Crisis of conscience

I cost my GP practice £516.40 every 28days for my T3 alone. Do I source my own and relieve them of their financial burden or wait until they, most probably inevitably, call it a day? My endo told them to supply me when they contacted her questioning the script and they duly did, the fact that they contacted her makes me uneasy. Thoughts please. Thank you.

45 Replies

  • MissLillyKisses,

    What has the price of the medicine prescribed to do with patients? Would you be able to access cheap cancer drugs if you needed them to save the NHS £300,000 a year? Would you opt for cheaper surgery in a third world country because the cost of NHS surgery was expensive?

  • Good points Clutter, thank you. I think I just needed to get it off my chest but I will be happy to source if they do pull the plug. Thanks to this forum I have that lifeline of information and support.

  • far better to involve your MP and get very awkward questions asked as to why the NHS has done nothing to sort out the price gouging by mercury pharma /ambhipharm it is they who increased the price 6000 times of the price it is in europe

  • I suggest the ratio is closer to 100:1 than 6000:1 - but perhaps you have more information?

  • But why is it so much more expensive than elsewhere? Is it just this country being targeted with these high prices?

  • Quite simply, the company that offers it in the UK has raised their price - exploiting a loophole that applies once they de-branded the product in the UK (it used to be sold as branded Tertroxin).

    Liothyronine always appeared to me as expensive in the USA, but when Mercury Pharma (Concordia International) prices shot up, the USA products look almost a bargain! (Not really, compared against others around the world.)

    Yes, so far as I can tell, it is this one company targetting the UK only. (Mind, I don't know whether they still supply other markets. Tertroxin branding seems to be part of Aspen around the world, but have not been able to fathom out whether the product is still supplied by MP to Aspen, or Aspen now make it for themselves. Also, no idea about Ireland, Channel Islands, etc.)

  • I am on half term this week rfu123, I will do just that, thank you.

  • if T3 is now £516 for 28 day supply then you may be right and its 100 times (but i had read they had inc the price by 6000 must go and question that statement )

    Even 100 times the price t3 is in europe is still price gouging which NHS should have sorted when the debacle with pfizer was dealt with

    Its a prime example of whats wrong in the NHS along with crazy free treatment for health tourists other country would tolerate it

  • I take 56 pills every 28 days.

  • Most certainly it is an obscene practice to gouge the UK market like that.

    When presenting the argument that it is so over-priced, accuracy is important. As soon as we make an exaggerated claim, our case gets weakened.

  • no matter what you take ...the price of t3 in the uk is a disgrace and its blocking those who desperately need T3 from getting it and getting well which is no good for the patients or the country

  • Exactly. Thank you.

  • Your GP can prescribe an alternative T3 if he makes the prescription on a 'named-patient' basis. You are not responsible for the price of licenced T3. That is down to the British Thyroid Association who haven't bothered and I think it's because they mislead on the benefit of T3 and have now had a reason to withdraw it from many patients.

    It's not your fault that the NHS is being bled by the pharmaceutical company.

    It's a pity the pharma company supplying T3 don't have a crisis of conscience.

  • Thank you shaws. It has played on my mind for quite a while, I needed a new perspective on it.

  • Hi shaws . I am really showing my lack of knowledge here....but is it the British Thyroid Association that have caused the increase in the price of T3....and in what way did they mislead on the benefit of T3 which has resulted in it being withdrawn/ not now prescribed ? Sorry for being such a dumbo. 🤔🤔

  • No it was the supplier of the company (which has been been bought over several times by different pharma companies and T3 increased from about £20 per month (someone will correct me if I'm wrong) to about £200.

    The pharmaceutical company is bleeding the NHS and doing us, the patient, a dis-service when T3 is life-giving for those whom levo doesn't work. It was the perfect excuse for the BTA to withdraw T3 altogether. I read in their old guidelines (you now have to be a member I believe to link into their updated website) that T3 wasn't encouraged and they gave some nonsensical statement about why.

  • Thank you for explaining this shaws . This is a disgraceful situation . So frustrating that the pharmaceutical company is actually allowed to get away with this - draining the NHS and in effect holding a lot of people's health to ransom. !!!!

  • It is just a disgrace that the BTA are using this as an excuse to withdraw the medication.

    What would be the 'alternative' t3 you mention?

    My pharmacist has made me feel 'guilty' about asking for t3...even though he has been supplying me for the last 7 years. He won't order it in, before getting the prescription, as he used to do, to have it there for me when he got the prescription. And, having told him the brand he changed to a couple of months ago (Cheaper, presumably) was agreeing with me better, he has now reverted to some 'generic' brand, some of which has a 'short' date??? So where/why is he sourcing 'old' medication from?? NO doubt cheaper!!

    Do our Dr's not have some 'legal' commitment to their patients? Is not 'first do no harm' part of the oath they take? How do they get away with stopping medication for patients when it is doing them good? In my opinion it amounts to neglect. Especially as HypoT is a potentially fatal condition. What other potentially fatal condition/illness would be treated with such little regard?

    I know I am one of the lucky ones, still getting t3, when others aren't, and I am grateful for that, but the fact that I am now being given 'short date' meds, (when I know t3 is not something the pharmacist stocks) is worrying. How long before they say they can't get it? Unnecessary extra stress...I already struggle with 'adrenal fatigue', and could do without.

    I'm sure MissLillysKisses, like the rest of us have not asked for the health problems we have, they are not self inflicted. We should not be made to feel 'guilty'.

  • The regulations by the BTA have always stated levothyroxine is best and have made False Statements about NDT (in use safely since 1892 with no blood tests and diagnosed upon symptoms alone). Doctors who practiced before the blood tests and levo were introduced if they didn't toe the line were reprimanded or lost their licences. BTA also didn't reckon T3 as a replacement hormone and, again, I doubt they stated the truth about its function or are completely unaware.

    The BTA never had the courtesy to respond to Dr Lowe before his death, despite three yearly reminders. Of course, I doubt they could defend their stance.

    This is from TUK:-

    Many thousands are fine on levo and wont be searching the internet. It is mainly those who have clinical symptoms but TSH not high enough or still having serious problems on levo, either on too low a dose or it's incompatible for some people.

  • I am aware of a lot of the problems these competent Dr's have faced. I'm often found 'ranting' about the mistreatment of these Dr's. And it beggars belief that they are held up for treating their patients correctly...or at least trying! They are actually looking, listening and seeing and hearing, treating causes not just symptoms. Especially when the majority are quite happy to send patients away with sub-standard treatment, and they get away with it.

    I also think that modern 'tick box' medicine has helped put the NHS in crisis - all this sticking plaster practice is false economies! Time and money wasting. Sorry - ranting again!

    And you are right, the people on here are the ones who are struggling and, generally, have been struggling for a while. I have struggled for years, and only found this forum recently. And I have searched for information for over 30 years, and tried to keep up to date with what was/is going on. I'm sure there are many more out there who have yet to find this help.

    You only have to look at the number of people on here to see that there is a major problem. We are just the tip of the iceberg. Which is only going to grow with the growing lack of care.

  • Many suicides might well have been due to undiagnosed/undertreated hypo. These are just two past posts. The first about Lorraine Cleaver took her case to the Scottish Parliament but the two women who were with her couldn't stand the strain. TUK also were present. It wasn't successful but at least it brought it to the forefront:

  • There was something a long time ago, can't remember where I heard or read it, that most of the people committed to asylums, in the Victorian age, had little more wrong with them than being HypoT but by the time it was realised these people were all to institutionalised. And Depression is something that the Dr like to tell us we are! So I am not surprised if it is accountable for many suicides.

    I think I watched a clip a while ago at the Scottish Parliament. It is keeping things in the foreground now...

  • Before the introduction of NDT, people died a horrible death. Myxedema coma for one. Having no thyroid replacements would have had a very serious affect on people mentally. Some are committed today because their TSH doesn't 'fit' the criteria for diagnosis.

  • I really do not doubt it. Scandalous!!

  • Thank you for your comments. Your pharmacist is a disgrace UPower, could you change. I have had really good experiences with Boots who sourced a supply for me when there was a factory production problem a while back. My local Sainsbury's chemist has always been good too but they have been taken over by Lloyd's. So far, so good. If a pharmacist questioned me I would ask him what business it was of his to question my script. He is not my endocrinologist or GP. I am staggered by this to be honest. My best wishes to you.

  • Up till recently the pharmacist has been really good, it is only since this hike in prices that I'm seeing these problems. If it continues I will be talking to him and telling him that I think he is being unfair.

  • The poor purchasing policy of the NHS is not your responsibility. We all pay our taxes so that those that need them can get the meds that make them well. Hoever, it might be worth having a backup supply just in case.

  • Thank you AotN, good idea!

  • If I gave your doctor (if he was hypothyroid) the choice of either T4 or T3 - not both. What would he accept?

    Do you think he'd jump at the chance of T4 - the inactive hormone. or

    T3 - the active hormone required in the billions of cells in our body, particularly brain. It runs the whole of our metabolism. If insufficient we have very unpleasant clinical symptoms.

    If someone is on levothyroxine it has to be at an optimum. For myself, the very thought of levothyroxine turns my blood cold as my experience is not to be wished on anyone. I am mindful, however, that many are fine on it but we obviously have very different bodies.

  • I'm new to this forum after being diagnosed 14 years with hypothyroidism ago after my son was born . I have constantly been backwards & forwards to the drs as have never felt right & have only being told none of my issues have anything to do with my thyroid. I hit rock bottom after entering menopause early and decided to look at alternatives & have just started consultation with dr Peatfield. Please excuse the long preamble but your fear of the cost of t3 resonated with me . What u & the health practise must think ab is how much u wd cost the practise if u weren't taking the t3. You would be going backwards & forwards with the different issues from not having the right medication as I have know realised has happened to me. Which would cost a lot more.

    I am just on the road to taking control of my 'illness' & dr Peatfield was the first dr I have spoken to in 10 years that doesn't make me feel that all the other issues were in my head.

    As I've said please excuse my long ramble This forum has helped me to plan my way forward.

  • Thank you Scruffymutt, my best wishes to you.

  • Dr P is a saint! Seeing him was the best thing I ever did, and recently took my 22yr old son to see him too. Good luck.

  • That is really good to hear , I am really hopeful that I may get back some sort of normality rather than just getting by.

  • He certainly helped me, when no one else would. Had the best few years of health once got the balance right. Got to pot a bit at the mo, but back in right direction, I hope. I'm sure Dr P will be great for you. I know my son said he felt so much better, just for seeing him, because he listens, and gives reasons, and solutions. All the best.

  • MissLillyskisses, I really do hope you will use your crisis of conscience to contact your MP as rfu suggests. Or maybe start making some enquiries of the NHS: who exactly is responsible for maximising Big Pharma's profits? I've been watching the programmes on all the cancelled operations at St Mary's Hospital, and if the NHS didn't waste these ridiculous amounts of money on drugs, they'd be able to afford more beds.

    (But that certainly doesn't mean I'm suggesting you stop taking them from your GP - I imagine your tablets are a drop in the ocean of NHS wastage.)

  • I will be contacting my MP this week dina7, thank you for your comments.

  • Up to you but think of the tablet YOU don't have to take such as anti-depressants anti-infammetry etc. As the T3 stops depression etc.

  • Very true Glynisrose. Thank you for your comments.

  • I feel exactly the same, very tempted to pay myself for T3 rather than burden the NHS at this time, but since I'm borrowing from others to pay for car repairs that seems a little ridiculous.

  • We can only pray for a turnaround in policy and fair play, my best wishes to you thyr01d.

  • Hi, I just wanted to add that the prescription costs do not effect your gp practice directly. I believe that the UK system is the same as here in northern Ireland in the each practice is allocated a prescribing budget each year. All prescriptions when dispensed come out of this budget. Many practice's overspend and many underspend. Other than iniatives to bring down or allow more cost effective prescribing in individual practices overall there is no effect on the practice either way. If your t3 is making you well and is effective you will not be requiring other drugs which have a cost or require hospital attendances which have an even bigger cost to the NHS. So continue to take your t3 guilt free as you need it as and when it is no longer available at current trend in the NHS then you can consider an alternative. I personally take ndt from thialand at what I feel is a small cost for my health. I would also add I'm a practice manager who has worked in a gp surgery for 22 years. My hope is to educate from within.

  • Thank you mtcorr, interesting comments.

  • We need to pressurise the NHS to gets its purchasing in order, not penalise the individual.

    And you never know when the supply will dry up - my ongoing fear with my self-sourced NDT.

  • It is truly shocking the amount of money these drug companies charge. T3 in Greece and Mexico is dirt cheap. Though we do pay 20 to 40% tax from our salaries and from that, non of us should feel like we are a financial burden on the NHS.

  • Thank you Matt8394Alien.

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