ME/CFS – OR HYPOPITUITARISM?
I don’t have ME, but I have something important to say that I hope may help people who have.
Twelve years ago our 31-year-old son Christopher killed himself. We were devastated and desperate to find reasons. We wondered about the serious head injury he’d had when he was seven and we found that head injury survivors are between twice and four times more likely to commit suicide than other people (1). The more we researched head injury the more we found out. One common complication of head injury is hypopituitarism, when the pituitary gland is damaged and does not make some, or all, of the hormones the body needs to work properly (2). Looking back, we recognised some of the symptoms in Chris. For example, depression, impotence (which we only knew about after his death) and something wrong with his body thermostat, because he seemed to have an aversion to heat.
It seemed as though nobody knew about these risks. When I started to try to raise awareness, people with hypopituitarism wrote to me. I soon learned that many of them had been misdiagnosed with ME/CFS on the way. This is not surprising because when you look at the ME/CFS symptoms listed on ME-Pedia and compare them with the Pituitary Foundation’s list for hypopituitarism there is a surprisingly large overlap. For example, the hypopituitarism symptoms include many which the ME/CFS community will recognise only too well: fatigue, loss of libido, muscle wasting, pale skin, weight loss or gain, and POTS (with its accompanying sleep abnormalities, headaches, dizziness, exercise intolerance and tinnitus) (3). (I should mention here that most hypopituitarism sufferers will have only a selection of these symptoms, because out of the five major pituitary hormones not all may be affected.)
What the people who wrote to me with their stories (4) had in common was that they were persistent, and independent-minded enough not to accept their ME/CFS diagnosis unquestioningly. They looked up their symptoms. They also had the money, usually, to finance private testing – testing which their GP was often reluctant to give them, partly because it is expensive, partly because they are not trained to diagnose hypopituitarism. I began to suspect that these tenacious people were the tip of the iceberg, and that possibly many thousands of the ME/CFS community have been misdiagnosed. Maybe they don’t have ME/CFS at all, but hypopituitarism? Perhaps they can have hormone replacement treatment and get their lives back? How wonderful that would be!
My suspicion hardened to near certainty when I looked at the numbers. Hypopituitarism after head injury (PTHP) happens to 50 people in every 100,000 annually (5). This means 33,000 cases every year in the UK. Up until 1986 only a handful of cases were reported, and since then the number of diagnoses has crept up slowly until now it is around 20,000 a year – still over a third short of what it should be. After decades of under-diagnosis it’s safe to assume that there are at least a million invisible cases of PTHP in the UK today, which is the figure suggested in BBC’s Inside Health programme eight years ago (6). Even this huge figure is not the whole story, because serious head injury is not the only cause of hypopituitarism. Other possible causes are concussion, pituitary tumours, radiation of the head, brain surgery, auto-immune disease, infections or inflammatory diseases of the brain, and some medications (7). What can be happening to all these very sick people, where can they be hiding, unless they are being misdiagnosed with ME/CFS?
So my message is: research your symptoms, research hypopituitarism, and if you think there’s a match, ask for the right diagnostic tests. If you have ever had a head injury or concussion, even long ago, do it straightaway! The brain injury Headway has a page about ‘Hormonal Imbalances’ (8) which you can show your GP. Otherwise you can show your GP print-outs from the Pituitary Foundation and the Mayo Clinic website, marking the symptoms on their list that apply to you. My husband, my daughter and I have set up a charity, Christopher Lane Trust, www.christopherlanetrust.org.uk which gives information about diagnostic tests, including information about the unreliable tests that are sometimes used to exclude hypopituitarism, and we may even be able to fund private testing for people whose GPs will not authorise the correct tests on the NHS. I wish everyone who goes down this road good luck – and persistence!
(1) Suicide after traumatic brain injury: a population study, J Neurol Neurosurg, Psychiatry 2001) http://jnnp.bmj.com/content/71/4/436.full
(2) Schneider HJ et al, Hypothalamopituitary Dysfunction Following Traumatic Brain Injury and Aneurysmal Subarachnoid Haemorrhage: A Systematic Review, 2007, JAMA http://jama.jamanetwork.com/article.aspx?articleid=208915
Pituitary Foundation https://www.pituitary.org.uk/information/pituitary-conditions/hypopituitarism/ plus Mayo Clinic https://www.mayoclinic.org/diseases-conditions/hypopituitarism/symptoms-causes/syc-20351645
(4) For example http://www.investinme.org/Article-650%20MECFS%20PITUITARY%20AWARENESS.shtml
(5) Fernandez-Rodriguez E et al, Hypopituitarism following traumatic brain injury: determining factors for diagnosis, Front Endocrinol 25 August 2011 doi: 10.3389/fendo.2011.00025 http://www.frontiersin.org/Pituitary_Endocrinology/10.3389/fendo.2011.00025/full
(7) The Mayo Clinic website, see footnote 3