Thyroid UK
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Leicester City CCg has reversed its t3 ban for my prescriptions

For anyone in Leicester area who has had t3 stopped, i have email from CCG this morning reinstating mine on NHS so it is worth keeping on at ccg's.

Luckily I have been able to source mine privately since March last year when they said they would no longer fund it. Hopefully they will all follow suit and do as our endos advise. x

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Endomad,

That's good news. What did you have to do to get them to change their mind?

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I sent a few stern letters to them, cc'ing in the whole world and his dog, my MP is shadow health secretary and got really involved, after nhs england consultation i again wrote pointing out their accountants had no medical training and were in fact in breach of thyroid protocols the BTA had laid out.

I made it very clear that any decline in my health was now a legal issue and entirely their responsibility and i wouldnt hesitate to take them to court and the BMA. My endo had written twice saying i didnt convert and t3 only was in his professional opinion the only option.

After nhs england chap phoned me he also called my ccg to say legally they couldnt just stop my t3 because of the cost. It has taken 10 months and i have got seriously shitty with them. I am lucky enough to have found ways round the stupidity but thats not the point. I have paid tax and NI for 40 years and been exceptionally fit & strong till they whipped my thyroid out....boils my piss tbh rant over x

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I will be sending them an invoice for the cost of my t3 and the ferry fare to france for last 10 months! 124 euros for cynomel, 4 x £15 for private prescriptions from nhs endo and £400 ferry travel...its still cheaper than the £8000.00 it will cost a year with them buying from concordia!

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Endomad,

Good luck with that! Let us know what their response is.

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Endomad,

Good that your endo and MP were supportive and I'm impressed at your tenacity. I think many members just give up and source their own. I hope more will fight back.

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if im honest it had become sport for me to keep annoying them. I agree self sourcing is far less stressful and as i still had a supply i was ok. My only problem with self sourcing is it not being on peoples medical records, if it isnt on there and you have a hospital stay they will not let you have it, if you are abroad and something happens and you are found to self medicate your insurance becomes void. A lovely lady in another group was taken into hospital, they refused her self treatment and she had a serious stroke as a result.

The reason i put the post up was to show it can be done, leicester was one of the first areas to ban t3 and they had no intention of bending to pressure but they have. My endo is under a different ccg and it has been agreed that the hospital get reimbursed by my ccg.

My other reason is i believe everyone will have more success doing it on their own. Sitting back and waiting for a group to do it for them is never going to happen. Put the cost of thousands of people seeking t3 to ccg's and they will say no, individually we are small beans and more likely to succeed. x

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That's not entirely true when it comes to hospital and self medicating.

I'm self medicating (three various medications) and my GP isn't informed.

When I had two operations last few years and they asked what are you taking, I told them honestly as it needs to be taken into account when you have general anaesthetic or other meds given. They didn't even blink.

Had my two opps. All good.

Hospital doesn't care what you take (and believe me people take much worse "recreational" stuff) as long as it won't interfere with the meds they're going to use during your stay/op

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lol yes thats true but no one wants recreational drugs on their medical records :)

Are you self sourced meds on your medical notes at all? i know some buddies have them listed as self sourced.

Your hospital obviously has a common sense factor not all of them do. I know many who have been refused anything not listed on their medical file including my old mum xx

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No, none of my self soured meds are on my surgery notes.

I stopped trusting bstrds while ago. Had a GP using all sorts of dirty tactics on me for knowing I self medicate and self dose, including Levo prescription withdrawal.

So, no I'm clever and clued up enough to use self sources meds without GPs input or knowledge or lack of it.

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deff lack of knowledge with gp's i have been fit all my life. They whipped my thyroid out saying i would feel better right away but forgot to tell me i would need to take thyroid replacement, my dr forgot it had been removed and kept saying it worked fine. Tbh i am stunned at just how little they get away with knowing and have no shame about it, even consultants just coast by knowing naff all, i took my first endo to the ombudsman. I am a water engineer and if i was that useless i would have been sued and bankrupt.

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Hey I'm going to take you up on that offer of fighting with ccg.

No, I know you didn't offer. 😉 only joking.

I just got my dio2 results back and may need your help on fighting to have t3 reinstated in my area - Dorset.

I'm gonna follow you, if you don't mind and may ask you for some pointers in the near future, if they won't treat letter I'm writing now seriously.

Thanks upfront

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You are quite right in saying even some consultants (and nearly all GPs) actually know so little. They are just intelligent enough to pass their exams but it requires another kind of intelligence to think beyong the box - yes I have been lucky to know 2 such consultants, so it's rare - but the majority are pretty useless, lacking knowledge and totally unable to find out what the root cause of problems are, frankly they can't be bothered BUT they are never sacked. It's truly appalling teyt are still paid fat salaries whether they are any good or not. NO other profession would get away with being so incompetent. It is high time the medical profession was reformed, they've had an absolute protection from the beginning and such power for much too long and are delusional as to their own importance, expecting patients to believe they are gods... It's time patients stop believing that and tell them we had enough of being fobbed off and our health being neglected. Patients need to be really pro-active and refuse to accept such appalling mediocrity. If they were regularly inspected by an independent professional body, similar to OFSTED for schools, there would not be many doctors left to practise. They would have to change their way or lose their fat salaries and all the status they are getting simply for having the title of doctor of medecine bestowed on them once they finish their studies!

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Well done even though you were left stranded by the NHS. It will be a huge relief for you.

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So pleased for you. Fingers crossed for everyone else on T3. 👍

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If not done so already.........Can you let Improve Thyroid Treatment campaign on Facebook know. They are compiling list of CCG's and policies on T3

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Endomad, CONGRATULATIONS! It just shows that it take someone who has the courage, gumption and persistence as well as not being prepared to accept that the "medical professionals" and the CCG personel are all mighty, challenging and fighting them into understanding that patieents will not accept to be fobbed off anymore. So pleased for you. I doubt they will reimburse your expenses but good luck in trying.

However, is the T3 provided on NHS as reliable and as good as the type you are taking now? I have seen many posts saying it was not working that well, full of nasty fillers. Please let us know what you think. Wonderful. Well done.

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you are absolutely right the french cynomel for me is much better and each pack has at least 2 years before expiry date, unlike nhs t3 which has often expired before my 3 month prescription has finished. Not only are the NHS paying 8500% more for t3 than in europe, it is old stock they are being dumped with. Any hormone loses potency past a certain time and you would think the purchasing dept would at least insist on new stock for that price! I will continue to take french cynomel, i will bring my prescription here to fill.

Part of my complaint was that it should be prescribed and on my medical records. When nhs stopped funding it, my endo gave me private prescription but it does not go on my general medical notes, just the hospital notes.

Lol i have asked for my expenses to be reimbursed just to be a nuisance but am prepared to keep pushing it on principle :)

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The NHS waste so much money in employing useless people who are incompetent and unable to do a proper job, for the most part of the time. It is absolutely shameful that the people in charge of buying medicine just accept to pay through the nose, even when the medicine is close to be out of date.... What's wrong with them? Are they THAT stupid! Just doing a cushy little job, as in the good old days, nothing must change. The whole service needs a good shake up in order to become more efficient and more helpful.

Lucky you have Cynomel; personally I would touch the NHS T3 with a barge pole... after reading so many negative accounts.

Do hope you get reimbursed.... and well done again. We need more people like you so that a change can be made. It's no good such moaning about something, one has to be really pro-active in order for things to change.

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Think I might just move to Leicester! 😂

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lol worst endocrinology dept in uk so i go to coventry hospital for my endo :) if leicester ccg can make an exception so can other areas, you just need to be prepared for a long slog xx

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I wish I had the energy 😞

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I understand, we all do lack energy, we are in the same boat. Just do it in small steps ... we all need to show them we won't be push around like idiots. Best wishes.

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I’ve enough battles living day to day with poor coping mechanisms to stress anxiety being off sick from work and a single parent. I’m avoiding stress to help myself. Yes I wish I could even take small steps but atm for my own health and well being I’d rather buy it abroad and manage.

Eventually all CCG’s I believe will come round it’s just a waiting game! Sad but true

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I agree the stress is just awful and has such a negative effect. I was lucky and had a way round the ban and a reliable source in france with a private prescription. I have always said self sourcing is by far the easiest way. Its also why i wont get involved in all the campaigning i need my energy to take care of me and to do things that make me happy.

If leicester can change decisions set in stone then so can other areas xx

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It is so difficult coping with such ill health, working and being a single parent. I understand your position. It's good you can get it from abroad and hope you will improve your wellbeing soon. It's such a struggle! Good point about the CCGs ridiculous stance... Take care.

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Thank you!

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Hi,

I agree that the endocrinology dept is rubbish in Leicester. I pushed for a referral in Nuneaton and got T3 prescribed many years ago but today have been told i can no longer have as my pharmacist cannot source anymore. I am on the Thyroid register ,complete waste of time as they asked me what dose i would like to take the last blood test i had.

My G P is supposed to be phoning tomorrow to discuss my options. I will be asking for another referral to Nuneaton or Coventry. Why is there always a battle to get the medication we need ?

Drives me crazy,

Nicola

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Simply because they are incompetent and have a huge ego, they are "doctors", you know! What a sad joke... They cannot cope with being challenged by intelligent, educated and very aware patients who are NOT in awe of them! A useless consultant wrote in a letter to a GP I was "so articulate".... YES.... not used to someone telling him he does not understand the whole picture obviously... and still living in Victorian times where doctors were thought of highly.... NOT anymore.

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I've just had that dreaded phone call. Been on T3 for 15 years following a thyroidectomy to treat cancer. I have got hold of Thyroid UK joint campaign which backs up what you've said about the NHS England guidelines. Sadly my MP is as thick as sludge and has just overseen the closure of our hospital but I will be writing to her along with the papers and anyone else prepared to listen. Thanks for some good news

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The impression I got from my CCG is only those who fight for it will keep it, most wont so they are able to slash their costs by prob 9 out of 10 t3 patients. Be the 1 out of 10 who fights and keeps it x

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