No more T3 in France! Where can I get some please? - Thyroid UK

Thyroid UK

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No more T3 in France! Where can I get some please?

joboise profile image

My pharmacy couldn't fulfill my prescription today and when she checked she said there was nothing in the pipeline. She phoned round other local pharmacies but they had none either so she phone Sanofi direct and they said they hadn't got any stocks and could say when/if there would be any more.

So now the shock and anger have subsided the most important thing is to make sure I don't run out. I would be really grateful for messages about who is a reliable online supplier.

I am still angry that they can just run out of something that I regard as essential, I could not face going back to my pre T3 days when I was the walking dead.

Since being on T3 my blood tests are enviable, so those medics who were minded to stop it just because they could, had to admit I was fine and keep prescribing. I've had quite a few changes of Dr (retirement/pregnancy/left the area etc) so finding one that would keep prescribing has always been a bit of a challenge. Just got settled with a lovely new DR and now this!

12 Replies
helvella profile image
helvellaAdministrator

Found an interesting PDF on an interesting French site:

Victimes du nouveau LEVOTHYROX vnlo.fr/

They link to a PDF from here:

forum-thyroide.net/

And that is:

sd938b88fcdfbde6b.jimconten...

All that to quote one little sentence:

▪ Cynomel: supply alert resolved? Attention because sensitive specialty

(cancer brakes, T4> T3 conversion problems)

The question mark is worrying.

joboise profile image
joboise in reply to helvella

Thankyou for that.

It is worrying because there definitely isn't any Cynomel available and nothing planned for the forseeable future. I'm not sure what they mean about the T4 to T3 conversion problems, because it seems to indicate that that is a reason not to take it?

I think I have found a source online, but would still appreciate any recommendations.

I feel angry and let down by the French healthcare system, which is expensive and generally very good. No warning, no apology and no suggestions about how I am supposed to survive.

The debate about the change in the formulation of Levothyrox has infuriated me. From memory they added something that effectively stopped it from being absorbed properly in the gut. Many women suddenly found themselves in pain, exhausted, losing their hair etc and complained. The response, as reported in my local paper, was that there is an outbreak of mass hysteria among women who can't cope with change.

helvella profile image
helvellaAdministrator in reply to joboise

I rather thought that the conversion problems bit was an added "this is why people take T3".

In the UK, the Teva make, when it was re-introduced, has also been very controversial with a large number of people unable to tolerate it. Its new formulation also contains mannitol like Levothyrox.

joboise profile image
joboise in reply to helvella

Ah that makes sense. I wonder why they suddenly need to add mannitol?

helvella profile image
helvellaAdministrator in reply to joboise

Mannitol, although apparently more expensive than lactose, has certain manufacturing advantages. Not being a manufacturing pharmacologist, I'd rather not try to explain further :-) but I did manage to find some readable explanations quite easily.

It also provides what so many patients have been asking for - lactose-free tablets!

A combination of lack of adequate testing and wholesale change without any readily available alternative appear to be the issues. They might well have gone through the usual testing in healthy volunteers but, I suspect, they did not recruit volunteer hypothyroid patients. And we are not the same as healthy volunteers.

joboise profile image
joboise in reply to helvella

Whatever the reasons, it has made many many people very ill and they aren't listening. Meanwhile I am struggling to find a reliable source of T3. I am finding this very frightening and stressful now.

I bought some at my local pharmacy here in France last Friday they keep stock now. I don't use a prescription they never ask for one either. Where are you in what Dept?

joboise profile image
joboise in reply to

Hi,

I'm in Puy de Dome, where it has been really difficult to get T3 even with a prescription. I could write a book.....................one chemist told me it wasn't available at all in France! Where are you? I would happily travel for T3.

in reply to joboise

Which Dept is Puy de Dome number? I am in Dept 86 halfway between Poitier and Limoges i.e. in the middle of nowhere.

joboise profile image
joboise in reply to

It is Dept 63, so further East than you.

Could you give me the name/address of your pharmacy so I could contact them to see if they can fill my prescription please.

Hi I will get it tomorrow for you OK?

joboise profile image
joboise in reply to

Hi,

I don't think helping me out counts as trafficking, you won't be out of pocket. What a difference between our areas!

Huge thanks

Cynthia X

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