Polite request to put pen to paper …

Duly signed.

Signed

So to confirm is it signing a petition to get the NHS to prescribe a non licensed drugs, that has had no clinical trials, or to get the NHS to pay for the trials?

Usually drugs companies jump at the chance to produce a drug/remedy and hence pay for clinical trials. I find it odd that clinical trials have not been completed.

I would be even more worried if the NHS would prescribe an unlicensed, un trialed drug.

I thought randomised, controlled trials comparing combination T4/T3 vs T4 alone had been conducted already?

FunkyDunc – natural dessicated thyroid has been around since I believe the early 20th century, it was the only product given to sufferers at that time as Thyroxine hadn’t been developed. It was literally made up from sheep’s thyroid gland and many people recovered their health. It’s still the same today as it closely mimics the human thyroid, I believe porcine is used too.

So, in answer to your pertinent question, it’s non-licensed and has not had clinical trials. It must be pointed out though that it has never been recalled, the same can not be said for Thyroxine.

vickypea – yes, you’re correct. In an earlier post I’ve said that prescribing T3 is not being sanctioned by the CCG’s due to cost. The Petition also refers to natural dessicated thyroid, see my reply above to FunkyDunc.

So are you not in reality needing 2 separate petitions?

Is T3 a NICE approved drug then that CCG’s are just not funding locally? There must be some process you can instigate with NICE ?

Re the alternative remedy, almost every area of medicine will have an expert / Dr leading research, have you tried to find such an expert in this field in the UK? It surprises me that if a remedy has been around for many years that a medical doctor has not researched it.

Signed.

Sorry about all the question, just trying to understand better- is it research into use of T3/T4 vs T4 alone specifically in the subgroup of patients (including you) whose hypothyroidism is not controlled by T4 alone, that you’re asking for?

Some medical conditions are really neglected. There are no really good treatments for frequent migraine that don’t cause major side effects. No one is interested in developing drugs specifically for migraine.

FunkyDunc – possibly but effectively what is happening is that only one product will be offered for hypothyroidism, namely Thyroxine. T3 is very expensive for the NHS but there is only one supplier. There were supply issues this year with the result that the NHS had to source from abroad and goodness knows what that cost.

The UK thyroid charities have written to the RCP/NICE etc but they are ignored. In the USA the American Thyroid Association have stated that Thyroxine is the only medication for hypothyroidism. Funny how 3 pharmaceutical companies fund that organisation!

Yes, good question in your final paragraph but anyone who speaks up faces consequences. There is a British Professor of Endocronology claiming that if you don’t get well on Thyroxine then you have a somatoform disorder. I personally find this extremely offensive and belittling to all sufferers.

There are insufficient endocronologists specialising in the thyroid within the UK, most tend to specialise in diabetes of which we seem to be reaching epidemic proportions.

vicky – don’t apologise for asking questions! This petition has been set up by a lady who works tirelessly for one of the UK thyroid charities, the one with 20,000 members. No is the answer to your question.

We want more research into the use of T3 as well as natural dessicated thyroid, the latter was the only medication used at the beginning of the last century until Thyroxine was developed.

People like myself are forced to self-medicate and many do well on either T3 or natural dessicated thyroid or the two combined.

Why do you think that nobody is interested in developing drugs specifically for migraine? Do you mean with fewer side effects?

I hope this makes sense, I still struggle with some brain fog hence a lack of eloquence in my posts!

Hello again 🙂
I’m a medical writer so my brain goes into work mode when it comes to this kind of subject!
I don’t know much about hypothyroidism admittedly, but I guess the thrust of my question was this: if a large % of patients with hypothyroidism have their condition managed well on T4 alone, there must be a smaller subgroup who for some reason only respond to treatment with both T3 and T4. For folks who are treated adequately on T4 alone, there’s no point in also giving them T3 as it’s expensive and you don’t want to overmedicate. But you need convincing evidence that for the “smaller subgroup”, T3+T4 is necessary. Were the inconclusive studies on T3+T4 versus T4 alone conducted on a mixed population of people with hypothyroidism who might have been fine on T4 alone anyway? If so, research needs to be done to:
1. Understand why some people also need T3
2. Get conclusive evidence for the best treatment for those people

If I’ve misunderstood and I’m spouting nonsense, just tell me, and I’ll get on with signing!

(I don’t know why there’s such a lack of interest in developing treatments for migraine, but I think the prevalence of migraine and its impact on quality of life is underestimated, and migraine charities receive very little funding to put into research.)

Vicky – thanks for explaining what your day job is, I was wondering!

No no, you’re not spouting nonsense and asking perfectly reasonable questions. I would say that one needs to go back to the beginning and look at the guidelines for diagnosing hypothyroidism. In the UK you may not be treated at all until your TSH goes over 10 whilst in the USA a TSH of over 3.5 would mean that you would be treated.

There is controversy concerning the reference ranges that are used as they’re effectively based on healthy people.

What is a Reference Range?
Reference range is a critical component, and the validity of
the entire TSH test as diagnostic tool depends on it. A TSH
reference range is obtained by taking a large group of
people in the population, measuring their TSH levels, and
calculating a mean value. Supposedly, these people should
be free of thyroid disease, so that the level represents the
mean TSH of a typical thyroid disease-free person in the
population. The reference range is what determines
whether or not thyroid disease is even diagnosed at all,
much less treated, and when it is diagnosed, how it is
treated.

In addition the inventor of the TSH test said that it should be used in conjunction with clinical symptoms. The reality is that it’s used as a stand-alone test hence you can have a ‘normal’ TSH but still suffer from a multitude of hypothyroid symptoms.

Moving on, it’s estimated by thyroid charities that around 15% of thyroid sufferers do not respond to Thyroxine, myself included. This could be due to a huge number of reasons. For example, some people are allergic to the fillers and binders used and would need to try a different brand or it could be due to a faulty gene. But how do you know whether you are allergic or is it due to another reason???

Then along came this published article which actually challenges the current way of thinking. It’s pretty exciting stuff for thyroid sufferers:

http://www.hindawi.com/journals/jtr/2012/438037/

Referring to your point about T3, there are some patients who’ve not responded to Thyroxine and their Endo has added a little T3 whilst reducing their Thyroxine. Some do improve dramatically with this addition.

I’ve found it pretty hard to hit the sweet spot with my meds, it’s taken a lot of trial and error with timings/dosages as it’s taken multiple times per day.

You do raise some very good points and I hope I’ve given a snapshot of the thyroid world where nothing is straight-forward as everybody is an individual. This isn’t always remembered!

Oh dear, I’ve written a sermon. 😳 Sorry!

I’m sorry to read that migraine isn’t being given the attention it deserves. Could the thyroid charities be more vocal?

Oops! Final sentence should read ‘Could the migraine charities be more vocal?’

The concentration of thyroid hormones in Armour Thyroid USP is regulated by the manufacturer to United States Food and Drug Administration (FDA) standards. Despite this, there have been significant problems with the stability of Armour Thyroid in recent years, prompting a massive recall of tablets [3]. Because of these stability problems with Armour Thyroid, there is potential for fluctuations in thyroid hormone levels in the blood of patients treated with Armour Thyroid. These fluctuations may be unpredictable and have adverse effects on patients’ health.

and

Since this initial study, there have been a further seven rigorously conducted (“randomised, double-blind, placebo-controlled”) studies, encompassing more than 900 hypothyroid patients [5,6]. None of the subsequent studies showed a beneficial effect of combined T4/T3 therapy on measures of wellbeing, health and mental functioning. Three of the seven studies show harmful or undesirable effects of the T4/T3 combination.

http://www.quackwatch.org/01QuackeryRelatedTopics/armour.html

Can someone explain to me why we need more studies done on T3/T4 combination therapies if they’ve already been done? Has anyone done a meta-analysis if some papers do actually show a benefit? Has anyone come up with a theoretical framework as to why T3/T4 might be better for some patients?

If there’s actually a controversy here, I’d quite like to carry out my own meta-analysis. I’ve been looking for a topic that I could sink my teeth into, to swag my first publication.

Tom – I don’t take Armour but there are other brands of natural dessicated thyroid. Seem to remember some moans on the Thyroid Forum about it.

quackwatch can not be trusted, check out the founder’s credentials.

I don’t think there’s a controversy with T4/T3 combo, the biggest problem is persuading an Endo to prescribe especially as CCG’s appear to no longer want to fund any T3 regardless of whether your health has been improved.

Sometimes it’s actually easier to self-medicate but you need the confidence to do it. I don’t regret it!

If you’re after something to get your teeth into then why not make contact with the two UK thyroid charities? E-mail in profile if you want contact details.

Tom – you may find this interesting. First ever thyroid injection was carried out in 1891:

http://www.jameslindlibrary.org/illustrating/articles/the-discovery-of-thyroid-replacement-therapy

signed

signed. all the best CG.

Signed

Thanks all, much appreciated. 🙂

quackwatch can not be trusted, check out the founder’s credentials.

Must have missed this. Why is he dodgy in your opinion?

As Tom says, it looks to me like a decent review of existing evidence would be useful. It strikes me that the licensing authorities may have some grounds for their stance – particularly the supply chain standardisation problems.

Out of interest, how much do you think you are paying for treatment/testing?

Here you go Martin:

http://www.quackpotwatch.org/quackpots/quackpots/barrett.htm

As I’ve said before, natural dessicated thyroid has been used since 1891 and many people do well on it. There are a number of other brands beside Armour and these have proved to be consistent in quality.

I suspect it would be impossible to quantify who will do well on which product, certainly there are some common factors.

The article I linked to entitled ‘TSH Measurement and Its Implications for Personalised Clinical Decision-Making’ would be worth a read. The idea that one pill, ie Throxine, will work for everybody is simply not true and people should be made aware of this, ie patients, GPs etc. The one size fits all approach does not apply to the thyroid!

The cost for testing varies, obviously if it needs to go overseas then you’ll looking at mega bucks.

The NHS obviously does some testing but often what happens is that a GP will request tests and the lab won’t do some as apparently they have their own budget. This must be extremely frustrating for GPs to be undermined in this way. However some thyroid patients need other tests which the NHS won’t agree to.

The cost of my medication depends on the exchange rate and, to be honest, many of us fear that this could be clamped down on. I’ve spent a huge amount of money on trying to improve my health from seeing a private specialist, tests, vitamins, minerals, books, 6 months of mega expensive dental work and goodness knows how many hours of research and watching vids.

I’m no longer spending 18 hours a day sleeping so grateful for that!

I have a great deal of sympathy for anyone trying to piece together a treatment plan by traversing the minefield that is the unlicensed or alternative medicine sector. I’m glad that you’ve found a combination that works for you.

Barrett I’m sure has flaws and an obsessional approach to the subject, but surely you can see that the guy behind Quackpotwatch – Tim Bolen – takes that onto a whole new level. Apparently he was a publicist for a naturapath who made some preposterous claims about her ability to cure cancer and AIDS.

Barrett has a fairly detailed rebuttal of all the accusations against him here

Even allowing for a degree of confirmation bias on my part here, I find Barrett a far more reliable witness than Bolen.

It’s a shame that your therapy, which at least has an active ingredient, has been lumped in with all sorts of snake oil and crystal rubbing shite.

I’ve never signed any petition before but I’ve done this one. It’s ridiculous that some therapies can get themselves so tied up in controversy that normal rules cease to apply.

Martin – apologies if I didn’t make myself clear. My meds are not unlicensed nor are they alternative medicine. I strongly suspect that my Endo will not prescribe on cost as the NHS is effectively saying that Thyroxine is the only meds for hypothyroidism hence the current although not blanket refusal by CCGs to allow patients to continue taking T3.

Patients on the thyroid forums are resorting to write to their MPs in an attempt to still get medication prescribed. Some have actually been told by their GPs to buy their own from the internet. 😯

I believe I am the best person to manage and monitor my health rather than being treated as a bunch of numbers on a lab report. Clinical symptoms fail to be taken into account. Nobody asks how I am feeling, they just look at the numbers and comment/argue/disagree with me. I therefore have as little as possible to do with the NHS.

I just want to ride my bike and that is what keeps me going.

OK, sorry – I know you were not taking Armour specifically (which is not licenced for use in the UK), does your brand have a licence? Use of the word ‘alternative’ was a poor choice on my part.

Do you think that the RCTs detailed on the British Thyroid Association statement on this http://www.british-thyroid-association.org/Guidelines/Docs/Armour_nov_07.pdf

were flawed in some way, or too narrow in scope?

Obviously I’m not discounting your statement that quality of life is better for you under your non-NHS drug regimen.

I didn’t want to but I’ll come clean – I take T3 which is licensed. Recommended by private specialist, NHS Endo agreed with his diagnosis and treatment. It’s taken 4 years for me to receive an NHS diagnosis by the way.

First time I’ve seen that paper, thank you for that. I know little about natural dessicated thyroid although I find it fascinating that years ago they used the thyroid gland from sheep, pigs, deer etc.

There are other brands, how they’re formulated I don’t know. All I know is that few people on the UK thyroid forums buy Armour due to its inconsistencies.

I believe that the biggest question that needs to be answered is why are the RCP etc. not listening to thyroid sufferers? Time and time again they’ve been contacted by the UK thyroid charities via letter and e-mail and they refuse to name the people involved in producing guidelines for thyroid patients. Have they something to hide?

Not sure whether you’ve seen this link to the Scottish Thyroid Petition:

http://www.scottish.parliament.uk/GettingInvolved/Petitions/PE01463

Elaine Smith, Scottish MP, has personally been affected by a thyroid condition and had a poor experience thus her involvement in this Petition.

Can I just say that it’s not exclusively women that suffer from this although the majority are but men are receiving poor treatment too.

Edit: just to point out that people can die from incorrectly treated thyroid disease and it does happen.