Catching up to T3 disaster

[Louisekate]

hi everyone this is my first post and I must admit I wouldn't have thought of joining a support website had my doctor not just taken me off T3. About nine years ago I had thyroid cancer , two years later I was still struggling on T4 but was given T 3, and haven't looked back since thyroid wise. So it was a huge shock to be given the news that I couldn't have T3 anymore and having now researched it all on the Internet, I am further shocked to know that people have been going through this over the last three years . So how do we campaign and raise a public protest about this there must be loads of people who are suffering because of this ?

[radd]

Louise,

Welcome to our forum and sorry to hear you are not feeling well.

Many of us (including myself) have had our T3 prescription stopped after having good results from medicating it .

There was two big article in The Times recently detailing the extortionately inflated price of T3 & other drugs. Liothyronine (T3) (both 5 + 20 mcg) is ONLY licensed for manufacture and selling in the UK by Amdipharm Mercury Ltd (AMCo) who are charging criminal prices.

T3 can be purchased abroad for a fraction of the cost and is available OTC in most European countries. It is of great concern that in Europe, the cost of L-T3 is a mere fraction of what it costs in the UK.

Sweden - 100 tablets of L-T3 = £21.10

Finland - 100 tablets of L-T3 = £15.81

Norway - 100 tablets of L-T3 =NOK 254.50 = 27.51€ = £21.65

Denmark - 100 tablets of L-T3 20mcgs – Thybon 20 Henning = DKK 190 = 25.53€ = £20.09

Germany -100 tablets of L-T3 20mcgs -30.15€

Turkey - 100 tablets of L-T3 – Tiromel = £1.25 (info. from private correspondence)

UK -100 tablets of T3 - Liothyronine = £922.44 (based on 28 tablets at £256.20)

The CCG MUST provide a written explanation as to why treatment has been stopped. They can NOT stop treatment on the grounds of cost alone.

Many members buy from abroad and self medicate. If you post a question re T3 suppliers, members will respond.

[puncturedbicycle in reply to radd]

radd I am reeling reading that. Even in the US, infamous for high prescription costs, I got a three month supply of t3 for about $100.

[Louisekate in reply to radd]

Thanks for this the price comparison it's really useful and I am going to use it in a letter to my mp if that's ok. When you say the CCG must provide a written explanation do you mean to individuals or in a policy document? I have a copy of my local policy mentioning black rag or blacklisted drugs and basically it just says tough for the patients but the letter template which the GP should and didn't use to me talks about health inequality, limited funding etc so is that not simply stopping treatment on grounds of cost?

Where will I find the info about not stopping t3 on cost alone please? Is a legal challenge possible for this do you think?

[Gcart in reply to Louisekate]

Hi I saw my MP Liam Fox. Showed him the report in the Times and he has written to the appropriate minister. I doubt if anythi g will come of it . They must know what is going on . Do try though. I to had TT for cancer this year and am self medicating.

[Louisekate in reply to radd]

Hi I have replied to you but it's gone in the reply box to the one below, sorry I'm new to this.

[puncturedbicycle]

Good god, my gp said it was used for people w thyroid cancer, so I would have expected you to be getting it even if they stop mine. I believe we need clinical evidence to prove that some people just don't do well on levo alone. That might hold water in this arena. Just 'feeling better' isn't enough apparently.

I'm waiting for the axe to fall on my script tbh.

[Louisekate in reply to puncturedbicycle]

Actually t3 is used during the treatment but only for a very short time but once the cancer is gone you're just like any other thyroid-less patient. I was just given t4 afterwards but the dose kept going up and up because I still felt ill until I was given t3 and the t4 dose was brought down then I was right as rain and pretty quickly too. The doctors claim that the effects of t3 are all in the mind and that there's no proof of benefit shown in blood tests I think that's our biggest problem no measurable proof just patient's words which are obviously not enough.

[puncturedbicycle in reply to Louisekate]

Ok, I see re cancer.

You sound the same as me. My results looked great on levo so I can't even claim I wasn't converting, and there was no point in increasing levo as I just would've gone hyper. I know the improvements were not down to the placebo effect as so many concrete improvements occurred, like you, very quickly (almost overnight in fact).

Isn't it funny though, when I was depressed and given so many different antidepressants, no one said ok, the drugs aren't working so I guess this isn't depression, though they will say your levo is optimal so your symptoms can't be from hypothyroidism.

If you could see the difference in my hair, it's amazing. I suspect my endo would say that would've happened anyway on levo over time, though after three or so years on it my hair just got thinner and thinner, and within months of taking t3 I suddenly had a weird halo of shorter hairs growing in, all the same length.

[Raucous in reply to Louisekate]

Of course if diagnosis followed the 'old' method of looking at symptoms and other physiological factors associated with Hypothyroidism rather than just a blood test then there would be proof because the doctors would be recording improvements! It is quite mad!

[Louisekate in reply to Raucous]

Yes it's a pity some of the thyroid consultants couldn't have a dose of hypothyroidism to see what it's like, I think they would take more interest in symptoms then!

[Raucous]

I wonder if Thyroid UK could write a letter with whatever supporting evidence there is out there that we could all sign - or maybe we can start an online petition?

[galathea in reply to Raucous]

The tpauk petition, which ran for some time collected 2,500 signatures from people who were better with t3 then got worse without t3 and better again with it.

No idea what they did with the info, i think they tried to use it as proof but were shouted dpwn by the medical establishment.

Sheila who runs TPAuk would be the one to ask, but sheis incapacitated since suffering a stroke some two months ago.

Xx g

[shaws Administrator]

I would see your MP to complain about this withdrawal too. The experience I had on levo only was horrendous and I have a thyroid gland.

You can also become a member of Thyroiduk.org.uk who have been at the forefront of trying to change the procedures of diagnosis and prescriptions.

The British Thyroid Associations have been against T3 being prescribed but now they have succeeded as the cost has become astronomical.

T3, to me, means a healthy productive life, or a non-life.

I give a link below and if you also look down the left-hand side and see campains etc you will realise what has been going on for quite a number of years.

thyroiduk.org.uk/tuk/member...

We also had an extremely successful Conference in 2014 with many members attending from all over the country.

[les5889]

I read the "justification" bulletin, and it's chilliing. Sounds like Big Pharma got to the British government, because that is chapter and verse the reps tell the docs here in the States. I just read another article that says that American banks are going to start shutting overseas pharmacies down by denying payments as they are sent through...a push to keep prescription medicines in the hands of dispensing doctors where they belong, ha!

This is a very disturbing trend, the idea that Americans and Brits alike now have another barrier to obtaining affordable and life-preserving medication, under the guise of "it's for our own good." FYI, I would appreciate any and all messages regarding other sources for T3, as my usual supplier has not been able to process my credit card or wired funds in the past week and I am getting VERY nervous.

FYI, I am one of those people who can't process ANY amount of T4. Even a tiny dose of NDT sends me hypo.

[UrsaP]

There is!