With the help of my MP I have submitted complaints to Charing Cross Hospital, NW London ICS and NHS England about the ICS's failure to follow guidelines on liothyronine prescribing. NW London ICS is responsible for 2.1 million patients in the boroughs in the map on this page nwlondonics.nhs.uk/about-th... .
The ICS avoids prescribing liothyronine not by blacklisting it but by funneling all patients to a clinic at Charing Cross that is vehemently opposed to prescribing. Patients receive a sham consultation followed by a refusal to prescribe many months later.
I would stongly advise fellow patients who are on liothyronine or wish to trial it to not accept referrals to this clinic - insist on a referral to a doctor you trust.
We should not name doctors on this forum so please do not post comments that speculate about who the doctor is.
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jimh111
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Are you aware that private health care companies that get contracts with the NHS are allowed to use the NHS logo on their websites, advertising, and correspondence?
It doesn't mean the company with an NHS contract isn't taking a profit, or truly works for the NHS. They will be taking a profit from what they are being paid by the NHS i.e. profit first, company second, patients last.
I realise that this may be totally irrelevant to what is happening with the Charing Cross Clinic that won't prescribe T3.
Good luck - think I saw him and another equally self important doctor on a video that was taken down after a couple of complaints from me and another forum member.
This whole set up is a disgraceful big patchwork of bias and self interest and medical need is not on the agenda.
To justify their existence, they will have to ' save the NHS ' of so many existing written T3 prescriptions.
As for those looking for help as to an alternative to T4 monotherapy - they will have to self medicate in order to be able to continue to work and pay taxes into an NHS system that doesn't even acknowledge their health issues.
I would like to say I am surprised. I am certainly not surprised but I do continue to be shocked. I am not a person who worships the NHS but I do appreciate it’s creation. I worked in the NHS and I can tell you it works in a very separate and protected way. It’s maxims are very sheltered and ‘away’ from the real world. I can just see some t..t suggesting such a thing. Rubbing their hands with the bright idea of reducing their T3 bill with no idea (or the ability to be inhumane living within the NHS walls for all their working lives) of any possible knock on effect to the economy as a whole. pennyannie comments directly on this. The NHS seems to have ‘forgotten’ the basic reason why/how it was brought about in the first place. FREE AT POINT OF NEED. It has been protected from the real world by the rule makers and at the same time being destroyed by it. I thank you jimh111 for having the know how and the courage for this action. I know you will keep us informed.
I received a response from NHS England stating they cannot help because they are responsible for primary care: doctors, dentists etc. I should take it up with the Integrated Care Board (formally the CCG). NHS England also provide national leadership for the NHS. i.e. they oversee the ICBs. The general impression I get is that NHS England are a waste of space and money, the actually do very little, just talk. It’s not worth following up with NHS England.
I received this letter which was sent to my GP by Prof X at Imperial College Healthcare:
Dear Dr. YYYY
Re: Mr James xxxxxxxxxx
Dear Mr xxxxxxxxx,
I apologise for not staying in touch, and I realise that we were planning to undertake some investigations.
One of the problems you have is that you assume some of your symptoms are due to endocrine problems. When you take thyroid hormones, these are detected by your pituitary, which in turn suppresses your own projection of thyroid hormones. Thus you were normal at the start (as you pointed out from the blood test after your accident with a TSH of 1.0) but taking either T3 or T4 will then, by autoregulation, turn off your production of these hormones.
My goal is to help patients who are taking extra hormones of any type to adjust the dose to the minimum required to avoid side effects. In your case, you should be able to slowly reduce the dose of T3 and T4 to zero, and this is not easy, because you are suppressing your own system. However it is possible if you are willing to try. I am aware that you have some dry skin, but there are many other causes of that.
I also think that if you are not willing to try and help yourself come off these drugs, and I know you are not happy with our service, that there is little point staying on our books, and it will be better to seek an alternative doctor.
Yours sincerely,
Prof X
This was very annoying because I had sent three letters to Prof X detailing the severe signs and symptoms I was having from my attempt to come off hormone. He also had pictures of me when I was severely hypothyroid with a TSH of 1.0. These picturess are like the ones from a very old textbook, quite horrible. I had put in enormous effort and tried to contact the doctor many times. So, I have sent this response:
Complaints department
Salton House
St Mary’s Hospital
Praed Street
London W2 1NY
ICHC-tr.Complaints@nhs.net
Prof X at Charing Cross Hospital
Dear Sir / Madam,
Please see the attached letter from Prof X to my GP. It contains no clinical record whatsoever. Prof X is so obsessed with deprescribing liothyronine that adverse events are ignored, never documented or reported to other physicians. A serious breach of Good Medical Practice. I became unsure of Prof X and have sent copies of my letters to my GP practice without informing him.
The comment ‘One of the problems you have is that you assume some of your symptoms are due to endocrine problems.’ reveals his limited knowledge of hypothyroidism. My hypothyroidism was diagnosed by an outstanding physician and responds to thyroid hormone therapy. Each time I reduce my medication severe hypothyroid signs and symptoms resume.
Prof X asserts I was ‘normal at the start … with a TSH of 1.0’. It seems he believes one cannot be hypothyroid with a TSH of 1.0. My hypothyroidism was due to endocrine disruption. Endocrine disrupting chemicals (EDCs) disrupt thyroid hormone action in peripheral tissues but not in the pituitary, hence TSH is normal. The World Health Organization and UN EHP have issued a detailed document on the subject who.int/publications/i/item... in which they call for urgent action.
If TSH is suppressed for a long time (as mine was) the ‘axis’ is downregulated. Studies show that TSH recovers eventually in about half of such patients. The studies do not measure fT3, fT4 or symptomatic response and so cannot rule out TSH having reduced bioactivity. Prof X seems to uniquely claim 100% success.
There is evidence that TRH stimulation promotes TSH recovery. I asked Prof X to give this a try, he agreed to do so but failed to put this on record and later refused point blank. A TRH stimulation test would help diagnose any pituitary damage. Our car was struck at speed by a coach whilst aquaplaning, a very considerable accelerative force. This can cause hypopituitarism that manifests several years later.
I do not have dry skin. My skin becomes profoundly dry if I reduce my thyroid medication. This was evidenced by my iPad and mobile failing to recognise my fingerprint – an objective measure not subject to placebo effect. Zulewski found that dry skin was 63.8% specific for hypothyroidism, more specific than TSH as only half of people presenting with an elevated TSH have hypothyroidism. My skin becomes dry when reducing my thyroid medication and normalises when my hormone dose is resumed.
Prof X claims I am not willing to try to reduce my medication. I have tried for over a decade and on two occasions put in enormous effort with serious health consequences, as evidenced in my letters to Prof X. During my recent attempt the doctor went AWOL for six months, the physician was non-compliant not the patient.
Prof X ignores adverse effects, fails to record them and falsifies patients records. Patients are recorded as non-complaint or simply thrown off medication whilst recording a successful result. An audit of Prof X’s clinic should be undertaken to establish the scale of patient harm and inaccurate documentation. Prof X’s “T3 withdrawal clinic” should be suspended until this investigation has concluded.
Yours faithfully,
James xxxxxxxxx.
We must not name doctors on the forum so please do not attempt to identify the doctor in this post.
The GMC is for the establishment and they would probably refer back to 'local measures' so it's best to go through the local hospital complaints first. The GMC and litigation are fall back options. I can also appeal the hospital response to an ombudsman.
thank you for going to all this effort, ofc you are advocating for yourself here but the knock on effect will hopefully bring something beneficial to us all. Keep chipping away.
I ask simply because i was diagnosed with Graves 3 months after after being verbally assaulted and physically threatened by a man i employed as my assistant manager ?
Looking back I wasn't hyper in the conventional state of the word but totally blocked and it was as though my body turned itself off - just wish I hadn't gone through the company procedure and resigned straight away.
My company were worse than useless and since there were no witnesses ( of course, I realised later it was premeditated ) continued working for another 6 months and then resigned and learnt the unit, a coffee shop in a hospital - was to close as the lease was up and the hospital chose to run the unit themselves since it was very lucrative unit open 75 hours a week with 60 odd volunteers with just me and him as the paid part time staff.
P.S. I didn't realise he was a Professor of Deflection - but then they all are, aren't they when they can't answer reasoned questions ?
I don't remember the sound of the coach hitting us but was alert to the car speeding down the motorway so much have lost consiousness for a fraction of a second. I don't think I have pituitary damage but given the onset can be years later (didn't know that) and my low TSH it is logical to check it.
My wife was driving and the car was heading for the central reservation at a thirty degree angle, my maths knowledge told me this was a good angle to dissipate sufficient energy without having too much of an impact so I told her to let it go. It bounced off to the hard shoulder where there was bushes and a wire net fence. Ideal conditions for stopping a car and probably saved our lives. The car, a BMW, had recently failed its MoT, the guy was about to pass it but on the way to the office he noticed some rust on the cills. He said I'm sorry I have to fail it. I chose the cheaper option of having steel plates welded on top of the cills, it's stronger than replacement copy parts and you don't see any difference. This was also a stroke of luck as this is where the coach struck the car.
The whole incident sounds very alarming as you were well aware of everything and tried to navigate your wife to drive to mitigate more serious consequences.
I'm sure those minutes were filled with all sorts of inner turmoil and no one walked away without some mental and physical scarring
My Ex a consultant surgeon NHS, He says complain re the NHS complaints procedure, and before going to Ombudsman get an advocate to get the case ready for you to what they need for the complaint, Or better still Find a law society near you to set the complaint up ready for the ombudsman, I recommend them over any Advocate as they know the law, Its free, Students training and have a real solicited and Barrister they get work checked over by, They have helped me out so many times and got excellent results, so they are worth using.. I wouldnt recommend just taking too ombudsman without them setting out in way needed, that way they wont just turn your complaint over.... this may take some time re ombudsman, but if there is serious neglect in this Prof, it may well be worth asking the law society if it is worth complaining direct to the GMC again let them do all the back work and get it ready to send direct if the law society thing its worth going direct.. I see you saw my post on CCG and Nice, show that to law society as well, all helps... but to make a complaint in NHS the NHS procedure is the only way the NHS listen, It looks like you have tried trying to sort out with the Dr, and then to NHS England, I think complaining to CCG is a waaste of space as they are behind stopoping many get T3, so the nest step is OMbudsman heres link to NHS COmplaint for hospitals I think is different one for GP Link what they expect you to do for NHS complaint in link gov.uk/government/publicati..... As I said Law society knock spots of any advice service and will be independent from NHS and are a million times better than citizens advice as they are the law, I have had some cases delayed somewhat by CAB, and sorted quickly by the law society school ( Normally one in every city call your local one to see when they are doing next clinic, bare in mind they have school holidays are shut in-between terms like schools are, so avoid those times.. .. And the ombudsman likes you to go throw advice to set up.. By the way the NHS hate anything Legal threatened at them as it takes too much of time up for them... Drs hate going to GMC as they dont just go through that complaint but go through the Dr being complained about go through every single thing they have done since leaving Meed school to see what else they can get them on, its not a good place for them at alll, they even have a suicide line for those Drs that get called up by GMC so is quite evil.. nut dont let that worry you as these Drs need to learn not to treat patients like they are treating you
I also know of someone who took an Endocrinologist through NHS comes procedure it got sorted out at the ombudsman ( Thats really why they are there to stop the r going through a grusome time with the GMC.. They actually sent the whole Endocrine team and consultant on further training about Thyroid disease , so is a must to take to ombudsman, only problem is that will take about a year to resolve, but should still be done else these Endocrinologists will just carry on.. When words get around in Endocrine about Thyroid patients are fighting back and they are getting sent to GMC they will soon start listening to patients again.... By the way a low TSH when someone has pituitary disease should never be used its just T4 and T3 that they should be looking at, did they ever test T4 and T3 before treating you, if so what were the results and do you still have copies about it, and yes THR test is to test thyroid but will have to come of meds to have the test, it can also show Thyroid hormone resistance,
Anyway good luck on complaint let us know how it all goes
Thanks for your comments, I've printed them off for future reference.
I've avoided mentioning legal action so far because they will pass it to their solicitors and they will completely shut up, not answer anything. I had to have expensive dental treatment as a consequence which I briefly mentioned in my complaint. This leaves the door opened for compensation. As you say they hate a legal challenge if only because it costs them money.
I wasn't aware of the Law Society giving help, I thought they just regulated solicitors.
I have held off going to the GMC because they are on the side of the establishment and in any case could refer it back to the ICB (formerly CCG). By making a complaint against the ICB I can preempt this option. A GMC complaint is a future option.
Jim, I’m putting this up here, and no names will be mentioned apart from that of the hospital clinic. I hope this is ok- I think that this is quite important considering the influence this clinic and the individual doctor have in the world of endocrinology.
The clinic failed to diagnose my central hypothyroidism. I don’t think it’s a particularly unusual condition and they should be able to. As a result I was very nastily abused by my gp. I would have gone untreated if I hadn’t managed to escape their baleful influence- untreated hypo is horrible, I was bedridden and so ill I didn’t really have a life worth living, and there are many sequelae to simply leaving it untreated. I find it hard to believe a large nhs facility is just that poor.
As to the individual, you know my thoughts there. Once again, nhs patients deserve better.
As a young student I studied mathematics and physics at A level and Imperial College was very highly regarded (when they were part of Univ of London). So, I had high hopes when referred to Imperial. What really annoyed me was that a deliberately false report was sent to my GP giving the impression I had no desire to come off hormone when it was me pressing the doctor to help me do so. In this case the doctor throws patients off T3 regardless and reports back that they are doing fine. I smelt a rat early on and so put everything in writing and got it on my GP record.
If any other members have been “processed” through this “T3 withdrawal clinic “ you might also wish to write and complain with detailed symptoms and results
You are correct I didn't know what the situation was at all - I was told by the consultant he was sending me to an endocrinologist who would help me with my complex thyroid issues.
it would help if anyone with these sorts of issues sent a brief email to ICHC-tr.Complaints@nhs.net . It doesn't have to be a formal complaint, just a note to let them know this is going on.
So are these ICBs up and running? I have found no evidence of this yet. I contacted the GMC about another scenario and was told they could not do anything about it because the endo was anonymously posting under the BTA (a charity). It’s like a maze trying to get the correct place to complain. Another layer of ‘protection’ for these people who are practising in plain sight. They really do practise above the law of the land.
What's in a name? A CCG by any other name would smell as rotten.
Some CCGs have switched over to being ICBs I don't know if all have. I don't know if there's any difference, seems like a rebranding exercise to throw us off the scent.
Yes at best a rebranding exercise. Just what the NHS in peril needs. I see too these ICBs are being set up to involve local councils. God local councils also work at the speed of snails. Is there any hope? Anyway just to congratulate you on your knowledgable efforts. Please keep going.
GP said they are exactly the same as old ccgG just working under another name and have higher paid staff that are Drs, but still about cost cutting
I recently made a complaint about them refusing me a drug Not thyroid related and the letter I received back was from a chief nursing officer in ICB ? WTF , I cant see why they have a nursing officer dealing with patients as they normally in charge of nurses not the public, so seems just over paying more staff that are clueless on what the public actually need to get well And The ICB are still all about keeping costs down and cut backs and do not give a hoot to what patient needs are.. , The National Insurance payments we all have paid extra for in NHS England has only gone to get more useless management in and nothing has gone to patient level, which is wrong they needed less useless management and more money for patients.. NHS Scotland has not done this and used the money on the patients. Im notsuree about Wales and Ireland.
I remember Boris Johnson saying he wouldnt increase taxes on NHS as if everyone paid 1p more they would have too much money.. ? So why the NHS is in such a mess is mystery only can be a management problem, they need to sack them all and get people who know whats what in the NHS, and what is needed, but they put those in positions just because they get a degree , it doesnt work and its the management that have been desstriying the NHS for years they are ruining the NHS to a point of collapse,...
ICB AKA cCG same thing they are delaying patients getting operations and frustrating the surgeons who say they are needed, The IICB even more so now than before takes hours making a decision should they operate or not and then say patient can be operated on, The surgeons are like thats what we said hours ago.. some patients sent home because CCG / ICB then later to return to hospital at a dangerous state..and even then left A & E for hours again CCG involved, The surgeon I know has been going down down to A & E to get the worst cases operated on and over rides ICB as he has a duty to care.. most are too scared to stand up to them, so the operating theatres are not busy its the ICB delaying it all, its quite unbelievable ,whats going on at all levels is complete madness,
Us people would not normally here of things at this level, I do because I know a surgeon. so you can bet its happening in all departments at hospitals..
The thing is they dont care as have not taken an oath to do no harm and the comeback will be at the Drs
Some Drs need reminding this as are listening to ICB who do not care about patients just in saving money..
On the otherside The management will agree to paying to make receptions like hotel rooms and statues outside a hospital to make it look good,
As a patient I would rather see a basic and sterile looking hospital like the old nightingale hospitals basic but did its job getting people well and patients wanted to get out when they felt better, not sit bed blocking as dont wsant to go home like they do now as far to comfortable for them,, far to hot a breeding ground to rapidly spread likes of MHRA and other things
Its not the NHS we used to know, ICB and all management all are on inflated wages its all Pete tong wrong..
How we can speak out on it all that, I do not know but it is our NHS not the useless managements
It’s a long time since I worked in the NHS but I saw many things that doctors did that were ‘hindering’ through Empire building and arrogance. The two states (the one you mention and mine) can exist together in the same space and I am certain they do. I did notice that many nurses promoted to management positions were particularly useless. In many ways they were even worse with power issues. Little tin pot Hitlers they were called. I think this might be because they had spent their careers being told what to do and had no real idea what management entailed but were going to go on treating everyone, the way they felt they had been treated. Promoted with no management training - a favourite method of promotion in the NHS. Again obviously not all fell into that category. Many ‘matrons’ had to be obeyed but they were often very knowledgable.
‘Civilian managers’ were not respected at all. They had up to date management training but not enough experience in the NHS to overcome the power of the consultants. I have no idea how that is playing out now but really it used to be that ‘no-one was playing nice’. It was a shambles and no reason to think it has improved
I just watched an item on Jeremy Vine this morning about “Should all GPs be working full time?” Not once was it mentioned that as they are so highly paid they almost must take their pensions ‘early’ otherwise they have reached the maximum their pension schemes will allow. Therefore even GPs who do NOT want to give up work MUST! The only way they can continue is to leave, pick up their pensions and go back to work under a different kind of contract. Therefore (many) again working part time. They can partly handle their ‘pension pots’ by working less hours long before retiral. Hence many of them do. It’s human nature. Look after number one. If it’s more advantageous to them, they will do it. Your GP may not be returning to work post-retiral because he loves the work but just an opportunity to keep earning the equivalent of a full time wage. Many would wish for just such an opportunity. This should benefit from a ‘Think Tank’ examination. However no doubt the press are happy to run with their version of stories and the government may be choosing not to intervene. Who knows?
There are positions on Health Boards (don’t know what they might be called now) for members of the public and/or patients if you have the energy, which many of us on the forum unfortunately do not have.
What is wrong with the NHS is far from simple. It needs a whip hand and someone brave enough to be truly accountable. I say that with no conviction. It’s like a thousand or more small businesses each with their own cultures and habits trying to work together. Nigh on impossible. In a culture now where most people think mainly of themselves, it’s heartbreaking to see such a wonderful idea being brought to it’s knees.
Sorry I could go on about this a very long time and I am too old and knackered (at the moment) to do anything about it.
P.S. This has now been acknowledged publicly in the Chancellor’s recent budget statement. We shall see if it makes any difference to the outcome; which should mean effectively more GPs and more appointments for patients.
Well done Jim - I too wanted to do this about endo in a different hospital but my MP is rather reluctant to get involved.
I had moved endo's to the very hospital you mentioned two weeks ago so thanks for the heads up - I had a feeling the person I was seeing was not on 'our side' shall we say. If more of us did this we might move things on for others who are suffering so. It is my opinion that endocrinology are actually holding back the health of the nation - I finally got onto T4 after 15 years of suffering and renal issues and my renal function improved plus heart function etc. etc. - it is so wrong - I have tried and tried to get something done as 25 years ago I had this problem and yet 25 years later I am shocked to see that the same issues have not improved. When I finally got onto T3 it 'cured' a problem I had had for 16 years - fish odour syndrome - it went as soon as the metabolism sped up and the liver could convert the choline that was causing the problem into a harmless substance as happens with 'normal' people. I made sure I wrote to the consultant at St. Thomas' who could not find out why this horrible condition was occurring as it wasn't genetic - lovely lady - she did all she could to find out why - I wrote to her explaining what had happened and would she please take it up with endocrinology within her hospital to say that it was a lack of T3 as I wasn't converting T4 to T3. I hope this helped in some way - she did say in her reply ' I certainly will ensure that endocrinology are informed and thanked me for the information' . If you look at Long Covid symptoms and Thyroid UK list of symptoms they are virtually the same and it is well known that the thyroid inflames during Covid - disgusting - they are so behind in their knowledge skills - if I won the lottery it is the first thing I would do take that 'field' to court for not updating their research into the condition they are supposed to be 'experts in' - I know more than they do about the thyroid and so do most of the members on here. Onward and upward.
I think you should find out what the endo's approach to T3 prescribing is before you get too involved with them, preferably have it in writing or send them a friendly email thanking them for their willingness to prescribe.
I've posted about T4 and cancer. Interestingly it was some research into T3 and COVID that put me onto this. I can't remember the details now but there was something about COVID, the ACE2 enzyme and T4 binding to the Integrin αvβ3 Receptor that promotes the spread of COVID. A couple of studies were set up to see if T3 therapy would be effective in treating COVID. We now have vaccines and other good treatments so the research into using T3 is no longer needed.
Thankfully we have someone as knowledgable as yourself following all this and making use of it in a way that the more pedestrian of us are unable to do.
Re: your comment about endo’s approach. I wholeheartedly agree. Having gone down the private route, I still found I did not have a good experience - even although I got my prescription. It’s more complicated than just getting the prescription. What to expect if you need help post consultation. Even just wanting to ask a questions post consultation. TSH opinion etc. Cost of asking a question. I assumed more knowledge and availability of help from the endo (for my husbands sake more than my own). I expected it to be imperfect but it was worse than imperfect. More hurdles to cross.
Hi Jim, after shielding for nearly 3 years hardly going out - my hubby went to GP for a blood test and brought back Covid. I am a Lupus patient with adrenal insufficiency and a very complex endo problem. I immediately upped my steroid by 2 mg and instead of 3 day ruling I took the extra for the duration of the attack. Prior to doing this I was vomiting and unable to eat anything but thank goodness kept the steroid down - otherwise hospital time or home injection kit to be used - but I realised the vomiting was probably the adrenals screaming for help that's when I upped the dosage. I also immediately took an antibiotic I have as rescues for me to use when urgent help needed (I have had Sepsis twice with a UTI when I get ill with an immune problem it is dangerous for me that the UTI will kick off again and could result in Sepsis again). I was not only using the antibiotic for help with the possibility of the UTI coming to the fore again but because I could feel my chest was going to be a problem. I took Vitamin C (600mg) and zinc lozenges every day and my usual vitamins and slightly upped my T4 liquid to compensate for the thyroid dropping in illness over the duration - and my T3 as per usual. It wasn't easy but I got through it and if I hadn't been on T3 I don't think I would have got through it - I bought a portable oxygen cylinder used by runners when they get breathless £17.00 from Amazon but although I got a little bit breathless after having a bath I didn't need to use it - but it was there to give me confidence. I did not lie in bed at all but got up and was on my computer as per usual although coughing and spluttering but I certainly was not flu like ill although the first three days was aching all over which was kept at bay by paracetamol after that it stopped. The moral of the story is that yes T3 helped a lot and by the way - I had not had the jab !!!
Off topic and we must avoid any discussions on COVID but an oximeter is very cheap to buy, can be used to check your pulse and most important let you know if your blood oxygen levels are falling due to COVID or any chest infection.
This is interesting. I too had a symptom for at least twenty five years. Very debilitating vasospastic angina (coronary spasm was the name given at the time) which has become almost non existent since commencing levo nearly two years ago. I am still having a wee bit trouble starting T3 but I am optimistic. I reported improvement to GP (whilst I was still communicating with them) foolishly thinking this might be important for other patients. He could not have been less interested. Thank you for posting your info.
So pleased to hear that you are feeling better but so sad you had to suffer so. I think it is about time a 'class legal action' is undertaken - I tried to do this years ago and went to Lincoln's Inn Field to see a top barrister who was willing to take on my case but I declined as I wanted it to be a group action to help others - however, he said if I won the case it would be a precedent and things would change for others.
He also pointed out whether I could take the stress as it could take years - I was very ill at that time - together with the need for their team to request my medical records which could alert the medical team something might be up and then I could get suddenly 'discharged' from their clinic. It was unusual to request medical records in those days unlike today. Behind the scenes I am still fighting for you all writing all over the place to suggest the problem could be thyroid related. I wonder how many heart specialists know that an enlarged heart could be thyroid - my late Mother had an enlarged heart that went back down to normal when put on T4 - they are holding back medicine and I do everything I can to bring this to the attention of other medical areas when I see the opportunity. I had renal problems and my renal consultant was astonished how the function improved and he did everything he could to get me on thyroid hormone but to no avail I had to go to Belgium. I was one of the unlucky people who had sub clinical blood tests which I now know the reason for.
I am so glad you too are working away doing things behind the scenes. I have previously been involved in a ‘class action’ (Dalkon Shield) many years ago. It took years to sort it out and I have little desire to repeat it; especially when I am not yet Ok. All my concentration is on getting well. It’s so much harder than it should be. Obviously most people on this forum are attempting the same. It’s in the nature of this disease to feel like this. It’s especially hard for us to pursue all this nonsense. These people are getting away with …..! Really it’s criminal.
Jim by sheer fluke I was prescribed T3 by my GP and I think he would fight tooth and nail to keep me on it knowing how I have suffered - he is one of the good ones !
Just read the string - the more I read the worse it gets, but you have 'the smarts' to progress this. The inertia is beyond acceptable. However from the little I have read in Research Papers thus far there does seem to have been some pretty crazy assumptions and extrapolations in the medical science underpinning the current paradigm. I started to read and just could not believe...... It is still early days in the research - but wow - to say scientific rigor and medicine parted the ways could reasonably be considered an understatement.
I was at that talk. Toft has changed his view very considerably over the past few years (since he left the NHS). During the late 1990s and early 2000s as President of the BTA he persued excellent doctors such as Dr Gordon Skinner because they prescribed T3. I politely put this to him at the meeting, he didn't give any meaningful reply. My question is not included in the video, the sound was bad at the time. Dr Toft does seem much better now but he has to be held to account for the harm he did in the past.
I chased up my complaint today as I haven’t heard anything for a while.
“I realise this is a long and detailed process but could you give me a brief update on the progress so far. Also, have there been any interim measures introduced to protect patient safety and access to liothyronine?”.
Imperial have just replied to my complaint from 10 months ago (see below). I was told it would be looked into by a Patients Complaints Investigator but it seems that Prof Meeran is marking his own homework. This is unacceptable as the prime complaint is about dishonesty along with failing to monitor the patient and keep records. I won't cover the specifics but there have been additional dishonest statements since. Also note the video was taken down following a patient complaint not because it had the wrong context. Note when off liothyronine my blood test results were clearly not 'normal'.
I am considering further steps which are likely to include a complaint to the GMC probably with help from a solicitor (so I don't get fobbed off).
"I am writing further to the email sent 13 November 2022 where you raised concerns on behalf of
your constituent, Mr James Hxxx, about his care under Professor Karim Meeran in the Imperial
Centre for Endocrinology. I apologise for the long delay in providing this response. Since your email
there has been various direct correspondence between Mr Hxxx, Professor Meeran and our
complaints team to try to resolve Mr Hxxx’s concerns.
Professor Karim Meeran, consultant endocrinologist and head of our endocrinology service,
reviewed Mr Hxxx’s care in light of the concerns you raised. His review and conclusions have
been assured by the overall clinical lead for his division, director of medicine and integrated care,
Professor Frances Bowen.
Mr Hxxx wished to continue his liothyronine (T3) treatment on the NHS. According to NHS
England guidance, patients currently prescribed liothyronine for hypothyroidism should be
reviewed to consider switching to levothyroxine (T4) where clinically appropriate. Patients who are
currently obtaining supplies via private prescription or self-funding should not be offered NHS
prescribing unless they meet the criteria in this guidance. The guidance states “ a small proportion
of patients treated with levothyroxine continue to have symptoms despite adequate biochemical
correction. For these patients, oral liothyronine (triiodothyronine; L-T3) may be appropriate.”
When Mr Hxxx was seen by Professor Meeran he conducted blood tests. The results were
normal and did not support a diagnosis of hypothyroidism. Although it was clear that Mr Hxxx
did not have hypothyroidism, which meant it would not be appropriate to prescribe liothyronine,
Professor Meeran wanted to continue to support Mr Hxxx by helping him to withdraw from
liothyronine. Mr Hxxx explained he had attempted to withdraw from liothyronine previously but,
on each occasion, his symptoms returned. However, Prof Meeran is clear these symptoms are not
endocrine related and so he still did not support prescribing liothyronine.
We’re sorry that Professor Meeran did not communicate his conclusions effectively to Mr Hxxx.
Prof Meeran acknowledges he should have written to Mr Hxxx formally to clarify that his clinical investigations did not support further investigation or treatment and that Mr Hxxx would need
to be discharged back to his GP if he wanted to explore that through alternative routes.
Prompted by our investigations into the concerns you raised, Professor Meeran did send a letter
to Mr Hxxx on 3 February 2023 to set out his conclusions and recommendations. While this
was intended to provide clarity for Mr Hxxx, I am sorry the letter was not as sensitively worded
as it should have been and I have followed this up with Prof Meeran directly.
Specifically on the video you referenced in your letter, Professor Meeran explained this was a video
he used in a routine internal education session with consultants, junior doctors, nursing staff and
students to discuss medical issues and treatment for particular patient groups - in this case,
patients who do not use liothyronine appropriately. Following your letter, Professor Meeran took
the video offline as it did not have the context for a public audience but he has confirmed that its
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
And The ICB are still all about keeping costs down and cut backs and do not give a hoot to what patient needs are.. , The National Insurance payments we all have paid extra for in NHS England has only gone to get more useless management in and nothing has gone to patient level, which is wrong they needed less useless management and more money for patients.. NHS Scotland has not done this and used the money on the patients. Im notsuree about Wales and Ireland.
Liothyronine Prescribing Survey
'heads up' for patients in Lancashire and South Cumbria wanting a T3 trail ~ "Liothyronine for NEW patients" now allowed by LSCMMG Review.
