Much improved on T3. Despite outrageous cost. Apparently!

The accumulation of understanding and researching then persuading health professionals has taken over ten years. Mostly thinking I was lazy, a bit stupid and a hypochondriac I have got to the best I have felt in years. I have been on prescription 20mgs T3 & reduced 75mgs levo for three months. The endo agrees the T3 has made dramatic improvement and recommends I stay on it. I was shocked to hear him say that he would have to write a letter to convince the GP to prescribe. That he could only do 28 day script as the GPs don't like to issue 3months worth due to Huge Eexpense ! And that I should think myself lucky and leave things as they are and hope the GP will continue to fill the prescription! And though some issues not compleatly sorted I should not push it!

My t4 is lower than usual and endo recommends raising to 100mgs levo but wants my TSH to come to 0.05 from 0.02 as is worried about my heart? No issues at the moment and blood pressure very good? So blood test to be done!

Still being made to feel I should put up with feeling less than well and just live with problems, that some how it is my fault and that the NHS are doing me a favour. (Not been out of work for 43 years! BTW). I take all supplements recommended on this site all helpful.

Seems the endos have to bow to the GPs who have no knowledge or understanding. Fingers crossed that they allow me continue. Nightmare to think if I hadn't pushed hard I would still be struggling with everyday life Sad to think so many women out there thinking they can't feel better and getting no help due to so called expense. Wonder how this cost compares to diabetes costs? Seems unfair to be penalised at any cost.

49 Replies

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  • Wow. That's a really interesting insight into how the system works, and it suggests some endos are beginning to believe that T3 works. Must be from the feedback where it is tried.

    So it's the cost of T3 which is a major issue as well as refusal to believe it helps in many quarters. Does anyone know how much it costs the NHS, compared to Levo, which is probably cheap as chips?

  • I don't know how much it costs the NHS but I paid for a private prescription last month -84 tablets of Liothyronine Sodium, 10mcg per capsule - £429! I nearly choked! I knew it was expensive but really!!!! Clemmie

  • Gosh. Expensive! I agree but at what cost without it. Just doing my job has been so much easier. I thought I was doing ok but with T3 my clarity of mind is so improved. Get things done in half the time. I still get tired but not fatigued as before. I hope you can get nhs to supply you soon.

  • Omg!!! I bought some from Greece 300 tabs around 30-40 pounds!!!!!

  • Currently

    liothyronine sodium 20 micrograms, net price 28-tab pack = £152.18

    Eek! :-o

  • That's how much endo said. I think for the improvement not prohibitive. However. Drug company monopoly should be sorted

  • There used to be a monopolies commission to prevent monopolies. I just googled for it and found

    "The Competition Commission closed on 1 April 2014. Its functions have transferred to the Competition and Markets Authority (CMA)"

    The real problem is 'big pharma'.

  • Well, that explains everything. So the NHS is as useless at procurement as it is at so much else.

    And everyone keeps asking for more money for it to waste.

  • When the money just keeps coming. The greedy companies know there is a cash cow to be milked. And the buyers seem quite nieve. I went from a commercial environment to public sector and could not believe how much of a pushover or how lazy and commercially unaware the people with the purse strings are. but the tax payers and NI payments keep providing.

  • Aspmama, 28 x Levothyroxine <£3. 28 x 20mcg Liothyronine £152.00.

  • And well done for succeeding in your long battle - not to mention staying working.

  • Thanks Aspmama. It has not been easy. Sheer will power kept me working. And pure necessity once divorced with small boy to raise. To be honest. I think it is lack of knowledge , and to be generous overworked GPs who feel they have done there bit. In fact I was diagnosed by my gynaecologist. Never entered GPs head. And of course I was just scraping into the normal range even though I was very symptomatic. The improvement on T3 could have made my life so much better very much earlier. Good luck to all struggling. Keep pushing you definitely deserve it

  • order T3 from Europe for pennies and stick 2 fingers to endos GPs and mean minded NHS who refuse to sort out the greedy profiteering by Mercury Pharma

  • I agree 100%, reallyfedup!

  • I wrote to my MP some while ago about the difference in cost of T3 here and in Europe (we're in the EU for God's sake). He passed it on to Jeremy Hunt and I received pages of gobbledygook and b....sh

  • I did the same after this last election and received a complacent response from a Minister.

  • Makes me even more sure they just want to make money and eventually privatise the NHS when it eventually runs out of money and breaks down

  • I don't think so, I think it's a massive inertia in the NHS (and the civil service) where there is no incentive for anyone to think of the taxpayer, or limit costs, or be efficient.... AGGGGHHH!!!

    I don't care if the NHS is privatised or state-owned or unionised to the nth degree so long as it works. Which it doesn't. They're all three simply varying kinds of selfishness and self-seeking, so far as I can see.

    (Steps down from podium exhausted by wrath.)

  • Well done Polaris for finding the energy to do this. It is a potential Daily Mail splash if only other examples can be found, and I am sure there are plenty if anyone looks.

  • Your heart will be fine - I don't know where they get those ideas from unless you are very frail and have a heart problem, of course. It is all down to costs these days and the only licenced T3 in the UK is Ampiderm I think its now called after about 5 name changes. at least. The cost to the NHS is astronomical of course but there is an alternative if your doctor suggests he cannot prescribe UK T3 (don't say anything to him of course as he might prescribe T3)

    If not, this is how you can get T3 prescribed on a named-patient basis:-

    thyroiduk.org.uk/tuk/treatm...

    On the link below click on Non-UK liothyronine.

    Email louise.warvill@thyroiduk.org.uk and ask for a copy of the Pulse Online article. In it you will see that he says some of us need a very low or suppressed TSH. Highlight this as it's by a past President of the BTA.

  • Thank you. I will keep for records incase they pull x

  • shaws,

    I hadn't realised you could apply the "named patient" basis to T3 but I guess you can apply it to any med.

    This might suit me as I have a willing GP but a local council CCG who have withdrawn my T3.

    At present my endo is prescibing direct through his trust but this means I have to drive a round trip of 130 miles just to collect my 3 month T3 prescription. It can't be faxed as has to be dispensed by his hospital pharmacy.

    My desperate plight shows the lengths I am prepared to go to. I must discuss this with my GP.

    Flower.

  • Can they not post it to you? Even if that required a pre-paid (by you) envelope (or whatever) - got to be less expensive and time-taking than 130 miles of driving! :-)

  • Do you mean post me the actual meds Rod..?

    I guess I could ask them. I need to sort this out asap or will run out of MercuryPharma meds and don't really want to switch to Tiromel.

    Thanx for the idea.

    Flower

  • That is what I was thinking! A Jiffy bag with label and stamp - shouldn't be beyond the wit of someone to pop medicine into bag and bag into postbox. But that is the simplistic view...

  • Our thyroid hormones are life-giving, without which we would eventually have myxedema coma and die. If levo doesn't work for us we are (in lots of our views) entitled to trial whatever thyroid hormones makes us well again.

    "Myxedema coma is a state of decompensated hypothyroidism. A person may have lab values identical to a "normal" hypothyroid state, but a stressful event (such as an infection, myocardial infarction or stroke) precipitates the myxedema coma state, usually in the elderly."

    (but not always in the elderly is my view)

  • I hope your GP is agreeable but it does mean that GP has to take full responsibility but if your Endo is prescribing at present I don't see a problem as the Endo started off your prescription and you cannot switch back to levo.

  • shaws...if I have my T3 prescribed by my GP on a "named patient basis" .... does this mean I have to pay..? /.?

    My father in law had meds withdrawn years ago but his GP continued to prescribe them even though they had been withdrawn and were NOT licenced any more. He had to pay the medicine cost..only about £11.00 a month ... not a lot compared to T3 at £152.00 ..a month..?./.?.?

    Flower

  • The so-called "named-patient" basis simply means that it is a medicine not licensed for the use for which it is being prescribed. In that sense, it has no implication for paying, or not paying. Every person who gets desiccated thyroid prescribed (in the UK) gets it on this basis.

    The next bit is whether the prescription is an NHS one - or not. As you know, some get desiccated thyroid prescribed on the NHS (a few), and another few get it privately prescribed.

  • So in view of T3 being licensed in UK... Is this option even possible Helvella..??

  • As I understand (and please put me right if I am wrong) any medicine which is prescribed outside its licence or is unlicensed falls within what is often called "named-patient basis".

    That would include both use of Mercury Pharma Liothyronine for something other than myxoedema/hypothyroidism and use of any other unlicensed liothyronine product in the world.

    In you specific case, I believe your GP could give you a private prescription for Liothyronine - and even stating Uni-Pharma (or any other make) if it helps. The GP could charge a fee for a private prescription.

    Your problem would be what to do with the prescription! It doesn't really get you very much further because you'll probably have to source it yourself - and having a prescription is unlikely to make much difference. (Some suppliers might care - many won't.) I have my doubts that any UK pharamcy will be able to get hold of Uni-Pharma. However the mere having a prescription might help in the eyes of other medics and in future.

  • ...[..However the mere having a prescription might help in the eyes of other medics and in future...]...

    I don't understand your line of thought. Rod...

    How would it help.. ? ? . Do you refer to my appeal with B & H CCG . ?

    Or are you meaning that any T3 other than MercuryPharma is unlicensed in UK .....so that would be my target?

    & if so......would my GP know WHAT to put on my prescription.. ? ?

    I don't think he would do it if it entailed hunting out supplies from online pharmacies like those who self medicate have to......

    Anyway....meanwhile I need to talk with endos NH hospital pharmacy to see if they will post as that would solve ALL problems........yay..! ! !

    Very confused ..... Flower

  • If someone reads your records, they would see "liothyronine" and assume that you were taking it as prescribed. (Doctors seem to have two ways of reading these things. Either you are taking as prescribed. Or you are "non-compliant". Being prescribed one make but taking another is unlikely to be an issue.)

    Therefore it would act as some sort of verification of your need. If you ever need to explain to a new doctor, or a new liothyronine product became available, you would not first have to say "Well, it isn't in my records but I have been self-medicating with liothyronine for five years." That sort of statement - despite your endo's actual view - could undermine your case in their eyes.

  • Understood ...thank you Rod.

    I am taking it as prescribed.

    However. ....my "..yay..! !. " of the previous post was not erroneously premeditated..

    After speaking with the hospital pharmacy this morning..(..and with a little gentle persuasion...! ! ! .and a slight indication that perhaps my endo might have kind of suggested this....god help me..!!. lol. ) ....they HAVE agreed to post all meds.

    I will probably put my appeal to CCG on the back burner for now as have a lot (health stuff) happening this year...

    You are a ..(..shining.?..) star Rod...lol

    Thank you.

    Flower

  • So pleased to read that! It seems such a simple thing. :-)

  • Meds received in post Rod.

    This in spite of hospital ringing to say I couldn't have script after all because I hadn't had a national health appointment yet.

    Luckily, I was so despondent I chose to ignore the situation for a few days whilst pondering what to do next.......

    This morning a surprise jiffy bag containing 3 months worth of T3 arrived so giving me a reprieve.....time to get organised.....

    Flower

  • Muriel, FT4 will be lower than when you were taking Levothyroxine only. High T4 for conversion to T3 isn't required when you take T3 direct, and it will also stimulate better conversion of the T4 you have.

    Increasing Levothyroxine dose will lower TSH, not raise it. Endo shouldn't be targetting TSH but should ensure doses are sufficient for good FT4 and FT3.

  • Hi Clutter

    TSH is the same as prior to going on T3 so seems the balance is good but endo suggested a little higher ? Will see how it pans out. M

  • I found liothyronine sodium 25 micrograms(cynomel), mexico net price 100-tab pack =14usd + 15 usd shipping.

    I don't understand why this difference in prices...

  • Darlin', are you joking? Have you been watching the news lately? Read this:

    Turing Pharmaceuticals made headlines last week after raising the price of its recently acquired Daraprim, a drug used primarily to treat the parasitic infection toxoplasmosis, from $13.50 to $750 per pill. Company founder and chief executive Martin Shkreli claimed the monumental price increase will support research into a new and improved drug for the disease, which can cause life-threatening illness in people with compromised immune systems and in babies born to women infected during pregnancy. “We needed to turn a profit on this drug,” he told Bloomberg last week (September 21). “We’re spending tens of millions of dollars to make a better version of Daraprim.”

    This medication is available in the developing world at just over $1 per pill. It is mostly used as an anti-malarial.

    Martin Shkreli is a 32 year old former hedge fund manager with a very sketchy life history. The drug company that he owns which bought the rights to produce this medicine is too small to even do research and development into anything at all. It's just a cash grab. There was enough negative reaction on the Interwebz and in the media that he had to back track and has announced that the increase in cost is not going to be as high. But the actual price per pill has so far not been announced.

    If you check the current CEO of Glaxo Smith-Kline, again there's a young guy who couldn't give a toss about the medical outcomes of patients taking the drugs manufactured by the company. Not only that, but several high ranking employees are being tried in China for bribery.

    This is the world of pharmaceuticals. They shunt their profits into offshore accounts. Shady business practices abound.

  • Yes, couldn't agree more. Pretty sure they don't launch any new drug these days without being certain that it'll cause side effects that need another 5 medications to get rid of...

    What is startling though is that the NHS appear to be powerless about being fleeced. Unipharma - pennies a pill. Mercury Pharma - more than a fiver a pill.

  • jazz, no doubt there are backhanders happening. And drug companies adjust prices to whatever the market will bear. Obviously given the huge price differences between liothyronine in Canada, U.S, U.k, Greece, Turkey.... the manufacturer considers U.K. to be a wealthy place. The majority of the medication is being paid for by the NHS and not private insurance. In Canada, a large percentage of patients have private insurance. (Hey, government is the biggest employer in this country and all these people have drug benefits which continue into retirement.) Here 100 tablets of 25 mcg Cytomel cost $168 Cdn (which considering the erosion of the value of the Canadian dollar this year..... I don't know what the current price is, but it's probably gone up.) Government drug benefits for people who are disabled or retired and have no other coverage does not pay for Cytomel.

  • We have plenty of pigs in this country, and plenty of room for more. No need to depend on Mercury Pharma if only the NHS developed some sense: "if it only had a brain".

  • Adin, Turkish and Greek T3 is <€3 for 100 x 25mcg over the counter. Mercury Pharma are the only licensed UK supplier and can charge whatever they like seemingly.

  • But if Mercury Pharma were supplying liothyronine as a branded medicine, called (for example) Tertroxin, then there would indeed be some price controls.

    The assumption of the people who wrote the rules seemed to be that if one company raised their price for a generic too high, another would compete.

    We have seen no evidence whatsoever that any other company has any interest in competing.

  • you're right gabkad, for example, where I live I can buy 100 tabs -Novothyral (T4+T3) 100+20mcg(german product) with 10eur/pack but in another country an identical product made by another company, cost triple. Why? ..)))

  • True Vindaloo. This is how capitalism (ha ha trickle down economics) has resulted in drug companies running amok with profiteering. My father was a pharmcology/toxicology professor but in the old days it wasn't big pharma funding research and there was some dignity in doing the research because it was done without prejudice. Like with the guys who found that VW diesel engines actually belch out orders of magnitude more pollution than claimed, the research scientists of the past would take drug companies to task at huge personal stress. But they had the freedom to do so. These days there are researchers who are contracted to not benefit financially from their discoveries but are being paid in offshore accounts. Sneaky and devious. When millions of dollars are at stake, objectivity and honesty flies out the window.

  • I hope you recover your strength and energy, Vindaloo.

    I have some doubts that even if we are correctly treated, after many years our adaptive reserve is gone and injuries sustained from inadequate metabolism and consequent degeneration compromise full recovery.

  • gabkad - I fear you're right.

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