Thyroid UK News

What Can I Do If I can’t get Armour?

Thyroid UK is receiving many emails and phone calls from patients really worried because they can’t obtain their usual supply of Armour Thyroid – a brand of natural desiccated thyroid. read more

Thyroid UK Annual Report and Accounts for 2009 is now available.

Click here to download the document (PDF format opens in new window)

10 Downing Street E Petition

Mike Bellhouse has created and received permission for a petition on the 10 Downing Street Petition website. The petition is asking for a full and comprehensive review of the manner in which the NHS treats individuals with thyroid-related diseases.

You can sign the petition here:
http://petitions.number10.gov.uk/Hypothyroid/

New Research Shows Possible link between
Hypocortisolism and Chronic Fatigue Syndrome

A study published in the Psychological Medicine journal concluded that low cortisol is of clinical relevance in CFS as it is associated with a poorer response to CBT. This is something that we have been saying all along so we are extremely happy to see that research may be heading in the right direction.

You can read the abstract here:

http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=7161684

MHRA Discussion on possible Medical Information Website

The MHRA are interested in your thoughts on a possible new website on medicine information. The discussion site can be accessed at www.medinfodiscussion.org.

There have already been many really interesting ideas and comments expressed on the site, with some people already saying such a proposed database could "potentially save lives". Other topics being discussed include: if there were to be a database, should the data be embeddable in other existing sites; and how the database can be made as accessible as possible.

If you haven't had the chance to take part yet, add your voice to the discussion. If you have, do revisit the site and continue the discussion as new ideas and comments are being added daily.

The online discussion is running for another week (closing on 8 March)

Thyroid UK has made some comments and also started a discussion about unlicenced medicines information. You may like to add your thoughts to any of the discussions. You have to register but it takes seconds. Let them know what you want.

Press Release: Medical Research Council

12th February 2010

A formal complaint has been lodged by Professor Malcolm Hooper with the Rt. Hon The Lord Drayson, Minister of State with responsibility for the Medical Research Council (Science and Innovation) about the "PACE" Clinical Trial of behavioural modification interventions for people with Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS).

PACE is the acronym for Pacing, Activity, and Cognitive behavioural therapy, a randomised Evaluation, interventions that, according to one of the Principal Investigators, are without theoretical foundation.

The MRC's PACE Trial seemingly inhabits a unique and unenviable position in the history of medicine. It is believed to be the first and only clinical trial that patients and the charities that support them have tried to stop before a single patient could be recruited and is the only clinical trial that the Department for Work and Pensions (DWP) has ever funded.

Since 1993, the giant US permanent health insurance company UNUMProvident has been advising the UK DWP about the most effective ways of curtailing sickness benefit payments. The PACE Trial is run by psychiatrists of the Wessely School, most of whom work for the medical and permanent health insurance industry, including UNUMProvident. These psychiatrists insist - in defiance of both the World Health Organisation and the significant biomedical evidence about the nature of it -- that "CFS/ME" is a behavioural disorder, into which they have subsumed ME, a classified neurological disorder whose separate existence they deny. Their beliefs have been repudiated in writing by the World Health Organisation.

In 1992, the Wessely School gave directions that in cases of ME/CFS, the first duty of the doctor is to avoid legitimisation of symptoms; in 1994, ME was described by Professor Simon Wessely as merely "a belief"; in 1996 recommendations were made that no investigations should be performed to confirm the diagnosis and in 1999 patients with ME/CFS were referred to as "the undeserving sick".

The complaint is supported by a 442 page Report which addresses areas of major concern about the PACE Trial.

These include apparent coercion and exploitation of patients, flawed methodology, apparent lack of scientific rigour, apparent failure to adhere to the Declaration of Helsinki, the unusual personal financial interest of the Chief Investigator, the vested financial interests of the Principal Investigators and others involved with the trial and the underlying non-clinical purpose of the trial.

The psychiatrists' unproven beliefs and assumptions are presented as fact and trial therapists have been trained to provide participants with misinformation; therapists have also been trained to advise participants to ignore symptoms, a situation that may in some cases result in death.

There are some extremely disquieting issues surrounding the MRC PACE Trial and documents obtained under the Freedom of Information Act allow the full story to be told for the first time.

People with ME/CFS do not seek any special consideration; they simply wish to be treated equally to those who suffer from other classified neurological disorders. As shown in the Report that accompanies the complaint, the MRC PACE Trial clearly demonstrates that people with ME/CFS are not treated equally to those with other chronic neurological disorders.

The Report can be accessed at
http://www.meactionuk.org.uk/magical-medicine.pdf

The MHRA have informed us of an error at Royal Mail in respect of the Yellow Card post delivery service and have asked us to inform our members.

The Medicines and Healthcare products Regulatory Agency (MHRA) is the government agency responsible for ensuring that medicines and medical devices work and are acceptably safe.

As part of its ongoing safety monitoring work, the MHRA and the Commission on Human Medicines (CHM) run the Yellow Card Scheme which collects reports of suspected adverse drug reactions (ADRs).

We encourage everyone – including patients – to use the Yellow Card Scheme to report suspected ADRs and help us identify potential safety issues. Using robust and fact-based judgements we ensure that the benefits to patients outweigh the risks, and take any necessary regulatory action to protect them if there is a problem. Suspected ADRs can be reported online (www.yellowcard.gov.uk) or by post.

Unfortunately, we have identified a problem with the Yellow Card post delivery service and some Yellow Cards have been returned to sender due to an error at Royal Mail. We are encouraging voluntary organisations such as yours to help us cascade this alert to your constituents.

Whilst our data show that most patients reports are made online, if patients have posted a Yellow Card report to us and have either had it returned or not received an acknowledgement letter, we kindly ask them to resend the report. This can be done by reporting online (www.yellowcard.gov.uk) or sending a new Yellow Card.

We have been assured by Royal Mail the issue has now been rectified. Online reporting is unaffected.

We apologise for the inconvenience this may have caused and appreciate patients’ efforts in reporting to the Yellow Card Scheme.

If you or your constituents have any concerns or urgent matters that you wish to discuss, please call the CHM free phone on 0800 731 6789.

Thank you once again for your support of the Yellow Card Scheme.

Susan Frade
Patient and Public Engagement Manager

Medicines and Healthcare products Regulatory Agency
Market Towers
1 Nine Elms Lane
London SW8 5NQ

LDN Political Campaign in the UK

The LDN Research Trust is undertaking a political campaigning effort on behalf of all of those who would benefit from LDN. We now need your help, to enable us, to further help you.

We are asking all LDN users, who are unable to obtain LDN on the NHS, to write a letter to their MP's between February 1st – 6th as part of our campaign.

A template letter can be found at http://www.ldnresearchtrust.org/uploadeddocuments/ldn-letter-template.pdf
if you would like to use it as a guideline.

It is recommended that letters are addressed to your MP's at their constituency office not at their House of Commons address. Be sure that they are addressed by their title which varies from person to person.

Please do not E-mail your MP the written word has a far greater impact.

To find your MP, their postal address and title go to the website below and add your post code.
http://www.parliament.uk/mpslordsandoffices/mps_and_lords/alms.cfm

It would be helpful if you would provide feedback on the replies you receive enabling the LDN Research Trust to evaluate your MP's position and attitude.

Would you also help the campaign by passing this email to those in the UK , you know who are taking LDN.

Thank you for your continued support, helping us to help you and all other sufferers out there.

Together we can achieve so much!

Best Regards
Linda
www.ldnresearchtrust.org

Jayne Crocker is part of a group of individuals dedicated to getting Low Dose Naltrexone (LDN) accepted in modern medicine, and trialled for the myriad of uses it shows benefit for.

LDNNow had a successful petition at 10 Downing Street and are now collecting signatures for the European Parliament.

Dear all,

January is a busy month for us here at LDNNow, due to the success of our petition to 10 Downing St we have a panel meeting coming up on in Southampton at the NIHR to discuss whether there should be further research/trials into LDN, so thanks to all who supported/signed this.

We now have a link set up to collect signatures for LDN to be available to all through trials/research (focussing on the human rights issue) to the European Parliament. I have spoken to the person responsible for approving/disapproving whether petitions go through to the relevant committee which it has, and I am pleased to say we have now worked out a system to collect signatures. Due to technical difficulties they have requested we set up the petition link and forward all signatures to them (they were having technical difficulties in Dec and don’t know when it will be resolved).

The person I spoke to who is in charge of approving petitions has heard LDN is now making “big waves” (her expression) and a friend of hers has MS and knows all about LDN. So please if you can take half a minute and add your signature that will be great. All that is needed is your name and email address and anyone can sign in the world. We got over 13,000 signatures for the 10 Downing Street petition (which only British citizens can sign), so please support this important campaign and add your name to the list. It literally takes 30 seconds. I believe they will be discussing the petition at the end of January so if you can pass the link on to any of your family and friends that would be greatly appreciated.

The link is www.facebook.com/l/f87fd;www.ipetitions.com/petition/ldnnow/

Many thanks for your continued support!

McDowell Publishing Company Announces E-Chapters
from The Metabolic Treatment of Fibromyalgia

Dr Lowe’s book, The Metabolic Treatment of Fibromyalgia is now in e-book format, chapter by chapter, which makes it so easy to search for specific sections. Some of the chapters are free:

Chapter 2 – Metabolic Rehabilitation:
http://www.drlowe.com/educational.info/your.guide.to.metabolic.health/
06%20Chapter.2.Metabolic.Rehab.pdf

Chapter 3 – Numbers Count:
www.drlowe.com/educational.info/your.guide.to.metabolic.health/
07%20Chapter%203.Numbers%20Count.pdf

Chapter 7 – Safely Getting Well with Thyroid Hormone:
www.drlowe.com/educational.info/your.guide.to.metabolic.health/
12%20Chapter%207.Thyroid.pdf

The other chapters are available here:
www.mcdowellpublishing.com/echapters/contents.htm

Dr Lowe’s book is the most comprehensive book I have seen on the subject of fibromyalgia and thyroid hormone and I wholly recommend that you take advantage of the free chapters and the other chapters too, if you can.

Statement from Dai Jinn, Chief Science Officer at RLC Labs
Regarding Availability of Nature-Throid

1st January 2010

Pursuant to our conversation last week, RLC Labs, Inc. is ready to release our 1 Grain Nature-Throid starting the week of 12/28. Unfortunately, it may take additional week or so until it reaches the patients depending their location and receipt by their local pharmacies from central distribution centers.

We have received raw materials from our suppliers and have been very diligent going through our approval process. Although the raw materials may be released by the supplier per USP specifications, we will not accept and use any material that does not meet our additional specifications. There are numerous and very involved assay points (other than just T3 and T4 independent values) on the raw material for us to simply initiate manufacturing process. Due to natural sourcing with very stringent pharmaceutical and in-house specifications and tests, we could have as much as 30% - 40% rejection rate of all incoming raw materials. We hold very high regards of our process as our physicians and patients would expect nothing less from our quality control process.

We are seeing release of raw materials from our suppliers but it is still in limited supply. However, we are told and are greatly anticipating full releases within coming weeks to be able to make available all the strengths without interruptions.

We greatly appreciate everyone's patience and support during these difficult times and as indicated throughout, RLC Labs is still fully committed to making sure that there are continued supply of Nature-Throid and Westhroid available.

Dai Jinn
Chief Science Officer
RLC Labs, Inc.

NB: Dai Jinn confirmed to us yesterday (6th January) that their 1 grain dosage of Nature-Throid was shipped out last week. It will still take time to get to the wholesalers etc. but at least it’s on its way!

On-Line Interview of Dr John Lowe
by Janie Bowthorpe of “Stop-the-Thyroid-Madness”

Janie will be interviewing Dr Lowe on 7th January around 8:00 PM Central Time, 9:00 PM Eastern Time, 7:00 PM Central Time, and 6:00 Pacific Time. Anyone with a computer and Internet access can join the show live but a recording will also be available after the interview.

For more information go to: http://www.drlowe.com/emailnewsletter/2010archive1.htm
and
http://www.stopthethyroidmadness.com/2010/01/04/dr-lowe-is-coming-to-our-party-listen-directly-or-ask-him-questions-one-on-one/

A new website has been set up to spread the word about Low Dose Naltrexone (LDN). LDN has been found to be very helpful for MS symptoms as well as symptoms of fibromyalgia. If you are interested in reading about LDN go to their website:
www.LDNAware.org

Who Sees What?

Are you interested in your patient records? Do you think certain people should not see them or do you think electronic patient records are an excellent idea?

Who Sees What? (http://whoseeswhat.org.uk/) is a project where you can learn, discuss and decide all about how the NHS uses your medical records.

Who Sees What? is an innovative project to help people from all over the UK learn about, discuss and decide about the way that the NHS uses their medical records.
The patient records system in the NHS is set for dramatic changes over the next few years as part of a massive IT programme. The new system of electronic patient records has the potential to transform the relationship between patients and the NHS and to deliver real improvements in healthcare. But it also opens up new types of risks to patient privacy.

Who Sees What? provides a forum for members of the public to find out about the new systems, and discuss the risks and opportunities. They have produced a conversation game called Democs which is designed to help people with no prior knowledge talk about the plans.

You can find out more about the issues, events where the game will be played or how to put on a game of your own. Some people have very strong views about patient records so make your views known!

To find out more information visit the Who Sees What website http://whoseeswhat.org.uk/

The New Economics Foundation, who are running the game, are trying to get some national publicity for the project and a feature in a magazine. They are hoping to bring together a group of people with different perspectives on electronic patient records, have them play the game, and answer a few questions from a journalist.

They will cover any travel costs and you could remain anonymous if you prefer. If you would like to have an opportunity to get their perspective across contact them on 020 7820 6300.

Thyroid UK has now signed up with The Greetings Card Company to help with fundraising. All purchases made through our website link will help Thyroid UK to support those with thyroid disease.

Through their fantastic website you can chose from an excellent range of Christmas and everyday cards as well as Christmas essentials such as advent calendars, diaries, gift bags, gift wrap and more.
Do take a look!
http://www.charitycards.co.uk/charities/thyroiduk

18/11/2009
Thyroid UK gains Accreditation for Health Information!

We are delighted to be able to tell you that Thyroid UK has now received certification of The Information Standard, a new accreditation scheme for health information.

We have worked very hard to gain this accreditation and it will mean a lot of hard work for the next year, bringing all of our patient information up to scratch with all statements backed up with properly sourced and referenced research.

We are now classed as Founder Members of the scheme and we are the only thyroid support group member – something that we are really proud of.

Now that we have the accreditation, doctors should be giving our contact details to all newly diagnosed patients that come into their surgery which means that we will be able to help many more patients.

Our next step is to inform all the doctors’ surgeries in the UK that we have achieved the accreditation. Before we can do this, we must organise for The Information Standard logo to be put onto the patient information leaflets that have gone through the process. This will take a few days as we have not received the member pack from the scheme owners yet.

Here's Josh, our office assistant, proudly holding our Award

As soon as we have the logo we will be displaying it onto our new documents and onto our website to show patients and healthcare professionals that we now have the accreditation. I attended the national launch of The Information Standard in London at the Kings Fund on 3rd November. It was a packed conference with many charities and NHS trusts, among other organisations, there to see what it was all about. Thyroid UK received an award for being a Founder Member and this award now proudly sits on a shelf in our new office! Thyroid UK is going to be acting as mentor for any other small charities wishing to gain the accreditation and this, too, will raise our profile.

I would like to thank, Louise, Thyroid UK’s Charity Secretary, for all the hard work she has done to enable us to gain this accreditation, many of the hours voluntary. There were times when she and I sat at the table with our heads in our hands, thinking that it was going to be too difficult for us but we persevered and couldn’t be more pleased now! We have worked hard on this because we know that this is going to give Thyroid UK more credibility which will enable us to help more people with thyroid and related diseases. I would also like to thank those who have donated funds, however small, as these funds have helped us gain the accreditation. Without these funds, we would not have been able to afford to go to the necessary meetings in London. Now the hard work really begins! Watch this space!!!

Thyroid Awareness Week
17th - 23rd October 2009

Thyroid disease is an insidious disease, often taking months or years to diagnose. Doctors don’t always think to do a thyroid test. Symptoms are often put down to lifestyle, and many patients with undiagnosed thyroid disease are told to, “lose weight and take more exercise” or are offered antidepressants, which don’t help. This is especially common when the patient is a new mum, a mum with toddlers or a menopausal woman.

Thyroid UK want to raise awareness of the symptoms of thyroid disease. These are symptoms that many women just accept as part of their lot. Women don’t tend to think of mentioning them to their doctor as in Lauren’s case study and in Nicky's case study.

If you have any of these symptoms, make sure you ask your GP for blood tests – TSH, FT4, FT3 and thyroid antibodies!

Thyroid UK Spreadshirt shop is now open!

Thyroid UK has set up a Spreadshirt shop where you can purchase things like T-shirts, bags, mugs, badges, baby accessories and even pet clothing! You can choose to buy items with our logo on, or you can write your own text! Most of the items come with a choice of colour too.

The cost of the items does include a small donation to Thyroid UK, which will help us to continue with our work.

Please go and take a look!
The website address is http://thyroiduk.spreadshirt.net

If you don’t see something already in the shop that you would like to purchase, send us an email to enquiries@thyroiduk.org with “Spreadshirt” in the subject heading, and we will do our best to obtain the item for you.

Letter to FDA and Response – Natural Thyroid Hormone

Julie Cameron’s daughters have written to the FDA about their concerns in regard to the availability of natural thyroid hormone.
Click here to read the correspondence (pdf format opens in new window)

Codex Alimentarius is a law designed to hand over the control
of natural remedies to the pharmaceutical giants.

There are campaigns to stop this happening, one of them being a petition on the 10 Downing Street Website set up by Margaret Rothwell:

We the undersigned petition the Prime Minister to oppose the adoption of the Codex Alimentarius (WHO/UN) proposals for restriction of the presently freely available herb/vitamin/mineral food supplements.

To sign this petition, go to: http://petitions.number10.gov.uk/Vitamins/

The Alliance for Natural Health also have campaigns running and if you want more information go to their website: http://www.anhcampaign.org/index.php

Swine Flu – What to do?

We are all worried about the swine flu. Some of you may have had it already. Dr Sarah Myhill, one of Thyroid UK’s Medical Advisers, has written some information that you may find useful.
Click here to download the article in PDF format (opens in a new window)

Armour Shortages
Have you had problems getting your Armour?

Idis have stated that Forrest are having manufacturing problems (yet again!) but supplies should be coming through shortly. However, we have been here before so if you are in urgent need of your natural thyroid hormone, we suggest you swap over to NatureThroid. NatureThroid is a natural thyroid hormone that is hypoallergenic. You will need to ask your GP to write a prescription in the same way as they do for Armour but NatureThroid comes in 65mgs not 60. If you take your prescription to a chemist with 60mg on it, they won’t dispense it so be careful!

As soon as we have any further news on the supply of Armour, we will let you know.

Thyroid UK New Office Now Open!

Thyroid UK’s new office is now up and running! There was an Opening Event on Saturday 27th June. People who had helped to build the office and people who have worked for Thyroid UK or volunteered for Thyroid UK in the local area were invited.  Lisa Francesca Nand (Chessy) came and cut the ribbon and photos were taken for the local press.

Click here to read more and see the photos

Response from the Royal College of Physicians

Thyroid UK has received a response from the Royal College of Physicians to our letter dated 25th March 2009 in regard to the Statement on the Diagnosis and Management of Primary Hypothyroidism.

To see their response click here

Their response to us was exactly the same as the response to other people who wrote to them.
They have made errors in their letter to us in respect of who they addressed it to and also in respect of wording at the bottom of the references that should have been taken out.  I am sure they will agree with us that this is not very professional.

The Board of Trustees of Thyroid UK have thought about our next step in this situation and have decided that, for now, we are not going to pursue the Royal College of Physicians et al as we feel it would be a waste of our resources at this time.

We believe that we must forge ahead with gaining the accreditation, now called The Information Standard, and other projects we have already planned to change the way people with thyroid disease – subclinical or not – are treated. 

Once we have gained the accreditation, we will be one step ahead of other organisations such as the Royal College of Physicians et al, who will be expected to gain the accreditation and must ensure that any information they put out as patient information is balanced, referenced and shows alternative views, as we have had to do and must do in the future. 

Other organisations and individuals are writing again to the Royal College and we will ask to be kept informed of proceedings so that we can inform you and keep you up to date.

We hope that you support us in our decision and we will keep you informed of how we are progressing with our projects.

Statement from RLC Labs in regard to
Swine Flu and Nature-Throid/Westhroid

RLC Labs have made a statement about the safety of natural desiccated thyroid medication. Click here for the statement (PDF format, opens in a new window)

The Royal College of Physicians have responded to our letter in respect of the joint Statement on the Diagnosis and Management of Primary Hypothyroidism. The response comes from Catharine Perry, Administrator:

“The College has received your letter and papers expressing concern at this statement. We will be reviewing it along with other similar communications and will respond to you more fully within four weeks.

If there are any further points or questions which you would like us to consider, please could you forward these to me either in writing or to the email address below by Tuesday 14th April.”

They have sent copies of the letter to 15 other people including the Rt Hon. Bernard Jenkins MP (we don’t understand why they have not sent copies to the ministers that we sent copies of our response to).

We are not quite sure if they are reviewing the Statement or just all of the responses. However, to make sure that they get the point that patients are not happy, we suggest that, if you feel so inclined, you write to Catharine Perry at her email address: catharine.perry@rcplondon.ac.uk making any comments you feel relevant and asking any questions you want the answers to.

We really must make them aware that we are very concerned at the fact that they are writing Statements/Guidelines without references and also without proper patient representation.

Please copy us in on any emails you send so that we can collate them and use them to fight this.

NICE are consulting at the moment on the Process manual for accrediting producers of guidance and recommendations for practice and we feel that this Statement/Guideline is not good enough to be accredited. Read the Consultation document and make comments – deadline 1st May.

Rebuttal of British Thyroid Association Statement
regarding Treatment of Hypothyroidism

Thyroid UK has great pleasure in telling you that Dr. John C. Lowe, Advisor to Thyroid UK, has written a rebuttal to the Executive Committee of the British Thyroid Association in respect of their 2007 Statement. This rebuttal effectively also covers the Joint Statement ‘The Diagnosis and Management of Hypothyroidism’ dated Nov 2008 which was endorsed by the Royal College of General Practitioners.

We are happy to have played a very small part in the production of this rebuttal and are very grateful to Dr Lowe for his time, effort and brilliance in writing it.

In his rebuttal, Dr. Lowe documents the Committee's unbalanced presentation of evidence and false statements. He believes the rebuttal is necessary so that the Committee's conclusions do not misguide patients and clinicians about the relative merits and demerits of thyroxine and natural desiccated thyroid products, such as Armour Thyroid, Nature-Throid, and Westhroid.

If your doctor has stopped or has refused treatment of natural thyroid hormone or T3, print Dr Lowe’s paper off and take it to your doctor for his comments. Write to your MPs explaining your situation. Send your MPs a copy of Dr Lowe’s paper and ask for their comments on how the British Thyroid Association are allowed to publish statements that are poorly researched and inaccurate.

Send us copies of your letters and we will collect them for our ongoing project to widen the debate on the diagnosis and treatment of hypothyroidism.

To read the rebuttal click here (PDF format opens in a new window)

To read ‘The Diagnosis and Management of Hypothyroidism’ click here (PDF format opens in a new window)

Making Your Donations go 28% Further!

As a supporter of Thyroid UK you will know how hard we work to ensure that every penny we raise goes as far as it can to support people with undiagnosed or diagnosed thyroid disease. Through Gift Aid and Transitional Relief, you can help us make your donations go 28% further and it won’t cost you a penny!

How does it work?
So long as you are a UK taxpayer, Gift Aid enables you to boost the value of your donations by 28p for every £1 you give (25p in Gift Aid and a further 3p in Transitional Relief) to your favourite charity.

So, for example, if you decide to give £10 to Thyroid UK, we will be able to reclaim an extra £2.80 from HM Revenue & Customs. It might not sound like a lot, but every penny really does count!

What is more, if you are a higher rate taxpayer, you are entitled to claim tax relief on your donations, enabling you to reclaim as much as 25p from every £1 donated to charity.

What do you need to do?
To donate through Gift Aid, all you need to do is complete a simple declaration (orally or in writing) confirming that you are a taxpayer and that you are happy for us to claim tax relief on your donation.

Just one declaration can apply to all donations that you have made to us over the past 6 years and to any forthcoming gifts you make, until you notify them otherwise.  It is that simple.

If you have donated to Thyroid UK already, we can claim Gift Aid on any donations since 5th May 2008 so if you are a tax payer, it would really help us if you could complete the Gift Aid Declaration form and return it to us.

To donate and to complete the Gift Aid Declaration form click here

Thank you for your support!

I have just been informed by International Pharmacy that there is now a requirement to put the value of medications ordered on the outside of the package on the green customs form.

Previously, it was only necessary to put NCV (No Commercial Value) but this has been causing delays. Hopefully, further delays will not happen but if you do have any problems with obtaining your imported medications, please let us know and we’ll see what we can do.

Petition for a European recognition of fibromyalgia disease

ENFA and the European Federation of IASP Chapters are joining together their efforts around fibromyalgia by launching a European petition. They are welcoming everyone to sign this major act of contribution to support the raise of awareness around fibromyalgia.

For more information and to sign the petition go to:

http://www.enfa-europe.eu/index1.php?id=19

Summary of Results of 2008 Medication Survey

We are very pleased to say that we had an excellent response to our survey.

329 surveys were returned although two had to be discounted because the people were taking glandulars, which didn’t count for this survey.

There were some very interesting results such as 29% of our participants are taking natural thyroid hormone, something I think the medical profession will be surprised at.  Also, 66.5% wanted more information on their Patient Information Leaflet with a whopping 99.5% of those asking for more information on food, medications and supplements that affect their thyroid medication.

Another interesting fact was that of the people who were being prescribed medication by their NHS GP, 15% are prescribing Armour.

For full details click here

Dr Hyams is suspended for 6 months!

Dr Hyams sends a message,

“The findings have come as a shock to me. My intentions for my patients have always been to offer them the best care, based on the medical knowledge that I have accumulated over the years. I do wish to thank my family, patients and colleagues for their support during this difficult time.”

One of Dr Hyam’s patients has sent an email to his secretary, Judy Hayman,
“I've been sitting here for 10 minutes trying to take it in and I have no idea what to say apart from I'm so deeply sorry for Dr H. He has done so much for me and I'm just so upset that someone has lost so much by helping me. I can't believe I'm sitting in the  public library typing this in tears. Why do the good guys get attacked? This is not justice...”

Thyroid UK has been watching the events of Dr Hyam’s Fitness to Practice quite closely, as we did with Dr Skinner’s Fitness to Practice. We wanted to do anything we could to help and when I was asked by Dr Hyams’ solicitors to travel up to Manchester to give mitigating evidence on behalf of Dr Hyams on Thursday 26th June 2008, I accepted, hoping that it would make a difference.

They asked me to get there for 9am so I travelled up the day before and stayed in a hotel so that I could get there on time. Other patients were giving evidence too and we all met up for dinner on the Wednesday night.

We were all there on time ready to discuss our evidence with the solicitors. Everyone was called one at a time and as the time went on, I wondered why I hadn’t been called for my chat. Two other patients were not called either. Patients then started being called in to give their evidence and I still had not been in with the solicitor.

Just before lunch, the solicitor came out and called me in, only to tell me that they were not going to use me as a witness. He felt that my evidence (mainly thyroid based) wasn’t going to be helpful as Dr Hyams had been proved on writing an inappropriate advert and using Live Blood Microscopy. His patients who were in the waiting room with me were shocked that I wasn’t going to give evidence and made their views known to the solicitors, however, they still didn’t want me to give evidence.

The solicitors told us that they could not understand why the GMC panel were so against the use of Live Blood Microscopy and that there had been a lot of evidence to show that it was used widely, both here and overseas. However, at the end of the day, it seems that Live Blood Microscopy is part of “alternative” medicine and should not be used for patients.

The GMC were also concerned that patients that went to see Dr Hyams were vulnerable and taken in by him. This is absolutely ridiculous and if I had been allowed to speak I would have told the panel that, in fact, it’s the vulnerable patients who stay with their GP and are told their illness is all in their head. It’s actually the strong patients who look elsewhere for a reason for their illness. None of the patients who spoke on his behalf showed any vulnerability and explained that Dr Hyams had, in fact, changed their lives. Obviously, the GMC Panel did not listen.

Dr Hyams now has to wait to see if the Medical Protection Society will pay for an appeal (the solicitors have said it is being discussed but we all know that discussing and doing are two different things, going by Dr Gordon Skinner’s case).

I do believe that any doctors who use Live Blood Microscopy may be in big trouble now and that they should all get together and discuss what can be done about this. If they don’t, we don’t know who will be next, do we?

30/07/2008
THYROID UK IS NOW
A REGISTERED CHARITY!

It’s taken a long time but we have done it at last!

We have been working towards becoming a registered charity for a very, very long time! First we had to become a company limited by guarantee and for this we had to write our Memorandum and Articles of Association. This is what took the most time as we had to be very careful how it was written. We had many drafts of this!

Once we were a Company Limited by Guarantee, we then had to apply for charitable status. It took us some time to do this as forms had to be signed at Committee Meetings, which we only hold every three months. The Charity Commission asked us to change our Memorandum and Articles of Association to be in line with the new rules and, we are extremely happy to tell you that we are now a registered charity!

Being a charity brings with it rules and regulations in all kinds of aspects and we will need to be very careful to stay within the boundaries but I see no problem with this.

It also means a lot of benefits such as being able to apply for grants to pay for projects and being able to apply for Gift Aid, which will bring us extra money so that we can achieve our objectives.

There will be some changes to our structure in that there will be a membership and we will keep you informed of this as it progresses.

5/05/2008
GMC Attacking Another Good Doctor

Dr Hyams helps many patients with ME and thyroid disease improve their health and I think it is a shocking waste of time and resources to try and prove ridiculous allegations against a doctor who only has the best interests of his patients at heart.

Dr Hyams had his first hearing in October 06. There were three weeks of legal wrangling over the use of patients’ records without their permission, the fact that the Medical Act doesn’t apply in Guernsey and trying to decide which Data Protection Laws were correct. What a waste of taxpayers money! The Hearing was then adjourned to an unknown date in the future. That date was 1st May 2008 and is being held in Manchester – a place some of us know so well!

I am pleased to say that Thyroid UK was instrumental in getting Dr Thierry Hertoghe to be the Expert Witness for Dr Hyams, as he was for Dr Skinner. One of the Expert Witness for the GMC is our old friend, Prof A Weetman.

One of Dr Hyams’ Campaign Team has sent a message:
Could I ask you to spare a thought for Dr. Ian Hyams and his Legal Team when this Case opens on Thursday the 1st May and is due to run for a month.

I am speaking out now as a patient when I say how bitter we feel about this.  What a waste of his talents, having to spend time fighting this case when he could be helping patients.  That’s quite apart from the ludicrous cost of all this.  Are patients complaining? No, just doctors.

Isn't it time the medical profession listened to some of us patients who have been helped to get our lives back together again when we were relegated to the scrap heap by conventional medicine.

There are so few doctors out there who are prepared to try and help us who suffer from chronic health problems.  Why should we be told that no one can help us when we know there are doctors out there who can, and do, help us lead a normal life again.  Why are they being targeted in this fashion?  So many of the Integrated Doctors in the UK are being targeted.  I have said so many times - don't chastise them - clone them.

Dr Hyams has sent a message to all his patients:

Dear Patient

As you all know, the hearing commencement date is imminent, and I wanted to extend my gratitude to you all for your prayers and support. I feel very passionate indeed to defend these unfair allegations and to protect the rights of doctors such as myself to practice Integrative Medicine and also for patients to access Integrative Medicine if they so wish.
I have spent a lot of time with my lawyers preparing our case and I am so grateful to Judy for what she has done in helping with the campaign.

I assure you that I am thinking of you all during this time and I believe that God will give us the strength that we need to get through the next couple of weeks.

Bless you all
Ian Hyams MBChB, LMCC

I will keep you all informed of how the Hearing progresses