For more than 20 years, Katie Hughes was surprised at the cause of her relentless barrage of paralyzing symptoms.
Palpitations, sudden weight gain, nausea and depression haunted her life from her late teens to her early 40s.
Her hair even fell out due to the mysterious illness. Along the way, doctors blamed her ongoing health problems for everything from her four pregnancies to Katie “making a fuss.”
So when the 49-year-old freelance writer from Cornwall was finally told that all her problems were caused by an error in a tiny piece of tissue deep in her skull – called the pituitary gland – she was overwhelmed by relief.
Freelance writer Katie Hughes, 49, was amazed at the cause of her relentless barrage of paralyzing symptoms such as heart palpitations, sudden weight gain, nausea, and depression. Doctors told her that the issues were caused by an error deep in her skull – the pituitary gland
Katie says: “Tears streamed down my face and a thought came through my mind: I finally know what’s wrong with me.”
And this malfunction, it turns out, may not have happened randomly.
It could, doctors suspect, be linked to an innocent bump in childhood that both she and her parents thought was unimportant at the time.
The pituitary gland, in the form of a kidney bean, regulates the supply of vital hormones that help the body function properly.
If it is damaged or defective, it can lead to chemical imbalances that can lead to anything from chronic fatigue and unplanned weight loss to premature aging and loss of libido or infertility.
This can have devastating consequences because the pituitary gland not only controls the release of the testosterone hormone – vital for healthy muscles, bones, heart and libido – but also controls the release of other essential hormones, such as cortisol, which controls alertness.
The condition, known as hypopituitism, has for the most part not been recognized for decades, with doctors blaming the symptoms for a range of other factors.
But thanks in part to the extraordinary efforts of one woman – graduated from Oxford and former teacher Joanna Lane – the number of people who get a correct diagnosis of hypopituitism and the treatment they need to overcome it has increased enormously.
In 2007, 6,243 patients in the UK were diagnosed with hypopituitism.
By the end of 2018, the number was 18,000 – an increase in experts contributes to a greater awareness of the problem among doctors, rather than a significant increase in the number of cases.
Joanna, 71, from Surrey, lost her only son Christopher, 31 years old, in 2008 when he, depressed and unable to endure the pain and shame of impotence, ended his life.
As first reported in The Mail on Sunday, it was only after Christopher’s death that his mother joined the dots and realized that her son’s depression and low testosterone could have been caused by a child’s head injury – she remembered that he seven fell from a tree.
The pituitary gland, in the form of a kidney bean, regulates the supply of vital hormones that help the body function properly. Damage or malfunction can lead to chemical imbalances that can lead to chronic fatigue, unplanned weight loss or infertility (stock image)
The resulting pituitary damage even had a name: post-traumatic hypopituitism.
Joanna – author of Mother Of A Suicide, a 2016 book about the story of Christopher – began lobbying health leaders to convince GPs to test for the condition in patients with symptoms such as fatigue, depression and erectile dysfunction, especially if they have an had a blow to the head.
Hospitals were also intended to provide all patients treated for a traumatic brain injury with a brochure warning for hypopituitism, while soldiers and football players – both groups with a serious risk of head injury – are now routinely tested for it, partly because of Joanna’s lobby.
Tragically, she did not collect the evidence for the disease until after the death of her son. Letters from his ex-girlfriend showed that they had not had sex at all during their four-year relationship because of his impotence.
He also suffered from depression during his A-levels and once uttered suicidal thoughts after suddenly quitting his job and driving hundreds of miles from Surrey to Edinburgh for no apparent reason.
Once Joanna linked this behavior to his childhood injury, everything fell into place.
Consultant neurologist professor Mike Barnes, director of the Christchurch Group for neurological rehabilitation in Northampton, says: “Because of Joanna’s campaign, GPs are now doing blood tests that measure levels of a wide range of hormones.
“We know that around 40 percent of all patients with brain injury experience problems with their pituitary gland afterwards. A greater awareness of this, and of the tests that can diagnose it, will make a difference for thousands of lives. “
It is not known how many cases of hypopituitism are related to head injury because the NHS does not collect the figures.
But an important 2014 study in Germany found that 40 percent of men who suffered traumatic brain injury suffered an immediate and sustained fall in testosterone levels, which could affect libido and seriously affect mood.
And in 2016, Cambridge University scientists examined 105 head injury patients and found that one in five abnormalities suffered from the pituitary gland as a result
Hypopituitism has for the most part not been recognized for decades, with doctors blaming the symptoms for a range of other factors. In 2007, 6,243 patients in the UK were diagnosed with the condition (stock image)
The treatment includes lifelong hormonal replacement therapy and, as the Katie case showed, not only men are affected. She is still struggling with the specific impact that caused her damage.
There was a little bump like a child when she fell off a toy with space funnel and bumped into a radiator against the front of her head.
But she is also warned that she has a benign tumor on her pituitary gland, which can have a similar effect.
Her symptoms started in her teenage years, when she came home from school and had to go straight to bed for two hours, that was her exhaustion.
The mother of four remembers: “I felt dizzy, had palpitations, arrived, felt nauseous, exhausted, depressed and anxious. And my hair fell out. “
She saw a psychiatrist and got antidepressants. A doctor said that medication “would prevent her from worrying so much.”
Ultimately, the thyroid function test results showed an abnormality. Katie searched online, described the results of her thyroid test and finally came across a statement.
“I remember seeing the word” hypopituitism “in the results,” she says. “Finally there was an answer.
She finally received her official diagnosis at 42. In her case, hypopituitism caused an accumulation of fat around the waist, decreased muscle mass, thinning bones and an increase in ‘bad cholesterol’ in the bloodstream, putting her heart at risk.
However, Katie says: “All my weird and wonderful symptoms can now be united under a common cause – my malfunctioning pituitary gland. My quality of life is not great, but with growth hormone injections and replacement thyroid hormone treatment it is much better than before. “