Health App Survey
PatientView in collaboration with Health 2.0, are undertaking a short survey to find out what patients and carers really want from health apps.
This is an opportunity for patients and carers to tell app developers how health apps can be improved to better meet the needs of patients and carers.
The survey is open to anyone who has a long term condition and to carers of people living with long term conditions and is completely anonymous and confidential. The survey is short, with only 10 main questions, and should probably take no more than 10-15 minutes of your time As a survey participant, you can have a copy of the results emailed to you if you wish.
It is hoped that this survey will be used to engage entrepeneurs who fund the development of 'health apps' (computer programs that can be downloaded onto smartphones or tablets etc).
To take the survey go to www.surveymonkey.com/s/HEALTH-2 (closes on 24th October 2014)
Vaccine Research Trust July Newsletter
Fiona Skinner would love to thank the patients that came to the Celebration of the Life and Works of Dr Gordon Skinner on the 3rd May, and invite them to their Village Fete on the 21st September.
To read more please download the July edition of the Vaccine Research Trust newsletter
#UNMUTE Campaign - NHS Complaints
Recently Which? commissioned a survey into how complaints were handled by the NHS – the results were shocking; 40% of people who experienced problems within the NHS didn't complain and of those who did, more than half felt they were ignored, while 43% were dissatisfied by the outcome.
The recent public inquiry into the scandal at Stafford Hospital, saw complaints handling become a top priority for change and Which? are committed to not letting the government forget, so they are looking for 50,000 signatures on the #UNMUTE campaign which is asking the government to:
- Give people a role in triggering inspections by regulators through their complaints.
- Give people a unified public services ombudsman which can swiftly deal with their unresolved complaints.
- Give people a voice by allowing representative groups to make super-complaints in our public services, as they do in private markets.
The campaign is being supported by spoken-word artist George the Poet and music producer Jakwob, who have come up with a unique track in support and once the campaign reaches 50,000 signatures the full track will become #UNMUTED.
If you have ever felt unheard, please sign this petition: www.unmuteuk.com
Change.org Petition - NHS Complaint Handling
Tim Trent has set up a Change.org petition in respect of NHS Complaint Handling. Thyroid UK has seen that complaints have not been handled efficiently or correctly in some cases. The system needs to be changed and perhaps they will listen if enough signatures are collected.
To sign the petition please go to: https://you.38degrees.org.uk/petitions/make-nhs-complaints-count?bucket&source=facebook-share-button&time=1404723788
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!
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,
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/