There’s a story of mine in the Daily Mail today) about an illogical and arbitrary corner of medicine. It involves over 300,000 women who are unable to get an effective treatment for a nasty range of symptoms, linked to having low thyroid hormone, unless they can persuade a doctor to ignore the official guidelines drawn up by several Royal Societies and other official endocrinology bodies.
The fascination of the story for me was that the more I delved into the details, the more ridiculous and perverse this odd medical cul-de-sac seemed; a place wherethe patients’ voice was ignored and doctors seemed to operate in a climate of fear. Have a look at the feature to pick up on the basic story before reading this post, which adds a few details that fill it out.
As the article explains, the refusal to listen to patients begins with their first visit to a GP with classic low thyroid (hypothyroid) symptoms – feeling drained, exhausted, cold hands and so on. But unless their blood test shows they are low in one of the two thyroid hormones, these symptoms don’t count as a sign of possible low thyroid; the guidelines state that without a positive blood test, thyroid is not the problem.
Not interested in any dialogue
What the article didn’t say was that ignoring the patient’s voice continues. Even though their charity Thyroid Patient Advocacy (TPA) has uncovered perfectly plausible explanations for their symptom/blood test combination, the Royal College of Physicians (RCP), which has drawn up the guidelines, is not interested in any kind of dialogue at all.
“There was such an outcry after the guidelines first came out that that the College said they would hold a review and look at any new evidence,” says Sheila Turner, chairwoman of the TPA whose website gets over a million hits a month by people in 127 countries
“We sent hundreds of references to research they had ignored for years and expected that the review would at least involve patients and doctors who followed a different approach to the college.” Instead two months later she got a letter saying there had been a review and nothing was going to be changed.
As well as turning a blind eye to contrary evidence, the College also appears totally uninterested in detailed records of patients’ experiences. The great hero of untreated hypothyroid patients was Dr Gordon Skinner who died earlier this year. He was prepared to investigate patients who had classic thyroid symptoms but a blood test showing they were not deficient and treat them with thyroid replacement to see if it helped. If it didn’t he’d stop and try something else.
Testimonies from adoring patients
The extraordinary response of other doctors to this sane approach – never his patients response – was to report him to the General Medical Council for treating outside the guidelines. Disciplinary hearings would be held where hundreds of patients would come to testify to the enormous difference Dr Skinner’s treatment had made to their lives. All 1600 of these testimonies, bound in 13 red leather volumes, still sit on the shelves in his office. Never has the College shown any interest in matching up that information with Dr Skinner’s meticulous clinical reports.
For years campaigners like Sheila Turner, have been pointing out that the standard blood test only tells you about one version of the thyroid hormone – T4 – but nothing about the other version -T 3, which is the active version that T4 gets turned into ( see article for details) . She, like the majority of the women she’s campaigning for, have a problem with turning T4 into T3, but even the possibility of this has been largely dismissed by the RCP .
Recently, however, genetic evidence (not covered in the article) has been supporting Sheila’s claim. It now seems that several genes can make the conversion more or less effective. These genes are found in around 15 percent of the population, suggesting that symptoms frequently dismissed as being: “all in the mind”, are possibly due to a faulty gene.
What’s more early studies have now found that patients with one of these genes, known as DIO2, were more likely to have the kind of low mood that can be a feature of low thyroid. When patients with this gene were given T3 as well as T4 in a trial, they responded better than those who just got the standard T4.
Thyroid hormones for depression
Interestingly some psychiatrists treat depressed patients who don’t respond to antidepressants with T3, suggesting that patients with depression could well benefit from full thyroid testing and possibly treatment with T4 and T3.
It’s worth pointing out that faulty genes are just one of a number of possible causes for having difficulties in converting T4 to T3. These include: aging, obesity, certain diseases, stress, over-exercising, malnutrition, toxic substances such as phenols, cadmium, mercury and some other medicines.
The point of course is that the RCP’s refusal to investigate any of this looks to many like a serious dereliction of its duty to patients.
The article did mention several doctors who will give T3 to patients who don’t seem to benefit from T4. It didn’t mention others who are researching these connections. One is Dr Onyebuchi Okosieme of the Prince Charles Hospital in Merthyr Tydfil who believes the case for adding T3 to treatment with T4 is ‘compelling’, although he says it’s not yet strong enough to recommend it. He’s now planning a study of different dose combinations involving 3000 patients in Wales.
It proved impossible to get to talk to him while researching the article. He may just have been busy but he wasn’t the only doctor who refused to talk or return calls about using T3. It is hard to see how refusing to listen to patients and creating a climate of fear among doctors has anything to do with good medicine