Thanks to Lorraine for posting the link. Much ado about nothing but so illuminating. PR
Colin Dayan & Tony Weetman - Debate: This house... - Thyroid UK
Colin Dayan & Tony Weetman - Debate: This house believes that patients with hypothyroidism...
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PR4NOW
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shawsAdministrator
Thank you very much for posting and Lorraine for bringing it to our notice.
They mention the internet and it seems to me that they think it is just a phase that patients are requesting T3 - sort of fashionable.
Dr Dayan, to me seemed the more sensible but some still stick to the fact that T4 is the 'one and only' and just adjust the dose or they tell the patient that their bloods are perfect, so why are you still complaining, have an anti-d.
Dr W's T3 addition is so very, very small, I doubt the patient would have much of an improvement.
So the discussion will continue.
Thanks once again.
Ok, got it.... They cannot prescribe t3 because in countries like holland where it has been more widely prescribed, lots of patients are on it and the uk health system wouldnT be able to cope. Lol.
Apparatly the underlying autoimmunity is what causes the problems, not the lack of t3. Oh. Well i did really well on t4 only for many years, even though i had auto immune thyroid disease. ( hashimotos) It was only when i stopped doing the conversion thing that i felt terrible and found i needed t3 as well as the t4, So the auto immunity didnT affect me for over 10 years, and then it suddenly did?
i did read a piece recently, which also said that the auto immunity in hashimotos was what caused a lot of problems, and it said that a realistic way to deal with it would be to maybe remove the thyroid early on... Here it is....medpagetoday.com/MeetingCov...
It seems that we hypothyroids have many more physocological issues that the general populace..... Well yeah, after hearing the pathetic bull s*** debate, I am now mad. Actually I am bloody mad, and if i see that idiotic smarmy git weetman , i will have to wha ck him round the head with my tub of ndt.
i take ndt, because, as Weetman says, the synthetic stuff involves multi dosing and you still get a roller coaster ride. The hormones in the ndt are said to be bound, so you can dose in one go and stay on a nice even keel all day.
Grrrrrrrrr.... Let me at him...
G X
The idea that antibodies are the only major cause of dissatisfaction with T4 treatment is a bit of a non-starter from my personal point of view. I've never had a positive antibodies test, and I've had a few done. Despite this the only thyroid med I've been able to live with over the last year is T3.
I suspect the people taking part in the debate don't believe in thyroid hormone resistance which is what I think I've got. It certainly didn't get a mention that I recall.
humanbean, allopathic docs think 'thyroid hormone resistance' is rarer than hen's teeth so it can never be that. PR
Is there any way of diagnosing it? Measuring it? My mind has gone completely blank on the subject. 
isnt it the conversion test?
I don't know what you mean by the conversion test. Do you mean the ability of the body to convert T4 into T3?
My understanding of thyroid hormone resistance is that the patient may have normal or near normal thyroid function test results but may have loads of hypothyroid symptoms because the cells of the body don't react to thyroid hormone. But I may very easily have got the wrong end of the stick.
That is a disturbing article galathea.
"The results stimulate the hypothesis that Hashimoto is a surgical condition,".
What a fine display of the fact that doctors practice 15-20 years behind the science and have no knowledge of nutrition, let alone any understanding of autoimmune conditions. PR
The article would scare the life out of most people. It just shows the complete and utter ignorance that you just 'whip out the thyroid gland' to resolve what! The thing is we believe(d) that a doctor who specialised would know the ins/outs of the patients condition.
They forget we are human beings not robots.
They've been whipping out wombs for well over a century, so whipping out thyroid glands from a group of people who are mostly female wouldn't be a problem for many doctors.
In both cases, of course, the underlying reason would be because women are believed to be prone to hysteria and neurosis. The only thing that has changed in the last century is the terminology, and now they call it "somatic symptom disorder" or some rubbish like that.
What on earth does that mean, "a surgical condition? Is it something you get after surgery? Or something you need surgery to treat??
I liked the comments on that article. And I agree with PR4NOW. It is a very strange article, in a kind of "cold fish", "pinning a butterfly" to a board kind of way. There seems to be no insight on the part of the authors that they are suggesting a course of action which is really quite extraordinary under the circumstances they describe.
Galathea for the 10 years you were well on levo was it Eltroxin? Because when my chemist had some Eltroxin 'left over' i.e. 25mcg and gave me some so I could take 50mcg with T3, what a difference that made. As you it was withdrawn - probably the generic makes MP more profitable - it certainly makes T3 much, much more profitable at £129 per pack.
Off tract - Dr W is angry with the internet - that patients get info from it. He cannot understand whatsoever how very unwell some can be on levo - not even including all the new symptoms which arrive making it impossible to walk or worse with stiffness too (which I would assume they would diagnose as fibro). Closed eyes as well as ears.
Who knows best - a patient who is taking a medication and is worse but according to the thryoid tests they are perfect so as Dr W has already said previously we have a mental illness then i.e. dissatisfied with levo but TSH in range.
We are very unwell, a nuisance now because the doctor is fed up with us appearing in the surgery every week or two. So the prescription pad comes out for 'other'. and other and other.
Isn't it strange you are now well - I am now well only due to a changeover from levo. Besides the ratio of T4 to T3 that he mentioned was 14 to 1 (miniscule amount of T3) when new research has shown that a 3 to 1 ratio has proven best. Also I quoted yesterday that rats which had their thyroid gland removed didn't get better on T4 but did when T3 was added. Yes the Authorities allow us to suffer (majority women of course).
Any doctor who has hypothyroidism - on levo and unable to work would they not switch over at least on a trial basis. Dr Dayan made sense to us if not to the others doctors and he did mention T3 for the brain.
Dr W should have been at the Thyroid Conference when Dr Chris asked the audience to raise hands if they were dissatisfied with levo.
Everyone appeared to do so.
If levo was the 'perfect' choice for all patients there would be no forum like this one, no ThyroidUK, No STTM, Hypothyroidmum etc etc. You and I would be out in the lovely sun getting on with life
We are not all mentally ill but would be most probably if we had continued on the 'path' demanded.
When i was well on t4, ( i did a degree, held down a proper job and lost weight). I never took any notice of the medication brand. I never queried any of it, because i felt fine. I stopped feeling fine in about 2001. Does this date coincide with any thing?
G x
I cannot say for sure but I do know that quite a few who were on Eltroxin for 25 or 30years or more saying that they had become ill when Eltroxin was removed. MP of course promised it would be coming back! That was more than 2 years ago. Eltroxin was the Brand levo generic as you know.
• in reply toshaws
Hi shaws, I just wanted to say thank you for the articles you sent me the links to. They are very good. x
Thanks very much for posting this. I've "liked" your post, but the video itself horrifies me. The major things that scared me :
1) The absolute obsession with TSH. Nothing else matters.
2) I got the feeling that all the people speaking thought that T3 didn't actually have much of a role in the body and that T4 was the important thing. Madness!
3) There was shocked talk of people buying T3 on the internet, and I thought I detected a threat to that.
4) There seemed to be no recognition that people feeling awful on T4 only was a real thing. The implication was that anyone complaining had serious mental problems.
5) Nobody cared how the patients felt, and the idea that someone might choose to be thyrotoxic (by their standards) without worrying about the consequences obviously hadn't crossed their minds. I'm very sure my TSH is suppressed on T3 only. If it shortens my life I would carry on anyway. My life wasn't worth living without T3.
6) Dr W had ludicrous ideas about what constituted a reasonable dose of T3. He was talking about there being a 14:1 ratio of T4:T3, and someone on 100mcg T4 only needed 6mcg T3. He referred to "ludicrous amounts of T3". The examples he gave of ludicrous doses was 10mcg or 20mcg per day. Can he not tell the difference between someone who is healthy and someone who is sick? How does he know that a sick person will convert reliably, and can absorb the medication as well as a healthy person? Obviously he doesn't, but he takes it for granted that we can.
7) Symptoms were really not mentioned. I get the impression they don't even know what they are, even though they are allegedly leaders in their field.
There were other things I wanted to say, but I'll have to watch the video again.
Summary : Terrifying and threatening for anyone who needs T3, particularly if they buy it themselves.
I donT think i can watch it again..... It makes me want to form a posse and go hunting.....
I thought there was a threat in there too.....
Thyrotoxic was bandied about, with no explanation of what was supposed to happen if you are thyrotoxic.... And the endos were shocked that given a free reign, most patients took meds until they were thyrotoxic, and preferred it that way. I think the definition and measurement of thyrotoxic need looking at.....
G x
Yes, they will probably try to get the regulations changed that we cannot source our own medication. We will then be arrested for buying hormones for goodness sake only because the NHS wont prescribe.
I do agree with you. If taking T3 is risky it should be a decision patient makes whether to take it or not! I find it ridiculous them saying one should suffer but live long. Oh well with low T3 you will probably die early anyways.
Not saying taking T3 is dangerous, but that's what we are told.
Over here in Finland patient has rights to plan their medication, approve or disapprove it and request something different.
Sounds nice on the paper! But in reality the only right is to take whatever they prescribed. If you disagree next one is ad's as you are being difficult.
And I agree about the symptoms too. Why it does not matter? From where they get the idea what the symptoms are supposed to be? If only people responding to t4 are taken seriously that is inhumane, unethical, and against everything doctors are supposed to believe in.
It is nothing but wrong to ignore everyone else and say it just does not exist. It is bullying. Simply, purely bullying.
If they argue about side effects , how about other drugs? Take simple antibiotics that can ruin your life as doctors don't have a clue about after care. Take pain killers that can cause you ulcers and so on. A risk doctor is willing to take. Sigh. And one more sigh.
Quality of life should matter. Now it is blood value that determines how you should feel. When it is optimal then patient must lie.
"...... 7) Symptoms were really not mentioned. I get the impression they don't even know what they are, even though they are allegedly leaders in their field......"
Lol... I think you may have hit the nail on the head there humanbean.... Did you notice that after each side of the the errrrmmm argument... Was presented, no one had any questions... I suspect thats because none of them really knew enough to ask anything.....
Would love to see the same argument presented in front of us.... Say at the next thyroid uk conference? 
Xx g
They wouldn't survive because they'd have absolutely no answers. We know the answers which differs completely to their assumptions.
I was amazed at their seeming lack of knowledge about physiology. How could they possibly think that T3 has no purpose? They sounded so amazed every time they said 'so, it possibly does have some use, after all...' Of course it bloody does! Name me one substance that serves no useful purpose that the body makes. Even if, in excess, it's harmful, the body does not go to all the effort of making a hormone it does not need. There's no logic in that.
Who foots the bills for the 'Conferences'. Don't think it's the manufacturers of liothryonine?
It's like the story of the Emperors Clothes!
They had a conference in Orlando .There were many disney characters there who paid for them.What is there medical knowledge , read ONLINE that trainee endo get help (MONEY) to attend these conferences ,also a nice grant to train as a endo.Maybe that cash could be used for reseach into better meds for thyroid patients.
Dr Lowe always said that it was monetary incentives by Big Pharma that persuaded all of them to begin to prescribe levo with untrue statements. That still seems to fit in today.
Big pharma makes $millions with levo so they will not change their methods. They are only interested in levo plus the extra medications needed by patients when developing other problems which they are told isn't due to the thyroid hormones. It might be if we're kept on a dose due to the TSH only and always unwell.
I agree entirely, if I hadn't self medicated (with NDT) I would be dead, so it was a risk I was prepared to take. I had no life
Totally agree, HB. They didn't even mention conversion! It was all theory, like playing medical chess. The 'patients' they were talking about weren't real people, but pawns, in a game. And that goes for both sides of the debate! It was all so cold, and dispassionate and clinical. They Don't seem to know that real people aren't like that.
But people are obviously nothing to them, we just Don't count. We're just a bloody nuisance, always complaining that their precious theories Don't work. But, the theories are far more precious than the people complaining, so... tough luck! We just have to learn to fit into the theories, rather than the theories being designed to fit us. The whole thing was disgusting!!!
Humanbean - you summed up my reaction in your post. So frustrating to hear this nonsense. How arrogant is Tony Weetman? How dare he claim this is all in our heads! How narrow-minded. If this is what we are up against, what hope is there? 
I've just remembered that there was something else I wanted to comment on. One of the endos - Dr W I think - showed a slide which claimed that BMI was higher for people on T3, and lower for people on T4.
Have you ever heard such total and utter hogwash? A common incentive for many people coming to this forum is to lose weight. They've been taking T4 for years and they are carrying around lots of extra weight which piles on at a terrifying rate. Give them some T3 and they start to lose weight. I realise there are always exceptions to everything, but for many introducing T3 is a huge boost to losing weight. So how can Dr W claim that T4 helps people to lose weight, and T3 makes people put it on? I am just completely perplexed by this. What is his motivation?
I saw one of his earlier talks (to the American Thyroid Association I think) on video in which he claimed that some very old photographs were evidence that levothyroxine worked. But the pictures were from the BMJ published in August 1892, introducing the idea of using sheep thyroid as a treatment for hypothyroidism - long before levothyroxine had been developed.
Makes me wonder if Dr W likes introducing a bare-faced lie into all his talks.
It was at the American Thyroid Association's Conference he made the comment.
Having read the replies, I'm not going to watch the video. I'm already furious with the doctors who have made me ill by under-medicating me.
I'm now better than I've been for about 20 years (since having a total thyroidectomy), and this is because I'm now self-medicating with T3 (added to nearly as much T4 as before - only 12.5mcg reduction in T4, plus 25mcg T3).
Can't wait to see my endo next week!!! But don't need more to be angry about!!!
Yesterday I read and posted part of a link which stated that rats who had had a thyroidectomy only got better when T3 was added. Says it all. The unnecessary suffering.
At least Professor Dayan was very sensible about the use of T3 and said some of us do need it.
Yes, I've read that rat study. There are plenty of studies now showing that some of us need T3. When I see my endo next week, I'm taking a handful of recent research papers for him to read.
Previously I've offered him the choice to read what I've brought. This time I'm not going to offer the choice. I'm going to just tell hime he needs to read them.
Fortunately, he's open to learning. I'm hoping he'll learn from my success with T3, and that he won't dismiss my new state as irrelevant or psychological.
By monday evening, I'll know which way it goes!!! Trying not to hold my breath!!!
Maybe he was at the Conference so I hope he wasn't one of the 80%.
I don't see the reason for keeping patients unwell due to guidelines. After all we are only asking for hormones not some other 'maybe soon to be legalised form of 'high' product'.
We just want a level of good health in which we are happy and functional, not knowing which way to turn for help/advice.
I think we should write to Prof Dyan saying he's correct taking the patients views into account and the others are not so right. Was it 80% agreed with Dr W. and 20% with Professor.
You are right dolphine5, It is anger that drives us when we find out that we've been so unwell because we've either been undiagnosed or unmedicated, then like you to have a thyroidectomy but not have a choice of thyroid hormones, or a trial, due to the guidelines Particularly when we begin to recover when we add/change some thyroid hormones
Hi Doolphin 5, out of interest, how much T4 were/are you on with the additional T3?
I was on 125mcg T4. My endo asked me to drop to 75mcg T4 in order to take 20mcg T3. In fact, he wasn't allowed to prescribe the T3, so I got my own and it was 25mcg. I tried to drop to 75mcg T4, but couldn't even tolerate 100mcg without getting ill. So I took 112.5 for a few months, but in the end that wasn't enough. I'm now taking 125 again most days, and 112.5 on a few days, and hoping to get another blood test soon to check the effect on the test (the effect on me is good).
My FT4 was in the middle of the reference range while I was on 112.5, having always been just over the top of the range on 125. So it seems to me that I may be converting more of it now, and I'm hoping I shall still be within range so that I don't need to have any more arguments with doctors!
Thanks for the comprehensive answer!
Did the endo give his reasoning for dropping the T4?
I'm on the 125mcg T4 now, having started from nothing 11 months ago. The GP made me go uni in 25mcg increments, wouldn't it be the same for reducing? ie, very small drops in dose at a time to allow the body to adjust.
I'd like to do what you have done and will pursue this with the GP, or endo if GP changes her mind about not letting me see one!
You said that the effect on you was good, what improved? I like the happy ending (so far) to your story, thanks for sharing it, gives me hope.
I dropped 25mcg initially, but within a couple of days I was going downhill fast. So I carried on with 125mcg until I began to feel some effects of the T3. After a month, I felt some effects, and dropped to 100 again.
I lasted a few weeks on 100 before going downhill again, and then went up to 112.5. This worked for a while, but about a month ago I was once again going downhill. I put up with it for a while, but eventually I was nearly in the same state as before I began the T3.
So, I'm now starting to improve again.
The things that have improved are that I have more energy and stamina, my skin is not so dry or itchy, I'm very slightly warmer (but still frequently well below normal). My digestive system now works better than it has since I first had thyroid problems about 35 years ago. I can cycle with greater ease, and do long distances without feeling totally knackered - just feeling appropriately tired and exhilarated.
I also feel better psychologically. For many years I had experienced a strange sense of depression and anxiety, for absolutely no reason. This disappeared within a few days of starting T3. This and the digestive improvements are utterly amazing in terms of quality of life, and both should help to prolong my life as well. Not things to be ignored in my book!!!
Another really - I nearly forgot - big thing (and vital for health) is that I sleep much better. Yay!!!
We really should not have to suffer these problems just because doctors don't understand thyroid physiology or treatment. Thank goodness for the internet, which allows us to learn from each other and buy the drugs we need from far flung places!!!
Good luck with your treatment. XX
Great, till he put down NDT, & called me a difficult patient group! >
He was particularly scathing about Stop the Thyroid Madness... Which he thought was a difficult group.... Hmmm.... Problem is if we raise our heads above the parapet, we get dismissed with the threat of not being allowed to make our own choices, If we dont complain and challenge, then the endos say everyone is happy.......
Do we challenge and get dismissed.... Has there been any response to the open letter which was written recently? Or do we keep quiet, work it out for ourselves and thus be allowed to continue self treating and quietly changing the opinions of one doctor at a time? Its a difficult choice..... But demanding fair treatment for everyone , whilst right, doesnt really seem to be working.
G
Colin's got a very patronising, "don't feed the monkeys" attitude!
I'm not going to stop taking NDT, it makes me feel better. I wonder if I like feeling thyrotoxic? I definitely like not feeling cold, & being able to eat normally!
Well you have a biased psychologically distubed view because you are a member of one of those difficult patient forums, where members like the symptoms of being thyrotoxic, - palpitations, trembling hands, heat intolerance and damp sweaty skin apparantly.... 🙄
And so do i. So i wont be giving up my ndt ... Lol....
Xx. G
Does NDT freeze?
This made me so fearful, I'm going to start stockpiling.
M
You can freeze it. It has to be wrapped in such a way that it is kept absolutely bone dry. As you know many things will get covered in condensation when you take them out of the freezer, so prepare for that as well.
If the tablets get wet they will crumble and rot.
Thanks HB!
If they were frozen unopened, would that keep them dry, or would I need to put more packs of that silicon stuff in?
I keep my current bottle in the fridge, & get two weeks' worth out. I'm aware of how fast they absorb moisture, as I put a few in a mint tin to take on holiday, & they stuck together.
M
I've frozen some in their original packaging in the past and they were fine. They'd been in the freezer for about 12 - 14 months I think, before I started using them.
I keep all my T3 in the freezer as well, and so far I've had no problem with it. I keep some in my fridge too. But the T3 of course is in a blister pack, so that may be helpful.
I've got an unopened bottle which is wrapped in bubble wrap or clingfilm, can't remember which, then the whole thing is inside a plastic tupperware type container. I don't disturb it, and to be honest I'm just keeping my fingers crossed it is okay. It's worked before, so I'm hoping it will work again.
I think his remarks about STTM may have been in response to these links on Janie's site :
diogenesRemembering
Well, this forum was not in possession of the overarching review we put out in late November in Frontiers in Endocrinology. I suppose even when in possession their tune would still be the same - nobody in medicine will say "mea culpa" publicly, even if it in future makes them rather ridiculous in the King Canute mode. Regarding the review F in E say it is in the top 5% of papers (i.e. within the top 100 of 12600) that have ever been read there. The interest is phenomenal. "Wonderfully well written" was one communicants opinion. And now to follow up, we're trying to put together a paper that indicates that even in a subgroup of healthy people there can be potential stress and strains that only make themselves known (as per people in this forum) when disease strikes. This means that some people though healthy are "less firmly balanced" than others. It doesn't shown then, but will in disease. This will be hard to sell, because I think it shows that "strain" may start at TSH = 2 and above even though someone is classically euthyroid.
The link to the paper diogenes mentions above is :
Abstract : journal.frontiersin.org/art...
Full paper : journal.frontiersin.org/art...
And for more of diogenes' work, see this page :
thyroiduk.org.uk/tuk/resear...
Just one comment here. One of the opposing sides is right (100%) and the other is wrong (100%). No getting round that or temporising for me and the team or the others. The losers eventually disappear from sight as if they never were. Proper science is the hardest taskmaster you can think of - "if you can't stand the heat get out of the kitchen" as the old saying goes. It's winner-takes-all (and I hope that's me and not them). Trouble is that medical science often isn't science in that sense at all but merely reinforcement of prejudice without standing back and saying like Oliver Cromwell "Think in the name of God you may be wrong". That is, testing your ideas to destruction is how it should be done. And if they implode, admit it.
oh dear........and am afraid that W is the chief wig endo in my area. How can they still say that they won't talk about NDT!! I can't bear to listen ......at least Colin admits there is a subgroup that needs Liothyroine & benefits!!
And the Internet......well how dare we gain knowledge. Healthism is the explanation I guess I can expect to receive for knowing my subject and because tis true am sceptical of doctors with good reason -well yeah because many know very little about hypothyroidism. Interesting that they accuse patients of calling them mad doctors due to us having too high expectations!! total thyrodiectomy doesn't need combination therapy -Levo will suffice perfectly well.
And the circadian rhythm? Well yes would be great to use but there isn't a suitable preparation that will deliver at the correct time -anyone ever heard of an alarm clock?!!! But once a suitable medication is developed and trailed......
Oh and consultations are tiring with patients who are dissatisfied on T4 -really? they should try living with the outcome of their prescribing as a patient!! And Colin's a saint for putting up with those two clinics of patients where he looks at T3! Snigger snigger from the audience!! Their attitude is so scary!! It reminds me of the experiment whereby people were encouraged to give higher and higher doses of shock treatment even to the degree of people being in terrible pain and still doing it because they were told. The vote at the end was done openly - they had to put their hand up if they were opposed......not very scientific Mr Wheetman!!
Finally the increase in use of T3 in other countries where it's permitted couldn't be due to it being needed? No it's seen as prescribing that's got out of hand!!! On what evidence? OMG....
Will stop going on......
Going for a long walk now to calm down!! So glad I don't live in their world!!
80% I think raised their hands in Agreement with Dr W.
Professor Dayan must be one of the most sensible doctors in the UK. We should write to him saying how much we agreed with him.
20% for and 80% against... Before the argument, sorry, debate even started... A lot of, mostly inaccurate, hot air in between... 20% for and 80% against after... No change there then. Just what was the point of the debate/argument??? Seems to me they were talking to a bunch of closed, brain-dead minds. And that's in charge of our well-being and health... God bloody help us all!!! If any other walk of life showed so little regard for another's welfare or life, we could sue them for every kind of negligence, malpractice etc. under the sun, and we would walk away richly rewarded for their 'ill-treatment'. But because people like this are recognised by their peers as actually being at the 'leading edge of their profession' the very people they are making ill cannot touch them. I am so angry I would like to challenge Weetman with pistols at dawn! What an arrogant, slimy piece of ignorance!!!
It was interesting that the first Dr, Bill Fraser, who spoke at the end of the debate raised the issue that giving T4,
" completely oblated the ciradian rhythm. T4 ingestion gives different Free T4, T4, TSH profile, liver enzyme function and T3".
Therefore, why was this point not raised by the others, and why then is Tony Weetman so set on the importance of T3 circadian rhythms matching, when the others are already put out of sync by taking T4?
These were presumably eminent endocrinologists, with presumably scientific minds, who to my mind, have seriously missed an issue..... a very important issue, given that Tony Weetman would indeed prescribe a T3 tablet that fitted the circadian rhthym.
The circadian rhythm of FT3 by Weetman's own group is frankly pifflingly small (5-10% or just above measurement accuracy). Nothing like as big as the TSH rhythm that precedes it. Losing the FT3 rhythm in my opinion matters not at all in therapy.
From Bill Fraser's remarks, my undersanding is that all the thyroid hormones, are put out of their circadian rhthyms once T4 is ingested ....so how can any T3 tablet be expected to match a no longer existing circadian rhythm?
Have I misunderstood?
If I have understood correctly, then Weetman has defeated his own argument.
What about Paul Robisnons work using the circadian to support the adrenals? He seems to be finding it does help -so loosing the ft3 rhythm does matter for some....
The problem is once you've lost the close control by losing thyroid activity, the circadian rhythm for T3 (very small) is lost as well. And you can't easily get it back artificially to exactly mimic what went on naturally. I'd like some proper controlled experimental evidence to back up Robinson's work here, because otherwise it could be dismissed as merely coincidental.
Diogenes, Paul Robinson would also be in favor of some properly controlled experimental evidence but no one is interested and he is not rich. Science doesn't even believe that there are people who don't recover their health until they get on T3 only. It is a hard battle as you are very familiar with. Until then all we have are the hundreds of patients that have achieved similar results using CT3M. Repeatable results used to count for something. We have millions that do better on NDT and yet our validity is still denied. I'm afraid it will be long time after both our lifetimes before CT3M and T3 only are investigated. It's a step at a time I'm afraid. We are lucky to have the work that you and your colleagues have done, at least we finally have someone pointing in the right direction. PR
I read Robinson's blog and at first didn't understand how you could take T3 in the night before you woke up. Seemed an impossible sleepwalking task to me.I presume he means you wake up in the middle of the night, take T3 and then go to sleep again. I don't regard that as circadian in the strict sense, only timing of dose. I've no problem with that as cortisol is at its lowest around 4 am and if you don't get stimulated up by morning then something is wrong. I strongly believe in spreading T3 over the day to even out its levels. I don't believe in the idea that one dose simply activates the cells mechanisms and that these last over the whole day before you take the next dose. The turnover of stimulated proteins in cells can be very quick compared with a day and you could be in deficit long before the next dose - T3 only has about a 1 day half-life.
Diogenes, you only take part of your dose in the early hours and then spread the rest out over the day. How soon you take it before waking and how much are the two things people use to adjust the results. A few people, like Dr. Lowe, seem to be able to take it all at once but he was not using CT3M, he took it in the evening, 150mcg I believe. Dr. Lowe had some obvious thyroid hormone resistance.
By far most people on T3 multi-dose, 3-5 times a day. Again, biochemical individuality, there is no one size fits all. Paul has had hundreds of people able to get off taking any adrenal hormones by using this method. The T3 seems to be necessary for the adrenals to wake up and produce the required amounts in the morning. When people are hypo it apparently disrupts the normal circadian rhythm, not too surprising. PR
What kind of Luddite monster makes the claim, 'We have difficulty with access to the internet' ??
Presumably only learned strutting cocks like W should be allowed to use the information superhighway ?
Medics assistance with managing my hypothyroidism ? Ova. 
And if it wasn't over, I'd be bl**dy dead. I can't begin to quantify how ill I felt on T4. Would love to know the pharma bill for all the other medicated symptoms we hypos suffer because we're not sufficiently/correctly medicated for our hypothyroidism.
But then, the thing that this conference most ably demonstrated to me was this - most medics are intransigent in their view that TSH is the golden yardstick and T4 an adequate solution. I would have liked one shot, just one shot of the audience. I have not a scintilla of doubt that the fairer sex were underrepresented.
Thanks so much to Lorraine and PR4NOW for posting
I worked out i was ill because of lack of t3' without the internet...... So maybe the luddite a few years ago woukd have banned libraries?
Kudos to you galathea...where did you find the energy ? What a legend ! x
PS I dunno about the libraries, tho. Many libraries have gone because of computers, but I think any Luddites about now would struggle to dispel the ethos, 'knowledge is power'. Although I warrant they would also subscribe to this - 'the (medical) lunatics have taken over the asylum' if they were hypo...
It was all so vague and wishy-washy. I had the feeling that neither of them really knew what they were talking about. No mention of symptoms, or inability to convert. What came over loud and clear was that neither of them has ever really listened to their patients, nor looked at them, they Don't really see them as living creatures with feelings, and minds of their own. And neither of them really care about their patients welfare, just their own points of view. Maybe I'm doing Dr D a disservice, but he didn't totally convince me, and I Don't think I'd want him for my doctor, anymore than I'd want Weetman! But maybe that's just me...
99% of the medical profession are so narcissistic that they haven't cottoned on to the idea that they're there for our benefit, & seem to think patients are their own little lab rats.
Grrr...
That is so true! lol They think we owe them some kind of allegence and should be grateful for the little attention that they deign to pay us, how dare we complain it isn't enough? They would like to reduce us all to the status of some sort of medical Oliver Twist!
It seems our government would like a lot of us in a workhouse!
On the Streets, more like it - workhouses are too expensive to run!
Haha that is really rather funny.....Inite they went in ab It the expense of T3.....maybe they're worried it will burst their budgets. Far better to leave patients poorly. Beside which we'd only want more and wouldn't have a modicum of good sense if we're given reign to take what we need!! I hope the all develop hypothyroidism that isn't responsive to Levo and they can languish in poor health to keep their TSHs looking 'rosie'!!
I've hear Dr W speak a few times now via the net -he never presents good researched facts but makes statements as if they are facts!!
That is the best that I hope for them!!!
Thank you.
I don't understand why they held a debate in which the outcome was already known.
The title of the debate referred to "...patients ...[who] do not respond to levothyroxine". Dr W referred to "... people [who] feel dissatisfied on T4". Were they even discussing the same thing?
Thanks for posting i have been looking on line since November for the outcome of that debate.It makes you so mad .I think MR Weetman should have a TT and get put on Levo only see what he as got to say then.Because in my mind how can anybody who as not got a thyroid disease know what its like and dictate .I think we need to take a thyroid army to Mr Weetman .
Maybe the 80% who were against are endos who are Mr Weetmans yes men and women.
I'm going to end there incase i swear,He must now be one of the most hated men in the thyroid community.
I'm so thankful for the internet and this forum. They all scare me with what they think. Gives me night mares.
So after watching that is there anyone willing to give up NDT or T 3.
humanbean• in reply to
Not me! I've only recently started to laugh occasionally in conversation with my husband. I'm also beginning to find my sense of humour returning. It went AWOL at least 10 years ago, and it was never very strong in the first place
greygoose• in reply to
I won't give up my T3 - even though I am taking 'excessive' amounts (according to Weetman, anyway, he'd proably have a heart attack if he saw what I've taken in the past!). I've just started singing again, spontainiously, and waking up laughing when my dog jumps on the bed. Don't want to give that up, either!
HarryE• in reply to
Nope!
annie-7• in reply to
Nope! In fact I was taking my afternoon dose of T3 while watching the "debate"!
Beyond a doubt, no, Jobeth. Whilst quality of life (QoL) is mentioned in the debate, it certainly isn't given nearly enough weight.
At the moment there is a debate taking place about the lack of new antibiotics to stamp out antibiotic resistant 'superbugs'. There is a report which claims that worldwide, this may cause millions of premature deaths and cost the world economy $100 trrillion in lost global economic output by 2050.
telegraph.co.uk/finance/eco...
Now that got me thinking - it's a shame, isn't it, that there are no figures available for the many lives left in limbo, the hundreds of thousands who have had to give up their careers, becoming perhaps dependent on the state instead of contributing to it, because thyroid disease is considered, 'sorted - so move on, there's nothing to see here...'
Unutterably disgraceful and indefensible
Nope definately wouldn't give up NDT.
I'm one if those terrible patients who has been known to self prescribe in the past. Personally I would prefer that then being left poorly as under prescribed or put on inadequate medication for me like Levo, so left to gradually get more poorly, unable to exercise, gain weight, get higher blood pressure, suffer constipation,have my vision affected, have ongoing indigestion ,be unable to think straight, suffer my hair fall out, have poor hearing, dry skin, b
Eye ding gums, swollen tongue, be in terrible pain in my joints and body and be unable to sustain any activity for long. All that would be what I could look forward to if Proff Ws approach of keeping my TSH well in range was to be reintroduced to me. Hmm......not be doing that then!!
Patients who have "normal thyroid function tests" but insist they should be treated for multiple thyroid symptoms actually have "somatoform disorders."
-- Anthony Weetman, MD, UK endocrinologist
And he would know, er like how? Failing on the first premise... his ability to get into 'minds' should, for me, start with his own failed learning patterns 
Stick to what you're meant to know... limit your opinions!
The first mistake is using the plural "tests" - a single TSH test is not "tests". I'd argue that "tests" in that context should mean at the very least FT4 and TSH - and really should include FT3 - hence also excluding multiple TSH tests from being "tests" - if you see what I mean.
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