Pituitary illness relates to either hormone over production or under production, pressure effects from an expanding tumour or side effects of surgery, radiotherapy and drug treatment.

Delayed diagnosis

Diagnosis of pituitary problems is rarely rapid or straight-forward. Many patients and relatives tell horror stories involving years of deteriorating health, loss of employment, marital breakdown and lack of sympathetic management by medical advisers.

“Diagnosis of pituitary problems is rarely rapid or straight-forward.”

The reasons for the frequent delays in diagnosis relate to the rarity of the condition (most GPs in the UK will see only one new case in their working life) and the subtle and varied presentations which often mimic common medical conditions in the early stages.

Increased awareness in primary care is one of the main goals of the Foundation, so that GPs might consider the possibility of pituitary disease when, for example, a woman presents with menstrual irregularity, or a man with sexual dysfunction.

Treatment options vary according to the nature of the disease. Large tumours tend to compress the visual pathways causing loss of peripheral vision and early surgery is necessary. Smaller tumours may be active in over producing hormones that result in acromegaly or Cushing’s disease for example. Treatment will often be surgical, resecting the tumour through the nose, and radiotherapy may be necessary for extensive or recurrent tumours. Some tumours (eg. prolactinoma) respond well to long- term oral medication.

Post-operative drug treatment will be necessary in the majority of cases – obviously if the whole gland has been removed and in others who demonstrate hormone deficiency in follow up. Medical surveillance is usually life-long.

Patient anxiety

Many patients suffer anxiety in the early stages of assessment. Their symptoms may have been worsening for months or years and there is little expertise in primary care. There are often delays in secondary care, waiting for appointments, scans and other special investigations. Specialized endocrine nurses are available in most centres but many patients seem to miss out on support and detailed advice.

“Many patients suffer anxiety in the early stages of assessment.”

Recovery after treatment is often complicated and prolonged. Replacement drug regimes require adjustment as do working and emotional lives. Recent work by Dr Sue Jackson in Bristol on the ‘pituitary distress thermometer’ has shown how best to identify these concerns.

The Pituitary Foundation

The Pituitary Foundation was formed to provide support and advice to pituitary patients and their families but we depend on consultants, endocrine nurses and GPs to put people in touch so that we can increase our membership and our worth. We are a small organisation with limited staff and funding, though most pituitary conditions are life-long and intermittent or continuing support may be necessary. Access to accurate and relevant information is available from the Foundation in addition to helpline, endocrine nurse telephone advice and telephone buddy service. There is a national network of local support groups arranging meetings and hosting speakers.

” Medication may be old fashioned, inconvenient or impalatable…”

How we currently work with pharma

There are around 30 pharmaceutical companies producing over 70 different pituitary products in the UK. Pharma already supports the Foundation generously but it seems that future funding will be geared to specific projects or functions rather than grants. We feel that it is important to work with pharma to represent our community within our corporate relations policy and the ABPI code of practice, so we are unable to endorse particular products or divulge members’ personal details. We already share information and update pharma contacts with our new information booklets and members magazines. When possible we talk at pharma meetings and hospital- based conferences on specific pituitary topics. We can promote opportunities for patients to participate in projects or research studies and the prospect of increased ‘project partnership’ is attractive. The Foundation is currently assisting a company with research into improved steroid replacement and we recently recruited patients via our website for a study into a new treatment for diabetes insipidus.

How pharma could better meet patient needs

Although the vast majority of pituitary patients will be taking medication, often in multiples, throughout their lives, their contact with pharma may be limited to a bimonthly pick up from the pharmacy. Medication may be old fashioned, inconvenient or impalatable and drugs for urgent use may not be provided in user-friendly form. Perhaps pharma could finance a trickling down of knowledge and expertise into the community via the existing local support groups, which at times struggle to find a role. Could pharma liaise with patients through the Foundation on email / facebook / twitter to improve the medication experience?

About the author:

Mark Pharaoh is a retired general practitioner and a trustee of the Pituitary Foundation.

He had a pituitary adenoma resected in 1998 and is maintained on full hormone replacement.

Mark Pharaoh trained at St.Georges Medical School in London and worked as a GP in Dorset for 34 years. During that time he did sessional work in the local hospital in cancer care and learning disability.

Since retirement he has maintained medical interests as a trustee with the Pituitary Foundation and a childrens’ hospice charity.

His wife and 2 of his 3 children are also medically qualified. He enjoys travel, reading and gardening.

How can we raise awareness of pituitary disease?