Pituitary News, Issue 12 - Summer 1999.

Pituitary tumours are extremely uncommon with an incidence of 20-30 new patients per million of the population per year. The average GP will be involved in the diagnosis of perhaps two new cases over their entire medical career!

Dr Ian Barrow, GP

I have had an interest in pituitary disorders since medical college days. I had good teachers in Professors Wass and Besser. Pituitary tumours, however, are extremely uncommon with an incidence of 20-30 new patients per million of the population per year. The average GP will be involved in the diagnosis of perhaps two new cases over their entire medical career!

In my own practice of 12,500 patients, over 12 years the presentations have often mimicked other conditions. Several patients had attended their opticians, who then requested an ophthalmological opinion. By the time this occurred the field defects had become quite blatant (both had non-secreting tumours). One patient became acutely suicidal and required admission to a psychiatric hospital (final diagnosis Cushing's disease). Another had vague seizures. Several more have joined with an established diagnosis. I have run screening blood tests, particularly for impotence and absent periods, but have yet to find a pituitary cause for these relatively common disorders. The message therefore is "the diagnosis is not easy and may well be delayed - please don't shoot the GP".

The local hospital may not be the best place for the diagnosis to be confirmed, as expertise for unusual investigations may be lacking. My patients travel at least 30 miles to see a specialist. In the long run this saves duplication of resources.

A diagnosis of a Pituitary tumour is often quite devastating for both patient and relatives. Most people don't even know they have a Pituitary gland. An anatomy lesson in non-medical language, with lots of time for questions, is necessary for all concerned. There is lots to take in and repeated checks on understanding are required. Fears of cancer, for example need to be dispelled, particularly since Radiotherapy may have been mentioned. There may be a great reluctance to undergo surgery and the GP may be turned to by the consultant for support, explanation and sometimes gentle persuasion.

Drug treatment is complicated and keeps changing with the introduction of new products. GPs are not likely to be up to date with drugs such as cabergoline or quinagolide and will rely on detailed instructions from the consultant in charge. Patients, of course, obtain their repeat prescriptions from their own GP and there may be reluctance to issue repeats. In part this is on the advice of the medical defence organisations, as if anything goes wrong it is the doctor who signs who is liable. Shared-care protocols may help in this respect and also help to educate the GP. I have encountered refusal to issue prescriptions for Growth hormone on the basis that "it was an experimental treatment in adults". I suspect it had more to do with it being a high-cost treatment and its potential effect on the practice drug budget. Hopefully it will become more readily available as doctors recognise the increased risk of heart disease that comes with adult growth hormone deficiency. My one patient who learnt to inject himself daily became less tired, stronger, lost his excessive weight and managed to stop antidepressants, which he had taken for a mixture of anxiety and depression for 20 years. I have, however, been unable to persuade others to try the treatment, even though I think they might benefit.

Dont't forget that if you need certain pituitary replacement drugs, then you are eligible for free prescriptions for all your drugs. This will lighten your financial burden, but the exemption forms are often forgotten.

I have found that, even when the raised hormone levels of Acromegaly, Cushing's disease or Hyperprolactinaemia have been lowered to normal, or when those who have pituitary insufficiency have been adequately replaced, patients sometimes do not feel well in themselves. Physical appearances may have changed profoundly, with the result that patients may feel ugly or 'freakish'. Weight gain may have been considerable and is difficult to lose. Relationships may be strained by impotence problems or difficulties with fertility. There may be financial problems if there has been a long period of sick leave from work. Weakness and tiredness are a particular problem for someone doing heavy manual work. Visual field defects may mean driving is difficult and HGV/PSV licences may be revoked with the consequent loss of employment.

Depression seems to feature frequently. One might be tempted to say "it's not surprising" given that these are chronic conditions which have wide ranging effects. My own experience is that antidepressants have been very helpful whenever tried. Proper therapeutic doses need to be used for at least six months combined with talking through individuals' and relatives' fears and worries.

I must confess that, until I was asked to write this article, I knew nothing about The Pituitary Foundation and its work. A Pituitary Disease Factfile aimed at General Practitioners is due for release very soon and should assist us in the diagnosis and after-care of our patients. It will, at the very least, refresh our memories about these uncommon diseases and raise their profile. It is estimated that there are between 40,000 and 70,000 pituitary patients in the UK. Six thousand are on the Foundation's database. Pituitary diseases may be uncommon, but clearly there are many interested doctors and a very supportive self-help network. By pooling and sharing our experiences and expertise between patients, carers and health professionals all will benefit. If you find the work of the Foundation helpful, then mention its existence to your GP and therefore spread the word.