From the Daily Telegraph, 28 July 2014. By Anna van Praagh.
They help patients other doctors have given up on, often by prescribing drugs and treatments the medical establishment won’t touch. But at what cost?
Ten years ago Jane Lively was a happy and successful mother of two young children. “I was a bit of a super mum,” she says, laughing, “always happy, always on the go with my children, always busy.” Then, almost overnight, something started to go drastically – and very mysteriously – wrong with her health.
“I was suddenly absolutely exhausted all of the time,” she says. “But I couldn’t sleep because of these huge adrenalin rushes that afterwards would leave me collapsed on the floor unable to get up. My children were two and three at the time and it was very scary, I felt like I was dying.”
Jane, 46, a former wardrobe mistress from Hereford, asked her GP to do some blood tests, but they all came back as normal. Her symptoms worsened but, apart from offering her beta blockers and antidepressants, her doctor said there was nothing he could do.
As the years slipped by Jane became convinced that there was something wrong with her thyroid, the gland in the neck that regulates metabolism. Her blood tests said not but, through internet research, Jane heard about a maverick doctor called Gordon Skinner, who was apparently successfully treating people for thyroid conditions in Moseley, Birmingham, even though their blood results said their thyroid hormone levels were within the “normal” range.
“By the time I saw Dr Skinner in 2009 I could hardly lift my head up to speak, I was so weak,” she says. “He gave me [the drug] thyroxine and cured me.”
Skinner, who died last year, was notorious for his views on hypothyroidism (in which the thyroid produces a reduced level of thyroid hormones) and his decision to prescribe thyroid drugs to people who – according to received medical wisdom – were not suffering from the condition.
It is estimated that up to a million people in Britain have poor thyroid function, and Skinner had thousands of devoted female patients (most of those who suffer from hypothyroidism are women) who were eternally grateful to him for helping them when their GPs had told them they were either depressed or suffering from a somatoform disorder; a mental illness that manifests itself in physical symptoms.
These women commonly say they owe Skinner their lives. Indeed, all of their symptoms either disappeared or improved under his care. But Skinner’s unconventional views brought him into conflict with most of mainstream medicine, particularly endocrinologists, who insist prescribing thyroid drugs to people who don’t need them can result in osteoporosis, heart attacks and strokes.
Though he was never struck off, for the last 10 years of his life Skinner was hounded by the General Medical Council (GMC) for “reckless prescribing”. His last hearing took place the month before he died.
There is a highly active hypothyroidism community online, and it is inundated with tributes for Skinner. “Thank you, dear sir, and may you be eternally blessed,” writes one user. “May you rest in peace free from the ignorance and persecution you experienced here on Earth,” says another.
Those outside that community can be forgiven if they have never heard of Skinner. But he wasn’t the only doctor in Britain prepared to challenge the status quo and, like Ron Woodroof, the Aids sufferer played by Matthew McConaughey in the Oscar-winning film Dallas Buyers Club, dole out drugs or treatments contrary to official guidelines.
In March this year, Julian Kenyon, a doctor based in Marylebone, London, appeared before a “fitness to practise” panel for treating cancer patients with Sono Photo Dynamic Therapy, a treatment that he claimed used sonar and light to kill tumour cells even in late-stage cancer patients. Kenyon also treats cancer patients with intravenous vitamin C, a practice that has attracted derision from the medical profession, but is gaining credence in the US.
Sarah Myhill, a doctor who operates from a private practice in Wales, and believes in a range of alternative treatments, has been the subject of 30 different cases brought by the GMC, most of them, like Gordon Skinner’s, to do with the prescribing of thyroid treatments for people whose bloods are “normal”.
She also has legions of supporters and a campaign has been launched to save her from what her fans perceive as a “witch-hunt”.
“The GMC simply doesn’t like my anti-establishment views,” she says. “Most doctors don’t listen to patients and don’t want to consider views that undermine their authority. They just look at patients from behind their half-moon glasses and say, ‘Don’t worry your little head about it.’ ”
Myhill cites the work of David Healy, a professor of psychiatry at Bangor University, who was the subject of professional opprobrium and the wrath of pharmaceutical companies when he said SSRI antidepressants could trigger violent and suicidal behaviour in some patients, and was later proved right.
In his latest book, Pharmageddon, Healy presents a bleak picture of the way the pharmaceutical industry has co-opted medicine, a state of affairs that Myhill says is “akin to mothers learning about nutrition from advertisement hoardings posted by the food industry”.
“Doctors who fail to toe the drug-industry-driven, conventional-medicine, symptom-suppressing line are singled out for special attention by the establishment,” she says. “One doctor complained about me because I said mammograms do more harm than good – now we know that’s the case. I suppose you could say I’ve been criticised for being ahead of my time.
“I have faced 11 years of GMC prosecution simply because my ideas on medicine lie outside conventional medical practice. At least I have to be thankful that I live in the 21st century – earlier heretics were burnt at the stake!”
But some of the causes Myhill champions have been thoroughly discredited. She has, for example, promoted the link between the MMR vaccine and autism, a theory first suggested by disgraced doctor Andrew Wakefield and blamed by the medical profession for recent measle epidemics.
Myhill and Skinner were united in their belief that there was a scandal going on in Britain in relation to the diagnosis and treatment of hypothyroidism, and Skinner could not have been more vocal in what he saw as a great injustice.
A former virologist based at the University of Birmingham, he argued that, in any scientific group there was always roughly five per cent that didn’t fit into the bell curve and so couldn’t be diagnosed via a blood test. If patients were showing symptoms of hypothyroidism, he was prepared to treat them. And, as evidence of the unreliability of blood tests, he pointed to the discrepancies between what was considered normal levels of the hormone in different countries.
One of Dr Skinner’s clients who testified for him at one of his numerous GMC hearings, for example, had been diagnosed for an underactive thyroid in Germany, but in Britain was declared healthy. The difference between levels in Britain and the US are even more stark: in the UK “normal” Thyroid Stimulating Hormone (TSH) levels are defined as between 0.5 and five micrograms per deciliter (mcg/dL). In America the range is 0.3 to 3 mcg/dL, which means more Americans are diagnosed as hypothyroid.
Dr Skinner was also criticised for regularly prescribing Armour Thyroid, a thyroid replacement taken from a pig’s gland, which contains all the active hormones you need for your thyroid to work efficiently, whereas the synthetic thyroxine that British doctors are told to prescribe contains only one, T4. Skinner thought that many people weren’t able to convert T4 into the active hormone, T3, and therefore thyroxine was useless to them. But as Armour is no longer listed in the British National Formulary, the reference book GPs use for prescribing, many don’t know it exists, something Skinner put down to the workings of “Big Pharma”. Natural products can’t be patented, he said, and therefore were not lucrative, so GPs were discouraged from prescribing them.
Other patients, who don’t have a compliant doctor like Skinner, order Armour Thyroid online from the US.
Leading endocrinologist and the president of the British Thyroid Association, Dr Anthony Toft, however, sees things differently, comparing Skinner “and his like-minded colleagues” to “snake oil salesmen”, “taking advantage for financial gain of a vulnerable group”.
According to endocrinologist Prof Tony Weetman, one of the expert witnesses testifying against Skinner, the reason these people’s blood tests come back as normal is because they aren’t hypothyroid but are suffering from a “somatoform disorder”, meaning symptoms are psychological.
“Our view as endocrinologists is that if the blood tests are normal it’s more logical to assume that it’s not thyroid disease,” he says, “and to look for another cause rather than prescribe potentially harmful and certainly irrelevant thyroid hormone to collude with the patients in their view they have thyroid disease.”
There is, says Toft, “a cabal of maverick doctors rejecting established practice. Their treatment is eccentric and, if not closely monitored by biochemical testing, could undoubtedly be harmful in the long-term.”
Hyptothyroidism is not the only condition which has a “normal” range that differs from one country to another. In the US, for example, you would be prescribed statins if your 10-year risk of developing cardiovascular disease was estimated at over 7.5 per cent; in the UK your risk would need to be over 20 per cent.
And there are many other anomalies over drugs and treatments that are available abroad but not in Britain.
Proton beam therapy, used to fight cancer, bombards tumours with protons using high-intensity X-rays. The millimetre-accurate treatment is known to be effective and is claimed to be less destructive to surrounding tissue than radiotherapy, and so less likely to cause side effects, but is not available in Britain for reasons of cost.
In the US, a three-drug treatment is available for children suffering from neuroblastoma, the most common cancer in infancy, which was shown in a trial to cut deaths by 25 per cent, but is currently not available in the UK while doctors assess its efficacy.
Anomalies such as these help explain why an estimated two million Britons regularly buy medicines online, including prescription drugs and those not available on the NHS.
Whether doctors like Gordon Skinner are ahead of their time or a hazard to their patients, only time will tell. But there have certainly been many maverick doctors who struggled to be heard whose research has been vindicated with the passage of time.
The Australian physician Barry Marshall was so frustrated in his attempts to convince the medical profession that stomach ulcers were caused by the bacterium H. pylori that in 1984 he produced ulcers on demand by drinking a batch of it. Prof Stanley Prusiner endured derision for two decades before winning the Nobel Prize in 1997 for identifying the cause of BSE.
And cardiologist Prof Mike Chester was sacked in 2011 from his job at Royal Liverpool and Broadgreen hospital trust after raising concerns about patients undergoing unnecessary angina surgery. His theory has largely been proved correct by new American research.
In the hypothyroidism community, a split has occurred between two groups: those who feel that you must work with your doctor, and the militant arm, who feel alienated and disenfranchised by conventional medicine and advocate buying Armour or whatever else is needed online, where it is easy to obtain prescription drugs from abroad without a prescription.
Barbara Ramsey, 58, is in the latter camp. A university administrator from the West Midlands, she developed symptoms of hypothyroidism in 2004, but her bloods came back as normal and she was diagnosed with chronic fatigue syndrome. She went on to see nine different consultants but no one would diagnose her with hypothyroidism, even though she had responded well to the thyroxine she finally managed to persuade her GP to give her in 2013.
Barbara’s problem is that her GP will only prescribe a certain amount of thyroxine, and no more, but she feels she needs more to thrive. When she said this on an internet forum she was flooded with offers from people who got prescriptions of thyroxine from their GP but actually used the Armour Thyroid they bought online, and gave away the thyroxine to people in Barbara’s position.
After a few run-ins with the GMC, Dr Barry Peatfield, 77, another doctor in Skinner’s camp, decided to give up his register, which means he still practises but can no longer prescribe, and advises his patients to buy natural remedies, including Armour, online. This in itself is fraught with dangers: online pharmacies based in Britain are regulated by the Care Quality Commission, but if they are based abroad, their products are often subject to far less scrutiny.
Prof Weetman says, “Dr Peatfield voluntarily erased himself from the GMC register and no longer practises as a doctor, well that speaks for itself. He was prescribing irresponsibly in the absence of proper management and diagnosis and in a way that doesn’t fit with normal endocrine procedure. The reason we have medical guidelines is because people are not complete experts in every field – and no GP can be an expert in every field – and therefore we need to provide expert guidance.
“Doctors making up their own rules are a danger to patient safety and these cases were brought before the GMC for that reason.”
Peatfield is indignant at the accusation that he might be putting his patients in danger. “How can we put patients in danger by using natural products to treat their illness, the same as we have done for centuries?” he says.
Colin Dayan, professor of clinical diabetes and metabolism at Cardiff University, says, “Years ago Armour was used as a slimming agent. How are we to know this has not become a drug to these people? We don’t want to end up with a rash of strokes. Think of what happened with the outbreak of measles in South Wales because of the fear over the MMR vaccine. If we prescribe thyroxine on a mass scale it will have consequences.”
Indeed, the work of Andrew Wakefield has done little to enamour the medical profession of mavericks. Is it possible, however, that another unexpected side effect from the Wakefield scandal is that the medical profession is less prepared to take account of dissenting voices?
While condemning Skinner, Toft can’t help but admit that “the best that can be said of Dr Skinner is that he was an intelligent rogue who may have stumbled upon something important without recognising its significance.
“Dr Skinner, by using combination thyroid hormone treatment, could be considered to be ahead of his time. Looking to the future, we may well conclude that there are patients with normal thyroid blood tests who have a genetically determined inability to convert thyroxine secreted by a healthy thyroid gland with maximum efficiency.”
Dayan, despite his criticisms, admits he is working with Skinner’s team “to try and work out what we can learn from the experience of his patients”, and concedes that “there may be a small number of patients whose blood tests are normal but who benefit from thyroxine, but that is a theory, there is no evidence”.
Meanwhile, Skinner’s assistant of 25 years, microbiologist Afshan Ahmad, is continuing his research work.
“My personal belief is that all these endocrinologists and GPs have made their guidelines and for the last 20 years they have not treated this group of people, they’ve called them work-shy and mad,” she says.
“If it is proved that they have done them harm by not treating them, the whole world will come down on their heads. That explains the strength with which they are defending their corner.”
Patients’ names have been changed