Appeal to CCG

Hi everyone

I have posted on here recently about my GP refusing to prescribe T3 which has been advised by my NHS endocrinologist. He said he would put it to the CCG and now they have refused based on cost and safety.

I am going to appeal but I want to make sure I include all the correct information, research, supporting evidence etc. I have written the bulk of the appeal but would now like to pick all your brains for anything I may have forgotten.

Many thanks

32 Replies

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  • You may find it easier to just change doctors, or buy your T3 over the internet and have private blood tests. True, that's what docs are supposed to take care of - but with thyroid problems it is pretty much DIY. At some point their education will catch up with reality and then they will become useful again.

    But more power to you for fighting the system, I hope you win and make the powers that be, think.

  • I already am self medicating, private blood tests etc after seeing Dr P but Im fed up doing it on my own especially when I had a strange result one time and it scared me.

    I had always wanted to talk to my GP about it and he basically switched off as soon as I did. In the end I asked him to refer me to an endocrinologist, a named one, and he agreed. Probably to get me off his back. The endo said I should be on T3 and increased the dose. After the second increase my GP who had a letter from him still wasn't happy even though I seem to have the rogue genes that stop you converting T4 to T3 appropriately. He refused to prescribe but said he would put it to the CCG. He then called me to say they had refused but that he would monitor me so I guess thats a step in the right direction.

  • There's ample research reviewing why a good proportion of people cannot convert T4 to T3 properly. I'll leave it to other readers to dig it up for you.

    In the US, though care varies, generic liothryonine is cheap and widely available from several manufacturers by prescription. I've been on T3 only treatment due to high reverse T3 and throughout cancer treatment for over 4 years. I tried T4, but don't convert well.

    After seeing comments about your NHS here, I did some digging and found you have a political problem driving the difficulty in getting proper testing and T3.

    From what I can make out, your government has contracted with only one T3 manufacturer who chose to jack up the price a couple years ago to about 50 times what it should be, far more than in other EU countries and more than in the US. And, rather than contract with a competing manufacturer, like Mylan, Perrigo, etc. someone in the bureaucracy decided to cut off the supply to you patients due to the unreasonable cost, and put out a lot of nonsense propaganda, rather than fixing this problem, thus putting thousands of you into misery.

    Seems like you all would be best served by gathering your data, gathering pricing info across first world countries and pointing out to your elected officials the cost to society of people not functioning well due to inadequate thyroid treatment. Tests for free T3 and reverse T3 should be made widely available, as they are in the US and elsewhere, along with NDT and T3 to fix this travesty.

    Good luck in your crusade... I'm rooting for you from afar ... 😉

  • Thank you so much. I have the genes that mean I can't convert T4 to T3 adequately. I always felt very ill on T4 and guessed I had a huge amount of RT3. I then started taking T3 but did it all on my own and my husband, while he saw the benefit was still worried about me doing it on my own. Hence why I asked to be referred to an endo etc etc.

    I know about the Monopoly and I think its disgusting. I would cost the NHS about £750 a month in T3 and I feel bad about that when I can get it for something like £30 a month from Turkey.

    However, I respect myself too much to go it alone any longer. I had to pay £10k for an operation for my daughter who was misdiagnosed and I feel I have no other call on the NHS other than my daughter being Type 1 diabetic and needing insulin.

    Ive paid NI for 42 years. I want to call on it now.

    Thank you for watching me from afar.

  • What genes are those?

  • DI02 genes.

  • Numberone1,

    I just want to say I have a great deal of respect for you for fighting your (and ours) corner. Most of us don't have the energy, resources, time or courage to do it. If we just carry on self-medicating rather than demanding the treatment that we righteously deserve, nothing will lever change. HU members are the lucky ones as most of us find the way of getting better BUT there are plenty of other people out there who are very ill and who never get the right type of medication and sometimes even die as a result...

    All the best of luck!!!

  • Thank you. It is for that reason that I feel bad for everyone who has suffered the way I did.

  • I'm so sorry for what you have been through. I would have never thought I could get so ill AND both GPs and NHS endos completely failed to help me. I'm still alive due to this forum and the support and knowledge I received here. I hope I'll eventually get well enough to start making life hellish for incompetent GPs, endos and CCG's members. I might make complaining my new hobby ;) It's good to have something to look forward to...

  • Poor you. How bad are you? What are your symptoms? Has nobody given you any better advice? Are you able to pay to see Dr P? He was my lifesaver. I just dont think its right that I should have to deal with this all on my own.

  • None of us should deal with hypothyroidism on our own. The fact that I saw 7 endos this year and they failed to prescribe the right medication for me (T3-only) is something I still haven't come to terms with. On the positive side: it has made me an extremely well informed and assertive patient AND I have received lots of support and good advice from admins and members of this forum ;))

    I don't want to jinx it but, hopefully, I've turned the corner now and the worst is over. It really scares me when I think about the people who already have other "luggage" (e.g. trauma, depression, low income etc.) and have less resources in terms of their personal resilience, social support, money ....and then they become unwell with hypo and don't receive the treatment they need from their GPs and endos. It's frightening ;(

    Thank you for putting up the fight!!! Take care xx

  • That has already been done by tpauk.com to know avail

    our nhs dogma will not see the wood for the trees and whilst theres plenty of research about the DIO2 gene the NHS does not do the test or recognise it despite the research being done by one of only 2 decent endos in the uk

  • Good for you for taking the system to task but in my experience you are up against people who are not at all clued up about the details and effects of Hashi's or thyroid illness.

    I had an endocrinologist who examined my oedema through my tights and said my lethargy was due to doing too much.

    They are - largely - ignorant and stubborn and it's like beating your head against a brick wall.

    My tactic has been to self medicate and report the results back to the gp/endo as an i-told-you-so.

    I wish you every success!

  • My annoyance is that my endo says I should take T3 and he's an NHS endo. I don't understand why my GP can't go along with it when other GPs throughout the Country seem to prescribe (albeit cautiously).

  • Good luck.... I was/am on T3 only therapy, I had two appeals three refusals had support from my Dr and endocrinologist and my old endocrinologist, my CCG were immovable on there decision to not perscribe. I sadly have to buy mine now from Europe.... don't get your hopes up!

  • Thanks. Im not. Just want to be monitored and to make a point too.

  • Good luck. I'm dreading my CCG doing this to me.

  • I tried from the other end so to speak - writing to whoever I could think of about what I saw as a monopoly. Monopoles are supposed to be frowned upon. I got the equivelant of a pat on the head and "go away dear" replies back, incuding such statements as "The Welsh Government is committed to high levels of care" (the first 4 words should be true!) and absolutely no one was interested. Made me wonder who was on the board!

    So good luck, keep us informed, we are all behind you, staggering slightly and yawning, but willing you on!

  • And politicians wonder why we hold them in contempt!

  • Your doctor said the CCG had refused to fund it, did he show you the letter? If not, ask for a copy and if he asks why you want it tell him that you want to respond directly to them in order to make your case as to why they should pay for it. You might like also to ask why they employ consultant endocrinologists if they are then going to ignore their recommendation for a patient treatment, it may be for an over-priced drug but it's probably far cheaper than a lot of other drugs they pay for so they have no right to play God with your well being by refusing it. I can think of several treatments provided at far greater cost which I don't believe should be paid for by the NHS, they need to prioritize not pick and choose.

  • My GP didn't show me the letter because he called me personally but he actually advised me to appeal. I guess he wouldn't do that if he was being dishonest about it? I am writing to the CCG and copying him in on it so would look an idiot if he hadn't actually asked. He also said he would expect to have to answer questions to the endo also. I just don't get it other than the NHS are being hoodwinked by the sole manufacturer. I have just had to order some more T3 from my supplier. I feel like Im importing "drugs", going through different loopholes to pay and describe on the bank transfer etc. Then hope it arrives in time etc etc.

    Nightmare.

  • That's different then, sounds as though the GP is actually on your side. As for the drug companies, this isn't the first time they have taken the NHS for a ride is it yet it keeps on happening, makes you wonder if someone is busy taking a bung, how else could the price hikes just happen and no one seems to question it?

  • I believe the reason its so expensive is because somehow there is only one version of T3 that is licensed and therefore that company have a monopoly. So wrong isn't it. I doubt my GP is on my side. He has never wanted to talk about me taking T3. Probably scared for his job which I understand. But I always thought that if I had that strange gene, then they could be seen to prescribe for that reason without fault.

    Who knows.

  • Numberone1,

    It is unlikely that the CCG itself is making the decision. They will most likely be relying on a CCG Group for the advice, perhaps called an APC (Area Prescribing Committee) or an MMG (Medicines Management Group). You need to establish which is your local group and attack them, not the insignificant CCG.

    That is what I have been doing now for the last 2 years re NDT with little if any progress yet.

    If you need T3 in a hurry, and it source sounds like you do, then buy in on the web 'cos it's a darned site quicker. But still attack the APC/MMG/CCG and whoever else you see fit to attack as they are all stark, staring bonkers.

  • Janie Bowthorpe and Mary Shomon have repeatedly publicized articles that support T3-only or T3+T4 therapy.

  • As I was running out of supply and now have to appeal, usual procedure, order online, hope it comes in time. arrange bank transfer with odd sounding company, get told not to say its for medication ordering incase it gets stopped, sit by the door every day hoping it arrives before I run out. I feel like a drug runner as Im sure all the rest of you do. How do we even know that what we're taking is actually safe.

    Unacceptable! I have the NHS to help me not to make me more ill, not to order my own blood tests and hope I read them properly etc etc.

  • Ok unless you have any other undisclosed medical conditions like heart disease, the so called safety excuse needs more explanation by them, I say this because I bet if you ask that they cannot come up with a logical answer. If you don't have heart disease and they say it's to do with heart palpitations etc, if you do get some T3, expect that your heart rate may increase for a while, your body/heart needs to get used to the extra energy it's not used to, think of it as your heart going to the gym without you on the treadmill. As for expense that's a load of crap, they just want you on statins antidepressants etc. Hope this helps

  • Thanks. I have no heart problems. I have been taking T3 for about 3 years already and Im fine. I have to order it online and surely thats unsafe if safety is their issue. I believe expense is an issue because there is a monopoly on this. Only one company is licensed to issue it and therefore they make the most of the cost. It would cost the NHS £750 per month to prescribe for me. I can get it for £35 for 2 and a half months supply.

  • Yeah not calling you a liar, but don't you think that's a load of crap so you do without it "guilt mode" they don't like it when people seem to know more than them too, grrr

  • can you get the endo to write the prescription?

  • Actually the endo said about getting my GP to write a prescription or to carry on getting it online ie he actually asked where I was getting it at the moment and I might have to carry on doing that. It was lie "where are you getting yours at the moment, India?" "No, Turkey" I said. I felt like even he was being irresponsible. I think he foresaw the issues.

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