Nine months after putting forward my criticisms of their utterly stupid reasoning for the blacklisting of NDT and the reasons that exist for permission to be given to doctors/endocrinologists to be allowed to prescribe NDT, this is the decision of the local APC. They are, in effect, blaming everybody else for their decision to retain the blacklisting, whilst quoting the results of trials which favour this product and failing to give any reasons why levo (with or without addition of liothyronine) is better than it.
What do you think?
I reckon they are a bunch of cowards who could easily have arranged a trial to take place in the lack of any meaningful reaction from the pharmaceutical companies ie from those who would lose a lot of profits if NDT were to become licensed.
this article made me angry, and i can not afford to be angry\stressed, sorry i could not read much of it!
thank you for putting this on here for everybody to notice.
if NDT is good enough and helping people with allergies to levo... why cant the NHS look deeper into the huge price difference of products from outside Britain and in their own land?
looks to me , they are profiting from pharmacies handout to not doing the price check?! isn't it?
Well, there is c o n s e n s u s' also that levothyroxine is safe and proper despite any evidence from any country.
Interestingly there is no "well-done" studies that shows that levo is better that ndt (or LT4+LT3).
Regarding lack of "high-quality evidence" for the use of DTE, more than 100 years doesn't seem to be enough.
I don't know anything about how levothyroxine was approved in the UK more than that it appeared in BP 1932 but in Sweden, Norway and Finland, where levo was approved in the 50s there were no trials at all and we haven't had any follow-ups either. I guess you have used that, that there haven't been any trials, as an argument. An idea it to ask your authorities for documentation regarding how your UK levo was once approved and how it's been monitored since then.
Regarding " presence of supraphysiological T3 levels" - this is simply not true. The amounts of T3 equals to levels that human have in blood and the production of T3 in the thyroid is not static. As we are thyroid [edited] hormone deficiency - the thyroid produces more T3 in relation to T4 (and this phenomena, the so called experts, calls t3-thyrotoxicosis and treats as ...hyper!).
Regarding...
"It is noteworthy that
the FDA have called on manufacturers of DTEs, which are not FDA approved treatments, to carry
out and submit trials on the efficacy and safety of their products. To date, no submissions have been made. [7]"
... I need to read that reference (7) since I haven't seen this request from the FDA but the authors of this statement are nothing but shameless as there are no such trials made from any levo manufacturer.
We are into looking glass language - words mean what they want them to mean.
"Evidence" isn't observation of people taking it, as such, however many, however long, but purely the results of trials conducted according to their definition of acceptable trials. This completely ignores that some things simply cannot be tested by that form of trial, and that the choice of which trials are done is itself a highly unscientific decision with a huge weight given to funding sources. Further, that even when trials are done, the results are not always accessible to anyone.
In Norway, a clinical trial is about to be conducted to compare NDT and levo. I think I read that this was a large study with 1000 patients involved. To me, it seems a bit many if many different kind of parameters are measured because it takes time.
You and I might be convinced by several small studies that all point in the same direction. The evidence-based medicine brigade insist on a scale that is required for "beyond all doubt" trials - that is, large to huge.
It is good when a large-scale trial confirms what has been seen elsewhere. But we regularly see that one or other large-scale trial was flawed, often many years later. The people involved might simply have missed the flaw. Possibly several smaller scale trials could pick up flaws when one points in the opposite direction to the rest?
It is also ridiculous when evidence is dismissed due to insufficient scale when there simply are not enough candidates! Take one example: reduced sensitivity to thyroid hormone (thyroid hormone resistance). There are so few with this that large-scale trials are impossible. Furthermore, even if the absolute numbers were possible, there are likely several underlying causes (e.g. one of several genes/SNPs).
I totally agree. The reason I'm asking is that the Norwegian trial (I'm not sure when it would begin) is large and I as yourself have seen how large studies are manipulated.
Not many understands and certainly not among thyroid patients in Sweden.
From rumors I've heard about another similar study (that I cant say more about) that should start perhaps this year would also be a large study with 1000 patients. This study would go on for 6! years (as I'm sure the Norwegian one also would take) and conducted by endocrinologist.
I know I feel better on NDT. It has a very long history of effective use.
I don't need any scientific studies to demonstrate it - I am valid evidence that it works better for me than T4 on which I felt constantly debilitated, unable to work and thoroughly depressed.
The manufacturer of Armour Thyroid state that adverse effects, other than those indicative of hyperthyroidism because of therapeutic over-dosage, are rare [10]. Treatment with DTEs has been associated with higher T3 levels and lower T4:T3 ratios compared to treatment with levothyroxine. [11] Raised T3 levels may be dangerous in some patients, especially those with cardiac disease, and may be linked to osteoporosis. Levothyroxine therapy is associated with lower T3 and higher T4 levels, more comparable to healthy individuals.
This is the bit that got me... looks like we're all meant to have low T3... do they know the difference between T3 and T4? It feels a bit like the handmaids tale... science tells us that men can be sterile, but we will carry on believing it's a woman's fault anyway.
Now, there are lot of science that shows how low T3-levels is dangerous to the heart and cells regulation of thyroid hormones in the blood is independent of hormones in blood in many cell types. Last time I checked levothyroxine used as monotherapy doesn't ensure normal levels in blood nor tissues.
But it seem of no matter in their statement.
They now very well what differences there are between T4 and T3. That is our, paitents, major problem to deal with - and their biggest effort's these days to keep the public unaware of.
I'm sure my friend died because of being treated with T4 only but her death will be attributed to HEART FAILURE even though lack of T3 is the true reason.
Me as a good example. I thought I already were knocked out by my hypothyroidism but LT4 proved me wrong.
One explanation seems do be that deiodinase type 2 (D2) is downregulated by LT4 (I'm not clear about the exact mechanism) as D2 is ubiquitinated in a down regulated manner. D2 is found in brain, brown adipose tissue, skeletal muscle etc.
Werneck de Castro et al. (I don't have the link now) are a team among others that showed this in 2015 but others before that. I "don't understand" why this is not mentioned in "our" guidelines.
I've read about deiodinases on NAH but thought it was more about genetics. I was on T4 for six years and feel I was scarred for life literally. I'll check out de Castro.
Thyroid hormones at cellular level work independently of concentrations in the blood and the actions depend on uptake and effux by membrane transporters, conversion through different types of deiodinases at different locations in the cell and thyroid hormone receptors both at nuclear and non-nuclear places.
This - the local regulation by thyroid hornones and dependence of that different cell types work in different ways is totally (!) ignored.
The deiodinisation process is the knocking off of one of the iodine atoms in the thyroid molecule. It has nothing to do with genetics (in general). You start off with T4 (which has 4 iodine atoms) and through each deiodinise process you get T3, then T2 and T1. You need selenium as a catalyst to facilitate this process.
Now Levo is pure T4. What the medical profession seems to ignore is that not everyone can knock off iodine atoms and produce T3 - and therein lies the great fallacy that Levo is the answer to all of your thyroid problems.
Thing is also that the work of our deiodonases depend on the levels of thyroid hormones and that T4, and T3 for that matter, is converted into far more thyroid hormones than rT3,T2 and T1. These metabolites, that are thyroid hormones too have their own activities that also amongst many things have the opposite effects of one another.
This is what I sent to the APC and 8 CCG's. It is my personal opinion, written in a state of restrained rage, so may not always be worded to perfection. I have, in the meanwhile, written a much better letter that will be sent to one or more of the endocrinology charities that make recommendations to the APC's and CCG's. I have yet to see my new TORY MP, who kicked out the old LIBDEM MP with whom I was discussing this matter.
Dear Sir,
PAN MERSEY AREA PRESCRIBING COMMITTEE PRESCRIBING POLICY STATEMENT REF: PS104 FINAL APC BOARD.
The above document, for the “blacklisting” of Natural Desiccated Thyroid (NDT), dated 26th November 2014 and publicly available on the Pan Mersey web site is described as having a “Review date: November 2016”. As it would be ridiculous for there to be any restrictions on those supplying you with “significant new evidence relating to this recommendation”, I, as a patient with a totally relevant chronic thyroid disorder, am using this opportunity to educate you about the “apparent” total ignorance you portray about thyroid conditions. The profound errors in your publication and those produced by others have caused serious damage to me and many thousands of other people. You are therefore in violation of what should be your mandatory duty of announcing publicly all such possibly contentious decisions as this to ensure that you are making the most appropriate conclusions to the evidence you have considered in the eyes of those whose lives you are affecting. Information hidden away on an obscure website that the vast majority of people did not imagine even to exist is simply not good enough by far. These facts alone make you equally guilty, in the eyes of the law, of imposing torture on patients, as those whose opinions you claim to be following. At this point you could easily be considered to quite simply be incapable of making any serious decisions without outside help or even to be totally incompetent.
The full truth, however, is far more damning than this. You have in actual fact made the deliberate decision to eliminate the public’s possible awareness of this very important document purely in order that nobody other than doctors should be aware of its existence. You planned that there should be no interference with the existing cosy relationship between the big pharmaceutical companies and the UK medical institutions which would still continue unhindered. Even worse, based upon the published experiences of many thyroid patients, I have concluded that few, if any, of the qualified medical practitioners who may actually see your document will dare to suggest changing even a single word, let alone have the heroism worthy of a Victoria Cross to criticise any of the recommendations it makes. A few of them know it is unadulterated insanity, the majority remain ignorant of the proven benefits of this readily available alternative treatment. But I am not a doctor. I am merely one of the “cannon fodder” nonentities that suffer the life-changing consequencies of irresponsible decisions such as this.
The 19th November 2008 statement from the Royal College of Physicians (RCP) proudly proclaimed that: “Overwhelming evidence supports the use of Thyroxine [T4] alone in the treatment of hypothyroidism.” Despite my several requests to the Southport CCG (included within Complaint ID 1325) to provide such evidence, which must have had a great bearing upon their decision to accept your ridiculous statement, none has been forthcoming. Others have requested it direct from the RCP and similarly been ignored. That is hardly a surprise to any of us as these words constitute a LIE – no such evidence exists and many trials have actually come out in favour of NDT. Due to the great number of desperate queries and complaints made to the RCP, they have passed responsibility for producing all further statements to the British Thyroid Foundation, who have, of course, continued issuing further lies and misrepresentations of the truth. It is therefore my public duty to give YOU “overwhelming evidence” that your statement, just like that of the assorted medical institutions, is a complete load of unrecyclable garbage. The statement relates specifically to the treatment of Primary Hypothyroidism (PH), so I shall avoid comments about the various other thyroid problems about which you may very well have similar misguided ideas. I believe, however, that ALL thyroid problems are very much misunderstood by doctors in general, probably being caused by their inappropriate medical training apparently designed under the guidance of the big pharmaceutical companies for their own financial benefit.
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As I have no thyroid gland at all following a total thyroidectomy (TT) and extensive radioactive iodine treatment, I
am said by the medical profession to have Primary Hypothyroidism but I would disagree – I simply have no thyroid
gland. I consider that those people with no thyroid are a special case, to be considered completely separately from
“normal” PH cases where the thyroid gland is at least partially operative. I suffered from extensive health problems
for the entire 8 years that I took levothyroxine including kidney cancer and carpal tunnel syndrome. Unfortunately,
although I know very well that levo monotherapy was the direct cause of both of them, I currently have no evidence
to prove the cancer or anything else was so caused – BUT I KNOW IT WAS! My thyroid condition improved
dramatically as soon as I started on NDT and continues to improve even after more than 2 years.
You cannot possibly deny that your decision to “blacklist” Natural Desiccated Thyroid (NDT), using as evidence the
highly selective and misleading “untruths” you have chosen, is a shining but shameful local example of the
conspiracy brought about by the influence of the Pharmaceutical Companies upon the world’s medical institutions.
These companies are renowned for their financial support of doctors throughout the entire world and would suffer a
considerable decline in their profits if NDT were to once again become a mainstream prescription drug in the
treatment of PH as it was for many decades of the 20th century. I would refer you to the book “Deadly Medicines
and Organised Crime, how big pharma has corrupted healthcare” by Peter C Gøtzsche, ISBN 978 184619 884 7.
Amazingly this book received first prize in the 2014 British Medical Association (BMA) book awards in the Basis of
Medicine category. It should be compulsive reading for every existing and prospective medical practitioner.
There is no way on earth that you can “nod” this policy statement through on the review date with just a few
minor updates, as there is a massive amount of contradictory evidence distributed throughout the internet which
proves beyond any shadow of a doubt the exact opposite of what you say in your “Big Brother” proclamation. Yours
is a ridiculously biased view of the true facts. Your worthless words are quite detestable to PH sufferers such as me.
You have deliberately omitted mention of any of this contrary evidence and therefore your statement is NOT a true,
fair or sensible portrayal of reality. What it does do quite successfully is show that you have utter contempt for
anybody unlucky enough to have PH. This is quite alarming considering that, allegedly, the medical “industry”, which
includes you (see below), always demands true and tested facts in any decisions they make regarding the medicines
they authorise or recommend doctors to prescribe.
There exist proven and undeniable facts, that 300,000 people in the UK still have PH symptoms when using
synthetic thyroid drugs and that some, upon discovering the existence of NDT and starting self-regulated treatment
as I did, have recovered. This is sufficient evidence to any sensible person that this much-maligned but quite
miraculous natural product should be fully reinstated rather than blacklisted. The conclusions of the many trials of
NDT and its synthetic counterparts, whose chemical compositions differ enormously, are variable to say the least,
but all have the consistent recommendation that more trials need to be conducted. It is difficult to imagine how this
can ever happen to everybody’s satisfaction considering the decidedly unhealthy, even criminal influence, of big
pharma, who would likely be financing and even dictating the “results” of the trials. The most sensible action that
can be taken is that the UK Government itself should undertake and pay for these trials and monitor them
intensively in order that the correct and much-desired result can be honestly arrived at, which is to licence NDT as a
standard prescription item for all UK doctors who themselves should receive the relevant training that is currently
and unjustifiably denied them.
There is much available evidence from patients to show that those who remain unwell on levothyroxine
monotherapy are often in receipt of multiple additional prescriptions which usually fail to suppress the residual hypo
symptoms. These prescriptions would often never be requested by patients if NDT were prescribed in the first place,
thus saving the NHS millions of pounds, but consequently reducing the profits of Big Pharma! Many sufferers are
also too ill to return to work and depend on Government benefits. I was fortunate enough to have retired before my
TT, but I would otherwise have been forced to retire on medical grounds with a consequential enormous loss of
pension as I would not have had enough energy to withstand my full time career from 2005 until I started taking NDT
(brand Thyroid-S) in 2014. I reached “normal” retirement age of 65 in 2012.
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I have contacted many people and either been ignored, given the cold shoulder or even worse from all of them for
my own efforts to receive NDT on NHS prescriptions. The only person who was honest enough to acknowledge my
need for NDT was Miss Waghorn at the Royal Liverpool Hospital. She was quite prepared to give me private
prescriptions for NDT but needed the agreement of the CCG for financing it to give me an NHS prescription. I
declined the private prescriptions due partially to the extra costs involved and also because I see no logical or
legitimate reason for me not being given NHS prescriptions. I do not understand quite how these facts tie in with the
national agreement that all those patients diagnosed with PH should get free prescriptions for life. Southport CCG
had referred me to her but was unwilling to accept her recommendation as she is an Endocrine Surgeon, not a
Consultant Endocrinologist. Quite why they would refer me to somebody they would refuse to believe is beyond
belief. Quite why I needed to see anybody other than a GP, as stated in your proclamation, simply baffles me.
Totally contradicting my experiences, I have been informed that many prescriptions are currently fulfilled in UK
pharmacies for NDT, some of which I know to be NHS prescriptions. Even Hilary Clinton, the next president of the
USA, has let it be known that she takes NDT. In the name of sanity, do you really believe that her doctor would
prescribe her NDT (Armour brand) if there were the slightest possibility of it doing her any harm? Why am I (and,
apparently, every other resident of “Merseyside”) being treated in such an unfriendly, underhand and dictatorial
manner that defies logic and is positively harmful to our health in total defiance of any version of the Hippocratic
Oath that you care to mention? Those who are on the receiving end of such nonsense believe that the statements of
the American Thyroid Association, the Royal College of Physicians, the British Thyroid Foundation and certain
renowned “experts”, such as Professor Weetman and Dr Mark Vanderpump, positively encourage doctors to
advocate medical malpractice with no possibility of being held to account.
As yet I have been unsuccessful in my 10+ year battle to get the drug I need from the NHS due to the institutional
stupidity such as you are showing and the unwillingness of my GP to inform me that anything other than levo existed
for the treatment of PH. He has been, I believe, fearful of the consequencies upon his career for prescribing it or
even mentioning its existence, although there was nothing to prevent this before your “recommendation” statement
came into force. If it had previously been forbidden, then your statement would have been a waste of time and
effort. Are you prepared to admit that what you do is a waste of time and effort? I am therefore forced to buy NDT
from Thailand but have no desire to continue doing this due to the source being potentially suspect, perhaps even
dangerous, and the possibility of it becoming unavailable or, worse still, illegal. In the knowledge of what levo does
to me, I now refuse point blank to take synthetic products in any form to substitute for my lack of a thyroid and
without NDT I would soon be confined to bed and possibly die.
You should petition the Government to take the action that is so desperately needed, by using some of the
common sense that you must surely possess, but currently ignore, and the following fundamental truths as
evidence. Logically your actions should change the mindset of those whose instructions you are following on how to
treat patients. That is, of course, unless they also are fearful of the actions that big pharma would take against them
if such evidence actually had some effect. The Government is already fully aware of this situation and it has been
discussed and recorded in Hansard (Volume 572, 17 December 2013 No. 95 HOUSE OF COMMONS OFFICIAL
REPORT), but it would seem that they have, predictably, chosen to take no action. You may be under the control of
big pharma either directly or indirectly but it is quite horrific to think that the politicians are as well. The evidence for
it is, however, far more convincing than a single word of your blacklisting statement.
I have listed below just a few of the most relevant documents from the website of the registered charity Thyroid
Patients Advocacy. These should convince you of the utter stupidity you would demonstrate by ignoring all that is
recorded there. You would condemn several thousand sufferers living within this region (and many thousands more
in the future) to continue enduring their ill health for the rest of their lives.
Other websites exist which contain extra and complementary information. You could easily extract many, many
more pieces of evidence from there and hundreds of other locations, including the details of a woman’s suicide
caused directly by long-term and incorrect treatment for her thyroid problem. I can easily imagine that many others
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have committed suicide in similar circumstances, a course of action that you could only possibly understand if your
own life were crippled for ever in such a cruel and unnecessary manner.
The sites include – stopthethyroidmadness and thyroiduk.
Sample documents enclosed:-
1. The future President of the USA takes “Armour Thyroid”, ....”is a healthy female with hypothyroidism”…and ”
is in excellent physical condition and fit to serve as President of the United States.”
2. Conversion to Armour Thyroid from Levothyroxine Improved Patient Satisfaction in the Treatment of
Hypothyroidism
3. Professor Weetman Agrees that Natural Thyroid Extract "Really, Really Works".
4. Improvements in quality of life in hypothyroid patients taking Armour thyroid.
5. Animal Thyroid Extract as Effective as T4 in Treating Hypothyroidism.
6. 20 Studies that Established the Clinical Benefits of NDT.
7. Natural Desiccated Thyroid and Synthetic are NOT the Same.
8. The Great Thyroid Scandal How It Gets Worse!
9. The Best Clinical Guidelines Money Can Buy: A Look at Guidelines Bias and Thyroid Treatment
10. Guidelines, an Official Statement from an MP.
11. More evidence shows Synthroid/ T4 isn’t the only answer.
12. Tick box medicine that fails hypothyroid patients.
13. A Survey Finds Thousands of Patient Counterexamples Disputing the Enforced Proscription of All
Triiodothyronine Containing Therapies.
Further specific criticism of your 4 reasons for blacklisting NDT:
Reason1 - The RCP’s words are simply a recommendation – not an instruction.
It could be said with far greater relevance that levothyroxine is “inconsistent with normal physiology” because it
contains no T3 or any of the other various hormones whatsoever that Nature has refined over several millions of
years and now deems essential for the human body to experience a long and healthy life.
It is common knowledge that porcine thyroid contains a far higher proportion of T3 to T4 as compared to the human
variety. The medical profession assumes that this excess of T3 can cause various health problems. This may very well
be true except for the simple fact that these health concerns are based upon the premise that the natural T3 will
behave in exactly the same way as synthetic T3, but that is totally untrue as the chemical consistency of the two
products is vastly different. Synthetic T3 is a fast-acting product, natural T3 is a slow-release product.
NDT was used for 50+ years without any relevant problems; there are now many thousands of complaints from the
use of levothyroxine (Synthroid in the USA) and many counterexamples to T4 monotherapy are recorded.
The different and additional ingredients in NDT certainly give me and many others great benefit.
There is a group on Facebook, with thousands of members and exclusively for those without a thyroid, which heavily
promotes NDT as being the best medication for members.
I know of nobody who has come to any harm when taking an appropriate dose of NDT.
The Facebook site of the BTF and the website of the ATA were inundated with thousands of complaints when their
statements on the treatment of PH were recently published. Did they take any notice of it? – No! They both simply
removed all of the complaints and did nothing. That really is quite reprehensible.
Reason 2 - There is a complete absence of any sort of evidence supporting the exclusive use of levo.
There is no logical reason as to why no truly representative trial has ever taken place.
There is no incentive for any truly accurate trial to be held. Pharmaceutical companies would sell fewer drugs if NDT
were used more extensively.
Natural thyroid extract has been making patients better since 1894, long before the introduction of synthetic
thyroxine. Thus, the burden of proof lies with you to prove that the synthetic product actually is safer, more effective
and more consistent than Armour/NDT. Otherwise there is no logical reason for it to be replaced.
Reason 3 - The information is “limited” because there are no side effects.
But there are many actual known side effects of levo, perhaps simply because it is not a complete substitute for a
thyroid gland, so why is it deemed appropriate to prescribe it?
Levo may be well-established but it is neither safe nor adequate, as 300,000 sufferers in UK can tell you.
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Levo is synthetic and, as with every such drug, does have side effects, partially because of its chemical composition
and partially because it is lacking in all the other hormones which a normal human thyroid gland produces and which
the human body needs.
Reason 4 - It is 100% insane that a medicine that does work is blacklisted in favour of a medicine that does not work,
especially so when it is based upon cost when both products are reasonably cheap.
It may be possible for me to receive T3/T4 treatment when at the current time, T3/Liothyronine 20 microgram
tablets cost £258.20 for 28 pills according to the August 2016 list at nhsbsa.nhs.uk/ . You will be very
pleased to know that, if ever offered to me, I will refuse this ludicrously priced synthetic medicine in favour of NDT,
the natural product that I know will prevent any residual symptoms of PH. I have no desire for my condition to
worsen yet again due to your irrational rules by taking an inferior medication that poisons me.
You need also to be made fully aware that many of your references are out of date, but that is hardly of any
importance as, now that you are aware of just some of the issues relating to NDT, you will be unable to publish an
update in November and must delete the existing document as it has no credibility whatsoever.
I am sending copies of all these documents to every CCG mentioned on the statement, to my GP and certain other
people to make them fully aware of what I’m doing and to further update Southport’s Member of Parliament, John
Pugh. I will request Mr Pugh to take any actions he deems appropriate within Parliament.
Your hypocrisy shows no limits when I compare your NDT statement to your home web page :-
1. You insist under your “Copyright Notice” upon all the principles that you yourselves have completely ignored
in the decision to blacklist NDT. Words far stronger than “misleading” would be fully justifiable.
2. “We seek to identify and champion the appropriate use of medicines across Merseyside taking into account
cost effectiveness, quality, equity and above all, patient safety.” You may have “identified” these issues but
you then totally ignore them rather that “champion” them.
3. “Ensuring a safe and cost effective use of medicines across Merseyside to increase the health of our
population.” The blacklisting of NDT decreases the health of the population and ensures that several
thousand patients remain ill for the remainder of their lives.
4. “To ensure there is a transparent and fair decision making process.” Your decision is neither “transparent”
nor “fair” as it uses only very selective material that is totally unrepresentative of the true facts.
5. “All medicines are assessed for clinical effectiveness and cost effectiveness so we can ensure best value for
money and full use of resources.” You have failed completely to mention, let alone consider, all the facts
concerning NDT. According to the registrar of Dr. Pureval, a Consultant Endocrinologist at the Royal
Liverpool, he endorses the use of combined T3/T4, which costs the NHS many times more than the £30 or so
per month if I were prescribed NDT on the NHS. “Best value for money”? I don’t think so!
6. It is not exactly easy to find your blacklisting statement on your web site, but when a search is made for
“thyroid” it is rather ironic that amongst the adverts at the top of the page return is one for the website
bigvits.co.uk/ which sells NDT. Whether this is by design or misfortune, I would not know. Not much
use to me, however, as I can buy it far cheaper elsewhere.
To sum up:
1. Your statement on NDT is prejudiced as you have deliberately ignored all the freely available contradictory
evidence.
2. The information you have been given by the medical institutions is also prejudicial and totally misleading.
3. You are possibly in breach of my rights under the Human Rights Act 1998.
4. You are hypocritical by dictating the rules that others should obey, but ignoring them yourselves.
5. You defy logic by blacklisting NDT on the basis of cost, when allowing the prescribing of a T3/T4 combination
which costs far more.
6. You repeat the LIE that there is overwhelming evidence for T4 monotherapy when no such evidence exists.
If you still feel like creating a revised statement, I would refer you to the General Policy statement of the Yorkshire
and Humber Specialised Commissioning Group of September 2010 for some ideas. They at least have the courtesy
and sense to admit that “Whilst it is possible that some patients might benefit from the use of combination
treatment or Armour Thyroid, the parameters identifying such a patient group have yet to be clearly identified.”, but
there are so many errors and so much highly selective information contained within their statement that I cannot
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actually believe that nobody has yet brought it all to their attention for correction (eg “Armour Thyroid is not eligible
to be claimed on the prescription exemption certificate.” which is totally false as it CAN be so claimed). But perhaps
some people actually have done exactly that and been treated in the same contemptuous manner as I have been
treated by the Southport and Formby CCG.
I have more than sufficient evidence in hand to contradict all the additional material concerning NDT which is
contained within this statement and much that shows how illogical other evidence actually is which neither of you so
far mentions. Simply ignoring this letter and attached documents is not an option for you despite it having been the
decision of choice made by the ATA and RCP on their website feedbacks.
Please be aware that at this time I am awaiting your decision as to whether you are now finally prepared to finance
NDT for me following my attendance at the clinic of Consultant Endocrinologist Dr. Pureval at the Royal Liverpool
Hospital on 25th August 2016. I sent you a letter on this matter on 30th August 2016.
I look forward to NDT being fully reinstated and licensed as a medication for those with Primary Hypothyroidism and
those without any thyroid at all. Please keep me fully informed of your decisions and details of what you are actually
going to do about the 100% TRUE facts I am giving you and when these decisions will be implemented. This matter is
tremendously important to me and I shall, of course, keep all those who have expressed to me an interest in this
matter fully informed of your decisions and, more importantly, your actions.
I would appreciate an immediate acknowledgement to this communication by post or email.
Pan Mersey Area Prescribing Committee
Cheshire and Merseyside Commissioning Support Unit
I have written many letters as yours but through a thyroid organisation in my country but we didn't get any answers and that's, together with other's similar efforts is why I've come to the conclusion that 'one question at the time' could be more effective.
Regarding your writing
"although I know very well that levo monotherapy was the direct cause of both of them, I currently have no evidence"
Wow Panda, thank you so much for doing this. Well researched, very impressive. The more we keep hammering them with the truth, hopefully things will change. I too had a total thyroidectomy and depend upon NDT - having gone the horrible Levo route with undereducated Endos.
Well I couldn't get passed the opening sentences! I'd be interested to know if anyone in the BTA has a thyroid problem and finding the 'accepted' treatment is ticking all the boxes!
Well Lyme diagnosis and treatment in the UK was actually discussed in parliament this week in less than glowing terms. So we might get a pig in the air yet. But it will not come from the group think gang that are currently in power.
I know that evidence to the Scottish Parliament has involved submissions on this sort of topic so do we already have evidence based rebuttals? Do we need a data base of research articles arranged by topic that are inclusive enough to consider T3 and dissicated Thyroid work? Is this actually what we should be crowd funding? And given that pharma loves a simple double blind ABA study should we be compiling a comprehensive set of case studies. Yes I know qualitative and all the second class soft research criticisms that go with it. But powerful when in numbers and a well tried and tested way to document the issue.
Sorry that your efforts have been thwarted Panda321 but you have raised the issue. Well done.
I read something about that today and a challenge under human rights legislation for blatant discrimination. Best use it before it goes! You might find it on a search. It was on FB Lyme group I think.
Hypo and Lyme is not a good place to be re treatment and add mould and their heads will explode.
cwill there really needs to be a directive for GPs as the NICE guidelines won't be published until April 2018.
My GP went from being very interested when I divulged my Lyme diagnosis to totally disinterested and obstructive at my next visit. Clearly under orders from the GP Partners after she'd told them. I don't doubt her original genuine willingness to help and yet she's been put in an impossible position which isn't fair.
Well they are always terrified of anything new and as yet not fully explained. Threatens their position to have to admit that they don't know instead of using us as a learning case. I'm interested in the ultrasound and urine test as that will be a game changer for everyone that is passed actue phase. I have an ultrasound and friends that can use it on me so just waiting to read the research and locate the lab. They can't argue with DNA but I'm pretty sure that they will try. Doing mould first and that is woo woo enough for now.
Yes, absolutely cwill . When were you tested and how long do you believe you've had Lyme for? Do you also have mould? Do you mean that you've actually bought your own ultrasound machine?
Did you listen to the 2nd Chronic Lyme Summit? I tried but am struggling with concentration and comprehension.
It says they only looked at TSH and altered the drug accordingly. So what did they learn? Nada. What a crock of sh*t. There are lots of get outs on there though, that GPs COULD use to prescribe.
I always wonder in these trials , how are they comparing the doses . Because if they are going by the conversion charts and given a patient who was on 100 mcg of levo 1 grain of ndt , then for the majority of people in the trial that would likely mean a reduction of effective treatment. Where 78% express a preference , if the trial was done where people could find their own dose by elimination of symptoms , it would likely be 100% preference for NDT.
Just thinking a bit loud here. I might have an idea in this matter.
Two years ago, I wrote a question for our endocrine society in Sweden.
ONE question only (due to my experience that as many questions are asked - there won't be any answers).
I asked my question as a public question (at a blog that I have) "what RCTs are there that proves that patients get healthy from levothyroxine?".
The first answer was that the evidence was published in ATA/ETA guidlines.
So, I answered the endos that I've read the guidelines (I did long ago) but that there were no such evidence.
Their answer was - and we've heard it before - that more sciende is needed (and i blogged about it...).
What was important - and my purpose - with my ONE question - was to expose them/that there are no evidence (admitted by their silence and bla bla that more science is needed).
My idea is
What if we write a question to them - just one question. It would be harder to avoid.
The question should be either two of these
1. What evidence/RTCs is there that proves that levothyroxine is superior to DTE as treatment of
Or
2. As DTE has been used since 1891 witj good results in the treatment of... - doesnt that fact prove it's safety and usefulness as an option in the treatment of hypothyroidism?
Thyras, I'm new on this forum, and have been looking through some of the topics related to hypothyroidism. I appreciate your posts, and marvel at your brain!
Who would you address with your question? Would it be worth a person's time to ask their endocrinologist? Mine certainly has a closed mind...but I'm sure it hasn't helped, now that I think of it, to have overwhelmed him with evidence of NDT's superiority!
If you meant the "one question only" I meant it as a public question directed to the the authors of the statement.
As a public question - say (and now my fantacy goes a bit wild) from thousands of patients - it would not only be hard to ignore since it would be the Only question but it would also be a pretty logic question (referring to my second suggestion) for ANYONE to answer since 120 years kind of speaks for itself.
When "all evidence" is put under someone's nose - that makes you tired and it also makes people confused when absolutely everything is wrong. It's hard to understand that that could possible bli true (which it is). I think it's a waist of time and that One question should be asked at the time.
The questions can, of course, be asked anyone
Make that "evil cowards".
Thanks for all your replies. I'm sure some of these ideas can be thrown at them as their current recommendation includes contradictions, lacks consistency and fails to include all relevant facts. As with their previous document we are not told the truth, rather we are told what the author of the document wants us to believe. As any such recommendation must by definition be impartial and take into account ALL of the evidence, then it is political and has no place in the medical world where only the truth matters.
I have not yet received any personal reply from the APC.
This situation may be tough to crack but I have the rest of my life and I have nothing more important to devote my life to. The stupidity of blacklisting NDT condemns untold numbers of victims to a lifetime of suffering and, as my former director used to say, I do not tolerate fools.
I do not know who wrote the new recommendation but it was certain to be external to the APC, suspect it was somebody from the BTA or similar, perhaps even Professor Vanderpump himself.
I cannot make much sense out of the plethora of groups and agencies working for the nhs. This is how the Pan Mersey Area Prescribing Committee describes itself on its website:
"The Pan Mersey Area Prescribing Committee (APC) is a professional group consisting of GPs, Pharmacists, and other key healthcare professionals. We seek to identify and champion the appropriate use of medicines across Merseyside taking into account cost effectiveness, quality, equity and above all, patient safety.
The Committee is responsible for making recommendations of medicines, especially high cost medicines, across the Merseyside and Warrington footprint.
The Pan Mersey APC believes in the following values:
Ensuring a safe and cost effective use of medicines across Merseyside to increase the health of our population.
To ensure there is a transparent and fair decision making process.
All medicines are assessed for clinical effectiveness and cost effectiveness so we can ensure best value for money and full use of resources."
They controlled the TSH! At .5 I would have hypo symptoms (I have measured this) and at 1.0 I would not be able to function (measured that too)! So right out of the box, I would be ill. Symptoms are directly governed by your TSH level and they fixed that parameter right at the start. That is a variable that should have been able to "float" and which should have been measured throughout the experiment.
Secondly, it is very difficult to get proper trials for NDT, (DTE) because Big Pharma finances the research labs. They are not likely to go anywhere near something which might threaten their profits. Only governments (or billionaires with a thyroid problem!) have the money to do such a trial - and, at least in the US - many of the people in power get kick backs from big pharma for favors. So don't hold your breath for an honest approach to this problem.
Many strands are opening on the contemptible attitude this group of morons have, which typifies the awful treatment that so many of us get and for which so few of us have been able to find the obvious answer - NDT.
NDT is NEVER going to be the perfect answer for us (excepting the few who may prove to have allergic reactions to it) but it is IMPOSSIBLE for any better medication to be made available to us. I have already asked about thyroid gland transplants but that possibility is rather slim.
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Thanks thyras.
Blood test results in advance of endo appointment + what are the MHRA guidelines for NDT?
NHS Pharmateutical Advice: Avoid NDT products updated Jan 2022
For those who take NDT - what dose are you taking?
