Thyroid UK
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Denial of T3 - legal recourse

Hi all,

If a patient is denied T3 on NHS prescription, does that patient have any legal recourse? I've managed to recover my health taking T3 only but up to now have been sourcing it privately. Like many others I am finding it harder (and more expensive) to source it every time I need more so I am at the start on my battle to try to get it via the NHS. I know I am facing an uphill battle and it is unlikely that I will get it (my CCG will not prescribe T3) but I'm just considering what options I have when I get the inevitable refusal and if any are legal.

Many thanks

Mike

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I am in the same boat as you Mikegov. Just before all the problems started about T3, I was given permission to have prescribed T3 and an off-licence T4 by local CCG. As soon as T3 problems started I was denied this before it had started. I have been self-sourcing T3 and T4 since mid-2013 and have just found that mjy source of T3 has ended. I have another year's worth of T3 and then what? It has made such a difference that I don't know if I will be able to go back to just T4. I am following this thread with interest and will do anything I can to help.

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Sad to see others in the same boat. T4 made me very ill so unfortunately is not an option for me.

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I am not sure if you know that TUK and some other forums have had an audience at the House of Lords. I shall give you a couple of excerpts:

19/10/2018

Next step in #T3Campaign!

Debate in House of Lords 20/6/2018

read more

(Details are on the right-hand column of this page:)

thyroiduk.org.uk/index.html

Also if you look on the left-hand side you will see Campaigns.

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Thanks Shaws

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Hi J Bee, wonder if you could p.m. your source of T3 that has ended please.

Really grateful. I am due to place Order & appreciate advice on that,

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Absolutely, there's plenty you can do.

First get a doctor-endocrinologist on board with medical and thyroid knowledge. Forget stock GPs.

Have in writing from endocrinologist your clinical need of t3.

From there on (or even before) start fighting formally and in writing. I'm not saying it's going to he easy or quick but if your persistent, you'll get there.

All the best.

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Thanks

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You can email Dionne @thyroiduk.org if you need the name of a sympathetic Endo. I don't know the cost of a consultation.

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Thanks. I dont have a very good track record with endos. The first, although starting me on T3, said people taking high doses of T3 (over 25mcg) were going to kill themselves, and the second, who had taught all over the world and had an alphabet of letters after his name, wanted to take me off T3 and put me on anti-depressants

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Reading your response saddened me because these are the people who hold our health and our life in their hands. If not treated optimally we could lose our jobs and health.

One of our Advisers (now deceased) took 150mcg of T3 daily!!! He had thyroid hormone resistance and discovered this himself researching as a very young person and going through some tragedies within his past family histories. He also found that those who had resistance to thyroid hormones only recovered with T3.

Considering that T3 is a life force for our whole body, brain and heart in particular isn't it surprising that neither FT4 and FT3 are tested. Some of the bodies on this forum cannot function on levo but the doctor will insist that this is all that is prescribed but if the patient feels far more unwell on it, something isn't right.

Some of the comments above made to you by Endos just shows how inept their training is. As I've said before they don't look at the whole picture and only look at a TSH and T4 instead of the whole TSH, T4, T3, FT4, FT3 and antibodies which I think should be the minimum if our complaints are pointing towards hypo. Not that my doctor(s) ever thought of hypo and I eventually, through a passing comment about 'hypothyroid' made at the airport when I thought I wouldn't get back home and went straight to A&E. After an overnight stay and running on treadmill etc etc and discharged as 'probably viral with high cholesterol'. High cholesterol is a flag. I diagnosed myself next day and TSH was 100. GP phoned to ask who gave me the form and I said "I did". She told me to come and get a prescription as I was hypothyroid and this was impossible for me. Just as well I had someone to get it for me.

That was just the first part - the second took sometime and finally with TUK's advice/help I found a way through the maze, despite the guidelines which are now very much more severe. No options of NDT - withdrawn due to False Statements made by the 'professionals Association'. Now T3 withdrawn. It is utter nonsense that they tell 'tall stories' about it in order not to prescribe. It doesn't "save" the NHS money but the patients are now in a 'parlous situation' - a statement made by another doctor who was scandalised by the way we are diagnosed/treated and for that he was pursued by ? and appeared before the GMC several times but found doing no wrong. What other doctor on this earth had 10,000 testimonials from grateful patients whose lives he 'saved' sent to the GMC. (p.s. he was not an endocrinologist).

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Is it Doctor Skinner you are talking about? It’s due to him that I was prescribed T3 several years ago. I am in danger of now having it stopped. Like many other people on this site, that would take away my life.

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Don't get discouraged seeking new endocrinologist by your past experience with them. If you look hard enough you'll find one who listens and take actions.

I have encountered buckets full of BAD and useless endocrinologists too in my past.

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If you need a private appointment, email Dionne at Thyroiduk who has a list of helpful endos. If you choose a name, you can put up post and ask for private message to be sent to you if it's worth your while consulting with him/her.

tukadmin@thyroiduk.org

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Thanks Shaws will do that

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Mikegov- I take 250 mcg T3 daily and have for years. It was prescribed by a physician here in the US. I know plenty of people who take 200 and up (thanks to a Facebook T3 support group). I am most certainly not dead, though felt like I might be when taking 125 T4.

I have had heart stress tests and bone density tests and all that Jazz. Everything is FINE. I am fine. I run, I lift weights, and feel good. I’m saying this because here in the US (I’m Swiss but live in NY), there are doctors who prescribe T3 and understand it... in fact when I went for a second opinion, that doctor wanted me on 400 T3.

In the US , a compounding pharmacy will make T3 if you have an RX (I recently switched to a compounding pharmacy due to cytomel shortage). My doctor gives phone consults, even to people abroad -I know this for a fact. Happy to give you his name if you want it. If you have a phone consult he can give you the rx and then the compounding pharmacy will make it in 24 hours and ship it to you. If you speak to him tomorrow Monday and the pharmacy sends it Tuesday you can have it in hand by Thursday morning in the UK.

So that’s one option.

I believe his consult fee is $350, so not cheap, but if you ask him to put 6 refills on there, it’ll last 6 months and I can’t imagine the follow up is that much money. The pills themselves are about $100 for 150 pills (if you take 2 a day... would last a little over two months). I will of course give you the name of the pharmacy as well (there are dozens but I love one nearby in Long Island).

What nonsense! I would die if I weren’t on T3. Certainly not by being on it.

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Thankyou - I may well contact you if I cannot get any joy here

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"a compounding pharmacy will make T3 if you have an RX"

What is an RX please?

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A prescription :)

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Your information is reassuring and you sound amazing and full of life. 💕👍😁😘 Thank you

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Hi Shaws - would Endo be in TUK list ?

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I doubt it as I believe they only have UK ones but there's no harm in emailing Dionne at TUK. As you know, no names must be posted on the forum.

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Yes of course, thanks Shaws

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Hi this email address doesn’t seem to be correct ? Can you confirm please ?

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I don't understand why as I've copied and pasted it often but I see it hasn't changed colour as it usually does. You can click on Dionne's name on the following.

thyroiduk.org.uk/tuk/About_...

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Perhaps the lawyers who took on the case for haemophiliacs over contaminated blood might consider a class action

This class action could cover several aspects

1) All NHS patients who have had T3 prescribed and then withdrawn, often without notice and directly against guidelines

2) Anyone who's had positive DIO2 gene test and yet still denied T3

3) Patients whose NHS consultant has tried to prescribe, but individual funding request refused by CCG

4) Patients whose NHS consultant has diagnosed they have clinical need, but told NHS won't prescribe. Patients then told if they wish for treatment to buy their essential T3 medication online, often without private prescription

5) Action against CCG's that have imposed blanket ban regardless of clinical need

Details of the solicitors involved in haemophilia case

factor8scandal.uk/contamina...

collinslaw.co.uk

lynmynott , LouiseRoberts, could Thyroid UK and other Thyroid support groups like the Thyroid Trust contact Haemophilia Society to talk tactics?

haemophilia.org.uk

This newspaper article below recommends taking case to Parliamentary and Health Service Ombudsman

Perhaps if every person who is within categories 1-5 above made official complaint in writing ......they may be forced to look into this

dailymail.co.uk/health/arti...

ombudsman.org.uk

gov.uk/government/publicati...

Principles that guide the NHS

Point 4

Clearly having T3 denied despite clinical need is not patient centred care. It's cost driven

How to make a complaint

gov.uk/government/publicati...

So far, despite hundreds of letters to MP's , Lords etc....all we have is words and hand wringing .....action was promised by House of Lords for this July.

Meanwhile more patients turn up here every week, often daily......same story repeated time after time. Doing well on T3 but NHS prescription suddenly withdrawn

Hundreds of patients then forced to buy online like some sort of illegal drug addict.

T3 without prescription increasingly difficult to get.

T3 with private prescription uncertain after Brexit.

On a personal level would suggest to anyone denied T3, that you get DIO2 gene test, if not already done so. If you test positive it's extremely strong argument that you have clinical need for T3.

See an endocrinologist from the recommended Thyroid UK list. Get it in writing to your GP and on your medical record that you have clinical need for T3. Then take the complaint further

Initial consultation with endocrinologist usually £200-£250

DIO2 gene test £160

Full Private blood test £99 (£79 offer price)

Anyone arguing with GP to get T3 reinstated. Print out any Liothyronine guidelines you can find and highlight paragraphs that apply to you. Insist it is put in your medical record that T3 is withdrawn against your wishes.

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Great suggestions re the class action and Factor 8 process 🙂

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Maybe a Poll on the Forum to see how many have had T3 removed ... as you mention it is a daily problem and sad to read. When oh when will these companies be made to lower the price ? Cannot see much happening on that front ...

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Lord O'Shaughnessy promised action by July this year absolute latest .....had hoped there might be an announcement during Thyroid Awareness week, this week.....still nothing

Law past last year so that Government could take action on over priced generic medication

LouiseRoberts - can we have a poll?

For those on T3 - categories

1) who are still prescribed on NHS.

2) Who were prescribed on NHS, now forced to self medicate or private prescription.

3) Those on T3 via self medication route as unable to get acknowledgement of clinical need.

Separate simple poll for those on T3 ......Are you

Male

Female

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Very disappointing ! Words are cheap ...

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Great post - thank you

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Excellent advice and a very good overview how unfortunately the process is, I think iav covered the majority if not all of your points! though it its been extremely stressful beyond words and its took 12-16 weeks on no medication only supplements (I researched to take instead of levo because the nhs refused to give me the correct medication even when I couldn't get sick pay and was to ill to go to work which resulted in financial hardship, the consultant didn't give a dam! ) So please I urge everyone in the same situation to follow these points, stay strong, persever and fight for the correct medication we all deserve a desirable quality of life which the right medication will give us and it will pay off.

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Great post. Just a thought - is there a sex discrimination angle here?

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Apparently 99% prescribed Liothyronine are female

So yes....possibly

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99%!! That's astounding. Do you have anything to corroborate the figure being that high (or anywhere near close to it)? Maybe it would be worth setting up a poll on this site to see how many need T3, what gender they are and how many have had their T3 prescription withdrawn.

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It’s called a group action in the UK. It’s a class action in the States.

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Which CCG area are you?

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Thurrock

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I don't personally take T3 but I know that one of the NHS doctors who will prescribe it is < Doctor name redacted > at Kingston Hospital. Try and get a referral from your GP to see him? Good luck!

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Thank you

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I was taken off t3 a year ago, but my GP wrote me a prescription for an extra month whilst I fought the decision. I quoted the NHS Patients Charter in my letter, as well as the scandalous cost comparision of T3 here and oversees. My t3 was reinstated within a week. Im not saying that its that easy for everyone, but I think the fact Id involved my MSP helped. She had written to the clinical lead to say she was contacting the Scottish Health Minister. We should not take this lying down, fight all the way. Its the outrageous cost thats at the root of this, so why on earth is that not being addressed? Best wishes x

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I recently sent a long email/ "essay" on T3 to Jeane Freeman the Cabinet Secretary for Health, and referred (in no particular order here) to -

The Patients Charter

Quoted Nye Bevan,

Mentioned William Ord' s paper (1877) on his research into what turned out to be patient deaths due to thyroid failure, Listed comparative prices of T3,

Rediculous reliance on TSH and T4 testing

Explained my thyroid journey and how it was a reflection of that of very many other ill people,

The ineffective levo treatment I received,

Private tests

Buying T3, no guaranteed supply

Self medicating

Positive DIO2 genetic test and what that implies and necessitates

T3 tests stopped

T3 withdrawn

Consequences of that withdrawal

....and more

No response to date!

I guess it will join all similar entreaties in a file (I imagine) entitled "Rants".

It looks as if Lorraine Clleaver's amazing five year battle to change things has resulted in little more than "pass the buck" and fine words!

Much work is being done behind the scenes but however laudable that is, will it produce the clout to radically change this debacle. For all our sakes, I hope so!

We are up against the power of politics and wealth and how that barrier might be broken down is the enduring question.

A few people may have success with pleas to Health Boards/CCGs which, while great for them, doesn't eradicate the current madness that envelopes the whole issue of T3, or, raises awareness of how vital it is for every patient who requires an adequate and constant supply to ensure their wellbeing.

Accessing appropriate medication via the NHS should not be, and was never intended to be, an additional struggle for already sick patients

Rant over!

DD

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I wrote to her too. No response either. Hmmm

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Do we have to chain ourselves to the railings before they listen....it's becoming clear (I guess) that they now know they are wrong.

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I had a reply this week, but not from Jeane Freeman!

Basically said the responsibility lies with each individual Health Board. Really!!

This guy also said there are five suppliers of 20mcg liothyronine listed in the British National Formulary....I 'm not convinced of this so currently having it checked!

I'm coming to the conclusion that it's not hypo that will drive us mad but the those who refuse to take cognisance of this rapidly unfolding scandal.

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holyshedballs has posted/replied many times recently and seems very clued up on the legal issues.

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Hi Mikegov, I had some medication withdrawn around 6 years ago (not T3) But had it reinstated after a long & bitter fight lasting around 18 months. The NHS deliberately has in place a very complex system when there is a need for a patient with a grievance or complaint to navigate it.... For myself I found that by first approaching PALS independly to get the correct preliminary advice on beginning the process, was a good move.

I then arranged to meet my local MP through his clinics in the area, which also proved extremely helpful. I found that once I had involved an MP, the Practice Manager at my GP surgery & hospital consultants etc all magically became more available!

After countless meetings. phone calls & many long, long emails to the relevant parties I eventually was granted back the medication I needed.

All I can say is be bloody minded & be bloody persistent! It’s a slog and a complex one too.

But I would definitely recommend contacting both PALS & your MP - as I found that once I had done this personally, things began to finally move and I was able to access an understanding in exactly how to proceed with my case. Good Luck!

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Hi, I too had a problem with VIT D they withdrew it although I had been very ill with deficiency..no need to go round the houses I went straight to NHS ENGLAND they gave me a caseworker on the same day and put the whole thing right they have so much power..for those with problems that the right way to go and you can do it over the phone..good luck all.

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Thankyou very much for your advice

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Mikegov

Here's a couple of Thurrock CCG links saying T3 is possible via endocrinologist

thurrockccg.nhs.uk/about-us...

thurrockccg.nhs.uk/about-us...

Near you, but different CCG, is Maidstone. Here they apparently offer DIO2 gene test on NHS and guarantee NHS prescription of T3 if test positive. Find more info on Improve Thyroid Treatment campaign on Facebook

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Thanks SlowDragon

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hi slowdragon, i’m not a FB user (though have old profile) and can’t find what you are referring to re Maidstone CCG. I have previously tested positive for DI02 but my daughters haven’t yet, are fighting to get T3 back as i can’t afford to keep purchasing /blood tests for us all.

could you possibly post or PM me a link?

Thanks

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It's the Swale CCG (Sittingbourne & Faversham area)

Improve Thyroid Treatment campaign is a closed group......just need to request to join

Search DIO2 Kent within group

Not sure if you can open this link

m.facebook.com/groups/47337...

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Mikegov

I recently had a complaint upheld by the Scottish Public Sector Ombudsman (SPSO decision 201703051 which is available to view on their website). The NHS Board have apologised for refusing to give my daughter an appointment to see an endocrinologist whilst she remained symptomatic on T4 treatment with bloodtests within normal range. On the back of that I requested to the NHS Board that she is now given an appointment to see an NHS endo (as I am still paying for her to see someone privately) and they have just agreed this.

Although this feels like a success, I am aware the NHS endo might not agree with the current very successful treatment plan and refuse to prescribe the T3 which has changed her life. I will then need to go through the whole complaints process once again (it has taken over a year). If she is not prescribed the T3 she needs after exhausting all complaint processes, I will definitely go down the legal route.

On the bright side, I have managed to overturn the GP refusal to prescribe, NHS Lanarkshire’s initial support of the GP and now have an upheld complaint against NHS Greater Glasgow and Clyde NHS Board. Definitely one small step at a time.

I strongly recommend you keep fighting your case. I believe it is the only way to change this horrific situation which affects so many. Please private message me if you want any more details about the complaints processes I have come through.

Someday we might meet at a class action meeting 😀 Good luck!!

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Thankyou I'm sure I'll be in touch and I hope your daughter gets the care she needs very soon

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My T3 was stopped without notice about five years ago. I didn’t bother to respond as my surgery had been less than helpful. I take 200mcg per day and cannot see my GP or even an endocrinologist prescribing that amount of T3. I do not have a problem if I can get enough T3 from a good source but this is proving to be very difficult now and I am always nervous about ordering from abroad, which is what we have to do. Who knows what we get? I cannot see that T3 will be prescribed to all while it is so expensive in this country.

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The pricing of T3 is nonsensical. I bought a month's supply in Crete in August, over the counter - and cost under €10!

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I know, it is ridiculous. The difficulty of buying abroad is that how does one know that it is available otc? I have bought some in Paris but it is highly likely that that particular pharmacy is no longer selling it and that other pharmacies in Paris do not sell T3 otc. I have tried various other places in France and have had limited success. (I can speak enough French to make myself understood.) How did you know that you could buy T3 in Crete? I also managed a couple of packs on a Greek island this Summer but none in other countries on our trip. One cannot just jet around the world in the hope of getting T3 otc. On 200mcg a day I get through the pills quite quickly.

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Hi Penny - I had read about people finding it available in some pharmacies but not others so thought I'd give it a try. The pharmacy was in a very small town. I tried 4 or 5 pharmacies in a bigger town nearby and none would sell it to me.

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In relation to the Lords - Following Lord Hunt's debate in the Lords, he called a meeting with 6 thyroid patient groups in July, and since then a great deal of work has gone on behind the scenes. The groups have presented a huge piece of work to the Lords, with the approval of BTA. This will be made public very soon, and then we hope for more action.

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Sorry if my questions seems silly but Im in the US and getting prescription T3 here is easy enough if and only if your Endo cares to let you try it and getting a natural thyroid like Armour is no big deal at all. Now getting proper thyroid blood work here in US is a nightmare for some reason I constantly argue with endo.

My question is why are you denide T3 medication and a natural thyroid medication what is the reason, is it supply troubles,cost or something else.

Sorry curious to know why the healthcare system wants to keeps it's population sick isn't it counterproductive from a financial perspective.

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There was blatant exploitation by pharmaceutical companies of a legal loophole that did not allow control of the price of generic, unbranded medications, purchased by the NHS. (Our monopoly UK health service)

Single license generics with no competition were systematically bought up and prices increased by vast amounts.

Full account here

mjauk.org/wp-content/upload...

Loophole now closed. Two new licenses issued for two other brands of T3.....they came in at virtually identical price.

Cost of Liothyronine 20mcg here in UK is approx £9.50 PER TABLET .....or £950 for 100 tablets.

Liothyronine from France or Germany only 31 Euro for 100 tablets. Greek and Turkish T3 even cheaper......but the NHS is unable or unwilling to bulk buy from abroad.

Instead there is extremely determined action by CCG's (local area health authorities) to stop prescribing T3 for all patients, often without warning and no referral back to endocrinologist.

NHS point blank refuses to consider prescribing anyone with NDT.

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For T3 almost certainly cost: theguardian.com/business/20...

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I am sorry to hear your news, as you kindly guided me to source T3 from abroad some months ago and I have successfully bought it myself, and I like being independent from all the doctors who tell you straight that you do not need it, thus giving them the clout to prevent us having it on the NHS Good luck to you. Ann

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Thanks Ann - hope things are ok with you

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Supplies from abroad are suddenly increasingly difficult.....hence so many patients being forced to go back to NHS or in search of private prescription

Or will have to consider changing to NDT

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Why do you think supplies from abroad are hard to source - is it due to large demand from patients from the UK/other countries that cannot get it from their domestic health service?

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Combination of the perfect storm

Mexico supplies apparently not available and no one seems to know why, or if will return

Greece, over exploitation by several websites selling to hundreds of people from abroad. Now largely prescription only

Cyprus supply closed down recently

France and Germany were always prescription only and Dr must be registered within an EU country. So that's going to become a big problem

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Hi Mike, I see that a few people have already mentioned the ongoing campaign for widening access to T3. However, drawing on my legal training here, if you have also been tested for the DI02 gene, which means that you have a inherent predisposition to poor T4 to T3 conversion, then you could go down the malpractice route if your GP or endo is denying you free T3 regardless of cost to them. thyroiduk.org.uk/tuk/testin...

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I have had the test but I've read conflicting information as to whether it "proves" the need for T3. Certainly if it did, then I should imagine quite a few patients would be able to use this in fighting for T3. Do you have any more information on the interpretation of the results?

Mike

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I don't to hand I'm afraid, I'm just responding from my phone at the moment. However, I will certainly forward it should I come across further info. From a purely common sense standpoint, I'd suggest that if your test came back as positive for DI02 and you only feel better while taking T3, then - because everyone's biochemistry is slightly different anyway - that verifies the validity of the test result for you in itself. And if I were in your case I'd proceed based on that data. All the best

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Professor Colin Dayan is researching why some people need T3

As I understand it, DIO2 gene variation is confirmed as reason patients do better on T3 /T4 combination

academic.oup.com/jcem/artic...

But it's not the ONLY reason someone might need T3

So testing negative does not mean someone definitely doesn't need T3

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Hi is that alpha I or numeric 102? Might ask my endocrinologist if I could be tested for that? Thanks in advance!

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Three letters and a number!

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i’m in similar position. and i’m a lawyer. i’m interested in exploring this too. i’ll read the comments and respond in detail tomorrow

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Hi mikegov

Yes I 'm in the same position, doctor won't prescribe T3 or give me private prescription, my local chemist will source it for me, cost £100 per box, but need private prescription. I emailed 6 people at the House of Lords a few weeks ago but haven't had any replies.

Presently I have T3 that my sister purchased in France with no prescription but dreading when this runs out.

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Helensusan

Roughly where in UK are you?

There are endocrinologists who recognise need for T3

Email Thyroid UK for list of recommended thyroid specialists,

please email Dionne


tukadmin@thyroiduk.org

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I initially received T3 through private endo who said bloods showed I don’t convert. Had DIO2 gene Test inherited possible faulty gene from both parents. Thought this might get cCG permission but no. Also have had TotL Thyroidectomy. Finally asked Gp if he agreed I had medical need he said Yes. I said then it’s up to you to prescribe as you admit need and CCG s fo not have any legal power to stop you. I said I’d complain to GZmC as my health and safety was being put at risk. He now prescribes as long as I keep paying private endo to monitor but at least I’m not paying for scripts too.

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That's a very interesting approach. Can I ask if that was a verbal discussion with the GP or written?

So is it ultimately the GP who decides that a patient can have T3, I was under the impression it was the CCG?

Thanks

Mike

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nHS England and Healthwatch and GMC have all confirmed that responsibility is with the medic in front of you. CCG wrote to me as did the other two saying they can advise GPs but they don’t have final say. Problem is too many people accept it when GPs say they’re not allowed by CCG. Requests to some CCGs as to whether they punish those who go against them have had responses that they don’t. However some GPs clearly feel pressured to follow CCG advice even though it is not legally binding. Andrew Green if GMC said that if GPs acknowledg clinical need and don’t prescribe then complaints will increase as they could be in breach of contract. He said if GP has to choose whether to upset patient or CCG it should be the latter every time. This is what I discussed with head of practice when my named Gp told me she was “terrified of what they’d do to me cos it’s red on the screen”. He is now my named Gp and takes responsibility. I discussed this face to face and left him with it all in writing. I have uploaded template letters with this info on ITT group on Facebook or if you pm me your email I can send you it. If a medication is in NHS prescribing list, which T3 is then it can be prescribed.

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Thanks

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Hi Helsan. please could you kindly email me the template? niamhoreilly2@hotmail.com

thank you for your efforts and research, clearly a sensible approach and makes total sense to me. If there are regular refusals of T3 by GPs it could well be the case that a class action could take place. although would need funding and an agreeable solicitor, as well as being able to show all reasonable steps taken first i.e, complaints, it’s something i’m interested in pursuing

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Sorry for jumping in on this thread but I would be so greatful if you could forward me this information too. Thank you.

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