Petition Update (Re-instate T3 as a prescription drug available of the NHS)

Moyra, Gill and the C. A. T. S. Team wish to thank all of the members of Health Unlocked who have so far supported our petition. We are very pleased and spurred on in our cause by the recent decision of the Cumbria Clinical Commissioning Group who have agreed to patients, who have a clinical need for T3, to be prescribed this on the NHS (via a free prescription).

This is a massive step forward in Thyroid treatment and will allow this group of patients to gain a better quality of life. (This was impossible when these patients were being treated on T4 mono therapy).

We would like to hear if any other Clinical Commissioning Groups nationally have agreed to these measures and if you are a thyroid patient who is affected by this ruling we would like to hear from you.

We think our petition has had an impact on this new decision, but also feel that improvements can be still be made not just in T3 treatments but of Thyroid treatments in general. Our petition will continue so if you have not signed it yet, please can you consider doing so.

Many Thanks, Moyra.

58 Replies

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  • That is wonderful news folks. πŸ˜ŠπŸ‘πŸ‘

    J πŸ€

  • Thank you Jose651

  • Very well done fir all your efforts πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘

  • Thank you Gcart for your support

  • Congratulations and many hypo patients will be delighted. I do hope the doctors put this into action. Let's hope this will also filter into other Clinical Commissioning Groups.

  • Thank you shaws one of our members has got her T3 reinstated so we are waiting to see what happens with our other members that are affected and also patients in other areas meanwhile our petition will continue

  • The guidelines should be altered in that doctors have the ability to prescribe non-uk T3 on a named- patient basis without being afraid of being prosecuted.

    The NHS shouldn't be forced to pay exhorbitant sums for T3 to be provided when the other non-UK T3s have proven track records in safety, as far as I know, and you will see from the Non-UK list below there are two T3.

    thyroiduk.org.uk/tuk/treatm...

  • I agree shaws if doctors could supply non uk T3 on a named patient basis (without being accused of malpractice) that would stop a lot of suffering that patients are now going through. If the NHS could source the T3 from other reputable companies instead of paying excessive prices that would go a long way to solving the problem. Take care

  • I know that the UK T3 is the only one licenced and on reading the following link I think a supplier would have to apply for a Licence. It might be worthwhile but I don't know the costs etc which that would entail.

    nhs.uk/Conditions/Medicines...

    NDTs aren't licenced, as far as I know, but used to be the only one to be prescribed (known as gradfathered I believe) before levo was introduced but, again, the authorities have also tried to stamp out this use. Even though these products have been prescribed for many years rumours have been spread by those who should know better and have made False Statements to frighten us. Patients know what suits them and we are dealing with hormones not an underground method of getting 'high'.

    We should have a Choice for Health.

  • Hello shaws thank you for your reply you are right the non UK T3 companies would need to look into costs but I am sure that the issues could be sorted out. You are correct about the NDT'S I can remember June the lady who started our group telling me all about how the powers that be spread lies about NDT to get everyone to use Thyroxine such a shame as NDT does work for some patients.take care x

  • Sorry forgot to say just love your comment about getting high

  • The other T3's have been in use for a long time so they've proved they are safe so could easily be allowed.

    No concern about patients' well-being if levo doesn't suit and some aren't even prescribed an adequate amount as many doctors believe that anywhere in the 'range' is optimum whereas we know it should be around 1 at least.

    New Research by different Researchers has shown that many benefit with the addition of T3 to T4 .

    NDT - both groups ignored the following and never did respond, despite three yearly reminders (Dr Lowe died). Could it be that the pharma companies were very generous to the Organisations over the years? One wonders .

    thyroidscience.com/Criticis...

  • I am sure that is the answer but sadly we can not prove it. Thyroid patients are treated dreadfull and things need to change x

  • You might like this link:-

    web.archive.org/web/2010103...

  • Thank you shaws, Sorry did not reply straight away.we had a family emergency to deal with I think this is very interesting .I have not seen this before.Take care x

  • That's o.k. Family emergencies take priority. :)

  • If you've not joined Thyroiduk.org.uk as a member it means we have a bigger membership and the bigger the membership the better TUK's influence may be.

    There's only three staff behind the scenes whose aim is to change guidelines and/or to make the medical profession see sense.

    thyroiduk.org.uk/tuk/member...

    Also every few years we have a Conference and the last one was great and well-attended.

  • Thank you shaws I will join TUK. Our petition is doing well over 1,000 signed talk soon Happy Easter x Moyra

  • That's excellent. :)

  • That is fantastic!

    I might have to move house! Cumbria is a beautiful place, after all!!!

  • Thank you Ruthi,We are hoping that this new ruling will filter through to all area's in time

  • Great news, Moyra, and I hope it filters through to other CCGs. :-)

  • Thank you that is what we are hoping for

  • I'm new to the group. May I ask where this petition is please?

  • Hi gingertabby,

    The link for our petition is here - change.org/p/the-secretary-...

    Hope it is of interest to you.

    Moyra

  • Thanks so much Moyra! All signed now :)

  • Thank you for your support gingertabby

  • Thank you for your support gingertabby

  • Great news.

  • Hi lucylocks yes it is good news however we are finding that the new guidelines for our CCG are quite tight so there will be patients who still do not benefit from the guidelines we are continuing with the petition so if you can share the link with your friends that will be great as the more supporters we get the better it will be x Moyra

  • Already shared.

  • Thank you x

  • Great news. Well done!

    Can you please provide a link to both the petition and the ruling.

    I am trying to get my T3 reinstated after it was withdrawn last year. I'm in City and Hackney CCG in London. Any ammunition I can have to help my case is much appreciated!

    thanks

  • Hi ElleBee71,

    Here is the link for the petition change.org/p/the-secretary-...

    Unfortunately there is no actual document pertaining to the ruling that i know of. I have been given verbal confirmation twice via telephone conversation with Cumbria CCG that this ruling has come into effect. I do know that the BTA (British Thyroid Association) and British Thyroid Foundation (BTF) were planning to issue new guidelines. You might find it helpful to look on their websites. One thing that we found helpful was to make your MP aware of the T3 situation. I can also tell you that Lord Prior (Parliamentary Under Secretary of State for Health (Lords) recognises the need for T3 in some patients so it may be helpful to write to him.

    Hope this helps and please feel free to contact me again if you need to.

    Moyra

  • might a second petition be useful

    this one to ask for T3 testing to be widely available on the NHS,instead of only Tsh

  • Hi donnabrain, yes we are thinking about a second petition but at the moment we are concentrating on getting T3 reinstated countywide as it is it is a postcode lottery if your CCG will provide it or not. We feel this is very unfair and needs to be changed as soon as possible x

  • Would like a link to the petition please

  • Hi Leoopard,

    Here is a link to the petition for you. change.org/p/the-secretary-...

    Many thanks

    Moyra

  • May I ask what passes for clinical need? How is one required to demonstrate it?

  • Hi puncturedbicycle, Our CCG are using blood tests as evidence of your clinical need, however we feel this is a bit flawed as some of our members still can't get their T3 while other members are getting it. The situation is still unacceptable and needs to be changed as soon as possible x

  • My requirement for t3 doesn't show up on bloods; I appear to convert normally. Without it I have demonstrable physical symptoms which include fluid retention (every part of my body swells up like a sausage), constipation and hair loss. If my t3 is taken away I wouldn't stand a chance getting it back on the evidence of bloods.

    However I'd be offered antidepressants w no problem as apparently symptoms are considered good enough to demonstrate clinical need.

  • Thyroid dysfunction is very complex and there are many reasons why patients need T3. That is why this ruling is so unfair and needs to be changed as soon as possible x

  • Clinical need? Um , if a test is needed to prove muscle ache, pain, lack of sleep , sore eyes, painful wrists, tiredness, constipation, bloated stomach, blah blah blah

    then we don't stand a chance, because the firstl you need is a doctor who listens and secondly a doctor who has empathy πŸ€”πŸ€”πŸ€”πŸ€”

    Having sourced my own from abroad ( T3 showed very poor conversion ) all the above has been improved a lot !

    So maybe if the T3 is tested in conjunction with T4 the answer is right there !

    What s wrong with a subjective trial for thyroid sufferers anyway?

  • Hi Gcart, Our CCG are using blood tests as evidence of clinical need, they seem to have blurred the guidelines a little. Some of our members are getting T3 and some are not even when there is evidence to prove they need T3. We feel this situation is so wrong and needs changing as soon as possible. We are continuing with our petition in the hope that T3 can be available countywide in the near future . The idea of testing T3/T4 will be a step in the right direction in the care of Thyroid patients x

  • Is this the petition? It's been archived

    petition.parliament.uk/arch...

    all archived thyroid petitions

    petition.parliament.uk/arch...

    Maybe we need to start a new petition on the basis that Cumbria is prescribing T3 therefore the rest of the uk should do likewise?

  • Hi Sandy471,

    No the two petitions that you found were not related to ours. Here is the link for the current petition. change.org/p/the-secretary-...

    I think that there might be scope for people championing there own area of the UK as this does smack something of another postcode lottery of sorts but hopefully through the medium of Health Unlocked, members will feel empowered to fight for their rights as patients. Anyone could repeat the things that we at C.A.T.S. have done and i'll happily support thyroid patients wherever they are in the country.

    Many thanks

    Moyra

  • Thank you Moyra. You have given us all hope ;)

  • Thank you for your kind comments we must all fight this injustice together x

  • I have signed

  • Thank you for your support donnabrain x

  • but how would you prove clinical need,if they won't do the tests?

  • You can't prove you have a clinical need for T3 unless you get your T3 levels tested but most CCG'S won't do this so you have no choice but to pay for a private test

  • completely out of my reach

  • Yes I know it is so unfair the admin team will be able to tell you what the cost are or the other option may be to find a friendly Endo who will test your T3. Admin may be able to help with this.take care x

  • as it will be for anyone on benefits

  • Yes the people who make up these rules do not consider anyone on benefits

  • could you please post the link to the petition? I tried to sign one but it had been archived I assume I was looking in wrong place

  • Hi London81,

    Here is the link for our petition - healthunlocked.com/api/redi...

    Thanks for your support.

    Moyra

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