EU and Health

[meki]

How do we start to campaign for equal treatment for thyroidism across the EU seeing as both the French and Spanish appear to treat more favourably. As they want to standardise everything lets start here

[helvella Administrator]

Do we really want to import the banning of desiccated thyroid from France?

Rod

[greygoose]

Nooooooooooo! The French do not treat more favourably in many ways. If you want to go the French way you'll find your NDT made illegal!!! Not just difficult to get but against the law. Other hormones are illegal too.

Yes, you can get referred to an endo more easily - or just book to see one without even telling your doctor, if you like - but they are just as ignorant about thyroid as those in the UK. Your average GP knows nothing about thyroid - my first one kept my TSH at 9.5 for a couple of years (before I wised up) because he didn't want me to 'tip over' iinto hyper. He didn't have the first idea what he was doing yet assured me he had successfully treated many hypos. I could write a book about all the nasty things that have happened to me here. The endo that looked me straight in the eyes and swore there was only levo to treat hypo; the next endo that told me T3 would do me absolutely no good; the third one that told me he'd read my dossier and my case was far too complicated, he couldn't be bothered to take it on!!!!!!!

Be careful what you wish for, meki, it might not always be the way you think.

Hugs, Grey

[RedApple Administrator]

I'm with Greygoose... be careful what you wish for!

I've yet to be convinced there's another country that deals with thyroid problems significantly better than we do here. So rather than assuming the grass is always greener elsewhere, let's just focus on raising the standards here in the UK. You never know, if we all do our bit, the UK might one day be the world leader in thyroid care

[marram in reply to RedApple]

Or, maybe one bit of the UK - Scotland

[RedApple Administrator in reply to marram]

Good point, Scotland's off to a good start right now

[helvella Administrator]

One thing that really should become pan-European is patient information.

In my book all countries should have the equivalent of the EMC

medicines.org.uk/emc/

And, so far as achievable, we should be able to look up the Patient Information Leaflet for Thybon Henning 20 (German) or Mercury Pharma Levothyroxine (UK) or Sanofi Liothyronine (France) with equal ease - and, where a translation has been made, in any language we wish.

If a company imports more than very small amounts of a product, then making a translation and posting it should be mandated.

I would also wish to see ready availability of information such as recalls, shortages, changes to licences (new, withdrawn or variations).

Of course, there is no obvious reason to stop at the borders of Europe, but we do have easy access to the USA's FDA websites.

Rod

[roslin]

I come from sweden originally and I was told that Uk has the reputation there to be very bad at treating thyroid condition. When i looked into management in Sweden I could not see any significant difference. There TSH range may have changed but it still depends on the individual Dr what kind of treatment you get. It is also a lot harder to get e.g. NDT even when it has been prescribed by a dr.

I now live in Scotland but have not seen any change to the treatment after the petition to the Parliament and I don't expect it. When I spoke to my endo about it he had never heard of it.

It doesn't bode well. I don't see that policy will change if the medical community is not in agreement and I don't know how we can make them understand. One thing that may be of help is the Register of Counter Examples that TPA is collecting. It doesn't say to whom this is directed and when it will be submitted but I think it is a very good idea.

Roslinxx

[RedApple Administrator in reply to roslin]

Roslin, I hear what you say about the Scottish Parliament petition, but at least those involved are making their contribution to 'leaving no stone unturned' in this ongoing battle

[roslin in reply to RedApple]

Absolutely and I don't mean that we shouldn't fight for a change to the management of thyroid conditions. I know I must sound cynical. I just get so angry when I read the same story over and over, not only here but on international forums.

Roslin

[Clarebear]

I think I read somewhere that T3 isn't prescribed in Spain - but I may be wrong

[helvella Administrator in reply to Clarebear]

I too remember seeing it said. But that does rather question why this page exists:

tinyurl.com/d75tvxa

(Link to salud.es through Google translate.)