We all need a to get our heads around a standardised method for challenging CCG's , GP's and Endos...and winning!
Then we all need to do it.
I am challenging it, read my posts for info and links to papers.
GPs or endos can prescribe it if you need it, you just need to go about it in the right way.
They cannot say no because of cost or simply because CCG has told them they can't prescribe it.
The CCG issues guidance which it expects Gps and endos to comply with BUT IT IS GUIDANCE. GPs can prescribe anything even unlicenced drugs,
Constantly just going and buying online lets them off the hook and will leave you OUT IN THE COLD for any other NHS help for the rest of your life. "You are self medicating....what do you expect ...yady yah
How are you gonna manage to buy it when you retire?
What about future generations? Poor conversion runs in families, have you got grandchildren, sisters etc?
It is not just about STILL getting it if you are prescribed now but future people being allowed to try the t4/t3 route.
what I suggest from my research will have best chance of success and what i'm doing
1) find your local CCG online, search 'traffic light' to find their particular classification of t3 ( 'red drug' or 'red drug and not recommended' ) It seems to vary between CCgs
if RED drug - then pursue shared care agreement between consulatnt and GP
'If Red drug and not recommended' get consulatnt to put in Individual funding application
I will let you know how we get on.
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juliat
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Actually if you read it carefully the 2015 BTA paper gives ample scope to treat tHose few patients who need a mix of T4/T3 especially section 12 last page.
yes i realise that. I made the point that they have , if they choose or have the b***s to use it, the automony and the power. as we all know T3 is a licenced drug.
You say ' We all need a to get our heads around a standardised method for challenging CCG's , GP's and Endos...and winning!'
I am not a defeatist. I am not a weak woman weeping in the consulting room of my GP as he sneers and postures yet again. My condition has made me thus and I would rather go abroad ( just back from Halkidiki ) and get a 2 years a time supply of T3 for less than 40 quid, check my own bloods for another ton and follow some wise generous and insightful people here on TUK than waste what effort, energy, smarts and time I have challenging these intransigent feckwits any further.
I am utterly dismayed at the situation I find myself in but I would rather spend the aforementioned on my darling husband, fabulous children, delicious grandchildren, fistful of friends and, amazingly, repeat clients who remain. If I were not freelance I couldn't cope. Many blessings to those who are trying to hold down a conventional job who have thyroid issues.
Managing one condition does not mean your GP or others can abrogate their responsibility to tend to other health concerns you may have. Or try this - just don't tell them you're self medicating. My TSH has gone from 4.5 ( GP: You are in range - so no dose increase is necessary ) to 0.37 whilst my tool of a doctor thinks I'm taking his chosen magic bullet of 75mcg levo, without a murmur.
Feck em all, every last one of the various medical bodies and individuals who leave so many of us as we are. I'll pay my money, which through my own hard graft should enable me to continue my chosen regimen into retirement if I am fortunate enough to get there.
Would that I had your energy to spare, but I need every precious grain of mine and there's nothing left over to fight with, just a little to share here, now and then.
I know where you are coming from, I and my family have been there, lived it and are living it. BUT it doesn't help, does it, that everybody doing this method of self medicating and then not telling docs is compounding their bl***y belief that T4 works for everybody.!!! Sorry, not meant to upset you but that is the case. One of the reasons T3 is so tricky IS THE LACK OF LONG TERM DATA ON PATIENTS ON IT proving its saftey if use correctly. ! "You will get cardio and bone probs etc etc.." . will i?? ask where is the data? There is none I can find.
There will never be any if we don't stand up and win.
AT LEAST TELL YOUR GP AND INSIST HE ADDS TO YOUR NOTES.
I'm just about to start on NDT (when it arrives!) and will therefore not be taking my 125mg of Levo. If I'm not asking for and collecting prescriptions won't this flag up to the doctor that I'm not taking it? How do you get round that? x
Perhaps you could collect Levothyroxine for 2-3 months until you are sure NDT is working for you. It would make sense to have some Levothyroxine by you in case of difficulty sourcing NDT. Your GP can't insist you take Levothyroxine if you prefer NDT.
matty220 I hear you. I've come late to address your concerns, for which apologies. Clutter ,one of our excellent admin team, has given some as is usual fab advice. To your question.
I live in a sprawling metropolis for my sins. I collect my script as I do fulfill the hypertension medication and anti depressants I am also prescribed. ( And for those who might suggest I can do without the ADs, trust me, I have tried. I end up a ratty vile old hag who doesn't deserve to live among the super decent people she shares her life with and it's a price I'll happily pay for the comfort and well being of those I love. ) But I digress.
I have my script fulfilled at a local Asda, frequented a good deal. The pharmacists and team are pretty wonderful and when I went for the first time, having garnered a supply of levo for extreme emergencies, to ask for a pick and mix fulfillment ( I want those and those but not those, thank you ) the pharmacist took me to one side to tell me I'd be very unwise to refuse levo. I told her I was self medicating with NDT and checking my own bloods and have since told her I've added T3. We spoke of the increased dangers of my high blood pressure bubbling over and I bought a BP monitor that stores my daily readings lest my tool of a GP ever wakes up...all is well. I am coming up on six years older than when I started and my health is not 100% but I must factor in the advancing decrepitude, additional to my thyroid condition. I can keep b*ggering on and rejoice.
One of our fellow posters on this forum has spoken of her unease at getting a prescription fulfilled which she doesn't use. This is my way around it for the moment. I can't add to Clutter's wise words, only wish you well and give you a cuddle. I felt almost immediately better on NDT - my hope is that you do, too.
Thank you for that Rapunzel. I'm hoping I'll get an immediate response from the NDT as well. I've felt so bad for so long I can't remember what OK feels like. I know I'm 66 but lots of my friends are too and they can still do the 8 mile walks up the Peak District hills I'm surrounded by! I used to be able to and, in fact, it's only just over 11 years since I did the Yorkshire 3 peaks walk which is 25 miles in under 12 hours, which I did with relative ease!
I'm going to see my son in Japan at the beginning of July so I'm hoping for an improvement before then, there'll be lots of sightseeing in temperatures of about 30 so I'm told, with very high humidity - argh!
What NDT did/do you take? I've ordered thyroid S from Thailand as I can't afford the American / Canadian ones. I hope it doesn't take an age to come x
At the point where I started on NDT I still held the view that I might bring my GP into my confidence and I wanted an NDT that would meet UK pharmaceutical requirements.
Unfortunately Thyroid S isn't one of those, but I do read of many here who do well on it. I started off on NP Thyroid and have recently swapped for Nature Throid without issue, the latter being cheaper. Unfortunately NP is going the way of Armour - getting very expensive. The post office underestimated my fee on 200 tabs by some margin - hurrah !
Did my traveling when I was young, although I never got to Japan - a long held plan - like Petra, it will just have to wait for another lifetime...What a wonderful opportunity. Have a great time and remember that you can usually dive into a shop or hotel lobby if the heat gets too much - leastways that's what I did in Hong Kong x
Thanks, and I might pick up some methyl cobalamin while I'm there. I understand they're quite keen on high B12. Mine was 284. But thanks to 3 months on Jarrow it's 1600 yey!!
Hi .... My GP has applied for individual funding that has been refused by Somerset CCG, on the grounds of "not proving exceptionality" we have since re submitted our application with added weight and have yet to have a hearing. My GP is still prescribing from the surgerys own budget. But this will stop if my current application gets refused. As in my gps words " the surgery cannot afford to take this financial hit on a long term basis"
I agree with you in principle but you first have to find an NHS endo who wil prescribe t3, then the GP who will agree to breach national guidelines before you start all whilst feeling rubbishy on just levothyroxine. So the choice feel crap, fail to hold down a job, keep a life and become a victim or choose to self medicate reclaim your life and then at least have the energy to continue the fight. I applaud your quest and support you 100% but sometimes you have to be a realist before you can become an idealist.
Well done and thank-you. It is so easy to just import L-T3 and not bother - in the short term. The problem is that the manufacturers are not stupid, those that are will be bought out. There is an enormous fortune to be made if L-T3 is not available on prescription. With no government interest (no longer prescribed) the manufacturers can harmonize the price worldwide. This has already happened with Cytomel and UK liothyronine.
When L-T3 costs £10 or £20 a tablet, everywhere, who is going to self medicate? A touch of realism is required.
My brother lives in Devon and he was on t3 for about 5 years then 2 years ago his dr reduced his t3 and added in some t4. Six months later he stopped all t3 and increased the t4 never gave an explanation and effectively got my brother off t3 without him even questioning it. Bro was initially put on t3 due to migraines and diarrhoea on t4. But they are basically under medicating him on t4 to keep him symptom free. So that they no longer need to perscribe him t3. That is criminal in my eyes. I am so scared for my brother health but he just puts his exhaustion on working long hours. And to be honest until I joined this forum I never questioned my GP advice I never got blood printed if they told me my bloods were fine I never questioned it, I don't think bro has had his levels checked in 18 months definitely not since being on Levo only....... It is a pure disgrace it really is......
Because the sole supplier changed it from a branded to a generic medicine - which side-stepped price controls which do not apply to generic medicines. (The logic is that if it is generic, another company will compete. That is not working here.)
And no other company has applied for a product licence.
My guess is that companies see it as a niche market and unlikely to be worth entering. But other thoughts have crossed my mind. For example, MercuryPharma might want to get out of the market (too much trouble for the profit). Escalating the price very high should make it appealing for another company (e.g. Pfizer with Cytomel) to start selling here. Whereas the old £12 or so a pack was not appealing, there is tons of room to both make a huge profit and undercut the price now established by MercuryPharma.
I think I was very lucky, both to be diagnosed with an underactive thyroid, and subsequently, seeing an endo who immediately prescribed t3.
Before I moved house (from London to West Midlands), the practice nurse who had been discussing my levels, told me to make sure I saw an endo if I still felt tired after moving. At first my new doctor said the endo would be no help, as my bloods were 'normal', but I calmly repeated that I still wanted to be referred please (probably repeated this twice before he reluctantly said okay).
The endo was great at explaining where in the range I needed to be to feel okay, but increasing iron, b12 etc didn't hold any water with him. My bloods ended up in good range, but I still felt tired. He discharged me with advice to 'experiement with supplementations - and even medication - but to get bloods checked to make sure I wasn't going too high).
When I explained this to the GP, he didn't think there was any reason to do blood tests, as if I took too much, my body would just get rid of it. I still insisted, and got a load done - then asked for a prescription for iron (bottom of range) as I couldn't find any high doses online. I need to ask for more now, and feel I need a bit of courage to do this - shouldn't be like this, should it?!
I am supplementing all the vitamins possible (carefully), adding more as I find out - most recent is magnesium (which I've just ran out of and I'm feeling tired again - online shop again tonight).
IGNORE MY COMMENTS .......WHICH ARE WRONG BUT KEEP READING THROUGH MY POSTS.
ignore 1) find your local CCG online, search 'traffic light' to find their particular classification of t3 ( 'red drug' or 'red drug and not recommended' ) It seems to vary between CCgs
ignore if RED drug - then pursue shared care agreement between consulatnt and GP
iGNORE 'If Red drug and not recommended' get consulatnt to put in Individual funding application
I can't remember now which it was, in fact I can't remember there being lots of different ones. Just look for the 5000mcg (if you're really low on B12) and definitely get a sublingual one.
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