My gp has said he's going to stop prescribing me Liothyronine, help!

I was diagnosed with hypothyroidism 9 years ago. After endless trips to the gp because I knew something wasn't right but my blood tests always coming back at 0.1 inside the 'normal' ramge, I went and saw Gordon Skinner who diagnosed me. He prescribed me thyroxine and I got to 200 mcg, then as he felt that was a high dose he said Liothyronine was the way to go and for me the 2 meds together has worked brilliantly. My gp has always been supportive until 2 days before Christmas when he told me that he wasn't going to prescribe it any more as it's too expensive and he wants to find a cheaper alternative. In his words 'if you had to find £600 a month, you'd baulk at it'. He said he's going to find a cheaper alternative that will be just as effective. As far as I know, there is no alternative and I don't want to increase my thyroxine as I'm on a high dose already and that has other health implications. Do you know where I stand? Do I have any rights? He's been prescribing me this happily for 9 years, can he just stop? This is all on top of the stress of my son going in for another operation on Friday and having to write a statement of education for my him for him starting school in Sept next year :/

23 Replies

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  • Tell him you'll buy it online and send him the bill. With a little googling I found an online, UK steroids shop claiming to sell 30 x 25mg tablets for £14.95. I won't post the link as I don't know if it is genuine.

    The cost of medicines to the NHS is a huge scandal imho. I recently wrote to my MP about the difference in cost of hydrocortisone via the NHS and purchased online. I had a long, rambling reply from Lord Howe.

  • Hi rosetrees, do you know how much hydrocortisone costs in the UK on private prescription? When you say of cost of HC purchased on line, do you mean on prescription? I'm asking because I've been buying HC from abroad and it can be quite expensive. Thanks.

  • Hi Jow. I actually use HC cream - I can PM you the link. I also bought some HC 5mg tablets from an online chemist that someone PM'd me. I'm staying with my sister right now, so can't go and look in my kitchen for the paperwork to see where they came from.

  • Yes, please, I'd be grateful if you could pm me the details. Thank you.

  • no no, if you have such a cooperative GP then DO NOT say you will buy it yourself! you should be entitled to your free NHS medication for your chronic condition.

    Ok, the only T3 (liothyronine) which is 'licensed' in the UK is the one from Amco Amdipharm which comes at an extortionate price of £104 per tub of 28 pills.

    Tell your GP he/she can prescribe other brands of liothyronine, they are the same thing: ie they ARE liothyronine only a different brand.

    your GP can prescribe CYNOMEL FROM SANOFI-AVENTIS (in France, be careful this is the FRENCH CYNomel, and NOT the mexican), it comes in 25mcg tablets and your local pharmacy can procure these from the importers.

    when I asked 10 months ago this was quoted to the NHS as approximately a little less than £30 for a 28 tablets packets (or 30 tablets cannot remember)

    tell your GP you can help him save at least £60-70 per 30 tabs.

    All the GP has to do is prescribe: (say you take 3 tabs per day)

    x 1 25mcg Cynomel three times a day

    for the treatment of hypothyroidism (he HAS to write this as it is an unlicensed medication the brand Cynomel)

  • Woops. Sorry. My reply was meant to be facetious - as in, shame the doctor into continuing to prescribe. Self-fail! You're 100% right, of course, that the doctor should continue to prescribe. Let's hope that the alternatives you just mentioned are the ones he was looking into

  • I hope so too Rosetrees. If the NHS stopped prescribing my T3 I would be buying it myself in a shot! but I would never admit to them to be able to do this easily, I'd probably scare them into me giving them a hard time as they gave me no choice but to buy 'underground/dodgy' medication from unreliable sources somewhere from a remote part of the stratosphere! :D

    Hopefully stephsteph GP is looking into the above (ie unlicensed T3 brands which are hugely cheaper) x

  • That is really useful info! I wonder if my GP will prescribe if I tell him this. Thanks for posting it :)

    Stepsteph, I hope your GP does what nobodysdriving says. That must have been scary news to receive :(

    Carolyn x

  • Thanks for this info NBD.

  • I would be extremely wary of buying prescription-only medicines without a prescription from UK sources.

    Anyone selling like that is breaking the law and almost certainly knows very well that is the case. It is difficult to trust people who happily break laws for their own financial benefit. If they are willing to do that, why take the care to supply genuine produce?

    At least some of the internet suppliers are operating within the laws of their own country.

    Further, any company so supplying is quite likely to disappear in a moment of the MHRA get to know of them. So potentially no continuity of supply either!

    Rod

  • Tell him T3 cures all types of dementia. I've no idea if it does, but I bet it would focus his attention ;)

  • I'm not sure what 'rights' you have here - obviously the NHS has to try and save costs and prescribing generic drugs vs brand names is normal. However I'm not sure they can just withdraw your necessary treatment on the basis that it is 'too expensive'.

    If it were me I would write to the GP politely asking them to clarify why they will no longer give this medication. I would want them to confirm in writing it is a COST based decision and NOT a medical judgement. If it is purely a cost thingn I would be tempted to go through every body possible - find the local complaints procedure and follow it, maybe even go through the local MP or even the media!

    I'm trying to figure out how you can be 'costing them' £600 a month as the BNF states 20mg of Liothyronine T3 costs about £60. What dose are you on? T4 is dirt cheap.

  • Why are drug companies allow to do this....just because it is a government contract??? You'd think such large volume would lower the price. The cost out of Mexico is 300 tablets of 25 mcg., $65, U.S. Such a pity.

  • the BNF prices are 'notorious' for having hugely wrong/low prices on there, one has to look at the 'NHS Drug Tariff' see here:

    ppa.org.uk/edt/December_201...

    this is the up to date and correct price of drugs

    you will see that Liothyronine is £103.40 ( you can find it in this section of the electronic drug tariff: Part VIIIA products L )

  • The BNF has made substantial improvements in the prices they quote over the last year or so - but they are still very often way behind price changes.

    For things that have not changed much, the prices are possibly reasonably accurate as a guide, now. (They used to be awful.)

    Rod

  • I very much doubt any GP will put into writing that wirhdrawal of T3 is due to cost. I suspect they'll have been instructed not to do so. They'll fall back on lack of random controlled trials, lack of evidenced base of efficacy etc. all the bovine splatterance uttered by the RCP, BTA & Society of Endicrinologists.

  • I can't get my prescription for T3 from my GP either, I'm on a small dose 5mcg twice a day and it's not manufactured in the UK, mine is imported from Canada at a cost of £700 for 100 tablets. I'm having to get my endo to prescribe it via the hospital which is a pain as it takes 2 weeks from asking for the tablets to getting them and I have to drive a 20 mile round trip to collect them. I've argued with my GP but he's won't budge, he says the research is lacking and until this changes he won't. I'm proof it does work, I'm doing so much better on it. I'm not sure what the answer is. Good luck!

  • I am on the UK T3 and even then I also have to go to my hospital every time I need a script, 'disgusting', have complained but they just come up with 'ramblings' every time. My GP is not using the 'cost' as an excuse as she's prescribed before, but says I need to be on a stable dose for a while and under specialist supervision. I have been on the same dose for past year so I don't know how long she wants me to stay on same dose, 100 years?? what a joke

  • Anyone being told they have to actually change medication (e.g. T3 to T4) might find some ammunition and interesting reading here:

    healthunlocked.com/thyroidu...

    Rod

  • I feel for you. My daughter has just been put on warning by her GP that she will not be able to prescribe T3 in future. Like you, she was originally prescribed by Dr Skinner years ago and this is the first time she has had a problem. Apparently, the price of T3 has risen to over £100, but you can get it over the counter in Greece and Cyprus for very much much less. Someone is ripping off the NHS and we should all be writing to our MPs and the health secretary. This is a national scandal.

  • Thanks for all the replies. You've given me some good advice and stuff to look into.

    I take 60mcg of Liothyronine daily, which is a dose I've been on for years give and take a few months during my my 3 pregnancies.

    The go told me this over a phone appointment and has asked me to go in and see him in a month so he's got time to look into an alternative. I'll take my husband with me but I'm trying to get as much info before I go. The gp made it quite clear it's purely about the cost of it, he said it several times but I doubt very much he'd ever put it writing. I also know I'm not the only patient from that surgery on Liothyronine, I know of another lady who is on it and also Armour which is really expensive. Unfortunately I don't know who she is, I spoke to her in passing one day.

    I totally understand the NHS needs to save money, if there was an equivalent alternative that was cheaper then I'd be all for it, what concerns me is that he's going to try and increase the thyroxine and stop the Liothyronine.

    I've got 3 young children (5,4 and 2) and my 4 year old has Down's Syndrome so I'm really worried it's going to affect them if I'm not being medicated properly. Life is exhausting enough already with hospital appointments, school runs, therapy sessions etc.

    I'll keep you posted on how I get on. Thank you again for the replies.

  • My GP stopped my T3 - just like that, no warning! Luckily I managed to source some from abroad, thanks to this site.

    His reasons...my dose of T3 causes heart problems and it is too dangerous for me to continue; in his view it is better for me to be hypo and get a bit fat and tired. I have been taking 120mcg T3 for several years and been well and happy. (No heart problems, no bone loss, no fat...)

    I have yet to reply but have made a draft - it may need editing as it is rather angry.

  • Hya where online can I buy this liothyronine? ? I'm on 75mg of levy thyroxine but my hairs still falling out ,constipated,very tired,ache and put on weight in short time ,so I feel I need more t3,,can anyone please advise me as my doctor seems to blame it on stress stress stress :( and now it's come to me having to feel like I need to turn to steroids to get t3 to try and have a normal sort of life x

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