The official process for the removal of T3 as a prescribable medicine

[Kitti1]

As we are all aware the withdrawal of T3 has begun in earnest, ban it through the backdoor.

Link to GosportNancy post re the withdrawal in the Brighton & Sussex area

healthunlocked.com/thyroidu...

From what I can gather the CCGs consultations are mainly closed to us mere mortals. Only being accessable to doctors ect. But does anyone know what the next steps of the process are ? At what stage / date will it be going through parliament ? Is that the final stage , What kind of time frames are we looking at ?

Many thanks for any insight

[lynmynott Partner Thyroid UK]

Hi Kitti1,

I don't think this is the official process. Many CCG's have been working on their own policies over the past year or two. The official NHS England consultation is going to be in around two months (so they tell me) and the results will then become guidelines.

They have confirmed that patients will be able to participate in the consultation and we will be spreading the link far and wide to get as many patients taking part to show them that T3 is very much needed.

Was sent this study today: karger.com/Article/Abstract... We need more of these!

[Kitti1 in reply to lynmynott]

Thank you very much for your reply Lyn.

So we shouldn't worry about the CCGs as such ? I spoke to my local office a couple of months ago and was told it was a closed process. I have heard that from others But have also been aware of a few which have included patients views.

Do these CCGs consultations have much bearing on the NHS consultations and outcomes ? Is it not at some point due to go through parliament ?

We definitely de need more of those

[lynmynott Partner Thyroid UK in reply to Kitti1]

Hi Kitti1

I think the local processes are closed but because of all the media reports, I think NHS England have decided to do a nationwide consultation. At the moment the CCG's can do what they like, unfortunately, although I have heard that some patients have been given back their T3. We are really hoping that the NHS England consultation will show that there are a lot of patients that really need T3 and that the CCG's will have to start prescribing it again.

Hopefully, our campaign will help too.

We are having problems with our website at the moment but as soon as it's sorted, we will be putting something on it about our campaign as well as on here and our Facebook and Twitter pages

[SlowDragon Administrator]

I have just successfully been prescribed T3 via NHS. Was initially told "no chance", but now got the OK. Not sure for how long.

Just had DIO2 gene test - unsurprised this has confirmed I have gene mutation (heterozygous). Not sure if that will sway decision on long term prescription

[Kitti1 in reply to SlowDragon]

That's great news SlowDragon , I hope it makes a big difference to you & that you get to keep it.

[TaraJR in reply to SlowDragon]

I've just done the D102 test too, just in case it helps as ammunition . It SO shouldn't have to be like this.

[Kitti1 in reply to TaraJR]

Were you positive for the gene ?

[TaraJR in reply to Kitti1]

I don't know yet, have only just done it. It was a gamble, as it cost £80. I can keep you posted. I'm maybe clutching at straws!

[helvella Administrator in reply to TaraJR]

It is DIO2 (three letters and a number) - not a letter and three numbers.

Important if you want to search for information. Also, important if communicating with a doctor who will scoff if you make any mistakes at all.

[TaraJR in reply to helvella]

Oh thank you helvella. I should've checked that I'd got this correct in my head! Way too busy at the moment to take everything in properly. But i must get all my ducks in a proper row before next endo appt next month.

[Angel_of_the_North]

I'm sure someone posted a think to a statement by the BTA or some such body that said that T3 shouldn't be denied on cost basis only if patient was doing well on it. Could someone report that link, please.

[SlowDragon Administrator in reply to Angel_of_the_North]

Here you go

british-thyroid-association...

[Angel_of_the_North in reply to SlowDragon]

Thanks