Writing to MPs/Jeremy Hunt: update, 12th June

[Tracer]

I've been very lucky and found a new doctor who prescribed some T3 for me, for the past ~2 years. I've now had the letter saying he won't any more because of the cost. I've written a letter to him and copied it to my local MP and Jeremy Hunt. I'm sure it won't make any difference but I know others on here have wondered about doing so - if a lot of people write around the same time, would it raise any interest do you think...?? I'm not expecting to still get T3 but thought it would be another way of raising the whole issue...?

My letter:

Dear Dr. .....,

Re: Liothyronine Sodium Tablets

Further to your letter dated 19th April informing me that you will no longer be willing to prescribe liothyronine (T3) for me.

I really do appreciate you prescribing the drug for me and, as you know, I have greatly benefitted from it and always failed to get well/worsened whenever I took thyroxine (T4), either on its own, in combination with T3 or as part of an NDT. As I assume you intend to prescribe T4 for me in the future, I am, as you suggest, “disappointed” and do not look forward to the return of the unremitting bone pains, headaches and crushing fatigue (amongst many other things) which will ensue.

Whilst I’m sure T4 is a beneficial drug for many hypothyroid patients, for those of us - and there are many - who have been a long time undiagnosed and/or have Hashimoto’s disease, the auto-immune consequences and knock-on physiological stress to our adrenal glands creates problems with converting T4 to T3; the T4 builds-up in our bodies, we remain hypothyroid and yet look overmedicated in our TFTs. Although you have been my GP for only a short while, I think you know my history: a thyroid specialist was certain that, from my medical history and photographs, I had been hypothyroid at least since the 1970s but probably from childhood; I was actually diagnosed in 2009 and started on T4 in 2010. Hence, the NHS failed for decades to diagnose my condition and that of comorbid coeliac disease, precipitating the conversion and adrenal problems I now have, which necessitates my use of T3. In 2007, my mother actually died from undiagnosed hypothyroidism, having suffered appalling myxoedma madness and horrendous ascites before falling into a coma, from which she never recovered.

I do understand that the NHS has many calls on its money and that hypothyroidism is certainly not a ‘sexy’ condition which attracts money-spend. However, frankly, it is galling that I am to be prevented from having a drug which helps me greatly when the NHS/NICE system wastes so much by failing to stand up to the pharmaceutical industry. I do appreciate drug companies must recoup their considerable costs and make a profit, and few would deny them a handsome profit, but the profits that they earn, at the patients’ and taxpayers expense, is scandalous: you state that the NHS pays £10,000p.a. for my 1456 tablets from a (monopolistic) supplier, anywhere else in the European Union the most these would cost today is £228.85; from other countries, even less. You will know far better than I the scale of such abuse and it is a disgrace which the NHS and governments fail/refuse to tackle. Furthermore, the scandal is greater for the fact that, as I write this, Mercury Pharma is being investigated, once again, under the yellow card scheme for faulty batches of T3 (from which I am still recovering).

[I will....]

I am copying this letter to my local MP and to the Secretary of State for Health, in a bid to add yet another voice to this issue.

Yours sincerely...

cc Local MP

Mr. J. Hunt, Secretary of State for Health

[Jazzw]

Fantastic letter!

[Tracer]

Oh, thank you!

[jimh111]

I have chased up this issue via my MP.  I suggest you book an appointment and see your MP.  Do not write to them, go and speak directly to them.  It's the only way to get progress.  They should be sorting out the cost, not restricting patient's medication.  By the way your 1456 tablets would now cost £13,426-40, the price went up on 1st March to £258-20 for 28 tablets.

I received a response from George Freeman, Parliamentary Under Secretary of State for Life Sciences:-

"If a patients's local clinical comminssioning group (CCG) decides that a treatment that a patient and their doctor have requested should not be provided, patients must be given the reasons for that decision in writing.  Patients can appeal against this decision through their clinicaion of by contacting the CCG directly to make a formal complaint".

Rather than persue your GP who is in a difficult situation I would telephone the CCG and request (demand) a written explanation as to why your prescription is being declined.  When you get that follow it up with a formal complaint.  If they drag their heals chase them up.  These CCGs are cowardly, pushing the problem onto the patients instead of tackling the drug companies.

You will find Jeremy Hunt absolutely useless.  Your letter will be passed to a junior who will write some general waffle - I've been there.  That is why it is essential to get your MP involved, for your sake and for the benefit of other patients.

[Tracer in reply to jimh111]

I agree with what you say and have already booked an appointment with my MP - which isn't until May13th - but he has the letter in the meantime.  I'm not really trying to pursue it with the GP, I realise he's in a difficult position and he's already used the 'if a practitioner thinks it's the best medicine for the patient' type of angle to give it me this long but I just hoped it might be one more voice raising the point, but I assumed what you say about Jeremy Hunt, hey-ho..

[jimh111 in reply to Tracer]

Great.  You're a star, especially when you have all this stress.  I found putting the tablets on the MP's table saying these cost xxx in France but the NHS pays yyy had a big effect.  Good luck.

[Tracer in reply to jimh111]

A good idea..!!

[galathea]

Maybe you could point out that the scandal of price increase has happened because the  Bnf only seeks to check the prices on named brands of medicines.  It is always assumed that generic medicines will be cheaper than named brands. 

      The liothyronine we used to get in the uk was called  Tertroxin and was manufactured by   Goldshield.       Later Goldshield merged, or were taken over by another manufacturer and  the branded Tertroxin was replaced by generic  (unbranded)  liothyronine.        As there is now no branded version subject to price controlin the Uk, the generic price has been allowed to rise astronomically  here.

Xx g  

[Tracer in reply to galathea]

Yes, good point.  I have notes for when I see my doctor - who I'd booked to see regarding health problems just two hours before I got his letter! - and I intend to give him (and my MP) details of other meds, prices etc.

[spongecat]

That is a marvellous letter, Tracer.

Something MUST be done about the pricing and sourcing of T3. It is absolutely scandalous. This sort of nonsense is going on right across various government interests. Remember (I think it was the MOD) that were paying a ludicrous amount for lightbulbs? Something farcical like £75....each! Not enough pen-pushers querying this sort of thing or department heads keeping schtum, maybe due to vested interests? You need to keep an eye on these things: this year my house & contents insurance was quoted at £460 so I jolly well spent half an hour on a comparison website and got exactly the same for £180 and even that quote will give me £50 cashback in 70 days!

Absolutely fed-up with the fact that doctors and so-called "consultants" keep thinking that everybody is the same and requires the same treatment.....dammit, even Type 2 diabetes is fine tuned to a certain extent compared to hypothyroidism. Too many claim they are "too busy" (in my GP's words) to read up on latest research and recommendations instead relying on faceless quangoes with outdated policies to tell them what to do and who do not appear to have any interest in treating PEOPLE to make them well and have some kind of quality of life. Patients having to be seriously ill before even being offered a trial for crying out loud.

It really makes my blood boil....

[Tracer in reply to spongecat]

Here, here!  I've said to my GP before that Endos couldn't give a fig about hypothyroidsim and are only interested in diabetes.  I used to think GPs and specialists would get some sort of professional satisfaction out of trying to help 'non-standard' patients; how wrong I was and how naive.

[LindaC]

Well done and good on you Tracer!  Suppliers just totally rip off the NHS and it is the NHS that is absolutely responsible for that, no one else.  Surely someone with even half an 'A' Level from their Corporate Governance charade could track down cheaper and more reliable suppliers?  Seems that this constantly crying hard up establishment simply doesn't give a damn about PUBLIC finances!  (In the 1970's 'they' were to reduce the top-tiers of 'too much management'!?  Now...)

Tracer, I hope you get something sorted out soon; unbelievable, but this is what many endocrinologists country-wide seek to achieve. Take care and be well xx

[Tracer in reply to LindaC]

Thanks, I'll let everyone know IF I hear anything..!

[nightingale-56]

Hi Tracer, this is a brilliant letter that conveys our feelings on this scandalous waste of money for a very inferior product.  My son and I are still suffering from MP Levothyroxine from 6 years ago.  This company need taking out of the equation as falling far below quality.  Let us know what reply you receive. I will consider writing again.

[Tracer in reply to nightingale-56]

Will do and yes do write again, you never know it might achieve something.  I hope you both get better soon.

[shaws]

Tell your GP T3 is a life-saving hormone for you and is the only one enabling you to have a healthy life.

Maybe write to Lyn Mynot of Thyroiduk.org.uk who might have some expertise as she attended the Scottish Parliament when Lorraine Cleaver had a Petition before the Scottish Parliament and she may able to advise the best route.

The RCoP and BTA are insistent that T4 is the 'perfect' solution and as most of us on here know, it isn't.

[Tracer in reply to shaws]

Yes, good idea.  Through TPAUK, I've volunteered to undertake reviewing of the NICE CKS hypothyroidism guidelines (I've commented on the eixisting ones - interesting reading!! - and will do so on the revised guidelines due out later this year).  I don't know if they're still asking for patient reviewers but worth doing it if you can.

[shaws in reply to Tracer]

Do you have a link for the patient reviews?

Good luck on your reviewing of the NICE CKS hypothyroidism guidelines.

[Tracer in reply to shaws]

I'll PM the information to you just in case I'm not meant to give it out, although I think it's fine!

[nightingale-56 in reply to Tracer]

Hi Tracer, by chance  (doing some filing) I came across this from TPAUK this morning, so am going to offer to be a reviewer.

[Tracer in reply to nightingale-56]

Jolly good, the more the better!

[Tracer]

Absolutely!

[Musicmonkey]

That's a good letter Tracer. I hope it yields the right result

[Tracer in reply to Musicmonkey]

thank you, ....we can hope...!

[Amazon07]

Great letter Tracer!!! I currently live in Hungary and - although T3 is not licensed here - my GP prescribes it for me and I get it through a pharmacy here that does an international service so they get my Trijodthyronine Sandoz. And yes, a whole year supply comes to about £250, so the complete and absolute BS prices the NHS claims the T3 costs, is just nonsense! They need to employ someone that can get a better supply chain and simply reject idiotic pharmaceutical companies that try to charge hideously stupid prices! Has no one in the government or JH's office or any big wig in the NHS thought of this?! They'd rather deprive patients of vital meds and then pay out huge amounts of money for treatment of conditions related to hypothyroidism, than actually find a cheaper supplier?! Bunch of lazy, stupid morons! Arghhhh! 😤😖

[Tracer in reply to Amazon07]

Very interesting and another price to add to my list, thanks.

[Treepie]

I had the same response from Freeman and a later one from another Minister. They know ,but are lazy,incompetent and ineffective.

I do ok on T4 but was incensed by the cost of T3 to the NHS.

An excellent letter.

[Tracer]

thanks, glad to hear T4 is OK for you.

[Afaghieh]

Hi tracer

Well done. I am in correspondent with Merc pharma. Some time ago my t3 barrels were unsealed I returned them to the Pharmacy. In the last 4-5 months I have gained 4Kg in weight.

I contacted Merc and asked whether there were any fake (t3's) allegedly around and told them the reason.

They got a bit twitchy and several times asked me  what I meant.

Any way I gave them all the info re my health and I hope they come back to me with an answer!  

[Tracer in reply to Afaghieh]

They have two pots of tablets of mine at the moment (batches 83200 and 83201) to analyse so waiting to hear the result.

[Afaghieh in reply to Tracer]

Hi Tracer

This time they didn't asked for the pots.

[linda96]

Hi, just wanted to say it was a fantastic letter. 

[Tracer in reply to linda96]

thank you!

[linda96]

Hi Tracer, 

I joined HU last year and have been constantly appalled at the derisory treatment dished out to those requiring T3. And The costs quoted by big pharma aren't justified in any way shape or form. If I knew how to start a thyroid revolution ......  (might just  look it up on YouTube!).  

I'm hypo but have a few other comorbidites which cd be affecting me in the same way so can't say if I'll ever need T3, but you have my total sympathy for the fight you have in front of you. 

I'm putting to follow this thread because I really want to be with you on this.  

Jus going up the shed to clean up my pikestaff and sharpen the arrows for my longbow!  

Best wishes

[Tracer in reply to linda96]

Thank you - and happy shooting!  Many, many years ago I was a member of the Bowmen of the Peak and enjoyed it hugely - there's no way I could draw the string now!! (shooting targets BTW, not living things)

[puffyface]

Well done Tracer. A fantastic letter. X

[Tracer in reply to puffyface]

thank you!

[dolphin5]

Well done, and I hope someone takes note!

[Tracer]

Thank you. I'll let everyone know what happens....if anything!!

[bear10]

Just wanted to applaud you on a fantastic letter.  I hope it is I have ticked to follow you as will be very interested in your progress regarding this.

[Tracer in reply to bear10]

thank you!

[Tracer]

UPDATE, 29th April

I saw my GP today and he said that he will no longer prescribe any med. containing T3 - so hence not NDT, either - and so I am being offered only T4.  He said he consulted with the endo (and I expect he did, he's a decent Dr) and they 'no longer use it at all, as the research shows it's so harmful'. 

I've told my Dr when I see him again next week (pursuing unrelated health problem) I will give him a mass of research which either states it is useful and no more harmful than T4 or says it's effects are no different to T4 [and hence, no more harmful!!].  I'd like to see the endo's research.

I've an appointment with the MP - now 6th May - and I've been told that he has already "written to the Department of Health to highlight your concerns.  I believe he has also written to you this week."  So, at least he's looking into it!

Heard nothing from Jeremy Hunt's dept but expect they have other things to keep them occupied, like junior doctors' strikes!

I'll let you know how the MP meeting goes.

[Tracer in reply to Tracer]

UPDATE 12th June:

I rec'd a letter from Jeremy Hunt's office stating all the usual things about the dangers of T3(!) and some interesting points about pricing, including......

1. "With regard to the price of liothyronine, in England, the selling prices of generic products are not controlled. Instead there is reliance on there being a competitive market to keep prices down, to deliver value for money for the NHS. However, as there appears to be only one supplier of this medicine, there is no competition in the market."

...

2. "Whilst the Department of Health has legislative provisions to intervene with regard to prices of medicines, any investigations would require detailed knowledge of the company’s business to be able to make a judgement as to whether the price is justified."

I sent a copy of this letter to my MP, together with my comments on all its content - including....

(1.) it was the NHS/MHRA that created the monopoly in the first place, by allowing Goldshield to change its name to MP/AmCo and then stop selling the branded drug (Tertroxin).

(2.)....well? then acquire the knowledge...!!!

My MP used my notes, T3 prices etc. from our meeting and the above commented letter to address his own enquiry to Mr Freeman, the Minister for Life Sciences, who is in the process of producing a general report on the pharmaceutical industry and its relationship with the NHS, and in particular the way in which new drugs are approved and supplied to patients. He will let me know what he hears from Mr F.

Last week, I received a copy of the latest TPAUK newsletter (tpauk.com) and it had some very relevant and useful information in it so I copied it to my MP [with Shelia's permission, of course] and told him how I feel it relates to 'our' query. One thing I found extremely interesting was that:

AMCo have countered that their ‘generic’ UK liothyronine is “in fact..unique and not interchangeable with other products in the market”. The MHRA, and British Generics, inform us that generics that are NOT interchangeable MUST HAVE A BRAND NAME. As previously mentioned, the brand Tertroxin was removed some time in 2007, resulting in the product being marketed as generic liothyronine instead. !!!!

It was also interesting that the The Times article, Friday 3rd June, on all this, actually mentions specifically T3, now costing the NHS £17m.

So, hopefully, things have come together and perhaps something will be done now about this scandal. (38 Degrees are running a petition, if you're interested (I am not connected to them in any way) : speakout.38degrees.org.uk/c... )

My MP has just come back to me to say Jeremy Hunt has now asked the Competition and Markets Authority to look urgently into the matter and he'll keep me informed.

We live in hope....!!

[SAMBS]

What a great letter Trace, very proud of you! sadly as I'm I'm inFrance, any letter/email from me letter would be binned. But I'm supporting you and the others all the way.

[Tracer in reply to SAMBS]

thank you!