Just wondering if anyone has formally challenged their GP, CCG or Medicines Management Group or made a complaint and, if so, how did you go about it and what were the results? Thanks
T3 Blacklist - Anyone challenged their GP or CCG? - Thyroid UK
T3 Blacklist - Anyone challenged their GP or CCG?
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MajorTom
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I don't know about your specific situation but I wouldn't waste your time. Just remember that they hold all the cards and in all likelihood you will get nowhere. Their hands are tied by the ridiculous NICE guidelines anyway on which they rely totally. It would make more sense to put your energies into researching your illness yourself and finding your own measures to help. It wasn't until we did this for my daughter that we made any progress. Jane x
Nothing will ever change if we have such defeatist attitude.
I disagree. Been there - done that, as they say. It's a waste of time, not defeatist. A defeatist attitude would suggest not looking for solutions. We've found our own solutions, not continued banging our heads against a brick wall. It's important to learn where to best use one's energies. The answer is simple. If you need T3 then buy it online.Jane x
janeb15,
I'm grateful that you have tried and I appreciate your decision to direct your energy towards something else. However, if something hasn't worked it means that one has to review and change their strategy, not just give up. I'm getting my T3 online but I most definitely do NOT see it as a solution. Take care xx
You are absolutely right. My daughter and I reviewed her action plan after 20+ years of following solely the thyroid route. This was 20+ wasted years, and many thousands of pounds wasted. Privately bought T3 helped to prop up her system for many years, but thankfully we found the real cause of her thyroid dysfunction and other symptoms through our own investigations. There are always ways of working things out, but expecting our hopeless healthcare system to help is I'm afraid a lost cause for too many of us. They simply don't keep up to date. Jane x
Hi janeb15,
may I please ask the thousand dollar question? How did you go about finding out the cause of your daughters' thyroid dysfunction and what was the cause? I hope that you do not mind me asking.
I would be delighted to help if I can. I'll send you a PM. Jane x
Could you send to me as well please janeb15 😁😁
I would be interested in what base cause you found for your daughter. My very long road has taken over 30 years, so many doctors I have lost count, tests including blood tests that drove me crazy. Nothing improved where I could say I was well.
I would be grateful for any information as I am well at he moment.
Thanks
Jane,
I don't expect docs to do the actual THINKING. It would be way tooooooooooo much to ask. I just want them to prescribe. That's all xx
LOL! Yes that would be nice. Sadly for many people who have "normal" thyroid blood tests they can't even get their GP to take them seriously let alone an endo. They need to find a functional doctor who is prepared to dig deep for answers. x
Yes the functional doc is the answer unless you have a good GP who wants to learn and listen. They are far and few .. not true healers.
There are very few functional docs in Europe ;( If you are in the USA you stand a chance of finding one.
I forgot to say I am in Australia and there are functonal doctors but you have to find them. Then almost impossible to get an appointment or go on a very long waiting list.
It took me 5 months for my first appointment because it needs to be a long appointment.
I am not sure but I think there is a site that lists doctors. Will have to research that.
Yes, it seems many have problems thinking out of the box and beyond what they know and feel comfotable with.
Just got my compound meds and I ha a very indepth talk to the compounding chemist who basicly confirmed what I have written.
So for me too, just give me a script .... please.😀
You are right kitten1978, whilst complaints and the like may not win on an individual basis they will raise awareness that we are not just going to sit there and take it. If we keep going one day someone will take notice.
Sorry to hear you didn't get anywhere with health providers but glad you have found a way forward that works for your daughter. Unfortunately self medication is not a viable long term option for me due to other serious health issues and the costs of private blood tests / doctors now I can't work. So I'm looking at ways of challenging the current position
MajorTom, I'm sorry to hear of your circumstances, but my concern is that you waste your precious energies with a futile battle that you can't win. It could end up making you angry and frustrated and that's not good. This is not a new situation and those who make these arbitrary decisions seem even more entrenched than a few years ago. Jane x
Sorting the price is the issue. In Europe, in every country a typical years supply of T3 costs £300. On the NHS in the U.K. the cost is over £10,000 per annum. That is because a single company holds the license and controls the price and has just kept ramping it up. Germany and Ireland are examples of countries with much lower prices. Sort the price out and that fixes it for everyone, patients, doctors & NHS. A simple price comparison across Europe will show the problem.
Yep, big pharma monopolies, a whole other post! 
It is ridiculous that governments even allow these kind of monopolies. It is astonding the difference from UK to Europe.
My hospital endo prescribe me T3. Can you go down this route?
I was prescribed by the endo but have been blocked by the Medicines Management for anything more than a 28 day acute supply
my hospital endo prescribes t3 but as hospital and ccg wont allow it, he gives me private prescription and i fill it in france no problem. I get 3 months worth t a time 9 packets (30x25mg cynomel) 3 euros a packet unlike 258.00 a packet in uk.
My MP is jon ashwoth shadow health minister and he has bombarded my ccg to no avail, he is now asking questions as to who agreed this contract and the pricing structure. Of course now general election all this stuff will go on hold, if he loses his seat i just cant be bothered to start all over again. Pharma companies hold all the cards and bargaining chips so for me it is easier to go the route i have found. T3 is cheap to buy in europe and online, my problem with this is it is not on my medical records if i self treat, so for me i want it all on my records.
Thyroid treatment has alays been a real hassle and for an illness that does not handle stress weel, anyoe would thik they dont want us to get well!
xxxx
I bought T3 online and told both my GP and Endo, that I was going to self medicate but wanted their help. Both of which agreed to support me self medicating although my GP freaked! But my Endo has the overall say and agreed that something needs to be done to reduce the cost of T3! He could see I wasn't converting but has his hands tied by the NHS. But at least it is on my record and I'm receiving the support I need. Take control of your thyroid health I say and request your doctors help or you'll do it anyway!
That's good news that your endo and GP are able to support you. Do you still get appointments and blood tests while self medicating?. Unfortunately our area prohibits access to these
Don't give up! Ask your GP for a referral to a Consultant Endocrinologist and then the specialist can authorise your T3. Look after YOU. xx
MajorTom in reply to
Unfortunately it's my endo that's been blocked. He's writing the prescriptions but pharmacy won't cash them after warnings from the CCG and Medicines Management. I was only permitted a 28 day acute supply
in reply to MajorTom
Maybe ask for some deiodinase tests to check conversion.... please don't give up, your wellbeing is everything to you. I do understand, I went through the rigmarole in December and felt like I'd literally fought for my life. Be tenacious. We're all behind you xx
MajorTom in reply to
Thank you. Been on meds for 10 years, nothing gets me well but T3 with it's shorter half life gives me control to avoid periods of toxicity and crashes. Then prescriptions stopped, no warning or alternative given. I paid for the DIO2 test some years ago but don't have the conversion gene problem. Have bought meds online but seriously concerned about fakes getting into the supply chain (already happening with other meds). Can I ask how you are going?
in reply to MajorTom
Yes, the fake aspect is a concern. Maybe a yearly trip to Europe for a one night's stay.... it's dreadful we have to even think that way in this "civilised nation" we live in here in the UK. I happen to have a rare condition called isolated TSH deficiency. When the consultant reeled off the information about the trials not showing any benefit from T3 as oppose to T4 I interjected and asked "how many people in the trial have my diagnosis". I won my case and am allowed to have T3. I felt like I'd fought for my life as I take T3 only and have done for 12 years. Keep going, keep banging on doors. You deserve it x
I'm very lucky to get my t3 on the NHS and have done for the last 2 - 3 years. The practice manager has stopped my prescription a couple of times but my but I found a GP in the practice who supports me & so I'm safe for the time being. She can see from my records how ill I was on Levo & that I can't convert it.
What I think is a great pity is all the people who would benefit from adding t3 to their t4. I have a friend who has done that & she's like a new woman! We shouldn't have to self medicate to be well when there is an easy solution. I believe if everyone keeps pushing for a solution, things will change eventually.
Challenge them vehemently using as strong words as possible without actually swearing. That is the only way to go to give yourself and everybody else any sort of satisfaction.
To simply give up is not the answer to anything. I have no need of T3 as I take NDT and I am giving my CCG as much trouble as I possibly can to force them to give me NHS prescriptions for the ONLY product that gets me well.
The big problem is, though, that it is not normally the CCG who actually make decisions such as that for T3 and NDT. My CCG made the huge error of blacklisting NDT on a local level whilst justifying their decision using totally incorrect or misleading reasons quoted by others.
I challenged them and found that the real author for their decision was the local Area Prescribing Committee. Their decision to ask each of the 8 CCG's under their control to follow their instruction could have been accepted or rejected by any of them as some CCG's actually do reject similar instructions.
The blacklisting decision was due for renewal last November. I objected and hoped for the best. The APC delayed their decision until their meeting on 29th March and, following my enquiry as to their decision, reluctantly told me that the the revised notice was being written by some "outsider". I replied to tell them in no uncertain terms that I was very angry at their delay which has now extended until May. I will inform my MP of their decision whatever it may be and will strongly object if the notice to blacklist is not reversed or simply withdrawn, the "blame" then being put upon the BTA and other charities. I may experience troubles there as I suspect my MP will be retiring and the newcomer will be totally unfamiliar with what I am talking about, but I won't let that problem stop me.
I hope this gives you some inspiration to actually take some action of your own and maybe if every one of us does the same, then something will happen eventually.
ps, I suspect the author will be a certain Prof Vanderpump!!! I hope it gives him nightmares as he very much deserves them.
MajorTom in reply to
Thank you and best of luck with your correspondance. Yes here it is Lancashire Medicines Management who blacklisted T3 based on cost using misinterpreted information as evidence. Most GPs aren't interested and our latest MP is a Westminster career girl not interested in constituents. But I want to challenge this as t3 is only one of many essential meds and kit that are being blocked and putting patients at risk. I'll be interested to hear what response you get
I am due to have a review with endo next month so will doubtless have some challenge...I did renew my T3 prescription last week and it was signed off. Could be because it's endo approved but I don't expect it to remain that way.
Oh dear ! I'm truly exhausted with the research carry on (exhausted goes with the territory!!!) but I've learned so much here it's worth pursuing.
" but how did you know you were low in B12" a good friend asked .....researched it all myself and insisted on blood tests after several health Pro's dismissed it 😡
" it's just all just anxiety and probably symptoms are from your hmm very complex Neuro condition "
....NO IT IS NOT and guess what I've just discovered the lack of B12 and folate can cause/exacerbate Brain Lesions and Seizures !!! WHADAYAKNOW 😳
Anyway just wanted to say thank you everyone for your contributions , I'm now seeing a way through the foggy mist !
SM
MajorTom Slight tangent but do the CCG's have more real world power compared with their predecessor the PCT? Just wondering whether their "gang mentality" can be challenged?
MajorTom in reply to
My understanding (but please double check) is that they are autonomous bodies but do not have a legal duty of care to patients like the PCTs did as it was removed in the Health and Social Care Act 2012. They are accountable to NHS England but without that duty of care there is no requirement for them to provide any service to anyone so no way to enforce anything. We're fighting multiple issues locally as the CCGs control pretty much everything now and have outsourced to private companies who fail to provide the services contracted for. Scary times
in reply to MajorTom
MajorTom thank you for replying. Yes, my feeling also is that CCGs are controlling pretty much everything and let's not forget that some canny doctors have set up companies to provide private services to the CCGs. It's a win win for them.
MajorTom in reply to
Sadly a loss for many patients 
Yes I did challenge my GP ant my CCG my GP (Head GP) they had actually cut down my supply and when I went to see him he told me that the CCG were going to issue a mandate to gp's not to supply I head a very thorough discussion with my GP told him without T3 I would become quite sick and it would be down to him and his pratice to support me and it would probably cost him more in the long run. Contacted my CCG and several leters questions and answers later they told me my GP would be supplying me until such mandate was issued that was last October the CCG also promised to keep me informed as to when they would be putting this on their agenda for discussion so far I have not heard from them and my GP is still supplying If nobody ever challenges nothing will ever change
in reply to eghjm100
Interesting eghjm100 but you still had to fight your corner which in itself is not easy when suffering poor health. I'm not feeling comfortable with their power, it seems as though the patient is being forgotton about. As you say, if nobody ever challenges nothing will ever change.
eghjm100 in reply to
you just gotta shout louder
Just a thought and one that someone else may have already had, so apologies for the duplication - if we are denied T3 (liothyronine) on the NHS, then it no longer will be the "cash cow" for Mercury Pharma that it has been. £10,000+ a year for 20mcg (or more as in my case) a day , even for them, is not be sniffed at, surely? Could we dare hope they might review their current pricing?
I would love to think it possible but past behaviour indicates not. Sadly it seems these types of companies buy out the license to produce generic versions in an uncontested market, hike the price, then when profits drop they simply move on to the next. Concordia, who took over Mercury, did the same with my eye drops. Refused at the GPs an no UK alternative so had to buy oversees - fortunately they are not blacklisted yet and my ophthalmologist fought to get them issued. But it is a growing problem
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