Thyroid UK has seen a response from NHS England in regard to the question of whether T3 has already been de-prescribed even though the consultation does not end until October, something that has had us all very concerned over the past few days. Their response was:
An NHS England spokesperson said:
“NHS England is currently consulting on proposals - drawn up with family doctors and pharmacists – to cut out prescriptions for ineffective, over-priced and low value treatments. There has been no change to national commissioning guidance whilst this consultation is underway. Helping to trim hundreds of millions from the nation’s rapidly growing drugs bill will create headroom to reinvest all savings in newer and more effective NHS medicines and treatments.”
Final guidance on any restrictions to the drugs under review will be informed by responses to the consultation, once they have been fully analysed and considered.
NHS England has been working with NHS Clinical Commissioners on proposals to issue national commissioning guidance on “Items which should not routinely be prescribed in primary care”, and this particular product (liothyronine) is included in that proposed guidance.
CCGs are able to develop their own prescribing policies and advice for their prescribers locally. Once the final national guidance is published, CCGs will need to have due regard to these changes.
It's a postcode lottery! my ccg will not prescribe for me even though I have no thyroid gland. But there are many people I know of who are still getting t3 on nhs. 😠
It is a postcode lottery and it has been suggested that national guidance will deliver equality. Shame it is the dumbing down type of equality whereby everyone is denied Liothyronine though.
NHS England appear to be in complete disarray. An email from their office clearly stated that Liothyronine was withdrawn and was confirmed by phone call.
It doesn't reassure me that real consideration will be given to the views of patients expressed in the consultation. I'm still waiting for a proper reply to my 2nd email
We believe that the CCGs are jumping the gun and so do some other bodies - I've mentioned them in the template letter to MPs. GP Online state that CCGS have no right to stop the medications in the consultation.
It seems to me that NHS statement is saying CCG's can do what they like - i.e. It's fine if they have already stopped prescribing of liothyronine.
After consultation process is completed, assuming liothyronine is withdrawn, then the few CCG's that are still allowing liothyronine prescriptions will be forced to stop.
Seems unlikely to go the other way and CCG's be forced into prescribing again
It's madness continuing to only offer Mercury Pharma T3.
The sensible question for the consultation process would be
"Why is NHS insisting on MP T3 at £915 for 100 tablets, when just as easy to prescribe EU sourced T3 at £30 for 100 tablets"
I too was phoned by a snr complaints chap from NHS England monday 7th of august and he promised to come back to me by email by the friday, nothing so far. He said his dept are responsible for allocating the funding to GPs & CCGs and that they were not allowed to stop my prescription on cost, which they have, both gp & endo been told not to. I complained about the run around i have had since the day my thyroid was removed. I also made it clear that T3 is cheaper every where else in the world including France where i am forced to take my private prescription as i cant afford UK prices.
I am very disappointed iv not heard back as he really listened, we were on phone for just over 20 mins, he told me he was snr to the GPs & CCGs and they would be instructed by him. As i am on hols i wasnt able to jot down his name as i expected a quick response from him.
I am also paid by NHS and teaching universities to give talks to final year med students about the shocking lack of treatment i received after my thyroid was removed and how it has impacted my life, he was very interested about my talks, i said if he doesnt get back to me he will be in my next talk!
THANK YOU for talking to medical students. I didn't realise someone was doing it and I'm very glad you are. If you don't mind me asking: how did you get it organised? Did you just approach a medical school and told them you wanted to talk to their students as a thyroid patient?
I was so poorly treated after thyroid removed that i became seriously ill. I told all my friends as i was unable to meet up for coffee. A friend told her friend who happens to arrange these talks for the university in Leicester, she came to see me and asked if i would stand up and tell my story, say how it affected me, where my GP & endo had failed me, i name names too. I speak to groups of final year med students and i am paid for this. Since last september i also speak to first year med students. The idea being is that they remember me and dont make the same mistakes my dr did. I will be stepping down soon as i am spending more time in france where the health care is better, so wont be available to do it. It is called 'the listening workshop' run by Leicester Uni xx
Brilliant, I'm glad they are doing that I'm sure they will remember you and learn from you. A patient coming to talk about their poor experience of care is always more memorable than another booooooring lecturer. You are a brave person - most people would find talking to a large group of strangers rather daunting!
I'm just curious: how do they react when they hear about poor care you received? Have ever had any endo-wanna-be in your audience? xx
i have had lots of them in tears, most are just gob smacked and i also get the end of meeting private talks with those saying 'omg now i know what is wrong with my mum/sister etc' as i have described exactly the symptoms someone they know is having and yet still undiagnosed. I tell them the obvs signs mucin fat, little or no achilles reflex and the fact that mine was removed and yet dr said i wasnt hypo really gets them choking. I know they will remember me and hopefully treat their patients better than i have been treated x
WONDERFUL ; ) Yeap, they WILL remember you!!! Due to your efforts maybe there is a hope for them yet... and for their patients. On the other hand, it's bloody shocking that final year medical school students are unable to recognise hypo symptoms among their own relatives! One wonders what do they teach them...
May I ask how big are the numbers of the students you have been giving talks to, please?
the same as when a dr taps you on the knee to see if it bounces up, we should also have a reflex on achillies tendon behind heel/ankle. Mine are rock solid and painful with no reflex, better since on t3 but it is a sign of being under medicated for me. Before TSH this was a typical way of diagnosing along with other symptoms x
Thank you for having done that to help people suffering from negligence from the so-called medical professionals. What response from medics did you get, if any? Cannot imagine somehow they will act differently because they are not taught enough about hypothyroidism and the devastating symptoms it leads to when misunderstood and mistreated or not reated at all.
Have you found a better understanding of the condition in France? is that via doctor or specialist or both? Am interested to know as am at my wit's end with the way we are treated in UK... I was made to understand by some people who live in France that the ywere equally ignorant and unhelpful regarding thyroid dysfunctions. I do know the medical services are so much better in France, in general, prevention being put at the top of their concerns. A more intelligent and effecctive way of coping with health issues of course.
JGBH i have a home in france and spend most the year here. I have only last week been to see a french dr, i showed her my UK prescriptions that i get filled in france and she was happy to take on the prescribing from now. She has asked that i bring in my thyroid test results once a year. She did say there has been a change in thyroid treatment in france but that it doesnt affect me as i am TT and under a uk consultant.
It is true that jnr drs have very little thyroid training and none in 2 years has expressed a desire to specialise in endocrine.
That is interesting and it seems to have worked out well for you. Do hope you keep on improving and feeling better.
It is rather frightnening to know young doctors still show no interest whatsover in thyroid dysfunctions...
It must be a reflexion on the way this topic is so badly taught at medic schools generally... Thyroid functions/pathways are incredibly hard to understand and perhaps no tutor is able nor willing to take the task on. If they were taught how important this gland is for metabolism and shown how much it affects people's lives when it goes wrong some students might then see this as a challenge... BUT as it stands there is little if no hope....
Lyn, sorry to write this on your NHS England post, but I'm aghast at the vast number of newbies requesting urgent help on HU thyroid. This has got to epidemic level. If HU is an NHS Choice site, what utter hypocrisy. There are so many people here who are desperate.
I'm sure I read somewhere that CCG's are answerable to the NHS. This seems to say they are not. I wrote to Simon Stevens at NHS England but no reply yet. My local CCG have acknowledged receipt of my letter and will get back to me in due course. Meanwhile my GP has issued a private prescription so I can buy from abroad.
i emailed them 4th august and got a phone call from them few days later, it was a complaint about my t3 being stopped, the chap said my gp/endo couldnt do that...and yet they have, he said he would be sorting it out and would get back to me...not sure im going to hold my breathe x
Although the 'Amelia' email we received appears to have been a slip up. As it looks unlikely this person would be party to what must be highly classified information, if true.
I think the wording of the consultation document says it all. Whatever the conclusions of the of the consultation are, CCGs will still be able to do what they like. I do feel the whole process is just a customer relations exercise.
"CCGs asked for a nationally co-ordinated approach to the development of commissioning guidance in this area to ensure consistency and address unwanted variation. The aim is that this will lead to a more equitable process for making decisions about guidance on medicines but CCGs will need to take individual decisions on implementation locally, ensuring they take into account their legal duties to advance equality and have regard to reduce health inequalities"
At the end of the day, NHS, CCGs, politicians, etc etc will do exactly as they desire. F..k the plebs. They are stalling, making us go round in circles, talking piffle, contradicting themselves. Sorry to be so negative, but I really believe we are wasting our time, effort & energy. They are treating us like "the little people, the workers" whilst they all sit high and mighty giving orders, lining their pockets. Jeremy Hunt is the government's representative on health; I received a reply from his minion saying basically Not Interested.
i have to say i agree, i have had so many people sit in my corner and fight for me, gp, endo, mp, ombudsman, various complaints depts and none of it has made a dams worth of diff! altho this last chap at nhs england seems pretty fired up but then they all do. When they come up against the stone walling of ccgs nhs mngrs and minions it all falls to nothing. Its not negative i think its realistic, they couldnt care less xx
I had a reply from him nearly two years ago now. I se t him one of those illustrations outlining.all the altturnatives and how we ge ignored. Sent it to my GP who sent it to JH. the reply said thank you. but if I'd had a thyroid problem as long as I said I have then I would be aware of the BTA stance on treatment! No wonder we do t get anywhere!
Agree with you... they are NOT interested because it does not serve their purpose.... They can afford private health, so why bother ... Shocking, but what can we do?
Amelia e-mail a massive error but they also confirmed it by phone to you too.
Their mind is made up.
So important Thyroid Uk and ITT push hard on this.
I cannot believe a nation such as ours is offering 1 medication only in primary hypothyroidism .... putting all their eggs in one basket .... not what I expect from a leading 1st world nation or a world class health service. It's actually shameful. 😢
If anyone has a receptive GP, it's worth asking if they'd be interested in the petition and ITT Campaign.
My GP has done an about turn and says she's happy to discuss it with her colleagues. I could have hugged her; she's taken on board everything I've told her. I know they're not all like her, but we can use the opportunity to our advantage.
I hear what you say Pamela0106 . when I phoned up the first time, the lady I spoke to responded without the email in question in front of her. so I guess a stock answer. The second lady I spoke to, with the email in front of her, said it was a mistake. I guess we will never know what exactly the mistake was, the let slip of information or giving the wrong information ?
Either which way a NHS England official statement was always going to deny it as the truth.
Sorry world class health system it is not! It sounds like it should be... only deals with problems when patients become extremely ill, so NOT a world class service excatly. Don't wish to upset you, can assure you, just fed up about the way we are treated by so called medical professionals and decisions made by so-called experts who have not got a clue!
I agree in full. No upset caused. Clearly not world class but plenty who claim it is. The same people who have no idea what it's like to suffer every single day in life and be refused the one thing that makes them feel better because of penny pinching.
You didn't oppose my view. You only confirmed and supported it x
Thank you for your kind comment and so pleased you did not feel I was deliberately "unpleasant"... People who loudly claim it is a world class service clearly do not suffer the way we do... with little hope of help.
Hyburn, I have often thought the same. It's the old story: if men were the most seriously or commonly afflicted by 'x', then there would have been a genuine cure years ago. Coincidentally, I discovered this blog the other day, on the misogyny endemic in healthcare: misstreated.org.
This has been done purely for the form with no intention of improving or changing anything at all... Why are they so reluctant in helping patients? Who or what is gaining from such an uncaring and unconcerned approach by which so many people's lives are cheer misery? Am dismayed, shocked by such negligence and damned angry.. sorry it has to be said.
Hi helvella One of our members wrote to Prof Jane Cummings Chief Nursing Officer, regarding the impending withdrawal. The email was passed, by her PA, to NHS England Contact Centre. A lady called Amelia answered the email stating 'the decision to withdraw had already been made'.
As the lady who had written the letter did not want to phone up, she asked me to, using her reference details. The first lady I spoke to, nervously, without the email infront of her, confirmed that Amelia would be expressing the opinions of the NHS. I did ask to speak to Amelia, but she was unavailable.
Wanting to speak to Amelia, I followed the next day with a further phone call. The lady I spoke to that time had the email infront of her and declared it to be a mistake.
Either which way the NHS were always going to deny it as true, as they have done to Lyn above.
After seeming the endo recently he said his hands were tied and he could not give me T3.
But said, he would write back to the Gp who referred me asking him to write to the CCG to see if they would provide me with the T3. ( what a carry on)
At present I am sourcing my own t3, Throid S, ( I was taking Nature Thyroid but it became too expensive sourcing it from the US so I started on the Throud S, In February and I don't know if it's coincidence, but that is when my hair started dropping out I only take 1 grain along with vitamins) My tsh levels have come down after having been out of range for years and my Dr and endo have seen first hand of this and this is why my Gp referred me. But then it seems to me like they're passing the buck to each other.
I was told I have Hashis and after going gluten and dairy free I do feel miles better.
My big problem is my weight and my hair has, and is still coming out in hand fulls..I swim a few times a wk and it is now effecting me so much so, as I don't want to swim because I'm wanting to protect my hair from falling out, its a right mess is my hair.
I'm about to get Ferritin and folate b12, Vitamin D and some other ones done privately soon. Vitamin D was 60 a year ago.
In May 2016 Ferritin was 216, range15-290.
CRP has been out for last 4 years. (Dr says that ok)
Also, Aug 2016 Alanine Transaminase was 45, range 0-40.
CRP has been out for last 4 years. (Dr says that ok)
I'm assuming that your CRP was high (because a low value is good), and I would be interested in exactly how high it is/was. I would disagree with your doctor about high CRP being okay.
If you read this, it tells you about the causes of high CRP :
When the body is suffering from an infection or inflammation a system that protects the body from iron goes into action, called the Iron Withholding Defence System. Read about it on page 8 of this document :
I have long term Hashimotos and always before going GF (18 months ago) high antibodies, but these slowly dropping since
Always above range ferritin and top of range or sometimes over range CRP
Ferritin, CRP and antibodies always ignored by all the medics.
But I know from here that low ferritin is much more typical
First test last month since adding T3 - CRP and Ferritin both dropped quite a lot. Ferritin now just within top of range. Antibodies also fallen more than normal
I have read somewhere that high ferritin is misleading and you can actually have low iron
I am due another blood test soon after T3 increase - be interested to see if they have fallen further
It demonstrates to me that adding T3, blood tests are showing it is helping and not just in the thyroid results
Thank you for replying. The CRP was 14. Range 0-10 in 2015.
I have just sent for full blood count and everything else is included in this test. I expect to have results in the next 7-10 days ( bank holiday)
And will post results when there back.
Also I might add I don't drink either, with all the excesses weight, and I became a semi Vegetarian 4 months ago.
Over the last 2 years my Drs have tried putting me on diabetes tablets.
In the beginning my BS were 5.9 and the last test was 7, although not overly high, I said no to the tablets because the Drs weren't addressing the out of range TSH levels, despite me losing my eyebrows and losing my hair.
My doctor requested my T3 be tested at my last blood test but the hospital did not do it. I had my bloods done privately through Medichecks and fortunately my T3 levels are fine but TSH are higher than hospital blood test results. All very confusing 😐
It's just another scandal in the long list of scandals connected with thyroid treatment, isn't it? We have to fight tooth and nail to get our doctors to take our concerns seriously, then an anonymous nobody in a hospital lab, who has no knowledge of our case other than what the doctor deigns to share, declines to do the test. I have had the same problem with thyroid antibody tests - the line is that I have hypothyroidism, it's being treated (unsuccessfully, BTW), so what difference would knowing the cause possibly make. As others have commented above in this thread, standards in thyroid-patient-care are insulting and misogynistic. I'm afraid it will take a lot more than a cosmetic exercise by the NHS to put the problems right.
This is a joke. Whilst I am not a conspiracy theorist I do believe there is more to this than meets the eye. T3 has been around a long time, just as NDT has been around a long time; it was the first ever tablet form of treatment of course; and to say there is little knowledge of it and its effects and to try to remove it is outrageous.
I take both T3 and NDT currently via nhs prescription but I am having to fight for this all the time and currently have been referred to an Endo who is trying to reduce my dose and no doubt will try to stop it all together and get me to take Thyroxine. DOCTORS ARE BRAINWASHED Hypothyroidism- Thyroxine- TSH and nothing else will do. They are blinded....they don't even look at their patients let alone listen and hear them. They do not think for themselves and definitely do not think outside the box.
For me thyroxine doesn't work; I feel both Hypo and Hyperthyroid on Thyroxine. My current meds are perfect and keep me functioning well. Why are we being put through this debacle when it is such a crucial drug to our wellbeing. Of course greed is the answer, we know that.
Further we are prime target for drug companies to make money....sorry even MORE money. Since Hypothyroidism affects absolutely every aspect of our body and organs then if they can get us to take a drug that doesn't work we will then take more of their drugs and then drugs to counter the side effects of the first drugs and so on. Whereas taking T3 and NDT your symptoms are relieved and no need for any drugs.
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I'm sure they will remember you and learn from you. A patient coming to talk about their poor experience of care is always more memorable than another booooooring lecturer. You are a brave person - most people would find talking to a large group of strangers rather daunting! 
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