STOP THE WITHDRAWAL OF T3!!!: On Levothyroxine? T... - Thyroid UK

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STOP THE WITHDRAWAL OF T3!!!

Pamela0106 profile image
Pamela0106
โ€ข74 Replies

On Levothyroxine? T4 only treatment? Still feel rotten? Told it's all in your head? SIGN IT! ๐Ÿ‘‡๐Ÿผ

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

It needs 100k signatures before it will get any level of consideration! This community can get it there!

THYROID PATIENTS BE HEARD!!!

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Pamela0106 profile image
Pamela0106
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74 Replies
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Pamela0106 profile image
Pamela0106

How might we go about getting this as a pinned post? ๐Ÿ™๐Ÿผ

Katepots profile image
Katepots

Yes come on people why have you all not signed??!!

If it's not affecting you now it probably will in the future!

Plus help those who can't function without T3

Low T3 causes heart disease enough reason to sign!

Pamela0106 profile image
Pamela0106โ€ข in reply toKatepots

Thank you xx โค๏ธโค๏ธโค๏ธ

alimacb profile image
alimacb

Signed

Pamela0106 profile image
Pamela0106โ€ข in reply toalimacb

Thank you so much x โค๏ธ

shond2015 profile image
shond2015

Pamela - Thank you for helping to keep the momentum going. I have signed of course, so hope this message jolts others into signing too.

Pamela0106 profile image
Pamela0106โ€ข in reply toshond2015

Hoping it does too xx thank you Hun x

Singoutloud profile image
Singoutloud

This is something we all need to get on board with. I signed and shared this at the beginning and there are currently just over 6000 signatures. This forum has tens of thousands of members and I would urge you all to take just a few minutes to read and sign this very well put together petition. A hell of a lot of work has gone into the campaign to raise awareness of this issue and it would be a real shame if the hard work didn't come to anything especially when many people here are going to be affected by the removal of T3.

Pamela0106 profile image
Pamela0106โ€ข in reply toSingoutloud

Thank you xx couldn't agree more x

Pamela0106 profile image
Pamela0106

I did and couldn't see it in there. Maybe I just missed it. ๐Ÿ™ˆ๐Ÿ˜‚ x

shaws profile image
shawsAdministratorโ€ข in reply toPamela0106

It was my mistake Pamela. I've signed several petitions recently.

Pamela0106 profile image
Pamela0106

I still can't see it haha I'm being thick! I see the NHS consultation documents in the pinned posts but not the petition link xx

shaws profile image
shawsAdministratorโ€ข in reply toPamela0106

This is one I'm referring to. Cannot believe it is 7 months old.

healthunlocked.com/thyroidu...

Singoutloud profile image
Singoutloud

Popped over to the pernicious anaemia forum and posted the link there too. Every little helps x

Pamela0106 profile image
Pamela0106โ€ข in reply toSingoutloud

Thank you so much xx

marigold22 profile image
marigold22

Thank you. Signed and put on my FB. Do you think it would help if this post was posted EVERY DAY ? Some members perhaps don't log in daily or even have breaks of a week or more - on holiday, feeling better etc. It's so vital to get as many signatures as possible.

Pamela0106 profile image
Pamela0106โ€ข in reply tomarigold22

I'm sure it absolutely would help. Every signature counts xx

marigold22 profile image
marigold22โ€ข in reply toPamela0106

Need to find someone who can keep posting it on daily basis. You?

Pamela0106 profile image
Pamela0106โ€ข in reply tomarigold22

Hahah I will post it as often as I can. I share it already as often as I can on Facebook and Twitter etc x

mischa profile image
mischa

Have just signed and huge thanks for continuing this campaign.

Pamela0106 profile image
Pamela0106โ€ข in reply tomischa

Thank you so much xx

EllaRuby profile image
EllaRuby

Signed, thank you X

Pamela0106 profile image
Pamela0106โ€ข in reply toEllaRuby

Thanks Ella xx

Summer64 profile image
Summer64

I have signed one about this so not sure if it's the same one. I'll try and I expect if it's the same one it will tell me I've already signed. I sent one to my MP but never heard a thing back. I'm on T3 and it's getting harder for the pharmacists to get it due it's rising cost.

Summer64 profile image
Summer64

it let me sign so it must be a different one.

Pamela0106 profile image
Pamela0106โ€ข in reply toSummer64

Thank you Hun x

Raventhorpe profile image
Raventhorpe

I've signed a while ago and have shared it on my Facebook page and Twitter numinous times, we need to get this out there as much as possible so if your on face book or Twitter could you share it as well as sign as the more people who see it the more signatures we will get. Itt campaign is not just about t3 although this petition is for that as losing t3 on prescription is eminent if we don't do something about it now we will lose it. Itt want to improve treatment for thyroid across the board so come on people let's get behind these hard working people.

Pamela0106 profile image
Pamela0106โ€ข in reply toRaventhorpe

Love this reply xx yes, let's get it out there xx

Kitten1978 profile image
Kitten1978

Signed ;)

Pamela0106 profile image
Pamela0106โ€ข in reply toKitten1978

Thank you so much x

Quokka profile image
Quokka

I've signed and emailed the link to lots of people. Thanks!

Pamela0106 profile image
Pamela0106โ€ข in reply toQuokka

Appreciate that more than you know xx thank you x

AiryFairie profile image
AiryFairie

Done!

Pamela0106 profile image
Pamela0106โ€ข in reply toAiryFairie

Thank you xx

greygoose profile image
greygoose

Has anybody tried posting this on the Fibro Action forum? :)

Pamela0106 profile image
Pamela0106โ€ข in reply togreygoose

Please feel free to do that xx I don't think anyone has x

greygoose profile image
greygooseโ€ข in reply toPamela0106

Ummm... no. I'm not welcome on there. lol

Pamela0106 profile image
Pamela0106โ€ข in reply togreygoose

I just posted it. Worth a shot right? Lol x

greygoose profile image
greygooseโ€ข in reply toPamela0106

Right! Well done! lol x

greygoose profile image
greygooseโ€ข in reply togreygoose

Let's see how long it stays there...

Singoutloud profile image
Singoutloudโ€ข in reply togreygoose

What did you do Goose? ๐Ÿ˜จ Did they not take to your wonderful straight talk. ๐Ÿ˜‰

greygoose profile image
greygooseโ€ข in reply toSingoutloud

They didn't like me talking about vitamins and vitamin deficiency. :(

Singoutloud profile image
Singoutloudโ€ข in reply togreygoose

Aww Goose. In that case they don't deserve your knowledge so it's their loss in more ways than one. At least you know you more than appreciated here. X

greygoose profile image
greygooseโ€ข in reply toSingoutloud

Thank you, Singoutloud. :)

LAHs profile image
LAHsโ€ข in reply togreygoose

Agreed, it's their loss. I'm impressed with your honesty. I had a gang of haters on a local site recently when I tried to do the right thing for an animal who was obviously being neglected. Strange how some people are afraid to act. It really hurt me for a while but it was a fait accompli - the animal is fine now. And then a group of people PM'd me and thanked me for taking action. Why wouldn't they support me publicly?

Keep up the good work GG, I appreciate your knowledge and wisdom.

greygoose profile image
greygooseโ€ข in reply toLAHs

Thank you, LAHs. :)

Neeta-K profile image
Neeta-Kโ€ข in reply togreygoose

I go to told off for talking about leaky gut on the pelvic pain forum so left!

greygoose profile image
greygooseโ€ข in reply toNeeta-K

Good heavens! Where's the harm in that? These people want to loosen up a bit, and understand that so many things can be connected, or have a common cause.

Neeta-K profile image
Neeta-Kโ€ข in reply togreygoose

Totally!I was told I was giving false hope and there's no evidence (Sigh).

KittyCooper profile image
KittyCooper

Signed

Pamela0106 profile image
Pamela0106โ€ข in reply toKittyCooper

Thank you so much xx

rnaxand profile image
rnaxand

Just signed it!

Pamela0106 profile image
Pamela0106โ€ข in reply tornaxand

Thank you. I really appreciate it xx we still need 94k signatures so feel free to share it with everyone you can x

Summer64 profile image
Summer64

How ironic is this. I signed the petition this morning and this afternoon a GP from my health centre rang to say that they are having to stop prescribing T3 and he wants me to go back to T4 only to see what happens before they scrap the licence. Now I'm terrified as it was proven I can't convert without the T3 but he doesn't accept that. The pharmacy told me it was due to cost as only one company make it here in the UK but this doctor says it's nothing to do with cost. He is going to test my TSH after a month but should I ask for other tests and if so what? I'm really scared as I know the first thing to go will be my brain. I was bed ridden before, I don't want to go there again. I live alone and have no one to help.

Pamela0106 profile image
Pamela0106โ€ข in reply toSummer64

Sending you all my love and best wishes. Thank you for signing it though. And it absolutely is because of cost although they'll say it's due to lack of evidence too which is untrue. The NHS themselves have categorised it as a drug that is "clinically effective".

Here is a copy of the consultation document which shows T3 details in section 4.9 and you can use it to have the conversation with your doctor:

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

Make sure you fill in the case study too a you're a perfect case study for this.

I think in your case you need to have another chat and e-mail the Practice Manager too if you need to. I've done the same. I'm also going to my local Councillor and MP too.

But, if all else fails the. You can still buy it (although you shouldn't have to) ... you can get it from various websites and also a private endocrinologist will prescribe it to you xx

Summer64 profile image
Summer64โ€ข in reply toPamela0106

Thanks Pamela. I asked him about NDT and said you didn't need a licence for that but he said if he prescribed that and I caught some disease from it he would be responsible so they won't that. I wish I'd never had the RAI in the first place. I didn't want it having read up on it but was shown the government papers saying how safe it was and then once it's ruined your life it's the government that withdraws the only medication that keeps you well. Great. I will contact my local councillor then as my MP didn't respond. xx

Summer64 profile image
Summer64

Surely this part means they can't do this to me. I was prescribed this from an endo at the hospital. Does primary care mean your GP?

๏‚ท" Advise CCGs that if, in exceptional circumstances, there is a clinical need for Liothyronine to be prescribed in primary care, this should be undertaken in a cooperation arrangement with a multi-disciplinary team and/or other healthcare professional"

Pamela0106 profile image
Pamela0106โ€ข in reply toSummer64

It's a difficult one but if it's Endocrinologist prescribed and monitored then I would say you have a good case to keep it. Worth asking for a referral follow up with the Endo maybe?

NHS define primary care as:

"As many people's first point of contact with the NHS, around 90 per cent of patient interaction is with primary care services. In addition to GP practices, primary care covers dental practices, community pharmacies and high street optometrists."

Hope that helps x

Summer64 profile image
Summer64โ€ข in reply toPamela0106

Thanks again. Pamela. It was an endo that diagnosed me and prescribed the T3 but then passed me back to my GP. I will telephone the hospital tomorrow and see if they can help. xx

Pamela0106 profile image
Pamela0106โ€ข in reply toSummer64

Yeah I think that's your best bet. Please let me know how you get on xxx

Summer64 profile image
Summer64โ€ข in reply toPamela0106

Rang the hospital and got put through to the endo's secretary but just got answerphone. I left a message and have tried again but still the same. Meanwhile I have informed my local councillor. x

Pamela0106 profile image
Pamela0106โ€ข in reply toSummer64

Good on you hun xx keep at it x

LAHs profile image
LAHs

Signed

Pamela0106 profile image
Pamela0106โ€ข in reply toLAHs

Thank you xxx

brighter84 profile image
brighter84

Signed

Pamela0106 profile image
Pamela0106โ€ข in reply tobrighter84

Thank you xx

Neeta-K profile image
Neeta-K

If people abroad sign the petition will those signatures count or not?

Pamela0106 profile image
Pamela0106โ€ข in reply toNeeta-K

Thy can sign but only UK citizen signatures will count on the version that goes to parliament. X

Neeta-K profile image
Neeta-Kโ€ข in reply toPamela0106

Someone put up this petition on Hashimotos 411 Facebook group which is an American group and asked the members to sign so I'm concerned many of the signatures won't count :(

Pamela0106 profile image
Pamela0106โ€ข in reply toNeeta-K

I and many of the campaign team have put it on that page and others. Whilst some signatures will be discounted there are a huge number of UK followers in that group. The more signatures the more shares, the better chance it will hit a UK Audience xx

Neeta-K profile image
Neeta-K

Signed and asked family to sign too

Pamela0106 profile image
Pamela0106โ€ข in reply toNeeta-K

Thank you so much. The more the better! x

yuliyam profile image
yuliyam

signed

Pamela0106 profile image
Pamela0106โ€ข in reply toyuliyam

Thank you xxx

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