Please help!

Hello everyone! This is my first post on here. I was hoping to gain some support with my ongoing petition. Please can you take a look. Feel free to ask any questions or if you're happy to sign it then please do. Thank you all

petition.parliament.uk/peti...

[SeasideSusie Remembering]

Hidden This has been discussed in an earlier post healthunlocked.com/thyroidu...

The details in your petition are inaccurate.

You say in your petition

" Many sufferers report greater benefits from taking Natural dessicated thyroxine but ** due to cost it is not easily available on the NHS** "

This is totally wrong.

The cost issue is with T3 and is being dealt with in various ways by Thyroid UK and others.

The issue with NDT isn't cost, it's because it isn't a licensed medication here in the UK that makes it difficult to obtain it on the NHS. It might be available on a 'named patient basis' if a patient can find a doctor willing to do this but very few are.

If you want your petition to be considered then get the facts right, and get someone to proof read it and correct the couple of spelling errors which could be the result of predictive text???

[Hidden in reply to SeasideSusie]

Goodness! I never expected such a hostile response! I have accurate information from sources I do not wish to disclose with yourself! Yes, ndt is not licensed in the UK but have you asked yourself why? If this is not something that interests you that is fine. I guess you're one of the lucky ones who feels great on Levo!

[SeasideSusie Remembering in reply to Hidden]

Not a hostile response at all, it was meant to be helpful in trying to get your petition taken seriously. If you read the other post I linked to you will see that it was discussed earlier and member Sweetart replied:

"I have sent Rachel Parker a message she uses thyroid group UK on face book,to see if she can iron out some of the details it's still circulating. Hopefully will get a reply."

Member Mary Mary replied:

"I'd like to sign but agree that it could be written better. Does anyone know how to find Rachel Parker to ask her to modify it?"

And member ValTay replied:

"Have signed, but also agree it is unfortunately not well written - brain fog, perhaps? But many thanks to Rachel for starting it."

So it would seem that it does need a bit of a rethink.

NDT isn't licensed in the UK - Fact. So what is your actual 'accurate information' from undisclosed sources?

The reason GPs don't want to prescribe it is because they have to take responsibility for prescribing an unlicensed medication and very few are willing to take on that responsibility.

Having been hypo and treated for 43 years, and having been on NDT myself at some point, then yes it is something that interests me. I know all about Armour from many years ago, when synthetic thyroxine was introduced, and the reason that the NHS gives for not supporting NDT as a thyroid medication.

And no, for your information, I am not "one of the lucky ones who feels great on Levo" nor am I one of the lucky ones who has a supportive GP.

[scool in reply to SeasideSusie]

I agree, the wording is not great and if you want to be taken seriously, and for your petition to work, you have to put in a credible, well-written argument.

[Singoutloud in reply to Hidden]

The responses aren't actually hostile but do contain constructive criticism. If it is to be discussed in parliament you need to dot all the i's and cross all the t's or it just won't be taken seriously.

T3 liothyrinine is being removed due to cost. NDT was the treatment used many, many years ago prior to synthetic levothyroxine but it isn't licenced as such. A very small number GPs may consider prescribing on a named patient basis but there are probably a greater number that have never heard of it.

Thank you for raising the petition, I have signed it as raising awareness always helps. However, I also believe that two/many heads are better than one when it comes to writing petitions and making sure that all the points and priorities are covered.

[dang in reply to Hidden]

It's not hostile, I read your petition myself and was confused exactly what the goal was. We're on your side about wanting change. Why don't you try to make a new petition and with the help of all the members here we can fine tune it before it gets uploaded?

Sorry this is your experience with your first post here 😓 nobody means any harm by it.

[poppppy in reply to SeasideSusie]

Hi this is the link to the petition site you mean I think. Once on it search "thyroid" it has 4 signatures of the target at present.

Sorry if interfering. Anyway I have signed it

Poppy

[mistydog in reply to poppppy]

No link!

[poppppy]

Hi well done for starting a petition. I would love to sign it to. Please don't be disheartened but it says ndt is not on NHS becoz of cost. I believe this is not the case. Can u amend it as the people who have signed I know will resign. And you have a thousand. That is brilliant.

I wrote a petition once and got two signatures lol.

Poppy

[poppppy]

Hi this one needs signing too you.38degrees.org.uk/petiti...

[Treepie]

RachelP seems to be rather sensitive .Shame she got it wrong .Would be better if folk did not sign as incorrect assertions will not help the case of those who need something extra to or instead of synthetic Levo.

[Hidden]

I apologise if I have offended anyone on this site. I created the petition whilst sat with my youngest child who was extremely sick at the time. It was 1am and I was using my phone to write! Predictive text also interfered! I do suffer with brain fog but I am by all means not a sandwich short of a picnic. Having gained 6 A Levels, a Bachelors and a PHD I though I could put together something that would help. And that's all i wanted to do! Try to help others. Unfortunately once approved I am unable to change the writing on the petition so it has to stay how it is I'm afraid.

FYI I have already been prescribed Armour from my GP, so there was really no need for me to start this petition. I just wanted to help others and it seems like all these sites are full of people complaining about symptoms and problems (and rightly so), but no one ever making a stand for us sufferers. I'm sorry if my petition does not sit well with you because of my wording but at the end of the day it is there to help us get a CHOICE in our medication, whether this be Levo, t3 or ndt and not be ruled by others factors! Thank you for taking the time to read this.

[greygoose in reply to Hidden]

It's not a question of offending people, it's just that if you want to be taken seriously, you need to get your facts right. That's all.

[Hidden in reply to Hidden]

You will be pleased to know that the cost of NDT really is an argument put forward on occasions. It certainly was on the document that I have been complaining about for over 2 years, to which I have as yet to receive any sort of sensible reply:

panmerseyapc.nhs.uk/recomme...

Some of do make considerable efforts to get the justice that we deserve. It is unfortunate that nobody in the medical "industry" wants to listen to us, far less do anything to help us all.

I am hoping to get my case discussed in Parliament when I finally get a reply. Primary Hypothyroidism has already been discussed there and can be read in Hansard:

Tuesday Volume 572, 17 December 2013, No. 95

I believe there to be some further action taking place re the petition that was put to the Scottish Parliament a while ago on the same subject.

My personal opinion is that petitions have little effect and more direct action needs to take place. If everybody took a little time to attack those who persecute us, then eventually something will give way, the sooner that happens the better.

[dang in reply to Hidden]

Nobody has taken offence, well other than you I think. And we don't mean to offend you please don't take it this way.

I stop myself from making important posts at one in the morning for the same reason. I think if any of us members did that we'd most likely end up needed to re-write it the next morning.

The thing is this is a community, you don't need to do this stuff alone, why don't you lean on us and we can all help you write this thing together? We're much stronger as a group

[marigold22]

Rachel, thank you for taking the time to sort out a petition. However I do agree with the others who have pointed out to you that NDT is not the issue for thousands of hypothyroid patients who cannot tolerate or improve on levothyroxine (T4). I for one was so ill on levo for 14 years before being changed onto Liothyronine (T3) by a private doctor. Now I am scared out of my wits that Liothyronine is going to be removed by the NHS due to the totally inflated cost. I will be left without life support medication all because of the utter greed of the only manufacturer/supplier in the UK. They have no competition in the UK so have increased the price by at least 1,000% over the last few years. All folk on here who take T3 (Liothyronine) are fighting, banging on doors, writing begging letters to MPs, whoever they can think of, in an attempt to reverse the NHS / government decision to withdraw T3 from prescription in England. We are up a creek without a paddle. So - the wording on your petition made us all draw in breath as NDT is not the massive issue on this forum right now.

[Hidden in reply to marigold22]

That's fair enough but I thought the way in which it was handled was poor. Armour actually contains t4 and t3 so I believed this would benefit a lot of sufferers. I also tried to get a t3 petition started but this one was rejected! This was the next best thing and it's just a shame this site has responded so poorly when there are others out there who have really rallied around it and are trying to help! We have received over 1000 signatures in 36 hours so hopefully it will continue to gain support and make a dent in the ignorance of others.

[marigold22 in reply to Hidden]

Why was the petittion about T3 rejected? I thought a petition could say anything within reason. A lot of hypo's are unable to take any T4 at all, me included.

[Hidden in reply to marigold22]

They said it was rejected because it was similar to another petition already out there. I couldn't find the appropriate link! But I haven't seen it shared on any other sites! I realise that ndt doesn't suit everyone, just like Levo doesn't, but I had to do something! And this to me was about a choice for sufferers

[poppppy in reply to Hidden]

The other petition maybe the one on 38 degrees website. It has enough signatures now for it to be heard in parliament. I have put links to it above.

Hope that helps

[janveron1]

I cannot find a link to sign and it will not accept my form! Help!

[MissBfirstDanBlackBelt]

Right now and in my opinion, petitions about NDT risk deflecting and distracting from the very frightening issue concerning the NHS decision to withdraw Liothyronine from its prescribably medications list.