(This post was updated to the present! Enjoy!)
2009 was a nauseating year for informed UK thyroid patients. UK’s Royal College of Physicians came out with a press release about the new guidelines on the diagnosis and management of primary hypothyroidism. And it hit the web with a resounding, stiff-necked **THUD**.
The press release was titled:
Thyroxine is the only treatment for primary hypothyroidism
Yup, as if nothing else could possibly exist, even though other hypothyroid treatments do exist, and one has been around for over 110 years changing lives called Natural Desiccated Thyroid. But no, it’s only the blinkered, horse-blinders pronouncement that “Thyroxine is the only….”.
And to underscore the title, the first line of the press release pronounced:
New guidelines on the diagnosis and management of primary hypothyroidism state that thyroxine is the only treatment that should be given for this condition, which is caused by underactivity of the thyroid gland.
And it continues in all its blabbering, tunnel-vision glory:
The guidelines also state that the only validated method of testing thyroid function is on blood, which must include serum TSH (thyroid stimulating hormone) and a measure of free thyroxine (T4).
For those who may not have caught up with the wisdom on thyroid patients and a growing body of entirely wise practitioners, the TSH lab test has proven to be the absolutely worst way to diagnose hypothyroidism, besides its use to find the right amount of medication. Far more important is the very test the UK College completely omitted: the free T3. T3 is the active thyroid hormone!
The came the final coup de grâce in the press release:
Patients, doctors and other health professionals are worried that people are being wrongly diagnosed and treated, due to the amount of unvalidated diagnostic tests and ‘natural’ treatments which are being offered by a variety of private individuals and companies. Wrong diagnoses and treatments can be dangerous, either because the wrong treatment can cause serious side effects, or the true cause of symptoms can be left undiagnosed and untreated.
Sadly, the danger is in using only one of five thyroid hormones, and forcing patients to live for conversion alone, resulting in a continuation of hypothyroidism in each patient’s degree and kind, sooner or later.
A concluding paragraph by Janie
In the 1600’s, Galileo was the first most prolific voice to proclaim that the earth revolved around the sun (Natural Desiccated thyroid), in contrast to the firmly held position that the sun revolved around the earth (Thyroxine). He was denounced as being dangerous and heretical. Looks as if the UK Royal College of Physicians has a 17th Century mindset….
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** I wrote about it in the news media here: http://www.opednews.com/articles/The-Royal-College-of-Physi-by-Janie-Bowthorpe-090210-698.html
Are you from the UK? Tell us what you think.
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11 Responses to “What in the world is the UK’s Royal College of Physicians thinking??”
Catherine Boyle
I live in the uk and my parents desperately need to see Dr Gordon Skinner. The GP is refusing to refer them. Can any help please?
(From Janie: Join NTH EUROPE for help on this. The link is found here: https://stopthethyroidmadness.com/talk-to-others The group also lists the TPA-UK group.)
Lucy
Thanks Janie, for highlighting this issue, and thanks for taking an interest in the plight of we UK thyroid patients!
One awful thing is that each pronouncement like this from a medical body makes it harder for even sympathetic doctors to act independently in what they see as their patients’ best interests. I am hypo patient in the UK. After diagnosis I took thyroxine for a year and unlike others I didn’t have a terrible time on it, in fact for the first few months I did pretty well. But as my symptoms started to return, I began to research treatments and became interested in trying Armour. Rather than dismissing me out of hand, my GP actually agreed. However, after looking into the practicalities, she was told that her licence could potentially be at risk should anything untoward happen to me. She said while she herself was satisfied that there was no risk – so much so that she was happy to monitor me while I obtained NT extract privately – she couldn’t put herself in that position. And a statement like this one from the Royal College of Physicians, while it may not (yet) be legally binding, is only going to make it harder for a like-minded doctor to do even as much as this doctor did.
I count myself fortunate that I am able to obtain my Armour through private import. As Poppy says, the idea that even this non-ideal situation may be under threat is a terrifying one, and I dread to think of what might happen if it were taken away.
And as Louise says, the attitude of ‘mainstream’ medicine to thyroid disorders is frankly bizarre. It’s as if clinical evaluation and the concept of a choice of treatments go out the window the moment a thyroid patient walks into the consulting room. Imagine if that patient, rather than being a thyroid patient, was consulting the doctor about chronic headaches, and the doctor prescribed, say, ibuprofen. A week later the patient returns, and says that the headaches have gone, but that she’s been suffering stomach upset from the ibuprofen. Or maybe the headaches are a little better, but she’s still having some pain. But rather than sympathising, and saying “well, there are other pain meds we can try – perhaps paracetomol will be easier on your stomach”, the doctor just says “well, you’ve had the approved treatment. You’ll just have to learn to live with your headaches.” Or perhaps “You can’t still have a headache. This is the standard treatment, and it always works.”
Or let’s suppose there really was only one kind of headache medication. Would doctors really refuse to entertain the idea that other treatments might be developed? That if there was another treatment, it shouldn’t even be researched?
Such a situation would be inconceivable to most. So why is hypothyroidism different? Follow the money, I suppose. And the fact that it’s a condition that affects predominantly women possibly has something to do with it, too. “What’s that? You feel so much healthier on treatment X? Oh, no, that can’t be right. Don’t you worry your little head about it – we’ll tell you when you feel better.”
poppy
I don’t know what this will mean long-term for me. I take armour and have been sourcing it privately for over 18 months. This obviously raises fears that we may struggle to source armour from outside of the UK as clearly this is an attempt to gag and control ‘rogue’ doctors and patients alike.
I say we march on parliament BEFORE we all run out of armour.
Jackie
This is devastating news. Some people on the Thyroid-Disease.org.uk forums have filed a ‘yellow card’ report at http://yellowcard.mhra.gov.uk/ giving details of the side effects (or non-effects!) they experienced on thyroxine. I have just done this too.
Let’s everyone file one of these reports, then at a later point we can ask for data on side-effects of thyroxine-only treatment, which they will have to provide …
Jackie
Sue Chippendale
It isn’t just those that will no longer be able to be prescribed Armour. The “halfwits” have also stated that hypothyroidism will only be diagnosed by blood test results. This will effect thousands of people as their TSH is under 10.
They want to push our private docs with common sense out and the next thing we will hear is that we can no longer import Armour!
It is a very sad time in the UK but even with the tiniest bit of energy that we have, we will fight these “Endonobs”
Georgiana
I have perused through your site quite a bit. First time to post…
OMG! I am SOOOO glad I don’t live in the UK! Those poor women! I thought I had it rough worrying about whether I’ll be able to get my doctor to increase my 60mg/day Armour dosage.
And I want to know, what side effects? What in the blue blazes could possibly be worse than sleeping 16 hours a day, gaining weight uncontrollably, losing chunks of your hair while your scalp scabs and bleeds, having difficulty breathing, tachycardia, etc.???
(BTW, the first medicine I took was Synthroid. It made my period a week late, and for that whole week I could barely walk I was in so much agony. I begged my doctor for something strong, like Percocet, to no avail. Finally, when she switched me to Armour my periods went back to normal.)
Marianne
I am devastated by this. It goes to show you that doctors can’t be trusted one inch simply because they will not bend or look at the evidence. It is very worrying when you look at it on the grand scheme of things. It also suggests some sort of conspiracy?
So many of us are getting well on natural dessicated thyroid. You would think that they would at least acknowledge this. After all we should have freedom to choose our treatment as it is a basic human right.
By making statements like this, they really are playing God
Monica Koziol
I agree with nutralady2001!!! Sadly, most “doctors” are poor diagnosticians!I have to say that these “powers-that-be” are truly ignorant if they say there is no substantive evidence of how dessicated thyroid is far superior to a synthetic hormone.
This is what Dr. Ray Peat had to say in an email to me:
“In the 1970s I found that the major journals don’t publish any studies that contradict some of the basic doctrines of the medical-pharmaceutical business, so I wrote books, taught courses, wrote for alternative journals, lectured to medical groups, and started my own monthly newsletter (1981-2001, subsequently bimonthly). I still often talk on small alternative radio stations, but as the word spread regarding my work with estrogen and polyunsaturated fats, even the alternative medical outlets were no longer open to me.
The internet is the closest thing to a public forum that there is. The HUNT study’s important findings about thyroid and heart disease were already very well worked out in the 1930s. By the late 1940s, the drug industry had started creating their own mythologies regarding thyroid, cholesterol, and heart disease, at the same time that the estrogen research of the 1930s was being turned on its head, with fraudulent articles planted in the mainstream journals. Their methods were worse than the tobacco industry’s, and the health consequences were just as deadly.”
http://raypeat.com/
FYI
Deborah Haddock
I am from the UK and I have just terminated my membership to the British Thyroid Foundation because of their blinkered view on the treatment of hypothyrodism in light of the report mentioned. BTF told me that they have a duty to their members and the public not to support anything that has not been “scientifically proven” as a treatment.
I do not need a scientist to tell me that in the last 12 months since I stopped taking thyroxine and started taking Armour I look and feel better than I have done for nearly 5 years. Thyroxine did not help me with my hypothyrodism infact it made it worse. I was taking 250 mcgs a day and still felt awful.
My doctor is very supportive of me taking Armour and I believe it is my right to have the medicine of my choice but I had to ask for it, it is not offered routinely as an alternative to thyroxine in the UK.
I suspect the promotion of a synthetic treatment as the medicine of choice has something to do with the cost …………
Louise
I’ll preface this by saying I’m a skeptic and science nerd. I find nearly all “alternative” medicine sorely lacking in evidence. But I just do not get the obstinate, inflexibly dogmatic approach doctors take with thyroid treatment. Combination T4/T3 therapy, whether through synthetics OR Armour/etc, is not some shonky treatment dreamed up in recent years for quacks to sell. Dessicated porcine thyroid has a very long history of safe and effective mainstream use and I believe there is enough historical and anecdotal evidence to support double-blind trials. It’s a bit like saying that penicillin is no good anymore because we have newer antibiotics. If bought from reliable, regulated sources, I can see no evidence that it is significantly less stable or consistently potent than synthetic thyroid hormones.
I believe that if someone is feeling well on standard T4 therapy, then it’s their prerogative to continue on that. But if they start feeling ill again, or someone never has a good reaction to the T4, or would prefer Armour, or synthetic T4/T3, they ought have the option. Sadly, doctors are often poor scientists. I always discuss my treatment with a pharmacist, too. They know more about the actual drugs and their uses and interactions.
nutralady2001
The madness not only continues but is getting worse, aided and abetted no doubt my our …*cough* ……….”good friend”………. Professor Anthony Weetman. Let’s give the man a thyroidectomy then put him on T4. He’ll no doubt be signing a different tune not far down the track