Newcomer to UK and need to renew dessicated thyroid prescription; please help!

I recently moved to the UK (Oxfordshire) from Canada and am running low on my prescription of NDT. I went to the GP that my school assigned to me and she has been very unhelpful. I brought copies of previous blood work and the bottle of my prescription (ERFA Thyroid) to show her as well as a few information sheets in case she didn't know much about it. I also did a bit of research and realized it is very difficult to get NDT here, so I found the information about prescribing medications on a "Named Patient" basis on ThyroidUK and gave it to her. I'm not sure if this is true, but she contacted me a few days after my appointment and told me that she cannot legally prescribe any kind of NDT. So I reluctantly agreed to switch from my ERFA (which I'm having no problems with) to the standard levothyroxine medication available here (I was previously on 88mcg of levo, before starting ERFA). At my appointment today I found out that my GP has no idea what she's doing. When doing the conversion, she only factored in the T4 from my ERFA and told me that T3 is negligible when calculating the converted amount, so I now have a prescription for a mere 25mcg of levo! :(

So essentially my questions are: Are there doctors who can prescribe NDT here in the UK? If there are, how can I find them (I'm willing to travel)? If I can't get NDT here, would I be able to book an appointment with a proper endocrinologist so I can at the very least get the closest equivalent of levothyroxine or do I need a referral?

Any advice would be appreciated. I am almost of my ERFA and am scared of what will happen when I start such a low does of levo.

Many thanks.

19 Replies

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  • Any doctor who claims it is illegal is either deluded, ignorant or is interpreting "Won't get past the people who hold the purse strings" as law-breaking. Technically, UK doctors have enormous powers to prescribe - almost anything except for a small blacklist can be prescribed. Of course, an NHS doctor is never going to get away with prescribing a bottle of Scotch whisky! However, in all cases, a doctor prescribing anything that is not licensed is the responsibility of the prescriber in a way that licensed medicines seem not to be.

    Rod

  • This is getting ridiculous, isn't it? I don't take NDT, but more and more doctors appear to be claiming it is illegal to prescribe it. Where on earth is this information coming from? The Society of Endocrinologists? I know the SoE actively discourages the prescribing of anything other than T4.

    NDT is not illegal. It is not illegal to prescribe it. As far as I'm aware (and it would be worth double checking this) it is not a "licensed" medicine as it was in use before licencing was brought in. I believe the phrase used is that it was "grandfathered in" and doesn't require a licence.

    Symon - I'm sending you a PM.

  • I believe that if any company wished to supply desiccated thyroid medicine in the UK (other than under the provisions of the so-called "named patient basis") they would have to apply for a license.

    Aside from anything else, there has not been such a product available for many years. I am convinced that this would attract the same level of scrutiny and license-requirement as any other medicine which has been available for many years in other countries. That is, somewhat easier than a brand-new medicine with no historic safety or efficacy information.

    I have always thought the term "grandfathered" when applied to medicines to have its origins in the USA. Not sure if it was ever really applicable in the UK but I do not have sufficient knowledge to be sure of that.

    You are, however, quite right that desiccated thyroid medicines are absolutely NOT illegal and can legally be prescribed.

    Rod

  • I have copied and pasted the details of the British Thyroid Association's guidelines in the past but I am now unable to do so. Despite Dr Lowe writing a Rebuttal stating that their guidelines contained False Statements, they still have not amended them and roughly they state that there has been significant problems with stability of Armour in recent years which has been recalled and is not recommended. There is also fluctuations in the level of thyroid hormones which may be unpredictable and have adverse affects on the patients' health.There is no evidence to favour Armour over thyroxine. That it is not on the British National Formulary and if doctors prescribe it is on their own direct responsibility. Also it is £20 per month.

  • Symon you'll be lucky to find an NHS GP or endo who will prescribe T3 let alone Erfa. They're T4 fascists here. If you pay privately you'll have a wait and have to dig deep. Why not buy online? I've sent you a link to a site recommended to me. Delivery to UK 14/21 days.

    If your GP is too thick to calculate a conversion do it for her to get the dose of Levo you need to tide you over. 4:1 ratio T4 to T3 for 1 grain (65mg) Erfa.

  • Clutter do you still have that link and could you possibly tell me how i would be able to start medicating myself? My doctors refuse to give me even regular blood tests let alone consider the idea of T3 - instead he wants to give me antidepressants.....i keep telling that SSRIs make hashimotos worse?

  • Addi, post your recent thyroid results and ranges in a new question and say how much Levothyroxine you are taking and members can guide you how to add T3. If your GP won't do regular thyroid tests you can order private tests from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

  • Many clinical commisioning groups here are now trying to outlaw prescribing of any form of ndt on cost grounds

    equally because GPs insurances wont cover them they will not prescribe unlicensed medicines

    crazy thing is its thyroxine which is untesred and unproven and was grandfathered in and has caused massive ill health problems

    see also the you tube skit why does my throid medication not work

  • I live in South Oxfordshire and a friend goes to endocrinology department at the Royal Berks Hospital, where she was recently told that if she had not improved by her next visit, the endo would try Armour. So it is possible to get it but not quickly I fear. Perhaps buy it now and then fight your case with the NHS. Good luck!

  • I think you would be wasting your time with the uk regular medical profession. I would either buy it yourself from a reputable internet site or pay to see doctor gordon skinner in birmingham - but you have to ask your gp for a referral for that. Sorry. K

    Post edited to remove reference to website for obtaining uk prescription only medication without z prescription - please see TUK guidelines

  • Sadly, Dr Skinner died on Tuesday, and will leave a huge gap, both as thyroid doctor and wonderful man. I also buy my Armour online.

    Post edited by Admin (see post above). Please do not post details of where to buy UK prescription medicines without a prescription.

  • Omg how terrible. I had not heard. I thought he might retire but not that. How did you hear?

  • Louise posted on Thyroid Friends.

  • Hi there Symon......just a suggestion that while you try to sort out your prescription of ERFA the nearest dosage you will get here to your 88mcgs Levo is 87.5 which you can achieve by alternating 75( 50+ 25) one day followed by 100 the next.Mercury Pharma is available in all three of these dosages. Hope you get sorted soon.

  • trip to Canada--relative in Canada -- moving back to Canada insane isn't it--to read thyroid books at least 3 that are informative, all say that levo alone doesn't work for almost everyone, so money is leading the medical profession by the nose--they are supposed to have a duty of care...hah -i once suggested we all file a class action suit as our right to enjoyment of life is severely being infringed upon, and their reliance on blood tests ( and mind you they are different in uk and usa ) and not relieving our symptoms is tantamount to malpractice ... or how about petitions taken to the highest med group-i'm sure their are hundreds of thousands of us needlessly suffering--at least they should have a standardization of treatment-as you will see here, some do some don't prescribe what we are after, it's an out-rite guessing game lottery--apparently even endos disagree from different locations why are we not allowed to publish who prescribes what and where??? perhaps we all need to move to Germany....

  • Just a point - if you chose to buy your own NDT, as many of us do, you will not be able to buy ERFA, as it is not avalable without prescription even for export to UK, you will have to change to Armour or another similar NDT

  • Not actually the case. Certainly Erfa is less widely available from sources willing to ship to the UK than Nature-Throid, and Armour, but there most certainly are suppliers.

    Rod

  • I have ERFA on an NHS prescription from my GP but only with my lovely Dr Skinner's covering. I am so sad that he has died, he changed my life and I thought of him as a friend after 11 years of knowing him. My heart goes out to his children.

    I need to know how to purchase ERFA if my GP refuses to continue my prescription. I have no thyroid and an allergic reaction to Levothyroxine. Please could you message me with information about how to buy ERFA privately?

    So many people will miss Gordon Skinner deeply as a physician and a man. He fought hard to have thyroid disease treated properly and he was made to suffer for his beliefs. He was special.

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