radio 5 live now

feature about T3 now

144 Replies

oldestnewest
  • Thank you I missed the start can you tell me what symptoms Melanie had and was she on t3 x

  • Listen to the full interview when BBC posts the show online shortly after the show ends.

  • Thank you londinium

  • 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'

  • Neither Vanderpump nor the GP were accurate in what they said. They said that the "vast majority" did well on T4. But how are people even diagnosed accurately when their FT3 isn't tested? So they're talking guff. I had symptoms for 25 yrs, probably even longer since childhood. But not one GP or medic diagnosed me with endocrine symptoms. Instead, I was diagnosed with Tired All The Time/TATT and then Chronic Fatigue Syndrome/CFS.

    These medics can, in my opinion, take a long walk off a short pier - they've been bloody useless to me and even now they continue to misinform the public by talking about the "vast majority", as if they've got a bloody clue what they're talking about, when the truth is that they can refuse to test our FT3 for years on end.

    When I showed my GP my LOW FT3, my BELOW THE RANGE FT3, which I did elsewhere without his bloody useless involvement, he said the FT3 was perfect. I then challenged him, and he then admitted that he knew it isn't good, but "we don't treat this", he said.

    So, in the first instance, they don't test my FT3. In the second instance, when I show that my FT3 is below range, I'm lied to and told it's perfect. In the third instance, I'm told "we don't treat this".

    None of these so-called bloody 'doctors' can be trusted or respected.

  • Hi Londinium, we are singing from the same hymn sheet.

  • 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?

  • 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​.

  • Hi SeasideSusie you understated it - This cynic says Normal means - ranges , what are those, and who cares.

    Normal means – OK, below range but I know better than the NHS guidelines.

    Normal means – I don’t understand what the lab has said – but I’m not going to do anything about it, or I do know but I’m not going to do anything about it.

    Normal means – have a stick (thinks ‘it’s cheaper than treatment’)

    Get those print outs. All this has happened to me. (Rant over for now)

  • 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!

  • 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.

  • I've posted the link to the show on this very post. Just scroll through...

  • 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 :D Hopefully you've managed to listen to it now though!

  • Yep, thanks and spent all afternoon responding to it! Forgot to mention thought the 'vague statistics' these Dr's use to supposedly support and justify their bias. Treating statistics, and don't we know how they like to treat numbers! rather than people!

  • 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.

  • These so-called doctors don't give a damn for patients. As for the stupid female GP in the show saying that patients present themselves with a range of symptoms so it's difficult to attribute it to a thyroid issue. Duh?!

    Is she f-ing clueless that thyroid and endocrine issues cause a variety of ailments?! And every time Adrian Chiles asked her why the T3 is hundreds of pounds on the NHS but cheap as chips in Greece, etc, she ignored his question and repeatedly cautioned that patients shouldn't buy it online or in Europe cos we simpleton patients need the expert supervision of her and other doctors! They are so up they own backsides it's unbelievable.

  • 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.)

  • 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.

  • Wish you'd been taking part in the interview Diogenes.

  • Diogenes,

    I'm very grateful for all the work you are doing to change this dire situation! Kindest regards

  • Yes, that's my point Scazzoh, i.e. how can they claim to know that the vast majority of us have no FT3 issues? They know that it's a dishonest and disingenuous claim because they know that they constantly refuse to test the FT3 of thousands of patients/people. So they know sod all about our FT3. And when I shove my LOW FT3 under their nose, they still pretend that it's normal and perfect. They are medically negligent and causing us harm.

  • 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.

  • Nothing will change... unless we state the facts about the medical negligence, ignorance and incompetence ON OUR TOMBSTONES, SO THAT EVERYONE IN THE CEMETERY READS THOUSANDS OF TOMBSTONES THAT STATE THE SAME THING ABOUT DOCTORS AND THE MEDICAL INDUSTRY.

  • 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 😭

  • Polaris,

    That's my point exactly. IF THEY DONT TEST FT3, HOW CAN THEY KNOW THE NUMBER OF PEOPLE AFFECTED?

    Even when they did test my FT3, a few wks ago, and my FT3 was BELOW THE MINIMUM REF RANGE, the idiot GP said it was good and fine and normal. When I challenged him, he then admitted that it wasn't good. (So he had lied). And then he said, "but we don't treat this".

  • 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!

  • UPower,

    I was so shocked by his admission that he knew that my Low FT3 result was not a good result (after having said a moment earlier that it was fine and dandy), that I didn't ask him why he/they don't treat it?

    I was incredulous at him literally lying and fobbing me off just a moment earlier when saying and pretending that it was a good result, and him hoping that I'd leave the appt none the wiser about his dishonesty and lack of integrity to the patient.

    I had also wondered what he meant by "we don't treat this". Who was "we"? Are they all the doctors at that GP practice? Are they all the GPs in the UK? Have they all been secretly instructed, in writing, by some medical council or authority not to treat our Low FT3? That is deliberate medical negligence and medical harm of the highest order. I wish I'd recorded the damn appt. Maybe we all ought to consider recording appts.

  • 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.

  • I'd have to raise a complaint about almost every GP I've ever seen. 🤕

  • 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!

  • 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!

  • 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!

  • 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 ;)

  • It seems all these 'conversations', however they are reported are choreographed to allow a small part of 'our' contributions to be made and for it to be overwhelmed by others...you should have been allowed to respond.

    Keep up the good work. With thanks.

  • 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.

  • Thanks for that, Scazzoh.

    Do you have a link for the full 16 pages of Dr John Lowe's article? I feel like printing all of the material and carrying it to every appt that I have, just in case the doctor talks shite - which, I find, is a common occurrence.

  • Link to the article by Dr John Lowe

    thyroidscience.com/Criticis...

  • 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.

  • Scazzoh,

    Your 2nd link didn't work. 🤔

  • Londinium, just seen this. What do you mean by my second link, please?

  • Scazzoh,

    The 2nd link in the scroll of links that you provided above.

  • This is the whole article by Janie Bowthorpe. The references are at the bottom. Marz put this on a couple of days ago.

    healthunlocked.com/api/redi...

  • 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.

  • Yes, CG,

    Stupid and ignorant beyond belief. And then she speaks with certainty - when she has no bloody certainty and no evidence is they don't test FT3. And when they do, or we do, they look at the LOW OR BOTTOM OF THE RANGE RESULT and glibly state that it's normal and perfect. They are ARROGANT FOOLS.

  • We should be reporting this back to the BBC.

  • 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.

  • Scazzoh, 'corruption on a massive scale' Wholeheartedly agree. A huge scandal awaiting to be uncovered - just need a journalist with balls to take it on...any ideas anyone?

  • UPower,

    It makes perfect sense where money's involved. Money is changing hands. And Big Pharma and their cronies and colluders become richer by keeping us all ill.

  • Diogenes,

    How can they know who needs T3 when they won't/don't even test our T3? It was implausible and disingenuous, and they knew it.

  • Again, we need to feed this back to the BBC. If they get enough feedback they may listen?

  • In Germany if you have your thyroid removed, they automatically put you on T3 as well.

  • A good idea to all write to Adrian Chiles to say that Vanderpump and the GP on his show, both made disingenuous, dishonest and baseless statements cos they actually know that the vast majority of us never have our FT3 tested - so how can they possibly know that the vast majority of us don't have any issues with our FT3?!

    And even when my FT3 was tested, and found to be LOW OR AT THE BOTTOM OF THE RANGE, the Endo's and GP said it was NORMAL! So whether you're in the friggin' range or out of the friggin' range, they still say it's normal and perfect - and they do NOTHING!

  • Have done this, urging them to keep the discussion going...

  • 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

  • UPower,

    According to my observation and experience, the BBC always assume, infer and say that the doctors and Big Pharma always know best and always have the patient's best interests at heart.

    On the BBC, in the last 24 hrs, was a caller who rang in about the charities that have been fined for misusing, selling and sharing the data of their donors, and even investigating their donors to find out how wealthy they are and who their circle of friends are. The BBC presenter ungraciously cut off the caller after the caller had said that three of the fined charities were cancer charities, and that she would never donate to such a cancer charity because they do not support or promote natural/alternative cancer options. The BBC presenter cut the caller off and said that she can't allow such an inaccurate statement to be made and that cancer charities would, of course, be interested in even "toothpaste" if toothpaste were shown to have cancer fighting properties.

    The BBC presenters cut you off, and then they make false and inaccurate statements whilst knowing that you cannot respond because they've deliberately cut you off to silence and censor you. They also know that their statements will carry weight and be presumed to be true and accurate because, after all, they are the BBC and are expected to be UNBIASED at all times.

    But the BBC is NOT unbiased when it comes to the above. And I have heard them behave in like manner on other occasions. If you look up the post about Stephen Nolan cutting off a female caller, dismissing her remarks and not letting her reply to his dismissive and inaccurate remarks about thyroid treatment in the U.K.

    The BBC always behave like this - as do many other radio stations. So they are very much an enabler of Big Pharma's Emperor Clothes.

  • 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?

  • UPower,

    According to Ken Loach, the film director of 'I, Daniel Blake' and many other films, the BBC was and still is an extension of the gov.

  • How very true - not much use to us then, maybe we should be asking to be heard elsewhere?

  • 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!)

  • Hi UPower - I too wrote to a Times journalist some time back about B12 Deficiency and got exactly the same response.

  • 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!

  • We have to keep fighting though.

  • It's a three hour program.

    Can anyone tell me at what point I should start listening?

  • humanbean - just after the news and sport at the beginning. Perhaps 5 minutes or so in?

  • So does it go on for the whole three hours? Aaaagh!

  • humanbean No!! Make a brew and put your feet up for 10 minutes. Windows closed obviously, you'll want to scream.

  • Thank goodness for that! Thanks for the info. :D

  • HumanBean, if you hear the first interview with the fantastic Chris Stafford-Smith, everything he says about the judicial system and their lack of integrity also applies to the medical system and their lack of integrity. The thyroid discussion follows on from that.

  • Think it came on after the 10.30 news.

  • Hi humanbean - listen just after its end or your blood pressure will go up.

  • Much of what Clive Stafford-Smith stated in Adrian Chiles' show about the corrupt or disingenuous judicial system (wearing the Emperor's Clothes), applies to the medical industry - Vanderpump, the GP and all the other cronies in the medical system are wearing the Emporer's Clothes and keeping up the pretence.

  • Again, these thoughts should be referred back to the BBC.

  • 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.

  • humanbean - apologies for getting the timings wrong, hangs (hypo) head in shame!

  • No worries! :D The talk before the T3 bit was interesting too. :D

  • humanbean is it worth a listen?

  • 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.

  • 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.

  • It was REALLY interesting! :D AWFUL, but interesting! xx

  • 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.

  • Babette GP reminded me of a politician!

  • CG,

    The GP knew that she was being disinegeuous and had no true answers. You could hear it in her feeble answers. And ditto for Mr Feeble Vanderpump.

  • Yes Babette, she couldn't/wouldn't give a straight answer and instead kept diverting to silly remarks abour it bring unsafe for us to buy &/or treat ourselves without the prescription and supervision of a GP or hospital consultant.

    Prescription and supervision of an NHS medic?! Chance would be a fine thing.

    They're not interested in treating our thyroid hormone deficiency. Instead, they like to treat us with statins, stents, bisphosphonates, etc - as if I was born with a deficiency of all those.

  • 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!

  • You can email the programme on the radio five live website. I've sent them an email today.

  • Thanks - Done so too - more of us that do - better chance of being heard...

  • Unfortunately, Lyn's section was prerecorded so she had no opportunity for rebuttal. :(

  • LouiseRoberts I wonder if that was part of the deal for Vander wotsit taking part? Not that I'm cynical!

  • My thoughts

  • 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!)

  • Why don't the NHS just buy each packet of T3 for a couple of euros from the countries that we all know about - instead of paying £250 for each packet? Corruption of some kind, to some extent, at some level, has got to be behind it. So who gets to decide that'll they'll get T3 for £250 instead of buying the T3 from Greece, Cyprus, Iran, etc? What idiot made that decision, costing the NHS so much more and preventing many patients from having this option available to them?

  • 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.

  • How did you send your reply?

  • Just replied also. Urged to keep discussing topic.

  • Hi Londinium, thanks. I love the Malcolm Kendrick article. I love Malcolm Kendrick, full stop.

  • 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.

  • Me too! And I have been reading around this for 30+ years and still I'm still learning more and more on here! Realising just how much I still don't know and understand! Great forum. Fantastic support. (Think I'm now addicted to it!)

    Good luck.

  • 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!!

  • 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?!

  • Because they don't want to be caught telling lies on public radio - to many witnesses!

    Think you are right, we should be questioning why they are keen to avoid these questions. Has to be a reason. Won't be a reasonable one, or they would be keen to highlight it!

  • 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!

  • Don't they just!

  • 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!

  • Hoxo,

    It was obvious from her voice that she knew she was lying; she sounded awkward and unconvincing. It was also obvious that she wouldn't/couldn't explain why the bloody hell they can't/won't buy the T3 from Greece, Cyprus, etc. So there's definitely some shenanigans going on - and my hunch is that she knows it.

    I also doubt the sincerity of Vanderpump.

    The thing to do, if anyone knows how, is to check the financial ties between her and her colleagues on the board... and Big Pharma. I previously posted something about the proven financial ties, which was published in a newspaper artivle, about those who decide upon us being increasingly prescribed and recommended statins in the U.K.... and Big Pharma. If we remain undiagnosed and untreated for Hypothyroidism, we then have long term very elevated cholesterol and inflammation and narrowing of the arteries, so they put us on statins and give us a bunch of stents - and it all continues to keeps Big Pharma and their cronies, and colluders, massively wealthy.

    The whole thing stinks.

  • 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!

You may also like...