Thyroid extract - The End (as still seen by the NHS)

As a follow-up to the recent post by helvella (Thyroid extract - The End) I would like you all to read the following FACTS when consulting your doctor or endocrinologist and then consider whether to ask him/her why you should believe anything they have to say about NDT/Armour when the following is today's reality. I must emphasise that I am NOT a religious fanatic and I last went to church (CofE) in 1979 upon my wedding, which was also attended by 4 of my Muslim friends.

THIS IS THE TRUE FACT:

A healthy thyroid does NOT produce the synthetic chemicals levothyroxine and liothyronine as that feat is 100% guaranteed to be TOTALLY IMPOSSIBLE even for GOD Himself to perform.

Rather, a healthy thyroid produces the natural hormones Tetraiodothyronine and Triiodothyronine.

THIS IS THE CURRENT SITUATION:

It is VERY, VERY misleading using the very same terminology (ie T4 and T3) for them both as that WILL and DOES cause confusion with everybody, and I really do mean EVERYBODY, including the manufacturer of Armour Thyroid itself which refers to this NATURAL product thus: “Armour Thyroid Tablets, USP, contain the labeled amounts of levothyroxine (T4)and liothyronine (T3)”

armourthyroid.com/treatment...

A consultant endocrinologist has stated to me IN WRITING that: "“The active constituents of Armour are levothyroxine and liothyronine”

. I can copy this to any doubter (PM me for a copy) but cannot, of course, print online as name of endo is mentioned.)

The NHS is told by its contractor SPS that: "“Desiccated thyroid extract is derived from porcine thyroid gland. One grain contains 38mcg levothyroxine (T4) and 9mcg liothyronine (T3) per 65mg of the labelled amount of thyroid.”

sps.nhs.uk/wp-content/uploa...

After informing NICE of this LIE, I was informed by them that: "NICE cannot be held responsible for the contents of published resources produced by other organisations." They also appear to be quite complacent to accept the LIE as being true, despite my protestations, as no correction of this LIE has yet been made.

(Again, can produce copy of email to any doubter, and my protestation, but cannnot print online, PM me for a copy ESPECIALLY if you are from NICE, happen to be a doctor or a journalist and wish to contact me by email, phone, letter or personal interterview).

Moreover a normal thyroid also produces many other products as a matter of course for use in the body. To deny the body of these hormones could be interpretated as a declaration of that denial coming either directly or indirectly from a Divine Being (only the good ones!) as it is totally unnatural. It is guaranteed to cause problems, as witnessed by the many thousands of thyroidless victims, like myself, who complain constantly and fruitlessly (until we read forums such as this or TPA, which are patient-led as opposed to being from any "official" source) that we are getting the wrong medicine, are ignored and left to our own devices. God (in a generic sense of course) alone, it would seem, says that we need these extra hormones and I, for one, have 100% faith in His actions.

I no longer have any faith left whatsoever in my doctor unless he will publicly declare himself to be God and I doubt he will ever be prepared to do that. The thyroid may actually produce other hormones solely only upon the occurrence of certain infrequent problems it detects elsewhere in the body and which are not even SUSPECTED of being in existence, let alone being examined for what use the body actually makes of them.The absence of them can only be denied by God Himself, so you profess yourself to be God if you make a denial of that possibility. As the source of the denial on NDT is from your doctor, then the instruction for that denial has only one possible source, far LOWER than big paharma

Do YOU have more faith in YOUR doctor ( who is under instructions to tell everybody with hypothyroidism to "take this little pill and you will be perfectly healthy again," than you do in God Himself, who created this world and everything in it and about which we actually know so very little?

[helvella]

In 1932 Thyroxine sodium was listed in the British Pharmacopoeia. This was derived from pig thyroids.

The levo- prefix is used simply to be absolutely clear which enantiomer is being referred to.

If you have a problem with the naming, perhaps it should be directed at the synthetic product?

[Hidden in reply to helvella]

I have no problem with the naming of either of them as long as there cannot possibly be any confusion by the reader as to exactly which product is being referred to.

The synthetic form is now known as levothyroxine, that is the name the doctor writes on prescriptions, and therefore that name should never be used to fool people into believing it could ever be a part of the natural product. The fact is that people are made to believe a LIE and that is unacceptable.

There exist correct and perfectly acceptable names to refer to the natural hormones, as mentioned above. If the manufacturers or anybody else have no intention of deceiving people, then those are the names they should use. From the fact that they do can be drawn only a single conclusion. I have no clear idea why they should ever want to do that, but the fact is that they do it. It seems perfectly logical for me to believe that the very reason they are doing this is to encourage people to keep taking levothyroxine and not get well again by switching to NDT. Those who are made well by taking the synthetic products are never likely to bother looking for any alternative medication.

It is not exactly unknown for Forest Pharmaceuticals and other drug companies to ignore the law. A case reported by the FDA where FP was fined $313Million in 2010, mainly related to the synthetic thyroid drug “Levothroid” but also included charges relating to “kickbacks including expensive meals, lavish entertainment and cash payments disguised as grants or consulting fees” according to the St. Louis Business Journal. Carmen Ortiz, U.S. Attorney for the District of Massachusetts, said this: “Both the criminal and civil cases were predicated upon the fact that Forest Pharmaceuticals made a calculated decision to place a higher priority on increasing corporate sales than on complying with the basic, legal requirements that Congress and the FDA created to protect the American public”.

I do not think it is in anybody's interests to try to justify the words of any manufacturer if the very intention of those words is that they should be interpreted by the average person in a totally different way.

[Clutter]

Panda321,

I think it is wrong to suggest that people should equate faith in God, who they may or may not believe in, with trust in their doctors, who may or may not be excellent physicians, because of the efficacy or not of Levothyroxine.

[Hidden in reply to Clutter]

You may interpret what I suggest whichever way you wish, but having received the non-treatment I have for so long, that is how I feel. I have never had much, if any, faith in religion at all, but that is the direction I now seem to be heading. This opinion has been forced upon me against my natural will.

[Angel_of_the_North]

But chemically Liothyronine Triiodothyronine 3,3',5-Triiodo-L-thyronine Liothyronin all have the same molecular formula: C15H12I3NO4 so how are they different? Perhaps you mean that Liothyronine SODIUM is different from Triiodothyronine. I don't see what G-D has to do with anything.

[Hidden in reply to Angel_of_the_North]

A synthetic chemical cannot be the same as a natural product or it could not be patented.

[helvella in reply to Hidden]

As I have said before, there is no patent on levothyroxine. Nor have I ever found one applicable in the UK or the USA. (I am pretty sure there never has been one in the USA, less sure about the UK.)

[helvella in reply to Hidden]

What is the difference between the synthetic and "natural" thyroid hormones?

We accept the sodium issue as a difference.

We accept that everything else in desiccated thyroid will have an impact.

But what is the actual molecular difference?

[Hidden in reply to helvella]

This subject has been extensively commented upon on the TPA site and is available on there. For those who are not members it can be viewed here, the evidence produced by someone whose job it is to know such things:

thyroid-s.com/natural-desic...

I am not a chemist and my professional qualification is not in the world of medicine, but I have studied law extensively and certainly know very well that a synthetic product is a synthetic product, cannot ever be described as a natural product, will never have the same chemical make-up of a natural product and is only patentable because it is a synthetic product. Nobody can prevent Nature from creating a natural product and it is impossible to take out a law suit against Mother Nature for creating an identical product to one which is produced naturally.

[marsaday]

But thousands do well on t4 synthetic. Can you explain what is going so right here ? NTH is not the answer for many people. It is much more of a system problem and is much more complicated than just using thyroid hormones.

[Hidden in reply to marsaday]

If you are hypothyroid and you do get well again using the synthetic T4/levothyroxine or whatever you may want to call it, then you should be eternally grateful.

BUT the uncontroversial fact is that many do NOT get well on it and never will. Many of those people can easily regain their health by taking NDT, but it is refused to them on account manipulated and false information and various other reasons and is now even being denied to those who wish to buy it themselves by denying them the ability to find readily-available online sources.

These forums are necessary for one single good reason and that is because many of those who suffer from one or more of the vast assortment of thyroid afflictions do NOT get the proper treatment they deserve for reasons that are not medically reconcilable.

[Clutter in reply to Hidden]

Panda32,

Who is denying people the ability to find readily available online sources of NDT?

[Hidden in reply to Clutter]

Last year I could, and did, buy 2 lots of NDT. It is a well-known fact that the method of payment I used then, Paypal, can no longer be used. It seems to be the FDA or similar who is no longer allowing Amazon, Ebay and Paypal to facilitate the purchase of NDT and, I believe, any other prescription drug.

[Clutter in reply to Hidden]

Panda321,

Paypal, Amazon and eBay t&cs have never permitted the purchase or sale of prescription meds via their sites although none of them have been pro-active in enforcing their t&cs until recently.

The Sun ran an exposé on Amazon UK allowing the site to be used for the sale of prescription cancer meds, other prescription meds and Thyroid-S. Amazon cleaned up their own site.

MasterCard and Visa have been withdrawing merchant facilities from pharmacies which aren't signed up to FDA's LegitScript which would mean just about everyone outside of the USA.

You can still buy NDT and T3 without prescription but payment will need to be via Western Union, Moneygram, Orbit Remit or Bitcoin.

[Hidden in reply to Clutter]

Amazon have not completed the task yet. I was led to believe it was the FDA who had forced them to ban such sales, but that is irrelevant in the context of the answer I gave as somebody made life difficult for us all. Never read rags like the Sun after Hillsborough.

[marsaday in reply to Hidden]

Yes, but many people who don't do so well on T4 don't try T4/T3 FIRST. It is unfair to compare NTH with T4 only. I bet a lot of people would do fine with T4/T3 combo. Yes you will still have people not doing well on these hormones and so NTH may come to the rescue.

I just don't like the bandwagon which says NTH is the way to get better over synthetics. I think there is a place for NTH, but it isn't the final answer into getting well.

I do agree we should be able to have more choice. Yes to T4, yes to T4/T3, yes to NTH, yes to T3 only, yes to NTH + T3 etc etc. More options will help to reduce down the people who are suffering, but equally lets look at the bigger picture in terms of metabolic health.

Question for you: Did T4 only not work out for you ? Did you then find help from NTH ? Did you try T4/T3 before going over to NTH ?

[Hidden in reply to marsaday]

I agree, but that excellent idea is not relevant to the point I am making which is that we are being told lies concerning NDT.

[Hidden]

Wishing to be perfectly uncontroversial, I shall simply say that I have never had cause to be thankful for the existence of NICE.

[greygoose]

NDT made me very ill. I'm only well on synthetic T3. And, I'm not alone in that. Many people - especially Hashi's sufferers - find the same.

I really don't believe anybody is lying to anybody - unless it's Big Pharma. Doctors are just ignorant - the way Big Pharma wants them to be - and that's a given. Anybody that has suffered with their thyroid for any length of time know that. It's not news.

[Hidden in reply to greygoose]

I simply cannot believe you are actually saying that an endocrinologist who purports to not knowing the difference between a synthetic and a natural product can actually be simply "ignorant". If he is unaware of that fact, then what on earth did he learn in medical college? I will certainly never bother consulting him again!

I am very pleased that you have at least had the opportunity to try NDT in order to establish whether that natural (but non-human) product could make you well. I doubt very much that this would have been prescribed for you by your doc/endo but at least you have tried it out by some means or another. I can see no logical reason why every person who does not do well on levo alone cannot be offered a trial of NDT.

I am very pleased for you that T3 monotherapy has been able to give you back some decent form of life and hope that you can continue receiving it for life as is your right, on NHS prescription hopefully! The trouble that many are now having getting this product is similar to what others are having getting NDT.

I only hope that all those who do not do well on the levo can also experience the alternative remedies open to them to see if one any are better for the them. But such treatment should be given voluntarily by medics not refused by them and such actions left for the patient to discover all by themselves.

All the best to you and everybody else seeking a solution to your hyper- and hypo-thyroid problems which may or may not mean taking notice of my post, by altering your diet, by seeking alternative thyroid products, taking vitamins, chinese medicines or anything else. Seek out the best solution for yourself if the doc refuses to do anything else except continue to watch you suffer for the rest of your life.

[helvella in reply to Hidden]

Exceedingly unlikely to be on NHS prescription.

[Hidden in reply to helvella]

That is precisely what I want for myself and I will continue to complain until I get it. I will then complain that it should be available to everybody. I wish to make a complete and total nuisance of myself as the current situation is quite ridiculous, unfair and unacceptable.

[Clutter in reply to Hidden]

Panda321,

GPs and endocrinlogists can't be forced to prescribe an unlicensed medicine.

Any of the NDT manufacturers can apply for a licence to supply to the UK. I imagine the cost of application must be onerous and that is what deters them.

[Hidden in reply to Clutter]

I am doing my best to force them to give me an NHS prescription for life for NDT as that is the undoubted solution to my problem and there is no sensible reason why it should not be so irrespective of whether it is licenced or not.

Several people have already told me that it is simple but not necessarily cheap, for any Pharmaceutical Company to get a licence for NDT in the UK. That is precisely what probably every trial involving NDT has recommended for many years. They admit openly that more trials need to take place, so why exactly is nobody taking any notice to conduct appropriate trials and obtain a licence for it?

Clue No 1 - you cannot patent a natural product!

Clue No 2 - The availablity of NDT would make so many people well again that sales of other medications, especially antidepressants, would decrease and reduce their profits. Take a look here for evidence:

blackpoolgazette.co.uk/news...

[Hidden in reply to Hidden]

Hidden going on a slight tangent, the BTA is a non-profit making Learned Society. Does that means they don't receive any 'sponsorship' from industry?

Couldn't find anything about their Accounts, after all folk pay to join with an optional membership of the BTF too. BTF receive sponsorship annually.

Wondering whether it's worth digging around?

[Hidden in reply to Hidden]

Hidden found some 'Accounts' but interestingly they've been running them down over the years. Accounts apparently not required when under £10K threshold.

In 2013 their income was £19K, in 2016 it was £7K. Hmmm.

apps.charitycommission.gov....

[Clutter in reply to Hidden]

Panda321,

I wish you and everyone luck getting NDT prescribed but as I said a doctor cannot be forced to prescribe an unlicensed medicine.

You are confusing licensing a medicine to be prescribed in the UK with patenting a medicine. They are separate issues and not having a patent doesn't prevent the licensing of a medicine.

I expect it is costly to apply for a licence to sell a medication in the UK otherwise I would expect to see the cheaper brands of T3 under cutting Mercury Pharma.

[Hidden in reply to Clutter]

I am not confused at all about the issues you mention. I simply want to get NDT on an NHS prescription and I see no good reason why I should simply give up without a fight. As I have said elsewhere, my complaint to the local APC is now being considered, answer due next month. Please PM me if you want a copy. One CCG has already removed their name from the recommendation, following their receipt of a copy of this letter. I suspect another has serious doubts about continuing their acceptance of it.

If the APC withdraw their recommendation, that does not, of course, mean that I have won. It then simply develops to the next stage, and so on, and so on.....

I would like to think that I can take this as far as it can go, in the UK at least, with everybody getting NDT willingly offered to them on NHS prescription if that is what they need to get them well again, as it most certainly did in my case.

The current situation is intolerable for me; I cannot stand being lectured to by people I consider to be brainless idiots and wish to bring them all crashing down to earth.

If I can do that in my lifetime and consequently be remembered in future time as the person who brought some sense to the NHS, then my life will have been worthwhile.

Sorry for the rant, I have had a bad day, they don't get much worse.

[Clutter in reply to Hidden]

Panda321,

It is not unusual for endocrinologists to know nothing about NDT in the UK because it is not licensed for UK use and therefore not taught to medical students.

NDT is illegal in France so presumably the same applies.

[Hidden in reply to Clutter]

You do not need any medical training at all to realise that Natural Desiccated Thyroid is composed of exactly what it says on the label:

Natural = made naturally

Desiccated = Dried and cleaned

Thyroid = the thyroid gland.

I am not a doctor, have no medical training whatsoever and know nothing about the French health service.

[greygoose in reply to Hidden]

Well, I can believe it. Very easily.

My doctor did prescribe it. I live in France and he was an anti-aging doctor in Paris. As Clutter says, NDT is illegal in France, so I had to go to Belgium for it. You can easily get it on prescription in Belgium. However, other doctors/endos I consulted in France had no idea what it was.

I have to say, you are rather preaching to the choir, coming on here, and saying all that. It's all common knowledge on here. But, thank you for your good intentions.

[Hidden in reply to greygoose]

I may be "preaching to the choir" but the more publicity this sort of information gets, the sooner we may get improvements made. This is likely to be news to any casual visitors to this excellent site.

[amala57]

Just read all this! Isn't one of the reasons some people don't do well on levo thyroxine because of other factors such as leaky gut, hormone imbalance and deficencies? I was hoping NDT would be a magical 'cure' for me. Having studied so much more now I realize this is not the case. I am feeling much better on levo now I've changed my diet and am supplementing.

[Hidden in reply to amala57]

I am glad that you found an appropriate solution to your problem. For many people doing what you have done is great, but for others, especially those without a thyroid, this solution is unlikely to be much use.

The real problem is that EVERYBODY ( with a few exceptions of course) is denied even a trial of NDT on the NHS to establish if that is the answer to the patient's prayers let alone given an NHS prescription for it. And that is not right as it really IS the answer for many people.

On top of that they LIE by trying to reassure you that the active parts of NDT are actually synthetic - that is not simply wrong, it is EVIL!

[serenfach]

What is the difference between God and an Endo?

God does not believe he is an Endo...

[crabapple in reply to serenfach]

Someone had to say it...

[dottydame]

Why, I wonder is NDT so expensive that we cannot be prescribed it on the NHS, when we use the rest of the thyroid donor animals for human consumption?? What do they do with the thyroids that are removed from these animals.???? Just wondering????

[helvella in reply to dottydame]

Usual warnings about accuracy of Wiki articles, but the background of Armour thyroid was in the meat packing company Armour.

See second paragraph of the 1863 to 1950 section here:

en.wikipedia.org/wiki/Armou...

Clearly, anything leftover in terms of thyroid has to be handled somehow!

The USA did suffer a major outbreak of swine disease - Porcine epidemic diarrhea virus, or PEDv - in 2013. That affected supply of pigs. No idea what has happened since.

news.nationalgeographic.com...

This is a more recent summary of pig disease:

aphis.usda.gov/aphis/ourfoc...

[Hidden in reply to dottydame]

One of the reasons given for the blacklisting of NDT by my local CCG was price, the fact that levo is very much cheaper than NDT:

panmerseyapc.nhs.uk/recomme...

My answer to them pointed out that it may be cheaper, but it does not give me any sort of decent health. This is true for 15% of so of all thyroid patients, a fact that they do not dispute.

[Gardenofeden]

I felt like death on NDT.

Feel great on synthetic t4 and t3...ratio 11:1

[Hidden in reply to Gardenofeden]

This sort of proves that the current recommendations are a load of BS. We each need to find the correct medication that cures as best as possible the problems we have, but if some of those products are prohibited, then some of us will either have to remain ill for the rest of our lives or solve the problem by ourselves.

I have refused prescriptions for Armour as they would have to be private prescriptions and therefore cost me 10X more than Thai NDT.

I have also refused an offer of T4/T3 on NHS prescription in same proportion as is in NDT. On the basis that I have no conversion problems and T4 on its own keeps me ill, I had no desire to risk getting the return of my symptoms. Besides which I am intent on getting for myself a supply of NDT on NHS prescription and am determined to succeed as I am right and they are wrong - AND THEY KNOW IT!!! This offer PROVES that they know it.

It is easy to perceive the contempt which the medics have for me when the APC (as mentioned above) has STILL not replied to me with their decision on what to do about my complaint. The decision SHOULD have been taken by them last NOVEMBER! I feel sure they realise that every reason they could possibly give for continuing to instruct the 8 CCG's, for which they make decisions, about NDT will be immediately shot down in flames by me.

[marsaday]

Have you actually tried T4/T3 ? I assume not. What if this makes you well and you have a ready supply on the NHS, life will be sorted for you. You sound like an endo yourself, only accepting one line of treatment, but haven't tried the others.

Path of least resistance has to be the better option for health and wealth.

Take up that trial of T4/T3 and see how it goes. If it doesn't work out pursue the NTH option.

[Hidden in reply to marsaday]

I have not tried combo treatment and never will. It was offered to me a full 2 years after starting on Thyroid-S and I have no desire whatsoever to risk descending to the state I was in after 8 years of levo monotherapy. If it had been offered to me immediately after the RAI treatment, as it SHOULD have been, I would, of course, have tried it with pleasure. BUT, based on the fact reported on several forums and elsewhere, I have good reason to believe that those without any thyroid who can actually regain good health on anything less than NDT are few and far between.

As for your belief that I could be an endo, you could not be further from the truth which is that I was a Chartered Accountant before my retirement. I have no medical training at all even as a 1st Aider. My retirement has been ruined by thyroid goitres and non-thyroid cancer together with associated afflictions such as gout, carpal tunnel and weight problems. The cancer was possibly caused by levo treatment (I cannot prove it of course) and I very nearly died during the operation to remove it. I have grown to hate all those who support the current situation and wish to inflict upon them the same misery that their recommendations have inflicted upon me. That may not be fully possible, but at least I can try my best.

Sorry for the strong words but that is how I feel. I hope you continue to prosper on your chosen medication

[marsaday]

You probably will do better on NTH if the thyroid has been removed BUT wouldn't it be nice to see if T4/T3 worked ok. If it does then it means you have many years ahead of you supported by the local doctors.

As you age you will have more health related issues so being on your own with the NTH may bring issues up which conflict with other stuff. You are going to have more battles ahead i imagine.

It is a shame this is the state of play, but i don't think it is going to get any better. The internet and forum enlightenment has pushed thyroid patients knowledge all for the better. The medical world is much more aware that there is more to thyroid treatment than TSH and T4, so some things have changed. However, there seems to be a monetary view that thyroid treatment has to stay cheap. The NHS is a broken model and needs fully over hauling. More tax won't make any difference. I imagine the model will be changed over the next 20 years because there isn't anymore money, even if we grow and export more. But for now we are stuck with this dysfunctional model. No one has made a proper change really in the last 10 years of campaigning.

So i say see if T4/T3 works. Switch over to the corresponding amount and see how it goes for 2 weeks. If it isn't going to work you will know pretty quickly. No harm in trying. What have you to loose ? Seems crazy not to try if you have another 20 years of life ahead of you.

[Hidden in reply to marsaday]

My body has already received enough harm for me to take any risks. Besides which the "ban" on T3 has since taken effect which effectively means no longer prescribable on NHS for primary hypothyroidism.

I feel sure that my GP, endo, CCG and APC would relish me moving across to T3/T4 which makes me even more determined not to do it. I am doing my best to annoy/confuse/harass/offend/antagonise them all as I possibly can and doing that would take all the pleasure out of the situation for me.

I would love to think I had another 20 years to spend on annoying them all but the facts are that my mother, father and 2 brothers all died at age 74 or less; I am 70 in June!

I wrote the following to the APC yesterday (6th July):

"I have waited patiently for nearly 4 months and would now be grateful if you could finally give me an answer that makes sense to my query regarding NDT/Armour. You must by now be fully aware that the reasons you gave on the recommendation of November 2014 were absolute nonsense. I certainly have been unable to find a single reason why NDT should be blacklisted. It should, in fact, be fully restored to a normal prescription medication as it was for many decades of the 20th century until the medical profession accepted the lies of the pharmaceutical companies that there was nothing better than synthetic T4 for the treatment of Primary Hypothyroidism. Their profits would certainly reduce greatly if NDT were restored to its rightful place which raises doubts in my mind as to the honesty of anyone who supports Levothyroxine Monotherapy to the exclusion of every other possibility available.

I noticed that you have adjusted your web site for other decisions made on 29th March, so can't understand the delay. I also noticed that South Sefton CCG removed their name from the existing recommendation following my submission for a short while, but it has now been reinserted."

I received the following automated reply (perhaps she is a Time Traveller!):

"I am out of the office until the 5th April.

Please contact the Medicines Management Team on 0151 296 7014 or [e-mail] "