T3 liothyrononine withdrawal - latest Harmony magazine

[oktoday15112011]

Hi, I have read in the latest Harmony magazine on page 13 an article by Dr Alyssa. She has said "the cessation of prescribing T3 medication within the NHS because it has become too expensive". Does anyone know where this information has come from? I am well on T3 and very frightened at the prospect of its withdrawal. The drug companies are ripping off the NHS (the taxpayer) with their exhorbitant prices. Is anyone campaigning about this?

[T3sortedme]

60mcg (3 tablets) a day on the NHS now costs over £10,000 per annum in the U.K. The result is that it is being withdrawn by practices or health boards on tight budgets. The cost from Germany is £300 per annum, Greece £200 per annum, Finland £300 per annum etc. Only one company in the U.K. has the NHS licence and it is now ripping of the NHS. The company is owned by two guys and they only distribute.

[Pixielula]

You will find a large number of people on this forum whose T3 has already been withdrawn, mine was several months back I am now buying from Greece and medicating myself. Very unhappy about this. My Gp is desperately trying to get me back on Levo. It's a bad situation!!

[shaws Administrator in reply to Pixielula]

If you were unwell on levothyroxine and well on T3, it is disgraceful to try to switch you back to levo.

Never, ever will I take levothyroxine again. I was so very unwell after I began it but you are unaware it is the product. When I was finally diagnosed my TSH was 100 so very unwell at the start and it was as if you were in a nightmare - you definitely would never think that a prescribed medication would make you feel even worse than before. It took a long time and it was thanks to Thyroiduk.org.uk that led my way forward. No turning back for me now. My GP prescribed but haven't taken a T3 prescription for a while due to the NHS supplier having a problem with complaints and running out of T3. Doctor wouldn't prescribe on a named-patient basis (as the onus is on them alone) so to preserve myself I buy my own.

[SlowDragon Administrator]

NHS can prescribe other brands. Some members have managed to keep NHS supply by changing to much cheaper brands - e.g. One from Germany - (called Henning?)

[shaws Administrator in reply to SlowDragon]

Some doctors will not prescribe on a 'named-patient basis' as the onus falls on them completely should the patient have a reaction to 'named-patient' ones.

[marigold22 in reply to SlowDragon]

SlowDragon, do you think a GP would prefer ordering from Germany rather than Cyprus or Greece? I've never taken a German T3, only from Greece & Turkey. I fortunately have not yet been told it can't be prescribed but I'm waiting for it, stressed out......

[SlowDragon Administrator in reply to marigold22]

Sorry, no idea. I can not tolerate taking T3 or NDT. Tried several different options, but all were worse.

Levo only, at correct dose, taken at bedtime suits me best. Plus good levels of vitamins, (magnesium, selenium, B complex and vitamin C) and absolutely, strictly gluten free.

I can't tolerate taking any vitamin D supplements either. (Weird I know)

Sunshine only and regular moderate exercise (walking, yoga) helps.

[moyramm]

Cumbria Advisory Thyroid Service are running a petition about the T3 withdrawal

[marigold22]

I'm well on T3 only. I posted this on here

healthunlocked.com/thyroidu...

and I do intend to write to Competition and Markets Authority (Government run). The more people who write to them complaining, the better. They have a form on their website for complaints.

[Silver_Fairy]

I think this is the link to the above complaints form

gov.uk/government/publicati...

[blondpalomino]

I expect your doctor will have a word with you sooner or later about trying to get you to come off it.It seems most Health Trusts are trying to take it away due to cost.

I am currently trialling just thyroxine as my Doctor asked me to, I don't think it will work as I have no thyroid so need T3 as well,but I need to prove to her that I am unwell without it,then hopefully she can justify giving it to me.

It's a sorry state of affairs when we have to make ourselves ill before they will hopefully agree to keep prescribing it.

[Musicmonkey in reply to blondpalomino]

I wish there was a dislike button! It is an outrageous situation.

[heathermr]

I take T3 only as I have chronic hypothyroidism caused by pituitary failure. At the moment I have still been receiving my T3 on prescription but have found that the UK T3 is poor quality and is not working for me and I am very aware about recent threats of withdrawal. I have eventually pestered my GP into changing my prescription to Cytomel (American version of the same drug) and have found an importer who will bring it into the country for me legally on an NHS prescription. Its been hard work persuading everybody that I want to try this type of T3, apart from the fact that it is just over £600 cheaper per 100 tablets. As I don't pay for my prescriptions, this wont have any monetary gain for me, but I hope the quality of the medication will be significantly better and the NHS charges will be a fraction of that of the British T3. I am hoping when Derbyshire gets around to thinking about banning T3 that they will view my efforts favourably and not stop the drug as I can't live without it.

I have almost had to swear an oath that I know that Cytomel is not licenced in this country but surely if its good enough for America, it should be ok. Having tried Cynomel from Mexico and found that excellent, my fingers are crossed awaiting my first prescription.

Heather

[Musicmonkey in reply to heathermr]

This sounds like an excellent solution and perhaps those of us who need T3 can persuade our GPs?

[Hidden in reply to heathermr]

Wow, well done heathermr getting agreement for American Cytomel on the NHS. That was the first T3 I ever tried and as you say, it's much better than the default NHS version. Really annoying that Grossman Cynomel stopped being produced, as I also got on well with that.

[Twitchen]

I find it disgusting that the NHS are being so ripped off. Why on earth can't their buyers just source liothyronine from Germany, Norway, Finland or Greece? My OH has had eyedrops for glaucoma on NHS prescription that were made in Bulgaria and other places.

I am going to offer cutting down to 10mcg T3 per day and up the T4 by 25mcg and see how I feel on that dose. At least the T3 would last twice as long.

I have to say that I feel really guilty that the cost of T3 is now £258.16 per month and the T4 is about £1.85 per month - it is totally criminal.

[Clutter in reply to Twitchen]

Twitchen,

Why should you feel guilty about the cost of T3? It is Concordia which is ripping off the NHS, not you and I. I certainly don't intend offering to reduce the amount of T3 I take. There should be protocols in place to stop companies ripping off the NHS.

[blondpalomino in reply to Clutter]

Hi Twitchen,

I have agreed to trial Levothyroxine only as my doctor has asked me to,and at the moment she is sympathetic and I need to keep her onside.I thought if I refused, she may say that it is being withdrawn anyway,as it has been in other areas of the country.Another doctor on the same practice (I had to see him as my doctor was away) told me he does not have any patients on it now and he is not prescribing it.I said what if you are unwell without it, and he just shrugged his shoulders!

I can't see it working with just the Levo,I am already not well and have another 5 weeks to go before the blood test,which will hopefully prove the point. I will then say I will try just to have 10mcg a day instead of 20, then if that doesn't work then I hope she will continue to give it to me as I have tried to do without it and it has proved that I really do need it.

If not then I will need to find it elsewhere!

[marigold22 in reply to blondpalomino]

A word of warning - I had to go back onto T4 after a few years of T3 only. A Prof of Endo insisted I went back onto T4; he said the same old .... no benefits of T3, despite my insistence T3 made me well. Then I couldn't work and then I lost my house. I sit here now in my expensive rented house thinking back to what I should have done. Hindsight. So please be careful and buy T3 if you feel you need to. x

[blondpalomino in reply to marigold22]

Thanks marigold22,

I was on partly T4 (75mcg) and 20mcg T3.I am working on getting it on the NHS hopefully, but if my Doctor says she can no longer prescribe it,then I will have to buy it, as the T4 is just no good on it's own. I have to make myself ill for a couple of months before I can get a blood test!

[arTistapple in reply to marigold22]

This is an old post but just in case you check, I am so angry on your behalf. I do hope that somewhere along the line you have this sorted out. I know it’s been said so many times but this is criminal behaviour somewhere along the line OR maybe even in more places than one. Just to emphasise I hope you have come good!

[helvella Administrator Thyroid UK in reply to arTistapple]

marigold22 has posted much more recently than that!

healthunlocked.com/user/mar...