Following a year of supplementing (many thanks to the regulars here for their excellent advice over the months) and 3 months of gluten-free, with no noticeable reduction in my hypo symptoms, I'm doing some homework to support my mid-term plan for getting T3 prescribed.
Firstly, I have been recommended to an Endo and I would, ideally, like to see him on the NHS. He works at a hospital 25 miles away, and outside of my own CCG area. I'm fairly confident I can persuade my GP to refer me to an endo, but I anticipate a possible battle getting referred to someone outside of my own CCG area. Am I right to be concerned about this? If I have a battle on my hands, is there anything in the legislation that allows GPs to refuse this? Can I insist on being referred out of my local area - and what is my recourse if I am refused?
Secondly, if I end up not being able to see the endo on the NHS then I would be prepared to pay to see him privately (I know he also works privately). If he is too busy to see me, then I also know of a private GP who suffers from Hashi's (like me) and I would ask them to let me trial T3 to see if it helps me.
I don't mind buying T3 from Germany with a private prescription, and saving the NHS a fortune. But while funds to pay for the T3 would be available, I'd like to avoid having to repeatedly pay a private endo or private GP for a consultation and repeat prescription every 2 months. I would like to think that my NHS GP, after hopefully seeing T3 working for me, would be sympathetic and supportive and would agree to write me repeat prescriptions privately (obviously they wouldn't/couldn't do it on the NHS). I am right in thinking that NHS GPs can write private prescriptions, aren't I? Can they charge me? If the evidence supporting T3 is good, can they refuse to write me a private prescription purely on the grounds that they don't like writing private prescriptions? Would I have any recourse if they refused on such grounds?
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bristolboy
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You have the right to ask for a referral to a secondary care specialist but do not have the right to have that request automatically acceded to. If your GP agrees that a referral is appropriate then you can ask to be referred to your clinic of choice (assuming that it offers endocrinology of course), and are not limited to within your CCG (the cost of treatment is vired back to your own CCG wherever you are seen, so in that regard, it doesn't matter). You can ask to be referred to a Consultant of your choice, but cannot insist that you are seen by that person, only that it is someone within their team - you may see them, but you may not; or you may see them at your first appointment but not at subsequent ones. Re private prescriptions, your NHS GP can write them, and is expressly prohibited from charging for the writing of a prescription. However they are not obligated to write one - their NHS contracts obligates them to deliver NHS services which by definition doesn't include private prescriptions; and in general/professional terms, prescribing is down to the individual Dr's considered opinion about what is necessary, or beneficial, or safe for the patient.
Thanks ever so much MaisieGray - you've covered all the angles (I appreciate there were a lot of "ifs" and "buts" in my question!). I haven't yet decided when to approach my GP - I'll probably wait until I have a another set of Medichecks results in March or April to rely on - but a long career involving many difficult negotiations has taught me to be well briefed before starting. Even more important now that the bl**dy brain fog has caused me to retire!! Thanks again, Nick
You're welcome bristolboy . Yes, I absolutely agree with you about being well prepared, it pays dividends doesn't it; and about the brain fog - I used to reel off legislation, professional regulations, and internal policy documents without hesitation, in my own career, but nowadays can just about remember there are some, lol! Good luck when you meet up with your GP. 🙂
LOL!! I used to MAKE the legislation (not health-related) - but not any more though . Admittedly, my memory was never 100% even before the hypo symptoms kicked in with a vengeance - I wouldn't clutter my brain up trying to remember all the "stuff" - just knowing something existed, and where to look for it, was usually enough. If I ever look back and wonder if I could have done anything better, I just have to look at current UK government policymakers and the shambles they're creating to realise my days truly were the "good old days". Maybe there are even more hypo sufferers than ever before in government today?
Thanks. I've heard good things about the guy I've got in mind. Worst case scenario - I'll have to pay to see him privately initially. Mostly, though, I'm concerned about the ongoing cost (possibly forever?) of getting private prescriptions written every couple of months - which is why I was wondering whether a NHS GP might write private prescriptions (after a Private or NHS Endo had prescribed T3 and it was found to be beneficial and work for me).
One option can be to see the endo you want privately. The plus side being short wait and you get to see them, not a junior. Plus if looking at T3 you can start on 3-6 month trial without having to jump through numerous anti-T3 hoops
If you pick an endo who practices in NHS and privately, you could (with luck) transfer to his NHS list for ongoing care and NHS prescription.
A GP may be reluctant to write a private prescription for German T3. It's not licensed for use in UK, therefore it's likely their insurance doesn't cover them to prescribe unlicensed medication
Thanks SlowDragon. I was thinking the same way as you regarding starting with a private endo who also works for the NHS. However, I'm not sure whether my conscience could handle the NHS paying the exorbitant cost of a T3 prescription for me - hence why I started thinking of buying in Germany with a private prescription. Conscience vs Cost - tricky decision (assuming I ever have to make it!! )
The only caveat I would suggest is that if we leave the EU at the end of March you may not be able to get your prescription filled via a German pharmacist as they are only obliged to fill scripts from GP's who are in EU member countries. So if you are thinking of going down that route it may be expedient to try and get a script and have it dispensed before March 29th.
It costs around €30 for 100 20mcg tablets , you may need to quarter these when you begin taking T3 and build up slowly to a 20mcg dose maybe split into two 10mcg doses. The 100 tabs would last you quite a while and much cheaper than a private script filled at a UK pharmacy ( when I asked just before Christmas the price was £360 for 28 tablets- a total rip off to both private patients and the NHS)
Hi knitwitty, I had wondered about the possible effects of us leaving the EU. Annoyingly, I don't think I'll be in a position to act as quickly as you suggest - so I'll just have to cross my fingers and hope that some form of arrangement is sorted out, or German pharmacies just choose to continue to fill UK scripts because they need our money.
As I said to SlowDragon above, I'd rather give 30 euros to a German pharmacist than have our NHS shell out £360 to Atnahs Pharma UK Ltd, the pharmaceutical company that bought out the rights to T3 and put the price up. Incidentally, Vijay Patel, owner of Atnahs, recently got an OBE in the New Year's Honours List for "philanthropy". It beggars belief - and my MP STILL hasn't replied to my letter about it (probably because there can be no acceptable reason for awarding the OBE!!).
I feel your pain I saw a consultant in December, not the one I was referred to, they weren't in the clinic surprise, surprise. Was told yes I probably need T3 but NHS would not prescribe it. I could pay to see the consultant I should have seen, privately, who would most probably prescribe T3 for me. I could then get it here and pay a small fortune or I could source my own from abroad and they would ( out of the kindness of their hearts- my paraphrasing!!) monitor me.
What is the world coming to?
Still trying to decide what to do for the best.
As you say it may be too late to get some before we leave the EU, if you ask on this forum how to obtain T3 from abroad ( not in an EU country especially) someone will PM you and tell you how to safely obtain it.
One of the pharmacies listed by ThyroidUK on its page regarding private prescriptions, charges only £2.40 per Thybon Henning tablet, which whilst more than the 30€ per hundred charged in Germany, is nevertheless. a lot better than £204 per 28 being paid out by the NHS for UK T3 - it equates to only £67.20 per 28.
Assuming Thybon Henning is as good as UK T3, why doesn't the NHS just licence it in the UK and then buy its T3 from the pharmacy listed by ThyroidUK? Or have I missed something? Maybe the licensing process adds significantly to the cost? Oh no, it can't do, because TH T3 is licensed in Germany and it's still cheap. Could it be that our Government just couldn't care less about thousands of it's people living miserable lives?
I think the manufactureres of Thybon Henning actually have to apply for a UK license themselves in order to officially supply the UK. I doubt they have any good reason to do that, as it would cost them money, and as most of our docs won't prescribe it, we're not going to make it financially worthwhile for them.
Good point. But it's a vicious circle - our docs aren't prescribing it because it's so expensive, but the manufacturers won't apply for a UK license (thereby allowing them to sell it cheaply in the UK) because no-one is prescribing it.
Too true, although this has been going on for years now so if Henning wanted to apply they've had plenty of time to do it. Maybe if everyone in the UK who needs T3 wrote directly to them begging them to get a UK license, they might consider it!
bristolboy a marketing authorisation aka license, has to be applied for, so if the company doesn't do that, there is no license issued. The Govt is involved is regulation, and processing of applications through the MHRA, but not in chivvying up commercial companies to make an application in the first instance: gov.uk/guidance/apply-for-a...
For primary care prescribing, the NHS isn't involved in buying drugs prescribed/dispensed, it merely reimburses each pharmacist retrospectively, for the monies expended in buying their stocks from their wholesalers, and dispensing them against each prescription. Obviously NHS hospitals buy in their drugs for their own inhouse pharmacies and on-ward dispensing, but that is secondary rather than primary care.
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. Admittedly, my memory was never 100% even before the hypo symptoms kicked in with a vengeance - I wouldn't clutter my brain up trying to remember all the "stuff" - just knowing something existed, and where to look for it, was usually enough. If I ever look back and wonder if I could have done anything better, I just have to look at current UK government policymakers and the shambles they're creating to realise my days truly were the "good old days". Maybe there are even more hypo sufferers than ever before in government today? 
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