NICE guidelines now out

[diogenes]

The final guideline of NICE on thyroid disease is now available. TUK will probably have the details. To my mind they are still stuck in the mud of redusing to budge unless randomized clinical trials are done to show combination benefit over mono therapy. I quote:

Combined levothyroxine and liothyronine vs levothyroxine alone

There was evidence of a clinically important benefit of combined levothyroxine and liothyronine in terms of two aspects of quality of life, although both outcomes came from short-term follow-up studies. A clinically important harm was associated with the combined use of levothyroxine with liothyronine compared to levothyroxine monotherapy in terms of one aspect of quality of life and TSH suppression. There was no clinically important difference between the two treatments in terms of general health-related quality of life and five different aspects of quality of life. Furthermore, no clinically important difference was seen in either depression or symptom scores. Overall, the committee agreed that the evidence was generally suggestive of combined therapy having no important effect on quality of life and the small and contradictory benefits and harms in subdomains of quality of life were more likely to reflect the low quality of the underlying evidence.

The committee were aware that the use of combination therapy is a critical issue in hypothyroidism. Based on the evidence available and the high costs of liothyronine (see section 1.7.2) the committee could not recommend the routine use of the combination therapy for the general population of people with hypothyroidism. The committee noted that in their experience some people do not appear to achieve sufficient response to levothyroxine and agreed that it is plausible that in this subgroup the addition of liothyronine may have greater benefit than in the general population alone. However, there were no studies exclusively in the population of people who had failed to respond sufficiently to levothyroxine. In the absence of supporting RCT evidence, the committee agreed it was not appropriate to recommend the routine use of liothyronine either alone or as combination therapy even in this subpopulation. However they made a high priority research recommendation for trials conducted in this subpopulation that could potentially support guidance in the future.

[MichelleHarris]

Thank you for posting. Is there an unhappy button on here?

[JGBH]

Thanks for your post. Really depressing to see that nothing has changed. It points to the high cost of T3 rather than the true benefit to patients’ wellbeing.

[diogenes Remembering]

If you look at the references to support conclusions, you'll find that ONLY the poorly designed randomised clinical trial reports are used in evidence. As none of these trials were worth the paper written on, (and acknowleged as that) it's no wonder that no conclusions were drawn.

[stiltzski in reply to diogenes]

If that is the case, can’t someone with clout such as yourself write to them to highlight all the other studies that have been done which go against the monotherapy view? Surely NICE does not want to be seen to be ignoring new studies completely?

[diogenes Remembering in reply to stiltzski]

I'm afraid we are dealing with blinkered donkeys! They are only capable of looking straight ahead - ie they rely only on clinical trials to make their case. Not on studies outside that narrow band. Since the trials failed, because they were badly thought out, they cannot free themselves of the fetters of "the only way is RCT". A closely defined remit was their raison d'être for proceeding and this remit failed because it was illfounded. I come to the conclusion that they do not understand things outside this remit and therefore close eyes and ears and brain to anything that confronts it.I have just defined fifth raters.

[stiltzski in reply to diogenes]

I realise that the profession is full of blinkered donkeys (great expression) but my husband, who is a lawyer and has seen the difference that being on T4+T3 has made to me, says that this has got to be addressed, maybe through legal channels It has been going on for too long and the longer it continues, the worse the situation gets. There are so many people on this forum who a) have not done well on Levo alone and b) who have had remarkable results on T4+T3 - when they have been able to get hold of it. I was a patient of Dr Skinner. Who defended him in the BMA proceedings? If nobody knows, it might be worth talking to any medical negligence lawyer who does pro bono work? I am away on holiday at the moment and made a stupid mistake and did not bring enough medication with me. It is incredible how quickly symptoms return when one is not optimally dosed. And NDT is BANNED here in France, so no way to get what I need here! I know that if I went to my GP on my return to the UK and told him how quickly I went downhill when not on my normal dose, he would totally dismiss it. This is a scandal and has been going on for far too long. We have got to do something about it! The Nice guidelines are a travesty.

[Wetsuiter in reply to stiltzski]

whats the Uk equivalent of 'class action'?

[stiltzski in reply to Wetsuiter]

Class action...but maybe what we need is a judicial review?

[shaws Administrator in reply to diogenes]

Donkeys have probably more compassion and sense than those above who have absolutely no knowledge of those who cannot take levo.

[Hillwoman]

This was entirely predictable, was it not? They've cherry-picked (perhaps the wrong word for something that's rotten) the evidence so that the current paradigm remains intact. Otherwise, the profession would have to admit it had been getting diagnosis and treatment wrong for several decades. And we can't have that, can we?

[Hidden in reply to Hillwoman]

Rotten cherries! Absolutely

[Musicmonkey]

My heart sinks

[diogenes Remembering]

I sometimes feel for the poor creatures: sitting on the fence for so long numbs you from head (brain) to toe. A case of "holding on to nurse"?

[sy28 in reply to diogenes]

Dear diogenes, as a follower of your research, I admit I am feeling just as demoralised as everyone else but trying to console myself by thinking these are guidelines only ... they do not have to be followed. Am I wrong? The Disclaimer even makes good reading. In a small-print footnote, Nice admits guidelines can be withdrawn. Based on this admission and the guidelines' lack of evidence - isn't there enough compelling evidence coming forward to have this report withdrawn?

[shaws Administrator in reply to sy28]

It seems to me that that the professionals have to follow the guidelines, otherwise we (the patients) wouldn't have had such a shock that they suddenly stopped prescriptions (no warning) for T3.

I know of two doctors who had to appear before the GMC due to them offering patients other than levothyroxine. This caused both doctors enormous stress and one resigned his licence altogether. The other had about three appearances before the GMC and one of his admirers did a calculation and it was so ridiculous. I cannot remember exactly but the 'odds' were something like thousands to 1.

There was no such thing as preparing those who were well upon T3 or NDT and unwell on T4.

The professionals do not believe that many remain unwell on levothyroxine (I'm one). They appear to have been directed that levo alone was the 'choice' of the professionals. They had also previously removed NDT - again which many felt well upon (this was done through an untruthful statement) and people forced to source their own thyroid hormone replacements.

The professionals have also lost track of knowing clinical symptoms nor the fact that thyroid hormone replacements are to relieve these symptoms. Their preference is to look at the TSH alone and make their decision to increase or decrease dose - patient is never asked how they 'feel' on a particular replacement (T4 or T3/T4 or NDT) but have no choice of a trial.

The human body seems to be treated as if it was a man-made object and that all people who have hypo just need levo to restore their health according to the TSH. Unfortunately if TSH is very low, their assumption is that patient is now hyPERthyroid and reduce dose and ignore the fact that symptoms return.

They also fail to understand that the TSH is produced by the pituitary gland which tries to flag the thyroid gland to produce more hormones.

By the time the NHS pays for the additional prescriptions for the remaining symptoms (and they do not improve symptoms) they've spent more than prescribing T4/T3 or NDT and patients returning more often to the surgery expecting help. Many patients have lost their jobs too.

[sy28 in reply to shaws]

Dear Shaws, thank you for your reply, I sincerely hope this NICE guidance is successfully challenged and withdrawn.

In the meantime, the following extracts from Disclaimer, found on Page 1 of every chapter in the NICE guidance, become very relevant:

1. 'When exercising their judgement, professionals are expected to take this guidance fully into account, alongside the individual needs, preferences and values of their patients or service users.'

2. 'The recommendations in this guideline are not mandatory.'

3. '... the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and, where appropriate, their carer or guardian.'

In summary following this new NICE guidance is neither required by law nor compulsory. If the guidelines are likely to make a patient ill, they should not be followed. The patient's circumstances are paramount.

[shaws Administrator]

Do we have to remove their thyroid glands first?

[Gingernut44 in reply to shaws]

Yes, preferably - until their thyroids are removed, they cannot know anything about the symptoms of undermedication

[Lora7again]

Typical they have no idea as usual!