Is Yellow Card Scheme a Voice for Prescription of T3 ?

If everyone registered their poor response on Levothyroxine with the yellow card scheme, maybe the powers that be would listen. It would allow all those who self medicate and are not on the NHS radar for taking T3, to correct the current statistics and thinking that there is not enough evidence to show how good T3 is for many people.

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  • Shelley1954 The Yellow Card Scheme is for collecting information about adverse side effects/reactions to medication so safety of them can be monitored.

    It's not particularly for 'poor response', that wouldn't come under the same meaning.

    I had reason to submit details last year of a reaction to an antibiotic which is known to have affected a lot of people and in some cases has had life changing effects. That's what they are looking for so that those type of medications will be monitored and, if necessary, be restricted or withdrawn I assume.

    yellowcard.mhra.gov.uk/the-...

  • I realise that,but so many people have posted on here about the suffering caused by Levo, hence they switch to T3 or add T3.

    Thinking slightly outside the box, surely if someone is being constantly prescribed a medication (Levo) and it isnt dealing with their symptoms, forcing them to buy medication from abroad, there is not only a safety issue here but a question as to why Levo isnt dealing with the symptoms in so many people.

  • l was in Medical sales time ago and never known a GP register a Yellow Card. l dont suppose most of the public know about it, or that you can do so on line

  • When I had a bad reaction to the antibiotic and told my GP, he said (a bit panicky) "Don't take any more" and he monitored me every four weeks for 3 months. Not once did he mention the yellow card scheme. I knew about it from seeing something on here I think, but patient information leaflets seem to include it now.

  • There was a yellow postcard always in the regular doctors MIMS booklet of drugs - but dont know if this is published now and also on line. As l say l never saw or heard of a Medic using them - maybe because they are frequently paid to put patients on certain drugs, and if not drug companies often NHS do - like the Flu vac that far from suits everyone

  • Sorry posted it in wrong place! Was it Ciprofloxacin? or another fluroquinalone?

  • Maybe needs to be regularly referred to on here then... So it can be seen - an option for us all. We need to use every avenue we can to be heard and if enough of us do so....??

    I'm a great believer of the power of numbers!

  • l think you are quite right - there does need to be public awareness. lt appears its only more recently that patients as well as Medics were encouraged to fill in yellow cards - and l am sure most dont know they exist. Regular reminders would be ideal

  • Absolutely. Let's face it I can imagine GP being very keen to fill in about t3, but not t4? As my earlier post said, I had no idea about this 'Yellow card'. I'm sure as patients it is not being overly publicised!

  • l never thought to mention it here. l expect another reason why GPs dont bother is that they do have to fill in a lot of paper l believe, as well as other motives. l only found this site recently after decadeS of being fobbed off - tho over-tired all my life. Going in for tests on Monday a.m as have low Cortisol(Adrenals) and judging by this site- am more than fortunate to have found a delightful young Endo lady with open mind, and where l can mention a Healer who helped in the past.

    l expect you are aware that often when GP and my Consul-tant request T3 in the blood test, it was just ignored 2x by Soton path Labs as its expensive to prescribe(we can buy abroad cheaply). I found that outrageous but it will be done on Monday. That

  • l cdnt finish above. l am finding out more all the time. l came out of Medical Sales years ago because l dont agree with spreading the use of any drugs - unless they really are very necessary e.g being antibiotic in below waist surgery but not handed out for colds etc. l always used Homeopathy (and on my animals) for over 40 years and herbs - but dare not ever breathe the word at work.

  • Bluecat101 Why would GP's report, certainly about Levo, when that is all they want to issue - somewhat biased I'd say? They won't even accept that on t4 when not working causing all these other symptoms and problems? To report it would show their own failings!

    Yep I have also had blood done - as on t3 only was suppose to be tested too - but labs refuse. GP had to 'find a way around'. New GP - and as I had not seen Endo in that county!! Crazy - don't move! madness! Someone on here said it is illegal for bloods to be taken if not for the reasons patient knows about, so in a way them not doing t3 testing means they are breaking law, if that is what you are expecting as a patient?

    Good luck Monday. Taking t4 ad not getting the right treatment meant my lack of thyroid function had a knock on my adrenals too. Dr P said something like, it is important for you to get adrenals sorted or uptake of any meds will be inhibited. I think there is different thinking regarding adrenals and thyroid out there, but this advice worked for me. If you are any where near the middle of the country please PM with this young lady Endo you are talking about. Well done for finding her....lets hope she doesn't get converted too quickly.

    Let us know how you get on. Best of luck

  • Well l have not gone near GPs hardly since l was 18 as they are rarely any use to me for anything-having had the worst female probs (PMT) ever heard of- ruining life, career and relationships! l was lucky to be rec to a Bmth Healer who was 'magic' with female probs - only to lose him suddenly. When my GP said occ l looked so well l never hesitated to say 'been to my Healer' and she wd look puzzled. But cant find replacement. Found book written by local Naturopath and made app telling his wife l was on low income. At last mo she said it was £170 for one app; l cancelled as anther friend ran up £1600 for blood tests private in London which l expect he wd ask for as well. Doc said l'd be seen sooner in some more general clinic - l know she didnt believe me as l suppose l looked ok when she saw me mid a.m. Should have dressed down and looked really scruffy. l got choice of 3 and chose Thyroid Clinic at Bmth where this delightful young Consultant lady is. l find GP trying to avoid me - since she made me do another test when Cortisol was low AGAIN - on test ordered by consultant proving her wrong for years & others. This does not show up in basic Thyroid test. But they never thought of questioning why T4 was always on lowest figure every time tested. Friend's husband said all the less bright in his class became Medics!

  • Bluecat101 I put in a yellow card for Mercury Pharma Eltroxin about 3 weeks ago after having only taken it for 3 days. I also put in one for the same company when I was changed from Goldshield Eltroxin to Mercury Pharma Generic Levothyroxine in 2010. Something has gone seriously wrong with our Levothyroxine lately. However a response from MHRA would be good!

  • Hi - l am not sure how it actually works ie what happens after its reported. l just know most GPs dont bother. l wd try again maybe

  • This is the first I have heard of the Yellow Card Scheme? How much we don't know about!

    I would argue with SeasideSusie that poor response on t4 leads to life changing effects and ongoing damage of the thyroid, if Hashi's. Hence should be the sort of thing that is reported to them?

    Even though I am on t3 only, for 7 years now, with no ill effects only positives, I might just do this yellow card thing- I suspect had I had t4 35 years ago - it may have helped thyroid but when thyroid damaged beyond repair, t4 does not work only makes things worse. I reiterate, HYpoT is a potentially fatal condition, left untreated or mistreated can lead to all sorts of other debilitating conditions and problems and ultimately premature death.

    I'd say that makes it serious enough to be yellow carded!

    NO office intended SeasideSusie. Have seen, first hand, the effects of poor response to t4.

  • Oh, no offence taken :) but it's safety of a medication they are interested in, no poor response.

    "The Yellow Card Scheme is the UK system for collecting information on suspected adverse drug reactions (ADRs) to medicines. The scheme allows the safety of the medicines and vaccines that are on the market to be monitored.[1]

    The Scheme was founded in 1964 after the thalidomide disaster, and was developed by Bill Inman. It is run by the Medicines and Healthcare Products Regulatory Agency (MHRA) and the Commission on Human Medicines (CHM). Suspected ADRs are collected on all licensed medicines and vaccines, from those issued on prescription to medicines bought over the counter from a pharmacist or supermarket. The Scheme also includes all herbal preparations and unlicensed medicines. ADRs can be reported by anyone; this is usually done by healthcare professionals - including doctors, pharmacists and nurses - but patients and carers can also make reports.

    The sort of ADRs that should be reported are:

    ADRs that have caused death or a serious illness

    Any ADR, however minor, if associated with a new medicine or one that is under continued monitoring (highlighted in the British National Formulary (BNF) with a ▼ black triangle)

    Any ADR, however minor, if associated with a child (under 18 years of age) or in pregnancy"

    And

    "The Yellow Card Scheme is vital in helping the MHRA monitor the safety of all healthcare products in the UK to ensure they are acceptably safe for patients and those that use them. Reports can be made for all medicines including vaccines, blood factors and immunoglobulins, herbal medicines and homeopathic remedies, and all medical devices available on the UK market. From the 20th of May 2016, the MHRA is also collecting reports of safety concerns associated with e-cigarette products through the Yellow Card Scheme.

    The Scheme collects information on suspected problems or incidents involving

    side effects (also known as adverse drug reactions or ADRs)

    medical device adverse incidents

    defective medicines (those that are not of an acceptable quality)

    counterfeit or fake medicines or medical devices

    safety concerns for e-cigarettes or their refill containers (e-liquids)"

    They don't enter into any dialogue following submission of a yellow card, in fact I can't remember any kind of response at all.

  • SeasideSusie Glad you were not offended, sharing thoughts, ideas and opinions, along with information is vital to get a full picture of understanding. And I thank you for sharing your knowledge, I'm really feeling just how muchI don't know about, reading these posts. Many meds I have never heard of, amongst other things.

    I do take your point about the safety of medication but if you are given t4 for 20 years and Dr insist and offer nothing else, despite them constantly being told it is doing no good and in fact other symptoms and health problems develop and become more and more debilitating, - that is having a very adverse on health, meaning that the drug is not doing what it should, for some people. It is causing deterioration of health. If left on t4 - with deteriorating health and further health problems arising, it is very likely going to lead to needing lots of care and probably premature death. Just because the reaction is slow, does not make it any less serious? Surely?

    And maybe if more of us had been aware of this and reported it, we might not be facing the t3 crisis now. I was t4 toxic - due to being given this and nothing else for so long, believe me it has very adverse effects.

  • I hear you UrsaP :)

    In fact, our stories are very similar, I could have written most of what you've put in your post.

    I have been diagnosed/treated for over 40 years. I jogged along reasonably well(ish) for the first 20, but thinking back I now know that there were still hypo symptoms but just not as bad as pre-diagnosis. I mourn the loss of the two years of my second child's baby/toddlerhood, this was pre-diagnosis and I don't remember them because I could hardly function. I'm angry that I couldn't enjoy all the things young parents with young children can do because I was usually too tired. I feel sorry for my late husband because I was never the wife, in the proper sense, that I should have been. But I plodded along.

    Then about 20 years ago something went very wrong, I was very unwell, I couldn't get to the bottom of it, my GP couldn't either, the two most eminent private doctors tried (NDT and T3 and a combination) but couldn't get to the bottom of it either, seeing an endo made it 100 times worse, so I went back on Levo and limped along in Limbo Land until I had to stop working. I'm angry that I had to let my late husband down again, to cope on his own in our business because I again became too unwell to do my share.

    Now, for almost the last two years, after testing things the NHS didn't and supplementing to help put things right, and adding T3 to the Levo myself, I'm in a better place although still working on it. GP isn't involved, they don't know anywhere near enough to help (or even be interested) in patients who don't do well on their precious 'one size fits all'.

    I believe I was T4 toxic too. My old GP, in an effort to help with my continuing hypo symptoms, continued to ever increase my Levo until my FT4 was stupidly high over range. She was trying to help, but she just didn't know enough because they're not taught enough. The collective knowledge of forum members really does put the medical profession to shame where Hypothyroidism is concerned, they really could learn a lot if they read the forum!

    My point is, Levo was OKish for a while, something happened and it wasn't the fault of the Levo. Something was stopping me being well on Levo. Long term Hypo had caused other problems and I had a poor response to the Levo, not an adverse reaction, not something life threatening due to the Levo, not something dangerous, it was something else causing the poor response.

    The yellow card scheme isn't interested in this, it's not their remit. They are purely out to find out about dangerous medications that cause serious side effects.

    Of course, to us, remaining so unwell when we don't respond to a medication in the way the majority do (and the greater majority do well on Levo, they're just not members here, they have no need to be) is life changing, debilitating and many more things. But not a safety concern in the way that the yellow card scheme is looking for.

    I'm with you, I really am, but our problem is with the doctors who know too little to help us, refuse to believe we can still have symptoms despite blood tests looking 'OK', who can't think outside the box. Something needs to be done, absolutely definitely​, no doubt, but the yellow card scheme isn't going to be passing on our 'poor response' to anyone. We need to be targeting the right people and that is what Thyroid UK and other thyroid charities are trying to do, but it's a long, slow journey to try and educate these doctors whose heads are buried so deeply in the sand :(

  • And I do understand what you are saying SeasideSusie. I'm not sure we are ever going to fully agree on this and I expect the Yellow card system may agree with you, but it has to be worth a try? If enough of us have had problems with it in this way it should be looked at. And let's face it maybe that is why so many are on here.

    They say the 'majority' do well on t4. How do they justify that comment? Yes, I accept that those on t4 only doing well, are unlikely to be on such a forum as this. But are they doing well, or have the real problems not started for them yet? I'd bet for some at least, this is the case.

    How many are supposedly still 'doing well on t4' when they may only be in the first stages of being lied to, ignored and fobbed off? They have yet to become totally disillusioned with their GP's, and start looking for external help. They may only be where I was 15 - 20 years ago - getting fed up of being fobbed off with their symptoms being accredited to everything but their thyroid condition?

    In the meantime, GP's can count them as part of their 'majority' still 'doing well'. I do not buy any of these vague assessments/percentages and figures, plucked out of the air, when we know that anyone with HypoT is guaranteed not to be listened to by most GP's. Not all. But most, and increasingly so.

    It does sounds very like we have had similar experiences. I struggled along without any meds for a decade or more. I think longer and now think aspects of my childhood held clues and signs to problems arising. I then had t4 only for 20 years.

    I honestly believe that had I been given t4 when first saw an Endo, in 1981ish, it many well have halted the destruction of the thyroid. But as I wasn't, by the time I did get diagnosed and given t4, my system was so compromised that it could not convert and use t4 properly. What makes this drug somewhat dangerous is the fact that it is the only thing offered and by taking it continually when it was not doing any good, it is at least contributing to harm.

    I never felt better in any way shape of form on T4. I kept telling the Dr's this, they just kept altering doses and telling me lifestyle excuses - i.e working/kids etc. I told them that the fatigue was not 'lifestyle' but they would not listen. I am also certain that all this time my thyroid was struggling more and more, and this drug is dangerous if allowed to build up in our systems to cause all these other debilitating symptoms - fibrmyagria, migraine etc...which it did. I proved this by trying to reinstate it on several occasions - within days of stopping all adverse symptoms stopped. Within less time starting back on t4 all returned and persisted.

    I think this aspect of this drug should be considered. Especially when it is the only option offered by GP's for a potentially fatal condition. It needs better understanding at the very least?

    I do totally agree with you that it is the issue that GP's just do not understand enough, nor do they appreciate that this condition can affect everything - so why shouldn't it cause migraines, fibro, CF etc?

    We do not have the time to educate them. In my view, they should accept they are not 'specialists' and refer us. But they don't, not readily. And no amount of educating them, or changing procedures will solve this problem, if they and even the specialists are actively discouraged from discussing the use of this drug never mind using it!

    I do not want my son, who is struggling, to go through the same number of years dealing with the same 'head in sand' attitudes, that we have endured and been fighting against. I do not want him to go through life, like you said, losing out of the enjoyment of life itself, being unable to cope and function on normal levels, like we have had to. I don't want him to have to give up future jobs because of bouts of ill health and long term illness. I do not want him to face the prejudices and negative attitudes and jokes, that we have had to endure.

    He has already missed out on life opportunities because of 'unexplained' illness!

    You didn't mention if you ever tried t3 only? I'm sorry if you did and I missed it. Because it does sound like you are/were struggling to convert also? If you haven't maybe it is something to consider. I do understand your feelings regarding your husband. And I am sorry that you have now lost him. My own is generally understanding, more so since seeing Dr P with me 7 years ago - I think it was at that stage that he realised I did have a 'real' problem.I think before that he did have some doubts because I was fighting it - running a home, bringing up too small boys, doing a 3 year degree. To this day I do not know how I managed that...but I do think it knocked me for six! I was trying to keep going - to be honest, I did not know that what I was feeling was not 'normal'.

    I am sure your husband understood. You should not blame yourself for a condition that literally steals our quality of life away.

    I wish you all the best and above all good health.

  • UrsaP Yes I had a spell on T3 only back in 2002, with the strangest test results, although I don't have a note of the time lapse between last dose of T3 and blood draw. The result in 40mcg T3 only were

    TSH: 0.39 (0.27-4.30) - a very rare occasion when my TSH was not suppressed!

    FT4: <0.5 (11.8-24.6)

    FT3: 2 (2.8-7.1)

    None of those are typos! Something very strange was going on!

    I have to say that my hubby was very understanding after diagnosis, I was very lucky in that respect, and he did everything he could to help out when I was at my worst.

    It really is very sad, and shameful, that us thyroidies are left to suffer like this. I can't see anything changing anytime soon. I could cry at some of the posts from new members when their dire results are ignored by their doctors :(

    Maybe you should fill in a yellow card, encourage others to do the same. Maybe if enough are done someone might give it some thought. Let us know if you get a response. I truly hope you do. At the end of the day anything is worth trying.

  • My husband is the same, but he struggles with arthritis, since he was in about 20 too, was treated for gout for 8 years before a locum linked the fact that he had Psoriasis, and the 'gout' could be psoriatic arthritis....which it turned out to be! He has his own health issues. Bit of a crocked couple!

    I think we have to just try anything. We are not getting the help where we should, and far too many are being let down so badly.

    How long did you try t3 for? And did you feel any benefit? I think it is more about how you feel and what works for you than how bloods look on paper, we are all so different and possibly 'wired up' differently.

    I started slow on t3, had to keep restarting, tried adding in t4, but as said earlier it didn't work, so had to keep restarting. Ended up on 60mcg t3 - took about 18 months to 2 yrs to find right balance but when did it really was amazing, the difference was incredible and I had no adverse effects. Have been great on it for years. Felt alive for first time in my life. Felt fitter and warmer, less dry skin and hair, energy, I could not believe, brain fog gone, had stamina, etc etc... Only now occasional wobble when big stress in life, but that is adrenals - weakened by years of neglect of thyroid, had knock on effect - and when stress goes health improves too.

    on 50mcg per day now - GP last year reduced as T3 over subscribed, but I think adrenals shot- bereavement and family issues knocked me - think system had slowed down again - getting slowly back up there though, now. (Had lost weight too, so will see, eventually, if 50 enough)

    I tend to get bloods done once a year for GP review or they won't issue, but tend not to take too much notice - I know how I feel and if there is an issue, I will try to sort it myself.

    I would now be afraid to go to GP and say I was having any issues, as ignore adrenal problems and would no doubt ,now, love to blame any health issues on T3... If I think it might be t3. I'd stop it for a few days, would soon know.

    But I must find my last bloods, a year ago and have a look and compare to yours...but not tonight if you don't mind! Would be interesting to maybe compare. Remind me if I don't come back to you - memory still failing! Now would that be from pregnancies - last one 22/3 years ago - or thyroid or alzheimer's???

  • UrsaP I was on 40mcg T3 only for 3 months altogether with no real benefit.

    Over the two years, under the guidance of the two popular private doctors, I tried and had no lasting benefits on:

    Armour - eventually up to 3 grains

    Armour 3 grains plus 20mcg T3

    Armour 3.5 grains plus 20mcg T3

    Back to Armour 3 grains no T3

    40mcg T3 only

    NDT 2.5 grains

    Adrenals were tested back then but nothing else, apart from antibodies.

    There was no advice back then about fasting or timing of meds when having blood tests, or even timing of blood draw.

    The money for private doctors and private testing ran out so it was back to GP, Levo and a totally useless endo.

    Things move on, there are internet forums now, more information available from various sources, more testing, so more opportunity now to get to the bottom of things and see where possible problems lie.

  • Hi SeasideSusie. It took me a lot longer than 3 months to find a balance that worked. I just went from t4 to t3 - with adrenal support it does work for me. Even though I would say I am far from 'optimal' right now, going in right direction, at least. I am realising more and more each day just how lucky I have actually been ...when hear what other have gone through and to still be struggling. It is just so wrong.

    I'm so sorry to hear your struggle, wonder if these hormones did not work well for you, maybe it is other hormones that are lacking? Oestrogen or some such - - not that I know what I'm talking about but trying to think around the obvious?

    I hope you find a solution that suits you and soon.

  • Oh, I've found out now what it most likely is, maybe even was back then but not tested/thought of, that was way back in 2000/2002. I could only be guided by them. We put all our faith in them. They were the ones to make the changes. I was very suprised that I spent such a lot of money with the two most eminent private thyroid doctors and neither of them could get to the bottom of it or help me feel better in two years.

    Starting a couple of years ago, I've learned a lot more, gradually tested just about everything, consulted a practitioner to interpret some of the tests, who put me on the right road to sort those things out, and despite her saying otherwise I've gone my own way with thyroid meds and things are better than they were. I'm still tweaking!

  • That is very positive news. It just shows how even the 'experts' do not know everything! I saw an 'eminent' thyroid specialist in Leeds c1981 - sent me away two years later...couldn't make his mind up so struggled for a diagnosis for another decade? Mad.

    Luckily after many years seeing Dr P was my lifesaver.

    I think because our thyroids are probably completely shot - due to years of struggling, no doubt if they 'cut us open' they would see our thyroids would be shrivelled up by now! Isn't that how this condition was found in 1800's?

  • SeasideSusie

    Any ADR, however minor, if associated with a new medicine or one that is under continued monitoring (highlighted in the British National Formulary (BNF) with a ▼ black triangle)

    I never knew that! Thanks for the info.

    I've just found a couple of links in the BNF that I wish I'd found years ago.

    Abbreviations and symbols

    evidence.nhs.uk/formulary/b...

    How to use the BNF :

    evidence.nhs.uk/formulary/b...

    evidence.nhs.uk/formulary/b...

  • SeasideSusie

    Yes, and for some of us levo simply is NOT safe.

  • Well, I can confidently say that I had extremely adverse reaction to levo and it went far and beyond than just "not working". I was climbing walls and my cortisol went off the roof!!!

  • Kitten1978 So I hope you reported your adverse reaction by yellow card and to your GP. Your experience is totally different from the 'poor response' the original poster was talking about and what this discussion has been about so far.

  • Hi Seasidesusie,

    Yes, I have reported it online. Doctors rarely believe you when you tell them that you had bad reaction to T4. They are taught that everybody gets well on levo. If they don't, it's nothing to do with T4.

    I absolutely do NOT agree with you on the "poor response" issue. Poorly treated hypothyroidism leads to multiple secondary health problems, including diabetes, obesity, chronic pain, emotional difficulties, fatigue, infertility, cardiovascular problems, GI issues etc. If levo doesn't work well enough for so many people we need to start reporting it. Why would we count on our doctors to do it? (there are so many other things they should do but they don't).

  • All I am saying is that 'poor response', in the vein of what has been discussed here, is not the same as 'adverse reaction' in the way the Yellow Card Scheme means regarding safety of a medication such as thalidomide mentioned in one of the links I found and quoted. It's something to disagree about with them, not me.

  • I can see your point. The system needs changing. I also didn't like that they included both T4 and ndt in the same stats in the links posted by humanbean. However, given that T3 is currently being taken away from so many of us who desperately need it, the imperfections of the yellow card reporting scheme and the "poor response" versus "adverse effects" difference is the least of our problems.

    Machiavellistic-Me thinks that anything we can do to make sure that T3 is available to us is worth doing. Hard numbers speak stronger that our "case stories"/qualitative data.

  • I complained that the Prescription Cost Analysis mis-classified Armour, Nature-Throid, Erfa and WP Thyroid as "levothyroxine" products - and it has been changed. Only took a few months for the change to work its way through. As I doubt anyone else complained (it had been like that for many years), it shows that "they" might well respond to a single properly formulated "Please change this because..." email or letter.

  • Shelley1954 Icescream99

    People can see the reports produced from the Yellow card data here :

    For Levothyroxine (T4) :

    info.mhra.gov.uk/drug-analy...

    For Liothyronine (T3) :

    info.mhra.gov.uk/drug-analy...

    Please note that both the links above also include reports about ARMOUR THYROID, ERFA THYROID, NATURE-THROID in the reports as a Multiple constituent brand name.

    It's also worth noting that there have been no reports of fatalities for Liothyronine, Armour Thyroid, Erfa, or Nature-throid, but there have been a few reported for Levothyroxine.

    Edit : It's also worth pointing out that it isn't mandatory for doctors to report adverse drug reactions (ADRs), as far as I know. Patients can report ADRs without involving their doctor but I imagine very few know they can do this, and fewer still will ever report them.

  • Thanks for posting these links humanbean, I was thinking of writing to MHRA, as after three days on MP Eltroxin I am beginning to get symptoms that I got seven years ago when I was changed from Goldshield Eltroxin (glue-like patches on skin) and now also feeling nauseous and slightly fuzzy-headed. Legs more leaden than usual too, so I will definitely write now. As I have now tried all in UK I really wonder what they have done to Levothyroxine, or is this still something that happened in the beginning with MP Generic Levothyroxine?

  • j_bee, It has been my understanding that MP Generic and MP branded Eltroxin are one and the same thing now. I thought this was something MP confirmed a few years back. Aren't the ingredients exactly the same, with the only difference being the name on the box?

    In any case, if you're getting adverse reactions, definitely yellow card it!

  • RedApple , I had not got rid of the side effects from the first time I was changed to the generic MP Levo, but was told by my local CCG to try MP Eltroxin. I, also, was under the impression that it was the same as their generic. I can now report back to CCG that it is causing more problems than I originally had without medication and that is saying something when I only have 1/10th of my thyroid left (and probably not working anyway). Three days back on MP Eltroxin and I am very short of breath and can barely walk, not to mention the 'glue' problem. I know all AMCo/Concordia arguments and will be sending a copy of all they have written to me to my local CCG and MHRA now.

    Don't know where to turn to now as I have tried to get onto NDT and cannot. I think I did report this soon after being changed in 2010, but cannot find any proof that I did this. Enough people did report problems and still nothing was changed though.

  • It feels like we're constantly banging our heads against brick walls on all this doesn't it :( Have you explored the non-UK levothyroxine brands? I know some people get on better with the German and Greek ones.

  • RedApple I have tried the German Aliud and to be honest that was not much better and left the most awful salty and burning feeling in my mouth with not much better energy levels and my blood levels were not good either. I lowered my (already low) T4 by 25mcg and added Unipharma T3 x 12.5, but this then lowered my FT3 by 0.5, so I added back in the 25mcg and lowered the T3 by 6.25 mcg) it went up to 5.1 (still 0.5 lower than when on Goldshield Eltroxin). When CCG stopped the Aliud I decided it wasn't good enough to go back to funding my own and went onto Wockhardt, together wiith 6.25 mcg if T3. My FT3 then went down to 4.97 (3.1 - 6.8). B12 is 964 (197 - 771), D3 is 95 (50 - 200) and Folate 15 (3.9 - 20), Ferritin is 126 (13 - 150). Shelley1954 sorry to have hijacked your post somewhat, but hope this has also beennuseful to you.

  • Humanbean,

    Thank you for posting those links. They are brilliant and they can be very useful.

    It's striking that there have been no deaths caused by T3-only medication, although so many of us have been told by the docs that T3-only would certainly kill us lol .

    13 people actually died because of levo? An we are being told that levo is safer? Yes, I know that so many more people take levo than T3 but still... That's fascinating (in a morbid sort of way).

  • Shelley1954 Can you clarify how we register with the Yellow card scheme please?

  • Its all here UPower, yellowcard.mhra.gov.uk/

  • Cheers Shelley1954, much appreciated.

  • Thank you Shelley1954 for suggesting this!

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