An important new paper published in Clinical Endocrinology Journal!
Thyroid UK advisors Rudolf Hoermann, John E.M. Midgley and Johannes W. Dietrich have just had a new research paper published in the Clinical Endocrinology Journal.
Dr John Midgley tells us:
"What it proves is that there is no such thing as a TSH range that is suitable for everyone, and that the range is different according to the effect of independent influences such as age, body mass, size of working thyroid volume and whether someone is on T4 or not.
The T4 therapy range is very much lower than the "normal" untreated and sits around the 1 or lower mark. The 3-4 upper level that works for the normal person is not satisfactory and can indicate undertreatment.
Also we're finding that people with no thyroid working at all cannot easily regain normal FT3 with T4 alone and that TSH suppression often has to happen, and in some people no amount of T4 will regain normal FT3 levels. Recent reviews by the gurus now admit that some people cannot handle T4 only and regain health. Just thought you'd like to know that the avalanche is beginning."
Homeostatic equilibria between free thyroid hormones and pituitary thyrotropin are modulated by various influences including age, body mass index and treatment
Rudolf Hoermann*, John E.M. Midgley†, Adrienne Giacobino*, Walter A. Eckl*, Hans G€unther Wahl‡,
Johannes W. Dietrich§ and Rolf Larisch
Article first published online: 7 JUL 2014
We examined the interrelationships of pituitary thyrotropin (TSH) with circulating thyroid hormones to determine whether they were expressed either invariably or conditionally and distinctively related to influences such as levothyroxine (L-T4) treatment.
Design and methods
This prospective study employing 1912 consecutive patients analyses the interacting equilibria of TSH and free triiodothyronine (FT3) and free thyroxine (FT4) in the circulation.
The complex interrelations between FT3, FT4 and TSH were modulated by age, body mass, thyroid volume, antibody status and L-T4 treatment. By group comparison and confirmation by more individual TSH-related regression, FT3 levels were significantly lower in L-T4-treated vs untreated nonhypothyroid autoimmune thyroiditis (median 4·6 vs 4·9 pm, P < 0·001), despite lower TSH (1·49 vs 2·93 mU/l, P < 0·001) and higher FT4 levels (16·8 vs 13·8 pm, P < 0·001) in the treated group. Compared with disease-free controls, the FT3-TSH relationship was significantly displaced in treated patients with carcinoma, with median TSH of 0·21 vs 1·63 (P < 0·001) at a comparable FT3 of 5·0 pm in the groups. Disparities were reflected by calculated deiodinase activity and remained significant even after accounting for confounding influences in a multivariable model.
TSH, FT4 and FT3 each have their individual, but also interlocking roles to play in defining the overall patterns of thyroidal expression, regulation and metabolic activity. Equilibria typical of the healthy state are not invariant, but profoundly altered, for example, by L-T4 treatment. Consequently, this suggests the revisitation of strategies for treatment optimization.
To view the above summary online, go to: onlinelibrary.wiley.com/doi/10.1111/cen.12527/abstract
The full paper is available for 'Patient Access', which means that:
Patients and/or caregivers may access this content for use in relation to their own personal healthcare or that of a family member only.
To download the full paper in PDF format, click here
Thyroid UK 2014 Conference - Exciting News!
Due to a large donation, we are able to extend the Early Bird booking price of £48 until the end of July!
From 1st August the price will still increase to £59, so don't leave it till the last minute to book!
For more information about the conference, click here or Click here to go to the booking form
Help Raise Funds for Thyroid UK by Commenting
Post a message of support for Thyroid UK on the Small Charity Week Facebook page and we could be in the running to win a cash prize of £200
The rules are:
1. The message is in the form of a comment on the Small Charity Week Facebook page (not a private message)
2. One message to be submitted per supporter
3. The comment must include the name Thyroid UK (this ensures the number of messages for each charity can be tracked accurately)
4. The comment should include a reason why you love Thyroid UK
5. Only messages submitted from the 16th June - 22nd June will be counted
Please support us – it will only take a few seconds! Thanks!
Are you an Hypo-allergenic Cook with a Recipe to Share?
The Vaccine Research Trust, a charity Dr Gordon Skinner established in 1982 is embarking on a major fundraising drive to support research into Dr Skinner's thyroid work. Many of his patients, friends and colleagues have very kindly donated generously and we are looking at new ways of attracting funds to continue this work.
One of our volunteers has very kindly offered to edit a collection of Free From recipes to be published as an ebook and all proceeds from the sale of this book will go to Vaccine Research Trust. I know that many people with thyroid problems develop sensitivity and allergic reactions to different foods, so we hope this ebook will be of great practical help too.
We would be very pleased if you would share your own home-made best recipe for inclusion in The Hypo-allergenic Cook Book, to be published with your name attached.
Recipes should strive to be Free From most of the following: Wheat, Gluten, Dairy, Eggs, Yeast, Soy, Sugar, High Fructose Corn Syrup, food colouring, artificial additives and preservatives. We know it is not always possible to be Free From all of these elements in every recipe but then, not everyone has exactly the same reaction.
It would also be most helpful if your recipe, tried and tested, was accompanied by a photograph of the finished dish, or perhaps the assembled ingredients as an illustration. We will try to include as many pictures as possible.
Recipes and photographs should be sent to:
Thanking you all and looking forward to the tasty delights!
Afshan Ahmad PhD
The Thyroid Summit
The Thyroid Summit is a range of 30 presentations about common medical problems tied to thyroid disease such as Wilson Temperature Syndrome; sex hormones and low dose naltrexone treatment.
Presenters include, Dr Mark Starr, Dr Mercola, Gena Lee Nolan, Jacob Teitelbaum, Dr Brownstein and Mary Shomon among many others.
If you're not aware of a thyroid problem, you could develop psychological, cardiovascular and neurological disorders. Medications for a variety of symptoms will never solve the problem, but optimizing your thyroid hormone with vitamins, minerals, dietary changes and the right medications can.
Some of the presentations are free for a short time buy you can purchase all the talks at a cost of $60. You will need to register but it's well worth doing so - http://thethyroidsummit.com
LDN (Low Dose Naltroxene) 2014 Survey
The LDN Research Trust is running a survey to find out the experiences of people taking LDN and which health conditions they have. To be eligible to take part in the survey you have to be taking LDN.
The LDN 2014 survey is anonymous. Your name, address, email address etc is not required. The results will be published online for everyone to see around the world.
If you would like to take part in the survey please go to: http://fluidsurveys.com/s/LDN2014/
I would like to thank everyone who came to Dr Skinner's Day on 3rd May to celebrated his life and work.
It was a truly memorable occasion where we heard about Gordon the family man from his children Fiona and David and about his work from clinical and research colleagues. Sheila Turner, Chair of TPA and Dr Barry Peatfield gave moving tributes to Gordon and his thyroid work. Fiona his daughter and now Chair of the Vaccine Research Trust informed us of the drive to raise funds to continue Gordon's research into thyroid disease and vaccines. There were friends, colleagues, patients, his Golfing group and French class and everyone had the opportunity to exchange stories about the Great Man.
Many of you kindly gave donations to the Vaccine Research Trust and I would like to thank everyone for their immense generosity.
Thank you again for attending and for your support; it is much appreciated.
Afshan Ahmad PhD,
International Clinical Trials Day - Watch This Video
It's International Clinical Trials Day. It's time all clinical trial results are reported.
Watch the new AllTrials campaign video. And change something.
Results from around half of clinical trials have never been published. Information on what was done and what was found in these trials could be lost forever to doctors and researchers, leading to bad treatment decisions, missed opportunities for good medicine, and trials being repeated. The contributions of the hundreds of thousands of patients who took part in those trials remain unused and unusable.
All trials past and present should be registered, and the full methods and the results reported. Sign up to make clinical trials count. 75,000 people and more than 450 organisations have joined. Public pressure is already changing regulations and getting past trials published in some countries. You and everyone you know can join it at alltrials.net and by sharing this video.
This has to be the last International Clinical Trials Day of the era when trial results are withheld.
Daily Mail Article - Post-traumatic Hypopituitarism
Joanna Lane has written an excellent article published in the Daily Mail on 17th May about the possibility that many patients with CFS/ME/Fibromyalgia are misdiagnosed.
The article discusses Post-Traumatic Hypopituitarism (PTHP) caused by a head injury. Christine Wrighton, who died in 2011 and Jill Mizen both found out that they had hypopituitarism years after suffering chronic fatigue.
There may be many more people with this condition than is currently realised and Thyroid UK is in the process of writing a patient information leaflet about this problem.
Eddie Barker is another patient who was found to have a growth hormone problem after years of ill health. You can read his story here -
Research needs to be done on this topic and then perhaps NICE will change their minds about including the condition in their guidelines.
To read the article go to:
Possible Problems with Erfa Thyroid
Thyroid UK is aware that some people are finding their Erfa Thyroid tablets do not seem to be controlling their symptoms as well. Erfa is investigating this due to the number of complaints they have received. Dr Henri Knafo from Erfa has posted the following on the Mary Shomon forum.
If you have been having problems with your Erfa tablets recently, perhaps it would be a good idea to answer his questions:
As you know we are currently investigating all the complaints that I received and I would like to ask for your help in order to complete the investigation.
1. Do you have a lot number and expiry date written on the bottle of Thyroid ? If so please give it to us.
2. Can you tell us what strength(s) you bought (30, 60 or 125mg) ?
3. Also please mention what pharmacy you bought the product from.
Once this information is received we can go forward with the investigation. Please feel free to email me if you have other questions
Dr Henri Knafo, MD, M.Sc, B.Sc
Email : Henri.firstname.lastname@example.org
Thyroid UK 2014 Conference
National Motorcycle Museum Conference Centre,
Solihull, West Midlands
18th October 2014
We are very pleased to announce the Thyroid UK 2014 Conference!
Our conference, which is being held at the National Motorcycle Museum Conference Centre in Solihull, will give you an opportunity to learn about thyroid disease and related conditions as well as meet up with people you can relate to and enjoy an informative day in this unique venue.
Dr Chris Steele MBE, resident doctor on the This Morning programme, is our keynote speaker.
If you book early, you can take advantage of our 'early bird discount'
For full information, and to book your tickets, click here
Dr Skinner's Celebration of Life
Saturday 3rd May 2014
Message from Dr Afshan Ahmad
We are ready to celebrate the Life and Work of Dr Gordon Skinner on Saturday 3rd May at the Lunar Suite, The Novotel, 70 Broad Street, Birmingham, B1 2HT. We are inviting people to come at 11am for an 11.30 am start and the details of the day are on the programme attached. We expect to complete the day by 4pm. If anyone is still interested in attending please come along.
Please click here to download the programme
B12 Deficiency Petition
Thyroid UK is aware of many people with B12 deficiency who say that their B12 "runs out" earlier than the allotted three months before they can have their next injection.
Tracy Witty, from www.b12deficiency.info has set up a petition to make injectable vitamin B12 (hydroxocobalamin) available over the counter.
If this topic affects you or someone you know, please sign the petition:
Our Government e-petition
2014 - 2015
A Call to Action!
On 23rd April 2014, Thyroid UK re-submitted their Government
e-petition asking for research into T3 and/or natural desiccated thyroid treatment to be funded.
You can view and sign the petition by going to http://epetitions.direct.gov.uk/petitions/64191
So, let's all...
Sign it, share it, Tweet it, FB it, add it to your email signature!
'Fund research into T3 and/or natural desiccated thyroid treatment for hypothyroidism'
To All Patients Of Dr Gordon Skinner
Dr Skinner's clinic closed on the 28th February 2014 but the clinic telephone is still functional on
0121 4498895. If any patient has an administrative query please call 0121 4498895 and if no one is available leave a message and we will return your call.
Once again we thank everyone who has donated generously to the Vaccine Research Trust in Dr Skinner's memory and for your support at this very sad time. We are humbled by your kind messages.
As a separate service, unrelated to Dr Skinner's clinic, Ms Helen Cox (Windsor) is offering support in respect of patients' thyroid health on 07951379649; there may be a minimum charge for this, as and when appropriate.
Afshan Ahmad PhD
Liothyronine Back in Stock
Thyroid UK has been informed that Amdipharm Mercury (AmCo) now have liothyronine back in stock.
The stock should be delivered to the wholesalers by the end of this week so your pharmacist should be able to obtain it the week after that.
Let's hope this doesn't happen too often!
Vote for Fluoride - Yes or No
Public Health England wants councils to consider adding fluoride to drinking water to improve the dental health of children. The Guardian newspaper is running a poll on you want this to happen.
The best place to find information on this subject is the National Pure Water Association
If you want to vote go to:
The Poll closes today though (28th March), so you need to hurry!
Meeting re Organophosphates with Andy Burnham MP
Update to original message (see below) from Dr Sarah Myhill's office:
It has been pointed out that the date for the meeting about the effects of organophosphates on health as originally reported was wrong and so sincere apologies for that error.
The correction comes from the man behind the action, Mr Tom Rigby:
Please note Westminster meeting is on Wednesday, May 14th from 14.00-15.30 in Committee Room 9.
The theme of the meeting is 'Sheep dip saga - 21 years on', if anyone is interested in attending or sending a message of support, please let me know.
Johnsons farm, Lowton. Warrington WA3 1LQ (01942 671020)
With best wishes (and with apologies again), Dr Myhill's team
Dr Myhill would like to publicise the above meeting. This is what the organisers say:
Meeting with Andy Burnham, MP and Sarah McKenzie-Ross, Countess of Marr at Westminster on May 15, 2014 at 2 pm.
One of the purposes of this meeting is to show just how many people have been adversely affected by OPs.
Tom Rigby is a farmer working to raise awareness of the danger of OPs at the level of the Government. He would like sufferers to send him a short message to be read out at this meeting detailing how OPs have affected their health etc. Photos can be sent too.
Please, send your messages as soon as possible to:
Johnstons Farm, Lowton, Warrington WA3 1LQ
Dr Myhill's team.
Liothyronine out of Stock Again
Thyroid UK has contacted Amdipharm Co today regarding problems people are having obtaining their product, liothyronine.
Amdipharm told us that liothyronine is out of stock due to a manufacturing problem and that they hope they will be back in stock by the end of April 2014.
Fundraising with Alan the Ali Man
The lovely Alan Gardner has offered to help us with another fundraising drive!
He collects aluminium in his garden, sells it for scrap and then gives Thyroid UK the money!
The idea this time, is that people pay £1 to guess the weight in kilograms of the scrap he has collected.
If someone gets the weight EXACTLY right, then Alan has very kindly offered to give a prize to that person of the same amount!
If no one gets it spot on, Alan has offered to give a prize of 50% of the amount to the person who gets nearest, without going over and 50% to TUK.
Scrap raises £100.
You guess the EXACT weight - Alan will give you £100
You guess nearest, without going over - Alan will give you £50 and TUK £50
Thyroid UK gets the £1 entries and the value of the scrap.
If more than one person guesses right or nearest, they will share the prize money.
Please note that your guess should be in full kilograms, e.g. 162 kg not 162.2 kg
If anyone would like to get involved with Alan's unique fundraising idea - please do one of the following:
Drop a cheque (payable to Thyroid UK) for £1 (or more if you want multiple guesses) in the post with a note with your name, address, email/phone number and your guess in kilograms to us at
32 Darcy Road, St Osyth, Clacton on Sea, Essex, CO16 8QF
(You can also send £1 coins in the post but Thyroid UK cannot be held responsible if we don't receive them)
Drop me an email with the same details and ALI GUESS in the subject and I will send you a Paypal payment request.
The closing date for guesses is 24th Oct 2014. The winner(s) will be notified during the first week of November.
As usual, a HUGE THANK YOU to Alan for his generosity.
Please have a go and help to raise funds for Thyroid UK!
Official Closure of Louise Lorne Clinic, which was established by Dr Gordon Skinner
Thyroid UK has received this sad news and letter of thanks from Afshan Ahmad.
Gordon R B Skinner MD (Hons) DSc, FRCPath FRCOG
22 Alcester Road
Tel/Fax 0121 449 8895
28th February 2014
At 5pm today Friday 28th February 2014 we are officially closing Louise Lorne Clinic based at 22 Alcester Road, Moseley, Birmingham which was established by Dr Gordon Skinner in 1999 to offer help to thousands of patients who suffered from thyroid disease. Over the years we saw these patients returned to optimal health through Dr Skinner’s ministrations.
Every day at the clinic started with laughter and every day ended with great satisfaction for all who worked here. I feel fortunate to have worked with Dr Skinner as he was an exceptional human being.
Dr Skinner’s unique scientific mind combined with the depth of knowledge and experience of medicine enabled him to treat each patient on an individual basis and provide the care needed for that person. He was an independent thinker and a very courageous man, always standing up for what he believed. Dr Skinner always did his best for the patients and was true to his Hippocratic Oath.
I feel privileged and honoured to have been Dr Skinner’s student, colleague and friend. He has inspired generations of students and colleagues who have admired his courage, determination to seek the truth and uniqueness. The most common comment from patients has been that Dr Skinner gave them their life back - how fantastic to have done that for so many people.
On behalf of Helen Cox, Carol Wright and Helen Gordon I would like to thank all the patients, their relatives and friends for years of friendship and fun and their kindness at this difficult time. We have had wonderful years following patients’ progress some of whom went on to achieve great academic success, marital happiness and babies after treatment. We have been on difficult journeys with some and have been overjoyed by their successes and return to optimal health.
I would also like to thank TPA and Thyroid UK for their help and support.
We will continue Dr Skinner’s work in both thyroid and vaccine research and hope that you will all keep supporting us.
Afshan Ahmad PhD
The Late Dr John Lowe's Presentation
for Thyroid UK's 2011 Conference
Dr Lowe was asked to speak at the Thyroid UK 2011 conference. Because he could not attend, he kindly made a film of his presentation.
Dr John C Lowe sadly passed away on the 9th January 2012 at the age of 65. This film is the last film that he made and is a lasting tribute to his tireless work for thyroid patients. Unfortunately the sound quality is poor but it is certainly worth watching.
For more information and to see the video, click here
Celebration of the Life and Works of
Dr Gordon Robert Bruce Skinner
VACCINE RESEARCH TRUST
Charity Commission Registration Number 326276
22 Alcester Road, Moseley, Birmingham B13 8BE, UK.
TEL/FAX 0121 449 2429
TRUSTEES: Dr Rita Evans LDS RCS, Mr David Skinner MA (Hons), MSc (Hons)
CHAIRWOMAN: Ms Fiona E Skinner BA (Hons)
27th February 2014
You are invited to celebrate the Life and Works of Dr Gordon Robert Bruce Skinner to be held at the Lunar Suite, Novotel Birmingham, 70 Broad Street, Birmingham, B1 2HT on Saturday 3rd May 2014.
We would like to invite his patients, medical colleagues and friends to share in the day and enjoy a series of talks and anecdotes from Dr Skinner's life and further information on how we are committed to continuing the work of this great clinician and scientist with The Vaccine Research Trust.
The day will start at 11am with coffee/tea, drinks and refreshments served throughout the day.
As so many people have expressed an interest in attending please let us know as early as possible if you will be coming.
Our contact details are below and we really look forward to sharing this wonderful day with you.
Vaccine Research Trust,
22 Alcester Road,
Update, late afternoon of Thursday 27/02/2014
The technical problems have been resolved, and we're back online. We do have a backlog to catch up on though, so if you've tried to contact us but we haven't responded to you yet, rest assured we will get to you eventually!
Due to unforeseen circumstances
the Thyroid UK Office is Temporarily Closed.
We currently have no internet, phone or router, so cannot connect to our network to do any work. We think a mouse may have nibbled through the cables!
Apologies to all of you who have placed orders for books, information packs, membership applications, sent in requests for practitioner lists, general enquiries or other communications.
We will do our best to catch up as quickly as possible just as soon as the technical problems have been resolved.
Thank you in advance for your understanding and patience!
Have you heard of the Innovation Bill (otherwise known as the Saatchi Bill)?
Introduced by Lord Maurice Saatchi, the Medical Innovation Bill will help doctors innovate new treatments and cures for cancer and other diseases.
The Medical Innovation Bill will support doctors who want to innovate and find new ways of treating disease and will allow the patient to demand innovative treatment.
This Bill may well help you, especially if your doctor wants to prescribe a particular thyroid treatment but is afraid to or is being told not to by his superiors.
There is a very good website about this Bill where you can show your support. It's well worth reading:
The website states, "Once passed, a patient, armed with the legislation, will be able to say to his or her doctor: 'Are you trying everything? Can you do anything differently?' The doctor will no longer need to say he or she cannot risk trying anything new."
It might also be worth writing to your MP about your support for this Bill.
Louise Warvill is European Admin of the Year!
We are extremely proud to inform you that Louise Warvill, Charity Secretary of Thyroid UK and lead Administrator of our online community, has been given an Award for Excellence from HealthUnlocked. Thyroid UK Support is one of the oldest and largest communities on HealthUnlocked.
Louise has been awarded 'European Admin of the Year' for showing time and time again why she is one of the top admins on their platform - by making sure nearly no one's question remains unanswered.
Louise works tirelessly to ensure that the platform runs smoothly, working many hours from home as well as at work. Thyroid UK is extremely grateful to her for her dedication. This award is thoroughly well deserved!
Read more: blog.healthunlocked.com/
Eltroxin Solution Out of Stock
Thyroid UK has been informed by AMCo (www.amcolimited.com) that they are out of stock of all dosages of Eltroxin oral solution.
They also inform us that there is no date for when this product will be in stock.
They do have their generic brand of oral solution available in all dosages (MercuryPharma).
There is another liquid available from Teva, also in 25 mcg, 50mcg and 100mcg dosages, which your pharmacist should be able to get for you.
You will probably need to ask your GP to put the brand name on your prescription but ask your pharmacist.
For more information on MercuryPharma levothyroxine oral solution go to:
More information on Teva Oral Solution Levothyroxine can be found on the
Thyroid Hormone Replacements page (see UK - Liquid Synthetic Levothyroxine)
or from the Teva website
A Note from Dr Afshan Ahmad PhD
First of all I would like to thank everyone for their kind messages of condolence and support following Dr Skinner's passing away on the 26th November 2013. Helen Cox, Helen Gordon, Carol and I are very grateful for your thoughtfulness and understanding at this difficult time.
I am also very grateful for the donations to the Vaccine Research Trust and we are in the process of organizing Gift Aid forms for those of you who have sent in donations by cheque. I apologise for the delay in writing and thanking you all but we will be doing that in the near future. Thank you for your generosity and let me assure you that the donations will fund valuable research which will help to make life better for patients. Dr Skinner's research work in thyroid disease and vaccine development will continue from the same premises as his Clinic.
Unfortunately we have been unable to find a replacement for Dr Skinner and the Clinic will therefore close on the 28th February 2014. We are sending out letters to patients and their Family Practitioners to inform them of the situation and would request that you are patient with us as the task is enormous and we hope to complete it by the end of February.
We will continue to support Dr Skinner's patients in any way we can and thank you all once again for your kindness, generosity and loyalty. We feel privileged to have been part of a service which put patients at the heart of its existence.
With kind regards and best wishes,
Afshan Ahmad PhD
ThyroidChange becomes a Nonprofit Organization in the State of New Jersey
Born from the desperation of thyroid patient Michelle Bickford in May of 2012, the grass-roots initiative ThyroidChange has branched out to become so much more than the original petition to improve the treatment of and raise awareness for thyroid disease. With a presence on various social media, including Facebook and Twitter, biweekly blogs and its own US and international lists of patient-recommended doctors, the patient advocacy organization is doing its utmost to achieve its mission. And now that it’s become a NJ NPO it can potentially do so much more.
To read the full press release, click here
For information on the ThyroidChange International Petition, click here
ThyroidChange Website: www.ThyroidChange.org
Announcement on World Thyroid Register
Afshan Ahmad has placed an announcement on the World Thyroid Register website which was set up by Dr Gordon Skinner who sadly passed away on 26 November 2013.
The announcement confirms that the World Thyroid Register will continue and asks that you encourage your friends and relatives to sign it.
Thyroid UK would also like to encourage everyone to sign the register.
To read the announcement please go to: www.worldthyroidregister.com
To sign the register, click this link www.worldthyroidregister.com/Method-of-Registration.html
Update on AMCo Liothyronine from MHRA
Lyn Mynott has received an update on the problems with liothyronine from the MHRA.
"Thank you for your correspondence regarding Liothyronine, please accept my apologies for the wait you have had for a response.
In my last email I referred to on-going work which our Defective Medicines Reporting Centre (DMRC) was undertaking to collect and independently test samples. This came on the back of an increase in the number of Yellow Card and Defective Medicine reports received earlier this year for Liothyronine 20mcg Tablets manufactured by Amdipharm Mercury Company Ltd.
This investigation has found that the assay (content of liothyronine) results complied with the product specification, however our investigation is continuing and we are in contact with the manufacturer regarding these reports. Once this work is concluded, we will consider whether any action is necessary.
I would ask that if any users of your forum have any issues with their Liothyronine tablets that they do report them to us. If a patient suffers a side effect then we would ask that this is reported to us via the Yellow Card Scheme at this link mhra.gov.uk/yellowcard
However, if a patient feels that their medicine has not worked for them then this is something our DMRC would look into; these details can be supplied to us by completion of the form at the following link:
Please be assured that the MHRA closely monitors the safety of all medicines and vaccines in the UK including issues regarding lack of drug effect. Should any problems be identified, appropriate regulatory action will be taken and communicated to healthcare professionals and patients alike.
When we hear anything further, we will keep you updated.
Eltroxin Solution Shortage
Thyroid UK has been informed by AMCo (www.amcolimited.com) that there is a stock shortage of their 50mcg and 100mcg Eltroxin solution.
They hope that these dosages will be in stock after Christmas but they may not be.
Because of this stock shortage, it means that people are having to take several syringes of the 25mcg.
There is another liquid available from Teva, also in 25 mcg, 50mcg and 100mcg dosages, which your pharmacist should be able to get for you.
You will probably need to ask your GP to put the brand name on your prescription but ask your pharmacist.
More information on Teva Oral Solution Levothyroxine can be found on the
Thyroid Hormone Replacements page (see UK - Liquid Synthetic Levothyroxine)
or from the Teva website
New Thyroid Organisation in Norway
Thyroid UK now has links with a new thyroid organisation in Norway.
Anne Marie Rosenvold, President told us
"Thyroidea Norge (Thyroid Norway) is a newly formed organization for thyroid sufferers in Norway. Our aim is to educate the thyroid patient so she may have the tools necessary to have an informed dialog with her GP. We believe knowledge is power, and hope to have a position in which we educate the population in general.
We also want to work towards an international co-operation as the problems we suffer with bad diagnostic tools, inferior research and inadequate treatment is world-wide. We want to work with lobbying towards politicians to improve our rights in the Norwegian social security system and to promote more and better research in this area.
We also hope to have a dialogue with endocrinologists and GPs so that we may work together towards improving the situation for thyroid sufferers.
Our slogan: We believe in improvement is possible!"
If you know anyone from Norway who needs help with their thyroid conditions send them their website: www.thyroidea.no
Dr Gordon Skinner - Tributes
I have received a message from Afshan that Gordon is having a family funeral on Thursday 5th December, which is for family and friends only. There will be a memorial service for everyone in the new year in Glasgow and in Birmingham. All will be welcome then.
In the meantime if anyone would like to send flowers, the family have asked if, instead, people could send donations to the Vaccine Research Trust at the website below or a cheque made out to Vaccine Research Trust and send it to 22, Alcester Road, Moseley, Birmingham, B13 8BE..
The donation site is www.justgiving.com/vaccine-research-trust
Afshan says, "Thank you for your on-going support and kindness."
Dr Gordon Skinner – Sadly Missed
1942 - 2013
Thyroid UK is extremely sad to inform you of the death of Dr Gordon Skinner. Dr Skinner died of a stroke on Tuesday 26th November 2013.
Dr Skinner worked tirelessly for thyroid patients to improve their health. He also campaigned strongly to change the way patients are diagnosed and treated in the UK.
He formed the World Thyroid Register to “address the parlous situation of patients who are hypothyroid and have yet not been diagnosed and indeed patients who are being managed with an unacceptably low level of thyroid replacement.”
He will be sadly missed by his family, friends and thousands of thyroid patients whom he has helped to regain their lives through his diagnosis and treatment of hypothyroidism. Many patients became firm friends with Dr Skinner enjoying his quirky sense of humour and it is so sad that we will never be able to hear his lovely Scottish lilt again.
Afshan Ahmad has asked us to inform his patients that the clinic will remain open for three months and then it will be wound slowly down. Patients can still attend any appointments already made and Afshan will be able to give advice. Unfortunately, she will not be able to prescribe medications.
She will be writing to all of Dr Skinner’s patients to inform them of the situation and she will work hard to help patients obtain their necessary medications by writing to their GP’s and asking them to take over treatment.
As soon as Thyroid UK hears about the funeral arrangements we will let you know.
Thyroid UK would like to offer condolences to Dr Skinner’s family, friends and patients.
New Guide - Making Sense of Drug Safety
Sense about Science, a charitable trust that equips people to make sense of scientific and medical claims in public discussion, have published a new guide entitled
Making Sense of Drug Safety Science: Investigating the science of side effects.
The guide was produced in collaboration with the Medical Research Council (MRC) Centre for Drug Safety Science with support from the MRC.
Sense about Science want patients and their carers, as well as medical professionals to know about this guide, which is free.
A quick summary of the guide:
experiencing side effects is unpleasant, and not understanding them is frustrating. While it's impossible to have a drug with no side effects, the guide demystifies why they happen and what can be done about them. It also shares insights into how the yellow card system works, and opens up clinical trials.
This guide is very interesting and Thyroid UK recommends that you download it and share it with your friends and family.
For more information about the guide go to:
To download the guide go to:
For more information about Sense about Science go to:
MercuryPharma (AmCo) Carbimazole 20mg Shortage
AmCo have confirmed a shortage of 20mg Carbimazole due to a manufacturing issue.
They cannot confirm when it will be available, but state that there should be no problems with the supply of 5mg.
Articles by Lyn Mynott on Pharmaphorum
We are pleased to tell you that Lyn Mynott has had two articles published on www.pharmaphorum.com – one on hypothyroidism and one on hyperthyroidism.
Pharmaphorum's mission is to connect healthcare thought leaders to support the pharma industry in delivering innovation. Since their launch in late 2009, pharmaphorum has become a globally recognised brand for thought leadership, occupying a unique space in connecting innovative ideas from across healthcare and beyond with our pharma audience.
Pharmaphorum provide a platform for publishing thought leadership articles and other and media and Thyroid UK was very pleased to be invited to write articles.
You can find very interesting articles on this website as well as information on various ongoing and completed clinical trials.
You can make comments so it might be a good idea to do so about thyroid disease diagnosis and treatment.
To read the hypothyroidism article go to:
To read the hyperthyroidism article go to:
Scottish Petitioners ask for stories from Scottish thyroid patients.
SCOTTISH THYROID SUFFERERS: MALE AND FEMALE.
After the round-table meeting today the 1st October, it was decided that we would gather stories from Scottish Thyroid/Adrenal Patients who are unhappy with their diagnosis, treatment and medication. We would like to hear from 100 + dissatisfied patients.
How long have you been ill?
Have you been diagnosed?
What was your first diagnosis?
Have you been given any other diagnosis?
How long did your doctor take to recognise your symptoms?
Did she/he test your Free thyroid hormones?
Or was it just the TSH/T4 test?
What were the results?
What were you prescribed?
Were your adrenals checked?
Were your vitamins/minerals etc checked?
Were you referred to an endocrinologist?
Do you still have symptoms?
How happy were you with your overall treatment?
Etc etc etc...
Because it is the Scottish Parliament, it has to be Scottish Patients. Thank you for participating. You are helping to bring change.
Please send your story (concise version please) to: Elaine.Smith.email@example.com
October 2nd 2013: MSP.ELAINE SMITH HAS SENT THE FOLLOWING MESSAGE TO US THIS MORNING:-
I would be grateful if you could ask on the site if I can have an address & phone number with the stories. It will make the testimonies more real for the committee with that information. I will reply to those I already have to ask for this info. Is everyone clear that I am going to pass these to the committee?
Scottish Parliament Petition - Round Table Discussion - 1st October 2013
The Recording of this Public Petitions Committee meeting is now available to watch on the Scottish Parliament website. Click the link below to go directly there:
alternatively, here is the link to the recording on YouTube:
Lyn Mynott - Chair/CEO of Thyroid UK - is currently in Edinburgh preparing for tomorrow's Round Table Discussion.
Attending the meeting will be:
- Michael Matheson, Minister for Public Health
- Professor Graham Leese, CMO Specialty Adviser for Endocrinology
- Mark O'Donnell, Head of Quality and Planning Division
- Lesley Metcalf, Policy Manager, Clinical Priorities Team, Scottish Government
- Sandra Whyte, Marian Dyer, and Lorraine Cleaver, Petitioners
- Tara Wilmott, Head of Approvals, Education and Standards Directorate, General Medical Council
- Dr Anthony Toft, Consultant Physician, Spire Murrayfield Hospital, Edinburgh
- Lyn Mynott, Chair/Chief Executive, Thyroid UK
- Professor Graham Williams, President, British Thyroid Association and Treasurer, Society for Endocrinology
I'm sure everyone will join us in wishing Lyn, Sandra, Marian & Lorraine all the best for the meeting.
More information about the meeting can be found here:
Thyroid UK Invited to Round-Table Discussion at Scottish Parliament
Lyn Mynott has now received Thyroid UK's invitation to the round-table discussion at Scottish Parliament, where the Scottish Parliament Public Petition PE1463 on effective thyroid and adrenal testing, diagnosis and treatment will be discussed.
We don't know who the other participants are yet but have asked to be kept informed.
Although this is a formal meeting, witnesses giving evidence and the Committee Members will sit alternately around the table to encourage more of a discussion, as opposed to the more familiar question and answer format with a panel sat opposite the Committee.
The meeting is to be held in public on 1st October 2013, and a substantially verbatim transcript of the discussion will be published and made publically available.
Following the discussion, the Committee will be invited to agree what action it will take.
Lyn Mynott says, "I will ensure that the Committee is given the evidence it needs in respect of the problems patients face in the diagnosis and treatment of thyroid disease including the fact that other conditions are often missed such as adrenal insufficiency as well as B12 and Vitamin D deficiency."
For more information about the Scottish Thyroid Petition go to:
MHRA issues precautionary recall of medicines manufactured by Wockhardt Ltd
The MHRA have recalled 16 different prescription only medications made by Wockhardt Ltd. Including two medications commonly used by people with hyperthyroidism, Atenolol and Propylthiouracil (PTU).
The MHRA believe that there is no patient safety risk but there is a risk of cross-contamination because of poor cleaning practices, defects in building fabric and the ventilation systems at the site.
The MHRA are saying that it is safe to continue with the medications you already have. This issue may well, however, cause a supply problem of Carbimazole, another drug used for hyperthyroidism and if anyone is on PTU because they cannot tolerate Carbimazole, they may need to discuss with their doctor the possibility of prescribing another brand from outside of the UK.
Please note that the 25mcg levothyroxine from Wockhrdt is NOT listed in this recall alert.
For a full list of the Wockhardt medicines in this recall, go to:
For the MHRA press release, go to: www.mhra.gov.uk/NewsCentre/Pressreleases/CON296424
We will keep you updated of progress of this issue.
MercuryPharma Liothyronine Batch Problems – Update
We have just received an email from the MHRA with an update on the current situation in respect of possible problems with particular batches of liothyronine:
Just to update you our Defective Medicines Reporting Centre (DMRC) are in the process of collecting samples from patients who have reported these batches to us via the YellowCard scheme. We have some samples already and are awaiting a few more. Once we have all the samples, our lab will carry out an investigation.
I will keep you updated on this.
As soon as we hear any further news, we will keep you updated.
Amdipharm Mercury T3 (liothyronine) now in Stock
After problems of a shortage of the active pharmaceutical ingredient (API) which is used to make the tablets, the MHRA have now informed us that Amdipharm T3 is now in stock:
Just to let you know that we have been informed by Amdipharm Mercury that stocks of Liothyronine 20 mcg Tablets are now available.
We will be updating our website very shortly and will be contacting individuals who have contacted us about this over the last few weeks.
Pharmacists should now not have a problem getting hold of Amdipharm Mercury T3 but if they do, ask them to contact the MHRA Customer Services team either by email (firstname.lastname@example.org) or by telephone (T: 020 3080 6000).
To read the MHRA Report on this issue go to: www.mhra.gov.uk/NewsCentre/Whatsnew/CON279168
Scottish Parliament Petitioners Filmed for STV
Scottish TV filmed Lorraine Cleaver, Sandra Whyte (two of the Scottish Parliament Petitioners) and Lyn Mynott about the current diagnosis and treatment of thyroid disease.
The interview, which was broadcast by Scottish TV News on 27th May 2013 is available to watch online here:
Information about the ongoing Scottish Parliament Petition is in our Campaigns section here:
Availability of T3 from Amdipharm-Mercury (formerly MercuryPharma)
There is a shortage of MercuryPharma liothyronine at the moment. Lyn Mynott has been in touch with Amdipharm-Mercury to find out what the problem is.
They told her that there is a shortage of the active pharmaceutical ingredient (API) which is used to make the tablets. This has caused the shortage of the liothyronine tablets. She was told they hope to have stocks by the end of June.
When asked what they could do to help thyroid patients who need this medication right now, they couldn't answer the question other than to say go to their GP.
Lyn Mynott then telephoned the MHRA to see if they were aware of this problem and they asked her to write to them, which she did:
I am writing in respect of the stock problems in relation to the MercuryPharma product, liothyronine.
I have spoken to them today and they inform me that there are problems with the API for this product and that although they don't have a date for stock to be available, they are hoping that it will be available by the end of June.
Patients are starting to be very concerned because MercuryPharma are the only manufacturer in the UK of this product and their prescriptions are due. If patients cannot access their medication they can become very ill very quickly because this hormone has a half life of approx 8 hours.
Generics are available outside of the UK but this would mean that pharmacies would have to possibly find new suppliers and the cost to the NHS may increase.
Kind regards, Lyn Mynott
This was their response:
Dear Ms Mynott,
Thank you for your email and for bringing this to our attention.
We are currently working with colleagues at the Department of Health and with Mercury Pharma regarding this matter. Our intention is to come back to you shortly once we have an update on the position moving forward with regards to Liothyronine supplies.
If you have any further questions in the interim please do come back to us.
A member of our HealthUnlocked forum has now heard from Amdipharm-Mercury and they have stated,
"....the product is available in other European countries and we are trying to source some unlicensed supply which can be sold in UK in the interim.
The process to source this unlicensed supply is on-going and it will take us at least a week or two to complete it."
Lyn Mynott states, "Let's hope that T3 becomes available for everyone soon. I was surprised to receive my prescription of T3 this week without any problem at all so perhaps the problem is already being solved."
We will keep you updated.
Pulse Magazine Article on Vitamin B12 Deficiency
Thyroid UK always suggests getting your B12 tested because the symptoms of B12 deficiency are very similar to those of hypothyroidism.
Now Dr Andrew McCaddon, a principal GP in Wrexham and honorary senior research fellow in the School of Medicine, Cardiff University, who has a research interest in vitamin B12 deficiency and dementia has written an article for Pulse Magazine, a magazine aimed at health professionals.
The article explains about the fact that the blood tests done on the NHS only capture total B12 rather than just active B12 and also that current assays can often give false normal results.
If you think you may have vitamin B12 deficiency or have already been diagnosed, this article may well help encourage a discussion with your doctor on how he can help you.
To read the Pulse article, you will need to be registered on their site but it's free, doesn't take long and this online magazine often has some excellent articles.
Here's the link for the article:
Report on the Suspension of the Teva Marketing Authorisation
for Levothyroxine 100 mcg Tablets
You may be aware that the marketing authorisation for the 100mcg tablet manufactured by Teva was suspended on 16th February 2012.
A recall of the remaining Teva levothyroxine tablets was performed on 09 May 2012 as soon as the MHRA were confident that there was a sufficient supply of alternative products available to patients.
The MHRA have now published a report on the suspension of this product. The report gives a chronological list of events leading up to the suspension along with detailed information on the reasons for the suspension.
Very interesting report which also shows why patients should be using the Yellow Card Scheme more often.
For more information on the Yellow Card Scheme go to: yellowcard.mhra.gov.uk/
To read the MHRA report on Teva go to: www.mhra.gov.uk/NewsCentre/CON263957
Eltroxin Tablet Shortage
A few patients have told us that they have received a letter from their GP to say that Eltroxin is being discontinued.
We contacted MercuryPharma about this today, and they confirmed that the Eltroxin brand of levothyroxine tablets are NOT being discontinued.
However, there is currently a supply issue with the Eltroxin branded tablets, and MercuryPharma could give no estimation of how long it will be before this is resolved.
MercuryPharma also again confirmed that the Eltroxin levothyroxine tablets are the same as those available under the generic MercuryPharma label, which are still obtainable.
So if your pharmacy are unable to obtain your usual supply of Eltroxin branded tablets, you can ask them to substitute with the MercuryPharma generic tablets instead.
More information about various thyroid hormone medications (including lists of ingredients) can be found on the Thyroid Hormone Replacements page
Scottish Parliament Petition - Tuesday 5th February 2013
We are delighted to be bringing you the news that a petition entitled "Effective Thyroid and Adrenal Testing, Diagnosis and Treatment", was discussed in the Scottish Parliament yesterday.
The petition was submitted by Sandra Whyte, Marian Dyer and Lorraine Cleaver, who are resident in Scotland. These ladies all have a heart-rending story to tell which led them to filing the petition on behalf of all thyroid patients.
Unfortunately, Marian was not too well on the day of the meeting but Sandra and Lorraine attended and gave a very real picture of what is happening in a clear and concise way, showing no signs of how nervous they were feeling.
The MSP's were very interested in what they had to say and agreed to write to various people about the problem, including Thyroid UK. We will, of course, give them all relevant information to aid them in this matter.
On behalf of all thyroid patients who are not doing well on levothyroxine only therapy, we would like to thank Sandra, Lorraine and Marian for submitting this petition and for all the work they have done on this for thyroid patients.
Thyroid UK will help them in any way they think is necessary to move this forward.
To see the paperwork regarding this petition go to:
The meeting was filmed and is available to watch on youtube here:
MHRA Report on Levothyroxine Tablet Products
The MHRA has published a report on levothyroxine tablet products: A review of the clinical and quality considerations. This was brought about because of concerns of patients and doctors about suspected quality and effectiveness issues of levothyroxine.
The MHRA have published the review alongside some FAQ's which explain the reasons behind the review and the organisations involved in it.
The FAQ's have been reproduced below.
You can download the full review here:
Questions and answers
1. Why is the MHRA publishing this report?
Over recent years, the MHRA has received reports from prescribers and patients of problems with levothyroxine tablets, mostly concerning the quality or effectiveness of the product. The numbers of reports were very small in relation to the number of patients taking this medicine, nevertheless they were persistently received. In January 2011 the MHRA decided to undertake a detailed investigation into possible underlying reasons for these reports that might be connected to the known sensitivity of the drug substance, levothyroxine. The findings were presented to the Commission of Human Medicines for their consideration.
2. Who are the Commission on Human Medicines (CHM) and in what situations does it make recommendations to the MHRA?
The Commission on Human Medicines is an independent panel of experts with whom the licensing authority (MHRA) consults to obtain advice on the safety, quality and efficacy of medicines. The CHM may make recommendations to the licensing authority on particular medicines under consideration. Further information about the CHM is published on the MHRA's website:
Commission on Human Medicines
3. What recommendations did the CHM make for levothyroxine products?
The CHM made several recommendations aimed at improving the quality and consistency of levothyroxine products. A key recommendation was the introduction of a new discriminatory dissolution test that all products will have to meet when tested.
4. Why is the levothyroxine dissolution test important?
Dissolution is a way of testing that the levothyroxine drug is able to adequately dissolve out of the tablet and be available in solution for absorption from the gut. If the drug doesn't completely dissolve, then it may not be fully absorbed by the body to give an optimal clinical effect. A dissolution test was developed by the MHRA. Although we cannot be certain that this test is predictive of what will happen in the body, all levothyroxine tablets on the UK market were shown by this test to have satisfactory dissolution apart from one make (Teva levothyroxine 100 microgram tablets). Teva levothyroxine 100 microgram tablets have since been withdrawn from the UK market.
5. Where can I get more information about the Teva levothyroxine 100 microgram tablet?
The MHRA consulted with the CHM over the Teva levothyroxine 100 microgram tablet on 9 February 2012 and this led to the suspension of the marketing authorisation of this product on 19 February 2012. The MHRA expects to publish a report on this CHM review by end February 2012.
6. When will the new dissolution test be applied to levothyroxine products?
The dissolution test will shortly be included in the BP monograph for Levothyroxine Tablets. This will become a legal requirement once published by the BP. The timescale for this is expected to be about January 2014. More information about the revised monograph for levothyroxine tablets is available on the BP website:
Revised Monographs (external link)
7. In the recommendations it states: '…brand or named supplier prescribing is not considered necessary at this stage, but should be kept under review.' Will the CHM be keeping this under review and issuing further guidance? And if so when is this likely to be?
All the recommendations made by the CHM to improve the quality of levothyroxine tablets have been taken forward by the MHRA and the BP Commission. Earlier this year, the MHRA met with each manufacturer of levothyroxine tablets to give them notice of these recommendations to ensure they are implemented. CHM did not recommend named or brand prescribing because the recommendations were considered to be adequate measures to ensure the quality and consistency of levothyroxine tablets that remain on the UK market. The MHRA are closely monitoring all reports of adverse events following suspension of the Teva Levothyroxine 100 microgram Tablet. Since removal of this product from the market, there are no clear signals suggesting that the levothyroxine products that remain on the UK market are inequivalent.
The MHRA will continue to review reports and consult with the CHM when necessary.
8. What should patients on levothyroxine do now?
If you are taking levothyroxine you do not need to take any action. Most patients on levothyroxine will have regular blood test to inform their GP that their hypothyroidism is controlled and whether any adjustment is needed to their treatment.
However, if you have any concerns over your treatment you should discuss these with your GP, practice nurse or pharmacist.
9. Where can I get more advice on this subject?
If you have any other questions regarding this review you should discuss them with your GP, practice nurse or pharmacist.
Please also continue to visit the MHRA website.