Reply from CMO

[UrsaP]

Dear_______,

Thank you for your email to the Chief Medical Officer regarding the prescribing of liothyronine. She has asked me to reply on the behalf of the Department of Health.

NHS England plans to lead a review of low value prescription items from April 2017 and introduce new guidance for Clinical Commissioning Groups (CCGs), with a view to saving NHS expenditure in this area. The guidance will be developed in partnership with CCGs and clinicians. NHS England will publish a consultation on the draft guidance in the next few months. For more information, see NHS England’s website at: england.nhs.uk/2017/03/guid....

Guidance to restrict prescribing of products such as liothyronine would only be introduced after the consultation. In the meantime your doctor is able to prescribe any product, which they consider necessary for your treatment under the National Health Service, as long as that product is not included in Schedules 1 or 2 to the NHS (General Medical Services Contract) Regulations 2004. Liothyronine is not included in those Schedules at present, so you doctor will be able to continue prescribing it.

As part of considering what is appropriate for a patient, we do ask prescribers to take account of the cost but not at the expense of the clinical benefit to their patient. So where the cost of a medication significantly increases it would be reasonable for them to consider whether there is a suitable alternative and make a change if a suitable alternative does exist.

Yours sincerely,

Lee

[UrsaP]

Kitti1 Kitten1978 shaws Rapunzel lynmynott LouiseRoberts dang Marigold Clutter SeasideSusie MajorTom humanbean Hidden nightingale-56 Angel_of_the_North

FYI

Sorry, not got everyone's name here, trying tot remember off the top of my head.

[Kitti1 in reply to UrsaP]

Good and bad I think. So we are getting a consultation ? But will it be an open one like the one on the department of healths website for gluten free foods ? The last paragraph I get the feeling says they're is a cheaper alternative - levo ! And that's probably why new and old patients are struggling to get a prescription for t3.

[shaws in reply to Kitti1]

We need some Dr Skinners and I wonder if they'd speak to Dr Peatfield, trained in diagnosing etc without blood tests.

We need completely impartial doctors - not the ones that keep millions of, mainly women, unwell and who are happy to prescribe anti-depressants (in place of T3 - Anti-d's cheaper) and who also tick the patient off for gaining weight ignorant of the fact that weight gain if underdosed/undiagnosed is a clinical symptom.

They have to have on their Clinical Commissioning Group, Lyn Mynott, and Advisers to TUK and we have some sensible ones plus Dr Kendrick.It should not be a one-sided clinical commissioning group.

[UrsaP in reply to shaws]

I think I need to reply asking them who the 'clinical' will be? ...

[Rapunzel in reply to UrsaP]

healthunlocked.com/thyroidu...

FYI

Maybe some cut n paste might work ? ✈️

[shaws]

It is the suppliers of T3 who have to prove how they arrive at the cost of T3 and why the cost has risen exhorbitantly and usually the Clinical Commissioning Groups - due to the fact that many patients do fine on levo - may insist that levo alone is to be prescribed. Also, I understand T3 has to be licenced. I think there are a number of members who take T3 sourced by themselves and are well on it and very much improved. They don't want to go back to a hormone which makes them ill.

If mother nature provides more than T4 as a hormone, NDT may be more beneficial and should also be allowed (sometimes we have to try more than one to find a suitable one) as well as T3. Misinformation shouldn't be touted about NDT which has been proved for many years.

I hope those who make decisions are absolutely neutral in their views and are hypothyroid who don't get well on levothyroxine. That would be fair, I think.

As a matter of fact there was some change within the UK T3 which gave me some unpleasnat symptoms which went when I switched.

[Justiina in reply to shaws]

Is T3 not licenced in UK? If only one manufacturer has licenced it in UK thats the cause for high price as no competition and they know its paid no matter how much it costs as long its prescribed. If NHS denies prescribing it they might not produce it If they realise most cannot afford it privately.

If no other manufacturer licence it as NHS forbid to prescribe it you end up in similar situation than in Finland and need to apply for special licence.

[humanbean in reply to Justiina]

Yes, it is licensed. It's in the British National Formulary.

evidence.nhs.uk/formulary/b...

I think it might only be viewable by someone in the UK though.

The health industry just says whatever is convenient to get patients off their backs, like the lie about T3 not being licensed.

[Justiina in reply to humanbean]

Yeah couldnt see it.

They do not bother to get T3 licenced over here as long as its covered ,its paid by tax payers money! They get their money anyway. Getting it licenced would cost them more as the market for T3 is small over here.

Doctors think T3 is dangerous as its not licenced.

Patient pays for applying , medical board will evaluate the need for licence. Its never denied as T3 is not dangerous and your doctor recommends it. We cant change that If manufacturer wont get the drug licenced.

For now T3 is covered like any other medication, but it can change any day. So you pay 10 to 20% of the price until you reach the limit what meds can cost for a year. NDT isnt covered anymore so that costs a lot.

[shaws in reply to Justiina]

We have only one licenced T3 in the UK. There is another two available which would have to be prescribed on a named-patient basis but doctors are reluctant to do so. Any mishap would fall on them.

[UrsaP in reply to humanbean]

I came across some 'consultation' on D of H about misleading info...being a crime. Wonder if it would apply to rubbish NHS come out with re T3...misrepresentation.

[humanbean in reply to UrsaP]

If you could find the link again it would be interesting to read.

[UrsaP in reply to humanbean]

humanbean Not sure how to get link on here (sorry bit of a ludite)

gov.uk Look under 'Consultations' and search under 'Misleading information'

seems to refer more to 'care providers' but...could be applied?

[humanbean in reply to UrsaP]

This link?

gov.uk/government/consultat...

[UrsaP in reply to humanbean]

Thanks humanbean That is the one... I'm out of it, been travelling and tired....being dim!

[helvella in reply to Justiina]

What we cannot know is why no other company has seen fit to get another product licensed. Sanofi in their French and German companies produce two different liothyronine products which would seem to be appropriate. We cannot know if they applied and were refused or have not applied.

If you already have a product and can fairly straightforwardly add a significant percentage increase in sales for little investment, it would superfically appear to be an obvious step to take.

[Justiina in reply to helvella]

Over here in finland T3 would be licensed in heartbeat as it is proper med so I assume it's rarely refused anywhere. But as it is expensive it might not be tempting for some manufacturers.

But we have to remember that people who make decisions might also sit a board of a company or be a stockholder.

Over here in finland head of psychiatrics is a board member of a medical company and he recommends antidepressants of that company. It's public information but no one does nothing about it!

So anyone with detective skills should go digging dirt and see who benefits from situation over there. Maybe there are connections that explain it.

[UrsaP in reply to shaws]

HI shaws , when did the changes take place? Because I started to have symptoms, similar to those I experienced on T4, I was starting to get worried as didn't want to go to GP, in current climate, with it, as thought they would pull the T3 and try force me back on t4. But when chemist switched to German make, all symptoms went again...TG!

[UrsaP in reply to shaws]

shaws The reason they can say 'many patients do well on levo' is because they ignore all the symptoms levo can cause when it doesn't work - i.e -fibro, migraine, CFS etc....label it as something else and refuse to acknowledge linked to thyroid and/or T4. Refused to believe me, for years. Adamant that it was NOT my thyroid.

Did prove it. But bet there is no record of such.

Within days of stopping T4 all symptoms went, within days of reintroducing it, all back - several occasion. I'd bet my medical records shows something like 'optimally medicated' during this time.

[Justiina in reply to UrsaP]

In the end there are only few studies of how many does well on levo only. As some have gotten used to their symptoms they never imagine it's because of poor response to levo only. Wildest estimation of people not doing well just on levo only is upto 40% which might not be so wrong in the end. But on the other hand some have so mild symptoms it never triggers the question does it affect their wellbeing so much.

[UrsaP in reply to Justiina]

Justiina And the Dr convince them that the 'other symptoms' are not in anyway connected to Thyroid/ T4. You are right they may even have just got used to aches and pains, probably putting it down to age or something. Too many people are still totally reliant on the 'expertise' of their GP's. Not realising just how poor the knowledge and training in this area is. and most of the studies seem to be small scale and geared towards a specific outcome.

[Justiina in reply to UrsaP]

Exactly.

I have so many times heard that thats way it just is. Like I am 38 and two years ago I went to local hospital and met the doctor Jerk, nice way to call him, often I call him failed abortion, sorry for being so rough. But anyways he figured its normal I cannot exercise as I am not so active anyway. End of story, nothing was done.

He didnt even ask my history, which would have revealed that I have been very active ever since 4 years old, xcountry skiing, downhill skiing, taking care of big stable of horses at very young age because the owner was a drunk. I have never ever been couch potato before falling ill. Thanks to that I am still relatively fit, I managed with things many wouldnt or wont as they have not had the privilege to be physically active as I was or have never been interested. I can manage many things my pretty much healthy 23 year old cousin cannot as their generation was not raised up being that active.

I asked doctor Jerk is it right that at this age I cannot do stuff people half older can do, for example my dad who is 70 goes for a walk EVERY morning, for 5 kilometers, or now during winter skies 7 kilometers EVERY morning, despite the fact he has severe psoriasis, replaced knee, poor back, asthma and he has had clogged arteries on his thighs. My uncle who is 62 has had heart surgery can ski 300 to 800 a year and play volleyball and goes to gym. And so on. Doctor Jerk looked at me and was like, oh but do not compare yourself to other people, you are depressed as depressed people compare themselves to other people. I said I am not comparing myself to anyone except making valid point that a person at my age should not be in that bad condition. He refused to listen to me.

So I was signed off as a person who just is in bad shape, because , hey thats the way it just is. End of story.

[UrsaP in reply to Justiina]

Justiina Exactly my point - if they can blame it on 'other' things they do not have to recognise that T4 is not the miracle drug they make it out to be... and they can justify their poor treatment.

We are having to put up with this sort of substandard doctoring, some of us for decades. Most of us would love to be able to trust and work with our doctors to correct and manage our conditions, but how can we when we are ally faced with this blinkered and superior attitude.

Most CCG's seem to be promoting patient/Doctor partnerships but to me is seems - as long as we patients listen and agree with the Gp's? When they start listening to us then the partnerships will begin, and then we can eradicate this 'battle' we seem to have landed in. It is not us under/mistreated Hypo't's who instigated this battle.

[Justiina in reply to UrsaP]

Exactly! it is not patients fault!!!!! Thats what I have been saying for so long time. Like over here FInland one endo said that 30 % of current patients are taking levo for no reason. That the doctor just gives in when patient demands medication. So they blame the patient!

How about doctors who practically feed you ad's after 5 minutes? Whose fault that is? Hardly any patient goes begging for SSRI's, but for some reason they are given very easily.

Statins, pain killers? Most are given very easily.

So it only applies to hypothyroidism, those patients must be very manipulative , very skilled to trick the doctor to give medication.

At age of 24 I was practically forced to take ad's and benzos. Doctor said to me that I either take the meds or I will go to psychiatric ward. I was too young and naive and scared and anxious. So I believed these are my only options.

How a patient can intimidate the doctor to prescribe thyroid medication? What you have against the doctor? Nothing, but doctor has all bullets to use against you.

[UrsaP in reply to Justiina]

Justiina I know. And it is all wrong. I was given ad's once - waste of time/nhs money - like all the other injections for pain here and there etc. Which kept returning until I ended up on t3 only! I also maintain that had I been medicated with T4 36 years ago, I may not be relying solely on t3 now! (Went untreated for about 10-12 years - despite seeing an endo - who said was/wasn't something over 2yrs! (Hashi's??) The fact that there WAS something!

I think they are trying to kill us all off before we create a huge scandal by realising just how many of us have been mistreated! If they get t3 off the market asap, and we all pop off prematurely they won't be found out!! - Just another of my 'mad' conspiracy theories...(ha ha....)

[Justiina in reply to UrsaP]

Never say never If practitioners of functional medicine have dropped dead in quietness then...

Fortunately we have access to all necessary data and they can't deny us from getting that information. Eventually we will win this war, mark my words.

Eventually they have to admit we are right.

I hope Trump will do what he promised and kicks big pharmas ugly butt hard. Otherwise I do not care about that dude but I hope this promise he keeps and executes soon. Will help us big time.

[MajorTom]

Excellent !!

Cheeky question. Any chance of a photo/ screenprint / email of the original please ? - with your details covered 😊 - be great to include with my letter. Pic of the original removes any doubt that I've faked it!

[UrsaP in reply to MajorTom]

MajorTom Sorry for delay, been travelling. If you can tell me how to do that I can certainly try.

[MajorTom in reply to UrsaP]

Hi UrsaP, thanks, hope you had a good rest.

Is the reply an email? If so I can message you my email address. There should be an option to forward it.

If it is a letter you can either scan or take a photo. Not sure if there is an option to attach files here so maybe email is best again.

Alternaticely the t3 FB page might be an option as you can attach files and photos directly to a post.

[katey]

Hi everyone, this response is actually brilliant. The final paragraph has it nailed ....

"As part of considering what is appropriate for a patient, we do ask prescribers to take account of the cost but not at the expense of the clinical benefit to their patient. So where the cost of a medication significantly increases it would be reasonable for them to consider whether there is a suitable alternative and make a change if a suitable alternative does exist."

Bearing in mind that CCG's can only issue guidelines and recommendations to GP's (and not actual INSTRUCTIONS) this is the most powerful and positive thing I have read in a long time to support the t3 prescribing debacle.

Good work Ursa! Thanks for sharing.