Thyroid UK Launches #T3Campaign - Help us Fight this Injustice!

[lynmynott]

Thyroid UK has been working on this campaign for several weeks in order to ensure that it has the biggest impact for patients.

Ever since PrescQIPP published their Bulletin 117 (DROP List) and Bulletin 121 (Switching liothyronine (L-T3) to levothyroxine (L-T4)

in the management of primary hypothyroidism) showing exactly how much liothyronine is costing the NHS, Clinical Commissioning Groups have been stopping patients from being prescribed T3 and doctors and endocrinologists have been withdrawing patients' prescriptions of T3. Thyroid UK believes this to be outrageous and unethical.

There are several aspects to our campaign and we need your help. We need you to contact your MPs and VISIT them rather than write to them, if you can. If not, then please do write to them. If you know people in the same area that want to help, then please visit them as a group.

We are aware that there is a possibility that the decision to withdraw T3 from the prescription list has already been made despite the consultation not being finished and a proper legal decision being made. Please bring this to the attention of your MP too. Thyroid UK is in touch with the media and we hope that a big story would bring this to the attention of the decision makers.

We are currently designing a survey that we are going to use showing the impact of treatment (or non treatment) with T3 has on patients' lives. Please participate when we publish this.

NHS England are holding Face to Face meetings in London and Leeds and also a webinar. Please try to attend one of these to make your views known as well as participate in the consultation.

Let's fight this together!

For more information about our campaign please go to: thyroiduk.org

[shaws]

Thanks to TUK we wouldn't be were we are at present and we couldn't foresee T3 being withdrawn altogether and especially from those who have had it prescribed but now withdrawn. It is quite heartless. Keeping people unwell. First they withdrew NDT now T3 - so there is nothing left but levothyroxine which many, on this forum in particular, do not improve.

Thanks Lyn and your staff for all your saltwort efforts going on behind the scene.

[lynmynott Partner Thyroid UK in reply to shaws]

Thanks Shaws! x

[AngieAsh]

Since I am only recently diagnosed I have never tried T3 but I do worry that it may never now be offered as an alternative should I need it. Thanks for doing this and I hope the survey might have a section for us that may be robbed of the option of taking T3 in the future.

[UrsaP in reply to AngieAsh]

AngieAsh Summer64 Quokka Clarebear Had-enough SSE106 Kasikkk Angel_of_the_North Zephyrbear Treepie Please check out the NHS consultation survey that includes Liothyronine (T3) as one of the items to be withdrawn. This is your opportunity to have your say. Watch out for double negative questions, no doubt designed to deter and confuse.

engage.england.nhs.uk/consu...

Also please check out the ITT Campaign. And please sign the petition - The more of us objecting and campaigning against this, the better.

change.org/p/itt-campaign-g...

facebook.com/groups/ITTCamp...

Keep up the good work AlexFisich -This is a worldwide issue!

[AngieAsh in reply to UrsaP]

I filled that in a few weeks ago. I find the whole business with one supplier hiking prices to the point of the NHS considering recall horrifying.

[UrsaP in reply to AngieAsh]

Yep me too and now that second company supplying at similar hiked price with Teva in pipeline, smacks of orchestration to lessen investigation if not totally invalidate it!!! Corruption at it's best!!

[Summer64]

I'll do anything I can to support this as I've had mine stopped and proved I need it.

[Katepots in reply to Summer64]

ITT have been campaigning for a couple of months now, we have an MPs draft letter that has got great response from MP's.

If you would like a copy pop over to ITT Campaign on Facebook. We all need to be in this TOGETHER as one unit of thyroid suffered we will do this!

Working on a new press release now so hopefully better and further press coverage.

[Christina7 in reply to Katepots]

Many thanks for your help!

[Quokka]

Thanks for doing this! Just wondering if anyone has contacted Women's Hour (BBC Radio 4) about the campaign, as so may women have thyroid problems?

[lynmynott Partner Thyroid UK in reply to Quokka]

Hi Quokka, Thyroid UK is doing a media campaign too. I've already spoken to the Guardian and will be contacting all of my media contacts about this as well as other relevant bodies.

[LadyBountiful in reply to Quokka]

I wrote to Womans Hour about 3 months ago about the general question of thyroxine and weight gain needing to be researched as a women's issue but got no response.

[Clarebear]

Me too. My ndt has been stopped so I'm now importing my own

[Had-enough]

My GP doesn't want to know about T3, so I'm spending a fortune getting it from a private doctor and when I retire I have no idea how I'm going to pay for it. We need access to it when we need it and it is really is scandalous, the lack of treatment we get. I really don't know what I would do without this site. Thank you for all you do.

[Hidden in reply to Had-enough]

Because doctors don't like prescribing Hormones of any kind other than levothyroxine

[Hidden in reply to Hidden]

It's the golden brand! Doesn't help me infact quietly opposite. Makes me very very ill

[Pamela0106]

Lyn - sounds good! The more people on board fighting this the better.

Everyone needs to join forces on this and be heard.

Can the ITT Campaign Petition be included in the plan? I couldn't see a separate one for this plan which is good I guess as 2 would possibly conflict one another xx

[Pamela0106 in reply to Pamela0106]

If we don't hit 100k signatures on the ITT petition, all this work is in vain.

THE TIME TO BE HEARD IS NOW!

Sign it! 👇🏼

goo.gl/oXevJj

[SSE106]

Is there any sample letter we can send to our MP?i will do anything to help, it is so important to me.

[MikeM46 in reply to SSE106]

Yes, the ITT group has one ready... go & see!

[Kitti1 in reply to SSE106]

Hi SSE106 here is a link to the ITT template letter to write to your MP

healthunlocked.com/thyroidu...

Hope that helps

[lynmynott Partner Thyroid UK in reply to SSE106]

Yes, we have done a template letter - follow this link - thyroiduk.org/tuk/T3-Campai...

[SSE106]

Why T3 Is so expensive ? Ridiculously expensive .

[MikeM46 in reply to SSE106]

Only in the UK! A company took over the one selling a particular version to the NHS in a controlled price tariff. They spotted a loophole in the law, turned the drug into a generic version and now, with no price control other than the "commercial marketplace" and as the sole supplier they raised the price by a vast margin and what costs no more than about £100 max across Europe per month, they've been charging the NHS an unbelievable amount close to £1000 a month!

The Competitions & Markets Authority are running an investigation including T3 and a number of other price-hiked drugs m. But, that's currently parked until September earliest. Also, an Act to control prices, removing the legal loophole was passed by Parliament back in April this year but has yet to be implemented. In the meantime, the postcode lottery refusal of T3 medication to established NHS patients is already gathering pace even though the so-called national NHS consultation doesn't end until 21 October.

To put it bluntly ... you are being stuffed big time!!!

[Quokka in reply to MikeM46]

I've asked two MPs why the NHS can't approach other companies to buy it more cheaply. I don't understand why they have to wait for the companies to approach them. I had a reply from Jeremy Hunt which didn't answer the question.

[Kasikkk]

Hi folks. In my back home country our family doctors (like GP here) are not in charge to lead thyroid treatments...they must reffer for specialst>>>>>>>>>> endykronologist. I never heard about it that our family dr was treating hormones disorders. They checking all hormonal (all glands hormonel included thyroid plus adrenal etc etc and another hormones mean all of them) balance or inbalance including T3. I am feeling lost here. I would like go to endycronologist.

[Angel_of_the_North in reply to Kasikkk]

You can only go to an endocrinologist on the NHS if sent by your doctor. Most endocrinologists are diabetes specilaists, not thyroid, and either don't have an interest in thyroid or are governed by the same rules as GPs.

[UrsaP in reply to Angel_of_the_North]

And in most cases it takes decades to prove t4 not working before specialist referral even thought about!

[Treepie]

The campaign needs to include the points made by Mike .

[Zephyrbear]

Not sure what to do here... As far as I can tell this all concerns NHS England, but I'm in Wales and so is my MP and the GP surgery that funds my T3, although my endo is just over the border in England. At my last visit to him, he did ask who was paying for my T3 and when I told him the GPs he was happy to let it continue. Currently I have had no problems (or even hints of them) getting my repeat prescriptions for T3. A bit of advice for those of us not under the auspices of NHS England would be helpful... I am slowly completing the NHS consultation document, but it's a bit long-winded.

[lynmynott Partner Thyroid UK in reply to Zephyrbear]

Hi Zephyrbear,

We are targeting the Secretary of State for Health and the Minister of State for Health and that's why we want everyone, including the devolved countries, to contact their MP. They can also write to their SMP or AM but please contact your MP too.

[UrsaP in reply to Zephyrbear]

At last weeks Face to Face we were told that NI, Wales Scotland watching closely as to what NHS Eng doing - get involved and support now if you can.

[AlexFisich]

We in Russia, too, are fighting for liothyronine (T3) youtu.be/zSz17dy2Ksg(Not working as expected?)

[Kitten1978 in reply to AlexFisich]

Hi AlexFisich ,

I doubt many people on HU will understand the content of this presentation...!

I heard that T3 used to be available in Russia but it has been stopped. Do you know why? In the UK the main (but not the only) issue is an exporbitant price of T3... I would imagine the many Russians suffer from thyroid disorders ......given the Chernobyl disaster in the 80's... ;(

[Spareribs]

For anyone not familiar with T3 - here's Michael Mosley.....

(if only I could find the 'Trust me' episode where Dr Anthony Toft asked why the NHS paid so much for T3 )

bbc.co.uk/programmes/articl...

"by far the more common problem is a condition known as ‘hypothyroidism’ - a low functioning thyroid. This occurs when the gland isn’t producing enough hormones, or when the T4 hormones aren’t being fully converted into the active T3 hormones, so can’t be effective."

"An alternative treatment option is to take T3 – the active hormone. It is possible to be prescribed T3 in the UK, but it is an expensive treatment and requires regular tests to ensure the correct dosage"

[Spareribs in reply to Spareribs]

bbc.co.uk/news/health-38895877

Dr Anthony Toft (The Queen's Physician, ex-President of the BTA & author of the BMA Book "Understanding Thyroid Disorders" available in most UK chemists.

"If the T4 is right down at the lower limit of normal," he says, "and the TSH is at the upper limit of normal, then that is suspicious. It doesn't often arouse suspicion in GPs, but it should."

He is also concerned that when a GP does diagnose an underactive thyroid, then patients are almost always prescribed a synthetic version of T4.

This works most of the time but in some cases the symptoms don't improve. This might be because with some patients the problem is not an underactive thyroid, but the fact that they can't convert enough T4 into the active hormone T3.

One way round this is to take T3 hormone in tablet form, but here price is a problem.

"The cost of T3 has escalated incredibly," says Dr Toft. "It's now about £300 for two months' supply of T3, whereas it costs pennies to make."

[Safarisand in reply to Spareribs]

I saw doctor today and he said he has four patients on T3 and it cost the surgery £66k, but is still willing to stand behind us as it's not our fault. Concordia are putting peoples lives at risk.

[trevg in reply to Safarisand]

I'm falling into the hole built by CCG advice and T3 overpricing scam.

Been on it 2 years and was told it will be ok by consultant- but not being filled locally now.

[Safarisand]

Hi Lynn. I am new to forum but am one of the lucky ones on T 3, l used to be on levo I suffered that for nearly 30 years and it was very bad.

I refused one day to take any more and my doctor had one other patient who was on T3 so he put me on it.l have now contacted Jonnie mercer my MP so am awaiting reply will email when I know more

[lynmynott Partner Thyroid UK in reply to Safarisand]

Hi Safarisand, thanks for letting me know. Look forward to seeing the response from your MP. Lyn

[mmmutsvedu]

My brother-in-law has been suffering from a thyroid disorder,there was something growing inside and a surgical operation was performed.So i would like to ask what kind of disorder was that and is there by any chance that it will appear again after his operation.

[lynmynott Partner Thyroid UK in reply to mmmutsvedu]

Hi mmmutsvedu,

It sounds like he had a lump/nodules inside his thyroid. They probably took one lobe away but I need more information. People who have had a thyroidectomy usually become hypothyroid at some point.

[mumcat2]

I've received a copy of my IFR results today - despite the fact that I've been on T3 for over twenty years and both my GP and endocrinology consultant say that it has a marked benefit I won't be able to have it on prescription. Frankly,I'd rather take a long walk off a short pier than come off it...but I am someone who can go online and legally buy it at less than 10% of the £285 which is the charge for it to the NHS. It's a reliable legit supply. Why isn't the enquiry into the exorbitant cost to the NHS getting some publicity? The money they save could easily fund it...or are there too many vested interests in those who pass judgement?