Thyroid UK T3 Campaign Plan

[lynmynott]

I just thought I would write a post about what Thyroid UK plans are over the coming months in regard to T3 problem.

Thyroid UK has already been working to bring the problem of the extortionate costs and the non prescribing of T3 into the media and many of you may have already listened to the two radio interviews that I did.

On Thursday of this week on The One Show (7pm BBC1) there should be a piece about this topic. I travelled to Northampton for filming last week. Let's hope nothing happens to stop this being aired.

Thyroid UK is planning a targeted letter writing campaign and meetings with relevant people and bodies (first meeting with a pharma company is tomorrow) to try to ensure that people will not be taken off T3 and also to impress the authorities that some patients need to be prescribed T3.

I would ask that you try to be patient with us during this time. I work full time but my two staff, Louise and Charlotte, only work part time. There is only so much we can do in the time we have and the funding we have and at the moment much of our time (many hours) is spent dealing with queries from patients who need our help either by telephone, email, Facebook or Twitter.

Please bear with us while we try to get this work done. If you have already written to your MP or the BTA and received a response, we will be asking you to send a copy to us.

We will also be asking for case studies from people who felt really well on T3 but who have had this taken away from them. Please don't send us anything yet. We will be contacting everyone as soon as we are ready to start the campaign.

We hope to start working on the campaign next week (unless something else crops up that will take us away from doing this such as me having to travel miles for an interview that I think will help) including designing some template letters for people and instructions on what to do.

Best wishes,

Lyn Mynott

CEO, Thyroid UK

[Rapunzel]

Will you arrange for this post to be pinned, please?

[lynmynott Partner Thyroid UK in reply to Rapunzel]

Oops! Sorry, I forgot!

[amasufindme in reply to lynmynott]

As a Thyroid UK member, I am really happy to volunteer my skill set as an ex PA to remotely assist Louise in document production/collation, research, database management, proof reading etc.

[Kitten1978 in reply to amasufindme]

Thank you. amasufindme please also check this post: healthunlocked.com/thyroidu...

[amasufindme in reply to Kitten1978]

Many thanks Kitten1978 and I am aware of this post, some really brilliant ideas that hopefully can be implemented. I think its good to consolidate all efforts at the hub of Thyroid UK and so I am happy to support Thyroid UK in any way I can

[Rapunzel in reply to amasufindme]

...and I'll happily spend time talking with ppl on my phone esp over the summer when I'm quieter. Promise no profanity or offers to share my stash

[Coachv]

Thanks for all your hard work on this vital issue.

[shaws]

Thanks Lyn for information and one person cannot do all of the promotional and interviews etc etc. Many of the people who use the forum for help/advice could join as members of TUK so that it helps defray expenses you have at HO, TUK. plus improving our strength in trying to overturn the negligent ways of diagnosing/treating and being able to 'choose' what suits.

[Hillwoman]

Thank you for keeping us up to date.

Louise made a comment on the forum a day or two back, saying that TUK doesn't like asking for money, which is understandable. However, you clearly need more staff, so perhaps now would be a good time to make an appeal to TUK forum members? Not all of us are members of TUK itself; I'm sorry to say I keep forgetting to join, so I'll toddle off now and get on with it...

[Kitten1978]

Thank you Lyn. A coordinated and directed effort, which you are proposing, is more likely to succeed. You clearly cannot do it all. It's also important to give thyroid patients a VOICE and opportunity to fight for our rights, when we can. We don't want you to do everything for us as it's quite dis-empowering. Our power and often our humanity have already been taken from us by incompetent doctors.

[Kitten1978]

lynmynott

I have taken liberty to copy your post and post in on T3 Action Group on facebook. I hope it's o.k. but let me know if you want me to remove it. Warmest regards. Kitten1978

[Kitti1 in reply to Kitten1978]

Hillwoman

I've been thinking exactly the same. Please excuse newbie ignorance. Ive seen mention of collection boxes, are there a good number available if I get on a posting drive encouraging members to get them in local shops and what is the protocol for that ?

How about collection days outside supermarkets ect. Is there posters ect. to back up a collection point ? Help with that would be most appreciated. As I'm in Manchester I was thinking of using the near me function and contact members directly to come together to help with such things. Would that be ok ? In the process of that I will also see if there is an appetite for a monthly / quarterly meeting to help facilitate fundraising and assisting with the campaign in anyway we can.

[Hillwoman in reply to Kitti1]

I'm not really in a position to answer your questions - perhaps direct them to Louise or Lyn? All good ideas though.

[RedApple in reply to Kitti1]

Kitti1

There is fundraising information on the main Thyroid UK website. For example, here's the page about collection boxes: thyroiduk.org.uk/tuk/donate...

[alangardner in reply to Kitti1]

hi there kitti1, I have ,for about 2yrs , had 2 collection boxes - 1 in a local shop & 1 in my home -- an idea that I came up with was that I get a fair amount of various visitors [ we temd to be a watering hole for many ] for supplying drinks etc to them I ask for a donation -per day- and suggested 50p , as well as putting my own change in ..... this has resulted in over £500 being raised so far .

all I asked from louise was for a formal letter for the shop stating that I was authorised to collect,empty and pay the funds directly into the bank account of tuk , I then empty ,bag up and pay into the bank [ Barclays ] using the paying in slips provided by tuk ..... once separated it takes about 4-5 mins to pay into the banks ''business cashier ...... absolutely simple and works ...... may not be a fortune over the length of time but as mr Tesco always says every little helps .....alan x

p.s. I currently have over £50 to hand -- I pay in when it gets to about £100 ish now , it saves a bit of post sending me numerous bank slips , this works better as the money is in tuk's account within 5 mins of paying in anywhere ....alan

[Pooh10]

Good luck with the pharma company tomorrow. On a related point, is the Health Services Medical Supplies (Costs) Bill currently going through Parliament likely to be a casualty of the General Election? In other words, will have to be adopted and started from scratch by the new government? Lets hope not.

[amasufindme in reply to Pooh10]

Hi Pooh10, there is a news article here that is saying that the bill is set to go through before parliament ends on the 3rd May...

healthunlocked.com/thyroidu...

[Pooh10 in reply to amasufindme]

Thanks amasufindme, that's good news! But let's cross fingers anyway...

[SAMBS in reply to Pooh10]

Pooh 10 -given the prominence of NHS funding and the Party Political Election Campaigns - this is a great opportunity to # many of the televised programmes and collar all the various Party Candidates on this issue of more and better research & funding for this insidious condition, plus in general, the lack of knowledge and refusal to order the relative and necessary specific blood testing.

Also the way most GP's and us, the public, so happily will take other medications (OTC or prescribed) Many of which are not compatible with Thyroid med, I.e Levothyroxine for starters!

......On at least 2 occasions, I discovered from the leaflet information supplied and a UK trained physiotherapist a few years ago , that I had been prescribed ones I shouldn't have, because of my Thyroid condition. Metformine being the most harmful of because I developed a swollen spleen and my immune system really started going downhill after that, bringing on some of the same symptoms others have described here, ending up with a blood disorder!

[Pooh10 in reply to SAMBS]

SAMBS I'm sorry not to have replied sooner but I've been away. I agree. Lack of knowledge of these issues is unfortunately all too common in the medical profession and it is a constant mission to raise awareness. I fear, however, that the subject may get drowned out in all the general election 'noise'. We will all have to persevere and push forward once the new Government and Ministers are in place.

[MajorTom]

Great !! Thank you for all you do and so good to hear there is stuff in the pipeline. Will watch out for the One Show

[Manz123]

Fantastic news. I would love to support in some way. Please keep us posted on what we can do.

[Treepie]

Lyn,Appreciate your point about limited time and staff but I was wondering if you had sought advice from other similar charities on building alliances,getting political and medical influence. I think it takes years to build such relationships. I know you have contact with the PA Society but I am not a member. One that may be worth contacting that has had many years of development is the National Ankylosing Spondylitis Society (NASS).

[lynmynott Partner Thyroid UK in reply to Treepie]

Hi Treepie

I am in touch with the PA Society and others but unfortunately, our issue is different to theirs in that at least the professional bodies listen to their members.

However, we now have a trustee with campaigning skills which we have never had before.

[Treepie in reply to lynmynott]

Hi Lyn,

I appreciate the listening point. Just thought NASS may have useful contacts or advice as they have been at it a long time.When I first developed AS 50 years ago only men like myself were diagnosed after about 8 years on average. Years later it was found women could also be affected.

[Rapunzel in reply to lynmynott]

That's really good to hear. Just bear in mind that from the responses to this thread, many of us want to help but are hamstrung on how to do that without some advice and direction

PS I can't do a sponsored 5k run but I'm deffo up for a sponsored sleep - how about it?

[Hillwoman in reply to Rapunzel]

And I'd be really good at sponsored insomnia.

[lynmynott Partner Thyroid UK in reply to Rapunzel]

[Bluecat101]

Brilliant, thanks so much for your work

[Bluecat101]

Hi - Just a thought - would you like also to mention the Pituitary Foundation which l have just discovered applies to me!

[endomad]

had another email today from my MP shadow health minister Jon Ashworth, he has been brow beating my local CCG but they wont budge, pm me email to send copy.

[TaraJR]

This is brilliant Lyn, thank you SO much. I'm sure we'll all do as much as we can, also following your advice. A concerted effort is best, so we're not all doing disparate things!

[Nanaedake]

Watched the One Show this evening, really good, great to see the problems of medication discussed.

[Redjane]

Thank you so much for all your efforts regarding T3 and the dreadful treatment of patients with underactive thyroid. By finding out about T3 on this site has given me my life back with no exaggeration. If I can help in any small way please let me know.

[lynmynott Partner Thyroid UK in reply to Redjane]

We will be informing people about our campaign next week so keep an eye out for info!

[Marz in reply to lynmynott]

Have I missed something ?

[ThyroidWest]

Thank you

[LaurieRose]

Ohhh so glad this is happening. The more people and the right people that are aware the better. I've read so many posts of people suffering when the T3 could be the answer. Many GP surgeries in Uk just don't test T3 levels. Even in an emergency, it seems it's not commonplace for hospital staff to include a T3 level check in the blood test. Surely it should be included in a full blood count. I don't understand why it costs more than a T4 blood test.

[Hidden]

lynmynott Kitten1978 has come across this about the use of T3 in the treatment of hypothyroidism and there are some very revealing comments from those in the medical profession.

healthunlocked.com/thyroidu....

[Ann-Simpson]

Thank you and please keep me posted. I have had T3 withdrawn and am feeling very unwell. Would like to hear what I can do to persuade my specialist to let me return to taking it Ann Simpson

[levelslass]

I'm an ex press officer retired due to car accident. Let me know if you need any help. Have just had letter from GP telling me they won't give me 5mcg x 4 T3 anymore but can buy privately. Have been tracking this story for some time and will be writing to David Warburton MP. Need to stop companies Sigma Pharmaceuticals and Cinven ripping off the NHS

Keep up the good work

[amasufindme in reply to levelslass]

This notification CMA form may be useful to fill out, I did it for Concordia Int. The more of us that share our experiences, the more impetus CMA has in pursuing an investigation into Big Pharma greed.

gov.uk/guidance/tell-the-cm...

[Ann-Simpson]

I will send you an email as to how the lack of T3 is affecting me.Ann Simpson

[levelslass]

Let me know if you need any help. GP trying to take me off T3 and has offered it privately. So waging my own campaign (used to be publicist/press officer before car accident) Working up to a slot on Woman's Hour but have to get ducks in a row first.

[LouiseRoberts in reply to levelslass]

Hi - please email [e-mail]

Thanks

Louise

xx

[JOLLYDOLLY]

Thank you Lyn. I saw the One Show! Thank you for all what you are doing for us

[Thyroid-101]

Will you be going to the NICE scoping workshop on Tuesday September 19th ?

Do you have a copy of the letter from Dr Henry Lindner ?

healthunlocked.com/thyroidu...

[LouiseRoberts in reply to Thyroid-101]

Yes and yes. x

[Thyroid-101 in reply to Thyroid-101]

I heard at the NICE Scoping Workshop that there are now 3 suppliers licensed to sell T3 in the UK, and that the prices were likely to reduce in the coming months

Everybody there wanted the new NICE Guidance to allow doctors to apply more clinical judgement and allow them to prescribe T3

Don't hold your breath, as the new guidance is not due until January 2019 !

[helvella in reply to Thyroid-101]

The term oligopoly replaces monopoly.

Licensed to sell does NOT mean they will be marketing.

Many here would be surprised to know that there is another levothyroxine product that was licensed in 2012. I don't remember anyone, ever saying they had received it.

PL 32446/0001 Levothyroxine Tablets BP 25 mcg Recipharm Limited

PL 32446/0002 Levothyroxine Tablets BP 50 mcg Recipharm Limited

PL 32446/0003 Levothyroxine Tablets BP 100 mcg Recipharm Limited

Perhaps, sometimes, just holding a licence is a bargaining chip worth the cost to the company?

[lynmynott Partner Thyroid UK in reply to helvella]

I agree helevalla. I remember dealing with Recipharm years ago but they never actually manufactured levo as far as I am aware.

[Thyroid-101 in reply to helvella]

Can I invite you to research the potential suppliers of T3 ?

At the NICE scoping workshop I met a person from Syncordia who told me that they had a product, and that Teva was just about to gain a licence

If there are 3 suppliers than someone might be able to negotiate better prices.

I don't know who that "someone" might be !

[Kitten1978 in reply to Thyroid-101]

Teva has already been granted a licence but their T3 isn't in the pharmacies yet. I suspect Teva T3 will be 20p cheaper than Morningside T3 and 40p cheaper than Concordia T3...

[Thyroid-101 in reply to Kitten1978]

Do you know what are the actual prices ?

Are we talking about £5 a month or £5,000 a month ?

With 3 suppliers, is there likely to be a price war over the next 12-36 months ?

The actual pricing may play a part in the NICE and NHS decisions

[helvella in reply to Thyroid-101]

There is no sign that a price war is likely in the near future when Mercury Pharma have had so much difficulty in delivering to the distributors, and Morningside and Teva are so new they will likely only produce modest volumes.

Sure, in time, there could be a price reduction, but quite possibly long after NICE and NHS decisions have been made.

[Kitten1978 in reply to Thyroid-101]

I'm afraid Helvella is probably right.

Besides, big pharma companies are morel likely to come to agreement with each other, than compete... 28 tablets of Morningside Healthcare T3 cost only 20p less than 28 tablets of Concordia T3.

Morningside Healthcare 100 tablets 20mcg each = £921.43

Concordia Ltd. 100 tablets 20mcg each = £922.14

[pffft2017]

Hello, just spotted this post before I became a member. How's the campaign going and what can I do to help. I'm intolerant to thyroxine and if they withdraw my T3 my quality of life would be greatly affected.

Many thanks

[lynmynott Partner Thyroid UK in reply to pffft2017]

Hi, You can catch up here: thyroiduk.org/tuk/campaigns...

[pffft2017 in reply to lynmynott]

Many thanks. Sounds promising. Your hard work is very much appreciated. I shall use the template to lobby my MP. Best of British!