My GP will no longer prescribe liothyronine. I am under a hospital consultant who has written to the GP but GP is adamant that they will not prescribe it because it a RED drug. Consultant won’t give me a prescription either but is going to hold a multi-disciplinary conference. I have been on liothyronine for 8 years. Can anyone advise me on what I can do? I also take thyroxine. Thank you,
Liothyronine : My GP will no longer prescribe... - Thyroid UK
Liothyronine
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hpennbet
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SlowDragonAdministrator
Your GP is wrong
Which CCG area are you in?
If your NHS endocrinologist says you have clinical need your GP should prescribe
sps.nhs.uk/wp-content/uploa...
I know, but even though consultant has contacted GP to say it must be prescribed, the GP won’t.
I am assuming that the GP has a 'budget' and would his surgery be charged for the cost, rather than the NHS?
My local chemist told me that the surgery were over budget.
I had no idea that surgeries were restricted to budgets for their patients.
It seems weird to me that some patients would be denied a prescription for their medical needs due to a 'budget'.
All patients get different prescriptions but I know that doctors have been told not to prescribe T3 due to its cost in the UK, so how is it that abroad patients can get T3 easily and also T4 without prescriptions and can buy over-the-counter.
Consultant needs to put in writing to GP that patient has on going need to be prescribed Liothyronine
With annual review back with consultant
I am In Leicester. This is very useful, thank you. I guess at the multi-disciplinary conference, my consultant will be putting a case forward for me to stay on liothyronine. What shocks me most is that the GP stopped liothyronine abruptly, with no provision for increasing the thyroxine to compensate. I was given 1 more prescription for liothyronine but that runs out in 2 weeks time.
How thoughtless are those who have no actual knowledge of being hypo themselves who we assume are knowledgeable but find out they are anything but knowledgeable. The result - patients suffer.
So true. I had my parathyroid gland removed it’ll be 2 years on 29. th August. The relief from all the symptoms was enormous and life changing!!!!!!! But also at the same time had to have a hemithyroidectomy because of an indeterminate nodule (2 needle biopsies) happened to be on same side as parathyroid. Until you are faced with these conditions you have an ongoing battle with yourself through no fault of your own doctors whom have not got these conditions have no idea what it does to your daily life.Hormones go up and down so do the symptoms.Dishing out medication they think that’s solved your problem it’s ongoing. Now sub clinical Hypothyroid. Similar symptoms to Hyperparathyroidism. Brought to head last November pins and needles hands and arms dead especially at night time........ Not helped by being on an anti cancer drug which also gives you symptoms of Pins & needles !!!!!!!!!Gp has know idea what it’s like.
I'm sorry you have had additional problems to deal with and, hopefully, you'll be able to recover your health with the help of some members and doctors who will listen to you and know how to do their best for you to feel well again.
91 prescriptions in last year
openprescribing.net/analyse...
Guides on Leicester CCG website
267lv2ve190med3l1mgc3ys8-wp...
Patients currently prescribed liothyronine, or levothyroxine and liothyronine combination therapy, for hypothyroidism should be reviewed to initiate switching to levothyroxine monotherapy where clinically appropriate. Arrangements should be made for switching to be undertaken by a consultant NHS endocrinologist, or by a General Practitioner with consultant NHS endocrinologist support. Patients who are currently obtaining supplies via private prescription or self-funding should not be offered NHS prescribing unless they meet the criteria in this guidance.
The consultant endocrinologist must specifically define the reason if any patient currently taking liothyronine should not undergo a trial titration to levothyroxine monotherapy, and this must be communicated to the General Practitioner.
Guidelines are quite clear here
leicestershire.formulary.co...
To make the above statement just goes to show how unknowledgeable - even though they are 'supposed to be qualified' - are completely ignorant of how hypothyroid patients can suffer if levo doesn't improve their health.
We approach the 'specialists' with confidence that they will restore our health but we've found that this can be an exception when levothyroxine doesn't restore it and we suffer badly.
The two statements stand out:-
1. Patients who are currently obtaining supplies via private prescription or self-funding should not be offered NHS prescribing unless they meet the criteria in this guidance.
These patients have been forced to source elsewhere as levo didn't improve their health one iota and may well have felt far more unwell on levo than before they were diagnosed. I can vouch for this having diagnosed myself as no doctor or specialist I consulted - some paid for - had any CLUE of what was wrong with me or what suffering people go through due to their 'guidelines'. Guidelines are supposed to restore health - not destory the patients altogether. I even underwent an operation to remove a 'web' but I had no such thing. What was on the barium swallow then? I asked and got no reply. I assume it was a swollen thyroid gland after I diagnosed myself.
Do they care that many are unable to work due to hypo? NO! Do they care that relationships might be damaged. NO!
2. I am also aware of a hypothyroid patient who took her own life as she could no longer cope with her unending symptoms.
How many are given anti-depressants instead of ensuring FT3 is optimal and FT4. Or painkillers or any other prescription to 'keep patient from complaining'.
Are they so completely 'out of it' that they have no idea at all how the patient feels/copes on thyroid hormones that make the struggle to recover their health torture.
We and their family members have been paying towards the NHS from the day they started earning. We contribute to the payments of doctors. We don't complain about doctors unable to diagnose clearly hypo patients as they did before blood tests were introduced along with levothyroxine. (I have personal experience of this).
2. The consultant endocrinologist must specifically define the reason if any patient currently taking liothyronine should not undergo a trial titration to levothyroxine monotherapy, and this must be communicated to the General Practitioner.
3. God help us and protect us from these barbaric statements and ignorant doctors.
As if anyone who is hypo and feeling much more unwell on levo than before being diagnosed do not need compassion and assistance with the 'correct' thyroid hormone replacement that suits patients, i.e. NDT, T3/T4 or T4 alone (if patients' symptoms resolve with T4 only.
I am in Leicester and mine was reinstated. Also contact our MP Jon ashworth he knows all about t3 being stopped due to cost and he was very helpful to me.
I bought it online no prescription!
If we live in the UK, we shouldn't be forced to source from elsewhere. We could also be given thyroid hormones that aren't authentic.
How do you do this?
I would if it wasn’t expensive
If neither your gp or endo will fund your t3 you must get individual funding. I understand that LRI prescribe t3 who is your consultant? is it Dr Levy, Dr Bhake or Mcanally? at LRI if you wait for the multi discipline call you could be waiting ages and your GP can still refuse to fund it from his budget. Contact Jon Ashworth and LCCG if you want the ccg contact details and jons email pm me x meanwhile ask your consultant for a private prescription to cover you for 6 months until it has been sorted. It took 10 months for my t3 to be reinstated and i had private prescription till then, i took it to france and it cost me 3 euros for a packet of 30x25mcg i got 20 packets to keep me going. I now always keep at least 12-18 months stash in case i ever have a prescription or supply problem, i can not function without t3. x
My consultant is Dr McNally. I saw him as a private patient initially and then I transferred to his NHS list. I was very ill when I paid to go privately to see him. Liothyronine has been a life saver to me. Your advice is very useful, thank you very much.
How can the NHS not source T3s that are cheaper elsewhere in the world and instead are ripped off by the (3 UK suppliers I believe) and they are all similar in price.
The fact that the 'experts' removed T3 from being prescribed was the perfect excuse, as more patients were requesting a T3/T4 combination or T3 alone - if they were very unwell on levo.
When I worked in a hospital pharmacy we were sent a list of drugs and the pharmaceutical firms that had got the contract for supply of them. I would have loved to have known how some pharmaceutical firms got these contracts because some of the drugs were substandard according to some of the pharmacists who had to dispense them. This is nearly 20 years ago but I don't think much has changed since then.
Where are the GPs when you need them? They must know full well what's going on yet many of them appear perfectly OK with depriving patients of T3 on cost grounds in the full knowledge that those patients will be left with the choice of deteriorating significantly healthwise or seeking their medication via the internet. It's about time they got off their backsides and started looking after the best interests of the patients, rather than turning a blind eye to the scam merchants. This overcharging on T3 has now been going on for several years and nothing is being done about it, other than taking action prejudicial to patients.
The fact that NDT (natural dessicated thyroid hormones) the first and only replacement of thyroid hormones that saved lives from 1892 up until they was also withdrawn.
This was yet another thyroid hormone replacement removed by the 'authorities' but I think they were just waiting for an excuse. To do so, they had to state 'misinformation'.
For professionals who do not have a dysfunctional thyroid gland who make decisions that backfire on patients who were well upon it is more than disgraceful. No blood tests then - only the patients' clinical symptoms and the patient had a trial of NDT.
NDTs safety from 1892 onwards shows clearly that it was a lifesaver until Big Pharma saw a way to improve their coffers (i.e. levothyroxine - Dr John Lowe stated that doctors etc in USA were paid by Big Pharma to prescribe levo).
At present, I believe, the only prescription for hypo in the UK is levothyroxine (which makes me so very, very unwell and which also cost more £££s to the NHS due to the number of investigations/appointments I had).
Thankfully, through my own research and Thyroiduk's advice (before this forum) slowly helped my recovery.
Those members who are not members of Thyroiduk could increase membership numbers
thyroiduk.org/help-support/...
Doctors who were trained to know and diagnose by clinical symptoms alone were then pursued by the authorities towards the ends of their careers, i.e. Dr Skinner and Dr Peatfield for doing as they were taught as students but even more important saved the lives of their patients.
Dr Skinner for restoring people's health was pursued by the 'authorities' a number of times and had to appear before the GMC, so the stress/strain his patients believe may have caused his early demise. People travelled from all over the UK for his advice (I was one) and he was such a 'down-to-earth doctor' and his staff stated that everyday was filled with laughter and joy. Dr Peatfield was also pursued and caused him to resign his licence but he still was able to 'advise' patients on how to restore their good health. Again people travelled from all over the UK for an appointment.
dailyrecord.co.uk/news/real...
The above link is one of the published successes. There's more people who we're unaware of may well have found they couldn't carry on.
I’ve been in touch with the thyroid trust and they say it’s a postcode lottery, since the medical list has been updated this year and certain areas can be prescribed. Unfortunately I’m in Lancashire and not on the list yet. My doctors have refused me any other medication apart from levo. Which I cannot take. So unmediated since last August and they not even rung me. If I had the money I could go private but unfortunately I’m not in that position
Yes, I think you a right, it is a postcode lottery. How are you managing without any medication at all?
If you're hypo you must have thyroid hormone replacements. Levo also made me far more unwell than before I diagnosed myself.
I would ask for an appointment with your local MP to see if he/she can help you. Thyroiduk did consult with The Lords when the new prices caused the removal of T3 - seemed to make many endocrinologists/doctors happy (it seems to me) to tell patients they'd would not get T3. The stress/strain caused to those who relied upon T3 for good health cannot be experienced by the 'experts' who seemed to be waiting for an excuse as more and more patients were requesting T3.
I doubt any of the experts are familiar with myxedema coma which we, the deserving patients, need to avoid through having the proper thyroid hormones that restores our health. If people have a reaction to certain foods they would avoid them so why cannot the medical professionals realise that some of us cannot improve on levo at all.
My TSH results last August was 32. I have other health issues before this. So trying to sort things on my own is a struggle.
It certainly is a struggle if we're "going it alone". I hope your doctor is good and taking care of you. If you're on this forum you aren't alone as the majority have had to go through similar experiences.
I also hope your TSH is reducing and that your doctor knows how best to treat you.
Are you aware of the preparation for when you are having a blood test for thyroid hormones? If not, this is the advice:-
All blood tests have to be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take afterwards.
Ask for B12, Vit D, iron, ferritin and folate - everything has to be optimal.
Always get a print-out of your results, with the ranges, for your own records and post if you have a query.
No. That’s the point. He’s not contacted me since last August! I even asked for help during the lockdown but because my health condition wasn’t on the rubbish government list. They refused. My vitamins levels were fine. As I’ve always took them as I have difficulty eating food.
I’ve just increased thyroid vitamins.
Can’t afford anything private or monthly out going’s as I pay bedroom tax and council tax and limited to my funds.
So basically stuck with this with no help.
What will be. Will be
Have you tried Metavive?
No. But can’t afford to buy it monthly etc.
I thought it was quite cheap to buy. Just to add Michael Gove's wife Sara Vine takes NDT which I think is very unfair because a lot of people have to buy their own. I did tweet to her about this a while ago but she ignored me.
Metavive - a quick check on one source £25.96 for 90 capsules of 80 milligrams.
Not inexpensive if you are financially challenged. Almost one third of the average monthly combined gas and electricity bill.
I was comparing it to the price of Thyroid S and I was only trying to be helpful.
Thanks Lora. Didn’t mean to sound harsh 😊 it’s a struggle for all of us,
It’s frustrating that I can’t get support or the medication we need,
I give up researching stuff
I agree, I have given up trying to get help from the NHS so I do my own blood tests and if necessary buy my own drugs on line. I am fortunate because I can afford to do this but since the lockdown I have been impacted financially just like a lot of us.
I’m left with nothing after paying my bills and debts. So might be only that price. But paying my rent and council tax comes first unfortunately,
Or I’ll get evicted
You will not get evicted because the government has extended it until 20th September. I was about to evict someone who hasn't paid me for months before the corona and has no intention of ever paying me and now I can't. Just to add I have never evicted anyone because I used to live in a council house myself.
That is what I was trying to say - without meaning to assume anything about your circumstances.
Thanks for that. But if I don’t pay it now. They can’t evict me now. But then it’s catching up on rent afterwards in the future, I’m basically left with nothing once I’ve paid rent, council tax etc.
Will just hope it changes in the future, so I’ll suffer in silence 😢😊
What about housing benefit? Can you apply for that?
Yes. But I’ve lived in my two bed home for 28 years and now my daughter has moved out, I have to pay the bedroom tax plus council tax, even with discounts, I have to pay £45 a month before any other bills.
I’m only on basic ESA for my other health issues and don’t claim anything else, I have a credit card I’m trying to pay off. The debt is only from going to private doctors years ago about my other health issues, cause by a surgeon who operated on me and left me butchered.
Then UAT started. So basically stuck in my position.
Appreciate you’re chat etc. Constant struggle batters my head.
But thanks 😊
I think the bedroom tax is stupid. I had an extension to my house several years ago but I still pay the same council tax which will only change for the next owner if I sell my home.
Hi. Sorry to bother you. But have you got the source about Goves wife taking NDT please, it’s something I’m researching about not getting the correct drugs and I need the evidence or source of the information if you can please 😊
Widely available online. 
For example:
dailymail.co.uk/femail/arti...
Search for "sarah vine" armour thyroid
Hi. Did you have any side effects from Metavive plz. I’ve just ordered some but scared to take them. 😊
SlowDragonAdministrator
Prescription rates by CCG area for England
You can search by individual CCG area too
openprescribing.net/analyse...
Thank you very much for the information. It is very useful.
SlowDragonAdministrator
GP should not alter T3 prescription - should refer to endocrinologist
pulsetoday.co.uk/news/clini...
A red drug isa drug that is initiated by consultant (And ongoing prescription via GP)
A black drug can not be prescribed at all
The consultant won’t prescribe it to me now and says he is going to have a multi-disciplinary conference. I don’t understand why GP won’t prescribe it if consultant says he should as shown in the pulse article. Is there anything I can do? Does ‘Red’ just mean that it is too expensive and not that it is dangerous? GP said they are not allowed to prescribe it anymore because it is dangerous but it sounds to me as if it is because they just want to reduce their monthly budget.
You could write and complain to the CCG
Hello hpennbet
It is a financial constraint and has nothing to do with being dangerous to health.
You have been on Liothyronine for some years, think back to how you were before Liothyronine, and look at where you are now, has it damaged your health or are you better for being on this vital thyroid hormone ?
The situation is so wrong in so many ways, with some doctor feeling compromised and making stupid excuses to patients thereby loosing any respect they may once have thought they held.
I was very unwell before starting combination therapy. I am now able to function and have a much better quality of life.
Which CCG area ....I can look up their individual policy....obviously it’s money..
Write to GP include Copy of the guidelines.
Removing T3 against endocrinologist advice is directly against guidelines
Highlight relevant sections
leicestershire.formulary.co...
And pages 1-3 of
leicestershire.formulary.co...
Obviously it’s all about money, nothing to do with health
Stand your ground
Write to CCG too if necessary...and your MP
Many thanks for the information.
It’s purely financial.....
NHS could and should drive price down
Legislation is in place to do so ,...but no action taken
T3 in rest of world cheap as chips
gov.uk/cma-cases/pharmaceut...
No it's not cheap but it's not like in the UK.
T3 (Cytomel) used to cost the same as Synthroid
until the manufacturer got in trouble with a heart drug
and had to pay out damages. So they increased the
price of T3 to fund their legal problems.
What I don't understand is over here in Canada if a doctor
wants to change a prescription drug the patient must agree.
If there is not evidence of harm and in fact evidence of
benefit, a patient only needs to say 'I forbid you from
changing my prescription'... or 'denying me a prescription'.
Without evidence the prescribing physician cannot
unilaterally change therapeutic meds.
Do you not have anything like that in the UK?
Can't she just tell her GP "I forbid you to deny me
this medication which I have been taking for seven
years and has given me my life back."
If the cost is coming out of the practice budget, well
too damn bad. Are people supposed to crawl along
on the ground suicidal because somebody decides
the drug doesn't fit the budget?
Yes...budget decisions are taken all the time
NICE decides if a treatment is giving “value for money”
The implications are ...if you don’t like it ....go private
Some endocrinologists will prescribe if you see them privately, but can’t prescribe if seen on NHS
Desperate people can be drawn to taking their own life. I know of one who wrote a statement for the coroner to read about the reason she could go on no longer.
I assume she wanted some publicity about the state of affairs in the UK but I doubt it would be published. Probably it was thought 'while the balance of mind was disturbed' and ignored the plea for 'change' in prescribing options.
It is horrible to think how desperate you must feel to do this. I myself have felt suicidal after sitting infront my GP begging for treatment which he refused because it was against NHS guidelines. I then went home and lay in bed for several days which turned into months, not having the energy to get showered and dressed. My own family would tell me to pull myself together because I didn't look that ill except for my balding head and nails. I couldn't even be bothered to ask for help from my thyroid support site because I didn't have the energy to even type. I do wonder if there are a lot of untreated people reading this site now because I just read it for a year before I posted. In years to come I think doctors will look back and see how many patients they let down because of these guidelines.
I fully agree and the worst fact is that doctors and endocrinologists seem to fail to understand what the function of thyroid hormones actually do within our body. The seem more concerned about the whereabouts of the TSH results- which is from the pituitary gland - and rarely test FT4 and FT3.
I had never heard of hypo before - and if it was mentioned it all went over my head. I would never have dreamt that there were 'help' sites on the internet as I was unaware of what was troubling me and relied upon doctors and paid others - none of whom even came near to diagnosing what was failing in my body.
I think our experiences would be common amongst many people whereas, in the past, doctors seemed to be knowledgeable about clinical symptoms and gave patients a trial of NDT. If it helped they were hypo and continued on NDT.
I didn't know what it was either and it was actually someone on hair loss site who pointed out my TSH was suppressed so I then joined Elaine Moore's site to ask her advice. When my levels were low she told me that 20% of people with Graves' go hypothyroid and need Levothyroxine so I then went to see the wonderful Dr Skinner who persuaded my GP to give me a prescription for it. If only there were more doctors like him now.
My quality of life was very poor before I started liothyronine. It has been a life saver for me. At my worst, my resting heart beat was 49 beats a minute and I could sleep for 24 hours and still be tired. I would fall asleep on the sofa on a Friday night when I got home from work and be too tired to get up and go to bed. I would still be on the sofa on Monday morning when I had to go to work, having gone the whole weekend without eating or drinking or going to the toilet. I felt has if I was dying.
My average resting heart been is normally about 58 beats a minute. I am much better than I was, I can function and I can enjoy my life again. I am dreading relapsing to my pre liothyronine state.
Hi hpennbet
I'm on T3 after several months of being on T4 and feeling really ill my gp/endo insisted I keep on it, saying their is no such thing as having a bad reaction to T4.... upshot I'm lactose intolerant so the ingredients were making me ill I also have colitis. After going through hell having my thyroid removed I thought gp/endo would do everything they could to get me well again.... WRONG!!!! They fiddled about with the T4 making me worse as you point out money is a big factor in GPS surgeries and when my gp/endo found out I was lactose intolerant plus my blood work was awful they very reluctantly tried me on t3, I'm by no means out of the woods yet and now my parathyroids have gone overactive 😠 would a doctor take a diabetes patient off their medication, would he stop a person's heart medication so easily.... NO...... but god forbid if you have a thyroid problem I feel these thyroid conditions are not taken seriously by the gps/endow ect..do they really know how awful thyroid symptoms can be... Well no they don't...... What kind of thyroid condition have you been diagnosed with hpennbet? And how is your blood work?
Kind regards
Karen
Hi there. I’m so sorry you’re having to face this. It’s just so wrong.
There’s a group on Facebook called Improve Thyroid Treatment campaign that seems to have some letters/documents/other forms of practical support for people in your position. I suspect you are going to have to make an assertive argument about why/how losing this treatment will significantly impact your health and quality of life. (And, if they really are not going to prescribe T3, how you will need an adjustment to your levothyroxine prescription).
Cynically, and since T3 is now not routinely prescribed because of funding issues, I can’t help but wonder about the amount of money the NHS must waste in case conferences about whether to prescribe this or that drug rather than actually practicing medicine.
Let us know how you get on.
They have a cheek to remove thyroid glands without preparing the patient of how they may feel afterwards and also for them to insist that levo alone is to be prescribed. My heart drops.i
The NHS is going to use up more money with patients going to the doctors more often. Asking to be referred to consultants (the only ones who can prescribe T3) and who may not prescribe it, so patients forced to source their own which is not why NHS was originally was introduced.
Relationships may fail : jobs lost - too ill to continue.
For our lives to be dictated to by a TSH result alone whilst ignoring clinical symptoms I don't think is a good idea being mindful that few, if any, doctors know any clinical symptoms at all.
Why can some other countries provide T3 at a fraction of the cost that the NHS is being charged? Surely sourcing from outside the UK is not impossible.
Why hasn't the Associations got to grip with the costs but use it as an excuse not to prescribe it!!!
How many people who cannot improve their health on levo are given 'extras' i.e. antidepressants or pain relief or anything other than decent thyroid hormone replacements?
Its so upsetting and frustrating reading all the comments here.
It needs to be exposed on national tv, have an investigation on why T3 is so expensive in this country and why we are being denied something that so many people desparently need. It is criminal. I never knew about T3 until joining this site, i cant believe its going on.
The 'mother' organisation is Thyroiduk.org.uk and at the forefront is Lyn Mynott.
All the work is carried out in a shed in her garden. She also does lots of work to change the attitudes of doctors/endocrinologist and has met with 'organisations' i.e. British Thyroid Association etc.
She also met - with other oganisations - The Lords to inform them that withdrawals of T3 'without notice' caused immense worry to patients who were well upon it.
The more members TUK has, the stronger our voices.
There's also two people who assist her as well.
We get quarterly, very helpful and informative, magazines telling us of the latest situation.
Another very upsetting reason is that the very original 'replacement' since 1892 was introduced for hypo patients who previously died a horrible death through hypo.
They recovered their health. NDT (natural dessicated thyroid hormones) saved lives from then on and does still today.
It is made with animals' thyroid glands so contain all of the hormones a health thyroid gland would have.
Unfortunately, the 'Association' withdrew NDT without notice and we can feel the worry and upset caused to patients and the 'Decision' was also followed with False Statements.
One of TUK's Advisers, Scientist, Researcher, expert in Thyroid Hormone Resistance, wrote every year for three years for a response. They never did and Dr Lowe died through an accident. What kind of 'medical people' are those who decided to withdraw it.
drlowe.com/thyroidscience/C...
Being the 'honourable gentlemen' they never did respond. As the saying goes 'ignorance is bliss' but not for patients left stranded and anxious and deprived of a replacement that had restored their health.
Should we be forced to search the internet for replaceable thyroid hormones? NO! definitely not but forced to if health is to be restored.
To be brutally honest - this is a cost issue. The NHS is the only large procurer that I know of that drives costs up, yes up, during the procurement process instead of down. Levothyroxine costs the NHS pennies bnf.nice.org.uk/medicinal-f...
According to The Lance, thelancet.com/journals/land... "In 2016, the 28-day National Health Service (NHS) cost of liothyronine in the UK increased dramatically from about £4·50 to £258·19,"
It's time patients started (en masse) telling their GPs to order it in for them. It's only slightly more expensive than levo.
You need to contact your local ccg phone and speak to them, get a name and their email. Email your consultant letter, you have to apply for individual funding. Same happened to me, it took 10 months to reinstate. Your gp just doesn't want it coming out of his budget but knows he can't refuse due to cost, so he is wrongly saying it is a red drug. X
I would reach out to my MP to see if they will help. I had a 2.5 year battle with NHS Tayside as they wouldn't allow endo's to prescribe T3 for new patients. I'm in Scotland and my MSP'S office was invaluable in helping me get T3.
SlowDragonAdministrator
Your GP needs to understand the difference between Red and Black
british-thyroid-association...
Media coverage
thyroidtrust.org/media-cove...
mjauk.org/wp-content/upload...
dailymail.co.uk/news/articl...
medscape.com/viewarticle/90...
MP’s who have spoken on liothyronine
theyworkforyou.com/search/?...
I think they are just trying to scare me by saying it is a red drug and they are not allowed to prescribe it because it is dangerous when the real reason is that the surgery is over budget and needs to cut costs.
You can do an internet search about RED drug listing. There is no doubt that this is due to cost but as mainstream pharmaceutical companies do not appear to be manufacturing this in the UK, the cost will be high. Bit of a catch 22 really if NICE don't recommend it. My chemist says she just can't get it from their suppliers. Not much help to you hpennbet but I wondered how things are progressing to getting this into mainstream, we seem to have taken steps backwards instead of forwards. There are usually pharmaceutical departments in hospitals, can they supply it if prescribed by their consultant?
I knew that the day would come when my GP would want to stop prescribing liothyronine. What shocks me is that the GP says it is being withdrawn because it is dangerous when in fact it is because it is too expensive. The withdrawal was been abrupt with a phone call from admin at the surgery with no thought given to the fact that I would be under medicated immediately with no provision to increase the thyroxine to compensate.
helvellaAdministratorThyroid UK
The statement that it is a "RED drug" is wholly unacceptable.
You need access to the criteria that make that so - not some patronising "traffic light" term.
There have been any number of coloured lists across the NHS with a variety of meanings. Sometimes the term is only used slightly differently: sometimes it means something else entirely.
I mean, we as pedestrians, cyclists and drivers know the meaning of a red traffic light because we have the Highway Code to refer to and it is drummed into us from the youngest age.
But this RED list is entirely arbitrary and was chosen expressly to make everyone assume they know what it means - don't prescribe it. But the actual words might be at least subtly different. (And there might well be multiple red lists - which one are they referring to? There certainly are multiple black lists.)
Slow Dragon provides good advice.
writing a letter to the surgery explaining why you need T3 is a very good thing to do. I composed a model letter for someone else and i copy it here for you. Please copy and paste it into a Word document and amend it to suit your own circumstances - I don't know them!
For instance, there may not be a blanket ban at your CCG but there may be a restriction that is so tight it amounts to a blanket ban.
Your Address line 1
Your Address line 2
Your Address line 3
Your Post Code
Dr. name here
Surgery name
Address line 1
Address line 2
Address line 3
Dr.s Post Code
Dear Doctor (insert Dr’s name here)
Refusal to prescribe liothyronine (T3)
British Thyroid Association Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee 2015
PrescQIPP Bulletin 121 Recommendations 2016
BTA Prescription of Liothyronine in Primary Care 2017
NHS England Items which should not routinely be prescribed in primary care: Guidance for CCGs 2017
Health Act 2009
RMOC guidance: Prescribing of Liothyronine
I write following my consultation with you on (insert date here ??/??/????) during which you informed me that you could no longer prescribe T3. You told me that the reason was the Clinical Commissioning Group/Health Trust had banned prescription of T3. I believe that this decision is irrational and unlawful and therefore I request that you continue my prescription of T3. I have a clinical need, guidance on prescribing liothyronine allows for a clinical need and several judicial reviews have declared blanket bans to be unlawful.
I have a clinical need for liothyronine.
I have seen (insert doctor’s/Endocrinologist’s name here) at (insert surgery’s/hospital’s name here) who has recognised my need for T3 and has advised that I am prescribed T3 because my health did not improve on T4 alone.
(You may include additional information about how you did not thrive on T4 mono monotherapy)
Since taking T3, my signs and symptoms have resolved or partially resolved. (amend the points below as necessary)
•My “brain fog” has cleared
•My face is less puffy
•I feel less fatigued
•I feel less irritable
•I am able to exercise more regularly
•My blood pressure has gone down
•My pulse rate has increased
•I am able to work better
•My relationships with my friends and family have improved
(amend remove or add any other health improvements you have since taking T3).
I have demonstrated that I have a clinical need for T3 that was not met by T4 monotherapy. My health will deteriorate if I do not take T3.
Banning liothyronine is irrational
I have attached the documents detailed above to show that they accept that there is a cohort of patients who do not thrive on thyroxine alone. All of them allow for an exception where the clinical need is clear.
In summary;
•The BTA is a group of expert Endocrinologists who recognise the need for some patients to take liothyronine in their Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee 2015. I attach a copy with relevant passages highlighted on pages 6 and 10 .
•PrescQipp is a group of pharmacists tasked with reducing the cost of medicines to the NHS who have also recommended that some patients will need liothyronine in their Bulletin 121. I attach a copy with relevant passages highlighted on pages 1 and 4.
•The BTA became aware that their guidance was used to promote a ban on liothyronine and issued direct guidance asserting that some patients clinically need liothyronine I attach a copy with relevant passages highlighted on pages 1 and 2.
• NHS England recommends that CCGs must make provisions for the prescription of liothyronine. I attach a copy with the relevant passages highlighted on page 8, 19 and 20.
•The RMOC guidance also allows for the prescription of Liothyronine where is it is clinically necessary
The documents clearly show that despite a drive to reduce the numbers of prescriptions of liothyronine, some patients will still have a need for it to be prescribed to them. To completely ban liothyronine is clearly irrational in the face of those recognised exceptions in the guidance and recommendations above and particularly when a blanket ban is contrary to the advice from NHS England.
Blanket bans are unlawful
Clinical Commissioning Groups have a legal duty to have regard to the NHS Constitution. The 2019 Handbook to the NHS Constitution says:
If a CCG, a local authority or NHS England has decided that a treatment will not normally be funded, it needs to be able to consider whether to fund that treatment for an individual patient on an exceptional basis…In addition, decisions by the courts have made it clear that, although an NHS commissioner …can have a policy not to fund a particular treatment (unless recommended in a NICE technology appraisal recommendation or highly specialised technology recommendation), it cannot have a blanket policy; i.e. it must consider exceptional individual cases where funding should be provided.
By instituting a blanket ban and not considering exceptional individual cases, (insert your CCG here) has not had regard to the NHS Constitution and wold have realised that a blanket ban is unlawful.
The courts are clear that blanket ban of drugs are unlawful. The courts have said that even if a drug is to be restricted on the NHS provisions must be made for clinical exceptions.
The cases stated are:
•R (Elizabeth Rose) v Thanet Clinical Commissioning Group (2014). CCGs should not deviate from guidance just because they don’t like it.
•Regina v Secretary of State for Health ex parte Pfizer: 51 BLMR 189 1999 Guidance should not take the place of a doctor’s (and now patients following Montgomery v Lanarkshire Health Board 2015 and Consent: doctors and patients making decisions together) judgement
•R v Cambridge Health Authority, ex p B [1995] 2 All ER 129, [1995] 1 WLR 898 Authorities must take ALL factors into account when limiting access to treatment. The decision should not be "so absurd or outrageous in their defiance of logic or morality that no reasonable person addressing the question would have come to the same conclusion".
•R. v North West Lancashire Health Authority, ex parte A, D and G [1999] All E.R. (D) 911 Authorities must not establish a blanket ban and must take into account patients individual circumstances
•R v Swindon NHS Primary Care Trust, Secretary of State for Health, ex parte Rogers [2006] EWCA. Civ 392 The concept of exceptionality cannot be too narrow to the extent that no case would be exceptional.
•R. v Barking & Dagenham NHS PCT, ex parte Otley [2007] EWHC 1927 and R. v West Sussex Primary Care Trust, ex parte Ross [2008] EWHC B15, Health Authorities must include divergent expert opinions when considering scientific evidence
•R. v Salford Primary Care Trust, ex parte Murphy [2008] EWHC 1908, Authorities must evaluate exceptionality holistically
Conclusion
I have demonstrated that I have a clinical need for liothyronine, that banning liothyronine is contrary to guidance and recommendations and that a blanket ban is unlawful. I respectfully request that you restart/initiate my treatment. I am afraid to say that if you do not, I will have no alternative but to make a formal complaint regarding your decision.
Yours faithfully
(Sign here)
(Type your name here)
This is wonderfully worded. If you don't mind I'm going to save this for the inevitable day my GP decides I can no longer have T3 prescribed. Thank you.
By all means use it. It's an open document for all who need it.
That’s great, thank you very much for your advice.
I'm in a different CCG and my GP initially refused to prescribe liothyronine because he didn't know how to monitor me. (I believe the real reason was cost but he couldn't say that.) My endo said he would see me at least once a year to take the responsibility off the GP.
Your GP suddenly withdrawing the prescription is dangerous and negligent.
Good luck. I hope you manage to get it reinstated soon.
So much good advice on here. I really feel for you having had half hearted attempts to stop my T3 myself, but luckily it has never got as far as being withdrawn - yet.
It really is a scandal and I wish you all the best getting this resolved.
It is a scandal!
Media coverage
thyroidtrust.org/media-cove...
Original exposé...in 2016....still no action
mjauk.org/wp-content/upload...
dailymail.co.uk/news/articl...
@hpennbet Please would you write your story for The Thyroid Trust?
On behalf of the collaboration on thyroid patient groups fighting for access to T3 across the country, they are collating the stories of people who have T3 refused or removed.
Your story can remain anonymous if you wish.
This will really help the national campaign. Thank you in advance!
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