Tick box medicine that fails hypothyroid patients

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

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Comments

  1. M Macleod says:

    why exactly is this person ‘annie’ being given air time, she is as ignorant as the drs in question…youv’e heard of the hyppocratic oath not that the NHS adheres to it…hippocrates said
    ALL DISEASE BEGINS IN THE GUT…exactly where hashimotos thyroid and ALL consequential diseases come from..diabetes cancer heart disease BILLIONS and BILLIONS and BILLIONS would be saved if drs educated themselves…THEY ARE THE CAUSE of the NHS being in self destruct mode GREED ARROGANCE IGNORANCE

    • Not sure who ‘Annie’ is – do you mean ‘Anina’? I’m happy to give airtime to who aren’t rude or abusive and saying something that is not totally idiotic. Wasn’t sure if ‘hypocratic’ oath was meant to hint at a hypocritical one or a misprint. Is looking as if microbiome plays a much larger part in disease than docs used to think but having identified it as a cause of a condition like hashimotos thyroid is there anything to be done to prevent it and presumably it doesn’t change treatment

      • Hashimoto’s has an extremely strong link to poor gut function, leaky gut and gluten intolerance. Currently medics rarely consider this. Or only test for coeliac (not the same thing) Yet many, many Hashimoto’s patients find strictly gluten free diet and improving low vitamins (B12, folate ferritin and vitamin D) caused by LOW stomach acid results in significantly reduced antibodies and much better health. Adding small dose of T3 is often key to improving symptoms and gut function.
        See Thyroid UK website and very active online support group. (Over 64k members) Also lots of USA based websites looking at gut as key to this difficult disease – The Thyroid Pharmacist, Chris Kresser and Amy Myers. Just treating with Levothyroxine does not alleviate symptoms for a significant number of hypothyroid patients

  2. Anonymous says:

    It’s quite simply an appalling situation in this day and age-thyroid disorder is common and proper thyroid functioning essential to life, so why the refusal to take patients seriously? I just don’t understand it-it feels like living in a nightmare. I have had half of my thyroid removed for suspected thyroid cancer and my test results are now at the bottom of the respective ranges, and my TSH level is 4 times higher than before surgery. I didn’t have any problems with thyroid function before this. However, because my results still fall within the incredibly wide reference ranges, I am told that my results are ‘normal’ even though I have documented tests results showing that they are NOT ‘normal for me as an individual. We all have unique individual bio-chemistry and correct thyroid levels for the individual. I am not the same person since this surgery, I am extremely depressed and my periods have become completely erratic. I worry about the deterioration in my health, which I will undoubtedly have a battle to get treated properly, if at all. I feel that the NHS have just removed half of a vital organ and left me to get on with it. I was so fit and healthy before this surgery and used to look forward to the future-now I’m not even sure I have one. I am only 43. They scared me into thinking that I might have cancer, whipped half my thyroid out two weeks later and have washed their hands of me ever since. If I have to wait to fall outside the ridiculous reference ranges to get treated I am likely to be extremely ill, with years of deteriorating health until that point. I though prevention was supposed to be better than cure?

    It’s also a sexist issue, as it’s mainly women that suffer thyroid problems and are dismissed as depressed, fat, menopausal etc, seemingly anything that doesn’t involve looking at the most obvious culprit-thyroid dysfunction! I really feel so many suffering patients can’t be wrong and they massively outnumber the amount of male Endocrinologists who seem to have very little idea….

    There is something very very wrong.

  3. Pippa Hurley says:

    Jerome Burne, would you PLEASE consider doing a follow up article, maybe with use of some of the responses you have here! We have no-one to speak out for us in the public domain, only those feverishly, passionately and in the end, hopelessly ranting inside a concrete bubble unable to burst through and be heard. The powers that be, utterly refuse to listen or even care, and can get away with it because their behaviour is only felt by the helpless sufferers.

    Here in the UK, we probably have the most blinkered, manacled, downtrodden thyroid diagnostic and treatment options IN THE WORLD, with Doctors given the most cursory training throughout their careers, falling disgracefully below the quality they had in in 1950s!, and utterly dictatorial headship in the form of the Head Endo for the NHS, making them PETRIFIED to step out of line and do their job…CARE FOR THE PATIENT!

    Another good way of course to ‘prove’ that the NHS cannot do its’ job, and making a case to break it up and sell it off to the highest bidders, by hogtying it.

  4. I respond to you as a professional Medical herbalist having treated a large number of thyroid patients including thyroid cancer. Firstly part of the issue is the cookie cutter approach to medicine by the NHS designed to treat acute disease not chronic. Secondly it is the sheer ignorance of the body’s biochemistry and the lack of drugs in this area. Thirdly the primary choice for any condition is the role of surgery. This is how surgeons justify their existence and their paypackets. Fourthly there is an alternative but you have to pay for it. As a Medical Herbalist I can give you very effective compounds for the thyroid including thyroid cancer. ( Incidentally removal of a cancerous thyroid automatically causes the spread of cancer see Pubmed! ) Please go onto a professional website such as College of Practising Phytotherapists and find yourself an expert herbalist. If there is no convenient drug the NHS is useless and very often for that reason they give inappropriate drugs for conditions. Yes, there is an element of sexism as most surgeons are men and arrogant. They also by and large have not a clue about female hormones which are mediated by the thyroid. I am not sure if this is permitted but on my website http://www.medicusherbis.com there are several articles under the presentations tab which you may find helpful. Finally the NHS cannot resolve all disease and treat all conditions so inevitably there is a breakdown and as they are a cartel they can take no responsibility. Absolute Power corrupts absolutely. The more people begin to realise the limitations of the set up and the ability of drugs to resolve disease the more likely we can develop other more effective options and limit the NHS to the things they are good at.

  5. Remember that the body is quite miraculous in its capacity to heal and to compensate. Explore health options across the spectrum, avoiding knives and pills as much as you can. Best of luck.

  6. As long as Allopathic medicine is sourced in materialist reductionist mechanical science it will be limited to the knife and the drug. It is because doctors have nothing other than the option to cut or treat with chemicals that iatrogenic – doctor or medical induced – deaths and injuries now amount to millions annually around the world and rank amongst the top three killers.

    It is because profits, power, prestige, peer approval, professional gain is locked into the materialist approach of modern science, that modalities such as those you practice are tragically ignored. Homeopathy, Nutritional Medicine, Acupuncture and others are also invaluable in treating disease and unlike the knife and the drug, do no harm, but dismissed by arrogant and ignorant materialist science as being of no use, despite the fact that enlightened MD’s and hospitals around the world do make use of them.

    Perhaps we have to have an Allopathic kill-rate at Number One for things to begin to change. We are not far away from that and indications are the Americans are quite close, but they are the most medicated people on the planet.

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