After patiently waiting 2 weeks I received the response from my CCG following my request to reinstate my T3. I have attached a copy of the reasons given. They have referred me back to my GP, although the letter goes on to say their advice to GP’s remains unchanged and sadly my GP refuses to acknowledge the Endo’s prescriptions and refuses to dispense T3. I’m gutted and feel like the life I had last year has been ripped away from me all over again.
CCG response-so disappointing : After patiently... - Thyroid UK
CCG response-so disappointing
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Occamoo
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shawsAdministrator
They are stating lies regarding the evidence. There is plenty of proof of the advantage T3 has over T4 and I am one. There are also plenty on the forum who either take NDT which they have also made False Statements about as well as T3.
Considering that it is T3 that is the only Active thyroid that goes directly into our T3 receptor cells and doesn't need to be converted from T4 it seems to make sense to give a T4/T3. They do not believe patients and maybe it is Big Pharma who is agitated in case we all switch to a T4/T3 combination which quite a number of Research Teams have found the case to be positive for the patients.
Those who feel fine on levo and are still in full-time work and have immense energy with levo will not be on this forum.
There is a section of the thyroid society worldwide who cannot get better on levo and just look at the following and you don't need to be a Professor to realise something is far wrong with the guidelines. Guidelines for whom? Not for patients certainly not.
I take T3 only. I take no other thyroid hormones. I am fit and well. I am not at the doctor every week with complaints - I have no clinical symptoms. On levo I was forever in and out of the A&E by ambulance whether abroad or at home, from work etc etc. Cardilogist puzzled. I have no need of a cardiologist on T3 only but did when on T4 only. The following are links from Dr Lowe who was an adviser to TUK he would never, ever prescribe levo - on NDT or T3 for thyroid hormone resistant patients. Below is Chapter 3, 4 and 7 below.
tinyurl.com/ya5blrr2
tinyurl.com/y7ejh9sh
tinyurl.com/ycxpz565
hormonerestoration.com/Thyr...
hormonerestoration.com/PCon...
It is no wonder Dr Lindner is taking on no more patients at present.
Shaws, thank you for the links, I shall read with interest. I will be contacting my Endo on Monday and sending him a copy of the full letter from the CCG to see if he is more willing to help.
What were your symptoms on T4 only?
My main symptoms are digestive issues, lack of energy, feeling very low and weight gain. T3 really helped with the eradication of all of these symptoms especially the energy levels - I started running again.
I am suffering terribly with digestive symptoms!
With hypo we can have digestive problems. They could be caused by us having 'low' acid rather than high due to being hypothyroid. Many of us take digestive enzymes with meals, particularly those containing protein.
Doctors are apt to provide -acid suppressing prescriptions - as symptoms of high or low are so similar.
shawsAdministrator
This is from TUK for reinstatement of T3 but the doctors/endos are just ignoring patients who need it. It is a catastrophe for many patients.
This makes me so cross! Send them the transcript of the Lord's debate, that's what I am currently in the process of doing. This email has so far taken me 3 weeks to produce. Don't you just love having no energy haha. Good luck and keep on fighting x
Thank you. It is clear from the content of the letter my CCG has no idea about the debate! Good luck with your email.
They literally don't care about individual circs. Most recently been denied my BOTOX injections that I have been having for about 7 years. Despite pleading about physical and mental health I have to now have iontophoresis in a hospital 30 miles away via patient transport. 3x the first week, 2x the 2nd and then weekly for 3 weeks. If that doesn't work then I can get the injections. Trouble is I can't even start that regime for a couple of weeks as I have other appts and they are only open Mondays Weds and Fridays. I have been sweating and stinking again for well over a month already 
sorry for the rant. Just feel let down sometimes as I didn't ask to be born with all this stuff wrong with me but CCG quite happily deal with people on Friday and Saturday nights that have got themselves in a right state. Isn't an ambulance like £300 to start off with?
Anyway, hopefully we can get through to them soon, fingers crossed 
We women would not have a vote if it wasn't for the suffragetes. So with 80,000+ members not forgetting all of the unwell women who don't have access to the internet plus all of the thousands of pounds spent by the NHS on dealing with symptoms rather than giving those with hypothyroidism an 'option'. They are willing to give us plenty of prescriptions or state we are mentally unwell which we might be if we don't have sufficient T3 circulating in our brain, our body, and our hearts.
So I can see how someone will eventually maybe get a problem with their heart.
I had awful palps and awake nearly every night, trips in ambulances etc etc. No matter where I was - abroad - at work - in bed - it went on an on. Cardilogist was puzzled and was contemplating putting 'something' in heart to see what was going on. I had previously all the 24 hour halters etc.
I have not had any heart problems or trips in ambulance -no wrapping my neck in ice-cold towels to try to dampen down palps - no cold showersl. Miraculous????? No - just a switch over to T3.
But T3 is so dangerous and it doesn't work!! 🤣
It causes danger to us if not prescribed because it can relieve all of the miserable clinical symptoms
SlowDragonAdministrator
You need to write to Lord O'Shaughnessy outlining your situation (if not done so already )
See here
healthunlocked.com/thyroidu...
Also copy to Lyn Mynot here for meeting with Lord Hunt
healthunlocked.com/thyroidu...
Will your endocrinologist give you private prescription for Liothyronine? At least then you can gain access to cheap EU T3.
Thanks SlowDragon. I will be sending details of my situation tomorrow.
My Endo made noises about a supplier in Germany but never followed through with contact details even though I requested it from him on several occasions. Will be seeing him again in August.
thyroiduk.org.uk/tuk/treatm...
Bennewitz in Germany is most user friendly. Prescription only
Boxes of 100 tablets of 20mcg so prescription should read
Liothyronine 20mcg x 100
Thank you.
Occamo am so sorry to hear whats happened to you. Its complete madness & goes against what is known out there. Even the British Thyroid Association admit there are patients who need T3. This isnt to do with best practise but short term costs. As you quite rightly state it will end up being more expensive as your health will be affected needing other medical intervention!
Im currently fighting for b12 injections. I have neurological symptoms which should be treated immediately according to NICE, NHS England & Haemotology Uk, PA Society.....but am being refused as the CCG, my GP says, they wont allow it. The injection costs the nhs 55p!!! However sent me through to neurolgy -one visit there would cover the cost for several years of b12 jabs!! Madness!
I really feel for you. I would contact your Endo & ask for help. I would also write to your GP explaining your current situation & that your T3 has been medically advised by a specialist. I would state that to withdraw it will cause you harm because you have a recognised Gene fault which causes conversion problems from T4 to T3 & therefore you need T3, liothyroxine to treat your hypothyroidism as you will not be able to convert the levothyroxine into T3, the usable form. I would ask for this letter to be placed on your medical records, copy the CCG in, and your Endo. This means that if anything happens to you as a consequence of what they are doing they are liable & accountable. They wont like the implications of this....so hopefully some sensible person somewhere in the hierachy will see the light.
Hi Wavylines
Thanks for your support. I hope you get sorted out soon too. I will be contacting my Endo tomorrow. Fingers crossed he is supportive.
Clear legal outline that GP can and should prescribe
healthunlocked.com/thyroidu...
Hi SlowDragon
Thank you for sending that. I have just submitted my experience and a copy of my letter via the links you sent me yesterday. Thank you for your help with this.
Good luck. Be calm but persistant. Diogene's given you some good advice as well. Im afraid the nhs has lost sight somewhat of what their focus should be...which should be whats best for the patient & clinical effects of treatment on you as an individual. Hope all gets sorted!
I rant so often that my husband now tells me to shut up...know any good divorce lawyers, anyone?
Seriously, I don’t know what you can do against so much ignorance. I read so many papers on the internet that I’m going boss-eyed. My experience is that even if you find a scientific paper which promotes the use of T3, there will be several papers which do not and these are the ones your doctor and Endo. Have read.
My GP stopped my T3 5 years’ ago; I didn’t bother to argue as I’d had these sorts of conversations before and it did not good. I buy my own but as I take 200mcg a day this is quite expensive.
Good luck.
penny - I know what you mean but if we cannot rant and rave at home where can we.
Most of our friends know we are obsessed with thyroid but it is because we cannot get the hormones we require as individuals.
By taking 200mcg a day, you have to have Thyroid Hormone Resistance and I'll give you a link by a doctor who was also a scientist/researcher and Advised Thyroiduk.org.uk.
This could help your case.
web.archive.org/web/2010103...
When people take medications they usually recover from their symptoms/illness but the majority on this forum are far worse after being diagnosed and when on levothyroxine. No wonder family and friends cannot quite believe we feel so ill.
diogenesRemembering
The advice given to CCG's does not give them carte blanche to withdraw T3 from those patients who have been prescribed it. If an endocrinologist has supported the continuation of T3 treatment, then this satisfies the guidelines which state that though consideration should be given to substitution of T3 for T4, in special cases where this has a detrimental effect on the patient, T3 treatment should be continued. I do not see in your case, if an endocrinologist has prescribed T3, neither your doctor nor the CCG have any right to question this. You should contact the CCG alerting them to the present guidelines and their interpretation and warn them that they are misinterpreting these..
Utter rubbish all the proof they need is your improvement. My local ccg stopped my gp prescribing so my endo did my prescriptions. Then that ccg stopped them, it took 10 months to get it reinstated. Now my local ccg reimburse the hospital. My mp was very good and he bombarded the ccg with letters. Ccg told me quite openly that only those who fight will keep it but they know most won't! !! My endo also said they will be watching him and he will have to keep justifying it. Seems they would rather stop us having T3 than address the shocking prices.
I find it quite obsessive - and frustrating. I spend a lot of time reading about thyroid issues, this forum and medical reports (not that I’m medical) and it is fascinating, not least that the UK has gone so wrong in its diagnosis and treatment. I find this latter point bizarre as diagnosed and optimally treated people contribute to the economy. People keep asking me why it is that T3 is being stopped if it is needed by a lot of people to stay well with hypothyroidism; they cannot believe that an essential medication is not available. Nor can I.
I recall quoting Dr. Lowe, in my conversations with my GP, to which he refers in his letter to me stopping my T3. The GP’s response was that Dr. Lowe is not mainstream and his ideas have not been scientifically verified, or words to that effect. I’m not sure what he thought of the scientific validity of my blood T3 being 0.01 and not being diagnosed as hypothyroid!
Apologies but I haven't had time to read right through all your Replies or click on the links given to you. I am rushing to get to church to pray right now, as I need to pray for a miracle!
The only way I was able to keep my T3 prescription was by buying a private DIO2 test from Regenerus. It returned as a faulty gene from one parent (heterozygous), so I printed out 6 copies or so, gave one to my GP, one to various endo's. Their eyes rolled somewhat as they didn't fully comprehend but I was able to argue my case for T3 NHS prescription. I have to get a 6 monthly prescription from endo.
Many of us have written copious letters to 'important' people but only receive negative replies or a standard letter from the clerk.
I felt horrendous on T4 for 14 years, in fact worse on it than on nothing. I had a strong gut feeling that my DIO2 Regenerus test would return as having a faulty gene; I was proved right and it gave me ammunition. We very sadly need as much ammunition as we can get our hands on. Very best of luck x
you have my sympathy. i have begun legal proceedings against the nhs - last years hashis disaster was 3rd serious strike and i'm over it (not just thyroid). appreciate the nhs, its a great idea, but when it goes wrong it goes fabulously wrong and they need a comuppance friom time to time. keep you all posted
joydot A few members who post & reply on a daily basis will recall that I have been mythering & ranting on for about 2 years about suing the NHS for my 36 lost years. For the utter lies in my medical notes, for the TSH of 17 when my GP at that time kept saying Nothing wrong with you therefore I couldn't claim any benefits & had to sell my house, for the prof endo who nearly killed me by insisting I revert back to T4 only when I continually told him I needed T3 (which Dr P had prescribed), for the 3 consultant psychiatrists who were unable to join up the dots when they knew I had been diagnosed with myxodema, etc etc etc. I've phoned & written to many law firms, in London & more locally. The latest was a very helpful female med neg lawyer near me who said I would need an 'expert witness' to argue against the NHS. Where does one find an 'expert witness' who is not tied in with the NHS? Also extremely strict time limits, so if you had any knowledge about your condition 3 years ago you have no chance. These endo's know full well that there's nothing we plebs can do. It is probably in fact the British Thyroid Ass or Foundation, or Royal College of Physicians, NICE et al, we should be suing as it's them who give the orders for these vile doctors/endos.
By the way I wrote a 3 page letter yesterday to Lord Hunt of Kings Heath, with copies to all the Lords & Ladies who spoke at the House of Lords debate on 20th June 2018, also copies to Lord O'Shaughnessy (Parliamentary Under-Secretary, Dept of Health & Social Care), Simon Stevens (CEO NHS England), Prof.Sir Malcolm Grant, Chair of NHS England Board). I told them my full horrendous story and exactly the financial state I have now been left in due to the medical negligence. I will wait to see what falls out of that lot now.
Joint ITT Improve Thyroid Treatment. They will give you lots of support and may be able to suggest someone who could act as your expert witness. You probably could do with more than one. They have spoken to directors of NHS England at conferences etc.
Good luck Jane
Hi Jane levelslass , thanks for your suggestion. You say they have spoken to directors of NHS England at conferences. Surely NHS doctors/endo's would gang up on these expert witnesses who are saying different to them, and not saying what the BTA et al state. This expert witness thing was what made me not even commence. I felt there would be so much stress.
Have you thought of passing your letter onto Lyn Mynott for her to use as evidence in the debate on T3?
Hi Occamoo. I'm based in Somerset and I'm taking 75 mcg T4 and 25 mcg T3 split into two doses. Sorry if you've already had these suggestions. Haven't got time to wade through 37 replies.
1. Recommend you contact your PAL Patient Advice and Liaison Officer for your local CCG area. They will support you and liaise with your CCG medicines manager and also more importantly in some ways your complaint will be noted in the statistics. Which if you just complain to your CCG will not.
2. If the Endo has recommended then let him or her prescribe as T3 can only be prescribed by so called secondary care now.
3. Go to hansard.parliament.uk/Commo... Sir Vince Cable
Read it photocopy it and send it to your local MP and complain bitterly. This is your life that is being disrupted and made miserable.
4. Join ITT - Improve Thyroid Treatment if you haven't already. An online protest group comprising of hundreds of T3 takers just like you and me.
5. Get very upset and very angry. Throw your toys out of the pram. It's not your fault that the NHS got conned out of £34 million and now can't afford (allegedly) to buy T3.
6. Seen the same info you have been given by CCG. Yes of course the studies show T3 doesn't work. The doses were too low. 12mcg per day or whatever it was, wouldn't help a fly!
Good luck
Jane Osborne
I believe ITT is only available on Facebook?
Thanks for your message. I will be trying some of your suggestions, especially number 5 😀.
What is happening to you is awful; the situation you find yourself in is not unique and it is one of the reasons why we are all on this forum to provide mutual support and help. I have written to my MSP, the First Minister and got only mealy mouthed responses which were actually contradictory. According to the letters Clinicians can prescribe T3 and NDT if they think it is in the best interest of the patient etc and clinicians can consult with other medical professionals to obtain information, advice etc - but, as many people with Hypothyroidism have found out-the doctors and Endo's are choosing to ignore evidence and what better evidence is there than patients own experience?
I imagine one day it will all blow up and a huge scandal will be exposed regarding remuneration and 'freebies' for promoting T4 only and refusing to listen to patients.
If the world were 1/1000, including Donald Trump, as "religious" as they claim(ed) to be, they would say that this must be the devil. After all, is he (the devil) not the original liar and the "father of all lies?"
I am in the exact same position as you are, stuck here in Florida, where even my wife is under the "spell" of these charlatan "doctors," probably because she looks at them as most of the world does, as "geniuses," who know so much more than she does, not realizing that she could "empower" herself but only if she gained the ability to obtain the knowledge that she would need to: "question their authority" but she refuses to see it, even when I hand her the "truth," from my blood tests & explain to her what these doctors are doing and "not" doing, & not only to me alone but to so many others. A pity, a shame, 43-years we've been married and I can feel this distance (between us) widening, instead of lessening.
We, any & all thyroid sufferers, goiter sufferers and any other "sufferer" from any (mis) diagnosed sickness need to band together, some how, some way, sometime and I don't mean for a book publishing, enough books have already been published on these subjects: we need a thorough "investigation" of how & where these "rules" ever became "rules?" Or are they "laws?" I mean, what if I forge a doctor's signature to get my sorely needed T3 or NDT? What will the "system" then do? to me? Members of my own family, one of my very own children, after I tell her how badly I feel, from taking these T-4 alone pills, actually told me that I should: "Wait until they take you to the emergency room, then you'll get some "action," then they'll know why you are sick and "help you."
Are these the depths we have now sunk to in this world? I mean, is it that those "in power," can do as they please with anyone, any "patient," any citizen, anyone who they hold this "power" over?
Is this a joke or what because I am beginning to believe that only the devil could, actually, be behind this. After all, who else could get entire countries to have their "educated, professional population: "lawyers, doctors, generals, etc. become "dictators" over the "working class," in other words, the less educated, class of people.
Well, come to think of it, now we know how Communism began, don't we, and still begins, while autocrat rulers take over. A shame, a real shame, that human beings would actually use their "power" to purposely let others suffer because if these doctors are not (purposely) bonding together to hold to this "RULE" of T4-only then, as a group, they are some of the most close-minded, idiotic nincompoops I have ever been aware of. Oh, wait a minute I know of a President who would put them all to shame: no on second thought, he would lead them forward and they would follow, lying, hurting patients by practicing their "voodoo medicine," even as they smiled the "skull smile of death" that all followers of the devil smile: be they soldiers fighting in a war about to kill another like themselves (a human being) and only because the other soldier wears a different uniform, carries a different flag and (usually) has a different hue (coloring) of skin and has been "brainwashed" to believe he is "helping his country," ordered to pick up a weapon, pistol, rifle, bazooka, bomb, doesn't matter he must kill now because if he doesn't another soldier will "kill him."
Well, that's way too much diversion but I am serious we need a (peaceful) revolution that will empower all "victims" of this menace called Capitalism and all those who fall under its spell because you will lose, if you join them: you will lose your power to think, you will give it up and all for "a position, money, health (can you actually buy (bribe) to regain or have your health) The Capitalists, for sure, want us to think such is true. I don't know how or what we can do but, for myself, I will write about it, speak about it, and continue to speak the truth, no matter where it takes me, after all, a man (in this 'godforsaken' world's history) once appeared and (claimed) he spoke nothing but the truth, which he did, and he was crucified for it, so I don't really expect much from anything I do, say or write; I only do it for my spirit tells me to and even if I (indeed) do die for it, I will continue to. Peace, brother.
GKeith - Thank you for writing your intellectual rant. It's 04:50hours in UK and I can't sleep so logged onto HU. Found your words and must reply to you but a shortened version as I am tired. I am on the cusp of suing the NHS for 36 lost years of my life. I went over it all once again to the latest law firm about 2 days ago and I'm still waiting to hear if they are willing to take on my case. Again, earlier this evening, it all went through my mind again, as if rehearsing in case I ever stand in front of a judge. Each time I say it all, either aloud or just in my head, I am reminded of how many doctors, consultants, endocrinologists, psychiatrists, etc. failed (with bells on) to correctly diagnose me. If just one or two, or maybe even three, failed to diagnose me correctly then it could just about be forgiven. But that many? Therefore, to a logical person, there must be a conspiracy. Surely. Or what else could it possibly be? Do the governments, the healthcare systems, the benefits systems, the qualified and trained doctors (earning their Quarter of a million per annum) really really want us to be left to rot? Is this about arrogance, chauvinism, misogyny (only 10% of thyroid sufferers are male), Them versus the Plebs, keeping the ignorant right down in the gutters? But it's certainly costing them financially. We end up unable to work, therefore less taxes paid, end up on government benefits, continually return for more health checks unrelated to the thyroid (when it's the thyroid all along); and so the costs continue.
I have in the past offered to chain myself to the railings outside Parliament. A few offered to come along, but most are too ill and tired to manage. The girls (I don't think any boys are involved) who have set up ITT (Improve Thyroid Treatment) are doing an amazing job, shouting out and slowly getting high profile people involved. However, I personally believe the dirty truth is not going to be uncovered for quite some time, if ever. Dark forces are at work here..... I fully comprehend your words.
Thank you for your thoughts. I have had many such similar thoughts: Maybe go to Washington, D.C., actually I was raised just outside D.C. from middle school all the way through H.S. Only this time, I would have a large sign and a crowd (group, gathering) all holding signs and chanting "Make the truth appear here today," or some such slogan that would take the entire health care 'SYSTEM,' actually Capitalism, and put it on trial.
The only problem, of course, is that has already been done, in Russia, in the Revolution in the 19th century, and we all know how that turned out, but, still, it is a thought because, something, definitely, similar could be done. Like, maybe the 'human rights campaign,' led my Martin Luther King Jr., back in the 50's & 60's. I picture myself in the front of the crowd of people but then, we all know how those marches ended. Bloody, people attacked by the police and their rabid dogs, arrested, including MLK, and other seemingly endless sufferings by those who dared challenge the "System."
I think, we could do it, I could, for sure, even a I remember that JFK, a very liberal man and generous, intellectual thinker was POTUS and, of course, today, we have a man who can't even convince me he is actually a human being, so everyone knows the ending. But, I think, I'd still do it ... maybe sooner than I expect, as thing with Trump in charge are in preposterous condition.
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