I ask this because I'm aware that my T3 prescription is costing the NHS (i.e. us ) about the same per month as my rent, and I really don't feel comfortable with this, knowing that the actual cost of T3 elsewhere in the EU is a small fraction of what my GP has to pay. I don't want to start a general rant about the NHS. Really. DON'T. I love the NHS they saved my life. Please answer the question as set out in the header, because if I get real feedback I'll go on ( because I can now I'm on T3 ) and try my hardest to change the buying policy and end the ridiculous monopoly which I feel contributes to the scandal of hypothroid treatment in the UK.
Have you ever been refused T3 by your NHS GP / ... - Thyroid UK
Have you ever been refused T3 by your NHS GP / Endo and felt it was a decision based on cost ?
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mickstability
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I'm told the CCG has prohibited prescribing of T3 because of lack of random control trials & published evidence as to benefits.
Two years ago I was prescribed T3 via endo & GP prior to RAI.
If endos recommend T3 the scrip will have to be fulfilled by the hospital pharmacy. GP practice won't fulfill repeat prescriptions.
I'm damn sure its cost related. GP looked shocked when I told him that NHS are paying £103 for 28/30 tablets which are available for a few Euros OTC in France, Greece, Cyprus & Turkey.
that's your CCG., your gp, is that practice policy? Damn. This is going to be harder than I thought.
OK. My gp is happy to pop me T3 on demand - I'm a nice average white guy and he came to my wedding. ( not strictly true, it took 5 bloody years and 5 endos - it's just that now he tends to listen )That doesn't give me much of a cohort to work with.
If your CCG prohibits T3 on those grounds now, they'll hide behind any grounds while the cost stays high. Thanks for being the first of many hundreds to respond, Clutter!
I made it very clear to the nice shiny new GP that I thought the CCG line about RCT & EBM was so much bovine splatterance, citing JFK treatment 50 years ago and other published research ignored by RCP & Soc. Endocrinoligists.
Nothing will convince me its not cost related.
I think that cost of T3 in the UK is the main reason that doctors are reluctant to prescribe it. I managed to get T3 from my Endo after 5yrs of being made to think that my symptoms are mainly down to a difficult type of depression. Then I read on this site that when adding T3 it has to be raised gradually until the symptoms eventually subside completely and remembered that I had asked for T3 when I first saw the Endo 5yrs earlier and after a few months trial of 20mcg a day and not feeling any better, he had taken me off them instead of raising the dose. After reading about what should happen while taking T3, I rang up the hospital and asked for a second opinion after not feeling any better after seeing the Endo for over 5yrs and managed to bring forward my apptmnt and after seeing someone else at the hospital and discussing how I felt, I saw the same Endo and asked him if he would retry the T3 again as he had not raised the dose from 10mcg twice a day, which he denied and said he had put it up but I still had the last bottle from 5yrs earlier which still had half the T3 tabs inside and the dose typed on the label so I had the proof he hadn't tried putting the dose up.
After 14mths I have managed to raise the dose from 30mcg, which he started me on, only when he realised how determined I was to try T3 again and now I take 40mcg and still not feeling as well as I want to so its an ongoing battle and my GP doesn't want to increase my dose either without agreement from the Endo so I have to remain unwell, although sure T3 is helping me mentally, even if I still suffer from fatigue and weekness everyday. My basal temp to me proves that I have insufficient thyroid hormone and I can't see the Endo again until the end of March. Why don't doctors do all the tests they should do instead of going solely by TSH results, which have been proved not to be reliable in diagnosing thyroid deficiency? We have to ask for any tests for vitamins and minerals to be done, which have to be optimal in thyroid patients and still don't get treatment unless very deficient. They would rather keep us on anti depressents, as I have been continually for the past 17yrs and tried so many of them, all of which don't ever make me well. Its a total disgrace as T3 is used as an antidepressant in the whole of Derbyshire and I have informed my GP of this and sent her info from a link on this site stating that. GPs get paid more money for every patient they put on anti depressants, saving the cost of T3 which would do a better job for many of us who don't get well on the low doses of hormone we are currently given. One size fits all is still the mentality of the NHS and we are all chemically different and need different treatment for thyroid illness, depending on the type and the reason for it. Doctors don't seem to be bothered to find out or to care. Saving costs is all that matters even if it means keeping so many of us ill in the process.
I was in Derbyshire for 10 yrs after TT and never saw an endo - I can't even remember having a blood test in all that time, just repeat scripts for T4. Can't check this is gp lost my notes - Bloody Heanor!
Mick, I know Heanor very well, Congratulations if you managed to escape!
ourida55, T3 has been used for depression for years, mainly as an adjunct. A couple of studies that might be useful to show your doc. I realize it is a battle and the cost factor outweighs the fact that it actually works. Anyway, first study.
Minerva Endocrinol. 2013 Dec;38(4):365-77.
Hypothyroidism and depression: salient aspects of pathogenesis and management.
Duntas LH, Maillis A. "Thyroxine treatment in patients older than 65 years does not improve cognition. In contrast, T3 administration is the therapy of choice in patients with resistance to antidepressive drugs, and especially to SSIR. Genetic variants of thyroid hormone transporters or of deiodinases I and II may predispose to depression and, therefore, a personalized approach should be implemented." ncbi.nlm.nih.gov/pubmed/242...
Second study.
J Affect Disord. 2009 Aug;116(3):222-6. doi: 10.1016/j.jad.2008.12.010. Epub 2009 Feb 11.
The use of triiodothyronine as an augmentation agent in treatment-resistant bipolar II and bipolar disorder NOS. Kelly T, Lieberman DZ
RESULTS:
Patients had been unsuccessfully treated with an average of 14 other medications before starting T3. At an average dose of 90.4 mcg (range 13 mcg-188 mcg) the medication was well tolerated. None of the patients experienced a switch into hypomania, and only 16 discontinued due to side effects. Improvement was experienced by 84%, and 33% experienced full remission.
CONCLUSIONS:
A high percentage of bipolar II and bipolar NOS patients with treatment resistant depression improved on T3. Despite the use of higher than usual doses in many of the patients, the medication was well tolerated. Augmentation with supraphysiologic doses of T3 should be considered in cases of treatment resistant bipolar depression.
ncbi.nlm.nih.gov/pubmed/192...
The problem that freaks doctors out is that by the time a person gets enough T3 the TSH is suppressed. This is what they are referring to with "supraphysiologic doses". If you look at the dosing range it is not that strange to many on this forum. Paul Robinson gives a clear overview of what kind of test results you can expect when you're on T3 and why doctors freak out. PR
My endo prescribed T3 only after 9 months of combo trials. My GP has continued to prescribe on endo advice. I have now been allowed to ask for named patient basis T3 due to batch difficulties.
Result pharmacy has found Sanofi Aventis cynomel @ £13 per 30 x 25 mcg ,through their IDIS supplier, as opposed to NHS Amdipharm Mercury 28x 20 mcg @ £102 . Seeing GP for blood test results and to finalise named patient basis prescription, when he next has an available appt. Meanwhile am using Mexican cynomel 300 x 25 mcg @ just under £40 , ie 36.6 x cheaper than NHS. Have written to MP and sent copies to Health Dept supporting Westminster debate 17th Dec 2013 and pointing out price crime!
Thyroid UK, named patient basis doc was useful to wave at pharmacy - many thanks Thyroid UK again
This is brilliant Sarah - I'll try this with my GP as well!
Hi again, see my post yesterday - pharmacy with IDIS account is Lloyds - good luck!
A very large number of pharmacies have accounts with IDIS - if one pharmacy can do it, almost any other one could also do so. But full marks all round for carrying it through.
This looks like amazing information. Will pass it on to my daughter. Never heard of named patient status. What is it?
See here 
plm1
thyroiduk.org.uk/tuk/treatm... I think I should have said "named patient basis"
For some reason the MHRA seem to say "so-called named patient basis". Not sure what else it should be called!
brilliant SArah, I am going to try to make an appointment today wont be able to see a gp for about two weeks. thats normal here
I'm not on T3 but do suspect I'm not converting well so this could well become my problem in the future. However I have been incensed to read that T3 can be sourced elsewhere at a fraction of the cost to the NHS so am concerned about that. BUT going back about 45 years my late husband got a grant from The Wellcome Trust to study for his PhD about TRH. I heard at that time that the reason for some drugs being expensive was that the drug companies contributed to scientific research so commendable. There were some restraints then and I can't remember exactly but for new drugs entering the system they were allowed to charge significantly over the production cost for a decreed time (you could take that as a research cost). I have no idea whether this is still the case or not but it could explain why Levo is much cheaper ie its been around longer. Neither have I any idea as to whether this 'charge' can only be levied in the country of origin of the medication but I do know that my husband worked with people around the world, mostly USA and Europe and briefly in South Africa but have no idea whether other countries have similar rulings. I can appreciate the cost aspect more if this in still the case.
I take your point about research funding, but T3 has been around for 50 years or more ( I found an article about its use for schizophrenia in 1960 ) so I think this is just a case of the NHS allowing Amdipharm Mercury to monopolise the market, against the interests of those of us who have to use it.
If no other company applies for product authorisation (licensing), then none will be issued. Any other company could decide to import T3 and apply. They haven't.
(Obviously, there will be legal fences to jump. I imagine that Grossman would not be able to distribute their Cynomel as I think that Sanofi own that brand name in Europe. Nor have they got a UK arm, to the best of my knowledge, and I think that might also be required. Sanofi do operate here, so might also be in a better position to enter the market.)
Ironically, AMCO's price rises might well have provided an opportunity for others to supply the market.
It might make sense to you and to me for the NHS (or its medicine acquisition services) to solicit companies to distribute here. At present, they cannot.
I also believe that we could do with a pre-authorisation mechanism whereby products such as Sanofi Cynomel and Henning Thybon can be brought into the market without full licensing at times of shortage. Some sort of "they are fully licensed in France/Germany/wherever so that's OK" mechanism.
European medicine licenses might actually allow this market to open up.
So I should solicit my MEP to help in this matter, Rod? Might be a shock to him to be asked to do something useful.
That might well be a good idea. Things are already happening in this area - I think the stumbling block was the idea that a big company could push a small country such as Latvia to issue a license - and that would then have to be honoured across all of the EU. Clearly ripe for exploitation!
I suggest the "contingency pre-authorisation" should be put to any MPs as well.
Yes take your point that others would need to apply but judging from the messes the current suppliers make of supplying Levo then it doesn't bide well for there being many interested, capable firms around. I can't see many firms in the UK wanting to test the waters with T3 or NDT when the NHS don't accept it as a recognised treatment. We seem to be in a no win situation. Recently I went to see an Endo and asked if I could have my FT3 tested and he says no as it doesn't do anything then I find he is working on producing a combined T3/4 pill. How two faced can you get. Everyone is out to line their pockets with no thought being given to those suffering.
If I had to guess who might apply, I think I'd go for one of the following:
Sanofi who produce their Cynomel for France - who also own Henning who produce Thybon for Germany.
Teofarma from Italy who produce TiTre because they already supply Ireland (at least they did - is that still the case?).
Pfizer/King who produce the USA Cytomel because it is clearly the worldwide brand leader and Pfizer are already a huge player in the UK.
Mylan because they already supply the UK market in various ways with other products and compete with Pfizer.
Teva because they really would not mind getting back into thyroid medicine in their own right and not only as another distributor of AMCO products. Might as well give AMCO a bloody nose in several directions at the same time - if they have a levothyroxine product ready to go and don't need AMCO any more.
There are 31 triiodothyronine producers listed in China alone - one has a choice of 25kg or 500kg order quantities - I wonder where our suppliers are sourcing the raw ingredients to compound their pills?
I thought it was Sandoz in Austria - but I could be entirely wrong on that. When Mercury Pharma liothyronine became unavailable last year, I certainly wondered if the other European manufacturers of tablets might have also be affected, as they would be if they all sourced from the same supplier and it was a supplier issue. But it was only Mercury Pharma. At the time something seemed to suggest to me that the main European liothyronine tablet producers all use Sandoz raw liothyronine powder - including Mercury Pharma.
We still don't know why there was a problem. Did someone drop that month's supply on the floor? Or mess up the mixture and end up having to make up another batch.
Regarding Chinese suppliers...
Assume a 25mcg dose tablet.
There are 40,000 doses in one gram
So there are 4,000,000 doses in one kg
and 100,000,000 doses in 25 kg.
Which means that 273,973 people can have one tablet a day for a year.
In England in 2012, I think there were only around 70,000 or so prescriptions for 20mcg liothyronine in the whole year. (That is, if I have looked up and correctly interpreted the data.)
Those are beyond-industrial quantities! I can only imagine that quite a lot goes to veterinary uses - otherwise it would be very difficult to guess where it all goes!
"but it could explain why Levo is much cheaper ie its been around longer" actually this flies in the face of -- NDT natural desiccated thyroid (armour for one)--has been around way longer than Levo and it, and T3 cost the earth & both work for symptoms and well being--so who benefits from keeping the costs up high and under treating hypothyroid, certainly not the nhs, as they have to pay for all our meds for treating the symptoms of hypo, as in hypertension meds, cholesterol lowering meds, skin creams, etc.etc. and still have un-well patients coming to surgeries more then needed, penny wise pound foolish id say...
I think there are many more hypothyroid people who don't make the connection between their general health state and their less than euthyroid state - I put up with a progressive decline for years : 'we're none of us getting any younger' said my gp - and I was being 'treated' regularly, so what's it like for the thousands who complain of hypo symptoms, have a TFT and are told 'It's normal, no treatment necessary'.
Some USA people suggest they can get desiccated thyroid cheaper than their equivalent levothyroxine dose would be. (Yes - I know you cannot directly convert, etc. )
We in the UK have see extraordinarily low levothyroxine prices. In the USA the advertising budget for their brand leader Synthroid probably dwarfs our entire levothyroxine budget! No wonder the prices are so high.
Also, USA prices of liothyronine seem to be around the same point that AMCO have now reached with their product. I have not noticed another country with anywhere near such high prices as here and there. (No - I don't have an encyclopaedia of liothyronine prices, but of those I have seen.)
Rod
My GP told me it was almost certainly cost even if that wasn't the official reason. He was happy to prescribe it, especially as I had been well on it before, but was not allowed. I buy mine for about £15 a month for a reasonable dose.
Sarah's suggestion is probably the best bet. It would probably cost them around £50 a month still but that's better than £400 a month!
Sounds like you have a good GP
Carolyn x
Yes my GP's a gem, but the breakthrough for me was going to a private endo who hit the roof and got a proper regime going and put a stop to the hyper/hypo cycle that I'd been stuck in - she gave my GP the confidence to follow the symptoms. He'll retire one day, however, so then who knows?
I recently asked my GP for a T3 count and he did specifically ask the lab but when I went back for my results he told me the lab had refused but that I shouldn't worry as my TSH is ok. It never occurred to me that there was a cost consideration.
I have been put on fluoxetine to try and help the head and facial sweats and my other symptoms have also remained the same (the sweating gets me down the most because I can't hide it and get completely drenched from the neck up).
I've decided to ask him to prescribe liothyronine anyway to see if it helps, but as fluoxetine costs less than a pound and liothyronine costs nearly £70 I'm now not hopeful I'll get it.
This refusal of labs to test free T3 if TSH is in range is a worry, it's being remarked upon a lot recently. Since changing to T3 I've been able to drop four items from my repeat prescription, so you could try arguing that similar savings could be made for you - I too suffered profuse sweats for years whilst on T4 - these have virtually disappeared since being on T3.
My T3 prescription was stopped just before Christmas last year. The GP said that it was because I risked a heart problem and he felt safer with my not taking anything at all and just gaining a bit of weight and being tired. (He's obviously never been hypo.!)
I consider that this was more of a cost consideration as I am on 120mcg/day. I now source privately but am still trying to convince the GP to reinstate my prescription.
Penny - your reply led me to your post when this happened and the excellent advice Nobodysdriving gave at that time, which I hadn't seen, so many thanks !
When I questioned my G.P. on the price of medication (Levo and Armour). I had found Levo for sale on the net- $85 a box) He told me that one box costs the N.H.S £1.20. He did not have on file the cost of Armour because he is not allowed to prescribe it.
I found Nutri-Meds.com selling Armour (90 capsules at 130gms for under £30 inc postage)
I hope this is useful.
yes, I was told in Spilsby that we dont test for T3 here, then when I managed to get them to test for it, We dont treat for T3 here.
I am going to try again as I feel so depressed and they lowered my thyroxine again two months ago. I go from being over medicated to under medicated about every 6 months. I have been so down that I have stu[idly given up two days work. I cant afford it! broke now and very worried
I had this discussion with my doctor this morning. I've only just managed to get my hands on it and she wants to take it off me saying if there's no significant weightloss then they'll stop it. That's fair enough but what are they classing as significant and in what time frame? I'm on my 10th day I've lost around 2.5lbs which I'm very happy at seeing as how i seem to remain static despite an incredible amount of exercise. Better still i lessened the exercise and the weight came off. It's £102 well yes that's a lot but so is a GPs salary so what's strangling the NHS more? I love the NHS too of course I do but should I be afraid to use it - I think not considering I pay a hefty amount into it every month. I'm really quite annoyed that they want to pull it back off me, only gave me 14 tablets to try and are humming over the weightloss amount - last I heard 2lbs per week is safe and if I lost anymore then I'd be asking why I was losing it so quickly, wouldn't that be a bigger concern? It seems I'm damned if I do and damned if I don't because I can't be more active than I am, I can't try every crazy food combination hoping something somewhere works. I can't move anymore without giving up my job or eat any less and month on month i get told to get my weight down because I'm at risk of heart disease or diabetes! Don't moan about it if you're going to yell about the cost of trying to sort it. I don't drink, don't smoke and really £102 per month is nothing compared to what they will have to shell out if I do end up getting heart disease, diabetes or anything else. Makes you wonder why you bother at all.
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