30,000 Patients Misdiagnosed


2014-0904 GlandThe following article includes an introduction written by Dean Burnett for The Guardian, but the following article was primarily written by Joanna Lane for Mail Online. I chose to share this post in the hope it encourages patients, or their families, to seek additional information and second opinions when necessary. Perhaps, your primary care physician is suggesting a treatment plan based on his or her analysis of the wrong symptoms.


According to an article published by Dean Burnett on the Guardian, “The UK’s National Institute for Health and Clinical Excellence (NICE) determines the guidelines that British doctors should follow. But recent revisions [to NICE] mean that potentially life-saving information about brain injuries isn’t given to patients.”

Currently, patients who present with tiredness and chronic pain are often told they have chronic fatigue syndrome (CFS) or fibromyalgia. After their “diagnosis,” the patients are then offered psychotherapy, exercise, and antidepressants. However, these remedies are not effective in up to 70% of the cases.

In an article she wrote for Mail Online, Joanna Lane notes that due to cutbacks, “patients who complain about the symptoms are usually not given a series of blood tests that could pinpoint the problem, meaning the true cause is not spotted. Patients are then condemned to years of misery and ineffective therapies.”

The remainder of the article is an excerpt of Joanna Lane’s Mail Online article.

Numerous studies have shown that between 20 and 30 per cent of the 135,000 patients who suffer a head injury also experience damage to the pituitary gland, which is situated below the brain, behind the nasal cavity.

The gland produces vital hormones that govern many bodily functions, including growth and repair, the sleep-wake cycle and how we react to stress. If the pea-sized organ is damaged, it may stop producing one or more of the essential hormones, triggering the wide-ranging symptoms of hypopituitarism.

Studies suggest there could be between 18,000 and 30,000 cases of hypopituitarism (PTHP) in the UK each year.

Treatment involves lifelong hormone replacement therapy, which is said to be highly effective but costs up to £6,000 [approximately $9,796.50] a year.”

Professor Christopher Thompson, one of Britain’s foremost experts on PTHP, says:

‘The overwhelming evidence from research studies carried out independently in a wide range of places, including the USA, Europe and Turkey, is that hypopituitarism occurs in up to 30 per cent of people who have survived moderate or severe traumatic brain injury. There is no debate.

‘However, the failure to make the right diagnosis after such injury means patients miss out on essential treatment. That it’s not included in the NICE guidelines [for treatment of head injury] is nonsensical.’

Serious head injury is defined as an injury causing unconsciousness for more than 15 minutes. However, some studies suggest even knocks that lead to a minor concussion, or repeated small impacts such as heading a football, may damage the pituitary gland.

PTHP sufferer Jill Mizen, 67, was misdiagnosed with CFS in 2006, having suffered from pain and blood pressure problems for almost 20 years. She was advised to exercise more, but found her condition worsened.

During her illness, Jill was screened for deficiency in the hormone cortisol, a characteristic of hypopituitarism. However, the test – known as the short synacthen test (SST) – produced a normal result. ‘That was when I was told I had CFS,’ she says.

Yet SST misses two of out every five cases where the cause of cortisol deficiency is damage to the pituitary. In 2007, Jill came across a magazine article about Christine Wrighton, who was incorrectly diagnosed with CFS when in fact she was suffering from hypopituitarism.

‘Eventually, after huge persistence, Christine was able to pay privately for a test which the NHS would accept. This proved she had been right all along – her pituitary was faulty. Her story opened my eyes,’ says Jill.

Jill chose to be retested privately with the more reliable glucagon stimulation test, and was diagnosed as being deficient in cortisol and growth hormone. This proved she too had hypopituitarism.

Sadly, Christine died in July 2011 from complications related to her arthritis treatment, perhaps exacerbated by the fatigue she had suffered for so many years.


Click here to read another Beyond Injury post.

Thanks to Joanna Lane for writing the article; Mail Online for dedicating its resources to publishing the article; Dean Burnett for contributing to the introduction of the article in this post; The Guardian for dedicating its resources to publishing a similar article; Google for helping me find the articles I used in this post; and all the people who, directly or indirectly, made it possible for me to include the picture and text I used in this post.

Leave a Reply

Your email address will not be published. Required fields are marked *