PresQuipp Bulletin

[lynmynott]

There has been a lot of worry and concern over the past couple of days in respect of some information that has come from another forum.

This information concerned an old PresQuipp bulletin (DROP list) regarding the use of T3.

Unfortunately, because of the name of the bulletin, it has been assumed, wrongly, that T3 is going to be dropped from the prescription list.  According to PresQuipp's Bulletin: The PrescQIPP DROP-List (previously called DRugs Of low Priority)1 was first published in 2012 and was an accumulation of medicines that PCTs within the East of England considered as low priority, poor value for money or for which there were safer alternatives. The DROP-List has now been updated and incorporates drugs prescribed across the NHS that are considered low priority and poor value for money and also some of the NICE do not do items, which can be easily measured using prescribing data. It also incorporates drugs which could potentially be provided as self care, with advice and support from the community pharmacists, and discusses the potential to support medicines optimisation for the drugs listed. The DROP-List acronym now represents Drugs to Review for Optimised Prescribing.

In a later (up to date) DROP list (February 2016) liothyronine is mentioned along with the updated BTA Statement, which, as we know, states that some people may need T3 along with their T4.  PresQuipp are simply stating the facts - the facts being the information in the latest BTA statement.

Obviously, Thyroid UK is very concerned about how things are going in respect of the prescribing of T3 and this is why we will be discussing the way forward at our Strategic Planning meeting on 30th April.  This has been on our agenda to discuss at this meeting for some time along with other projects that we think will help patients with thyroid disease.    Thyroid UK is always working behind the scenes to help people with thyroid disease.  When we release information, we always try to ensure that it is accurate and up to date.

We will keep you all informed of what was decided at our Strategic Planning Meeting in respect of any campaigns and projects that we decide to do.

Lyn Mynott, CEO, Thyroid UK

[shaws]

Thank you Lyn and staff for keeping an eye on what's happening re T3 in particular and for creating Thyroiduk website.

[scorp1o]

To be strictly accurate, the BTA statement also suggests that anyone who thinks they need T3 is probably mistaken as blind tests have not corroborated any need for it. It also stresses the dangers of taking T3 and the whole tone is that T3 is not justified. Nowhere does it speak of anyone who cannot tolerate T4 and is on T3 alone - it speaks of combined treatment and basically says that T3 should be discontinued or patients warned of dangerous longterm effects. That's not exactly reassuring for those of us on T3 alone, is it?

My personal experience is very much that previously prescribed T3 is definitely under threat. 

I do support ThyroidUK in their fight to ensure that all patients can be prescribed T3, as others have not been as lucky as me in having it in the past.

[Zephyrbear]

Thank you so much for doing all you can with regard to the continued use of T3. To some of us, this little pill is the difference between being able to function as a relatively normal human being able to live a fairly full life and being nothing better than a zombie! If you need personal testament to add weight to the argument, I am sure there will be many of us here more than happy to supply it by the bucket load!

[MariLiz]

This is a very sensitive issue for lots of us on here. I was especially angry that me endocrinologist said I needed it ( after a trial that I paid for privately), but my GP surgery have refused to prescribe it for me. Even after he has written to them twice. 

[lynmynott Partner Thyroid UK in reply to MariLiz]

This is outrageous but is happening a lot now.  That's why we decided to put it on the Agenda to discuss.  It makes me so angry but we have to try to stay calm and try to negotiate with them.  Telling them what you think they should do never works.

[Babette in reply to MariLiz]

I had a similar situation.  My GP, who I really like and is the best one I've seen for years, said that he didn't know how to treat me on T3.  The local CCG doesn't like prescribing it, presumably because of cost, but they're covered by a larger group of CCGs and they seem to think it's fine. 

I let the endo and my GP fight it out while I sourced it from abroad.  The endo won, although my GP didn't actually tell me he would prescribe it and I only noticed when I signed up for patient access (EMIS) and saw it had been added to a list of meds on repeat prescription.

Good luck!

[MariLiz in reply to Babette]

I've sourced my own, and will tell my GP when I can actually get to see her. The private endo has offered to monitor me, but obviously that will cost.

[Babette in reply to MariLiz]

Have you seen an NHS endo?  It's ridiculous that you should have to pay just to feel better.  If you can see one, be careful that they'll support you taking T3.  By chance I asked to go to a large teaching hospital rather than my local one.  The local endo does not recommend T3.

I saw the GP maybe once every 5 to 10 years with something relatively minor - an injury or chest infection - and genuinely thought the NHS was a safety net that would be there if anyone really  needed it.  I was more than happy to contribute to it.  I'm so disappointed.

[MariLiz in reply to Babette]

My GP only referred me to a private endocrinologist. The NHS one I'd seen at the start of my thyroid problems had left the UK, and was working abroad.

[Babette in reply to MariLiz]

It means more delays but could you push to see an NHS endo?  Or change your GP?  (I did that when the previous surgery said I had "non clinical reasons" for my symptoms when I didn't feel any better on levothyroxine.)

[MariLiz in reply to Babette]

I'm reluctant to change as she's been very good and agreed to my extra B12 injections. I'm not sure another surgery would be as helpful with that.

[Hidden]

I don't know how I missed this first time around.  I'd be dead if it wasn't for liothyronine!  Fact not fiction as I have anaphylaxis to thyroxine.  'M'

[Musicmonkey in reply to Hidden]

You are a very convincing case in point Mabsie

[Hidden]

Can you tell me if this applies to Scotland as well please? I'm apprehensive because I've only been on the T4/T3 combination for five weeks and am waiting to see my endo privately in a few weeks time to decide if it's making a difference or not. My new GP seemed quite willing to prescribe it but this might change - especially because I'm moving around and registering with different GPs. 

The main difference I've noticed so far is that my circulation is much improved and I'm sweating again. I don't want to start getting used to a medicine only to have to stop because my GP can no longer prescribe it? 

My private endo used to be head of the BTA I believe and has written BMA publication available in most pharmacies. Surely if he is recommending it for some patients,  this must count for something? 

[lynmynott Partner Thyroid UK in reply to Hidden]

Hi Twitchytoes,  As far as I am aware, the health boards in Scotland are not behaving in this way.  However, it is very difficult to actually get a doctor to prescribe T3 in Scotland so you have a good GP.

[Hidden in reply to lynmynott]

I know I do and thank my lucky stars but unfortunately we have to move again at the end of the summer and my old island GPs will be less willing I am sure!