feature about T3 now
radio 5 live now: feature about T3 now - Thyroid UK
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Scazzoh
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Thank you I missed the start can you tell me what symptoms Melanie had and was she on t3 x
Well that didn't move the argument on did it! I wonder what the REAL statistics are for levo not working, I spent at least 3 years going downhill on levo before resorting to research on the web.
Good questioning I thought. Just sounds so ridiculous when you hear the whole saga like that. Medical profession are so blinkered. I wonder what they'd do if they were stuck with thyroid disease and getting no joy from Levo. Bet they'd turn to Google and self treating like we've had to do to keep our jobs and enable us to live our lives.
Yes agree when that gp was speaking I thought 'you have no idea re this illness unless u experience it'
The last doctor said only a small amount of people have low T3, but then how do they know if they don't test. Vanderpump says there is no research to show T4 and T3 combo works. There is loads of it. You only have to look at the list at the end of Janie Bowthorpe's blog (see Marz's post) to see that there is a huge amount of research. When doctors say there isn't any research, they mean there isn't any which supports their views. Not very scientific is it?This idea that because thyroid disease produces vague symptoms, seems to be a reason for not doing anything about it.
I thought Adrian Chiles's incredulity when he realized that it is very cheap to buy online from abroad compared to what the NHS charge was really funny. He couldn't get his head round it. Welcome to the world of Endo.
When someone uses the term "Vast numbers" I reach for my intellectual gun! What do they mean? 99.9%, 99%,95%, 90% or what? Do they have accurate estimates - if not, "vast" means nothing at all except a dismissive close-minded "get-out" to do nothing. Actually, we have a study submitted for publication which shows that even with suppressed TSH, athyreotic subjects (no thyroid) in 31% of cases have FT3 values in the lower part of the range. This is not below range, but is inadequate. Also there was a significant correlation of hypothyroid symptoms on presentation with lower FT3. This is a study conducted over a mean period of 5 and a half years. It's true that there is no WELLCONDUCTED research on T4/T3 combination - all the work so far is invalid because by looking at a random panel of subjects, the minor group who would benefit are swamped out statistically. But we've already had one refusal on what I would say hilariously silly dismissive grounds, rather than a serious examination. The failure of so called UK experts to either keep up with or even understand modern developments is very dispiriting. Too often it is other nations that initiate new treatment modalities and the dear old UK staggers on to the stage when the curtain's already lowered and the audience has gone home.
Diogenes,
I'm very grateful for all the work you are doing to change this dire situation! Kindest regards
Maybe we all need to write to Adrain Chiles... We need someone who will listen and take us seriously!
they can say anything with the little interest and records they keep regarding this - typical - like they say there is no evidence that NDT was any more beneficial than t4 - NO EVIDENCE as no testing! But sounds like what they want people to believe so that is good enough for them! And yep 0 only looks and listen and take note of anything that promotes their blinkered view - refuse to see/acknoweldge the evidence when we stand in front of their eyes!
Hi Londinium, we are singing from the same hymn sheet.
Thank you londinium
So very true what you have said. 30 years with Thyroid and I still feel not right. When you phone the Doctors for the blood test result, they always say blood test came back normal. I take 250mg a day. Feel at times I will not wake up, always so very tired.
Hemellite, have you thought of self-medicating?
Steffie-Hemellite Ask for a print out of your results, never take their word for it. Normal, fine and OK mean nothing other than they're in the range somewhere. Doctors don't care where in the range you are, because if you're in range then your symptoms can't be anything to do with hypothyroidism as far as they are concerned. You need where in the range, learn what that means then discuss your results and symptoms to get your meds changed if you don't feel well.
The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges if that is where you feel well.
Oh dear Hemelite. Life does not have to be like that! I know just how you feel, been there - 12 years trying to get a diagnosis despite seeing a specialist whenI was 19 - and there were intermittent signs -no treatment. 20 more years on t4, becoming increasingly unwell. had to give up teaching and could not function - NOT lazy - had worked most of my life and did a teaching degree in my 40's with young children - and a myriad of horrendous family stress - was not easy. Dragged myself through life. Someone once described it as like 'trudging through treacle'. How very true! Another analogy of having lead weights on every cell. Both sum up. I eventually booked to see Dr P. Told GP was doing so asked him to support me, after all after years of trying to get well had to try something - gp said he would. And give him his dues he did. Through Dr P ended up on t3 only. (I was on mix t3/4 as had been seeing endo for two years, until he started referring/treating to blood test only again) Told gp was taking t3 only and why. Told him understood side effects and what to watch out for....let me to continue and prescribed for me .
What a difference!! For the first time I'm my life I felt ALIVE!
If there is anyway you can get to see Dr P I would seriously recommend it.
Alternatively, the suggestions to self medicate are worth considering. There are a lot of people on here who are much better clued in than I regarding levels etc and what we should and shouldn't be taking for what. And I'm sure you will find lots of help.
It is worth reading around as much as you can too - look at TUK for books and information. I found Dr P's book to be invaluable, written so I can understand for a start!
I wish you well, and soon. It can be done!
Thank you lynmynott for taking part and helping to raise awareness. I'm sorry that you didn't get a chance to respond to comments made after your contribution and wish that you had been thanked at the end.
Yes, thank you Lynmynott!
Yes, I really wanted to respond and was shouting at the computer screen but unfortunately, they recorded my section so couldn't.
...which sounds really dodgy. They should have given you the chance to respond! THANK YOU anyway 
This is some of the evidence that T3 and T4 together gives better results (thanks to Janie Bowthorpe, STTM)
Here’s a study from 1996 which underscored that both T4 and T3 are needed to remove hypothyroidism: ncbi.nlm.nih.gov/pubmed/864... (And it followed research from the previous year showing that T4-only did NOT do the job–see ncbi.nlm.nih.gov/pmc/articl...
As far back as 1999, the New Journal of Medicine reported superior results of a synthetic T4 and T3 combination treatment, especially on the brain and other tissues. content.nejm.org/cgi/conten...
And another one titled Thyroid Insuffiency: Is Thyroxine the Only Valuable Drug, encognitive.com/ Journal of Nutritional & Environmental Medicine (2001), 11, 159–166
And here’s another one from 2009: eje-online.org/cgi/content/... (has a fee) but here’s where you can at least see the abstract: ncbi.nlm.nih.gov/pubmed/196... They evaluated depression and anxiety rating scales as well as patients own preference.
Also this one: endocrine-abstracts.org/ea/...
At first blush, this Amsterdam study appears to give the same propaganda of T4 only. But as you read on, it mentions this: Third, recent animal experiments indicate that only the combination of T4 and T3 replacement, and not T4 alone, ensures euthyroidism in all tissues of thyroidectomized rats. From 2001, Developmental Endocrinology to Clinical Research: content.karger.com/Produkte...
John C. Lowe’s Four 2003 Studies of Thyroid Hormone Replacement Therapies: Logical Analysis and Ethical Implications Excellent article (16 pages) about the efficacy of using T4 and T3 in treatment, and not using the TSH, and so much more.
I'm going to print this out and show it to the next doctor who tells me there's no research.
Did you look at drlowe.com? A woman wrote to him, having shown her endo the scientific studies linking firm and thyroid - pompous endo wouldn't even acknowledge it - she told her endo that she had higher expectations of her Dr's and sacked him. Brilliant! (He was not doing her any good anyway!) If they start losing money for patients maybe they will listen?
If you haven't already, you perhaps should contact Radio 5 with all this info? Who knows if enough of us respond they may keep the focus up there, instead of just letting the medics have all the airspace to air their views, like they seem to be doing. Using negative propaganda - talk about 'Fake news'. But it does seem to me that most of the time is them promoting their lies and trying to blind the public with medical explanations that they are not necessarily going o follow, like the t*** yesterday, or with false representations, accidental errors in media etc....all very sly and underhand. Dirty tricks to fool the public.
The stuck record of the British medical establishment, yawn. As for that GP, what a stupid stupid woman.
diogenesRemembering
Just one other comment re the quacks' estimate of those who need T3 as being 1-2% of the dysfunctional population. Where's their evidence and what studies is it based on? I don't know of any reliable studies that state such a thing. In Germany, 10% is quite readily accepted but of course we know better. Don't we?
I thought the same when they mentioned 1-2%. Where did they get that from? Also if it is indeed 'only' 1-2% then that's a significantly high number of people suffering and in need of T3 considering that Levothyroxine is the third most prescribed drug in the U.K. I wonder what that number is? I'm sure it's higher than a lot of other smaller groups of people with medical diagnosis that are prescribed expensive medications. By their own incorrect admission then of 1-2%, wouldn't this large group of patients benefit from T3 prescriptions and the NHS could benefit from the knock on effect of symptom resolution and less referrals and other wasted prescriptions for antidepressants etc etc. I hope they read this thread. The arrogance and stupidity. In some cases there's a need for T3. Clinical trials to provide this evidence are lacking due to simplicity of design as mentioned by Diogenes. Source T3 from elsewhere and not from monopoly supplier. Start measuring freeT3 and interpreting the results alongside symptoms and clinical examination with common sense. NHS please see sense and just get on with it. You are causing so much suffering.
Have you noticed they are always keen to bandy figures around but don't actually verify them with evidence ...and as I have mentioned earlier, any figures would not account for the invisible statistics who are self medicating because the 'Healthcare' did not care!
Infuriates me when they talk about little benefit, anybody out there ever asked how they found t4 or t3 - I certainly haven't on nearly 30 years? Given t4, the assumption is it will do fine. When it doesn't they blame your increasing symptoms on everything but your thyroid condition. If you ever get t3, they assume the benefits are a placebo effect so they don't have to acknowledge it and he presto - t3 has no proven benefit!
I keep coming back to there is something 'bigger' being hidden here. They must know something about the negative benefits of t4, or the positive benefits of t3 that they are desperate for us not to know... perhaps in fear of a real scandal.
Conspiracy theorist eat your heart out! But I cannot get my head around why they are, trying to hide t3 from us and why they are, and have always been, so negative about it and defensive about using it? Makes no sense.
This has been going on long before the price hike, the price increase has just given them the impetus to move things on, and quickly. Leaving me also thinking that the pice hike was too convenient.
It doesn't make any sense. I can't explain it to my best friend, who can't understand why doctors would refuse to prescribe something which might help and why such a cheap hormone costs so much on the NHS and can't be bought in the UK. It is corruption on a massive scale. A tyranny of vested interests:doctors and endos, who do not want to 'lose face' by admitting that they are wrong and the drug companies standing behind them.
In Germany if you have your thyroid removed, they automatically put you on T3 as well.
So much guff! I listened in the hope it would be journalistic enlightenment... sadly all I got was an eye twitch and confirmation that the NHS doesn't care for us !
I wrote to a Times journalist a few days ago - his response was that he doesn't write about this topic anymore, because he gets so much aggravation from 'both ends of the spectrum'. Great! (Coward!)
It's a three hour program.
Can anyone tell me at what point I should start listening?
• in reply tohumanbean
humanbean - just after the news and sport at the beginning. Perhaps 5 minutes or so in?
Think it came on after the 10.30 news.
The T3 segment started at 10.35 and went on for about 20 minutes.
I was sorry that Lynn didn't get the right of reply, and I bet that must have been infuriating for her.
• in reply tohumanbean
humanbean - apologies for getting the timings wrong, hangs (hypo) head in shame!
humanbean• in reply to
No worries! 
The talk before the T3 bit was interesting too.
• in reply tohumanbean
humanbean is it worth a listen?
humanbean• in reply to
It's about US justice (or lack of it) and a British man who has been in jail in Florida for 31 years for a crime that it is extremely unlikely he committed. He's still there...
I don't know if that kind of subject would interest you. I was only half listening.
• in reply tohumanbean
That's sad but unsurprising as they certainly do things differently there. There was a TV series with Trevor McDonald visiting a high security American prison where punishment didn't always fit the crime. No sense to it really.
Thanks for filling me in.
LouiseRoberts• in reply to
It was REALLY interesting! AWFUL, but interesting! xx
• in reply toLouiseRoberts
Thanks LouiseRoberts shall pluck up courage to listen!
Slightly! 
x
The GP never did explain why the cost was so high! I was disappointed that she wasn't pushed.
My mum listened to it with me and was shouting at my laptop in anger, which was quite funny to watch.
• in reply toBabette
Babette GP reminded me of a politician!
Unfortunately, Lyn's section was prerecorded so she had no opportunity for rebuttal.
• in reply toLouiseRoberts
LouiseRoberts I wonder if that was part of the deal for Vander wotsit taking part? Not that I'm cynical!
UrsaP• in reply to
My thoughts
LouiseRoberts• in reply to
LOL x
It is hard for mothers to watch their children going through this condition,(Or any illness) with the attitudes that the medics have to it. Their reluctance to want to understand. I'm fighting for my son now, as much as for myself! Do not want him to have the decreasing quality of life that I had to put up with. It has already impacted too much on his opportunities, at the age of 22! Same antiquated attitudes in an ever changing world?? Call themselves scientists... all thees Dr's are doing re showing they can read a book! (or a piece of paper with blood tests on....and most of them can't understand them = what chance do we have!)
helvellaAdministrator
I suggest that far more thyroid patients in the UK suffered from the inability of Teva levothyroxine to deliver its claimed dose back in 2013, than have ever suffered from poor quality levothyroxine or liothyronine from any of the major European or north American producers. (I exclude a couple of products that have been more visible on body building sites than than anywhere else.)
No evidence yet european journal of endoncriology did a small study that showed the benefits and pointed out flaws in previous studies. The lady doctors claims that the 10% to 15% was wrong and lot lower is also BS in my view unless she provides evidence.
There was also a study done in the US which showed combination thereapy was superior. The first lady was awful tbh and sounded like she didn't care and was bored.
verywell.com/t3-superior-t4...
eje-online.org/content/161/...
What would they say if the patients had other tests but still come up with nothing else? So for me for instance I've had full neuro work up and immunology work up. Nothing else atm has been found and neuro doc who done nerve test even said something else was causing it. Cos of that I saw immunologist cos they deal with immune system but like I said came up blank. What explanation do they have for that? Should clarify I'm not on t3 and never have been but have been figthing for it for last year. I've got a good doc at my surgery who is on CCG and is looking into my case.
Just sent this message.
Reply to Adrian Chile's talk on T3/liothyronine.
I just listened to your about thyroid disease and the drug T3. The lady GP and the endoncriologist claim of no or lack evidence is flat out false and just another reason why NHS is in the mess it's in (poor doctors) There has been many studies that show benefit to some people with the latest one being from the European Journal of Endocriology. The claim that only 1-2% don't do well is flat out false and would love to see their source on that. The studies that showed no benefit had lot of flaws which the European study points out.
For me personally I've been on T4 for hashimotos disease which is the autoimmune version of hypothyroidism. I started getting really sick 2 years ago which was the start of my hashimotos disease which forced me to give up work and college. In those two years instead of getting better like I should of I've been getting worse and worse and worse. Not only has it cost me my job and study it also has cost me relationships. For last year I've been researching like crazy due to not getting better and been pushing very hard to get trial of T3 but two so called "specalists" would not do it due to normal bloods and my third endo who does prescribe has been banned. He was banned due to "lack of evidence" even they he appealed multiple times with evidence and latest one from European Journal of Endocriology. I still suffer with being cold all the time, dry and pale skin, weak and sore muscles, memory loss and concentration problems, neurological symptoms and scariest of them all....heart attack like symptoms. I can go from feeling ok one minute to very ill the next. I've had a full neuro work up which found nothing wrong, saw immunologist which again found nothing else and bloods to check vitamin levels which again came back clear. What do those doctors on your show make of my case? Even the british thyroid association say (as corrupts as they are) say their is a clinical need for it in some patients.
The treatment of thyroid disease patients is shocking and my experience (and from reading many others) shows that doctors can't be trusted and you should research and question what they tell you. Too many doctors do not care, have huge ego/attitude and don't like to be questioned even when they are clearly wrong. Too many doctors just love to diagnose anxiety, depression and throw anti depressants at you. Anti depressants which funnily enough have no evidence whatsoever of their use/work and the "low serotonin" claim being a cause of depression. The "evidence" for that claim actually goes the opposite. Do anti depressants work for some people? Yes but no one knows why yet doctors give them out like candy. This is another reason the NHS is in crisis. I'm going to post links and if you want to contact me and talk I'm very happy too.
verywell.com/t3-superior-t4...
eje-online.org/content/161/...
eje-online.org/content/161/...
ncbi.nlm.nih.gov/pubmed/864...
nejm.org/doi/full/10.1056/N...
ncbi.nlm.nih.gov/pubmed/196...
peoplespharmacy.com/2015/01...
So as you can see some people really do benefit and need T3. It is not placebo. Why people need it? That is up for debate and needs figuring out but as I said previously some people really benefit from anti depressants but nobody really knows why cos the " low serotonin" claim is junk science.
I took my paperwork with me yesterday to see Dr about recent blackout she just said I seen this before Mrs Neill and didn't even acknowledge what I was trying to say,saw duty Dr about 10days ago about visual disturbances and got offered a coil !!!! I did think at the time you have got to be on a commission. I was then ushered out of the room.
???? I take it black outs occurring at certain time of month? I used to have same problem, as a teenager, until I went on pill...sorted me out for a while. Was struggling with thyroid symptoms at time, but couldn't get a diagnosis. Other times would be sitting on chair (at work) head on knees hands on floor, could not even sit up - people thought I'd blacked out but hadn't. Other times did black out. Was all so frustrating!
We have to be firm and go in tell them what we want. If they won't listen insist on a second opinion/referral. I'm not sure they can refuse...but that would be good to know?
(a friend of mine, years ago now, had an ongoing pain in leg - fobbed of for months, years maybe even, footie injury or such. Eventually asked for 2nd opinion. Secondary cancer. He was dead 18 month later at the age of 22.)
Do not take a Dr's word, if you think there is a problem, there probably is - fight for the right to be treated. Properly. And with respect.
From and strong (hard I know when you feel like c***)
Thanks that's interesting I will do a bit more reasurch on the pill not too keen on the coil,rt3 Deffo puts the breaks on during period times x
My point was not that the pill is necessarily the answer, but that it was caused by inadequate thyroid hormones and possibly others. If you are having thyroid issues they are probably causing your black outs? I also developed sever migraines as time went on with no or inadequate treatment, started with 'eye disturbances'. Cleared altogether within days of stopping t4 -would come back within days of taking it again, so don't take it.
I heard a part of the show and knew nothing about T3. Having taken levothyroxine for about 6 years with zero result, I quickly tried to understand what T3 was. Having recently changed to a new medical practice last year, I was put on the Thyroid Register. I had no idea this existed. Previous practice never mentioned it and was just handed the basic print off sheet for hypothyroidism. Having read all the posts and listened partially to radio broadcast - I am extremely concerned because none of my symptoms have been alleviated by the increasing amount of Levothyroxine. The cost of T3 in Europe -v- what we are told it costs here should demand a public enquiry, at least. i heard one caller say she could not bear to think of not being able to get T3 and would get it from Greece!! She sounded frantic.
We can provide needle exchanges, gastric band surgery, cosmetic surgery on the NHS, but not a basic drug that seems to be working for a lot of people.
And medication that is issued for a 'potentially fatal' condition. (Hence on the exemption list for prescription charges)
How would you know about t3 when your gp probably avoided telling you about it. My own gp, who did eventually support me in taking t3, and onto t3 only, did tell me originally that there was nothing other than t4...I had to tell him that I knew about t3, for him to refer me!
Thanks so much. This is a revelation and I am now finding out so much more on this thread.
Janetcat
It isn't just T3 that doctors avoid mentioning. Before levo and T3 were developed in the 1950s, 1960s, 1970s, the standard treatment for hypothyroidism was something that had various names, but is now known by many patients online as "Natural Dessicated Thyroid" i.e. NDT. It was first developed in the 1890s and was the first successful treatment for hypothyroidism. Before that sufferers died, probably in insane asylums, 10 - 15 years after they developed hypthyroidism.
For a history lesson on what untreated hypothyroidism was like, see this very old BMJ article on the subject of Myxoedematous Madness. (Myxoedema is an old name for hypothyroidism).
ncbi.nlm.nih.gov/pmc/articl...
The active ingredient in NDT is made from pig thyroid (or it could be cow or sheep, but pig is most common). The treatment is still available and many, many patients do better on it and prefer it to any wholly artificial drug developed by Big Pharma.
And many people in institutions, during Victorian period, for mental health, were there solely because they had HypoT. By time this was discovered they were too institutionalised.
Thank you for all the really useful info. Levo. seems to be dished out as a one size fits all. I am sure a synthetic drug will only be effective in some cases. Interesting to note, I have not ready any positive posts about the use of Levothyroxine.
T4 IS dished out as 'all you need'. GP's won't entertain that the problems that arise, when it doesn't work, can be attributed to ineffective t4 medication. They will blame it on everything but. Because they are discouraged from issuing t3 - If anyone knows why, would be great to hear -
I do know that some people do ok on t4 - they are probably not on here because they don't need to be - they are getting the treatment they need. We are all on here because we are unable to get a diagnosis , despite symptoms, or the treatment offered is ineffective or non-existent, and the GP's will not act. They want us to stay with t4, if we have been issued it, and accept that all these worsening symptoms are us just being hypochondriacs. ALL 50,000+ of us??? Really!!
Yet even being diagnosed with HypoT, after 12 years trying to get a diagnosis - a further 20 years on ineffective and damaging t4 - a gp told me that I had CF - would not acknowledge the connection with thyroid/adrenal. Started telling me how he had a theory that it was to do with part of the brain - obviously trying to 'blind me' with his superior knowledge - how can anyone have 'superior knowledge' to those actually experiencing the problems! I went onto proving that when I got t3, it cleared the cf...doubt he still would agree that it is connected!
Perhaps we all need to get onto R5 to say that if they really want to report/discuss the real situation they should listen to us!
Who was the gp - was trying to find the programme to listen to it but can't find it.
Try this, about 35 mins in bbc.co.uk/programmes/b08kvjvm
Thank you for the link, keep trying to listen, get to the article and it cuts out! Will keep trying.
It's probably overloaded with people from this forum tuning in Hopefully you've managed to listen to it now though!
Londinium, just seen this. What do you mean by my second link, please?
We should be reporting this back to the BBC.
Again, we need to feed this back to the BBC. If they get enough feedback they may listen?
Again, these thoughts should be referred back to the BBC.
Laughable...what drug on prescription is safe? And they are sending it underground leaving no option!!!
I'm finding a route to Adrain Childes, and whoever else I can...if it kills me!
This is the whole article by Janie Bowthorpe. The references are at the bottom. Marz put this on a couple of days ago.
I've just listened to it again and looked up Dr Amanda Doyle. She is on the committee looking into this list of medications to be pulled. She is on the governing body of Blackpool CCG where it says that Liothyronine is listed as a Black list drug which means it is not recommended for use in primary or secondary care as there is no evidence for its use and cheaper alternatives are available. She therefore lied on the programme when questioned by Adrian and said she was not saying that it couldn't be prescribed on a case by case basis. Backtracking. Dr Vanderwhatsit said there are 1 million being treated in U.K. for thyroid disease. Therefore on their 'pulled out of the air' 'estimate' of 1% who need T3 that's 10,000 people minimum going to be left suffering when their T3 is refused. A lot of people. And why can't they get another cheaper source of the drug? She never answered this question and side stepped it. Is there price fixing going in to pander to the T4 conspiracy of the NHS thyroid lot?? If they source for £1 a box from elsewhere then their £30 million bill for T3 is reduced to just 120k. What the T3 is going on? Is it to do with bigpharma Levothyroxine stranglehold of the market and not to mention all the other guff we're prescribed because of not being treated effectively?
Hi Hoxo, You should further respond to Radio 5, pointing out these facts. And the connections.
If you can find earlier post of mine, you will see that I too have been wondering about the possibility of price fixing. The lack of any commitment from the NHS to address the price hike, alongside their continually and increasingly negative attitude to t3, and the timing of the announcement, (hidden by invoking rule 50) plus the fact that t3 is being banded with over the counter and cheaper medicines for which there are cheaper alternative(s) (Plural??) for?? How would we conclude anything else?
My son also threw in today, 'Population control' Maybe they want to reduce the strain on the NHS by 100,000! Permanently?
Why would this drug be 'black listed'? Surely it was approved in the past and licensed?
And yep, if they added up the amount of medicines prescribed and wasted and they don't work and won't work as not the right medicine for the condition, who knows what the saving would be!
Drs are continually sidestepping these questions. Because they cannot answer them with any moral integrity!
Money makes the world go around...and everyone has a price! Or so they say...
Yes I've sent them an email already. It all seems very strange. Why wouldn't they answer the question?!
The black list is yet another piece of obfuscation.
They use the term "black list" and it is meant to advise doctors not to prescribe anything on a black list. We all know the colloquial meaning of a black list is a list of things that are forbidden. But when challenged, they say that things on the black list are not forbidden - which may techncially be true. The reality is that the message "DON'T PRESCRIBE" is written in letters a mile high and illuminated. The "but you can if ..." is in pale grey, on the inside back, in a font that is barely readable.
The effect is to stop prescriptions, but without them having to take any blame whatsoever for the consequences. The blame is deflected onto GPs who took it at face value, and at patients who are unreasonably demanding a medicine that cannot possibly make them well. (Always blame the flaming patients, why don't you?)
What is so different about the population of the UK to those who live in the many European countries which see continuing prescription (and manufacture) of liothyronine products?
Thought this might be the case. I wonder just how long t3 has been on this list, Seems to me dr have been 'discouraged' or 'frightened' to issue this drug for many many years! Has to be more to the reasoning, lets face it - according to the NHS only 1% on this drug, and it wasn't always £9+ for one tablet, yet they were just as negative before the price hike!
Somethings does not add up. Why are they so determined to keep us all/make us all ill?
Sorry, Hoxo , but 1% of 1 million is ten thousand not one hundred thousand.
I think all the numbers quoted by Vanderpump were plucked out of thin air. The number of people with hypothyroidism was an underestimate. They don't diagnose until TSH is 10, so lots of people are denied a diagnosis. And the 1% - 2% of people he claimed didn't do well on Levo was ridiculous. Doctors claim that there is no need to test Free T3 so how can they possibly know?
And, another point has just occurred to me. If the number is only 10,000 who struggle, why are there over 50,000 members on this forum? If they really all do wonderfully on Levo they would have no need to be here. I realise that some of the members are not from the UK, but the vast majority are.
Thanks for the correction! Lol Most of the people I know with thyroid disease struggle. Also I have to admit I actually have a degree in Maths! A long time ago and the hypo years badly affected those brain cells!
Sorry, Think that was me, not Hoxo, who added the extra 0 by mistake, but I'd bet, if all the people who are out there self medicating thorough lack of support and no other choice...it might be nearer 100,000!
Because, they have already driven the other 40,000 to self medicating. And although there are some from abroad, would be interesting to know the figures on here, as to who is doing what, with what, might give us a clearer picture of how big a group we are...and further ammunition to stand up and be counted. There must be a fair number of 'invisible statistics', people on here not on any register, though using t3 - and out there, who have not yet reached that point of despair, to think about ditching their Luddite of a dr and joining this or another forum to go the self medicating route, who are still going through the NHS 'motions' -I choose that word wisely! And yet even more are not even aware they have a real problem yet. They may only have starting symptoms and have got the whole rotten journey to go through yet! My son included! God help them!
Have done this, urging them to keep the discussion going...
Some journalist! Only does the easy stories then!
Someone out there will listen we just have to keep trying and if enough of us do they will have to listen eventually? I've just sent an essay to Radio 5, urging them to continue discussion on the subject.
Health care should not be a battle and it is not the patients who are causing this war!
The GP from NICE then goes on to say they don't intend to withdraw T3 for patients who really need it.
Why don't I believe her?! As you say, they'll just continue to refuse to test....
As with relative's B12 def. they dragged their heels, ignored latest research and were shockingly negligent - stopping her B12 injections, ignoring physical symptoms and prescribing antipsychotics, effectively categorising her under the more lucrative 'mental health', thereby supporting a corrupt big pharma.
If we could just get someone with dome clout to investigate this matte further for us? There must be a way - there are over 50,000 people on here....
That was the other maddening thing - the way they minimised the number of people affected by T3 ! My daughter is one of them. She was v. fortunate to be prescribed T3 only by the late Dr Skinner.
If GPs won't test T3, how can they know the number of people affected ? Funny how arrogant endo and GP also minimised the effects by quoting 1% and not actual numbers 😭
How can they know how many people they have driven away - by mistreating!
Vague/minimising/misleading/lying...etc...etc.
I hated the way the twit talked about how the thyroid works - they all feel impelled to do that to avoid answering teh real question - why it is mistreated when it is not working properly - think they know if they talk using a lot of medical words they drive the audience away before we can make out points!
Hi Londinium, thanks. I love the Malcolm Kendrick article. I love Malcolm Kendrick, full stop.
So have you all contacted the show and the BBC to air your views and give them this information?
Don't just tell us we know....we are living it!
Contact one person a day, one organisation a day, one doctors surgery a day and people with LEVERAGE to get the matter out there, discussed and addressed.
Has everyone printed off the new Thyroid Association guidelines re use of and contined use of T3 and insisted it is attached to your notes? and a copy for the doctors staff room?
There are less than 9000 GP practices. Have you done yours? ( before you ask, yes I have)
It is VERY GOOD that it is getting mainstream coverage. It's no wonder Adrian Childs sounded less than expert! It's a complicated subject....what did you expect!?
BUT I thought he did ask some B****y good questions and he did let the Doc explain, I thought quite well for a long while,
Perhaps if the patient had been a bit sharper and clued up she could have interjected with some more useful points. She seemed just focussed on her and not the bigger picture.
IT IS SUPREMELY GOOD THAT THE CCG DOCTOR RE-ITERATED THAT THEY ARE NOT STOPPING GP'S FROM PRESCRIBING T3. You don't need an Endo you need to go work on a decent GP.
I wouldn't have known about this Radio interview unless my boss told me he listened to it in the car and he wouldn't have cactively listened to it if I hadn't already bored him with the story.
juliat
I've contacted them too. I have no respect for people who don't answer straight questions i.e. Why they won't source the T3 from a cheaper source.
I'm one of the people they claim have done perfectly well on levothyroxine alone. I've been taking it for 22 years and never felt well so kept going back and asking them to look into it. They've never tested my T3. I recently got a copy of all my medical records and there are comments right from the beginning saying" can't understand why she's still gaining weight - blood tests show no problem now". I still have every one of the list of hypo symptoms but two different endos in the last 6 months have recommended a reduction in my levothyroxine even though my tsh is within the reference range and I have no symptoms of over medication. Have seen many endocrinologists and the only help I was ever offered was a referral to psychiatric services. But technically I'm in the majority supposedly doing ok on Levothyroxine only.
They've tested everything else that they say could cause my symptoms and according to them I'm fine.
When I recently paid for private tests they showed I definitely have a T4/T3 conversion problem. I'm now waiting for GP to get a decision from the higher powers as to whether I can have the DIO2 test on the NHS. Still no alternative medication though.
I'd love to know what the others who actually got prescribed T3 did differently to me to get it and how so many actually managed to get it prescribed, looking at the amount the NHS claim they're spending on it!!
It's ridiculous that so many people can be deliberately kept unwell!
Did you notice also, that they recorded Lynn's participation - was that her choice or theirs? And then this Vanderpump or whoever, did their usual ploy of discussing how the thyroid works - avoiding the issues in hand - who is disputing how it works, we are disputing the treatment when it doesn't! But what he succeeded in doing was, probably, switching half the audience off, as it will have meant nothing to them, other than a lot of medical jargon. The only people still listening when his had finished are likely to be those invested in the issue, us and the Dr's.
Also I was glad to hear Adrian acknowledge and highlight to the unseeing audience (Those still listening!) that Melanie was fit and well, now she was on the right medication - I didn't notice either Dr speak with Melanie? I'm sure she would be used to Dr's ignoring her! Was she in the studio - I got the impression she was. It did feel a tad biased towards the Dr, or part of their ploy to commandeer the time, so the other side do not get time to respond! Who knows. But
I had seen the posts about Stephen Nolan. Makes a mockery of 'free speech'...like that was ever 'free'. Makes me wonder if programmes like the other morning actually help or hinder this cause...after all, who is left listening. It is almost like they want to ridicule us further.
Switched J Vine off the other day - a radio discussion about banning men from driving....????? Really - is this the best they can do...how can anyone take him seriously when it is issues like this being raised rather than ones that are a) more important and b) likely!
And at the minute, who can we trust? Are there any journalists out there who have some sense of morale and balls to go with it?
How very true - not much use to us then, maybe we should be asking to be heard elsewhere?
Did he say why they don't treat it? Is that going to be the stock answer then - Your Hypothyroidism will not be treated, even though it has the potential to be fatal? Are they going to do the same with other potentially fatal conditions? One by one...maybe it is population control after all!
Maybe you should be reporting this? Cinnamongirl has just directed me to CQC - a site that supposedly monitors care and I have sent a message to ask for their help regarding the t3 situation. I don't know if they will be able to help or direct us to someone who can support us, but they do seem to have an option to send concerns about GP's. Wish I'd known, I'd have been referring a few visits to them. We need to show this neglect of care.
Yep but if we all did it the message may well get across?
I'll be going back to them if GP try to stop my t3!
I'm hopeful with BMA guidelines they won't but think they will try - review due before next issue of meds, due in a month....
Can you imagine if they had complaints from everyone of 53,000+ people on here, for every bad experience had!! Probably blow the internet!
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