The response to my FOI request whatdotheyknow.com/request/... reveals that since June 2018 hospitals in North and West London have sent patients on liothyronine or requesting it to Prof Karim Meeran's 'liothyronine withdrawl clinic' at Charring Cross Hospital, part of Imperial Healthcare ICB.
Initially this clinic wasn't labelled a 'withdrawal' clinic, the title was amended after patients appeared to be misled. Some patients have been told they were being referred to a consultant who specialises in liothyronine therapy. This misinformation may simply be a wrong assumption on their doctor's behalf.
I've submitted a further FOI request to London NW Hospital trust for details of their liothyronine prescribing policy. Of course, such a policy would have little effect as they pass all their patients onto Prof Meeran's withdrawl clinic.
I get very confused with all these bodies administrating a few hospitals, a terrible waste of NHS money.
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jimh111
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" Withdrawal".....do they understand the possible devastating consequences of that proposal for some (many) patients.
Do they base this on the fact that body builders use T3 and conclude that any patients clinical need for T3 must, instead, be some form of addiction!
They are running around grasping at ideas based on unfounded opinions and throwing away money on people who are struggling to justify their pointless positions.
'A consultant who specialises in liothyronine therapy"...a rare creature!
I'm eternally grateful that the GPs in my Scottish practice are open minded enough to understand ( eventually) and accept my decision to self medicate. One noted that my self management is very good! It's not ideal but left to some of the practitioners let loose on the public I would probably be dead now.
As you say, decision making all goes back to an endo and if they toe the line and say " No" the patient is left struggling.
Thank goodness for this forum!
I make no apologies for my cynicism and intolerance...
Outstanding clinical practioner award: how do i rationalise withdrawal of liothyronine (T3) in a symptomatic tired, depressed and vulnerable patient with chronic fatigue syndrome or long COVID who may or may not have hypothyroidism?
Gee don't you people realize it's all a placebo effect? The guy is an a****** (I don't want admins to boot me off), probably misogynist also. Using a "happiness" scale to determine that someone doesn't need a medication is nuts.
On the other hand, it does point out the importance of tracking symptoms and articulating them in an objective manner. What does "tired" mean? Not enough sleep? "I'm tired" is what you tell you friends when you stayed up too late last night and you're not your usual perky self - it's not a medical diagnosis. To make a case "tired" needs to be objectively stated - "I fall asleep at work in the afternoon." "I'm unable to complete my daily home tasks." Then score it from 0 (never) to 5 (daily).
The known biomarkers of hypothyroidism should be tracked - high blood sugar, hyper cholesterol, high blood pressure – and changes when appropriate medications is added (or removed) tracked.
The minute a "doctor" says "the patient feels ..." instead of charting objective criteria s/he is playing psychologist, not practicing medicine.
Endocrinologists who pay attention to his tyrbpatuent feels get much better results than those that use biomarkers based on statistical models that may not apply to the patient. Too many of us have suffered because of this. It is absolutely vital for the doctor to know how you feel to treat you effectively. Those doctors who ignore this aspect are simply not prepared to learn more about the complexity of the illness and cover themselves by saying ‘your blood test results are fine, so we don’t need yo do anything’. They often don’t do comprehensive enough tests checking vitamin and mineral levels and don’t seem to know that any statistical model of what constitutes ‘normal’ has 95% probability or less of being correct. I say less, because, additionally, statistical models showing ‘normal’ and ‘not normal’ results can overlap! I learned about this on this forum pointing us to a research paper on the subject.
I understand what you're saying. but in the insurance obsessed health care in the US, doctors don't get reimbursed for how a patient "feels" and there are no diagnostic codes for how a patient "feels". They can code, prescribe and get reimbursed for objectively tracked symptoms, such as "now able to sleep through night", "daytime fatigue reduced from "always" to "rarely", or" A1c level now within normal limits after adding T3".
The real issue here is not so much a doctor with daft ideas but all of NW London hospital trusts taking advantage of his views to deny all their patients loithyronine. By not having a formal policy of denying liothyronine they can avoid complaints from patients or control by government bodies.
As is said i.e. '"Ignorance is Bliss" is so wrong when it comes to the treatment of those of us who have hypothyroidism. Many hypo patients are denied the thyroid hormones that restores their health and the above link seems 'set-up' by ignorant doctors who will not prescribe T3.
They should have their own thyroid glands removed so that they could actually find out the suffering some have to go through in order to get diagnosed as being hypothyroid Now that the cost has become affordable they're set upon insisting that T3 will not be prescribed..
They should have their own thyroid gland removed and see how they can function with no thyroid hormone replacement whatever.
We need more doctors who should be trained in the method that Dr Gordon Skinner and Dr Barry Peatfield had as junior doctors.
Both were loved by their patients who had confidence in these doctors and had their health restored . They also filled us with confidence that gave us hope. and we travelled the length and breadth of the country to do so.Their patients had nothing but praise for these doctors and they could diagnose us without the need of a blood test.
I'm old enough to remember how many GPs used to watch you as you walked into the surgery and started to diagnose by how you looked as you entered the room.
We're just numbers and tick box entries now to most of them. (Thankfully my GPs are a bit more old school.)
Hi. I’ve been a bodybuilder and never used T3. Ever. Did it all naturally. I wasn’t a professional being paid to bodybuild. It didn’t make me feel nice or good to read this stereotype. I’m fact it makes me feel like s@&@ that people have this attitude about the sport I chose to compete in 😞
They were made in general terms becase it is well known that some bodybuilders use T3. In fact there are questions posed by body builders on google asking for advice on it's use ...and articles written about this too
I have read that in body building circles, there is very mixed opinion about it's use.
I have no experience of, or, opinions about bodybuilding per se...but the use of T3 is out there for all to discover.
Those of us with thyroid disease who rely on T3 replacement to function are concerned by the creeping proposals to withdraw it from use. This is unwelcome ( terrifying for some) so naturally we are keen to discover what may have influenced this proposal ( even slightly) since withdrawal of T3 has the potential to ruin lives....or in extremis to end lives.
Apologies if I caused upset that was never my intention
hi. I don’t like statements that are “all” and embacing. People make a lot of assumptions about bodybuilding and their use of enhancing drugs. What u don’t hear about is other areas of athletic competition being accused of the same abuse of drugs. “Some” athletes do use drugs but not “all”.
In January 2021 I was referred by my GP to a private endocrinologist who immediately prescribed liothyronine with the comment “why on earth has it taken you so long to come and see me?” I felt an immediate benefit. 6 weeks later the same GP reviewed me and offered to see if he could prescribe for me on the NHS. He was very supportive. The next day out of the blue I got a phone call from a pharmacist who, with no introduction or preamble, said “ what we are going to do is refer you to an endocrinologist who will stop your T3 and…..” to which I replied “you will do no such thing”. She had never met me or discussed my problem and clearly did not know that I was seeing an endocrinologist.
This must be stopped.
Good luck with your fight. I recommend anyone in North or West London to investigate who you are being referred to before you go and refuse any such referral. It is dogma, pure and simple.
If further members wish to request information such as endocrinologist names please do so by private message, or by starting a new post & mention / “call out” members.
Do we know of a single person, member here or not, who has turned round and thanked the prof. for withdrawing liothyronine?
I think statistics are essential, here.
If 100% believe it was wrong, do less well, have returned to liothyronine (even if self-purchased), or whatever, then he and his clinic should be thoroughly investigated.
He says some have and I'm sure that's true. For example, Graves' patients often need liothyronine until their TSH picks up again and it makes sense to try and slowly come off liothyronine. The problem is the belief that all patients can come off liothyronine and all the NW London hospital trusts circumventing NICE guidelines by exploiting this endocrinologist.
I'd be surprised if the number of Graves patients who actually get liothyronine is anything above infinitesimal in this real world! (Though I very much understand your point.)
funny how they know when the decision was made and by who but they have no minutes of it....and can't tell you where to find them .... could they be any less helpful ?
Great work! My head is spinning with civil disobedience ideas, pro T3 leafleting, sit ins, banners attached to buildings opposite this practice. Patient complaints to the GMC who have been through ‘withdrawal’ it’s just awful 😞
I remember Dr Skinner's hearing at the GMC in Mancehster. There were a lot of us and they said they couldn't find a room for us to wait in. Two ladies sat down between the lifts and took out their flasks of tea and sandwiches - whilst all the doctors and solicitors were coming and going. The young people on reception went into a panic and found a nice room within minutes. Never mess with old ladies, you will lose.
Yes, women were said to be referred to by GMC staff as 'The Skinnerettes' - I responded to the GMC re Dr Skinner's Hearing with my name and in brackets (A Skinnerette) - these people, some doctors included, should not be let loose on a cockroach farm!
I was one who had consulted with both Dr. Gordon Skinner and Dr Barry Peatfield - both of whom were doctors who were sough out for a consultation and patients didn't mind travelling far and wide for the opportunity to do so and to have advice to relieve their clinical symptom and recover their health.
Both are now deceased but Dr Skinner's staff put together all of their scientific evidence over the years and hope to have it published but haven't yet found the money to do so.
Both doctors gave patients excellent advice and also gave the patients confidence that they could recover their health.
Both doctors were pursued by their organisation as if they were criminals instead of restoring the health of their patients.
Yes, I travelled to see Dr Skinner at Birmingham once, then Glasgow a couple of times. I was meant to see Dr Peatfield at Sheila Turner's house but he was coming up to Morpeth, Northumberland [closer to home] so, fortunately, I saw him there [one of his peripatetic trips :-)]. Lovely, Lovely Doctors... most importantly, knew their stuff!
These are doctors that were hounded BECAUSE they knew their stuff and patients trusted them AND saw improvements that the other doctors had/have no clue about. Tragic we're left with garbage.
The works of Dr John Lowe, Dr Mark Starr, Broda Barnes and more gave the opportunity to see another Thyroid World. We must never forget... worse still, my hometown, Newcastle upon Tyne, was right up there in the late 1880s with great work being done. Take a Look Now!
maybe ‘Dr’ Meeran should put himself in thyroid blockers and see how pleasant he finds T3 ‘withdrawal’ The NHS is a joke and this man is breaking his Hippocratic oath but is probably too arrogant to ever realise.
WOW what an incredibly arrogant man. His bio is ridiculous from ‘our’ perspective. Terrifying that his brand of teaching and educating new doctors is his aim.
For those interested in knowing more about the Professor's knowledge of Thyroid disease, check his Research history over the past 30 or so years. Diabetes? Yes. Thyroid? I think maybe 1 or 2 studies back in the 90s.After he sent his 'edict' (that's his word) to doctors forbidding GPs prescribing liothyronine, I decided to see him privately. (After all, the Edict forbade referral to anyone else and my GP was too scared to ignore it.) Only he could approve liothyronine use. (The price was extremely high and the Government needed a solution)
In our meeting, I asked him about his Research history (I had checked it online). He was shocked by my question. Are patients expected to be ignorant?
His answer? He waved his hand towards the door and replied vaguely that 'they are doing something out there'. My second appointment almost did not happen. He had forgotten (he did not have a secretary). He was finally found and given a room to use.
On my first visit, he seemed very surprised that I knew about the need for Vit D. In response to his remark that that high doses were difficult to find, i gave him the name of the brand i used then. He wrote it down and was grateful.
He did not display any understanding of standard Research Method - where you put some subjects on placebo and others on the drug being tested or assessed. He wanted me to give him my liothyronine tablets. He planned to mix them up with placebo tablets and I was to see whether I noticed any difference
Needless to say, I was appalled by this display of ignorance. Or was it that he thought that I, a mere patient, would not realise his ignorance. I refused.
He referred me for a Bone Density test - but St Mary's did not receive the referral. When I eventually had one some months later, my result was very good, as I expected (since the 1990s I have had my bone density checked every few years).
After my appointments he sent me a few emails including suggesting a further meeting. I stopped replying.
Perhaps he found that there were not enough patients willing to agree with his views. Was he having difficulty establishing a Private Practice? By defining liothyronine as a drug of dependence for which Withdrawal treatment is needed, he may yet succeed in achieving his ambitions.
It's a shame the NHS does not treat depression medication as drugs of dependence and set up a withdrawal clinic for patients. With proper diagnosis, they may find that many of these patients really have thyroid disease and through trial and error treatment addressing T3 and T4 issues plus vitamins, the depressive symptoms are relieved.
(One other point. My usual private Endocrinologist at the time also stopped prescribing liothyronine - he could not risk losing his NHS work. On my last appointment with him, he told me that some of his colleagues had mentioned they were obtaining the medication from Germany. Recently I have read in this Forum that he is again prescribing liothyronine.)
Oh dear. He does seem to have a fragmented knowledge of thyroid hormone action. The really bad issue as I see it is the hospital trusts ganging together and plotting to send all patients to an endocrinologist who has the most extreme views about liothyronine.
You have the right to drugs and treatments that have been recommended by NICE for use in the NHS, if your doctor says they are clinically appropriate for you.You have the right to expect local decisions on funding of other drugs and treatments to be made rationally following a proper consideration of the evidence. If the local NHS decides not to fund a drug or treatment you and your doctor feel would be right for you, they will explain that decision to you.
Reading a book called “The Empire at Home” shows the method of how the NHS was set up - how it came about. In fact it is run remarkably similarly to that of the armed forces. Rules, obedience and no questions allowed. In many ways it is the complete antithesis of what we understand about living in a free country. I worked in the NHS in the nineties and can confirm this whole attitude when working there. I always think that doctors (and those chosen to study medicine) are mostly a definite ‘type’. That ‘type’ being individuals who can cram lots of ‘facts’. I do not mean to be disrespectful because of course there are doctors working in the NHS genuinely trying to do a good job. However, true comprehension of what one is attempting with health issues is of vital importance. Being able to parrot facts does not equate understanding. Real knowledge and understanding (including up to date research) are being replaced by tick boxes and protocols, which are ignored when deemed irrelevant. No questions allowed!
There are fields of work in the wider world which are ‘known’ to either, not be sought after careers or, known to be careers where individuals less able can hide. Two that immediately come to mind are personnel and administrators putting people out of business. Personnel is almost completely occupied by women (doing the real work) but often a solitary man at the top. Putting companies out of business is soul destroying and no accountant wants to work there. I get the impression more and more that Endocrinology/Thyroid is the medical equivalent. Looking at this guy’s bio demonstrates an enormous ego with very little to back it up. However he is the correct fit for chasing vulnerable patients off their T3. The rest of his colleagues will have helped push him into this situation (relieving themselves of this burden) and in his arrogance he won’t have a clue.
He is arrogant and believes himself to be superior to others - even, I suspect, the medical researchers on his team He is ambitious. I think we all know of people who are narcissistic.
When it comes to thyroid hormones, I think there's a big problem with the term 'withdrawal'. If I was referred to this clinic, I'm quite sure the name alone would send me running away at the speed of light (which of course I would be able to do, due to being addicted to liothyronine! 😉 ). The wiki article for drug withdrawal is indicative of how most probably interpret the word, and there's not one mention of thyroid hormones in it. en.wikipedia.org/wiki/Drug_...
If we need to eat less in order to lose weight, do we get sent to a 'food withdrawal' clinic? No I don't think so. We might get sent to a dietician, a weight loss clinic, an eating disorder clinic or whatever. But not a food withdrawal clinic.
In the past doctors in the UK and the USA have equated T3 with heroin or cocaine or speed, and claimed women wanted T3 because it helps them to get through their housework. The misogyny is just jaw dropping.
It's written in a very repetitive and very annoying style, but the content is an example of what some of us are up against. It hasn't been updated or added to for a long time.
...
Regarding getting T3 banned as a controlled drug, there are probably a lot of doctors who want to ban it.
DHEA has been banned in the UK (it's a Class C drug), for example, which is created by the body and is one of the most abundant steroid hormones in the body. Note that in the USA DHEA is a dietary supplement which can be bought over the counter.
As I see it the problem is that they just do not understand T3 ...nor see the need to understand it.
That lack of knowledge and the unfounded scaremongering attached to T3 causes them to fear it
On that basis all they can envisage is being responsible for a dead body because the medication they have provided is perceived as dangerous.
With that combination of lack of knowledge and fear there is little possibility that T3 will be used to best effect any time soon.
Education is key....but that education must be based on fact not, as appears to be the case, on unfounded opinion.
That opinion has been formed over the last 50 years or so and is now the basis of what med students are taught.
The medics who knew better were hounded by those in power.
The decision makers responsible for those guidelines (though they sound more like rules carved into granite) may face a sudden fall from grace if their established methods were shown to be wrong....." can't have that chaps!"
How many patients have died from taking T3 and had that noted on a death certificate? Someone here once checked and I think the answer was none!
I'm sorry, I'm ranting again but as someone who depends on a supraphysiological dose of T3 to function, and I'm clearly not alone, then this drivel causes a red mist to descend.
I'm fortunate I can work round the rubbish spewed out to patients ( thanks to this forum) but for the many who are at the mercy of medics like this I despair.
"WIthdrawn"... withdraw their registration!
I wish there was an immediate solution....suggestions on a post card anyone!
This is just my opinion!
To all those working hard to change things, including you
Why bother producing T3 if you're not going to push its' use. That's the part I don't get in all this.
Why aren't drug companies pushing it? A LOT of people have diagnosed hypothyroidism either autoimmune or non-autoimmune.
Many thousands more are undiagnosed.
Now if you're not too unwell, you can feasibly do without levo for a long time. My neighbour is walking around perfectly well, working full time and managing the community garden with a TSH of more than 10. She knows how bad it is, but as she believes it is not unduly affecting her, she goes to a naturopath every few months and believes in dietary control. I myself was undiagnosed for decades and was able to ignore many symptoms until my adrenals couldn't cope anymore and my HPA axis collapsed.
Some people on levo wean themselves off it and opt for 'natural cures'
In contrast a person who needs lio is very unlikely to not ever need it. So why isn't it being pushed more?
If hormone level is low the thyroid will ramp up T3 production for as long as it can to keep the body going....meanwhile the thyroid is slowly failing.
Eventually hormone replacement will be required when the thyroid can no longer cope.
We all need T3 to function whether it comes from the thyroid, from T4 to T3 conversion or from exogenous T3.
Many medics seem to think that the body produces all the T3 we need so there is no need to prescribe it. For most patients this is true but the cohort who do not respond to Levo ( for whatever reason) require T3.....and science proves this
T3 is not the panacea of all ills as some people think, but for those who need, it it is essential to their well being...and in extremis to their life.
If cellular T3 falls too low the body will start to shut down.
It shouldn't need to be " pushed" any more than say insulin for diabetics....it should be used with understanding and care.
This proposal to " withdraw" T3 indicates neither.
When I say 'pushed', I mean promoted as beneficial in the same other drugs are. Ultimately big pharma is about money, and it doesn't make sense to not promote T3 in the same way T4 is. I don't mean to suggest it should be prescribed in a cavalier way or without expertise.
And there opinions that levo only doesn't lead to good health outcomes in the long-term and that no one one should be on mono-therapy, though of course that is a controversial opinion.
Probably something to do with the company fined for ‘legally’ maneuvering a way around the rules to make an absolute fortune. The NHS shamed itself in this debacle, their procurers not noticing/doing anything about the price rise and then instead of dealing with it, just stopped prescriptions. Why wouldn’t they just overlook the most vulnerable part of the whole transaction - the patient? It’s a truly disgusting story.
I read about this here and in the newspapers, even my dentist was aware of the scandal. Absolutely disgraceful, and yes probably part of the reason for the reluctance to even acknowledge T3 as a possibility for treatment.
I think women are particularly prone to this behaviour. There are only two likely outcomes of complaining about symptoms of hypothyroidism (when tests are considered normal). Mental illness and it’s our own fault. Even post diagnosis we still hear this refrain. We soldier on because we do not want either (or both) labels. Something pretty drastic really needs to be done to shake up medics.
They seemed to understand T3 well enough when I was diagnosed with Graves in 1972, and until 2010, when things went wrong for me, FT3 was always tested, along with FT4 and TSH, Cholesterol and HbA1c. Counting the cost and laziness seems to have taken place of good doctoring!
Counting the cost and laziness seems to have taken place of good doctoring!
I absolutely agree... but much of that is the consequence of poor education, reduced understanding (sometimes with a dollop of arrogance) and a touch of fear. All of which are undoubtedly part and parcel of the whole debacle.
Cost, I'd suggest, was driven by Big Pharma greed!
Older medics did have a better knowledge of thyroid treatment..and the importance of clinical evaluation.
They were taught differently.
Before testing that was how it had to be....as you say " good doctoring"
New ways are not always better ways. And, we are now seeing the evidence....big time!
Yes, FT3 was also routinely tested (by my surgery) until 2000... then the rot began. They thought TSH sufficed....it doesn't and we now see the consequences.
Now we are treated like machines that can be calibrated to a set point.....they overlook the fact that we are human and as such are all very different with different needs.
This is how I knew I was hypothyroid (sort of). In a desperate attempt to get some exercise I took swimming lessons. One day the instructor got us to float on our face and see how long we could hold our breath. The best so far was a young man who did 26 seconds. I did 55 seconds without really trying, I only came up because I was worried people would think I was showing off. The instructor said "I've only had one student who could last longer and he had something wrong with his glands". This made me determined to get treated and I discovered the wonderful Dr Skinner.
WoW! Well there ya go, a swimming instructor had more idea than... 🏊♂️! Indeed, Dr Skinner was a wonderful man and his memory lives on. Every so often I recall 'doing a jig' with him in his Glasgow office, using the most unflattering words about the English 😅😁 [establishment] and I still laugh so fondly at his wonderful humour.
What a shame to have not had opportunity to meet this doctor, or Dr Peatfield. Big shame. Did neither of them ever train other doctors in their methods? I imagine a clinic under either of their names, with doctors working under the same philosophy and using the same methods would have been amazing.
Of course there are private endos doing similar. And Dr Myhill is amazing too.
Sadly, both of them were hounded by their own and, in that kind of climate, word gets around with lovely people being demonized for nothing other than those small-minded, vindictive... I'll leave it there. You'll most likely know the info below and I do hope it's accurate.
Dr P relinquished his medical license (he too was hypothyroid, with adrenal issues - along with the stress of fighting off dunces... likely too much and hampering his great work!?), for him to practice privately. He was accomplished in this field, following some of the Hypothyroid Greats. I simply don't know where I'd be without his May 2010 T3 advice, alerting me that Armour wouldn't be enough and "You'll need T3 for life". How accurate he was and to this day my appreciation remains. xox
Dr S was hounded by the GMC - some say 'to death' - what a loss to hypothyroidism and to those known to him. People seem not to get that 'they simply don't care', other than 'being right' [sure sign of a fool!]. Dr S was a stalwart and, after seven years of my being hypothyroid - such obvious signs/symptoms and my gallery of photos say it all - with GPs ignoring even their test #s + endos... say no more, without his clear Feb 2010 diagnosis... I've no idea where I'd be now. Things haven't been great, but I count myself lucky to be alive. My G-Grandmother [before I was born] died [undiagnosed] being so full of fluid she filled a 2-seater sofa, yet having lived through rationing, some still going on at the time of her death, of 'Myxedema Madness', yet said to have dementia. Thyroid issues in family... they don't want to know... any of it.
Without great, smart and compassionate doctors who are 'with us', we're doomed. This is all tragic and becoming increasingly so. Take care of yourself. xox
Thank you for sharing Linda, It's terrible. I think it's wicked. I won't say more on the forum or I'll be branded a conspiracy theorist but I find the hounding of true doctors like this cannot be a mere coincidence. We have a system that isn't focused on true wellness.
I feel so sorry for your Great Grandmother, I can't imagine the physical pain and the mental torture. Poor lady.
I have experienced feeling suicidal on levothyroxine mono-therapy it really affects me mentally in a profound way and very quickly within just a few days of taking it the clouds start to descend. It's beyond reason. So I cannot imagine what your gran went through, with the nutrient deficit of rationing to boot. Awful.
Oh, it's no coincidence - Gordon Skinner was treated appallingly by some half-baked charlatans... when, for his patients, he was a Prince 👑 Among Pigs 🐽! No, I don't get into 'conspiracy' or such 'theories', yet we know what we know.
Yes, it seems almost as if 'wellness' is some utopian dream-like state that we ought not to anticipate or strive for!? How many visits to hospitals could have been avoided IF adequate, appropriate thyroid treatment was given?
Thank you - it was a long time ago - yet this continues to date. Sometimes I think about how dreadful it must have been for her, BUT in this 21st C... look at the parlous state of endocrinology, right now? How many people carrying excess weight, often hypothyroid, can't shift it? There are many fools in medicine but, of course, there are excellent doctors... sadly, not in this field.
Wow - sad to hear that - and there are soooo many people in this mess. I just couldn't tolerate 'straight T4', made me ill. Armour had just enough T3 to begin to take the edge off, but the T4 was still too much... yet I was able to cobble my health together for a while.
I've tried - we need a 'Patient Union' - to deal with these slackers, who disregard patients with their contempt! 👽👺🤡🤠
Completely agree with the need for a patient union! All we have is PALS I had trouble with Armour too. I realised a few months ago the T3 has to be significantly high enough to ameliorate (?) The effects of the T4 or I can't tolerate the T4 at all.
Wow - interesting needing more T3 re affects of T4 - considered stopping T4? I take T3 alone - used to have a small amount of Armour with it, until nutty endo 'intermeddled', deciding that I'd never been hypothyroid in any event [him not approving of Dr S] some 5+ years of the NHS, via GP, funding my imported Armour. Only went to see this person who was touting himself around the EU as 'a good guy' and my developing 'freezing shins/punch drunk/stumbling and uncoordinated'; his solution was to UN_diagnose me and recommend Armour be removed from my repeat prescriptions. Indeed, Patient Union... scare the 💩 out of these cowards!
Oh my god Linda what a steaming crock of 💩 for real! I hope you didn't pay this guy! That's among the worst I've heard, to have your record and testimony of symptoms dismissed, and your well-established Armour prescription withdrawn without thought of what that would do to you physically!!😢
It's awful. Mind you, I too have wasted good money I don't have on a few duds. I had an experience recently, where I paid nearly £500 pounds to a private doctor which was a total waste of money. I didn't go to see him about hypothyroidism even, but believed my years of sub-optimal treatment had caused secondary immune issues.
Well, he felt it prudent to inform me that as long as my levothyroxine treatment had put me 'averagely within the range' my treatment a few years ago would have been adequate, and my doseage of levo (100mcg) would have been 'at the typical level at which symptoms are resolved' and so none of the profound health issues I had experienced when on mono-therapy would have had anything to do with being hypothyroid, as I would have been 'well' at that point. I mean the man never met me at that time, but still feels he could tell me I was well treated.
I had no other choice but to be quiet after that and nod my head in faux acceptance. As he was a part-time NHS consult, I couldn't chance him sending my notes to my GP. I didn't mention taking T3. I've already had my levo reduced and stopped in the past for daring to raise it a mere 25mcg myself and didn't want to risk that again.
He didn't even tell me anything about the issues I did go to see him for.
I kick myself for wasting that money, the last bit of my wellness fund. I can't afford to see anymore consultants.
I didn't explain well about the T4. It's not that adding T3 stops the Levo from working but if you take enough T3 in a higher doseage, ratio wise than in NDT, it seems to counteract the side effects of taking levo. If you're sensitive to it, especially the adrenal crashes.
I tried T3 only, but although I felt miles better than when on T4 only, I was weak on it and had poor muscle tone. I could think clearer but not as quickly. I realised I need some T4. I think my body still likes taking up T3 through conversion for some reason. (caveat I was on a certain brand T3 at that time and have now switched to another, and possibly going T3 mono with this new brand would work out better)
I currently take (50mcg T4 + 12.5mcg T3) in morning. (12.5mcg T3) only in the afternoon, and another (50mcg or 25mcg T4 + 12.5mcg T3) in the evening. Sometimes add in another 6.5ish T3 just before bed.
I am ill from my other health issues, but seeing a real improvement in my hypo symptoms. It requires tweaking and I am debating adding a quarter or half NDT for that something 'extra' it gives you (I bought a T2 supplement which works, but left me with worsening insomnia so I knocked that on the head) but I'm trying to get away from the dependence on the NDT due to the expense and the fear of it getting withdrawn or not purchasable. The current situation is beyond ridiculous and uncertain with BP trying to actually get it 'regulated out of existence' the nerve!
So yes sometimes it's tweaking until what feels right. I resent having to be in this position where I'm poor and sick and have to negotiate all this for myself. Because of this it's taken years of experimenting. A patient union is definitely what I need, what we all need, when I can't fight through the system. Relatives say: write and complain to various bodies!! See (yet another) doctor.
I don't have the energy. Please... I just want to be able to clean my kitchen and go out once in a while,without having to lie down afterwards. I agree total cowards all of these orthodoxy wedded, ego-worshipping...people
That is just so awful for you - so much, too much, going on - worst still, lack of appropriate treatment/medical care - shocking and having to keep back information due to what they may do! How many of us are going through something like this - variations on a theme - with endos £$£ engaged to deal with such matters for patients? You and many more of us having to work it all out for ourselves; some kind of healthcare, eh? Yes, this situation now seems to be worsening... just when many of us thought it couldn't get any worse, both for patients AND for the likely small number of doctors not wanting to follow this appalling garbage.
Fortunately, I only paid Drs S & P [well, other doctors on health-related issues, likely due to long untreated hypothyroidism] who were less than the 'private-come-NHS' guys and worth every single penny. Fortunately, I'd taken Armour right down, relying on T3 - but I still would have continued taking it, but for the power-crazed, spite-ridden schoolboy. Even the GP didn't state in the referral: 'Freezing shins/punch-drunk/stumbling/uncoordinated' because, despite the surgery prescribing me Armour - knowing I used T3 - 'HE DIDN'T AGREE' with it! Those new, Jan 2015, complaints only changed, [see * below], when I upped my T3 back to where it had been before the endo recommended my stopping it entirely! What a freak AND BIGGER FREAK ME FOR TRYING TO SHOW WILLING... I got down from 75 mcg winter - 62.5 in summer - down to 37.5 mcg and, obviously, it all got worse, with me left to pick up the pieces.
* Due to more than one heart issue [beginning 2003, 2007 and dx'ed] yet thyroid issues ignored out of hande - I was too concerned re heart to go back up again to 75 mcg, having done so well from 2011 [when starting to use T3, I left it a while... never wanting to take ANY hormones]. By 2022, having become increasingly colder - every morning < 35 C - for years sleeping fully clothed, with multiple - ludicrous amounts - of bedding, plus an electric over-blanket left on all night - DURING THAT HEATWAVE - so I just took the T3 up - not caring anymore what might happen - to where it had been in summer 2015, then added up to the winter level. Fixed for months... it's back again now and I guess the only solution is to carefully increase - checking my vitals etc.
Yes, those who've never experienced or can even imagine anything like this - with the best will - are sure to consider the 'normal' routes for redress... there are NONE! Absolutely, a Patient Union willing to stand up to these arrogant [aka ignorant] bully-boys could not be needed more in this 21st C. Wow!
Oh Linda it is so bad. Would any such incompetence be permitted in any other branch of medicine?
I can relate totally to the heaped duvets and sleeping fully clothed. I first went to my GP at 18 years old explaining I was sleeping under 3 duvets in spring and beyond freezing in winter with sore throat that went on for months l Dismissed, dismissed, dismissed! Another nearly 20 years it took to be finally diagnosed
Yes there are no avenues of redress, I try to explain this to people to no avail. They really don't believe it.
So sorry about your heart issues, so many of us develop these secondary chronic health issues. It comes from jot being treated in the first place. I hope you can get your meds up to the right level, thanks for the encouragement xx❤️
No, I'm pretty sure this level of incompetence wouldn't be tolerated, well CFS/ME - those pesky chronic issues - that are so harmful to those with them. Yes, I know, nobody seems to get what this is like... until it's them, then they squeal from the rooftops! At least on here we all know how at least some of it feels.
Oh, thank you - and to you also - very best to you and keep on working towards a better outcome. I've done everything I can health-wise - my heart I've learned to live with and I'm in great shape, especially from late August 2022 when I upped my T3 back to where it had been. I'm likely to take it up a little more again - to higher than before - yet being careful, with the words of the great doctors in our ears - I/we know what to do via them. I know, I'd never previously suffered THAT level of 'freeze'... hypothyroid 'cold' but never like that - oh my, so you'll know what it's like!? Yup, dismissed, dismissed, dismissed! Even went to GP in 2022 heatwave wearing the layers of clothes x 2 trousers, thick socks etc... to let him see that no one could withstand all of those clothes without 'breaking even a sweat' during a heatwave...!?
So, feeling great but, wait for it, I had cataract surgery mid-Nov. 2022 = great but was neither asked if any known 'drug reactions' or told what was being prescribed... you should see the state of my inner ankles = dark red as if burned + an earlobe that was bright red and huge + neck/ hands in a mess. Still, this is ongoing. Beginning to wonder if 'Witchdoctors' might be able to help more!? xox
After Dr Skinner's death his staff were so shocked as he died at work.
Later on his staff collated all of their 'research' and wanted it to be published.
They stated it would change many attitudes but they needed sufficient mones to publish. I don't know how long that would be but assume they haven't got the optimum monies they hoped.
I was really privileged to consult with both Dr Skinner and Dr Peatfield and both were excellent and understanding and kind about anything to do with the thyroid gland.
They could restore our health. The following link is self-explanatory and another life saved.
There is a study into Dr Skinner's patients and T3 which is funded by patients and the BTF. Progress is very slow, tied up with all the formal processes of conducting a study which I believe are near completion. The good news is the study is ongoing.
What is the connection/science between being able to hold your breath under water and being Hypo ? As a teenager - and beyond - swimming under water came easily ! Even now I can swim several strokes with head immersed - perhaps I need more T3 !!??!!
Until recently it wasn't titled 'liothyronine withdrawal clinic', certainly not when I was referred. Nor was I given any indication that continuing liothyronine wasn't an option. I said I wanted to try to come off liothyronine with the help of a TRH stimulation test which sometimes restores TSH secretion. This was agreed to but after six months of writing to a black hole it was then refused.
Perhaps I'm just being mischievous here! Send Meeran a good selection of the papers TUK hold. He won't read them of course, but not doing so will show him up as a paid-up naysayer. Then anyone sent to him could say, "but haven't you read the papers that say liothyronine is often needed to supplement T4 for health?" No red face, I'm sure, but an airy wave of hands to show him up even further as not fit to do the job.
I don't believe doctors believe there is such a thing as 'can't tolerate T4' Some, some will concede that different brands are more tolerable for certain patients than others due to excipients.
Doctors lose patients all the time. It’s all in a day’s work. They have their own humorous way of covering that but at the moment the saying eludes me. Something about doctors burying their mistakes.
Apart from his dogmatic anti-T3 position, Meeran also says T4 should not be prescribed to subclinical patients until their TSH > 10. Apparently he's not aware that subclinical hypothyroidism is linked to increased cardiac risks. Nevertheless he seems to be highly regarded in the endocrinology community - what does this tell us about endocrinologists?
I had a series of TSH tests - over quite some months - each one higher than the one before. Though the first was (from memory) something like 2.1 - so not obviously elevated and quite possibly transient.
When plotted on a simple Excel graph, it was so obviously progressing. And it was that graph which ensured diagnosis and treatment.
I was never informed that hypothyroidism was a possibility. Otherwise I might have discovered it earlier. Mine was not checked for another 17 years. I was put in the CHD box. Markers from those annual tests never highlighted hypothyroidism although with hindsight the pattern is clear. Even now get chased to take statins!!! HYPOTHYROIDISM dear doctor.
In that sense, I was very lucky that I knew enough to ask for a TSH test - and do so repeatedly. My symptoms were not what a GP would ever have picked up on.
To continue: of doctors and Consultants. Not all the pharmacists had heard of liothyronine - 'what's that'? Among the doctors and Consultants, few knew of it including someone who is concentrating on pharmacology.What hope do we have?
I feel fortunate to have found an endocrinologist who is an independent thinker (both words are key). I found his name in the UK Thyroid list and chose him after much research and a very helpful response from a member of this forum. I see him privately once or twice a year. He is registered in France so EU prescriptions are not a problem, plus he keeps up to date on prices and suppliers here and in the EU.
I have been on T3 for 30 years. When GPs stopped prescribing 5/6? years ago I bought from Greece, Mexico etc. In January this year I read that GPs could prescribe again if a consultant advised so. After waiting months and months to get an appointment on NHS I gave up and went privately in January last year, the consultant reviewed my blood tests and gave me a physical examination and agreed I should be on T3 he also told me I didn't have a thyroid anymore - news to me.
I took his letter to my GP who agreed to prescribe T3 but after 6 months the senior doctor in the practice reviewed this and refused to prescribe anymore until I had seen the same consultant on the NHS. I was referred last September and still haven't been given a date for seeing him and I am back buying from Mexico. Incidentally, either the tablets from Mexico don't seem to be working or I have been suffering from severe fatigue since I went on to them but that's another subject.
"The use of TSH as the sole index of function led to erroneous interpretation and inappropriate reductions of thyroxine dosage. Only when the patient was taking half the correct thyroxine dose, and stopped taking thyroxine altogether for a short period, did the TSH rise, by which time the pituitary tumour had caused hydrocephalus severe enough to produce confusion ,incontinence and falls. Although the dose of thyroxine required to maintain the euthyroid state has been reported to fall with age, this would not have been a plausible explanation for the rapid decline in TSH seen in this patient. Had the free thyroxine also been measured, it might have prompted a search for other causes of a falling TSH during thyroxine replacement and led to diagnosis of the macroprolactinoma before the development of hydro-cephalus ."
Who wrote this ?
Prof K.M ~ in 2005 (Low TSH in a patient with primary hypothyroidism .... D Morganstein MA MRCP1/ N Mendoza MBBS FRCS2/ N Strickland FRCP FRCS3/ K Meeran MD FRCP journals.sagepub.com/doi/ep... )
How did he come to this astonishing discovery that TSH only can be misleading ?
like this:
"CASE HISTORY A woman of 66 was seen in the emergency department with a history of recurrent falls, urinary incontinence and new-onset confusion. She walked with a shuffling small-stepped gait and her abbreviated mental test score was 1 out of 10.10 years earlier she had been found to have primary hypothyroidism, TSH 12 mU/L (reference range 0.3–4.2),and on treatment with thyroxine 100mg daily the TSH had become normal. A year before the present episode her TSH was noted to have fallen to 0.49 mU/L, which in the absence of a free T4 was interpreted as suggesting that she was taking too high a dose of thyroxine. The dose was reduced to 75mg daily and three months later the TSH was1.26 mU/L. However, a further six months later the TSH had fallen to 0.2 mU/L and the thyroxine dose was once again reduced, to 50mg daily. CT of her head showed hydrocephalus and a large cystic lesion in the region of the pituitary. MRI confirmed these findings (Figure 1a,b). Her baseline pituitary hormonal profile showed a very high prolactin of 398 500 mU/L(5650). The TSH was now raised at 22.0 mU/L, with a free thyroxine of 9.6 pmol/L (9.0–26.0); she had not taken thyroxine for about two weeks because of her confusion. Further assessment revealed a follicle stimulating hormone of 0.4 IU/mL, undetectable luteinizing hormone, growth hormone 0.3 IU/L with an IGF-1 4.0 nmol/L (6.0–30.0),and cortisol 765 nmol/L. These results indicated partial hypopituitarism. Thyroid peroxidase antibodies were strongly positive. She had a bitemporal hemianopia on perimetry. She was restarted on thyroxine replacement...... "
How did i find this 'case study in incompetence ' ?
by searching his huge list of published papers using the word 'hypothyroid' to see how interested/ knowledgeable he is about thyroid patients.
There were only 2 results ~ this one ... and a paper about ramadan fasting / hypo ..... that's it
It's reassuring to feel like all of north London's T3 patients are in the hands of someone with such a great interest in them ~ NOT
Do you think it’s just possible he is the laughing stock amongst his colleagues? Talk about the blind leading the blind. Someone mentioned earlier giving him suppressing thyroid meds. It’s possibly the only way this t..t will ever be made to understand. He should be under lock and key. He is not fit for purpose. I still think in his outrageous arrogance he is believing his accolades (professor) and is being sent out to do a Sh1tty job that anyone with any sense is carefully avoiding. Shame on them all. Disgusting. What incredibly small minds.
To add to my comments from hospital. The Pharmacist who knew what liothyronine was had never heard of t4 + t3 treatment. He thought people on liothyronine were only on that.Incomplete knowledge can be dangerous. He shook his head when I mentioned combined treatment 'I've never heard of that'.
I've received a (very quick) response to my supplementary request:
Q: "I would like to know the Trusts' policy on prescribing oral liothyronine to thyroid patients. i.e. does the Trust allow initiation of liothyronine prescribing, or continuation of existing prescriptions for oral liothyronine. "
A: "No: in line with NHS England’s position on use of liothyronine. The only exception the Trust makes to this is short-term, in-patient use for myxoedema coma, which is a medical emergency. "
This is wrong, NHS England does allow for liothyronine prescribing for some patients. I had submitted a complaint to NW London Healthcare Trust which they rejected saying the issues should be dealt with by my complaint to Imperial Healthcare ICB. This isn't so, long story but I will be adding this latest response to my appeal to the Ombudsman after I receive a response from Imperial. NW London lied to me, telling me I was being referred to monitor my treatment and that all liothyronine prescribing was done by a specialist at Imperial.
I trust politicians and used car dealers more than I trust the NHS.
The thought that they want to remove T3 altogether is just like someone trying to stop me breathing. That would be a crime and they would be responsible and may be put in prison.
The difference for me when I was prescribed T3 after months on T4 and severe palpitations and awake most of the night trying to resolve them was that T3 calmed my whole body and I had no more awful symptoms. I feel healthy and symptom-free.
I have notcied that some people get cardiac problems on levothyroxine monotherapy, which at first sight seems surprising. I posted about T4 and cardiac issues some time ago healthunlocked.com/thyroidu... . I don't have much knowledge in this area and there is little research but it does seem T4 (not T3) has specific effects that some people may be more susceptible to.
Let us persuade whomsoever thought up that thought i.e. no T3 to be prescribed. Just let us persuade him/her to have their thyroid gland removed altogether and see how the will fair with no replacement.
Talk about a dysfunctional thyroid gland? why do the 'experts' know nothing about how T3 energises our empty T3 cells.????? We can then tick the box when our body is glad that we, finally - are taking a replacement that removes the symptoms.
That's easy - as they seem to be ignorant about how the thyroid gland works - cannot attempt to assist the patients to recover their health and their lives.
With LEVOTHYROXINE I felt absolutely awful and even to think was a problem. I couldn't sleep well either. I felt unwell during the day,
When prescribed T3 - it was miraculous for me and everything in my body reacted positively and I followed the advice of "Dr John Lowe," scientist and researcher and expert on restoring health of hypothyroid patient. I no longer have bad symptoms.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
At least on here we all know how at least some of it feels. 
BTA FINALLY PROVIDED A FORMAL RESPONSE TO NHS ENGLAND CONSULATION
Alternative to liothyronine sodium?????
