I believe that many people are being diagnosed with CFS/ME when they really have pituitary problems and need hormone replacement.
When our son committed suicide in 2008 we found out after his death that he had been impotent, and we wondered if there could be a connection with a serious head injury he had aged seven. This led us to discover a vast amount of research showing that the pituitary gland is damaged in around a third of head injuries (google and you'll see). The effects can be loss of libido, infertility, fatigue, weight gain, difficulty in coping with stress, and severe depression, depending on how the gland is damaged. Mild head injury can cause it. It may not show immediately after injury but sometimes decades later.
So how many people are affected? I can only give you UK figures, but around 135,000 people have head injuries each year and so you'd expect about 30,000-45,000 people to be diagnosed with hypopituitarism. But the annual figure for diagnosed cases of hypopituitarism from all causes is - wait for it - a tiny 2,000! So where are all those missing people?
I believe, from correspondence we get through our website
www.headinjuryhypo.org.uk, that many are told that they have CFS/ME. We often get the same story - the person goes to their GP with no idea why they feel so ill, and the GP has no idea either because the condition is so under-publicized, and if he tests them at all for hypopituitarism he (or she) will probably use the short synacthen test which misses 2 people in every 5 - see Wikipedia. The person then goes to private clinics and spends thousands of pounds and sometimes, if he's very lucky, gets correctly diagnosed. Then the big fight starts to get the (expensive) hormone treatment on the NHS . . the whole process can take nine years. And then, hopefully, they feel a lot better and can lead a normal life.
So my message is that if you've had a head injury, or radiation to the head, or a subarachnoid haemorrhage, or maybe none of these because tumours can cause pituitary damage too, and if you are suffering fatigue and depression and maybe some of those other symptoms I listed, please consider getting an endocrinologist to check you out. And remember to insist on the insulin stress test or the glucagon stimulation test to check for growth hormone deficiency/ACTH deficiency and not the short synacthen test!
