Advice regarding responding to GP who will not prescribe 'unlicensed' NDT's

Hi all

I would be grateful for some advice to those who may have been there and done it regarding responding to a GP who will not consider prescribing NDT's as they are unlicensed. I hesitated initially regarding whether I should write them back or not but I have decided to pursue this. Whilst I have to resign myself to the fact that my doctors are not going to help me in this way, i would be grateful if I could direct them to an article to show that other doctors in the UK can and do prescribe and to also give them some current, definitive information on NDT's as they also stated in their response that this should be administered by a specialist who understands thyroid issues which they state they are not.

They have asked to be kept abreast of anything that is discussed from any consultations I have with the specialist which is fine. I in turn have asked that if they cannot support me with regards to administering NDT's can they at least enable me to have my bloods tested regularly so that I monitor how my body is responding to medication - do you think this is reasonable? Also, which tests should I try and get done i.e. standard TSH tests, what else? Finally, I have asked if they have any tests pre 5 years ago (when I was 100% so that I can look at the results to give me an idea of what works for me - is this a good idea?

Thanks for any help you can give in advance

19 Replies

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  • This link will explain Named Patient prescribing and NDT thyroiduk.org.uk/tuk/treatm...

  • Thanks for the link, some of it will prove useful however, I dont get the named patient bit. Will a GP care to prescribe this if they themselves havent diagnosed the patient OR if they dont understand the condition or how to treat it as mine seem to say?

  • Who diagnoses is largely irrelevant (presuming it's a suitably qualified person) as we all change GPs and Consultants from time to time.

    MRHA.gov.uk:

    'Off-label' or 'unlicensed' prescribing: Sometimes doctors find that a licensed medicine works well for a certain condition, age group, or at a dose for which it has not been licensed by the regulator.

    They prescribe it, based on their own and their colleagues’ experience, published studies, and findings presented at professional meetings. This is called 'off label' prescribing.

    It is more likely to happen when there are either no alternatives, or where access to effective alternatives is restricted.

    Sometimes doctors will also ask the MHRA to import a medicine that has been licensed outside Europe if they think this might help a particular patient, on what is known as a named patient basis or 'unlicensed' use."

    So if a GP can be sufficiently motivated to help their patient, they can research it, read up on other research findings, check with colleagues etc, and then prescribe on the named patient basis. Whilst they aren't qualified in the specialty of Endocronology, they have suffient medical / biological knowledge to interpret and monitor blood results etc, and of course that is nothing they wouldn't be doing on the "gold standard" T4 meds. Monitoring a patient taking any new meds requires the same approach even if the detail is different.

    When individuals "self-harm" through nicotine, alcohol and drug abuse, they are nevertheless still entitled to access appropriate GP care, and testing, so it seems reasonable the same service is afforded to someone wanting to take care of their health.

  • Thank you for this - I approach this with trepidation as I guess there is a part of me still that is a little concerned about pressing for help after they have said no. This does make sense though - lets hope they see it the same way.

  • After the raft of private blood tests that I am having done on Monday, I shall be starting to take NDT rather than my prescribed T3&4, on a go it alone basis. I've not bothered to tell my GP as I already know he won't prescribe NDT, and did a bit of loud la la la-ing when I said it was available on the web. Didn't mention I'd already bought mine ;-)

  • Good for you. It's practically criminal that so many of us are forced to go it alone, but my OH hasn't looked back since she started taking NDT. It's worked brilliantly for her. She's not 100% better but 90% of feeling like her old self is so much better than feeling like death warmed up.

    Hope it works as well, if not even better, for you xx

  • Your too kind LilyMay.

    Am very pleased that your OH is feeling so much better, long may it continue for you both :-) x

  • Page 191 of this PDF tells you how many prescriptions for Armour were issued in 2012:

    hscic.gov.uk/catalogue/PUB1...

    Looks to me as fi there were around 3,300 prescriptions. So, not exactly a huge number, but enough to show that it can indeed be done. This applies to England only- similar statistics are probably available for the other constituent countries.

    Rod

  • I think it is extremely rare for an NHS GP to prescribe NDT. After all the 'powers that be' hounded both Dr Peatfield and Dr Skinner, as well as some others because they prescribed NDT and/or considered the patients' clinical symptoms rather than relying on the TSH.

    In the BTA's guidelines they have made false statements about NDT and despite proof and NDT being used for more than 100 years previous to the introduction of synthetic levo and blood tests have not amended their guidelines.

    GPs are afraid of losing their livelihood.

  • I have just got my repeat prescription for Armour from my GP and it now says 'imported from the US' in brackets after the word Armour. It didn't used to say this.

  • Are you already taking a NDT but on a private prescription and therefore paying for it yourself?

    If so you could try shopping around at other GP surgeries writing to the GP Practice manager outlining your diagnosis, what happens when you are on standard treatment, that other prescriptions needs you have had to take due to symptoms not being resolved -such laxatives, pain killer, blood pressure tablets, emollients etc... and if indeed this is the case you can argue that the cost is cheaper to prescribe the NDT than standard Levothyroxine! Enclose copies of the links and info the others have provided so they know it can be done.

    This worked for me -cost effectiveness argument was key! And remains so...... Good Luck!

  • Would you not consider buying your own and self-monitoring? At least that way you don't have to put up with useless GPs who know nothing about thyroid matters.

  • here here, though could still get the GP to authorise blood tests, if accommodates what needs testing?

  • Hi All

    Yes, I am self medicating. If push comes to shove, I suspect I will end up having to look at other surgeries though it will be sad to do so as I have been at this one all my life (not a reason to stay in light of what i am going through I know).

    cc120, I do want them at least to do bloods - but which ones? That is my question

  • I think this half of your question has probably got lost in this thread now. Unfortunately I'm not qualified to answer it! But there are those who are. I'd put it in a new question and I'm sure you'll soon get the info you need.

  • From various documents I've read - not nonsense - but from research published in reputable journals (outside of the UK), I believe it is free T4 and free T3 that are the best tests to ask for. According to a growing body of recent research TSH is a poor indicator of functional uptake of both T4 and T3 whatever drugs are being prescribed. I read this research via ATHENS which only gives you access if you meet certain employment or study criteria. I no longer meet them and my access has been withdrawn. If you know anybody who works in the NHS or is studying any medical or public health topic, they should be able to access ATHENS.

  • Thank you so much SandraCC for posting this question. It's very timely for me as I am about to start this battle with my GP. I know now for certain that NDT works for me much better than synthetic replacements. Fibromyalgia - what fibromyalgia?

  • You are welcome Whippetlover - I hope you are more successful than I have been. I seem to have alienated my GP and they seem to have got snotty with me for asking for support.

    Good luck to you.

  • Yes, same experience here only just this last week. Got completely stonewalled by my GP when leading the appointment onto the subject of NDT, by asking 'I need your help and support...' yeah right! He firstly asked what my Endo said, citing he has insufficient knowledge on the subject as a whole (fair enough), but once I tried to help him by giving him literature I had prepared for him (a few relevant information/print-outs and two links) he suddenly got quite red-faced/heated, pushed the papers back to me without even looking at so much as the heading and firmly denied his support on following me on my NDT journey or even prescribe it, saying that 'doctors have been accused of attempted manslaughter and his hands are tied' and 'he would not even consider 'putting his stamp on anything I come up with'....End of. I assume by persisting and showing I had done my homework and wanting to share it with him by providing literature on the subject, I made it even more difficult for him to wiggle his way out easily by simply 'playing dumb'. So my quest continues...

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