Cost of T3 to NHS: My GP was about to prescribe... - Thyroid UK

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Cost of T3 to NHS

Everdean profile image
50 Replies

My GP was about to prescribe me T3 until we saw the cost.

We were both horrified to learn that just one box of 28 tabs cost them £350. So to treat me per month it would cost them over £1,000.

She was very apologetic, bless her. I said I would continue to buy myself. She is consulting with her colleagues and getting back to me.

No wonder they are reluctant to prescribe.

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Everdean
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humanbean profile image
humanbean

T3 costs the NHS £350 per box of 28 pills. Everywhere else in the world the price is a lot lower. Go to Greece, for example, and you can buy a box for about 2 euros, over the counter without a prescription.

Marz profile image
Marz in reply tohumanbean

humanbean - tiz 1 euro and 15 cents - and each tablet is 25mcg so an even better deal 😊😊

EbonyEvans profile image
EbonyEvans in reply toMarz

Marz - it went up 1 cent. I have several boxes with €1.15 or €1.16 😱🤔 expiration date 12/2020 😂

Marz profile image
Marz in reply toEbonyEvans

Recently bought ?

EbonyEvans profile image
EbonyEvans in reply toMarz

I have a Greek Pharmicist who sends me them. They’re from June’s order.

helvella profile image
helvellaAdministrator

If your GP is really supportive, she could enquire about getting Sanofi Thybon from Germany or Sanofi Cynomel from France dispensed. (Although same owning company, they are different products!)

Might still be expensive, but likely to be considerably less than Mercury Pharma, at least if there is a cooperative pharmacist in your area.

jimh111 profile image
jimh111

I believe 28 tablets cost £258-20 but the price may have gone up again. If it is possible can you ask your surgery to look up the exact price. This would be really useful as I've contacted the Competition and Markets Authoriry about this.

Everdean profile image
Everdean in reply tojimh111

The Dr said it was £350 per box. And for the 3 boxes per month that I need it would be over a £1,000. That's all I know jimh111.

jimh111 profile image
jimh111 in reply toEverdean

OK. It may be that they were looking at a different dosage such as 10 mcg which works out more expensive. Or perhaps her system quoted the wrong price. As far as I can see the price is still £258-20. AMCo stopped increasing the price when The Times picked up on the issue.

Serendipitious profile image
Serendipitious

A few days ago Boots quoted me £456 for 10mcg of T3 for two months.

Clutter profile image
Clutter in reply toSerendipitious

Serendipitious,

It would have been cheaper if Mercury Pharma 20mcg tablets which you can halve with a pillcutter had been prescribed but still pricey at around £258 x 28 20mcg tablets.

Serendipitious profile image
Serendipitious in reply toClutter

Yes the pharmacist didn't suggest that and gave me the price for the actual product. I'm going to ask my GP to see if she will prescribe but I'm not keeping my hopes up. Failing that I will buy it from somewhere somehow.

shaws profile image
shawsAdministrator in reply toSerendipitious

It is scandalous and it would appear no authority has looked into this price hike and it was the perfect opportunity for the BTA to put a blanket ban on T3 overall. They don't like T3 but most bodies love it - why because we feel much better and healthy (usually).

shaws profile image
shawsAdministrator

If your GP is willing she might prescribe on a named-patient basis for the other non-licenced T3 (in UK) . Many wont as they have to take full responsibility if you have a reaction (which you shouldn't have).

About six months ago it was around £30 I believe, then the pharma company hiked up the price which is quite common nowadays with pharma companies

That's why the BTA has withdrawn T3 from very many patients whose lives depended on it and it has caused a panic.

Serendipitious profile image
Serendipitious in reply toshaws

Might be off topic but how can I convince my GP to prescribe T3? I have a letter from a private endocrinologist recommending I try it. Although he did say it should have a "modest benefit". I have private blood tests which show a low free T3 which is below range. I've got an appointment on Tuesday but I'm not feeling that confident.

shaws profile image
shawsAdministrator in reply toSerendipitious

Why didn't your Endocrinologist give you a prescription,? maybe because the cost would be extortionate now - over £300 for a month's so I believe.

I definitely don't agree with 'modest' benefit. If I were you I'd source my own (you need to put a new post and ask for a Private Message to be sent) then you should first try adding some to your levothyroxine. That might be sufficient for you to feel well.

Serendipitious profile image
Serendipitious in reply toshaws

Yes he did tell me about the cost. He has now given me a private prescription too but if this is something I may need for the rest of my life I think the cost will be prohibitive. I'll be paying to see him every so often plus blood tests. Probably paying for writing out the prescription too? I'm not sure how he gave that to me without charging me for it. I don't have private medical insurance anymore. I just want to see what my GP says and then I will source T3 privately.

shaws profile image
shawsAdministrator in reply toSerendipitious

It is for life. I hope it works for you. It is worth trying T4/T3 combination first as that works for a lot of people particularly if it is 3:1 basis (I have read).

Serendipitious profile image
Serendipitious in reply toshaws

I hope it does too. I don't want to waste anymore time feeling unwell. What do you mean by 3:1 basis?

shaws profile image
shawsAdministrator in reply toSerendipitious

Sorry for my late reply but couldn't access my emails. 3:1 means a combination of T4/T3 i.e. 3 T4 to 1 T3 = 75mcg to 25mcg T3 (or nearest equivalent to your optimum dose

Avidreader profile image
Avidreader in reply toSerendipitious

Very late to this ! A year in fact ! But I’m doing so well on Nature Throid ( after feelings so bad on Levothyroxine)- am I missing something here ?

Janey130 profile image
Janey130

I just had a phone call from pharmacy to say my gp had sent a private script to boots and called me to see if I was willing to pay £1400 for a months supply ????? I nearly fell over and told them to forget it and I would self medicate with my self sourced meds !!! 😱

shaws profile image
shawsAdministrator in reply toJaney130

I agree with reallyfedup's comment. Contact MP.

helvella profile image
helvellaAdministrator in reply toshaws

If in Wales, contact your AM as well.

If in Scotland, contact your MSP as well.

If in northern Ireland, contact your MLA as well.

shaws profile image
shawsAdministrator in reply tohelvella

:)

Avidreader profile image
Avidreader in reply toshaws

Can we all get together & do this ? Or have you done this already through Thyroid . org ? Health secretary? Mp ? Also can I buy Nature Throid over the counter in Spain does anyone know ? Cost ?

helvella profile image
helvellaAdministrator in reply toJaney130

Another reason not to let doctors send prescriptions to pharmacies.

You need control - you then at least have the option of shopping around. Even it everywhere is too expensive you are not a captive market to Boots. Or should I say, Walgreens Boots Alliance?

Its so ridiculous can't they just buy it in from Greece? Or is there some permanent contract with the UK supplier. Don't know how it works.

helvella profile image
helvellaAdministrator in reply to

The problem is that if no company applies for a UK Product Licence, no-one can sell it. (Except under the regulations which allow "specials".)

We can speculate and speculate on why no other company sees fit to enter the UK market, but until some company does, we seem to be rather stuck with Mercury Pharma.

We can try to fathom why system seems not to have any mechanism for getting over this. Or if it has a mechanism, why it has not been used. We need someone who really understands the details to explain!

princessze profile image
princessze

I spent many years taking levo and never feeling well. Also spent many years not getting anywhere with doctors with them telling me there was no other treatment . long story. I came across this site and gained knowledge with the help of all you good people. Another long story but did in the end get liothyronine. Felt so so better not totaly. Maybe i was wrong but wanting even more improvement was tried on ndt. Found i started to go down again. Decided going back to liothyronine was prob my best option. Put in for prescription at gps to be told they no longer supplied it. Spoke to endo on phone who also refused it saying there is now a blanket ban as it is too expensive and have to go back on levo. Very disheartened all them years and effort to fight now gone and back to square one. Back to misery 😞

princessze profile image
princessze in reply toprincessze

Forgot to say. Endo said as i was so ill on levo she would give me it in liquid form to try. With it coming up to the weekend now and i would be left with no medication would phone gp to get me a prescription. When i phoned gp to ask if i could pick prescription up i was told they also do not supply liquid thyroxin. With a fight got to speak to gp who said it was because it was too expensive 100 pound a week. He done it as a one off. Next problem no pharmacy stocked it and would b monday before an order could b made and would take a couple of days so have ended up with no medication afterall. All to stressful for me. And seems to me just as expensive as liothyronine. Puzzled to say the least. 😟

Avidreader profile image
Avidreader in reply toprincessze

It’s so strange how we’re all so different ? I feel amazing on NDT - so far ! 4 months - live changing - but the autoimmune diet had made so

Much difference too - boring but works

Glynisrose profile image
Glynisrose

Your GP should not be prescribing by cost!

jimh111 profile image
jimh111

If you wish to complain about the price of liothyronine you should complain to the Competition and Markets Authority using this form gov.uk/government/publicati... . They have been asked to look into this issue by the Health Minister following the articles in The Times. They are due to report soon so now is a good time to tackle them. They prioritise their work based on the impact the price has on consumers, so it is important to be brief and point out the effect it is having on you. It is also worthwhile contacting your MP but you will need to see them in person, they get far too many letters to remember individual cases.

Yv_UK profile image
Yv_UK

Just so you know, doctor's prescriptions from EU countries are valid throughout the EU. I was able to get my Liothyronine (Cytomel) in the Netherlands for a fraction of the UK price by ringing up a local farmacy and explaining the situation, sending them the prescription and then asked a family member to pick them up for me.

Everdean profile image
Everdean in reply toYv_UK

When you said " Local Pharmacy" Do you mean in the Netherlands or here in UK?

Yv_UK profile image
Yv_UK in reply toEverdean

I meant a local pharmacy in the Netherlands (local to where my family lives)!

janveron1 profile image
janveron1

Endos who are with the NHS cannot prescribe T3 either. Jeremy Hunt has a bill going through parliament on this matter at the moment as the price hike covers many drugs. I do not believe that purchasing from other countries is currently permitted for the NHS.

Janveron

judycopywriter profile image
judycopywriter

I picked up my T3 prescription yesterday and was surprised to find Thyron in the bag. I asked the pharmacist about it as I know the NHS has previously been forced to buy in supplies from Europe when Mercury had production issues, and Nice (I think) had to write to pharmacists because some people ended up getting the wrong dose. There are reasons for sticking to meds that NICE has validated....Anyway, the pharmacist said he would find out and phone me but I haven't heard. The pills are bigger and flatter, making them much easier to cut. It's too soon to know if I'll feel any different. But this could be IMPORTANT: T3 has other uses e.g. in psychiatry, and patient leaflets won't tell you everything about how a med might be used. But here we have a tablet that has thyroid in the name, and the PIL makes specific mention of 'suspected T3/T4 conversion weakness'. The Mercury leaflet does not. This could be useful evidence for anyone whose GP is behind the curve and unaware or sceptical of conversion issues.

judycopywriter profile image
judycopywriter

The BTA gets a lot of stick for its hostility to T3. But they are now extremely pissed off that their 2015 position statement is being misused by health authorities, and seriously annoyed at Mercury price hikes. "The BTA does not support the sudden withdrawal of L-T3 therapy and this practice does not in any way reflect our position statement." I'd wager this is more about defending the supremacy of their clinical judgment than responding to the pleas of patients, but it's interesting none the less. Have a read. british-thyroid-association...

helvella profile image
helvellaAdministrator in reply tojudycopywriter

I noticed that the bulk of the information is either quoted as "UK" or "England". Set me thinking, do the constituent countries of the UK have to pay the same prices for medicines? Could, for example, Scotland decide to negotiate a lower price with Mercury Pharma? Could Wales decide to support importation of another European make - like Sanofi Henning Thybon? Indeed, what is the relationship between the MHRA and the individual countries?

Note that even if the BTA is generally not happy at prescribing T3 in primary hypothyrodism, there really is nothing else for resistance, or to help during thyroid cancer treatment. Nor for its effect in mental health. Or to reduce the impact of blood reperfusion in some forms of surgery.

Quokka profile image
Quokka

I've just joined this forum as I'm horrified to see that the NHS Clinical Commissioners are planning to ban liothyronine.

I have been treated for an underactive thyroid for 33 years. For the last 16 of those I've been on a combination of levothyroxine/liothyronine which makes me feel human- not tired or depressed. An endocrinologist prescibed it and was happy to accept my own judgement of how I felt.

My pharmacy has just quoted me £222 for 28 mcg tablets bought on private prescription- 1 month's supply.

On June 3rd 2016 the Times reported that between 2011 and 2016, Mercury Pharmaceuticals increased the cost of Liothyronine from £34.65 to £198.72. It's obviously still going up. I've just written to my MP to ask why the NHS can't buy from a cheaper source rather than banning the drug as 'ineffective'.

EbonyEvans profile image
EbonyEvans

If you can get a prescription or pop over to Amsterdam. There’s a pharmacy in the airport that can get them same day if you order before 2pm. Also the same for the pharmacies in town. €3.20 per 28 of 20mcg. I forget the brand name. Also Ryan air and their £9.99 single flights are a god send. I think I paid £27.98 return. If you have enough energy and can do a day return. It might be well worth it for you. Btw customs informed me 3-6 months worth is an ‘okay’ amount to travel over for. But are looking for ‘hard drugs at customs. I checked and you can go through the green channel. Highly unlikely to be stopped but maybe take a letter from your doc or photocopy of the prescription pre use to show why you have so many.

Leyla123 profile image
Leyla123 in reply toEbonyEvans

Hi

I have a private prescription from my endo so I guess I could use this? Do u definitely need a prescription though. Also can u get NDT as well much cheaper than here? Do you know.

Kind regards

EbonyEvans profile image
EbonyEvans in reply toLeyla123

Depends on which company / brand you use. You’d need to go to Thailand or Canada. American needs a prescription - I believe an American one. But you do not need one to order as over seas rules are different. But factor in 20% customs charges if you order over £85 worth and Royal Mail may charge their £8 or 8%

sassicat profile image
sassicat

Update from the Competition and Marketing Authority, who are investigating price fixing:

As of January 2018 - the Decision was made "to focus investigation exclusively on liothyronine and de-prioritise investigation into another product:.

gov.uk/cma-cases/pharmaceut...

Leyla123 profile image
Leyla123

Hi

Do you need a prescription at all

Thanks

EbonyEvans profile image
EbonyEvans in reply toLeyla123

Yes. For Amsterdam

in reply toEbonyEvans

That's an interesting snippet. I currently post my prescription to a pharmacy in Germany, and they post me the T3. I wonder if your Amsterdam pharmacy would do the same for you?

bossbird profile image
bossbird

This is an absolute scandal and criminal that such a cheap med is so expensive to the NHS I wrote to the gmc years ago when the price started to rocket but got no where it needs a bigger voice

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