T3 being withdraw : I’ve just returned from... - Thyroid UK

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T3 being withdraw

ScattyNat
ScattyNat

I’ve just returned from holiday to a letter from my GP supported by the CCG stating they are stopping my T3 medication as they aren’t willing to pay £225 for 20 tablets compared to the cheaper Levothyroxine which I’m also on. I’ve dreaded this & my old GP never would have allowed it but since he left his partner is cutting back everything. Anyone know my legal position, I’ve been on a T3/T4 combo since 2006, I am reviewed yearly by an Endocrinology Consultant who saw me in March and who stated my T4 was to be slightly reduced due to low TSH but I was to remain on my current T3 dose. So can they just stop it? I’m so angry and upset at the moment as I know without T3 I won’t be able to function in my full time job. My 23&Me also shows DIO2 defects, I just don’t know where to begin fighting this.

57 Replies
oldestnewest

I sympathise- the same thing happened to me and it’s terrifying to think you might be made unwell again. My CCG banned T3 on the grounds of cost. I didn’t want to risk being referred to an endo again, in case they decided after 16 years I could no longer have T3. I know some people are fighting their CCGs. I asked my GP for a private prescription- he says it’s the kind you get for things you have to pay, for like travel vaccines. It costs the NHS nothing. You have to send the paper prescription to Germany. I’ve been successfully buying Thybon Henning. 100x20mcg tablets is around 30EUR (UK cost £922.) You can also buy packs of 50 tablets for around 20EUR. I don’t know what will happen after Brexit, though. PM me if you need any more details about how to use the sites at the bottom of this webpage:

thyroiduk.org/tuk/treatment...

ScattyNat
ScattyNat in reply to Quokka

Many thanks. I may be in touch. First port of call I’ve emailed my GP’s practice manager mainly because I’m part of the PPG Patient Participation Group so I have a good relationship with them normally. He said that some sort of practice optimisation group send out these letters so he’s going to look into it for me. If I don’t get anywhere there, I’ll go to my Endo and see where that takes me. It is appalling that UK pharmaceutical companies are holding the NHS hostage when clearly they can make it cheaper, think I read it’s gone up 6000% in 10 years. I don’t see why they charge extortionate prices when all the NHS does is refuse to pay & then we either get ill or have to source alternatives from abroad either way they lose money.

Get in touch with your endo Secretary and ask for a letter send to your GP stating that they aren't to stop prescribing t3.

CCGs are bunch of accountants and they're main goal is to cut costs at NHS and not support health services. That is the reason they are heavily pressuring GPs to stop.prescribing t3.

However they cannot stop it if endocrinologist say the medication.IS TO BE PRESCRIBED.

Once you have a letter you can use NHS and CCG own procedures and directives to fight off CCG leaches.

Good luck. Don't let them get away with it.

Thanks for this. I’m going to give the Practice Manager some time to resolve but I’ve gotten a hold of my Endo Consultants email address so I’ll also send him a brief outline as to what is going on. If I remember rightly he previously asked if my GP was okay prescribing & they were then. So I think he’s familiar with these problems and might be able to assist. It definitely seems like the cost has gone up even higher in just a few months. As about 4-5 months ago there was a hold up and you couldn’t get T3 due to manufacturing issues. I remember the pharmacist’s sourcing other suppliers and they were shocked that the cost was over £900 for 100 tablets. And now the GP/CCG is stating £225 for 20 tablets which would make it £1125 for 100 tablets. It is extortionate!

Believe me all.endocrinologists are fully aware about t3 situation and the cost.

My latest visit, dedicated only to get t back t3, with the new endo last month - was me asking endo to confirm in writing to the GP I'm to be prescribed t3 and endo saying he'll do that but GP may be obstructive!?. So, yes they all.know what's going on and how difficult it is.

But as NHS guideline state - if specialist decides you need it, you then have the ammo to get it.

You are lucky to have been given T3 for so long, mine was removed on cost grounds over a year ago. We have all had to become very proactive in our finding other means of buying T3 from abroad. There will be plenty of advice on this forum for you

Thanks & yes I’m getting great advice. As I said I am fortunate to have been on it so long & if my original GP who was by far the best GP in the world I know I wouldn’t be in this mess but the stress of UK healthcare caused him to move over to Jersey once his wife had a baby! I don’t begrudge him. But he was a great doctor who supported me through multiple chronic health diagnoses. He was one of those doctors who was confident enough to say ‘I don’t know’ but he would read up and research. But I won’t let this go & I’m hearing from many that I’ve got good evidence to fight it being that I’ve been on T3 so long, it’s Endo Consultant prescribed & that consultant performs annual checks to monitor.

Good luck to you. I was on T3 for over 20 years, but they still tried to tell me that I did not need it. I do not have the fight in me to argue with them all the while, and even though a private consultant has confirmed that I should be on T3, it is easier and less confrontational to source it very cheaply from abroad. And one day when the cost is reduced, maybe it will be available for those of us who become very unwell when it is withdrawn.

SkyBelle
SkyBelle in reply to ScattyNat

Suggest you raise your concerns with the General Medical Council - I found these people full of enlightening information

ScattyNat
ScattyNat in reply to SkyBelle

Thanks I’ll add it to the list of people everyone has suggested to contact.

SkyBelle
SkyBelle in reply to SkyBelle

Thks Scattynet, I now have a Dr who is on my side & most importantly, I have a great Chemist and my Wochardt Brand continues.

Bunnyjean
Bunnyjean in reply to ScattyNat

It would be interesting to see if this practice of refusing T3 actually cost the NHS the same. People are being referred to all sorts of specialists, people find it hard to work full time, etc.etc. This is making good people ill and causing distress to their families.

Shame on the NHS.

ScattyNat
ScattyNat in reply to Bunnyjean

I agree and that’s my fear. I have a myriad of chronic conditions including Fibromyalgia, CFS, POTS, DSPS amongst others but have always worked full time (except a 6 month sick leave from NHS when CFS initially hit) and my thyroid has always been the one thing I had controlled and didn’t need to worry about. I remember how I felt before being put on the T3/T4 combo and I know this could cause me to stop working and I’d lose my place etc without being able to work. I’ve explained this to my practice I will await their response and then make my next plan of action.

Bunnyjean
Bunnyjean in reply to ScattyNat

You could always buy your own NDT or T3 from abroad. It's a pain but well worth it to stay well, why should you have to beg for what should be rightfully yours. How about a visit to your MP. Explain your situation and tell him that in France T3 cynomel can be purchased for just over three euros per box of thirty pill.

it is made in France by Sanofi. Wait for his reply?

ScattyNat
ScattyNat in reply to Bunnyjean

Thanks, speaking to everyone on here I’m seeing I’ve got several options open to me. I’ll see what my GP surgery comes back with first as I’ve had a good relationship with them before now. If no joy there, I’ll try my consultant, I really want private prescriptions & sourcing from abroad to be a last resort.

Many Thanks I will have a hunt about. I think I was just in shock after all the assurances I was given by my last GP who was fantastic, that when he left they would turn around and do this. I will fight the good fight & research what has been discussed on here before.

SlowDragon
SlowDragonAdministrator

You can fight this

One problem is the cost for the T3 comes out of your GP practice budget

So they want to stop it

Write to your MP, Lord O'Shaughnessy, Lord Hunt of Kings Heath and PALS

ScattyNat
ScattyNat in reply to SlowDragon

Thanks I’ll try that as well. I’m not hoping for much via the CCG, I previously appealed against them after they refused to pay for out of area CFS treatment. Primarily because they were expecting me to wait a year for treatment at a local hospital, yet at the time I was working at Kings College Hospital whose neighbouring CFS clinic could see me immediately but despite getting MP and GP support CCG refused me. Thanks for the advice.

Thanks for the advice, I’ll try that.

I am sorry you are going through this as I had exactly the same two years ago - my GP stopped prescribing and took me off T3 completely (I also have DI02 defect and feel very unwell without it). What ensued was awful - I have not felt so ill for years and was trying to hold down a highly pressured job.

I had to go private to get back on T3 and it has taken years to get back to normal (although that is still not 100!) but it became too expensive so, once stabilised, my private doc wrote to my NHS GP (a different one) to ask them to prescribe it for me.

GP said she had to go through the CCG who said ‘no’ and then an NHS endocrinologist refused to even see me based on my blood tests (suppressed TSH which is normal with T3 treatment as I understand it) so I was stuck and afraid of losing my life again.

I now have to source mine from abroad - as per Quokka, there is an option to send private scripts to Germany or there are also some reputable sources that can supply to you direct from places like Cyprus... am sure people on here (incl me) can PM you if you need details of those after trying other avenues.

It’s so awful that people’s health is sacrificed because of pharmaceutical monopoly. And very scary for people who need T3. I know there have been some discussions with Lord Hunt et al about this situation recently and some petitions signed so we can only hope things change... Good luck

ScattyNat
ScattyNat in reply to Lhop

Thanks very much for this. It’s handy to know how others have handled this dilemma.

Ann-Simpson
Ann-Simpson in reply to Lhop

Hello, just to say my experience has been exactly as you describe. I now source T3 from either Cyprus or Mexico and am feeling much better. Hopefully when they sort out the cost problem, we will be allowed it again on the NHS. I just ran out of fight after over a year of trying to persuade them to let me have it prescribed.

Mine was stopped but I got individual funding and it was reinstated. Mine did exactly what yours have done said it was due to cost. NHS England say they can not refuse on cost, only that it doesn't work. So don't panic as you've had it for many years they can't just stop it. My ccg said they stopped everyone's and only those who fight will keep it, they know most won't. So they get rid of 9 out of 10 T3 customers don't be one of the 9 xx

ScattyNat
ScattyNat in reply to endomad

Believe me I will fight because I know how detrimental this will be if I do stop it.

Excuse my ignorance but I don't understand why it is so expensive in England but can be bought comparatively cheaply elsewhere.

I have just discovered that I have inherited faulty genes DIO2 from both parents and have my first appointment with an endocrinologist on the 7 November.

I wish you well and hope things work out well for you.

helvella
helvellaAdministrator in reply to 1piglet

There is only one reason: the former monopoly supplier raising their prices by exploiting a loophole in price regulation.

(Later joined by two other companies who charge similar prices.)

In one syllable: greed.

ScattyNat
ScattyNat in reply to 1piglet

My thoughts exactly but as mentioned greed and monopoly, I thought the Government were looking at these issues but clearly they’ve done nothing about it. Hope you get on the right medication for you as well.

SlowDragon
SlowDragonAdministrator in reply to 1piglet

Originally only one licence in UK for branded Liothyronine. Bought by company and they removed branding and said it was a "generic medication" in order to exploit loophole than generic medication could not be price controlled by NHS

Full details here

m.imgur.com/a/U42vD

Loophole closed in 2017

Two new licenses issued to other companies, who charge virtually identical price.

C&MA investigation still on going

gov.uk/government/news/drug...

Lord O'Shaughnessy promised action by July this year

UK T3 is currently approx £9 per tablet

Thybon Henning 20mcg x 100 tablets is only 31 Euro from Germany on prescription only. But prescription must be from an EU based doctor, so this avenue may be blocked after Brexit

Meanwhile PrEP trial rolled out for 10,000 patients at approx £400 for 30 tablets

theguardian.com/society/201...

My gp has just told me she can’t prescribe my T3 anymore & referred me back to the consultant who said I was to have it in the 1st place I’ve been on T3 for the last 6 years & has given me back my life without it I won’t be able to function day to day & will lose everything including my own business apparently not down to cost but the fact that T3 doesn’t work but I am living proof it clearly does & I don’t know what I wold do without the support & knowledge from this site & thyroid uk xx

ScattyNat
ScattyNat in reply to Cezza

I agree wholeheartedly I feel more secure than I did yesterday that I can fight this & that I have options.

I take thybon t3 it cost €20 for one month

So is that for essentially 28 tablets? See I’m on 150mcg T4 and 30mcg T3, so I take one & half tablets a day.

T3 is 20 mg and I take one daily

FB2660
FB2660 in reply to Helenireland

I have private messaged you x

Thank u last week my pharmacy told me he couldn’t get my T3 anymore & that I would have to source it myself so I found this little pharmacy & they have given me this thybon only for the doctor to say she can’t prescribe anymore xx

ScattyNat
ScattyNat in reply to Cezza

It does seem like a purely cost lottery that GP’s are throwing everyone out of rather than pay the extortionate prices of UK Pharma companies. I don’t understand why they can’t source from abroad themselves if UK companies want to be greedy.

Same here but my GP just rang me on my mobile, no letter. My CCG said it wasn't about the cost but it wasn't safe lol. I've taken it to the ombudsman but it's a slow process but they have found failings with the CCG and are now making a formal investigation. I had to source abroad but got dizzy after a short while on Thybon and then tried the French Cynomel and same thing happened so my endo gave me some UK one while waiting for the IFR to go through which was successful. I only get it for 6 months though and then have to be reviewed. My next appointment is next month and I'm not seeing the same endo so I'm getting a bit stressed that they have sourced one that won't approve it again. Complain, complain and complain. The more that do the more chance we have of winning this battle.

ScattyNat
ScattyNat in reply to Summer64

Thanks for your story, I will fight this as well.

Hi! I get my T3 privately from the London Hormone Clinic.

ScattyNat
ScattyNat in reply to Phantom007

But at what cost?, as a single person with a mortgage my finances won’t stretch to medications sadly.

Summer64
Summer64 in reply to ScattyNat

No I can't afford it either on my pension and although doctors are happy to give us a private prescription you not only pay the cost of the medication but they stick nearly as much on top as a handling fee.

if you contact thyroiduk.org/index.html they provide you with a list of local support groups and also with a list of GP that can support your case.

ScattyNat
ScattyNat in reply to Michela

Thanks, I’ll try & get hold of Lyn, I’ve been in contact with her on and off ever since I was diagnosed back in 1999 but it’s been a couple of years. Last time was regarding the rumours doing the rounds of NHS stopping all T3 for patients.

Hi I am not sure if your position is the same as mine as I am in Scotland. Briefly my history is that I cannot tolerate levothyroxine at all so take t3 only. My pharmacist gets Thybon Henning for me as it is cheaper.. It is not licenced for use in the UK but they can find a way around this. It is also lactose free. I also have the DI02 gene defect.

When I was having my battle with the endo/Doc and others I wrote to them. Make it a formal letter stating what dose you are on, what your state of health is on this dose. Your concerns about your ability to function properly without the extra t3 and that you feel you are being discriminated against by the ccg because of the cost of this medication. That the CCG are being heavy handed and that you have not been consulted at all about this. I also mentioned the DI02 gene and provided a copy of the test results. It is a recognised lab that does these tests . Keep it brief. Unemotional and just state the facts. Do it straight away and make an appointment to see your Doctor as soon as you can. Point out the discriminatory way that you are being treated which will put your good health in danger. Take a look at the equalities act and quote from that if necessary. What you need to do is make them realise that you are not going to roll over and there are alternatives to this. See if your pharmacy can get Thybon Henning. I am actually much healthier on that brand. I had problems with the NHS one. If I can help further let me know. Make sure that you send letters which are more formal than an email. Keep it formal and keep records.

Hope this helps.

Many thanks for your advice. I will do as you say.

Hidden
Hidden

Sorry your doctor is giving you a hard time and recently I decide to pay out of pocket for new endo because I'm tired of being jerked around by a bunch of jerks. Sad part is you watch your health just disappear before your very eyes and seem powerless to stop it.....sad.

Hidden
Hidden

No they can’t. They’re not following the NHS NICE guidelines. Find them, photocopy them and shove them under the nose of your new GP. He can be excused - but CCG are trying it on

SlowDragon
SlowDragonAdministrator

Clear legal outline

CCG can advise, but that can't force a GP to stop prescribing

healthunlocked.com/thyroidu...

My GP refused to prescribe T3 for my daughter based on NHS Lanarkshire Guidelines. I complained and exhausted GP complaints procedure. I then complained to NHS Lanarkshire and they said they supported GP (without hearing my side of the argument). I complained again that I hadn’t been heard and they gave me an appointment to meet the Medical Director. I went armed with all relevant info (supported by Thyroid UK and this amazing community and the info they provided).

I outlined all the symptoms and tests she had endured over past few years. I took the symptom check list from Thyroid UK to show how many of the boxes she ticked. This was all in her medical files so could be proven and also took info on how her life was being impacted (dropping exam subjects, stopping competitive sport etc). I could also prove the improvement in her health after starting the T3 I was paying for privately. Following the meeting the Medical Director said there was sufficient objective evidence to prove she needs it and strongly recommended my GP prescribed. She now gets an NHS prescription.

It sounds as though you are in a stronger position with an NHS eno prescribing, already bring on T3 and having evidence of the DIO2 defect. All the guidance states it can be prescribed if needed and BTA say cost should not be used as a reason to stop.

I hope your case is much more straightforward with your endocrinologist support but it is well worth keeping fighting if you are still refused following their support letter. If you Private Message me I am happy to share more info on the arguments used to refuse the prescription initially and my responses to them. Good luck!

helvella
helvellaAdministrator in reply to JMo1

Well done - your daughter is extremely fortunate to have such a determined mother. :-)

JMo1
JMo1 in reply to helvella

Thank you! I must admit it is exhausting and I can’t imagine trying to do it whilst feeling ill. I would never have known what to do, how to do it or had the confidence to keep fighting the process without this community. You change lives and I am so grateful to you all, for your time, encouragement and commitment. Thank You All!!

ScattyNat
ScattyNat in reply to JMo1

Many thanks & sorry you’ve had to fight so hard but I understand it’s what you do for family. I will try the easier avenues GP Practice Manager & Endo Consultant and if I find myself up against roadblocks I’ll be in touch for help with arguments.

I'm not taking T3 yet but if I was and my doctor said she was stopping it, I would show her the PrescQIPP guidelines and the BTA statement that all patients on T3 should be kept on T3 and also stating that the BTA is not advocating a ban on T3 at all, in fact the contrary.

healthunlocked.com/api/redi...

I have found this document from NHS England

Items which should not routinely be prescribed in primary care:

Guidance for CCGs

(no date but after 2016) healthunlocked.com/api/redi...

in it says about liothyronine:

Liothyronine - We received a significant number of responses during the consultation around liothyronine. The main recurring theme – particularly from patients and organisational bodies - is that liothyronine is an effective treatment which is invaluable to patient wellbeing, quality of life and condition management. We also heard that a small proportion of patients treated with levothyroxine continue to suffer with symptoms despite adequate biochemical correction. The joint clinical working group considered the consultation feedback and therefore decided that liothyronine should still be prescribed for a small cohort of patients. The joint clinical working group changed the recommendations so that initiation of prescribing of liothyronine in appropriate patients should be initiated by a consultant endocrinologist in the NHS, and that deprescribing in ‘all’ patients is not appropriate as there are recognised exceptions.

In the 2017 NHS ENGLAND BOARD PAPER Items which should not be routinely prescribed in primary care healthunlocked.com/api/redi... they said about liothyronine:

16.The main recurring theme – particularly from patients and organisational bodies is that this is an effective treatment which can, in the appropriate circumstances

contribute to patient wellbeing, quality of life and condition management. The

impact on particular cohorts of patients was also highlighted - notably those who

are unable to take Levothyroxine-T4, or whose metabolic pathway is impaired in

some way.

17.The joint clinical working group therefore recommended the prescribing of

liothyronine for any new patient should be initiated by a consultant

endocrinologist in the NHS, and that de-prescribing in ‘all’ patients is not

appropriate, as there are recognised exceptions. The recommendation would

therefore be changed to advise prescribers to de-prescribe in all appropriate

patients.

So the NHS has not banned liothyronine.

The NHS is saying that liothyronine should not be routinely prescribed at the GPs surgery but be prescribed by an endocrinologist.

Even PrescQIPP eho made up the "guidelines say that relevant patients should kept on T3

healthunlocked.com/api/redi...

This is very important. I think that any patient who is told that the doctor wants to stop T3 gives the doctor these 4 documents that show that NHS England's recommendation is not a ban but recognises there are recognised exceptions and the recommendation is to de-prescribe in all appropriate patients.

I would then tell your doctor that you are not an appropriate patient to de-prescribe for all the reasons in this forum.

I'm sure your GP will then refer you to an Endo and the struggle continues but you then shows the Endo the BTA statement and the NHS England statement and strongly request that you stay on T3.

Thanks for all this, I shall see how things go & report back.

Go private and get Thybon 20 prescribed. Initial consultation will be the biggest outlay, the medication itself isn't expensive - £20ish for about 3 months supply (depending on your dosage, obviously)

Just wanted to add an update, despite the delay as the practice manager who said he would deal with it went off long term sick & I started getting low on meds & unable to get a repeat prescription with the 31st Dec deadline fast approaching for them no longer prescribing it. So wrote a letter to the senior partner at my GP practice explaining my situation & how detrimental stopping T3 would be for me. Anyway, he’s just phoned me, he’s spoken to the CCG & it’s been agreed providing I stay under the care of my Endocrinologist & get reviewed every year they’ll continue to prescribe, despite the cost being over £1000 with every prescription. So I consider myself very lucky indeed! So Always Keep Fighting people & wish anyone else struggling luck with getting what you need, as life without T3 would be no life for me.

Hi there, could anyone on this post private message me T3 suppliers as my current one seems to have shut down? Please do not reply on open forum as it is against guidelines but I am desperate and would be so grateful for any private messages with sources? Thanks so much...

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