This website is dedicated to the millions of thyroid patients who are being ignored and left to suffer unnecessarily, and to healthcare practitioners, who want to better serve those patients.

AUTUMN 2015 newsletter

AUTUMN 2015 -TPA NEWSLETTER

Hello to our Oldies and Welcome to our Newbies. If you are a newbie, please dont be afraid to ask questions on our main Thyroid Forum. You can ask as many as you need answers for. TPA is here to help and support you.

To keep you up-to-date with some important events (both happy and sad) that have been happening over the past year, or events that will be taking place, read about them here:.

THE MANY BENEFITS OF JOINING TPAS MAIN THYROID FORUM

If you are seeking help and support for yourself or for a member of your family or friends, you need to look no further than Thyroid Patient Advocacy. Whats more, all the information you will find in our website/resources is given freely as we appreciate the majority of you have been forced to leave paid employment because of your continuing wretched health and are probably trying to survive on State Benefits.

Our main Thyroid Support Forum not only allows you to tap into the pulse of all things happening in the niche of thyroid and thyroid related disorders, but will increase your knowledge and knowledge is power. (If only ALL the members of the medical profession had such knowledge as we have in our Resources, there would be no need for such organisations as TPA). The more people talking in our forum, the more they will be able to keep abreast of the most recent research in this field and medical practitioners can gain information direct from their patients who are voicing their real concerns.

Below are a just few of the messages written by members giving feedback on how many benefits they have personally found by joining our Forum.

If you have had a similar experience, please write to us and let us know

THYROID PATIENT ADVOCACY AND THE LONDON MARATHON

Some time ago, Kate (TPA Secretary) entered Thyroid Patient Advocacy into the Charity Ballot for the 2016 London Marathon. Places are like gold dust, and we are delighted to let you all know that one such place has been allocated to TPA. We have already somebody lined up to run on our behalf, but he needs sponsorship. With all our members, we dont see this being too much of an issue and hopefully, with help from those who can afford it , we should be able to raise somewhere in the region of 2500/3000 which would be wonderful.

Details of how you can sponsor will be sent to you shortly in a separate email.

Some facts:

In 2015 these were the stats for the Virgin London marathon…
It is the World’s biggest one day fundraiser!

38446 runners registered
38015 runners started
37675 runners finished. This was a record number of finishers’
54.1m was raised by the runners and their fundraising teams – this was a record year. 600,000 people were watching in the crowd in London and it was watched globally on the TV in 196 countries by 4m viewers!

Next year it will be on Sunday 24th April 2016 – Start time is 10am

In April 2016 – 247,000 have applied – 38,000 (approx) will run

MESSAGE FROM KATEktkTPA@hotmail.com

For the first time the TPA have been awarded a place in the Virgin London Marathon charity ballot this is an amazing opportunity to raise funds.

I will shortly be circulating a link to our fundraising page with the target funding we hope to raise.

We can all play a part by organising fundraising events for our runner with our friends, with our families and at our places of work etc.

Think bake sales, coffee mornings, fancy dress up days, with Christmas round the corner what about making & selling Christmas cards or decorations. We will publish events that people organise on the website to give us all ideas & inspiration to maximise our fundraising. Below is an introduction to our very dedicated runner who has agreed to participate on our behalf

An introduction to James Hopkins, our courageous Marathon Runner, this will be Jamess second Marathon:

james

MESSAGE FROM JAMES:

Hi, Im James and my first marathon was the London Marathon in 2009 so 6 years ago. I ran it in 3 hours and 52 minutes and 26 seconds which I was very happy having set a target of 4 hours.

The day itself was warm for April and the heat took its toll on a lot of people. The most difficult part of the course is the Isle of dogs as there is not much to look at and the crowds seem sparser there. It is a great event and the support from the crowds is amazing and helps you run through the pain. Luckily I only suffered with blisters!

I am already in training and am up to 6 mile runs at the moment but the real hard training starts in January when I will follow a detailed training plan from a running magazine and will be running 6 days a week. My aim is again to go under 4 hours and hopefully beat my previous time even though in 2016 I will be 40!!!

Unfortunately because the marathon is in April most of the training is when it’s cold dark wet and windy so you have to have a lot of motivation and commitment. The biggest motivation comes from knowing that the money I raise goes to a very good cause and helps people less fortunate than me.

OTHER FUNDRAISING IDEAS:

Kate has also been looking at further possible fundraising ideas – the obvious one is a group physical challenge.

Kate has done a couple of these previously (Ben Nevis for ovarian cancer & Kilimanjaro for Kids Company). This could be quite a challenge for those still suffering with a thyroid or thyroid related condition, but many of us here have managed to get better so are you up for it?

Kate says that she enjoys walking in her free time and in her travels, she has come across a walking company who as well as organising social walking events also work with a couple of charities to organise charity walking events. At the moment it looks like they are working extensively with Breakthrough Breast Cancer and the Air Ambulance Service with challenges up and down the country. How does everyone feel about this? I thought if people had different levels of stamina / physical fitness / time constraints etc something that could be done in a series of stages so that people could do as much of as little as they wanted, e.g. Hadrian’s wall / The Pennines Way / Offa’s Dyke / Coast to Coast etc? If any of our members are interested, she will be happy to contact them and make some preliminary enquiries as probably Autumn 2016 would be a good time to schedule this?

If YOU have any fundraising ideas, or you feel you can help us in any way, please do let us know.

EASYFUNDING PROGRAMME – – Please help TPA and save yourself a lot of money

Some of you may have noticed that we have access to Easyfunding on the Home Page of our website www.tpauk.com so please do take advantage of this. Once you have subscribed to the Easyfunding Programme you will be able to save yourself a lot of money by purchasing what you need online with huge savings, at the same time, helping Thyroid Patient Advocacy raise funds at the same time (and we desperately need such funding as we have to rely on volunteers to donate as and when they are able.

However, once you have signed up with them, everything is done automatically for you whenever you make purchases online without a problem. You will be sent a weekly Email showing the different places where TPA members can take advantage of the special offers and make money for us.

It is all made very, very easy. Good luck

NEWLY PUBLISHED AND VERY IMPORTANT PAPER THYROID PATIENT ADVOCACY SURVEY FINDS THOUSANDS OF PATIENT COUNTEREXAMPLES TO L-THYROXINE (L-T4) MONO-THERAPY.

PLEASE NOTE: The Editor of the Journal of Orthomolecular Medicine (JOM) had not been given details showing that the Register / Study / Survey of Counterexamples to L-T4 monotherapy, which the following paper was based on, had been prepared, produced and paid for by Thyroid Patient Advocacy who had worked on this over the past four years. The JOM Editor is aware of this and will rectify the online version shortly. You can read this paper here –

Every medical practitioner, Community Commissioning Group (CCG) and thyroid association/organisation must read this paper so they get a thorough understanding of why a number of their patients continue to complain of symptoms when their thyroid function test results are returned as “normal” or they are being prescribed levothyroxine-only, but it doesnt work for them.

They must be reminded, and VERY LOUDLY, that the RCP, BTA et al. guidance on the Diagnosis and Management of PRIMARY hypothyroidism (defined as a deficiency in secretion of hormone BY THE THYROID GLAND or a deficiency of thyroid hormone in the BODY is for PRIMARY hypothyroidism – and PRIMARY hypothyroidism ONLY.

The RCP, BTA, mainstream endocrinology and local Community Commissioning Groups (CCGs) are causing GREAT HARM to thousands of UK citizens by using the RCP,BTA et al guidance for ALL causes of continuing symptoms of hypothyroidism.

As many as 15% of UK citizens are NOT suffering with PRIMARY hypothyroidism, but may be suffering with a NON-THYROIDAL CONDITION, which CANNOT and MUST NOT be treated with the pro-hormone L-thyroxine only.

I would like to thank everybody who has been involved in the compilation of the above TPA Register /survey / study of Counterexamples over the last four years, without which, this great paper could never have been written.

As well as the above published paper, you could help your doctor (and local Commissioning Group) to further his/her/their education by showing him/her the following paper asking them to take a little time to read it and to let you know their views, once they have done this. Endocrinologys Failures Causing Harm to Approximately 300,000 UK Citizens Left Suffering Symptoms of Hypothyroidism

STATUS OF SCOTTISH PARLIAMENT HYPOTHYROID PETITION

I wrote to the Scottish Parliament Petitions Committee asking them to update me regarding the status of the Hypothyroid Petition. If you have not read the various Statements submitted to the Scottish Parliament Petitions Committee, you can read these here

The following is a copy of the Petitions Committed message in response.

Dear Ms Turner,

Thank you for your e-mail.

At its meeting on 9 December 2014, the Public Petitions Committee agreed to write to the Scottish Intercollegiate Guidelines Network (SIGN), forwarding the evidence it has received on this petition and inviting it to work with the petitioner to investigate the possibility of developing SIGN Guidelines for the diagnosis and treatments of thyroid conditions.

This is now under consideration by the SIGN Guideline Development Programme Advisory Group. We expect the Advisory Group to report back to the Committee once it has come to a decision on whether SIGN is in a position to develop guidelines on this subject matter and the likely timeframe for doing so. We are advised the initial assessment by the Advisory Group can take some time and we hope to hear back from SIGN after the summer recess.

In the meantime, we are expecting an update from the Scottish Government in relation to the supply of T3 and issues around the prescription of desiccated thyroid treatment.

As soon as any responses have been received from SIGN and the Scottish Government, these will be posted to the petitions webpage.

I hope this information satisfies your query. Should you have any further questions, please let me know.

Yours sincerely,
Sigrid.

Ms Sigrid Robinson
Assistant Clerk
Public Petitions Committee
Room: T3.40 | The Scottish Parliament | Edinburgh EH99 1SP |Tel: 0131 348 5178 |
sigrid.robinson@scottish.parliament.uk |

The Scottish Government have responded since the above message was received and I understand that SIGN are now moving forward too. SIGN have asked for Forms to be completed by the petitioner and once these have been received, their response will also be posted to the Scottish Parliaments petitions webpage

THE TRAGIC DEATH OF OUR LONG STANDING MEMBER JACQUILINE FALKOWSKI

We are very sad to report on the tragic death of our long-standing member Jacqueline Falkowski, who was driven to take her own life last January 2015.

Everybody should read Jacques tragic story (this is long and very sad) and you may wish to give a copy to whoever you feel this might help, such as your GP or endocrinologist who fails to see outside of the RCP/BTA et al. mainstream guidance on the diagnosis and management of those with symptoms of hypothyroidism, and who have normal thyroid function test results. I do believe there is a huge number of medical practitioners are not even aware that the active thyroid hormone T3 is required by every single cell in the body and brain to make them function.

The South London Coroner only wrote to me 27 August 2015 enclosing a copy of Jacques report to the Scottish Parliament Petitions Committee 8 months after she had taken her own life, even though Jacque had written in her own handwriting To Sheila (FYI), Love, Jacque. I telephoned the Scottish Parliament Petitions Committee to check whether the Coroners Officer was telling me the truth when I asked if they had received a copy of this tragic report after Jacque had died. This is more than appalling!

However, the Petitions Committee told me that they had also only been sent her report on 27 August 2015 the same day it was sent to me.

This is more than appalling!

TPA STAFF REQUIREMENTS

We are looking for a new Treasurer, as Kasia, our present Treasure has found that with her new job, she is now away several days during the week, often having to stay away over-night and her duties have grown so much she is unable to act as TPA Treasurer any more. I would like to take this opportunity of thanking Kasia for all the work she has done for TPA during these past few months. She will be dearly missed.

We also have a vacancy for a new Trustee if you feel this is something you would like to do.

If you also have a particular specialism you feel might be useful to help our cause, please also let us know. If you feel you can help us in any way and you can spare a couple of hours or so each month, please contact me at tpadvocacy@gmail.com

LEARN HOW TO USE OUR RESOURCES GIVING YOU ACCESS TO JUST UNDER 700 ARTICLES ON THYROID AND THYROID RELATED PROBLEMS:
  • Click on RESOURCES at the top of the main thyroid forum home page http://www.tpauk.com/forum or TREASURE CHEST on our website Home Page.
  • On the page that opens on the Forum, click on TREASURE CHEST at the top left of that page
  • On that page, see the list showing the different Categories, each Category (in black text) showing several articles pertaining to that particular Category. You will see short Abstracts of the different articles in the centre of the screen.

You will find, when opening some of the Categories that there are Sub-Categories (these are indented and in green text) e.g. if you click on the Category About Thyroid Hormones you will find over 60 articles about thyroid hormones. Click on the Sub-Category that shows underneath About Natural Desiccated Porcine Thyroid Extract and you will see over 30 articles all to do with NDT, giving details about what NDT is, what it does, where you can purchase it without the need of a prescription (not from the UK I might add), how to treat using NDT etc. You will find almost everything that you need to know, without having to ask other forum members.

Look, for instance at the Category All Thyroid Conditions and note how many there are. Click on any one of the different thyroid conditions, and read all about them you are bound to find a condition there that may relate to you personally.

Open the Category called Associated Conditions and check out the numerous articles in the Sub-Category – starting with Adrenals and going right down to Stomach Disorders/Coeliac Disease and everything in-between.

Scroll down to the Category Nutrition and Supplements click on it, and check out how many articles there are and read what you need to know. Again, you will find all of these extremely helpful.

On the main Thyroid Forum Message Home Page, we have lifted several links that are perhaps the most popular, and listed them in a link all of their own called USEFUL LINKS FOR MEMBERS and these should help you a lot. Play around with our Resources/Treasure Chest and see how you get on. Below are some popular links that should help you.

Symptoms of Hypothyroidism and Signs of Hypothyroidism

Recommendations for all suffering symptoms of hypothyroidism

Online Pharmacies

Discounts on Tests and Supplements

Draft letter you may wish to send to your Doctor

How to Treat Using Thyroxine-only (L-T4)

How to treat Using T3

How to Treat Using Natural Thyroid Extract

Taking L-T4 at Night Works Better

Natural Treatment for Symptoms of Hypothyroidism

Importance of Iodine Supplementation When Taking Thyroid Hormone Therapy

Why Thyroid Hormone Can Stop Working

Facts about Natural Thyroid Extract

Letter from MHRA about doctors prescribing NDT (unlicensed medicine)

How do I tell my GP I am self-treating using NDT?

April 2015 – latest information regarding getting Access to your NHS Medical Records

Sheila
www.tpauk.com

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