I recently wrote to the new Health Secretary  regarding the problems we are facing with regard to, not only thyroid disease but also related problems which many of us have seen crop up and need ot be addressed before we can become well again. I included all the refernces we had sent to the RCP last year. The DOH response is below and I am now writing to clarify things further

if anyone lives in his constituency of South Cambridge then please contact me to set up a meeting with him

Dear Mr. Lansley

I have been asked by my members to send you the following info, in the hope that you really can get the health of the nation back on track.

4 years ago I went to a LTCA (prior to their change to National Voices) AGM and the deputy of the DOH said the government were doing just that. They were prescribing more anti depressants, statins, obesity and high blood pressure meds than before. My comment then as now is that this is not the way to get the country healthy when those are symptoms of serious illness, what would help is simply diagnosing and medicating properly those conditions that cause those symptoms in the first place, thus reducing them without the need for unnecessary medication

The NHS would save millions if drs would just diagnose illnesses early instead of waiting for them to become so severe that patients are left unable to work, so not paying taxes and on benefits, with preventable damage to organs, given drugs for symptoms not the cause, not to mention countless unnecessary hospital visits, MRI’s and procedures. For example in 2003 the US reduced the TSH reference range to treat hypothyroidism by half to 3.0 and then subsequently to 2.5 and many other countries have followed suit. Not only have the UK not done this, (despite evidence that it would reduce heart disease, mental health problems including dementia, infertility, ME, obesity, alopecia and other symptoms) but in 2009 the RCP and Society of Endocrinologists actually doubled the range to 10, so it is even harder to be treated and more people are left not working. Drs who dare to treat and make patients well are hauled up before the GMC at more expense. If I tell you that with a TSH number of 4.1 I had to give up work, was bedridden, had dementia, needed a carer, was in severe pain had to close my business and was made bankrupt, this may put the danger and cost of being untreated until the magic number of 10 is reached into context

In Japan the ref range for B12 deficiency starts at 600, in the UK it finishes at 600 they have negligible neuro conditions such as Parkinson, MS and Alzheimer’s, all known to be caused by low levels of B12 (less than 300). This has been proved by a GP in the North East but NICE refuse to make the necessary changes so people can be treated early because they didn't carry out the trial and won't pay for another one. For making his patients well Dr Chandy was brought before the GMC and his patients taken off B12 supplements. They all became ill again. He is now allowed to prescribe but no other Dr in the country wants to risk it

Even the routine testing for and supplementing of Vitamin D, which has now been shown to have it’s lowest levels in the population since the Victorian period due to high usage of sunscreens, would make a huge difference to health. It is not only rickets which is caused by its lack but other problems such as of at least 17 varieties of cancer as well as heart disease, stroke, hypertension, autoimmune diseases, diabetes, depression, chronic pain, osteoarthritis, osteoporosis, muscle weakness, muscle wasting, birth defects, periodontal disease. However any mention to Gp’s and consultants that low levels of any vitamin or mineral may be responsible for conditions is usually met with laughter and derision despite the decades of research showing the ill effects of low levels of many such as folic acid, magnesium, ferritin levels certainly on neurological conditions

The drug Low Dose Naltroxone has been proved to be a cure for Autoimmune disorders such as Crohn's, MS, many cancers, HIV and aids however it cannot be prescribed in the UK because the previous government refused to give it the help to have the correct testing to go onto the National Formulary, it is not made by a multinational drug company so cannot afford to do it themselves, however this shouldn’t mean that such a valid medication , which would save the NHS money shouldn’t be prescribable. As someone with multiple Auto immune conditions, it has been proved to heal, I have been asking my drs and consultants for this for 4 years but have been refused as they are scared as to what would happen if they did, given the threat of the GMC.

From our point of view actually using the NHS, it seems is not in the interests of the drug companies or doctors who get kick backs from them to make the nation healthy, it would cost them dearly if we were just made well and didn't need their extra medication. The points for payments given to drs for prescribing drugs such as statins outweigh the payments given for the prescribing of medications much as thyroxine and natural thyroid extract, therefore there is no wonder drs prefer to prescribe the former.

I have estimated that it cost the country approx £80,000, in unnecessary hospital visits, loss of earnings so not paying taxes and claiming benefits, in the 5 year period it took to get me back to 75% health, the latent damage means I'll never be 100% so this cost increases year on year, I have over 2500 members of my health organisation in the same boat and this is just a drop in the ocean of those who aren't being counted. I would invite you to have a look at our forum and you will see the reality of living in the Uk with a serious health condition in 2010. I have also listed a number of references to studies showing early diagnosis and treatment is preferable. I am happy to discuss this with you at any time, unfortunately I was unable to attend your recent conference with National voices or I would have spoken to you then. We have several members in your constituency who are also facing major problems with regard to their diagnosis and treatment and I’m sure they would be happy to meet with you should you so wish

Regards

Dawn Wood

Chair

Dear   ....
Thank you for your response and for taking the time out to do so.

I will pass your comments re the prescribing of LDN along to those members who are receiving it from private Drs but who’s NHS drs won’t prescribe, as they say it isn’t allowed. I have in fact attended the recent conferences on LDN use and subscribe to the website you mentioned, it was listed in the research websites I included in my email to the health secretary.

I would be grateful if you could clarify the issues with regards to the diagnosing and treating of Hypothyroidism for me, as this wasn’t done in your email. I am aware that the goal of the last government was to improve the care of those with LTC’s and attended a number of conferences to that effect, but as far as the diagnosis and treatment for thyroid disease goes I have seen no evidence of this, in fact a worsening if anything, with the widening of the TSH reference range, to 10 before treatment starts, last year by the BTF and RCP. Thyroid disease in real terms affects 1 in 4 people in the UK and in 2003 The AACE stated that thyroid disease was the 3rd most fatal illness in the western world, which is a serious statistic and a very large sector of society to be mistreated

You are obviously aware that some years ago, after the introduction of synthetic insulin for diabetics, it was proved that a large minority couldn’t tolerate them, becoming ill, and as such a motion was passed in the house to allow the natural insulin to be prescribed in those cases.

The same is true of those with thyroid disease, which is an associated endocrine disorder. It has been proved in research (sent previously) that a large minority do not become well on synthetic thyroxine but are back to full health and working on Natural Desiccated Thyroid, however the BTF persist in saying there is no proof this is true and that NDT’s are dangerous. As they have been in use since the 1880’s, and are not in the NF because they were grandfathered in by dint of being safe, then they are prescribable in the UK and we have a letter for the MHRA which states this, so why is the BTF and the RCP denying this and scaremongering Drs by saying it is an unsafe medication. For many of our members their drs will not prescribe NDT’s as they were told last year by the RCP and BTF that to do so would mean them being struck off by the GMC (members have seen these letters) please can you state this is not true and our members can have NDT’S if they need them.

We also have a case currently where a member in Bolton who has been on NDT’s for several years has been told that he can no longer have them on NHS prescription, because the local PCT has made a policy to this effect. He cannot afford the private prescription, and as hypothyroidism warrants free NHS ones this shouldn’t be necessary, another member has just had her Dr, who did prescribe NDT’s happily, retire and the one taking over refuses to continue, both are now faced with taking synthetic T4, which in the past has not improved their symptoms and in the latter case made him wheelchair bound. I would be grateful if you could give some idea as to what they can do in these situations.

I note you also didn't give a response re the concerns we have regarding the late diagnosis of Thyroid disease. I have recently been invited to the next Westminster Forum debate, which deals with the topic, Early diagnosis and prevention - saving costs, saving lives, being the point I made in my original email. Is this situation going to be improved and will the diagnosis of thyroid disease in the Uk be brought in line with that of the USA and other countries, if not how can the costs of not diagnosing and treating early be justified to both the NHS and the family of the person not being treated

Regards
Dawn Wood
Chair

Our ref: DE00000524629
 
Dear Ms Wood,
 
Thank you for your further email of 17 July to the Department of Health about the diagnosis and treatment of hypothyroidism.  I have been asked to reply.
 
I appreciate your concern about thyroid function blood tests and the prescription of synthetic thyroxine for the treatment of hypothyroidism, but I should point out that the Royal College of Physicians (RCP) and the British Thyroid Association (BTA) are independent of Government.  The Department of Health has no plans to ask the RCP to withdraw its clinical guidelines for the treatment of this medical condition.  Nor does the Department have any plans to produce guidance on the diagnosis or treatment of hypothyroidism.  UK Guidelines for the use of Thyroid Function Tests are published jointly by the Association for Clinical Biochemistry, the BTA, and the British Thyroid Foundation. 
 
Doctors are encouraged not to rely too heavily on the results of thyroid function blood tests, but to use their clinical knowledge and an assessment of the symptoms experienced by individual patients in making a diagnosis for thyroid treatment.  Doctors are free to use whatever guidance they feel is appropriate when making a diagnosis.  This includes guidance published in other countries.
 
Armour thyroid extract, which is desiccated pig thyroid extract, has not been approved by the National Institute for Health and Clinical Excellence (NICE).  Likewise, the Medicines and Healthcare products Regulatory Agency has not issued a marketing authorisation for this product.  The current advice on Armour thyroid extract from the BTA is that there is no evidence of a beneficial effect… compared to unitary therapy with thyroxine, and we believe that the findings so far do not offer any advantage.
 
However, NICE guidance does not replace the knowledge and skills of individual health professionals who treat patients.  If a clinician feels that a certain treatment would be particularly beneficial to a patient, he or she can recommend it even if it has not been approved by NICE, subject to the Primary Care Trust (PCT) agreeing to fund the treatment.  
 
The NHS Constitution, which was published on 21 January 2009, states that patients have the right to expect local decisions on the funding of drugs and treatments 'to be made rationally following a proper consideration of the evidence'.  If the local PCT decides not to fund a drug, then it should explain that decision.
 
To underpin this right, the Department has issued a set of core principles to inform the way in which PCTs make decisions about funding new drugs.  Since April 2009, PCTs have been required to put in place clear and transparent arrangements for local decision-making on funding of drugs and for considering exceptional funding requests.  In addition, on 3 March 2009 the Department published good practice guidance for PCTs about the processes they should have in place to make decisions about funding drugs and handling exceptional cases.  The guidance can be accessed on the National Prescribing Centre's website at www.npc.co.uk.
 
In circumstances where a GP is not prepared to prescribe a particular product, in the first instance a person should discuss this further with their GP.  If they remain dissatisfied, they can ask for a second opinion or to be seen by a different GP.  Patients have no right in law for a second opinion, but doctors are advised by the General Medical Council that it is good professional practice for patients to be free to seek a second opinion, and this is enshrined in GMC guidance to doctors.  I have attached a link for your information (see paragraph 16):
 
www.gmc-uk.org/guidance/current/library/witholding_lifeprolonging_guidance.asp#16
 
A second opinion could be set up with a GP's colleagues if he or she is in a group practice, or from another local GP if he or she works alone.  Anyone encountering difficulties with this can contact the Patient Advice and Liaison Service at their local PCT for further advice.
 
Finally, you may be aware that treatment for hypothyroidism is covered in the National Service Framework (NSF) for Long-term Conditions, which was published in March 2005.  The Department of Health has worked with a range of key stakeholders to identify and develop support and practical tools that can help local services and organisations to deliver the NSF.  As part of this work, Regional Clinical Champions have been identified who will work with local NHS organisations and patient groups to promote best practice and support implementation of the NSF. 
 
The Department recently published the White Paper Liberating the NHS, which sets out the Government’s plans for NHS reform and the commitment to deliver excellence and to tackle inequalities.  The Government’s vision for healthcare will necessitate a fresh approach to developing clinical strategies, which will focus on improving outcomes whilst giving maximum freedom to local services to innovate and improve.  The Government has also committed to reforming NICE and moving to a system of value-based pricing, so that all patients can access the drugs and treatments their doctors think they need.  The Department will make further announcements as soon as possible.
 
I hope this reply is helpful.
 
Yours sincerely,