Pituitary News, Issue 22 - Winter 2002.

Being ill upsets us. The surprise would be if this were not true. This statement is particularly true of certain hormonal diseases, with the best (or worst) example being Cushing's syndrome.

Dr Peter White
Honorary Consultant Psychiatrist, St Bartholomew's & The London School of Medicine, Queen Mary, University of London

What is it about being ill that makes us upset? The uncertainty of ill health causes fear. People are naturally apprehensive, suffering from symptoms and signs before a diagnosis is made. Because of the often insidious onset and initially non-specific symptoms, the diagnosis of pituitary disease can be made many years after the onset of ill health. There is further uncertainty when the diagnosis is made; the unknown nature of the illness, compounded by the possible threat of surgery or Radiotherapy. On being told that they have Pituitary tumour, people often catastrophise and imagine the worst. Most people equate tumours with cancer and fear that they may die from their illness. People with some pituitary tumours may also have the added threat of having their vision affected, if the tumour is growing and pressing on the nerves that link the eye to the brain.

More reasons for being upset include the losses suffered by a person with pituitary disease. There are several losses that are possible. A person may be unable to work or unable to fulfil their normal social roles in life. Intimate relationships may be affected by a loss of sexual drive. Loss of self-esteem may be linked to a change in body shape, having a negative effect on body image. This can particularly affect a person with Acromegaly, with a coarsening of facial features and growth of the jaw and nose.

People with pituitary disease are sometimes surprised at the strength of their anger, when they are told the diagnosis. This is usually noticed most by those close to them, their carers, and those trying to help them. Anger can also be directed inwardly whereby people blame themselves for being ill. Anger and irritability can be exacerbated by the beliefs a person has about the causes of their illness. We all try and figure out why we are ill, particularly when there is no clear medical understanding of aetiology (the cause of an illness). It's quite understandable to feel angry that a diagnosis has not been made for perhaps several years with consequent untreated ill health, which might have had a dramatic effect on the quality of one's life. A diagnosis can seem obvious in retrospect and a person can feel angry with their doctors and others for "missing" the diagnosis, particularly when a significant change of body shape or function has occurred.

Fear, anger, and low mood can be a normal reaction to the adversity of suffering from pituitary disease. These emotions are commonly felt by anyone coming to terms with a life difficulty. They are usually felt in the second stage of coping. The first stage may involve a denial of the facts and an inability to take things in. The emotional second stage follows closely. People notice that their moods are unstable and swing widely from one emotion to another, sometimes without any obvious reason or trigger. The third stage of coping involves coming to terms with the loss and moving onwards. This is called resolution. The journey of coming to terms with pituitary disease is never straightforward or linear. People notice that they may jump stages and go backwards as well as forwards in this emotional journey. It's important to remember that this is a normal and healthy reaction to being ill, receiving a diagnosis, and having treatment.

Excessive greiving

Sometimes our emotional reactions are excessive or prolonged, affecting our ability to function normally, or affecting those around us; sometimes referred to as 'non-copitis'. It's equally unhealthy to have no emotional reaction at all, since this usually means that we are in denial and the emotional reaction will follow at a later stage, sometimes with surprising power.

Excessive or absent reactions can involve a persistent anxiety state or depressive illness, which are both examples of mood disorders. A prolonged emotional reaction, which is not severe enough to be classified as a mood disorder, is called an adjustment disorder. This is a prolonged difficulty in coming to terms with a loss or change, without it being severe enough to be a mood disorder.

Solutions to 'non-copitis'

It's important to remember that emotions are normal and are part of our way of learning to adjust, as well as letting others know of our distress. Emotions are usually best expressed rather than 'swallowed' and turned inwards. There is nothing wrong with crying or weeping or expressing anger, so long as this does not hurt other people or oneself. Sharing how you feel with someone close to you, someone you can confide in, can help reduce the overwhelming feeling of strong emotions. It also helps us to feel that we are not alone in the world, or alone in facing pituitary disease and its treatment.

Carers, family and friends can help by just being with someone and letting them talk or cry if they want to. Carers don't need to come up with answers or easy solutions; it is enough that they are there and being with the person who is suffering, and, in some respects, sharing the burden of the suffering.

Things not to do

Try not to 'drown your sorrows' in alcohol, or use other recreational drugs to make you feel better. Unfortunately in this life we never get something for nothing; alcohol makes us feel better in the short term, but we soon need to drink more to have the same effect and then alcohol starts to depress our brains, quite literally. It then disturbs sleep, memory, concentration, and exacerbates anger and fear, making the whole situation much worse.

Don't withdraw from your friends and family; this just induces self-pity and then self-loathing. Stay in contact with your friends and family, even if initially they themselves don't know quite what they should be saying and doing.

If emotions seem extreme, disabling, or prolonged, then do seek help. Do go and see either your own general practitioner or speak to your Endocrinologist or endocrine nurse about how you are feeling. Such people should be able to help with these excessive feelings, or they will refer you on to someone who can help you.

How do I know if I have an anxiety disorder?

There are three main types of 'pathological' anxiety:

• panic disorder,
• generalised anxiety disorder, and
• phobias.

A panic attack occurs when you suddenly feel overwhelmed by fear, with catastrophic thoughts such as you are going to 'drop down dead', or are about to have a heart attack or stroke. Physical symptoms can be very strong and sometimes overwhelming. They include:

• dizziness,
• palpitations,
• difficulty in getting a deep enough breath,
• shaking,
• sweating,
• nausea, and
• diarrhoea.

Stress hormones such as adrenalin (epinephrine) and noradrenalin cause these physical symptoms. The difficulty in getting a deep enough breath can cause you to over-breathe (hyperventilate) which causes further physical symptoms such as pins and needles or numbness in the hands and feet, further dizziness and a 'spaced out' feeling (derealisation), which can be very unpleasant.

A generalised anxiety disorder affects us by giving us a pervasive and persistent feeling of apprehension. Other people describe this as feeling on edge, or having difficulty relaxing, with a sense of tension and restlessness which is nearly palpable within our bodies. Sleep is disturbed, with difficulty getting off to sleep being the main problem. The same physical symptoms as felt in panic attacks may also affect you, but less severely and more persistently.

A phobia is an excessive fear of something that you avoid. This will usually have been present before the pituitary disease, but may be exacerbated by either diagnosis or treatment. People may develop a phobia of the hospital, or even seeing a particular doctor or nurse, who has had to give a particularly difficult treatment or bad news. Blood and needle phobias may need attention. There may be a more generalised problem with apprehension on leaving the home (agoraphobia) or apprehension in enclosed spaces such as lifts (claustrophobia).

Solutions to anxiety states

You can help yourself by giving up alcohol and also giving up any stimulants. The commonest stimulant that we tend to take is caffeine, which is an ingredient of tea, coffee, cola drinks, Lucozade, Red Bull, and some painkillers.

A particular type of psychological treatment, called cognitive behavioural therapy or behaviour therapy, is particularly effective at helping people with anxiety states. Behaviour therapy in the form of gradually exposing yourself to increasingly feared situations, in a stepped approach (graded exposure), is particularly effective at helping phobias. Panic attacks and generalised anxiety usually require a cognitive type of therapy to be added to the behaviour therapy, since panic attacks and general anxiety are usually promoted by how we think about a situation and the thoughts we have about it. Some endocrinology services and general practitioners have psychologists or other cognitive behavioural therapists attached who will be able to guide you through this very effective therapy.

If having cognitive behavioural therapy and stopping stimulants isn't enough to help you with your anxiety, then medication can be of help. In the short-term, benzodiazepines, such as diazepam, can be very helpful indeed, but are only a short-term solution because we quickly become tolerant to them and sometimes dependent on them. Most doctors tend to advise having this medication for no more than four weeks. Taking it only on a bad day, rather than regularly, can reduce the chances of tolerance and dependence. More usually, doctors will prescribe selective serotonin reuptake inhibitors (SSRIs), such as sertraline, citalopram and paroxetine, or similar medication. These drugs help to reduce anxiety, but you will need to be on them for several weeks before you notice their beneficial effects. These drugs are not addictive and neither tolerance nor dependence occurs. Once you start taking them, it is important that you don't leave out a dose, since they can sometimes cause a 'discontinuity' reaction that can be unpleasant for a day or two.

Depressive illness

You may recognise that you have developed a depressive illness when you realise that for two weeks or more (for most of the time) you've felt low in your mood or spirits, despondent, miserable, weeping, sad, or unable to enjoy or take an interest in anything. Added symptoms may include sleep disturbance, changes in appetite and weight (usually loss of both), low energy, poor concentration and memory, low self-esteem, persistent anger, and low libido (sexual drive). Most worryingly, depressive illness is often accompanied by suicidal thoughts, which can be quite persistent and troubling, particularly in the early hours of the morning when you are unable to sleep.

Depressive illness commonly accompanies anxiety. Depressive illness can also be a complication of a prolonged inability in coping ('non-copitis'). Drinking alcohol to excess on a regular basis can also make you depressed.

Causes of depressive illness

As with any medical condition, the best way to understand the cause of depressive illness is to think about the 'three Ps';

• predisposing,
• precipitating (triggering), and
• perpetuating (maintaining) factors.

In depressive illness predisposing factors include losses and traumatic times as child, a family history of depression in first degree relatives, and a previous history in one's self. Precipitating factors usually involve a life event or social adversity. An excessive amount of certain hormones can cause depressive illness, such as in Cushing's syndrome, with excess Cortisol. Similarly, a lack of certain hormones can cause depressive illness, such as a lack of thyroid hormone. Recent research has suggested that Growth hormone replacement, if you have a low level, can improve mood, energy and consequently quality of life.

Maintaining factors include hormonal upsets, continued life difficulties, too much alcohol, and a lack of a confiding and loving relationship. It's important to realise that any of us have the potential to develop depressive illness. Having a 'strong personality' is not a defence again depression. There are many famous examples of 'strong personalities', who have achieved a great deal in their lives, who have also suffered depressive illness. Such people include Sir Winston Churchill, and Abraham Lincoln.

What can I do about depressive illness?

• Firstly, make sure that you cut down or give up alcohol, if you are drinking to excess.
• Secondly, share the extent and severity of your feelings with someone you trust who is close to you, to reduce your sense of emotional isolation and loneliness.
• Thirdly and most importantly, you must go and see your doctor who will almost certainly be able to help you overcome your depressive illness.

There are two main treatments for depressive illness; drugs and talking. The drugs are antidepressants and there are now over 25 available. These are not addictive drugs and work in 60% of cases, using the very first choice of medication. They take several weeks to work and you will then need to stay on them until at least four months after you have recovered, to make sure you don't have a relapse. There is now overwhelming evidence that the symptoms of depressive illness are caused by reversible biochemical changes within the brain. The drugs work by restoring the balance between various neurotransmitters within the brain, thus restoring normal brain function.

The proven talking treatments for depressive illness are either cognitive behavioural therapy or interpersonal psychotherapy. Cognitive behaviour therapy works on the theory that we develop depressive illness because we perceive our lives, our futures, or ourselves in a negative light. It works by helping us to challenge and change our beliefs about our lives our futures and ourselves. It does this by helping us to identify those automatic negative thoughts that we all tend to have to a greater or lesser extent, but which become excessive and pervasive when suffering from a depressive illness.

The behavioural part of the therapy works by encouraging us to change what we are doing and how we are coping. For instance rather than lying on the sofa feeling sorry for ourselves, cognitive behavioural therapy would encourage us to get up and do something different, preferably something active. In relation to this, a lot of people find that a regular gradually increasing programme of aerobic exercise helps us both physically and emotionally. There is some evidence that this is a useful treatment in its own right for mild or moderate depressive illness. It has the added benefits of improving our fitness, strength, stamina, with consequent beneficial effects on our sleep, hormones, and immune system. Interpersonal psychotherapy, which may be something you would have as an individual or with someone else (couple or family therapy), is based on the idea that we become depressed because of a difficulty in a relationship or in several relationships. Sometimes relationships keep going wrong for the same reason.

Interpersonal psychotherapy helps us to understand why we do this and gives us the knowledge and strength to try out different things and behave differently towards other people. Remember: the only people we can change are ourselves. By changing ourselves, other people will change how they behave towards us.

Beware

If you have any suicidal thoughts or symptoms of psychosis, such as hearing someone when there is no one there, or developing worrying persistent beliefs that are unusual and intense, you should go to your doctor as soon as possible; preferably the same day.

Cushing's syndrome

Cushing's is the most emotionally upsetting hormonal illness I know. Over half of patients with Cushing's syndrome or Cushing's disease have a mood disorder; either depression or anxiety, or more usually both. In one study a quarter of the patients showed evidence of mania (the opposite of depression), in which they were excessively happy or irritable, with excessive energy and little need for sleep. Excessive cortisol probably causes these mood problems by its effect on brain neurotransmitters such as serotonin and noradrenalin. Cortisol also has a direct effect on the hippocampus, which is the part of the brain particularly concerned with memory. We know that the degree of emotional upset is related to the concentration of cortisol. The good news is that in the large majority of patients as soon as the cortisol levels come back to normal with treatment, the mood disorder goes away.

Medicines commonly given to patients with Cushing's who have a mood disorder include major and minor tranquillisers. Antidepressants have a limited role, since they take a long time to work, but can sometimes be helpful, particularly if the mood disorder persists once the Cushing's has been treated successfully.

Some authors believe that major life stresses can actually bring about Cushing's. The methodology of such research is difficult and complicated. I do not think that there is sufficient current evidence to support this theory.

Drugs such as Bromocriptine and cabergoline increase the action of brain dopamine, and can be prescribed to people with a Prolactinoma or acromegaly. Uncommonly these medicines may cause a mood disorder, or more rarely a psychotic illness. These reactions seem to occur more often when these drugs are given for non-endocrine reasons, such as Parkinson's disease. In a psychosis, people develop hallucinations (e.g. hearing someone when there is no one there) or delusions (false beliefs), which can dominate their lives. Such a person will usually have no insight into the unreal nature of these experiences. They should be taken to their doctor as soon as possible, to consider urgent treatment.

Insomnia

Difficulty in sleeping, with consequent tiredness during the day, is probably the commonest change brought about by stress and worry. If you are having trouble sleeping, it's important to try to get back to normal sleep habits. Again, reduce or preferably stop drinking alcohol. Stop drinking stimulants such as caffeine. Even drinking caffeine drinks during the day can disturb sleep at night. When stopping caffeine, it's important not to suddenly stop it, since this can cause bad headaches. It's probably best to tail off caffeine over a two or three week period.

Make sure your bed is comfortable and your bedroom is dark and has a comfortable temperature. If for any reason you are disturbed by noise, try to insulate the bedroom against noise, or wear earplugs. If the room is too light, try wearing an eye mask.

Try to establish a regular pattern to your sleep, rather than going to bed at different times. If you can't immediately go to sleep, just enjoy resting. Practise a relaxation technique, perhaps taught to you by your partner if you have one. If you have a worry on your mind, try writing it down on a notepad beside your bed, saying to yourself that you will deal with it in the morning.

If you still can't sleep and don't feel at all tired, get out of bed and go and do something relaxing, but diverting, such as reading for a while or listening to light music on the radio. If you are having trouble sleeping, try not to read in bed or watch television in bed. Try to get your mind used to the idea that bed is a place for sleeping, at least for most of the time!

If all this fails, go and see your doctor. You could be suffering from a primary sleep problem, such as restless leg syndrome, or you could be having trouble sleeping because of a mood disorder that needs attention in its own right.

Children and young people

Children with pituitary disease usually develop normal intelligence, even if they require time out of school. Children also have a normal emotional development. The avoidance of long admissions to hospital, away from family and friends, helps this.

Having a smaller stature than normal may affect social interactions and coping styles. Craniopharyngiomas are tumours that occur in the Hypothalamus, which is at the bottom of the brain just above the Pituitary gland. They can occur in children as well as adults and can be associated with psychological problems including concentration and memory difficulties, excess sleepiness and appetite and a change in personality.
It is helpful for all such children to regard themselves as a success in one or more aspects of their lives, as a way of boosting their self-esteem.

Conclusion

We all have feelings driven by the reality of what happens to us and how we perceive that. When these feelings are prolonged, excessive or disabling, then we need help with them. The causes can be our hormones, social difficulties or the people we are. Since no-one is immune to these reactions, don't be ashamed to seek help for them.