After jumping through a few hoops and finding a pharmacist at Boots that was interested in the T3 issue I have a workaround for the Mercury T3 issue.
My endocrinologist put me on T3. It helped. Levothyroxine didn't work for me. The Mercury pharmacy T3 was an improvement, but I was started on 10mcg per day and was moved gradually to 60mcy per day. The cost was extortionate. I was still tired and not losing weight.
My sister in America was on a different drug and getting a good result. I noticed that the Pfizer T3 was less expensive in America. Began to do research on getting an alternate T3 here in the UK.
The change was actually very simple. It requires a hand written prescription for generic levothyroxine at the 25mcg dose. The pharmacist then writes a request to the health board to use the alternate highlighting the cost savings. Once approved you're all set.
I am now on the German T3 from Sandoz. The cost is about €20 for 30 tablets. (There are 5 mcg tablets available as well, if needed). They are larger firmer scored tablets. Easy to break even without a pill cutter. Most importantly I feel better and I'm losing weight. My energy is better and unlike the Mercury tablets this seems to be a more sustained release formula so I no longer have peaks and troughs of energy.
I have been on the Sandoz for 3 months. I have lost a stone and had new blood tests drawn yesterday.
If anyone is interested in this perhaps their pharmacist can talk to mine and get the ball roling. My pharmacist had to assist the GP with writing the prescription in a way that resulted in the Sandoz prescription as via the automated system the GP can only order the Mercury version. It needs to be handwritten each time the prescription is renewed.
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That sounds amazing. Could you private message me the name and details thanks. Does this mean you are paying or the GP is? Could you get it same cost on a private prescription? Wondered who paid as presumably you would pay in pounds to boots?
Hi my boots is not interested but have found a independent chemist but am I right in thinking I need a named patient prescription from my endocrinologist naming Sandoz
GPs have always been able to write prescriptions on a named patient basis to prescribe medications which aren't licensed for UK use. I'm glad yours has found a way to prescribe you T3 without paying the extortionate price for Mercury Pharma.
Yes, they have always had the ability, but it's still a struggle to get them to do it. This seems particularly to be the case with Liothyronine as they must make a handwritten prescription and can't see the alternative options in their computer. My GP had to get info from the pharmacist at Boots to sort it out. GPs are unaware that a lower cost and possibly more effective choice is available. Instead they read the NHS advice not to prescribe due to the high cost and don't research further. You need to take info with you to build your case. The fact that the dosage is 25mcg rather than 20mcg per tablet seems to confuse the dosing info they have to hand as well.
There seems to be various doses available in various countries. I was originally requesting 25mcg Pfizer as it appeared to be available. The original named patient prescription was for the Pfizer product. Sandoz 25mcg was substituted. No idea why. Not keen to query it in case the Pfizer gets substituted when I'm having a good response to the Sandoz product.
Although cost is an issue, the Sandoz is simoly a much better product as well! There is no comparison to the way I feel. Energy better, weight loss, sleeping better. Hair is fuller, eyebrows growing back. I've lost a stone in 3 months since changing to Sandoz.
I am so pleased to hear about how much better you feel it's sounds like you are getting g back to your normal self it must be such a relief !!! 😀 I like you did previously feel absolutely dreadful on Levo it really doesn't suit me my gp has reduced my dose from 50 mcg down to 25mg now she wants me to have a few days off it altogether !!! I am desperate to try an alternative what part of the country do you live in ? Can you private message me which pharmacy so I can go bk to the gp and try and get the wheels in motion 😀 Kind Regards Kazbe x
So if i were to ask my Doctor to prescribe T3 or Armour - where would i advise him to 'look up the medication' so he can prescribe it on a 'named basis'. I went to see a private doctor who did not know what i was talking about and when he tried to look up the medication in his 'NHS bible' he said 'if it is not there I cannot prescribe it'. I did not know what to answer to that? I want to appear knowledgable next time - so where would i refer him? Where could he look it up? Is there a definitive handout I could take with me. I felt so stupid last time?
Liothyronine is listed in the British Natural Formulary but many CCGs insist that a NHS endocrinologist recommends its use before a GP prescribes it.
NDT isn't licensed for UK use so it isn't in the BNF which may be what your GP meant by "NHS bible". NDT is rarely prescribed on the NHS. Most members using NDT have private prescriptions or buy online and self medicate.
Legally we are entitled to import thyroid replacement for our own use or that of our household.
Medically we are entitled to self medicate. If your doctor doesn't approve s/he can ask you to stop and can ultimately discharge a patient who doesn't follow his/her treatment plan.
Perhaps Thyroid UK could write giving this information to all the CCG's as they are the ones trying to stop T3 being prescribed. They can then pass it on to the doctors in their area.
Could you also please PM me with your pharmacist so I can ask my surgery's pharmacist to speak to them. My blood tests show I need T3 so they are not actually refusing me (at the moment) but they have reduced it.
Good work!
My GP gives me a private prescription (for free) which I send to a pharmacy in Germany. They then send me Henning Thybon, which costs me €30 for 100 x 20mcg tablets.
Not sure this would help if you absolutely can only handle 20 mcg. But there is also 100mcg Henning Thybon. Divide the tablet into four pieces and it's 25mcg. Soooooo much cheaper. I take 60mcg so I divide 100mcg tablet and a 20mcg tablet. Mine is covered by insurance but it still lasts longer this way. I find it irritating renewing prescriptions.
Could you send me details of your pharmacist please? Or they might prefer to provide you with a brief written explanation which you can circulate so they are not bothered by lots of phone calls. My Boots and another pharmacy clearly not aware/not interested by my GP is a dispensing doctor-though I do not live far enough from the surgery to have my drugs dispensed by them, they might break the rules for this. Maybe? As my GP has 2 other patients on T3 and is hoping I can come up with a solution?
This is really interesting- could I ask you to send me the details of how it was done too? It will help those of us whose GPs are willing to prescibe liothyronine- but CCGs are trying to stop them. Thanks very much!
Hiya, I am planning on seeing my gp as I am getting stressed that they will try and take my T3 from me. If I have issues then please can I message you so I can get info if I need it. Xx
This is very interesting. I've been on T3 from Greece for over a year and haven't as yet felt really better. Please message me as it would be good to be able to try a different brand as well as obtaining T3 through my GP
Hi this sounds very good please could you private inbox the details 😀I'm not doing very well on Levo myself my gp trying to take me off it altogether !!! if I need T3 I need to be able to access it privately as I don't think my gp will prescribe but she will write private prescription ! Thankyou Kazbe 😀
To everyone asking. I had two different blocks to overcome. My original endocrinologist at Edinburgh Royal infirmary didn't seem to care or want to try new things. Whist he was on holiday a female locum agreed to write the prescription for Named Patient 25mcg Liothyronine . If you have a doctor that refuses to think out of the box, ask for a different doctor.
Once I had the prescription information from the hospital endo I needed to take that paper to my GP for an actual prescriptione. I took it first to a few pharmacies to see what they could actually order. Several said they would need to research the options, but didn't get back to me. One said that he could order anything except the UK version. As a last resort I took it to my local Boots. He said it shouldn't be a problem but the Pfizer product written on the prescription from the endo might not be available.
My GP wrote a prescription based on the info from the endo, but left of Pfizer as it was unclear it it could be imported.
I took this prescription back to Boots. The helpful pharmacist was covering at a different location. The pharmacist on duty indicated an inability to deal with this prescription. I was told to take it to the other Boots to speak with the pharmacist that had been helping me. So, clearly not all pharmacists are willing or able to deal with this.
The helpful pharmacist ordered a generic 25mcg liothyronine. The Sandoz from Germany was supplied. I had never heard of Sandoz.
After a few days I noticed a difference in the way I felt. After a few months I feel nearly normal for the first time since 2000.
The GP wrote the original prescription for only a one month supply. I had to have a telephone consultation to request another handwritten prescription. My doctor was on holiday. The duty doctor called. He was not clued up on what I was actually wanting. He started of with a lecture about the cost of Liothyronine and told me that if I didn't have a prescription from an endo I wouldn't be getting it at all as GPs had been told not to prescribe it. I let him finish the rant. Then explained that the reason I needed a prescription handwritten is because I am now using a Liothyronine that costs only €20 per bottle. He was clearly annoyed that I had ruined his rant. He then screwed up the prescription as he changed it from the endo suggesting I start with 2 per day of the 25mcg tablets and reassess after a few months as it was a decrease from my 3 per day 20mcg UK version. The prescription was written for 3 per day. He also wrote a 3 month supply based on the UK 28 tablet bottle rather than the 30 tablet box that Sandoz supplies. This doctor requested a further confirmation from my endo that this was a valid course of action. VERY strange! Luckily he is not my normal GP. So yet again...you may need to change GP if yours is uncooperative.
Boots has now been able to work out a system to get the handwritten prescription without me requesting a phone consultation.
I hesitate to give out the pharmacists name wily nilly as there seems to be a lot of interest in this post. He can help your pharmacist if they are struggling to organise a Named Patient prescription and in getting the approval from the health board. He can't assist in actually getting a Named Patient prescription. There may be other generics available. There should be no reason you can't specifically ask for the Sandoz product instead of a generic to be specified on the prescription as that is what I have in place now.
It is entirely possible that a GP would prescribe it without seeing an endocrinologist on the NHS as the cost of the Sandoz product is no longer prohibitive. Worth asking.
If you have a good relationship with your pharmacist you could ask about their ability to deal with Named Patient prescriptions. My GP needed help from the pharmacist to sort out the prescription as the item is not on their computer. It is on the pharmacists computer.
If you have a prescription and your pharmacist is not able to manage the Named Patient prescription please get in touch. I would suggest that you try your local Boots. If they still can't sort it out, I can then give you my pharmacists name and they can interact as they will be on the same system.
I get named patient basis for 9 years now. My gp writes liothyronine sodium in 25 MCG and I get three months worth. I ask for Cytomel Pfizer from pharmacist.
Hi Lintably, I too managed to get on NDT because my then doctor was on holiday and the Dr. standing in for her just wrote a 'script and emailed back the same day. I will never forget that day, I truly felt that I was going to be normal again, I felt so happy. I went cold turkey on my disgusting Levo and the following morning took the full dose of NDT - I was scared to death and thought that I might drop dead, but I didn't. Normal life was restored to me within 20 minutes!
I also wanted to endorse your advice about changing doctors/Endos. I am on about my fifth doc (I have lost count to be honest). I know it is upsetting but you have to have the courage to fire your doc and get another one if s/he won't prescribe the right medication for you or at very least try to get you on one which doesn't make you feel ill.
Well done and obviously overwhelmed with the responses you are receiving. Those of us who need this drug perhaps have a way round the distress we've been experiencing at the thought we might lose our t3 lifeline. I'm allergic to thyroxine so liothyronine is very important to me.
Impressive work! I wonder if it might be worth scanning a copy of the handwritten prescription and uploading it on here next time you have one. This might assist willing GPs who just dont know what to write. It might also assist those with GPs who arent willing to think outside the box and just default to 'It is too much effort lets not bother to try', we shouldn't have to spoonfeed but if it gets the job done......
It might be also be worth asking if the pharmacist is willing to write a short piece from their end of the process to assist unfamiliar/unhelpful pharmacists too.
This may save your helpful pharmacist cursing your name plus a lot of repetitive phone calls 😁 If the above works I would think TUK also would be happy to have copies for their advice section.. You never know, showing how cheap and easy it is may help in the saving T3 campaign they are fighting.
I have no idea how or why the German Sandoz Liothyronine is so different from the UK version. I was initially concerned that it was loaded with filler since it is a far larger tablet (about 4 or 5 times the size of the UK version). It is a much firmer consistency and tastes sweet. It is clearly designed to be easily broken in half.
I have no idea how the Sandoz product differed from the other German Liothyronine products.
No idea why it's working so well for me. No idea if any other Liothyronine would work as well for me. Might just be a happy accident that I'vecstumbled onto a medication that my body likes.
I haven't been able to lose weight in many years. I am also using a vibration plate machine as recommended by another thyroid patient who had success losing weight with the vibration plate. Losing a stone in 3 months is a miracle for me. I hope it doesn't plateau until I reach my ideal weight.
This is interesting. I tried searching Sandoz on the internet and it came up as being T4 drug. Do you know what is the full name of the drug - is it Trijodthyronin – Sandoz I believe is T3?
"Trijodthyronin Sandoz" with the small 'r' as being a registered trademark is on the box. In smaller letters it says "Wirkstaff Liothyronin (T3)" and "25 Gamma Tabletten".
There is no translation into other languages on the package insert...just German.
This link shows the exact product I have. It also shows the individual packets inside the box.
I have just had a follow up email from Dr Toft. He says that more and more pharmacists are willing to source T3 from other EU suppliers. He also says that he wouldn't be surprised to find that the UK T3 has 'variable potency' as it is a 'common complaint'. He says patients need to raise the high cost and variable potency issues with their MP. He says we should ask our MPs to raise a complaint with the Marketing and Competition Authority. (This is a govt organisation with no direct contact with the general public).
I wonder what Boots and other pharmacies charge the NHS for sourcing Sandoz T3 and similar products? Unsure how the pharmacy business works and their agreements with the NHS. It could be they are charging the NHS several times the 20 euro amount to fulfill the prescription. On the other hand there could already be agreed fixed rate charges in place. Just a thought.
Possibly ask the NHSBSA? Use Freedom of Information, if needed, but a simple question might get an answer as to whether there is a standard charge per prescription (or whatever basis it might be on).
The product I have is German. There are no translations on the package insert. I found this site with the package insert info that translates it to English.
That page is about bulk levothyroxine powder - as a commodity product to be sold for manufacturing levothyroxine tablets. The reference to liothyronine is identifying that the product could contain a small amount of liothyronine as an impurity or by-product.
The official standards for levothyroxine allow maybe 1% liothyronine (maximum).
I just confirmed with Boots the current price to NHS of my Sandoz product is £35. Initially before it arrived I had been told it would be £20.
The current price of Mercury is £258
I take T3 three times per day. The difference is over £660 per month and over £8,000 each year between the two drugs. Eye watering when you think about the money that could be saved across the UK.
Today I have written to my MP as suggested by Dr Toft and also written this letter to The Health Secretary.
Dear Health Secretary,
I am writing regarding the ongoing situation with Liothyronine (T3) medication for hypothyroidism.
There are several concerning issues:
1) there is some sort of single supplier agreement in place that makes it difficult for GPs and Endocrinologists to order other readily available generics at a fraction of the cost without creating a Named Patient prescription. Many doctors are reluctant to use Named Patient prescriptions.
2) readily available generic Liothyronine ranges in cost between £10-£35. The UK single supplier arrangement instead uses a Mercury Pharma product that is being investigated as part of the investigation into Concordia Pharmaceuticals price gouging. This UK preferred supplier is currently charging £258 for 28 of the 20mcg tablets. Many of the generics are supplied in batches of 30 tablets in 25mcg strength. Hence the UK preferred supplier that is under investigation is producing a less potent product and fewer tablets for an extortionate price. pharmaphorum.com/news/conco...
3) GPs have been instructed not to prescribe Liothyronine due to the extortionate cost. This leaves patients in need of this hormone in poor health. It is clearly far more sensible to lift the single supplier arrangement and instruct Endocrinologists and GPs to use other less expensive generics as they do with other drugs. A few Endocrinologists are now thinking out of the box and using the Named Patient prescription route to access the generics as a workaround. For instance, I am now on the German Sandoz 25mcg tablets at a cost of £35 for 30 tablets. I require 3 tablets per day. This is a saving of £669 per month. This is more than £8,000 per year just for myself. The savings to the NHS by allowing other generic Liothyronine to be prescribed ASAP is eye watering!
4) There are also ongoing patient complaints of variations in potency from batch to batch with the UK preferred Mercury Pharma product. Hence not only is it more expensive, it doesn't work very well. That is consistent with my personal experience. Since being changed to the Sandoz product I feel much better! I have lost a stone in 3 months, my energy is much improved, my palpitations have stopped, my hair is thicker, my insomnia is gone. In contrast, the Mercury product seemed to peak very quickly then leave me very tired again. I have been on it for many years and found it utterly impossible to lose weight. Sadly, to achieve this improvement to my health it required finding an endocrinologist willing to write a Named Patient prescription and then a Pharmacist that could pursue the prescription and request permission from the health board to fill the prescription. Many patients are not lucky enough to be able to achieve this and are unwell because of the difficulty in getting a prescription for a low cost effective medication.
5) An investigation should be started into why the NHS is only authorising the extortionate and less effective variable potency version of Liothyronine.
I look forward to your prompt attention to this matter. I'm hoping to hear that the restriction against other generics has been lifted and the instruction to GPs and Endocrinologists to not prescribe this essential drug amended.
Thank you for this detailed explanation you have obviously been inundated! Never got that chat but than you so much for this. I will go and speak to my pharmacist first then go armed to the GP.
Could you please PM me too with all the info on the German Liothyronine. My GP has been told to stop prescribing my Liothyronine due to cost. My Endo Doc is trying to sort it all out but i am worried in case they stop it completely. I am on Levo/Lio combo 75/10 mcg. Not sure how to approach my GP about the German Liothyronine. Thank you for posting about this.
Hi, has anyone else had noticeable improvements by using Sandoz or any other T3 equivalent rather than the Mercury Pharma one? Why would a tablet of the same dose give such difference results between different manufacturers? Thanks
FWIW, I stumbled on this info about Sandoz Thyroxine. It is 12.5% more bioavailable than the Synthroid brand benchmark in the USA.
If the Liothyronine is also more bioavailable, that is likely why I feel so much better.
I suspect Mercury Pharma would be the opposite and be less bioavailable than the USA cytomel brand T3. As it is a 20mcg dose rather than 25mcg, perhaps they've not been compared.
At first they wrote the prescription for 25mcg twice per day and check lab results after 3 months. The original prescrption was written by a locum.
The GP asked for a letter from my regular endo confirming that I could change. At that stage inexplicably it was increased to 3 times per day. I think this was just carelessness in keeping the 3 times per day schedule.
Since it saves me the hassle of requesting an increase if I feel under medicated I'm just leaving things as they are. Any extra that I don't take will give me a safety net if Sandoz is withdrawn in the UK in future.
Bear in mind the the OLD formulation of Teva was withdrawn from the UK market after they changed the dextrin ingredient. (It looks as if they simply used a slightly different dextrin - not more, not less, not a wholly different ingredient.) This resulted in the tablets failing to deliver their claimed potency to those taking them.
That single change made a big enough difference to cause a mass of complaints.
Given that we are all different, our ability to absorb the active ingredient from one formulation could well be different to another formulation.
T3 Sandoz Boots . I have just spoken to 2 different Boots pharmacists who both gave e the same response. Can be bought on private script. OVER £300 for 28. When asked if they have had scrips from any of the endos. in my area the answer was a resounding no.
I think they are conflating a private prescription for the T3 approved by NICE.
If you had a private prescription for the 25mcg T3 that needs to be ordered as a Special it would come in as Sandoz from Boots. I'm not sure they can see the price of a 'special' until it's ordered. If Boots is inflating something that costs £35 including the import taxes to £300 I would be very surprised. I will show your comment to my pharmacist. Which Boots have given you this info? Did you have a prescription in hand so they could place the order for the 'special'?
If they looked up the normal 20mcg T3 that is given in the UK it was £258 on the NHS last time I checked and likely more as a private prescription.
The fact they are saying '28' tablets also leads me to believe they are looking at the UK version. Sandoz is not only in the different 25mcg dosage, but is in packets of 30. It is a sealed box with 3 individually wrapped foils with 10 tablets each. No way to dispense 28
Hi! Glad someone is getting good results. I hope you are still doing well on your T3. I've asked my Boots Pharmacy in Guildford if they can get hold of Sandoz,Thybon Henning or Morningside T3 and they have just got back to me saying the only T3 they can get is Mercury ie Concordia at over £200 or another brand called Idis but it would take at least two months to get it and they didn't know the cost as their Specials team hadn't told them. I feel like banging my head against a brick wall might bring better results!!! I would be very grateful if you had any info I could pass on to my pharmacist on how to get Sandoz. Specific instructions or the name of someone they can speak to would be great! I'm seeing my GP in 2 or 3 weeks and would really like to be able to present him with the info. Thanks very much.
Hi, I have been reading your post with interest. I am on T3,(prescribed by my endo and on prescription from my doctors), I was originally on Mercury Pharma, then 2 months ago I was given Teva. I have not done well on this and went to my Boots chemist in Edinburgh and asked to be put back on Mercury Parma (not great but better than Teva for me). I was told that the only T3 available now is the Teva brand. I then mentioned to them about you being prescribed Sanofi from a Boots in Edinburgh. The pharmacist was helpful and has been trying to get this brand for me but so far she has not been able to find any. Would you be able to message me, privately or otherwise, if you are still getting Sanofi from a Boots in Edinburgh and if possible let me know which one. Many thanks. I am on 25mcg by the way.
Just read your brilliant info, thank you, im a little late joining the conversation, but as you probably would guess ive hit the NHS wall too.
Im with a positive Endo, i have the faulty gene, i want to add T3 to existing NDT (final part of the puzzle methinks) all of which he agrees (v long story) but when i mentioned having a script for the 'liothyronine hydrochloride' Sanofi , as well as trialing others from UK ,as id seen info that Hashis folk do very well on, better than the 'sodium liothyronine', he jumped up and hastily said 3 times ! " its not licenced here in the UK"..... but am i understanding you correctly that i just have to get the wording from him exact on the prescription? Surely if its legit in Germany, whats the problem ?
Although i wonder what will happen post brexit......
Every best wish, i am so very pleased to here that just that change of meds shifted things for you.....you have given me great hope tonight, a hope that maybe i can have that too. Thank you. G
I gave up on my doctor and got some (More) T3 than she was willing to prescribe.
I am feeling better than I have in such a very long time it’s so strange, and so wonderful. I have quite emotional moments, like- WOW! This is what I’ve been missing, for years and years of my life!
Please may I have your Pharmacist's details. I have just been informed that my Liothyronine has been stopped and I was so unwell on Levothyroxine. I am desperate to find a way to stay on it but preferably not buying on the internet.
Can you tell me the German name? Is it Henning Thybon. I live in Germany so that is what I take but you seem to be describing another brand, I'm very curious to see what options are out there. But I thought Sandoz was Belgium.
But the story is a bit more complicated than that. Sanofi is a large company with several parts.
Sanofi (sometimes Sanofi-Aventis) is a large French pharmaceutical company which produces their own branded liothyronine product Cynomel in 25 microgram tablets.
Sanofi Deutschland is a part of Sanofi in Germany which owns Henning which produces their own branded liothyronine product Thybon in 20, 50 and 100 microgram tablets.
Either of them could be sourced by any competent pharmacy in the UK. Some will be more helpful than others.
If you have a prescription, Henning Thybon can be purchased online from Germany.
When you get the alert to this response you will find the thread you asked about!
In response to whoever said is anyone feeling well on T3, I have to say that I am. I was prescribed T3 in January and slowly I started to feel a little better. Easier to get up in the morning, no more bone aching tiredness and feeling like I had a little energy! Hairs starting to grow back on my legs and starting to sweat when warm (I haven't sweated in 6 years). Only on 20mcgs and what I received from the pharmacy was Thybon Henning as my local pharmacy only had out of date T3 (to say I was livid was an understatement). A month later, my next prescription was Mercury Pharma, again 20mcgs tabs (0nly 28 prescribed) and I start to go downhill again! I saw my GP, explained I want Thybon Henning and that I want more than 28tabs at a time as I'm on holiday when the tabs run out. After a long discussion and a reassurance that what I would get was Thybon Henning, he gave me a private prescription free of charge (as I was saving the NHS money) and I get the tabs from Germany. Cost 30.15 euros for 100 20mcg tablets and 9 euros postage. Been on them just over a week and I'm feeling good again. They are definitely more potent than Mercury Pharma. Just hoping that if I can stay on these tablets and that they will start to help me with losing weight too. I have the DIO2 heterozygous gene too (although I've not used this information yet). Just wanted to let everyone know that there is hope!
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