Obtaining Liothyronine (L-T3)

[jimh111]

A number of patients post about obtaining liothyronine because they can't get it on the NHS. Whilst it can be obtained over the internet we can't give details on the forum. It is worth noting however that if you can get your doctor to write an NHS prescription for liothyronine 20 mcg you can obtain it at a reasonable cost from German pharmacies, see thyroiduk.org.uk/tuk/treatm... . It probably helps if you can get your doctor to prescibe 50 or 100 tablets to match the pack size. I have tried Thybon Henning and find it superior to the UK versions.

I think there are a number of advantages of using this route. Your doctor is aware of your need and you get prescriptions written which are on your medical records, confirming your need for liothyroine. Whilst you can obtain liothyronine without prescription I'm always a bit wary that the pharmacies involved may not be so well regulated and you can't be sure the tablets have been stored correctly etc. They may be fine but I have more trust in German efficiency and regulation.

Might I suggest if your doctor is refusing to prescribe and cost issues are involved you ask them to give you an NHS prescription which you will use to order German liothyronine at your own cost (about £28 / 100 tablets incl postage). I think this means the patient gets better medicine and the need for liothyronine stays visible. If the CCGs are forced to change their policy and you are already receiving NHS prescriptions it will be easy to just present them to a local pharmacist thus avoiding any future inertia from doctors.

[diogenes Remembering]

One has to read these posts with some despair about the morality of the NHS. It's first recognised that thyroid failure is a chronic lifelong disease and therefore medical treatment is free. But only if you take thyroxine. If for any reason triiodothyronine is needed as well or instead, the NHS rules no longer apply or do so purely at random. And such patients are uncommon but not rare. Several highly expensive cancer drugs can be used free for a much smaller number of patients than those who require T3. Indeed several hundred patients requiring T3 could be treated for the same cost as the very few on cancer treatment, such treatments often not curing but only prolonging reasonable QoL for a few more months. I think the ethical dilemma between prolonging QoL for the few over a short time versus giving good continuing QoL for many more over the remainder of their lifetimes has not been properly addressed by the NHS and indeed they have their priorities completely wrong. Cost/benefit seems to have been distorted enormously in choosing between the necessary dilemmas of who to treat and how.

[jimh111 in reply to diogenes]

I very much agree. I have been hounding my MP and various NHS bodies for some time. I think my GP rapidly agreed to continue prescribing because he was aware I would have enjoyed taking on my local CCG. Many patients are not in such a healthy position to take on the battle. It's completely against NHS principles for patients to be asked to pay for medicines, especially when the high price is the fault of NHS endocrinologists and procurement who were too lazy to kick up a fuss. The BTA were happy to turn a blind eye to the price increases whilst their sister organisation the BTF were getting funding from Concordia / AMCo. It's a disgraceful mess but for now I think the best patients can do is accept the need to buy German liothyronine if it enables their prescriptions to stay on the books. I've just sent a message to Prof Chatterjee who as BTA president is seeking to get the CCGs to honor prescriptions, I will send you a copy by e-mail as I don't want to put it in the public domain.

[Kipsy]

A great post Jim, but what are we to do when we leave the EU and the German pharmacies no longer recognise prescriptions from outside the EU. I obtain T3 from Germany at present but worry about finding a reliable source after March 2019.

[jimh111 in reply to Kipsy]

I'm ignoring that problem for now! We need to focus on getting good quality UK liothyronine at the right price. The politicians are happy to pay lip service and just go through processes, they have no desire to achieve results. NHS England are even worse passing the problem to patients, a shameful act of cowardice.

[helvella]

The suggestion: an NHS prescription which you will use to order German liothyronine at your own cost has a problem. As soon as an NHS prescription is issued, it could be used at a UK pharmacy and end up being very expensive to the NHS.

Given the cost-averse CCGs, I can see many GPs being unwilling to write one.

Possibly a private prescription, and I think that should be done for no charge by an NHS GP in these circumstances, would be a better bet?

[jimh111]

I guess it depends on whether your GP trusts you. I'd suggest an NHS prescription to the GP pointing out that you will use it for Thybon Henning at your own cost - because it saves the NHS a fortune and is better quality. If they are reluctant you can ask for a private prescription.

Forgot to mention the prescription should be well written with the number of tablets and daily dose written on it, not a scrappy bit of paper.

If we can keep it on NHS prescriptions it will affirm our need for liothyronine on the NHS, otherwise a private prescription will do the trick.