UK's Controversial Thyroid Guidelines Generate Concern, Outrage -- Dr. Dick Guttler Says Patients Who Don't Agree Are Deluded and Need to "Get A Life"
As noted in my blog post on the UK's new thyroid guidelines last week, the British Royal College of Physicians (RCP) has declared that "thyroxine is the only treatment that should be given" for hypothyroidism, limiting hypothyroid patients to synthetic T4 drugs only, and declaring that Armour Thyroid (natural desiccated thyroid) "may be harmful." They have also declared that the diagnosis of hypothyroidism should be made based only on Thyroid Stimulating Hormone (TSH) and free thyroxine (Free T4), using the reference range for the TSH test of .4 to 4.5. TSH levels between 4.5 and 10.0 -- with Free T4 levels within the reference range -- are considered subclinical hypothyroidism, and only at levels above a 10.0 is a patient considered overtly hypothyroid. The decision to treat patients with a TSH under 10.0 is left to the practitioner.Patients are understandably furious, as the RCP's recomendations are not based on any double-blind, peer-reviewed, journal published studies that establish the superiority of levothyroxine as compared to desiccated thyroid for management of hypothyroidism and satisfactory resolution of hypothyroidism-related symptoms in patients. Nor is there any agreement among thyroid experts about the recommended reference range, which in this case is far wider than U.S. recommended guidelines, and would therefore exclude many people from diagnosis and treatment for hypothyroidism.
Here are just a few of the selected patient comments about the blog post:
GS says: "Where is the evidence that Armour thyroid is harmful to patients? How can the RCP claim to be practicing evidence based medicine if they don't even have any evidence? The RCP and BTA have provided not ONE single reference to back up their claims."
Sue Chippendale says: "We just cannot let this happen! We must tell everyone we know about this madness and take action, there are thousands of us affected! With every hypo symptom my GP told me that I was not hypothyroid with a TSH of 7.1. An endo confirmed this. When my TSH rose to 10.3 the same endo told me I was hypothyroid. What about the poor folks who's TSH does not go above 10? I cannot tolerate levothyroxine. Why doesn't my GP want me to get better? I just want my life back … please."
Jenny says: "This guideline has shocked me to the core. treating patients so the TSH and FT4 are within range is all very well, but no account has been taken on quality of life. What is the point in having perfect test results when you are half dead with symptoms still? I'm sure some patients do just fine on this regime, but I don't."
Thalia says: "There is something really nasty going on with all this.All the evidence is against the RCP and company on this one and hundreds of thousands of people are suffering unnecessarily and costing the NHS millions as it is as well as ruining so many lives. Millions more are going to be affected by this new ruling and that will cost the NHS even more and reduce the money available for care for everyone. Why are they doing it? Are they mad? Are they evil? Are they personally getting paid large amounts of money by the people who are going to be selling more statins, antidepressants, anti-obesity and heart drugs to all the poor people who only actually need proper thyroid replacement?"
Mog says: "I can't believe that this is happening in the 21st century in a 'civilised' country. It is outrageous. I am in the UK and have hypothyroidism and CFS/ME. I have had to accept the appalling neglect of the condition of CFS/ME by the NHS for the past 16 years, but to learn that the NHS is going even further backwards in their approach to hypothyroidism beggars belief. It wasn't exactly enlightened in the first place. I had been hoping to try Armour as I don't feel levothyroxine really alleviates my symptoms. Not a hope of getting it on the NHS but I was considering trying a private doctor; now I suppose even the few enlightened private doctors will be unable to prescribe it. (And obviously not everyone can afford private doctors or buying it privately - and why should they have to anyway? We've all paid our taxes and NI contributions.) And if levothyroxine is to be the only treatment provided, I have serious concerns about the quality of the levothyroxine that is currently being provided by the NHS.
A UK-based doctor, David Odom, MD, says:
Of course, this move in Britain is politically based. This document is no more than ossified opinion. This is in a country that has 'cookbook' medicine. So, politics rules! Likely, this our future, approaching rapidly. In my practice, I have the patient supplement Thyroid USP, so as to maintain relief from low thyroid symptoms while maintaining a youthful Free T3 (& coincidentally suppressing TSH). It is ironic that the British medical literature has pointed out 'the emperor's new clothes' regarding treatment of hypothyroidism. It turns out that suppression of the TSH is an expected consequence of thyroid supplementation that has no adverse health consequences, moreover the TSH has no specific or reliable correlation with thyroid function. The large majority of medical practitioners follow the system of prescribing synthetic levothyroxine to regulate the TSH, even though this practice has no scientific foundation. Doctors who practice Natural Hormone Replacement therapy, on the other hand, prescribe Thyroid USP or compounded T4/T3 combinations, seeking symptom reversal without regard to the TSH and find success with great benefit for patients."
And any controversy would not be complete without the contentious opinions of Dick Guttler, MD, a self-described thyroidologist, who has a long track record of publishing nastry diatribes against thyroid patients online. Says Guttler:
The decision to only use LT4 for therapy of hypothyroidism is an excellent one....It is beyond belief that there are those who do not understand that T4, and TSH are the gold standard to decide if your symptoms are due to thyroid disease. All other symptoms that do not improve when the thyroid tests return to normal, are just poor souls with deluded concepts about the nature of their symptoms...I am sorry you have continued symptoms when the T4, and TSH are normal, but the data is clear you are not hypothyroid. I tell my patients to look elsewhere if they have unexplained symptoms that don't correct in a few months on T4. I suggest you all get a life and stop filling the web world with your incorrect opinions...99% of all thyroid patients are completely replaced, and symptom free, doing fine without the need for any other therapy than T4.You can read all the 70+ comments here.
Photo: clipart.com
Comments
Thank you Dr Guttler! You agree that a large number of people won’t be helped by T4. Can we quote you?
This is a lesson in what happens when you have socialized health care. I hope we never go to this system in the U.S. or we call all look forward to this level of “caring.”
Dr. Guttler’s comments demonstrate gross ignorance. Anyone who knows how thyroid hormone works, knows that T3 is the active form that “fits” into the receptors. If your body can’t do the T4-T3 conversion, or if it is converting too much of the T4 into RT3, which blocks T3 receptors, then you will be functionally hypothyroid irrespective of what blood tests say.
If I were living in the UK, I would be jailed in a life of misery, because I didn’t feel well until I went onto sustained-release T3-only therapy.
Incidentally, stupid people like Guttler are a prime reason why “universal” health plans don’t work well. It has nothing to do with “socialism”. By not effectively treating chronic illnesses, Guttler-ites grossly increase the cost of health care by making sure that chronic illnesses linger. Thyroid is one good example; another one is celiac/gluten intolerance, where the lethargy of MD-controlled medicine is dragging the system down with excessive costs caused by unresolved chronic illness.
Outrageous, this is insane! Practicing medicine has become all about money in the UK and the USA! I almost died before I was finally diagnosed with hypothyroidism resulting no doubt from Hashimotos disease. Armour Thyroid has given me my life back! I did not respond at all to Synthroid. If fact, it made my symptoms much worse! Patients in all countries deserve the right to choose — even with socialized medicine!!!
I HAVE BEEN HYPOTHROID FOR EIGHTEEN YEARS AND NEED A 100MG BUT MY BODY CAN ONLY TOLERATE 75MG OF THYROXINE. I WAS REFERED TO A SPECIALIST WHO PROMISED ME HE WOULD SORT IT OUT WITH TRYING ME ON ARMOUR AFTER MY BLOOD TESTS CAME BACK BUT MEANWHILE THIS NEW RULING IN THE UK CAME IN AND HE DENIED EVER MENTIONING ARMOUR( MY HUSBAND WAS IN THE ROOM WITH ME) AND TOLD ME THYROXINE WAS THE ONLY TREATMENT . I FEEL LET DOWN AND DONT KNOW WHAT ELSE TO DO.
I don’t wish hypothyroidism upon anyone – but I’ll make an exception for Dick Guttler!
I’ve never understood why people in the US call themselves “Dick” but now I do understand
…but I don’t think this has anything to do with how the health system is finansed in the UK. The UK has by no means the most “socialised” health care system.
It has more to do with the fact that “modern medicine” is a military hierarchy, where a few endocrinologists in the major hospitals are allowed to dictacte the treatment of choice (as in the US and many other countries). If any other doctors disagree, the endos work to take their licences away from them.
I also think a big reason why the TSH test + levothyroxine has stayed with us for so long, is that the American endos (the largest and most influential body of TSH-worshippers in the Western world) would get sued for millions if they would admit that they have treated patients the wrong way for almost 40 yrs.
Other reasons are arrogance and pride – endos just can’t admit they’re wrong: their egos are too big. And yet another reason is money and the interests of the companies who make money from blood tests and levothyroxine.
I was diagnosed with hashimotos haveing an underactive thyroid. i was put on thyroxine. this made me feel worse. 3 different endos told me i had to increase it but i couldnt. through research i am on armour and although i am not 100% i am 90%better than on thyroxine
I have been treated for hypothyroidism since 2001, 3 different Drs. 3 different brands of Synthroid. For the last year I think I’ve been on a placebo.. I had to find a new Dr. who would prescribe Armor, I am now on Armor and I can feel my body comming alive. I truly think Dr. Guttler should listen more then he talks and maybe a little bout with Hypo would make him “think clearly”
This man must be related to my doctors, they simply refuse to beleive that all my symtoms are not related to my thyroid. I know that they are. I have been taking levothyroxine for over 20 years and i take 150g. I have been told that i am resistant to levothyroxine but they will not change it.My new doctors are only practising on me, they are halfwits.
What an idiot. Who gave him a medical license? Hope he gets hypothyroidism to the worst degree ever and rots away from it.
I am a UK patient with hashimoto disease. I have suffered for over 2 years now with severe hypethyroid symptoms, my mum, aunt, grand-mother and great grand mothers had Graves or Hashimoto disease (all treated in France) and I have very high Thyroid antibodies. Unfortunately for me my TSH range never went above 10! I saw an endocrinologist that followed the rules set by the UK government and told me that there was nothing wrong with my thyroid. Told me that I should be put under anti-depressant and Iron tables probably for the rest of my life (I am 37). Luckily for me, my GP was fantastic and listen to my symptoms and family history rather than my blood results. She prescribed Levothyroxine, which has worked fantastically for me. The funny thing is, that as soon as you start taking thyrosine and are therefore officially declared as hypothyroid, they trest you so that your TSH range stays within 2 and 2.5, apparently considered the optimum range!!
Pity rich people in US who feel they can manage without an NHS as we have in UK with access for everyone! Yes this hypothyroid business is a major glitch in the system, no research and no obvious progress in the 12 years since I was diagnosed. I will indeed raise a storm if anyone wants to stop me taking T3 as well as T4 because it did help to remove the ‘mental fog’ I was experiencing – so that I have been able to complete a PhD at the age of 69. OK so my thyroid crashed: I’m lucky to have kept going, even if I’m not as frisky as I would like to be.
I’m from the UK with a TSH over 13 and I still can’t get the proper treatment from the NHS. Currently on 25 mcg of Levo and Dr wont up my dose, I’m told I don’t need the medication and that I’m borderline getting myself worked up over nothing.
“natural” is not always better: it’s usually just less predictable and poorly understood. If you’re having problems converting T4 to T3, your clinician needs to establish that and presribe you T3 instead.
The guidelines recommend that TSH is not suppressed because hyperthyroidism is also a detrimental, potentially dangerous condition. A balance is needed for the body to function normally. Having said that many individuals probably do need to go further than the guidlines to attain what is normal for them. Guidelines are just that and it is down to the clinician to decide if you need higher doses or if you’re a hysterical individual who has latched on to an idea and won’t let go. Going by the tone of most of the emails a fair few of you fall into the latter category.