Father attempted suicide and family almost lost home after GP missed common genetic condition for six years
Diagnosing ME without testing for haemochromatos is like saying ‘go away and rot’, Lisa King says.
A father who was on the verge of losing his home and contemplating suicide after doctors misdiagnosed him with ME while overlooking a treatable genetic condition for six years, says the NHS has treated him with “contempt”.
Peter King, 60, from Essex, found out in late 2018 he had haemochromatosis, often known as iron overload, a heritable disorder affecting as many as one in 200 people in the UK.
It causes iron to build up to toxic levels in the blood, potentially damaging the liver and joints, and can lead to cancers and liver disease.
|Fatigue is one of the earliest signs, but when the black cab driver saw his GP in 2012 after he began falling asleep at the the wheel, he was sent away with a diagnosis of myalgic encephalomyelitis – chronic fatigue syndrome (ME/CFS).
“I said is there nothing you can do to help me? Medication or treatment? She said: ‘nope’,” he told The Independent. “So, I just left, and this was my future as far as I understood, I had ME/CFS.”
However, NHS guidelines specify that doctors shouldn’t diagnose ME/CFS without a six-month period of monitoring and testing.
To make matters worse, routine blood tests at the time showed elevated levels of iron in his blood, and the laboratory notes sent back to his GP at Deal Tree Health Centre recommended testing to rule out haemochromatosis if they remained elevated – but this did not happen.
Over the next six years Mr King, his wife Lisa and their two sons went from living a comfortable family life to surviving on benefits, doing paper rounds and odd jobs to make ends meet, and fighting to keep possession of their home.
ME/CFS is not currently treatable and living with this knowledge and steadily deteriorating symptoms that would leave him confined to a chair for hours took a psychological toll.
“The anxiety and stress levels on me were enormous,” he said. “The potential for not recovering, as time went on, got greater and greater.
“I had to take antidepressants, and I still do. There was a point, a few episodes, where I was planning to commit suicide.”
Another side effect of his antidepressants was that he lost his libido.
|“It’s financial, physical, emotional, everything – my whole identity has just been obliterated,” he added.
But despite this toll Mr King was only referred to an ME/CFS specialist, Dr Abhijit Chaudhuri at Queen’s Hospital, Essex, last year – on his therapist’s recommendation – and his world changed again.
“He examined me and said, ‘you do not have chronic fatigue syndrome / ME’,” Mr King said. “This was like a bombshell. I said it was ridiculous, ‘what are you talking about?’”
Referral to a haematologist finally confirmed his chronic fatigue was a symptom of hereditary haemochromatosis and he was immediately started on weekly venesections (the same process as giving blood) with his iron levels beginning to return to normal.
But this new diagnosis has rocked him again. He is again having therapy to come to terms with the last six years and venesections have – so far – not had a lasting impact on his other symptoms, thought this may take time.
The biggest factor though is the six years of pain, stress, lost earnings and family time.
“Had they done the right thing and referred him in 2012 … he would have been back to work in six weeks,” Lisa King said. “This was all avoidable.”
This authoritative booklet has just been updated and is available to order from the website shop as a hard-copy or from Amazon in Kindle format.
The ME Association makes hard-copies of the Purple Book freely available to nominated healthcare professionals in the UK because we want to improve awareness and understanding particularly of the diagnostic process.
We also have a leaflet available on the importance of an early and accurate diagnosis that you can download or order from the website shop and share with your GP.
There may not be a diagnostic test for ME/CFS yet, but an accurate diagnosis can and should still be made.