I'm likely jumping the gun somewhat but my GP is rubbish and I'm fed up of feeling 'not-quite-better'.
I'm pondering on seeing a private endo but how does that work?
Can I just go see them? If they changed my prescription, even just in terms of a levo increase, would that mean a private prescription and therefore I'd have to pay?
If the endo also does NHS work can I get an NHS prescription from them? Or do I need to be referred by my GP to get an NHS prescription?
On the off chance I was prescribed T3 privately could someone else collect the prescription for me in France?
Any new prescription will be private, but if he just advises a change in levo your GP should oblige
I have gone down this route and quite frankly it was a waste of money as conventional endos are just as bad as GPs if not worse
If you can afford it, see GP (name removed by admin )in Manchester, he's the fella from the TV and fully supports NDT, adrenal treatment etc but expect to pay £100s just for an initial consult, then you'll need to factor private testing and private prescriptions on top of that
Well, this person is a thyroid specialist and is open to prescribing T3 so I'm assuming they're more open minded than my GP and I can book an appointment online to see them.
From what you're saying though, to get an NHS prescription I have to be referred by my GP?
Email Thyroid UK for list of recommend thyroid specialist endocrinologists........NHS and Private
tukadmin@thyroiduk.org
First step is to get levothyroxine dose increased high enough. Often higher than a GP prepared to do.
Trying liquid levothyroxine another option too - also usually only offered via endocrinologist
To see an NHS endocrinologist your GP would have to agree to refer you. It’s difficult (but not impossible) to get referral on NHS out of your own area. Slightly easier if there’s one recommended in your own CCG area
If you do go down NHS route, and if prescribed T3 this is initially prescribed via hospital pharmacy for 3-6 month trial. Assuming successful, endocrinologist writes to your GP to formally request they take take over care and cost of ongoing prescription. (May need an individual funding request agreed to cover cost) Annual review back with endo
Quickest option..... you would pick a recommended endocrinologist who’s private and NHS
Seeing them privately would skip the 9-12 month wait on NHS
Alternatively seeing and endo that’s only private will also skip the waiting time
Usually any endocrinologist will require a letter of introduction/referral (basically background info) from GP. GP can’t refuse a private referral
Seeing an endocrinologist privately doesn’t entitle you to prescription for T3 on NHS.
If you go the private route, then initial trial is self funded.
some members have successfully transferred to NHS having started via private route .....for ongoing care and prescription. How easy or impossible this is, depends to some extent on how dramatic the transformation that T3 brings to life of the patient, some extent on the reputation of the private endocrinologist you see, and some extent the CCG policy on T3 in your area.
Eg Kernow, Devon, Bucks, oxon all open to prescribing.
Others like Brighton, Essex, Somerset extremely anti.
I've got the list - there are a couple I could go to within an hour or so. My preferred choice is NHS and private so that's good. A private prescription isn't sustainable for me so whatever I do it needs to be via NHS.
Unfortunately for me, I fall into the NHS Bath And North East Somerset, Swindon, And Wiltshire CCG.
My next step is an increase in levo, which I think will be a struggle so I'm really just trying to plan ahead in case it's necessary.
Still 4 weeks to go until my next set of bloods. sigh.
As I understand, UK prescriptions will no longer be recognised by the EU countries.
However, I have yet to see definitive guidance on this question.
I have no idea on French rules - do people have to go in person?
Assuming someone could literally pick it up from a French pharmacy for you, they would then be carrying it into the UK for you. I would be concerned that could appear to be regarded as supplying a prescription-only medicine - which is illegal. But it is possible they would be looked at like a postie - just passing on a parcel.
Also, in France, the standard liothyronine is Sanofi Cynomel - which is in 25 microgram tablets. (UK and Thybon Henning are both 20 microgram tablets.) Important for the prescription(s) to be written correctly. Not sure how many tablets in a pack of Sanofi Cynomel!
I am most certainly running before I'm walking here. I'm on a fact finding mission at the moment. Just so utterly fed up of not feeling well and knowing I'll have to gear up for a fight with the GP for an increase in levo.
The idea of throwing money at the problem is rather appealling at the moment.
Yes, I have a feeling that would happen to me. At last check TSH was 2.3 and T4 was 51% thru range and T3 was 37% so on paper I should be well, according to the medical papers! 😒
Mine was about a month with NHS, I think it depends on what it is for though I can't imaging waiting 9-12 even mental health waiting lists are not that bad!
With NHS they don't have to even to accept the referral so from what you are saying your stuff on paper is in range, so in this case it would be best to go private
Just to add my experience. I first saw my endo privately (to get an appointment quickly) but, as he also works in an NHS hospital, he transferred me to his clinic there after the initial appointment. Obviously there was then a much longer wait via the NHS, but that worked OK for me. I was already prescribed T3 so a slightly different situation, but I was lucky that my GP agreed to amend the prescription on his advice. It may be that your GP will agree to prescribe based on what the endo recommends too, especially if it is a change in thyroxine dose. Frustratingly there doesn't seem to be any consistency in how they all work.
I had to be referred to my consultant by my GP, but some private endos do not need a referral. Again, it very much depends who you see. Also, as I'm sure you are aware, going privately doesn't necessarily mean you get a doctor who is any better, so definitely worth researching first. Good luck, and hopefully you will get the treatment you need.
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